Scans, MC’ing and more blood...

I had yet another scan this week.  Same old same old you might think, but this scan mattered more than most.   Basically, the rest of my treatment plan depended on the result.  Assuming they saw what they needed to see, I’d be all systems go for the stem-cell transplant.  I need that to happen, because my medium-long term prognosis is pretty shit otherwise.

Like all other scans, tests and pokey proddy experiences, the worst part for me is waiting for the results.  Having said that, the feeling of having wet yourself when they inject the contrast dye during the scan is not one I can say I enjoy… 

Luckily, I had some distraction from my wait in the guise of the Big Quiz.

Cancer Research ran a ‘Big Quiz in November’ fundraising initiative last month and as soon as I saw it, I thought “that’s got my name written all over it.” I love a quiz, I love bossing people about and I love a night in the pub – so the Big Quiz would tick all those boxes very nicely thank you.  I duly contacted CathCath, our friendly landlady and suggested her pub would be an ideal venue: luckily she and our friendly landlord agreed.

So, Tuesday night arrived.  I’d had the all-clear to attend from the lovely nurses on West Ward at Royal Berks, so I got my make-up trowels out and started trying to make my face sufficiently visually pleasing that the no-hair situation would be somewhat mitigated. The results were passable, even if I do say so myself.  CathCath had decorated the pub with lots of Cancer Research balloons and banners and we had several confirmed teams, with some stragglers expected also, so all boded well for a successful evening.  

As quiz MC (I like to pretend I’m down with the kids…) it was my job to ask the questions, try to keep some sort of order over 40 odd people, most of whom were getting gradually pissed as the evening progressed and do the scoring.  Suffice to say, the first half went smoothly, the second was more challenging as the volume had increased exponentially with the booze! 

In the end, I think everyone had a good laugh and most importantly, we raised a fantastic £323.40! J  At my insistence, this has been topped up by a very contrite Mr. J, who went out for a boozy Christmas lunch with friends instead of taking me out to celebrate our 13^th wedding anniversary!  How very dare he!  Therefore, the final total raised is £450, which is a fantastic result and most importantly, is more money to help fund the people working so hard to find a cure for this bastard of a disease.  Thanks to all who came along and got pissed on a school night for a good cause. ;-)

The end of the week sees me back in West Ward for another transfusion – apparently the chemo is attacking my red blood cells as soon as they make an appearance, so I need a little help from my anonymous friends – thank you again to everyone who donates blood.  People like me would really struggle without you.

So, back to the scan.  I got the results yesterday and it’s GOOD NEWS!!!  They needed to see a minimum of 50% reduction in the cancer in order to put me forward for the stem-cell transplant and they got that – and more!  To say we’re delighted is an understatement – we’re bloody ecstatic!  

It’s going to be a tough and occasionally downright nasty road ahead for the next couple of months, but if it buys me a few more years to persecute Mr. J, then that’s all good. 

Whose blood is it anyway?

I was told late yesterday that I need to have a blood transfusion today.  Apparently, the blood oxygen level in the tests they took earlier today were low and to make sure I'll be ready for my stem cell harvest next Monday, I need to get oxygenated up.  This was communicated to me (through no fault of the individual) as a perfectly normal, day to day activity.  Whaaattt?!!??!  Not in my world. 

I proceeded to have a minor meltdown (i.e. tears) as, call me a bit sensitive, but the concept of having someone else’s blood flowing around my veins when I haven’t had a major road traffic accident or amputation of some sort, seemed a bit odd.  That’s not to say I’m not incredibly grateful to those who donate blood and make this possible, because I am.  It’s just that I feel like I’ve circled my wagons and it’s me against the cancer, except now it’s not just me – it’s someone else as well.  In a weird way it’s made me feel more vulnerable while at the same time giving me strength.  I’m sure I’ll adjust to it, but it’ll definitely take some time.

The reason for this low blood oxygen is that I’ve managed to contract an infection this week.  Despite avoiding pretty much everyone I know, some sneaky little infection managed to weasel its way into my system.  So that I can despise it properly, I like to picture it looking like the vile little fecker on the right/above/below (depending whether you’re reading this on your phone, tablet or pc). 

It’s amazing how much one little shitbag like that can wipe you out when your immune system is chemo-compromised.  Instead of battling through, as us females usually do - no man-flu here in normal circumstances! – I caved in like a big girl’s blouse.  Back came the star act ‘Lacerated Peeling Tongue’, but this time he/she had a couple of supporting acts, namely ‘Full-on Exhaustion’ and  ‘Boil on the Bum’.  Yes folks, the bum boil, that ultimate sign that you're run down or poorly, has made its debut into this particular cancer drama.  For fucks sake – like I didn’t have enough to cope with, I now need to undergo the indignity of sitting in a hot bath trying to ‘draw it out’.  YUCK! 

Thankfully, due to the wonder of modern medicine and penicillin (thank you Alexander Fleming) I’m now back on track to being my usual argumentative, stubborn and feisty self, so ‘Lacerated Peeling Tongue’ and ‘Full-on Exhaustion’ have moved on to their next venue, while ‘Boil on the bum’ although hanging round, is not being made to feel welcome, so is soon to move on too.

When I came out of hospital after RICE2, my second chemo infusion, Mr. J was out of the country (for work not pleasure, as he had to explain/justify to the medics :-)), so I had a team of superstars looking after me.  Thank you one and all for your amazing support – I absolutely couldn’t have made it through this week without you.  Please note, if you weren’t on that superstar team because you were poorly and therefore couldn’t do the shift I had allocated you, or just because it wasn’t your turn this time, that does not mean you’ve dodged a bullet; your number will come up  over the course of the next few months, it’s inevitable – a bit like death and taxes. 

Good things since I last blogged:

• Amazing family
• Amazing friends
• Woofer cuddles
• Homemade chicken soup
• Readymade frozen smoothies
• Mince pies
• Raspberry ripple icecream
• Online shopping (yes, yes, I know I said I wouldn’t, but there’s got to some upsides to this crap..) 

Apologies that this isn't the usual 'I'm breezing through this' style update, but this week, I've been forced to feel the pain of the chemo train, so in the interests of honesty & editorial integrity, I felt obliged to tell it like it is. 

Also, sharing the pain makes me feel better. ;-)

A.xxx

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

Waiting, waiting, waiting...

Well, after last weeks bombshell, everything appears to have ground to a super frustrating halt. Apparently, the next stage is a biopsy, so that the Haematology team can better understand the lymphoma (aka bastard cancer). They need to dot every i, cross every t, and identify exactly what it is.  How fast is it growing? Is it exactly the same version as last time?

According to the PET/CT scan, the lymphoma is currently showing in four places (which in theory is ‘good news’ in that it's fewer than the 7 places it was first time round!).  It's in both kidney’s, in the nerve at my L5 vertebrae and most weirdly, in my left buttock.  Yes, that really did say my left buttock.  Only I could get cancer of the arse.  I’ll just leave that one with you for a minute...

Anyhoo, given that the biopsy will be performed on the one showing in my butt, I suspect the whole process will be excruciatingly embarrassing and therefore highly entertaining.  I might even ask them if they can make any improvements while they’re there - a little lift maybe? 

The worst thing at the moment, aside from the fact that it's back, is the waiting - knowing it's growing inside me, every second, of every minute, of every hour … you get the picture.  Without being over dramatic, it feels like someone who wants to kill me is living inside me.  Think about every thriller/horror you’ve ever watched and how nervous you’ve felt when you realise the killer is already inside the house.  Now translate that to a vicious bastard being inside your body.  That’s where those of us with cancer are.

In the meantime, a variety - or should I say varietal? - of wines are helping me cope with the waiting.  A juicy Argentinian Malbec and a crisp NZ Marlborough Sauvignon Blanc are proving particularly reliable ;-) Once the treatment kicks in, they’ll be a thing of the past, so I’m enjoying them while I can.

Hi everyone, long time no write…  It’s been over two years since I last posted on this blog and to be completely honest, I was hoping never to post again. (nothing personal, I just didn’t feel the need to share my innermost soul, falling over incidents and toileting habits with the wider world once I was in remission).  Unfortunately, cancer, that sneaky, vile, bastard disease has crept up on me again, so my ‘Let battle commence: Round II’ blog is now officially up and running.  

After a merry go round of MRI and PET/CT scans over the last four weeks, my haematology consultant confirmed yesterday evening that I have Non-Hodgkin Diffuse B Lymphoma again.  We don’t know what stage yet, but he described it as “extensive” and “aggressive”.

To say that I'm devastated would be an understatement.  I am beyond devastated, but I’m fucking angry too.  And that anger is a good thing.  It’s what will fuel my fight, and I intend to fight like a warrior – and importantly, this time I’m going into the fight standing up! (not paralysed from the boobs down, which frankly, limits the ability to float like a butterfly and sting like a bee… )  I am not ready to shuffle off this mortal coil yet.  There are far too many things to do, places to see, people to meet, other people to annoy, dogs to cuddle and wine to be drunk  - and trust me, I intend to tick all those boxes before I go anywhere.

They tell me it’s going to take five months, during which time I’ll be filled with nasty chemo, will go through a stem cell transplant and may also need radiation therapy.  All of which will provide lots of fodder for witty blog updates, so buckle in - it's going to be a bumpy ride ….

A. xxx