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...

 

Chintz, cannulas and hot milk...

Well, where to begin.  I guess with an apology for the delay in posting.  I know it’s hard to believe, but I have just been so busy that it’s been difficult to find the time to blog.  Honestly, the days just fly by! Up, shower, physio, work, lunch, visitors, more physio, more visitors, dinner, chill then sleep.  It’s exhausting!

So, back to the beginning of my stay here at Lynden Hill.  Leaving Royal Berks was a real emotional wrench in the end.  I think I’d become almost institutionalised during the time I was there.  I also felt very safe in that I hadn’t been forced to confront the level of my disability outside the context of the hospital, so doing that in a taxi on my own whilst strapped into a wheelchair was tough.  Cue lots of tears and drama, but I got through it.

Lynden Hill was an entirely different kettle of fish to the hospital.  The first hurdle was getting over the fact that I was surrounded by chintz and very grand people who were 40 years plus older than me.  I’m not joking, every other fecker here is really, really posh and really, really old – for those readers in Henley, think Phyllis Court for the infirm. (thank you Crystal).  The highlights of the day are lunch with other oldies, afternoon tea in the drawing room, a turn around the garden and their evening cocoa.  I do have to admit that I’ve been seduced by the evening hot drink and have started to enjoy a hot milk most evenings with my book ;-)  I know, I know, I need to get out of here very soon…  Now I’m sure they’re all lovely, and I have nothing against posh elderly people, it’s just that I feel I need more positive, upbeat energy around me to help drive my recovery forward. 

Posh oldies are not doing that.  The physiotherapy they provide here however, is.

My progress has been nothing short of amazing!  Mainly due to the fact that the neuro physio here is a sadist.  No really, she is.  A lovely one, but a sadist nonetheless.  She had me standing up on day 2 here, on a normal exercise bike by day 5, working on my abs and core every day (I didn’t know I still had core muscles buried inside me ‘til now) and attempting to kick a football back to her by day 8!  Kick a football for God’s sake – I can barely support myself in a stand without toppling over.  I’d like it noted that the potential inability to support myself has nothing to do with vena bena, as I’ve knocked that on the head while I’m here.  The therapy is just too demanding to risk anything affecting my balance or awareness – which I suppose is a good thing.  I’d love a nice Marlborough sauvignon blanc right about now though….

The other highlight since I last updated feckmindedness is that I’ve had my third batch of chemo.  Yay, that’s halfway through!!!  It went well once they’d found a vein to cannulate – it took a while i.e. 3 hours!  Lots of prodding about, poking and pain (insert prick jokes here) or as the lying nurses say "sharp scratches".  Sharp scratch my arse - it was bloody agony as they gouged around trying to get one of my "narrow, deeply set veins" to co-operate.  Once they got the cannula in though, it went smoothly, so fingers crossed the good guys are beating the shit out of the bad guys inside me as we speak.  I need it to work if I’m going to get back on my feet again.

That’s all for now.  I’ll post again once I’m home in 4 DAYS!!!  I’m excited, nervous, intimidated and optimistic all at the same time.  I’m sure the sumptuous meal and gorgeous bottle of vino Mr. J. has planned for my homecoming will help to deal with any wobbles (whether they be emotional or physical) I might have …

Out, but not out out...

I’m leaving hospital on Thursday.  To quote Micky Flanagan, I’m getting out, but not out out.  I’m going to a neurological physiotherapy rehabilitation clinic called Lynden Hill, which coincidentally is less than 2 miles from home.  Bonus (especially for Kevin).  I’m excited and scared in equal measure.  Excited because they have a great reputation for helping people achieve more mobility and because I’ll be given the chance to work really hard on my rehabilitation (2 x 45 min sessions every day plus additional therapy like hydro, occupational etc. – I’ll be knackered!).  Scared because although I clearly don’t want to stay in hospital, it’s become a bit of a safety net for me after nearly two months here.  The people have been fantastic and I’ve learnt to come to terms with my current condition within the safe confines of the Kennet ward.  It’ll be scary to see how that translates to a new environment.  Anyway, deep breath, onwards and upwards, things can only get better as they say.  They being D:Ream, which means it must be true, Prof. Brian Cox is too clever to have been wrong, surely?

Positives since I’ve last blogged are many…   I’ve made good, solid progress on my walking.  The distance I can cover has increased and I’ve learned to do 360° turns in both directions on my frame.  (Stop chuckling at the image of me on a Zimmer because I know you are….)  No biggie I hear you say - is that it?  Well, when you’re me right now, a 360° turn is the equivalent of beating Usain Bolt in the 100 metres.

Another positive , with apologies to non-football fans, is United winning the league (yay!!) and Man City losing the FA Cup and winning nothing (yay again!).  That cheered me up no end.  Sir Alex leaving is a massive loss, but one that I think we can survive, albeit with some pain in the transition years.  I didn’t think it would, but football still has the ability to move me despite all I’ve been and am going through.  That in itself was a relief.  It’s reassuring that my illness and my current condition haven't become all consuming.

Another positive ish is my hair.  It's behaving quite oddly, in that it's stopped falling out halfway through, so I’m now stuck with the surprised baby/Tintin look.  It's making me wonder why  I can’t do anything normally?  Even the version of lymphoma I’ve got is one that’s most commonly found in men over 65, not women in their 40's!    I'm now torn between wearing Penny or not, so have opted instead for a temporary solution, namely an 'exotic' fortune teller type headscarf.  I’m hoping that once The Great Gatsby is released, everyone will think I’m bang on trend and fashion forward.  At least that’s the plan…

Finally I must tell you about a fellow inmate here, whose name I will change out of respect for her privacy.  I’m going to call her Beryl.  Beryl is an interesting character, who used to be a strong, successful, independent, multi-lingual lady, but who now unfortunately suffers from dementia.  She marches up and down the ward constantly, ensuring everyone is on high alert as to whether she’s in a good mood or a bad one.  She’s physically now fit and well and keeps us both entertained and on our toes.  (Clearly in my case that’s a figure of speech)  Conversations with her are like talking to Eddy Izzard during one of his stand-up shows.  Genius.  The one below is one of many.  She came to see me in my room for a chat when Kevin was there.  Her nurse Natalie was with her.

A:  Hi Beryl, how are you today?

B: They’re very heavy aren’t they? (Looking at Kevin and miming something that looks like she’s holding a pair of melons/oranges or something along those lines!?!?)  And they won’t fit in here. (pointing to door frame)

K: Oh, won’t they? Why not?

B: Yes. I left them upstairs.

A: Left who upstairs?

B: The children

K: What?

B: I don’t know what’s happened to them now. The Grange.

K: Rabbits

A: (dirty look to Kevin) What’s The Grange Beryl?  Is it a place?

B: Ooo, yes. 

N: Right, let’s get on now Beryl.  Your lunch is here.

B: Ooo yes, you know they haven’t done what they’re supposed to yet?  It’s just not on. 

Later on that day I had another chat with Beryl, which finished with her telling me to keep my hair on and then laughing, so there’s plenty of life there yet J which is good, because she’s the very definition of a feisty old bird.

On that note I’ll finish up.  I need to check the doorframe for melons.

Wigs, chemo, baby bouncers and close calls…

Happy bank holiday everyone!

It’s been a mixed week chez Aideen at the hospital. Chemo was tough last week.  I won’t go into detail, but if I say I felt like John Hurt just after he sat down for dinner in Alien, then you’ll get some idea of what I mean.  On the up side I managed to get out in the sun for a bit, had a go at walking on a new gym harnessed treadmill, my new wig arrived and I had my family over from Ireland, so on balance, more good than bad.

So, the wig.  Those of you who have been in to see me recently will know that my hair has decided to stage a rapid exit, pink panther stylie, so the wig was becoming a necessary evil.  I’m currently looking like either a surprised baby with hair fluff on their head or a version of TinTin, depending on your perspective.  I’m actually rather pleased with the wig, which I’m going to call ‘Penny’.  I’m not sure why, but it seems to suit it.  The colours are fab and it’s the same sort of length as I’d had my hair cut to prior to its abandonment of me, so all those who said that short hair made me look younger, make sure you remember that when you next see me. ;-) It needs some ‘shuszing’, which I’m rubbish at, so will need one of my more hair styling savvy friends to do that, but overall I’m happy with it.

The harnessed treadmill was … an experience.  I’d been quite excited about having a go – it would give me the opportunity to try to walk further without any fear of falling if I got tired.  Perfect you’d think.  You’d be wrong.  First of all, in order to get me into the harness it took three people flipping me here, there and everywhere while they clipped all sorts of secure catches to each other and trussed me up like a proverbial chicken.  I sat and brooded on the fact that this definitely did not feel as cool as when I'd been harnessed up for my world’s highest bridge bungee jump or my various zip-wiring and abseiling adventures.  Then it was up on the treadmill, where they adjusted the weight bearing so that I initially felt like I was in a baby bouncer, dangling aimlessly while my feet occasionally hit the ground.  I made my feelings about this position clear and they lowered me a bit so that I actually connected properly with the treadmill and we got started.  I walked .2 of a mile (with assistance from the physios on my feet), which was exhausting but felt like a really positive step in the right direction.  Unfortunately, we then had to go through the whole untrussing process, which similar to the trussing one, was not as cool as previous experiences, when I’d been pumped up with an adrenaline buzz after jumping or zipping etc.  In summary, it was an interesting experience, but not one I’ll be rushing to sign up for again.

My Mam and sister arrived over on Friday this week and it was lovely to see them.  J  While they were here and the sun was out, we thought it would be a good day to get me out to one of the small gardens in the hospital.  What a treat – I hadn’t seen outside my ward walls for nearly 6 weeks apart from for medical reasons e.g. trips for MRI & CT scans, my treadmill experience and my chemo treatment.  Into the wheelchair I leapt (well, leapt is probably an exaggeration, I slid across elegantly (again, probably a misnomer!) on my boogie a.k.a. transfer board) and we sallied forth.  Initially I wheeled, but once I got tired, Kevin took the controls.  As we approached a bench beautifully placed in the sunshine, I said “I can probably park myself from here”.  It did briefly occur to me that we hadn’t clarified our driving rules i.e. that for transfer of control a complete stop is needed, but Kevin is a good driver, so I was confident in his wheeling abilities.  Big mistake!!!   As I careered  towards a closed window, I realised that he’d actually let go while I was still moving …. at some speed.  Panic ensued as I shouted; he ran back and grabbed the chair just before I tipped into the gully immediately in front of the wall housing said window.  I instantly burst into hysterical laughter, while Kevin’s head nearly exploded.  Cue remonstrations, “you said you’d take control”, “you don’t just let go while it’s moving”, but in the end we laughed it off and no harm was done i.e. I didn’t need to change my jim jams!  Definitely a close call though and a lesson very well learned.

Finally, and most excitingly, a leaving hospital date now looks imminent – I’ll keep you posted in my next update…

Bye bye hair, but hello to walking – with the odd tumble

My hair has started to fall out now.  In handfuls.  Which isn’t great.  Of course the logical thing is not to keep running my hands through it to see how much is ‘falling’ out.  When I say falling, I actually mean being dragged out by me running my hands through it, but I can’t help it.  It’s compulsive.  Like laughing when someone in front of you trips – you know you shouldn’t, but you do it anyway.  Thankfully, I had a lot of hair to start with, so it’s not that obvious yet – I’ve got a few days before you’d be able to tell just by looking at me, by which time my new wigs should have arrived.  All very exciting.  Not the sort of shopping I’d expected to be doing a month ago, but exciting nonetheless.

On the good news front, last Friday I walked nearly 40 metres, albeit with a little rest halfway, which is awesome!  I obviously had help with this fantastic achievement.  I was using a frame – yes that’s a Zimmer frame to those of you who are now rolling in the aisles laughing at the thought of me on one of those – and had some help from my physios when my wayward feet decided that they’d face a different direction to the one I was aiming for, but I still did it.  Given that it’s only just over 4 weeks since major spinal surgery, I’m fairly chuffed with myself.

It wasn’t all plain sailing on the walking front last week though, it has to be said.  On Wednesday, when trying to achieve some distance - I’d covered 12 metres - I lost my balance slightly, and because I have no real centre of gravity (my torso is still pretty much completely numb), I started to fall.  Now, once I start to go at the moment, there’s no stopping me, so Craig, one of my stalwart physios, initially tried to catch me and when he couldn’t, heroically threw himself underneath me to break my fall.  Bless him; he definitely went above and beyond the call of duty on that occasion.  I’m not sure I’d have done it – as I’ve said before, I’m no small load.  His efforts were successful though, because I didn’t hurt myself and wasn’t put off trying again, so thank you Craig.  Also, thankfully, because this fall happened with my physios present, I didn’t need to get re-badged with my ‘risk of falls’ band.  That would have displeased me greatly.   I didn’t like wearing that at all – good thing it accidentally fell off quite quickly.

So in general, things are going fairly well.  I also had some fine examples of vena bena over the weekend.  A lovely Sauvignon Blanc and a scrummy white Bordeaux.  To my wonderful nurses and HCA’s who are now following this blog, I obviously only had a couple of very small glasses, more like thimblefuls really….  Thank you to my friends for their continuing support in this area – it’s much appreciated. ;-)

Finally, a Toastergate update.  We now have toast, hooray!  Due to the unprecedented level of pensioner complaining and moaning, H&S were overruled and somebody went and bought one. 

Thank God for rule breakers.

Toastergate!

It’s 7.30 and for the sixth morning in a row I can’t have toast for breakfast.  Now ordinarily, this wouldn’t be a big deal, I’d have something else.  But when you’re in hospital long term, small things like this tend to take on more importance than is strictly warranted and I want some bloody toast!

Why no toast you ask?  Well, it’s a complicated story involving theft, ongoing ward wars, naughty ninja nurses, NHS bureaucracy, health & safety, many frustrated pensioners and me.

The story started last week when a very naughty ninja nurse from ‘a. n. other’ ward snuck in during the night shift and stole – yes stole!! – the Kennett ward ‘good’ toaster from the ward kitchen.  Now, nobody can prove that this happened (because he/she used their ninja powers, they didn’t get caught in the act), however, there are clues.  The toaster in question had a dodgy setting which made it smoke a lot and therefore, set the fire alarm off regularly.  This week, ‘a.n.other’ ward has set the fire alarm off three times during breakfast!  Although not proof, definitely a major clue in the Toastergate investigation we feel… Secondly, a member of staff from ‘a.n.other’ ward has anecdotally admitted the theft, but won’t do so officially for fear of dastardly repercussions from her colleagues.

This left us with one toaster.   Sufficient you’d think to provide toast for 34 patients - but you’d be wrong.  The reason it was the second choice toaster and not the ‘good’ one, was that it needed a bit of jiggling to work properly.  Basically, you had to stick a knife in it to make the toast pop up!  Now we all know that’s dangerous, but we’ve all done it and most of us have the brains to switch the toaster off before we stick the knife inside it, as do the staff here, so all would have been fine – we’d have had our toast, everyone would have been happy.  But oh no, not in the public sector with Mr and Mrs Jobsworth Health & Safety on the prowl.  What with all the fire alarms going off and the no-toast whining from the pensioners, the next arrivals onto Kennett in connection with Toastergate were the dreaded H&S, who after much consideration decreed that second preference toaster was dangerous and should not be used.*

No big deal you would think.  They’ll just get another toaster – two even?!  Oh no, no, no.  Never that simple.  Not in the NHS.  A formal request has to be put in, which needs to be signed off by at least 243 people.  That then has to be submitted to the Chief of All Bollocks who sits up on the top floor.  He/She then authorises the purchase of said toasters and passes the requisition to Chief of Purchasing Bollocks and so it goes on.  Basically, we’re not going to have toast for about 4 weeks.

But we on the Kennett ward aren’t done with the initial theft of Toaster no. 1 yet.  Not by a long way.  The game is afoot Watson, oh yes, the game is afoot….

 

*I have taken some small liberties with the facts for comedy purposes in this post.  However, it's mostly all true.

Chemo gets mean and special cushions are required…

It appears I’m not going to coast through the chemotherapy quite as easily as I thought last week. That’ll teach me to be smug.  The last few days have not been great - still nowhere like as bad as I’d imagined initially, but not great.  It appears these experts do know what they’re talking about when they say week 2 is the tough one.  Nobody likes a smartarse ;-)   I won’t go into too much detail because it’s dull, suffice to say though that I’ve managed to end up with my arse in the air again – more of which later – and have had had to keep and ‘show off’ the more impressive globules of phlegm I’ve been producing.  Delightful stuff! 

I haven’t let any of this dent my determination though – I’d  say I’ve taken a hit, but I’m not even looking at the canvas yet.

So, back to the arse in the air bit.  It’s becoming a bit of a habit now – I’ll need to keep an eye on that once I’m out of here.  I don’t want to become famous as being the weird lady who wanders around Wargrave and Henley on Thames with her bottom out.  A parrot on your shoulder whilst riding your bike is one thing – that’s 'interesting eccentric', your knickers/bottom dangling for all to see is another thing altogether!  Anyway, I digress…. apart from physio sessions, I’ve basically been lying on my back for 4 weeks since the operation on my spine.  This apparently means that it becomes almost inevitable that at some point I’d get a sore bottom.  That has obviously happened this week, whilst my immune system has taken a kicking from the chemo.  It’s almost disappeared actually (my immune system, not my bottom unfortunately) - a 1.4 reading on my white blood cell count for those who are interested, hence the requirement for some top-up injections.   So after MUCH examination, ‘ooing’ and ‘ahhing’ (once by a team of 6 people from Haematology at the same time which wasn’t embarrassing at all!) it was decreed that my bottom needed ‘attention’.  I could have told them that years ago – it’s been increasing in size with no explanation for far too long.  I now have special spray and all sorts of other loveliness lavished on my posterior three times a day, which is fine. 

Sitting on it currently however, is not.  Cue my genius idea.  Now, although I don’t really do the whole baby/pregnancy thing, despite my best efforts I’ve been unable to avoid conversations about childbirth and its associated unpleasantness over the years.  So I knew there were special cushions for afterwards.  Quick call to Mr. J, quick visit to MotherCare (where the assistant asked him how Mum and baby were doing and he just nodded and said fine thank whilst plastering a big smile on his face, bless him)  I’m now sitting pretty on a comfy cushion with a hole in the middle for my sore bits.   It’s not doing a lot for my dignity, but my God, it’s nice to be able to sit up without feeling like your bottom is about to split in half.  I suspect those who’ve either been in my situation, or who’ve used these magic cushions after having a baby are nodding knowingly over their tea and biscuits right now… J

Online shopping, holidays, fire alarms and spreadsheets...

So, the new hair has gone down surprisingly well, thanks all for the overwhelmingly positive comments.  I'm particularly keen on those of you who've said it made me look younger.  Noted and remembered.  Drink behind the bar when I'm back... ;-)  More good news is that Rattling Rosie has been moved to another ward!! Yay!!  I should feel sorry for them, but frankly, I'm feeling way too selfish at the moment, so I don't.  Good luck to them - may they enjoy many hours of her noise...

This whole experience also seems to have created a deeply felt need inside me to spend money online.  It's as if not spending in a normal day to day way has created this primal urge to hit 'confirm' on PayPal and many other varied sites.  I've bought more jim jams than I'm ever likely to wear in my life - although I do like a good lounge on the sofa in my jammies, so maybe in terms of value per wear ... ?

I bought a holiday on Tuesday.  Yes, a holiday.  To St. Lucia.  In December. Now there's optimism (or blind faith) for you.  Myself and Mr. J should, all being well, jet off on December 5th.  Whether I'll be jetting off on foot or wheels is yet to be determined (if it's anything to to with me, I'll be dancing up that gangway, then turning left), but I'm bloody sure that I'll be jetting nonetheless.

I realise I'm fairly safe in the assumption that this desire to spend is being brought on by a fatalistic, near miss awareness.  I was trying to figure out how many cliches I could come up with during our delightful 4 AM hospital fire alarm this morning and got thus far.  All additions are welcome in the comments section.

- You can't take it with you
- Carpe Diem
- There are no pockets in shrouds
- If you're going to be a bear, be a grizzly (thank you Mr. Lang)
- Take the time to smell the roses
- Life is a journey, not a destination
- Live for the moment
- The whole screech in sideways to your coffin saying Woo,what a ride... (which quote I can't remember properly, but we all know and love)
- People don't lie on their deathbed and regret not working more, they regret not living more

All of which are true.  We should pay more attention - cliches become that for a reason.

Anyway, I'm off to look at some new cars online now.  Cars?  Cars you say?  But you can't walk at the moment, never mind drive Aideen? 

Ah yes, but that's strictly temporary.  It must be, because my spreadsheet says so.

From Big Blonde Hair to short new hair - it's all about who's in control...

So, I had the chop last night.  I wanted to make sure that I managed the hair loss situation I'm almost 100% likely to face rather than the other way round.

This is the first time in my life I've had short hair.  Since I was about 2.  Those of you that know me know that I don't feel ready for a night out until my heads been blasted upside down for about 10 mins (and that's with lots of root boosting product!).  So this was a massive step for me.

Cue the tears.  Mine.  Lots of.  Then that was done with - enough nonsense, more vena bena.

My own hairdresser couldn't make it in the end as she had a cold so couldn't come near me, so Brett from Wigg in Henley stepped in and saved the day!  Awesome man, whom I've never met before to take on a task like this.  Thank you so much and thank for sorting that out at such short notice Irish. xxx

It's a big step, it'll take some getting used to (my neck feels cold today weirdly) and I need to learn to use 'product' apparently - at least for the few weeks it's likely to still be there. 
But I did it.  On my terms.

See what you think of the end result.... 

 

 

So, the whole wig adventure will now be the next one....  Bring it on!

A new neighbour. Rattling Rosie's moved next door......

Two new posts today you lucky things!

First piece of riveting news is that our resident shouter, who today I'm calling Rattling Rosie has been moved to the room immediately adjacent to mine.  Delightful.  This is apparently for my safety throughout chemo as she's another longer term resident who they can guarantee is free from infection.  All good news so far.  No, really, it is apparently

Now the shouting.  OMG!!!!!!!!!!!!!!!!!!!!!!!!  

Ah, ah, oh, oh no, no, no  Nursie, nursie, don't leave me.  Nurse No! Get in here NOW! NOW!  Mummy, Mummy, Nursie, Nursie.  All of this ad infinitum for anything between 2 and 9 hours at a stretch.  Let me be clear here so I don't sound like some horrible, unkind person.  Rattling Rosie is ok.  She doesn't have severe dementia - she remembers shit when it suits her.  She's not in unmanaged pain.  She just gets bored.  Clearly, very, very bored.  When she genuinely needs something and rings the bell (which she's perfectly capable of doing) a nurse goes in to see what's the matter and Rosie says "Oh nothing dear, I'm fine".  or "Could you please move me?" or "What do you want?"  The rest of the time is pure divilment!!!  She's currently chatting away nicely to one of the nurses.....  Lovely isn't it - it's 05.27!!!!!!

Now I'm a reasonably patient person, but I cannot see this situation ending well. 

I may still be in hospital while Kevin, myself and many of my other visitors face and serve prosecution for collusion in various crimes at HMP... ;-)

Chemo starts. I'm scared and excited too - is that wrong?

The chemo team finally arrived in the 'unclean' ward that I was in.  There were no bells ringing  or ash scattering hags wailing 'unclean, unclean' mind you, which I suppose was a bonus although the drama could have been quite entertaining . They were fully confident of my side room hygiene given that I'd been nursed as I've said before with the vigour of a team of lionesses minding their cubs, by the wonderful team on Kennett ward. 

Thank goodness they arrived when they did - God only knows what other trouble I could have found myself in if I'd been left there hanging about much longer.  I could have multi-coloured tags by then;

• danger of unidentified flying things
• danger of smart arseness overload
• ideas/thoughts welcome here people ....

The Chemo team were lovely.   Experienced, gentle individuals who reassured at every turn.

They were only able to provide the C.H.O.P parts of the treatment given the environment, there is an R part too - (we all do love an acronym don't we - doesn't matter where we work!), but that was not going to hold them back - oh no, they'd sallied forth this far out of their comfort zone - they were going as far as they could!

I was prepped i.e. are you comfortable, then lean back and relax, at which point they started pumping all sorts of lymphoma fighting goodness into me.  Kevin supported by doing Rocky type fighting moves pretending to be the good v. the bad battle inside me.  All very inspiring - he's surprisingly light on his feet you know, as those who have seen him throw a few shapes on the dance floor over the years will have noted.

The treatment was fine.  I mentioned a funny taste in my mouth at one stage, thinking uh oh, this can't be good and the fine piece of medical recommendation we received was to pop a fruit gum into my mouth.  Again, Kevin excelled in this role.

And that was it.

No nausea, then or later.  No poorliness, then or later.  Just a little tired afterwards.  Since then I've carried on the same - no nausea and definitely no loss of appetite!  This whole image of me being removed through the side window a la the mother in 'What's eating Gilbert Grape' is still looking a distinct possibility, so ease off on the choccy based gifts all. ;-)

I realise this treatment is unlikely to stay this straightforward, but long may it last if so.

Chemo, commodes and face plants ...

Because some cretinous visitor who'd recently been sick decided to visit someone on my ward last week the ward has been on virtual lock down.  Cos, you'd do that wouldn't you.  You'd have that conversation with yourself "Oh I know, I threw up yesterday, I'll just pop down to see Mildred and see how she is in that place full of poorly people with low resistance"  IDIOT!!!!

Anyway, this all meant that my scheduled Chemo had to be fiddled about with so to speak.  They couldn't remove me from my room because although i was 'clean' and 'safe' thanks to some awesome barrier nursing (there were nearly fights, let me tell you!) from my amazing nurses, the Chemo team understandably were nervous about taking their equipment onto an infected ward.

Now I was nervous anyway, which meant I woke at 4.30 in the AM.  Which meant I had to wait all day for it.  Which meant I got bored.  Which meant I got myself in trouble.  I am now officially red carded :-(

Those of a delicate disposition should move to the next entry now.  So, I need the loo.  Not unusual - in fact something that's celebrated in hospital with a gold star! Ooo, well done you!

Once enthroned, with help, I decided that I could probably manage more myself than I had to date - surely a little lean forward for an extra super sparkling wipe couldn't be that dangerous?  Oops - I forgot I have no centre of gravity awareness anymore, so a little lean forward ended up being a full face plant body length across my room.

Cue the apologetic "Nurse, Oh Nurse" calls and sulking when discovered, face down, arse up in air.  Not my finest moment.  Also not well received when Sister says "Oh dear, now what have we got ourselves into here then my lovely"?  Well, it's pretty bloody obvious isn't it love!!!

Just get me off the fucking floor please.  So, again, the brilliant staff did exactly what they do brilliantly, while trying to salvage what little dignity was salvagable in that scenario.

One of the braver ones then entered the room nervously a little later- in a very shuffly way. Em, em, because you've had a fall,we have to put one of these on your wrist and above your bed.  My mutinous face told her everything she needed to know.  But because we knew you wouldn't like it, we coloured one in especially for you. :-)

I now think that many, if not all Row Barge regulars should have the option to sport one of these fetching items going forward....

Words make a difference...

Here's a little Wordle I've pulled together.  It's a whole mish mash of words that feel important to me right now....

I don't know how well it'll work on here, but see what you think...

Mr. J....

I cannot let one more post go by without talking about the amazing strength, love, dedication and courage shown by my wonderful man throughout this short, sharp hideousness in our lives.

Some people are rufty tufty on the outside.  All, and I mean all of his strength is within.

I could not be in this place of courage, optimisim and unwavering hope without you Kevin.

Chemo has now started and I'm excited, scared and thrilled to be moving forward with it.  I'm also learning to walk again.  And ultimately you're the one getting me through it, keeping me sane (ish) and making everything work.

I love you with every single fibre of my being - even though they're not up to much at the moment.

xxx

The Photo Shoot...

An out of sequence post now I'm afraid, which may confuse and I daresay annoy some of more experienced bloggers (I'm very much a newbie).

In the middle of all this chaos, fear and planning my passport has decided to expire in July this year.  Now, given that I'm likely to be mid chemo at that point, I don't think I'm likely to be looking my best in the 'oh so serious photo' we need to take for this.   Clumps of hair missing or baldness may well lead to suspicion of 'disguise or false accusations down the line I feel.....  Heaven forbid, a full orifice check at some point in some hellhole of an airport.  No, this much be done properly!

I decided to be proactive and arrange a hospital based photo shoot to get some pics of how I look now.  Both for the passport image, and also as a line in the sand - this is me and Kevin now, and this might be us then.....

Now, who to help co-ordinate this major event?   Charlotte, for general drama, Loubies for artisan make-up, Kacki for BIG hair, Ickle for general co-ordination and just being wonderful.  And Millsbags decided to come along for the giggle too.  My preferred photographer was unavailable, but thank you for trying Katie, so Sally stepped into the breach with her poshty posh camera.

So I hit the the phones, and the results are below.  I will let you make your own decisions.... :-)   We were all set up for success. Then, Sally couldn't make it, but sent the camera so that was ok. Then Loubies wasn't allowed in because we were on lock down and she was pregnant, cue tears and drama from her and Kacki, bless.  Then, they wouldn't let us out of the room for any outside shots because of Norovirus.  Things were not going to plan - however, as is most cases these things work themselves out. 

We had much fun, the nurses helped with extra sheets to provide white background etc. Thank you ladies.  Some vena bena may have been consumed.... :-)  We discussed it at length and agreed I'd make a start on my own make-up and try some bright colours instead of my usual black ensemble pieces....starting with a fetching coral number from Wallis?  We ended up with this as a starter....

I decided that my hair was nowhere near big enough, so we let Kacki loose with a back comb........ and we've ended up about here.   

 Which is fine I think.... :-)

 

I must take this opportunity to thank my glamorous assistants.........

 

and to include a couple of lovely pictures Vicky took of me and Mr. J.  Hopefully many more of these to come over the years (albeit ideally a bit skinnier, obviously!.

Thank you and goodnight!  xxx

Lumbar Punctures and other fun stuff...

So, to make sure that they knew exactly where all the nastiness was and weren't going to miss anything, they needed to do one of these.

Now I've hung around enough pubs over many years to hear the multiple horror stories so I was not brimming over with anticipation.... Oooo, the needles are huge, and like 8 inches long, they often have to have loads of goes, it's agony, I've heard of people being paralysed (too late for that one, sorry!)

Imagine my surprise and delight to find I hardly felt a thing - there's an upside to temporary paralysis after all apparently.

In, out, done and off within 15 mins - thanks doc.

Then, the even better news later on (after he'd chatted other optimistic musical lovely chemo positive noise for a while), to say "oh yes, that lumbar puncture was all clear - great news eh?"

Why yes, Mr. Mike.  It most certainly was.

Vena Bena and general bank holiday fun ...

Right then, now we know I'm  not popping my clogs too imminently the challenge is to provide me with Vena Bena in as subtle a way as possible.  The first, creative solution was to decant my particular favourite into a Ribena bottle (thank you Carolina!).  However, Mr. J. got mean and started rationing (just like he's tried to do and failed for so many years at the Barge eh Jo?, so we needed to be more creative.)

Vena Bena however continued and we have had some now truly outstanding examples of creative thinking.  To date Sarah, I salute your Tesco Finest non-alcoholic White Grape & Elderflower Spritz! True genius. Irish Nikki, I salute your chutzpah in just bringing in the bottles in paper bags.  Very American.

Over the bank holiday weekend, when so many of you came to see me it frankly got exhausting (jokes!) the bena flowed, Mad Minnie screamed, Lady Lucinda was moved, I got several pedicures, did quite a bit of internet shopping and it ended up being quite a nice weekend apart from the whole not being able to move from my torso down stuff and the big C.  Who'd have thought?

I also had a lovely Loch Fyne dinner delivered to me (thank you Ickle Nikki and my beautiful Evie my superstars), lots of other goodies and a general sense of bonhomie reigned.  I'm sure it must have been just like hosting an 'at home' back in Victorian days, with even the opportunity for a little faint ....

I also got to spend time with my Mum & Sister, which made them, me and yes, even Kevin feel better about things. xxx

Thank you to each and everyone of you who has stepped up......  Jimmy, also for walking my pack (and yes I know what you're doing!)

You're all amazing. :-)

Friday dawns. A whole new world of opportunity has opened up....

Friday dawns.  It's like a whole new world of opportunity, which given the scenario is pretty bizarre.  I'm woken my Moaning Minnie next door, who bless her is partial to a bit of noise.  Like 9 HOURS NON-STOP NOISE.

None of this coming in to hospital to sleep, heal and get better, oh no....  YOU WILL STAY AWAKE AND LISTEN TO ME CRY FOR NURSIE!!!

I beg for industrial strength ear plugs. They work.

The staff are yet again amazing and do their best.  She does have one redeeming feature though and that's she is quite mischievous.  At one stage she's weeping and wailing so one of the physios I'd just had a session with bent down to see what what us. "What have you dropped Minnie?"  Oh, it's my 'h's - I've been doing it for years.

Du du dum!!!  It just goes to show there's some life in all of us yet....

Bank holiday weekend also brings with it a host of wonderful, wonderful visitors, all tasked with a simple challenge.  To provide me some level of access to the mysterious new drink called Vena Bena (to which I feel completely entitled given that my liver (yes, to those of you who are about to blatantly disbelieve this!!!) is "clean as a whistle".

Ha!!!!!!!!!!!!!!  I should clearly have been working harder with more gravitas and dedication over the years.

Let's see who cracks this with the most success and creativity....

The Big C news....

Thursday afternoon - just before everyone bar the essentials leave for the Bank Holiday weekend.  In the team come.  We, and the very limited number of friends we'd shared this with by now are thoroughly Team Lymphoma  (which frankly is an odd place to be and means no dis respect to others suffering through this - it's just our odds were so heavily stacked one way).  Some of our more risque friends had even had cards printed eh. Crystal Tips?)

Do they launch in and give the news straight away?  Oh no, "talk me through how we got to this place".  How long has your back been bad?  JUST TELL US!!!!!!

We're sorry to confirm that you have non-Hodgkin's Lymphoma Diffuse B aggressive.  I punch the air and say YES!!!  The oncologist looks at me like I'm certifiable and checks that I understand what he's just told me.  I say yes.  I understand clearly.  You've told me that I'm going to fight, kick the shit out of this thing and live.

Thank you.

Now, I've been neglecting to introduce a bit of humour here and there in these last posts because they were the 'serious' ones.  The next few shall start to introduce some of the characters that I've come across since I've been here - and they are many and varied.  We have Moaning Minnie, Lady Lucinda, Unnamed lady with knickers on her head and many, many more.  Pure, unadulterated genius of society cross section.

The NHS is a shining example of wonderfulness.  I am in awe of the treatment I've received here from start to finish, from every single member of staff.  No matter what the outcome of this ultimately, you are all superstars.

I have to do what? Learn to walk again???

So this business of learning to walk again.  I thought it would be a matter of time, things would come flooding back and there I'd be skipping the light fandango up West Street for a refreshing little VLT.

But no, apparently, that would be far, far too easy.

Once your spinal cord has been as pressured/swollen/etc. as mine, the signals along the cord i.e. your Central Nervous System can get all mixed up.  Which makes walking again difficult, if not downright impossible.

Now that scares the living crap out of me.  Never to be able to just pop out to the shop, wander into the kitchen for a cup of tea (oh OK, glass of wine).  Never to be able to walk my dogs again. Never to do any of the myriad things I'd taken for granted for oh so long.  Potentially devastating news.

Thankfully, into the breach step my new hospital physio friends. Who are brilliant at what they do and are much, much fun..  Well as much fun as you can have shuffling along the floor moving peoples feet between parallel bars.  Two days after major spinal surgery (yep, they don't hang about on the NHS these days), they had me sitting in a wheelchair and hoisting myself up between the bars. Jesus that was hard work. I then had to remember about 20 something different instructions just to get ready to lean forward to take a step - not take a step mind - just to lean forward enough (without going tit over arse) to take one.

The fact that Helen sometimes confused her right/left made it even more brilliant - we ended up doing the chimpanzee piano movers - to me, to me, to you, to you....

Thanks ladies, I have every faith you'll have skipping that light fandango again - maybe not as fast as I'd like.  A year or more is realistic though we hope.....

Monday. Reality keeps biting - feck off - I'm bored of you now!

Monday, the team troop in to deliver the good news that the op was as successful as they'd ever expected it could be and they have high hopes I will retain some level of mobility. 

I may never throw shapes around a pole again (but let's face it, at 43 and overweight it had stopped being a good look to everyone except me many, many years ago.)

Now the cancer shit.

They'd done a CT scan just before surgery and the odds hadn't changed.  The other bit of bad news was that although Mr. McKenna (all bow down now) had removed what he could, it would take a few days to 'culture' that to truly understand what it was, so they may not be able to tell us which version I had before Easter weekend. 

Great.  A week of waiting for a death sentence.

We had all 'the' conversations.  My overriding terror was of a slow, miserable death,so we agreed that if it was worst case scenario, I was going to come out (as in from hospital not in a sexual way - far too late for that), have a massive party, then bugger off to Switzerland to die with some dignity and under my own control.

If if was the other version, I was going to tell this Cancer bastard to fuck off.  And when it got there, to fuck off again.

Apologies for the swearing here, but sometimes only certain words work for me.

We waited. And waited. And waited. And waited.

Hi ho, hi ho, it's off to op we go....

So, eventually about 6ish, they wheel me down.  I'm terrified, spinal surgery is notoriously dangerous, but I'm surprisingly calm at this stage.  Probably the hunger after hearing about that lovely lamb roast!

Into pre-op and all I can think to do is apologise for my hairy legs - clearly, I hadn't had time to prep.  Funny the things that seem to matter when you're in a life risking situation.  I mean would the big man upstairs (or the downstairs one indeed - I haven't led a totally exemplary life) really be offended with a few hairy leg, bikini, toe nasties?

Doubtful, but I certainly was.

Anyway, in with the injection - here goes everything.  Literally, everything.

So, bonus.  I wake up and they tell me it went "as well as they could possibly have expected".  Now in cagey doc speak, and my drug induced state I take that to be a good thing and drift off to land of nod again.  Feeling quite chilled really.  Sometimes, drugs are good.

I then wake to find the lovely Mr. J beside me holding my hand and saying that everything will be ok.  For some reason, this time my inclination is more to believe that he is superhuman, has become miraculously medically qualified overnight and knows that this is the correct answer.

Again, as I say, sometimes drugs are good.

I pass out, hope and pray.

Surgery incoming...

Originally, the plan was that I'd be on the list for late morning.

 They were going to get the normal stuff out-of-the-way, because I was the "big one" that day.  In a weird way they all sounded quite excited.  I was lucky enough to have the illustrious Mr. McKenna (all bow when his name is mentioned).  Apparently one of the top dogs in this area.  All good.

I was obviously nil by mouth etc. ready for op.  This wasn't bothering me as funnily enough I didn't have much of an appetite  - at that stage.

The day meandered on. 

I lay there. 

Mr. J needed to home "to look after the dogs, cat etc."  I believed him.

I then called about 4ish and said I was still waiting, what was he up to?  "Oh, just about to have roast lamb - my sis popped over to cook me something". 

Unutterable bastard.  I hung up.

He did have the grace to call back and apologise and to reassure me he didn't enjoy it, but I won't forget that. 

Not in a hurry.

Reality bites...

So, they admitted me to a Kennet Ward and dispatched me for MRI scans.  I won't go into detail about them - they're nasty, claustrophobic, noisy as fuck (think jack hammer inside your head) and take ages, bu they do their job.

A couple of hours later in troop the team.  Mr. Important first, followed by the various levels of importance all following with their heads bent at respectful distances.

"Well we won't beat about the bush (good thing really, my lady garden was not in a good state after 3 months with a very bad back!).  You're got severe compression against a nerve in your back which is pushing against your spinal cord.  In these scenarios we typically have up to 72 hours to save the use of your legs.  What time exactly did they start to go?  We need to figure out how far into the window we are?

Well, about 6ish yesterday evening in the truest sense, so we're already 24 hours in.  Shit.

But oh no, he wasn't finished yet.

Now, these things apparently just don't happen by themselves. The MRI had identified some nasty legion of things ganging up on my spine - called cancer.  Yep, the big C was dropped in the same conversation.  Not the best 6 minute chat I've had in my life and I've had some shite ones with some very pissed people over the years.

They then very sensitively said they'd leave us to process this bombshell before they discussed next steps.

Where do you go from here?

Diagnosis Day 2

Well, not overly medical.  Just lots of fingers being stuck up arses - most particularly mine.

1.  Can you feel that?  Yes.  Can you clench down? Yes.  Good.

2.  Can you feel that?  Yes.  Can you clench down? Yes - ish.  Good.

3.  Can you feel that?  Yes.  Can you clench down? Yes.  Not really.   Right.

4.  Can you feel me if I touch here on your foot?  Leg?  Knee?  Sort of.... 

No, you haven't moved to a Fifty Shades of Grey blog - we're still on paralysis and other nasty shit.

A lovely lady from the spinal unit came along and they decided to get me up and try to see if I could "have a little walk" i.e. even support myself. 

Pissed Bambi on ice wasn't even playing in the same league.  I was all over the place with no control. I was pretty much paralysed from the torso down.

This was not turning into my ideal Saturday. 

I'd had plans to get legless that night.