PET (Positron Emission Tomography) scans are mainly used to detect tumours and metastasis. The patient receives an injection and the scan produces 3D images, highlighting areas where the resultant glucose is prevalent – such as cancer in cells. It seems to be pretty accurate, but is very expensive.
Mine is due on 5 October, almost three months after my treatment ended. This timing is normal, as 10-12 weeks are needed in order for the swelling and inflammation caused by radiotherapy to die down. Despite some protestations to the contrary by one or two health care workers, this scan is the key element in deciding whether my treatment has worked. They have had a look down my throat with a camera, felt my lymph nodes etc but none of this gives you a clue as whether all the cancerous cells have been zapped by the radiotherapy, in particular in the two lymph nodes where cancer was found in addition to the primary tumour in my tonsil. For that you need a good PET scan. In other words, this scan is the evidence as to whether or not the treatment has worked - whether you have been cured, or whether you will need more treatment. Unless it has spread beyond the neck area, in which case you are in deep trouble, an operation called a neck dissection whereby all lymph nodes in the neck area are removed is the minimum, usually with chemo thrown in again.
To put it very simply, whilst waiting for the scan you are in a situation of limbo: you don’t know whether you have been cured, you don’t know whether your treatment has worked. It is extremely, extremely difficult not to feel anxious in such a situation, which goes on for weeks or rather months. The mind inevitably addresses the various “what if?” scenarios. I actually felt that I had dealt with my illness and treatment pretty well till now. I felt I had done everything I could to understand and contribute to my survival and healing. But this last week I ran out of steam and started to feel things were getting the better of me. Some of this may be due to the fact that it is still a struggle to eat enough to stop weight loss. But I believe the largest element by far is the long psychological challenge of not letting thoughts about the scan dominate, coupled with the feeling of being abandoned by the health care system to deal with this entirely alone. This grinds you down.
The NHS applies the standard protocol to the cancer but leaves the patient to deal with the thoughts of the possible consequences alone, until the next appointment with the oncologist. For the first time, I feel angry at the way care is being – or rather is not being - administered. It is a system that treats the cancer, not the patient.
This week I attended the launch of a report called “Let’s talk cancer” by a little Welsh think tank called the Institute of Welsh Affairs. What was interesting about the report was that it crowd-sourced answers from patients on how they felt cancer care in Wales should be improved. http://www.iwa.org.uk/ The report said:
“What is striking about the final recommendations is that they are not new or groundbreaking, and certainly are not wildly expensive or unattainable. We anticipated that the discussion would reflect the political and media debate around cancer care and focus primarily on the availability of new drugs. Whilst this did arise it was at most a sub-theme and did not ultimately win enough popular support amongst ‘the crowd’ to be shortlisted. The ideas that resonated instead were related to improving the patient experience and communications with patients and their families.” (My emphasis.)
The report made six recommendations, the first two being that patients should be given information about delays to appointments on the day and should be able to access their notes. This is all about how you are treated and how much information you have about your illness. In other words, it is about empowerment, as indeed are the other recommendations. Patients feel disempowered.
When I look back over my treatment as a cancer patient so far, I have to say that if I had to sum up my emotional experience in one word, it would indeed be “disempowerment”. That it is the overwhelming feeling. This is certainly not the intention of the health care workers who have dealt with me, rather it is the outcome of a system that is in desperate need of profound reform. The focus is entirely on applying the standard protocols for particular cancers, rather than dealing with a human being. In consequence I feel isolated and utterly disempowered. It should not be like this and it isn’t good enough.
(The morning after this late night post I can say oh dear, oh dear, what an angry little rant. But I shall leave it online. A portion of feeling feeling sorry for myself perhaps, but even the morning after I still feel that disempowerment is at the heart of the NHS cancer experience.)
