Update: 29 May to 
2 September 2022

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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.