For many years I’ve not liked Friday the 13th, that was always the day on which things went wrong. Not disastrously wrong in a life changing sort of way but wrong nevertheless. Just to be clear things also went wrong on the other 364 days not just when Friday fell on the 13th. Just to be clear about something else, this piece includes the “Part 2” simply because I already wrote one piece entitled Friday the 13th but then trashed it in a moment of frustration.
So why is it that on what is now Sunday the 15th I’m writing about what happened on the 13th? The simple answer is that I just didn’t get around to doing it earlier so now is as good a time as any other, and as I can’t sleep despite the hour it’s possibly a better time than any other right now.
This Friday 13th was the first day I’ve been out of the house to do anything other than see medical people since I had the biopsy. Prior to that I’d been going into the school at which my wife works to work with some of the kids on a 1:1 basis and to join others in PBS activities but hadn’t gone in since the biopsy as I had the large dressing on my neck. One of the students approached me and asked why I hadn’t been in to school recently and I explained it was because I’d had a problem with my neck and needed surgery. His reaction stunned me. He asked if I’d been shot! I think that, for me, more than anything else I’ve seen or heard in the eight or so years I’ve been going into that school, showed me the kind of lifestyle these young people have to live within. It made me question once again whether a society in which some people are hugely rewarded and seem to abuse the privilege by avoiding taxes is one of which we can be proud when there are so many social issues to be addressed which are not simply because there isn’t enough cash in the treasury’s coffers, although strangely there always seems to be enough to buy more guns, bullets, bombs etc to fight a foreign war.
Anyway, my lab test results had still not come through so I phoned the doctor’s office to ask about them and they hadn’t had them either. Jamie promised to chase them up and did so and phoned me back. The news was that the second opinion had been received but it differed from the first so the sample has gone off for a third opinion. It seems that both pathologists agree that it is Hodgkins Lymphoma but not which type. Now, this was news to me. I didn’t know there were different types of Hodgkins but there are – four of them and details can, of course, be found in Wikipedia. Wikipedia does a better job of explaining Hodgkins than I could possibly do so I’m not going to repeat things here. Despite being a month into this, tonight, or rather, this morning, is the first time I’ve really looked at the symptoms and it’s surprising how few of them I have. Wikipedia gives the following list of symptoms (I’ve edited them for brevity so please follow the link for full details):
“Lymph nodes: The nodes may also feel rubbery and swollen when examined. The nodes of the neck and shoulders (cervical and supraclavicular) are most frequently involved (80–90% of the time, on average). The lymph nodes of the chest are often affected, and these may be noticed on a chest radiograph.” Well, yes, lymph nodes in my neck are swollen.
“Itchy Skin” No, I’ve not had this, though, naturally enough, I need to scratch my left leg at this precise moment!
“Night sweats” There were a couple of nights maybe six or seven weeks ago now when I woke up sweating in the night but then this is Florida.
Unexplained weight loss” When I first came to Florida almost nine months ago now I began to lose weight but it was at a steady rate of a pound or so each week for a couple of months, but then it stopped and, if anything I’ve probably put on a pound or two lately.
“Splenomegaly: enlargement of the spleen occurs in about 30% of people with Hodgkin’s lymphoma. The enlargement, however, is seldom massive and the size of the spleen may fluctuate during the course of treatment.” Now, this would explain why doctors have been prodding, poking and squeezing me, but so far as I know I don’t have an enlarged spleen.
“Hepatomegaly: enlargement of the liver, due to liver involvement, is present in about 5% of cases.” Likewise with the liver, so far as I know it is just fine and dandy.
“Hepatosplenomegaly: the enlargement of both the liver and spleen caused by the same disease.”If I don’t have either then, clearly, I can’t have both.
“Pain following alcohol consumption: classically, involved nodes are painful after alcohol consumption, though this phenomenon is very uncommon, occurring in only two to three percent of people with Hodgkin’s lymphoma… The pain typically has an onset within minutes after ingesting alcohol, and is usually felt as coming from the vicinity where there is an involved lymph node. The pain has been described as either sharp and stabbing or dull and aching.” I’m not a big drinker, nor am I a frequent drinker but over Christmas I had a couple of beers and a couple of glasses of wine without feeling any discomfort at all – not even the next morning!
“Back pain: nonspecific back pain … has been reported in some cases of Hodgkin’s lymphoma. The lower back is most often affected.”
“Red-coloured patches on the skin, easy bleeding and petechiae due to low platelet count…”None of these at all.
Given all of this I’m beginning to wonder whether the provisional diagnosis was in fact correct: my oncologist actually commented to the effect that he’d thought it would be identified as non-Hodgkins Lymphoma. One of the surgeons was explaining to me the difficulty of making a pathology decision as to type because of the difficulty of discovering the cancer cells which are wrapped in others and which ca be easily overlooked. So, perhaps it is as well to have a third opinion before we start treatment.
What else was there for Friday the 13th? Our attorney’s office called to say that they had received a letter from the Immigration Service to the effect that my appointment has had to be cancelled due to, and I can’t actually remember which of these it is, either “unforeseen circumstances” or “circumstances beyond our control”. As the interview with the immigration service was to be in the morning of the day on which I might begin chemotherapy I was hoping to deal with it and have it out of the way before the side-effects of chemo make what should be a straightforward interview a tiring and perhaps even daunting challenge to be overcome only with significant physical and mental effort, not to mention the doctor’s warning that I will need to stay away from people who are ill and where better than to encounter strange germs than in a government office dealing with immigrants?
Then it was off for my PFT, a test of the ability of my lungs to breath efficiently. Al, who did the test, was a great guy and asked if I would object to a student being present during the tests in order that the student could see how it was done in practice rather than just reading about it in a book. Naturally I had no problems with that, people have to learn and there’s rarely a better way of learning how to do something than actually doing it but, if you can’t actually do it yourself, seeing someone else do it is a reasonable second place. So, where was the student? Good question. He was late. He’d used the same satnav/gps we had used and it had taken him to the wrong place too. Not far away but pointing in the wrong direction to see the hospital. Anyway Al and I had made a start when the student arrived and things were good from there on and seem to confirm my theory that, apart from this blasted lump on my neck I’m pretty healthy for someone of my age.
The emotional strain of supporting each other is beginning to take its toll though. Despite the cancer having brought my wife and I even closer together the strain of trying to be cheerful and supportive of each other is making us both edgy as it drains our resources. On top of that there are some differences of opinion. My wife thinks we should find support groups, either on line or real ones in order that we may gain insight and information. On the other hand I really, really don’t want to do that and I’m not totally sure why not. I think there are a couple of reasons at least. The first is that if I want specific information on a treatment I can go tot he web and look it up on a reputable site and know that it is probably up to date so what need of a support group there? The second is, I think much more nebulous. I don’t really feel the need to reach out to anyone other than family right now. I know I am supported and surrounded by love from family and friends and that prayers are being said by friends of differing denominations and creeds to seemingly different gods so I really don’t see what I would gain from being involved with strangers at this point. The third one comes down, I suppose, to thinking I know what is coming for me up ahead and either not wanting to know or believing that I already know. I have friends who have survived cancer, and I’ve had friends and family who haven’t so I think I am at least sufficiently informed at the moment, and as the oncologist said “That’s a conversation for the future.” Maybe that’s why I don’t want to join a support group, they are about the present and I want to look to my future. That sounds very judgemental of me particularly as I haven’t been on any such sites to find out for myself, and that’s my failure not theirs. I suppose what it comes down to is that I have faith in my medical advisers and I’m certain of the love and support of friends and I don’t see what more I could really ask for. Having said that, then it seems pertinent to ask why I’m writing this blog, and I have to admit I don’t have an answer for that!