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....? ;-)