As you'll know if you've been reading for a while, I spend 5 days every other week in hospital receiving chemo, food and water (and a clean bed every day). This is because after 3 sessions at full dose of Evil Irene back in Oct/Nov last year I was admitted via A&E neutropenic, in pain and terrified because "my insides were all wrong" to quote Tubs from League of Gentlemen. Once I was well enough I had surgery to create a permanent stoma, thereby preventing all waste from escaping through the tunnel that had formed from my J-pouch (make do rectum created with some of my remaining colon) and vaginal wall. After 2 months recovery chemo started again, from scratch after a full chest/abdominal CT to properly measure the effectiveness on my lung and liver squatters. My mind associated chemo with emergency admissions and I almost refused my first chemo post op. I was right to fear it, because it happened. The stoma keeps retracting inside me and joining up again sending it all down the wrong route again. This is accompanied by agonising spasms as it all tries to get through a tiny tube, which nobody in their right mind would design, about every 20 - 60 minutes. Everything is quite liquid, there is no control and I have to change padding at least every 2 hours. As you can imagine if you left a baby in a soiled nappy all day and night for a week or two the effects on its skin would be quite horrendous. It's no different as an adult.
So, realising it was the antisickness drugs causing constipation which made retraction likely, I started taking Movicol morning and night and agreed to continue chemo on the condition I did so as an in patient. Not just for my fears of recurrence of this disgusting nightmare but because I just sleep for 3 days and nights and can't get up to get drinks or food, let alone decide what I want to eat (nothing). So, after another two, the nightmare starts again, during my week off on the Wednesday afternoon. Five days later, back to "normal" and passing waste through a hole in my belly. Awesome. More chemo. Yet again, Wednesday afternoon it all started again - ruining my week off chemo. Then "luckily" my white cells took a two week dive so I had a gloriously hot two weeks holed up on the old blue squashy sofa in the conservatory, doors and windows thrown open listening to the birds, and just smiling at the greenery and big skies, making more jewellery as if it were my actual job.
Making the bracelets (and a few necklaces) and treating it like a job makes me feel like I have some sort of purpose. I'm not pushing it, it's a glorified hobby but 3 people have bought from me so far, and I've made personal gifts to a couple of friends. My son has 2 necklaces now (man colours obviously) which he told me he wears every day since I gave him the first one shortly after we were reunited, hidden under his school shirt. My daughter has a bracelet which she chose the beads and colours for. It's a little bit of me they can keep.
Anway, if you'd like to have a look at most of what I've done - some I'm going to keep to sell at other people's craft fairs, not being fit enough to attend any myself, here is the link:
and if you're on Facebook:
Everything on Wowthankyou includes P&P which includes a plain organza bag inside a jiffy bag (awaiting delivery STILL from Staples). Payment via paypal because that's how I pay for all my beads and thread and findings so I might one day recoup what I've spent, if not, I've still had hours of being productive and creative and it's a sort of meditation for me. Sometimes I find it hard to use the prettiest beads (you have NO idea how many amazing beads there are to be had). I'm also planning, when the blue thread arrives from China IF it ever does - don't usually have issues with Chinese shipping - to make Beating Bowel Cancer some bracelets to have at events for people to take for a donation to raise funds. I have some fine blue thread at the moment if any of my fellow BC patients would like one and some silver coloured hope or plain ribbons (just ask). I've also landed up with a lot of paler blue enamelled ribbons which are really the colour for prostate cancer. I'm sick of seeing pink everywhere as if it's the only cancer yet MY cancer which kills many more people is unheard of. I want to see other colours out there - specifically BLUE. More and more young people are getting bowel cancer (and I'm convinced it's down to lifestyle and poor diet). I raised my two on organic veg from my own garden, pureed meals and froze them instead of wasting money on glass jars of baby food. I also used terry nappies and breastfed them for 7 months. (Seriously I did that from 21 and knitted/sewed clothes, made curtains, it's like another person's life memories, doesn't feel like me) The thought of them going through half of what I have makes me sick and hurts when I think about it but at least they have an awareness. If only I could get my son to eat more veg now! So BLUE awareness bracelets are going to be my contribution...as I said when my thick blue thread arrives. It has to be the thicker stuff so I can make them quicker, in case you were wondering.
Back to cancer (small c, it's not big and it's not fucking clever, why the "BIG" c, giving it ideas above its station hmm?). Last week I had my 6th post op, 9th this lot of chemo. Time for a scan in the next two weeks, also the MDT agreed to my request for a fistula plug, I'm hoping it's the bioprosthetic one since my research tells me it has good results. I may also ask my lovely surgeon, Mr A, to redo Mr R's stoma. He said he's happy to do it if I can't cope with the constant retraction (it's so retracted the last few days I'm losing a mm of skin every day to the acids because how do you stick a flange, albeit slightly convex (I can hear Debs and Katie snorting at the word, memories of Mac Forum days eh girls?) to a bloody funnel? You don't. I know there are deeper convex bags available so if things don't improve I'll go back to my lovely stoma nurses and ask for a few more samples before submitting myself for more surgery.
I have to go to Leeds for my fistula repair, Mr A wasn't even aware of such a procedure. Now if he doesn't know that means it's VERY rare. All the research papers I've found were American so I'm guessing it's pretty specialised shizzle. For those interested it's a plug of pig tissue, which is very close to human tissue (remember heart transplant from a pig?) which is sewn in to the fistula and eventually grows into the space creating a permanent seal. Hopefully, when my stupid (not at all fat by any means any more, serves me right calling it Fatty Arbuckle) stoma disappears I'll just go to the loo like a normal person for a few days and have that all important control. I haven't yet got a date, but they expect it'll be shortly so I need to get fit for that and hope my bloods are sufficiently recovered. Not as soon as the next two weeks then hopefully. Maurice has very kindly volunteered to ferry me up there. I'm quite looking forward to the whole adventure, not least being rid of this major problem of course, but I'm told Leeds hospital is a nice place to be.
Onco Dr Tom popped in to see me on the ward on Friday and we had a chat as follows:
Me: Hello! Not seen you for a while.
Tom: I've not been avoiding you *shakes my hand, sits on bed*
Me: I've been avoiding you.......*laughs*
Tom: You don't have to have my horrible treatments you know, you look much better than when you were in room 6 last time I visited you on the ward, how are things, has the chemo made the pain any better?
Me: Um, I just had my pain meds increased 25% this week *sad face*
Tom: Oh! Hm. Well your tumour markers are down, but it's not about how your markers look on my chart is it, are you getting any benefit from this treatment?
Me: No, just pain, side effects and spending half my life here, and hopefully some shrinkage of tumours that weren't actually causing me any pain obviously.
Tom: Well, we'll see what the scan says but if it's not improving your life maybe it's time to stop so you can have some quality of life back.
Me: YES, I'm pretty much at that point, and I have my fistula repair coming up soon
and then followed discussion about being fit enough bloodwise for surgery - ie, must be above 1.5 on the old white soldier cells so definitely stop chemo for now until scan and surgery done regardless of scan results.
And to celebrate I had two of my lovely BBs over for another weekend of coffee table picnics (provided via old lady shopping trolly (Katie), a munich taxi (Katie's car) and naughty Baby (Deb's car). Having the excuse of being ill, for the third time I spent the weekend being made copious amounts of YT, being fed food which I neither prepared, nor cooked, having a pedicure, my hair henna'd (looks SO much thicker when I catch sight of myself in the mirror, but my grey is now orange, far too much orange for my liking meh). The kitchen was cleaner than when they arrived and I still have food left to eat up. Pampering aside, we just always find stuff to talk about, these former strangers living in Manchester and Kent who I'd never have met if I'd not got cancer, so there is my silver lining. My only repayment was a pirate necklace for Lady D (she's more obsessed with Mr Depp than I am and quite giddy about this week's new film) and a glittery silver and green bracelet (and anklet by accicent cos first one was 1cm too long) for Glittergirl. (Hilarious back story as to how she got HER nickname, but I couldn't possibly divulge). Glittergirl AKA Faerie/Katie also came with a lip plaster, balaclava, degradable plastic cutlery, her own mug and wine glass (for pink bubbles in memory of Bec and Peter) and pillow case - and that old lady shopping bag I realised she left here - because she had her 3rd ever cold sore. Bless. When Baby and Lady D tried to leave, realising Baby's driver door handle won't work till next week, after a garage visit, I had to get the shears out (in dressing gown and slippers) to cut our way through to the passenger side.
I think that's about it, I should tell you some of the stories about the weird patients I endured in the bay but I'm probably due some food again (such a bind, eating). So, hope everyone else is doing OK and I'll catch up on your blogs soon.
Weekend Reading, 7.15.18
2 days ago