Our Great Escape!

In this guest blog post, Shine member and new network leader Daniela writes about her experience on the January 2020 Shine Great Escape.


Daniela

Blog post author Daniela

I became involved with Shine after my cancer diagnosis in April 2019. Since then I’d heard a lot about the Great Escape from various people and I so wanted to take part! Phrases like ‘surrounded by people who just get it’ and ‘friends for life’ inspired me to apply and made me really look forward to going.

Initially I wanted to meet like-minded people who were younger and needed a little support to find their way after diagnosis. Although I had had counselling post-surgery, I really wanted to discuss, share and learn from others who had been diagnosed with cancer and have the freedom to not have to explain – just be understood.

The more I found out about the Escape, the more I realised how much could be gained from the experience. I began to think about the issues that were still troubling me. I called them the ‘spaghetti junction’ thoughts and emotions. I hoped that they could be untangled so I could find a clearer direction for the future and begin to understand my thoughts and feelings more, rather than just experience them.

In reality, the Escape far exceeded my expectations. Yes, I was surrounded by people who got it. Yes, I do believe that I’ve made friends for life. And yes, I have begun to untangle the spaghetti junction of thoughts and emotions – but I can’t even begin to express how much more I gained.

The Escape is completely safe, giving you the freedom to explore your thoughts and feelings without judgement. There is a whole lot of love, support and understanding from Shine Directors Ceinwen and Emma, the peer support leaders, the counsellors, your fellow ‘Escapees’, and this year even from some rather lovely alpacas!

alpacas

The stars of the show?

All Escapees are at different stages of their diagnosis, all different ages, family backgrounds, and so on, but somehow none of that matters. As the weekend progresses, it’s as if a glue (metaphorical, of course!) is spread across the group and bonds you together. In some discussions you may take more of a lead and provide support and understanding for others, and in other discussions the group will support you. There are no boundaries and no trump cards on the Escape. There were some tears, but most importantly there was empathy, advice, guidance, and lots of hugs.

What I took away from the weekend, apart from a few extra pounds after having a cooked breakfast every morning (optional of course!), is a greater sense of perspective and acceptance. On diagnosis, my thoughts were ‘this is such an inconvenience, I really don’t have time for this’. Then I realised that no matter what I did or felt, I had to put my faith in my doctors and take one day at a time.

Now I am not in so much of a rush to get back to the way I used to be. Instead, I have begun to accept that there will be a new normal. I accept the need to be kind to myself and allow myself the space and time to heal both physically and mentally. Life can change in a moment, so now I try and fill my time with the people I love and who love me, doing what I actually want to do – or not do, as the case might be. It’s all about JOMO now!

I feel proud of everyone I met at the Escape, and proud of myself, for everything we have endured and still do. You know what? We are a pretty awesome, tough, and (dare I say it?) brave and inspirational bunch!

For anyone pondering the Escape, please take the step and fill in the application form. The Escape is not a ‘relaxing spa weekend’ and at times it can be emotional. You do end on a high, though, and it’s a big one! If you are reading this and have any doubts about applying, please don’t worry and do it. It will be a weekend that will stay with you for life (in a good way!), and you get a free t-shirt. It’s a win-win!

I must give a special shout-out to Ceinwen, Emma and all the volunteers (including Tatum’s yoga balls!) for their time and support. On my return home, I’ve described the Escape as 10 counselling sessions condensed into a weekend. It sounds intense and it is, but words don’t even begin to do justice to the support it brings.

Shine has been the main charity to support me since diagnosis. My experience of the Great Escape has cemented in my mind that I want to become a more active part of the Shine community. I am now becoming a London network leader (exciting!) and I would also love to be a volunteer peer supporter at an Escape in the future. Maybe I’ll see you there one day? I hope so!

windy escapees

We did it! Our Bournemouth 2020 Escapees

My year on a clinical trial

In this post, Shine blog editor Caroline shares her experiences of participating in a clinical trial for advanced melanoma.


When I was diagnosed with mucosal melanoma in May 2017, the outlook seemed bleak. NICE guidelines for this rare form of skin cancer were still in development, so there was no agreed, defined treatment pathway for clinicians to follow. I had multiple operations to remove my primary tumour, but the pathology results after each procedure showed residual cancer cells. No other treatments were available. I was told that the cancer would ‘almost certainly’ spread, at which point it would become incurable.

CarolineJames_mindfulness

Blog editor Caroline

I’d never heard of this type of cancer, nor had many doctors. There are only 1.5 cases of mucosal melanoma per one million people, so nobody was talking about it. I considered becoming an advocate, perhaps educating primary healthcare providers about the symptoms that several GPs had failed to spot. Then I met a new GP who proclaimed that my condition was a ‘once in a career’ diagnosis. Advocacy started to look a lot less appealing. How many GPs would I have to reach in order to find just one who would later diagnose mucosal melanoma? I wasn’t about to give the rest of my life to this disease. Instead, I resolved that if – or when – the cancer returned, I’d play my part by participating in as much scientific research as I could.

In January 2019, events forced my hand. Melanoma spread to my lungs the previous autumn. My new diagnosis of stage IV cancer had made me eligible for cutting-edge immunotherapy – often heralded as ‘the future of cancer treatment’ – and I’d completed the course in December 2018. But the immunotherapy didn’t work. There were no more standard treatments in the newly-published guidelines (melanoma is notoriously resistant to chemotherapy), so we would have to start experimenting.

As a patient, applying for a clinical trial felt a bit like applying for a job – only with no control over how I worded my CV. My oncologist had presented me with a couple of different options to pursue, and I selected a phase 2 trial which used a drug to target a specific genetic mutation in my disease. My primary tumour had been genetically tested in 2017 so we knew that I had the relevant mutation, but I had to undergo several tests to make sure that I satisfied the other trial criteria. Regular brain MRIs can be scary enough, but they take on a whole new level of meaning when you know that finding just one small brain tumour (a reasonably high likelihood when you have advanced melanoma like I do) can end your chances of treatment.

btf

One husband, no cancer treatment

The trial application process took around one month to complete. Between hospital visits and drafting my end-of-life care instructions, I also managed to get married and go on my honeymoon to Athens. My life was full of extreme highs and extreme lows – with the question ‘what if I don’t get in?’ always buzzing away in the background.

I was cycling along the beach when my clinical trials nurse called to say that I’d been accepted onto the trial. A few days later I returned to hospital to see my oncologist and complete the trial paperwork. In three years of cancer, I’ve signed multiple pre-treatment forms that acknowledge ‘risk of death’, but reading and signing the trial documentation felt more monumental. Although I felt physically well, the likelihood of death loomed large. And this medication was experimental. Who knew what would happen?

All clinical trials are different, but they usually share one commonality: patients are observed. A lot. My trial medication is in tablet form so the regimen doesn’t seem too intrusive, but I follow a strict twice-daily dosing schedule and have to record the exact times that I take the medication on a special diary sheet. If I don’t take my tablets, I have to note why not. The two pre-defined options on the form are the somewhat critical ‘forgot?’ and the oddly cheery ‘vomited?’ – but I’m pleased to say that I’ve never had to tick the latter! I have very few side effects from my current medication, and as a result I’ve been able to live a relatively normal life. I even took my trial drugs with me on a once-in-a-lifetime holiday to Uzbekistan in the autumn!

dav

I never dreamed that I would make it to Uzbekistan

I see my oncologist and trials nurse in clinic once a month. Each visit involves a full physical exam, blood tests, a pregnancy test, and an ECG. After the tests I go to the hospital pharmacy to collect my medication for the next four weeks. I usually spend around three hours in hospital, but weirdly I quite enjoy it! The staff are lovely and as a ‘frequent flyer’ I’ve got to know some of them quite well.

The cancer is currently responding to treatment but it remains incurable. One day it will work its way around the trial medication. Nobody knows when that will be. As I write this, it has been almost three months since my last scans, and the tumours may well be growing again already. I’ll keep taking my drugs and undergoing regular observations until the treatment is no longer beneficial – but then I’ll be back to square one.

Life is never the same after a cancer diagnosis. After so many months of envisaging death on the horizon it feels strange to have a reprieve. While the trial may not change the course of treatment for mucosal melanoma on its own, the results will form part of the bigger picture of the disease and help to determine researchers’ and clinicians’ next steps. For me, it’s been a lifeline – and regardless of what happens, I’m immensely grateful for this extra year.

You can explore what clinical trials for cancer are recruiting in the United Kingdom using the Cancer Research UK trials portal. Alternatively, cancer.net is a good resource for looking at trials on an international level.