Thursday, May 13: Well, the ‘blip’ proved to be a bit more ‘blippier’ than anticipated. I did all the things everyone advised me to do and rested completely over the Bank Holiday weekend. The weather was pretty awful so it wasn’t too hard to stay inside with a well-stocked kindle. Unfortunately, it didn’t make any difference to the cough.
On May 05, I spoke to the Specialist Nurse (SN) who sounded disappointed about the downturn. We talked about the possible reasons for the breathlessness and the cough. It came back to what I suspected: either scar tissue in my throat from the radiotherapy targeting the lymph nodes above my collarbone or too big a reduction in the steroids. Specialist Nurse said it wouldn’t be problem to increase the dose.
Might not be a problem for SN who isn’t the one with swollen ankles, fluid-filled lumps which can be squished from front to back of my shoulders (when Sue told me her swollen bits moved around her body I wasn’t sure what she meant – now I know), a neck so swollen it would look good on a Galloway bull and puffy eyelids. On Friday when SN called to check on me I said things were much the same so there would be a discussion on Monday between SN and oncologist and SN would call me either on Monday afternoon or Tuesday morning.
I did briefly think about making the radical suggestion the oncologist could phone me directly.
I reduced my steroids from 15mg a day to 10mg on Friday and felt OK when speaking to the SN. Friends came round later, bringing lunch for us to eat in the sunshine (real proper warm sunshine which had us taking off jackets) in the garden and I still felt fine and so happy to see them.
Saturday, however, was a rubbish day. It’s hard to describe how different everything felt. I spent most of it asleep, occasionally waking up to read for 20 minutes before dozing off again. The DH cooked our evening meal. The DH has done quite a lot of cooking over the last 10 months. It hasn’t improved and after coming home from my last spell in hospital I’ve cooked. I like cooking but on Saturday I couldn’t have boiled an egg.
On Sunday I had a lazy morning, going back to bed after breakfast, dozing rather than falling soundly asleep and in the afternoon the DH and I went to a garden centre. I felt a bit more like myself. I cooked. The next day was a better day and I spent a bit of time in the garden.
Then on Tuesday, SN called to say the oncologist had agreed that I should increase the steroids and review the situation in another week.
We had a brief negotiation session during which I admitted I’d had a really rubbish day on Saturday, the day after my steroid dose reduction, but had rallied on Sunday. I suggested, as I was now over half way through the 10mg week, instead of increasing the dose, I stayed on the same dose for the remainder of the week and for following week. This was deemed acceptable. I suspect I might have gone ahead with this strategy regardless because I really, really don’t want to increase my steroid dose and be on them the drug for any longer than absolutely necessary – wonder drug that it is.
I was starting to feel well enough to spend some time in the garden (pottering rather than full on gardening) and start walking again. Short walks.
The other thing which happened on Tuesday was a telephone consultation with the pulmonary rehab team leader about my breathlessness and coughing issues. This is partly why I didn’t suggest the oncologist phoned me herself because the SN was instrumental in this consultation taking place – though only because I asked.
Top Tip – ask! If there’s anything you need to know or something you feel might be available to help, then ask. I asked so many times over several months about exercises to help my breathing. To start with, I got nowhere. This was partly my fault for not making clear what I was asking for. People heard ‘exercises’ and thought I meant running or cycling or other kinds of physical exercise when I meant breathing exercises and partly the fault of everyone involved in my lung cancer care who didn’t think about the benefit of breathing exercises. I didn’t even know a pulmonary rehabilitation person existed.
Finally, my new SN appeared on the scene, understood what I was asking and talked to the lung physio about it. I was sent an initial handout with some exercises and one, simple, brilliant method to control short of breath breathing. That alone endeared me to both of them! By the end of the phone consultation with the pulmonary rehab person on Tuesday I was convinced I could learn how to control this cough (it might even have become a habitual cough and there are strategies to deal with it) and what is described as ‘dysfunctional breathing’.
Today, I received in the post from my lung physio more handouts with exercises and strategies, a relaxation CD and a follow-up appointment and I’m wondering what happens to lung cancer patients who don’t ask for this kind of help because they don’t know it exists. Why the lack of communication? The lack of joined up thinking?
Also, today I received the appointment letter for my CT scan. This is the one which will tell how effective the cancer treatment has been. It’s at 10.30 on May 27 and I’m practically counting the hours, which is daft because the day of the scan tells me nothing (it does let me don scrubs and feel as though I have a walk on part in Holby City, which is the most fun part of it all) and I won’t know the result until Monday, May 31 when I meet the oncologist.
I’m in a strange space at the moment. There’s no point in crossing fingers and toes because the work of the treatment, both chemotherapy and radiotherapy, is done, so whatever it has achieved (or not) has happened. It’s still hard, though, not to cross fingers and hope.
Until then, I’m not going to post an update. You’re probably as fed up as I am about the wait for concrete news – though do let me know if you want more information on how to correct a habitual cough (it includes sharp sniffs and effortful swallowing) and dysfunctional breathing.
I’m delighted to share a wonderful review of Drunk Chickens and Burnt Macaroni by author, poet and blogger Liz Gauffreau. It’s the kind of review which makes a writer grin from ear to ear, do a wee happy dance around the desk and decide that writing books is worthwhile after all.
Mary Smith’s Drunk Chickens and Burnt Macaroni: Real stories of Afghan women surprised me. Going into it, I expected the memoir to be interesting, as its focus is on a part of the world I know very little about. What I did not expect was that it would be so compelling.
For three years in the 1990s, Smith and her partner Jon worked in Afghanistan for a nonprofit to provide healthcare and health education for women in Mazar-i-Sharif. Poverty, hygiene practices that led to disease, cultural myths, and reluctance to discuss gynecological problems with male doctors were all challenges Smith was faced with addressing.
She did it by establishing the Female Health Volunteer training project, whereby Afghan women would be trained to provide health education to the women in their villages, focusing…
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Well, it’s been a couple of weeks since I posted a cancer diary update. I was feeling a lot better thanks to the steroids and the weather was good (bright and sunny, if still cold) so I was able to go out most days for walks.
The walks became longer until I was managing two to three miles on the level and my step count, adding in time working in the garden, was reaching 10,000 a day. I even managed a couple of walks round Doach Woods which is a bit steeper. Yes, I was out of breath on anything steeper than flat but my pulse rate soon dropped down again, I was hardly coughing and really thought the pneumonitis was on its way out.
On Monday, with Covid-19 restrictions finally beginning to lift a friend came to visit from Glasgow and we had a lovely time walking and talking. On Tuesday, my son and his partner arrived and again we walked and talked and talked and talked. I did feel I was becoming slightly more breathless but dismissed it as I really did talk an awful lot more than usual over the two days. When the DH and I go walking together we don’t talk to each other much – we can do that round the kitchen table.
By Wednesday evening I was feeling pretty flat – my visitors gone and although we hope to meet again soon who knows these days what might happen. There could be another lockdown just around the corner. I’ve been becoming more breathless and coughing more and feeling tired in a way I haven’t for weeks.
The DH thinks it’s probably just a blip after doing a bit too much walking and talking and a couple of days rest will put things right again. Or, it could be my body decided the last weekly drop in my steroid dose was too much? I really don’t want to start taking a higher dose again.
Of course, it’s a Bank Holiday weekend so no specialist nurse or GP to ask. I really have rested today – step count under 2,000! – and I’ll do the same tomorrow and Monday (the weather forecast is pretty rubbish, anyway) and see how things are on Tuesday.
In the meantime I’ll try to keep thinking it is just a “too-much-talking” blip and not start imaging worst case scenarios – is the tumour starting to grow again now the radiation has finished working? This I can’t know until the last week (possibly the last day) of this month and I don’t want to cope with almost a month of scanxiety.
Positive thinking – altogether now: ‘It’s just a blip – don’t talk so much!’