MarySmith’sPlace ~ CancerDiary #40

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.

Standing Stones on Machrie Moor, Arran

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.

A surprise gift of sunshine from a friend continues to brighten my days

150 thoughts on “MarySmith’sPlace ~ CancerDiary #40

  1. Last time Taliban was in power they shot Hussain. One of my students in Drunk Chickens is in Kabul with her family, unable to get out. One of her daughters is a midwife, another a journalist and one is still at school – they are too young to remember life under Taliban.
    I would love to see you – could we sort something out for after 24 October when I come back from Islay? I think I’ll still be around and up for visitors and blether 🙂

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  2. Really sorry to hear this Mary, what an awful time you have been going through. I hope the chemo helps keep things at bay for a long time and you find some energy to visit those places you love and feel connected with. Thinking of you, take care xxx

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    • Thanks, Ann. It’s a pretty crap time all round! Still pondering my cancer options – not making me sing for joy – and wondering if there’s anyone I can contact who could help friends get out of Afghanistan.

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  3. Mary, you are in my prayers. What a shock to absorb and I am glad you had your writer’s retreat experience to bolster you. That report style is beyond ridiculous! A trip to Islay with your sister and all the love and support we can flow to you in our thoughts and prayers… that loving energy is all around you, always. ❤ xXx

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  4. I’m so sorry to read the news that the cancer has come back, Mary. It’s always difficult to know what to say, but I think many people have already said it in the comments. I’m glad you got to the writing retreat on the isle of Aaran, though. That sunrise looks beautiful.
    I hope your trip to Islay with your sister is a lovely one. The autumn colours should be visible if it’s anything like what’s happening in southwest Wales at the moment.
    Take care.
    Hugh
    xx

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