The beginning

Can I beat Myeloma (a blood cancer) ?

This is me just after a CT scan, Enjoying one of Clyde Post office cafe famous date scones.


I am 51. I currently live in Queenstown New Zealand but have lived in many countries in the world – most recently Italy and HK. I am an Australian and British citizen. I have wonderful friends in many different countries. I am very lucky in this respect.

Tomorrow I start a course of Chemotherapy for Myeloma. The entire treatment will last 12-14 months, mapped out with regular pill taking, injections, blood checks, consultant and nurse appointments, hospitalisation and lots of rest.

I have lived my life so far trying to stay fit, keep healthy, eat the most nourishing food, not drink too much, avoid other drugs, stay calm with yoga, deep breathing and relaxation to minimise stress; I take multi vitamins and minerals as an insurance policy vs my diet. And what good has all this done for me? It has got me to this point in my life, a body battling to stay alive and to fight cancer.

I thought I had a chest infection that would not go away. I had a bad cough after a flu like cold and phlegm on my chest in early December; it would not shift. I tried lots of cough medicine and gradually it eased. I upped my exercise after the Xmas/NY holidays and having friends to stay and tried to get myself to a better level of fitness. I hiked up a mountain, cycled 60km and played golf but I did not enjoy it very much as I struggled to get my breath. When I ran up and down stairs and felt like my heart would burst through my rib cage, I finally decided to go to the medical centre. An Xray and blood test results sent me straight to A&E for an overnight stay. After a CT scan, I was diagnosed with pulmonary embolism (described by various doctors as: “significant” “big” “extensive”) blood clots on my lungs; the suspected cause was long haul flights.
A course of 6 months of blood thinners (Pradaxa/Dabigatran) and optional pain killers (Ibroprofen, Codeine, Paracetamol) were prescribed.

A diligent doctor thought the cause was a bit strange (the last flight I had taken had been 6 weeks before) and took yet more blood tests. My GP thought I had an iron deficiency anaemia and possible MGUS (low level of paraprotein in my blood) but also referred me to a consultant. 4 weeks later, after regular checks (smear test mammogram, bone marrow biopsy, more blood tests) I saw a consultant haematologist in Dunedin and was diagnosed with myeloma.

My body has a 40-50% level of white cells in my blood that are bad. My paraprotein levels are at 32 (early stage 2) Good news is that heart, liver kidneys are all fine. Lungs are struggling despite the blood thinners and I have a tight feeling across my chest most days.
I try to walk 10,000 steps a day now but it is hard to do on days when I feel bad. Queenstown is a beautiful place and the views from the hill just spectacular. It makes the heart feel good despite everything.


I wonder why I have this cancer. There is no known cause.
It has all been described by the haematologist consultant (specialist doctor) as bad luck. I wonder when luck became a medical term. Described by others as “shit happens” or “NOOOOOOOOO”; probably more appropriate.
 I never expected cancer to happen to me; but it has. I am angry; I am sad; I feel sorry for Sarah my partner who has to live with me throughout this ordeal but most of all I am frustrated. Instead of planning theatre, opera, golf, bicycle trips or hikes and travelling to Europe for the European summer, I am planning from day to day now. Anything else is too uncertain as to how I will be and what stage I will be at.

Tomorrow, on 30 March 2017, I have to take 30 pills (26 in the morning) followed by a trip to Dustan hospital for my first chemo injection and then 4 pills in the evening. This routine will continue for 16 weeks until the first lot of chemo is over and if I am still strong enough, I move to the next bit of treatment.

I am anxious.
Will I be able to taste any food?
What can I drink that does not taste like vinegar (I love wine and wine tasting)?
How sick and tired and moody am I going to get?
Will we both be able to cope with this mentally/emotionally/physically?
How on earth will I be able to swallow all those pills without gagging them up again?
Will we ever be able to do all those sporty and cultural things we did before together?
Will I survive?

We all know we are going to die eventually. We never know when. At least I have a pretty good idea of what I will die from. 1 out of 2 ain’t bad. 

Comments

  1. Unknown29 March 2017 at 02:13

    ... For the 27 years I have known you Jo, you have ALWAYS been a fighter. Competitive, compassionate, supportive, fun loving, fit, adventurous and with a brilliant mind. You have never let anything beat you and in your 51 years to date it would be quicker to list what you haven't achieved, rather than what you have :-)!

    We know you will approach this 'Life Curve ball' in exactly the same way as you have everything else. You are the person who looks for the one reason something will work, rather than the 50 reasons it won't.

    You have encouraged and inspired SO MANY who have been fortunate enough to know you, work alongside you, engage in charity related sporting events with you, travel the Globe with you, play golf with you (although as I recall ... you used to win EVERY Ladies Competition at Royal Blackheath!!!) and we all so love you, for who you are and for the better person you have enabled us each to be - simply for knowing you and following your example ... caring leadership and considerate personnel management seems to come naturally to you.

    We may not be with you in person but we are definitely on this journey with you. Jo, you are NEVER alone in your thoughts, even in the quietest moments of the early hours of the morning - there are many people, around the world, who will be 'with you' in their thoughts at different times of the day and night. We hope you feel all our love and support and take some strength from this as you begin the fight against this little 'c'.

    Step by Step - Whitney Houston

    Lots of Love, Strong Positive thoughts, and HUGE Hugs are heading your way via cyberspace
    Sharon & Debbie
    XXXXXXXXXXXX




    ReplyDelete
  2. John30 March 2017 at 02:26

    Kick it's ass Jo, literally cell by cell. All of your natural skills, your determination, your courage, your sheer persistence are part of your make up, add that to the amazing emotional support from Sarah and a world of friends makes you stronger than this curve ball. Much love to you both. X

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