Still raging...

Do not go gentle into that good night.
Rage, rage against the dying of the light.

Dylan Thomas

Well, as some of you were aware, today was my d-day.  Earlier this morning I saw my haematology consultant to get the results of the scan which would tell me whether the seemingly never-ending, brutal treatment programme I've been going through since last October has worked or not.

And the good news is, it has. I AM IN REMISSION!!! :-) :-) :-)

So, cancer has been sent packing again and hopefully this time, despite statistics that warn me otherwise, it'll get the message once and for all.  Just in case though, Kevin & I will be getting on with my bucket list, starting with our trip to California later this year, then there's a plane to be jumped out of, highest/fastest zip wires to whiz along, wonderful wines to be tasted, friends & places to be visited and many, many other amazing experiences to be lived, loved and embraced. Carpe Diem.

Lots of love from a very, very happy me.

xxx

Back in the land of the living…ish

Well, it’s been a while folks, but to be honest, the last couple of months have been the toughest I’ve ever had to cope with – and updating the blog was way down my list of priorities.  When the lovely people at Royal Berks told me the stem-cell transplant treatment was tough, they weren’t joking.  Although in reality, it’s the high-dose chemo you receive immediately before the transplant that causes the problems - as I said in my last update, it felt more nuclear-dose than high-dose.  Suffice to say, I never, never, never want to have to go through that again.

Anyway, although I do still have to go through a series of radiotherapy, I feel like I’m now on the mend.  This means I’ve now got a semi-reasonable level of immunity (enough to see people and get out and about) and am very slowly regaining my strength.  Along with that, my desire to return to some semblance of normality i.e. leave the house occasionally and get back to doing some work has kicked in big-time.  I've never been famous for my patience! I drove myself to the shop and back for the first time last week, have started going on short dog walks with Kevin and the hounds and even went out for a birthday meal on Saturday night (a friends, not mine – that party will be in June!).   

My taste buds have started to come back as well which is fab – being able to actually taste what I’m eating feels like such a bonus!  And thank the Lord, after pouring a glass and tasting it with much trepidation, I'm delighted to confirm that I do still love wine!!  So, I have also been enjoying the odd little tipple of a lovely NZ Marlborough Sauvignon Blanc I found… ;-)

The only downside of all of this activity is that whenever I actually do any of these things, I need to ‘have a little rest’ afterwards, which makes me feel bloody ancient.  I mean, I know I’m getting on, but this is ridiculous!  I’m hoping that this requirement for ‘rest’ will reduce as time goes on – after all, Spring has now well and truly sprung, which means we’re approaching silly season in the Henley neck of the woods and I’ll need to be fully recovered to cope with that…

Home from home. Not.

Sorry to be a bit late on parade with the blog, but to be honest, I’ve been totally wiped out by the ‘high dose chemo’ they’ve been filling me with since I arrived on Thursday.  Did I say high dose?!?!  Nuclear dose more like – I hardly knew what my name was the first few days. Chemo is well known for making one feel a little distracted, but I genuinely can't maintain focus for more than a few seconds at a time.  And as for putting together a coherent sentence, forget it. I hope the stem-cell transplant manages to reverse all this forgetfulness, because otherwise I’m going to spend the rest of my life not having a clue what’s going on.  No change there then, I hear some of you say...

Consistent sleep feels like a distant memory, as I’m woken regularly for Obs checks, chemo bag changes, room cleans, lunch (which I don’t want), tea (which I don’t want) and dinner (which I don’t want).  I am currently surviving on tuna melts from the coffee shop and fruit.  They weren’t joking when they said I’d lose weight in here, I just don’t think it’ll be for the reasons they had in mind.  I seem to have finally managed a good sleep last night though, so hopefully, I’ll be able to maintain my train of thought long enough to get this posted. ;-)

I am in a ward called Adelaide, which is politely called a chemo ward a.k.a., cancer ward.  I have a room to myself which as I’m likely to be here for a month or more, I have decorated with a few bits from home.  Having said that, they’re mainly pictures that make me cry every time I look at them, so I’m not sure they’re achieving their primary objective of making me feeling better to be honest.  Perhaps I should rethink that particular bit of home from home dressing…

Yet again I am bowled away by the amazing NHS staff – particularly the nurses.  They are nothing short of amazing.  Adelaide has had a bit of an issue with heating over the last few days.  It’s basically been like a bloody oven, averaging about 26-28C.  This has been hideous for patients, particularly those of us ladies of a certain age and for visitors, as Mr. J. bemoaned loud and long on each visit.  The nurses however have kept going throughout.  Working a 12 hour shift in those conditions while staying focused and keeping a smile on your face takes some doing, so if I had a hat on, I’d take it off to them.  Another reminder why we must fight so hard to protect and retain the wonderful, wonderful NHS.  (I’m not sure we need to fight to keep the engineers who messed up the heating though – they can sod off to be honest).

Right, I can feel my brain starting to go on a meander now, so I’ll sign off and see where it takes me.  Who knows where I’ll end up – if you see someone walking along the London Road or through the Oracle in pink checked jammies and a Race for Life t-shirt can you please return me to the Royal Berks?  They’ll know where to put me…

xxx

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.