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). 

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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.

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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.

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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

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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.

Great Escape: reunited!

2018 Escapee Caroline shares her experience of our Great Escape Reunion, a one-off event celebrating five years of weekend retreats for young people with cancer.


I was lucky enough to be able to attend the 2018 Shine Great Escape (read my fellow Escapee Rosie’s blog about it here), and I was invited to the Great Escape Reunion almost as soon as I had accepted my place on the Escape itself!

It turns out that 2018 was a year worthy of celebration: the Great Escape that I attended was the fifth weekend away for young adults with cancer that Ceinwen Giles and Emma Willis had organised since Shine began. In March, Shine organised a reunion event in London, inviting all of those who had attended a Great Escape to come along and celebrate the anniversary with them.

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Some of the 2018 Great Escape attendees reunited!

The afternoon began with tea, cake, and conversation, which gave us time to chat with our fellow Escapees and meet those who had attended in previous years. While it was a great opportunity for many to catch up, for the 2018 attendees it was also a chance to get to know each other better. Although we all feel a strong bond with our ‘tribe’ as a result of the Escape, there are still so many things that we want to learn!

Once we’d warmed up and helped ourselves to a piece of flapjack or four, the Reunion continued in true Escape style – with Sharpies, crafts, and collages. Although some Escapees remain defiantly unartistic, everyone took part in creating collages to show how the experience had affected their lives. It was amazing to see how much one weekend away could change our perceptions about cancer and our attitudes towards living with the disease.

After the activities came a potted history of the Shine and the Escape from Ceinwen and Emma, including stories about how they’d manage to convince friends and friends of friends to sign up to voluntarily spend a weekend at a hotel in Bournemouth with a group of young people with cancer – hardly the most glamorous of mini-break ideas! We are all overwhelming grateful that they pulled it off, as the next portion of the afternoon showed. Representatives from each Great Escape gave short presentations about their experiences and gave us an insight into what everyone had been doing since their Escape. This part of the afternoon was emotional for many reasons. It was fantastic to see photos of weddings, exciting trips abroad, and new babies, which gave us optimism for our futures beyond cancer. However, the moving tributes to those who have sadly passed away since attending their Escape reminded us all about what it is that brings us together. After the presentations, we raised a glass not only to Ceinwen, Emma, and the volunteers, but also to the wonderful Escapees who are no longer with us.

And as for the 2018 Escapees? Although we weren’t convinced that we would have much to report after only a few weeks apart, we had managed to achieve a surprising amount: a few new jobs, several dates, a couple of people returning to work, and some meet-ups already in the calendar for later in the year. And then, of course, the few thousand (!) WhatsApp messages we had exchanged with each other since leaving Bournemouth. It seems that a Shine Great Escape isn’t a Shine Great Escape without a very active WhatsApp or Facebook group!

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Fond memories of the Escape…

The reunion came to a close with a group discussion about the future of Shine, and how we could ensure that more young people are able to benefit from everything the charity has to offer, then a delicious buffet.

 

I’ll leave you with a few comments about the day from my fellow 2018 Escapees. Thank you again for everything Shine, and all the volunteers who have contributed to the Great Escape!

‘It was great to chat to previous attendees and see that they are still benefiting from the Escape and have gone on to make good progress. Also, it was nice to see that they are still good friends with each other years later. The Escape has a long-lasting impact and doesn’t just fizzle out after leaving the bubble of The Grove.’

‘I get really tearful thinking about our Escape and the Reunion. I feel like I belong with you guys, where I don’t belong anywhere else.’

‘[Our group photo from the Reunion is] my work screensaver!! I look really happy, which makes me smile, and when I have a tough day it reminds me that we’re in this together.’

What is a ‘Great Escape’? To learn more about the Shine Great Escape and how you could apply to take part, check out our website here

Introducing Kate!

Five years ago, Shine didn’t have any staff. In fact, we were really just getting the ball rolling on this young adult cancer charity whole thing. Looking back at where we started makes it even more exciting that we’ve just welcomed our FOURTH employee!

Read below to find out more about Kate – she’ll be supporting our 14 Shine Networks across the country. We’re still a tiny charity (with big ambitions) but we’ve grown a lot in the last few years and we couldn’t be happier to have someone new on our team!


Hello, I’m Kate!

Trying to put almost 40 years of life into a few hundred words isn’t easy AND I am not one for talking about myself, but I wanted to introduce myself and give you a bit of insight into why I do what I do.

Born in Northumberland (very proud of this!), we moved south to Bedfordshire when I was nine so my accent didn’t have a chance! Aged ten, I was diagnosed with Type 1 Diabetes which had a huge impact on my education as I missed so much school. There was an underlying cause of the diabetes which wasn’t discovered until I was 16, so it was IMPOSSIBLE to manage!KJ PP

As a young teen, I wanted to go into medicine, but all the health stuff got in the way and I wasn’t able to finish my A-levels or go to university. Then, when I lost most of my sight in my early 20s because of diabetes, I really felt that the odds were stacked against me. Fortunately, with little sight I was still able to do some studying with the Open University, which was brilliant. After hundreds of bouts of laser treatment and a month in Addenbrooke’s Hospital, Cambridge, I thankfully regained a lot of my vision and this remains fairly stable to-date.

Handling all this stuff at such a young age had a massive impact on my mental health and I really struggled with anxiety and depression, but it made me particularly interested in the impact that physical health challenges can have on our mental health. As I found it difficult to get into work, I started volunteering for a tiny mental health charity based in Luton, and before I knew it I was working with them full-time and loving it. I worked with people who had various mental health challenges, helping them to write and perform small drama pieces for health care professionals and the public to help them understand what life is like with a mental health condition. Although I was most definitely not into the drama side of things, I found it incredibly rewarding to be able to bring both sides of the coin together and to challenge perceptions, leading to changes in clinical practice. Nowadays, this would be called something fancy like ‘co-production’ – but nearly 20 years ago I don’t think that term existed!

KJ Beach 1Fast forward to today, and I have had the privilege of working for several charities including Mind, Crohn’s and Colitis UK, and most recently Cancer Research UK. My focus was volunteer management until 2015, when I took on a patient engagement role which brought patients and clinicians together at local and national levels to improve services. Over the past few months, as well as working in patient engagement, I have started to talk about my own experiences as a patient. This has been so rewarding. I have been able to get involved in an NHS Improvement initiative for patient leaders and I have also done some work with finance and insurance company American International Group (AIG), helping their managers to become more inclusive.

I am so happy to be part of Shine Cancer Support, and I feel that all the professional and personal experience that I have had fits perfectly with the role of supporting and developing Shine’s local networks. What excites me the most is working with all of you to help Shine grow and reach more people while keeping true to the Shiny vibe! What you say, what you need, and how you feel about things really matter, and together we are such a force for good. I am really looking forward to getting to know all of the network leaders, and understanding how we can work better together across Shine’s community. Without all of the amazing network leaders, Shine would simply be four people desperate to make a difference to the lives of young adults who have had a cancer diagnosis.

I get what it is like to be ill when you are just getting to grips with yourself and life: to have that rug pulled out from under you, and to have so many hopes and dreams shattered. That said, I wouldn’t change my past as it has brought me here. 2018 is a big year for me as I turn 40 in November and I am already planning the celebrations! I never expected to reach my fortieth birthday, so it really will be a big party (parties…?) and I will be more than happy to accept cake when I am out and about.

See you soon!

How I told my five-year old I had cancer…

In this post, Shine member Steph tells us how she talked to her son about her diagnosis. What are your experiences of talking to young children about cancer? Please share this post and add a comment if you like.


When I was diagnosed with cancer in July 2016, my first thoughts were ‘I just need to get through this for him’ – ‘him’ being my nearly five-year old, Theo. We’d arranged a fantastic party for his fifth birthday and all I was concerned about was being there for it.

As it happened, the first part of my treatment was booked in for a week after the party. This was such a relief. The sun shined brightly that day and it couldn’t have gone better.

I knew, though, that I had to tell him about my cancer because there were going to be things he’d see, and things that would come as a surprise to him. Perhaps everything he was used to might change. Who knew at this point?

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Steph and Theo

I read a book that was written to help you tell your children about a cancer diagnosis, and I was genuinely saddened by it. It talked about the family getting angry and the diagnosis not being the child’s fault, and about parents getting cross but telling the child not to blame themselves. Then there was a picture of utter chaos: dad was in the kitchen in his pyjamas, there was a knife in the fish tank, the dog was eating the kids’ cereal and the kitchen floor was flooded. It was absolute carnage – it simply looked to me like daddy wouldn’t be able to cope. This was not at all what I wanted Theo to see or understand. The book and the tale it told just really didn’t work for me.

A different approach

I wanted something that said, ‘no matter what happens, Mummy is doing her absolute best for you, and doing everything in her power to be OK’. So I decided to write a poem. I needed it to be personal to Theo to help him understand that the future might look different for a while, and that Mummy wasn’t going to be well.

Dear Theo,

Mummy has written this for you, it’s a rhyme, 

And wants to read it to you from time to time.

For now, mummy does feel a little sick,

But a cuddle from you would do the trick.

Sometimes mummy will stay in hospital for the night,

The nurses will take good care of her, she’ll be alright.

You know you take medicine from a spoon,

Mummy has medicine too which’ll make her better soon.

The doctors are doing all they can to make her well,

Why not even wish her a get well soon spell?

Mummy is trying her absolute best,

But sometimes she needs a little rest.

You are all she thinks about day and night,

And dreams about you and her flying your kite.

As always be the loving person you’ve always been,

You’re the bravest boy mummy has ever seen.

Theo’s reaction

The first time I read it to Theo, he smiled and said ‘wow, it rhymes!’. I knew, though, that he’d heard the underlying messages. I was lucky too that when Theo was with his dad, he’d read it to him as well. Theo heard the poem over and over again, and even asked for it sometimes. I think it prepared him for the next few months and taught him that there was likely to be a fair amount of change coming.

As changes were on the horizon, I told him when they were going to happen: a stay in hospital, surgery (and therefore he’d have to be extra careful and not jump on me) and losing my hair. Theo never really asked any questions and dealt with it all very matter-of-factly – a little like me, I think.

Theo really didn’t like my wig though and wanted me to just ‘be me’ and not hide behind it. My hair is growing back now, and the other day he asked if I could shave it again as that’s what he preferred! It struck me that no matter what, children love you unconditionally – and even if I’m feeling different or unusual, to him I’m normal and I’m his mummy.

I also visited Theo’s school as I didn’t know how he would be affected by my illness and if it might come out in class. The school were fantastic: they set up an Emotional Learning Support Assistant for Theo, with whom he had a chat with once a week. It seemed that no matter what was happening, I was still his mummy, and he simply told them what was going on at that point in time. It gave me a great peace of mind to know that the staff were looking out for him when I wasn’t able to do so.

Looking back

I find my poem hard to read now as it brings back so many difficult memories. At the time, my priority was to make sure that Theo would be okay, and that I got through everything as easily as I could for him.

I’m so glad that I didn’t go in all guns blazing with that book, and that I took some time to think about what was right for us.

If you like the poem or think it would work for you, too, then feel free to read it to your children.

If you’re affected by any of the issues that Steph has discussed, you can join our private Facebook group and find peer support.

If you’re free on 19th May, join us at Shine Connect 2018, our annual conference. We’re having a session specifically for parents going through cancer who want to support their children. More information at shineconnect.co.uk.

You can also look at the list of useful organisations on our website