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My 4 lives: Peter's brain tumour story
Peter has had a crazy life since 2006. He explains why.
Life One
I was born in Lewisham, South East London. I initially went to school in Bexleyheath. In 1979 my first job was as a chef at the Sussex Cricket Club; I saw and talked to all the best players such as Gower, Bothham and Imran Khan. In 1981/82 I worked on a boat, the QE2; I went to the Falklands War; I have a Medal. I was an Area Manager at Ladbrokes, in London, for about 8 years. I left Ladbrokes as I wanted to do a degree, Earth Science, at Kingston. I am an advanced diver and have done over 2,000 dives, the majority around the UK. I bought and ran a sport shop; I also ran a hotel, restaurant and bar for my brother Mike, in Bognor Regis, near my son Darren.
But in February 2006 I started to feel a bit odd. I stopped chatting at work and when I finished work I just went to my room and slept. My girlfriend, Lucie, thought I was not well but in March, due to my grumpiness I said she should leave. By April/May I was feeling worse and worse but my brain could not sort the problems. At work I was told I was not talking to staff and customers and not doing anything except working and going to my flat. My brother and his wife thought I had depression and was not a good person for the hotel. They suggested I left. So I did and gave a month before leaving. In June 2006 I moved back to a mate's house in Kingston, where my girlfriend Lucie was living.
Life Two
In July 2006, I was still not feeling very well. While my mate and my girlfriend went to work every day, I just sat around. One day I went with a couple of mates to play golf and I played the first 9 holes quite well, then in the 10th hole in the 2nd shoot I missed the ball. I tried again and it went about 40 yards, but on the next hit I fell over.
In the days that followed I felt worse and worse. I had no local doctor so walked into my local hospital. Initially they thought I was depressed, but the doctor for depression said he believed it was not related to depression. So they decided to check me all over for the next 2 days. I was told there, via an MRI scan, that I had a head problem. I was moved to another hospital and had an operation.
A week later I saw a doctor at a different hospital and he said I had a brain tumour (Gioblastoma Multiforme), and told me it was not curable. I had a medium survival outlook, with approximately 1 year to live. What a shock. I was told this with my sister (Jackie) her husband (David) and my girlfriend (Lucie).
We all initially cried and cuddled. What a shock. I was told to have 6 weeks of radiotherapy, then to enjoy myself as much as possible until I started feeling bad again. I have a son, Darren; I phoned his Mum (Moira) and said, "I’m dying". I said I would come to Bognor the next day and tell Darren and his brother Matt. I had seen the boys every second weekend since 1989 (when Darren was born). I also told my Mum and Dad in Spain, and my brother (Mike).
Both my sister Jackie and my girlfriend Lucie had found out about a drug that would be good for me, Temozolomide (Temodal), which would need to start being taken on the same day as my radiotherapy. Jackie sent a letter to my doctor. He said, "the drug is good for a bit, for Peter, but via the Primary Care Trust and NICE it is not available for Peter”. I said we would buy it (it cost about £12,000), and he told me that if I got that particular private drug, then the rest of my treatment would have to be private. About £120,000 or so, not good.
Having been turned down in Sutton, I decided to talk to my town (Kingston)'s Primary Care Trust, and initially they, too, said no. After a long search, my Mum and Dad got hold of the drug in Spain, where they have lived for the past 25 years. Initially they sent me 2 weeks' worth, which arrived one day before my radiotherapy started. It cost us £800 a week, so I started the drug at the same time as the radiotherapy.
Then a young doctor agreed to send a great letter to the PCT regarding my illness and said I should have the Temodal for free. A few days after radiotherapy started, a phone call told me I could have the Temodal free.
In mid January 2007 I felt unwell again. I went to hospital and they said the Temodal needed to stop as it had done its work as much as possible for me. Only a bit of time left. I was sad and sorry.
At the end of February 2007 I was asked to go back to hospital. I was told, "We have a trial drug." The doctor said he would have to test me over the next couple of weeks, to see if I could cope with the trial drugs.
Eventually I was given the chance to take the new trial drugs, Lapatanib and Pazopanib. I was the second person to take the drugs in the world (a girl started in USA a few days before I started). After a couple of years I was told I was the best drug person they have had. Initially I smiled, but then I thought, "poor other drug takers around the world" (initially about 90 people). I said to myself that if it only added a few months to their lives then that’s good as it added an extra half a life... or so.
NB: If I hadn’t got hold of the Temodal then I might not have been well enough for the trial drugs, which ended up keeping me alive.
Life 3
A few months after I started the new drugs I was told that there had been no change to the original area around my brain tumour that was cut out - it wasn't getting any worse or any better. I was told that this was very good.
It was not known what my life expectancy would be; no answers were possible.
I’ve been depressed on and off over the years. This has been caused by the tumour and not knowing what type of life I have got. I am now getting help for depression from my local psychologist. I first started seeing her in April 2011 and she’s very good.
On 12th December 2010 I was told my blood had become excessively thick. I hadn’t been well for a few weeks prior to this and the doctors said to stop taking the trial drugs. However, after a month the doctors decided that the problem was not related to the trial drugs so I restarted them (the first break with the trial drugs since I started them in 2006).
Life 4
On Friday 7th March 2011 I was on a regular check up day at hospital. The doctor told me that there had been a meeting between the doctors and other medical staff. Between them they had worked out that my brain tumour had stopped its problem due to the trial drugs. A doctor had written in my notes: "It is remarkable that he has had such an amazing response to the treatment." Based on the scan I had had, the doctors said that no further treatment was needed at present.
My outlook now could be years rather than months, how amazing! For the past five years, I had been preparing to die and now I have a new life before me. For now!
What a crazy life!
NB: I have been told that the trial drugs I took are no longer given for brain tumours as most, if not all the others have not been helped by it. But there are new clinical trials happening all the time.
If you are invited to take part in a clinical trial as part of your treatment you can find out more in the Brain and Spine Foundation's Brain tumour booklet and Clinical trials fact sheet.
Further information
If you have any questions about brain tumour, clinical trials or any other neurological topic, call the Brain and Spine Helpline on 0808 808 1000 or email helpline@brainandspine.org.uk.
If you would like to contact Peter, please send an email to webenquiries@brainandspine.org.uk and we'll forward your message on.
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