Interferon experience

My experiences as a melanoma survivor

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Location: Johannesburg, South Africa

Saturday, December 30, 2006

Week 39 - Christmas memories

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….

Monday, December 18, 2006

Week 38 - Aurora over Iowa

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!"

Monday, December 11, 2006

Week 37 - A neat project

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

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…

Friday, December 01, 2006

Week 35 - A Good Week

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!