It all began on the weekend of the Diamond Jubilee. I had noticed flashing lights and floaters in my eye for a couple of days, but by the Monday I decided I could not ignore it any more, especially as my mother had had a torn retina and nearly lost her sight. I contacted NHS direct and was advised to go to A & E.
My symptoms were classified as non-urgent but I was referred to the eye clinic for the following Wednesday. Here I was told that it was a migraine and to go away and it would get better. Having suffered migraines in the past I knew that wasn’t right but felt unable to challenge the diagnosis. Seven weeks later I saw an optician, by which time I had lost most of the sight in my eye, and was told to go back to the eye clinic. After four months of seeing a different locum doctor almost every two weeks, each of whom trying different treatments, each of which proving ineffective, I asked to be referred somewhere else.
There then started a series of fortnightly trips to Bristol Eye Hospital, whose staff, I have to say, were marvellous. I went through endless blood tests, MRI, lumbar puncture and various discussions about what it might be, the favourite of which was possible Multiple Sclerosis. However in the end I had a biopsy taken from the eye and learnt in a phone call just before Christmas 2012 that it was ocular lymphoma.
On being referred to Haematology at Dorchester there were more blood tests, a bone marrow biopsy, MRI and PET scans, all of which fortunately seemed to say the cancer had not spread anywhere else. My chemotherapy finally commenced at Poole hospital in March, nine months after I had first noticed a problem. I had been told to take an overnight bag, but it was quite a shock to find I had to wait four days for a Hickman line to be inserted and then it would be four continuous days of chemo. This was because my cancer is very rare, with little research evidence, and therefore had to be treated as if it were a brain tumour. This was followed by ever increasing periods of neutropenia, having to stay in hospital for a further two weeks. After four treatments I had three weeks of radiotherapy and daily trips to Poole.
Throughout the whole period of treatment I have found the staff at Poole and Dorchester friendly and supportive, and at the moment my cancer appears to be in remission. I found it quite easy having to go back into hospital for each treatment, as if my brain had closed down and accepted that I just had to go with the flow. However the reality of all I had been through hit me after the treatment had ended, and I became quite depressed. My G.P. suggested the Living Tree might be a good alternative to anti-depressants, and indeed I have found that to be true.
It has been therapeutic to be able to talk about cancer with people who know what you have to go through, and I have found exploring different therapies very helpful. The other bonus to the whole experience has been the support of family and friends, who volunteered to help my partner with the endless daily drives to Poole for three weeks out of every four for the radiotherapy. It was a real delight when my niece brought her two year old daughter to celebrate my birthday in hospital.
I do feel now, thanks largely to the Living Tree, that I have come out the other side and am resuming old activities. The only down side is that I have not regained the sight in my left eye.