Saturday, 31 July: I’ve not yet quite got into the swing of regular blogging after my break and was shocked to find over a week had gone since I last posted.
On Wednesday, 20 July I had the ultrasound on the lump on my neck, which turned out to be three small lymph nodes, suspicious enough in appearance for the doctor to decide to do a biopsy. He said in the lab they will be looking to see if the cells are cancerous or not. If there are cancerous cells he thinks the oncologist will want to look at treatment options.
I’m not sure when I’ll hear the result and I so hate the waiting. Since the tumour in my lung was discovered last July, there have been endless periods of waiting – during which my imagination runs riot, scaring myself stupid with ‘what ifs’. Funny they never include a ‘what if, there’s a totally innocuous reason for the dodgy lymph nodes and all’s well! No, it’s what if the cancer is back, what of it has spread to …. (name every organ in the body) or …?
In the meantime, since Saturday, 16 July I’ve had a painful right calf. I initially assumed I’d pulled a muscle but not only did the pain become more painful, the leg began to feel hot. When, on Wednesday night, I asked the DH if one leg looked bigger than the other he insisted on taking me to A&E. Two hours later, the doctor said someone would call me next morning to come in for an ultrasound on my leg for a suspected deep vein thrombosis (DVT).
The ultrasound was done on Friday (all the slots for the next day had already been taken by the time the A&E doctor put through the request – it was about 2am by then) and the DVT was confirmed. By this time my right ankle had vanished into the general puffiness, my shin was hot with skin so red and shiny it looked like it might just burst open and it was painful.
As the ultrasound request came from A&E it was to there the report was to be sent and I guided back to A&E. Things became slightly bizarre then. First, I was surprised to be called into the triage nurse’s room where she asked me what had brought me to A&E this morning. I explained I’d just had an ultrasound which confirmed a DVT and the report – I pointed to the computer – should according to the radiologist, be there and I was to see a doctor. The nurse maintained she’d never heard of such a system and sent me out to wait.
It wasn’t long before I was called by a doctor, who must have received the report, and who showed me to a bay. He excused himself, saying he’d back in two minutes. A nurse came in and asked if I’d mind moving to a different bay. As she started to push the bed out the door ‘my’ doctor returned to ask where she was going with his patient. “Two bays down,” she replied, “as it will be easier to carry out her eye procedure there.”
Luckily, the confusion was soon sorted out (and it soon would have been anyway the moment someone tried to get anywhere near my eyes!) and after an examination I was prescribed Dalteparin injections. The doctor said a nurse would come to administer the first one and teach me how to do it. Sometime later, saying the nurse was ‘too busy’, he returned to give me the injection (can’t say it constituted a teaching session). The prescription pad was finished and he said he didn’t know how long I’d have to wait until a new one appeared but I could leave if I wanted, with three injections, and call my GP practice to ask for more. I said I’d leave.
My GP was able to write up a prescription for more injections so I’m now stocked up for a few weeks – though I still need to be shown properly how to administer the jags myself. The DH, fortunately, is very competent but if I want to go away by myself I need to learn.
On Monday, 26 July I was taken aback when my oncologist phoned me. It’s only the second time she’s ever called. The biopsy report hasn’t come through, of course, but she’d been informed about the lump and the biopsy and the DVT. She is arranging for me to have a CT scan as soon as possible so she can see exactly what’s going on. And so, I wait.
I hope by this time next week I’ll have news of results.
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.