I got a phone call on the morning of 29th June, but as I'd been awake till 4am again and my phone was on silent I didn't notice until lunch time. It was from my older sister in Derbyshire who I hadn't heard from since January. I returned the call after seeing a text asking how I was and that she needed to talk to me. Given the consistent lack of contact I didn't think she had anything good to say or really cared how I was. When she rang back in tears she told me my dad had died - I'd rung at the "wrong time" and missed it all. She was there, with his other daughter and wife. I wasn't even aware he was ill, I hadn't been told he had cancer or that he'd been admitted to hospital the night before. And now it was all too late. My initial reaction was one of anger. She said she'd not told me because I'm ill. Later I was told it was my dad's wish I wasn't told, because I'm ill. I don't understand the logic there since I will NEVER not be ill? So they were never going to tell me, or even suggest strongly that I visit my dad and find out for myself? The funeral was on Monday but I haven't been able to answer any calls from my sister since then and certainly couldn't bring myself to be the outsider at my own father's funeral. I've never been part of their family, my daughter never gets birthday cards or presents from her grandfather, yet my son did. I have no idea why he singled her out but when she was born he didn't visit, when my son was born he did and he was SO upset at my two boys being stillborn so clearly he thinks only boys are worthy of his attention despite having fathered three girls? Who knows, I've lost the chance to ask now anyway.
I had an email from the woman my ex "didn't have an affair with" but married. She said we'd never met but had heard about each other some time ago (no shit, I read the texts the man I lived with sent to her) and she'd come across the Gerson therapies. Since he'd been so affected by my diagnosis when he heard 4 years ago she'd remembered my name and searched for my email and finally found it. I was so upset by it, he was the one I wanted to be with and it took me years to get over him leaving me the way he did, my son was upset too, they'd grown close and he bought my son his first guitar. The only relationship I had after him lasted 10 months and ended when I got ill. I couldn't help reply to her "he only told me a tiny bit about you" by asking if he'd told her how he broke my heart by leaving us for her and that I suffered a breakdown when he met her. I didn't expand, all the lies, convincing me I was imagining it then finally finding the proof when he left his phone unattended. She's not come back to me. I'm not sure she even realised I'm more than a "friend, that we lived together - he told me enough lies so no doubt he told her a few.
Yesterday I got up at 6 after a couple of hours sleep and drove to Nottingham QMC to see Mr Armitage, who my surgeon had referred me to for expert opinion on my unique situation. A junior Dr called Tom took my history and then they were both present for examinations (painful, too painful for a DRE - since it's been out of action for 9 months it's closed up) the vaginal exam was also painful but he could see the fistula with a camera. From what he described it must have closed up in the last two months I've been off chemo or it really explains the agony of everything being forced through such a narrow tube. He said I have three options:
1) do nothing - not really an option since the pain in my week off chemo is part of the reason I needed a break
2) have a fistula plug/direct repair - plug not recommended for the short fistula I have since there's not much to keep it in place and likely to fall out - he has also never performed such surgery
3) have the stoma refashioned and seal off the distal end so nothing can connect up any more, I'll still have mucous escaping through the fistula however as I do now.
I added option 4) fistula repair AND stoma refashioned
He said he'll talk to Mr A and write of course. Mr Armitage has retired from NHS but does mentoring still and would be happy to come over to Boston if possible or Nottingham if not but won't be able to arrange anything before September when I expect to be restarting chemo again. The thought of having to go through the whole 2 week cycle of feeling so ill then a week of pain doesn't thrill me and I'm disappointed things have taken so long to sort out. I've been in this situation since January when we realised the stoma hadn't solved the problem and is essentially a waste of time and now I'm stuck with the stupid thing for the rest of my life - there's no way they'll repair the fistula and put me through another reversal with the risks of more pelvic damage from radiation.
I've had my Fentanyl patches increased yet again to 75mcg/hr and still it makes no difference, I hope I'm not in as much pain as I'd be with no patches at all but some nights it hard to believe. As soon as I lie down the pain starts, it's there when I finally fall asleep on my right side, the least painful, and there when I wake up and only stops when I get up. Even driving in my slightly horizontal position in Izzy hurts for the first 30 minutes of driving anywhere but it does wear off. I'm so used to the pain now it doesn't upset me it's just part of life and I wonder what the point of going back to the GP is, they'll just try more pain relief but there is nothing stronger than Fentanyl. Unless my pain has changed and I need a different type of drug, or have I just become immune to the Fentanyl? If they'd just go in and have a look and scrape away some scar tissue (my theory) maybe things would improve but I can't find anyone interested in pursuing that.
It's not all been doom and gloom, Maurice and Sue spent two Sundays sorting the garden out and strimming the no mans land between my garden and the field of crops - result, I have a lawn not a field and my garden looks twice the size behind the conservatory. It was much more fun having company in the garden than trying to tackle it myself. Now I'm on top of things a bit more it should be easier to cope with for the rest of the summer. They also took me to see their daughter in Oliver. I'm not a fan of musicals generally except Oliver and The King & I (Yul Bryner original because he's fit, don't ask me why, I just like him in that film!). It wasn't too bad sitting in a chair for over 2 hours which I'd been most worried about - being so engaged by the performance. I got a bit teary when Charlotte did her solo "As Long As He Needs Me" not as much as her mum obviously. Even so I was worn out afterwards and had to have a kip when I got home which makes me feel a bit crappy when I think what I was capable of just over a year ago.
Weekend Reading, 7.16.17
6 days ago