Well what a crazy week it has been! The week before we had a holiday of a lifetime in Fuerteventura: eating, drinking, swimming, windsurfing, foiling and most importantly being together as an extended family with absolutely no talk of cancer (there was an official ban enforced by Zoe). The day before we flew back, Zoe started with headaches and vomiting; never a good sign if you are a brain tumour patient. I was slightly worried about the four hour flight home, but not for the first time a quick email to the nursing team in Cheltenham resulted in some advice on prophylactic pharmaceuticals – and fortunately I had the mobile pharmacy with me! The flight passed without incident, probably because Zoe was slightly stoned on benzodiazepines (a recommendation from her mother, a retired doctor and not the nurse) and asleep for most of the flight.
Five washing machine loads of laundry later, Zoe and I headed to London on the train. The key objectives: a perfusion MRI and some treatment, but it was also the day before Brain Tumour Awareness Month and the day that the All-Party Parliamentary Group on Brain Tumours (APPGBT) Inquiry Report “Pathway to a Cure” launched. We had arranged to meet Zoe’s MP, Laurence Robertson, in Westminster for coffee – we have been in touch with Laurence since Zoe’s diagnosis; raising issues such as access to treatments such as Optune and vaccines (not just for Zoe but for the 33 people diagnosed every day in the UK with a brain tumour). Laurence had kindly tabled three parliamentary questions and we were awaiting the answers.
At 8am (before we were due on the train at 10am), we received a PDF copy of the report. Zoe hastily printed it out and took it to read on the train – the highlighter pen came out and she was straight into teacher mode!
One cancelled train later we arrived at Paddington in the nick of time, deposited our suitcases with left luggage and hot-footed it across town to Westminster. My first time on the Elizabeth line…. Paddington to Westminster in 12 minutes, amazing!
Laurence was extremely generous with his time. Zoe spent 45 minutes explaining how she was one of the lucky ones as she had access to advanced treatments (such as immunotherapy and Optune) through crowdfunding and other means – she had also gained access to top consultants for second opinions through her private health policy, even though it won’t pay for the advanced treatments she wishes to have. She explained to Laurence that it was the people who don’t have the means or the ability to advocate for these treatments that she was worried about most; that and the insignificant amount of money that was being spent on brain tumour research in the UK – the biggest cancer killer of the under 40s’ (including children), which has received a meagre 1.3% of cancer research spend since 2002.
Laurence agreed to read the report, and while he didn’t yet have the answers to his parliamentary questions, he would keep us updated on progress. We also mentioned to him that there was a launch event for the report later that evening and asked if he could he attend? While he couldn’t, he said he would see if he could see if Zoe and I could attend.
We went for supper with our good friends Rob, Laura and George at The Gate in Hammersmith (an exceptionally good vegetarian restaurant) – then at 5:30pm the text came in – we were on the guest list! For the second time that day we hot-footed it across town to the Houses of Parliament. There were two reports presented that night – the first by the APPG, and the second by the Tessa Jowell Brain Cancer Mission. (Tessa herself was an Optune user like Zoe.)
The room was full of parliamentarians, campaigners and those at the top of their game in treating and researching brain tumours. We also met a couple of patients, like Zoe, and family members who had lost loved ones. It was a great opportunity to share Zoe’s experiences and advocate for change.
Tired, we jumped in a cab and headed back to stay with Zoe’s family in Barnes.
The next day, Zoe had her horrible vomiting again, so it was a slow start. We then had brunch with some of my university friends, which was a welcome distraction from the impending medicals. After brunch we walked 6km from Hammersmith bridge to Putney bridge and back on the other side of the river to Charing Cross Hospital.
Zoe had her perfusion MRI and then at 6:45pm we went to see the doctor; it was the 1st March and some of Zoe’s friends and family, like many people across the UK, were lighting candles at 7:30pm to raise awareness and show support for everyone affected, and remember those lost to brain tumours.
The result of the scan: the tumours had grown a bit more in the last six weeks. Zoe was, understandably, disappointed. The advice: she definitely needed to add more treatments. The question was which: more immunotherapy or chemo?Immunotherapy would “take the breaks off her immune system” and hopefully allow the immune response that the vaccine had generated to have a bigger effect on the tumour, but it could only be done in London or Germany. Chemo is a known beast to Zoe, with all the nasty side-effects it can bring, and no guarantee it would work second time around. Which to pick…? There is no good data to suggest which way to go, and the recent sickness and headaches had knocked her confidence, as she herself said: she had gotten used to feeling well. She decided to sleep on it and the doctor kindly agreed to see her again the next day. We concluded with talking strategies to get her sickness and headaches under control – vitally important for her quality of life.
The next day we headed back, suitcases in tow, and visited Maggie’s (we thought it would be good to try a different one out). Zoe had, after much careful thought, decided to go for immunotherapy, so we headed in to sign the disclaimer. This treatment has potential side-effects (but so does chemo), as by “taking the breaks off the immune system” it can start to attack healthy cells, and cause autoimmune diseases or any of the “itises”; but it doesn’t cause neutropenia or low platelets (and the risks that those things come with) like Chemo does.
Sadly, as Zoe is going to have a drug “off-label“, the doctor has a lot of paperwork to complete to justify his decision to do this (rightly so; we can’t just have oncologists prescribing whatever they fancy without some checks and balance) – therefore she couldn’t start treatment that day, and we are still waiting to hear when she can start.
We headed back to Paddington station and caught an earlier train home to be with the boys.
The next day we awoke to the news that there was going to be a parliamentary debate! The report was the first step, but an actual debate on funding – even better! Good debate is good politics and therefore we need to get as many MPs to that debate as possible. Therefore to that end, if you would like to, please could you encourage your MP to attend. There is information on how to do that here:
https://www.braintumourresearch.org/media/our-blog/blog-item/our-blog/2023/03/03/a-westminster-debate-on-brain-tumour-research-funding
Have a good weekend everyone
M x
#teamzoe 
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