So Much in Just A Few Days

Cor, where to start with it all?

Maybe with the one little bit of good news – my PP score has dropped from 6 to 4 from the first cycle of chemo treatment. Which, ordinarily, would have me jumping for joy, but its become so much less the point of focus that it was kind of a polite 'oh that's good isn't it Hawksey? Yes, good… mm, yup good' moment instead, as we sat in front of Prof and Linda, with the far bigger question of 'am I screwed or not' really on our lips. Well it is good and quite a quick drop too, so we will see what chemo round 2 delivers – maybe I will only need 3-4 cycles in total which is always better than more.

Did also manage a very nice cup of tea with Ellie from Added Value (just been given the all clear from Non-Hodgkins Lymphoma) which is totally marvellous, plus also heard that another very much loved friend has been given the all clear from breast cancer this week – two cases of entirely lovely, utterly deserving people who matter to us, hearing the much wished for words that absolutely matter to them. I couldn't be any happier to hear it and was so totally chuffed for both prof them – but you can imagine it is also just that little bit hard when, terribly selfishly I know, I will never be told those words plus, as you know, things are pretty rough in our house right now. Makes you feel a cow for even letting a thought like that into your head, but I just couldn't help it for a brief, little moment. I am still entirely 'made up' as they say up north, that all will be well in their worlds, for now and every more, with luck.

And I think I'll focus on today for the rest of this post – Friday 4th March (ok, technically its the 5th now as its 5am and I am squirrelled away in the office, gagging for a cup of tea but Cathy arrived from Holland last night and got last dibs on the overnight accommodation straw pulling – the lounge sofa, so I can't creep down there quite yet.

So I had the should biopsy today. H dropped me at PS at 6.45am (nice) and I didn't go to surgery till 11am – very thirsty and cracked lips by then – how can I own at least 20 lip slaves but there was;t one in my wash bag, pockets or main bag when I went a-hunting? Luckily Claire appeared with Daily Telegraph, Jelly Babies, lemon drinks, chicken wraps and yes, a lip salve, so all was not lost. I just had to wait till post-op for most of the goodies as a GA is always nil by mouth..

Op went fine, felt the usual woozy/drop off half way through a sentence as you do, for a while, then Charlotte Rayner the chest lady dropped by to reconfirm that I have the final (hideous sounding) procedure to undergo next Wed at St Anthony's in Cheam. This is a 'right heart catheterisation' – which seems to involve threading a needle through my neck and down into my lungs and heart while doing some kind of pressure testing en route. Sadly, only light local anaesthetic, so I have visions already of this being as tear-jerking and painful as the angiogram was – which now I think about it, was in the same bloody hospital. Note to self – tell them immediately that last time I was given double the local anaesthetic dose and it wasn't even close to being enough – and now I am about 5kg bigger.

She also seems to be still on track with pulmonary hypertension as the working diagnosis, which, if you look it up, is not exactly great news. In a nutshell, it is not curable (how in God's name does ever bloody thing that I might have, not be able to be got rid of??) and in it's 'not curable-ness'' is also degenerative and tends to end in reduced quality of life due to decreasing capability to perform actions and ultimately heart failure and death – or the need for a heart/lung transplant, well isn't that just sodding peachy. Yes, it does depend when they 'catch it' (but a year down the track may not be in the 'early' box for this) and there are some tablets etc but those are not without difficulties either – blood thinners so you forever have to be worried about getting even a simple cut. Plus you can't travel to anywhere at altitude, which now, seems such a long way off in terms of probability that it's not massively worrying, but it is another stab in the guts in terms of 'your life as you know it, is over, and possibly just… over'.

So I'm kind of hoping that Prof Madden will decide it can't be Pul Hyper and maybe it could still be something simpler and more manageable – maybe even curable – here is, as ever, hoping…

And today's shoulder biopsy results may also not be back till more like Wed/Thurs next week, which does make it a bit of a Mega Week possibly in terms of what we will, or won't hear. Like the worst case of exam results nerves, and even then you're generally pretty sure you'll get most of what you're hoping for, while in this case I haven;t got a Scooby.

Anyway, just after her drop in, Mr H appeared from his Board meeting and the 'shift swap' went ahead – with me then being quite quickly released in my sexy navy sling to go home. It was too hard to work out how to put on a bra with a sling (too many straps!) so it was a commando return to 54 Stroud – get me and my thickened ankles, what a looker.

H knocked up some sausages and mash for dinner as Cathy can't buy good sausages in Holland (the food there honestly is really quite crap, sorry but it is!) The Dutch don't do parsnips as Xmas either, weirdos.) And it was an early night but as usual a very sleepless one. 

Right 6am now – Is that too early to get the kettle on? Maybe I can pretend I heard Scrump whining for her morning wee, and use her as the excuse (rather like a certain husband does when a bad smell suddenly emanates round the lounge at night…). I'm off to give it a go.

Happy weekends wonderful people – I shall be watching my last Aces match complete with fold-down sad chair and giant umbrella. And of course my sling to get max sympathy, although oddly, it actually doesn't hurt very much at all – yet!

Then doing very little for rest of weekend. Apart from rejigging all the chemo dates as it was decided that the risk of infection from the op would increase too much from the chemo (which decreases your immune system) so the first session of Cycle 2 is now Monday. 

Can't wait, phlurrgh.

Adios peeps.

S x