I share this because I have always been impressed by my mate's sheer, quiet courage in the face of adversity.
Dear Skip,
Your email is timely
insomuch as I wrote to the “kids” (adults, actually) yesterday giving them an
update on my multiple myeloma, the blood cancer that was first diagnosed in
mid-2017. Therefore, I can tell you what I told them – which was basically just
informing them where I am after yesterday’s meeting with my haematologist.
The original diagnosis
led to a bone marrow transplant in early 2018. It was successful but the
myeloma came back within a year – unusual because the transplant should see a
person right for a good few years. No worries, says my haematologist, the very
capable Specialists at the nearby hospital. “We’ll put you on
oral chemo tablets (Lenalidomide, which are derived from the thalidomide which
caused all those birth defects 50 years back)” which is where I have been since
2018. They worked well and got me back into remission within six months – again
an incredibly speedy outcome. No real problem side effects from the chemo so I
was happy to take them. (The pills, incidentally, cost around $6600 a box, or
$300+ a pill!) but only $6.60 from the hospital pharmacy thanks to the PBS.
Now, the latest blood
results indicate that the myeloma, which was in recession for many, many
months, has come back. The para-proteins, which are an indication of cancer,
started rising before Christmas from two to three to five and, this week, the
reading was 10. I do not
think it was related, but the chemo pills that I was taking were reduced from
15mg to 10 about six months back and I was allowed to take only three steroids
(dexamethasone) instead of five to try and cut the redness in my face which
would hit me for two days each week after taking them.
Whether that was
coincidental or not, does not matter as all these drugs eventually lose their
effectiveness.
So, my specialists are
looking at the options. There is a new generation to the Lenalidomide mentioned
above but it can cause heart problems – not that I have a bad heart.
But the oncologist is
looking to get me, instead, on the trial of Darzalex which has just been put on
the Pharmaceutical Benefits Scheme meaning that it can be bought by me for as
little as $6.60 when it would normally cost those with myeloma as much as $160,000
a year!
As I am about to go on
the third treatment (bone marrow transplant, then chemo and now ??) I am not
really eligible for the trial conducted at the hospital on this drug (available mainly
for those on second-stage treatment), but I am confident that my oncologist can
get me accepted for a trial period.
So, there is bad and
good news – the latter being a very modern treatment, probably better than what
I am on. I do not feel bad and only the blood results indicate any change. The Oncologist should know by the end of the week if I can take the new drug. Myeloma, you will read,
is treatable but not curable, but new and more effective treatments are being
devised monthly.
So there, my old workmate, is the medical situation.
I am not writing much at the moment as I have just done a
complicated family in a 100-page photo book (an example page is attached) and I
must now work for a book to commemorate my daughter’s 50th birthday
next month (not to mention our 55th wedding anniversary – where
did the time go!!?)
Once that is done, I might try and work a few memories. I found
some old cuttings which might help – even a Nation spread of journos vs pollies
football game which I will send if I can find again!
Our son hopes to get out of the Middle East this month but these
bloody state premiers are being messed around by the federal lot is not helping
Aussies return. Our son has a dog and, guess what, there is only one quarantine
station in Australia, in the dysfunctional state of Victoria. You would think
they would have established a pop-up quarantine facility elsewhere by now. Too
hard for the pollies. Which does not give me much faith in their vaccine
choice.
Hope we can get away in our caravan by the end of February. We do
feel safe in this isolated state, so different from my sister in the UK where,
as far as I can read, things are pretty grim. Throw in the US debacle of Trump
etc and it is not a good start to 2021.
Okay, that is much more than I intended to write, and a phone call
would have been the wiser quicker option. Trust all is well with you. Gerry L
is getting longer in the tooth but I am assuming that he is hanging in there.
Like you, I am still rather shocked that Azhar checked out when he did.
XYZ
Dear XYZ
I will pray that you come through this.
You have been through so much and it would seem
you have taken it in your stride, in
your own unflappable way.
For a little while today, Rufy seemed
to be leaning over my shoulder as I was reading
your email. Shivers ran through my
veins, remembering what we went through with her.
I know you will be away on a holiday
soon, somewhere quiet. I hope you will have
a beer or a glass of red.
If your ears are burning, it will be just
me sending you good vibes.
With my prayers,
Skip
Skip, you’ll remember back in mid-2017, the
registrar, who happened to be Indian, suggested I go home and sort out my
financial affairs when tests showed I had additional problems to myeloma. I did
not take him too seriously.
I should have been a paraplegic at 18, a write off in cars since then – and the fall off a cliff in Durban was just testing me! So, I did not worry then, nor do I worry now. I have a good haematologist and a loving family. Thanks for your good thoughts.
All the best
XYZ
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