MarySmith’sPlace – Good news and sad news; Cancer diary #29

My tumour, and its radiotherapy treatment area. It’s shrinking.

Tuesday, 30 March: As you know I had a meeting yesterday with the oncologist to hear more about the scan result.

I was aware from the hospital’s discharge summary the tumour had shrunk but didn’t really understand all that implied, especially as the CT scan had been done earlier than it would have been. Usually, the scan would be carried out 12 weeks after the end of the radiotherapy but because I’d become ill it was done to determine the cause of my cough and breathlessness – done, therefore, before the radiation had stopped working.

Although, it’s not definitive and nothing is ever certain in cancer, the oncologist said she is pleased with what the scan shows, saying it is as positive a scan as she would hope to see.

When I had the PET scan done back in July, the tumour was 7.5cm. It continued to grow between then and when I began chemotherapy. Although I didn’t write down its measurements then, it was large enough to cause a partial collapse of the upper right lung.  Now, it is 3cm and the mediastinal lymph nodes have also reduced.

Other good news is that there’s no sign of metastatic lung disease or spread to other organs. Looking at the remaining lump in my lung she hopes it is all dead tissue but “it never goes away to nothing”. If they are all dead cells it will stay like that but there is a significant risk that there could still be some active cancer cells I’ve been told that tissue will remain which will contain the dead cells that over time could and would grow. No crystal ball to say if this will happen or when. As ever with cancer, there are no certainties.

I’ll have another scan in eight weeks when everything should have settled down. I know nothing is ever certain in cancer and I remember our short-lived jubilation when Sue’s tumours reduced from the size of doughnuts to walnuts but I’m cautiously optimistic about the result. That’s a pretty brave thing to say for the glass half empty kind of person I am!

I’m going to be on steroids for the next six weeks for the pneumonitis. Unfortunately, the cough and breathlessness are not much better but the oncologist thinks they will improve gradually as the inflammation in my lung subsides.

Absorbing all the information is quite difficult and I’m so glad we have the discussion recorded and can listen again. If I didn’t have the pneumonitis causing such debilitating breathlessness I’d be absolutely delighted with the results. I moan about how radiotherapy is the gift that keeps on giving in terms of horrendous side effucks – but it is also the gift which is smashing up the tumour in my lung.  

Other good news – my mammogram came back clear. Being recalled would probably have finished me off.  I’m booked for my second Covid vaccination on April 10.

And the oncologist says I can go ahead with my hair appointment on 23rd April – and should be able to hug my son soon after that.

For everyone (all of us) who loves to see lambs!

In the midst of yesterday’s good news, my friend Sue passed away yesterday. She was diagnosed a couple of weeks after I was. In fact, she had thrown her bag in her car to drive up to meet me the day she had her scan result. Her tumours were in her left lung, mine in my right – “a right pair of bloody bookends” was the description we both thought of at the same time. Since then, we kept each other company on this very strange odyssey, sharing much laughter, frustration, tears, anger and love. Sue reached the end of the journey before I did and it is going to be hard to carry on without her.

But, perhaps she will always be my side.

MarySmith’sPlace ~ Cancer Diary #14 Scan results and what’s next?

Monday, December 07: From last Monday to this, the side effects continued to linger – nothing specific just a general mixture of ‘meh-ness’ and fatigue.  Unfortunately, the breathlessness became worse. We did one of my favourite circular walks between Rockcliffe and Kippford – an area known as The Scottish Riviera. Last April, I blogged about it, calling it a short walk of 3.5 miles. You can read the post and see the pics here.

Last week, on a lovely bright day, I could have cried with frustration at how difficult I found this same walk. I’d have said it was mostly level and yet it suddenly seemed to have grown hills I didn’t even remember. I had to stop to catch my breath and did wonder if I’d have to stay in Kippford while the DH walked back to Rockcliffe for the car. However, I made it.

A couple of days later, we visited Neilson’s Monument on top of Barstobrick Hill near Ringford.

The monument was erected by his son in 1883, in memory of James Beaumont Neilson who invented the hot-blast furnace in 1828, which revolutionised the practice of smelting iron. I’ve always enjoyed the walk there as, though the hill is not high, the views are wonderful on a clear day.

I had to stop a couple of times to get my breath back – I mean I do always puff when climbing any hill but I never used to have to stop on the way to the monument. Although I skipped back down the hill with no problems I came home feeling pretty miserable.

Walking is a huge part of my life – with a walking group (in pre-Covid days), with my sister and her dog, with the DH, on my own – and to feel this is being taken away from me is devastating.

By the weekend, the prospect of today’s meeting with the oncologist to hear the scan result and decide on next steps looming large I was in no mood to attempt a walk. I hardly slept last night and when I did it was to dream of conversations with the oncologist.

I told her I was extremely anxious about the scan result so she agreed to discuss that first – last time we had a medical examination and lots of questions about how I’d been, when all the time I just wanted to know the result. This time, we got to that bit first – and – cheers all round – the tumour has indeed shrunk. Unfortunately they said it was difficult to measure so I don’t know by how much it has shrunk – but the juggernaut has stopped and gone into reverse.

The summary of the report says: “Interval reduction in the volume of the right upper lobe tumour with re-expansion of apical segment of the right upper lobe. Lymphadenopathy is stable. No new lung lesions. Abdominal scan is unremarkable.”

Don’t put away your kick ass boots yet, though, as there’s four weeks of radiotherapy to be gone through try to continue the shrinking process.

The oncologist repeated what she said at the beginning of this horrible journey, she is not expecting the treatment to be curative and, though she said it bring a cure for 1 in 8 patients, it seems clear I’m in the 7 in 8 category who can hope for some extended time. She says at least a year or two.

I’m not sure how I feel – very happy the chemo has done something to shrink the tumour a bit. I’d have been utterly squashed if shoving toxic chemicals into my body with the resulting horrible side effects had done nothing. Very nervous about what’s coming next. Very worried the radiotherapy side effects will make me feel worse than I do now. I guess they have to spell out the worst-case scenarios but really – throat so sore when I swallow I’ll need morphine strength painkillers or even a feeding tube; permanent scarring on my lung causing breathlessness.

As you can imagine, it’s a lot to take in and process. We recorded the discussion and have already listened to parts of it again. Tomorrow – Tuesday – I go to Edinburgh for the planning scan, which does not sound fun – lying completely still with my arms above my head for twenty minutes – and wearing a mask. Not the kind of mask we’re all wearing these days but something over my entire face and neck. I wonder if I’ll have the courage to ask someone to take a photo for the blog.

Please, keep those kick ass boots at the ready. Mine are!

MarySmith’sPlace~Cancer diary#08 Scan results

Monday, October 26: I had a week of feeling really well (yay) alongside a week of worrying about the scan result and meeting with the oncologist today (not so yay).

I won’t keep you in suspense – like the oncologist did me by first asking lots of questions about how I’d been after the cycles of chemo and carrying out an examination before finally telling me. The scan results show the tumour is stable. While it has not shrunk it hasn’t grown any – not one of the many scenarios running through my head last night as I tried to get to sleep. Nothing has spread to any of my other organs.

The oncologist seems quite upbeat about this result although I can’t help feeling disappointed. I’d so hoped the tumour would have started to shrink, even if just a tiny bit. She’s recommending I go ahead with the next two rounds of chemo followed by another scan. If things are as she hopes then four weeks of radiotherapy would follow.

The radiotherapy doesn’t sound fun. I know they have to spell out all the possible side effects and no everyone gets them all or not as severely but – apart from tiredness (she says even more than after chemo) I’ll have a sore throat and may need morphine for the pain – or, worst case scenario, a feeding tube – and the scarring on the lung may leave me breathless on exertion.

This, if all goes well, could give me an extra couple of years (she did say “or longer”, but I’m afraid to be too optimistic) of relatively normal healthy life. Presumably until it all kicks off again as it must if they can’t eliminate the tumour entirely.

I’ve said I’ll keep going. The alternative is a few months and I would like a bit longer – there’s a book to finish writing, Cairn Holy to visit with Sue, and the Callanish Stones, a trip back to Islay where I was born, maybe even a holiday somewhere sunny. Seeing family would be rather nice – this self-isolation business is the pits. Of course, being able to do most of these is dependent on bloody, bloody Covid.

When I went into the first meeting with the oncologist I knew I had a seriously life-shortening illness and suspected I had months rather than years before me. I’d sort of come to terms with that. I was expecting to hear more about palliative care rather than treatment options. Dying doesn’t frighten me (though I’d prefer it to be painless). The oncologist gave me hope I could have more than a few months and I left the meeting feeling optimistic. This time it’s harder to be as optimistic – all because the tumour hasn’t actually got any smaller.

The next cycle is on Friday – if the blood results are all right. I think this constant wondering and worrying, having tests and waiting for results is one of the biggest downers.

Still, looking on the bright side, the oncologist did not say (my main worry) there is no point on carrying on. I can feel a degree of satisfaction the chemo has at least stopped the tumour in its tracks. Two more cycles might finally make it start to shrink.

There, now, I’ve talked myself round from feeling pretty down when I started writing this to edging towards feeling a bit more positive.