Well, its been an up and downy three weeks since last Prof visit, which is becoming pretty much the norm for life. Lots of lovely things as I manage to see all sorts of fab people – Added Value bods, hockey girls, Catz chums, random mates – and do all sorts of nice stuff – See 'Oliver!' the musical, go out on the boat, go to France for a long weekend (and de-nude it of all shellfish especially my beloved Bulots – large snotty whelks), imbibe copious cocktails care of the Gaucho Grill, Bob Bob Ricard and 40th parties, do Sunday lunch (yum, Liz), go for walks and even do a spot of fitness…. not quite enough as ever to counter-balance the vast amount of social food going in the gob though. Oh yes, and work full time, not so easy in these tough economic times and pretty hard with MM as my constant shadow.<\/p>\n
And we're finally, finally!!! off to Jordan on Friday. Barring all being good with Prof this afternoon – the old 'pre-hols sign off'… Protein score was 3 on last visit and I've had various scary dreams about going in and finding its gone up and he's looking sorrowful with a skinful of new drugs to be taken…. but hopefully all will be well – and ideally it'll have dropped lower than 3. Will know in 5 hours time.<\/p>\n
And this is what it's like, living with this pig of a disease. Some hours when I almost manage to forget it and then I come back down to earth with an almighty crashing bump when I realise it's still there and get the terrors over what it's going to do to me. And the fear, god the bloody fear of what is still to come. Of course, hopefully all the nasty shit is way, way off, but realistically, and looking at the average time spans of when things start to go tits up again post Stem Cell Transplant, boy do I need to make the absolute very most of this year. The median remission period is two years – so some get more and some get less – and apparently among young people the disease very unfairly progresses faster than it does in older people.. cheers. And I'm only in partial remission, so god knows what that does to the average numbers, but I suspect not the best of things…<\/p>\n
Not that I need any reminding of this – its right at the forefront of my consciousness every waking moment I have. So every activity, whether its stroking the cats, going to Sainsburys, looking at the tree blossom or whatever, is tinged with a greater sense of appreciation and enjoyment as well as the fear of 'how long can I do this for?' It's an absolute and utter shitter… knowing that I will be lucky to live 5 more years and even luckier to make it to 10… it all feels terribly hard to believe looking at myself now and feeling pretty much as good as I ever will right now… and knowing that 99.9% inevitably it will all go oh so wrong at some point. <\/p>\n
There's nothing like reading the Myeloma info on the internet and discussions about palliative care, hospices, broken backs, failed kidneys, wheelchairs, power of attorney, feeding tubes and other things that feel like they could never possibly apply to you… and realising that they will. And not when I'm 80, but soon enough. So – hoping against all hope that I am one of the lucky very few, for whom this disease stays quiet … but knowing that the odds are a lot slimmer than I am, so only time will tell.<\/p>\n
Fuck, fuckedy, fuck. Try living with that in your head all day, every day. One positive step I've taken is to set up an Under 50's group on the Myeloma UK website – have a look at it (it'll come up on Google, then you use the drop down menu of Patient Resources and its under Discussion Groups). Thought it would be good to reach out to other 'youngies' as our issues are different (surviving for 3-4 years is reasonable if you get diagnosed at 75 but pretty shit when you're in your 30's..) More than 25 people have replied so far, spread as far as France, the Shetlands, Shropshire, Kent, Oxford etc – but all in the same crappy boat. A great chance to swop info and support other people who 'get it'.<\/p>\n
As one woman put it 'I find it so hard that my friends see me looking so well and assume that I'm cured, but I still have terminal cancer'.. and that's what it's like. Trying to make the absolute best and squeeze the brilliance out of every single moment, hour and day… while you bloody well can. At least I don't have young kids – many do - and one poor lady has just been diagniosed with MM when she went for her 14 week pregnancy scan.. Suckerama. It also makes me feel terrible that what happens to me will impact upon other people.. not that any of this is my fault but I still feel crap that cancer doesn't just dump on your own life, but those of your partner, family, friends…. Again – hopefully the bad stuff is still a little way off,but knowing you'll make others cry at some point is such a bloody shame too.<\/p>\n
One of my growing band of 'Myeloma Mates' – Neil – is due to go in for his donor transplant soon. He's 41, so feels like a version of me, but who's had MM for a few more years and is ahead on the treatment path. It involves 3.5 weeks in Kings Hospital (a shithole, thats hard to get to) as Parkside don't do donor transplants. And a year of fear afterwards in case he gets GVHD (Graft Vs Host Disease) – ie his body organs reject the donor stem cells. And its not like you can just take them out, like a new heart or lungs.. once they're in, you're kind of either semi-saved or totally fucked. He has a 1 in 3 chance of dying within a year post-transplant, which isn't a great scenario at 41. But a 2 in 3 chance of buying himself a few more years, so there's no real option but to go ahead and give it your best. Imagine yourself having to make that choice…… yep, its terrifying. Truly terrifying. Not like when you say 'I'm starving' before lunch when you're really just a bit hungry. Literally taking your life in your hands and hoping you can keep it… jesus. It's on the horizon for me too at some point – so again, here's hoping to god that these days last as long as they can do.<\/p>\n
So – on we go with hopeful plans to go to Jordan this week, the US in July, Sri Lanka in September and very hopefully Cambodia \/ Laos early next year…. get it in while we can. And boy do I hope I look back on this post in 10 years time going, gosh I was a bit pessimistic wasn't I, great how things have turned out. That would be one time I'd SO love to be proven wrong!!!<\/p>\n
Hope this post hasn't freaked you out, but it goes some way to explaining what it's like living with this and what's likely to happen going forward. Onwards and upwards, Sx<\/p>\n","protected":false},"excerpt":{"rendered":"
Well, its been an up and downy three weeks since last Prof visit, which is becoming pretty much the norm for life. Lots of lovely things as I manage to see all sorts of fab people – Added Value bods, hockey girls, Catz chums, random mates – and do all sorts of nice stuff – […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"nf_dc_page":"","om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-1460","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"yoast_head":"\n