Treatment History

My stages of treatment so far...

Finding those you trust

I have been very lucky to have Neuro consultants, Oncology Consultants and Dieticians that I have bonded with and had a good rapour. Where I have had questions I feel they have answered openly and honestly and where I have wanted to know other options I have been given what they can offer but also other options that they don’t do but a list of names that I could speak to.

I will be honest, there have also been some that have come across as old fashioned “car sales person” who seemed to just want money from you or who refused to offer anything expect their solution. 

I have never been one to be bullied and like to get into detail to understand; not everyone is like this and all I can suggest is that if you don’t feel comfortable or confident take a partner, family member or friend who can support you and make you feel stronger.

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Stage 1 - Neuosurgery (NHS)

On the 16th April I booked into the the surgery department and was soon sat with my Anesthetist team talking through being awake for the whole procedure and what I could expect to feel, or more interestingly not feel.

It only seemed liked 30 minutes, but based on my wife’s pacing around was more in the hours of surgery. With the tumour close to the speech area of the brain, I was constantly being chatted which the tumour was cut out - one of the most comfortable reclining chairs and relaxed experiences I have ever had; medical or otherwise.

After a stint in recovery, I was soon back with my wife and family - no limit to visiting hours.

The next day was ward round and I was discharged. It was great to be able to get home, but slightly odd that the previous day I was undergoing brain surgery whilst awake.

Stage 2 - Oncology Primary Protocol (NHS)​

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New stage, new team - I was with my Oncology team now planning my Radio and Chemo.

On 29th April I was with my Oncolcogy consultant and the next day I was being scanned and fitted with my mask for my radiotherapy treatment.

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Whilst I waited for the mask to be built and time for my surgery to relax I was interviewed about the fast feedback on my results which I hopefully gave some good press and support for the trial. Not knowing and having to wait is a hard journey to go on; I was going on a hard journey already and with this being one less thing was an honour for me too be part off, making my life and my families life so much easier.

28th May 2025 I started my 30 days of radiotherapy and my 42 days continuous chemotherapy.

The radio therapy sessions were quick and easy. It gave me some isolated hair loss. The chemo I also found “easy” with it being tablet form and having little nausea impact on me (luck more than anything, but i will take any bit of luck).

30 days of daily trips to the radiotherapy department become like a job, but with no car licence to drive. Neigbours, family and friends were very helpful in both dropping me off and picking me up from the hospital. 

The 42 continuous days of chemo tablets at least removed the number of visits to hospital and meant I could rest at the weekends at home. It only meant a blood test a week and a meeting with the Oncology team a week which was all at the same place as the Radio. My blood was good which meant each week I could go toot he pharmacy to collect my following weeks chemo tablets.

Finally the day came for me to ring the bell. 30 days of hospital visits and 42 continuous days of chemo tablets. Stage 1 was done and, as I call it, I had 4 weeks off for good behaviour. 

Stage 3 - Oncology Adjuvant Protocol (NHS)​

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Welcome to my next stage. Finishing my radiotherapy was bliss, one less need to visit the hospital. The chemo also moved to one week per month which meant a lot less visits aswell. The 5/23 as it is often known as each the process follows a 4 week program rather than monthly program. Romans really should have pushed the 13 month year, would make things easier in som many ways :)

I quickly learned that the nausea tablets would be needed. My first day left me vomiting and crying in the bathroom until the nausea medication started to work. The Macmillan team were on hand to give support and a quick increase and change in nausea medication brought everything under control. Another issue was around the constipation caused from the increase in meds which took time to find the right balance of when to take, what to take, how much to take.

Additional Treatment

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Histology

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Being part of a surgery trial for analysis in what the tumour was, was amazing. The time for waiting for my results was pretty much instantaneous. I did have a grade IV Glioblastoma. My tumour was still sent off to London (circa a nine week process), but we knew what we had and the new stage of the planning could go ahead. 

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Oncotherm (Private)

There are lots of options, some need travel overseas, some are on insurance and sadly little to none are on the NHS. 

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I chose Oncotherm based on location, what I felt it offered my personally and who I was going to be dealing with. The website https://oncotherm.com/ explains what it is much better than I can

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I have Oncotherm as a supplement to the chemo tablets I take and attend my 1 hour session every other day during the 1 week period I have taking the chemo tablets.

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It is quick, simple and does not feel constricting in anyway.