A couple of blogs ago, Judith left a comment in which she encouraged me to 'keep sharing' - so, after a lengthy break - I'm back.
A lot has happened in the mind-numbing narrative of my condition and then there have been travels and trips of a modest mileage and other events.......but......
I guess, if you can face it, I should start by updating you all on the results of the MRI scan (21/05/2013). It confirmed serious 'wear and tear' but, more importantly, failed to show any 'hot spots' in the spinal column - the disease had not metastasised. Ipso facto, the back pain of which I had complained around Easter time was not the result of any spread of cancer.
So, this was good news and on the back of these results the oncology registrar had no objections to my request for a further reduction in the chemo dosage. I would be on just half of that on which I had begun the regimen nearly two years earlier.
Even better, with the help of a re-referral to Mark, 'my physiotherapist' at QEH, I began to develop an understanding of what had happened to me at the time of the acute back pain. I came to realise that the episode of over-exercising on the bike coincided with my self-initiated, weeks-earlier efforts to reduce the dosage of my other, neuropathic, medication. The exercising had triggered muscular inflammation or some such and I no longer had the levels of drugs in my body to control the neurological trauma. Result; excruciating, scary, crippling, prolonged pain. QED.
However, with the neuropathic drug dosage now restored to the original levels, I was able, tentatively, to return via 'Pilates-lite' to cardio-vascular working-out. I even got back on our abandoned exercise bike.
That's the good news.
.... but, about two weeks ago I had another CT scan - 'to set a baseline', as the oncologist said, for the newly-reduced chemo. Yesterday, I had the follow-up appointment and the result is - 'all-change'.
The scan revealed regrowth of the lymph nodes in my chest and modest growth of one of the nodes in my lungs. We are still talking 'small increases' but sufficient for him to conclude that the drug I am on may be losing its efficacy (but not as a result of the reduced dosage). The average length of patient-time on this drug is eleven months, I had been on it for nearly two years - my time was up.
Consequently, he was recommending a different drug, 'son of Sunitinib - Axitinib.' I know they sound like Sumerian or Persian princes but they are part of this new generation of oral chemotherapy and this new drug had only emerged from clinical trials and been passed by NICE in the early part of this year. He assured me that the trials demonstrated that the side effects were less severe than Sunitinib but the Googling I have undertaken today, reveals a very long list of 'probables', 'possibles' and 'unlikelys'.
I told him that we would 'go' with his recommendation - that 'I was in his hands'. He, a modest man, said that he was uncomfortable with taking that responsibility. The fact is; the responsibility is mine (I sign the consents next week), even if I have need to defer to his expertise.
This consultation was quickly followed by an invitation to join a pharmacology department pre-research discussion on the third floor of the Cancer Centre. Of course, we had already agreed to take part. We spent more than an hour in a small group of patients, partners and pharmacists in an exchange led by a university lecturer. The research focus, to be honest, appeared to be too narrow and perhaps, looking in the wrong place.
They wanted to learn what we, the patients and partners, wished to know that would help with the self-administration of our medication. There was one man present who was taking more than a dozen different drugs. He had gone home, after his first visit to the hospital pharmacy, with a carrier bag full of pills and potions. Living alone, he had developed his own spreadsheet to help make sense of it all. He struggled to contain his emotions as he spoke of the way some drugs had triggered deep depression.
For Diana and myself however, the question of what we wanted to know went wider than any narrow focus on drugs. What we wanted to know about appeared to be outside the knowledge boundaries of many of the specialists we have met; information about holistic approaches, alternative therapies that can help hand back a sense of control to the patient and family. We don't expect a beleaguered NHS to offer this as part of the 'normal service' - only that they keep an open mind and provide signposts (no doubt with the obligatory disclaimers).
The other thing with which they might assist, is bringing together people who are going through related experiences. I learned so much from listening to other patients, not least a sense of 'if you think you have a raw deal, think again'.
I guess this is the same kind of message Ralph McTell has been singing about for more than forty years.
