In case you didn’t see my comment attached to the previous blog post, I would like to thank all those who have commented so kindly on what I write. I am very touched by the support I am receiving here, especially from the other ladies in the AC group. Some have said that I’m ‘an inspiration’: I can’t say that I recognise myself in that description, but if I do inspire others that can only be a positive thing. I simply say it like it is. Now, I must warn you that this is going to be an even more frank post than usual. I am very open about what’s happening to me because a lot of the time I feel as though I’m making my way in the dark, and I’m hoping that it might be helpful for others on the same path to know how I handled the situation, and how I found my way through the dark places.
Yesterday was one of the highlights of the month for me: an emergence out of the dark places into the light of the mid-Wales hills: the monthly meditation group met at a cottage high up where the snow still obstinately stuck in patches in spite of the bright sunshine. Everything sparkled. My dear friend J who was staying with us for the weekend came along too, which was lovely for me. We did some sitting meditation inside, and then later moved outside for walking meditation and mindful movement. The morning finishes with the mindful eating of a vegetarian meal. For ten minutes we eat without speaking, and it’s amazing how just this simple exercise can concentrate your attention on the food – its texture, its taste, its appearance. Those meals always taste wonderful to me.
So that was the best day in recent times. And what was the worst? Well, I suppose it was the day when I finally had to face up to the fact that I’m incontinent. It’s such a hard word to say, and an even harder word to live with. My incontinence is not just what you might think, but also as a result of the fistula between my bowel and my vagina, so that material from one leaks into the other. I’m sorry to be so graphic, but how else can I describe it? I had absolutely no idea that anything like this would be part of my cancer journey, but there it is, and I must deal with it.
So what did I do about it? In my ignorance, I thought the whole problem would be handled quickly and discreetly by others, and I suppose in a way it has, but if I hadn’t been proactive I would not have accessed the pretty inadequate help I have managed to find. I think that part of the problem is that I live in Wales, but that our GP’s surgery, and therefore all our healthcare, is in England. The district nurse came to visit last week and undertook an incontinence assessment, which I passed with flying colours! (or should that be ‘failed miserably’?} However, she said that the pads, which are the only thing they offer, are wholly inadequate and would not suit me. Next, I had a chat with the nurse at the hospice, and she produced some pads which were fine for me, but it was clearly not something she was supposed to be doing, as it was all very ‘under the counter’ and I had to smuggle them out of the hospice! Next, someone from community health contacted me to announce that I would have a delivery of pads. I’m allowed 3 per day (nothing like enough!!) and need to re-order when I want more but not before I’ve used up my allowance. They arrived this morning – a HUGE boxful! When I asked the lady at community health about collection of the waste, she was not at all helpful. It appears that, both in Wales and in Shropshire (I cannot speak for other counties), this sort of waste is now treated as normal waste and goes into landfill, ie into the wheelie bin. I spoke to Powys County Council waste department and they confirmed this. I may also drop it into the ‘non-recylcable’ skip at the local recycling centre. There is no collection service of any kind. I must say, I am shocked by this, but I guess it’s one of the manifestations of cuts to local government services, and there’s absolutely nothing I can do about it.
On the brighter side, I had a chat with the hospice doctor last week to ask whether a stoma might be appropriate for me. I can’t think why no doctor has ever mentioned before that it would help bypass my problem. After all, I have had bowel problems now for four years. The doctor thought it might help now, and immediately contacted the oncologist who suggested that I go straight to the surgeon. Result: I have an appointment to see the surgeon towards the end of this month. To be fair, I’ve always been terrified of having a stoma, and have not exactly sought one, but I have read on here that those who have them find them a great help in regaining control. One person described it as ‘no big thing’. So I think it’s time to bury my fear and find out whether it would be suitable for me.
Love to all, Dyad
