The good news is that I now have the results of my PET scan and it’s clear: the cancer has been killed! The Hodgkin’s Lymphoma is no more! The relief is enormous particularly as my wife and I recently noted a lump on my neck more or less where the lymphoma had been and weren’t sure whether this was simply scar tissue from the biopsy or a resurgent lymphoma; happily it seems it is the former.
My body still seems to be in a kind of mixed up state as I am still losing body hair even though the same limb is now growing new hair where the hair first fell out. My beard has come back so that at least my chin now feels as it should do and my eyes are now once more defined by both eyebrows and eyelashes. I’m particularly happy to have eyelashes once again to stop all the tiny bits of stuff that had been getting in my eyes. The hair on my head continues to grow and it still looks as though I will have dark on top with white sides looking like some cheap toupee!
I do want to say a big thank you to everyone who has read and commented on my blog as the feeling of support that has given me has been tremendous and was, I think, a significant part of keeping up my morale which in turn has played a significant part in my coming through this so well. I particularly want to say a really big thank you to those of you who are having a much tougher time than I did, but who still took the trouble to read, comment and generally wish me well. It’s almost a cliché to say that you have been a source of inspiration for me but you have, and I took your ability to be positive as an exemplar: I know I will almost certainly never meet you but you have really played a very big part in my being able to deal with the morale of this god-awful disease and I hope I can repay some of that debt by giving you support as you fight your own battles.
Next targets are my Florida driver’s license – I have to start from scratch with a driver education course before I can apply for my Learner’s License and then the driving test itself. It’s now over a year since I last drove so I am very much looking forward to getting behind the wheel once again. By the time I take my test I’m hoping that my levels of stamina and concentration will be back at employable levels as I need a job, so, if anyone wants to employ me I’m available ;o)
Rather than my usual comments about how I’m getting on in my recovery from Hodgkin’s Lymphoma here are the top 10 one-liner jokes from the Edinburgh Fringe. Hope they bring a smile to your face. I have to admit it took me a few seconds to understand the first one!
1. Stewart Francis – “You know who really gives kids a bad name? Posh and Becks.”
2. Tim Vine – “Last night me and my girlfriend watched three DVDs back to back. Luckily I was the one facing the telly. ”
3. Will Marsh – “I was raised as an only child, which really annoyed my sister.”
4. Rob Beckett – “You know you’re working class when your TV is bigger than your book case.”
5. Chris Turner – “I’m good friends with 25 letters of the alphabet… I don’t know Y.”
6. Tim Vine – “I took part in the sun tanning Olympics – I just got Bronze.”
7. George Ryegold – “Pornography is often frowned upon, but that’s only because I’m concentrating.”
8. Stewart Francis – “I saw a documentary on how ships are kept together. Riveting!”
9. Lou Sanders – “I waited an hour for my starter so I complained: ‘It’s not rocket salad.”
10. Nish Kumar – “My mum’s so pessimistic, that if there was an Olympics for pessimism… she wouldn’t fancy her chances
Two days ago I had to go to my oncologist’s office for my port to be flushed. As I have yet to obtain a Florida Driver’s License my wife usually takes me, but, on Tuesday she was reeling from some flu bug and wasn’t really capable of driving, so I took the bus which left me with a walk of a few minutes to the office. Getting there was fine. The flush was fine and I set off to walk back, walking East and keeping South of Broward Mall. As I passed the mall I decided it would be a good idea to pop in and get a drink of water – I stress water as I wouldn’t want you to get the impression that I’d had something alcoholic which then clouded my faculties! I walked North into the mall, so to get out again I turned 180 degrees and walked South, exited the mall and turned left to walk East towards University Drive to catch my bus. Effectively I had walked in a rectangle from the northbound bus to the doctor’s office and back for the southbound bus with a slight diversion into the mall, or, at least so I thought at the time. The bus came. I swear it was a Number 2. I got on, paid my fare sat down and settled in for the journey. Suddenly the journey took an unexpected turn, literally, as the bus turned left across University. I knew that was wrong but I also knew the traffic lights were not working further to the south so I initially thought this might just be a temporary diversion. It soon became apparent that this was not a temporary diversion, a fact confirmed by the driver who told me “You want the one going the other way.” Naturally I got off the bus at the next stop. As I had no more cash on me for a bus fare I phoned my wife to come and fetch me and confirmed my geographic location on the intersection and said you’ll see McDonald’s on the corner. Yes, I got that wrong as well. I wasn’t on the South-east corner as I thought, oh no, I was on North-west!! Usually I can find my way around a strange town pretty well, can navigate my way along mountain bike trails and never got lost paddling my kayak, but, somehow, I think this trip from the oncologist’s will take a good bit of living down. I blame chemo-brain even though it’s about five weeks since my last infusion!
One other thing became very clear from that short bus ride and even shorter walk, and that is that I am not fit enough to make any sort of a journey. When a five-minute walk leaves your thighs aching you know you can’t walk very far don’t you, and when two thirty minute bus rides and two five-minute walks leave you needing to sleep for a few hours it’s pretty obvious that any journey will leave you reeling, so I won’t be returning to the UK for my mum’s funeral, instead I will hold my own vigil here in Florida at the same time as the funeral service takes place. I’m sure Mum won’t mind, she never wanted me to go out when I didn’t feel well!
One of the well known problems arising from having chemo is that your hair falls out. This I knew but I hadn’t realised that it would be from pretty well all over my body nor some of the implications of that happening.
The greatest impact on my morale came with the loss of hair from what, literally, emerged as the dome of my head as it just changed the shape of what I saw in the mirror each morning, but, possibly, the greatest loss of function and therefore of inconvenience has come from the total loss of my eyelashes and pretty much the whole of my eyebrows with the exception of a couple of long straggly hairs on each brow. Now these are areas of me about which I hadn’t really thought much before they went. I mean, I knew in a general sort of way that my eyebrows existed to stop things dribbling down my face and into my eyes, and that the eyelashes’ function was to stop things in the air from getting into my eyes: what I hadn’t realised was just how much stuff there was in the air for them to stop! With the loss of my eyelashes came two things, the loss of a visible demarcation line on my face which helped me to see “not me” in the mirror each day, but also, a continuing gritty feeling to my eyes which sees me flushing them out on a fairly regular basis.
Yesterday I noticed my eyelashes are beginning to grow back. At the moment they are little more than nascent hairs but, they are there, I am sure they are and I can’t wait for them to get longer so that (a) people can see them again and my face will have therefore taken one more step towards looking normal and (b) no more gritty eyes. Which of these two things is most important to me right now? Ah, that would be telling!
Why is it that when life gives you a kick on one leg someone or something always seems to come along and have a go at your other leg? I’m a Buddhist so I have to say I did something to create that event under the law of karma. In short I caused it myself and I should be glad it’s happening now as that means I’ve got it out of the way: it’s hard to remember that at the time it’s happening though!
Yesterday we realised that my wife wasn’t going to be home in time to get our almost overdue videos back to the library before it closed so I had to have an unexpected walk. It took about 15 minutes in late afternoon Florida heat and humidity. My legs started to feel week an wobbly after about 10 minutes, despite being some weeks out of chemo, but I knew that if I sat down getting up would be harder than finishing the walk. Anyway, when my wife got home she’d found a Publix selling “Brit Food” and had brought me Jammy Dodgers, Golden Syrup, Sarsons Vinegar and Heinz Salad Cream. Why had she done this for me? Because she loves me and wanted to try to cheer me up after the news of Mum’s death. Lovely.
I think I need to say right at that beginning that I know I am writing this post as a way of trying to find out just how I feel this morning.
A couple of hours I got a call from my daughter in the UK to let me know that my mum had died in hospital during the night: it wasn’t a surprise as Mum fell and broke her hip a couple of weeks ago and needed surgery which is never good when you are 89. A few days ago the hospital let us know that Mum had slipped into a coma and that her organs were about to start failing, so, no big surprise this morning to hear that she had died and I received the news quite quietly, some sadness which I can feel increasing as I write this, but no tears or histrionics from me, no sudden sense of loss or loneliness either. Mum had been afflicted by Alzheimer’s and other forms of dementia for the last 10 years, or possibly more as this insidious disease doesn’t really announce it’s arrival but builds up gradually from taking away minor items of mental facility such as forgetting where you left something to taking away pretty much everything so that you forget who you are. Looking back there was some point in those 10 years where Mum “died” for me and perhaps that’s why I feel as I now do. The other thing which is, I think, a big contributing factor to my feelings is that it’s now 12 years since I can pinpoint the first time Mum told me she wanted to die. There are lots of times when I can think of hearing people say they wished they were dead, but, generally, that’s just a statement with no real meaning except to express a severe reaction to something, however, with Mum, it was different: she really meant that she wished she could die. Looking back she was, at that point, aware of her diminishing mental facility (though she made sure to cover it up well!) and was clearly aware that she was starting to live a life which was diminished in quality and which would continue to diminish. I can understand that feeling. Over the succeeding years I heard the “I wish I was dead” and “I wish I could die” many, many times. On several occasions it was followed by a very plaintive look as she followed that phrase with “but I know you can’t do anything for me.” Talk about heart wrenching!!
I have my own beliefs about what happens to Mum’s life force now, although clearly I can’t really know, but Mum had a very clear vision of the Christian God with white hair and a white beard sitting up in Heaven on a throne in a blue sky with fluffy white clouds all around. It was a vision Mum got as a girl growing up in Gawber and attending the local junior school and, of course, Sunday School at the local chapel – Mum was always clear that they were “Chapel and not Church” when they were growing up as it seems, in Mum’s opinion at least, that those who went to the church were “stuck up and thought they were something”! Anyway I really hope that, for Mum, her vision of the afterlife holds good and that she is now re-united with her Mum whom she adored but I never met, her siblings, possibly her dad although she had no really clear memories of him as he died in a pit cave-in when she was quite young. Will she be re-united also with my dad? I don’t know as his experiences with the Duke of Wellington’s Regiment during WWII convinced him that there could be no such thing as God and the thought occurs to me that, maybe, after death what happens might just depend upon what we believe should happen.
Mum leaves behind lots of memories with me, my daughters and my grandchildren which are now making my eyes blurry so perhaps it’s time to stop writing and dry my eyes ;0)