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. :-)