Feeling Better Every Day

Hey Campers,

Greetings from Stroud Road, a whole 2 weeks since being released from Parkside (or the 'Dark Side') as I heard a nurse from a rival hospital call it yeterday, nice…

Things going well here – I feel much better and people dropping in seem to think I look a whole lot better too – less puffy, more with it and definitely very bald. If you want to see my head, just ask, I'm not shy…it's funny how many of you look mesmerised by it and eventually ask (with the caffeine bravado of cup of tea number two) if you can see my head without a buff/hat on it! Yes, its all stubbly, no – I don't think my hair's growing back at all yet, yes – it will grow back its natural colour (brown? dark blonde? grey? white?!) and as I've not seen the natural colour for 20 years, who knows what it will be) and apparently it'll also be curly (joy!). Old Lady Pube-Head here I come.

So – what's been going on? Well, most a shedload of sleeping – every time a visitor pops in I get all perky, have a nice chat, eat their brownies (very good, Moonie's son Jamie)… then conk out for a sleep. Which I have masterfully managed to extend from 20 minute catnaps into whole 5 hour snoozing marathons. I have even been known to miss a meal as a result, most unlike me… Fortunately I can now eat crisps (my love and joy) to plug any gaps… in my thighs…

On the health front, Prof is pleased with progress – keeps hitting me with the superlatives of 'you look stunning…really good…way ahead of the expected recovery rate') – all of which sends me into a total blue funk every time he speaks, as I'm sure (in a very fearful, protective of myself kind of way) that he's either hiding something, or knows that he needs to boost my mood now because he has something truly shit round the corner for me.

He actually suggested we start thinking about a holiday in 4-6 weeks time (i.e. end March,bloody miracle that he brings up the subject when it's always been me to date asking in vain) and when I said we were thinking of going away for a week in May, he seemed to think that we too far off timewise. So not surprising that my brain starts going into overdrive with 'why is it too far off? what does he know that he hasn't told me? is there something else he's going to spring on me, like a donor transplant in a few months, once he's lulled me into a false sense of security with the holiday??' I've had so much shit thrown at me in the last 5 months that I can't believe it actually might stop for a while.

And I don't really know yet how the transplant has gone really. My paraprotein score was 6 when I went in, and the first reading post-transplant is 5. Good in some ways, as I was starting to imagine it might be 15 or 20 and shooting up, but also not brilliant as its not dropped to zero (total remission). Anything around 5 is I think seen as a PR (partial remission) response. Not a disaster as if it stays stable at this level, then the disease can be seen as being 'switched off' as Prof calls it – not active, not multiplying and not high enough a score to be causing any damage. So this is the ideal – that it stays at 5 for as long as humanly possible. Two years remission is apparently the median after a SCT, although I don't know if this is for everyone or for those who get a better response than 5. I think everyone. So in a good case scenario, I could have 2 years of pretty much normal life, with say monthly visits to the hospital to check the paraprotein and do the weird things they need doing, e.g. a pentamadine inhalation each month (sucking on a face mask with some dissolvable thingy in it). Got one on Monday. Not painful or diffcult just odd as they stick you in a room on your own so you focus on what you're doing, just a bit dull really.

I need to ask him a bit more about the coming months when see Prof again on Mon 16th - managed to cry through most of the last appointment this week, so will try and keep it together next Mon (though can see myself melting again quite easily… god the fear that this puts in you can do very odd things to your emotions, when I detatch from 'having myeloma' and hospital visits are just things that need to be done in a week, then its fine – as soon as I engage my brain and think about what it means, and why I have to go to these appointments, I tend to fall apart…it's a right bugger).

Beyond all this – H had an operation on his left foot yesterday – so is now hobbling round the house with a sexy blue club foot boot on. He had a Morton's Neuroma – big pain between third and fourth toes on the underside of his foot. Various of you seem to have similar symptoms which is quite amusing… including Jo Close who is off to climb Kilimanjaro this summer (you might want to get your toes sorted before you yomp up there). Yes, it is something to do with having played lots sfport, jamming your foot endlessly up at the end of your sports shoes… and being over forty. Just a day procedure, was most odd him being in the bed at the New Vic hospital yesterday, and not me!

And I went out for the first time in a month this week – just to Slumdog Millionnaire, but still it was a night out. I carefully picked a showing when very few people had booked in, to make sure not subjected to lots fo germs… then realised it was Orange Wedneday when we got there, place was bloody heaving with grubby youth enjoying two for one tickets. Still, am sure the bodyweight of popcorn I ate kept all viruses firmly at bay… Am not meant to go out in crowds for 3 months, nor to eat out at restaurants for 6 months (what?! I should coco) so will be watching my neutrophils score particularly carefully – as soon as its half decent, regular social life will be resumed…. including al-co-hol… currently don't fancy it, but surely that can't last too long (can it??! shocker.. what a cheap date I will be.)

Kittens have also been spayed – they got my wig out of its bag and dragged it to their food bowl in the kitchen, little sods – so in revenge I booked them in for the Big Snip. They seem fine and will finally be allowed out in about 10 days time, so be very afraid all pigeons, mice etc…. Conker already makes a great Hannibal Lecter slurping and sucking noise when gazing out the window at the birds in the tree outside…. Lock up your small children, furry killers soon to be on the loose.

And here's to some romance-filled Valentines love-ins this weekend, may your king prawns be juicy, steaks be medium rare and your table not too close to the next one (you know, where the couple has nothing left to say to each other) and may your crumble and custard be fully warm with a proper crunchy topping.. 

With love from the Bald Bird and the Toe Throbber of Wimbledon Park x