Things I’m glad I didn’t know,
and other stories
about my 2023
health journey
As the treatment side of this particular health journey
comes to an end, and I wait to see what effect the treatment has had, I have
been taking stock of the experience – this “time out of time”.
The things I’m glad I didn’t know might have made me
hesitate to undertake this process, as they’re not particularly enjoyable or
nice. At the same time, I had to undertake the process if I wanted any chance of
survival at all.
The things I’m sorry I didn’t know are those that
might have made the process smoother or easier, especially at the start.
The neutral things that I didn’t know are a couple of
discoveries I’ve made along the way, without attaching particularly positive or
negative meanings to them.
The things I knew, which are just as they are, are
not particularly fun or easy – but I was forewarned.
The things I dreaded, but which proved less bad than
expected, have been a source of great relief to me.
The things that proved to be “perks” have been
unexpected bonuses that have helped enormously to ease the process.
My useful learnings have also helped to ease the
process, as and when I have discovered them. They are the kind of learnings
that I would give as tips to other people who are in this process.
My blessings speak for themselves! My love and
appreciation to all concerned.
On reading all of this, a friend
who is a doctor was concerned about the things that I had not been told. She
said: “We medical people need to do better!”
In case others are also concerned,
this is what I explained to her:
Some of the things I hadn't
known were told to me in general terms, the afternoon before my first chemo
treatment. They appeared on the form that I had to sign (things like the
potential for mouth ulcers, nausea, etc) – enough information for signing the
form to constitute informed consent. Some of that was new to me, and some was
general knowledge (I am sure that everyone who has heard of chemo has also
heard that it can make one nauseous!). I had also chosen not to google “RCHOP”,
because I don't like creating self-fulfilling prophecies (in the same way that
I seldom read the inserts of medicines that list their side effects). I'm sure
Danie would have told me more details, if I hadn't told him this about myself!
Things I’m glad I didn’t know
1.
That there was the possibility of spending so
much time in hospital during the process! (In the four months since first being
admitted to hospital, I have spent a total of 34 days – just over a month – in
hospital. This includes day admissions for chemo.)
2.
How weird my nails would look.
3.
That there was a possibility that I would have a
deep vein thrombosis (DVT) and, if I had one (I did), that I’d have to take
blood thinning medication for many months.
4.
That I would have to stop taking St John’s Wort
while taking blood thinners.
5.
How much allopathic medicine (including
antibiotics) that I would have to take.
6.
How fond Danie is of mouthwashes!
7.
That I would have:
·
neuralgia (I get it in the soles of my feet),
·
occasional, hectic aches in my bones, including
backache, and
·
occasional cramps in my limbs.
8.
That I could get Covid while I was in this
process!
9.
That I might be confronted with other people’s
raw suffering while in hospital.
10.
That all my wee would have to be captured in a
bedpan, every time I was in hospital. (That’s how they roll, in the haematology
ward!)
11.
That my eyelashes, on falling out, would sometimes
land up in my eyes – this is really sore!
12. That I would not be allowed to have cut flowers
in the house, and would also not be allowed to do any gardening, for several
months (as protection against exposure to microbes).
Things I’m sorry I didn’t know
1.
That I had thrush in my mouth! (This was near
the start of Chemo Cycle 1, and I thought it was just the mouth ulcers that I
had been warned about.)
2.
I really should have contacted the hospital
sooner, in that first terrible week.
3.
I should have been watching out for constipation
from the start.
4.
That there was an in-house dietitian, and that I
could have consulted her from the start.
5.
That there’s a button on the drip machine that I
can press, to make the drip shut up when it starts to make all its noises! (I
only found this out in August.)
Neutral things that I didn’t know
1.
That I would sometimes have to take diuretics.
2.
That there’s an extraordinary process of analysing
a person’s blood to find out everything one needs to know, to decide the next
steps in the treatment plan.
3.
That a CT (computed tomography) scan looks at
the relative sizes of nodules etc, while a PET (positron emission tomography) scan
checks whether there is activity in the nodules by using a radioactive substance
to show up areas of one’s body where the cells are more active than normal.
Things I knew, which are just as they are
1.
That this process involves a lot of being
pricked by needles.
2.
That everyone experiences the process, and the
side effects, differently.
3.
That my sense of taste would be affected. (For
me, this wears off a few days after chemo – others aren’t so lucky.)
4.
That there would be times of great fatigue.
5.
That I would have to avoid people who have
infectious or contagious illnesses.
6.
That the process would be “time out of time”.
Things I dreaded, but which proved less bad than expected
1.
Losing my hair.
2.
Vomiting. (Thus far, I haven’t.)
3.
Nausea. (I have only had it mildly, and only
sometimes. Apparently some people on this particular treatment have nausea and
vomiting really badly.)
4.
Looking skeletal. (I don’t, even though I have lost
weight.)
Things that proved to be “perks”
1.
Eating foods that I absolutely loved as a child,
but have had to avoid in recent years. I’m now like a kid in a candy store.
2.
I have way more energy, much more often, than I
had ever dreamed possible for someone going through this process.
3.
I have made a new friend, most unexpectedly.
4.
Discovery Health’s oncology benefit and hospital
plan have been covering almost everything that I need.
Useful learnings
1.
What happens when, during outpatient hospital
visits. (I enjoyed making my flowchart.)
2.
One should always have a packed bag when going
to the hospital for an outpatient check.
3.
It is important to get to grips with the low microbial
diet, and also to prevent constipation, from early on.
4.
One can ask for other foods than those
listed on the next day’s hospital menu, including juice or dessert for a meal
where they aren’t mentioned.
5.
The existence of Fortisip.
6.
When one medical service provider requests a
service from another one (for instance a radiology unit requesting the analysis
of a tissue sample), they must put the patient’s doctor’s name in the
“referring doctor” space – not the name of the organisation that sent through
the sample – otherwise medical aid won’t pay.
Blessings
1.
The love and support of so many people – family,
friends, ex-colleagues, circle dancers, …
2.
The absolutely amazing care from everyone with
anything to do with the Haematology unit at Constantiaberg Mediclinic.
3.
Blood donors.
4.
All the care from Gail.
5.
My immediate family, including those who visit
me: Julia (from far away), Jonathan, Odette, Tevya, Nina and Marjorie, and Rosemary,
who is planning her visit.
6.
Renee, who has helped me to process the effect of
this journey on me, at so many levels (and perhaps also the effect of me on
this journey!).
7.
My own attitude, approach and experience of all
of this – some of which come from deep inside me, and some of which are the sum
total of the above.
