The New Frontier and a Plea for Awareness

In previous posts I’ve touched on some new treatments I will be undergoing completely separately from what is available in the UK. 

I feel like now is the time to talk in more detail about the two biggest ones, one of which is only a week away and the other starts at the beginning of next month. 

They are both at the forefront of cutting-edge cancer treatment across the world.

They are also both designed to prevent Glioblastoma from spreading or returning if you are lucky enough to go into remission which I’m fully determined to do. To give a wider picture the rate of Glioblastoma reoccurring is mostly inevitable so even if I get through this now, I am very likely to face it all again. 

These treatments are leading the way to prevent this happening.

The first is a device called Optune which involves wearing adhesive patches known as transducer arrays on my head (after my hair has been completely shaved off on Monday 15^thApril) which creates low-intensity, wave like electric fields call Tumour Treating Fields (TTFields) to the location of the Glioblastoma tumour. These TTFields interfere with the tumour cell division by slowing or stopping them from dividing and therefore growing. It may even destroy the cells. 

The second is a personalised immunotherapy vaccine developed and provided in Germany. It will involve me going to Tübingen once a month for 2 years for injections and very close monitoring. Thankfully Tübingen is meant to be beautiful and who knows, with all this new space in my head maybe I’ll learn German? If anyone wants to know more information on the vaccine itself I’ll be doing another post with more details once I’ve gone there for the first time in May.

Both have been very big decisions which have taken an immense amount of consideration due to the huge lifestyle changes they involve amongst sadly big financial considerations. Every doubt however has been banished every time I look at my daughter and remember how I promised I would leave no stone unturned especially if the potential benefits outweigh any side effects and life-style changes.

Clearly for most people the most dramatic physical change will be me losing my hair although I will be able to wear breathable wigs and head coverings. I’m still undecided about these however as the idea of looking like an extra from a sci-fi film could be more appealing. It’s definitely one way to walk down the street or get on an aeroplane. 

Jokes aside I’m not going to lie and say I’m not nervous, in fact as with all things new, I’m really scared which is almost definitely why I’ve been feeling so up and down recently. Both can be stopped immediately if any side effects occur but with anything medical it’s always incredibly unnerving not knowing how you’ll personally react. I just have to keep telling myself that as neither are actually dangerous I’ve got nothing to lose, apart from my hair which can grow back, so why would I not at least try them when I am fortunate enough to be able to do so.

With regards to my hair I have decided to firstly donate it to a children’s charity called Little Princess Trust who make wigs for children with cancer and secondly to raise money and awareness for another charity very close to my heart called ACT For Cancer.

The story behind this is that devastatingly what I have learnt in my journey since I was first diagnosed only a few days before Xmas 2018, is that the vast majority of these cutting edge options and trials for ALL cancers, not just brain cancer, aren’t yet available in the UK and therefore most people are unable to access them which actually translates, shockingly, to the UK having one of the worst prognosis results for many cancers within the developed world.

For me, luckily, I am in a very fortunate position to have access to some of these options and even just advice available in other countries which apart from making me so emotional at how grateful I am it also makes me feel very guilty and desperately sad that others can’t.

Before she died from Glioblastoma herself, Dame Tessa Jowell set up a charity with her daughter Jess Mills and Dr Jack Kreindler called ACT For Cancer which was created to deliver her legacy by enabling new ways of delivering the most cutting edge treatment and care to ALL cancer patients facing progressive, effectively untreatable cancer throughout the NHS, so the best can be made available to everyone not just people like me. To read more about ACT and to hear Dame Jowell’s final speech in parliament which she used to talk about how appalling the situation here is, visit https://www.actforcancer.org.uk 

In short ACT For Cancer aims to make the UK have universal access to the very best, to become the smartest place in the world to get treated or for at least research to happen for currently more or less untreatable cancers like half of all cancer patients will eventually face. They have a new training programme for UK Oncologists to be trained to be the best in the world, and new science collaborations rarely seen in research. Eventually they will bring the same model to all cancers, to give hope to all patients with this currently incurable disease. There’s also a recent article in WIRED that explains a bit about what this approach means, https://www.wired.com/story/cancer-treatment-darwin-evolution

So whilst I’m not asking for help to pay for my own treatment I am asking for help in raising awareness of ACT For Cancer and their mission and if possible for a donation, however much you can afford, to help them with their cause. As 1 in 2 people will be affected by cancer in the UK just think how you’ll be investing in your life or someone very close to you and our future generations actual lives too. 

If you’d like to help then I have set up a Just Giving page which you can donate to – https://www.justgiving.com/CoconutAndButtercup

Thank you and I promise to keep updating on how it all goes.