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.

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

All going well. So what's next??

Again, it's been a while since I've last posted and lots of exciting things have been happening.

Firstly, I went to Old Trafford with my niece & nephew.  Old Trafford!!  Crowds, steps, mayhem - something I never thought I'd be able to do or cope with again. Also, given the dismal performances Man United have put in this year I wasn't optimistic about having a 'great' day out, but apparently, miracles truly do happen - and I don't mean my recovery!  Ryan Giggs led us to a glorious (well alright, an average) victory against Norwich and the atmosphere was amazing, so all in all, a fantastic day.  Then, the following weekend, I visited lots of family in Ireland over Easter, which was lovely.  It was my first time going home since I became ill - again something I wasn't sure I'd do again, so all the more special because of that.

I also hosted a 'MacMillan Night In' a few weeks ago (the party person version of the MacMillan coffee morning), which went unbelievably well in terms of having a laugh with friends and fund-raising (over £400.00!!), but was a nightmare in other ways - dogs going mental at being locked away from everyone and new air conditioning unit flooding the bedroom while I partied on obliviously downstairs.  Nope, not joking - bedroom flooded - nightmare!  Thankfully I discovered it before it caused the ceiling to collapse on top of us, but it wasn't too late to make the room smell revolting.  There are no words for how nasty it smelt for the next few days - rancid, mouldy and rank are a few for starters...  The only way to get through that nonsense on the night was to pretend it wasn't happening and have fun.  Which we duly did.  The After Eight game will go down in history...well, local history anyway.  For legal reasons, I can't post any pictures of this outstanding event, but there are many (and one video Nikki Conlin ;-), and they are very funny.  For anyone who doesn't know the After Eight game, PM me and I'll fill you in.

Oh, and I've released my first movie since I last posted! Well, not quite, but I have put a compilation of videos that Kevin took charting my recovery on Youtube, which is sort of the same thing ;-) I've attached the link here if you'd like to watch it. Also, please feel free to share. My reason for doing this was that if it can inspire one person who is struggling through a horrible time to keep fighting, keep going, then it will be worth it. Frankly, it needs to do some good, because I look truly hideous in many parts of it!

https://www.youtube.com/watch?v=5Jqqr6nZJaE&feature=youtu.be

Life is pretty much returning to normal now, as I'm able to do almost everything I could before, albeit a little more slowly and carefully.  Because of that, I've decided to try to use my horrible experience constructively, and raise some more money - this time for Cancer Research.  So, I, who couldn't walk at all this time last year, am going to try to do a 5k walk at the end of July!

Now, knowing me as you all do by now, you're probably thinking that there must be wine involved somewhere along the line in my 5k, and you'd be right.  The walk will be late morning, followed by a celebratory lunch afterwards, which will hopefully include lots of bubbles and yummy vino.  I'm walking on Sunday 27th July and finishing up at The Baskerville in Shiplake.  Feel free to pop in and have a drink on the day if you're in the vicinity.  Also, and much more importantly, feel free to sponsor me at https://www.justgiving.com/aideen-jones1 

Right, off to do some training now.  The walking kind, not the wine kind. :-)

A. xxx

School holidays, pools and a bit of bouncing

After the realisation while on holiday that once in the water, I can do pretty much anything, my physio and I have now decamped to the pool for my sessions.  Walking up the steps with my gym bag was a surreal moment – I definitely never thought I’d be doing that again! And those of you who are sniggering and thinking appearances would suggest I didn’t do it do it often enough before I became ill are correct too. ;-)

I love the pool at Castle Royle.  It’s wonderfully underused (wonderful from my perspective - less so, I suspect from theirs), so I expected to find the usual serene, quiet pool when we arrived.  I had visions of having an almost private environment for my rehab, which would have been ideal.

Unfortunately, I hadn’t factored the Easter school holidays in to that vision...

What we actually walked into was very different. It was full of children. I mean, really full. There must have been about 40 of them all shrieking, screeching and squealing. The noise was deafening. I cannot comprehend how parents cope with that. Kudos to you if you do. All I can think is that you must need industrial strength ear plugs, medication and therapy on a regular basis.

It might as well have been Dante’s seventh circle of hell as far as I was concerned and I wanted to turn tail and abandon this clearly foolhardy plan until the Easter holidays finish.  My physio however, is made of stern stuff.  She grabbed my elbow and marched me towards the pool, while telling me to wave my walking stick around in an out of control/threatening type way.  It worked.  In no time at all, we had a section of the pool to ourselves with all children and parents giving the strange, stick wielding ladies a wide berth.  Excellent. 

The session though tough, was really good, although I’m not sure bouncing (yes, bouncing) two lengths of the pool has done anything for my personal credibility.  Aside from the obvious lady bits, there was far more of me bouncing than there should be.  I did feel for the poor child swimming past me underwater with goggles on.  He'll probably never be the same again...

Nevertheless, it’s all helping get me where I need to be.  And that’s what it’s all about.

A calendar year - but an eternity in my life...

A year ago, to the day, I woke up paralysed from the chest down, completely unable to move. Within six hours, my life and the life of those closest to me, had been turned upside down. A year. 365 days. 8,760 hours. A lifetime... Without a doubt, this has been the hardest thing I've ever had to cope with (and I've had some doozies in my time - some self-inflicted and some not). Having said that, I think I have been lucky. I know not many people would describe my current situation as 'lucky', but over the past year I've gradually started to believe the many medical people (and the nosey old bags I run into on the street and at Waitrose) who tell me I am. Had it not been for cancer twisting around my spine and paralysing me, I'd never have known I had it. I was already at Stage 4 - there's only one stage after that and it's not a happy thought. But it did and so I'm still here. Bonus. The amazing medical care I've received, my sheer bloodyminded determination and the support of my amazing family and friends has meant that I've made way more progress that could have ever been expected. The fact that I'm sunning it up in the Caribbean is testament to that. :-) This trip has been incredible. I was super nervous about coming - afraid that I wouldn't be able to enjoy it to the full. I have yet again surprised myself and it's been one momentous moment after another. I've always been a water baby and the idea of being so close to the sea and by the pool without being able to get in and enjoy them would have been heartbreaking. On day 1, I faced the challenge of getting into the pool. Would I a) go arse over tit and enter gracelessly or would I b) manage to get in the water with some dignity still intact? The answer was a resounding b). Would I be able to stay upright when my visual cues were compromised by the water? Again, a resounding yes! Woohoo! Once I was in there I had another amazing realisation. I could do virtually everything I was able to do before all this shit happened. I was able to walk freely, swim exactly as before and most amazing of all I could run and twist about. I had the best 30 mins ever! Then I was knackered and had to get out. My stamina has been shot to pieces, clearly. On day 2, we decided I was ready to hit the beach. Eek!! Would I be able to cope on the unstable sand? How would I cope with the sea if I tried to paddle? Again, would the swirling water mess up the visual cues my brain needs to help my legs work? The answer again, was I could manage both (albeit with a little wobble when the water started swirling round my feet). Cue amazing walks on the beach with the odd paddle thrown in. Bliss. Basically, as this holiday and time generally goes on, I'm realising that there isn't really much I can't do anymore - I just need to do it more slowly and carefully. Also, I'm still going through physio rehab, so who knows how far I'll get on my long road to recovery? All I need to keep that momentum up is a few more Caribbean holidays, or perhaps a pool at home. Now, where's Kevin disappeared to....? ;-)

Moving on...

Well, hello again.  I didn’t expect to be writing this blog anymore, but over the last few weeks, I’ve had several people tell me I should.  My initial reasoning behind the blog was twofold; one to help me externalise and cope with what I was going through and two, to potentially help anyone else going through something similar.  As I moved through the recovery process and started to regain some semblance of normality, to be honest, I needed the blog less.  However, it would appear with all the nagging, from Mr. J in particular, that I should keep going with it.  I’m not sure how interesting or funny it’ll be now that I don’t have any face down, arse up stories, but I’ll give it a go.

So, the last time I posted, I’d just been given the news that I was clear of the bastard cancer and was in remission.  Huge news.  Massive.  So I went out and got well and truly inebriated – getting out of the pub and home was fun that night.  Being drunk doesn’t work well with crutches and no natural balance!

Anyhoo, given what the cancer had done I was clearly still left with the whole walking challenge.  Not ideal.  I was making fantastic progress given my initial prognosis, but it was still too slow for me.  I kept expecting too much and then being disappointed and frustrated with the reality.

Also, the unrelenting ‘positivity’ I was maintaining was wearing.  Exhausting even. Every now and then I wanted to rant, shout and cry.  I've found that facebook helps me meet and suppress that need.  There’s nothing like a drunken rant on arsebook to remind you the morning after that although you may not be well, you can still make yourself look like a total twat with minimal effort. Particular thanks go to Gary Francis and the Sneddons for reminding me of that. ;-)  Salutary lesson, duly noted, but one which I’m sure I’ll completely ignore next time I overdo it on the sauvignon blanc or rioja.

What’s that? A funny story to keep the readers hooked you say? Ok, I can do that.  Going to the local pub last week for Sunday lunch, Kevin and I were stopped in our tracks by an elderly lady.  I bloody love the elderly – they have no respect for privacy or personal space…  “What’s happened to you? Knee replacement?” she shouted from about 100 yards away.  “No” I said more quietly.  “What then?” she shouted.  Right then you nosey old bag, I thought, so I let her have the whole horrible story.  “Well” she said.  “Aren’t you a lucky girl!” “Am I?” I said.  “Yes”,she said.  “Two years ago, my son’s wife was at work – very bright and successful, just like you (little bit of preening), when she suddenly felt a bit odd and couldn’t feel her fingers.  She was rushed into hospital, two weeks later…..huge pause….DEAD!!!!”  “Really?” I said.  “Well that’s a hugely helpful story, thank you for that”. WTF??

But actually, in a funny way, the old dear was right.  Although I have permanent damage and will never again do a jig or walk a marathon, (was I ever going to do that anyway?) I am still here.  If the cancer hadn’t done its worst on my spine, we’d never have known it was there, and I definitely wouldn’t be around now to regale you with funny tales. Scary stuff when you think of it like that.

And on that bombshell, goodbye for now.

A. xxx

Breaking news!

Apologies for not posting for so long, but I’ve been in a sort of limbo state since I finished chemo and didn’t want to tempt fate…  I had a PET scan a couple of weeks ago to see if the chemo has worked – being injected with radioactive fluid for the scan is most peculiar – and today I got the results.

I AM OFFICIALLY IN REMISSION!!!!

There is not a trace of the horrible shitty cancer left.  I could not be any happier than I am right now.  This leaves the way clear for me to continue to work my arse off on the whole walking again challenge without worrying about ongoing chemo or radiotherapy.  If I could do a happy dance, I would. ;-)

I’m over the moon and am highly likely to have several drinks this evening to celebrate.  You’re welcome to join me if you’d like to.  Row Barge from 6.00. J

Gambling, rehabbing and bar hopping!

Well, time continues to march on, as does my recovery.  Unfortunately, it feels like time is moving super quickly while my recovery does the feckin opposite!  Patience was never a strength of mine and I’m really struggling with the total inactivity that my current condition dictates.  Everyone around me tells me that I’m making fantastic progress – going to the pub on crutches instead of in a wheelchair was a big milestone (both for me and the landlords till!!)  I  know I am progressing, it just feels like it’s happening at a snails pace.  One of my rehab consultants suggested that I learn some formal relaxation techniques.  I can’t print what I said inside my head at that suggestion, as I’m sure the puritanical blogger.com admin people would auto delete the various swear words, but what came out was “Yeah, thanks for that – I don’t think that’s really me though”.  Which I thought was very well held.

The gradual transformation of Chez Jones into a well-equipped gym has continued with the arrival of my parallel bars.  I’m finding them really useful and have already noticed a difference in my ability to walk without holding on (I know, who’d have thought that’d be a big deal apart from on an especially large weekend!)  Mr. J (pictured right :-)) and a few of the other usual suspects have also

found them to be much fun, with various attempts at swinging, jumping and general silliness happening regularly.  It’s bound to end in tears – I can just see me being the one to dial 999 for someone lying prone on the dining room floor – oh, the irony….

 

Finally to the gambling.  I went to Ascot races last weekend and had a bloody brilliant time.  Lots of wine and lots of winning, which pretty much sums up how the races should be.  J  Mr. J, by the way, who bleats on about the correct way to gamble, the lineage of horses, blah, blah, blah, won nothing.  Just saying.

Onwards and upwards - with a little bit of sideways thrown in for good measure....

Crutches, steroids and sulking

Yay!  I’ve moved on from my rollator to crutches, which is fantastic.  Being on crutches is a huge step forward and makes me feel less like a pensioner and more like some young (ish) sports injury victim.  They allow me to move around more freely so I’m now going to be out and about more often.  J  I’m also back in the kitchen telling Kevin how to do various and sundry tasks, which he’s really enjoying.  He’s been excelling at all things domestic since the big C entered our world, the most recent activity being flower arranging.  Yes, you read that right.  Today, he arrived back from shopping with not one, not two, but three bunches of flowers all of which are now artfully arranged around the house.  Feel free to pop over, say hello and check them out...

The flowers do look beautiful and cheer me up no end.  I’ve needed cheering up recently as I’ve had major steroid comedowns and sulks going on.  The main reason being that for years, I’ve manfully attended Henley regatta and festival in all sorts of dull, grey, cloudy and sometimes downright torrential conditions.  The one year I’m out of action it’s bloody glorious for both of them.  Typical.  This wasn’t helped by facebook.  Virtually everyone I know felt the unresistable urge to share the wonderful time they were having with the world.  Yes, yes, I know,  stop whinging Aideen, you didn’t have to read it!  Although I was obviously thrilled for you all, I can’t say I’m sorry the Henley summer madness is over for the moment.  I can get on with recovering without feeling I’m missing out on the best regatta and festival ever.  Aaaaghhh……

Finally, I’m off for what should be my last chemo session next week.  I’m hoping that this time will be as amusing as the last when the most amazing elderly man was having a treatment the same day.  He was an awfully posh chap by the name of William, “but you my dahling may call me Bill”.  He was also blind.  He kept us all amused for the duration of the crappy chemo session by flirting outrageously with the nurses and regaling us with Tam o’  Shanter by the inimitable Robbie Burns which he was reading using Braille.  His friend was with him and when asked a question by one of the nurses, actually used the phrase ‘what, what, what?’ in a genuine, not taking the piss way.  Brilliant. I was in hysterics at and with the two of them for hours.   Bill was a shining example of someone who refuses point blank to let lifes challenges get him down.  An inspirational man.

News Flash!

Thanks so much for all the good wishes yesterday, you can now all uncross your various body parts.

After a nervewracking wait when I alternated between being ready to chew my own arm off with nerves or burst into tears at any second, we went in to see 'the man'.

And yay!!! The news was good!  Very good in fact :-) I'm responding really well to treatment and all is on track. Actually, it's better than on track - I've screeched into the lead in this battle. As planned and hoped, I'm kicking the proverbial arse out of the cancer.

They're really happy with me, but not as happy as I am with me. I'm off now for a cheeky vino to celebrate. Please feel free to join me virtually.

 


 

 

Conquering Everest and wet bums...

This weekend I slept in my own bed, with my husband, upstairs.  Yes, upstairs!

I conquered this personal Everest on Friday when my physio, the wonderful Carol, announced on her arrival that “the plan for today’s session is to get you up the stairs”.  I’d had no idea that she was so ambitious (for ambitious read deluded) and was duly terrified.

Never before have a set of stairs looked so daunting.  Standing at the bottom step was one of the scariest things I’ve ever done, but, I refuse to be beaten, so up I went.  And it was fine.  I wouldn’t say it was the smoothest stair climb I’ve ever done – it was slow, laborious and definitely not elegant, but I did it nonetheless.  Coming down is even less elegant, as I have to do it backwards at the moment, so whoever (usually the blessed Kevin) is behind me for safety gets a full-on view of my arse on the way down.  Isn’t he the lucky one!

He was excited about me being back upstairs at first, but then I started passing comment on the changes he’s made since I’d last been up there three months ago.  “Ooo, that looks nice”, “No, I don’t like that”, “That’ll need to be changed”.  I’m surprised he didn’t throw me back down the stairs straightaway. ;-)

Apart from that, the other big bit of news is that I had my ‘re-framing’ scan to assess the progress of the chemotherapy.  That was another experience I’ll happily forget.  I had to down half a litre of barium meal drink beforehand, which was vile!  It tasted like one of Macbeth’s witches had come up with a disgusting blend of vegetable oil, chalk, a token squeeze of orange juice and the odd bit of eye of newt and spleen of toad thrown in for good measure.  They also give you an injection of some weird stuff that dyes your blood so it shows up more clearly on the scan.  It’s heated in advance which they warned me would make it feel really weird, particularly around the bum area.  Apparently, there’s a large valve in each buttock where the blood pools?  Unsurprisingly, ‘they’ were right; it definitely did feel really weird - a bit like I'd wet myself actually.  Very disconcerting.

Anyway, it’s done now and I get the results on Monday afternoon.  Fingers, toes, legs and everything else crossed everyone …

Back home again...

I’ve been home now for over two weeks and it’s been fantastic.  Waking up in my own house, eating what I want for breakfast, lunch and dinner and generally being more in control of my life is a joy.  The woofers are also an absolute joy – making every day brighter with their unbridled enthusiasm for life.  We could learn a lot from dogs I think.

 I’m not sure whether it’s quite as ‘joyful’ for Kevin, who has to wait on me hand and foot.  He is running around like a proverbial blue arsed fly; cooking, working, shopping, laundering (clothes not money) and trying to keep me upbeat and positive whilst staying sane.  Bless him, for someone with the tolerance and patience of Victor Meldrew it’s a big ask.  He also has to get up most nights about four hours after he’s finally gone asleep to escort me to the loo.  I phone him from downstairs for this – he loves that!  He doesn’t need to actually do anything, just be there in case I look like falling over.  It’s a whole new experience for me.  For years, any risk of falling over in the loo at three in the morning would be because I was still partying – how life has changed.

Chemo continues to go well – well being a relative term I guess.  I now have the delights of injecting myself with a white blood cell booster for five days of the three week cycle.  I also have the joys (and associated downs) of being off my face on steroids for 5 days of the cycle.  I continue to shop like a demon on the steroid up days – it’s costing me a fortune!  Having said all that however, I’m still getting an easier ride than many people I’ve heard about/spoken to who are going through or have gone through chemotherapy, so I’m not going to complain.

On the mobility front, it’s still an uphill slog.  I have now though (drum roll please) moved off the zimmer frame and onto a ‘rollator’!  Picture below ;-)

Yes, ladies & gentlemen, I now have a cool vibrant purple old ladies gadget thingy with built in seat and everything.  I have foregone the shopping basket attachment though.   And yes, I do find it ridiculous and yes, I am embarrassed.  But, needs must as they say and however ridiculous it is for me to think of myself needing one of these, if it gets me to the next stage (crutches), then so be it.

Apparently there are lots of these about, so I’m considering launching some competitions to liven up my days.  Fastest in a drag race, tightest cornering, artistic impression - all other suggestions welcome.  Although, the mortification of losing to someone in their nineties would probably stay with me longer than I intend my disability to be hanging around.  I’m also unsure of what my physios would have to say about such reckless use of NHS equipment.  I suspect I’d get a good telling off.

Oh well, in for a penny as they say - I’m popping outside now to practice my cornering...