Meet Neil: Shine’s newest employee!

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


IMG_0763

Good times!

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

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

IMG_0765

The scar from my operation for medulloblastoma

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

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

 

IMG_0762

My family have been very supportive of me

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

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

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

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

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!

Improving treatment and support for young adults with cancer in the UK and Europe

What a full on weekend!!

jonathan-smith

Jon, Shine’s Fundraising & Comms Officer represented Shine at YCE’s Annual Meeting together with Rachel, one of our fabulous Network Leaders!

Together with Rachel, Shine’s North East network leader, I’ve recently returned from Youth Cancer Europe’s Annual Meeting in Vilnius, Lithuania!! We were so grateful to have met everyone and to have been a part of all of the important discussions that were held.

To be honest, I was very nervous beforehand about going…with my dodgy eyesight I’m not the most confident traveller and I wondered how my anxiety and fatigue would hold out. I find meeting others who’ve been affected by cancer to be really helpful, but big events can drain my steroid induced energy (Shine Camp and the Great Escape were amazing but I regularly had to pull back as my symptoms hit home). My friends are used to me having to take timeout but at the meeting I hoped I’d be able to contribute as much as possible, represent Shine, and bring back the expertise that was shared.

YCE’s website outlines their aims:

“Together we can help shape European policy, collaborate in and promote research, fight for better access to care, for better treatments, better conditions and help fix disparities that exist across Europe for young people fighting cancer.”

And they have a great tag line too: “Giving patients and survivors a voice in Europe”.

youth cancer europe

Inspiring speakers at YCE’s meeting

At first, I wasn’t sure what issues young cancer patients in Europe face, or what disparities there are between countries, but the weekend proved a crash course in information, and greatly improved my understanding of the importance of policymaking too.

After cancer in my early 20s and through my work at Shine I’ve become well aware of the need for care to be tailored more to the lifestyle of young adults. I had some idea how government and industry policy influenced care, but at the meeting I was shocked to hear some of the issues that people faced getting access to any care, let alone care tailored to their age! It was inspiring to hear from the organisations working to support younger patients in countries that are still developing systems to reflect young people’s needs.

Many people at YCE were first diagnosed as children or teenagers and many of them are still suffering the impact as young adults. The kind of issues that we explored together are issues I only started going through in my late 20s – but that I’m still struggling with 10 years later. Things like anxiety and living with uncertainty, living with the after-affects of treatment, dating when most of my friends are already well into stable partnerships, the thought of children when everyone around me already has them, and trying to get a stable career when friends have been in theirs for years! Being at the meeting really made me see how the cancer care pathway has to support people as they leave childhood/teenage years, as well as people first diagnosed early in adulthood! As the demands of life change the impact of cancer changes too.

working after cancer

Chatting through issues about working after cancer in a breakout session

The disparities between countries in terms of access to care became very clear over the course of the weekend, as did some of the practices that were working most effectively. Being at the meeting also made me realise how fortunate we are in the UK to have the NHS. Of course, many of us, including myself, have experienced problems with how NHS services work for younger people and know that there’s room for improvement in terms of specific types of care and in coping with the after effects of cancer. But at the meeting I heard examples of countries where cancer patients have to raise funds for each scan, as well as any treatment that may follow. Processes of diagnosis and referral are often not as efficient as they could be and patients often need to research treatments themselves. While there may be times when we have to research our conditions, fight for them to be tested or argue to access to certain treatments, for the most part we do trust our NHS professionals to make decisions in our best interest.

It doesn’t matter how or when we got here as young adults who are living with cancer, all of us need support to help us live as normal lives as possible. People who haven’t felt their bodies failing them due to cancer may find this difficult to understand. Everyone faces tough things growing up, but a serious illness adds another dimension. It makes it more difficult to live that “normal” life that all your friends appear to be living.

IMG_7196

Prioritisation session for the weekend

One thing the weekend helped me to realise is that change doesn’t need to be either local or national but that together (there were 23 countries represented at the meeting), we can create bigger and more meaningful movement for all. In order for the needs of young adults to be met, we need to improve how we communicate about them to decision-makers. We also need a solid understanding of the policies in our own countries that shape access to treatment and funding for research and new therapies.

As someone who’s had a survivable cancer, I feel a sense of responsibility to increase

young adults with cancer

It wasn’t all work! Rachel takes in the view with a glass of wine!

awareness of what I have experienced so that others going through it in the future can have care that reflects their stage in life. Working together with YCE will allow Shine and the other participants to better examine and share practices, support others, and build a voice so that we can have a say about decisions made for us. Cancer patients have power and, if we are knowledgeable enough about how health systems work, we can speak on behalf of the 210,000 young adults currently living with and beyond cancer in the UK, to influence those decisions.

Jonathan is Shine’s Fundraising and Communications Officer. Why not sign up to this blog (see the button at the top!) or follow us on Instagram @shinecancersupport

It’s Lymphoma Awareness Month – Meet Ceinwen!

September is Blood Cancer Awareness Month so we thought this was a great time to share the story of one of our founding Directors, Ceinwen.

ceinwen-emma

Ceinwen (right) with Emma at Shine’s 2016 Great Escape

Diagnosed with Stage 4b diffuse large-b cell lymphoma in 2010, Ceinwen now runs Shine with Emma (look out for her profile soon for #BreastCancerAwarenessMonth) and heads up our fundraising activities, as well as designing our national programmes with Emma, our other Trustees and our amazing volunteers. Having been through cancer, its treatment and its aftermath, Ceinwen’s insight and experience is key to what we do at Shine and helps to ensure that all of our activities meet the needs of young adults with cancer. Read on and please share with others!

When were you diagnosed and what with?

I was diagnosed with Stage 4b diffuse large b-cell lymphoma in February 2010.

How did you find out you had cancer?

At the end of December 2009, I was pregnant. I became really unwell and had my daughter prematurely. The doctors thought that I was experiencing complications from the birth so I don’t think they took things too seriously at first. About three weeks later, I developed such excruciating back pain that I ended up calling an ambulance and going to the hospital. They gave me antibiotics but when I didn’t feel any better the next day, I went back. I then spent three and a half weeks in the hospital seeing all kinds of doctors who were trying to figure out what was wrong with me. Tuberculosis was looking like a good candidate for a while and I remember thinking “that doesn’t sound so bad” but after a chest x-ray they realised I had a large mass in my mediastinum (a part of the body I’d never heard of before!). They also discovered I had “lesions” on my liver – at the time, I also didn’t realise how bad that sounded. Eventually, someone got a haematologist to look at me and he put all the symptoms together. I’d had night sweats, fevers, loss of appetite and unbelievable fatigue – all typical symptoms – but no one had realised I had lymphoma.

What did you think and feel when you were diagnosed?

I had barely heard of lymphoma when I was told I had it. I knew nothing about cancer and was obviously worried I was going to die. I

thumb_img_2363_1024

Ceinwen & her daughter today

was devastated and worried I wouldn’t get to see my daughter grow up. And then pretty quickly I went numb. I generally managed to hold it together during the day but spent a lot of nights panicking and crying. I was also told that I would have to stay in the hospital for six months receiving chemo and I remember wondering how my husband and I were going to manage work and a baby and cancer all at the same time.

How did the people around you react?

I think they were as shocked as I was by the diagnosis. I had never heard of anyone having cancer and a baby at the same time and neither had my friends or family. I remember thinking “Cancer and pregnancy is a thing?”. For the most part though, they rallied around. I had family and friends come to stay and look after my daughter and help my husband out. I was never short of visitors! If there’s one thing cancer taught me, it is how much I am loved. Whenever I have a bad day now I try to remember that.

What treatment did you have?

I was put on a clinical trial testing a high-dose chemotherapy regimen called R-CODOX-M/IVAC-R. I had a Hickman line and two of the rounds had 15 days of chemo followed by a recovery period, while the other two rounds were 7 days of chemo followed by a recovery period. Part of the treatment is having “IT chemo”. I remember seeing that on my treatment sheet and not knowing what it was. It turns out it is chemo injected into your spine. I was horrified! For me, that was the worst part of the treatment. I had to have it done 8 times and I’d already had a few lumbar punctures and a bone marrow biopsy by then, so by the time I finished treatment I never wanted anyone to go near my spine or back ever again!

How did you feel through treatment?

I know for a lot of people chemo makes them feel terrible, but I was so ill when I started that the treatment made me feel better. I’d been so weak that once the chemo kicked in and started to push back the cancer I felt totally different. I had a period of time where I went days without brushing my teeth or getting out of bed. To be able to get up and take a shower felt like a miracle.

What happened after treatment finished?

thumb_img_2919_1024

Monthly immunoglobulin infusion done at the hospital

For about a year after treatment, I focused on getting my fitness back. Spending six months in bed is terrible for you and I found it hard to walk for long periods because my feet and back ached. Just as I was getting back into running, I caught meningitis. I ended up back in the hospital for a month and it was then that the doctors discovered that my immune system had really taken a hit as a result of one of the drugs I’d had. My body basically doesn’t produce b-cells properly anymore so I need monthly immunoglobulin replacement therapy to prevent me from getting any more infections. Immunoglobulins are super expensive so I like to think of myself as a million dollar woman.

Tell us about your work with Shine

Shine is my and Emma’s baby! Both of us were diagnosed with cancer as young adults and we both found there was a real lack of support out there. If you aren’t a child or teenager, you get lumped in with elderly patients who may be lovely, but they don’t get what you’re going through. I remember mentioning to some people that I volunteered with how I was missing loads of work because my appointments took all day and they said “Oh, I just pack a lunch and make a day of it”. We had very different perspectives!

I met Emma at the end of 2010 and found out she had started a support group in Dorset called Shine. I’d wanted to do the same thing in London so we decided to work together. Since then, we’ve grown Shine into something bigger than we ever imagined six years ago. Our first workshop in April 2012 had about 20 people at it. Last year, our Shine Connect conference had 100. It’s been amazing to see how many people we’ve been able to reach and support. I always thought that I wouldn’t want anyone else to feel as alone as I did when I was diagnosed. I hope with Shine we’re helping to make that happen.

What difference has Shine made to you?

Apart from loving my job, Shine has also given me friends and support that I didn’t have back in 2010. I still get regular check ups, and aches and pains still freak me out. It’s good to have people I can call up to share my worries with – people who totally get it because they’ve been there. I frequently diagnose myself with other forms of cancer – cancer of the toe, cancer of the eyebrow, etc. etc. – and it’s really good to have friends who understand exactly why I’d be concerned that the bruise on my foot is cancer (and to explain why it’s probably not)

thumb_img_1219_1024

Ceinwen with some of Shine’s peer supporters at the 2016 Great Escape

How do you feel now about your experiences? What‘s been the biggest change you’ve faced?

I think it can be hard to feel positive about something so awful, particularly something that changes your life so fundamentally. All of the things I thought I would have in terms of family and career changed when I was diagnosed. I was working in international development when I got sick and I remember my doctor saying that the sort of travel I used to do wasn’t an option, at least in the short term.

thumb_img_3978_1024

Ceinwen working in Kathmandu, Nepal while pregnant – shortly before getting ill.

You can’t ever go back to who you were before, as much as you might like to. Some days, that really sucks. Having said that, I’m in a good place now! I absolutely love all the work we do at Shine and have a lot of fun. I’ve laughed more in the last six years than I did in the six years before that. Having a few life threatening illnesses does give you a different perspective on things!

If you could give one piece of advice to yourself before your diagnosis what would it be?

I remember being really annoyed that I’d managed to get so ill because I thought I was taking care of myself – I was a vegetarian and exercised a lot. Obviously I got sick anyway, so I’d probably tell myself to eat more cake.

You can read more personal profiles from Shine’s community here. Shine also has an private online community that we run via Facebook. To join, send us a request and then send a message to us through our main Facebook page. 

breast cancer

Life – but not as you knew it: Living the dream

In September 2017, a group of intrepid climbers will make their way up Tanzania’s Mount Kilimanjaro while raising money for Shine. One of those making the journey is Rosie Hellawell, a member of Shine’s Dorset Network. Rosie currently blogging her way through cancer treatment (and the alphabet) and we’re delighted she’s written a blog for us about how she’s working to realise her dream of climbing the world’s tallest free-standing mountain once she’s finished treatment.  Take a read, share, and let us know what you think. And if you’d like to donate to Rosie’s trip, please check out her fundraising page here.

rainbowwig

Guest blogger Rosie Hellawell

DREAMS: Transforming Desires to Reality Everyday through Aspiration, Motivation and scary Statistics!

Desires

Since receiving my breast cancer diagnoses in June of this year I wouldn’t say that my long term desires have massively changed. I would still like to complete my degree, find a nice guy, travel the world, buy a house….that kind of thing. Nothing too out of the ordinary. I am hoping that cancer is just a little blip in obtaining those goals and that it is actually teaching me a lot and opening up new experiences that will be useful in the future.

Reality

However, I cannot escape the reality that my mortality has massively been called into question. For the first time I feel first-hand how precious life is and how quickly it can be taken away. I see members of support groups that I am part of, incl

donkey

NED: No Evidence of Disease

uding Shine, being taken too early on an all too regular basis. So, in the spirit of coping with reality, I must now add ‘living for a reasonable amount of time’ to my list of desires. Unfortunately, as we all know there is no cure for cancer but to become a ‘Neddy’ (to have ‘no evidence of disease’) is now also up there with the best of the rest of my desires.

Everyday

There is no getting past it: living with cancer on a daily basis is no walk in the park. But having the support of others in my age range who are dealing with similar situations to me has proven invaluable.

A lot of control is taken away by this hideous disease but I choose to retain what control I do have by taking actions towards my future. This has been anything from getting involved with different support groups, trying new sports, fundraising, blogging and becoming an ambassador for awareness charities. But on a particularly overwhelming day it can mean simply writing a meal plan and a shopping list. I find everything is easier when broken down into smaller chunks. By doing that shopping and cooking that meal and freezing up portions for future rubbish days, I am once again back in the driving seat.

Aspiration

Aspiration is defined as ‘a hope of achieving something’ or finding the inner strength to achieve. As a wise man once said, (well actually it was Dave Pickles in his webinar last week!):

horse

Yes, I have just stolen his quote but it makes perfect sense! This picture speaks a thousand words to me. I refuse to let worries of failing hold me back. If I don’t try, I will never know what I am capable of and the last thing I want to do is look back at all the things that could have been if only I hadn’t let fear get the better of me. I would much rather look back at all the amazing things that I did manage to achieve.

The opportunity to climb Mount Kilimanjaro for Shine Cancer Support has come at the perfect time for me and has given me a focus to get me through my treatment and out beyond the other side. Not only will the trek itself be a huge physical and mental challenge, the fundraising and training will include targets to be met along the way. This will help with my recovery and will give me back some more of that lost sense of purpose and control.fb_img_1472033674460

Motivation

A cancer diagnoses is a pretty big motivation tool to get me off my backside and out of my comfort zone, saying ‘yes’ and taking on all the new and exciting opportunities that come my way. The fact that I can raise money for such an awesome charity at the same time is just the icing on the cake. It means that young people diagnosed with cancer in their 20’s, 30’s and 40’s will also be able to feel the full force of fellowship and shared experiences.

Statistics

Scary statistics do definitely help to motivate me. My current ‘favourite’ is that I have 43% chance of not being here in 5 years’ time. I discovered this at 3am one morning when Googling (never a good idea when experiencing steroid-induced insomnia). While I realise that some stats should be taken with a pinch of salt and that, compared to some people, I should be grateful for this figure, the stats also serve the purpose of reminding me that life is precious and none of us know how long we have left. Life can all too often be too short, so I for one am going to go out there and grab every opportunity that comes my way…. what better way to start than up the very aptly named Shiny ‘Mountain of Light’?!

Rosie is a mature social work student who lives in Bournemouth. She was diagnosed with breast cancer in June 2016 and is currently undergoing treatment.

Rosie regularly blogs about her life with cancer here and her fundraising page for the Kilimanjaro trek next year can be found here.

Bowel cancer and talking sh*t!

“So, you’re fine now, right?”

Ah, the question that often gets asked when you tell people your cancer woes! And the thing is, it’s usually asked with the best of intentions. Your friends and acquaintances want you to be fine – but ‘fine’ can mean very different things once your body has been through cancer treatment.

In our latest blog, we are literally talking sh*t!  Our writer, Pippa, shares her experiences of a bowel cancer diagnosis and treatment in her early 30s and explains what the ‘new normal’ can feel like once your insides have been through the wringer. Having trouble explaining to people what your life is like now? Please feel free to share with others and, as always, let us know what you think.


Pippa3

Pippa, during treatment

We live in a country where people are embarrassed to talk about their bodily functions, particularly their bowel movements. We rarely talk about them with our friends and family (you know you have a close friend if you do!) and we especially don’t like to talk about them with strangers, even doctors. This inability to talk about bowel movements is undoubtedly putting lives at risk and it almost cost me my life.

Bowel cancer is the third most common cancer in both women and men in the UK, and the second most common cause of cancer death in the UK, after lung cancer. Like many cancers, bowel cancer is more common in older people and screening is offered for those who are 60 or older. However, there are quite a few of us who are considerably younger who have been diagnosed with bowel cancer. As screening is only available to those who are older (and even then, it isn’t 100% reliable) you need to be aware of the symptoms of bowel cancer and talk to someone, like your GP, if you are experiencing them.

Before I was diagnosed, I experienced both a change in bowel habits and blood in my stools. These symptoms coincided with starting a new job and I put them down to stress. I was also embarrassed and didn’t want to talk to my doctor about it. I finally went to my GP fifteen months later. What finally convinced me to go? Confiding in my mum and one of my sisters. They were adamant I went to the doctor and it was actually much easier than I thought it would be to speak to my GP about poo! She referred me immediately for a colonoscopy, which is how my bowel cancer was discovered.

When you’re diagnosed with bowel cancer your life will forever revolve around poo, a subject that no-one wants to discuss! During treatment your bowels take a battering and a lot of people have a stoma (temporary or permanent) which brings its own poo challenges. I never imagined my life would involve waking up in the middle of the night and feeling a warm liquid all over my abdomen -and that liquid turning out to be poo from a stoma bag leak. Equally memorable was the occasion, soon after my operation, when I didn’t have a firm enough grip on my stoma bag as I was trying to empty it. Instead of emptying a very liquid poo into the toilet, it went all over the seat, my clothes and the floor – in fact, it went everywhere other than the toilet bowl. Happy times!

Being diagnosed with bowel cancer means you very quickly have to get over any qualms you might have had about talking about poo. Not only do you get used to crowds of people looking at or up your backside, but every appointment with consultants involves discussing your bowel movements.

Even once treatment is over, people rarely return to “normal” bowel function. The consultants like to refer to the period post-treatment as “getting used to your new normal”. For a lot of people, the final part of their treatment is having a temporary stoma reversed, which is when the bowel is reconnected for the first time post-treatment. A section of bowel will have been removed and the bowel that remains will have been affected by other treatments like chemo and radiotherapy. As a result, the speed at which poo moves through your bowel, as well as your bowel’s reaction to food and environmental stresses, will have changed. It is not uncommon post-surgery to spend a considerable amount of time on the toilet. Not only do you poo a lot, but it can also take a considerable time to fully empty your bowels. Challenges include feeling like you need to do a poo but not being able to, going to the loo, cleaning yourself up and then immediately needing to go again (referred to as clustering). No one understands the pure joy of passing a single normal poo until you have had bowel cancer!

Pippa1

A post-treatment Pippa

These challenges are all a pain when you’re at home but they present even greater challenges when you’re out of the house. Prior to being diagnosed with cancer I tried to never do a poo outside of my own bathroom at home. Post-cancer, that is impossible. In the early stages post-treatment I didn’t like to be far from a toilet because if I needed to go, I had a very short period of time in which I could hold onto my bowel. Please don’t judge if you see a person who looks “perfectly normal” rushing into a disabled toilet. There are a number of medical conditions that mean that people need urgent access to a toilet and until you have experienced incontinence you can’t fully understand how embarrassing and horrible that is. If all other toilets are busy, the disabled toilets can be your only option to avoid an accident. Disabled toilets also provide more space to move around. When you have a stoma, you need that additional room to be able to empty your bag or to replace the bag if you’re unlucky enough to have a bag leak while you are out and about.

It can be very isolating to deal with the after effects of bowel cancer and the treatments. Thanks to Shine I have met a number of fellow “Bowelies” with whom I can have frank chats about poo and all of the other shit that comes with bowel cancer!

I am really passionate about educating people about the symptoms of bowel cancer and getting them talking about their bowel habits more. People can literally die from embarrassment and that’s not right.

Pippa Woodward-Smith is 34 and lives in Southampton. You can meet others like Pippa at our upcoming Shine Connect conference on 23rd April in London.

 

 

10 ways to help a friend coping with cancer

We often post articles on Twitter and Facebook about what to say to a friend or family member who has cancer, or how you might help them. We’ve also noticed that these often get a huge number of hits! That got us wondering how the members of our growing Shine community have been helped by family and friends when they’ve been ill – so we asked them! We got some great responses and we’ve summarised them below. Have a friend in need? Take a look below and see if we can inspire you!


Message1. Let them know you’re thinking of them

“One of my friends sent me a card every week that I was in the hospital – and I was in there for a long time.  It was so nice to receive a surprise in the mail and to hear all her news.  I’m not sure she knows how much it meant to me but I’ve kept all the cards as a reminder of what a great friend she is”.

When you’re ill, sometimes just knowing that you’re still part of the land of the living is all you need. A text, a card, a phone call – no matter how brief – can make a huge difference to someone who hasn’t been out and about much, especially if you’re clear that you don’t expect a reply.  Being ill can be very lonely so knowing that your friends and family are still thinking of you can make a huge difference.

2. Cook

“A friend bought 12 homemade freezer meals at two separate points during chemo. Even though I didn’t feel like eating most of the time at least I knew there was something quick, easy and on hand for my husband and daughter. I was very touched at her kindness and effort”.

If you’re a whizz icookn the kitchen, there’s nothing quite like a homemade meal to perk up someone who isn’t feeling great. And even if they don’t feel like eating because treatment has done a number on their appetite, you might be easing their stress by making sure other members of their family have something quick and easy to eat when the hunger pangs hit.

3. Clean

cleaningNot big on cooking? How about cleaning? A lot of our Shine members mentioned that they’d had friends who had popped in to clean the bathroom and kitchen, or put fresh sheets on the bed (and do the laundry) while they flaked out in front of the tv.  There’s nothing quite like clean sheets and a nice fresh towel – and it doesn’t take very long either!

4. Hang out

“For me, I was happy just to have people to keep me company. I think as a young lad people don’t know what to say and some people found it easier to avoid me.  I was happiest when people just came round and played computer games or chatted, especially when I couldn’t do much else beyond letting them in!”

super-1138462_1920Your mate may not be up for a heavy night down the pub, but heading over to his or hers with a movie, a computer game or even a pack of cards can really boost someone’s spirits. Something that doesn’t require a lot of mental or physical energy – like hanging on the sofa – but keeps them involved in the world around them is often really appreciated.

 

 

5. Get them out and about

“I went to Glastonbury festival after my treatment and all my friends had to take it in turn to carry all my belongings and helping me hobble around. I felt guilty about ruining their fun, but in reality I genuinely felt they were happy to have me there.  This reassurance was enough for me.”

We get it – being around really sick people can be scary. But helping a friend by taking them out, even if they’re going to need extra support, can help them feel like they’re still participating in all the things that they should be doing.  Keep in mind that they might not be able to walk long distances or stay out late, but if you can pick them up and drive them to a restaurant, or help them carry their stuff without making them feel bad, you’re more than half way to making their day!

6. Entertain the kids

playground-691129_1280

Let’s face it, kids can be exhausting at the best of times. If your friend has little ones, why not take them out for an afternoon or come over and cook them dinner while your friend has a nap? If they’re old enough, an afternoon movie or a trip to the park could give your friend a much needed break.  Or invite your friend and the kids over. You entertain them while your friend chills out with a cup of tea!

7. Head to the hospital

Something that everyone with cancer knows is that it’s time consuming – and hospital appointments can take ages.  If your friend is spending more time with the nurses and doctors than his/her mates, why not offer to keep them company? Ask if they’d like someone to take them to the hospital, pick them up, or hang out in between.  Having someone to gossip to can be a great distraction from the blood tests, scans and doctor chats.

8. Walk their dog

12376834_10156672952605263_2785600398398241687_nDoes your friend have a pooch? Why not ask if you can help walk the dog a few times a week? If your friend is happy for you to do it, see if you can get a few other friends together and organise a walking roster. On a good day, your friend might just want company for the walk. On a bad day they’ll be glad to have someone do the walking (and poo scooping!).

9. Organise a treat

“One of the most helpful things was planning something nice for my husband and I to do or go for a treat on the week before my next chemo. These did not cost much or sometimes nothing at all but it was something to focus on in the rotten days”.

“My friends always organised a get together on “chemo eve”, which was lovely.”

Cancer can be expensive! Not only are you missing work, but you’re spending your money heading to and from the hospital, on parking charges, and on extra blankets and heating to keep you warm. If you’re looking for a simple way to cheer someone up, why not plan a night out to the cinema or a comedy show? Book tickets when you know they’re free and either take them yourself or organise for others to go with them. (One minor note of caution: if you can, check if there’s cancer in the movie at all. You’d be surprised how many people in movies die of cancer. It’s not what you need when you’re going through treatment!).

10. Help them celebrate

easter-eggs-lst035137.jpg-pwrt3

Having the energy for Christmas, Easter or a birthday can be tough when you’re coping with a cancer diagnosis.  Does your friend need help buying a tree or getting the decorations out? It can be hard for people to know what they need but asking specifically how their planning for a holiday is coming can open up whole new possibilities for help! Buy the Easter eggs, plan the hunt, decorate the tree, light the candles, buy the cake….the options are practically endless.

Got more ideas? What have we missed? Let us know! Comment below or Tweet us @shinecancersupp