I met a friend in the street this morning who asked if I was drinking aloe vera gel when I took my medication ‘to counteract the toxins’. No, why should I? Aloe vera tastes disgusting, whereas morphine syrup is really rather delicious. And anyway, I’m not convinced that I need to take something of dubious benefit. I know that it has anti-inflammatory and laxative properties (something I don’t need right now) and aloe vera gel contains a lot of fibre (something else I don’t need), but it’s not for me. Although it is touted a lot by the companies that sell it, there is very little scientific research on its benefits in humans. That said, I did use an enhanced aloe vera gel on my skin when I had radiotherapy, and credit it with saving my skin from radiotherapy burns. But taking it internally is a different story.
I also had a text from another friend telling me about a certain treatment (the ketogenic diet and hyperbaric oxygen therapy) that others have credited with shrinking their cancers. The trouble with this sort of thing is that, although it may have been of benefit to others, it may not be for me. I suspect that my cancer is too far gone now for these therapies to have much effect. Whilst they may be able to shrink secondaries, neither of these agents is going to be able to rebuild the fistula. Also the therapies either take place a long way from home or require considerable input from the patient. And I am very tired now.
So… John and I went to the local hospital yesterday where I had appointments both with the surgeon and with the oncologist. The oncologist, a registrar, was a waste of time. Firstly, he had no notes from the Christie. These hospitals simply don’t communicate with one another, so the poor patient spends half the consultation reciting their medical history. It’s a ridiculous situation. Secondly, there was no real reason to see him. Oncologists exist to treat, either with chemo or with radiotherapy. I can’t have any more radiotherapy and I don’t want any more chemo, so I’m a lost cause as far as they are concerned. I had thought that it might be a good idea to have an oncologist overseeing my case, but we ended up agreeing that I would only see him, or the consultant, on an ad hoc basis, as and when I wanted to.
The surgeon, on the other hand, was very kind and helpful. He confirmed that I had a fistula, but before being able to ascertain whether he can perform an ileostomy, he needs another CT scan. So more waiting, then, and of course he didn’t have a copy of my last scan from Christies. The new scan will probably take place within the next week or so, and hopefully I can have the surgery during the month of March. There is a complication, however, which had been mentioned to me by the hospice doctor, and that is that if they find there is a lot of disease around the site where the ileostomy would be located, they may be unable to do it. In that case there is no alternative, and I would simply have to live with the situation as it is now, which is very difficult.
So I’ve been clearing my diary. I had been due to go on a refresher mindfulness course, which is taking place weekly in the evenings. Since it’s far from home I’d booked to stay in a hotel. But I have now undone these arrangements. Not only might I be in hospital, but I’m just too tired to take part in any activity in the evenings. We had already cancelled our February treat, which would have taken place this week, and will probably have to cancel the March one too (a visit to relatives in the south east, towards the end of the month). I’m finding it very hard to accept the limitations imposed on my life now, and feel quite depressed about it.
On the bright side, as a result of an email I sent to my nearest and dearest, detailing, amongst other things, how they could visit without involving us in too much work, we have many visitors lined up for short visits, which is really lovely. I can see that I will be making a lot of cakes! I’m very touched that so many people have chosen to come and see us, even though we live in the middle of nowhere. So I must shake myself out of my depression and enjoy their company.
