Update: April 2023
Well, everything that
I thought I knew about cancer – and about myself – keeps getting turned on its
head ...
The biopsy results
show that I have high-level, rapidly advancing lymphoma, on top of – and
separately from – the original cancer I've been living with (which is as stable
as ever, and slow.) The lymphoma is non-Hodgkins, for info.
It's rare to get
this combination.
It's gone from
nothing (November scan) to spleen only (early February) to a major presence – and
growing (late March, two weeks ago).
If I do nothing, or
continue to treat it only naturally, I will be gone in a matter of months.
However, this
lymphoma can be treated, usually with good results (probably remission, Garth
tells me). The treatment is ... chemo. The thing I swore I'd never have. High-level,
intense, with all the usual chemo side effects, over 4 to 6 months.
At the same time,
the awfulness I'm experiencing now (fever, no energy, etc) will likely clear up
from the second treatment onwards. Ha ha – just in time for the side effects to
get going!
My internal debate
about what to do has been intense and difficult.
It helped
enormously when David Nye replied to my WhatsApp questions (very kindly writing
from his few days away) that he wouldn't have a natural treatment to offer for
a lymphoma and that he does consider it treatable as Garth is suggesting – and
that I could stop if I found it utterly unbearable – that was the last step in
the direction I'd been heading over the last few days.
I'm absolutely
terrified!
I have let Garth
know that I'm going ahead, and now he has to hand me over to a haematologist
for this part – he's thinking about which one would be the most open-minded
about my parallel natural treatments. (Don't worry – I won't do anything that
decreases the efficacy of the 'hard' stuff.)
Next step: meet the
haematologist put forward by Garth.
And just to be
clear: if the chemo works, I will still have the breast cancer, being managed all
the time, for the rest of my life. As was expected anyway, before all this
happened.
DM168 were very
kind about letting me resign immediately, last week, and thanking me for our 2½
years together.
I'll only be doing
small editing or data analysis assignments, here and there, over the next
while.
Thanks for all your
ongoing love and support.
Lots of love 🌹❤️
* * * * * * * * * *
* * * * *
13 April
Hi everyone –
What an
extraordinary week.
On further
prompting from me, Garth secured me a haematologist. And I'm so glad he did! I
had been feeling worse and worse, every day. (The main cause of the delay was
that many of the specialists had been on Easter vacation.)
I met Danie Kotze (the
haematologist) yesterday afternoon, and he was extremely helpful. He outlined
the tests I still need to do (bone marrow biopsy, echocardiogram, and analyse
the further results from the biopsy of two weeks ago). He also told me that
I'll have to learn more in advance about side effects than I want to, in order
to sign the consent form for chemo, which starts in a week's time.
Lastly, he sent me
to have further blood tests immediately, to fill some gaps that he considered
important.
Then home with Gail
to join the wonderful Jane (Gail’s sister) and Piers, who were staying with us
for just one night.
This morning, Danie
Kotze phoned to say he already had my blood test results, and I must please
report to the haematology ward this afternoon and be admitted for three nights,
so that they can urgently get my calcium and haemoglobin levels right, before
these do any serious damage. It will also help with the dizziness, weakness,
fever, lack of appetite and low muscle tone.
Well, that changed
this day, somewhat! And here I am, in bed in the hospital with the drip already
in, in its first phase.
I'm not yet up for
lots of visitors (I'm just trying to find myself again in what has been quite a
frightening time). I'll let you know if/when that changes.
Thank you so much
for the love, the good vibes, the follow-ups, the beautiful photos – they mean
an enormous amount to me!
Lots of love to all
of you 🌹❤️
(A baby dragon
accompanied us on the drive to the hospital)
(Later, my niece
Geraldine sent me this)
15 April
(Fireball lily, Kirstenbosch).
Hi All – thanks, as
always, for your love, photos, support and good vibes!
It has been
wonderful to have all this assistance and monitoring, and to be able to start
turning right-side-up, slowly but surely.
This has included
being poked and prodded; a multi-channel drip with everything you can think of
going in – including my two units of blood being driven in from the blood bank
during the first night (and the first being used immediately); frequent visits
to take yet more blood for monitoring levels of minerals in my blood; all the
other usual monitoring.
At the same time, the
two still-needed tests were done yesterday: my heart is good to take on
anything (yay!), and we have to wait until Monday for the results of the bone
marrow biopsy (which was OUCH!).
Thus far, my
calcium level is heading steadily down towards normal, my haemoglobin level is
now fine, a low level of potassium was found and is almost correct now
(including some oral doses of a liquid that has won my lifetime award for bad-
tasting medicine), and the six-week fever, which was related to all of this,
has come down to mostly normal levels. I'm no longer dizzy, and I think my head
is turned the right way round again.
Almost ready for
chemo! Which is what I need, and am learning even to want.
From Danie's ward
round, today (Saturday): he has decided to keep me here and keep working on the
calcium level, until we start chemo as early in the week as possible, in-house
(and then I go home).
I had an
interesting insight the other day: if I hadn't been on such a tightly
controlled programme to monitor my breast cancer, I would not have had the
urgent access I needed, to scans, consultations, further specialists, etc, and
I might not even have understood what was happening and responded so quickly.
The weirdest silver linings that one gets!
So much love to all
of you! 🌹❤️
17 April
Dear All
Well, your love and
support, and the assistance of the hospital and Danie, have managed to get me
back to looking like this. Thank you!!!
Gail took the photo
shortly before our chemo briefing with Danie: that did bring me a lot further
down to earth, as I heard about the programme for the next few months, the
potential side effects, and the huge risks if I catch an infection or similar.
All of this will
happen in constant three-week cycles: for me, Day 1 will always be on a Tuesday,
with the entire cycle's chemo being administered on that one day, but all sorts
of checks and milestones along the way until the next Day 1 rolls around,
exactly three weeks later. There will be blocks of time when I (and our home)
will be totally out of bounds for everyone except Gail and me, and other times
when I can see people, so please always check with me before planning anything
that involves me!
(Circle dancers:
there will be some rare occasions when I may even be there!)
Tomorrow is Day 1
of Cycle 1, right here in this hospital bed.
An auspicious day:
two birthdays and two anniversaries, all of special people.
Much love, always. 🌹❤️
18 April (evening)
Dear All
Thanks for all the
love, and for walking alongside me today.
Chemo started late,
and is only just finishing now.
It's been a sleepy
and good day. More sleeping starting now.
Good night, and
much love from me. 🌹❤️
19 April
Good morning,
everyone!
The night was a
good one after being pumped full of side effect prevention drugs, and I slept
well.
Woke to this view.
(And was then moved out of my “nest” into a 4-person room.)
I may go home
today; otherwise tomorrow.
Hope all is good
with all of you.
Lots of love 🌹❤️
HOME!!!
With a two-minute
detour on the way.
Thanks to everyone
who has been to the moon and back with me, during the past week: Gail, all of
you, and the wonderful people at the hospital.
🌹❤️
Dear All, on Day 5:
It's been worse
than I expected. (Silly me!) Once the effects of the drugs that buffer the side
effects (and elevate one's mood) wore off, OMW! I'm not going to go into
detail, as that feels counterproductive. Just to say: this is not for sissies!
Ironically, the anti-nausea drugs were so potent that it's the one thing that
didn't happen at all (thank goodness).
I've been in bed
the whole time since arriving home, and plan to continue hibernating throughout
this cold, wet weekend. Not up for visitors at all.
Gail is a total
star.
Also Layla.
Lots of love to all
of you 🌹❤️
23 April
As I lie here,
mostly more asleep than awake, dreaming of all the wonderful things I want to
experience and do again, I just want to say thank you, thank you, thank you for
all your messages and your love.
(It is still tough
today, but slowly, slowly easing a little.) 🌹❤️
Dear All, on Day 7:
This is the day
that one has to go to the Haematology unit for blood tests and a general check
whether one's balances are ok.
Mine were found to
be needing some attention again, so they admitted me right back to my very same
bed with a view. My huge appreciation to Danie Kotze for checking so
thoroughly, and the ward for being so welcoming to me. And there's great relief
in letting them monitor and care for me right now.
This is my strict
quarantine week, so NO VISITORS AT ALL.
Lots of love
to all of you 🌹❤️
What I didn’t mention,
in the latter update that I sent out via WhatsApp (as usual), was that I now also
had a deep vein thrombosis in my right calf. Apart from being painful and
dangerous, this was probably the main contributor to the high temperatures I
had continued to experience. Not only that; I had a very bad case of thrush in
my mouth, and as I’d never had it before, I had assumed incorrectly that this
was the mouth ulcers that had been mentioned as a possibility. On admission, I
was presented with four different gargles etc, each to be used several times a
day. The thrush cleared really quickly. How I wished I had phoned in to the
ward as soon as it started!
Hi All, still from
hospital!
(Not the greatest
photo, with the room light reflecting, but just to show the pink sunset.)
They continue to be
amazing here. I'm learning (by watching) about Danie's problem-solving
approach, and experiencing how it's implemented by the team. (One might ask,
"What about prevention rather than solving after the fact?" Yes,
there's lots of prevention too, but everyone responds uniquely to the treatment
– hence the unique problems.)
Last night I
received two units of blood – apparently people often need that, after chemo. I
also learned how closely one's mood is related to one's haemoglobin level – yesterday
had been a particularly difficult day for me.
They're still
getting the rest of the blood levels right and dealing with the related fever,
before I can go home.
Oh, and Garth the
mensch oncologist popped in to say hello to me this morning, which was lovely.
As always, my love
and appreciation to all of you, for your love and support 🌹❤️
29 April
Home!
As of this
afternoon.
(Photo: The view
from our front door.)
All the balancing
of blood counts and levels is now done, and I need to continue monitoring the
basics (temperature and weight) at home.
Some of the issues
caused by the chemo (especially digestive ones) follow me around, whether at
home or hospital!
Many of my usual
lifestyle choices, especially about food, cannot apply while I'm in this
process, as I learned when consulting the fantastic dietitian who is available
to all who are being treated with chemo etc at Constantiaberg. (Until the day
before treatment started, I had had no idea that I would have to be on an
anti-microbial regime for the next long while.)
My appreciation of
that whole team is unchanged – or, even, increased. Just wow.
And of Gail, for
all that she's doing for me, and all the parallel changes that she is having to
make about what we eat and how it's prepared.
And all of you, for
the ongoing love and check-ins and pics.
Lots of love 🌹❤️
No comments:
Post a Comment