Still standing

Three out of Four. Or Four out of Five, if you include the tumour markers: The latest CT shows progression, since January, in breast, lymph and liver. Good news is; bone remains stable – so I can still stand and walk, it’s just the rest of me that’s falling apart!

The breast is uncomfortable, misshapen, unsightly (not that anyone shows any desire to sight it, but you never know; I might want to tit-moon passing motorists!) and, at times, painful.

I don’t know if the involvement of the lymph is responsible for my tiredness and low energy or if that’s just the result of trying to get bike-fit, after a Winter of not cycling. Maybe 5 assemblies in one day would be enough to tire anyone….

And some of the liver lesions are slightly larger. But only slightly. And liver function remains normal, which has been used to prove both that it is cancer and that it isn’t and that it is and isn’t a concern…!

I didn’t see Dr Charlie, for the results – first time, I think, I’ve had results from someone else. I got Dr Hairy Arms, instead, who I’ve met before. And although I saw Anne-Marie in the corridor, and had a quick word, she wasn’t in with me. Which I’m more and more peeved about, the more I think about it. Dr Hairy Arms’ response to the CT was, still, to wait and see – do another CT in 8 weeks; judge the speed of the progression; use that to decide when to start chemo. Of course, I’m happy to stay off treatment but….with three sites of cancer involvement showing renewed activity and the tumour markers continuing to go up, maybe I should be biting the bullet and starting chemo sooner rather than later…

We had a chat about what chemotherapies are left; there’s the vinca alkaloids, like Vinorelbine, which Dr Charlie has mentioned before; there’s also platinum-based ones, though the side effects are pretty horrid for that one; and there’s one based on sea sponge that’s in late stage trials and looking very promising. And then there’s the new, non-chemo, targeted therapies which Dr Charlie’s pals, over in Research, are busy working on.

We did also touch on treatments to improve the breast – either to gain better control of the disease there or just from a cosmetic point of view. He didn’t really give any options there – partly, I feel, because he doesn’t know me as well, or know the details of my medical history, as Dr Charlie does; that I mentioned it at all indicates it bothers me quite a lot actually. And with Ann-Marie not present I’ll have to have that conversation again, with Dr Charlie, when I see him next – probably when I go for my next bisphosphonate next month.

I’ve always felt my mission/challenge/requirement is to stay well enough, for long enough, to benefit from the new therapies which will take over from chemo and push breast cancer firmly into the status of chronic disease and become something you die with, rather than something you die from. And six and a half years, without a single day’s sickness (well; more or less – no significant illness anyway) is pretty good going – but we could be talking 10, 15,  20 years before these new treatments are mainstream and fully developed. Which might be rather more of a challenge…

In other news, Mrs Hairylip, the Social Wanker, did a new assessment with me – the format has been changed and any Assessments on file are now Read Only so the errors and inconsistencies can’t be corrected. And anyway, they’ve got a different form to use now. [Insert eye-roll here!] So we did a new assessment, which is designed for frail old ladies and lists various daily activities and asks how often you need help with them and who gives that help. There’s a multi-guess tick box for responses which go from Never, through Sometimes and Frequently, to Very Often – all a bit vague and woolly but we ticked “C – Often” for most of the answers and “None” for Support (as in how much I get – pretty tricky for my sister to pop down from Dundee to cook dinner or my brother to fly back from wherever in the world he is this week to drive me to an appointment…!). Then Mrs Hairylip had a similar form to fill in before the responses got put into a computer and the computer said……

….I shouldn’t be getting the two hours a week support I currently have: I should have SIX hours a week! We’re still working out the phrasing of what that support should be; I’ll get it as Direct Payments but the DP request needs to say what it’s for. I’m trying to steer Social Services into keeping the wording quite general – Mrs Hairylip was all for “To pay for a Driver when chemo makes me tired” which is far too specific and doesn’t allow for the cancer itself to make me ill and incapable! I’m not sure how I’d set about finding and retaining a cleaner/laundry person/driver/gardener/cook that I might want at less than a day’s notice and need for a couple of days or a couple of weeks, or a month or two, or forever……I’ve found one potential company and they might know of others. But some indication, at least, that there is a modicum of understanding that I do actually have a need for support, which I currently do not receive – which sets things up to allow for an increase in that need, as the cancer progresses and my condition worsens.

Mrs Hairylip’s suggestion shows she, like most people, is still rather stuck in this mind-set of “chemo makes you ill” but that cancer doesn’t, or at least isn’t making me ill, because I’m not thin and drawn and grey (or yellow) and bald – therefore only treatment makes me ill, and not the disease I’m being treated for – err, no! And all people with cancer are old (or under 6 and cute) and too old/ill to work – so all alternative therapies/support groups/etc are at times to suit them and tough luck if you’re still struggling to stay in work; you’ll have to do that on your own, without any support! But I’ve banged on about that enough and it won’t ever change until I, and my like, change it but we’re all too busy at work to instigate those changes…

And that’s about it, from my corner of Cancer World – the disease is slowly progressing; I’m mostly alright; and I’m still standing.