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. :-)