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.