CanSpeak Australia (South Australia)
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While surviving cancer is the best possible outcome from a cancer diagnosis, survival often comes with some issues associated with recovering and staying well, in both a physical and a psychological sense. As the science of cancer treatment continues to improve, more of us who are diagnosed will survive the disease and survivorship care will grow as a part of the spectrum of cancer care.
While there are many ‘survivorship programs’ forming, we cancer survivors are not necessarily a ‘one size fits all’ group of people. Taking matters into our own hands may be our best option to get what we truly need from both these programs and the medical community at large. This article briefly discusses my cancer journey and how I participated in my own care.
As I sit writing this article on cancer survivorship, it is Bastille Day 2014 and the 10th anniversary of my cancer diagnosis day. Ten years ago today everything changed forever.
My diagnosis was given to me by a doctor in accident and emergency at a large public hospital, after a routine blood test which my GP escalated to an emergency admission and some late night x-rays. Accident and emergency doctors understandably deal with a lot of trauma, so I might have expected the delivery of the cancer diagnosis to be blunt, and it was. I discharged myself about 30 minutes after this diagnosis. The next day I returned for CT scans and oncologist visits as I started my journey through the confusion of a large hospital with a potentially fatal disease. At about this time I made the first of many decisions – I changed oncologists.
The next two weeks were an intense time of knowledge seeking – PET scans, CT scans, biopsies, heart efficiency testing, bone marrow sampling, blood tests and so many appointments where I always took detailed notes and asked many questions, even if we went over time. Privately, I sought organic food and dietary supplements (always with my oncologist’s permission, as I was cautious about contra-indications) as again I tried to do whatever I reasonably could to contribute to my own well-being.
Chemotherapy was a very nervous time (after all, we’ve all heard the horror stories), but I worried unnecessarily upon reflection. Of course I was ill, my hair fell out and my blood count went low, but it was as expected and the anti-nausea drugs were very effective.
After three courses of chemotherapy came the stem cell apheresis. I was fortunate to have healthy bone marrow which made self-donation an option. I had an excellent harvest that saw my stem cell quota collected in one sitting. These stem cells remain cryogenically stored to this day, should the disease ever return and I need a myeloablative ‘re-boot’.
Radiotherapy was next, preceded by the ‘fitment’ process, which gave me my first ever tattoos. I wish I had chosen a red ink (not black) from a cosmetic perspective. That machine did its buzzing thing above my body each day, where the short-term side-effects were so minimal that I queried if the machine was working. However, the late effects still remind me every day that it was. I arranged with the radiotherapists to count me in so that I could exhale continuously during the irradiation and avoid the dreadful ozone taste.
But just as my chemotherapy had ended, so did my radiotherapy and I was back into chemotherapy round two soon enough.
I recall the meeting where I was told I was in remission and the relief those words brought. Others still tell me I should be happy, but there was no happiness. There was only relief.
So what now? I was officially a cancer survivor, but totally ignorant as to what to do, what was to come and where to seek help. I took my health and well being into my own hands. I met with a physiotherapist to make an appropriate cardiovascular exercise program. I met with my local Cancer Council CEO who was generous with me and gently directed me to a consumer advocacy group. It always struck me as odd that I would be characterised as a ‘cancer consumer’ when I had always thought of consumption being a discretionary activity. No one understands me as well as other cancer ‘consumers’, so I found great comraderie and understanding in the company of other survivors. I watched Lance Armstrong while he spoke of ‘the obligation of the cure’ and cancer advocacy was how many of us sought to fulfil that obligation.
The first few years of my survivorship were about the physical rehabilitation and positive action around the ‘obligation of the cure’. But the psychological issues of a near death experience begin to find a place in my thoughts as the physical issues abate. I have compared my state of mind with that of the post-traumatic stress disorder affect. It is similar, but not quite the same. Suffice to say, facing one’s own ‘use by date’ is confronting and there is not always appropriate help available in the community.
To find a psychologist who understands cancer survivorship was a challenge. Many mental health professionals will listen and comment with a “yes, I can imagine how that feels”, but only other cancer patients can genuinely say “yes, I know how that feels”. Fortunately, I found a psychologist in the paediatric space who was able to advance my self-understanding.
But my core issues remain to this day, principal among them the lack of meaning and value from traditional work. While I was once the ambitious career-focused employee, I now realise that provided you have enough for yourself and your loved ones, the rest is mostly unnecessary. Holding down employment has proven to be difficult from within a body that readily fatigues and is not always trustworthy, and a mind that frames every issue at work against your life and death journey – that ominous presence in your recent past. This issue is still unresolved after 10 years and I’m not sure how, or even if, it will resolve.
I try to frame these issues more as challenges to overcome, and while surviving cancer remains my preferred alternative, the issues faced are still pervasive. As I have heard from many cancer survivors, a cancer diagnosis “is not always a death sentence, but is always a life sentence”. Those words are salient and should help all of us understand that we cancer survivors carry the fear (and wisdom) of facing death with us every single day for the rest of our lives. Our templates for life can be significantly changed and these changes can take time to understand and assimilate.
It is my hope that one day, every major oncology centre will have a cancer survivor on staff as a cancer ‘coach’ to support ‘cancer consumers’ and to help navigate the many and diverse issues that come from this journey as and when they arise.
I found it beneficial to be my own advocate and my own case manager as I navigated both the treatment and the survivorship space. By self-managing where possible, and then seeking good quality professional help when your need exceeds your own capabilities, it is possible to rebuild your new normal in a positive and useful way.
As I wrote earlier, one size doesn’t necessarily fit all, but I think it is possible to find your own fit of what you need with what is available. But if you disagree, then please join in to contribute to the ‘obligation of the cure’.