Week 9 - Let's talk about exercise

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

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

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

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

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:

1. Melanoma is a serious cancer. It can spread very rapidly.
2. 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.
3. Interferon is the best (or only?) treatment available. The way in which this works is not properly understood.
4. The aim of Interferon treatment is to assist / encourage the body to destroy melanoma cells.
5. 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

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.