Update: August 20252025 08 07
Hi everyone –
Thanks again for all the beautiful birthday
messages! I had a very quiet day at home with Gail, which was what I wanted.
The day before, I’d had a CT scan, and this
morning I saw Garth.
Today has been a blue-blanket kind of day,
with some grey along the way.
Blue:
The oral chemo did help to keep most of the
lung nodules from substantial growth, and also kept the pleural effusion at
bay.
I’m less depressed today than on grey-blanket
days, and I now have some answers to the uncertainty that has contributed to
the depression. But I’m also quite sad.
Grey:
There are several new nodules in my liver, and
the one that has been there all along (which had been considered simply a cyst)
has now doubled in size (15 to 31 mm) and is therefore deemed to be active.
(I looked for a section of my sky blanket that
has blue with some grey, and then realised that the other colours meant
something too.)
Row of Beige:
There is a metastasis on my left humerus (top
of my arm), for which we’ll do a short course of radiation in the next few
weeks.
White:
The incredible kindness of Garth, Sr Shelley
and the whole team.
When I started crying, taking in all the news,
Garth quietly came round his desk and just held me for a while. He then also
grabbed a tissue from the box, saying, “You’ve even brought a tear to my eye.”
What a mensch.
Garth assures me that I’m not yet in the “end
times”, and he’ll tell me if and when that happens. So, please don’t panic
about that.
We have agreed to change the treatment from
oral chemo to an injectable chemo. It’s a fairly gentle one and will hopefully
allow quality of life while doing more towards dealing with the nodes in my
liver, etc. There’s no hair loss or neuropathy (although I still have the
latter from 2023); nausea is unlikely and can be controlled anyway; but one’s
blood counts can be affected – if that happens to me, I’ll be thanking all the
lovely blood donors all over again.
On this treatment, gentle exercise is
encouraged. I’m praying that the treatment won’t be an energy drain, the way
the oral one was, but also acknowledging that much of my energy loss was to do
with what was happening in my body.
I’ll write about the way the three-week chemo
cycles work when I actually start the treatment. This will probably be in about
a week from now, to give the oral chemo time to work its way out of my system,
which is also the amount of time needed for medical aid authorisation of the
new treatment. What I can say, now, is that I’ll usually only have to visit the
chemo room twice per cycle.
Thank you, from the bottom of my heart, for
all your love and support.
I continue to wish all of you joy and
sparkles.
Lots of love 🌹❤️
2025 08 13
Hi everyone –
As always, thanks for all the love.
These past few days have been particularly
difficult for me. I feel like I’m two parallel beings at the moment.
The one ‘me’ is often able to function
normally; has no pain but rather low energy; has lovely conversations with
various people (my huge appreciation to family members who have visited and
people who have spoken on the phone); does her little bit of weekly editing work;
works towards finishing her book; has managed to prune some books this week,
and has had a very slow walk in Tokai Forest.
The other ‘me’, constantly coexisting with the
first ‘me’, is suffering from massive anxiety, grief, shock, insomnia, fear of
what life from now on could entail, and loss of what has been.
I’ve had several tearful meltdowns in the past
few days. And I’ve really appreciated it when the people who have been around
at the time have said they can’t believe it’s taken me so many years to do
that. Yet none of what has gone before has been an act. It’s been as real as
this is.
I spoke to Garth on the phone the other day:
when I told him how I was feeling, including that I was terrified I was about
to die right now, he said, "You absolutely aren’t." He prescribed
some sleeping pills – I’m going to try my first one in my life, tonight – and a
sedative for emergencies. (These feel so not-me!)
I also saw Renee (my wonderful analyst) on
Monday, and she was extremely helpful, as always.
This afternoon I received the notification
that medical aid has authorised the new chemo, which will be a drip on Day 1 (
for about four hours) and Day 8 ( for one hour) of every 21 days, for six
cycles. I don’t yet know when in the next few days it will all start.
Thanks to the people who have given me calming
exercises. They sometimes help, and sometimes don’t touch sides.
Thanks to Layla, who is the most extraordinary
nurse-cat.
And massive thanks to Gail, who keeps on
caring for me, day in and day out.
Lots of love 🌹❤️
2025 08 15
Hi everyone –
Thanks for all your love and kindness and
compassion. 🙏🏼
We were able to start my chemo today. It went
smoothly. It was my first time in this chemo room. There were six of us,
swopping anecdotes – some of them very entertaining. Nice to take my mind off
things. (The husband of one of the people made the most noise! He was the only
partner present.)
Today also brought sad news that I'd been
expecting for a while: my friend since school, Leigh, with whom I had been
mutually tracking cancer journeys since 2017, passed away early this morning. A
blessed release for her, but she leaves a big gap in many lives and I will miss
her. 🕯️
The two ‘me’s are still both very busy, and I’m
trying to get the second one to tone it down. It’s exhausting!
Some of you have asked how it’s going with the
sleeping pills: for now, I’ll simply say “the jury is still out”.
Layla continues to stay close to me most of
the time. Neria is her usual lovely, demanding self, and Gail is just
wonderful.
I love you all so much 🌹❤️
2025 08 21
Hi everyone –
My appreciation to all of you for your good
vibes, your messages of encouragement, and for taking calls from me when I need
to speak.
This week has been one of the most difficult I’ve
ever had.
It started well, after the chemo: on Saturday,
while I was feeling pepped up, I drove myself to circle dancing. I was there
for half the session, and I participated in two of the slower dances.
But by the end of Sunday, I had crashed. And
it’s been like that ever since. Anxiety, depression, exhaustion, mostly staying
in bed, sleeplessness ... the only relief I got was when I took the strong
sedative on Monday night, slept at last, and then slept it off most of Tuesday.
That is not sustainable!
Tomorrow, when I go for the Day 8 chemo drip,
we will see what other meds could help with all of this.
It feels so weird, being someone who has coped
until now, but I have to acknowledge my vulnerability and get help with this,
in parallel with the practical things I’m already trying to do (which sometimes
help and sometimes don’t).
Thanks again for all your love and support.
Lots of love 🌹❤️
2025 08 27
Hi everyone –
More and more appreciation from me to you for
all the love.
Last Friday, after chemo (which went well), I
did have a consultation with Garth’s Medical Officer, Carissa van Aarde, who
prescribed Urbanol to help me with anxiety and sleeping (we’ve stopped the
other sleeping pills).
Urbanol is now helping me sleep much better
and mostly feel less anxious. It also makes me less sharp-minded than usual,
and allows more sadness to seep in. This all still feels so very foreign to me!
And the chemo has more side effects than I expected. I have very little energy,
most of the time, and spend time in bed or on the divan on the patio. (Photo:
rainbow from a hanging crystal, on the divan cover’s fabric.)
I had been given to understand that my energy
might increase. I’m waiting ...
I have just stopped my mentoring and editing
work for DM168, which also makes me sad. But I should not be doing such work at
the moment!
Gail is being an absolute star, helping me
every step of the way.
Lots of love to all of you 🌹❤️
