Ten tips for handling chemotherapy

Receiving a cancer diagnosis can feel as if you are stepping into the unknown. We often receive questions about how to prepare for different types of cancer treatment – and chemotherapy is usually top of the list. We turned to our Shine Cancer Support community members and asked them to share their tips on making it through chemo and we’ve compiled them below. Knowledge is power so read on for our top ten tips…!

1. Ask what to expect from your treatment

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Ask what to expect – it may not be as bad as you were thinking!

Cancer isn’t one disease – and chemotherapy isn’t ‘one size fits all’ either. Before you start treatment, ask your doctor or nurse for specific details about the drugs that you’ll receive. Will you need to take tablets, or will your treatment will be given intravenously? If you need to go to hospital for treatment, how long can you expect to be there? Once you’ve had the treatment, what side effects can you expect? What should you do if you feel unwell? Will your treatment affect your fertility? It can be helpful to sit down with friends or family and brainstorm a list of questions that you would like to ask your medical team. It might sound like a cliché, but there really is no such thing as a bad question. There may well be things you’ve never heard of before (hello mucositis!) but forewarned is forearmed and it’s better to know what might happen so you can be prepared to manage it.

2. Plan your time on the ward

It can be daunting to walk into a treatment centre for the first time. Before your first treatment, you might find it helpful to know a bit more about the place where you will be treated. Does the ward have wifi, for example, or a TV? What is the visiting policy? Do you need to bring snacks or will food be provided? You can usually get answers to these questions from your specialist nurse, or by calling the ward secretary. If you have time, you could also pop your head around the door of the ward before your treatment and see what it’s like.

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Waiting around can be BORING. Don’t just lie there – watch Netflix!

Shine member Neil advises looking at your data plan if your hospital doesn’t have good wifi – you might want to purchase extra in advance, or get a mobile wifi device. You don’t want to find yourself out of 4G halfway through your Netflix series!

3. Plan your journey (there and back!)

Running late can add even more stress to a situation that’s difficult enough! Take a moment to work out how to get to hospital for your treatment. Can someone drive you there, or will you need to take public transport? If you’re driving, do you need to pay for parking? Shine member Tracey recommends checking with your medical team: some hospitals offer free or discounted parking to patients who are in regular treatment. If you’re in London, consider if and when you’re going to take public transport to and from your appointments. Cancer on Board will send you a free badge to wear while TfL also provides free “Please offer me a seat” badges – don’t be embarrassed! You deserve a seat!

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Tablet and phone recommended!

4. Treat it like a long-haul flight

When asked members of our Shine community what advice they would give to others who are about to start chemotherapy, this was the overwhelming consensus: pack a bag with all the things that you’d take on a long plane journey. Books, puzzle books, a laptop or tablet, fluffy socks, and a nice jumper or cardigan were all on our list! Shine member Christine highly recommends headphones: ‘even if you don’t want to listen to music/watch something on your tablet, you might need them if you get stuck next to an annoying person…!’

5. Track your side effects

Your medical team will want to know how you are doing between treatments. Keep a notebook with details of any side effects that you experience, so that you can give accurate information to your doctor. If notebooks aren’t really your thing, you could also use try note-taking apps. And don’t be shy about mentioning side effects – a lot of things can be managed with medication or the right support. Don’t suffer in silence!

6. Get some fresh air

Shine member Samantha found getting outside to be really helpful when she was having chemotherapy treatment: ‘even on the days when you are as weak as water, a toddle in the garden or wander up and down the street will give you fresh air, confidence in moving about and sense of accomplishment.’ Exercise has been shown to benefit people with living cancer (let’s face it – exercise benefits everyone!), but it can be difficult to know where to begin. If in doubt, ask your medical team for advice. If you exercised regularly before your cancer diagnosis, you might also want to look at cancerfit.me, a new community created by doctors and athletes with an interest in sport and fitness for cancer patients. And you can also read our blogs about how running, cycling and yoga have helped Shine members through treatment.

7. Get help!

It can be difficult to cope with a cancer diagnosis by yourself. Mobilise your team! You might find it helpful to ask a close friend or family member to co-ordinate those who come forward with offers of help. Specific offers of help are often easiest to take up, but many people struggle to know what to do when they hear that someone they love has been diagnosed with cancer. If you can, make a list of things that might be helpful and share this with a friend/friends. Do you need someone to make you meals, for example? Or someone to walk your dog? Would a visit from a friend make your week? Let them know! You can direct them to our blog about ways to help a friend with cancer – and you can direct them to our post on what to say to people with cancer while you’re at it!

8. Prepare yourself for bad days

Some people sail through cancer treatment with very few side effects, while others can find themselves cowering under a duvet for days after treatment. Shine member Stewart says: ‘plan for the side effects… BUT don’t get drowned in the gloom of EXPECTING them all. Everyone’s experience is different, so know about things like the possible options for creams, gloves, hair shaving, food to ease/slow bowels, support networks etc.’ Your doctor or nurse will be able to provide you with specific information about how to treat side effects from your drugs. And, as hard as it is, remember that they won’t last forever.

9. Don’t forget the good days

More wise words from Stewart! He recommends that you also ‘plan for the time in-between.’ You may have to manage expectations around what you can do, but that shouldn’t stop you from having fun! Shine member Caroline keeps a list of things that she’d like to do on good days: ‘I have a list of new cafes or restaurants that I’d like to try, and places that I’d like to visit on day trips. They’re all options, rather than firm plans, but on good days I love to scan the list and pick out something fun to do.’

10. Listen to your body

Receiving a cancer diagnosis can make you much more in tune with your own body. Are you suddenly noticing lots of niggling aches and pains that you swear weren’t there before? Join the club! If you have any concerns about your health, contact your medical team – that’s why they’re there! If you’re feeling tired, perhaps think twice about going on that big night out and invite a friend over to spend the evening with you instead. By the same token: if you wake up in the morning and feel well, embrace it! Life doesn’t have to stop when you have cancer.

 

Cancer can make you feel lonely. If you’d like to chat to other young people with cancer and share more tips and tricks about how to cope, join our private Facebook group Shine Young Adult Cancer Support (20s, 30s & 40s). You can find out more about all the support we offer via our website.

Special thanks to Joe Hague for letting us use his photo (above!). If you’d like to learn more about his photography, please check out his Facebook page or his Go Fund Me page.

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). 

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.

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

Escaping in 2018!

Every year in January, we escape! Since 2014, Shine has run a Great Escape in Bournemouth. We’ve had amazing feedback over the years from all of our “Escapees” – young adults with cancer who tell us that over the 3.5 days that they’re together that they make life-long friends.  One of our 2018 Escapees, Rosie, has written about her experiences. Want to learn more? Read on! And if you’re interested, we’ll be opening applications for our brand new Manchester Escape in May!


IMG_0451When I was asked to write this blog about my recent experience at the Escape I had to think about my answer for a little while. The first blog that I wrote for Shine nearly a year and a half ago (just a couple of months after my diagnosis) had, looking back on it, a naively positive tone to it. At that time, as far as I could see, my diagnosis and treatment had a beginning, a middle and an end – upon which I would happily return to my old life and then climb Kilimanjaro (as you do).

Well, anyone who has lived with cancer for a while knows that cancer never really leaves you and that you have to go through a period of grieving for your old life and adjusting to a new normal. In my case, my medical team are unsure if my breast cancer has spread to my spine or not and I am therefore now on treatment indefinitely.

My body and my mind have been through a lot and with that I stepped back from blogging because I didn’t feel like I had anything very positive to write about. I didn’t want to be one of those whingeing cancer patients just going on about how sh*t everything is. But the truth is it is sh*t and that’s ok. And it’s also probably a bit more relatable than sickening positivity!

So, I found myself writing this blog and in the process of trying to come up with a catch title, I Googled ‘Escape’ and the first definition that came up was ‘break free’. It made me think of a caterpillar metamorphosing into a butterfly which is kind of how I think of myself before and after the Escape.Blog 1

When the opportunity came to apply for the Escape, there was never any question in my mind that I was absolutely going to apply. Those I knew who had been before hadn’t stopped raving about it and FOMO (Fear Of Missing Out) is a wonderful thing!

I was so excited when my spot was confirmed and I couldn’t wait to meet all of the other “Escapees”. I was pleased to find that I already knew some of them from Shine Camp. A private Facebook group was set up and we were also all asked to submit a picture and a short bio so that we could start getting to know each other before the big day came. This was also really useful for people who were anxious about attending because they were able to share their fears online and everybody was really supportive in return.

It took me a whole 6 minutes to arrive at The Grove Hotel in Bournemouth (I live locally), which is an awesome place for cancer patients and those with life threatening illnesses. As a group, we took over the whole hotel and brought the average age of their usual guests down significantly! The hotel staff were great and seem to enjoy this annual event which is now in its 5th year. The on-call nurse sometimes even doubles up as a bartender….nothing if not efficient!

There were about 30 of us in total including Shine staff, volunteers, and peer supporters.

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The 2018 Escapees and peer supporters before the hike

After collecting our awesome goody bags we were ready to get started. The next few days were a full on mixture of laughing, crying, information gathering, team building, soul-searching, sharing epic-ness. We had entered into a safe bubble and at the end of it, although we were all mentally and physically exhausted, no-one wanted to leave and go back into the real world.

“Life changing”, “one of the best weekends of my life”, “four of the most exhausting but brilliant days I have ever experienced”, “fantastic”, “fabulous” “wonderful”, “amazing”, “incredible”, and “uplifiting” are just some of the words that were used in our post-Escape WhatsApp group to describe the weekend. If that doesn’t encourage you to apply for next year’s Escape, I’m not sure what will!

There were a number of workshops run at the Escape. One of them was titled ‘Debunking myths’ and I think this Russell Howard video sums it up quite nicely!

Another session was called ‘Living with Cancer’. Working in groups, we were encouraged to write down all of the things that we have lost due to cancer….needless to say that those pages were full very quickly and we could have carried on. Some common themes were dignity, confidence, friends, family, control, independence, future, certainty. Is it any wonder that so many of us experience some form of depression, anxiety and/or PTSD following diagnosis? There was ‘on the ground’ emotional support offered by both professionals and peer supporters for the entire weekend and hints, tips and signposting to other organisations given for the longer term. This session was the inspiration for my #onewordforcancer on World Cancer Day.

It is brilliant to have been able to bond with so many other young people who know what it’s like to pick our way through this cancer minefield. Humour is a really important coping mechanism and there was plenty of that in evidence at the Escape. Some of us also decided we should all carry red and yellow cards for those people in our life who get us down!

Saturday night brought with it the opportunity to let our hair (if it had grown back) down, thanks to a photo booth and karaoke provided by the awesome peer supporter Richard.

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Photo booth

We were also honoured with a visit from our very own superhero Smash-It Man spreading his #smashitforshine mission. It really did have to be seen to be believed!

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Smash it for Shine Man made an appearance!

Sunday involved a fun warm up, some stones (can’t give away all the secrets but mine involved guilt and being kind to myself) and a trek to Hengistbury Head. The Escape is offered free of charge to attendees but it costs approximately £1000 per person to put on, so the hike is a sponsored event to help pay for attendees next year. It’s not too late to sponsor us here. 

Before the weekend was up, there was just enough time to tell the person next to us what we appreciated about them. I was told that they appreciated my resilience in the face of changing goal posts which really meant a lot to me. Just today my oncologist said that it would be against medical advice to climb Kilimanjaro. But fear not those of you who have helped me raise an incredible amount for Shine because there are other options on the table! Watch this space….

It was then not goodbye but more like “see you later” because Shine are organising a reunion for all five years of Escapees in March.

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Shelli was promised extra sponsorship if she did the hike in a Scully onesie. Done!

I would just like to take this opportunity on behalf of all of my cohort to say a massive thank you to all the staff and volunteers who are involved in this event. We know that so much behind-the-scenes stuff goes on and we really are forever grateful. Special mention to Christopher who stepped down as a peer supporter this year but remains as Chair of the Board of Trustees and an invaluable asset to the charity.

(Thank you also to everyone who let me use your photos, sorry I couldn’t fit them all in! xx)

Rosie is a member of Shine’s Dorset Network and was a 2018 Escapee. 

How running and cycling taught me to cope with chemotherapy

Having chemo? Fancy a run?

For many of us, the answer is a firm “no!”, but in our latest blog, Alison fills us in on how her approach to running and cycling has helped her to cope with her treatment for breast cancer, and we think there’s a lot of wisdom in her approach to breaking things down into manageable chunks. Take a read, let us know what you think – and please do share!


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Blog contributor, Alison Carter

Keeping fit and being a healthy weight have been important to me most of my adult life. As a child and in my teens I was hopeless at all sports (always one of the last to be picked for any team), but I spent hours doing ballet and tap, which kept me fit, flexible and gave me an appreciation of what my body could do. I wasn’t an especially good dancer, but I loved it.

My twenties saw me working hard and travelling a lot for my job, with not much time for exercise. Then as I turned 30, I discovered running and a female-only gym. Both these things made being fit accessible to me, and I had a light bulb moment when I realised I didn’t have to be good at something to enjoy it. I am not fast (my best half marathon was 2 hours 6 minutes), but what I don’t have in speed I make up for in determination. And probably most importantly, I discovered the massive endorphin rush, the so called “runner’s high”, that exercise gave me. What a great stress buster!

A few years later, as my right knee started to fail me, a friend suggested we cycle from London to Paris for charity to mark turning 40. Really???140727_North_Downs_Sportive_0114

Before I knew it, I’d bought a bike and was clocking up miles and enjoying the same benefits that running had given me. The charity ride was tough, but awesome and I’m now an avid cyclist. Through all of this, I developed a real appreciation of how amazing my body is. I may never have a flat stomach, but I love what my body can do for me.

The cancer bomb

So, it was a massive curveball when this January I was diagnosed with breast cancer. How could this be? How could this amazing body have cancer in it? Ok, I’ve had stress in my life and enjoyed plenty of wine, but cancer? Me?

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Having breast cancer treatment – with the cold cap!

I know some people feel their body has let them down when they get cancer, but I think it’s just really bad luck. I had no choice about getting cancer, but I can choose how I deal with it. My feeling is that how I treat my body is my best defence against the cancer coming back (my cancer is stage 2, grade 3). And I’m sure that being fit going in to breast cancer treatment has made a difference.

What cycling has taught me 

I’m just about to have my last round of chemotherapy (number six of FEC-T), to be followed by radiotherapy and Tamoxifen. Treatment is tough, but I have been able to bring to it what I have learned from running and cycling, and this has really helped me.

Treatment plans are subject to change, but it’ll be about eight months in total, so, I broke it in to chunks, as I would any long run or bike ride, with five clear stages:

  1. Surgery
  2. Chemo
  3. Radiotherapy
  4. Tamoxifen
  5. Recovery, the new me, after eight months.

When I cycle a long bike ride, such as Ride London, I train for it for months to prepare. Strangely, this is now how I view the last 15-odd years of my adult life: building a physical and emotional resilience that I never knew I’d need until the cancer bomb was dropped.

When I’m on a ride, I’ve learned that breaking it down to goals gets me through. I didn’t invent this, it’s standard practice; your brain usually gives up before your body does in such events, so finding the psychological plan is key. My first goal may be getting to the feed station at mile 19 where I know there’ll be flapjacks and so on. Experience has also shown me that I get a dip midway on all long rides and runs. I start to tire or pain or injuries start to niggle, and the end is not in sight yet.  In my head I desperately want to give up.

My treatment has been so very similar to this: one phase at a time, then one chemotherapy at a time, setting goals and rewards, and remembering that there will be a midway dip, but I’ll get through it.

After chemo round three I fell in to a huge dip, and I could happily have given up at that point. My hair was falling out, everything tasted of cardboard, my veins hurt and I had constant acid reflux and nausea. I was exhausted. Mentally and emotionally I was spent. But I took it one day at a time, just as I would have done on a tough run or ride.

On my good days, as I emerge from the side effects, I go for walks, do a spin class when I feel strong enough (I have to lie down for two hours afterwards!) and make sure I have goals that will give me a sense of purpose and achievement. As a result, during chemo I have done a Race For Life and cycled the Pink Ribbon Tour in London. I also ensure I have plans to see family and friends on my good days. These things exhaust me, but they fill my soul. I’ve learned to pace myself through cancer treatment just as I do through a run or bike ride.

My last chemo is next week. I know I’ll have a tough week where I lose myself to side effects, but one day at a time and it’ll be done. Then I can focus my energies on rebuilding myself ready for the next phase. That first finish line is almost in sight.

For many years, Alison was a fashion buyer. She now leads the creative photo studio for a large UK retailer. Working to to squeeze as much out of life as possible, she can often be found either on her bike, in a theatre, talking to her cat, at an art gallery, or having crazy fun with her niece and nephew. You can follow her blog here.  

For tips on how to support a friend with cancer, take a look at this blog entry. And for a list of things NOT to say to someone with cancer, read our blog here. 

 

Bowel cancer at 32: Life, but not as you knew it

April is Bowel Cancer Awareness month, so in our latest blog post, we’re bringing you a blog by Cara, a Shine member who was diagnosed with bowel cancer shortly after she turned 32.  Currently undergoing treatment, Cara is passionate about raising awareness of bowel cancer and its symptoms, as well as sharing her experience of treatment. Please do share this blog with others and, as always, let us know what you think!


As April is bowel cancer awareness month I am asking this:

#Isitok that on average 2,500 young people in the UK are diagnosed with bowel cancer every year and that many of these individuals experience a delayed diagnosis? A delayed diagnosis that stems from a perception that in your 20s and 30s you’re too young to possibly have bowel cancer?

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Guest blogger, Cara

I decided to write this blog post because that is exactly the situation I found myself in 14 months ago when I was diagnosed with stage 3 bowel cancer and I hope that by sharing my story I can raise awareness of the disease and make people stop and think. After all, nine out of 10 people survive bowel cancer if it is caught in the early stages and the key to this is early diagnosis. My advice is that if you have a concern and it’s not normal for you, don’t be embarrassed speak to your GP about it. We all know our own bodies and you know when something just isn’t quite right.

A little about me……

At 32 years old I found myself staring cancer in the face like an insurmountable challenge that I didn’t know if I was strong enough to tackle. It had taken 10 months to reach a diagnosis and when I speak to other people my age with bowel cancer I’m not alone in having been told we are just ‘too young to have cancer’.

My cancer story started when I decided to pay a visit to my GP because I was slightly concerned that there were some changes in my bowel habits and I was experiencing abdominal cramps. A routine blood test showed that I was anaemic and the GP made a referral. Looking back now the anaemia explained the tiredness I had been dismissing for months as something that just happens when you “turn 30” – something which now makes me chuckle as if reaching 30 puts you on some slippery slope to the realms of being an OAP!

Before I knew it, we were six months down the line with no answers as to why I was anaemic, and with the suggestion that the pain and anaemia were both down to period pain. During this time, I also had to deal with the death of my father. It was a difficult time, but as I dealt with my grief, my life began to get back to some sort of normal. I was going to the gym, going out with my friends and I even took part in a charity cycle from London to Paris with work.

However, as the weeks passed I found myself being unable to keep pace with my friends. Little did I know that my anaemia had slowly been getting worse and that lurking in my colon was a growing tumour. Just before Christmas, after a couple more visits and chats with the GP, I found out that my red blood count had fallen dangerously low and that my doctors were considering a blood transfusion. A test on a stool sample discovered blood that wasn’t visible to naked eye and I was quickly referred for a colonoscopy. That was when I knew I had cancer. I had seen this before when my father had been diagnosed. From that point my diagnosis happened very quickly but what I still couldn’t get my head around was why, with my family history of cancer, the faecal test wasn’t done at the beginning alongside everything else. It’s still something that I question today.

Since my diagnosis I have faced 14 months of endless hospital appointments, blood tests, seven hour days in the chemo unit, major surgery and blood clots, and while I would love to say I am at the stage of moving from cancer patient into the ‘life after cancer phase’, my post-chemotherapy scan showed lesions on my liver and the cycle has begun all over again. I am now undergoing a more aggressive chemotherapy which involves the joy of a ‘cold cap’ in a vain attempt to save my hair!

Another twist in my tale…..I have Lynch Syndrome…..

Lynch syndrome is the most common form of hereditary colon cancer and can increase the risk of developing colon cancer by up to 80%. Statistics make it as common as the BRCA mutation, but many people won’t have heard of it. Being in active treatment, I haven’t been able to fully address the impact that Lynch syndrome could have on my future, but I know that when the time comes it will have an impact on decisions about children and also that there will be decisions to make about having preventive procedures. While it would be very easy to think that knowledge of this mutation could have helped to detect my cancer earlier, I can’t change the past. I do believe though that knowledge is power and, that by ensuring I get right screening, I can minimise my risk of developing another cancer in the future.

What I have learned….

Dealing with a chronic disease forces you to develop a certain superhero strength…but that’s not to say that there aren’t difficult days or days where I feel so overwhelmed by it all that I don’t know how I going to make it through the next bit of treatment. Cancer will change me, but how is not yet fully clear. I’ve been told that I am so strong to be able to deal with everything that I am going through ………personally I don’t think I’m anything out of the ordinary. I think we all have superhero strength within all of us. It’s like the saying goes: ‘you don’t know how strong you can be until being strong is your only option’.

Cara works as a buyer in the womenswear department of a major UK retailer. She volunteers as a Cancer Research UK Campaigns Ambassador and claims to have an unhealthy addiction to travel literature and anything travel or adventure related! You can follower her on Twitter @Caraeliz24.