Finding a definition that portrays the meaning of the word ‘hope’ to cancer patients is impossible. I’ve searched every dictionary due to my fascination of its importance and nothing depicts it accurately enough.

One day however, through the enlightening online course ‘Deepening Into Life with Donna Lancaster’, we were tasked with reading ‘The Book of Joy’ by His Holiness The Dali Lama, Archbishop Desmond Tutu and Douglas Abrams. The entire book is utterly remarkable, just reading it itself gives pure joy. Having both been through extraordinary adversity, they are, to put it mildly, fairly qualified to write a book on how to find joy even in the most unimaginable pain. 

They talk about many aspects, but an entire chapter is dedicated to hope. There are too many quotes and my book is heavily scored but the following passage encapsulated everything about what hope has meant for me:

‘“To choose hope is to step firmly forward into the howling wind, baring one’s chest to the elements, knowing that, in time, the storm will pass.” 

As the Archbishop was explaining, hope is the antidote to despair. Yet hope requires faith, even if that faith is in nothing more than human nature or the very persistence of life to find a way.’ 

Wow. Reading it, I wept big heavy tears. It wasn’t about being positive or denying what I was going through, it was about having the immeasurable courage and vulnerability to accept it but also persist and live every day like I might defy the odds. And even if I don’t, I’ve let that belief be the shield to any impending darkness that would have destroyed the days I had left.

Having hope is far from easy. It requires the hardest, soul searching strength to fight not the cancer itself but the system, the statistics, the overwhelming information of what to do and where to go next.

But what it gives back is a quality of life for however long you have, be it a day or 50 years. To put it bluntly, if I’d just accepted that nothing else could be done and therefore my prognosis was the average length of survival for someone with Stage 4 Glioblastoma (12-18 months) then my wait on death row would have been just one big ticking clock. 

I know this because of days at the beginning when I did allow the statistics to consume me. They were thankfully sporadic but when they came they were so bleak that I didn’t know how I would get out of bed and have normal conversations with people. It all seemed so pointless and at the same time so pressurised. 

How could I make commitments, book holidays, work again when I didn’t know what state I’d be in, let alone alive? Would this be my last Christmas? How could I make sure my daughter remembered me?  Every ‘goodnight’ was followed by thoughts of whether it would be the last. 

It was so, so heavy and murky and all consuming. 

But then in the midst of the darkness I was given the greatest gift, a little tiny shimmer of hope by my lady-in-shining-armour, Jess Mills. Introduced by a friend, Jess read this blog then reached out.

Tragically, Jess had lost her own mother, Baroness Tessa Jowell, just a few months before to brain cancer as well. As explained in an iconic final speech in parliament, Tessa realised through her own diagnosis, how very few options there were for brain tumour patients. No new drug developments in the UK for over 50 years have led to the worst cancer survival rates in western Europe. With the enormous support of friends and experts across the world, they could see that new, innovative treatments were out there but just not offered in this country. 

The frustration of knowing that there could potentially be a lifeline but it’s out of reach because of where you live was colossal and this was what Tessa was pleading to change. 

Speaking to Jess, I began to understand however that despite the frustration, at least there were more options out there than what was being offered by my Oncologist if I was prepared and able to find them. In that moment, she gave me the life changing knowledge that however slim my chances were and however hard it was going to be, I didn’t have to live in a world that concluded with these devastating statistics and maybe there was something out there that could allow me to hope for more.

And so, I did. She introduced me to Dr Jack Kreindler, a physician and research fellow who has spent the last 10 years helping to guide patient,s with some of the most complex cancer cases, on decision-making around innovative treatments. He talked me through the process of how to find options that other patients across the world were receiving and then understand and assess if they were right for me.

As he’s not an oncologist, he didn’t tell me what to do, but his expertise meant he was able to discuss the pro’s and con’s of anything we found and be my sounding board in a way I could never get to with my own oncologist, at the time. Whilst it meant that it was still my decision, having Jack there meant I was empowered and informed enough to be able to make the choice sensibly and safely. And this has to be crystal clear: Hope is vital but medically and morally wrong if something is unsuitable or completely pointless based, not just on clinical grounds, but with many other personal considerations, too. 

A good example of this was when one clinician (not in the UK) was keen for me to go abroad to take a drug that was going through a clinical trial and had shown some promising results. I had the right genomic mutations for it, but I just didn’t feel like I knew enough about it, and it felt so confusing as to who to trust. 

So, I asked Jack and he reached out to the oncologist running the trial in the UK for peer-to-peer advice. They explained that while I was indeed an ideal candidate for the drug, at the time they were experiencing very high risks of bone marrow toxicity. They just hadn’t yet understood exactly the right dosage. Having this trusted information meant I could weigh up the risks and in fact it was so expensive and stressful it outweighed the benefits. I’d also just had my tumour resected allowing some time of stability to give chemo a chance which all led me to come to my own decision with Jack’s guidance – at that point in time, with this option, I didn’t want or need to take the risk and we could look at something else. 

Comparing that experience to other patients where they’re just told firmly ‘no’ by one clinician to anything and everything outside the NHS and ‘yes’ by someone else abroad is exactly why I was so grateful to have someone who just understood that I needed the information and guidance to look at it all and come to my own empowered decision. 

As documented here, I did decide to do other novel treatments which were more suited to me, including some that were abroad which were still deemed experimental but with far less risk. 

It became a monumental and logistical task, researching, analysing and assessing each option:

  • Am I a good candidate? 
  • What are the clinical opinions on what evidence there is?
  • What are the potential side-effects / risks?
  • Can we afford it?
  • Will I have to travel and how often?
  • What impact will it have on my quality of life?
  • What impact will it have on my family’s quality of life?
  • What else am I doing and how do they work together?
  • Do I need to do this now or can it wait?

So big was the job that my career in strategy and managing large scale projects came into its own and I would often say over the spreadsheets, that I felt like I was project managing the most important project I’d ever worked on: My life.

But knowing the most I could and the confidence that I was doing everything in a safe and trusted environment led me to a plan of action that was right for me. I knew and accepted it might not work but I also crucially started believing in the ‘What If’.

So, here we are 3 and a half years on from those decisions. Answering that ‘What If’ with clear MRI’s and a classification of a ‘long term survivor’. A real-life shining example of why we should be allowed to hope. 

That’s not in any way however, to say I’m cured or ‘cancer free’. I’m progression free but due to its nature, if you look at those pesky statistics, I still have less than a 5% chance of it not coming back within the next 2 years and me surviving.

Not that you would know it from my quality of life flying the flag of hope. Now that my treatment has finished, I work, socialise, drive, book holidays without a second thought to what might be happening in a few months. I parent like any other and have made memories that, only on reflection, have I realised the significance of. I have the same stresses and frustrations as everyone else during and since the pandemic but I also have the most incredible new superpower to take absolutely nothing for granted and see the pure, stripped back beauty in everything. If I was to only have a day left, how grateful I would be to have lived the last 3 and a half years like this.

I said at the beginning of writing this blog that I was determined to make this a defining point in my life and turn it into something positive. I am very, very proud of myself to know that I have done exactly that. I don’t believe anyone is given a cancer diagnosis for a reason and I feel strongly that no one should ever say that to someone. But I do believe it has brought out the best in me and shown a side that I never knew or could even imagine I had. 

It is this acknowledgment of my abilities, alongside the experience I’ve had personally and subsequently from guiding other people – just like Jack did for me – that has given me the courage to step into this next chapter of my post-diagnosis life. 

Co-founding, along with Dr Jack Kreindler and Marje Isabelle, a new business safely navigating and coaching cancer patients beyond standard of care to innovative treatment options that are right for them. Having a way to help people understand, make informed decisions and be able to access those little glimmers of hope just like I did, means so much to me and hopefully to those we can help too.

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