Forty-Five Year Saga
A Long and Uncertain Road
I am a 79-year-old male living in Auckland, New Zealand. After retiring as a lawyer, and prior to being confined to a wheelchair, I was involved playing golf, attending the gym, gardening and overseas holidays with my wife Jill.
My first indication of a problem was a sore back that developed in 1979 at which time I was in my early thirties. After consulting with a number of health professionals none of whom could diagnose the cause of my pain, which was getting very intense, I was referred to a neurologist who diagnosed a spinal ependymoma at T11 to L1. At that time the diagnosis involved a rather unpleasant x-ray test called a myelogram where dye is injected into the spinal canal and for the x-ray the bed is tipped up one way and then the other way for the dye to move up and down the spinal canal. After the test I was violently ill.
The tumour was resected in 1982 followed by a course of radiotherapy. I was warned by the neurosurgeon at the time that it was possible for the tumour to regrow and was given the example of a recent patient whose tumour had regrown after 29 years.
I thought after 30 plus years that I would be safe from the tumour regrowing but after a long hiatus it returned in 2015 and was treated with an extensive course of radiotherapy which left a small part of the tumour remaining.
Tumour Growth Required Necessary Lifestyle Changes
An MRI at the end of 2018 showed no change but a further MRI at the end of 2020 showed the tumour had returned and moved into the spinal canal. The tumour was partially resected in 2021, With no further radiotherapy possible following my earlier radiotherapy I was given 3 different courses of chemotherapy (including temozolomide, lapatinib and etoposide) all of which were unsuccessful, and the tumour continued to grow.
Jill and I lived in a house with many stairs, so it became unsuitable for me. We sold the house and purchased an apartment. The move was complicated by the fact that there was a 4-month gap between leaving our house and moving into the apartment so temporary accommodation was required.
The tumour continued to grow, and a further operation was required in January 2022 which resected most but not all of the tumour. Following the operation, I received an infection at the site of the surgery. I became very ill and required 2 follow up surgeries to clean out the infection and reclose the wound. I was then subject to an intensive 30 days of antibiotics given intravenously every 4 hours which was a rather tiresome process. This was followed by 6 weeks at a specialised Spinal Unit and by this time I was confined to a wheelchair as I had lost any control of my legs. Seeing the other patients at the Unit put my situation in perspective when I saw some of them who were young person’s facing a lifetime of paralysis. After 2 months in hospital and the Unit I finally got back home to Jill and our little dog now living in the apartment.
On returning home my condition required home help every morning for an hour to assist Jill in looking after me which was not an easy situation for her.
Later in that year my condition deteriorated, and I found the tumour had regrown once again. I had a further operation in February 2023 at which the surgeon was able to resect most but not all of the tumour after a 9-hour operation.
In November 2023 a further MRI showed that the tumour had grown considerably. It was 7.6 centimetres long and was now treated as a Grade 3 fast growing tumour. My neurosurgeon advised that he was not prepared to operate again as the risks involved outweighed any benefits to be gained. I was referred to outside palliative care as the hospital surprisingly provides no outpatient palliative care which means no further MRIs were offered.
In 2024 I moved into a hospital care home (not far from where Jill lives) and are well looked after by the nurses and carers.
Acceptance and Optimism
Throughout this time, I have always accepted my situation and remain positive realising that the tumour could not be cured and would always return.
I noticed on researching radiotherapy that there were new options now available. I recently managed to arrange a consultation with a hospital radiation oncologist. His response was that further radiotherapy would be unlikely to reverse any neurology or improve pain and would run the risk of necrosis of surrounding normal tissues.
I am currently paraylsed from just above the waist down but have managed to maintain my upper body strength through regular exercise. I have been given no indication of what the future holds for me with my ever-growing tumour but I manage to look forward positively.