So, there I was, screaming on the bed in far worse agony than the leg had caused. Number two son was home and he rushed in looking worried and not knowing quite what to do (poor lad). After a minute or two, the pain died down enough for me to prop myself up and breathlessly pant "Ring ..... for ....... the ..... ambulance".
Well the ambulance came and I was taken to A & E (Accident and Emergency) and evaluated. They dosed me up and sent me home that afternoon without taking an X-Ray presuming it was a severe muscle problem. Thanks guys, I spent the next two weeks in agony, living between my armchair and an adjacent commode as I could move no further (except to occasionally stagger to the downstairs loo propped between a walking stick and my wife's shoulder).
Meanwhile my G.P. (General Practitioner) wasn't happy and took some blood tests. She rang to say there was something wrong with my blood and I should go back to A & E for re-evaluation. I thought, "uh oh, she's not saying what is wrong, must be bad, maybe cancer".
This time they did a proper job (if I was American I should have sued for the first time!). This revealed a collapsed vertebra. So I was wheeled off to Orthopaedics, put in a metal brace and made high as a kite on morphine. As there was no obvious cause of the collapse, they too took blood.
So there I am, day 3, lying on my back, in my brace, doped up to the eyes, when they came in and said they'd found the cause, that it was an incurable but treatable cancer called Multiple Myeloma. I said words to the effect that I had more immediate things to worry about and I'd get round to worrying about that later. So between that attitude, and the previous inference from what my G.P. had said, it wasn't the knock back shock it is for some people.
A few days after that I was transferred to Haematology and started on chemo-therapy. But before they could start the treatment , which involved the use of Thalidomide, I had to sign a declaration that I would not get pregnant! Just had to laugh! The partially numb feet I have been left with are somewhat less amusing though.
Well, the brace came off after 3 months, and the chemo finished successfully after 32 weeks. We then had a pause for 6 months for me to get my psychological breath back before we did high dose chemo and auto stem cell transplant. Just to explain, the relapse time is short after normal chemo, the high dose treatment roughly doubles that time, it costs you your hair and has minor mortality risks, but hey ho, ya have to do it under the circumstances.
A number of things about the high dose treatment amused me. During the 30 minute infusion, I had to be sucking on an ice lolly! Apparently it reduces the risk of mouth ulcers. The next day, when you get your previously harvested stem cells back, they come in a big liquid nitrogen flask, so when the top comes off and the clouds spread out, you can't help but hum the Dr. Who theme! And because the treatment doesn't knock you sideways for the first week, I ended up staying in the 5 star hotel opposite the hospital for the week (complete with panic button) because it costs them less than a hospital room!
Of course, one of the side effects of the high dose chemo is that you lose all your hair. Damn. It grows back seriously slowly. But now it is back. It is dark brown where it used to be light brown, and it is as curly and wavy as all hell. Can't do a thing with it! (See pic to left and compare to homepage pic)
Now? I'm doing my best to enjoy things in the few years till relapse, and by and large I am succeeding. My back is a bit limiting because I am now 3" shorter, so the muscles are all the wrong length for my frame, which means I get severe back ache after a very few minutes of activity. The most I can do is 15 minutes without assistance, but if I walk with a stick, I can manage a bit over twice that. So yes, I'm sort of having a good time within that constraint, but there is never a day goes by without considering, however briefly, just how little time I may have left. Only 1 in 3 make it past 5 years you see. (Update 2013, the stats have just been updated, it's 10 years now, yee hah!)
That 3" shorter business confused the hell out of me the first time I got back in my car. I was convinced someone had altered the height of the seats, even though they had no height adjustment! Eventually I twigged that it was me that was different. Had to laugh some more!
My friends say I'm awfully brave, by being as cheerful as I am, but I don't see what else one can do.
And please, when the time comes, don't say "lost his fight against cancer". I'm doing nothing, just sitting here trusting the medics and the drugs, that's hardly what I call fighting, so don't say it. Anyway, something else may yet get me first! That's a thought which appeals to my twisted sense of humour!
Footnote 1 : Well, several years have passed since I wrote the above. I think therefore I need to point out that just over 10 years after treatment I'm only just starting the end of my first remission chemo (April 2021)! Yeah, I know, it's not what the stats say. So how did that happen? Well the only thing that changed was that 3 years in I read a summary paper from a conference on MM that was attended by all the leading experts on the subject. Right at the end of two sides of A4 paper giving one paragraph summaries of the papers presented was a paragraph saying that there was growing anecdotal evidence that a glass of red wine a day was beneficial in extending remission periods. So that is what I have been doing! It seems to work, at least for me. I even graphed out my para-protein levels and you can see clearly on the graph that there is a sudden leveling off of the rate of increase at exactly the time I started to do that! I have had less opportunity to follow up on the final paragraph of that paper which made similar remarks with respect to Turmeric, due to the family of four all being grown ups and at home, which limits my ability to dictate the family menu! Not being a health food shop afficionado, I hadn't realised that I could still use that information! But about 6 months ago it finally impinged upon my consciousness that you can actually but Turmeric capsules, so that is what I'm also doing.
Footnote 2 : It may not be a community any of us want to belong to, but the fact is
that us sufferers are some sort of community. This has an odd problem for me. It is difficult to relate to
that community when you are beating the stats by serious amounts! You can feel the awkwardness that arises when,
as is inevitable, one compares notes with fellow sufferers. So, can I ask my fellow "doing really well" sufferers
to use the feedback link above just to let me know you exist please? We don't have to stay in touch,
though you can if you want, it's mainly just to stop feeling like some freak of nature, that there are more
like us.
As of September 2023 for example, my Para-protein level had been at virtual zero for 27 months into my second
remission. Weird huh?.