Skip to main content

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

 

 

 

Comments

Popular posts from this blog

MORE photos of cricketers in Kenya added

More cricket photos added! Asians v Europeans, v Tanganyika, v Uganda, v East Africa, Rhodesia, etc some names missing! Photo Gallery of Kenya Cricket 23 photos: CM Gracias, Blaise d'Cunha Johnny Lobo! Ramanbhai Patel, Mehboob Ali, Basharat Hassan and hundreds others.  

Pinto: Blood on Western and Kenyan hands

  BOOK REVIEW   Pinto: Blood on Western and Kenyan hands   Review by Cyprian Fernandes     Pio Gama Pinto, Kenya’s Unsung Martyr 1927-1965 Edited by Shiraz Durrani [Vita Books, Kenya, 2018, 392 pp.   Pbk, £30, ISBN 978-9966-1890-0-4; distributed worldwide by African Books Collective, www.africanbookscollective.com ]   Less than two years after independence from the British, on 24 February 1965, the Kenyan nationalist Pio Gama Pinto was gunned down in the driveway of his Nairobi home.   His young daughter watched helplessly in the back seat of the family car.   Pinto, a Member of Parliament at the time, was Kenya’s first political martyr.   One man was wrongly accused of his death, served several years in prison and was later released and compensated.   Since then no one has been charged with the murder.   Now the long-awaited book on Pio Gama Pinto is finally here, launched in Nairobi on 16 October 2018....

The sanctuaries trying to save birds of prey from extinction in Kenya

  The sanctuaries trying to save birds of prey from extinction in Kenya (Courtesy of Al Jazeera) Poison, deforestation and power lines have pushed the African raptor population to a 90 per cent decline in the last 40 years. Raptor technician John Kyalo Mwanzia rehabilitates a juvenile fish eagle to flight after it was treated for grounding injuries sustained in a territorial fight at the Lake Naivasha habitat, at Soysambu Raptor Centre. [Tony Karumba/AFP] Simon Thomsett tentatively removes a pink bandage from the wing of an injured bateleur, a short-tailed eagle from the African savannah, where birds of prey are increasingly at risk of extinction. “There is still a long way to go before healing,” Thomsett explains as he lifts up the bird’s dark feathers and examines the injury. “It was injured in the Maasai Mara national park, but we don’t know how,” says the 62-year-old vet who runs the Soysambu Raptor Centre in central Kenya. The 18-month-old eagle, with a dist...