Week 34 - Carpe Diem

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

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

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.