Taking Control of My Cancer Journey - Pt 1

When one is diagnosed with cancer, everyone starts talking about "the journey" that has begun.  We hear "my cancer journey" stories and are told about what to expect during our own journey.  I describe it that way too, even though it is a journey you never asked to embark on and is, in real terms, the disease equivalent of an extended trip to Baghdad.

At first, there are the tests. First time around, these are performed with a good spirit of optimism and hope. You are told about your personal prognosis and the chances of your cancer returning. That is fear number one. It eclipses everything for a very long time. Every ache, pain, twinge or niggle and the fear raises its ugly head. Once you have a cancer diagnosis, that fear will be with you forever. 

My initial Tour Guide for the journey, my Oncologist, the first time I had treatment was lovely.  She approached treatment in combination, of me as a person and the cancer as an entity.  It was a good approach, I felt that I had an input into the chemotherapy element of my treatment, with a review before each cycle, of how I had coped with the last one; what the sickness had been like, etc.

Following the commencement of my second 'journey', when I was diagnosed again in July 2011, I had a new Tour Guide/Oncologist.  She didn't know me at all and we had to start our relationship from scratch.  She was a lovely woman, who, as with most Oncologists and health practitioners had a large caseload of patients, all with different variations of this horrible disease.

We had some differences of opinion.  One of the very first things she said to me when I attended my first appointment with her was...

"I am approaching this on the basis that we will manage it for as long as possible."

Now, I may have been wrong, but that screamed out to me, "You are going to die from this!"

I immediately responded with, "No!  I am approaching this on the basis that I am going to beat it and it will go!"

That first sentence absolutely terrified me.  It made me believe that I had little or no chance of beating the cancer; that the cancer was going to win.  Who knows, it may eventually do so; I may get hit by a bus, but I do not walk around every day with that fear hanging over me either - even when I increase the risk of that happening by crossing the road without a little green man to guide me.

I was 39 when diagnosed for the second time.  My children were now 12, 9 and 7, I had every reason to fight, no reason to concede anything.  I needed to be seen, and treated, as that person; not just as 'breast cancer recurrence to chest wall with spread to supra/super-clavicle lymph nodes' - I needed that same combined approach.

I also understood more this time.  I knew I could have more of a say in my treatment and this time, I insisted on it.  Doctors generally do not have time to sit pouring over research papers for each individual case they are treating.  I did though.  So that is what I spent my spare time doing.  I read about recent advances in treatment for breast cancer, case studies of surgery for chest wall recurrences and I investigated what the possible options for me were.

This helped me feel much more in control and positive.  I would build myself up into a fearsome warrior and picture myself kicking cancer's ass.  I actually felt like I was putting on my armour and getting "battle-ready" every day. I also loved that my dear friend Claire Spencer (@thedancingflea) came up with the hashtag #FighterTChee on Twitter.

I would go to each appointment with my Oncologist, armed with information, papers and questions.  I asked about drugs, surgery and what else I could do that would help.  I cried. A lot. I was battle-ready but I was also absolutely petrified.  I hated.  I hated that cancer had come along again to wreck things, but I could not wallow in that hate.  I had to channel that negativity into something that would be more helpful; into the fighting spirit that would get me through each day at a time.  It was exhausting, but absolutely necessary.

Every day, I was reminded of why I had to fight, why I must survive.  I still am and I still fight, thankfully not as intensely as during chemo, but now, that battle will be one that I am always a part of.

...Next time, I will update on the amazing Mr Papagiannopoulos, (Mr Papas) who nurtured my fighting spirit and helped me incredibly.