Week 13 - 25% of the way!

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

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

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

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

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

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