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.
http://www.fistulacare.org/pages/in-action/stories/digital-stories.php 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..........
Weekend Reading, 7.15.18
2 days ago