Following a stem cell transplant, they count the days starting with Day 0, D +1, etc. I’ve no idea what day post-transplant it is now, but I do know that today is Year +1. Yes, it’s the anniversary of my diagnosis on 4 Feb 2011! And what a year it’s been!
There’s not been one day this last year when I haven’t been being treated, taking tablets, in hospital or clinic, or just dealing with symptoms and the side effects of medication and the emotional/psychological aspects of having cancer. And that’s not to mention all the paperwork, phone calls and forms to complete for benefits and allowances. Yes, it’s been a full-time occupation.
As I look back, I feel like the life I had before I was ill was almost someone else’s. I don’t feel especially sad about that, just detached and rather distanced from it.
In the initial period before the transplant, although I felt so weak and shocked, there was an element of buoyancy and dare I say a sort of excitement albeit tinged with fear, maybe from all the attention I received, whether medical or from family and friends. There was also the simplicity of just following what I had to do and a freedom from not having to do most of the more normal responsibilities of being an adult.
Then there were the odd moments/hours of forgetting for a while, when my attention was briefly distracted by doing or thinking about something else, like a simple bike ride, gardening, day trips, visiting friends, etc.
The few weeks between ending treatment and the transplant itself was a period of reprieve, even though that’s also when I lost my hair. It’s when I regained some energy and my taste returned and I was able to enjoy a family party and camping in the summer.
After the transplant I felt depressed, I didn’t even have a great reaction to hearing I was in complete remission. It was just a fact of what I was going through and only signified something that would at some point fail, so a degree of fear was attached. Perhaps had I known how short a time that would last, I might have celebrated it more. I don’t really believe that. At least now the relapse has come, that particular fear is no longer with me. I can’t begin to fully think about the next fear, so I’ll leave that for now.
So, here I am in the next phase and I find it quite strange that it’s almost exactly a year on and I’m starting treatment all over again. There’s that late January/early February spike in my life again. I certainly don’t feel that same early buoyancy but neither do I feel as low or lost as I did a few months ago. And I don’t feel as devastated as I did when I first heard about the relapse. Maybe I’m simply resigned to how things are, or just used to being ill. I suspect there’s a small degree of low level, understandable depression going on too.
Today I don’t actually feel very much at all, apart from backache, sweating and sleepiness due to a rather chesty cough/cold, plus a weird gummy, soapy taste in my mouth that started yesterday and hasn’t gone away, which I think may be due to the new medication.
I don’t have a lot to say. I just wanted to acknowledge the passing of a year… I’m still here, celebrating with a cup of tea and a very jammy doughnut!
I recognise a lot of the feelings you’re experiencing in the year following diagnosis of an incurable illness. All I can say is keep on with the tea and doughnuts!
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Hi jet I’m feeling for you !!!!! my anniversary’s a month off 1st of march still can’t believe it a year and all my treatment on !!!!l watched the big c prog last night why hasn’t she lost her hair ????? Keep your chin up Sandra xxx
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thanks for sharing Jet, i think you are doing really well being so active (when you can), but understand how sad and afraid you must feel at times. I’m here for you. xx
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Blimey! where has that year gone? I remember speaking with you last year and ‘diagnosing’ you with ‘flu because I seemed to be surrounded by ppl with similar symptoms. How stupid did I feel that you actually had cancer.
I am utterly inspired by the way that you have dealt with this; the fact that you are not a ‘victim’ and that you still go cycling, do your tai chi, you still go to the cinema, enthuse about your photography and you are now releasing your inner artist, wowza. Mostly I am in awe of how you have sought support for yourself and gently nudged us not to forget and be complacent around you, I salute your honesty and ability to strive to get it right for you.
Thank you, Jet, for being in my life and a big well done for attaining top trump 🙂
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Jet, what a whirlwind of a year you have had, almost going full cycle, from being newly diagnosed, having treatment, having a stem cell transplant, being in remission to relapsing around a year later. You have certainly packed it in and I admire your honesty and your emotional intelligence in dealing with it. You have often said/written stuff that I can identify with but couldnt express. Hope your chesty cough/cold is going and you are managing ok with the velcade.
Wendy xx
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