Update: November 2022

The outcome of my November CT scan and consultation with Garth the oncologist: stable.

This means:

·       No change to my bones, which continue to have been taken out of danger by the radiation done in March.

·       Slight increase in the size of some lung nodules (the three largest ones by 4%, 7% and 10% – less increase than last time).

·       No new nodules or bone metastases anywhere.

There is no reason to change from Exemestane yet, but I am going to stop the Vitamin C infusions for now: they probably make some sort of contribution, but not enough to justify the large expense and the time they take. I continue to use Iscador and to take various supplements, including liposomal Vitamin C.

The monitoring must continue to be frequent, so we’ve made my next booking for February 2023. If and when anything changes, we’ll base any modifications on what those changes are, at the time. The dual priorities will be quality and quantity – as I hope they are for all of us!

Many blessings on balancing the quality and quantity of all our lives.

Lots of love 🌹❤️

Update: 29 May to 
2 September 2022

- - - - - - - - - - - - - 

29 May

The only reason I haven't sent anything out for almost four weeks is that there hasn't been much to say! I've been feeling fine, and just getting on with work and dancing and various other things.

I'm now on day five of Exemestane. This one seems a bit better, but has generated its very own set of side effects – major discomfort in my diaphragm, midriff and digestive system. I'm going with Garth's idea that such discomfort is related to curative activity in there! I almost didn't go to dancing yesterday, but decided not to be a sissy. It was a lovely session (while the rain poured down outside), and the movement helped a lot.

Neria is in doggy hospital (since yesterday morning), on an antibiotic drip, after being extremely lethargic and weak for a couple of days. The vet isn't sure whether she picked up an infection at doggy day care, or whether it's something systemic. Hopefully we'll have her home and her usual busy self very soon, with an understanding of what caused this.

 

30 May

🎊Neria's back home!🎊

(Message written by Gail)

After the vet telling us first thing this morning that there was no change in her condition, it was a wonderful surprise when he phoned a few hours  later, after blood tests showing that although she still has inflammation somewhere and is fighting an infection, further tests on her liver and kidney functions didn't reveal any problems there. She had also eaten some chicken, after having shown no interest in any food over the last 2 days 😅.

So instead of just visiting her this afternoon,  as originally planned, we were able to bring her home with us 🥰.

Although still no definite diagnosis, she is on two types of medication to cover bacterial/viral infections. We have to go back to vet for more blood tests on Thursday.

So although she is still weak and sleeping a lot, we do feel she has turned a corner and look forward to having her usual obvious and very active energy around again soon 🤞.

Thanks so much for the caring thoughts, messages and well-wishes 🙏🐾💗

 

17 June

(Photos from Kirstenbosch, when it was pretending to be summer last week.)

I continue to be fine. I had a general consultation with Garth the mensch oncologist on Wednesday, and he explained that the discomfort I experienced when I started to take Exemestane is known as a flare phenomenon: symptoms often flare up in the region towards which a treatment is directed. This phenomenon has simmered down now and is much more subdued, and I'm pleased to say that I continue not to have the life-is-horrid emotions that the first one gave me. So I continue with this one, and – because it needs three months before we can start to assess it – I'll have my next CT scan in mid-August. I continue to use Iscador, to take various supplements, and to avoid eating soya and several other things.

I also continue to dance and, most of all, to appreciate your support and the good vibes that I feel coming my way, from all of you.

I also know that many people who I love dearly are dealing with all sorts of issues of their own, and I hope that you can feel my support and good vibes, right back at you!

Neria is well again, and it's a great relief that it doesn't seem to have been a systemic issue. (She has just managed to sneak into Layla's room, to have a quick snack of kitty kibble, and is very pleased with herself about that. We're not.) She thanks you, her fan club, for your well wishes, and sends paw prints and licks to all of you. 🐾

 

2 July

I hope everyone is doing ok, in these strange times.

As some of you know (via the various other groups in which we post), Gail and I have both had Covid over the past 10 days or so. Although it has been relatively mild, we're both still dealing with the after-effects (and marvelling at how the various symptoms cycle back, in turn – especially the runny noses! 😳).

I've been relieved not to get what some people refer to as "Covid kop", and I have managed to do my regular proofreading work.

It's been frustrating that we couldn't go out and enjoy the extraordinary summery weather of the past week, but also probably a good thing that it's now turned, so that we won't be tempted to overdo things at this stage.

We do enjoy seeing our own little piece of sky, though!

Much love, always, to everyone who is also dealing with health issues and other issues – personal, national, global. 🌹❤️

 

31 July

I think it's time for another update.

If you would like just the 'bottom line', here it is:

Overall, I'm fine.

And I appreciate the messages of love and support that I receive from time to time, as well as all the good vibes and thoughts that you send in my direction.

It's also amazing to me, to experience how one can move away from the initial panicky feeling (when everything is new) about what might happen, to a more constant feeling that, most of the time, life simply 'is'. If something weird or sore is going to happen, it's simply going to happen (and of course I'm not going to enjoy it at all), but right here and right now, life simply continues.

If you would like all the details, here they are:

As with many people (including people very close to us – you know who you are!), it's taking a while for Gail and me to get over Covid completely, although we are managing our usual type of exercise – circle dancing (the gentler dances) and walking. I've continued to work, during all of this.

We've also had our first houseguest since we arrived here, which was great fun, and also our first overnight mini-trip a week ago, to a most fantastic double birthday party and then an Airbnb in Hermanus. (Neria had a fantastic sleepover at the house of someone who looks after about ten dogs at a time, while Layla wasn't too sure about her night at the kitty kennels.) We saw many tails of whales last Sunday – that was about all the whales let us see! But also wonderful sea views.

Since having Covid, I've experienced what I would call the outer edge of asthma (last encountered as a child), especially whenever it's damp and cold or there's any sign of mould – indoors or outdoors (both very common in CT). I consulted my new (long story) integrative doctor, David Nye, about this, and he said that it's a symptom of Covid plus my recent radiation and current Exemestane treatments having lowered the immunity I've been maintaining until now. He gave me some remedies to boost my immunity – especially via my digestive system, which has been unbalanced by all this ('leaky gut' syndrome – I never knew what that actually meant, until now). He also recommended avoiding sugar (I don't eat a lot of that, anyway), gluten and dairy for three or four weeks. (Grrrrr!)

But, as I said above: overall, I'm fine.

My next scan and discussion with Garth the oncologist is in a month's time, so there's nothing new to report on that front just yet. (For anyone who counts weeks, this is a little later than originally planned because we have to give enough time to be able to check whether the Exemestane is working. What I can say is that its side effects continue to be bearable, with the occasional menopause-like symptom or two.) We'll also only start up Vitamin C drips again after the scan, after a 7-month break from them, so that we aren't trying to untangle whether the scan is telling us about the effects of Exemestane or vitamin infusions. The one thing that has remained a constant throughout, though, is Iscador. I am convinced that my experience of all of this would be very different if I weren't using it.

And the dance continues …

 

2 September

First and foremost, thank you to everyone who sent me birthday wishes, and apologies for not acknowledging these at the time! 🙏🏼 And thank you to Julia and family, who visited from London and helped me celebrate. (65? Who, me?!)

On Monday I had my CT scan, and yesterday my consultation with Garth the oncologist: overall, I'm fine (and expected to be so, for the foreseeable future). Maybe that's all you need to know. 😊

For those who want to know all the details, here they are:

·       The lymph nodes (which I hadn't mentioned before but should have) are all completely stable, having decreased in size between January and April.

·       There are no new nodules in my lungs (and haven't been for many months). Of the three largest nodules (the only ones they measure), one has remained unchanged, and two are playing yo-yo – by the last scan they had decreased, but now they have slightly increased, to more-or-less the size that they were for the scan before that. Something to monitor.

·       The best news of all is that my bones are stable, including "T6", one of those where a rib joins the spine, which could have caused big damage if left unattended: the work started by the radiation has continued – to the point that my bones have done real and significant healing, and they don't pose a danger to my long-term wellness. 🎉 (I must always watch out for those ribs, though!) I feel really blessed that my body responds to radiation in this way.

I also had an MRI scan of my head – that was a first! Given the reaction of someone I know well after he had one, I was rather apprehensive, but it was actually fine (if a bit noisy), and so was the result. (The reason I had it was that I sometimes get visual lights, so we needed to check whether there was anything there. Nothing. It's probably neck alignment, and I'm getting some help from a BSR practitioner for that.) I even choreographed a dance 💃🏻 to one of the noise rhythms, and felt a bit deprived then they moved to a different rhythm before I'd finished. Go figure. 😄

I have agreed to continue with the Exemestane, even though I often don't enjoy the side effects. I'm now going to restart the Vitamin C drips, and we'll monitor what happens. If necessary, there is a medication that can be added as a kind of a booster for Exemestane, although it does bring its own further side effects, so I'm trying to avoid it if I can! (BTW, I never read package inserts to see what the side effects are going to be … I wait to see what happens, which means that I don't create "self-fulfilling prophecies". What do you do?)

CT scans are also able to check whether there's lung damage from Covid, and I have none. I do still have some irritating after-effects of Covid, though, and will discuss them with David the doctor when I go to him next week to restart the Vitamin C drips – I'm sure they will help with this, too. (They have helped enormously after bouts of bronchitis in the past.)

My take-away piece of wisdom from yesterday's consultation is that what I'm living with is worth viewing as just one of many chronic conditions (like diabetes or high blood pressure). This resonates with how it's become for me. (When someone told me recently that they were sorry about what I'm going through, I almost asked if they were sure they were talking to me. At the same time, though, on a bad-mood-from-Exemestane day, that could feel a little different! 😅)

As always, thank you to all of you who support me and send good vibes. I hope you're OK, or thriving, or whatever is the absolute best possible for you.

Update: 3 March to 3 May 2022

My radiation, for two areas on my spine, started on 3 March. Thanks to Gail for taking me there, for moral support.

The first session was short and simple – the longest part was them positioning me carefully, to get it exactly right – and explaining what they were doing, all the time.

Once that was done, I could almost doze off while they left the room and moved the machine via their computers from the next room.

I was advised that, if there were going to be side effects, they would take a few days to arrive.

And I was to put maizena (cornflour) on my skin (who knew??!! 😄) in the two squares they'd drawn on my front, and the corresponding areas on my back.

The radiation sessions themselves continued to be fairly easy, overall, with a couple of challenges along the way. At first I wondered what all the fuss was about, but I soon found out: after one of the sessions, I experienced nausea for 4 or 5 hours and reflux in the middle of the night (both of which I'd been warned about). That was the worst, though, and the rest of the time I had a bit of nausea and general digestive discomfort. I also sometimes had slight twinges in my back from the position I had to lie in.

A wonderful thing was that there was absolutely no skin irritation for me. I faithfully put maizena on all the areas, after every shower (and speculated that perhaps it contained fairy dust!).

The tiredness also started to set in, early on, but I managed to do my work each week (Monday mornings, Wednesdays whole day, Thursday evenings) – sitting quietly at the computer, with breaks to move around (I did consider taking time off, but decided I would prefer the purposefulness and structure). We also had to prepare the house for viewings (our landlord decided to sell it), and the rest of the time I mostly lay around. Not my usual, at all! I mostly managed to go to circle dancing on Saturday afternoons. That's what I love about circle dancing – the variety of dance tempos, and also no pressure to do every dance.

It was a bit frustrating that the weather in CT was exquisite during the radiation (I wasn’t allowed to swim or get too much sun).

The radiation machine itself was quite amazing. I sent a photo to my family, explaining that it rotates right round the bed, even sending rays up through the bed. My nephew, Tevya, sent this response:

If the ray machine circle dancing around the bed gives you grief, remind him that your rays of goodness are more than strong enough to blast him into nuts and bolts, and that you’ve been circle dancing since before he was a circuit board in an MIT student’s eye. ☀👯‍♀️

 On 22 March, the day before my last treatment, I had my second consultation with Garth the oncologist: he was happy to hear that the side-effects have been manageable; also that was experiencing almost no bone pain. (The consciousness of moving carefully is always there, but this did start to feel so much better!) He explained that we needed to let the effects of the radiation settle in, and we’d do a scan in early May to assess them. I will have regular scans for the rest of my life. (I'm sure that, at some stage, I'm going to start glowing in the dark! 😄)

The rib that alerted everyone to these issues started to behave really well (no pain), but if this ever changes then maybe there will be some radiation for it, at some stage.

I agreed to start another thing that I thought I'd never do – hormone therapy in the form of Letrozole tablets – a week after the end of the radiation. He warned me of a possible second menopause! (Maybe; maybe not; it affects everyone differently. And if I were to find Letrozole unbearable, there would be a couple of others to try.) This is intended to assist with balancing the quality and quantity of my life, for however long this is possible. It is a systemic treatment, and is intended to help with the lung nodules as well.

My big learning continues to be that, even if I did nothing at all about any of this, I would have a few years to go – but they would be increasingly difficult years. This way, we try to maximise the quality of the coming years, and possibly add a couple of years in the process.

18 April 2022

It's now almost four weeks since the radiation treatments ended, and the effects took quite a long time to wear off – especially the nausea and fatigue.

I started trying the Letrozole tablets (hormone treatment) a week after the radiation ended, as advised. All I can say about that is: a great big EISH!!!! It was terrible. Perhaps a bit too soon, as well – the side-effects started overlapping with the after-effects of the radiation. Over the five days I tried it, everything got progressively worse, especially an increasing depression. After those five days I gave up, and decided first to let the radiation effects wear off completely. The depression started lifting, and life felt worth living after all. So I'm just regrouping, and holding off on the decision about whether to try again – maybe the next step is to try one of the other ones.

My next CT scan is in 11 days' time (judging by how I feel now, I think it will show some good results), followed by a consultation with Garth, where we'll also include a discussion about the hormone treatment.

I continue to use Iscador (and am happy to have found a source of it for 40% of what I've been paying – a huge saving per year). I was advised to hold off on the Vitamin C infusions until well after the end of the radiation, and I'll restart them now – Gail and I have both managed to catch a viral infection, and it will help me with that, too. (We don't think it's Covid, but hers has been quite nasty while mine has just started and has been light thus far.)

By the time I would have been ready to swim again, the sea was far too cold: better luck next summer! And Gail and I are so sorry about what has been happening in other parts of the country, with the torrential rain and flooding. It's just awful. La Niňa, it's time to ease off now!

Sending healing and strength to everyone who is dealing with their own issues at the moment, and much love and appreciation for all the support. 

3 May 2022

My post-radiation CT scan was on 29 April (and my biggest achievement was holding still and not coughing, after that viral infection had turned into a hefty case of bronchitis for both Gail and me, and mine has only subsided since the weekend).

And then today, 3 May, was the consultation with Garth, to look at the scan results and decide on my next steps.

We were both pleasantly surprised by the results! Here they are:

·       There is absolutely nothing new, and absolutely no spread or growth of anything that was already present.

·       My bones show a good response to the radiation, in that there is the type of sclerosis that indicates that healing IS happening. (Coupled with this: I don't have any bone pain at the moment, which also means there's no need to do anything for that rib at this stage.)

·       One of the two biggest nodules in my lungs is unchanged, while the other has decreased in size by 20%, and the two other measurable ones have each decreased by 10%.

Garth isn't sure what the latter can be attributed to. It could be the five horrid days of Letrozole (and my experience of feeling so horrid could have been caused by some dramatic activity in there!). Or it could be Iscador. One thing I'm certain of, and I thank all of you for this from the bottom of my heart: your love and support is definitely helping me in a big way.

We're now going to try the hormone treatment called Exemestane. (When I asked Garth if it would be stupid of me to just continue, for now, without hormone treatment, he said: "Yes. It would." So I decided I'd prefer not to be stupid.) I also continue with Iscador, and with boosting my immunity in general. I'll see Garth again in six weeks' time, and will have the next scan at the end of July.

The Dance of Life continues: see you there!

(updated 25 February)

Update from Yvonne,
January – February 2022

Continuing from 2021_update:

 

My CT scan was on 27 January. This is what I wrote the next day:

 

As with so much in life, the results (as discussed with my doctor, Raoul Goldberg) are a mixed bag.

 

The good news: absolutely no trace of anything at all in any new places (organs or bones), and no mention of one of the two lumbar vertebrae where there was a shadow last time – so there's no spread into anywhere else, and I'm still not in any imminent danger.  

(A later update to this "good news": I did discover, shortly afterwards, that the picture was not quite so rosy: although I was still not in any imminent danger, there was, in fact, one new development – a new area where my thoracic rib T7 joins my spine on the left.) 

The not-so-good news: The nodules are still in my lungs, and the most pronounced one is showing a very small amount of growth (about 1 mm = 5%) over the 4 to 5 months since my previous scan.  
(And see the update in the previous paragraph, which means that my bones are actually part of the not-so-good news.)

The neutral news: No change, including no worsening, in my ribs and the other of the two vertebrae – my bones are stable, for now. 
(Update: not quite true – see above.)

 

So the SPDT and other treatments are not miracle cures in my case, but they do seem to slow everything down and keep me generally stable at present. At the same time, that won't last forever: I'm reflecting on everything and deciding what to do next – it's helpful that I don't have to rush into anything. Although I don't usually engage much with allopathic medicine, I will include a consultation with an oncologist on 14 February (I have a referral from my doctor) and will listen carefully to the options that are suggested: as Dr Ndhluni said when he phoned me to make sure I had the results, "You can go window-shopping and you don't have to pick anything" (although I know he's hoping that I will pick something!). There is also a further natural medication that I could consider taking, in parallel with my other treatments … more about that if I decide to try it. (For completeness of info: SPDT was a once-off – I'm glad about that, for various reasons!)

 

I realise that, painful as it was, I'm lucky I cracked that rib in July – there was absolutely no sign of anything until that day, and it could have continued silently until it was too late to have any options at all (of course, however, sticking one's head in the sand is also an option … there have been times in the recent past when that has looked rather attractive to me). But overall, my wish for all of us is that we continue to have options, and that we choose as wisely as possible and continue to do – and to be – the best that we can each live with.

* * * * * * *

25 February 2022

 

Having avoided oncologists all my life, I have had to revise some of my opinions after meeting Dr Garth Davids last week. He is a mensch – straightforward, helpful and kind. He spent all the time with me that I needed, in order to look at what is happening, answer my questions and discuss options.

 

He agrees that my life is in no imminent danger at all (although I'm not going to have a long, long life – reading between the lines, I estimate that I have 6 to 8 more years), but he stressed that my bones are going to give me a seriously hard and painful time – and are going to fail me long before my life is over – if I don't give them a really huge boost. He strongly recommended radiotherapy, especially for that T7 rib (I could land up severely disabled if we don’t give it some help) and I have decided to go ahead with this (ha ha – I’ve had to revise my nasty opinions about radiation, too!). It’s going to be 12 sessions over less than 3 weeks, probably starting on 3 March. A few days ago, I went to the planning session where the radiologist marks where the beams will go, and am now sporting tiny, permanent pinprick tattoos in a couple of places. Radiation usually has at least some side effects, but they generally last a maximum of about 2 weeks. People are encouraged to continue to do all their own normal activities – for me that includes circle dancing – unless they feel extra tired (but the tiredness is usually manageable).

 

Garth made a few further recommendations for after that, which I will think about.

 

He also told me that chemo is not recommended for this type of cancer. While I’m sorry for those who might want to try it, this is a weird kind of relief for me, as I don’t have to fend off anyone attempting to give me that stuff. His considered opinion is that this type of cancer can't be cured, but it is non-aggressive and slow, and can be managed. There is no one-size-fits-all pattern, but the latter is how it usually goes.

 

This is all quite strange, and my immediate response is, "Who, me??!!" And yes, this is me. Garth says I should absolutely not feel like a failure in any way. Hmmmm ... I have been feeling some of that. He feels that I've now maxed out the less invasive stuff, which was all worth a try. (At the same time, I’m not going to try the further natural medication that I had considered briefly. Right now, even I agree with the “maxed out” opinion: while I’m going to carry on with the supportive and strengthening complementary treatments – like Iscador – I’m not adding any new ones into the mix at this stage.)

 

So much to process ... at the same time, no regrets about what I've tried.

 

* * * * * * *

There are two poems that have always meant a lot to me – I think you’ll see why:

 

The Summer Day

by Mary Oliver

 

Who made the world?

Who made the swan, and the black bear?

Who made the grasshopper?

This grasshopper, I mean—

the one who has flung herself out of the grass,

the one who is eating sugar out of my hand,

who is moving her jaws back and forth instead of up and down—

who is gazing around with her enormous and complicated eyes.

Now she lifts her pale forearms and thoroughly washes her face.

Now she snaps her wings open, and floats away.

I don't know exactly what a prayer is.

I do know how to pay attention, how to fall down

into the grass, how to kneel down in the grass,

how to be idle and blessed, how to stroll through the fields,

which is what I have been doing all day.

Tell me, what else should I have done?

Doesn't everything die at last, and too soon?

Tell me, what is it you plan to do

with your one wild and precious life?

 

 

I Will Not Die an Unlived Life

by Dawna Markova

 

I will not die an unlived life.

I will not live in fear

of falling or catching fire.

I choose to inhabit my days,

to allow my living to open me,

to make me less afraid,

more accessible;

to loosen my heart

until it becomes a wing,

a torch, a promise.

I choose to risk my significance,

to live so that which came to me as seed

goes to the next as blossom,

and that which came to me as blossom,

goes on as fruit.

(I read this one out at the celebration of my fiftieth birthday)