Wednesday, January 13, 2021

Your prayers for one of my best mates

 

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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