<\/p>\n
You might need a cup of tea for this one…<\/p>\n
It night be the change on the weather or the fact that medical, things are hotting up but I can;t help but reflect at the moment that this has been a really hard, crap year.<\/p>\n
There is no real life or normality to be had when you're having to go to hospital up to 5 days each and every week. Spending time on wards, in chairs, in hospital beds, with nurses, drinking too much tea, waiting for procedures, being stabbed with endless needles, reading BBC news that you already know, having blood taken, peeing in jugs, picking cotton wool pads off used veins, being covered in bruises from injections, the constant tiredness and endlessness of it all.<\/p>\n
It's now been 2 years that I've had breathing problems, still unbelievably undiagnosed and making life more than difficult. You can't get away from breathing, I'm aware literally with every breath I take that this is no better and at times, scary. It bloody well sucks. Even bending down to put my shoes on means I lose breath, I hate being constantly reminded that my body is failing me.<\/p>\n
Then there's the 2 years of miserable grinding lower back pain – had a lumbar discography this week (mm that hurt) and 1 of the 3 tested vertebrae has been identified as 'significantly troublesome'. So am now waiting to get appointment with the Parkside back bloke to discuss next steps, possibly rods in my back, but it has a very average success rate so not sure yet if something can actually be done. But I was sort of pleased that something was identified, at least there is still a little chance the back pain may be helpable.<\/p>\n
Oh and just the 9 months of relentless bloody chemo, week in week out, endless cycles of different drugs, now heading to a close by Christmas as my stem cell transplant is lined up for 18 Jan 2017.<\/p>\n
All this just sucks your life away, when all I am trying to do is to live mine. And prolong it. But there's a certain quality of life that tips the balance and this year has been on the brink of it. Yes I try bloody hard to keep things normal. The easiest and best for me are lunches or nights out, when I can sit down (no back pain), chat (good adrenaline and endorphins) and drink (general helping numbing of useless, painful body).<\/p>\n
But it's been sodding hard. I haven't felt 'right' for so long and its very isolating feeling and being 'different' when all anyone would ever want is to just be normal. My legs are wobbly and often don't feel like they quite belong to me. And I'm the size of a house – tried buying a Barbour this week for H to give me for Christmas and just could;t get into the ones in the shop – no dry dog walking for me then hey.<\/p>\n
All this then coupled with the 6 bloody months our builders have now been here, when it should have been an 11 week job. No sofas (under dusty sheets), no TV (unplugged), no kitchen or ability to cook anything (filthy), no spare bed (room piled with boxes), no privacy (men in 6 days a week from 7.15am), no peace and quiet (drilling, banging, Polish radio till 6pm) – they've been a disaster and we are desperately trying to get them to finish most of the jobs in the next 2-3 weeks. We just need our house back and to have somewhere clean and quiet to relax – and socialise, as that's been a non-starter since the summer, poo!<\/p>\n
And now the pre-transplant tests and procedures have started. The SCT is just under 2 months away but I'm already into:<\/p>\n
A MUGA test for my heart<\/p>\n
GFR test for kidneys<\/p>\n
PET CT scan for god knows what<\/p>\n
Meeting with the consultant who will do my stem cell harvest<\/p>\n
Bone marrow biopsy (under sedation, this time, no way am I ever going through the corkscrew in the back scream the ward down agony of that again)<\/p>\n
Discussions with Prof about learnings from SCT1 and how we try and avoid things like my terrible mouth ulcers this time round<\/p>\n
The stem cell 'harvest' (what a euphemism) 3 days are booked in for 3, 4 and 5 Jan, what a nice start to the year.. Oh and the 'cell mega producing' injections are due right over New Year, lucky me and Mr H, I remember the fun of him injecting me in the butt each night before my first transplant, while I tried to crawl over the arm of the sofa to get away from the stinging pain…<\/p>\n
God I long for the normality of life. Looking for work. Doing workshops and meetings. But way above that, being able to move freely and without pain, now that would be truly extraordinary, like recovering from the worst hangover ever end feeling 'like you' again. Oh I wish……<\/p>\n
And beyond that – being able to plan for a future. Poor H is so desperate to think about our 50s and beyond, but we just can't. As ever it's a case of seeing how the transplant goes. Do I get through it in the first place. Are there any unexpected emergencies. Does it put me in remission. How well do I recover. What are all my scores. How do I respond to being on maintenance, the planned monthly dose of Dara on an ongoing basis. Does the transplant somehow improve my breathing issues. Do I go on to have the back procedure as there's no time now pre-transplant. Basically, how much of my old life can I get back – and if I somehow magically do, then how long will it last for this time?<\/p>\n
Jesus it's a mind fuck. I've been so incredibly patient for what is basically two years of shit now. But I really need an upside and some stuff to go right. The SCT is the start of the process so we will see by March\/April next year how things are looking. Yes, that's almost another 6 months of just waiting and seeing, welcome to my shitty slow-moving 'wait and see' world….<\/p>\n
In the meantime, obviously no holiday planning as we just don't know what lies ahead. But I've got a couple of one-nighters in nice hotels – Chewton Glen, the Zetter Townhouse – before Jan, to try and throw a bit of sunshine in along the way.<\/p>\n
Just desperately hoping that I can get my life back at some point next year. I've bloody missed it, every minute of every day.<\/p>\n
Start getting those fingers crossed folks, the SCT has a lot of pressure eon it to deliver some sort of 'old life' back to me – and I need all the help I can get x<\/p>\n","protected":false},"excerpt":{"rendered":"
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