Thought I'd better put something here now I'm up and able again, finally.
The bridge came out on Monday, painlesslye, shortly after which, Fatty Arbuckle decided it would be a good time to start reminding me how to empty a bag, instead of just looking at it wondering if there was any point having one stuck there, doing nothing.
He's been operating very well ever since I'm happy to say. Who'd have thought I'd be pleased to have a permanent, huge, ugly stoma in the middle of my belly rendering some of the nice new (now roomy) size 10 clothes I bought useless. The "horror" of the painful chemo weeks is almost just a memory. The hair on my legs, though sparse and patchy continues to grow back - WHY? The hair on my head is falling out more slowly and I think I see fluffy new baby hairs at my fringe - or this could just be where hair has snapped off, but my hair is so sparse, with bald patches above my ears it won't take many more sessions before it's all gone, or needs shaving. I should get the length cut now but really can't be bothered to organise that. I was too weak the Saturday after surgery for the booked appointment I had, I couldn't sit up in a chair long enough so missed that opportunity.
Mum and Peter came to visit on Saturday and brought food with them and stayed for several hours. I didn't really want to be left alone, after having company all day, but I was tired. Karys came on Sunday and Beckie and we watched some Peter Kay which luckily didn't cause too much pain, but I did spend most of it with a nervous hand over Fatty holding everything in. For Karys that meant a bus ride and then a 2 mile walk in frozen snow :o( and made me feel crap that I wasn't able to go and pick her up from the bus stop but she didn't need to walk back at least, getting a lift from Aunty.
Monday Mike came after I got back from having the bridge out - and having a look at diffrent bags - things don't seem to have changed that much to be honest in the 3 years without a stoma.
I said to sis "it's not really as much fun as shoe shopping is it?" as Sarah got different boxes down for me to look at. In the end, because the stoma is about 3 times bigger than my last one, I opted for a two piece - the output is thicker so it's nice to be able to change the bag and clean things properly every day without ripping glue off my belly every day. The Salts base plate I'm trying has an extra large flange (stifles giggles at the word flange STILL) made of a sort of fabric, like micropore tape almost but more webbed and there's no way it's moving but makes me feel I've got extra protection against a hernia. The Salts bags are still as noisy as wearing Walkers crisps packets and I really don't like the closure compared to my old faithful one piece but once Fatty has shrunk back enough to use a smaller size I'm sure I'll go back to those.
I got sent some samples of the tiniest closed bags I've ever seen, lord knows how I'm supposed to get one of those round Fatty, they got my address so horrendously wrong (over the phone order by hospital) wrong, including the road name, village and postcode. Fair play to Royal Mail for finding me! They do have a nice flat top which protrudes less under clothing. I think I might go back to my old trick of cutting down a tight fitting lyra vest to wear like a corset to flatten everything down under my other clothes. It tends to smooth things out and make less clothes redundant. I don't care that people know I have a stoma, but who wants to look anything other than normal with flattering clothes?
Nothing has moved from the redundant portion of descending colon and j-pouch - which is good, physically, but psychologically, I know it's there and at some point they'll have to put a tube into the mucus side of my stoma and flush it out - Sarah says I'll need to be "quite strong and well" to go through that process as it will cause cramping....naively I'd thought I'd have an enema...but thinking about it they are hell so I'm not so bothered about waiting. I asked why on earth they hadn't given me bowel prep since it was planned surgery. She said she didn't think I'd have been able to cope with even bowel prep, I was just too ill and weak. It choked me a bit to think that after all the preps I've had over the last 4 years that I was so ill, it was a better option to leave the waste inside? I don't think I ever thought I was in real danger at the time, I was too exhausted and upset most of the time. Probably just as well?
My usual district nurse came to see me on Thursday and sorted out my repeat prescription for HRT and my "crack" patches, I'm alright for crack lollies - don't like using those. She's going to chase up my referral to the hospice after Christmas and I really hope they'll be able to help with the pain. Thursday night some friends came over and brought a stack of DVDs to watch so I don't think even festive TV will get to me, entertainment wise I've plenty to keep me occupied. I've had quite a few phone calls too which break the day up a bit, even though I've not much to tell, it makes the days a little brighter.
Yesterday - Friday, finally time to take the two sutures out (I still can see some white dissolving ones but they don't seem to be causing a problem at the moment). Sarah had warned me to take some pain relief, which I forgot. As it turned out I didn't feel a thing! Either the Fentanyl works for stitch removal or the peristomal skin has no feeling, either way I was thrilled. The horrible snatching sound the stitches make against the tiny curved scalpel is horrible, a bit like nails on a chalkboard, I really don't like it, every time it slips and doesn't cut through. Obviously Fatty, being a delicate thing, bled a bit just at the slightest touch of the plastic tweezers, despite my efforts to cover and protect him with a dry wipe - pathetic show on his part I thought. So I'm stocked up with more base plates and bags for over Christmas and New Year and we'll hope for more shrinkage. For underclothing bulges, less is more. What's the point in being a size 8-10 at 40 and not being able to make the most of looking like a stick?
So that's where I'm at. Started back on taking my usual vitamins and supplements (B complex, selenium, choline inositol, fish oils, CQ10, I think that's about it....) this week and also managed to cook some nut loaf which was SO tasty I kept picking at it all evening and spent a night awake emptying air out of the bag - Fatty was in shock at the volume of food and me eating brocolli. Subsequent meals haven't produced as much air so hopefully I'll be able to increase the "windy" veg without too much drama. I'm still on a very basic bread, soup, crumpets, fruit, mash diet but starting to increase veg now things are working properly. Fibre means - shorter nights, fuller bags and many trips to the toilet, veg means health. It's a case of weaning slowly and eating whatever I fancy still, but I think I felt hungry yesterday - bit weird, not had that sensation for months and months, but I took notice and kept eating.
Congratulations to Tony for passing his bike test and to Carole for getting her stitches out.
I can't have a bath since it's so horribly scale damaged it's not been connected to water when I had central heating installed (bathroom revamp was due but cancer got in the way) so it's just a large shower tray. I quite fancy a large bubble bath myself (with stupid plastic bath guard on my arm of course) it's less effort than standing!
Weekend Reading, 7.15.18
2 days ago