Wednesday, 23 March 2011

2011 23rd March - Izzy Is Now Legal!

Chemo didn't feel like it was so bad while I was having it last week.  I did have some company for my first infusions from an old friend who was coincidentally in the hospital which made the time pass very quickly.  I could barely keep my eyes open by the time she left.  I think they wanted my bed because I was discharged on Thursday.  Annoyingly they had my chemo disconnection down as 4pm despite my appointment being 2.30.

It's already feeling like it's taking longer to recover.  My son rang on Saturday to check I'd be fit to drive the next day so I could see him.  I wasn't confident when I said yes, but wanted to see him.  Bless him, he'd already said he could do some jobs for me and ended up cutting the grass and washing the car.  He may look like a man but he's still my little boy in there somewhere who wants his mum's hugs. His sister came on Monday and baked cakes then painted my nails with some nail art pens I bought but found I'm useless with.  I ended up with Pac Man and some ghosts :o)

I had quite a constructive week two weeks ago in my non poison week.  I put in a claim for ESA because my SSP runs out at the end of March so I'll be £79.15 a week worse off.  I can't yet bring myself to hand in my notice because it feels like giving up, yet with the only communication being two letters requesting permission to see my medical records how could I go back?

I finally booked Izzy in for her 11th year or 99,000 mile service - HOW MANY MILES?  She's not done 38,000 yet.  The service was due in December but given the fact that I've been housebound or in hospital most of the last 6 months I figured it could wait.  Unfortunately I realised I've had her nearly a year and not had an MOT was due mid January.  Oops!  Luckily the very friendly and accommodating service receptionist was quite happy to squeeze in an MOT as well at zero notice yesterday.  It meant leaving her all day. After walking round Boston trying go get timetables and hitting the pain threshold by the time I did - a taxi home seemed the only option.  There really is no bus that stops within 2 miles of my house. Before I came home I dropped into the council offices to let them know about my new claim.  I'm getting council tax credit because of the Income Support and you have to tell them everything.  The advisor was also really nice.  I heard her speaking to other people before my name was called and relieved she was very sympathetic and patient, not that I needed anything but it's still nice to know you're not about to see a dragon.

It was a beautiful day but I was very tired after the walking so it was just the sofa in the conservatory with the door open for me in the afternoon.  The garage rang to say Izzy had passed with no problems (well the headlamp aim needed adjusting - no big deal!) and there were no advisories and 5 - 5.5 tread left on the tyres.

Beckie took an early lunch today so she could take me to pick her up and the engine sounds so much better for the service.  I felt a bit guilty about having left it so long - I mean she did get me to France and back.

I've done nothing else today.  Too exhausted from a sleepless night due to Fatty working overtime - seems I ate something that didn't agree with me, lord knows what but I felt ill all night and had to keep emptying.  He's been barely visible all week but still working so no dramas with another admission at least.  Tomorrow is a busy day with a visit to the chemo suite for a line flush, urology appointment and my second counselling session.

Saturday, 12 March 2011

2010 12th March - I'm Definitely Not The Only One....

I've had a pretty crappy week in some respects, the horrendous pain from the GCSF injections (I never did give myself the 5th one) only let up to give way to yet more leaking from my fistula.  It's mucous, liquid and blood in varying quantities but basically too much to cope with.  When it's coming from somewhere you have absolutely no control - because it shouldn't be there in the first place then staying at home, near a bathroom is the easiest option.  Thursday was the worst day - despite having a trip into town to deliver a bin bag full of clothes to CRUK charity shop and another to St Barnabas Hospice where I had my first counselling session.  I was in increasing pain from the spasms - deja vu from October, November and February.  But it was periodic to start with.  By Thursday evening it was constant.

The counselling session was good, I like Daphne and she did just sit and listen and add a little insight here and there and basically validated all my feelings.  My feelings, my feelings about protecting other's feelings, wondering how other people feel about me and this whole business.  The usual survivor/patient guilt that I'm sure some of you can identify with.  I've had 3 lots of counselling over the last 15 years when I've had "episodes" and needed medication to stop things going too far so at least I'm used to it, I know what to expect.  Being a hospice, they are unbelievably accommodation unlike a private counsellor or NHS counsellor could be.  If I don't turn up for a session, she says not to worry about letting her know, she'll wait half an hour for me.  If I find I'm too ill or too tired after 15 mins - that's fine, I can end the session whenever.  She always rings me during chemo week until she can get hold of me to check my wellbeing and arrange the next appointment, then rings the day before to make sure I'm still OK for it.  Just that level of "we'll sort everything you just turn up if and when you can" is quite calming.

I managed to find some clothes too and then went to get a new bin (broke the touch to open lid on mine) and new kettle (old one leaking, rusty and bloody noisy).  I also decided this is no time to put up with the awful orange pine accessories I inherited in the bathroom and toilet so picked some chrome ones up in the sale at Homebase, together with a pair of lovely wall lights for the conservatory that tie in with the living room pendants.  It must be the daffodils that have started to join the crops of snowdrops in the verge across the road and in my garden.  I am enthused with attempting to do those smaller decorating jobs - I always buy the accessories first, it spurs me on seeing pretty things hidden in boxes.  Took 2 years to get the pendants up in the living room, but I was kinda ill.....and had to scrape wallpaper and paint off the ceiling, fill it, sand it, fill it, sand it, paint it etc.  By the time I got home I was in rather a lot of pain - walking being the most painful, but I was determined once I was out to do everything I needed to do.  I didn't sleep much that night - with regular painful trips to the toilet.

Friday I went to see Dr Tom again - managed not to have a funny turn and nearly pass out this time.  I didn't have my wig on, but I was wearing PINK.  Just in case.  I let him know I WAS still there and I "nearly" ran after him when I heard him thanking the staff for the cake....just in case he thought I was rude pissing off home when he'd agreed to see me.  I told him about my recent leaking and misery and he agreed to ask the surgeons about minimally invasive/low recovery options including my suggestion of bioprosthetics to seal the hole.  From what I've read that could even be done under local anaesthetic and it's not like a bowel resection which needs months of recovery and dangerous for chemo to be administered until the join has healed.  He said it's free to ask but it's obviously making my life miserable.  He examined me and saw for himself how bad the problem was (it was bloody painful, as expected) but at least he won't think I'm exaggerating - not that any amount is acceptable, but it's been so bad I've not wanted to leave the house for long after Thursday.  He also agreed I might as well get my blood done as early as possible on Monday to avoid an overnight stay if I'm neutropenic.  I don't understand why the ward are happy to get me in at 4, then test blood, then wait for results, only to send me home.  I guess they aren't used to people being so badly affected in their white cells as I seem to be.  I think I'll have another 4, making six since my 2 month break and since the base scan I have now including my lungs.  Only then we can work out how fast they're growing/shrinking or if they're just staying the same.  At this rate, if I complete 12 in total - 9 post operation, it will take between 9th June and 28th July if I continue to need 2 weeks to recover instead of one sometimes.

Then FINALLY I should be able to start doing this "living" thing I'm supposed to be doing.  Doing the things "Lisa wants to do" as Dr Tom put it.  I've done very little that I wanted or planned to do since I got diagnosed again in July - that's a whole year of existing, having tests, surgery, hospital admissions, chemo and a whole year of my shortened life spent trying to extend it.  Chemo should take 6 months, I feel rather short changed with all the delays.  However I have been looking into my private work pensions since I got a statement following the transfer from my 9 year employment with Emap/Bauer.  So long as a doctor says I'm expected to live less than 12 months, I should be able to take all of it, tax free.  Which puts me over the penalty free savings limit, however I will pay off my remaining car loan and the repairs to my boiler, car service, the cess pit cover repair (£800) and that should bring me back down nearer the £6k penalty free limit so I won't lose any Income Support.  At least DLA isn't means tested.  I plan to pay for my kids to take driving and bike lessons, hopefully get them set up with a car, tax and insurance within the next year so I know they will have more independence, be able to travel to see me (of course!!) their friends and to any jobs they may be now able to apply for without relying on buses or me.  I'm actually quite excited about being able to do this for them, it's something I couldn't afford to do until I was 32 and even then I put my driving lessons on my credit card and did the same for my first car £950.  Eventually I used remortgage money as I improved the last house to clear those debts, but it had to be done, travelling by train to Peterborough every day, the train breaking down at least twice a month was stressful - getting home at 8pm then catching the 7am train wasn't really my idea of fun.

Living here there is no Sunday bus service, the buses from Spalding to Boston run every hour or two and take an hour to get here, then there's a 2 mile walk.  There aren't many buses after 6pm in either direction.  Going to a neighbouring town or village to even see a local band play isn't possible so what are they supposed to do?  Getting a job outside the bus times or routes isn't an option when you live here either, unless you have your own transport.

My mortgage interest is now being paid in part so I've finally adjusted my monthly payment which will save me just over £100 a month - meaning I can give the kids some money each month, not worry so much about paying for heating oil, buy clothes if I need them (my new wardrobe of things that fit is still rather limited).  I feel I can relax about money properly now, useful since my disintegrating body keeps demanding more and more attention.  I'm EVEN thinking about knocking the bathroom and toilet into one, I know the estate agent said not to bother, people like to have something to do, but I want to stay here as long as I can and it's not hygienic to have a toilet with no sink, no toilet in the bathroom - I have a stoma and I need a nice clean bathroom not a mouldy pair of small cupboards.  I deserve a bath I can actually have a bath in (current 1950s model thick with limescale on the bottom, stained and the taps don't work.  I'd like a fence in the garden to replace the one that was rotting when I moved in.  It looks like I MAY be able to do those things so at least my surroundings are more pleasant and I do think I'll get some of the money back by making those improvements.  Spending £3000 is probably what a move would cost anyway in fees so why not?

Next chemo free week I'm going to tackle my local govt pension and my Geest/Bakkavor pension - see if I can get anything from them.  I may never see a penny of the state pension I've contributed to since I was 18 but I'm damn sure I'm not letting my sensibility of paying in 3, 4 and 5% of my earnings every month go unrewarded.

Ah a final word about the title of this post.  Trying to find out about pouch/vaginal fistulas, or any other sort isn't easy but I did find this distressing link.  It seems obstetric fistulas in women in Africa are pretty common.  One woman spent 2 days pushing, only to then go to the hospital and have her dead baby delivered and spend 15 years having uring leak through her vagina.  Luckily she had an understanding husband but they slept in separate beds after that.  The indignity of any type of incontinence makes lives miserable, but the stigma in places like Africa is much worse. here is where the woman mentioned above gives her account through a translator - there is a foundation giving these women their lives back.

I hope I can get the same outcome myself..........

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.