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.

Coaching and cancer: Karen’s story

Karen Myers is a blogger, baker, knitter, traveller, theatre-goer and escape room addict. She was diagnosed with invasive breast cancer in July 2018 and has blogged about her experience at atozeeofbc.com. In this guest blog post, she writes about her experience of Shine’s coaching programme.


A cancer diagnosis tends to throw a spanner into the works of your life. The various cogs of your relationships, your career, your health, your lifestyle, your hobbies, and your free time are all whirring away quite happily until a doctor says ‘you’ve got cancer’. Then everything comes to a grinding halt. Through no choice of their own, many people with cancer have to put large parts of their life on hold as they go through treatment. But when that active treatment is over it can be hard work to get the engine of ‘normal’ life started again. The physical and psychological drain on your energy and enthusiasm can leave you feeling directionless. I certainly felt that way – my cancer diagnosis came after a difficult redundancy from a job I had loved, and when a year of treatment and surgery came to an end I had no clue what my next step in life should be. I felt totally lost.

IMG_7241

Blog post author Karen Myers

That’s when Shine’s coaching programme appeared on my radar. I took the leap of applying in the hope that it would give me some guidance, some direction and maybe a little oil to get my engines running again. I had no real understanding of coaching but I learned quickly that the Shine coaching programme is flexible and open. The programme can help you focus on whatever you need: whether that’s your career, your relationships, your work/life balance, your search for better health, or your financial or personal wellbeing. Maybe post-cancer you wants to find a new direction, personally or professionally, or maybe you want help to rebuild normality after cancer has crashed through your life. Under Shine’s coaching programme, the end goal is entirely down to you. And if you’re not even sure what that end goal might be, that’s OK too. 

Now in its fourth year, the Shine Coaching programme starts with a fun, informative workshop where those being coached can meet and start devising the goals that will become the focus of their coaching sessions. These goals can be specific and detailed (‘I want to become an astronaut’) or, as in my case, woolly and vague (‘help, I need to change my life’). The goals can shift and change throughout the process, but initially they’re used to match you to the most appropriate person in Shine’s stable of experienced, skilled (and quite frankly, lovely) coaches. The opening workshop is also a crash course in what coaching should be: non-judgemental, flexible, open, and safe, and focused on exploration rather than sticking to a rigid, expected path. 

After the workshop you receive three full coaching sessions via Skype. What happens in those sessions is entirely up to you. What I found most surprising (and initially terrifying) about coaching is the freedom you have to plough your own furrow. Your coach isn’t there to steer you down particular routes or give ‘you must do this’-style advice, but rather to act as a sounding board. An experienced, skilled coach, like those on the Shine programme, know that their role is to ask you the right questions so that you can guide yourself towards your goals. Sometimes those questions can be challenging, asking you to peel back some of the layers of your self-perception. But your answers are heard with compassion and understanding and, surprisingly, it can be refreshing to be confronted with your own fears and self-conceits in such a safe environment. However, coaching is not therapy or counselling. Although my sessions occasionally became emotional, the focus was always on a positive way forward, on ways to reach the future ‘me’ I was trying to find. 

My coaching sessions were focussed on what work after cancer would look like for me. Having been in the same industry for nearly 20 years, the shock of a cancer diagnosis had me in a panic. I wondered whether I needed to become someone entirely different now. I really felt the pressure of all those ‘I had cancer and I started my own multi-million pound business/ran 20 marathons/climbed all the mountains’ stories. My coach’s steady, guiding (never leading) hand made me realise that I’m not ready to make a big leap just yet. I need some stability and security after an earth-shattering trauma to my life. And my coach led me to realise that that is OK. Coaching doesn’t have to lead to major changes. It can help you reclaim and reframe normal, if that’s what you want. 

Even Shine’s stellar coaching programme might not give you the ultimate answer to life, the universe and everything (that’s 42!), but it might just help you find the right questions to ask. 

What the doctor learned

Dr Charlotte Squires was diagnosed with advanced Hodgkin lymphoma in November 2018 when she was 30. In this guest blog post, she writes about how her diagnosis and treatment has changed the way that she approaches her career as a doctor.


Lymphoma is known for being tricky to diagnose: it can present in strange ways, or with signs that may not seem that concerning to people without medical knowledge.

As a doctor, it was surprisingly easy to work out what was going on. My partner and I were living and working in New Zealand on a year out between stages of my UK medical training when I realised that I was losing weight. Initially I was pleased, as many of us would be, and I put it down to healthier eating. But then the weight kept coming off, the night sweats began, and it started sounding less like a reason to buy new skinny jeans, and more like a cancer diagnosis waiting to happen. I wrote a list of what I thought could be wrong – each illness more worrying than the next – and took it, terrified, to my own GP. He thought I was just anxious but he took some blood tests anyway, expecting to be reassured. The next day I was on call at the hospital, seeing acutely unwell patients in the emergency department, when my GP phoned. My results were more abnormal than those of the patients that I had spent the morning admitting, and they were highly suggestive of cancer. Over the next week I had a CT, then a biopsy, and then confirmation of advanced lymphoma – the illness that had been at the top of my worrying list. packed up our things in three days and flew home. I found myself tipped from the end of the hospital bed, headfirst into it.

IMG_2611

Charlotte during treatment for Hodgkin lymphoma

Becoming a doctor involves a lot of learning. Medical professionals spend long years memorising anatomical diagrams, the routes of nerves and blood vessels, the causes of different symptoms, and what different organs look like under a microscope. We spend hours speaking to patients, trying to understand what it means to have an illness and to undergo treatment. We learn about drug doses, side effects, and the likelihood of successful treatment. We learn how to break bad news, and how to explain complex diseases.

And yet, there was so much I didn’t know.

I didn’t know what it means to have a mouth so sore that you can’t bear to drink. I didn’t know how it feels to lose all of your hair on your birthday, or how hard it is to know that it will take several years to grow back fully. I didn’t know the paralysing misery of severe nausea, or the gripping pain from bone marrow-boosting injections, or what it’s like to nearly faint in the middle of the Aldi Christmas aisle due to severe anaemia. I didn’t know how it feels to face down your mortality, or to lose friends, young and beautiful, to terrible illnesses similar to your own. I didn’t know what it was like to feel afraid, and so vulnerable that it’s as though your skin has been flayed from your bones. I didn’t know just how often the health service gets it wrong, or sends things astray, or just forgets, and how sometimes it doesn’t really seem to care. I didn’t know what it means to feel unable to trust your own body. I didn’t know how much bravery it takes, every day, to live with and through a cancer diagnosis. There is much I’ve had to learn.

I’ve learned what it means to wait, like Schrodinger’s patient, both relapsed and in remission at the same time, until the scan result arrives. I’ve learned how to sit anxiously, in quiet waiting rooms, afraid of what might happen on the other side of a closed door and wondering whether I’ll be able to find the words to tell my family if it’s yet more bad news. I’ve learned to try to sit with this, to own it, and to keep living whilst I wait.

I’ve learned what it means to be unable to plan ahead, or to have multiple caveats around treatment timelines, scan results, and the major impact of fatigue. I’ve learned what it means to cancel an anniversary dinner at the last minute after vomiting spectacularly in a restaurant car park, and how it feels to be the awkward one with special requirements, who needs others to be flexible, and who can no longer work those long hours without a second thought.

IMG_0116

Our blog author Charlotte

Now, eight months later, after four cycles of chemotherapy and more tablets and injections than I care to remember, I am back at work, on the easiest end of the stethoscope. My hair is slowly growing back, and I am beginning to feel more normal. But it is a slow process, full of peaks and troughs and unexpected detours. As a patient, I was often frustrated. As a doctor, I try to look for those frustrations and acknowledge them, even if I can’t always fix them. One of the biggest things I often think about is how as a doctor, I see my patients for 20 minutes in clinic and often have little knowledge of their lives beyond the hospital walls – and of what it means to have your life suddenly turned upside down. These days I try to ask, to listen to the stories, and to say, honestly, that managing illness takes more effort than treating it. As doctors, we’ve learned a lot to get to where we are, but there is still so much that we don’t know.

Writing through cancer: using writing as therapy (and a way to help others)

In this guest blog, Sara explains how writing helped her cope with cancer – and provides some tips on how you can get started writing too!


In three months, my book is being launched. In fact, people can actually pre-order it on Amazon now. I keep having a sneaky peak to check it’s still there. It is. There’s a picture of the cover (a photo of my feet in fluffy white socks) with my name in big capital letters. Which is really weird. Weird in so many ways. Had someone told me three years ago that I’d be a published author I would have laughed (very loudly) in their face. You see, I’m not what I would call a ‘writer’. I’m not one of those people who’s lived with an unwritten novel sitting inside them and I’ve never really had any aspirations to write poetry, short stories or even magazine articles. I’ve never studied creative writing and my day job only involves the legal kind of writing. But then something horrible happened to me. I had cancer. I started to write about it. And I haven’t really stopped.

me

Guest writer Sara started writing after she was diagnosed with cancer.

I didn’t sit down one day and just write it all out. I jotted things down over the course of treatment: I described my emotions and how I was feeling; I recorded my side effects at length; I wrote long gratitude lists; I wrote about my anger, resentment and fear; I recorded the way in which treatment was given to me; I made lengthy, detailed to-do lists; I ranted about people who upset me with their thoughtlessness; I made lots of exciting life-after-cancer lists; I wrote about my hopes and dreams; and I recorded my day to day observations and general musings about life, death and everything in between. And all this writing made me feel so much better.

Then, towards the end of my treatment before I went back to work, I took all these notes and I set up a website, wrote a book and starting writing articles for cancer charities and organisations. I realised that whilst the writing was helping me, it might also help other people who were going through similar things.

If you’re going through cancer treatment, or you’ve finished treatment and you’re trying to put your life back together, why not consider writing about your experience?

  1. Remember that you are writing for whatever reason that you choose. So, if you don’t want anyone to read it then they don’t have to – you can keep your writing private. Nobody needs to ever read it; you could even ceremoniously destroy it in a defiant move against cancer.
  2. Everyone can write about their experience. You don’t need to be a writer. You just need a pen and paper, or a laptop, or a phone. You don’t need to be perfect at grammar and spelling. Just remember to write what is important to you, write from the heart and be honest.
  3. Use your writing to stay in control. Going to hospital for consultant appointments, oncologist appointments, scans, blood tests, clinical trial appointments, counsellor sessions, and everything else can be so overwhelming. Sometimes it can be helpful to take notes at these appointments and then rewrite the details into a dedicated notebook/computer folder so that everything flows from one appointment to the next and you can keep on top of what is going on, rather than feeling completely out of control.
  4. Try keeping a gratitude journal. Having cancer can feel so unfair and cause all sorts of negative emotions to build up inside you. Sometimes it might help to remember things for which you are grateful. And on the bad days, re-reading this ongoing list might help to lift you out of your slump.
  5. Don’t be afraid you write down your feelings and emotions, your fears and worries. If you write them out, then they’re out of your head and you can let them go. It might even help lift the weight of anxiety off your chest a little.
  6. What to write? If you like the idea of writing about your experience but you don’t know where to start, here are a few prompts to get you going:
  • How did you feel to be diagnosed with cancer at such a young age?
  • How did it feel to tell your parents, siblings, children that you had cancer?
  • How have friends treated you since you told them about your diagnosis?
  • If you’ve lost your hair, how did you feel about it?

    7f5a3958-1ece-4ea2-b18b-38215912435e

    Sara, during treatment.

  • What has having cancer made you realise, that perhaps you didn’t before?
  • Have any positive things come out of having cancer?
  • How have the side effects affected you?

7. Use your writing to express your feelings towards others. Anyone going through cancer knows that unfortunately not all your friends step up and rally around. This is incredibly hurtful and can knock your confidence to an even lower level. This is not what you need when you have bigger things to worry about. It can eat away at the back of your mind with thoughts like, “Why hasn’t she got in touch?” “Why am I not invited out with my friends anymore?” “What’s wrong with me?” It might help to write a letter to these friends telling them how you feel and why you’re upset with them. Don’t send the letter, just burn it or rip it to shreds and move on.

8. Don’t forget to write about the good as well as the bad. For example, it’s nice to write about all the lovely things that people do for you (like bringing you food or driving you to appointments) and it’s nice to read these back to remember how important you are to these people.

9. Consider whether you’d like to share your writing with others. Maybe you’d like to set up a blog (which is fairly straightforward using one of the DIY blog platforms like WordPress) or a Facebook page. With both these types of blogs you can share your writing with either just your friends and family, or open it up to anyone. If you don’t want to set up something yourself, get in touch with one of the cancer charities or cancer organisations about sharing your writing as a guest blog on their website (I’m always happy to post guest blogs about breast cancer for my website, tickingoffbreastcancer.com and, of course, you can always get in touch with Shine!).

10. Don’t be shy about sharing your writing with others. It can be a bit daunting to start with, but at the end of the day people going through cancer want to read about the experiences of others who’ve been through the same thing. They’re looking for reassurance, support, honesty and advice so if you can provide these, they’ll want to read what you write. And remember these words of encouragement from me:

You have something to say, so you should say it.

Even if it just helps one person, you are making a difference.

You have a voice, use it.

People will appreciate the advice of someone who has been through it.


Sara is the author of Ticking Off Breast Cancer, a book about juggling a busy life with treatment for primary breast cancer. This book follows the physical and emotional impact of breast cancer on Sara’s life, and provides practical help by way of checklists at the end of each chapter. The book is out 26 September 2019 but you can pre-order the book now from Hashtag Press, Amazon, Waterstones and Foyles. Sara is also the founder of www.tickingoffbreastcancer.com, a website dedicated to supporting those who don’t know which way to turn for help after receiving a breast cancer diagnosis; those who are overwhelmed by the breast cancer resources online and those just looking for a comfortable, safe, calm place to turn for help. Follow her on Facebook, Twitter and Instagram.

My post-cancer PTSD time-bomb

In this guest blog post, Shine community member Jen shares her experiences of post-traumatic stress disorder (PTSD) after breast cancer, and how these feelings affect her upcoming brain surgery for an unrelated condition.


E-ver:20180127.4571296.001.002

Meet Jen!

It seems that having cancer – and more specifically, months of treatment to be rid of that cancer – leaves you with a ticking PTSD time-bomb for future serious medical issues. No shit Sherlock, I hear you scream! I know – it seems obvious, doesn’t it? PTSD is just another one of the many, many things that nobody prepares you for when you walk through that hospital door after cancer treatment, merrily waving your goodbyes and looking forward to returning to your life. I had cancer at 36 and, touch wood, I am all clear so far. Given this diagnosis, it would seem pretty feasible that I might come up against another serious medical issue at some point. Why would nobody think to address the trauma of cancer? Mental health is yet another thing that sadly falls by the wayside for younger adults with cancer.

I’m sure that my experience of PTSD will resonate with others – and I hadn’t really dealt with, acknowledged, or understood the trauma until very recently. It makes perfect sense that what happens to us after cancer is going to be influenced by our experiences of diagnosis and treatment, just as all our other life experiences shape us and influence how we react and respond to future events.

I’ve learned that the actual ‘trauma’ of post-traumatic stress might be something that was not initially perceived as trauma. Trauma can be something that creeps up on you over time: it grows with you, in you and through you, slowly and steadily like a fungus. When you get diagnosed with cancer, there’s no time to deal with your feelings about it. Instead, you batten down the hatches and get on with getting through whatever you have to get through. There is a lot of information to take on board, but pretty much everything is out of your control. You are swept along on a rollercoaster ride from hell and when it ends, you are just thankful that you are still standing –  regardless of the state you are in, and the trauma that may have occurred along the way. You process your emotions in the months and years afterwards, and the trauma creeps up on you unexpectedly.

I have known for years that eventually I will need surgery on a slow-growing, benign brain tumour. It’s in a very awkward place. I have a condition called Schwannomatosis. It was diagnosed after cancer, so it seems that I am doubly special and unique! I have yearly scans and appointments with a specialist team of neurologists, and then I shelve it away for another twelve months and get on with living my best life. I’m pretty good at that! I genuinely don’t dwell on it. I had thought that this pattern would go on for many years to come so, other than the annual drama of getting a cannula into my chemo-destroyed veins (and a small amount of pain from time to time), I could almost live in happy denial. Unfortunately, in September 2018 this all changed: the little bugger had grown significantly in the past two years and if it continued, my eyesight would quickly become compromised. This means that I now need fairly complex and somewhat risky neurosurgery.

I am great at going to appointments and discussing all the details, from options to risks. But as I get closer to the operation, I’m not entirely sure how I am going to be able to let it happen to me! I know I have to, right? I know I do. It has to be done. It’s been planned and discussed, and I’ve been waiting for months. But the thought of having my body cut into again, damaged and broken, and drugs being pumped into my fragile veins? It just makes me feel nauseous, and that feeling triggers vivid memories!

It has been five years this month since my breast cancer surgery. Beforehand I had had four months of chemotherapy, and post-surgery I had five weeks of radiotherapy. My body has healed and my hair has regrown (sadly not my eyebrows, but I do have rather fabulous tattooed ones now!). I still ache though. I have radiotherapy damage in the bones and muscle on my chest wall, and I’m reminded of this when my kids hug me a little too tight. I have permanently painful toenails – first because they fell off during chemo, then from walking around the Isle of Wight (stupid me), and then from walking up Kilimanjaro (double stupid me!). I bruise easily, and my joints ache due to the drugs I take to keep the cancer from returning.

IMG-20180823-WA0058

Jen and her family

My youngest daughter has to hold my left hand rather than my right as she tends to tug and it hurts the back of my hand. My hand has never had a chance to recover from the onslaught of cannulas. I mention these things not as a sob story, but to explain that my instinct is to be very protective of myself.

I hate it when I hurt. I hate getting badly bruised if I clumsily walk into something. It makes me mad: disproportionally mad or disproportionally upset, depending on the situation. The thought of rocking up to a hospital voluntarily to check myself in for a lengthy, complex surgical procedure is obviously horrific – with or without the prior experience of cancer. Alongside these feelings comes an overwhelming, intrinsic, sense of self-preservation. I just don’t want my body to suffer anything more – it’s bounced back from so much, and I’m so thankful. This time it feels like I am choosing to do this to my body, and it will never forgive me!

Along with all these thoughts comes cancer guilt: the guilt that comes with survival when those with the same cancer and prognosis as you have gone. The guilt of remaining cancer free while friends get secondary diagnoses. The guilt of forgetting to be grateful every single day because there are people hoping for just one more day of life. The guilt of being stressed about one single surgery when there are people going through far worse in a desperate attempt to simply survive.

I have to have surgery. It sucks, but at least it isn’t cancer this time.

If you’ve enjoyed this blog, we’d love to connect with you! If you’re in your 20s, 30s or 40s and have had a cancer diagnosis, why not join our private Facebook group

Wellbeing and wildlife: how nature helps me feel better

In this guest blog post, Shine member Hazel writes about how getting outside helped her to cope with treatment for cervical cancer.


It was 2pm. I’d gotten out of bed at around midday, but I hadn’t bothered to get dressed yet or even brush my teeth. The cloudless blue sky and warming sunlight beckoned me to leave the house, but they were hidden behind my tightly shut window blinds. I sighed, disappointed in myself for not making the most of the glorious weather, and wrote it off as ‘one of those days’.

As the daylight faded I told myself tomorrow would be different. I set my alarm, laid out my clothes and put my binoculars and camera into my backpack. Tomorrow I would go out for a walk.

Chemo

Hazel on the chemo ward

After being diagnosed with cervical cancer in November I underwent four rounds of chemotherapy, twenty-five fractions of pelvic radiotherapy and three doses of brachytherapy (internal radiotherapy). After finishing treatment in January the reality of the whole experience sunk in and early-onset menopause began. Anxiety, hot flushes and night sweats, coupled with aches in my pelvis, often make it challenging to get a good night’s sleep. These conditions give me go-to excuses for not leaving the house, especially on gloomy, cold days, despite knowing that getting out of the house makes me feel so much happier. Listening to birdsong, looking for wildflowers and immersing myself in nature are the things that help me forget about cancer and just enjoy being alive.

The next morning, true to my intentions, I headed out to one of my favourite local nature reserves. It was a beautiful day again. I had another chance to get out and feel better. I walked under a canopy of huge beech trees with their smooth grey trunks flanked by stocky holly trees, listening out for birdsong as I went. Among the various tweets and chirps cascading around the woodland my attention was caught by a series of loud, high pitched ‘pip-pip’ calls. Over the past few years I’ve made an effort to learn the songs and calls of birds (you don’t need to know which bird is singing to appreciate the wonderful sound though, of course!). I recognised the ‘pips’ as being the call of a nuthatch: a beautiful little bird with blue-grey feathers on their backs, pale peach plumage on their bellies and a striking black stripe running across their eye. I looked up into the trees, scanning the branches in the direction of the sound. I soon spotted not one but two nuthatches, a male and a female, using their beaks to prise bark off a silver birch tree in which they were busily hopping from branch to branch. I stood perfectly still, trying not to disturb them.

I get so much joy from watching wild animals going about their daily lives, gaining insight into their behaviour. There’s no space for anxiety about the recurrence of cancer or worrying about the future in those moments because my full concentration is given to the bird, butterfly or other natural wonder that I am in the presence of. After a few minutes one of the nuthatches flew over to a tree, clinging to the bark with its powerfully clawed little feet. It cautiously paused to look at me before it began stuffing the bark it had collected into an old woodpecker-made hole in the tree’s trunk. They were building a nest! I’d passed that hole-laden tree many times and wondered what creatures might make use of it; now I was witnessing something I had never seen before and it felt like such a privilege. It brought a smile to my face which lasted the rest of that day, and returns now as I recall the details of the encounter to write about it. This is the kind of moment I need to remind myself of when I am struggling for the motivation to get out of bed!

More recently, after the familiar difficulty of getting an appointment at my GP surgery, a sympathetic doctor prescribed me an HRT drug. I could have hugged him, I was so overjoyed at the thought of getting some undisturbed, hot-flush-free sleep. Unfortunately, upon consulting every pharmacist in the locality, I found the drug was unavailable with no timescale for when it might be back on the shelves. In my despair I sat and cried in my car.

I knew I didn’t want to be out walking on reserves looking and feeling as I did, so I sought solace among the plants and wildlife at home in the garden. Gazing into the pond I watched smooth newts: males with their striking, spotted breeding season colouration, and sand-coloured females. Their tails quivered, propelling them to the surface. They paused, suspended just long enough to take a gulp of air before descending back to the bottom of the pond, leaving a trail of tiny bubbles. There were also dragonfly nymphs, formidable predators in this tiny underwater world, sitting motionless and deadly. Some of our largest dragonflies spend up to four years in this form before crawling up the stems of plants and emerging as the beautiful adult winged insects (which live for a maximum of only seven months). With very little effort, my sadness and frustration had diminished, replaced by the childlike wonderment of watching newts and dragonfly nymphs.

At sea

Hazel working at sea as a wildlife guide in 2017,
specialising in whales, dolphins, porpoises and seabirds

Of course we are all entitled to days when we just don’t feel like going out, getting dressed or getting out of bed, and there is no shame in that. Our bodies need rest and time to heal. Comfy clothes, chocolate and binge-watching your favourite TV series can be hugely therapeutic! For me though, there’s nothing like getting outside, even if just for half an hour, to seek out wildlife encounters and marvel at nature. In those magical moments my cancer might as well not exist; I don’t give it a thought because I am consumed in marvelling at the beauty of the natural world – and I feel so much better for it.

 

Meet Neil: Shine’s newest employee!

We’re growing again! Meet Neil, our new Shine Network Support Officer. In this post, Neil shares his experience of having a malignant brain tumour and talks about how his life post-diagnosis led him to working for Shine. 


IMG_0763

Good times!

Hi everyone! My name’s Neil and I’m Shine’s new Network Support Officer. I am originally from Scotland but these days I live in North London. Previously I worked for a mental health charity which focused on social inclusion and co-working with volunteers, and I have been a member of Shine for a few years now. It brings me so much joy that I am now able to join Shine in supporting young adults after a cancer diagnosis.

I first discovered Shine while I was awaiting an oncology appointment at the Royal Marsden Hospital. In November 2016, when I was just 26 years old, I was diagnosed with a medulloblastoma, which is a cancerous brain tumour. I was working as a bar manager but was told by doctors that due to my dizziness, partial deafness and fatigue, I wouldn’t be able to do this anymore. It was a real shock to me that I wasn’t this invincible person that I’d always thought I was! I had surgery, followed by radiotherapy, and then a difficult recovery. During this time I suffered with some mental health issues. I moved back to Scotland after my diagnosis and my family and friends did such a wonderful job supporting me. While at home I attended counselling through Maggie’s which helped me to begin to understand all the trauma that had come from having cancer. When I moved back to London I started CBT therapy. This was awesome and I believe it really changed my life. I hadn’t realised that I had quite a negative voice inside my head, and being kind to myself continues to be such an integral part to my mental well-being.

IMG_0765

The scar from my operation for medulloblastoma

I was unemployed and having an awful time with my benefits, so I really wanted to get back to work as soon as I was ready. I went to my first Shine meet-up after days cooped up at home, and I thought they must have found me annoying as I had so much energy! To my delight I was completely wrong and I really enjoyed being around people who just ‘got it’. Some people in my life  didn’t care about me as much as I had thought they did, and I found myself in a really lonely place. The meet-ups helped with this, but since my treatment I had been quite shy about meeting new people and without working, I struggled to understand my place in society. I saw a post in Shine’s private Facebook group that invited men to apply for the Great Escape, a weekend in Bournemouth for 22 young adults affected by cancer. I applied and was accepted. It was life-changing for me (totally amazing!), and really made me want to focus on moving forward with my life. I met some lifelong friends and would highly recommend anyone who is interested to apply.

At my next Shine meet-up Clare, one of the London Network Leaders, recommended that I try some volunteering in my ongoing search for employment. I felt totally lost as I didn’t have a clue what I could do with no exam results (I was a naughty wee boy!), but I managed to start volunteering at a youth homeless shelter. I loved this. Many of the residents had mental health issues and I realised I had a keen interest in supporting this. I also recognised myself in some of them. After this I began volunteering for a charity that supports people with mental health issues. After two months I applied for a job at the charity and I was successful. I broke down in tears when they called me – and then I phoned my parents afterwards and sobbed away again! It felt like such a difficult road but I had got there, and my kind voice in my head gave me lots of compliments!

 

IMG_0762

My family have been very supportive of me

Since my treatment I had struggled with a loss of confidence, which was especially noticeable when dating! Complimenting someone when on a date was just beyond me, and I would get quite upset afterwards if I didn’t think that the date had gone well. Clare and Jess (another Shine London Network Leader) host a dating session at Shine Connect, which is Shine’s annual conference and the only one in the UK supporting young cancer patients in their 20s, 30s and 40s. I picked up some tips from them which really helped me to just treat each date as ‘practice’ and not get myself so hyped up beforehand. My best mate also kept on at me to ‘get the old Neil back!’. These days my confidence is much better.

After eight months in my charity role, I noticed that Shine was hiring for a Network Support Officer. I realised that the experience that I had in my current position, and the skills I’d picked up in previous management roles, made me a very suitable candidate – so I applied. Learning that my interview had been successful was another life-defining moment for me. And that really just brings us to now!

I am really passionate about helping people and I believe that that is my purpose on this world. If I could’ve spoken to myself during my bad times, I would’ve told myself to keep going. Don’t beat yourself up, and things will get better. Be patient and just take everything one day at a time. Make sure you are kind to yourself!

Thanks for taking the time to read this, and I hope to see you at an event soon!