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…