Wednesday, 24 February: It’s grey and wet here and has been for the last two days which may account for the dip in my mood. I suspect, though, more than the weather blues, it’s caused by trying to deal with the seemingly endless fatigue and lack of energy.
On Sunday, the weather was lovely following several days or torrential rain, and my sister and I met for our first socially distanced walk in – well, I don’t even know how long it’s been since we saw each other. We met at the car park at Rockcliffe, a small village on the Solway coast. I’ve written before about the circular Rockcliffe/Kippford walk when I really struggled, post-chemo, pre-radiotherapy.
We decided to walk in the other direction to Castle Point, site of an Iron Age fort. It’s not particularly strenuous and – I’m guessing here – the circular walk is only about 2.5-3 miles.
I felt slightly breathless, coughed a bit when we started out. I was annoyed about the cough as I hadn’t been coughing for ages – I put it down to my lungs being in shock at meeting fresh air after days of being indoors.
It did feel good to be out in the sunshine and I felt fine when we returned to the car park.
In the evening I couldn’t keep my eyes open and was in bed before 9pm. Three miles and I was knackered. So much for my dreams of one day walking the Camino de Santiago!
I know the oncologist warned me the radiation could cause severe fatigue, which could last for weeks, even months. She warned me if the radiation caused so much inflammation in my throat I couldn’t eat I’d need a feeding tube but I escaped that and I fully expected, as six months before, I was actually pretty fit to escape the fatigue side effuck.
This is the new term for side effects listed on Abigail Johnston’s wonderful blog No Half Measures. I’ve stolen her side effuck from her Glossary of my Metastatic Breast Cancer (MBC) Experience. After all, I reckon, breast cancer, lung cancer, ovarian cancer, whatever kind of cancer for which we’re having treatment, we all have to cope with several side effucks.
There are times when I’m reading Abigail’s blog my jaw is practically hitting the floor as she describes the discussions she has with the various members of her medical team before deciding on the treatment to choose for a particular metastasis, what she describes as a ‘pesky met’. It is oh so different in America! Patients are, of course, paying customers and they are treated with respect and time and explanations and advice. I think I’m doing well with a weekly phone call from the cancer nurse and an occasional meeting with the oncologist (the last was in mid-January). I certainly don’t have discussions with a radiation oncologist as well as a medical oncologist and various other doctors and advocates. Wow.
The day after the walk was another lovely day. I pottered in the garden for a little while but I could not summon up the energy to walk. The fatigue side effuck had me well and truly in its grip.
I had my weekly call from the specialist nurse today and now have my appointment with the oncologist next Monday, March 01. He said to mention my lack of energy to the oncologist – wouldn’t it be lovely if she could prescribe an energy pill?
Not only am I too knackered to do much walking, it has taken me the best part of a couple of hours to write this post for heaven’s sake and my inbox is stuffed with emails awaiting replies. I used to laugh at the DH who could take half an hour to write a two-line email – because he’s a numbers person and doesn’t trust words. Now, it takes me as long and I do love and trust words – I’m just tired. And by the time the inbox is dealt with I have no time to do any writing projects and I haven’t written an Afghanistan blog post for weeks.
I’m trying to be kind of upbeat about this tiredness side effuck but there is a serious side I’ve avoided addressing but really shouldn’t ignore. In about six or seven weeks I’ll have a scan which will show what the treatment has – or hasn’t – achieved. This will give me some idea (I know it will only be a vague idea because my oncologist doesn’t have a crystal ball) of how much time I have left. When I know that, I will have some big decisions to make on how I’ll want to use that time.
In the meantime I better start putting my list of questions together for Monday’s meeting with the oncologist. Feel free to chip in as I won’t remember all the things I need to ask.