Tuesday, 20 July: When I took my blogging break at the beginning of June I expected it to be for two weeks. Yet, here we are: over six weeks later and I’m only now getting myself together to write an update. It’s a long one, but I’ll put in some nice pics to break it up a bit.
I’d decided to take a break from blogging and social media partly because I was heading off for our first holiday since 2019 with the DH, our son and his partner and partly because for the first time ever, writing wasn’t helping me to process what I was feeling about my cancer and what was happening in my life. Although there was the really good news the cancer was under control for now, I was worried about my cough and breathlessness, which the oncologist seemed to think wasn’t likely to get much better. The research I did about my radiation-induced fibrosis was also pretty disheartening.
We went to the Isle of Lewis and Harris, the main island of the Outer Hebrides. It is stunningly beautiful from moorland to mountain, from lochs to beaches with miles of white sand and the amazing Calanais Standing Stones. Visiting them has been on my must-see list for a long time and was also partly a pilgrimage in Sue’s name as she was there two years before.
I have to say, though, the edge was taken off my enjoyment because of my fears about the fibrosis. At the back of my mind was a constant niggle about how I’ve been left with worse health issues than before I started treatment. Alive, yes, which I wouldn’t have been without treatment, but … It’s hard to explain without sounding totally ungrateful for the treatment which has kept me alive – though it has scarred my lung, left me breathless and unable to enjoy the walking which was so much a part of my life and has even given talking to friends on the phone a nightmarish quality as I have to keep pausing to cough. Getting dressed has me puffing and panting. There are books I want to write, and poems, but my brain isn’t functioning at that level and I fear it might never again. That’s before the weight gain which I hate. It’s taken me less than a year to put on two stone (28 pounds but you’ll have to work out the kilos if that’s your thing) and it will take about two years to lose it again – do I really want to spend that amount of time counting calories and trying to exercise more. Back we come to the breathlessness on exertion.
Once back home I continued to try to find out more about pulmonary fibrosis. I asked the specialist nurse to ask the oncologist what, if anything can be done to alleviate the symptoms – because, of course, I can’t ask directly. When I meet the oncologist I always have my list of questions ready but other questions arise depending on the responses and sometimes it’s after the meeting ends I work out what I need to ask.
I had another telephone consultation with the lung physio who previously provided me with various techniques to suppress my cough – though this was before we knew about the fibrosis. She spent time explaining that my fibrosis is not the progressive kind and now that the cause – radiation – has been removed it should not become worse. She also said she’d ask the respiratory consultant to speak to me – which she did the same day in the evening. If only I’d had such detailed explanations earlier I would have enjoyed my holiday so much more.
I find it puzzling how some people in the medical profession are excellent at understanding how the patient feels and at communicating in a clear, understandable way – and, best of all, don’t seem to mind the questions – yet others seem so totally focussed on the treatments they lose sight of the patient’s need to know and understand what’s going on.
The conversations with these two people made me feel much more positive, not least because the consultant explained the tiredness from treatment was likely, in her experience, to continue for about a year and I shouldn’t be despondent about not returning immediately to my past fitness levels.
I was planning to re-join the blogosphere – when the DH went down with Covid. He has been super-cautious since my cancer diagnosis last summer when the oncologist warned me if I contracted Covid it would kill me as the chemotherapy would destroy my immune system. He never left the house without a mask, kept his distance from people and had been double-vaccinated.
I received a text telling me to get tested and to self-isolate. This was easy enough when the DH was in hospital but when he was discharged and we have to continue the self-isolation under one roof it was a bit trickier – thank goodness we have a large flat and we have a garden. Anyone thinking it would be a mild dose as he’d been vaccinated should hope they don’t get to find out what a mild dose is really like. I hate to think what it would have been like had he not been vaccinated because his cough was horrific. For a while, it was far worse than mine. He couldn’t even record a message on the answering machine to say he would be off work for a week and not responding to calls or texts without having paroxysms of coughing. It didn’t stop someone leaving a message practically the next day asking him to order equipment but on the whole his clients were patient and supportive.
How I didn’t get it, I don’t know. I can only assume my immune system has bucked up since I finished chemo and radiotherapy and have been eating well and taking a liquid iron supplement and getting out whenever I can.
I could fill several blog posts on the absolute nightmare of trying to find a venue in Dumfries & Galloway where the personnel on duty will actually carry out the Covid test rather than supervise people doing it themselves. I do not believe I am the only person in the region who is too much of a wimp to stick an extra-long cotton bud down to her tonsils and so far up her nose her brain cells start to explode. I can just about cope when a qualified person is carrying out the test as long as I have something to hang on to and twist! I spent a day online and ringing round and finally a wonderful person on the NHS feedback phone line said she’d see what she could do and turned up trumps by getting me an appointment where a nurse would do the test.
The DH is slowly recovering – his cough is not quite as bad as mine now – and so I thought again about getting back to my blog. Then, I found a strange lump on my neck which I’d not noticed before. The GP thought it might be an enlarged lymph node, took bloods to check for any infection and as there was no sign of any, contacted the oncologist’s secretary. The specialist nurse called to tell me he was going to arrange a CT scan. When I asked where, he said in the local hospital. I said I meant where on me, which bit of me was to be scanned? He said chest and abdomen. I pointed out the lump was on my neck.
Someone called the next day to say I’d been booked in for an ultrasound. If it shows up anything suspicious I’ll have a biopsy done. Specialist nurse had gone to the radiology department to explain the situation (and my comment about the lump being on my neck) and it had been suggested an ultrasound would be a better first step than a CT scan. I’m just so glad I made a point of mentioning the lump is in my neck.
The ultrasound is tomorrow, Wednesday 21 July. I looked at last year’s diary and I had my PET scan on 29 July. I’m hoping it might be nothing more than an indication I have had an infection recently – maybe I was the one who got Covid and recovered! But, I have to be honest and admit I’m very nervous about what might be found. And, it is far too hot here to wear the kick ass boots!
Anyway, this must be the longest update I’ve written done which I suppose serves me right for not keeping up to date with things.
I want to say a big thank you to everyone who has been checking up on me, whether directly or through mutual friends and bloggers. I truly appreciate your concern and kind thoughts.