I have not blogged here for 6 weeks or so, the longest silence since I started my on-line scribblings. Mostly, it is because I have not known what to say for myself since I learned that the treatment appeared to have worked. I suppose that, since then, I have been experiencing a mixture of dumbfoundedness, huge relief, worries about recurrence and a sort of post-traumatic numbness. A bit like a rabbit who was caught in the headlights but was lucky enough to have the car pass over him, bowling him over but not flattening him. Leaving him to scuttle into the long grass and hide.
Whilst my throat still hurts during and after eating, and I am still 10 kilos down on my pre-cancer weight, I do seem to be getting slowly stronger. I have even returned to jogging, very slowly and gently and not for too long. I have the sensation that I am getting better. I feel, within me, a re-ordering of the priorities in life taking place, but there are no conclusions yet. I regard this as a process taking place largely in the unconscious: it will come out when it's ready. The radio and chemotherapy will have caused long-term damage, but it is not yet clear whether this is just minor stuff. Hopefully so, and no reason to believe otherwise right now.
It is still early days for me and, at this stage, I suppose one of the major challenges is trust, by which I mean mostly being able to trust your body. Like so many, my cancer diagnosis came totally out of the blue, like a sniper's bullet. I was feeling physically fine when it came, and life was looking pretty good. Then of course came the diagnosis, the feeling of the ground having been taken from under my feet and the struggle to understand how this could happen to me etc etc. (I have my theory, and that's a helpful thing to have I believe, but far too long, complex, self-obsessed and utterly unscientific for a blog!)
Perhaps a clear and simple little example of how cancer takes the ground from under your feet is holiday planning. Last year, fulfilling a long-standing promise to the children, we were finally in a position to book the long-dreamed of road trip holiday in the USA. Then it all had to be cancelled. The kids were great, taking the disappointment in their stride and supporting me instead. Even the insurance coughed up without a quibble. Of course, we promised the kids we would go this year instead, it was just a postponement. During treatment, I didn't think about this too much. Obviously. I was focussing on survival. But now the time has come to start booking that holiday for next summer. It is producing a strange feeling of insecurity. When I booked it last year, it never crossed my mind that I would be too ill to go. I had been pretty healthy all my life. But then something evil, nasty, surreptitious and lethal surfaced in my body, seemingly out of nowhere. Cells in my body started to replicate in a faulty way, and rapidly, sneaking past the immune system that is supposed to catch that sort of dodgy behaviour early on. Meaning that the body I had taken for granted for nearly 54 years could suddenly no longer be trusted. So now, when I sit in front of the computer with the cursor hovering over the purchase icon for the flights, I hesitate. Can I trust my body not to do this to me again? I am only just out of treatment, does it make sense to make any long-term plans at all?
And here comes in once again the good old NHS, with its complete and utter failure to treat the patient as a whole, with its systems and protocols focussed entirely upon the illness identified and its old-fashioned Western approach to medicine. When I was diagnosed, I put in considerable effort (nay, huge effort) and some financial resources in tracking down consultants I felt I could trust. I moved hospitals also, to this end. I found an oncologist whom I trusted and liked, who came recommended and who was engaged in research about my kind of cancer. I found an ENT consultant who was equally engaged, even more senior and was even kind enough to send me scientific literature about my disease, in order to meet my obvious desire to understand it better. Trust isn't easy when you have cancer, but it is absolutely vital if you are to have faith that you will be healed or at least that you will have good and appropriate treatment. I had that, once I had sorted out in my mind what disease I had and what treatment was best. I really trusted these two persons.
Which is why I was so pleased when I was told that I would be followed up by the same ENT consultant. It is very common for patients to feel highly anxious before check-ups. After all, recurrence of cancer is not uncommon. Yet I did not feel this anxiety at all before my first checkup a couple of weeks ago. I felt I would be seen by somebody I trusted. Moreover,I had returned to work and was simply feeling good. I felt that I was in the process of returning to the land of the living - literally. But this was unexpectedly and within the space of minutes destroyed when I went to the check up and found myself confronted with a complete stranger, not my consultant. Not that there was anything wrong with the doctor who checked me out, no criticism of him at all (he was less senior, but because he was younger, no doubt). But he knew nothing of my case or background or history and had never seen my throat before. The letter of appointment did not have his name on it. Above all, I had not built up a relationship of trust with him.
I have since learned that this seems to be perfectly normal in the NHS: you can never be quite sure whom you will see at a follow-up appointment. For me, having been under the Belgian health care system for 18 years, it was even more of a shock. In Belgium, you always see the same consultant. Always. That consultant follows you, or your child, right through their illness unless there is a very good reason for it, like a medical emergency. The NHS approach would be fine if all doctors were the same, if all patients' notes were perfect and complete and the doctors read them in their entirety before an appointment with a new patient, if a given disease were exactly the same in all patients and if all the prior information exchanged between a consultant and a patient, beyond what is in the notes, were of no importance. Plainly, none of these "ifs" are true and that is why the NHS approach is so weak and so destructive of trust. It disempowers the patient and makes them feel helpless: you never know whom you are going to meet and there is nothing you can do about it. Unless you are willing to make a fuss, which is what I am going to do (or of course, if you can, you pay to see your preferred consultant. "Free at the point of use" should not mean "take it and like it if you can't afford anything else", but in this case, it does.) So, what should have been a reassuring experience turned out to be a thoroughly unsettling one.
I shall be booking my holiday in the USA, and I shall be learning to trust my body and other entities that play a role in my life again. But for cancer patients, this re-learning of trust, which is essential for healing and well-being, would be far easier if they were respected as people by the health care system. Cancer patients should be followed up by the doctors who have been treating them and not on an arbitrary basis by complete strangers.
