Monthly Archives: July 2014

Wow. I hadn’t realised it had been so long since I last posted. Lots has happened. The not wearing the leg-bag thing has worked out okay for me. I have sore patches on my back from where one of my nurses didn’t dry my skin before placing the stoma bags on one time, but I’m hoping over time that can get better and heal and I won’t be all itchy forever. My energy levels are back to more or less normal. So is my eating, more or less. I still don’t eat as much as I used to, I don’t know if I ever will get back to that level – but I’m thinking maybe that’s not such a bad thing at the same time. Also, the depression I’ve been caught up in has lifted. I’ve been able to get up out of bed, I’ve been able to enjoy things again, I’ve been able to have a life again as opposed to just being alive. All good.

People are starting to treat me like a normal person again. That’s one thing I’ve noticed recently. Maybe I’m acting differently? I don’t know. Maybe I just look normal. After the op and the not eating, I ended up losing a total of 21Kg. That’s about 3st or something I think. A lot. Nothing I wore fit. Trousers would literally fall off me. Tops felt like tents. I’ve never been in that position before. It’s always been the other way for me, since I was at school. I had a fear at first that I’d start liking being stupidly thin, and that that would add to my eating disorder, but no, I like eating far too much now I’ve started to be able to again. I suspect I’ve put on some of the weight that I lost. I’m just going to have to pick up on the exercise thing if I want to carry on fitting into the new clothes I’ve had to buy the last few weeks since I realised I was wearing two sizes too big.

I’m even thinking about going back to work again now. I hated work. I probably still will when I go back and I’ll lament all of this time that I’ve had off from the place doing not a lot. At the same time, I think it’ll be good for me to get out of the house and see normal people and live normally for a while.

I’m still waiting on results. I had an Examination Under Anaesthetic last month and they took a biopsy then from my bowel. I also had a CT scan and an MRI. The two scans have come back with nothing for the oncologists to worry about, though there is some oedema in the vault left by the hysterectomy, and my bowel has drifted south and stuck itself to scar tissue. I’m waiting on the results of the biopsy, and I’m waiting for my next set of appointments to see what’s going on with the bowel specialist, but that will happen at the same MDT where they’ll discuss my poor excuse for a bladder. Since having the nephrostomies fitted, one of my ureters has, I don’t know, closed up or disappeared altogether – they couldn’t find it with their camera when they were doing the cystoscopy. The other one is okay, and I could possibly have had one neph tube removed if it wasn’t for the fact that my bladder has shrunk to tiny proportions and now only holds 90ml when full. So unless they decide to build me a new bladder from my bowels (not likely, I’m pretty sure that has been damaged by the radiotherapy too) I’m going to be stuck with the bilateral nephrostomy tubes forever. They may do a diversion and give me a urostomy, but that’s another operation and to be perfectly honest, I’m terrified of having to go back into the hospital again.

For now, I’m reasonably happy, still trying to come to terms with the schrodinger’s cat status of my cancer, of having cells that may or may not grow another tumour, but not letting it drag me under.