At some point in the second week, a nurse had to come and remove the iodine soaked wadding in my (we're going to call it my fanjo because it's just nicer OK?) fanjo. So there I am, knees apart on my side while she pulls the end of the bandage material, and pulls....and I wince and cry out at the soreness sometimes when I imagine it's catching on the stitches inside. Every time she'd say "just a little bit more, nearly there, you're doing really well" and I'd carry on taking slow, deep breaths, she kept on pulling...I got an image in my head of her with her white gloves pulling a string of bunting or knotted handkerchiefs like a magician. I managed not to laugh because of the discomfort.
I also spoke to Occupational Therapy and agreed to a bath board/seat, a perch stool for the kitchen and medic alert - a bracelet with an alarm button to dial through, talk to switchboard who would either dispatch someone or contact my named people to gain access. It also sends out the fire brigade if my special smoke alarms are set off (yet to be fitted, but I'm hoping for some nice young fireman, I get so little pleasure in this life now, I deserve something pretty to look at).
I haven't explained my surgery in much detail. I had a loop transverse colostomy last December which kept retracting inside me and joining up allowing waste to pass through the normal route to my j-pouch which replaced my diseased rectum back in 2006. Where the join of bowel tissue to the rectal stump was a hole developed. Bizarrely, instead of leaking waste into my abdominal cavity, it grew a tunnel to my fanjo (no sniggering Withers and Puxty) and then a hole through that so waste could escape. Every time this happened I had contraction like pains low down as it was forced through this 4mm hole which I had no control over - and would have to wear a nappy for. I don't need to point out how risky this is with regard to all sorts of infections. I had sore skin when it was bad, the top layers were stripped off and bleeding raw, again I had to go to the toilet hourly to keep it clean and prevent infection, unable to walk when I had a contraction.
The solution was agreed as a belt and braces approach, at my request. The stoma was converted to an end stoma so there was no way anything could get out any other way other than the stoma. The second operation was very complicated and so rare one of the registrars told me how privileged he was to see it as it's one he would only normally read about in text books. The thought of all these consultants and doctors peering at my bits was a little off putting, but I'm used to it now.
It took all morning to sew up the fistula from my vaginal canal and then take a slice of tissue like a skin graft and place it over the fistula like a patch. It took so long because obviously he was working with long instruments in a very narrow space. He injected a lot of local anaesthetic in there so I actually never felt any pain ever in that site. The pain was anywhere but. Except when the wadding was removed.
So, back to my stay:
Another weekend in hospital, my son visited on the Saturday for a little over the 2 hours, but nobody noticed. I ordered him a new helmet, since his was several years old and had been dropped so unsafe. He was really looking forward to it arriving - it being half term he would be able to wait in for it.
Mon 24th Oct
My favourite stoma nurse came to put glycerin suppositories in my stoma, which involved putting a gloved finger inside my intestine and having a bit of a rummage to feel the blockage which was pretty hard. One came out straight away but she stood there like the dutch boy and the dam holding her finger in until it looked like it would stay. Carla went home so she could be with her babies, still in as much pain as when she came in, still with no answer and I really felt for her knowing how I felt when I was trying to get someone to listen. She is sure it's a gall bladder problem, a relative has died from it. Naturally she is terrified and wants to be well and look after her children. Her and Coral made my stay almost pleasurable while they were in and I've been in touch with both since I left.
In her place I couldn't help noticing a young woman with a Colostomy box, she was probably getting here first stoma. After a while I quietly mentioned I was on my third stoma and if she wanted to talk or ask any questions I'd be happy to help. We did have a chat and a few tears and a hug about the fears any woman has about her body and potential rejection especially at her age. I'm glad I was able to assure her that even I, in my late thirties recovering from cancer had managed to have a physical relationship with my stoma and it was never an issue. In fact, I told her, it would help sort the wheat from the chaff because it would quickly put off the idiots she shouldn't be with and the decent ones wouldn't care, they would see how courageous she was for what she'd been through and how strong she was, that yes, she should be very proud of herself. Her stoma was a day older than mine but had an abscess which had to be cut out in theatre.
Tue 25th Oct
Jane drove over from Derbyshire for a 2 hour visit with my mum and her husband then had to drive back in a wicked storm - I was enjoying it from my bed but Jane wasn't enjoying it from her car....
My new roomy was sick, from the anaesthetic and the healthcare on was an uncommunicative ignorant waste of space who 3 times took her BP from the cannulated arm which led to her IV fluid leaking all over her bed as it pushed the line out. Making her even more dehydrated. I heard her and rushed (as fast as a tortoise given my situation, hobbling round the bed, to give her my spare bowl. It was on her sheets, then later the blanket and her bedding had to be changed twice. I felt so sorry for her, just a couple of years older than my daughter. We talked about things when she wanted to.
Wed 26 Oct
I really thought I was going home today. Phoenix was up early and to my house in time to wait for his helmet, mum had driven over to wait in for my OT equipment. I rang Phoenix after it arrived and he was practically jumping around shouting "it's awesome". He likes it.
Stoma nurse came with more suppositories and a lubed, gloved finger. It was shrinking but Dr felt I should wait another day. I said I was getting to the point where I wanted to stick tweezers in there and get it out myself. He said they could try forceps but it could be very painful. They'd decided against putting a tube in and doing an enema since the suppositories were the most gentle way and were working slowly.
Thu 27th Oct
Today Dr Al rummaged around a lot inside and madc me feel quite ill and my insides ached for a few hours. He was trying to shift what was left of the blockage. He put some more suppositories in and said I could go home. I really wanted to sleep but was told my bed was needed at 1pm. Now when I came in at 3, I had to wait hours before my bed was free and I was in pain at the time. So again, I would have to sit in even more pain in an upright chair for hours. Mum and Karys were coming at 2 then I'd have to wait for my discharge letter and drugs. After I took my bags to the day room, I went back to say goodbye to the Old lady I nicknamed Jacko because she kept putting a sheet over her head. I asked her not to give up, told her I had a stoma too (she told me she'd had one, which I'd worked out) and held her hand, begged her to try eating more food. I have a feeling she's made her decision. Her husband died a few months ago and the surgery has knocked her down, made her depressed. My young roomy waited with me and we talked some more. She paid me the biggest compliment by saying she was really glad she'd met me. I had written some sites down and a few tips that the stoma team don't always remember to tell you, or tell you when a problem occurs, but forewarned is forearmed. We were both a bit teary when we said goodbye.
It's funny how I met three lovely people being in a place I don't like being in. Maybe if they allowed mixed wards......OK maybe not.
I spent a few hours with Karys talking grown up stuff about my will and the house and things I'm not ready for but had to. I'd already had the conversation with her brother at the weekend. They seem to be so sensible about things but insistent it will be years yet....I wish I could honestly agree with them.
My CEA is trebled in two months. The tumours had doubled in two months in my liver prior to that. I have been mildly wheezy with an annoying cough that isn't clearing anything since just before I went for surgery. I'm not an idiot, I know the delay in getting back to chemo has let it run rampant growing wherever it wants. I had no choice. What life is having chemo in hospital for five days then 2 to 5 days leaking faeces through my fanjo? It wasn't my fault the surgery was delayed, I'd have been on chemo by now if that had happened. I can only hope this delay hasn't meant I've left it too late. I'm seeing a mortgage advisor this week (god knows how I'll manage driving) and then will see my solicitor. At least if I get things in place now, if anything goes wrong on the chemo, the kids will be OK.
Tofu Red Lentil Shakshuka
2 days ago