September | 2021 | Mary Smith's Place

I’m still dithering over what to decide about the chemotherapy treatment option.

I have had a meeting with the palliative care consultant which was helpful and reassuring in that chemotherapy and palliative care are not an either or scenario and if I decide to go ahead with the chemo, I can still be seen in palliative care for help managing any symptoms from either the disease or from the treatment. Knowing support is available in managing symptoms caused by the treatment is reassuring.

Other topics discussed with the consultant included resuscitation and whether or not I should have a DNR in place and also whether or not I would want to treatment interventions such as ventilation (I think that’s a no).

I started on the SafeFit trial established by University Hospital Southampton NHS Foundation Trust, Macmillan Cancer Support and other medical bodies to enable people with a cancer diagnosis retain or regain physical fitness levels. After a very lengthy process or questionnaires both online and over the telephone – plus a bit of a hiatus in my application because of the unexpected appearance of cancer cells in my lymph nodes after my treatment ended – I was accepted and assigned an instructor. For the first four weeks I have one-to-one online exercise sessions, tailored to my fitness levels and needs. It’s very much a holistic approach so my instructor always checks on my stress levels – not sure she expected me to burst into tears on our first meeting but she coped very well.

I also re-started Pilates classes after a break and that felt good, too. Over the period of lockdown, which more or less coincided with my cancer diagnosis and treatment, the class has been so important – the exercise but also seeing people, even if only on screen.

All in all, I’ve been feeling fairly well – and although I can see the lymph nodes in my neck expanding they aren’t bothering me too much yet – though I do worry about winter when I usually wear polo neck jumpers, which I suspect will be an irritation. But then, as always seems to be the case, whenever I’m doing the things I’m supposed to be doing to improve my health, to stay as physically strong as possible, something knocks me back. This time, I put my back out. I was putting the cat’s breakfast down on the floor – forgot to engage my core and bend my knees. Mea culpa.

I reached for the frozen peas followed by the heat pad. Dug out the lumbar brace and took paracetamol, expecting it to ease off after a few days. It didn’t and I had to give in and make an appointment with my GP. Before cancer, I was rarely at the doctor. I was brought up by parents who believed the NHS was a wonderful privilege never to be abused – so you had to be seriously ill before the doctor was consulted – and so I still hate to feel I’m making a fuss about nothing.

Oh, my goodness, what a difference strong painkillers and a muscle relaxant made! When I woke up three days later (I’m kidding) I couldn’t believe how much the pain had receded. Before the pills, I couldn’t have sat for long enough to type this far. I should apologise here to the many people waiting for a reply to their emails, letters and cards – now you know why I’ve not been able to keep up.

The llama who has firmly turned her back on me is the llama I was going to take for a walk!

The one thing which did help my back when it was bad was walking, which really eased it. I was delighted to be invited by a friend to take one of her llamas for a walk. It was a lovely.

Annie the llama did grumble a bit at first about being made to go for a walk but she soon stopped complaining and seemed to enjoy looking about her. Occasionally, she turned to stare at me as if to say: “I don’t know who the hell you are but I think we can manage this together.”

I’m so looking forward to my trip to Islay with Wee-sis, which is still a couple of weeks away. Isn’t it odd how time moves slowly at times? Before Islay, though, I have another exciting event – a wedding. I can’t remember when I was last at a wedding. I can’t remember when I last wore heels!

The week I come back from Islay (16-24), I’ll meet the oncologist, try to get answers to my questions and make my decision.

It’s been almost a month since my last blog post – and what a month of highs and lows and bits in between it has been. Get the drinks and snack ready for a long post!

Soon after the meeting with my oncologist, while waiting for the requested PET scan, I was on the beautiful island of Arran where I’d been invited on a writers’ retreat. I’ve visited Arran, with the DH, several times and on most visits we’d climbed Goatfell so I was concerned I’d be depressed knowing I can no longer do such climbs, nor many of the other walks I’ve previously enjoyed. Rather than be depressed, the combination of being in such a magical place with glorious sunshine, talking writing with three wonderful women, I felt exhilarated and by the end of the week had convinced myself I could climb Goatfell. I’d have to start early as it would take me all day with the number of rests I’d have to take but I was sure I could do it. I was also sure I was getting my writing mojo back.

It’s not often I’m up on time to see a sunrise – this from my window on Arran.

We were there to write but we did have a day out around the island and visited the standing stones on Machrie Moor. I’ve put photos of them on a past blog post. Sue Vincent and I hoped we would make it there together, possibly after she came to visit Cairn Holy last April. Sadly, that was not to be. It was a warm sunny day (first time I’ve seen the Stones in sunshine) and we saw two buzzards and a red kite so we knew for sure Sue was around.

My lovely GP had posted the oncologist’s report from the meeting to me. Unlike seemingly everyone on the oncology team my GP believes the patient should have access to reports and letters. And is happy to explain things I don’t understand. The report made clear if the cancer is confined to the lymph nodes in my neck the oncologist is suggesting an aggressive radical course of therapy – ensuring “the overlap (from previous treatment) was minimal and the doses to the normal structures such as the spinal cord and the brachial plexus are within acceptable limits.” I think that makes it clear why a) it’s important for the patient to be able to read the report and b) have things explained before the next meeting.

If the cancer has spread radiotherapy isn’t an option and neither are targeted treatments, nor immunotherapy, which can cause pneumonitis. Remember the trouble I had with that! Chemotherapy “potentially with Docetaxel and Nintedanib,” the side-effucks of which sound even more horrendous than my previous chemo drugs.

My PET scan was booked for the Monday after my return but an appointment letter was waiting for me saying I’d to be there on Tuesday, not Monday. I phoned to check and was told the date had been changed because it was a Bank Holiday in England and the fluorodeoxyglucose (FDG) they inject into the vein wouldn’t arrive on time. The DH had to change the hotel booking we’d made for the Sunday night to the Monday. Luckily, the hotel wasn’t fully booked. We checked in, booked a table in the restaurant and had a pleasant evening. In the morning I’d just come out of the shower when they phoned to say the scan had been cancelled. We drove straight home – at least I was able to have coffee and breakfast – not in the mood to linger in Edinburgh.

The next two scans were booked and postponed. Finally, it happened on September 06. We didn’t go up the night before so it wasn’t the pleasantest of mornings on what is a pretty horrible drive anyway and worse when not being able to have a coffee. I could drink water though wasn’t able to have any cough syrup or pastilles, though.

I only found out by chance about not taking cough medicine. Every pre-scan discussion which stresses the need to fast also says it’s all right to take medication as usual. I don’t know what prompted me to say I use codeine linctus but when I did I was startled by the vehemence of the response. “Oh, no, you mustn’t. Because of the sugars it contains it can cause false positives in the scan.” Well, wasn’t it good I asked! If it had been discovered I’d been swigging cough syrup the scan would have been cancelled.

Top Tip for anyone having a PET scan – when they say you can take medication as usual during the pre-scan fasting period – do check if it really is OK to take the medicine you have.

Of the various ups and downs over the month the biggest down of all with Taliban back in power in Afghanistan. A few, a very few, of my friends have got out. Most have not. Having people I love and care about begging for help I can’t provide is heart breaking and soul destroying for us all.

And, so to the last down in this post – the PET scan result. My appointment was today, though not with my oncologist who has Covid, but with one of her colleagues and it was a video conference. Not an ideal situation.

Unfortunately, it shows the cancer has not been contained in the lymph nodes in my neck but has affected lymph nodes in several places. This means radiotherapy is not an option. I was dreading making a decision about whether or not to have radiotherapy, especially when described as aggressive, knowing how much it f****d up my lungs last time. And this time it would have been risky because of the proximity to the spinal cord and the brachial plexus. Anyway, I don’t have to decide on that as it’s not going to happen.

The only possibility is a course of chemotherapy – a much more brutal combination of drugs than last time, and which might give me a few extra months to ‘live’. I include the inverted commas because spending several months feeling ill, fatigued and unable to do much does not sound like living to me – existing maybe but not living. The difference between having treatment and not having treatment in terms of ‘overall survival’ is about two and a half months. It appears the main benefits of the chemo may be that it would relieve symptoms. I don’t yet have any and don’t know what they might be. I will ask. I will have other questions, too.

I have requested to speak to a palliative treatment consultant before making any decision. Guided by my wonderful mentor at Maggie’s Centre in Edinburgh, I actually asked about this a week ago but the message was missed because my specialist nurse has been working from home and until this week had been unable to pick up messages on his work phone. I didn’t like the implication at the last meeting I had with the oncologist that if I decided to go for palliative treatment I’d be discharged by her and referred to a palliative doctor.

When today I asked for the PET scan report, which of course hadn’t been sent to me, this is what I was given! I had my eyes tested last week and the optician said they hadn’t change since the last test but I couldn’t read this report without a magnifying glass – or scanning it and zooming in.

Anyway, that’s where I’m at – the cancer is back, is not going to go away. I have decisions to make – should I plant more spring bulbs? – but for now I’m mostly looking forward to a holiday with Wee-sis on Islay next month.