Update: April 2025

 

2025 04 07

Hi everyone – 

Some of you have asked whether my radiotherapy has started … not yet! I had the planning scan on 28 March, and heard at the end of last week that the treatment is scheduled to start late tomorrow (Tuesday) afternoon, for 8 to 10 treatment sessions. If it’s 8, it will finish on 17 April; otherwise on 23 April. My next CT scan is planned for 5 May.

The sciatica-type pain is still with me, but it’s much less and only intermittent; I’ve been doing some seated dancing (and the tiniest amount of gentle dancing) at Saturday circle dancing.

Last Thursday, I finally acknowledged that the Letrozole had crept up to being a BIG EISH for me – as bad as it was three years ago. So I stopped taking it. Continuing with my life’s journey has started to feel like a good thing to do, again, instead of the grey-blanket feeling that had become the price to pay for potentially holding some nasty developments at bay. (The leg cramps, a side effect of both Tamoxifen and Letrozole, have already almost completely vanished.) The moment I stopped taking that EISH, I let Garth know that we need to make our next decisions: hopefully I’ll be able to find out more when I’m there tomorrow.

There was a rainbow for a few minutes this afternoon – the first one in absolute ages.   (Photo: origami that Gail did, five years ago, with a rainbow from one of our suncatchers.)

Thanks, as always, for all the love and support. It means the world to me.

Lots of love 🌹❤️

Update: March 2025 

2025 03 11

Hi everyone –

At the start of this journey of mine in 2017 I wrote, “Life is what happens when you’re busy making other plans.” (By the way, that quote from 1957 is the same age as me – it’s by writer Allen Saunders.)

When I sent out my update after my consultation with Garth, I didn’t mention something else I was dealing with, although many of you know it by now – due to its comprehensive interference with all my plans ever since!

Sciatica. Ouch!

The pain had started that very morning, after my push-me-pull-you swim in rough waves at Muizenberg the evening before.

After four Body Stress Release sessions, it’s improving but by no means gone. I can sit or lie flat without any pain, but walking, driving and dancing aggravate it, which is maddening! I’ve had to cancel one circle dancing session and miss three others. I’m missing the dancing hugely! (Confession, though: during the first week, I went ahead with two long-standing special circle dancing commitments, which I absolutely loved but which left me in agony. A hard lesson.)

So by the time I started the Letrozole it was almost a non-event! (Appreciation to the people who asked how it was going, even before I started.) I am feeling quite daunted at the moment, but my guess is that – even if there is some “eish” – it’s more about the sciatica than caused by the Letrozole. Especially as I’m fine when good things are happening – and they do!

This past weekend was one leg of my Class of 1975 reunion, at the school for Founders Day where they especially honour the 50-year cohort, and then a dinner on Saturday evening. Most (but not all) of it organised by me. (Some of you reading this know all about it, either through being there or through being part of the plans for September – thank you!) Also our dear friends Jimmy and Alec from the UK have just arrived for a brief visit, and it’s wonderful to see them.

Last but not least, I’m able to sit at the computer with no issues, so have been able to work and do various other things, including making a start on finalising my book – it’s back from my wonderful editor, Liz M. Should we add a chapter on sciatica? Nah ... don’t think so. But perhaps we should emphasise the lesson of patience a bit more: it seems that this hasn’t yet been thorough enough.🙄 Not much fun for Gail, either.

This book-writing process is so much more than I’d expected. I had believed it was ready to roll until Liz pointed out – sensitively, perceptively and kindly – how it could be improved. So that’s what I’ve started on, now. Next comes taking the plunge to publish it.

I hope you’re navigating your way through wild seas more successfully than I did – I’d love to know how you are!

Lots of love 🌹❤️

2025 03 20

Hi everyone –

Thanks for all the support after my previous message!

It had not occurred to me that the sciatica could be linked to cancer-related spinal issues, but two doctors I’m close to (thank you – you know who you are!) recommended that I should let Garth know what was happening. He immediately requested an MRI of my full spine, which I had yesterday. He has just phoned me with the results (yes, way after hours – that's how he makes sure he gets round to everyone). Even though it’s a mixed bag, as I've come to expect, I'm also feeling reassured. Here we go:

A lot is going on in my spine (bones and discs), to do with degeneration related to my age and, especially, to metastases (even the ones that have been successfully dealt with can also be part of general weakening). It’s extremely likely that there’s an undisplaced fracture (which means that the parts of the bone aren’t misaligned) in my left sacrum, as there’s inflammation in that area and the symptoms are the same as the pain I have.

A “normal” fracture of a healthy bone would be left to self-heal, and the Letrozole might possibly also help with healing over the next while, but radiotherapy will help more quickly and will be able to target the bone deposit that’s causing the problem. We are going to go ahead with this. It’s complicated by the fact that I have already had radiotherapy on my left hip (the ileac blade) and Garth must be cautious about cumulative treatment in the same area, so he has to calculate a reduced radiotherapy dose and target the placement very finely. I’ll have a preparatory scan in a week to 10 days’ time (we have to wait for the medical aid authorisation), then Garth will calculate the dose, and then – all going well – I’ll have about 8 to 10 treatments, starting in two or three weeks’ time.

At present, I must continue to do very little exercise: no going for walks; no dancing (other than minimal teaching when standing, or some seated dancing); no driving for now; no swimming in rough seas!

So why am I reassured?

Because I no longer feel doomed by this.

I no longer have the fear that my next step is into a wheelchair. I can look forward to dancing again. These are worth a great deal!

Wishing everyone a Happy Equinox (here in Cape Town it was at 11:01 today), and the South Africans a Happy Human Rights Day tomorrow.

(Photo: my patchwork trousers – a favourite. They remind me of me: we keep putting new patches on the bits of me that have worn out.)

Lots of love 🌹❤️

 Update: February 2025

 

2025 02 21

Hi everyone –

The mind-body connection is a very interesting one. When one feels and looks very well and is able to function just fine, yet the results of some monitoring at least partially contradict that, it’s hard to know what to make of it all!

I had my routine CT scan on Wednesday, plus the usual consultation with Garth the mensch oncologist today. He told me that the scan shows we’ve already reached Tamoxifen’s sell-by date for me, as there are a few new (small) nodules in my lower left lung, no reductions in the size of the existing ones, and the fluid outside that lung has slightly increased in volume. If the fluid is left untreated, it’s eventually going to cause some nasty symptoms.

At the same time, it’s not all bad: my bones continue to be good, with no need for radiation or anything like that. (And another not-bad thing is that stopping Tamoxifen may also bring an end to the horrid nightly leg cramps that have been its main side effect.)

So, what to do next? Garth, Gail and I had a long and detailed discussion about my options, and ultimately agreed that I would move on to Letrozole. This is the same anti-oestrogen drug that I tried three years ago and described as “a great big EISH” at the time. But there were several other factors that could have caused my abreaction just then, and a lot else has changed for me, so we are trying it once more. If the “EISH” factor kicks in again, we’ll move straight on to the next anti-oestrogen drug, Fulvestrant, which is an injection (typically monthly) rather than an oral treatment.

I have also reconciled myself to the need to take a CDK4/6 inhibitor, which is an oral drug to block the activity of cyclin-dependent kinase (CDK) 4 & 6 proteins that would otherwise continue to increase the growth of the cancer cells. It is always used in conjunction with an anti-oestrogen drug, and usually leads to a high response rate that lasts several years. However, it can only be used in conjunction with one anti-oestrogen drug per person. So, if I start it in conjunction with Letrozole and then Letrozole stops working for me, it’s also an immediate farewell to the CDK4/6 inhibitor. Whereas if I only start it if and when I eventually move on to Fulvestrant, I can continue to use it until the end of my time on anti-oestrogen drugs.

And after that?

I had thought that this would be the end of the road, but it’s actually not the case.

Garth had once told me that chemotherapy is not recommended for oestrogen-senstive breast cancer. Over time, though, he’s unpacked the nuances of this for me. What he meant was: chemo – even the hard-hitting RCHOP chemo that I had for lymphoma – can’t cure oestrogen-sensitive breast cancer or its metastases, so it’s pointless going through all that when the aim is to manage the cancer rather than to cure it. However, once all the anti-oestrogen drugs have been exhausted, an oral chemo that is much gentler than RCHOP (and doesn’t cause hair loss etc) is available to me.

All discussions with Garth have the main aim of balancing quality and quantity of life, and he is as keen as I am that I should be able to continue dancing and living life to the full, for as long as possible.

As always, huge appreciation to all of you for your ongoing connection with Gail and me, and for the support you give us, in so many ways.

(Photo: Gail found this self-seeded portulaca this morning in our little courtyard. To me, it says: “Keep on keeping on!”)

Lots of love 🌹❤️

PS: Although these messages are mainly for updates on my health etc, I feel that it’s important to mention something that has hugely impacted the South African circle dancing community, including me: the loss of the wonderful Phil Smith at the beginning of this year, after he’d had a brain aneurysm and an operation on it in August and had been in hospital for five months. He and I were exactly the same age. Phil leaves a legacy of his choreography of about 80 beautiful dances, plus videos of many of them, plus the memory of his facilitation of the Cape Town Saturday sessions. He also leaves a huge hole in our lives: we miss his love of life, of dancing, of family and more. If you look back at the photos of my “I Survived” party, you can see Phil in all the photos of the dancing. He’s the tall, thin one in shorts. Fly free, Phil. Love from me, always.