25 - 30 ...

No, I’m about not talking about a life sentence – to be honest, that might be a more palatable concept.  These are the survival after 5 years odds that the stem-cell transplant consultant shared with Mr. J and me on Tuesday morning.  Only 25-30% of people who go through this treatment programme survive for five years or more.  Shit.

Now, although I am one of the most positive, determined, focused and bloody-minded individuals you could ever meet, those numbers gave even me pause for thought (actually, let’s tell the truth here, they frightened the bejaysus out of me).  There was some shock, some tears and then thankfully, normality resumed with me arguing/challenging the worldwide held statistics developed by people who know far more than me about this stuff.  ;-)  

I argued that I am twenty years younger than the ‘average’ DLBCL sufferer, so gave myself another 10% on account of that; then I argued that the consultant had said the longer after initial remission, the better, so I gave myself another 10% on that basis.  So I’ve moved my likely numbers to 45-50% and I’m totally focused on being in that 45-50 (alright, alright 25-30%). This really is a battle and I’m currently being flanked on both sides, but I have a strategy … ish.  I have however, started my bucket list in earnest – well, one has to have a back-up plan.

In other news, since I last blogged, I’ve flipped between feeling like I’d been hit by a juggernaut and feeling surprisingly well.  I’ve had nasty blisters in my mouth and a peeling tongue (yes, there is such a thing and its bloody disgusting), I’ve had nausea, but haven’t actually thrown up (which I think is probably w'orse than actually chundering). But once those post-chemo three days were over, I’ve felt fantastic, have achieved loads, have caught up with people and with work and generally felt more like normal.  

Then, yesterday, the hospital rang me after I’d had my bloods done (twice a week, every week at the moment) to tell me that my potassium is low and that I need to eat bananas and drink OJ which was a reminder of how not normal things are and how deep into my day to day life the medics are at the moment…

 I’ve also had a radical restyle, which I love love love!  I feel like one of those models who roar into the camera with dramatic make-up and a curled upper lip….  Shame I don’t actually look like that, but heyho, perception is reality and all that. J

It should last about 2 weeks before it disappears down the plughole, but I’m going to enjoy it and wander round with a curled lip, giving it lots of ‘uh-huh-huh’.

Thank you very much (see what I did there?!?).

A.   xxx

RICE, RICE baby...

Well, where to start…  

This week so far has been a whirlwind of pic lines, tooth (or no tooth) dramas, RICE chemo, wee, cannulation, more chemo, more wee, no sleep, more chemo and then more wee. 

So first of all the pic line.  After googling excessively in advance (sometimes google is not your friend), I was very, very nervous about having it done, I mean how can a thing that goes into a vein in your arm and finishes near your heart not hurt for goodness sake?? Despite wanting to just run away from the whole situation, I turned up punctually at 9 on Monday morning (thank you Mr. J) and was seen straight away (more big ticks for the NHS).  The lovely lady I saw reassured me that I wouldn’t feel anything and thankfully she was right.   

There was a hiccup when the x-ray showed that the line was a little long and would ‘tickle my heart’, so needed to be shortened.  Now ‘tickle my heart’ might sound very sweet in some contexts, but apparently definitely not in this one, so back I went for it to be re-jigged, then back again to x-ray where it was confirmed that all was now well.  

For those of you who are a bit squeamish, I’ve included an image so you can suffer along with me.  You're welcome. ;-)

Next step was to go to Adelaide Ward to be admitted and this was where things started to look up – I had a private room!  Yay!  I had been really worried about being on an open ward as I just didn’t want to feel like I was surrounded by cancer sufferers.  I know that I am one, but in a private room you can close the door and pretend. The fact that you don’t have to listen to other people snoring, farting, belching and let’s be honest, talking, is also a bonus.

 

The first thing that happened was that I told the medical team that the hole where my tooth used to be ‘til the previous Tuesday was really, really painful and felt like it was getting worse rather than better. Cue minor panic.  I was summarily dispatched back to x-ray, so they could see what’s going on there, then back to the ward to have loads of bloods taken, then sent down to see Mac Vac (which sounds like some sort of special forces section, but is in fact the dental section) who pronounced that I was pre-infection – not good news.  The dentist recommended that I be given IV antibiotics and that chemo should be delayed for at least a day.

Pah!! said the Haematology team (after we’d walked about 5k from x-ray to the ward and back again!)  we won’t be held back by a paltry tooth (or lack thereof).  Well, clearly they didn’t say exactly that, but they did decide to ignore the dentist’s advice by changing the prescription to more monster antibiotics and by starting chemo anyway. 

Then it all got a bit dull - just lying in bed with chemo drugs, flushes and antibiotics streaming into me 24/7 for 36 hours and counting.  Hence the comment at the beginning about the copious weeing – I have genuinely not passed so much water since my marathon Vodka Lime & Soda drinking sessions in my younger days. ;-)

Oh there was one small bit of drama – one of the drugs being used in this chemo regimen is called Rituximab which can trigger a ‘reaction’ in some patients.  Reaction?!?  To me a reaction is a laugh, a snarl or a surprised face.  It is not a sudden sore throat that starts to close up scarily quickly (meaning I wheezed like a 60/day for 60 years smoker within minutes), and inner ears that start to feel very weird.  Very frightening, but as usual, so well managed by the wonder that is the NHS staff, that it was over in less than 15 mins.

This shit had better work.

Biopsy, schmiopsy...

Where to start?  It’s been a busy, intense and full-on few weeks since I last posted with my seismically huge, crap news.  As well as carrying on with work (I did just launch a new business in May - great timing huh?!?) there have been lots of ups, downs and middle of the road incidents since then, but the biopsy was probably the most interesting/entertaining.

Now, over the years, like many of you I’d imagine, I’ve heard about biopsies as being scary and upsetting experiences, so I was dreading mine.  Friday morning came round and I presented myself (along with the ever loyal and wonderful Mr. J) at the desk at 8.30, per my instructions.  The medical team came and fetched me fairly quickly and asked me to don one of their fabulously stylish robes – yes, the ones where your arse is hanging out for all and sundry to see.  Wonderful, I thought – the medical team and random passers by at x-ray are in for a treat now.  Not.  

Anyhoo, they confirmed all my details and then told me to relax while I waited.  Now, I’m not sure about you, but I found relaxing a little challenging in that context – and when I say challenging, I mean downright impossible!  Who the f’ing hell is going to relax when they’re about to have several small chunks of flesh removed from their body?  Thankfully, without too long a wait, I was wheeled in to see Mrs. Robertson, who was a thoroughly lovely, capable and confidence inspiring doctor.  We went through the required introductions, although I have to say they were a little stilted, given that I was lying on the gurney thingy with my arse in the air for all to see. The reason for which was, that they were taking the biopsy from my left buttock - obviously.  If you're wondering what the hell is going on here, I refer you back to my previous post about having cancer of the arse.

At this point I should point out that her assistant, a very young, handsome and erudite nurse called Tom, was also in the room.  He was an identikit for Phillip Winchester – those of you who watched the schmaltz that is Strike Back will know who he is, but for those who don’t, he looks like the image to the right.  Yes, really.  This is not an exaggeration for comedy purposes - he was the bloody image of him and even sounded like him!   Given that he was the one getting me in the right position, so therefore moving my exposed bum about, I wasn’t self-conscious at all.  Nope.  Not even one teeny little bit.  Gaaagghhhg!!!! :-(

As Dr. R gave me the local anaesthetic, telling me it would hurt a bit, she asked me what I do for a living.  Now as those of you who know me are aware, I work in the employee engagement/performance improvement world, and I’m very passionate about it.  Cue a fascinating conversation about engagement levels in the NHS for about 30 mins and suddenly it was all over and I’d felt hardly anything.  (Actually, I got a card for a potential future business opportunity once I’ve come through all this shit).  Apparently, you’re usually kept in for 4-6 hours after this type of biopsy, but I was feeling fine and was screamingly bored after about an hour, so asked if I could leave.  They assessed me and said that I was surprisingly ok, so said yes.

I was thrilled, because frankly, I had things to do.  Most immediately, a trip to B&Q - so off we went to immerse ourselves in DIY.  Well, the bedroom has to be sorted out before I get to the ‘not strong enough to even move off the bed’ post stem-cell transplant stage of this treatment - and the rooms not going to paint itself is it??  Later on that evening, I went out for dinner and giggles with some amazing, wonderful supportive girlfriends (you know who you are ladies!) and got home ‘quite late’.  

So, all in all, I think I can say I came through the biopsy bit fairly well.  One small part of the battle won.

Aideen 1 - 0 cancer

Addendum

Results of said biopsy have come through and they’ve confirmed the diagnosis of relapsed DLBCL, so chemo starts on Monday 17^th.  I need to be admitted for this chemo infusion apparently, as it’s so “potent”, so I’ve no doubt I’ll be regaling you with updates far more regularly once I’m on the ward.  There’s always rich content available while in hospital, so once again, buckle up – this could be a bumpy, but funny/interesting ride…

Aideen xxx