Dancing through cancer: how a new project is helping women with cancer

In a special guest post Emily Jenkins, founder of Move Dance Feel, introduces her project and writes about the work she does to support women living with cancer.


I love to dance. Be it in my kitchen, on the train platform, or (more appropriately) at a festival, I like to move. Why? Because it brings release, it’s revitalising, and it eases tensions in my mind and body. Dancing helps me to breathe better, sleep better, and feel more alive.

750_4029-LOWRES

Emily Jenkins

We are all capable of dancing, despite the self-conscious mind telling us otherwise. Far too often people concern themselves with the aesthetics of dance: how it looks, rather than how it feels.

I work with different  groups in community and arts contexts, and in recent years have specialised in an area known as Dance and Health. Using dance in health contexts is not a new phenomenon, though due to greater recognition of its benefits and connection to wellbeing it is rapidly growing in popularity.

My job is to break down preconceived ideas of what dance is, and inspire people to move in a way that feels good for them. I use creative techniques that encourage a greater understanding of and appreciation for the body, focusing on self-expression. Through shared, positive experiences, dance can promote social cohesion and help to build meaningful relationships based on trust and understanding.

Dance is a multifaceted art form which very much accommodates the multidimensional needs of people. In contrast to Western medicine, which often compartmentalises illness, dancing addresses the whole body, which in turn acknowledges the whole being – physically, mentally, and emotionally. This can have transformative effects on participants, as they get to know a part of themselves perhaps previously overlooked.

In 2016 I launched a project in East London, Move Dance Feel, providing free weekly dance and movement sessions for women affected by cancer. I established the project to explore what dance could offer in the context of cancer recovery, and to address a recognised need for post-treatment support.

My first personal encounter with cancer was in my teens, as I witnessed my grandfather wrestle with the devastating effects of melanoma. I recall visiting him shortly before he died and being very affected by how much the disease had taken him over. The image of his emaciated frame had a profound impact on me. Over time, as I supported friends living with cancer, I particularly noticed the overwhelming effects on the body, and also the mind.

MoveDanceFeel_3600-LOWRES

Move Dance Feel session

A motivation for setting up Move Dance Feel was learning that 70% of people affected by cancer report negative physical, emotional, and mental side effects between 1 and 10 years after treatment – a statistic that I found very hard to digest. At the same time, I read that physical activity proved effective in reducing the negative side effects of cancer treatment, as well as reducing the risk of reoccurrence, so I was puzzled as to why dance wasn’t being offered.

Originating at a community centre in Bromley-By-Bow with a Macmillan Social Prescribing Service, Move Dance Feel is now running in three cancer support organisations across London, providing sessions at Maggie’s Barts and Paul’s Cancer Support Centre as well. The project is for adult women (18+) with any type of cancer, including those who are supporting someone with cancer. We welcome people at different stages in their journey (pre, during and post treatment) and no prior dance experience is necessary. Participants are also welcome to bring along a female friend.

At the heart of Move Dance Feel is artistic practice, where women come together to dance instead of talk about their cancer. They meet each week to be active, creative and, most importantly, to laugh and have fun.

My favourite aspect of the project is meeting other women. As a communicative art form, dance provides insight into people’s characters and enables intimate moments of exchange. More often than not, these moments are energised and playful, but they can also be nurturing and grounding in times of instability. The nature of this exchange helps to experience a sense of belonging and can lead to feelings of self-discovery, learning from others how to help ourselves.

MoveDanceFeel_1143-LOWRES

Dancing at Move Dance Feel

My aim is to integrate dance as a permanent offer within cancer care programmes, and further evidence of its need within the public health sector. I am also in the process of setting up a performance element of Move Dance Feel to bring a sense of visibility to women who are living well during and after cancer – in the hope of inspiring others to dance (even if it’s alone in your kitchen!).


Emily will be running a taster session at our Shine Connect 2019 conference (11th May 2019). To register your interest in the conference and be notified when registration opens, click here!

If you’d like to know more about Move Dance Feel, or let others know it’s available for them, please follow Emily on Facebook or Twitter.

You can also find Emily at www.emily-jenkins.com.

Photos taken by Camilla Greenwell, www.camillagreenwellphotography.com. 

Can you support our #Give4Shine campaign on Giving Tuesday?

At Shine Cancer Support, we run 13 networks across the UK to support young adults with cancer. These Networks are the core of our support and always have been; they provide a unique way for young adults with cancer to meet others who have had similar experiences. This year, on Giving Tuesday, we’re asking for your help to raise £3,000 to keep these Networks going.

There are many ways that you can support our #Give4Shine campaign. Read on to get involved and help us to reach more young adults with cancer than ever before! ______________________________________________________________

If Shine is about one thing, it’s about community.  

We started Shine 10 years ago because we felt isolated and alone as young adults with cancer, and we wanted to change that. We began as a small group meeting together for coffee in Dorset. In 2012, we started our Shine London Network, bringing together capital-based young adults for meet ups and drinks, and we quickly spread to the Midlands, Newcastle, Cardiff and beyond!

IMG_0014

Ceinwen & Emma, Shine’s founders

While we’ve grown a lot, and developed new ways of supporting young adults with cancer (do check out our website for details of upcoming events!), the one thing that has stayed the same is our belief in the power of being surrounded by people who just get it – other young adults who know what it’s like to be the youngest person in the waiting room, who wonder how they’ll ever find the energy to get back to work, and who live with the uncertainty that a life-threatening illness brings to every part of life.

More than anything, we’re proud that we’ve been able to bring people from across the UK together to share their experiences, chat, and – very importantly – laugh.  Run by our volunteers (all of whom have had cancer themselves), we know that our Shine Networks make a huge difference: 97% of people who have attended a Shine event in 2018 say it’s made them feel more supported and less isolated as a young adult with cancer.

The best thing about Shine_ Knowing that I_m not alone, and that there are people my age who understand the way I feel. – JB, Shine member

This Giving Tuesday, we’re trying to raise £3,000 enough money to support our Shine Network meet-ups for a year. It’s the biggest one-day goal that we’ve ever set and there are a bunch of different ways you can help us!

  • Donate: Every little bit really does help and you don’t need to donate hundreds to make a difference!  If you’re able to support us with a donation, £10 would be very, very appreciated – simply text “TUES10 £10” to 70070.
  • Blog: Can you write a blog post to highlight how your peers with cancer – your cancer crew, if you will – help you? If you’ve been to a Shine meet-up, you could write about how our local Shine Network events help, what you’ve enjoyed about them and why you’d recommend them to others. Or anything else that shows the value of being with people who understand! We’re asking each blogger to inspire 10 readers to donate £10 – a total of £100, enough to support the activities of five of our local Shine Networks for one month. Get in touch at hi@shinecancersupport.org or via our website and we can send you further details.
  • Share: We’re asking as many people as possible to share on social media how Shine Networks support young adults with cancer. You can aim simply to raise awareness (which we need!) or your posts can also be aimed at inspiring your friends and family to donate £10 towards our goal.

    IMG_8402 (1)

    Shine members on a 2018 Great Escape weekend

Download our images below (just right click and “save as”) and you can share them with your own comment about how Shine has helped you or why you’re supporting us.

And whatever you do, don’t forget to use the hashtag #GIVE4Shine!

Thank you!!

 

Save & share these images (or your own!):

If you’d rather make a direct donation, you can do so here

Meet Rosie – social work student and latest member of the Shine team!

Rosie is a university student studying social work in Bournemouth. We’re extremely lucky to have her on placement with us until January 2019. Below Rosie tells us a bit about herself, how she found out about Shine, and what social work can mean to those living with cancer.


Hi everyone, I’m Rosie! I’m 33, and in June 2016 I was diagnosed with breast cancer for which I now receive ongoing maintenance treatment because they think it has spread to my spine. At the time of writing though, I currently have no evidence of disease!

social work and cancer

Rosie

When I was diagnosed, I had just finished my first year at Bournemouth University studying social work. I took two years out and had pretty much written myself off, let alone the thought of getting back to uni! Fast forward to 29 June of this year and it was the first day of my second year of university, and I was on placement with Shine!

I’m very lucky that my uni let me start placement early, do it part time, (it will take me into the beginning of January) and choose where I went. I’m equally lucky that Shine are so flexible with when and where I complete my 70-day placement so that I can fit it around my treatment, appointments, and fatigue. As I write now, with my feet up on my sofa, cat and chocolate to hand, I really couldn’t ask for more!

Before my diagnosis it would not have occurred to me that, once I had qualified as a social worker, I would like to work with young adults who have had a cancer diagnosis. In fact, the thought of it would probably have terrified me: what if I said the wrong thing? And surely it would all just be really depressing, right? Wrong!

As soon as I was diagnosed, I found Shine through a good friend of mine who was already part of the ‘cancer crew’. The support that I felt was unbelievable. Just knowing

SW2

Social work isn’t about being a child catcher!

that there were other people out there in my age group who get what it’s all about is all that I needed. I was sold! It’s the informal peer support aspect that, for me, is the best part. We meet up where people our age want to meet up, and we do what people our age want to do. We talk about cancer if we want to, but it’s not forced and awkward and, most of all, it’s actually fun and a light relief from the usual drudgery that is living with cancer.

I had gone into my degree thinking that, once qualified, I would work with children and young people because that is where the majority of my work experience had been based. However, now I have a new group of fabulously ‘Shiny’ people to be passionate about. I believe that my personal experiences can have a positive impact on others in similar situations. Just before starting placement I was really excited to become a joint Network Leader for Dorset. I love it and I will continue to do it long after placement has finished!

Social work comes with a lot of preconceived ideas, stigmas, and a veil of mystery that the tabloid press does nothing to dispel. With their constant scare-mongering they would have you believe that we are all some kind of crazed child-catchers!

So what exactly IS social work – and why is it relevant to you?

Social work is a lot of things but this statement sums it up quite nicely.SW

As we all know, life can be turned upside down in an instant, and when that happens we all need someone to reach out to, whether that’s for practical or emotional support. I am really lucky to have a fantastic specialist social worker based in my hospital oncology unit, but sadly these are very few and far between. His role is funded by a charity and he has helped me with things like filling out benefits forms and making sure that I have an up-to-date seatbelt exemption (I need this because of the placement of my portacath).

Shine fills that much-needed gap for young adults with cancer who are looking for support.

While I’m on placement with Shine, I will continue to jointly run the local Dorset Network which includes organising meet-ups and events, welcoming new members, supporting alumni to move on as they approach 50, and developing a local ‘Plus One’ Network. But I will also be working on a number of other projects, including developing a directory of useful services for Shine members, collecting evidence of the current needs of young adults with cancer, and working on a diversity project to ensure that Shine is reaching all communities affected by cancer at a young age. In addition, I will be at the Manchester Great Escape as a peer supporter, and supporting the delivery of a number of workshops. On my first day of placement I headed to London for a training day for Shine’s Network Leaders. I was very pleased to find out that the core skills and values necessary for the role are identical to those required of a social worker: to be passionate about helping others, supportive, empowering, friendly, empathetic, caring, respectful, and to demonstrate integrity and trustworthiness.

I’m really excited about my placement because I feel like it’s important work that will make a genuine difference. Personally, since I’ve started on placement I feel so much more confident in my ability to function as a (relatively!) normal human being again. Being on placement in a cancer support charity has also, perversely, taken the focus off my own cancer and also given me a new-found purpose in life again. One of the only possible challenges that I predict is keeping on the right side of that fine boundary line, but for the next few months I’ll be making sure that I step back and look at all situations with my ‘Student Social Worker’ hat on.

I would love to hear from you! Maybe you’ve got feedback from a personal experience of interacting with a social worker or trying to navigate the benefits system? Maybe Shine has been an invaluable support and you’d be lost without them? Perhaps you can relate to my feelings of returning to study or work after your diagnosis? Whatever it is, please do drop me a line!

You can get in touch with Rosie by emailing her at hi@shinecancersupport.org.

 

 

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.

IMG_0322

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.

a06397d4-04b0-47af-b2f3-acf61e4e2bab

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). 

Ten years after testicular cancer

In this post, Tom Richens writes about his diagnosis and treatment for testicular cancer, and how he’s chosen to celebrate long-term remission.


The 8th of August 2008 is an easy date to remember due to its symmetry. It is also a date that I will never forget: the date that I was diagnosed with testicular cancer. I was 29 years old. Deep down I knew that something had been wrong for a long time, but I kept convincing myself that everything was OK. I had felt a persistent dull ache in my right testicle, but there were other symptoms too. I experienced acute back and abdominal pain, then fatigue. Eventually, my right testicle was excruciatingly painful and about twice the size of my left one. I went to see my GP. He immediately sent me to hospital to undergo an ultrasound, and by the end of that day I had my diagnosis confirmed: a malignant teratoma of my right testicle. The testicle had been taken over completely by the tumour.

SocialMediaReady-1

Tom, ten years on

My right testicle was removed via an orchidectomy. I was offered a prosthesis but I declined due to the increased risk of infection. As it was, I got an infection anyway. The orchidectomy was a success and the tumour markers looked clear, which was a good sign that the tumour hadn’t spread. I had been incredibly lucky.

I was referred to a clinical oncologist, who set out my options for further treatment. If I had chemotherapy there would be about 2% chance of the cancer coming back, and I would need regular check-ups for five years. If I didn’t have chemo there would be about 40% chance of the cancer returning, and I would need to have tests every two weeks for five years. There really was not a choice to be had, so I agreed to have chemotherapy.

I was put on the BEP chemotherapy regime. My treatment started on the 14th of October 2008, my wife’s birthday. Never let it be said that I don’t know how to show her a good time! Initially I experienced very few side effects, but within a short space of time I began to lose my hair and the treatment became quite debilitating. I had no energy at all and would generally alternate between sleeping and being sick. . I craved burnt and bland food – very strange for someone who has always been a great food lover.

I was relieved when I finished my treatment. However, I’d be lying if I said that I didn’t have other, less positive emotions. Anxiety that the cancer would come back was there all the time. What if that meant losing my other testicle? Deep down, I also felt a sense of insecurity as a result of the treatment. I didn’t find this easy to acknowledge at the time. Eventually I went to see a counsellor, and this proved to be really helpful.  I could open up about what having cancer had really meant to me. I would say to anyone: it is no shame to feel insecure, anxious, or even angry. Talking about it is not a sign of weakness, but actually a sign of great strength. I know that as blokes, we don’t like doing that!

I had regular check-up appointments for five years: first at three-monthly intervals and then less frequently, until I was seen on a yearly basis. There were always nerves before my appointments, but I knew that the medical staff would pick up anything sinister.  After a few minor bumps in the road, after five years I was officially discharged. It was a fantastic feeling, and time for the celebrations to start!

I always felt that it was really important to mark key milestones in my remission. My wife, my step-children and I enjoyed a fabulous holiday to Egypt in 2009 to mark one year of being ‘all-clear’. We probably wouldn’t have gone if it weren’t for what had happened the previous year, and we had a terrific time. They deserved it more than I did really, as their love and support throughout my treatment was amazing. When I was discharged after five years, we had a great night celebrating, and then my wife and I took a spa break at a beautiful hotel in the Cotswolds. Finally, as this year marks ten years since my cancer diagnosis, I have decided to embark on a photo shoot. I have never been a particularly self-confident guy, but the photoshoot really represented how far I had come and I got progressively braver as the shoot went on! I could never have imagined that I would have been brave enough to do something like this, so it really was a final piece of closure.

SocialMediaReady-2

Ten-year anniversary photo shoot…

I often get asked if having cancer changed me. Overall, I would say I am the same person as I was ten years ago, but there are certainly some subtle changes and lessons I have taken on board. I still worry about work at times, but I always make far more of an effort to ensure family and friends come first. Having cancer gave me the impetus to do things that I would never have considered previously. I organised a charity cricket match in 2010 that raised approximately £5000 for Cancer Research UK. It took eight months of hard planning but when it all came together it was a fabulous day. I also ran the London Marathon in 2016 to raise money for the same charity. It was damn hard work, but the most wonderful and rewarding experience. I would never have considered it had I not had such a burning desire to give something back after my own cancer experience.

As a cancer survivor you will never forget your diagnosis or treatment. However, I think that it is important to look forward in life. For me, the raw emotion of having cancer has subsided over time. I would never say that I was lucky because getting cancer isn’t lucky but today, life as a survivor is pretty damn good. Value every day and enjoy life.

 

The photos of Tom Richens were taken by Khandie Photography, and are reproduced here with permission from the photographer.

Website – www.KhandiePhotography.com

Facebook – www.facebook.com/KhandiePhotography

Shine takes cancer support to Yorkshire!

Linz was diagnosed with Triple Negative Breast Cancer and the BRCA1 gene just after turning 38, and she’s passionate about bringing people together to help deal with cancer. In this post, she writes about her first Shine event: a weekend away with Shine North East in the Yorkshire Dales.


The weekend was full of promise: I was coming to this event as a newbie, all the way from Edinburgh to gate-crash a weekend of ‘folk like me’. The setting was a lovely holiday home called Springwood Cottage near Huddersfield, and the background music was the soundtrack from ‘The Greatest Showman’. The idea was simply for a group of young adults with cancer to share a cottage for the weekend: no plans, no itinerary, no rules, and no barriers.  All just pitch up, pitch in, and enjoy ourselves.

I had come across Shine Cancer Support only a few months previously, just by doing a search on Facebook.  I am a member of various cancer support groups on Facebook and Twitter, but aside from a lovely lunch ‘tweet up’ in Manchester a few months back, I had not actually engaged much with other people going through cancer treatment. There certainly isn’t much for us ‘in-betweeners’ aged 20-50. Talking to people online is great but meeting up in person is so much better! In total there were going to be 17 of us on this weekend – all walks of life, all different types of cancer and associated treatments.  All in all, a lovely bunch of people who are much more than the ‘cancer tag’!

After getting there, two of us went for coffee and cake as we waited to pick up some of the group from the train station five minutes away.  Finding the train station was easy but finding my way back to the cottage each time meant a little detour… oops!

Friday evening was a relaxed affair, introducing ourselves and getting ourselves set up in the rooms.  The location itself was amazing as we had our own hot tub, as well as a rooftop patio!  For some, the thought of sharing rooms with strangers was possibly a little odd at first, but actually it all turned out grand. Dinner was spectacular, and after a few drinks of own choosing we all attempted the icebreaker of making ourselves a cardboard crown with various craft materials.  Some people are exceptionally talented in this area. I am clearly not!

It was really interesting to talk to people about what cancer they have/had, and the treatment plans and side effects/consequences of treatment they experienced.  It was also good to hear about their personal lives, both pre- and post-diagnosis.  To be quite frank, I am at that stage where I question everything about my life, who I am, and what I want to do now. For a little while I had become quite insular and cancer was all I could focus on.  But even more important for me over this weekend was actually to see and hear how other people live their lives post-diagnosis and treatment, in terms of families, holidays, adventures, and work.  dsc_0584.jpg

Given that this was very much a weekend where everyone pitched in and helped, it was almost like an episode of ‘Big Brother’ without the cameras…! In a non-threatening, non-competitive way, of course!

Saturday was relaxing, too. First off, two of the women produced a spectacular cooked breakfast. I honestly don’t think I have eaten so well anywhere!

Afterwards, a beauty therapist visited to offer sessions ranging from facials and massages, through to reflexology, for those who were interested.  Some of us decided to take a few cars over to the nearby town of Holmfirth, West Yorkshire, which is where ‘Last of the Summer Wine’ was filmed.  There was actually a folk festival on that day, and it was great to soak up the atmosphere and find a wee secluded beer garden, then search for ice cream. Other people in the group opted to walk around and soak up the wonderful weather that we had that weekend too.

Later that night, after another amazing dinner, most of us sat down to watch Eurovision and play some games.  Many of us also took the opportunity to jump into the hot tub and let any lingering strains and tensions melt away…

Sunday morning saw another spectacular cooked breakfast before some of us took a gentle meandering walk up the road.  A Sunday roast completed the weekend for me, before I headed home into the sunset…

Overall, it was a great weekend, and I feel that I have made some new friends that actually get everything I have experienced and inspire me to get through the post-treatment slump. It was also not all about the cancer! We laughed and joked, and I even managed to use some of my professional skills to help others, too.

If you’re ever thinking about coming to an event like this one, then I would definitely recommend it!

I’d like to say a HUGE thank you to Shine North East network leader Rachel, who organised the whole weekend.  She’s a special and wonderful person who is spectacular and lovely and kind. Thank you for letting me come!  I know how much effort it takes to organise an event like this, and that makes both Rachel and Shine very special indeed.

Melanoma: more than ‘just skin cancer’

In this blog post, we’re bringing you a cancer experience story written by Caroline, a member of our community who was diagnosed with a rare form of melanoma at the age of 29. She’s keen to raise awareness of skin cancer and share the impact that it has had on her life. As always, please share this blog post and let us know what you think!


I’ve been worried about developing skin cancer since I was 14 years old. I had been stocking up on my favourite fruit-scented toiletries from a certain well-known beauty retailer, and the shop assistant had slipped a leaflet on sun protection into my bag. I’m pale, red-haired, and freckled – and since reading that leaflet, my delicate skin has barely seen the sun. I cover my shoulders in summer, wear sunscreen in winter, and pride myself on staying as white as possible. So how did I get skin cancer?

Mucosal Melanoma

I was diagnosed with mucosal melanoma, a rare form of skin cancer, in May 2017. I was 29 years old. Mucosal melanoma develops on mucosal tissue such as that in the nose, mouth, and sinuses, or in the gastrointestinal tract. In women, it can develop in the vagina, and on the vulva. In men, it may be found in the penis. I’m not going to tell you where my small tumour appeared – but suffice to say, you’re unlikely to see any of my surgical scars!

I spotted a suspicious growth in December 2016, but it took several months – and several

IMG_20170603_132007375

Guest blogger, Caroline

doctor’s visits – before I had a biopsy. It’s hard not to feel angry about weeks of missed diagnoses, but my disease is so rare that I can’t blame the doctors who dismissed my symptoms. However, I knew that something was wrong, and I’m glad I persevered with return visits until I finally had a diagnosis. I learned early on in my cancer journey that there is nothing more important than being your own advocate. Melanoma can spread quickly, and more than one medical professional has told me that if I had not kept returning to clinics, I might not be here now. It’s a sobering thought.

Initially, my treatment plan was the same as the treatment plan for cutaneous melanoma (the one with the moles): I had a surgical biopsy to determine the diagnosis, and then went back into surgery a few weeks later for a wide local excision and a sentinel node biopsy. The wide local excision involved taking a larger section of tissue from the area around the tumour to make sure that there were no more cancerous cells. For the sentinel node biopsy, two lymph nodes in my groin were removed and tested for melanoma cells. Thankfully, there was no melanoma in my lymph nodes – but if there had been, my diagnosis would have been changed from Stage II mucosal melanoma to Stage III, and I would have had advanced cancer.

Unfortunately, my wide local excision found some more melanoma cells in-situ (pre-cancerous cells, which have the potential to develop into cancer) – so a few weeks later, once I’d healed, I was wheeled back into surgery for a third operation. Then, once I’d healed from my third operation, I had a fourth. And then a fifth. Each surgery delivered the same result: a small area of amelanotic melanoma in-situ. ‘Amelanotic’ means that the melanoma isn’t pigmented. In fact, it’s invisible! In the space of eight months, I went from a healthy, active, young woman who had never even set foot in a hospital, to a cancer patient who had been through five surgeries in attempts to rid her body of a now-invisible aggressive cancer. I can scarcely believe it.

Wow, you look so well!

One of the most difficult aspects of my diagnosis has been looking well. Melanoma doesn’t respond well to chemotherapy, and it is not an option for me. When I first ‘came out’ about my cancer, I was asked a lot of questions about chemotherapy. When would I have it? When would I lose my hair? How could I have a serious illness, but look so healthy? And (the worst): did I actually have a serious illness? Despite all my rounds of surgery, and the trauma that comes with any cancer diagnosis, I began to feel as if my specific ‘flavour’ of cancer was being downplayed. If I mentioned melanoma, I felt as if I had to explain that I had always looked after my skin, and actually my diagnosis was not down to any irresponsible behaviour. As an aside: just wear your sunscreen! And no, I have no idea if that mole on your arm is dodgy…

Cancer messes with your head

Although I know deep down that my diagnosis is serious, it took me a long time to stop feeling like a cancer fraud. Not only do I look healthier than ‘the average cancer patient’ (fun fact: there’s no such thing!), but I can’t relate to many support group discussions about chemotherapy and radiotherapy side effects as I had never had that experience. Even if my cancer progresses, chemotherapy will be a last resort.

Through Shine, I’ve been able to meet others who have ‘just had surgery’ and can relate to some of the feelings I’ve described. It’s unlikely that I’ll ever meet someone who has the same diagnosis as me (if you have mucosal melanoma, please make yourself known!), but it is wonderful to be part of a community that acknowledges all the effects that a cancer diagnosis can have. I don’t have to explain or justify myself anymore!

I’ve only lived with cancer for a few months, yet the experience has already taught me a lot about myself. It matters less and less what other people think or believe about my illness. Instead, I focus on how I feel, and my own perceptions of my strengths and limitations. I’m finally giving myself the space to listen to my own needs – and that could be anything from needing to burn off some energy at the gym, to requiring a lazy day of nothing on the sofa.

It is so important to listen to yourself.