Interferon experience

Week 76 - Perspectives

2007-09-15T08:21:00.000+02:00

One needs a little distance from events before one can put them into proper perspective. I suppose international conflicts are good examples: Who today can really reflect on the American invasion of Iraq? Who knows how the situation in Darfur got to where it is today, and how it is going to turn out? Is the world really going to do anything about global warming before we have changed the planet beyond the point of no return?

Big questions.

The same applies to cancer. When you first discover you are affected, your whole world changes. All the plans and ideas you had in the past are thrown out the window. In theory you look at all the new alternatives, and map out a future and then carry on, right?

Not really. Unfortunately cancer, and HIV/Aids, and tsunamis, and motor accidents all have such a large impact that we struggle just to survive. It is very difficult to look forward to the future, and make plans.

I certainly found this to be the case. I have been free of interferon now for almost six months, and only now can I get some perspective on where I have been and where I am going. During that long year my attention was focused simply on survival: Put one foot in front of the other; do the right things; keep going.

Although I certainly had some long-term plans for the future, these had to take a back seat. I tried to get started with some projects, such as building a new house for our retirement, but couldn’t make any real progress. So many things were put on hold.

So, where am I now?

Well, the interferon treatment is just a bad dream from the past. I have put looking after myself at the top of my priority list – I try to eat right, I go to gym 3 times week, I watch myself carefully and visit my dermatologist regularly.

I continue to be interested in all aspects of cancer, but must admit that I don’t read all the blogs as much as I used to. I attend cancer support group meetings, but only if I don’t have anything more interesting to do!

The main problem I have, if you can call it a problem, is that I have far too many interesting things to do. Over the last year I built up a backlog of tasks, projects and ideas which needed doing, and now I’m trying to catch up. And I’ve had to do some serious soul-searching about my priorities – One just cannot do everything. So many things are still sitting on that list and will just have to wait until the time or opportunity presents itself.

I suppose the most significant thought is this: I was happily busy with my life when cancer came along and booted me up the backside. But painful as that was, I got through it. And there is life on the other side.

Week 66 – Oxygenation, Vitamin C & Anti-oxidants

2007-07-02T22:15:00.000+02:00

A couple of weeks back I attended the monthly meeting at my local cancer association. This is a kind of a cross between a support group and a general information session.

The speaker for the evening was to talk on “integrative medicine”, and I didn’t really know what to expect. Well, it turned out that he was a trained medical doctor, but also a homeopath, and the term “integrative” means that they try to integrate both conventional medicine and other treatments.

As the session went on, I found that I was getting really annoyed and cross with the presenter. I argued with him a few times, and after a while I decided to leave, as otherwise I was going to have a stand-up slanging match, and spoil the session for everyone else. I felt he was behaving as a charlatan, and this to a group of people with serious problems and serious concerns. Let me give you a few examples:

>>> He mentioned that he was giving one of his patients either oxygen treatment or ozone treatment – I can’t recall which it was. I know that there is absolutely no benefit to be obtained from these so-called treatments, and they can also be downright dangerous. To give the impression that this is accepted medicine is downright dishonest.

Those who support oxygenation claim that toxins damage the oxidative metabolism of normal cells which then regress into anaerobic metabolism, resulting in cancer. Hydrogen Peroxide and ozone are the substances recommended. The original claims were made over 50 years ago, and are extremely simplistic approaches to complex problems. There are no reputable published studies to support any of the claims made for these substances.

>>> He made an unsupported statement that the “majority” of drugs and medicines prescribed by doctors today have not been properly tested, and in fact are simply sold by pharmaceutical companies on the basis of dubious theories. He may in fact have been referring to the practice of using some medicines for purposes for which they have not been tested or certified (“off-prescription” usage) but this was not how I understood him. It seemed to me that he made the statement in order to justify the fact that many homeopathic remedies have not been subjected to proper testing, and without published results.

>>> I know that vitamin C is important in one’s diet. However, he perpetuated a belief that vitamin C in very large doses could cure or avoid all manner of ills.

In 1970 Linus Pauling claimed that taking 1000mg of vitamin C every day would reduce the incidence of the common cold by something like half. In 1976 he recommended even higher dosages, and by 1986 had expanded the benefits to include protection against heart disease, cancer and other diseases of aging.

I quote from a reputable source: “At least 16 well-designed, double-blind studies have shown that supplementation with vitamin C does not prevent colds and at best may slightly reduce the symptoms of a cold.”

His claims that high doses of vitamin C could delay the onset of cancer are equally misleading and unproven, and I will not detail them here.

To refer to Linus Pauling as a Nobel prize winner is misleading, in that it leads one to think that it was for his work on vitamin C that he was so honoured. In fact, Pauling’s first Nobel was awarded in 1954 for chemistry, and the second in 1962 for peace. There is no doubt that he was an intelligent person. His interest in vitamin C only developed later in life, and he continued to produce ever more radical statements. He died of prostate cancer at the age of 93.

>>> Another area which disturbed me was his insistence that antioxidants can greatly assist in preventing heart disease, cancer and other conditions associated with aging.

So far, the results of clinical trials have been mostly negative. There is epidemiological evidence indicating that greater antioxidant intake is associated with lower risk of disease. There is some argument for additional supplementation of vitamin E. However, once again it appears that the major benefits are obtained by consuming a balanced diet with emphasis on antioxidant-rich fruits and vegetables and whole grains.

I could bring out some other areas which annoyed me, but I think the above is sufficient to get my point across.

The presenter had access to a large amount of information which he slotted into his presentation: Facts, figures and statements, as well as highly technical arguments. And much of what he said was above reproach, and good advice. As with the AIDS-denialists, it is difficult for the layman to understand what is being said, never mind question the details and supporting information. The result is that people go home with reinforcement of “popular” misconceptions.

And this is what I object to: Any cancer organization should be seen as providing up-to-date and reliable information. It should not allow itself to be used as conduit for questionable ‘cures’ and quacks.

The audience consisted of a wide variety of people with one thing in common: They are cancer patients. Some are in remission, as I am, and grateful for it, but keen to learn more about it, and what they can do to prevent recurrence. Others are recovering from surgery, or on radiation or chemotherapy, and not sure what is going to happen to them. One or two have very serious problems for which they have been told there is not much further that can be done. All of these people are under stress, and some will be clutching at straws.

There is much to be said for being optimistic.

But I really object to the presentation of ideas which are downright misleading. It may lead to people rejecting what their more conventional doctors say or recommend. Or it may lead to people putting their faith in a questionable therapy, and delaying the correct treatment until it really is too late.

Week 64 -Why do we fight

2007-06-23T17:10:00.000+02:00

Why do we fight against cancer? Once you have cancer you are surely going to die. Maybe you can postpone the inevitable, by surgery, chemo or positive thinking, but sooner or later it will catch up with you. Surely we should simply recognise the facts, get our affairs in order, and resign ourselves to the inevitable?

I have read many stories of people who developed cancer or other serious diseases, and the main thread is always of someone fighting and fighting, gloriously, until the bitter end. Even the obituary that reads “… after an illness bravely borne…”. As if we go into battle knowing that the odds against us are stacked, and show enormous bravery in the battle.

Is it really like that?

An old friend of mine was ill with lung cancer. Not a serious problem, he said. Just one or two spots in the lungs. We’ve caught it early. We’ll cut them out, and after a few weeks I’ll be back at work. Well, it was not quite so simple, and they had to remove much of one lung. I wanted to visit him, but he said “Wait until I’m a little stronger.” Well, he did recover somewhat from the surgery, but the cancer had spread, and new spots appeared. After more surgery, he continued to be optimistic. And indeed did appear to be recovering, even went in to his office for a while. But the cancer spread more and more. And eventually he passed away.

Surely he should have known at the start that his end was near, and not bothered with all the surgery?

Over the last few years I have read many similar stories. I read again and again of someone who has stage III or stage IV melanoma, going through surgery and various kinds of therapies. Much pain and suffering, both for the patient, and for friends and family. I think “Why is this person doing all of this?” Surely it’s obvious that it has progressed too far for the current state of medical science to do anything about it. Surely he can see the writing on the wall, and should rather concentrate on what is most important – living out the remainder of one’s life, however short it may be, without entertaining false hopes of a miraculous recovery?

Why do we fight? That is the question.

For me the answer is tied with why we live and survive in the first place. Living in the modern world, with our knowledge, education, high living standards, communication and all the rest, we do not see what a battle it is just to survive. To be brought into the world. To be nurtured until we can stand on our own feet. To get enough food to eat. To be protected from the elements. To avoid accidents. To avoid threats from animals and other tribes, who would be only too pleased to take over our possessions, caves, animals, families, … To fight against diseases.

So, when I cut my finger and blood flows, do I roll over and wait for death? No, that would be stupid. I will fight against it, give myself time to recover, and have a reasonable chance of surviving.

If I break my leg and cannot walk? What then, shoot myself? Of course not. I give it care and attention, and with time and luck and good care it heals, and I can walk again, even forget it ever happened.

And so we get to the more serious afflictions. Whatever happens to me, I try to work out the best way of getting around it, the best way to recover. Whatever it takes.

And so it is with cancer. We are learning much about cancer: How to avoid it; How to cut it out; How to fight it with medicine and radiation. And not all of these will be successful.

But to give up?

The answer lies in one word: Hope. If we are not able to look forward with hope, then the battle is indeed lost. We need to keep hope alive, whatever the odds stacked against us. And this means to fight: With everything we have at our disposal. With surgery, medicines and drugs. With prayer. With positive thoughts. With music. With love.

Is it so surprising that people fight to the very end?

Written in memory of John, Bob, Robin, Margie, Sarah, Kim and all the others out there who have fought the good fight.

Week 59-60 - Season of mists

2007-05-21T00:00:00.000+02:00

Windy Autumn leaves

I have not had much to say relevant to melanoma and interferon, except that it is SO........ nice to feel normal again, be able to exercise without fatigue, and get back to all the things I want to do.

We have had a very mild Autumn here on the highveld - "... think warm days will never cease" - But the winter has at last arrived, and with a vengeance. From daily temperatures around 23-25 C, our minimum this morning was -1.2 C, and now at midday it has got as high as 7.5 C! Lovely blue skies, and I am working in my study with two very happy dogs lying on the carpet in the sun.

I have always loved Keats' work, and I'm sure you won't mind a little reminder...

Enjoy!

To Autumn
by John Keats

Season of mists and mellow fruitfulness,
Close bosom-friend of the maturing sun;
Conspiring with him how to load and bless
With fruit the vines that round the thatch-eves run;
To bend with apples the moss'd cottage-trees,
And fill all fruit with ripeness to the core;
To swell the gourd, and plump the hazel shells
With a sweet kernel; to set budding more,
And still more, later flowers for the bees,
Until they think warm days will never cease,
For summer has o'er-brimm'd their clammy cells.

Who hath not seen thee oft amid thy store?
Sometimes whoever seeks abroad may find
Thee sitting careless on a granary floor,
Thy hair soft-lifted by the winnowing wind;
Or on a half-reap'd furrow sound asleep,
Drows'd with the fume of poppies,
while thy hook spares the next swath
and all its twined flowers:
And sometimes like a gleaner thou dost keep
Steady thy laden head across a brook;
Or by a cyder-press, with patient look,
Thou watchest the last oozings hours by hours.

Where are the songs of spring? Ay,where are they?
Think not of them, thou hast thy music too, -
While barred clouds bloom the soft-dying day,
And touch the stubble-plains with rosy hue;
Then in a wailful choir the small gnats mourn
Among the river sallows, borne aloft
Or sinking as the light wind lives or dies;
And full-grown lambs loud bleat from hilly bourn;
Hedge-crickets sing; and now with treble soft
The red-breast whistles from a garden-croft;
And gathering swallows twitter in the skies.

Weeks 56-58 – Cancer can be good for you

2007-05-11T21:02:00.000+02:00

Apologies for not updating for the last couple of weeks. Just been very busy!

Read an interesting article last week, on prostate cancer. According to a study at the Audie L Murphy Veterans Hospital in San Antonio, men diagnosed with prostate cancer live as long as or longer than those without this diagnosis. They speculate that this is thanks to increased preventive and other therapeutic interventions for other medical problems. [Walsh RM and Thompson IM. Prostate cancer screening and disease management: How screening may have an unintended effect on survival and mortality—The camel’s nose**. The Journal of Urology 2007;177:1303-1306.]

The argument is basically as follows: After diagnosis with prostate cancer, which may not be immediately life-threatening, the patient is subject to other investigations, with a view to improving his chances of success if any surgery or other treatment is attempted. These investigations uncover other unrelated problems, which can then be treated. For example, heart problems would place the patient at further risk. Treatment to reduce or avoid these risks then leads to an improved survival rate, quite apart from the treatment for the basic condition.

Now this rang a strong chord for me. When I was diagnosed with melanoma, and had got over the initial shock, and started understanding what it was all about, I asked “What can I do to improve my chances of survival?”. The answer was not very encouraging. It appears that once you have melanoma cells floating around in your body, there are very few treatments which will guarantee to expunge those cells. Some treatments such as interferon appear to improve the chances of success. But, one study even went so far as to say something like “If you are destined to suffer recurrence, there is no treatment which we can currently apply to change this situation”. In other words, medical science really has very little to offer melanoma patients.

I investigated further. Surely there is something I can do? These are a few of the actions I came up with…

I was a bit overweight, and probably not eating very well. So I had some sessions with a professional dietician, lost a whole lot of weight, and in the process changed my habits to a much more sensible and healthy diet which I am continuing to this day. It may not have any direct effect on the melanoma, but it will make a large difference to my general life expectancy: I now have my BMI down to about 25, which allows me to say “I am not overweight”. [You don’t know your BMI, or you don’t even know what it is? …]

Get some exercise! It doesn’t matter what you do, whether it is cycling, walking, pushing weights, gardening,…. Just so long as you get some regular exercise. In my case I spend long hours sitting in front of my computer. This is what I do for a living! It is so easy to be lazy, and only get up to go to the toilet, or get a cup of tea! Or open the fridge and find something to eat… While I was on interferon I found this very difficult – Any excessive exercise made me really ill for the next couple of days. But after some experimentation I found a level which worked for me on a regular basis. And the funny thing about exercise: Whatever the level, it actually gives you more energy in all your other activities. So get off that couch and start doing something – anything!

Live a more relaxed life. Not so easy… Particularly when you are on interferon, what with the bad effects on sleep patterns, and the reduced physical and mental stamina. I was getting extremely irritable at not being able to do the things I wanted to, even though I had more “free time” at home. With help from everyone I came to accept, (albeit kicking and screaming…) that my ability to do things had been reduced, and I just had to plan accordingly. However, what I was also doing was building up a backlog of things which I wanted to do… Not so easy to come to terms with!

So, what is the result of all this good advice? Well, I am looking after myself better, even if there is not much that I can do about the melanoma except hope and pray. And looking after myself must contribute to living longer, and having a better life.

Week 55 – Cancer Support Groups

2007-04-19T21:29:00.000+02:00

This week I went to a meeting of the local cancer support group. For one reason or another I have not been able to attend for about six months. People there are a mixture of different types of cancer, and also people at very different stages in their journey. Previously I was very focused on melanoma, and it was important to hear about other problems, and realize the wider world out there.

I found that I was in a very good mood, and tried to be helpful and supportive where I could. I’m sure this is because I am now feeling physically better after a few weeks off interferon, but also because I am mentally feeling much more positive, after my last negative scans. But the meeting was also a damper, reminding me that I am only in remission, and anything can still change.

After my lack of success (I won’t call it failure!) in trying to set up a support group focusing on melanoma / interferon patients, I realized I had lost some direction. I want to do something; play a useful role in some way.

Coincidentally a friend of mine told me a story about a youngster, probably aged about 10, getting severely sunburned through spending 4-5 hours out in the sun at a school swimming gala. No hat, no sunscreen. Apparently the school had insisted they sit out in the sun for the duration. I don’t know how much of the story was true – kids can also “improve” a story if it suits them . (What, me being cynical? Never!)

So I talked it over with another friend, this time a teacher at a school where they have a firm policy that all kids must wear a hat when in the sun – Even during 10 minute breaks.

I contacted a social worker at the local cancer association, and today went along to meet her and discuss some possibilities. Over a cup of coffee I learnt what they are trying to do, and also picked up a few useful contact names. It looks like there are not enough people getting involved in the issue of skin cancer in South Africa, and there are some serious misconceptions, so I think I have found a way in which I can play a part, and hopefully make a difference.

We have a first cut of a plan – I won’t detail it this week, but will talk about it in future blogs. Now to do some research…

Week 54 - Marguerite Barker RIP

2007-04-16T18:38:00.000+02:00

Marguerite was taken from us on Saturday.

Margie has had some setbacks in the last few years. After a bad episode, her lung function was badly reduced, and she survived on a permanent oxygen supply. At home she had a machine which concentrated oxygen, and she could move anywhere in the house and garden, with the aid of a long plastic pipe. If she went out she had to carry a small oxygen cyclinder with her.

She was certainly at risk, but she soldiered on.

And then suddenly on Saturday she was gone.

Margie's life was always full of music, and she had many friends in the local music community. In the last few months she finally completed her PhD dissertation, in an area of music education.

Margie, rest in peace, and may there always be beautiful music with you in future.

Week 53 – Breaking new ground

2007-04-06T21:54:00.000+02:00

Well, not really – I have been here before, but it seems so long ago that I don’t remember what it’s like to not be on interferon.

Here are a few comments from my first week after stopping interferon. First, it is strange to not have to do this routine process every 2nd day – Remember to take a Panado tablet at about 6 pm; Do the injection about an hour later; Start feeling the effects within about 15-20 min. And then waking up every couple of hours during the night. I almost miss the routine…

The first noticeable difference is that I don’t have the immediate side-effects any more, and this is a real pleasure. But the longer term effects are still there, and will take some time to improve. So I still have lower energy, and get tired easily. The dizziness and light-headed-ness is still there, but seems to be getting better already.

Of course, I jumped in too fast: On Monday morning I decided to go to gym, for a gentle circuit. But I worked a little too hard, and by the evening I was feeling really lousy, and had to take a Panado and go to bed. But here’s the nice thing: Although I slept badly, on Tuesday I could feel I was recovering already. Previously I would have been physically down for at least another 24 hours.

And so it goes. Definitely feeling stronger, and able to take on more … within reason. Today I sprayed the roses. We are now up to about 25 bushes. Then I climbed up into the roof to check on a water leak, and while I was there I took the opportunity to remove some old light fittings – Been on my list for about 2 years! So this evening I have some stiff and sore muscles, but it is such a pleasure, because it is a much more normal feeling.

I notice also that I am feeling more able to tackle new jobs – Definitely a more positive attitude. This has been improving over the last few weeks, and now I am able to plan a new task, and actually get it done. It is so satisfying. I’m sure you will have picked up over all my writings that I am one of those people who does things – I always have a list of projects, and tasks. I get a lot of joy out of achieving goals. It works for me.

If you want something done, ask a busy person! I definitely fit that mold. For example, over the last two weeks I have built a fairly detailed outline for a new CBT training course I am developing, and I have started investigating various software products to use. I have also been exploring how to get voice artists, which I will need later on. (Expensive!) I downloaded some nice software to do my own recording and editing, and experimented with various microphones. I did some timings, and worked out that a good average speaking rate is about 2.4 words / second. So I have not been idle, even while on interferon.

I have also been working on developing a question pool for a (different) training course. We now have a pool of about 750 questions, of which we have flagged about 300 as no longer appropriate, or duplicates. I worked out a way to classify the relative difficulty of the questions, and we have now set the examination for May 2007 from the new system. In the past few years our pass rate has been too low (This is, after all, a hobby, not a professional qualification!) so we have been working out how to improve the pass rate by carefully adjusting the difficulty of the questions. I can’t wait for the results to see if our model will work correctly!

How did I get onto all this stuff? I was talking about being busy, and still taking on further work. Some of this work just has to be done – The roof leak was not planned, and now I will have to fix it, and then repaint the ceiling in my wife’s study. Not a difficult job, but it will take a couple of hours.

Then, there are some projects which were not on my original list, but seem to have crept in.

I “volunteered” to do some further work on the question pool, in time for a special exam which will take place also in May.

On Tuesday, I met with a friend of mine, who also happens to be the President of our national organization. We have a lot in common, and can spend many happy hours discussing how to make progress. I knew this meeting would be a “mistake”: I went along to get some help from him on a committee I am chairing. And I landed up with having to prepare a draft document which we hope to discuss with our equivalent of the FCC in the next month.

And then on Wednesday we had a discussion about our radio club… Without going into details, our main communication equipment is giving trouble, and the whole club is suffering. So, as I was available during the day, I went and fetched the offending device and brought it home, and started disassembling to find out what was wrong. This will take a good few hours work, which I hope to complete by Tuesday, when I can hand it on to the next expert who has the correct equipment to set it up.

How do I get into these things? Well, for one, they are important to me, and I like to see them move forward. They are generally quite interesting. I like to take on tasks which I can do, or which will stretch me. Achieving them makes me feel productive … And I have a reputation for getting things done, which I have to live up to!

Which brings me back to the interferon experience… You can see why I found it so frustrating, not being able to do all the things I wanted to do. It has forced me to accept that I cannot do everything. And this is good – I have always taken on large amounts of work. And sometimes this has raised the stress in my life to unbearable levels. I know I need to take on less, and reduce the stress rather than raise it.

For heaven’s sake, I am semi-retired! I have worked hard, and scrimped and saved, and I deserve to do the things I enjoy!

No title necessary...

2007-03-31T10:22:00.000+02:00

Week 52 - It ain't over till the fat lady sings

2007-03-26T21:21:00.000+02:00

I don't know whether to be relieved, or relieved.... It is still sinking in: I was more worried than I realised. But today I got the results of my full-body PET/CT scan, and it is NEGATIVE! So there it is: After a year of interferon, we appear to be winning.

I know that this is not the final picture. This melanoma could re-appear at any time. And we all have to die sometime - The only questions are how? and when?

But for the present, I only have two more interferon injections, and then I can start getting my body back to normal. I can't wait to get back to gym, and walk the dogs, and build up my strength again, and all the other things that I have put on hold over the last year.

Peace!

Week 51 – How to get through a CT/PET scan

2007-03-20T22:21:00.000+02:00

The big news this week is that I went for a “final” CT/PET scan today! I don’t have any results yet, and will only get that next Monday when I have an appointment with the oncologist.

I was so worried about the actual scan itself – more so than the possible results. At my first scan, a year ago, I suffered quite badly from claustrophobia, and had to take a couple of pills to get through it. So I was building up this fear in my mind. This time was longer, as they did two scans, covering from the very top of my head to the bottom of my feet!

I discussed my fears in advance with them, and I was given a dormicum tablet, and this helped greatly. Also, a couple of weeks back I decided that I had to prepare myself with some positive imagery, and I planned to spend 20 minutes every day practicing. However, I somehow “forgot” most days, so I did not do much practicing. I think this was because I really wanted to put it out of my mind, and put off the evil day.

Anyway, I did use some imagining, and it seemed to have a good effect. I chose as a subject the beach at Sedgefield, in the Eastern Cape. We have been going there for close on 40 years, and I know and love this place. I pictured myself getting out of the car at the beach, walking down the old wooden steps to the beach, then taking off my shoes before walking down to the water. I walked along the beach, getting my feet wet, and remembered all the nice things I have seen there: The gulls, who never let you get too close; the periwinkles which breed in the sand; the occasional piece of dead jellyfish, which drive the periwinkles wild – must be good food for them! The Black Oystercatchers, which are protected on these beaches; Once we even found a seal which came up out of the water and was sunning himself on the sand. The beach runs on for a long walk, around a small bay, and over some rocks, until you reach a small island which we call The Sphinx.

Anyway, you get the idea. I found I could picture myself there, and it helped to take my mind off the scan. When I tried this at home, I found it so relaxed me that I went to sleep, and woke up 10 minutes later, wondering where I was!

The scan must have been worrying me more than I realized: When I got home I felt rather flat… And had to think carefully what I wanted to do for the rest of the day. I think I was concentrating so much on the scan that I could not think past it.

So next week I will find out what the scans show. I am “cautiously optimistic” that the scans will be completely negative! We caught the original melanoma fairly early on, and I have been on interferon treatment for almost a year. I had some chest and torso ultrasounds a few months back, which showed nothing. And those of you who have been reading my blog know that I have been working hard to do everything in my power to make the treatment a success. I lost some weight, I have tried to keep active, both physically and mentally, I have improved my diet, and I have been taking some good vitamin supplements. I have also been watching my health, and have probably overdone the visits to the dermatologist!

So, next week all will be revealed!

On another topic, I continue to be amazed and impressed by the wonderful (and sad) stories I have found on the internet. The stories are unique, each written from the heart by someone who is battling this scourge. Each person brings a new view, and I have found enormous strength in reading them. Not all the stories have a happy ending, and I have cried at a few of the losses. For a while I stopped reading other stories, as they just made me too sad, and I felt I could not cope with them.

With the way the blog world works, these stories remain on the web, and are still accessible, unless someone has taken the trouble to remove them. I’m sure this is not an original thought, but I wondered about whether one could collect them together in some way, to make then available to those who will follow us. I first thought of publishing them in a book. This may work to some extent, but a book is limiting in many ways: It would become fixed at a point in time, and miss out on new additions. Also, it would be fairly complicated to obtain authorization from each author, or author’s family, and this could further limit the range.

Another way would be to simply publish an index on the web. This would point to the original document, wherever it may reside. I don’t see any problem in doing this, and I don’t think anyone would object, as the source material is already available in the public domain.

What do you think? Could we start such a list? Or has it been done before? It could be a combined effort, not depending on any one person, and could have a continuity all its own.

Week 50 – How to warn someone about skin cancer

2007-03-12T21:27:00.000+02:00

A couple of weeks back I was dealing with some family business, and I spent some time standing in queues at a bank and a government department. In both cases I was there for what seemed like ages, but was probably only half an hour or so.

When you are in a queue there is not much to do except observe the other people around you. If you brought a book or magazine you could at least read. Talking on the mobile phone is a no-no, but you can catch up on some text messages.

So, I was behind a nice lady in this queue. It is late summer here, and she was dressed in a sun dress. I always notice girls with a nice tan… But I couldn’t help noticing that she had a couple of suspicious looking moles on her shoulder and arms. Now, over the last year I have learnt a lot about skin cancer. I know that not every mole is dangerous, but I also know that it is better to see a dermatologist early rather than late.

So, what to do? I think all of us in this melanoma boat have been through the same experience: To start off with we probably don’t take it seriously. And even if we do, we think it will be easy to “fix” the problem – a little liquid nitrogen, or some minor surgery, and the problem will be gone. But if it develops into melanoma all the simple rules go out the window.

I know from many visits to my dermatologist that he can take one look at a mole or mark, and almost instantly classify it – usually as something benign. But when I was first diagnosed with melanoma, it was slightly different. He removed a small growth, and sent it away to the pathologist. I did not really think much about it, but he called me very early the next Monday morning, and wanted to see me immediately. And within another day I was in the clinic for some surgery to remove more material from the site!

So, what to do? Should I introduce myself in the queue, in front of many other people, and suggest she should see her GP or a dermatologist? Will she just get embarrassed, or will she get upset or worse, and tell me to mind my own business? Or will she think I am trying out a novel way to meet girls, and just ignore the whole issue?

I suppose we need to recognize that each person has their own life, history, and problems, about which we know absolutely nothing. So it would be dangerous to jump in and assume that our approach would be understood. In this country, there could be language differences. The lady-in-the-queue may have a skin ailment, and may be only too aware of it … and will not be happy to have attention drawn to it in public! Or she may have a more serious problem, such as HIV/Aids, or eczema, acne, psoriasis, or even shingles.

So, there seems to be no easy way to decide what to do. I have found in other circumstances that a good way forward is to tell my own story, even if only briefly. This will set the scene, and establish my credentials – Not a pick-up line, etc. Then one can decide on whether to raise a concern, and suggest a course of action. Not so easy to do in the queue at the bank!

Makes sense to me.

Week 48-49 – Cape Town family visit

2007-03-08T14:44:00.000+02:00

Been away in Cape Town for the last week. Catching up with all the family, and doing all the holiday things. Eating too much… I put on about 2 kgs in 7 days – not too good!

Started off feeling quite good, but after a few days it all caught up with me and I had to take a day off – Spent some time reading and generally keeping quiet. However much I would like to ignore it, the interferon has a continual effect. Some days are better than others. I have learned to take it as it comes – It is just very frustrating to want to do more than I can, and then be hit by fatigue for a day or two.

On Monday morning we went out early with my-nephew-the-pilot for a flip around the peninsula. Was absolutely fabulous, no bumps or turbulence. About an hour’s flight was over much too soon! This picture shows Table Bay with Table Mountain in the background, and a good view of the ever-present “tablecloth’ on top.

The mountain is just over 1000 metres at its highest, and it forces the wind to rise rather rapidly. The tablecloth forms at the level where the dew point causes moisture to condense. Although it looks static, if you watch carefully you can see it continually forming on the one side as the air rises, and evaporating again on the other side where the air drops.

Cape Town is one of my real favourites. We spent a year here on a contract, and I spent many weekends trying out all the climbing routes. Now that I am on interferon it is really frustrating – knowing I can’t do any climbing! But in a month’s time that will be over and I hope to be getting my strength back. So the next visit I will pack my boots again.

Tuesday we flew back home. Getting up early and getting to the airport etc was quite a strain. But once we were back home I really felt lousy – I think what really made it worse was leaving sea level, and returning to altitude – We live at about 1600 metres above sea level, and there is definitely less oxygen at this altitude!

Had a call from the PET/CT scan people today, and now I am scheduled for my scan on 20th March. I don’t mind admitting I am very apprehensive about this. But I have something great to look forward to, and that is getting to the end of the interferon treatment.

Week 47 – Counting the days

2007-02-21T14:28:00.000+02:00

Well, dear reader. Do you think I am going overboard with my count-down to the end of interferon? I thought about this for a while, and decided To Hell with It! I have done almost a whole year, and I am now seriously looking forward to not being on interferon, and getting my life back to something approaching normality. I am trying to imagine what it will be like to wake up in the morning without all my muscles feeling sore. And having a full night’s sleep is something I have not had for a long time.

So you will just have to bear with me as I count down!

I have been feeling a lot better lately. I don’t know if this is just because I can now see the light at the end of the tunnel, or some other factors. I mentioned before that I have been taking a rather good food supplement and this may have something to do with it. And I have been getting regular exercise, mostly gardening, but I have managed to get to the gym a few times this year.

So I am looking forward to the last injection at the end of March. Then I will have another PET scan, check bloods etc, and another visit to the oncologist. Suddenly it is all happening! And I am feeling cautiously optimistic that nothing new will be found.

We want to go away for a week once I am over the interferon. It will obviously take some time for my body to get used to not having interferon – Are there any withdrawal symptoms? – And it will take some weeks for my bloods to get back to normal. So, another adventure to look forward to.

Wish me luck! And I wish the best of luck to all of you out there too!

Only 18 shots left

2007-02-18T13:17:00.000+02:00

Week 46 – My Valentine’s wish to you

2007-02-10T13:19:00.000+02:00

Roses are red,
Violets are blue,
Only 20 more shots
And then I’ll be through!

Over the last few years I allowed our garden to get rather out of hand. In the early years we had no trees and very little shade. Now, the trees have grown up and we have almost too much shade.

I neglected my rose garden, and half the rose bushes died over a period of years. In the last couple of months I have been giving it some attention. Lots of water; regular fertilizer; regular spraying; and lots of TLC. And it is amazing how the roses have responded. They will need more attention, and proper pruning, and should do very well next season. For the present, I am concentrating on getting the plants to build up strength before the winter. I will also fill in some of the gaps with new plants next week, so that they can get their roots established before winter.

Week 45 – Getting back to your life before interferon

2007-02-10T13:13:00.000+02:00

[I’m sure I have written about this topic before, but I can’t find it. It may have been in an email to someone. So I apologise if I am repeating myself!]

Setbacks are a normal part of life. Hopefully one gets over them, and carries on stronger and wiser.

When you have a cold, or dose of flu, you feel bad for a while. But you take your medicine, get lots of rest and liquids, and within a short time you forget all about it. If you break a leg, you put it in plaster, rest it, go through the physio, and within a short time it becomes history. Here in South Africa we live in a violent society: There are many people who have had their vehicles hijacked at gunpoint, or suffered robberies in their homes.

But people generally recover from these setbacks. They are usually quick, unexpected, and temporary. Of course they may leave some scars, physical or mental.

So what about this melanoma and interferon experience? Well, in theory you are diagnosed, and then do the treatment for a year. The treatment is not nice, but for most of us it is bearable, and however bad it may be, you can look forward to the end of the year with relief and optimism. Then you have a final set of scans, and celebrate with a party, or a world cruise!

And you can get back to your previous life. Everything that you put on hold can now be taken up again. You get back to work, meet people, buy the groceries, take up new hobbies, drink wine again, have a romance, spend more time with family and friends, and so on.

But however much you would like everything to revert to the way it was, this will probably not happen. Because YOU have changed over the year. You have learned a lot about melanoma, and it has put a different complexion on the world. You have learned that you are mortal; that none of us lives for ever. You have learned the value of just existing in the present, and enjoying life for what it offers you. You have learned who your real friends are. You have learned to enjoy beauty wherever you find it – In music, in nature, in people, and in whatever you do.

And you have learned patience! Each time you do the self-injection you know you will feel lousy, but you go ahead… Because it is important for your future, and because you know that however it affects you, you will start to feel better the next day. And those days when you feel good are wonderful! Who would have thought how wonderful it is to wake up in the morning, have a cup of tea or coffee, and look out the window at the world, and know that you have another day in which to do things, or not as the fancy takes you… Read a book; have lunch with a friend; wash your hair; all the simple and mundane things are wonderful, because you are alive!

So, does one simply put it all aside? It’s over, like the broken leg, like that bad dose of flu?

I remember many years back working on some statistics for our business school. In this country, many MBA students are subsidized by their employer. This can be a fairly major investment for the employer. We discovered that a fairly high proportion of MBA students would change their jobs very soon after completing their degrees. The company who had footed the bill would probably get back the costs, either from the student, or from his new employer. But two years have gone by, and the company has lost out on someone who they were grooming for greater things in the future.

So, why did so many move? In some cases it may have been salary related. But the main reason was that each of those students had themselves changed. They had learned much about business, but also much about themselves. And realized that they did not want to work for a furniture company. (IT, bank, farming,… You name it). Or they realized that they wanted to work for themselves, and build up their own venture. Or, as one student did, give it all up and move to Spain, and start a donkey trekking business.

The bottom line to all of this is that one should not expect to find everything unchanged. Your view of life has probably changed more than you realize. You may go back to your job, home, hobbies, etc, and this stability will be valuable. But you may also find that some things are no longer as important as you thought they were.

You have some new priorities in life.

Week 44 – Getting to grips with frustration

2007-02-03T14:04:00.000+02:00

[Start of rant]

I know this interferon creature quite well now. As regular as clockwork I do the injections and feel lousy for a while. I keep telling myself that it is only temporary, and after a day or so I will feel more or less normal again. For many months now I have battled with the frustration of not being able to do all the things I would like: The feeling of tiredness and lethargy, light-headed when I stand up or try to do some physical exercise; aches and pains all over my body.

Even though I fight against it, I have got resigned to not being able to do everything I would like. In each week I know I will have three lousy days, three better days, and one bonus day extra. So I have scaled down my expectations of what I can do. I have a lot of tasks and projects, and I have just had to prioritise them. At one end of the scale are those things which must be done; At the other end are tasks which will just not happen, however much I would like to get around to them.

So, everything is under control, right? All I have to do is plod along until week 52, and then life can get back to normal.

Well, not quite. Every now and then something goes wrong with the plan. For example, the last couple of weeks I had a tummy bug – probably just a virus. Everyone says “there’s a lot of that going around!”, as if that makes me feel better. I felt lousy, run-down and weak. And the injections continue.

The result is that I just don’t get anything done: I used to have 7 good days in every week, more than enough for anyone. I have reconciled myself to a drop to, say, 3 good days each week, and I plan for that. But then something creeps in and the whole week becomes a write-off.

And I get so frustrated! I understand what is happening, and I know it will not last for ever. I know that next week I will probably feel better, and be able to get more done. But in the meantime there is physical pain, in not feeling well. And mental pain (= frustration). Even though I understand it, and I’ve come to grips with it, the pain is still there… All I can do is grit my teeth, and carry on, looking forward to week 52.

[End of rant]

Week 43 - A view of the cosmos

2007-01-28T14:03:00.000+02:00

I started off this last week full of the joys of living and keen to get a whole lot of tasks done. I thought my digestion was back to normal, but that was not so – Every second day I feel a bit more normal, and then do a little exercise, and then I have had diarrhea and cramps, so I have had to backtrack and look after myself much more carefully. Seems to be working, but my body is responding very slowly while on interferon.

So this week I kept a low profile – For two days mostly horizontal! – and caught up on some reading. Funny how when you’re not feeling good, you also don’t feel like reading the things you should. I found I had to goof off, reading Robert Parker stories, which are fun and don’t take too much concentration. I have a few books and magazines on my bedside table and keep intending to read them, but you know how it is … The road to hell is paved with good intentions, etc!

You remember the story of Goldilocks and the Three Bears I’m sure? When Goldilocks tasted their porridge, the first was too hot, the second was too cold, but the third plate was just right! The topic of just why we live on a planet / in a galaxy which seems to be just right for life has been a hot topic for some years now. First the anthropic principle, as it was called, had some bad press. But times change, views change, and now everyone who is anyone has something to say on this. So I have been reading Paul Davies’ latest book, The Goldilocks Enigma. Davies sets out to give a quick summary of the state of knowledge, and all the new theories, about the cosmos, and then use all of this to explain exactly why our world is ‘just right’.

The problem with trying to write a book like this lies in identifying the target audience. If you set your sights too high, and assume that readers are already familiar with quarks, leptons and bosons, not to mention dark matter and dark energy, then the number of people who would buy the book will be very small indeed. At the other end of the scale, if you write it for a mass market (Sunday newspaper; television…) then you really have to leave out most of the important and interesting detail, and cut directly to the final conclusions. It is no easy task.

I think Davies does an admirable job, but this book is not for you if you don’t already have a scientific background. The problem is that, to get to where he is going in the discussion, he has to teach the reader an enormous of stuff. So, I found this an excellent book to bring me up to date with current knowledge and ideas in cosmology. But I keep wondering how many people will buy the book, read the first few pages, and then put it aside when it gets too difficult!

So what is the relevance of the picture on this page? Well, after all this discussion of cosmology and the wonders of the cosmos, dark matter, string theory, etc, I was reminded of the glorious Cosmos flowers which grow as weeds, and start flowering from now until late autumn all over the region where I live. Cosmos comes originally from Mexico, and has made itself at home on the eastern highlands of South Africa. The show depends to some extent on the early summer rains, so is different from year to year.

Week 42 - Cape Town wedding

2007-01-13T20:39:00.000+02:00

Posting this from my sister’s house in Cape Town. We have just attended my niece’s wedding – This is the second wedding of this generation. The bride looked absolutely fabulous, and it was a nice friendly occasion.

Last week I thought I had just tried to do too much. But it turned out that I had a bit of a cold, and for 2 days I had a sniffly nose and did not feel at all good. At the same time, I lost a filling from one of my back teeth, and have a very sensitive tooth – And my regular dentist is away until next week! Having been on interferon for so long I relate everything about the way I feel to the regular injections, and probably miss the cues to the other minor ills one goes through.

I had a careful plan about my injections. I timed it to do one injection on Thursday evening, and then fly to Cape Town on Friday morning. The flight should have been easy, but we left rather late for the airport, and then as luck would have it there was a quite severe traffic jam due to earlier accidents. We only just made the flight, and had to park in the expensive short term parking area. The end result was that I got really stressed and tired. Then I decided to see a local dentist about my sensitive tooth, and this just made everything worse.

I have not had digestive problems before, but the last week my stomach has not been stable. Generally I feel OK when eating, and it is very rare for me to feel sick. But I have been having stomach cramps and some diarrhoea. Hope that it goes away soon!

I know I’ve said it before: While on interferon, everything is more complicated. You have to plan your life carefully, and then make sure that you allow for unexpected problems. It’s not so easy, but the priority must be my own health, and to keep on with the regime while removing the stresses of living. Everyone needs support from friends and family, and I’m so lucky that I have this.

Cape Town is a lovely city, and most of my family live here. This evening the rest of the family have gone out to eat fish and chips and watch the sunset at Fish Hoek – Something I have always enjoyed. But I need to do another injection, and decided that I just need to take it easy and have a relaxing evening. However much I would like to believe that I have this interferon under control, it still makes me feel lousy for 24 hours, sometimes less, sometimes more, so here we go again, and hopefully I can then enjoy the rest of the weekend.

Week 41 - Don't get carried away

2007-01-08T13:05:00.000+02:00

I got this card some time back and had to share it with you!

Very short post this week. After shooting off my mouth in my last post, I did far too much work on Sunday - Gardening; working on my antenna tower; and sorting out and tidying my desk and study. By the evening I was not feeling good at all, and had a very bad night ... Almost the same as immediately after the interferon injection! So today I am taking things very quietly and slowly ... When will I learn!

But the nice part is that I am making good progress.

This next weekend we fly to Cape Town for my niece's wedding, and will be away for four days. I have done some careful calculations on the calendar, so that injections will not interfere too much. During Christmas I actually advanced my injections to fit our social life, so I have a "credit" of two days which I can now cash in when needed.

Week 40 – A new beginning

2007-01-07T12:55:00.000+02:00

The end of the year has always been a time for me to clear out the debris of the last year, and start looking forward to the New Year. Every December, once year-end exams had been written, I would do a major spring-clean of my room. Throw out all the notes from studying; file all the notes worth keeping; and generally clear my desk. At the same time I would discover all the books and magazines I had intended to read, and projects not yet completed…

As the years have passed I continued the tradition. The end of the year, with Christmas, summer holidays and celebrating the New Year is a time for clearing out all the rubbish which has accumulated, and clearing the decks for action in the New Year.

And this year has not been an exception. A few months back I would have found it very difficult to look forward positively. But all that seems to have changed… I am now very positive, and looking forward to the future.

I suppose the main reason is that I am now over 75% of the way through interferon treatment. And so far there has not been any recurrence of the melanoma. Obviously this does not mean that I will not have any challenges in the future, but it’s good enough for me at this stage!

A year out of one’s life seems like a long time. Particularly when one has had such a shock as melanoma … A year seems more than a lifetime. But time is inexorable – It carries on at its own steady rate, and the one thing we have no control over is time. And suddenly I can see the light at the end of the tunnel, and I’m starting to see the opportunities once I get out of this tunnel.

The time I have spent on interferon has not been wasted: - quite the opposite. It has given me a chance to catch up on many projects at home; I have been able to catch up on reading; I have spent time with friends and family. I have developed a better idea of what I want from life, and what I can bring to others.

And I think I have come to grips with my mortality. The young are totally convinced they will live for ever. But the one thing we all have to meet at some point or other is death: With some religious exceptions, no ordinary mortal has managed to change this simple fact. It’s not how long you manage to live: What is important is what you make of your life, and this is different for every one of us.

OK, enough preaching and moralizing!

I am also feeling much better. I still do the injections 3 times a week, and don’t feel too good after each dose. But I am doing much better than 6 months back, when I would barely recover from one injection before the next one was due. Perhaps my body is getting more used to the interferon, and is able to cope better.

But I think the main impact has been a new “nutritional supplement” which I have been taking for the last few weeks. Now, I tend to resist any wonderful new supplement, particularly if the manufacturer spends a lot on advertising. There are far too many vitamin and food supplements on the market – just look at how much shelf space they occupy in the stores. This particular supplement was recommended by his surgeon to my brother-in-law, after he had some rather nasty, major surgery. This product is soy-based. What I particularly liked is that it provides about 20% of the RDA for most vitamins and minerals, and provides 21 amino acids. It comes as powder which you mix with milk – The regular milk dose will obviously also provide some benefits.

Anyway, I am not trying to sell it to you. But I found that after about a week or so, I was recovering from each interferon injection much more rapidly. Whereas I previously needed at least 24 hours or so before I felt normal, I now need less than 12 hours. A few times I have been up at 6am to do some gardening, before the day gets too hot. Provided I don’t overdo it, I also seem to avoid the previous feelings of tiredness and exhaustion.

As a result, I have also been getting much more exercise. I have been doing a lot of gardening; done some work on the car; and made steady progress with my antenna project. I’m sure that getting more exercise contributes to feeling better… It is like a positive feedback cycle: The better I feel, the more exercise I am able to get, and then I feel even better.

So, what’s the bottom line to all of this? Well, I am feeling good, and also very positive about the future. I still have 3 months to go on interferon, and I’m not sure whether I want to try to get any work now, or wait until I am completely finished treatment. I work as an independent consultant, and have to go out looking for each contract. There can be a long lead time (unless you are lucky!), so I have decided to start developing my contacts and skills, with a view to getting some contract work by April or May. So, starting tomorrow (Monday) I will set aside 3 hours each day specifically to get back into work mode.

But it’s tough: I am really enjoying this sabbatical!

Week 39 - Christmas memories

2006-12-30T08:32:00.000+02:00

When I was young we celebrated Christmas twice. The first was the traditional Dutch Sinterklaas which we celebrated on the night of 5th December. Every year St Nicholas would reward good children, or punish unruly ones, assisted by Zwarte Piet (Black Peter). My Dad would play the piano, and we would sing the old Dutch Sinterklaas songs: Zie ginds komt de stoomboot uit Spanje weer aan…, (“Here comes the steamboat from Spain again…”), Hoor de wind waait door de bome… (“Listen to the wind rushing through the trees”) , Zie de maan schijnt door de bomen… (“See the moon shining through the trees…”), and the lovely short plea Sinterklaas Kapoentje (“St Nicholas I beg of you, drop something nice into my little shoe…”)

The evening was very exciting… My Dad would sneak out of the room without us noticing, and then there would be a rat-a-tat-tat on one of the doors or windows, and when we rushed to see who was there we would find a small present for one of us. He would also wait until no-one was looking, and throw a handful of sweets across the room – That was Sinterklaas or Zwarte Piet dropping sweets down the chimney! This was quite believable to us – As this was in mid-summer there was no fire in the grate! I think the presents were quite small, and the “real” presents would have been kept back for Christmas.

For many years we received a special parcel from Holland, containing all the Sinterklaas goodies and sweets: Speculaas, Marzipan, Pepernoten, Kruidnootjes, Taai Taai, and large Chocolate letters, one for each of us in the shape of our initials. Everything was securely packed into a large square tin, suitably sealed against moisture or drying out, and then wrapped in cardboard and brown paper, and tied up with string.

We always had a Christmas tree. My Dad would drive out somewhere and cut a few branches from a pine tree – This would be the local “South African Pine”, with long needles. As it was midsummer the trees would be at their best. Then he would construct a realistic looking tree in the lounge, using wire and nails. Then would come the decorating with cotton wool for the snow, tinsel, coloured glass balls, and a star for the very top of the tree. In the earlier days we had real candles on the tree, and we had to watch them when they burnt down.

As the city developed it became more and more difficult to find pine trees to cut, and these days one has to buy a branch or two from the local Lions club in the parking lot at the local shopping mall!

Christmas Eve was spent singing Christmas carols, and listening to music on the radio. Christmas morning the children would be up bright and early, and we were allowed to open our presents. I particularly remember one year when I received my bicycle… I was out like a shot and rode around the neighbourhood until I was exhausted. When we were a little older we first went to church, which had a special children’s service at 8 am, and then quickly home to open our presents. Then my Dad would drive out to fetch my grandmother, and one or two of the children would go along to distract her – She would talk the hind leg off a donkey, and my Dad needed some “protection” so he could concentrate on his driving. She would catch a bus (perhaps a tram in the earlier days) from her flat in Hillbrow to the terminus in Parktown North, where we would pick her up.

After a large Christmas lunch we had to listen to the Queen’s Christmas message, and then by late in the afternoon we would deliver my grandmother back to the bus or her flat.

How times have changed….

Week 38 - Aurora over Iowa

2006-12-18T10:34:00.000+02:00

I just had to share this glorious picture, taken last week in Iowa by Stan Richards. You can see the larger original and credits at http://antwrp.gsfc.nasa.gov/apod/ap061218.html. Kim, are you watching this from high over Iowa?

I have been thinking on and off about my grandmother Bep Hers-Ligthart. Born in 1888, she passed away in 1980. She is buried in a lovely cemetary in Krugersdorp, some 40 kms from where we live. It is high up, on a gentle slope with a tremendous view to the North, all the way out to the Magaliesberg mountains. I went out to visit her grave a few weeks back, and spent some time remembering her.

I don't know where we go after we die ... I don't have any strong religious faith. As an engineer and scientist I need to have visible proof. But it seems to me that people do live on after death in some ways. One way is in the minds and memories of other people.

While sitting under the trees I wondered if she was still anywhere near to her body, and the cemetary. I certainly felt close to her. And then I had to laugh at the picture I conjured up: Now, you need to know that Bep was an extremely strong personality, with very definite views. She left Holland well before the second World War and brought her three young children to South Africa where they made their home. And I just could not see her stuck anywhere near to her physical body... Just imagine what a cemetary would be like, with hundreds and hundreds of souls, each tied in some way to their physical remains.

"What? Me hanging around with all those other dead, boring people? I have nothing to say to them. Ridiculous!"

Week 37 - A neat project

2006-12-11T20:41:00.000+02:00

A couple of weeks back I was sitting outside chatting to my friend Colin. There was some thunderstorm activity around, and suddenly the siren on the golf course started sounding - A warning to golfers to make haste, and not to stand under the trees!

Now, one of my hobbies is amateur radio. ("Ham radio"). And this means that I have a couple of antennas high above the house. When lightning is around it is sensible to stop operating, and either unplug everything, or make sure it is properly earthed. We live in an area of very high lightning activity, and I don't want to put myself at risk any more than necessary!

So, we discussed how to build a simple lightning detector. I found some information on the internet, and looked through my workshop for all the components. I had most of what was required, and started on a thursday afternoon, and by saturday I had it complete. Here are a couple of pictures of the completed project.

It looks like a little radio, and in fact that's exactly what it is! But it does not pick up any stations, only the static of thunderstorms. Each time it picks up a lightning strike, the little LED flashes briefly, and there is a click from the small loudspeaker. On the righthand side is a standard DB9 serial connector - This provides an output from the detector which can be linked into a computer, so we can record all the strikes in future.

Here is a view of the innards, showing the little piece of circuit board and components, and the battery holder.

If anyone is interested in more information, send me an email at zs6phd@mweb.co.za.

If there are any hams out there who would like to chat I am accessible on IRLP node 8661 - Johannesburg (Sandton). My callsign is ZS6PHD, also ZS9P in the contests.

Week 36 – How not to set up a support group

2006-12-11T17:17:00.000+02:00

Prior to your diagnosis, cancer is something that happens to other people. And then suddenly your life is changed, and you have a whole new world to absorb. Starting on interferon treatment is a major change in your life. There is so much new stuff happening, and it can be quite overwhelming.

Quite early on I felt a great need to find support. I contacted the local cancer association (CANSA) and attended their general groups, but found these to be quite limited. I discussed it with the dermatologist, with the oncologist and my GP. They all agreed that more support was desirable, but how to make this happen? If you are lucky enough to have lots of money, or have good medical insurance cover, then at least the basics are covered: Doctor, oncologist, dermatologist, surgeon, anaesthetist, and hospital. These are the obvious services you need.

But unless you are extremely lucky, you find that each of these provides a very specific service, with quite clear boundaries: Each one handles his own speciality, and does not have time to help with the wider issues. For example, just try talking to your hospital about the psychological issues raised by the whole cancer diagnosis… Hospitals may provide excellent services, but they are not equipped to help beyond a certain point, and the best they can do is pass you on to (yet another) specialist.

I battled with this issue, and spent some time looking for assistance. And I did find some help, which I may write about in the future . However, it is not consolidated in any way – You have to go to different places and individuals for each piece of the puzzle.

Once I had found my feet, I thought about starting a support group in my home town. Initially I didn’t really want to commit myself too deeply, as I did not know how much load it would place on me, and frankly I was not sure that I wanted to take on additional responsibility at that time. Also, when I started out I didn’t feel I had much to offer other people. But eventually I decided that I did want to put some effort into this project. I discussed this with CANSA and they encouraged me, but at the same time I got the impression that it had been tried before, and had not been successful. In fact, one person told me that most newly diagnosed patients wanted to do something similar! (As if to say: There, there: It’s a phase we all go through, you’ll get over it!)

I started out working with CANSA. They suggested publicizing the new group via the local community newspapers, and on their web site. Well, we never did get a mention on their website, and it was extremely difficult to get any coverage from the community papers. I read a few of them very carefully, and I could see that many, many deserving organizations were trying to get some coverage. You have to do hard work to come up material which will interest the newspaper editors, and there is competition from much bigger issues. In South Africa, without a doubt our biggest challenge is HIV/AIDS, and other diseases such as tuberculosis and malaria are significant. Poverty in all its guises is a serious problem in South Africa. In the cancer spectrum there are awareness campaigns for breast cancer, prostate cancer, etc, and this is followed by so-called lifestyle diseases: Lung cancer caused by smoking; obesity, diabetes, heart disease, etc…

Even if you manage to get some coverage in the press, there is no guarantee that you will reach the target market – In our case, people who have already been diagnosed with melanoma. The result of this exercise was a big zero: I only had two patients contact me, and both of them were referred to me via my dermatologist.

So about a month back I decided to have one more attempt. I reasoned that I am trying to contact a relatively small group of people. Using the general press to contact them is just not practical: The chances of hitting them are extremely small.

Now, you may be thinking that I have missed out the value of the internet. It’s true that I found the internet to be of tremendous value. www.mpip.org is a tremendous resource, there are many other good resources, and there are blogs of great value. But the penetration of the internet in South Africa is nothing like it is in the US or in Europe, so many people will just not have access to all the material. Add to this that broadband access is still in its infancy here, with most users having to pay per minute for slow dial-up access, and you can see that the internet will not help all patients.

So my new approach has been to contact patients via the dermatologists and the oncologists. In theory this will give me direct access to the specific target group, without wasting time with newspapers, etc. I obtained a list of dermatologists, and developed a mailing list. The oncologists were a little more difficult, and I had to start with a list of hospitals and clinics. After about a day of telephone calls, and a sore ear, I had a reasonably good list, and when I started to get duplicates from different sources I knew I was making good progress.

I put together a mailshot to all of these. Included was a covering letter to the doctor, and a supply of pamphlets with details of the support group and contact information. This went out about a month back. I knew it would take some time before I got any response, as the information has to reach each patient.

So, what has been the response so far? Well, I have to tell you that it is still a big zero! At this stage I don’t know where we are going wrong. Will it take longer than I expected before people respond? Have the doctors ignored my mailshot? Have I run up against the year-end summer holidays? Or is there really no interest in a support group?

In the meanwhile, I have started a simple web site which I will develop into a resource for patients in South Africa. I don’t intend to duplicate the excellent sites already available, so this site will contain some of the info I have previously published in my blog, and provide a useful reference on local conditions. See "Links" at the top of this page.

Watch this space…

Week 35 - A Good Week

2006-12-01T10:37:00.000+02:00

I must have been feeling very negative last week, but this week has been a great improvement. Feeling much better and making good progress on home projects. I decided to treat myself, and have spent the last 3 days working on a small project which was not on my list of things to do, but just caught my fancy. Will put up a picture next week!

How do you like my T-shirt? I got this made some time back, but for some reason I have not been wearing it. I suppose I don't want to have to explain to everyone!

Week 34 - Carpe Diem

2006-11-27T19:41:00.000+02:00

Not a very good week... I was going to sound off about how frustrated I have been getting. I make all sorts of plans, and then I don't sleep well, and don't feel too good, and somehow just can't get started, and all the bright ideas I had for the day just sort of go pear shaped! And I get to the end of the day, and have not managed to achieve even one of the tasks I set out.

OK, OK. I have learned that some days will be bad, but also that other days will be good. I just need to go with the flow, and take advantage of the good days when they do arise. Example: Most of last week I did not feel good. I had to push myself to finish some consulting work. When I reached Saturday I thought I would feel better, but just the opposite - I slept half the morning, and then pottered about for the rest of the day. Sunday I wanted to go out bright and early to see the new A380 Airbus arrive for a test flight at Johannesburg airport (Used to be called Johannesburg International, now renamed the OR Tambo International Airport). But I just could not get going. Anyway, it does not help to sit and mope, so after a while I got shaved and dressed, and we went out for a drive to see what we could see. After watching quite a few other flights arrive we realised that the A380 was parked in the service area. It was difficult to find a vantage point to view the plane, but eventually we sneaked into the office area, and found a window with a good view.

That was enough for me, and I came home feeling quite horrible. But we did see the plane!

This morning I did not feel too good, and I thought it would be another bad day. However, I went out with a list of things to do, and by lunchtime I had done most of them. And this afternoon I started on my antenna project, and made some good progress. After about 2 hours in the workshop I felt that I was pushing my luck - So I packed up, washed my hands, made a cup of tea and settled down to read the evening paper!

And after a while I even managed to spend half an hour tying up my tomato plants in the garden!

So here is the lesson: Some days will be bad, and some days will be good. When you get a good day, take advantage of it - Share your time between tasks which HAVE to be done, like the housekeeping, and tasks which you WANT to do, like all my projects.

Carpe Diem - Seize the Day

Week 33 – Interferon experience update

2006-11-18T13:08:00.000+02:00

The interferon process continues, with some ups and downs. I thought it may be useful to describe how it is affecting me, now that I am about 8 months through the year. I get the feeling that my view is very much how I am feeling at present, and I cannot remember what happened even a month back, never mind to the earlier days of this experience. May be interesting to look back on this sometime in the future…

I am still doing the injections three times a week, usually on a Monday, Wednesday and Friday evening. Some times I move the Friday injection to Saturday, so that I can do a business meeting on Saturday morning.

I have the injection process down to a routine. I use a self-injection pen which contains 6 doses. Each pen comes with 6 one-time needles. I take 1000 mg of paracetamol at about 6 pm and do the injection about an hour after that. I warm up the pen by holding in my hand for a few minutes. I am very careful to wash my hands beforehand, and use the pre-injection swabs to clean the skin. So far I have not introduced any skin infections. However, the skin around the injection sites does sometimes get red for a couple of days.

The actual injection is usually painless. The single-use needles are extremely fine and very sharp. Sometimes I feel a little pain towards the end of the injection. This may be from pinching the skin rather than the injection itself.

There is very little reaction to the injection at first. Within about an hour I start feeling tense and irritable, and have some difficulty in concentrating. Good to watch something mindless on TV at this stage! I generally have a bath or shower, and get to bed by 10pm. Although I don’t have much other reaction at this stage, I have found it is best to take another 1000 mg paracetamol when going to sleep. This gives me something like 4 hours sleep before I wake up with sore muscles. I generally try to take as little medication as possible, but this is a trap: If I only take 500mg then I sleep badly and wake up feeling worse.

By the morning all my muscles are a little sore. When I stand up I find my feet and ankles are sore, but moving around improves this. As long as I have had a reasonable number of hours sleep I prefer to have breakfast, shave and get dressed relatively early. Then I generally get some work done in my home office.

The interferon definitely affects my mental processes. I think I am almost back to normal, but every now and then something reminds me that I am not operating at my normal level. (Maybe this is partly getting older, but I hope not!) I find that I cannot concentrate on work if I have the radio playing in the background. When an interruption occurs I find it difficult to get back to where I was.

I find it difficult to decide what to do next… I have always been a fairly disciplined person, and I have lists of work and tasks of all sorts. But some days I find I am wasting time trying to decide what to do next, rather than just getting on with the next task.

When trying to work at my desk I sometimes find it difficult to concentrate. I have found that I can make good progress if I just press on, and try to ignore the interruptions to my thought process. I still seem to be able to sit down and concentrate on big tasks for a couple of hours, and I think the quality of my work is still fairly good – Just somewhat slower!

I try to get some exercise every day. This could be walking the dogs, or some work in the garden, or some physical work in my garage or workshop. I have to be careful not to overdo this, as it comes back and bites me the next day. But regular exercise seems to be good for me.

Feeling dizzy and light-headed continues. I notice this particularly if I have been sitting for a while, and then suddenly get up and walk somewhere. For example, if I drive to the shops, and then get out of the car and march around… I have to take it easy and let the oxygen build up in my system slowly, and then I’m generally OK. I find it difficult walking around with (younger!) people – For example, I went on a short flight with my nephew, who is a pilot, a couple of weeks back. To get to the plane was a long walk past all the hangars, out to where the plane was parked. Even with all the walking I have been doing, I found I just could not keep up with the youngsters!

My vegetable garden is doing very nicely – We have been eating carrots, radish and spring onions already, and the tomatoes and corn are coming on nicely. I am a bit late with planting beans and more carrots, but will catch up with that this weekend. When you work it out, it costs more to grow your own veges than to buy them in the supermarket, but there is something special about eating your own produce. And think of the good exercise!

Since starting on interferon I have developed a post-nasal drip, and find that I need to clear my throat often. It does not seem to be getting worse, but has not improved either. It has not been bad enough to see the doctor – Perhaps I will discuss with my GP in January when I go for my annual checkup. That should be interesting this year!

Week 32 – PET scan issues and pictures

2006-11-07T10:59:00.000+02:00

South Africa occupies the southern tip of the African continent. We pride ourselves on being more advanced than most of the rest of Africa. A few statistics culled from official publications: Two-thirds of the electricity consumed in Africa is generated in South Africa. 40% of the continent’s phones are here. 20% of the world’s gold is mined here. 84% of South African households have access to clean water. More than 70% of South Africans live in formal housing. 70% of households have electricity.

Although it is probably our most serious health issue, I won’t talk about HIV/AIDS in the South African context here. Perhaps another day…

When I was diagnosed with melanoma at the beginning of 2006, I was sent for a PET scan. At the time I didn’t know very much about it, but I quickly learned about the technology. But this did not prepare me for the actual experience, and I suddenly discovered how irrational feelings of claustrophobia could achieve a life of their own. I had to take a couple of additional tranquilizers to get through the process.

Another serious problem was the cost of the scan. This was about R12000 at the time (converts to about US $1600 at the official exchange rate). But the real challenge was that PET scans were not covered by my medical aid scheme. I could afford to pay this, but what about patients who are not so lucky?

A couple of months later, when I had come to grips with this melanoma creature, I did some more investigation into PET scans. A few clinics had recently invested in the equipment and trained staff. I tried to do a quick survey of medical schemes, to see how many of them would pay for scans. The results were patchy, but the main thrust was that this was new and expensive technology, and was not covered in current aid plans. One or two schemes were prepared to pay for scans if sufficient justification was provided by an oncologist.

Another unexpected problem appeared. Now, as you may be aware, a PET scan requires the injection of a radioactive substance into the blood stream. Generally this consists of a material with a very short half life, of the order of a couple of hours, and this means that it has to be prepared to order. The material is generally fluorodeoxyglucose (FDG). The production facility cannot be too far aware from the clinic, because of the travel times.

In South Africa, the Medicines Control Council (MCC) regulates the performance of clinical trials and registration of medicines and medical devices for use in specific diseases. Apparently when the PET scan was introduced in South Africa, the early approval for irradiated FDG was on a temporary basis, and only a few hundred doses were approved. When these were used up by the clinics the process had to stop. Equipment which cost millions of Rands was sitting idle until the MCC got its act together.

I tried to find the cause of the problem. Enquiries to the MCC lead nowhere – they were not prepared to talk to me. And oncologists I spoke to just shook their heads and made vague comments about incompetence at the MCC. I got the impression that this was only one small example of a much more general problem.

After a couple of months the material was approved, and the PET scan could continue to be used, although the question of payment by medical aid funds was not resolved.

In August I received a document from my medical aid fund, explaining their new funding policy for PET scans. It appears that there are still concerns about the high cost of the technology, and there is “limited evidence on the clinical outcomes”. I would have thought that a sufficient body of knowledge has been developed, but No! Here in South Africa we apparently don’t believe anything unless we have proved it ourselves. The NIH syndrome (Not Invented Here) is alive and well!

Anyway, they have decided to run a pilot project for the next year. So, subject to some restrictions, they will now pay for PET Scans. Essentially, they will only pay for PET scans for melanoma patients in Stage III and Stage IV, for staging and re-staging, and monitoring of treatment.

Interesting that when I last saw my oncologist, before this new policy was published, he was not too concerned, and simply scheduled me for a chest xray, and ultrasound scans. He seemed to think that was quite satisfactory at this stage, and the plan is to only do another PET scan when I have completed the year’s interferon treatment.

I received a CD with my original PET scan, and it contains the complete scan data and some software to view the data. I found the pictures it produced absolutely fascinating, but some people may not like to see everything that they reveal! Here are a few images which demonstrate what you get.

The little blip in line with the markers shows the parotid gland with melanoma.

A general vertical slice, showing everything present and correct. (Well, not quite: My gall bladder was removed some years back. On some images you can see a couple of staples which were left after surgery!)

Here is another slice showing the affected gland.

Darth Vader has nothing on this! These “rays” are caused by the large amount of metal in my teeth.

Week 30-31 – A little dentistry

2006-10-31T21:11:00.000+02:00

First, a little (very dark) humour:

Ok, on to a little more interferon experience...

I went into a clinic for a couple of hours to have a wisdom tooth removed. Although it had not developed into a serious abscess, it had been worrying me for a couple of weeks, and my dentist said it was time-bomb waiting to go off. I could have waited a while longer, but if it had developed further it would have been more serious. So we went ahead with the next available slot.

As I have described previously, one problem with interferon treatment is that some of the blood counts get depressed. The white blood cells are produced in the bone marrow and this process is interfered with. The effect is to reduce the body’s ability to respond to infections. Also, the platelet count drops, and this affects the ability of the blood to clot, and may make bruising more likely. The red blood cells are also affected – I think this is why one feels weak and light-headed / dizzy at times.

The bottom line of all the above is that surgery is best avoided while on interferon. There is an increased risk of bleeding, and one has to be careful that infections are not introduced.

It is interesting that each doctor has a different view – presumably informed by their specific experience. For example, I was told that it was possible to provide platelets in a transfusion. However, the dentist and his anaesthetist did not like the idea of introducing any blood products while my white cell count was depressed.
Also, I was told that surgery was inadvisable with a platelet count below 100. But these guys were quite happy with my count of 84.

So we went ahead, and I was in and out of the clinic before lunch.

Although I felt quite good after the surgery, the next week was not so good. I suppose it would have been OK if I did not have to continue with the interferon injections. And the antibiotics they gave me may have also contributed. I felt pretty lousy after each injection, and took longer than before to get back to ‘normal’ again each time. I took a whole day off and read two detective stories on Thursday last week!

Today I am almost back to normal, whatever that might be.

I also realized today that I have been neglecting my regular exercise. For the last couple of weeks I have been working hard on a consulting job, and it is so easy to carry on at my desk rather than get up and walk the dogs. I have to change this – My priority should be my health, and everything else should take second place.

Week 29 - Celebration and a minor challenge

2006-10-16T17:55:00.000+02:00

I see that my numbering for blogs got a little out of sync, so this post brings the numbering back into line. That's the danger of writing in the middle of the night, especially after an interferon injection...

First, the Really Good News: This morning I went off to the local clinic for chest xrays and ultrasound scans. As I have been feeling particularly good lately, and there have been no new side effects, etc, I have been quite positive and optimistic. But of course, there is always the possibility that some mets start growing.

Well, anyway, both the xrays and the scans came up completely negative! I had a good chat with the radiologist who did the scans, and he showed me everything he was looking at. He picked up a small cyst in my liver, but I know about that - It's been there for years and doesn't seem to have any significance.

So, Really Good News.... Jocelyn and I plan to celebrate with a small glass of champagne this evening, and possibly with a larger bottle tomorrow evening! Definitely a good excuse to celebrate.

As to why we are not doing a PET/CT scan again: That is another longer story, which I may write about next week. The simple answer is that PET/CT scans are still very expensive in South Africa, and the medical aid funds are still sorting out their policies.

And then another minor challenge has crept in to the picture. I started having a slight toothache about a week back. I hoped it would not be too serious, and I put off seeing my dentist - All health issues seem very important to me, and whatever I may say, I worry about them! I suspected that the root was infected, and that it would probably have to come out. As this tooth is a wisdom tooth, and it's opposite number was removed a long time back, it is not performing any useful function.

The problem is that surgery is not recommended while one is under interferon treatment, because of the depressed blood counts. Generally the anaesthetist will not want to go ahead if the platelet count is too low. My onc is out of the country, making the decision more difficult!

So, after chatting to my GP, we agreed to do another full blood count and then decide what to do. It is quite practical to do a platelet transfusion to boost the count temporarily. So I have put all of this in motion and we will see how it works out.

But the bottom line is that I have been doing quite well, and feeling quite good. I have been walking regularly with the dogs, and even made the gym a couple of times. So it seems this will not be a real challenge. The only problem is scheduling surgery to fit in with the interferon schedule, and the work time I will lose - I am working on a small consulting job which has a very tight deadline.

Until next time

For Kim-from-Iowa

2006-10-10T20:36:00.000+02:00

I started reading your blog a few weeks back, and have only just started to get to know you. When your latest update appeared on Holly’s blog a few days back I wanted to write to you. You are constantly in my mind, and I seem to think of you a few times each day. I don’t know if that qualifies as prayer, but I sure hope so.

I battled trying to decide to write to you. You don’t know me from a bar of soap, and I am only now learning about you. But having decided to write, here goes…

Kim, what can I say? You have been so positive over the last years. The position you are in now has not been for want of trying – You really worked hard at doing the right things, learning about this mel guy, and doing everything to keep him at bay.

I am pleased that you have so many friends and family to support you. I wish them strength to provide support all the way.

We know not where we are going, or when. We know only that we have to move on in the circle of life. My wish is that your future is filled with hope, as you have lived your life.

Alfred, Lord Tennyson wrote these words in The Passing of Arthur.
Right at the end, Arthur says:

“But now farewell. I am going a long way
With these thou seëst--if indeed I go--
(For all my mind is clouded with a doubt)
To the island-valley of Avilion;
Where falls not hail, or rain, or any snow,
Nor ever wind blows loudly; but it lies
Deep-meadow'd, happy, fair with orchard-lawns
And bowery hollows crown'd with summer sea,
Where I will heal me of my grievous wound."

So said he, and the barge with oar and sail
Moved from the brink, like some full-breasted swan
That, fluting a wild carol ere her death,
Ruffles her pure cold plume, and takes the flood
With swarthy webs. Long stood Sir Bedivere
Revolving many memories, till the hull
Look'd one black dot against the verge of dawn,
And on the mere the wailing died away.

I wish you all love and peace on your journey.

Peter

Postscript:
On October 9, 2006 Kim-from-Iowa passed on, in the company of Mary and Charlie. The number of postings on http://www.mpip.org/ has almost reached 100.

I never did speak to Kim. But I am richer for having known her story, and hope that I can be as positive and brave as she has been.

RIP

Week 26 - Half way there!

2006-10-06T21:16:00.000+02:00

I have not posted for the last couple of weeks for a couple of reasons. For one, I got a small consulting job with a very tight deadline, and I had to dedicate myself to the work. It's not yet finished, and for the next couple of weeks I will have to concentrate all my effort on this job. One thinks that one has all the time in the world, but working at home has some disadvantages... I need to do shopping, deal with the pool, look after my vege garden, walk the dogs.... Not to mention three days a week when I don't feel quite up to scratch due to the interferon!

Also, I took off five days to visit my parents. My Dad is 91, still fit and well, but getting older and slower. This trip involved my first 2 hour flight since starting interferon, so it was a bit of an experiment. How would the airline handle my medication kit? I am not prepared to put it in my checked luggage, as the stuff is damn expensive. So I called the airline and they said I should get a letter from my doctor. I got a letter from the oncologist, and then discovered at the airport that they were not even interested in it, and I sailed through the checkpoints without any hassle. So much for increased security!

And this Sunday we are holding a Spring Party for all our friends. We last did this about 20 years back, and it seemed a good time to do it again. Our garden now has a lot of shade, and the weather has warmed up. The pool is still rather cold, as it is shaded by a large tree, our very first Christmas tree! It was a mistake to plant it in the garden, and now that it is there I am not allowed to take it out! The party will be on Sunday morning, with champagne and orange juice, bacon, eggs, sausages, wheaties, yoghurt, fruit salad..... I'm really looking forward to this one.

And the interferon just goes on. Its getting rather boring, but I suppose that's exactly what one hopes for. Later this month I need to go for an xray and some scans, and see the oncologist again.

So, ciao until next week.

Week 24 - A thorny problem

2006-09-14T23:17:00.000+02:00

I have been thinking for a while about a rather difficult problem… It’s not a nice one, and has no quick solution. I touched briefly on this in my long posting in Week 20 … I hope I didn’t put too many people off with such difficult issues!

Here is the background: I have been working conscientiously to do the interferon thing as best I can, and also have been doing everything else I can find to make this whole process as successful as possible. And everything seems to be going well. Apart from the interferon treatment, and its effects, I am doing quite well, and even considering taking on some part-time work. I have been keeping very busy, with a whole lot of projects of my own.

I am almost at the halfway mark, and starting to look ahead to finishing the interferon year, and getting back to a normal life. It is now within reach, and I am even starting to make plans for what I will do next year. I have some trips around the country which had to be postponed and now I can start planning and booking.

So, what’s the problem?

Well, as you will know if you have been reading my blog, I have been doing a lot of research on melanoma. Over the last six months I have learned a lot about the disease. More than that, I have been tackling the mental side of it, and have been trying to sort out my feelings … What it is really about; Where I am in my life; Etc.

What I have been doing is consciously pushing myself to look at every aspect, even if this is painful and difficult. And I think the process is working. I have sorted out quite a few issues in my life … And even realized that some things which seemed to be big issues were in fact no longer problems.

One part of the picture which helps is to have a positive approach to everything. It’s not always easy to keep a positive approach. But I have always tried to look on the bright side … Bad experiences are mostly ‘learning experiences’, and one comes out at the other side stronger in many ways.

So, to repeat the question: What’s the problem?

Well, it is all very well having a positive attitude, and doing everything correctly. I am rather a cynic at times, and I don’t believe that one can solve this kind of problem simply by positive thinking. However much I would like to believe that I am going to be cured, I recognize that I need to be realistic, and accept that there is also a chance that it will not be successful, and that the melanoma will reappear. And then there will be all the nasty possibilities: Further surgery; further treatment; and even the worst possible outcome, death.

I am forcing myself to look at this problem head-on. Even three months back I don’t think I would have been able to do this. And even now, I don’t know how to move forward. But I am thinking about it, and discussing it with myself, with my wife, and a few of my good friends. The principle I am following is that, for me, there is no point in just ignoring the problem and hoping it will go away. I need to be positive, but also I must be realistic. I need to work out what it all means to me. I suppose I am trying to prepare myself for all the possible different outcomes, so that I will not be shocked again if it does not work out as positively as I would like.

Shalom

Week 23 - Waterberg retreat

2006-09-14T21:53:00.000+02:00

We spent last week at a small resort in the Waterberg, a lovely bushveld region near the Botswana border. Our cottage was very comfortable, with thatched roof and all luxuries. No cell phone reception...

Conita Walker "adopted" a baby rhino which was abandoned by its mother.

The Rhino is now about 4 years old. Visitors can hand feed it.

Interesting how many parasites can be seen in the bush, particularly during the winter when there are few natural leaves. These parasites are spread by birds and seemed to thrive on this particular type of tree.

Week 22 - Regular as clockwork

2006-08-30T21:21:00.000+02:00

I realized last week that I have been doing my interferon injections absolutely like clockwork – Very responsible and consistently. Every Monday, Wednesday and Friday I take a couple of tablets around 6pm, and do the injection about an hour later. I give this priority, and try not to allow other events to impact on the routine.

Having said that, I have shifted things around a bit: For example, sometimes I do a lecture on a Wednesday evening, and in that case I move the injections to Thursday and Saturday. But I always get back onto schedule by the next Monday evening. Sometimes I have to plan carefully ahead to allow me to do the things I want.

I know that many people are not nearly as consistent or reliable when taking medicine. A few examples: A fairly large proportion of people on antibiotics stop taking them or neglect to finish the course… This can be a serious problem, as the benefit of the course may not be achieved. Or even worse, it can give rise to the spread of resistant strains which are not clobbered properly at the start. In the case of HIV/Aids there are other problems: Some people do not feel they are getting any benefit. Without a positive goal they tend to neglect the medication, and so it becomes a vicious cycle – They don’t improve, so they don’t see the need to take the meds, and it becomes a self-fulfilling prophecy.

I suppose interferon is a good example: I am not actually ill from any visible disease at this time. Taking the medicine (injections) just makes me feel bad, and limits my ability to live a full life. It has no visible benefit, so it takes a lot of faith and positive thinking to continue with the regime.

In my case I am concentrating hard on all the things I need to do to make it a success, and keeping a positive attitude is no small part of the task. It takes a lot of conscious effort and positive thinking to continue week after week. I recognize that some people may have difficulty with this, and wonder how the differences between individuals affects the general statistics?

By the way: Next week we are going away to a timeshare resort in the bush. Five days in a warmer climate, some game viewing and walking, and time to just chill out and relax. I will post some pics when we get back.

Week 21 – The antioxidant myth

2006-08-26T17:40:00.000+02:00

A recent article in New Scientist throws significant doubt on the value of consuming antioxidants for various health reasons. (New Scientist, 5 August 2006).

We have all heard of antioxidants. A search on Google brings up over 10 million hits for the term. According to some estimates around half the adults in the US take antioxidant pills daily in the belief they promote good health and stave off disease.

“Our cells produce thousands of free radicals every day. Free radicals from the environment occur as an effect of stress, pollution and unhealthy eating habits. … Fortunately, we can protect our bodies with the super power of antioxidants.”

“Recent tests have shown that … is the most powerful antioxidant in the world, in fact, it is 902 times more powerful than vitamin E and 216 times more powerful than vitamin C.”

“… is ten times stronger than beta carotene and up to 500 times stronger than vitamin E as an antioxidant. Other unique aspects of its structure allow it to pass the "blood brain barrier", meaning it can deliver antioxidant benefits directly to the brain and central nervous system.”

However, evidence gathered over the past few years shows that at best, antioxidant supplements do little or nothing to benefit our health. At worst, they may even have the opposite effect, promoting the very problems they are supposed to stamp out.

Stephen Barrett has written (http://www.quackwatch.org/) “It is known that people who eat adequate amounts of fruits and vegetables high in antioxidants have a lower incidence of cardiovascular disease, certain cancers, and cataracts. Fruits and vegetables are rich in antioxidants, but it is not known which dietary factors are responsible for the beneficial effects. … Only well-designed long-term research can determine whether any of these chemicals, taken in a pill, would be useful for preventing any disease.”

An article on Wikipedia (http://en.wikipedia.org/wiki/Antioxidant) describes the field in some detail. What comes across is that this is an extremely complex area. The concept of oxidation is intimately tied to life as we know it. As New Scientist says, “Free radicals are an unavoidable hazard of being alive. We live in an oxygen-rich atmosphere, and radicals… are natural by-products of respiration.”

The myth dates back to the 1980s. Scientists had known for a long time that people whose diets are rich in fruits and vegetables have a lower incidence of heart disease, diabetes, dementia, stroke and certain types of cancer. The hypothesis developed that antioxidants are free-radical sponges which can stave off the diseases of old age. An additional leap was then made, that taking them as supplements or in fortified foods would decrease oxidative damage and diminish disease. It seemed an obvious conclusion...

However, over the last 20 years scientists have been putting these compounds through their paces. True, antioxidants knock the wind out of free radicals in a test tube. But once inside the human body, they appear to be bad at preventing oxidative damage, and they can even make things worse. There are some serious horror stories surrounding beta carotene supplements: In May 2006 an expert panel convened by the NIH concluded that there was no evidence to recommend beta carotene supplements for the general population, and strong evidence to recommend that smokers avoid it. Similar results exist for vitamin E, the world’s most popular antioxidant, as well as vitamin C.

Now, no-one is saying that there are not advantages to following a healthy diet. If you improve your diet, and eat many fruits and vegetables, you are bound to benefit. But it is wishful thinking if you think you can simply pop a few pill supplements each day to avoid the consequences of eating badly. And, as with iron supplements, there is the serious possibility that you can damage your health by excessive pill popping. Which brings me to an important point made, again, I think, by Stephen Barrett: For most of us, you can obtain much more significant health benefits simply by improving your diet and lifestyle: Exercise more, smoke less, eat more fruits, nuts and vegetables, and keep your weight under control.

To which I would add: Drive carefully, and don’t go out into the sun without a hat and your sunscreen!

Week 20 – The play’s the thing, Wherein I'll catch the conscience of the king

2006-08-20T13:34:00.000+02:00

“All the world's a stage,
And all the men and women merely players:
They have their exits and their entrances;
And one man in his time plays many parts,..”
- William Shakespeare, As You Like It, 2. 7. 139-167.

Death is one of the most popular characters in Terry Pratchett’s Discworld series. He always speaks in Small Caps. This may have something to do with, being a skeleton, he has no vocal chords.

"Of every tree ... thou mayest freely eat; but of the tree of the knowledge of good and evil, thou shalt not eat of it: for in the day that thou eatest thereof thou shalt surely die"
-Genesis 2 v 16-17.

Introduction: The man sits in a simple chair in the centre of the stage. His arms rest on the wooden arms of the chair; He does not move any part of his body while speaking.

Man: Well, my friends, things have come to a pretty pass. All my life I have been so busy doing things and acquiring goods. And I have had some successes, and also some failures. I have worked hard and played hard.

I have studied and learned about this wondrous universe we inhabit. I do not claim to understand it all, but have developed a reasonable understanding of what makes it tick, and how to make it work for me.

I have loved and been loved. I have enjoyed beauty, from the glory of the very smallest elementary particles, to the largest galaxies and the Sloan Great Wall. And the greatest beauty of all is the wonder of life in all its variety, depth and complexity.

I have laughed at humour and cried at sadness.

And I never gave much thought to the future. Oh yes, I know that life is not infinite; That one day I will die. But not really: That future seems to belong to someone else, another persona, divorced from my daily living. Even the loss of friends who passed on did not bring it home to me.

[Death appears at the left of the stage. He is dressed from top to toe in black. As is traditional, he carries a large scythe.]

Death: Well met, my friend. You have led me on a sorry dance, but here we are at last…

Man: What do you want with me, old man? What business do we have together?

Death: All men and women eventually have business with me. Surely you have heard of me? Does my reputation not precede me?

Man: I’m sure I do not know you. Have we met before? Why do you wear that dark cloak, and why is your face hidden?

Death: We have met many times before. But you do not remember…? I think the first time we met was when your grandfather Duncan died, but you were very young, and probably don’t recall anything. We met when Bob Powell died. And we met when your grandmother Bep died… And the next time was when your mother died? Are those enough to jog your memory?

Death: Allow me to introduce myself: I am Death.

Man: [Aside in stage whisper]: I don’t know whether to be impressed or to laugh out loud. Should I be honoured, that Death himself has come along to collect my soul? Wizards and other significant figures have the privilege of being collected by Death himself, but I would have expected to be met by a lesser functionary. Even Shakespeare said:

“When beggars die, there are no comets seen;
The heavens themselves blaze forth the death of princes.”
- Julius Caesar, Act II, Sc. II

Death: Let’s get back to business… You have been on my to-do list for some years now, but somehow you keep avoiding me, and I’m starting to lose patience with you.

[Aside] Sometimes I wonder why I took on this job. And it gets harder with each passing year. It used to be fairly straightforward. A small war here or there; some pestilence or famine; or a natural disaster; and I could collect souls by the thousand. But Man has learned to interfere with my work.

Man: I have not needed your company in the past, and I see no reason to need you in the future…

[Thinks] : Let me think about this for a while… There seem to be a few attitudes I could adopt:

- Ignore Death – Maybe he will go away?

- Death is not really what it seems to be – But what is it?

- Face the reality, and seek a way to escape. But where can I escape to?

Death: Let me show you your record in my database. Yes, I move with the times! The continual upgrading of technology costs me a pretty packet, I can tell you, but it is Worth it, to have all the facts at my finger tips. [Just a turn of phrase, as I don’t Have any fingers!]

Here we are: I can see we have had some close calls, but you always slipped from my Grasp. When you were young and started playing with electricity I thought I had you a few times. And when you got your driving licence I was filled with hope, but it was not to be. And when you tried your hand at rock climbing I had a few chances, but you were far too wary…

Man: It looks like I was careful, or just lucky. So there we are: I still have no need of you.

Death: Don’t be too quick to dismiss me. Over the last century I have been developing some backup plans. Call them insurance policies. In your case I got you out into the sunlight from an early age, and as a teenager I got you to spend many hours on your bicycle, out in the fresh air and sun. Sounds attractive, but the UV light is invisible, and its effects build up over time.

Another plan I had was to develop a high sense of responsibility, and hope that you Would become a workaholic – The idea being that you would eat badly, suffer from Stress, and neglect your health. And I would get you at last, in one way or another.

Man: So there it is at last: I have been looking for a scapegoat. You are the one I can blame for this melanoma. But we have caught it, and for the moment I am free of it. I am taking interferon treatment for a year, and I have made great strides in improving my general
health, and I’ll beat it yet!

Death: Don’t be too sure of that. I still have much power over this process. The melanoma insurance policy was a good one, and man and his technology can only go so far. I will meet many of you before five years are up.

Man: [Aside] This Death is sneaky. But I wonder if he is just trying to annoy me, or make me worry? I have been able to maintain a positive attitude, and I’m sure this has helped me in everything else I am doing to fight him. But if I let doubts enter my mind, my resolve may waiver.. But on the other hand, I know that the statistics show he is correct.

[Aloud] I have faith that I will beat you yet. All I need to do is carry on with the interferon treatment for a year, and then I should be free of it. I don’t mind putting my life on hold for a year… I can start making plans for what I will do next year. I have always been able to work on long-term plans, and this is no different… I just need to put up with the lousy side effects, and in no time it will be over, and I can carry on with my life.

Death: [Aside] Aha, he thinks he has it all worked out. But he is quite right: I am a sneaky bastard, all right, and I will not give all my secrets away.

[Aloud] Well, it looks like you are correct. Your surgeons have done a good job, and you appear to be free of further spread… so far. I have to give you credit for working so hard on your health as well. Your blood pressure is under control; No sign of Diabetes or heart disease. And losing that excess weight has reduced the risk of other diseases…

Man: [Aside] Aha! I’ve got him now – He agrees with me, so I must be doing something right. Let’s see if we can get rid of him.

[Aloud] Well sir, I think you have to agree with me – We have no business together today…?

Death: Much as I hate to admit it, you appear to be correct… for the present. I wish You a good day. I have much other urgent business, in Africa and the Middle East, so let me waste no more time on you.

Good day.

[Aside] It is as I thought: This man is putting up a good fight and appears to be Winning, for now. But there is one important point he has missed: Sooner or later, they all succumb to my scythe. There is no way out. The only questions are: When, and How?

[Exits]

Man: At last, I was worried that I would not be able to get rid of him. What a loser… Now I can carry on with my original plan. I will continue with the interferon treatment. It’s a nuisance, and has limited my movement, but will be worth the effort. Once this year is over I can get back to normal, put my life back into order, and start doing all the things I want to do. Must get out that list and add a few more things which have come to mind…

[Starts writing in a little red book.]

[Death appears again at the edge of the stage. The Man cannot see or hear him, but we, the audience, can see and hear him clearly.]

Death: Most men have a very simple view of my role: They live their simple lives, and When I finally take them way, they call it death. But I am more devious than that… That simple death is only the final stage – the last nail in the coffin, to repeat one of my favourite phrases!

Here is the secret: Life is to be lived, embraced, enjoyed, from start to finish. But very few men are able to do this, and that is where I start to profit, long before the end. When men stop living, or put their lives on hold, there am I, starting to take over, and from there it is steadily downhill, and I take them finally.

Some men live in the past, recounting past joys and triumphs, or bemoaning past accidents and wrong decisions. What a waste, reliving the past: But it limits their ability to see what could be, and I am there, standing just behind them, steadily taking away what little life they have left.

Others live in the future, slaving away now, in depressing cubicles, saving their money and time for some point in the future when they will be able to start really living. These are also some of my star performers. They are so busy saving for the future that they do not see me standing close. And I pick them off, one by one: Heart attacks; cancer; traffic accidents; Alzheimer’s – These are my tools in trade. Too late, too late, each one finds his life suddenly cut short, and all those plans go down the drain.

But the present is the only reality: Happiest is the man who is truly living in the Present. These are the men who give me the greatest difficulty, and I cannot do much about them, until our final meeting.

Week 19 – Do as I say, not as I do!

2006-08-11T20:46:00.000+02:00

This has not been a good week. Last weekend I went shopping, and went out for lunch. Probably was not careful enough with my eating. I am making very slow progress on my project to repair my antenna, and it has been bugging me. So on Sunday I did a lot of sanding, and then painting… A couple of hours work. By the evening I didn’t feel so good, and hit the hay very early.

Monday I felt a bit down, but attended a business meeting, and then had lunch with a friend in Pretoria. It really hit home on Tuesday: Muscular aches and pains which didn’t go away. Wednesday was a holiday, and I got up late. Thursday I just didn’t feel good, so I took it easy, reading. Today was the first day I felt back to “normal”, whatever that might be, and I managed to get to the gym.

When will I learn? I know that I need to be careful about not doing too much. It seems OK at the time, but it catches up with me about 2-3 days later, and then takes a day or two to recover.

I had a set of bloods taken about three weeks back. The oncologist did not call me, so I suppose that was good news. But I was digging through my files, and found some previous path. reports, so I thought it may be interesting to compare ‘before’ and ‘during’ pictures. The figures show that all of my bloods have been well within the correct ranges for some years. However, now that I am on interferon there are some noticeable effects: Haemoglobin, Red cell count, White cell count, Neutrophils and Platelet counts have all dropped. Here are a couple of graphs to show the figures.

The Haemoglobin figure should be between 14 and 18, so mine is now a little on the low side.
White cell count should be between 4 and 10. Definitely lower than it should be...

I called the oncologist and discussed the latest figures. I wanted to know whether the drops were serious, and what I should do about it. Generally they are not worried, but agreed that I should improve the iron in my diet. Also, in view of the lowered white cell count, they suggest I should avoid concentrations of people, in order to avoid picking up infections and viruses!

I wonder why they didn’t talk to me until I asked?

Come to Sunny South Africa!

2006-08-04T09:25:00.000+02:00

Springtime in South Africa

We don't usually have any snow to speak of!

I know those of you in the northern hemisphere are mostly sweating in the hot weather!

Perhaps George Bush is starting to get the message about global warming?

Week 18 - Just had to share this...

2006-08-03T13:28:00.000+02:00

Very short post this week… I just had to share this with everyone / show off!

As mentioned a while back, I have been working on my diet. I have had a few sessions with a dietician, and have been working hard at improving my diet. I figured that this was one way in which I can give the Interferon the best chance of doing its work. Being healthy cannot help but improve my situation.

I started with my eating plan around the first week of June. My objective was to reduce weight, and get rid of this spare tire around my middle. I have been tracking my weight on a daily basis, and as you can see from the graph, my weight is steadily going down.

One of the results is that my waist size has gone down by about 5 cm so far, and I can see the impact in my clothes. I have moved down a few notches on my belts, and I can see that I will have to alter some clothes when I reach my new target weight. I had some jeans in my cupboard which have been too tight for the last few years, and now they fit me comfortably!

I also notice that the side effects of the Interferon seem to have reduced. I’m not sure if this is because of the weight loss, and improved health, or just that my body is getting more used to the IF. I am sleeping better, and don’t feel nearly so foggy the day after each injection.

I am trying to keep up with regular exercise as well. This means getting to the gym 2-3 times week, and walking my dogs every afternoon. Still feel light-headed whenever I stand up quickly, but as soon as my heart rate picks up that goes away.

Lastly, my digestion has improved. I eat lots of vegetables and fruit, and eat fish or legumes for lunch every day. I suppose it is fortunate that I enjoy all these fruits, salads, etc.

Week 17 - Mad Dogs and Englishmen

2006-07-28T18:21:00.000+02:00

Peanut butter is good for you!

In tropical climes there are certain times of day
When all the citizens retire,
to tear their clothes off and perspire.
It's one of those rules that the biggest fools obey,
Because the sun is much too sultry
and one must avoid its ultry-violet ray --
Papalaka-papalaka-papalaka-boo.
Digariga-digariga-digariga-doo.
The natives grieve when the white men leave their huts,
Because they're obviously, absolutely nuts

-Mad Dogs and Englishmen, Noel Coward (1932)

Here in the southern hemisphere we are passing through Winter. The weather is starting to warm up and signs of Spring are all around. This is the time of the year I start itching to get away in my 4x4. This is the best time of the year to visit those places which become unbearably hot later in the season. One problem with being in the great outdoors is increased exposure to the sun. Previously I did not worry much about it, but things have now changed… So, I have been looking at all the ways in which I can reduce my exposure to the sun.

Some facts on ultraviolet light

There is a wealth of information on ultraviolet radiation on the internet. Wikipedia is a good place to start if you would like more detail.

Ultraviolet radiation is radiation with a shorter wavelength than ordinary light. The ultraviolet spectrum covers a range of wavelengths, and is subdivided into UVA (longest wavelength), UVB (medium wavelength) and UVC (shorter wavelengths). Although the sun emits radiation over a very wide range, we are protected by the atmosphere, which absorbs the shorter wavelengths, so 99% of the UV radiation which reaches the earth’s surface is in the UVA range. This is fortunate as the shorter wavelengths have higher energy, and can have substantial effect on living organisms (Us!)

UVA is the least harmful, but can contribute to the aging of skin, DNA damage and possibly skin cancer. It penetrates deeply and does not cause sunburn. UVB light causes erythema – reddening of the skin (sunburn), and can cause skin cancer. This cancer connection is one reason for concern about ozone depletion and the ozone hole.

The body tans when exposed to moderate levels of radiation by releasing the brown pigment melanin. This helps to block UV penetration and prevent damage to the vulnerable skin tissues deeper down. Suntan lotion that partly blocks UV is widely available. The SPF rating describes the amount of protection given. This protection, however, applies only to UVB rays responsible for sunburn and not to UVA rays that penetrate more deeply into the skin.

Some sunscreen lotions include compounds such as titanium dioxide which helps protect against UVA rays. Other UVA blocking compounds found in sunscreen include zinc oxide and avobenzone.

Measuring ultraviolet radiation

The sun emits radiation, and particles, over a very wide range. Various satellites are in place to monitor the behaviour of the sun. The most dangerous of this radiation consists of X-rays, but these do not reach the surface of the earth, being absorbed by the ozone layer. The amount of UV radiation reaching the ground varies widely, and depends on the angle of the sun, the thickness of the ozone layer, and the amount of water vapour and other particles (dust) in the atmosphere.

The UV Index is a measure of how strong the UV radiation from the sun is at a particular place. The scale ranges from 0 (night-time) to 15 or 16. There is no qualitative difference between low and high UV levels: The only difference will be the rate at which your skin burns! It is recommended that people protect themselves when the UV index is 3 or higher.

Various services provide a prediction of the UV Index. In the US, the US Environmental Protection Agency provides useful information through the SunWise program. Closer to home, the South African Weather Service monitors the UV Index at various points around the country. The graph shows the measured UV Index for Pretoria, fairly close to where I live.

Wearing a hat

I had a nice hat with a broad brim, but somehow it got lost. So last week I bought a new one, and now keep it near my car keys, and take it with me whenever I might find myself out in the Sun.

Solar film for the SUV

I spend quite a lot of time in my car, and obviously when we are out touring we spend the whole day in the car. I was told that a good quality solar film will remove 97% or so of the ultraviolet light. The cost is very reasonable, so I had film installed on all the windows in my SUV, except the front windscreen, which I will think about for a while: The film introduces a certain amount of distortion, and this may not be clever on the windscreen.

There are a few manufacturers of solar film, and they all say that their products will remove 97% or better of the ultraviolet light. However, there are some cheaper or “budget” films which may not be up to this standard.

The following information was found on the web:

Bekaert : http://www.solargard.com/index.cfm Tables show these films block 98% of UV light. “Window films block nearly 100% of ultraviolet light from passing through glass. The Panorama window films are approved products of the Skin Cancer Foundation.”

Toray Plastics: http://www.torayfilms.com/ Excell XT371 film: UV Protective degree (310-380 nm) – 99.2%.

So, what does this mean? Well, if the film blocks, for example, 98%, of the UV, this is equivalent to a reduction factor of 50. If the UV Index is 10, it would be effectively reduced to 10/50, ie: below 1. This is a substantial reduction!

Suntan lotions, sunscreen and sunblock

The objective is to protect your skin from the sun’s UV radiation. But just to confuse us, remember that there are suntan lotions which do the opposite, in order to tan more quickly!

There are many different formulations for sunscreens. The SPF (Sun Protection Factor) is a measure of the effectiveness of sunscreen, and works as a multiplier. For example, if you would normally develop sunburn after 30 minutes, then a sunscreen with an SPF of 10 would extend this time to 300 minutes, or 5 hours. You would still tan, but could stay much longer in the sun.

However, there are some other factors which may affect the effectiveness. For example, you need to make sure that sufficient sunscreen is used, and also that the sunscreen is properly applied to all exposed parts of the body. Also, it is important to ensure that the sunscreen is not removed, for example, by rubbing, or swimming, etc.

Now that I have done all this investigation, I collected together the various sunscreens we have around the house. These are:

Nivea Sun: SPF 20 – UVA+UVB protection plus vitamin E; main ingredient Ethylhexyl Methoxycinnamate
Elizabeth Anne’s Sun smart baby: SPF 40 – UVA+UVB protection with vitamin E and Aloe Vera; main ingredient Ethylhexyl Methoxycinnamate. Also contains Titanium Dioxide (UVA)
Dis-Chem SPF 30+ sunscreen: UVA + UVB protection; main ingredients Octyl Methoxycinnamate, Benzophenone 3 and Titanium Dioxide (UVA).

Here are some useful links if you are interested in further information:

US Environmental Protection Agency – SunWise program: http://www.epa.gov/sunwise/

Wikipedia: http://en.wikipedia.org/wiki/Ultraviolet and http://en.wikipedia.org/wiki/UV_index

US National Weather Service – Climate Prediction Center: Current UV Index forecast: http://www.cpc.ncep.noaa.gov/products/stratosphere/uv_index/uv_current.shtml

Today’s Space Weather, Space Environment Centre: http://sec.noaa.gov/today.html

SA Weather Service UVB Graphs: http://www.weathersa.co.za/UV/UV.jsp

Paranoia and accidents

2006-07-20T18:09:00.000+02:00

Looking back at all my posts, it looks like I'm doing well, and very positive. But you cannot believe how worried I have been over the last two weeks. It started when I found I was scratching a small mark on my forehead, and it didn't want to heal. And then I suddenly found a large mark on my stomach. It looked like a large clear mole, but with a dark colour on one side.

Oops! During the daytime I was not so worried, but at night, after interferon, I have been really bugged. And it didn't help that I had to wait a couple of weeks to see my dermatologist.

Anyway, to cut a long story short, I saw him today. He had good look and declared the one spot no problem at all, and the spot on my stomach a sebacious wart (seborrhoeic wart). From the British Association of Dermatologists web site:

Seborrhoeic warts are also known as seborrhoeic keratoses and as basal cell papillomas. The term ‘senile wart’ has now been dropped as it offended many patients. Seborrhoeic warts are harmless growths on the skin, which are very common in the elderly. They are often pigmented.

Despite their name, seborrhoeic warts are nothing to do with sebaceous glands or viral warts. They are benign growths due to a build up of ordinary skin cells. They are strongly age-related. They usually start to appear after the age of 40 years, and most old people will have at least a few seborrhoeic warts: some will have large numbers. They are not infectious and do not become malignant.

So there it is. He treated both with liquid nitrogen, so that should be that. I love the infiltration of political correctness!

But I feel like an absolute idiot today. This morning I was walking in the garden, looking over the vegetable garden. It's the end of winter now, and we are starting to think about what seeds to put in as soon as the ground warms up. I was not careful enough, and stood on a pile of leaves.... And my foot slipped sideways, and I twisted my ankle quite badly. It was so painful I shouted, and had to sit down on the ground for a couple of minutes until the pain reduced.

After about an hour I had a large swelling, and decided I may as well see my GP. She took one look and sent me off for an x-ray. We couldn't see any broken bones so that's good for a start. But what a nuisance: I have been so proud of my regular exercise every day, walking my dogs, and now I will have to keep my foot elevated, and walking to a minimum. I will have to see what I can do at the gym so that I at least get some exercise every day.

Accidents will happen!

Week 16 – Too late to say farewell

2006-07-17T17:46:00.000+02:00

(Note: Names and places have been changed to protect the innocent!)

Jim was one of those people who was larger than life. Originally from Rhodesia, he was tall, tanned and well-spoken, and he was also a heavy smoker. Nothing unusual about that in the early days – Just about everybody smoked, and cigarettes were extremely cheap.

Jim became ill and stopped working. I’m not sure what the cause was, but I gradually became aware that it was serious. I thought of going to visit him, but somehow didn’t get around to it. And then suddenly he died.

The news shocked me, and made me think about how I had behaved. I was very young, and Jim’s death did not make me think about my own mortality, but it suddenly seemed so final – I had not even sent him a card; I had not phoned to keep in touch; and now he was dead and gone, and I would never be able to tell him how much I valued his friendship.

It taught me a valuable lesson. I resolved not to let this happen again. If someone I knew was ill, in hospital, or at risk, I would make every effort to visit, before it was too late.

And then, a couple of years later, Monty, another one of my work colleagues became ill. He was older than me, and we had shared an overseas study trip of six weeks, so we had got to know each other fairly well. And very suddenly he also passed away. And I had not made contact with him – I can’t remember the reasons why.

After a memorial service was held at our workplace, I had a telephone call from his wife. We had never met, but she was calling to thank me for being his friend over the years. I was embarrassed, and didn’t know what to say. She must have thought me an imbecile or worse, or hopefully she realized that I was confused. Here was a woman who had just lost her husband of many years, and she was calling me. I should have been able to say something to console her; Mention something, anything, to make her loss more bearable, but I was tongue-tied.

So, had I really learned the lesson? I resolved once again that I would make every effort to make contact with anyone who is old, or in ill-health, or in hospital.

More recently, I put this lesson to use more successfully. My uncle Rob (real name) lived fairly close by, and he contacted me a few times, just to keep in touch, or for help with his computer. He was getting old, and had trouble with his vision and his hearing. Eventually he landed up in hospital with various problems. I made an effort to visit him often in the hospital, and we had many nice chats. I learned a lot about our family history, and got a new view of his life. Rob got past these problems and returned home.

At Christmas he was taken ill during dinner, and landed back in hospital. After some major surgery he was in the intensive care section, and I visited him as often as I could. A couple of times when I visited, I found him asleep. Instead of waking him, I just sat with him for a while, and then left him to continue sleeping. He was certainly not alone, with visits by all members of his family, but I think he appreciated seeing me, and chatting about this and that. We didn’t solve any of the world’s problems, but that was not the objective!

After a couple of weeks he returned home. And suddenly one day I got a call to say that he had passed on. What can one say: I was extremely sad, but at the same time glad that his suffering was over. And I had no regrets about not visiting him. We had spent many hours together, and I got to know a side of him which I would otherwise never have found. And I’m sure that I brought some interest and joy into his life.

Lastly I must relate a story about my friends Mike & Mary. Mike and I worked together in our very first jobs, and we were good friends. Mike & Mary bought a house not far from us, and settled down to build their lives and their family. In the earlier years we had some contact, but this became more and more sporadic, even though we lived fairly nearby. One gets so involved in work and family.

A few years back I heard that Mike had not been well. He had been in hospital for removal of a spot in his lungs, and was recovering. At this time I did not realize how serious this was. The message I got was that the cancer had been cut out, and he would be back to normal soon.

That year was not a good year for me, with some serious work challenges. The result was that I did not make contact with Mike, although he was on my mind. At one stage I tried to contact him, and was told that he was still recovering, and it would be better to wait until he was a little stronger. I should have made the time.

A few months later I heard that Mike was now really ill, and I went to visit him. By this time he was at home, being looked after very competently by a hospice nurse. He was not in good shape: The first time I visited, I’m not sure if he even knew who I was. He passed away shortly afterwards.

There are a couple of themes to this blog:

1. Do it now! Keep in contact with all your valued friends and family. You never know how long any of them will still be around. I regret not maintaining contact over the years, and particularly when Mike was ill. And now it is too late.

2. Enjoy your life – Now! There is little purpose in putting off that trip to a South Sea island, or taking up bungee-jumping, or really starting on that water colour project. You may not be around to enjoy it.

3. Look after yourself. Make sure that you don’t expose yourself to known hazards, such as smoking.

Week 15 – BOINC! and the search for Little Green Men

2006-07-11T20:56:00.000+02:00

Today there are literally millions of computers sitting quietly on desks or in dark corners, doing pretty well nothing most of the time. Probably the first project to attempt to harness all this computer power was the SETI project – The Search For Extra-terrestrial Intelligence. The idea is to allow each home computer to connect to a central server, and download a small portion of the task, and then plod away until that portion is complete, and then return it to the server.

BOINC stands for the Berkeley Open Infrastructure for Network Computing, which provides all the facilities to download tasks, and collect the results. “The intent of BOINC is to make it possible for researchers in areas as diverse as molecular biology, climatology, and astrophysics to tap into the enormous but under-utilized calculating power of personal computers world-wide.” At July 2006, BOINC has approximately 735 000 users, with over 900 000 computers, spread over 249 countries. There are currently 28 separate projects.

Why am I discussing this on a blog focused on the melanoma experience? Well, one of the projects you can support via BOINC is Rosetta@home, which is attempting to solve one of the longest standing problems in molecular biology: the "protein folding" problem. Proteins are the miniature machines that carry out almost all the important functions in your body. As with any machine, understanding how proteins work requires understanding what their structures are. However, until very recently, it has seemed nearly impossible to compute the structures of proteins from their amino acid sequences, and solving this problem has been something of a scientific "Holy Grail". The major stumbling block is the very large amount of computing time required to solve the problem.

The Rosetta@home project is contributing to research into Malaria, Anthrax, HIV, other viruses, Alzheimer’s disease, and Cancer, and it was this last one that made me finally get my act together, and download the software. I would rather contribute to basic research in this area than, eg; the SETI project, as it has a more direct bearing on our current problems.

I found it quite simple to download the software and get it working on my two pcs. One pc is a rather old desktop, but it is available 24 hours a day. My notebook is more recent and much faster. Once started, BOINC automatically downloads work tasks, and grinds away whenever the machine is not busy. As soon as I press any key on the keyboard, it suspends the task and the machine is available for work as usual.

However, there is a catch, and this relates to our backward communications systems here in South Africa. At home I have a broadband connection, which I need for my consulting work. The speed of the connection is not an issue, but unfortunately bandwidth is limited in South Africa. For cost reasons I opted for the lowest bandwidth cap, which is 1 GB per month. This is quite sufficient for my normal purposes, but once I started using BOINC I quickly reached my limit, and had to switch it off about half way through the month.

So, what is the bottom line on this? Well, I can still contribute to some extent, but there is no way I can just leave BOINC running all the time … Well, not until the cost of bandwidth drops in South Africa!

So, another good idea bites the dust. Pity!

Some useful references if you want to explore further:

Rosetta@home: http://boinc.bakerlab.org/rosetta/
BOINC: http://boinc.berkeley.edu/
SETI@home: http://setiathome.berkeley.edu/
There are also good articles on BOINC, SETI@home and Rosetta@home on wikipedia.

Week 14 - Pictures

2006-07-10T21:07:00.000+02:00

Week 14 - Vitamin D, cancer and sunshine

2006-07-06T20:41:00.000+02:00

One of our local newspapers has picked up on a debate concerning the supposed “magic bullet” of Vitamin D. Oliver Gillie, who runs the non-profit organization Health Research Forum, has been expounding his theory that we have got it all wrong: Sunlight is good for you, and in fact exposure to sunlight is correlated with a reduction in various cancers, and also protects us from upwards of 25 different diseases!

Oliver Gillie is a freelance medical researcher and writer. Formerly he was medical correspondent of The Sunday Times, then medical editor and later special correspondent of The Independent newspaper. He has a BSc and PhD degrees from Edinburgh University where he studied genetics and developmental biology. Gillie says:

Human beings need regular exposure to sunlight on their skin so that they can make vitamin D which is vital for health. Yet the British government advises the public to “cover up, keep in the shade”. This advice is mistakenly modelled on a programme developed in Australia where a tropical to Mediterranean type of climate provides much more vitamin D. Faulty calculations made by the National Radiological Protection Laboratory have misled UK government advisers into thinking that casual exposure of hands and face to the sun in the UK will provide sufficient vitamin D for health.
In fact casual exposure does not provide enough vitamin D in the British Isles and the majority of people in the UK have an insufficient level of vitamin in the blood, particularly in winter.The risk of skin cancer from sun exposure is much smaller than the public has been led to believe while the risks of vitamin D deficiency or insufficiency, which are seldom mentioned, are now known to be very substantial. Insufficient vitamin D at crucial times of life or for prolonged periods appears to increase the risk of several cancers, including breast and bowel cancer, diabetes, high blood pressure, schizophrenia, multiple sclerosis and many other chronic diseases including even tooth decay.
The UK government campaign for prevention of skin cancer, led by Cancer Research UK, has in effect been a campaign against sunbathing. Perhaps its most misleading aspect has been the slogan: “There is no such thing as a healthy tan”. This ignores evidence that people who have a deep tan are less likely to get melanoma, the most serious form of skin cancer. While people who get sunburnt, an indication of extensive exposure to the sun, are less likely to get multiple sclerosis or prostate cancer. Oliver Gillie’s report, Sunlight Robbery, explains how government policy has gone badly wrong and urges people to sunbathe whenever they can, wearing as few clothes as possible, while taking care not to bake or burn.

I have read the documents on his website, and frankly I am not convinced. It is a fact that people living in Europe do not see the sun very much, and it may be that this leads to low vitamin D levels. However, there are quite a few problems with Gillie’s suggestions.

I am always worried by someone who has the answer to everything, more so when he insists that he and a small group are the only people who see the truth, and that the rest of mainstream scientists are consciously ignoring what, to Gillie, are self-evident facts. The document Sunlight Robbery: Health benefits of sunlight are denied by current public health policy in the UK is filled with comments such as “Evidence that these diseases are caused, at least in part, by a deficiency of sunlight and vitamin D has accumulated at an accelerating pace over the last 10 years but is not well known, even to professional scientists,” “Present government policy on sunlight is the product of limited specialist knowledge, particularly of dermatologists.”, and “Sunlight may have other benefits, not at present fully understood.”

Gillie and others make the point that a certain level of exposure to the sun, producing a tan, seems to protect against melanoma and other skin cancers. However, Kaskel et al have this to say (2001) “Sunburn in childhood and increased sun exposure during annual holidays in sunny areas should be avoided. In contrast, outdoor activities in childhood, including soccer and gardening, should be encouraged because they are associated with a lower risk of melanoma formation.”

When I was young (a long time ago…), we did not have television, computers, video games, etc. I grew up in Johannesburg, South Africa, at approximate latitude 26° S. I lived quite far from school, and had to ride a bike to and from school every day .. And most of my friends lived near the school, so I was always out and about on my bike. In summer we spent many happy hours in the sun at swimming pools, and I recall getting seriously burnt on many occasions.

Fast forward a few years, and I graduated to a motor car. One spends quite a lot of time in the car, although this is usually in the early morning and late afternoon traffic, when the sun is less intense, but also at a lower angle. We drive on the left, so I had more exposure on the right hand side of my face … And this is precisely where I have had many skin problems, with two melanomas over the last few years.

The problem I see with Gillie’s recommendations, even if his conclusions are correct, is: How is anyone going to translate this into action, without increasing the incidence of melanoma? Skin types vary widely, so what is acceptable for you may be dangerous for me. The amount of exposure to the sun depends on the latitude, altitude above sea level, angle of the sun, pollutants in the atmosphere, and so on, making it almost impossible to provide people with a rule of thumb.

I see a very real danger that each person will interpret his/her situation subjectively, and run the risk of getting it wrong! As a simple example, when I was young, we would spend hours at the public swimming pool, trying to attract the attention of girls… (We hardly ever succeeded…) But the result was that we got awfully burnt! Although we knew better, this did not stop us – We just ignored the consequences, as kids usually do. And in those days there was no sunscreen, and no awareness of melanoma.

No Mr Gillie, I think you have not thought this through properly. It is dangerous to make recommendations without taking into account human nature. For example, what about the large numbers of Brits who use cut price airlines to spend a week in the Mediterranean sun in mid-summer? None of these boys and girls have built up a tan, and then suddenly expose their skin excessively for 6 days before flying home. Seems to me to be a perfect formula for developing melanoma in 20 years time.

Postscript: Don't get me wrong: I am all in favour of large numbers of young ladies suntanning in the parks at lunchtime, wearing as few clothes as possible...

For anyone interested in reading more:

Health Research Forum: http://www.healthresearchforum.org.uk

CANCERActive article: http://www.canceractive.com/page.php?n=509

Quackwatch: http://www.quackwatch.org
and particularly the page A Special Message for Cancer Patients Seeking "Alternative" Treatments, at http://www.quackwatch.org/00AboutQuackwatch/altseek.html

Week 13 - 25% of the way!

2006-06-26T19:04:00.000+02:00

Now there’s a thing …
Somehow I have reached 25% of the way. Only 39 more weeks to go! Here’s a view of how far I have come, and how far still to go:

Status report at the quarter mark

The interferon seems to have settled down to a predictable level. Three times a week I take 1000 mg acetominophen, about an hour before the injection. I am now using a generic which is half the price of the big brand names, and seems to work just as well.

The injection process is no problem. I do this just under the skin on my stomach, rotating around, one week on the left and the next on the right, and so on. The areas around the injection sometimes develop dry skin, with pink patches visible after shower or bath. Once or twice there has been a slight bruise visible. I can feel the effect of the interferon within about 15 mins. It is difficult to define the feeling: I feel difficulty in concentrating, and get rather irritable. No pain. My muscles start aching later in the evening. I generally take another 1000 mg acetominophen when I go to sleep.

Generally I cannot sleep through the whole night, and may take one or two tablets in the early hours. Often it is sufficient just to get up, walk around and stretch to relieve the muscles and then I can get back to sleep. But we are currently in the middle of winter. Our house is at the bottom of a valley and gets very cold at night, so bed is definitely the best place to be!

I try to take the dogs for a 30 minute brisk walk every afternoon. The only time I miss this is if I’m out somewhere and don’t get home by dark – It’s too cold at present to walk in the evening.
I also go to gym, mostly twice a week. I can’t do this the day after my injection, so there are only a few possible times. At the gym I first walk twice around the outside of the building to warm up, then do a circuit, and at the end again around the building. I have built up to about 30 minutes, and I have been increasing the number of repetitions on the machines.

It is interesting that I feel light headed at times. This is more noticeable the day after the injection. It looks like the oxygen level in my blood drops down when I am quiet. If I then get up suddenly, or start some activity, it takes a minute or two to bring the oxygen level up. Once I have been active for a few minutes the problem disappears – It does not worry me at the gym or when out walking.

I have reduced my workload, and only need to get up early one day per week, to attend a project meeting. On all other days I can have a relaxed breakfast and read the morning newspaper before starting whatever work is on the programme. I am taking advantage and looking after myself!

Obviously life does not always fit neatly into the interferon schedule. But the schedule can be shifted around to some extent. For example, if I really need to go out on Wednesday evening, then I delay Wednesday's injection to Thursday, and Friday's to Saturday, and then we are back on schedule.

So, how do I feel? Well, the days after injection I feel some aches, and not very strong. If I have to go out I take it gently. By the afternoon I am feeling stronger, and can go shopping or walk the dogs. The next day is much better. I can’t say I feel completely normal, but good enough to go out, see clients, etc. I don’t have a lot of stamina, and this limits what I can do. Monday I feel even better, as the last injection was on Friday. So I use Monday if I need to do a lot of running around.

Mentally I am feeling good to excellent. I am keeping very busy, with projects and work at home. I have been able to do a lot of reading, which previously I did not have time for. There are a few projects which I will write about in my blog over the next few weeks. I have spent a lot of time researching melanoma and interferon experiences on the web. It got to the point where I wondered whether I was spending too much time on this, and neglecting other work. It is possible to get drawn into a topic, and lose sight of other aspects of life. However, I think I have got the balance more or less right. Looking back, I can see how I have been steadily improving my knowledge, and finding new aspects. For example, I realized that my diet is important, and I have been consulting a dietician, something I would not have done previously.

Update on my diet

I have managed to lose about 2 kg. But my new diet allows me to eat what seems like a lot more. Here’s a picture of what I had for lunch today: The fish are pilchards in tomato sauce. (Does not include the small slice of apple tart!) I have been having a lot of fun with my new diet - Will post about this in a week or three.

I started making a list of all the negative things about interferon, and then decided to make it more positive. . .

10 Things I enjoy doing now

1. Having time to read and explore anything that interests me
2. Meeting my wife in the afternoons for tea, shopping
3. Catching up on projects at home
4. Walking my dogs every day
5. Enjoying the highveld weather at my home (rather than locked away in a dark and dingy office all day!)
6. Meeting friends for lunch
7. Experimenting with new foods
8. Movies in the afternoon
9. Writing my weekly blog
10. Meeting new people through my melanoma challenge!

10 Things to look forward to when the interferon is over

1. Sleep right through the night
2. Go out to movies on Friday evening
3. Go out to dinner, any evening
4. 10 days in the Kgalagadi reserve
5. Kruger National Park
6. Start building our retirement house
7. Fly without the hassle of carrying my IF kit
8. Sex!
9. Able to take on more significant consulting work
10. Get rid of this annoying post-nasal drip.

How to live to 100 ...and enjoy it

2006-06-24T16:41:00.000+02:00

New Scientist, 3 June 2006: Centenarians are the fastest-growing demographic group across much of the developed world. New Scientist plunders the emerging science of longevity to find out how you can maximize your tally at the final checkout.

1. Go for the burn. “Hormesis” was once considered flaky, but in recent years it has been shown that small doses of “stressors” such as poisons, radiation and heat can actually be good for you.

2. Don’t be a loner. Relationships with family, friends, neighbours, even pets will do the trick, but the biggest longevity boost seems to come from marriage or an equivalent significant-other relationship.

3. Consider relocation. The world is dotted with longevity hotspots. But why? It could be something in the water. Or it may be that these are statistical flukes.

4. Make a virtue out of a vice. What is the point of living to 100 if you can’t enjoy a few wicked indulgences? The trick is to choose them wisely. Some good ideas: A glass of wine a day; regular sleep; chocolate!

5. Exercise the little grey cells. By our mid-twenties our mental faculties have already reached their peak in many respects. After that, things start to decline. Study after study has shown that intelligence, good education, literacy and high-status jobs all seem to protect people from the mental ravages of old age.

6. Smile! Tom Perls reckons the key to longevity is how you respond to stress. Although a little stress may be good for you, sustained and severe stress can cut your life expectancy.

7. Nurture your inner hypochondriac. If you’re sick, go see a doctor! Look after yourself, and don’t ignore warning signs. There are early warning tests which can assist to detect diseases which otherwise have no symptoms, eg; cervical screening; prostate cancer PSA; etc.

8. Watch what you eat. The bad news is that there won’t be much eating involved. The only proven strategy to extend lifespan is caloric restriction – deliberately eating just enough to get by. This extends the lives of mice by about 30%.

9. Get a life! What you need is a bit of excitement along the way. Take some risks. Not only will new experiences bring you pleasure, you may also find they have added benefits.

Longevity is surely not an end in itself. As TS Eliot said: “Only those who will risk going too far can possibly find out how far they can go.”

Week 12 – Diet and good eating

2006-06-21T21:10:00.000+02:00

Strange how the human mind works… And interesting how one thing leads to another, sometimes in a serendipitous way. Things seem to come together as though they were planned…

When I started on this interferon kick I was aware that I was a little overweight. I was going to reduce my weight, but of course was too busy to focus on it. BI (Before Interferon) I went to a gym regularly, but somehow the exercise just made me eat more. Then the interferon introduced too much stress, and I decided not to make any other changes.

I have recently been reading some very interesting books, on how life developed, and part of this introduced (reminded) me of proteins, amino acids, etc. I read a few books on diets, herbs, food supplements… And I came to two conclusions: (1) It is fairly complicated, and one has to work hard to build up a detailed understanding, and (2) There are many people out there with strange ideas, some of them really wacko!

So, one thing lead to another, and I went off and consulted a qualified dietician. I’m sure I would not have done this kind of thing previously, but now I have a very serious objective: To do the absolute best I can to ensure that the IF treatment works.

Maryke has a BSc in Dietetics and is very serious about what she does. I told her my objective and we worked through what I eat, how much I exercise, etc., and I gave her as much information as possible about the interferon. Now we are working through some basics, and I’m starting to change my diet. In some cases the changes are things that I know about, but previously ignored: Reduce sugar intake; cut out refined products; eat more fruit & veges; etc. But some of the other principles surprised me. For example, I did not realize how much fat I was absorbing from things like roast chicken, processed meats, cheese. Rhetorical question: Why are all the things we like so bad for us? Fortunately I have always enjoyed fruit, salads and vegetables, so the shift does not seem so difficult.

It is interesting that Maryke has come up with a set of dietary guidelines to reduce or prevent cancer (in general; not specifically melanoma). The basic rules are fairly straightforward:

1. Low fat, avoiding animal products as far as possible
2. Favouring whole grains over refined grain products
3. Include plenty of vegetables and fruits

Many people on IF and other cancer treatments encounter digestive problems, such as nausea, diarrhea, or constipation. The problem here is that these all mess around with normal absorption of foods, and can cause additional problems. I’m very pleased that I have not had these problems – In fact, my problem is that I cannot pass by the fridge without eating something!

So, where am I now? Well, I’m slowly shifting my diet, and I’m pleased that I have already lost about 1 kg. We have been introduced to some new foods, eg; legumes, which previously were not part of our diets. And I have discovered that it is almost impossible to get fast food which fits my requirements!

I asked about food and vitamin supplements. I was hoping that it would be possible to adjust one’s diet to provide all the components that one requires, without any further supplements. But it appears that our rich diet today makes this very difficult. The stores are full of all sorts of supplements, and the labels are complex and difficult to read. The advice I have been given is to take a conservative multi-vitamin and mineral supplement, which provides 80%-160% of the RDA, and to avoid anything with very high amounts, as these could interfere with the IF treatment.

Do not go gentle into that good night

2006-06-14T18:50:00.000+02:00

Many years ago I was introduced to the works of Dylan Thomas, through a BBC recording of Under Milk Wood. I originally had a copy on cassette tape, and recently bought a CD version, published by The BBC Radio Collection. Made in 1963, this recording features (a young!) Richard Burton as the narrator, with his rich Welsh voice, and a host of other voices. It starts “To begin at the beginning: It is spring, moonless night in the small town, starless and bible-black.” Thomas’ use of the English language in all its richness and variety always brings a lump to my throat.

Thomas was born in Swansea in 1914. In 1952 he wrote the following, during the final illness of his father, D. J. Thomas.

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning
they do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

You can listen to the author himself reading this lovely poem on the web at
http://www.poets.org/viewmedia.php/prmMID/15377

Dylan Thomas died in New York on 9 November 1953 and is buried in Laugharne.

Week 11 - This and that

2006-06-13T11:23:00.000+02:00

At a small game reserve near Johannesburg last weekend... Spot the error!

There is an old farmer’s story which is told in South Africa. At the end of the working day the farmer relaxes on the stoep (verandah) with his friends, smokes his pipe, with a cup of coffee or glass of something a little stronger. Their view is out over the maize fields, which have never looked better! The corn is higher than the proverbial elephant’s eye, green and heavy with cobs developing in long, curved rows. And the farmer and his friends complain, and complain, and complain… “There has been too much rain… the plants are too heavy and will fall over in the next strong wind… the strong growth is taking all the goodness out of the soil…, Where are we going to store all the grain?....” They go on and on, and you wonder how they can be so negative, at this time of plenty.

The reason is that the farmers, being close to the soil, and close to nature, know that there are evil spirits lurking in the trees, under the rocks, in the streams and rivers. If these spirits hear that everything is going well, they will be jealous and will do some mischief, to spoil the good crop. Something like a vicious hailstorm, or sudden heat wave….. So, to be on the safe side, the farmers complain, both in good times and in bad times!

I am getting tired of this interferon process; It is really getting quite tedious. Three times a week I inject myself, have a bad night, and the following day I have to take things slowly. I can’t do all the things I used to do, and have had to give up most of my consulting work. Last week I had a bad night, and in the morning when I should have been on the road to a client for an early meeting I could just not get up, and managed to arrive when the meeting was breaking up! My skin does not like this regime, and I have to use special shower soap, and expensive creams to avoid the itching.

OK, enough of the complaining! It’s lousy, we know that. But I have to be honest: I really seem to be doing quite well. I know that other people are having worse experiences and I am really grateful that my problems are relatively minor and under control. I can (mostly) arrange my life around it. I have been able to shift the routine by one day when I need to, and this seems to work OK. No one can guarantee that I won’t have further problems, but I’m trying to do everything to support the interferon treatment: Regular exercise , even if this is limited; Keeping active and involved in my normal life; Trying to keep a positive attitude; Looking carefully at my diet – I will have more on this in the next week or two.

There have also been some really positive things out of this experience: I have made new friends; I have found time to catch up on some home projects which I really enjoy; and I have had time to do some reading. I am one of those people who, when I discover something new and interesting, research and investigate to the extreme. You never know where research will lead you, and often you discover a whole new and fascinating world. So, I have been reading as much as I can about cancer, and melanoma in particular. Perhaps I am spending too much time on this…

I have just finished reading a really wonderful book: Richard Dawkins’ The Ancestor’s Tale. (At 528 pages this is not for the fainthearted!) The book has many themes, but perhaps the most relevant for me at this time is how much it taught me about how our bodies work. All the components: cells; RNA, DNA, proteins, genes, mitochondria, amino acids, etc etc are discussed again and again, in different ways, as we follow the development of life on our planet. It is interesting that the subtitle of the American edition A Pilgrimage to the Dawn of Evolution is subtly different to the UK edition A Pilgrimage to the Dawn of Life! I know that Dawkins’ views conflict very strongly with the Intelligent Design supporters, but don’t let that put you off: The book contains a large amount of extremely interesting and useful information, and gives an excellent idea of current knowledge of life and how it developed.

Week 10 - Never give in

2006-06-03T11:41:00.000+02:00

On October 29, 1941, United Kingdom (Great Britain) Prime Minister Winston Churchill visited Harrow School to to hear the traditional songs he had sung there as a youth, as well as to speak to the students. I found the original text of his speech and it rang a major chord for me. Here are a few extracts which I would like to share with you:

Why, when I was here last time we were quite alone, desperately alone, and we had been so for five or six months. We were poorly armed. We are not so poorly armed today; but then we were very poorly armed. We had the unmeasured menace of the enemy and their air attack still beating upon us, and you yourselves had had experience of this attack; and I expect you are beginning to feel impatient that there has been this long lull with nothing particular turning up!

But we must learn to be equally good at what is short and sharp and what is long and tough. It is generally said that the British are often better at the last. They do not expect to move from crisis to crisis; they do not always expect that each day will bring up some noble chance of war; but when they very slowly make up their minds that the thing has to be done and the job put through and finished, then, even if it takes months - if it takes years - they do it.

Another lesson I think we may take, just throwing our minds back to our meeting here ten months ago and now, is that appearances are often very deceptive, and as Kipling well says, we must "...meet with Triumph and Disaster. And treat those two impostors just the same."

You cannot tell from appearances how things will go. Sometimes imagination makes things out far worse than they are; yet without imagination not much can be done. Those people who are imaginative see many more dangers than perhaps exist; certainly many more than will happen; but then they must also pray to be given that extra courage to carry this far-reaching imagination.

… this is the lesson:

Never give in. Never give in. Never, never, never, never--in nothing, great or small, large or petty--never give in, except to convictions of honor and good sense. Never yield to force. Never yield to the apparently overwhelming might of the enemy.

All my thoughts and wishes are with every one of you.

Peter

Week 9 - Let's talk about exercise

2006-05-29T21:45:00.000+02:00

What a glorious day it was… After last week’s cold snap (we are going into winter here), this morning was like Spring. At 8 am the barbets were calling for all they were worth – I heard at least 3 males calling for the next hour. The temperature today went up to 23°C, making one feel pleased to be alive.

I have just returned from taking my two hooligan dogs for a walk. They get so excited, and they pull like huskies, so I get my upper arms and shoulders well exercised, apart from the actual walking. We have a standard route along the flood plain next to the river. Well, it’s not really a river, more like a stream with a small trickle of water, but it can flood quite respectably if the rain falls in the right place. Our route takes about 20 mins and gets the air into my lungs, and my blood moving.

I wanted to talk about exercise, and also get comments from others who are on interferon. When I started this voluntary torture program I read all the descriptions of the side effects. Apart from the very fuzzy “flu-like symptoms”, the highest numbers of problems reported were for fever, myalgia and fatigue. I only had a fever after the very first injection, so that has not been a problem for me. Myalgia - non-specific aches and pains - are another matter entirely, as I’m sure everyone is aware. The day following my injection I feel low, with aches and pains all over. I have learnt not to try to do too much, as I then run into serious fatigue and just feel worse.

But a certain amount of exercise seems to be good for me. I have never been a serious athlete, more like an itinerant amateur. About 20 years back I was living in Cape Town, and started walking on the mountain, and doing a little simple climbing. Then I started going to a gym, and I have done this irregularly ever since. At best I aimed at doing a gym circuit 3 times a week. I have found even this small regular exercise makes a world of difference. It has improved my general health, and reduced stress. Not sure if it has made much difference to my weight, as exercise improves my appetite!

Before I started on the interferon programme I discussed exercise with my oncologist. He was rather offhand… “Most people have great difficulty with any but the simplest exercise. Feel free to do what you can, but you will find your exercise extremely limited.” Well, it was a bit difficult at the start. Initially I did suffer from fatigue. I could not do the same amount of exercise as before. But I have been working on the principle that a certain amount of regular exercise will be beneficial, and so far it seems to be working. My routine now is to try to get to the gym about twice a week. I manage about 25-30 mins, including a warm-up walk once or twice around the building. I bought a heart rate monitor just for fun, and that is useful to check that I am working in the right range. I also try to take my dogs for a walk, and manage this on most days that I don’t get to the gym.

One principle that I have adopted is to recognize that I am not actually ill, it’s just the interferon! (Thanks to Holly for this insight) So, within reason, I should get up, get out, exercise my muscles and heart. And I have found that generally it works. If I wake up with muscles full of aches and pains in the morning, I have a choice: Stay in bed, take painkillers, feel sorry for myself … Or alternatively I can get up, move around, and get some exercise. As long as I don’t overdo it, the feel-good endorphins kick in and greatly improve the day.

There are days when I just don’t feel up to this, and I goof off to a large extent. But even on the worst days, I get to a point where I feel that getting up and moving around will be preferable to lying around, and generally this works out. Now I must mention that my stamina is not nearly as good as it was. I can do chores around the house, or work in the workshop, or clean the pool, but suddenly I get to a point where I feel I have done enough… I run out of energy, and pushing on leads to feelings of exhaustion. So I have to pace myself, and as long as I get this right, I think I am doing the right thing.

One of my interests is teaching. Standing up in front of a class can take quite a lot of energy. I find I can cope for an hour or so, but then quite suddenly the fatigue sets in, and I need to stop. I have been considering taking on some more training courses, but I’m wary of a situation where I would have to handle 4-5 hours – I don’t think I would be able to do this at present.

So what’s the bottom line on all this? I think there are two principles:

1. I don’t have to treat myself with kid gloves. I can do a certain amount of exercise, within reason.
2. I am convinced that getting regular exercise improves the way I feel generally, and keeps me more healthy.

I wonder if there is anyone out there reading what passes for my wisdom? Out of every 100 readers, perhaps only one or two will write in with comments. If you have any comments on this blog I would love to hear from you. You can find my email address in my user profile.

Week 7-8 - How to get up in the morning

2006-05-26T11:16:00.000+02:00

It’s cold in Johannesburg. Minimum this morning was -1.0°C. Cold and dry, with a lovely bright blue sky. Fortunately the wind is not blowing…. And I just feel rotten! Nasty stuff, this interferon: We inject a much larger amount than the body produces, and the whole concoction probably introduces additional poisons. No wonder I feel like shit.

I rather stretched things this week. On Monday afternoon I had a good session at the gym – Feeling more normal, good to work the muscles and get my heart rate up. Then home for a nice hot shower and feel all virtuous. But Monday evening is injection time again. I was probably too optimistic – woke up in the middle of the night feeling sweaty and panicky.

And then Thursday I had rather a long day. After working a couple of hours at my desk I went off to a late afternoon professional meeting. This was interesting and reminds me that I must keep getting out and meeting people, in my business networking is critical to getting future work! But after that I went to my club committee meeting, and that took another 3 hours. By the time I got home I was feeling tired and stressed –obviously trying to do too much.

So this morning I really did not feel like getting out of bed. J went off to work as usual, leaving me to decide what I would do. I am very methodical about eating, so I made some breakfast, and then read the newspaper. I’m trying to describe how I feel: A little low, muscles aching a little; a general feeling of lethargy. Am I feeling ill? Will I feel better if I get up, get dressed and do something? Or will I just feel worse? I listened to the radio and snoozed for a while.

At some point I decided to stop feeling sorry for myself, got up, got dressed, shaved, brushed my teeth, made the bed, cleared away the newspapers, and stacked everything in the dishwasher. And I feel much better. This is the pattern: Although one feels bad from the continuous effects of the interferon, it is definitely better to get up and moving about. So I have some minutes to write (tedious), and about a dozen telephone calls to make, people to chase. And I must get the humidifier out of storage, clean it up and see if it still works… The weather is suddenly so dry that there is static everywhere, and I wake up with a very dry throat.

And I need to get the swimming pool cover out of storage, and get some volunteers to help me to put it out. Then I don't need to think about the pool until at least September.

Week 5-6 - A new challenge, and a step forward

2006-05-15T19:54:00.000+02:00

It looks like each week I get introduced to another new challenge... In week 5 I suddenly developed a rash on my arms, legs and back. Extremely uncomfortable, and itchy as all hell. The oncologist recommended a moisturising cream, but this did not help. I found I was scratching and causing more problems. Paid a visit to the GP as I could not immediately see the onco, and she prescribed Advantan cream, containing cortisone, as well as an antibiotic. Then saw the oncologist - He said this was a Good Sign, as it indicated that the interferon was having the right effect on my immune system. He prescribed two different meds for 10 days - Zyrtec and Aterax. Aterax is a tranquiliser, but is also used in urticaria and pruritis - So I take this at night! The rash has gone down and seems to be settling out. Still using a moisturiser morning and night - As a typical male this is something I have never done before. Maybe I will end up with a better complexion!

I have been reading other posts on the internet, some other blogs, and also had a look through the discussions on the MPIP bulletin board - www.mpip.org - An excellent resource. I suppose I knew this before, but it really put my "problem" in perspective - I am one of the lucky ones, in more ways than one... First and foremost, my melanoma was limited and it was possible to remove it by surgery. This does not mean I am in the clear, but at least I have a fighting chance. Second, I have access to the best medical assistance in the country. And last, but by no means least, I have the support of my wife, family and frinds.

I have been gradually settling into this new regime, but it keeps changing. The day after each Interferon injection is not good. My sleep during the night is disturbed, and I have been staying in bed for at least the following morning, feeling rather sorry for myself. When I do finally get up I feel weak, and feel mentally limited. It takes tremendous effort to achieve anything. I find difficulty in starting any task, and then have difficulty in following through.

By Week 6 I thought this had settled down. I was resigned, if that is the correct word, to having 3 "bad" days, and 4 "relatively good days" each week. However, the bad days have been improving and I have been able to make some progress on some tasks and small projects. Now I am setting my sights on 4 "good" days, and if any of the other days are reasonably good then I count it as a bonus.

I was so pleased to make some progress on a small project last week. As mentioned above, I have found it difficult to start anything. It has taken a large amount of mental effort to do the jobs which need to be done. The project I achieved was to build a small battery charger for my burglar alarm system. A few weeks back the old trickle charger which I used had packed up. It was nothing very special, but it did the job. I tried to buy a replacement, but the stores just did not have what I wanted. So I started with a bit of research on the internet. I found some application notes and some design notes. Now, I have a large workshop filled with proverbial "junk" boxes. To cut a long story short, I found all the components I needed, and managed to build the device, test it out, and even built it into a neat little case! From start to finish was only 3 days! Now, that's what I call progress!

Week 1-4 - Starting Interferon treatment

2006-05-11T20:51:00.000+02:00

I started on Interferon therapy at the beginning of April. This involves injecting a small amount of Interferon under the skin, three times week.

The first injection produced a substantial flu-like reaction. Within 3 hours I felt shivery, and cold. Within another few hours my temperature went up to 38.7 °C. The temperature lasted for about 20 hours, and then settled back to normal. I felt general aches and pains, and some tiredness.

From the second injection I no longer had any temperature increase, but there are other definite effects. I can feel the effect of the injection within about an hour or so. The first effect is to make me feel generally sleepy. After this I develop general aches and pains. The general idea is to inject in late afternoon or early evening, so as to allow you to sleep through the worst of the effects.

I was advised to take Panado (Paracetamol; Acetaminophen) to counter the effects. Aspirin is not recommended. I experimented with various different plans. By the end of April I have settled on 1gm Paracetamol just before the injection, and then the same at some time during the night.

The day following the injection can be quite variable. Generally I feel tired and indecisive. Some days are better than others. I have reduced my workload so that I don’t have to go anywhere on the days after injections. If I feel better and am able to do more then that is a bonus.

I do the injections myself. The process is quite simple and painless. Obviously care should be taken with this process, so as not to introduce any further problems: Follow the instructions carefully!

After the first two weeks I had a couple of days where I felt extremely low – Major depression. I discussed this with my GP and she recommended an anti-depressant. I started taking Cipralex, but found it really made me more sleepy than ever – I came to the conclusion that the depression was temporary and did not justify taking another drug. We will see how this works out!

February-March 2006 - PET Scan and surgery

2006-05-11T19:35:00.000+02:00

Early this year I saw my GP for my annual medical checkup. There were no issues that I was aware of, and in fact no problems were picked up. However, I did discover a small lump under my right ear, and mentioned it to my doctor. I went to a specialist, and he referred me for a needle biopsy. Unfortunately this came up positive for Melanoma.

The next step was to have a scan done. The purpose of this was to find out how far the Melanoma had spread. The technique used was a PET Scan, which is a new and expensive technology… Fortunately we found it was limited to the Parotid gland. [You can read a good description of PET scanning at http://en.wikipedia.org/wiki/Positron_emission_tomography.]

My surgery took place early in March 2006. The Parotid gland was removed, together with a few adjacent glands. The pathology report indicated that the problem was limited to the Parotid gland.

Having surgery is never pleasant, but everything went off well. I recovered rapidly from the surgery, and was able to get back to work within a couple of weeks.

The oncologist wanted me to start on Interferon treatment as soon as possible. However, I delayed this for a week as I had a few other priorities in my life: The wedding of my niece. So once the wedding was over we proceeded to the next step.

Over the last year I changed my job. From working for a large company, I now work as an independent consultant. This was a major change for me... I was just getting the change sorted out, and starting to have some success, when this new challenge came out of nowhere and hit me for a six!

I need to try and describe how all of this affected me. Looking back, I remember being gobsmacked by this sudden change in my life. I remember a feeling of shock when I first got the news ... I felt this could not be happening to me; and perhaps if I ignored it, it would simply go away. But reality is not a fairy story. The problem would not go away.

Now, I have always been a pragmatic person. When faced with a problem, I face it seriously and work away until the problem is solved. This is not always the easiest path, and I have had some challenges in the past. And some problems are not easily solved...

In this case I had to recognise the problem, and then work out a way forward. I did some research on the internet, and discussed it with the oncologist in some detail. You can do the same searches yourself - The following is my summary of what I have found:

Melanoma is a serious cancer. It can spread very rapidly.
Even after the visible melanoma sites have been surgically removed, there is still the possibility that melanoma cells will migrate through the body and start new growth sites.
Interferon is the best (or only?) treatment available. The way in which this works is not properly understood.
The aim of Interferon treatment is to assist / encourage the body to destroy melanoma cells.
First prize would be to destroy all melanoma cells. Second prize would be to delay the development of new melanoma sites. Third prize = no impact on development of new sites. I gather that the statistics on the above are roughly one third each way.

So, the crucial question must be: What can I do to achieve the best outcome? Or, put another way, how can I shift the statistics in my favour? The answers must be as follows:

Take the Interferon treatment seriously. Follow all the instructions carefully - Give it a chance to do its job.
Maintain good physical health as far as possible. Get as much exercise as is practical; eat well; Minimise bad stresses on the body.
Maintain good mental health. Cultivate and maintain a positive outlook.

Background to this blog

2006-05-11T18:21:00.000+02:00

Over a period of many years I have had various minor, and some not-so minor, skin cancer problems. At the end of 2004 I had quite a scare, with a Melanoma on the side of my face… This was removed, quite satisfactorily, and life settled down again. However, early in 2006 I discovered a swelling on my neck. This turned out to be Melanoma in the parotid gland. I had surgery to remove this in March 2006. The surgery was seen as successful, and I have been placed on an Interferon treatment program.

The treatment program will extend over the next year! I did some research on the web, and found useful information on Interferon and its effects. However, I found very little in the way of personal experiences from other people. I feel the need to communicate with others who may have gone through the same treatment. Hopefully I will learn more about it, and be better able to handle the effects. And perhaps this may also be useful to others.

This blog will not be a daily recitation of what I did, or did not do! The plan is to add an entry each month, with an overview of the most important features of the month.

Please let me know if you find this useful.