Update: July 2023
7 July 2023
Hi everyone – a quick update to say I'm doing well, and to thank you for your ongoing love and support.
Last week, after the hospital episode, I spent about three days in bed at home before my energy started to return – just in time for the end of my "quarantine" week and the arrival of my sister Julia, from London! So good to have her here! (She's primarily here to spend some time with me, so she's not sure she'll get to see everyone she'd love to have seen.)
Next Monday, I'm going for my first CT scan since the lymphoma diagnosis – our first opportunity to start gauging the effect of the treatment. I'm cautiously optimistic (and so is Danie).
Then, on Tuesday, all going well, I have Chemo No.5, and also the results of the CT scan some time during the chemo treatment. I'll keep you posted.
Lots
of love, as always 🌹❤️
2023 07 11
Hi all – yesterday's scan does indeed show good things!
(Photo: late Saturday afternoon, from Sunrise Beach – it did indeed seem like a good sign.)
Most of my lymph nodes are back to normal lymph node size. This means that some have reduced by percentages like 60%!
The chemo has also reduced the size of the nodules associated with the breast cancer (these have been present for two years now), by an average of about 10% since the previous scan - this is what we had hoped might happen.
The information given by a CT scan is all about size. It doesn't give information about how active each node is – this will be checked using a PET scan at the beginning of September (when the dust has settled – Danie's words – after my last chemo, a month before on 1 August).
My blood counts for today's chemo were good (and we could see that the recent blood transfusion had helped), so I followed my flow chart – the longest part being "Wait" (for stickers at admission), but I had both Gail and Julia to entertain me! (Actually, we spent most of the time discussing the scan results, which Danie had just given me).
I've been in the chemo ward since about 11 (my turn came at about 11:30), and it will be finished by about 6 (actually, it took a bit longer in the end).
Thank you for all the love and encouragement you've been sending! 🌹❤️
(Photo: Banksia in the hospital parking lot)
Cape Town in winter. Germs, germs, germs galore – which are rather threatening when one is neutropenic. (Neutropenia is a follow-on of chemo – it's my quarantine phase, when I have few infection-fighting white blood cells for up to 10 days.)
Somewhere out in the world, before my current neutropenic phase started, someone managed to give Gail a hectic upper respiratory infection. We isolated from each other at home, and I thought I'd managed to duck it. But suddenly, yesterday evening, I felt it arrive; my temperature spiked, and the hospital (where I am now) said I should get here immediately. So we both double-masked and wrapped up, and Gail rushed me here.
Then followed all sorts of checks, including a late-night chest X-ray, and I was eventually admitted to an isolation ward, which is completely tucked away.
Although it has taken until now to see Danie, it's been clear that he's been constantly issuing instructions about me to the nursing staff since last night. He has now confirmed that my chest X-ray was clear, and that – thus far – I don't have a major infection (and definitely don't have Covid) but I do have an extremely, extremely low white blood cell count. They have also done one further infection test, for which results will take a while to come through.
Danie said I'll be here for at least 5 days, and thanked me for getting here so quickly last night. (I thank Gail for her part in that!)
He also confirmed what I was told this morning: I need a blood transfusion, which will start late this afternoon. (For completeness of info, Julia had come from where she was staying, to take me to my Day 7 check on Monday, and they had said it was inconclusive and I should come back tomorrow – Thursday – to see whether I would need a blood transfusion. That has, of course, been overtaken by current events.)
It's still taking a lot of effort to get my temperature down. For me, this has been the most scary, because of my total lack of resistance to any infections that could yet show themselves. But I'm just keeping still and warm (reading and dozing), and keeping on keeping on.
Please forgive me if I don't respond to whatever messages you might send. I just wanted to let you all know what's happening, and to take you on my journey with me. It means more to me than I can say, that you're walking alongside me.
Lots of love 🌹❤️
Hi everyone –
First, a huge thank-you for all the love and hand-holding that you're sending in my direction!
And second, just letting you know that my blood counts have improved enormously (red thanks to the transfusion, and white thanks to the medication).
Temperature management is still a challenge – it goes up and down a lot, especially at night.
Initially the feedback was that I "definitely" didn't have Covid, but Danie has decided to revisit that, and they've now sent off a swab for specific Covid testing.
I continue to keep as still and as warm as possible.
Lots of love to all of you 🌹❤️
(Two hours later)
Hi
all – just letting you know that I do have Covid. 😢
Waiting to hear what meds are now going to be added to the array that I'm already receiving.
Lots of love 🌹❤️
Hi everyone, from my second-favourite 'room with a view', in my usual ward that has come to feel like a second home. (I was transferred here yesterday, when this room became available.)
Thanks again for all your greetings and encouragement – I have read every single one of them and have taken them all to heart. Sorry about not doing individual replies!
I started the Covid medicine (Paxlovid – it's bitter!) this morning – hopefully it will help soon, including getting my temperature to stop spiking.
Many of you have asked after Gail: she's at home, dealing with many of the same symptoms as mine, caring for Neria and Layla, and also keeping on keeping on.
I know that we're not the only ones facing health and other challenges, and I send love and strength and good vibes to everyone who is dealing with any sort of challenge.
(I wrote this message using a mixture of voice to text – thanks to Julia for telling me how – and awkward left-hand phone management, because they have moved my drip onto my right hand, which is my extremely dominant hand!)
Lots of love 🌹❤️
Greetings from my room with a view! Thanks again for all your wishes, thoughts, photos and good vibes.
I don't need a drip at the moment, so I can use my phone properly again! It was interesting to experience, even in this confined environment, just how much of the world (physical and technological) is set up for right-handed people. Respect to all the 'lefties'!
(A weird discovery: Without the drip machine by my side, day and night, I'm no longer finding myself wanting to sing Elton John's 'Yellow Brick Road' and wondering why ... it suddenly dawned on me a couple of days ago that these machines all include the same sequence of notes from this tune in the notes they play, very very softly, the whole time they're in use. After 3 months in and out of hospital, I finally realise this!)
My temperature is at manageable levels at last, and I'm coughing a bit less. This morning I felt quite wobbly and daunted by the ongoing diarrhoea, ironically caused by both Covid and the Covid medication, but the diarrhoea meds seem to be starting to help, and I'm also no longer wobbly.
Danie is happy with my progress. He will probably request a further blood transfusion while I'm still here, and only discharge me on Tuesday. He's trying to ensure that I'm ready for my last chemo, the following Tuesday (although, if a person isn't ready, it is possible to delay chemo slightly).
Sending love to everyone, as you face your challenges and also, hopefully, keep your eyes on whatever is your inspiration. 🌹❤️
Danie (on his ward round) and me, a few minutes ago:
Danie: So, did you already have a blood transfusion?
Me: Um ... no ... if I'd had one, it would have been you prescribing it. Why do you ask?
Danie: Because your count has jumped up to 9.6, as it would have after a transfusion. So it's done that, all by itself!
~~~
No
blood transfusion needed, after all!
I've been receiving all sorts of 'transfusions' from all of you, throughout this process: thank you!
They're still going to monitor my digestion (which is still unsettled) and energy levels (I'm tired, but who with Covid isn't?). The coughing is almost over, and my temperature is now constantly normal.
Likely discharge: still tomorrow, all going well!
Lots of love to all 🌹❤️
2023 07 25
Home!
Thrilled to be back with Gail, Neria and Layla. We're going to take it really gently, and we know that help will be at hand from various quarters if we need it (we don't think we will, but are grateful for the offers).
Love and appreciation to all 🌹❤️
2023 07 31
Hi all - just back from having a full blood count, to check whether I'm ready for tomorrow's chemo. (I was wondering, as I'm still tired post-Covid, as is Gail.) My counts were really good, so we're going ahead with Cycle 6 (final cycle!) tomorrow. 😊
I'll be saying 'bon voyage' to Julia before heading to the hospital, as she's flying home tomorrow. It's been wonderful having her here.
Lots of love 🌹❤️
