Monday, 16 August: Just a quick update to let everyone know how my meeting with the oncologist went today.
A biopsy of the lump in my neck, formed by three small lymph nodes, had shown metastatic adenocarcinoma; the CT scan was to find out where else the cancer may have spread.
The good news is that it seems not to have spread anywhere else and is, so far, confined to those lymph nodes.
Chemotherapy isn’t really an option. I can probably explain why not after I listen again to the recording of our meeting but as the recording is over an hour I’ll have to search for relevant bits to pass on. The oncologist does seem to think, however, that a four week course of targeted aggressive radiotherapy could be a useful treatment, even if not curable.
I need to replay our discussion, in particular listen to the probably side-effucks. Even if the memory of the really painful throat, the burnt skin and the extreme tiredness has dimmed a bit (like after childbirth) it is still there. And I remember clearly the pneumonitis, the inflammation in my lung, in particular I’ll never forget the horrendous stay in the assessment unit where they misdiagnosed and mistreated the condition. The radiation-induced fibrosis has never left me causing the breathlessness and the cough, which have so adversely impacted my life. I need to listen and think and research and ask further questions.
If I do nothing then the oncologist thinks perhaps I’d have about six months (she gave me seven last time!) but with treatment that could be extended to a year or more. What I don’t know is how well I would actually be for those extra months. If how I am now – breathless on the slightest exertion, coughing when I’m talking, tired and lacking energy – is as good as it gets then I worry about how I would feel if I ended up still breathing but feeling even more wretched. Don’t worry, I’m not asking you to decide what I should do! This is my decision – but I may ponder aloud.
The next step is to have a PET (Positron emission tomography) scan to check if there are any ‘hot spots’ the CT scan missed. I’ve agreed the oncologist should go ahead and book this while I’m making my decision. It will be about a fortnight before the appointment is through – then however long for the scan result – then more waiting to see the oncologist again.
The one thing I have learned about this world of cancer is that the only certainty for any of us is that it will involve a lot of waiting.
A wee while ago I posted some photos of Belted Galloways in a field near Threave Castle. One of them has just had a calf. If we’re looking for signs and portents I’m taking new life coming into the world as a good sign.
Saturday 07, August: The biopsy result on the lymph nodes shows the cancer is now metastatic. To quote from the report: “The morphological features and immunoprofile are consistent with metastatic adenocarcinoma from the lung.”
I had a CT scan on Friday including neck, chest, abdomen and pelvis to identify where the cancer has spread. And, so, I wait again for the next result.
This must be the shortest update I’ve written because I haven’t yet processed what I’m feeling/thinking – and probably won’t until the scan result comes through and the wait to see the oncologist and find out what, if anything, can be done.
I’m delighted to share a post by my friend Robbie Cheadle who travelled from home in South Africa to visit me in Dumfries after reading Secret Dumfries. It was lovely to meet up in real life and be her tour guide for a day – and her review of Secret Dumfries makes my heart sing.
In my Thursday Doors post last week, I said that my family had travelled to Dumfries to meet blogger and author, Mary Smith. Mary took us on a short tour of this fascinating town.
A few interesting artifacts from the Dumfries Museum:
The story of the Siller Gun
James VI of Scotland and I of England presented the Seven Trades with a trophy – the Siller Gun – to be awarded in its annual shooting competition. At a time when tradesmen had to be prepared to defend the town, the King’s intention was to encourage their shooting skill.
It is believed that the gun originally took the form of a miniature cannon mounted on a wheeled carriage. It was remodelled to resemble a flintlock musket by David Gray after it was broken in 1808. The individual responsible for the…
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.
Wednesday, 02 June: I met with the oncologist on Monday 31 May to hear the result of the CT scan, which was done on Thursday 27 May.
I won’t keep you in suspense. The cancer, it seems, is under control for now. Talking us through the scan showing on her screen, the oncologist said: “We can still see there is a bit of a lump there. But the hope is … that’s dead tissue. But can I say that every single cancer cell has been killed? No, I can’t. But this is as positive a result as we could possibly have hoped for.
“No signs of any growth, no signs of any progression, no signs of any spread and the disease that is there has responded and the hope is it’s dead tissue. Realistically the only way we know that for sure is with time.”
We’ll meet again in three months to see how things are going.
I should have been shouting joyously from the rooftops but when I asked the consultant about my shortness of breath she said that realistically things might be as good as they are going to get. She didn’t mention lung fibrosis but on my copy of the scan report I read: “Resolution of the radiation induced pneumonitis, now prominent radiation induced fibrosis.”
Radiation-induced fibrosis is a long-term side effect of external beam radiation therapy, which results in many symptoms, including shortness of breath, that have a significant impact on quality of life. It’s progressive. Average life expectancy from the time of diagnosis is between three and five years.
You can understand why my delight at being – at least for now – seemingly free of cancer is tempered by despair at what else I have to cope with.
I said to someone a few weeks ago that every time I feel I’m making progress something takes the feet out from under me and I have to scramble back up again. I do wonder how many times I’m going to be able to scramble back up again.
I will get my head round this but I am going to take a complete blogging break for the next couple of weeks. I will be back.
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.
Author Mary Smith Presenting a Graduation Certificate
Click on the book cover to purchase from Amazon.
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…
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!’