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.

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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.

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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!

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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.

Living with incurable cancer: talking to my children

In this guest blog post, Shine community member Beth writes about her story of living with incurable bowel cancer, and shares her experiences of talking about her illness with her young children.


 

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Meet Beth

My name is Beth, and I was diagnosed with bowel cancer in 2016 at the age of 37. I was working as a Paralegal, and about to start the final year of my law degree. This diagnosis could not have come at a worse time, just when I was finally pursuing the career of my dreams and becoming a solicitor. However, it was not my career that came to mind, but my family: my husband and my babies.

In 2017 things went from bad to worse. I was told that the cancer had spread to my lungs and was now incurable. I was given six months to three years to live. My son Joseph was nine at the time, and my daughter Abigail was just seven. How was I going to tell them? What was I going to tell them? How much should I tell them? How much would they understand? How could I make sure I was always a part of their lives? What could I put in place for them emotionally for when I was gone?

I had a lot of questions – mostly about my kids, not medical questions for the doctors. Who to ask? I found charity leaflets about talking to children about cancer, but they were very generic; I felt that there was a lack of support for parents and children in this situation. I wanted to speak to child psychologists, parents who had been through this, adults who had lost a parent as a child – anyone who could give me insight into the best things to do for my children. in the end I found help, ideas and support from my followers on my Facebook page. I asked if anyone had lost a parent at a young age and if so, what had helped them. Then the ideas came flooding in.

When I was first told I had cancer, we told the kids that I had some bad cells and the doctors were going to take them out, meaning that I would be in hospital for a bit. After my initial operation, we explained that I would need to have some medicine to kill off any tiny bad cells that the doctors could not see and help prevent any more bad cells growing. We explained that the medicine might make me feel ill. The progression of my cancer meant that I needed to break the news that the bad cells were back, the doctors could not cure me and – the bit I still needed to get my head around – I was going to die (but we had no idea when).

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Beth and her family

I talked to Richard, my husband. We planned to sit the children down and talk as a family, but not about time frames. Unfortunately, we never did get to sit down and do this. Life has a funny way of taking these things out of your hands.

I did tell Joseph and Abigail, but it was one afternoon when I was snuggled up on the sofa watching TV with them. An advert about cancer came on and Joseph turned to me and said ‘you had cancer didn’t you, Mummy? But you don’t have it anymore.’ My heart sank. We had never used the ‘cancer’ word, but he knew. Yet that was not what got me. Yes, I was going to have to shatter their world, and it would have to be now because I could not lie to them. The conversation went something like this:

 

Me: Well, you know that medicine to try and stop it coming back?

J&A in unison: Yes, Mummy.

Me: It looks like the medicine didn’t work as well as we thought, and I do still have cancer.

A: But Mummy, cancer can kill people.

J: But the doctors will make Mummy better, Abi.

Me: Unfortunately, the doctors can’t cure me, but they are going to do whatever they can to keep me here with you for as long as possible.

A: Are you going to die, Mummy?

Me: We all die one day, but I will probably die sooner than we would like. You know that if there is anything you want to ask me, you can. We can talk about anything.

There were lots of tears and cuddles, but oddly no questions – well, not then. A few weeks later my daughter, who is very matter-of-fact, asked ‘Mummy, will you last until Christmas?’. I am still not sure if she was more concerned about her presents – the man in a red suit does not get all the credit in our house…!

Both children made us promise that we would tell them whenever we got any new information. Joseph wanted to know about scan results and treatments. They seemed reassured by being included in what was going on. Just over a year on, we still have no idea how long I have left, but we take each day as it comes, and do everything we can to make as many memories together as possible.

We talked about making memory boxes, something they would have to keep their memories of me and our lives together as fresh as possible. The children put things into their boxes that remind them of something we have done together. It could be a photo of us together, anything that means something to them. I hope these boxes will help them to connect to me through physical things they can hold, touch, see, and smell.

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Dreaming about holidays

I am also doing things that the children do not know about: for example, I have written their birthday cards all the way up to the age of 21. This was tough and I cried a lot, but it was important to me. I set up an email address for each of them and I send them emails. I include a summary of something we have done together, what I enjoyed most, and a picture or two. I bought some books that ask questions about my life, and about their lives. I am in the process of completing these books and trying to answer all the questions.

I plan on recording videos and writing letters for special occasions. My husband can give them if he feels appropriate. The most important thing, though, is to be there for them right now and make the most of the time we do have together.

I am currently on a holiday booking spree…

 

You can learn more about Beth and get in touch with her via her blog, Facebook page, or Instagram/Twitter: @bowelwarrior. 

If you would like more support about talking to children about cancer, you can…

 

Living with incurable cancer: Talking about the future when I won’t be here for it

In this post, Shine community member Christine reflects on discussing future plans while living with incurable bowel cancer.


I have incurable cancer. It seems to create a lot of awkwardness.

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Christine with her parents

 

But, life goes on. I know that when I die the world will go on without me. That’s the same for each of us, though hopefully for most people that time is a long way off.

In the grand scheme of things we are all just tiny specks who exist for such a tiny length of time. Most of us will have only a very limited impact on the wider world. If we are lucky we will have some small influence on our little circles. But really, for the vast majority, the future will be no different without me in it.

I have accepted my fate, as best I can. What I find difficult is that other people make all sorts of assumptions about how I might feel, and it ends up limiting conversation.

Sometimes when a group discussion naturally gets on to future plans, people start to look at me uncomfortably. They might even try to change the subject. It is really not necessary. I don’t mind at all.

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A photo from Christine’s recent holiday

I am not worrying about pensions, or mortgages, or planning a wedding. It doesn’t mean I don’t understand the importance of those things to other people, and I don’t mind discussing them, though obviously I might not have much to contribute. (Except on weddings – I have a lot of strong opinions there!)

Of course I am sad that I won’t have the future I thought I might. And I am sad for all the things I will miss. But that sadness is far outweighed by the joy of knowing that those things will happen. My loved ones will carry on living without me. They will be happy again. I am not suggesting it will be easy – far from it.

I don’t believe in a heaven, or that I will be watching over them. When I am gone, that’s it. Whatever made me me will cease to exist, and my body will return to the earth. I will live on in the memories of those who knew me, and I hope that they will continue to feel my love even when I am no longer here. Somehow I will always be a part of their lives.

Sometimes I forget that my days are numbered, and I have little daydreams about my future, the same as anyone else. To be honest even without the whole incurable cancer thing I doubt many of them would come to fruition. Few of us live the life we planned, which is often no bad thing.

I don’t mind talking about the future, either generally or people’s individual hopes and dreams. I don’t begrudge anyone their good health or their future. I don’t wish that everyone else was dying too, just to keep me company. So please don’t leave me out of your conversations or feel that you can’t tell me things.

I still want to be a part of your life while I can. And if that means planning for your future then I am more than happy to join in.

Anyone who knows me well will know that I am quite organised. I like my lists and plans. I’ve had to let go of a lot of that because cancer is so unpredictable. But now I have a whole new set of plans to make – for my funeral, my end of life care, my will. It could be a bit depressing, but actually I get quite a lot of comfort from it.

What I am trying to let go of is my desire to continue to control the future when I am no longer here. I worry about how my family will cope. At first I came up with all sorts of ideas of how I could guide them through. But the reality is that I just can’t. I have to accept that once I am gone, they will need to learn to live in their own way. I don’t get to be involved in that. If they decide to abandon the monthly smoke alarm tests and the house subsequently burns down then it will not be my responsibility.

I thought about leaving cards for all the milestones I will miss. But I don’t even know what those milestones will be. And when would I stop? It seems a bit selfish, to inflict myself on them even when I am dead. I don’t want to gatecrash, or to make them sad on what should be happy occasions. And really it’s only to satisfy my own ego. I am dispensable. Everyone will be just fine without me.

Life isn’t just about the big milestones anyway. It’s in the boring minutiae of the everyday. When I imagine the future I would have liked, it’s those little moments that I will miss. Not when we are all dressed up to go somewhere fancy or putting on our biggest smiles for a photo, but laughing because otherwise you’d cry, or finding something to smile about when you’ve had a really hard day. And actually I think, much as I’d love to be there to celebrate all the wonderful things that are to come, it’s the hard times that I am sadder about. It pains me to imagine my loved ones struggling and not being there to help them.

Of course, there’s not really anything I can do about it. I try to give everyone as much love as I can right now while I am still here, and that will have to be enough.

If you’d like to connect with other young adults living with cancer, please request to join our private Facebook group or follow us on Twitter (@shinecancersupp) or Instagram (@shinecancersupport). 

Shine and ASTRiiD – a new way of connecting people with cancer with flexible employers

Here at Shine, working after cancer has always been a core part of the work that we do. We’ve long been aware that our Shine community is full of talented people who are often un- or under-employed because of a cancer diagnosis or treatment. That’s why we were delighted to meet David and Steve Shutts, the brains behind a new initiative called ASTRiiD which aims to pair up people living with cancer who need flexible or part-time work, with companies that need talented people but don’t need them 9 to 6pm in an office. It’s win-win!

The ASTRiiD team have written a blog below which we’re delighted to share. Over the coming months we’ll be partnering with them as they launch ASTRiiD and begin connecting people with cancer with some great companies. If you want to know more, pop on over to their website or follow our Facebook or Twitter for updates!

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The choice of career available to most school leavers today is simply staggering compared to David Shutts’s own experience 35 years ago. For him, it was a life in the armed forces that beckoned, so he joined the Royal Navy aged 20 and became a Marine Engineer Officer where he served on a dozen different ships and travelled large parts of the world.

Aged 45, he thought it was time for a second career, this time in industry, and he was enjoying his professional life. Then suddenly, he was diagnosed with stage four kidney cancer. Incurable and inoperable, this diagnosis set the course for what will be David’s newest stage of life. Now, two years after his diagnosis, David is pioneering a project that will transform the lives of thousands of fellow cancer patients across the UK.

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ASTRiiD Co-founder, David Shutts

“There is only one way to approach this situation” David suggests, “and that is to make the most of every day available. It’s a bum deal but that’s what it is. Accept it and get on with making the most of what’s left.”

And this is why David has founded a project he calls ASTRiiD.

ASTRiiD aims to connect people who have long-term illnesses, but who also have plenty of skills and experience, with businesses that need an injection of talent and expertise.

“Holding down a permanent job can be a massive challenge for people with cancer and other serious health problems,” said David. “Yet many people still want – and need – to work. And don’t think, just because you’re young, that you don’t have what’s needed. I can assure you that there are many businesses out there where the ability to learn counts just as much as any formal qualification.”

ASTRiiD, which stands for Available Skills for Training, Refreshing, Improvement, Innovation and Development, is underpinned by technology from the IT partner, Salesforce. “ASTRIID epitomises modern commerce; there are no long winded application forms – we are doing everything on line through our website and are proud to be working alongside a leader in this field”.

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ASTRiiD logo

As well as providing heavily discounted licences to run the website, Salesforce (which is also supporting Shine) has pulled together a pro bono team to help David deliver the project.

“I call the members of this community the ‘Invisible Talent Pool’ as currently they are invisible to business and business is invisible to them. Through ASTRiiD I want to make the invisible visible.”

“By helping people find meaningful work, we hope to be able to boost an individual’s self-esteem and self-confidence.”

The demand side of ASTRiiD is provided by the UK skills gap, the term given to address how companies struggle to find the right people with the skills, experience and attitude they need to grow their business.

“There is a vast demand for skills out there. Our business landscape is dominated by micro-, small – and medium-sized businesses, all of whom at some point will need help to let them grow and prosper.”

“I speak from experience,” says David, “without question my health has deteriorated over the last two and half years since my diagnosis in May 2015.  But working on ASTRiiD and keeping busy has helped m maintain my mojo and my feeling of self worth and I know I’m in a much better place as a result of having meaningful work than I would have been if I’d had nothing to keep my mind and body active.”

“The beauty of ASTRiiD is that with the right connections we are supporting individual members, UK business and making sure that we stop ignoring a huge community of talented people.”

“That’s got to be the right course to steer.” says David.

Please take a look at ASTRiiD’s website for more information. You’ll be able to register and summarise your talent and experience and, importantly, let employers know just how much work you can manage). ASTRiiD’s matching process will then look to find those roles that you are best suited to, always keeping you in control of the communication so that you are only made ‘visible’ when you are ready.

For more information about work and cancer, make sure to read Shine’s previous blogs and watch our videos with Working after Cancer