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.

 Update: November 2024

2024 11 21

Hi everyone – it’s hard to believe that three months have flown by, since my last update.

I had my routine CT scan yesterday and received the results from Garth the mensch oncologist today: the bottom line continues to be that I’m fine (which matches how I’ve been feeling).

My bones are stable, most of the nodules in my lungs are slightly smaller, my organs all look normal, and all my blood tests are good.*

There’s a small “but”: a minimal amount of fluid (less than the last time it was there) has returned around my left lung, and the size of one of the nearby nodules inside the lung that Garth monitors has increased again (19mm in May, 7mm in August, and 12mm now).

There is no need to change my treatment (I’m staying on Tamoxifen), nor to do any monitoring other than my next three-monthly appointment.

As a family, we’ve been excited to celebrate Marjorie’s 90th birthday with Marjorie and a few of her family members, and Rosemary has been able to join us (all the way from Sydney) for this. Gail and I are also looking forward to welcoming several other visitors to Cape Town over the next couple of months.

Thank you all for your wonderful ongoing support. May we all be able to support each other for many years to come.

Lots of love 🌹❤️

(Photos: recent aspects of my life, including this morning’s circle dancing centrepiece. I had been slightly disappointed that it wasn’t rainbow weather, as rainbows have become important to me at the time of scans and their results. When I looked at this morning’s photo, it looked like I’d been channeling rainbows anyway.)

*For the purists among us: integrative doctors and allopathic doctors differ on what is a good Vitamin D blood test result. So my integrative doctor, David Nye, picked up on that and upped my dosage of Vitamin D (plus Vitamin K), and added some CoQ10: hey presto! After hanging around for weeks, the last vestiges of the “colfluchitis” (which I’m now convinced had actually been Covid) vanished in two or three days – except the loss of my sense of smell, which is still missing, but that’s a story for another day.

 

Update: August 2024

 

2024 08 28

Hi everyone –

No news has been good news, this time!

I’ve been feeling fine, and was hoping that this would match the results of the routine CT scan I had yesterday ... it did!

I had been wondering what the layer of fluid outside my left lung, picked up by my May scan, had been doing. Well, it’s gone! And so has the nodule that it was related to! (Was inside my left lung.) Vanished!

There is absolutely nothing new, and most of the lung nodules have decreased in size. The two that Garth monitors have decreased by 18% and 15% respectively.

So the Tamoxifen is doing its work. The niggly side effects (feeling slightly menopausal, etc) are manageable and – to me – worth it.

Right now, I do have a respiratory infection of some sort (and wrapped up warmly when Gail took me for yesterday’s scan), but it’s the first in exactly a year, as my immunity has returned to normal. It’s also exactly a year since the PET scan confirmed that the lymphoma was gone and that the chemo had also reduced the breast cancer nodules that we continue to monitor.

Yesterday I told Gail that I was hoping there’d be rainbows – there were, but she saw them only after she’d dropped me back at home. So I don’t have a photo from yesterday – this one is from a few weeks ago.

I want to extend the energy and symbolism of rainbows and hope to everyone who is dealing with any sort of challenge at the moment – many of you who are precious to me are facing challenges related to health, work, finances, home maintenance, aging, relationships, loss ... whatever they are, may you find the hope and courage to do and be the best possible in the circumstances.

Thank you, always, to all of you for your ongoing love, support and presence in my life.

Lots of love  🌹❤️

 

Update: July 2024

2024 07 10

 

Hi everyone – wow, already a month since my previous update. I’m feeling fine, with no more rib-region pain (it just faded away). And I’ve adjusted to the Tamoxifen now: feeling like myself again and just getting on with life, including (especially!) dancing.

We’ve been keeping as warm and dry as we can during the storms, and Gail is amazing with getting Neria out for walks the moment there’s a break in the rain. Quite an achievement as, according to my rain gauge (which I’ve at last put up), we’ve had almost 200mm since Sunday. (Photos: Sunday morning when it was all starting, and then a brief respite on Monday afternoon/ evening.)

My work life is a bit challenging right now, with two unexpected closures. (I’m very grateful that the work is to supplement my monthly pension rather than being my primary income!)

The work for one of my clients, editing their online legal training course content, ground to a halt about three months ago: the company has been liquidated (while still owing me for work already completed – they say I’ll eventually receive at least some of it).

And then, a week ago today, DM168 made the decision to stop proofreading all of the pages that I’ve been doing since I restarted there (lifestyle, wellness, arts & culture and a few more) for cost-cutting reasons. I worked my last shift on these pages yesterday, and am feeling sad about that today. All I’ll be doing for them from now on is editing the content of MavericKids (about 2 hours a week).

On the positive side, I’ve been enjoying editing some website and publicity content for an exciting enterprise recently launched by two long-time friends and associates of mine. (Thank you! You know who you are!)

I’m hoping to find further interesting editing and data analysis projects to work on.

I’m also using the time to complete the book I’ve been writing on my health journey, especially about last year. Most of what’s in it will be familiar to you, but watch this space anyway... I’m just starting the editing process with another long-time friend. (You know who you are, too! Thank you!)

Wishing everyone safety in the current extreme weather conditions (cold and storms here / heat and unexpected weather elsewhere in the world), the best possible outcomes for the many governance changes taking place all over, and success in every single initiative taken towards peace and compassion.

Lots of love  🌹❤️

 

Update: June 2024

2024 06 09

 

Hi everyone – just letting you know that I’m still standing (and dancing), after the first ten days of taking Tamoxifen. It’s never easy to discern what causes what, especially after being a bit knocked by finding out that the previous medication was no longer working. But I can assure you that Tamoxifen has not caused me to feel like jumping off anywhere (as the short-lived first one I tried in 2022, before Exemestane, did).

At the same time, I have had a few twinges here and there, which can be “flare” pain as the Tamoxifen starts to do its work (I learnt about this, first-hand, in 2022).

Since Friday, I have also had what feels like a sore intercostal muscle – I’m hoping that’s all it is, rather than a cracked rib (I do know that my ribs will always be at risk). If it isn’t improving by tomorrow, I will have it checked. I did manage to do (and teach) some gentle circle dances yesterday, and avoided any sort of pulling in the circle.

Several of you have been going through issues of your own: colds, flu (including swine flu), Covid, falls, medical procedures, ongoing cancer treatment, and tests ... I wish all of you an excellent and full recovery / best maintenance of wellness. And, for those who tend to overdo it ... please take time to stop and smell the roses!

Lots of love, always 🌹❤️

2024 06 11

Hi all – a quick note to say I had an X-ray today, and they couldn’t see any fractures or abnormalities in my ribs. So it does seem to be muscular, which is a relief. (Very early this morning, I had had a sensation that something had clicked back into place – the pain didn’t just stop at that moment, but it did seem to start easing. All these puzzles!)

Thanks, as always, for all the support and encouragement. I send mine to whoever needs it.

Lots of love 🌹❤️

 

Update: May 2024

2024 05 23

(The photo is from 10 days ago, when Gail and I went up the mountain in the cable car.)

Hi everyone – an update after having my three-monthly CT scan yesterday, and receiving the results at consultations with both Danie and Garth today.

This checkup was not the best I’ve ever had (I think last November’s one wins that prize hands-down), but nor was it the worst – by a very long way. It signals the return to exactly what I have been dealing with for almost three years now – breast cancer, as a chronic condition that we are managing, and where weird stuff is going to pop up every now and then.

For anyone who doesn’t like to read medical details: I’m basically fine, and we’re tweaking my treatment in order to keep me fine.

For those who want details:

From the lymphoma side: all is completely and totally good. There is absolutely no sign of lymphoma whatsoever. Yay yay yay!

From the breast cancer side: the neverending story continues. The existing nodules in my lungs are reasonably stable, but there is also a new one towards the back of my left lung, and there’s a thin layer of fluid outside that lung, near that nodule. In addition, one of the existing spots on my bones (this one on my right sacrum) has slightly increased in size.

To me, these phenomena constitute “weird stuff”, especially as I feel so well. (Although I did have some twinges in the region of that fluid a while back, but thought I’d pulled a muscle, especially when the twinges disappeared shortly after a Body Stress Release treatment.)

The treatment I’ve agreed with Garth is that we’re changing my medication from Exemestane (Aromasin) to Tamoxifen. The “weird stuff” is actually an indication that Exemestane has run its course. Garth warned me, when I met him, that this would probably happen. It’s rare for people with this breast cancer to be able to use the same medication for more than 18 to 24 months. I’ve had mine for 25 months. Please hold thumbs that I can deal with the side effects (or that I don’t experience any) from Tamoxifen! I have been able to deal with Aromasin (unlike the one we tried before it).

If Tamoxifen gets the “weird stuff” to subside, we won’t need to do anything more, for now. If it doesn’t, I’ll need radiation in both those areas.

We’ll check this in three months’ time, but I also have strict instructions to request a check sooner if I feel the need – if I cough or have more twinges in those areas. (Isn’t it strange how I didn’t feel the need for this week’s checkup at all, and yet it proved so very necessary! Early detection is key. Please remember that.)

After the elation of the past few months, I feel a little pricked-balloonish, but I’m sure I’ll soon feel more balanced again. After all, I’m alive and I feel well! I’m also thrilled at how well it’s going with the new circle dancing sessions (supplementary to all the existing ones) I’ve started up recently. Thanks to everyone reading this who has joined those sessions – I love having you there!

Thank you, all of you, for your ongoing love and support and encouragement. So much love from me to you! 🌹❤️

Update: April 2024

2024 04 19

Hi everyone!

No news does continue to be good news.

Yesterday was the first anniversary of the day I started what I’d sworn I’d never do: chemo. I wrote the following yesterday (and this is the first chance I’ve had, to send it to you):

I had already started coming back from the brink, five days before receiving my first chemo. But today, 18 April, is the “standout” date. It’s also auspicious because it matches two wedding/relationship anniversaries and two birthdays, of people who mean something in my life.

Without that treatment, I would have lived only a handful of weeks more. And with that treatment, here I am – writing this as Gail and I fly home from our first visit to Gauteng since we left, having seen many (but certainly not all) of the family and friends we wanted to see, and having demonstrated to the people we saw that I’m really, really fine (and not just saying so). We’ve also managed to dance (Gail once, me twice), reunited with many of the circle dancers we left behind in 2021.

Huge appreciation to Lindy and Paul, Jane and Piers, for having us to stay, and to everyone who made the time to spend precious moments with us. To everyone we didn’t manage to see: we’re sorry we couldn’t be there longer, and we hope to see you next time – or in Cape Town!

Your part in my process has brought me to where I am now. Thank you, always!

Lots of love 🌹❤️

(Photo: This rose used to live with us in Pretoria. It is now loved and cared for by Lindy. It smells divine!)