Update: May 2025
Hi everyone -
I hope you are doing well, or at least managing to deal with whatever life throws at you.
Today was quite a day for me!
I had fondly believed that by now I would be taking the new medication, would be over the effects of radiation, and would no longer need pleural taps. So today was the day my morning circle dancing group reconvened, 11 weeks after we last danced together. I had requested help from Gail, Vonni and Julia – this turned out to be the best possible plan, as none of my fond beliefs had been realised.
We had a wonderful session, with these three people and several more “holding the circle” (and me on the sidelines due to shortness of breath) – thank you all!
The new medication (oral chemo) will only start next week or the week after, as the blood test takes a long time to run.
I’m still tired, with slightly odd digestive cramps and discomfort, from the radiation.
And I needed a pleural tap urgently: they let me know, just before dancing, that it would be this afternoon! As usual, it was seriously horrible, and yet again it was 2 litres, and I’m still here to tell the tale.
In the time between dancing and the procedure, five of us – Gail, Julia, Maxine, Winnie and I – had a brief and beautiful time at Chart Farm.
I’m now resting at home with our little helpers.
Thanks so much for your good vibes and prayers and wishes – they are with me all the time.
Lots of love 🌹❤️
A weird thing happened, though: all hell seemed to break loose on Wednesday, my first day of chemo, together with spiking temperatures that night, and I thought I would never be able to continue. They asked me to pause the chemo and did yet another set of blood tests yesterday – they found that I have a hectic tummy bug, unrelated to the chemo! 😳
Chemo is paused until we sort this out (with the fistfuls of meds that I've become so used to in recent years 🙄).
Life is complicated!
Lots of love 🌹❤️
2025 05 22
More than a week after it started, the symptoms of this tummy bug are still coming and going. The medical team is going to do further tests (don’t ask!) to see exactly which bug it is.
As the bug has not left yet, I have not been able to start the oral chemo. We’re now aiming for very early next week.
There’s also the other ongoing question of my breathing, and I am again quite breathless (although our lovely new little oximeter confirms that I’m not short of oxygen!). Garth has requested that I try not to have a pleural tap at this stage. I’m very happy to oblige, even though my breathing doesn’t enjoy that so much – especially each evening. He wants this because we need to see, as quickly as possible, whether the chemo will start to help reduce the pleural effusion.
There have been some recent glimmers (this word is being popularised these days, as the opposite of “trigger” – it’s about the moments in one’s life when one feels joy, happiness, peace or gratitude) for me, the main one being that we celebrated Gail’s 70th birthday on Sunday, and I was able to be part of her small family lunch at Seaforth.
Today was both frustrating and glimmering: I wasn’t feeling well enough to teach (or even be at) my morning circle dancing group. So, for the first time in our 23 sessions, I handed over entirely to Gail and Vonni to run the session without me. The glimmer is that they did it beautifully (as I’ve heard from many people). This is what I wrote to the members (some of whom are also reading this, now) after today’s session:
My huge thanks and
appreciation to Gail and Vonni, who ran the session so well in my absence, and
to all of you for supporting them in many ways – with both the dancing and the
logistics. Thanks to Bernice, who made a beautiful centrepiece from the
“ingredients” I sent along, and to all the people who regularly help us to set
up and pack away.
(Photo: the
centrepiece.)
Thanks, as always, for your ongoing love and support.
Lots of love 🌹❤️
2025 05 29
16:50
Hi everyone –
Thanks for your support after my last message!
A lot has happened in the past week:
The initial response from the pathology test on my stomach bug was that no culture had grown, but that Dr Carissa Van Aarde (Garth’s other GP assistant) was going to prescribe an antibiotic anyway. I heard from her, today, that a culture had actually grown: salmonella! No wonder it was so bad and lasted so long.
I can only start the oral chemo after the course of antibiotics is complete and I have seen Garth again: early next week, if all goes as planned.
With all of these delays and increasing shortness of breath, I have not been able to avoid a pleural tap. This time, I’m going to have it as an inpatient, as that’s the quickest way for them to find a slot for me – if not later today (which is getting rather unlikely by now), then as soon as possible tomorrow.
So here I am, in “my” unit (haematology) of “my” hospital. Not quite my favourite “room with a view”, but actually next door to it in a four-person room. (Appreciation to Gail for going home to pack and bring my overnight bag! I didn’t expect to be admitted.)
This time, I have been given a sedative to put under my tongue if the pleural tap becomes intolerable ... let’s see.
There have been some glimmers over the past few days: circle dancing on Saturday (mostly chair dancing, but joining in when it was very sedate); a good friend’s 70th afternoon birthday gathering on Sunday; lovely photos of Rosemary’s family gathering in Sydney for Jonno; a visit from Julia on her return to Cape Town after a brief time in Gauteng and Kruger.
All in all: further lessons in patience. One can’t rush these things, no matter how much one wishes to!
Sending huge best wishes to everyone who is dealing with their own lessons in patience at the moment. There are many of us.
Lots of love 🌹❤️
19:50
They surprised me by taking me for the pleural
tap at about 17:30!
This one was done sensitively and gently, with a cushioned surface to lean on, to my left, and an Ativan taken about 20 minutes before we started. Being late in the day, nobody was rushing anybody and we could chat while it happened. Around about 1.5 litres I did start coughing as usual, and they gave me some oxygen and some water, but I didn’t experience the almost-fainting, utterly desperate feelings of the previous three. I think the total amount was just below 2 litres.
Very tired now, but was able to eat the supper
that had waited for me for about 90 minutes!
So glad it’s over, and thanks for all
the good vibes! 🌹❤️
2025 05 30
Can you believe, I've just had pleural tap #5! This morning's X-ray suggested that this should be done, which was proved when a further litre emerged. Today’s radiologist was happy to use the same method of making it as comfortable as possible, which helped a lot.
I now weigh 3kg less than I did this time
yesterday! (Not a recommended weight-loss method, though!)
The in-hospital physio gave me an excellent session this morning, and I will continue doing physio exercises from now on. (Interesting what you can access when you're an inpatient!)
I’ll spend tonight here again, and will have further physio tomorrow. Thanks for all the love, and enjoy whatever the evening holds for you.
Lots of love 🌹❤️
2025 05 31
Had a great physio session today. The physiotherapist recommended that I should do gentle walking every day (as there's no further sciatic pain), and also go for further outpatient physio (I will).
Thanks to Gail for bringing me home, and to Layla for welcoming me (Neria isn’t yet home from doggy daycare).
I hope the circle dancers are busy enjoying a fantastic session, right now!
Lots of love, always 🌹❤️
