Back to the old familiar routine

After a very successful overall experience with my first course of chemotherapy in that it prolonged my quality of life already past what many may have hoped. I managed to have such an amazing trip home and adventure to visit sox many of you lovely people for perhaps the last time and it was amazing, rewarding and appreciated. 

Returning home to New Zealand has been a bit of a whirlwind as the cancer has taken a foothold again which has caused me to spend some time in hospital as well as resulting in a night in a hospice for which I was neither physically nor emotionally prepared as it all seemed quite sudden to move to a place I certainly would have associated with death and dying more than health care. No doubt I am mistaken but this was nonetheless my perception at the time leaving me feeling somewhat thrown. 

I found myself experiencing quite lucid dreams that led to some confusion as to how capable I was at handling day to day activities. 

This may sound unusual, but after a stint in hospital where much of your thinking us done for you as regards day to day activities, having there suddenly be less focus on this can be jarring. Hence I was very happy to get home to house and family and normality due to the Herculean efforts of the hospice and community Nurse teams who through syringe drivers, which are changed at home daily have overall managed all my pain and allowed me to be safe and sound in my own home. It has also been good to get to independent activities we all take for granted such as driving, and knowing and believing yourself capable of these tasks as nothing rally has changed. 

There is so much support out there for people in my position so I cannot complain. Even from home I see at least one nurse every day if not several through the day all of whom work locally making everything easy for me in Newtown once more. 

So I am back to chemo. The hope is that I respond well to this regime and reclaim some further good times ahead. It is as yup in the air as it was before though we only hope my reaction to it is as positive as before and I have more time to life, love and enjoy life. 

Treading Water

Christ I'm looking forward to food. What began as a nagging discomfort in Dublin I originally - and quite wrongly, it seems - attributed to a sudden onslaught of "proximity to Grogan's following an extended period of Groganslessness" and developed into frequent but treatable pain throughout the rest of my trip and escalated on my return to unbearable pain and two extended stays in hospital has my here. 

Right now I have a 75microgram fentanyl patch on my skin and treat breakthrough pain with 60mg doses of oral morphine (severadol) around twice to five times a day to deal with the pain alone. I am about to head I for a combined ERCP (to view, clear and potentially replace the metal stent in my common bile duct) and EUS, which is a repeat of the previous EUS whose sole purpose is to treat pain by injecting alcohol into the nerves around my pancreas currently causing me all this pain. 

I'm also barely able to eat, reducing my intake to little and often that has become three tiny meals a day - resulting in some pretty severe weight loss, making me look somewhat gaunt - at least one of which I am throwing back up on a daily basis. I am also so low on energy that I have been bed ridden and fast asleep most of the last fortnight. 

It hit me this morning when I came into hospital and Zoe said "we've been surviving rather than living the last month or so, eh?". We sure have. I want so much for this procedure today to resolve this and let me get back to enjoying life again before I begin chemotherapy again inevitably in a few weeks. 

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.

The Words of Others on the Subject Cancer, Death, Love and Family

A friend put me on to the following article about the letters left by a dying father to his son:

When I'm Gone - Life Tips

It's Been a While

So, I am now mere days from my second-to-last cycle of my first (of a potential three) courses of chemotherapy. It has been an interesting last four months to say the least. The focus for the most part has been on coming to terms with what is happening, likely to happen and dealing with the ups, downs and side effects of chemotherapy while enjoying as much time as possible with my family and friends. The news that my scan showed no signs of secondaries on my lungs or liver (they are there, apparently, without question, but are not large enough to be detected by CT scan), which seemed a pleasant shock to my oncologist and that against all odds, my tumor (originally scanned at a mere 18mm) has reduced to a diameter of 16mm. This bodes well for a long break from chemotherapy - hopefully the full four months - before beginning a new regime on a new course of drugs, no doubt with new and familiar side effects to encounter.

The end of this first course has brought home the truth of my impending demise and albeit hopefully a couple of years away, it still seems far too close for comfort. I have found this time very emotional indeed. Not an occasional tear in the evening emotional but tears streaming uncontrollably down my face while driving the car or shopping at the supermarket emotional. I did wonder if depression was setting in, though thankfully it did pass after a couple of days but nonetheless, my initial diagnosis and thoughts of my actual dying (once again more from the point of view of its impact on my family) come to mind often.

Death is a surreal concept for anyone to grasp. At one time or another we have all pondered it. I am probably pondering it a lot more than most people without a serious illness or morbid disposition. I am not religious. I was born a Catholic but am now an atheist. I am not an avid atheist such as Richard Dawkins (though I have enjoyed some of his books very much), though I have come to the decision (and decision it is) - not lightly, mind you - that I believe there is no god, nor no afterlife. I do wonder that my diagnosis did not bring my (always) latent Catholic upbringing back to the fore. It still surprises me somewhat that it did not. My believe (as that is all we can ever have in such things) is still firm. Why am I discussing my religious belief? Well, because death and belief are somewhat intertwined. What do I believe happens after death? Well, I just don't know, obviously. No one does. Some small part of me hopes my firm belief is wrong and that somehow I will get to observe my family as they continue to grow, though deep down I think I have a stronger belief that nothing of me will remain apart from people's memories of me and what music and words I have recorded over the years.

Thankfully, besides all this, I am still in pretty good form. My family is as happy and close as ever and I am still very much aware of how lucky I am that I have a supportive and loving family and a wife in whom I can confide and with whom we can both discuss our doubts, fears, hopes and dreams. I am lucky that I have a supportive employer who understands and is concerned about my situation. I am lucky to have so many astounding friends both geographically near and far who are continuously showing their love and support.

Onwards and upwards. Tomorrow is another day.

Spring is in the Air

The days here are getting warmer and with it comes good news. The last cycle has been so good that it proves that chemotherapy (for now, at least) is not such a slippery slope. I have had an incredibly pleasant last cycle, where I mostly felt normal, with occasional vomiting of course, though this has just become expected background noise at this stage. I had my first CT scan since my initial diagnosis the day after my last chemotherapy session and heard back within hours from my oncologist that the news was good. This was something that absolutely no one - including, considering her reaction, my oncologist - expected. When we met she said she braced herself before reviewing the results and saw no indication of any secondary tumours in the lungs or liver and my primary tumour, which was initially measured at 18mm in diameter, had reduced to 16mm. No one, least of all us, had expected this. I had been so resigned to the news being bad that I had not even given the results a second thought. This means little except that the cancer had so far reacted very well to treatment and that we can cease the current chemotherapy course at the start of November and I will hopefully, depending on how the tumour progresses or spreads during the chemotherapy holiday, have a four month holiday from the hideous chemicals, side effects and fortnightly day long sessions in hospital.

Who knows yet what the future holds? I yet hold out hope, though everyone whom I come across who has known someone with this particular disease has also seen them die, and not believing in miracles my hope is coupled with the realistic idea that there is not long left. I am four months into my final two years, unless I hear otherwise. That said, the present is bright and happy.