Southampton General Hospital is the Neurological specialist for the South Coast. After arriving there by ambulance I believe they recognised my symptoms. I was put on a course of intensive antibiotics.
The next day they carried out ECG, brain scans, chest x-rays as well as a magnetic scan of my stomach.
Once they had the results of the scans a neurosurgeon came up and displayed the head scan on a computer screen and pointed out what they thought was a brain tumour.
A brain tumour - it could not happen to me is the first thought.
The surgeon was wonderful in explaining the what and how of brain tumours, how they could be treated and the longer term prognosis.
He explained that the first stage of treatment would be a biopsy to identify the type of tumour and they could then determine what further treatment would be required.
As we were so far from home they though it would be better if I was referred to a London Hospital, and following discussion with my own Doctor it was decided to refer me to Kings College Hospital at Dulwich. Once this was organised I was discharged, given a wide range of tablets to be taken and we made our way back to the boat and the following day motored it back to Gosport and on to its mooring. As I am not allowed to drive, Dorothy drove us home.
On the following Friday I got a phone call from Kings asking me to come and see them on the Monday. We are fortunate that from where we live there is a regular train service from our local station to Victoria, that stops at Denmark Hill station which is only a few hundred yards from Kings College Hospital.
We met a neurosurgeon and he said that they had received all the scans and other data from Southampton. A team had reviewed this on the previous Friday and had decided that they needed to carry out the biopsy to diagnose the type of tumour. They would admit me on the next day (Tuesday) and carry out the operation on the Wednesday. He then went through the procedure, explaining how the operation would be carried out and that they would have the biopsy results early the following week. He said that it was a routine procedure and that there were little risks. As I was fit and had no other medical issues, also that as the tumour was not very old the outcome looked good.
We were given the appointment letter and told where and when to report for admission the following day.
Returning home Dorothy and I had a talk, discussing both the pessimistic and optimistic outcomes. Something like this suddenly makes you examine your life.
Returning to the hospital on Tuesday I had a great deal of trepidation - not worry, but someone drilling a hole in your head is not something that happens very often. The surgeons came up and again went through the procedure and reassured me.
A radiographer came and attached markers to my scull that would be used with a further head scan to identify exactly where the tumour and other parts were. The head scan had a definition of 0.5mm. This would then be used with a machine like a GPS to enable them to very accurately position the needles that would be used for the biopsy.
The scan was carried out early on the Wednesday morning and early afternoon I was taken down to the theatre. Once the oxygen mask was fitted and the anaesthetics injected I do not remember anything until coming round in the recovery room a few hours later. As I regained consciousness they checked that my bits were working, arms, legs, pulling, pushing, where was I, date of birth, vision. All seemed to b OK. I found that I had a large plaster down the right hand side of my head.
Once back in the ward the surgeon came in and said that the operation had gone fine. They had obtained a good biopsy sample and had managed to remove most of the mass of the tumour.
A phone call to Dorothy passed on the news.
On the Thursday morning I was visited by a group of physiotherapists. After a short session of pulling and pushing arms, lifting legs and gripping hands I was asked to get out of bed and balance on one leg, then the other. After a walk along the corridor I returned to bed and they left.
A short while later the surgeon arrived and asked what time Dorothy would be in as they would be letting me home later that day. As he left Dorothy arrived so he came back and went through what would now happen.
As the operation had gone so well and I had recovered very well they would let me home. They would then want to see us again on Tuesday when they would have had the biopsy results and the medical team would have decided what, if any, further treatment would be required. This would comprise either radio or chemo (tablets) therapy, or perhaps both. They would then monitor me to see how things progressed.
A nurse came to change my dressing and to show Dorothy how to do this in case of any leakage or other problems. This gave us a chance to see the scar and the ten staples that held things together. The camera on my phone was used to record this. The piece of bone that had been removed had been replaced and we were told that it would grow back in place in the same way as a broken bone would.
We were given a bag of tablets, with a schedule to be followed to wean me off of the steroids that I had been taking, plus the appointment letter for the next Tuesday.
We returned home by train.
The next morning we found a small spot of blood through the dressing which Dorothy removed and replaced. The next few days passed without problems, with me taking the tablets as prescribed.
Tuesday morning arrived and we set of for Kings to receive the the results of the biopsy. Not the result I wanted to hear as the tumour is malignant and I will have to undergo a course of chemo and radio therapy. The tumour is a Gliobiastoma Multiforme Grade IV.
I will have to go to St Thomas's Hospital to met the radiological team and then it looks like daily radiological treatment for about 30 sessions initially, plus the chemo tablets. Back to commuting to London daily.
They said that they will not be able to cure the tumour, but will have me on a programme of long term management, with regular monitoring by brain scans. I am being quite philosophical about this and do not intend to let it beat me. I will undertake the treatment and see what the long term results are.
Off to St Thomas'. Here we met Dr Brazil, a radiological oncologist. She explained that I would undergo a course of six week radiotherapy and a course of chemotherapy treatment. She also explained what the treatment would involve, the possible side affects and asked me to sign a consent form. I have no option! I was given a sheet showing the treatment schedule: Temozolomide (the chemotherapy tablets) and Radiotherapy for six weeks, Monday to Friday, with only the tablets only at weekends. Then have four week rest and a brain scan six to eight weeks after the .radiotherapy has finished. This would be followed by a six month course of chemotherapy only, with a six moth schedule of chemo tablets for every day for 5 days and then 23 days rest, (a 28 day cycle) repeated six times.
I was also asked if I would take part in a a National Brain Tumour Study that is being carried out by the Institute of Cancer Research, which I agreed to. This involved giving a blood sample and completing a questionnaire. They would also have access to my medical records and previously obtained tissue samples. Another consent form and blood sample taken.
The next visit was to Guys Hospital to collect my first batch of chemotherapy tablets. These were handed over in a plastic bag labelled “Toxic” - and I have to swallow these! Also supplied were antibiotics (as the chemotherapy may affect my white blood cells); anti nausea tablets (in case required) . I also have to continue to take daily tablets to prevent further fits.
The chemotherapy course stared on 21st October, taking the first dose of tablets, followed by attending St Thomas' the next day to start the radiology treatment.
After the first week of treatment, apart from tiredness and minor stomach upsets, I still feel fine, nowhere near as bad as had been indicated could occur in the masses of papers I had been given. explaining the treatment and the drugs and their effects. Maybe they were just being careful.
I cannot praise the treatment that I have received enough. I am sure they and I feel that the investment will be worthwhile, from my side because we had a granddaughter born 21 st November and I want see her grow up. Probably the best motivator I could have to fight this.
