The Restart

 Myeloma (a type of blood cancer that develops from plasma cells in the bone marrow)

vs. Jo 

Round 2

I am lucky. I have had five fun filled, busy and active years, free of cancer. Now myeloma is back. I’ve got slower, short of breath and more susceptible to any bug going round, but I’m still here. Others have not been so fortunate. 

I am trying to keep track of what happens to remind myself in future months when things get tough and to help others understand what it is like. My journey to this point has been eventful. 

My first treatment for myeloma was  in New Zealand; a stunningly beautiful country where we have lived for 7 years. I wrote a blog about this called: canibeatmyeloma.blogspot.com. It hasn't been beaten yet.

Since 2017 the treatment options in NZ have not moved with the times. 

We have relocated to Australia. A place where we lived happily (with 2 years in HK in between)  from 2006-2015.

I owe this decision to 3 things

1. My good friends Mark and Carolyn Ryan who alarmed by my recent demise, mined their social network for information and persuaded me to consult a leading Haematologist in Sydney: Professor Judith Trotman. (now responsible for my care). Dr Henry Chan from Wellness centre Auckland, validated everything Judith told us informally and added that we had to leave NZ immediately if I wanted to get better treatment.

2. The good humour, courage, wisdom, patience and advice of Fern and Helen who have been through it all. We lost Fern, a strong and brave soul to myeloma at the end of June. I still hear her chuckle in my head at the madness of it all.

3. My wonderful partner Sarah, who took a big gulp and together we made the decision to up sticks and move to Sydney. 

As an Australian citizen, I have access the Medicare system immediately on return to residence. Australia has 4 more myeloma treatment plans than NZ and access to all sort of clinical trials for myeloma. In NZ, all the new drugs are not yet approved or trialled or readily available. A no brainer.

After such a big decision, there comes the shock. We are lucky to have some brilliant generous and loving friends rallying round to help us as we attempt (in parallel) to:

• Lodge temporarily in the home of firstly Pete and Deb’s apartment in Milson Point then in Bev and Simon’s deluxe top floor in Mosman. I even have access to a kitchen where I can experiment with recipes. Latest: Neil Perry slow cooked beef with pine nuts and artichokes.

• Squeeze in a trip to Europe to see family and friends and search for sunshine on the Gold Coast before treatment started. Surfers Paradise from Burleigh Heads.

• Access Medicare and get into the hospital system for 4x 21 day cycles of Myeloma treatment.  (started on 18 July)

• Buy and furnish a 1 bed 70sqm apartment in Sydney with a baby kitchen. Maybe time for a thermomix?

I move in on 29 July; Sarah will follow – hopefully without wood work tools or a piano in her luggage

• Sell and pack up our Millbrook house by 12 August; Sarah is on the case now. Hopefully in between walking, snow shoeing, cycling, swimming, golfing, yoga etc.

• Find another main home to live in (location and country still under discussion which does not help the process much; we have time to worry about this in 6 months or so)

Just a bit stressful even though we are a couple used to living our life at speed. It is the ticking time bomb that drives us on.

Since starting on back on the heavy drugs, I’ve been jabbed and tested and drugged up with:

• 5th and 6th shot of Covid vaccinations; something called Evusheld 

• Twice daily Eliquis/Apixyaban blood thinners- am expected to take these for the rest of my life

• Side effect suppressant pills (Resprim and Valaciclavir)

• Regular blood tests and a canula in for weekly infusions

• Twice a week injections in the stomach of Velcade and once weekly of Daratumumab

• Dexamethasone (steroids) pills or infusion 4 times a week; I’m up at 4am bouncing around like tigger and have a permanent red flush. (at least I look healthy even when not)

• A CT scan for lesions in my bones (none yet)

• A CT scan with iodine for blood clots of my lungs (no clots either)

• A bone marrow biopsy – hellish slitty needle fortunately with optional laughing gas. That did not last long enough and hurt like hell after. I wanted to take the gas as a carry out. 

Hospital is on Mondays and sometimes Thursday too.

I expect to have four 21 day cycles of DVd (Daratumumab, Velcade, dexamethasone) This regimen is not given to cure multiple myeloma, but rather to slow the progression of the disease and to decrease symptoms. All being well, this should take me to the middle of October.

Next up in October will be an ASCT (autologous stem cell transplant) I had one already on 30 August 2017. The treatment uses healthy blood stem cells from your own body to replace diseased or damaged bone marrow. Last time, I was given stimulants to grow my own new stem cells and I made enough to save some for later (two for the price of one)

Whilst I laze about in a hospital ward on pinging machines for 12 weeks, the nurse practitioners in Sydney and NZ are working out how to get my 51 year old stem cells moved from deep freeze in Christchurch Blood unit safely to Sydney.  Possibility is infuse 51 year old me back in to a 57 year old body; grow some new ones or make a cocktail of both. Whatever option, I’m facing the high dose Melphalan, high risk of infection, possible intensive care and of course the subsequent hair loss. Sarah wore my blonde wig more than me last time.

It is all rather daunting.  Diet is unusual too. I have to be on a pregnancy diet. No shell fish, raw fish, processed meats, soft cheese. No rock melon, green tea, salad stuff and fruit only if I wash it myself. Wine does not taste great; nor does some gin (although I am going to keep trying it). I feel sick and have to eat very slowly to get it down. I also trying to drink 3 litres of liquid a day to flush out the nasty stuff.

Despite all of this, we will try to squeeze in as much fun as we can as the treatment progresses. The last week of the 21 day cycle is less onerous and there is no reason why we can’t push the boundaries of what is possible.  Maybe I can even do a whizzy trip back to Millbrook one last time before the house gets sold. 

We have found and made wonderful friends around the world and I thank everyone for sending so much love and best wishes. I am sorry that I don’t have to capacity to write to everyone individually, but hope that if I can write it all down just once in a while it will be enough to let you know that I am thinking of you all too

Much love

Jo

xxx