It’s been a long time since my last blog post, for lots of reasons, mostly because I’ve been feeling pretty ill and just not up to doing anything much at all. I realised a few days ago that my days mostly consist of sleeping, and when I am awake I’m taking care of the consequences of my illness. And that’s about it. But I must make an effort on the days when I feel a bit better to keep up with all the kind people who make enquiries about me. So here goes.
I did, in fact, get an MRI very quickly after complaining about having to wait some more. That was on a Friday. On the following Monday evening I had a call from the colorectal nurse to say that they will go ahead with a colostomy on 12th May. Now, there are two things wrong with this statement as far as I’m concerned. a) why a colostomy when all along they’ve been talking about an ileostomy? b) 12th May is a heck of a way off if you’re in pain and discomfort all the time. The nurse did try to reassure me on both points. A colostomy involves a dry stoma which is much better, and they didn’t plan an ileostomy as there was no small bowel involvement. I don’t understand this: my discharge is liquid, and all along I’ve been told that this is because the fistula is invading the vagina from the small bowel. It’s all rather confusing. I was told that this would all be discussed at the pre-op, and also that dates change all the time and it was quite likely that I would get an earlier date than that quoted. I should hope so!
So back to waiting. I have arranged things so that I have a visit from at least one friend per day. My Wednesday friend gave me a good talking to! ‘For heaven’s sake, Jane’, she said, ‘why don’t you go private? You can afford it, after all’. I was shocked. I have never even thought about going private. I suppose that, being a strong supporter of the NHS, I just feel it’s somehow wrong to jump the queue. After all, I would be under the same surgeon as if I stuck with the NHS, but would save three weeks waiting time. And I would get an outpatient appointment with him first, which would give me the opportunity to ask all the questions I have. Before my friend left that afternoon she made me promise to call the local private hospital and at least get a quote for a stoma. Well, I did so, and there and then was offered a date for the outpatient appointment and a date a week later (in mid-April) for the colostomy. I don’t actually have a quotation for the colostomy yet, as apparently this takes some time, but I have a rough idea.
Well, I’m afraid it’s no contest. I shall go private unless the NHS can offer me an earlier date than the private hospital can, which I doubt, what with Easter getting in the way. Last Tuesday I went to the day hospice as usual and spoke to the sister there. She said that she and her colleagues ‘had some concerns’ about me. I thought this was a brilliant phrase, and asked her to call the surgeon’s secretary to see if I could get bumped up the queue, using this phrase. It didn’t quite work, because the person she needed to convince was not there, but we shall see. So I now have two avenues of approach: private and NHS. I will probably opt for the first.
I mentioned above that I’ve been feeling too unwell to post. In fact I’ve been too unwell to do anything at all. And last Sunday we had a very special mindfulness day (in addition to our monthly mindfulness mornings), led by a real Buddhist monk who lives in the community of Plum Village established by Thich Nhat Hanh (hope I’ve spelt that right). I was very concerned that I would not be able to go, or if I went I wouldn’t be able to last the day. In fact I managed everything except the mindful movement and walking meditation, when I just sat on a pile of logs while the others did their thing. It was a larger gathering than usual, and therefore took place in a village hall and an adjacent field. But village halls around here have magnificent settings, and this one was no exception, with fabulous views over the countryside to the west. The day followed the usual pattern, but the best bit was the talk given by the monk, Brother Ben. I just wish someone had recorded it, as my memory is so poor. The advice I remembered to take away with me was that every night when we go to bed we should think of three things to be grateful for. I have tried to do this since, and there is always something to be grateful for. He also talked about the three hundred year hug reserved for one’s special partner or loved one. Now, I can’t remember anything else about this, and I haven’t found it on google, so it may have been Brother Ben’s own idea. But I love the idea of tapping into a 300 year old hug at any time. I came home afterwards and gave John a huge hug without explaining why!
It struck me also that Brother Ben had the most wonderful ‘presence’. He appeared to exude joy and happiness even though what we were doing was nothing very much. He smiled all the time, incidentally showing off a fantastic set of teeth! It made one feel ‘I want some of what he’s got’ (not the teeth, but rather his apparent joy in being alive. It was contagious).
And I definitely need some of that joy. I have hit rock-bottom on the energy graph. It’s not an easy path that I have chosen (or rather, as John has just pointed out, that was chosen for me). I thought it would be easier than chemotherapy. Perhaps it is, but it’s certainly no walk in the park. As well as everything else, my voice seems to be going. It’s already very feeble, which makes it hard for me to make myself heard and understood. Why would this happen, I wonder? I have no appetite which doesn’t help the lack of energy. I just have no interest in food, no interest in anything, really. I can’t imagine that having a colostomy is going to ‘cure’ all that. It can only help relieve some of the unpleasant side-effects, but I guess that the rest of it – the tiredness etc – will remain. More on this next time, but it might be a while.
