Hello my healing team,
As always, I hope this update finds you well!!
The great feeling of being in remission has now settled in and I am now starting to look towards future management of my cancer and wider wellbeing. Since my last update, I have met with Nan (my Kinesiologist), Prof. Choong (orthopaedic surgeon and shoulder specialist) and Prof. Andrew Spencer (Myeloma guru). At this stage, my recovery is progressing well, and very much as expected. Physically, I am feeling good and have started going to the gym to re engage my deteriorated muscles, and have started walking so that I can reestablish some cardio form. Last week I thought I was feeling good and so I went for a run. I set off feeling like Rocky Balboa with grey track suit and red headband (only I wasn’t running up steps in Philadelphia) and I very soon realised how far my fitness had been set back. I was soon waking home feeling like Patty or Selma from the Simpsons (even looking the same shade of yellow).
Yesterday I met with Prof. Choong to assess my shoulder. It was Prof. Choong that first diagnosed my Myeloma, so it was really nice to go back and show him how well I’ve progressed. I was pleased that he shares my optimism and agrees that I can be here in 30 years time. He is please with my shoulder recovery and is suggesting that I may not need any surgery. As a precaution I will be having an MRI scan in the next few weeks to assess the current structure of the bone. It is likely that physio / rehab should have me playing bball in no time, although I think my game will be a little like Elmer Fudd’s from Space Jam.
It was really interesting to meet with Prof. Andrew Spencer to discuss my future myeloma treatment. Prof Andrew Spencer is on the scientific advisory board for the International Myeloma Working group. Effectively he is Australia’s Myeloma guru. He also oversees the Allogenic (Brother) stem cell transplant program at the Alfred Hospital. He has suggested that if I relapse, we will do an Auto SCT (to reduce the increasing cancer levels) followed by the Allo SCT (to introduce a new immune system into my body). What I find amazing is that I will inherit the strength of my brothers immune system, but I will also get his weaknesses. I already have verbal diarrhoea with a health splash of arrogance so……can’t catch what you already got!! It has also evolved that Prof. Spencer will be my treating doctor from now on as he will need to manage me through my Allo. Dr Ali doesn’t have the facilities to do the Allo. Although Dr Ali won’t get to read this, I would like to take the opportunity to thank him for his assistance! He has been awesome in supporting Sarah and I through the tough times and he answered all of my brothers difficult technical questions when they met him. He even had those nice Kleenex tissues with the infused Aloe Vero. It feels strange to be parting ways really. But we must progress.
My recent discussions and treatment with Nan have been really helpful and insightful. As I mentioned in my previous update, I now need to focus on implementing what is necessary to keep me in remission for a long time. The challenge has been me not quite knowing exactly what is required to stay in remission. There is so much uncertainty with it all and there is no single proven approach. What is clear is that I must take a look at all aspects of my life and continue to improve myself in all areas. For me, I think positivity and mental well being are key. These will be enhanced by living ‘deliberately’. By that I mean I need to seek out the things I want to do, the things that inspire me, and be active in pursuing them. The challenge is…….what do I really want to do??
I spent a lot of time pondering the question “what do I want to do”. I think the answer to this question lies in the simple fact that I need to ‘trust my instincts’! For all of us, opportunities continually present themselves, however, in the past, I had my head down and failed to recognise or act on them. I effectively had my blinkers on. THIS HAS TO CHANGE!
An example of me trusting my instincts, since being diagnosed, I have had to make a lot of decisions about my treatment, maintaining my wellbeing, and how I interact and communicate with everyone around me. When I was first diagnosed, an opportunity came to see my Kinesiologist Nan. At first I was apprehensive as I had no idea what Kinesiology was. But I went along anyway. It felt like the right thing to do. As it has evolved, Nan has been a huge help to me. She helps me address and respond to the issues that are challenging me the most. She has also helped me open my mind to the opportunities that are out there for me. From the first day I met her, she strongly encouraged me to write and to communicate my story. This has materialised through my updates, a tool which has been very rewarding for me. Tomorrow, communicating my story will go to the next level, as I will be on the radio with Nan talking about my journey. Between 3 and 4pm tomorrow (Wednesday 22 October) I will be on 88.3 Southern FM, Mentone to talk about the path I have walked. Please tune in.
With all that I have been through in the past 6-8 months, I know that I don’t want my family or I to have to go through that again anytime soon. So my focus has to be on what I need to do to stay in remission and I think my primary need is to live more deliberately. I feel that I cannot afford to go back to the old normal. I now need to create a new normal. When I look back to 2013 (and prior) I think that my life was quite uni dimensional. I was happy with the predictability of my life then. I roughly knew what was going to happen each day, each week. Now I look forward to not knowing what I am going to be doing, rather knowing that what I need to do will present itself as an opportunity, an opportunity that I will be waiting and looking for.
Love and hugs to you all.
Take care,
Geoff
