Tuesday, 8 March 2011

2010 8th March - On Parole

Sooo, what have I been up to lately?

Bandit weekend was wonderful, obviously. Just a shame that this is the second time we've met at my house and the second time it's followed the death of another Bandit. Now Peter is gone aged 58. Like Bec and myself he'd had spread to his liver and lungs, like Bec also his brain and additionally, painfully to his spine. Still, once a bandit, always a bandit. I have a fear of arranging our next meeting, me being "next on the list" statistically speaking, but I hope that coincidence is one even I can't bring to fruition.

Deb amazed us by arriving first, laden with food and Wonder Woman Mac Glitter (dutifully worn in hospital for chemo week). Katie wasn't much longer, laden with yet more food, drink and PJs. The next 30 hours or so were filled with girly chat about boys, work, cars and everything. Add to that mountains of coffee table picnic food (one can never have too much falafel or houmous), or in fact cheese (I did partake in a small dip of bread into a baked camembert). Feet and hands were soaked, manicured and painted plus pretty flowers and jewels. Not forgetting the green mud face masks.
Lisa, Katie, Lady D

Baby, Izzy and Gunther
We were rubbish at watching much on TV, far too much talking to be done! Oh and the tea, we drank a LOT of tea. Never have I had so many mugs of tea on demand in a weekend - I suspect I've never been so well hydrated.

No sooner was my weekend over after my bonus week off treatment/hospitalisation then it was Monday - readmission day. Beckie had a day off so we went into town and I ended up spending a bit more than I probably had spare on some clothes. Neither of us was hungry so we just had a hot drink (chai soy for me) and a cake in Neros. Managed to arrive a bit too early for my 4 O'clock admission but hoped they'd be able to get my blood done. They did get my blood done, depsite some confusion from some of the staff as to why I was back (communication, awesome) to start with. (I came in last week, stayed a night, got sent home cos I was neutropenic AGAIN) and am coming back for chemo in the hope I'm no longer reading so low on the neutrophils). I was told it would take half an hour for my blood results. Beckie waited with me about 4 hours - no news. I decided I may as well stay the night waiting and sent her home to eat. No ensuite room this time, but a ward full of noisy patients, well not that bad really, some came and went in a day. Still, the long trek down the corridor every time I had to empty the bag of air or solid (bearing in mind I'm on constant laxatives to keep everything clean and moving and prevent another retraction) was another reason to curse my blood. Last week I had an ensuite for a night :(

Chemo was as predicted, spent with me trying to catch up a night of no sleep in a reclined chair, followed by a shuffle back to the ward. Sister B said "What has M done to you?". I guessed I looked a little how I felt. Wednesday I did manage a crouched shower in the bath. I slept, ate, drank and went to the toilet. Thursday, no energy to stand for anything more than brushing my teeth. I slept, ate less than half what I received, drank when I could and went to the toilet. The emphasis being on sleeping. I missed my stoma nurse's visits twice because I was asleep. On Friday I was a little more awake. The Dr on the ward refused to let me have GCSF to encourage my bone marrow - yet my script on the injections in THEIR fridge said "to start on day 3 of chemo". I had an appointment with Dr Tom at 11.15, getting the nod from stoma care that he was at least 30 mins late a student nurse took me down to wait. I was struggling from the effort of sitting up after two days sleeping. Hot, sweating - possibly from the new brand of Fentanyl patch, by the time Dr Tom sat down to catch up I was shaking uncontrollably and struggling to breathe. They got me on the couch and my pulse finally started to slow down. I had tears rolling into my ears. Frightening and I they were already processing my discharge. Dr Tom said he'd see me on the ward later as I wasn't well enough to go home any time soon, clearly.

Back on the ward I asked for dinner (it had been served). The catering lady took one look at me, all colour absent from my face, and asked "are you sure you want to eat?". I figured maybe my blood sugar was low and eating certainly helped. As I didn't manage to pass out or feel like I might again and nobody had taken my obs all day or even been to check on me between 11.30 and 6pm, I decided I would go home. A HCSW told me Dr Tom was coming to see me soon - I could hear him on the ward saying in response to my name "yes I'll go and say hello in a minute". But he didn't. Someone told him they thought I'd gone home....I didn't catch all the response but I still thought they'd check. By the time someone did check - "Oh I thought you'd gone" it was too late and he was on his way to Lincoln. Having been almost given a second anti depressant instead of an anti sickness tablet the day before "oh, they're in the same box" (no they're not you stupid mare, one is square and white and says metaclopromide, the other is thin and long and white/pink/blue saying citalopram, you're a nurse FFS), fighting to get my GCSF jabs (Dr Tom sorted it for me) and having a used needle left by my bed I was kinda ready for my own home. Home was freezing so I went to bed in my clothes and scarf.

Hayley was over from France for our school reunion that then got moved to May, but tickets bought was a good enough reason to come and spend the weekend feeding me up apparently! I wasn't up to much, we managed to watch a film at least, not that she'd let me do anything anyway. Despite the BB feasts, 3 delivered meals for a week and Hayley's efforts I still lost weight and am back down to 132lbs (59kg, just under 9.5 stone). You'd think what I ate last weekend was enough to pile half a stone on and keep it...apparently not when you're on Irene.

Karys came over on Monday and it was hot enough to take the hard top off Izzy, but I wasn't feeling quite ready for that level of exertion. It's nerve wracking enough driving once a fortnight for the first few miles. We ate leftovers from Hayley's visit and our usual (wheat free) crackers and cheese. Most of the day before she arrived I sat in the conservatory soaking up the sun and the heat, it was wonderful - feeling like summer is coming.

Last night was horrible. Since I started injecting the GCSF I've had increasing pains in my spine and pelvis - which I recognise from last time, marrow pain is something else. I was awake till 4am unable to lie still, unable to move much, the pain was obviously bone deep and nothing would stop it, not even the Fentanyl lollies. I've learned today I should try ibuprofen or other NSAIDS but even so, I just couldn't bring myself to do today's injection. I've had four out of the five for this cycle, I might do it tomorrow, but I just can't take another night like last night, or worse.

Because of the expectancy of being neutropenic on Monday, I very reluctantly withdrew from a trip to Oxford St, London to be measured up for a fashion show at the end of Beating Bowel Cancer's Patient Voices event in April. I'm just too scared to end up with another infection, a virus which will put me in hospital and at risk of death just because I don't have enough white cells. I know 0.9 isn't dangerously neutropenic, but and infection could reduce that further. I've heard of too many people "being taken in for dehydration, getting an infection and being unable to fight it". I'm not ready to take that risk for a couple of days good times.


Carole said...

Hi Lisa,

Great to read an update from you.

Glad you had a lovely time with the girls.

Hoping you start to feel less pain really soon.
I'm sitting shaking my head in despair at the staff in your hospital :-(

Hugs xxxx

Tony Songhurst said...

Yo Lisa,

Good to hear from you, your hair looks a bit like mine :-)

I cant wait for the summer so I can sit outside in the sun, been pretty cold, wet and windy up here in Matlock but hoping it will get better soon.

It is a shame about the hospital as that should be a place of respite where you feel safe and get looked after...shame it is the complete opposite.

Thinking of you and hope you get some more good times soon.

T x

Loopy said...

My hair looking like yours might explain how the lad in the MacDonalds drive through thought I was a man and said "there's your food, Sir". My son was disgusted - I'd not long had the conversation with my kids about looking like a man without a wig and make up - they insisted I don't....

Crushing and humiliating to say the least, so I'm never leaving the house without at least eye make up again unless I am wearing my wig.

Tony Songhurst said...

i could never be mistaken for a lady though as I look like a big foot! 6,3 and 21stone :-)... he must have thought you were a good looker anyways...

Macdonalds...what did you have, i haven't been there for years! although I do have a craving for KFC, chips and chicken gravy...

My Liver Tumour has reduced by 19% from 2.6cm to 2.1cm and no new growths so all good with me apart from the chemo hangover :-(

T x

Loopy said...

I just had a tea and a vegeburger thing - realised I'd not eaten and it was 2pm when I picked my son up. Got my son a milkshake. Never a good idea to drive on low blood sugar and strong painkillers!

It's not somewhere I frequent - not being a vegan wheat free establishment but since I've started eating wheat again it was the best option on a Sunday. Wheat free is my first choice of course.

Loopy said...

Great news on your tumour. Wish I only had one :o(