I’m not really sure what that means, but I think it means that big things are made up of lots of small things. And that’s the case with my cancer. For all I know, it may be like this for anyone whose cancer has metastasised. Before I had cancer, I just assumed that it was one big thing, and maybe that’s how it is with people who have one solid tumour. But mine, because it had already spread to lymph nodes when I was diagnosed, has been diffuse all along. And that results in all these ‘mickles’. So I thought I might list them (you can tell that I like lists, can’t you?) to see whether this rings a bell with some other cancer patients, and also to enlighten my many readers who don’t have cancer and who might like to understand a bit more about how it might manifest itself, bearing in mind that we are all different.
OK, so starting at the feet, my ankles are quite swollen, especially the left one, and sometimes I lose feeling in my left foot. I think both these symptoms have to do with the fact that my left side doesn’t work very well. I had the DVTs on the left side, though in the arm not the leg. Anyway, this is a minor symptom. I can only really deal with it by sitting with my legs raised on a stool, doing ankle rotations etc.
Next, my legs are just really, really tired, so that walking is nigh impossible. Or is it? Sometimes I think I’m just getting lazy, and sometimes I blame it on the dark, dank days of January. Walking uphill or even upstairs seems to be a major undertaking. However, I did walk a bit at the weekend. We were in the New Forest, which is very flat, and I walked for about an hour, should think. Slowly and with frequent stops on benches, but a respectable distance nonetheless. I’m sure that when the weather improves, so shall I.
The next area is the abdomen, and this is a tricky one to talk about. There’s a lot going on in there. (Spoiler alert: skip this bit if you are at all squeamish). The thing that affects me the most is this fistula. I really can’t go into unpleasant detail in a public forum, obviously. On the other hand, I had no idea that this might happen or of how to deal with it, so I’m sure that there must be other people out there facing the same issue. I am a very practical person, as I’m sure you’ve gathered by now, so my first reaction, when I realised that I’m going to have to deal with a new limitation in my life, was to find out about incontinence advice and supplies. Instead of bemoaning my fate, I’m going to learn how to manage it. To that end, my clinical nurse specialist is going to refer me to the district nurse (whom I haven’t met yet – didn’t actually know that she existed) who will assess and guide me. Other people live with this, so I can too. One of the difficult-to-handle consequences of this condition is that there’s a lot of clinical waste. This is OK if one is at home, but not easy to handle if one is staying in a hotel or with friends. Since the people we stayed with at the weekend are my oldest friends, I had no hesitation in explaining what I needed in terms of privacy and suchlike, so it was not a problem. But they are also my sailing friends, and one of the items on my bucket list is to join them in early Sept to sail around the Outer Hebrides. Even thinking about it brings tears to my eyes. It's such a stunningly beautiful part of the world, and I want to go there one more time. But how on earth would I cope, considering what I’ve talked about in this paragraph? When you go to the toilet on a sailing boat, to flush you have to pump and pump and pump. The way I am now, I would be pumping all day long, with an arm that doesn’t work properly! Can it be done? I’m just not sure at present, but that trip is still firmly on the bucket list.
The other things going on in the abdomen are several enlarged lymph nodes, some of which appear to give me pain, and some of which I’m not even aware of. There is also long-term constipation in the ascending colon, which I am now dealing with gradually with small daily doses of senna syrup. I truly think that that is improving, though the abdomen is as swollen as ever.
OK, moving on up, we come to the hands. I don’t understand why, because I’m not on chemo, but my hands are very dry and chapped, with those horrid little cuts at the corners of the nails. I had this last year, at which time it was a very obvious side-effect of Capecitabine, but I don’t know what causes it now. It’s worse in the left hand, so it may have something to do with the DVTs. I frequently slather on the handcream (home made by me) but it’s probably not heavy duty enough.
Lastly, we come to the shoulder. At present that’s the worst thing of all. You may remember that originally I had an enlarged lymph node in my neck: to be precise, in the supraclavicular fossa – the indentation just above the collar bone (I just like the name!). Radiotherapy in October dealt with that, but the consequence was that the lump spread and flattened. The cancer, as mentioned before, is creeping around my shoulder, down my back, arm and chest. In the arm it causes pins and needles, loss of feeling in the fingers and numbness. In the chest, shoulder and neck it causes excruciating pain, but only in the mornings and only when I stand up or walk around. Sometimes it makes me scream with agony. I have had a couple of consultations with the palliative care doctor at the hospice with the result that we’ve increased my pain relief quite substantially. Because the onset of the shoulder pain is so predictable, I can take Oramorph prophylactically, ie before the pain starts. I tried that this morning and it did work to a certain extent, but it’s still hurting now. Unfortunately because we are changing my meds, I’ve been advised not to drive for a few days. What a bummer! Where we live we are utterly dependent on a car. Of course John can give me lifts when I need them, but I hate to keep bothering him. So I should have gone swimming this morning, but instead I’m holed up here writing my blog and watching the snow settle in the garden.
Oh, and finally, finally, the chipmunk cheeks! This is obviously not a cancer symptom but a steroid side-effect. I hate them, but other people don’t seem to notice, or say that I look really well. Grrr!!! And the other thing is that my face is furry! Honestly. This is apparently a steroid side-effect too. The chipmunk look will really take off if this continues...
Before I sign off, I just want to mention the very helpful consultation I had with my GP, who has been absolutely marvellous. I am aware that no-one can truly predict my ‘shelf life’, and I don’t ask them to. But what I wanted to know from him is what is likely to happen between now and ‘then’. I feel that I’m being treated by the professionals as an ‘end of life’ patient, which makes me a bit nervous! Is there something they know that I don’t? Anyway, my GP, who obviously takes a great interest in end of life patients, explained that the pain would get worse, and that calcium would leach out of the bones into the blood, causing all sorts of problems – hence regular blood tests from now on. But these two things are physiological and can be dealt with. He said the main thing was fatigue, and that the best thing I could do for myself was to go to bed every afternoon. In fact he ‘prescribed’ this rest. He also, very wisely, said that I myself will know when the time is approaching. The fatigue will just get worse and worse, so I will have to pace myself.
Well, I think that’s about it. If you’ve read this far, thank you. I’ve really lost track of who among my friends is reading this blog, and I’ve no idea whether I hit the right note or not. But I find it very helpful to write it, and if you wade through it all the way to the end, good on you!
With love to everyone, dyad
