Day minus 2 today!!

Oh, hello there. Days minus 3 and 4 were mostly spent in a feverish haze... one of the chemo's can do that apparently, so I've alternately freezing or boiling, and mostly asleep!

So not much to report from those days I'm afraid :))

Today is my last day of chemo - huzzah!! I am being hooked up at 11.30, and will have to pee every 10 minutes until 4pm - the chemo takes half hour but the fluids will take til 4am, they are there to flush it through and out, so it's DEFINITELY pissflapping day today haha!

Tomorrow will be a day 'off', then I get my stem cells back on Thursday - yay! So far my mouth has been behaving, I have 2 mouthwashes to swill with several times a day, but it's likely to play up in a couple of days time, although I'm hoping I'll be a level 1 not a level 5 in soreness!

I have a nice rash too from the drugs, all over my chest and thighs, and the runny poo's have begun.

Anyone desperate for a SCT now then,..have I sold it well? ;) HAHAHAHA!

Belated day - 5 ...

Greetings. Couldn't quite muster the strength to get online last night so here's the gist of what happened yesterday -

Woke up not feeling refreshed! I think having so many fluids and having to pee every hour doesn't help one's sleep patterns! ;)

Slept all day apart from being woken for obs, food etc, but didn't want any food... forced the soup down at lunch time. Tried plain jacket spud at dinner time. Had been cold all afternoon, 'uh-oh' I thought, 'here comes something'!

Managed to call Pam (wonderfully looking after my girls this weekend) and Deri briefly about 6pm, I do miss my girlies!!

So yes, threw up at 7pm, and then slept all night from there! Have a vague memory of them doing my obs more often so assumed I had a temperature too.

So it is like a roller coaster really! ;)

Woke up and grabbed the card n pressie that Meg told me to being in with me for Mothers Day today - lovely card and funky bedsocks (already had my trollbead last week) - the card reminded me of why I am here - to kick this pissflapping bastard cancer back where it belongs - ie: far away from me, or any of us hahaha!

day minus 6

WHY do they insist on bringing you fresh water at 6am, closely followed by doing your obs???? 6AM!!!

Then a call at 9.30 am from my mum...Deri missed her school trip today, as she threw up last night... :( I spoke to her, and just wanted to cwtch her up with a blankey, but can't ... BALLS!!!!!!!!

Anyway... lots more fluids, 2 hours of chemo, more fluids. Dunno what was in the chemo but when it began I had a funny taste in the back of my throat, kinda metallic... only lasted a few moments though.

I am weeing and pooing for Wales today!!! I lost count how many times my reading/napping was interrupted by visits to the loo! Feel a bit nauseous this evening but nothing too bad.

My skin feels very smooth in places, in others it is very dry. Maybe it's trying to be a type of wine ......

And very very sexily, they have put on my legs, a pair of DVT socks!!!! Mmmmmmmm, bald, nauseous white DVT stockinged lady, lovely hahahahaa!!

As I came back from the loo a nurse asked if she could just shut me in my room for a mo while they did something.....mysterious...... I glimpsed a bed being wheeled down the corridor - I think it's one of the post-transplant folk being moved about - once I get my cells my door will be closed at all times - apart from nurses coming in - too. They are, excuse the phrase, shit hot on their germ control stuff!! And this is good.

Apparently I am quite unique in that most folk on this ward have donor transplants. Well dear, didn't want to be too common.. hahahaha!

Had a visit from aunty Chrissy (mums sister), with a book and a card. Had a pressie delivered from some crazy cat lover too - naughty, but much appreciated!

And another lovely chat with my girls :)))

Hugs and Love to you all, coz your TREMENDOUS support is helping ENORMOUSLY.

Xxxxxxxxxxxxxx

Transplant begins!!

Apparently it is now Thursday. I'll come back to that.

Had a nice weekend with the kiddies, and with my friends.
Friday evening Deri stayed with granny and I went to Jo's with a few other mums from the area for a rather nice gathering, lots of wine and scrummy nibbles! The mums from Deri's school clubbed together snd bought me a trollbead! Wow that was lovely. Jo then presented me with one I was saving for - a silver one called 3 siblings ... very sweet, nearly cried! Saturday, Deri started riding lessons. She has had sporadic sessions of horse riding, and been nagging me for them to be regular, and her friends aunt owns a stables, and I am friends with that aunts sister,,,, so we are paying but going in on her friends lesson which ususally is just them and their cousin :) Deri LOVES horses and will be a happy womble every fortnight now haha! Then we came home, ate chocolate and watched movies. Her big sisters babysat that night as I was invited to my friends for another Pre Admission Knees-Up, where we drank far too much vodka (or just the right amount, depending on one's viewpoint!) and pink bubbly haha! On both evenings I had SUCH a good laugh, and just soaked up all the love and support ready to take into hospital with me... just as I have soaked up the love and support I have from everyone, at home, on Macland, everywhere! On Sunday, I sat down with Deri and her calendar, explained how the doctor wanted me back in hospital, it would be for longer but then I wouldn't need to come in again (thats my plan anyway!) and we marked off the days and gave her a packet of stickers to stick on one night at a time. She said ''only 2 more days with you before you are away for a LONG time" ... big gulp, no tears, smile bravely and convince her it's all good! Which, it will be...

So, Monday is spent packing. And told to call at 9am Tuesday... which I did, and was told to come in for 3pm. Then called at 1 pm and said no bed free til 8pm, but I couldn't get a lift at 7pm (coz of kids) so I arrived at 3.30 and sat in the relatives room until 8.30pm, watching tv and reading and had my patient's dinner served in there too!! This seems to be a trend with me and my admissions haha!

Put on a 4 bed ward - 1 woman has HL and has a 12 day old baby born at 31 weeks via C-section in neonatal and she's in coz of temperature after chemo!! The other 2 women have leukemia. Next morning, HL lady can go home. I am given bloods etc but no treatment. Then last night about 11pm, an elderly lady was wheeled in. Quickly established she also has advanced dementia. They inserted a catheter and she dozed off.So did we. Then at 2.30am I was woken by her at the foot of my bed, the catheter trailing behind her. "Hello? Can you help me get this thing out, I don't know what it is?"
WHOA! 'Oh no', says I, 'we can't take it out, wait there and I'll get a nurse'...
Well this happened at various intervals during the night so not much sleep had by anyone, poor old dab, she's a real sweetie.

So then it's today and there are bloods being taken and charts drawn up and protocols to read and chemo days to absorb........and then taken to the transplant ward across the corridor and through big double doors into my single room. It has an ok view, it has a flat screen tv and remote, it has my laptop and DVDs and books etc.... and I can keep the door open as much as I want until stem cells go in and then it's door closed at all times. The food is better than at Nevill Hall so far, huzzah!

Today is day minus 7... 3 hours of fluids, 2 hours of chemo, now on 11 hours of potassium/saline. days -6 through to -3 I have a different chemo, then day -2 another one again, then -1 is a rest day with no chemo, and then day Zero is stem cell day.

I have managed to Skype my kiddies each evening :D Yay!

So, here we go, da da ddaaaaaaaaa.......................

7 sleeps

Well, here we are. 7 sleeps before SCT.
As long as they have a bed for me when I call them at 9 am on the 13th ;)

Half of me wants it over with, to crack on, the other half wants it to not happen haha!!

I am a whirlwind of emotions and different headspaces right now. One minute calm, collected, accepting that this SCT WILL make me better and to bring it on. The next minute i am panicking about my kids and all the What-If's surge through my brain and then I have to pinch myself and remind myself that 8 months ago I had a bombshell told to me but nothing has stopped me getting better slowly and this will jolly well continue!

I noticed that my diary entries were getting a little more sombre than at the beginning, not always doom and gloom, just maybe more reflective sometimes? And then I see new arrivals on the Macmillan website and read their first few entries and comments and I recognise myself! I was that slightly naive person, bravely laughing at all the shitty stuff being told to me! Yes, I AM still laughing at cancer and kicking its arse still, but with the experiences that I have encountered, I think the humour becomes more gallows and the dark days rattle more loudly in your head when they make their unwelcome appearance!

I notice that sometimes I feel very protective and worried about my children and friends and family, and sometimes I feel resentful, or irritated etc.

And although I do not want my kids to know how crap I feel and how difficult it is being SO tired all the time, some days, if they are playing up or being stressy, I feel like telling them to shut up because I need no stress to feel better and how dare they they stress over pathetic issues etc... but of course I can't say that because to them they are important issues and it's not my place to give them guilt! ;)

And although I do not want to be fussed over and asked how i am every 5 minutes, if someone DOESN'T ask me or I don't hear from a friend for a while, I feel quite put out! But I do not wanted to be treated differently, that is what I said at the beginning of all this. Yet that is not QUITE true I now realise. Well, nearly not true... see how tricky this gets ?! haha! ;)
I want to be treated the same, but with a bit of extra attention, but only when I am in the mood for that. Fucking hell, it's quite a balancing act for both me and those around me I am sure!!

It's natural I guess... all this being on swings and roundabouts and a roller coaster too.
Do I sound selfish? Or weird? Or like a normal person coping with a shitty disease that fucks with all our heads?!

My relationships with everyone have shifed too. Not massively, just subtle little changes, and whether they have been made by me, or them, or us both, I don't know. Not conscious changes either. And perhaps, it's just me and my head noticing things differently? My perceptions have obviously altered and so I suppose that influences how I interect or how I think we're interacting??

Maybe I need to stop thinking so much :D

'Stuff' - good, bad and the ugly - and the fun ;-)

Made my call to the Heath Monday morning: explained my circumstances - was told that there was another lady with the same disease status as me (now there's another new bit of terminology... disease *status* - hey, what's your status..? haha) who had been pencilled in for the 13th March, and if she hadn't been told that already, they could swap us over... so waited for a call the next day.

So Tuesday I went for my reflexology...always bliss. The manager, Diane, stopped me for a natter afterwards; she likes to see how we're doing and make sure they're doing what they can etc. As we sat chatting, Diana told me about Carer's day, which is once a month. She said my mother could come in that Friday for a free treatment - I said yes, call her, she'd love it and she deserves it! Then I told her I was hoping for a call and hoping it would be the 13th - and then my phone rang and I had the news I wanted!! Yes! :)) They said my ''release date'' (haha, am I in prison heehee) would be the 6th April - fab... that means I can be home in time for Easter and for Deri starting new school :)))

On Wednesday, as mum and I were walking towards the cinema from car park, I had a call from the Heath....
This rant may prevent me from punching my dentist in the face, or the balls.
Ok, as we know, I am due to go in for a stem cell transplant soon. Prior to going in, they send you for tests and scans and x rays and to the dentist - to check you have no areas of weakness or infection etc anywhere in your body (lungs/teeth/kidneys etc etc) which would be trigger during transplant - this would result in an extra nasty infection due to zero immune system and therefore heavy duty antibiotics and possible a proglonged stay in hospital (already in for 3 weeks).
Ok, so passed all my tests, then went to see dentist - (should add here that I am seriously PHOBIC about the dentist. Without a doubt, I very much am! I asked for sedation last time I went, he refused, kinda mocked me, so I didn't go again until now!) - I explained it to him. He said that I needed some work done but the healing would take weeks and delay the transplant, BUT that the work needed was not urgent and would cause no DIFFUCLTIES OR INFECTIONS DURING TRANSPLANT. He had to write a letter to this effect to my consultant. He said 3 treatments, a week between each one, and 4 weeks to heal the root extraction.

I took the letter with me when I saw her this week.. I opened up the envelope and saw immediately that he addressed letter to the name of the hospital. Erm... Then he started letter with a reference to me missing one of his appointments. Um... but went on to say I could have treatment done at a later date.
Anyway, the Heath hossie called to say his letter was a bit dubious so they called him - he told them something rather important that he omitted from his letter - I actually have an abcess on one root, not active as such but its there, waiting. And that he can do all 3 things on one day (Thursday) and with strong antibitocs, I'll be healed in 7-10 days.

WTF??

So I could have gone in on 13th, had the SCT, and then had a massive infection and abcess, delaying my recovery and causing potentially dangerous complications?

Oh, that's alright then!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
AND........ what's with the sudden change in healing time? Been caught trying to blag more fees eh? Fucking stupid idiot, how dare he play around with my health like that????????????????????
Right. Better getting all that out! Perhaps a letter regarding negligent attitude may be therapeutic too haha!!!!!

By the way, we went to watch The Best Exotic Marigold Hotel - AMAZING!!! Just beautiful :))) Such a nice treat too, just me and mum, doing something relaxing :)

As I am phobic , I was nervous and stressed already. They wanted me to go to him today and get this work done?? I called Windsor suite first thing this morning and spoke to the fab Sandra, who spoke to the orthandontist to see if THEY could fit me in instead. As he had offered me an appointment, they couldn't treat me :( I told them I will need sedation, and Sandra got a prescription ready to pick up prior to appointment with Mr Thicko Dentist.

First, it was Cwmdu school's mini Eisteddfod, so went along with mum and Bryan, bought tea, cake and raffle tickets and watched Deri and her gang sing and play instruments and also be waitresses/waiters for our tables :))) Fab!! Always a little tear in the eye :))

Then, off I went, picked up sedative and off to stooopid dentist, feeling a bit sleepy - that may have prevented me kicking him in the balls! ;))
Some weird contraptions were shoved in my mouth and two back molars were tugged out. A re-filling done too, and then home, where I fell into a drug induced coma for a few hours, thanks to a lift home from mum and Bryan, who also left a meal for the kids and soup for me :))) I will be looking after the wounds very well to help them heal in time for the 13th!

Tomorrow is a day or much leisure - coffee with Jo early morning, then meeting Lou, then meeting LM, then of fout to the Manor hotel in the evening! I need some spoiling after today!!