The Good, the Bad and the Uncertain

I am now almost three weeks from my last dose of Folforinox. This is the longest break from chemo I have had since early July when I began treatment. It is hard to believe I have finally completed my first course and come out the other side. I am finally enjoying life nausea free and it is so liberating. I learned that nausea comes in many and various forms, one of the worst of which is anticipatory nausea. I began feeling ferociously nauseous on arrival at hospital for chemo. Certain smells and even talking or thinking about chemo would bring on sudden, powerful nausea. Someone asked what chemotherapy was like and before I could answer I became awash with nausea. Enough about the bad, though. 

I had another CT scan - my third to date - and the results were resoundingly positive. On my initial scan at the end of June my primary tumour was 18mm in diameter. In September, it had shrunk to 16mm. On my third scan from early November it was no longer detectable. It is not known whether it has disappeared entirely as this is highly unlikely, though the scan was inconclusive in that if it was being used to diagnose cancer there would be insufficient evidence for diagnosis. This is surprisingly positive news. Oddly, having become accustomed to my "new normal" and the knowledge of impending death, this news has made me uneasy. There was a surety about my demise into whose works a spaniel has been thrown by this most recent scan. Now there are many questions without answers. Does this mean there is a higher chance I will survive longer? Is this a sign that I could be cured? Am I potentially one of the 4% who may survive this cancer? Does this change anything? I have to temper all additional hope with caution. It may mean nothing. No one knows how fast my cancer will spread once away from treatment. If treatment is working so well why stop? Well, I know the answer to this: my body cannot take it. Treatment has had a huge effect on my bone marrow. It has depleted it greatly. My body could take no more at present. 

The best news is that I no longer require treatment at present and heck, I definitely desire a break from it and its myriad unpleasant effects. I still have no discernible direct effects from the disease beyond the requirement for enzyme supplements to control eating related flatulence. I feel and look great. I have sustained my new weight at around 85-87kg rather than 110-115kg. I have kept my hair, though it and my beard have thinned and changed texture. Looking well when I look in the mirror helps me feel well also. 

I have been given the all clear to take a long holiday, which I begin Monday. I do not even have another appointment scheduled until February. 

In planning my trip and connecting and reconnecting with relatives close and distant I have come into contact with another cousin who is also suffering from the same disease and has a young family. Thankfully, he appears to be responding well to the same treatment as myself. It is both encouraging and sad for me that someone is suffering the same symptoms and doubts as me. Though I now have someone else with whom I can talk who understands exactly what I am going through (not that I don't have other close friends who have had cancer). Also, for the first time I have made contact with someone with the same disease for whom there is a present. Everyone else whose story I have come directly in contact with who had the same diagnosis had already passed away. This also brings me immense hope. 

The future is bright and for me as unknown as it is for us all. I take comfort in this. 

Staying the Course

So, here I sit on the edge of a new era, staring (as all of us do) into an unknown future full of the same fears (and some new ones for god measure) and wonder that we all do as I imagine my future. To be honest, the future brings mostly sadness and a reluctance to plan so for the majority of the time I keep my focus firmly on the now as that is essentially how we all experience the world and experiencing the world this way, I am mostly happy. It is still an almost daily occurrence that I allow the sadness, fear and helplessness in and allow it to take hold of me for a short time, acknowledge my worst fears, deal with them with whatever emotion deems necessary at the time, close the jar, place it back on the shelf and then continue on with life. I am still happy most of the time, as most of the time I remain present and a currently, on the whole, in a very happy place with a loving, supportive immediate and wider family, group of friends both locally and further afield and on an almost daily basis I am bowled over by the majority, kindness and thoughtfulness of others whom I know well or barely know.

No longer having to work, I have turned my focus on to creating and capturing memories with my family, writing letters and notes to my son and wife, recording myself reading novels to my son that I may not be around to share with him when he is ready, trying desperately to compose music that helps me document how I am feeling for myself and others. Music has always been a huge part of and love in my life. I have always adored listening to and appreciating it in its many forms - often surprising myself how I can change my mind about a certain piece, song, band or genre due to the slowly growing love for it - I have always enjoyed playing it, and most of all performing it. I do not necessarily enjoy the narcisistic element of enjoying people cheering for my music, I just perform very differently under the pressure and gaze of an audience that gives me serious rush and pushes me into places and forces me to forgive myself (for I am ever the perfectionist) for mistakes which tend to enhance rather than detract from the performance and resulting musical experience for the audience.

Having explained recently my difficulty with composition - something I have always battled with - to a new friend, she has given me the loan of her compact travelling guitar to allow me to play, compose and perform while on a long holiday away from my instruments and comfort zone. She also purchased me a journal for the purposes of aiding me with composition and lyric writing. It is this generosity that overwhelms me at times. I hope I have been as generous throughout my life and have brought similar joy to others whether I knew it or not.

Back to the precipice / sea shore / mountain vista on which I now stand. I am about to receive my final dose of chemotherapy for this first course. It is the hope that I will now enjoy a chemotherapy holiday of at least four months if I am very lucky. It will need to be at least three months as I will be away on the holiday of a lifetime they suggested I take at this juncture. I am both elated and nervous. No longer having to deal directly with chemotherapy and its symptoms, I now have to deal with the harsh reality of having untreated cancer and the unknown of how this will affect me and how my body will handle it.

To date, besides my initial illness, which led to eventual diagnosis, I have had no symptoms bar the chronic flatulence that I can attribute directly to cancer rather than chemotherapy. This has lulled me into a false sense of security somewhat. I am nervous that once I step away from treatment that I will now begin to feel the effects of the disease which started this off. I will need to wait and see.

For now, I hope, that after the next few days I can slowly look forward to a temporary end to the constant, clawing nausea, cold neuropathy and allow my body to slowly recover its platelets via my recovering bone marrow.

This will likely be my last update prior to beginning my next course of treatment as this is the focus of this blog. I am due a final scan to monitor my tumor next week, I may check back in with those results. Otherwise, time to draw an end under 2015 and look forward to 2016 and what it may bring.