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.

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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

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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?

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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)

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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.

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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. 

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Life – but not as you knew it: Living with Post-Traumatic Stress Disorder

A couple of years ago, we were lucky enough to be introduced to Greig Trout, a two-time cancer fighter who is currently travelling around the world, getting his mojo back.  Greig is followed on Twitter by thousands who virtually keep up with his adventures. While we admire (and are hugely jealous!) of Greig’s amazing travels, we also really appreciate the honesty he’s shown in talking about the mental health impact of his cancer diagnoses. In our latest blog, Greig talks about the insomnia, depression and post-traumatic stress he’s had to cope with since he finished his last treatment.  None of these things get talked about enough and many people diagnosed with cancer feel like there’s something wrong with them when they don’t ‘bounce back’ to their pre-diagnosis selves.  Take a read below – we’d love to know what you think. You can tweet us on @shinecancersupp or email us at info@shinecancersupport.co.uk


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Greig on his travels

 

Anyone who has survived cancer will tell you that there is never a moment where the doctor turns to you and declares “you are cured”. To my knowledge that didn’t happen when I survived cancer as a child and it certainly didn’t happen this time round as an adult. Every six months you are simply told “all is looking good, I’ll see you in another 6 months”.

I was first diagnosed with cancer as a seven-year old. I had a stage IV Wilms tumour. It was pretty far gone and I had tumours in my lungs, my arteries and my kidney. As well as having my kidney removed, I had extensive chemo and radiotherapy. I was very lucky to survive when many others on my ward didn’t.

My worst fear came true at the age of 30 when I was diagnosed with bowel cancer. I couldn’t believe it. My mum had always told me that I’d had my tough time in life and that it would never come back. Perhaps rather naively I believed her.

Getting cancer as an adult was a completely different experience to that as a child. The only things I remember about being ill as a child are being sick all the time, losing my hair and the smell of the chemo. I don’t remember ever worrying immediately afterwards whether it would come back or not. People would say how brave I was but in truth I just had no idea what was going on.

As an adult I completely crumbled both before and especially afterwards. When I was ill I always believed I would get better but when I was better I didn’t believe that I was. I liken it to climbing Everest only to get the top and then suddenly having all your ropes and safety equipment taken away. I was gripped by fear. Fear of the cancer coming back, fear it hadn’t actually gone, and fear that I had very limited time.

This fear led to a whole assortment of issues. I suffered from insomnia, spending most nights staring at the ceiling first just worrying about cancer and then about pretty much everything else. I then developed severe eczema on my face and body and, when I did sleep, I suffered from night sweats. I was highly emotional and lost all my confidence. I felt like a glass filled to the top and just one drop would send me over the edge.

The worst thing about all of this was that I hated myself for feeling this way. Wasn’t I supposed to be filled with pure elation and with a new love of life, like all the cancer survivors I’d read about? I was certainly grateful but happiness seemed to elude me. I’d gone from someone who was confident and enthusiastic about life to someone who didn’t even want to leave the house. When I saw friends they would often comment on my skin or how tired I looked. It was tiredness that led me to finding out I had cancer, so each time someone said this all I heard was “Greig, you still have cancer”.

I honestly thought I was losing my mind. Cancer was all I thought about. I tried different forms of therapy and eventually resorted to anti-depressants. The relationship I was in then ended; looking back perhaps shouldn’t have come as a surprise.  I wasn’t the man she fell in love with anymore.

It wasn’t until I chanced upon an article in a women’s magazine that it occurred to me that maybe everything I was feeling was actually normal. The article was about the singer Kylie Minogue. Kylie had survived breast cancer and in the article she said that there wasn’t a day that went by where she didn’t think about cancer. Perhaps selfishly, this made me feel better. It seemed I wasn’t alone in thinking this way. I had read so many books where people proudly claimed that cancer was the best thing that ever happened to them. This was the first thing I’d read which I related to.

It took my doctors a long time to use the term Post-Traumatic Stress Disorder for my mental and physical condition. I had always associated PTSD with the military and war so I’d never associated it with cancer or illness. This seems ridiculous now considering it is all in the title; ‘post-trauma’. It doesn’t matter what kind of trauma it is.

My issues with PTSD have been worse than both my cancers put together. When I was ill I always had hope that I would be okay but that hope quickly vanished when I was better and it was the worst feeling in the world. Without hope I was lost.

I’m currently on an around the world trip and it’s my on-going experience with anxiety and PTSD that not only prompted me to take it, but also to share my story. I wondered how many people out there hadn’t read that article about Kylie and I wondered how many people felt like I did.

The good news is that a feeling of fear and anger after cancer is completely normal, and the anxiety can be controlled. I have received hundreds of emails from people around the world who have gone through exactly the same thing.  I found that simply writing a list of things to look forward to helped me to overcome my fear of the future. Within a couple of months of writing my list I started to sleep again and my skin cleared up. I started to feel excited about the future instead of fearing it.

Cancer is still my first thought of the day but I can now turn my thoughts around to much happier and optimistic ones. I have found that doing things you enjoy is the best medicine of all. You don’t have to travel the world but simply do some thing that makes you happy. Watching the sun go down or having a cup of coffee while watching the world go by are still my most favourite things in the world. I just try to do them more often now.

The main thing people should know who are also going through this is that you are not alone and that there is hope.

You can follow Grieg on Twitter at @101Greig. You can also follow his adventures of 101 Things to do when you Survive on Facebook here

If you need further help and advice to cope with anxiety, depression or PTSD, you may find the following links useful:

British Association for Counselling and Psychotherapy

Mayo Clinic blog on PTSD and cancer

Depression and Cancer on Cancer Research UK’s website

What happens at the Escape?

Between Jan 29th and February 1st, Shine ran our second Great Escape. For those of you who don’t know, the Escape is one of our best events – a three and a half day get together for young adults with cancer. We take over a hotel, we hang out, we talk about all the stuff we don’t usually get to talk about (like dating, depression and infertility) – and this year we hit the karaoke hard. You can see a video of our 2014 Escape here.

One of our Escapees, Minh, has written a bit about his experience at the Escape. Take a read – and get ready to sign up for Great Escape 2016!

2015 Escapee Minh Ly

2015 Escapee Minh Ly

The Lead Up

I began writing this as I sat on the train to head down Bournemouth for the Shine “Great Escape”. I’ve been in remission coming up to 8 years now and have pushed it to the back of my mind quite well. I can’t help but feel scared about spending four days talking and hearing about the subject cancer. I fear bringing up the past.

Why then, did I decide to go on the Escape? Well the fear didn’t really occur to me when I applied! Looking back on my application, I put that “I would like to spend time with people who have and are going through similar things that I’ve been through, particularly in my age range”.

I’d been to a couple of the Shine meet ups in London where I had met a few of the other “Escapees”. To help everyone get to know one another a little, we were all asked for a photo and a few paragraphs about ourselves to circulate. And to get us talking, a private group on Facebook was set up for us. It seems that I wasn’t the only one feeling slightly nervous.

I wasn’t sure what to expect, but with clear skies from the window of the train, I hope for it to stay like this for the walk on the final day!

The Escape

“What happens at the Escape, stays at the Escape!” – an Escapee, 2015

The whole experience and organising was great! Shine knows not to jump into the heavy topics on the first day, with everyone tired from travelling and new to one another, so they ease us in with introductions, let us get to know each other, have us do magazine cutting collages, and share our first dinner together. It was a very warm welcome.

The following days, a number of different sessions were run, some for everyone and the others in parallel, allowing the Escapees to choose the sessions that was more relevant to them. I’ve only been to the standard conference-type events, where you sit in an hour long session just to hear a couple of people talk, so that was what I thought the Escape would be like – but it wasn’t. Instead, there would be a short talk on a topic and then some form of interaction, whether that was breaking away into smaller groups for a bit of discussion before feeding back to the group as a whole or individually.

For me the topics were interesting, thought provoking and sometimes hard-hitting.  I particularly found myself nodding (well inside my head!) to a lot that was said in a session about Post-Traumatic Stress Disorder (PTSD). I’ve bottled a lot up and not really spoken about cancer until it’s too late and I have some form of breakdown. This session told me that I’m not the only one having trouble after remission and also that this can happen not just straight after treatment but many years later.

There was a lot to take in over the four days and I didn’t get time to process it all during the time away. There is so much going on, but its not always full-on; there are plenty of tea and coffee breaks (much cake included!) and you get free time to explore Bournemouth, the beach (5 minutes away), chat with others or just relax in your room. In the evenings, to take your mind off it all you could play a bit of bingo (with a variety of alternate bingo number calls) or partake/listen to the rest of the gang hitting up the mic and doing a bit of karaoke.

There was a sadness to be leaving the others at the end of the Escape, but I also felt ready to go back to my life, and ready to take action on the next steps.

The end of the Escape, but the start of moving on.

During the Escape, I thought about what I was looking for, why I came to the Escape and what I really wanted. This kept changing from session to session, day to day. After the first day I was sceptical about whether I would get anything out of the Escape as my mind seemed so lost and confused.

So what did I get? Firstly, I got the realisation that I need to talk about what’s happened to me, to relive it and stop burying it in the back of my head, whether that be by writing a personal diary, blogging ,or talking to a counsellor. I will never be able to get rid of the memories of being ill, but everything I learned at the Escape will help to dampen the effect it has on me when it suddenly crops up in my head.

Second, in the other Escapees, I’ve found friends who understand and who I can talk to when it feels like there is no one. Everyone is very supportive of one another and even after the Escape that has continued online.

Overall I feel good! I’ve had a bit of weight off my shoulders and though I’m not sure how long this feeling will last, I now know what needs to be done.  I think this is the first time that I’ve been in a positive mind-set about my cancer since I got into remission.

What people get out of the Escape will differ depending on their experience, but one thing is for sure: you will meet a fantastic set of people. The Escape was full of laughs (and some tears) as well as fun, and amazing people. It’s something I needed and something I will never forget. Thanks Shine and big hugs to the Escapees of 2015!

Minh Ly is a member of Shine’s London network.  He was treated for lymphoma 8 years ago and is in remission.

Life – but not as you knew it: Coping with infertility

In many cases, cancer treatment affects fertility.  Here at Shine we know that (a) health care practitioners don’t always deal with fertility and cancer issues very well and (b) questions about fertility can be one of the toughest things to deal with after a diagnosis.  Shine’s 2012 survey of young adults with cancer found that a whopping 50% of people didn’t feel that they’d been adequately supported to preserve their fertility prior to starting treatment.

In our latest blog, Rhian Jenkins (who also coordinates Shine’s Cardiff network) shares her story of diagnosis with ovarian cancer at 25, and how questions about her fertility have impacted upon her.

If you’d like to chat to others about your experiences, why not request to join Shine’s private Facebook group? We’ve got 400 men and women chatting cancer there – we’d love to see you.


Rhian Jenkins

Last week I discovered that I have gained five unwanted, un-shiftable pounds. As I stood in the tiny room at my GP’s surgery, my toes gripping the scales, I hastily added two inches when the nurse asked ‘height?’ in the hope of achieving a more desirable BMI.

The bad news: The nurse didn’t believe me and instantly had me standing flat-footed against her height chart while I mumbled something about wearing platforms last time I was measured.

The good news: Not even the most furrowed-browed of nurses tells the only twentysomething in menopause clinic to eat less cake.

I was 25 when I was diagnosed with germ cell ovarian cancer. At first, I was thought to have a cyst and, reassured by everyone’s affirmations over my general health and my age, I set off for an ultrasound expecting to hear what statistics would have me believe. The walls in the waiting room were plastered with posters on nursing and the chairs were filled with expectant mothers. As I fleetingly fretted over losing my fertility to a benign condition, I was ill prepared to be plunged into a world of tumours and treatment decisions.

The nature of my cancer and treatment left little chance or time for debate regarding fertility preservation. I began chemotherapy a week after diagnosis in the vain hope that my remaining ovary would jump back to attention once treatment ended. The almost poetic irony that the very ‘things’ that were meant to be a source of new life were on a mission to kill me was not lost on me – I tried desperately to see the funny side.

At the beginning of treatment, when your mind is preoccupied, it can be difficult to discern the importance of losing your fertility. At that point, it’s just another potential ingredient in a monstrous, scary, side-effect sandwich. Every time I tried to brush aside conversations about the possibility of infertility and claim I wasn’t that bothered, my consultant reminded me that ‘our aim is that one day it WILL matter to you.’ It seemed like something that was so far away, so hypothetical, and so disconnected from anything I was going through that it seemed an absurd thing to worry about. It was only when the twelve month post-chemo bell rang and I gained the official title of ‘menopausal’ that I began to realise and, dare I say, resent how different my life looked because of cancer. I sat once again in the same old waiting room, this time to collect my prescription for hormone replacement therapy (HRT).

Throughout treatment I vowed that if I couldn’t always be positive, keep my chin up, or stay true to any of the other clichés often demanded of cancer patients that I would, at the very least, remain compassionate towards others. I didn’t want my own cancer-filled universe to consume me. I didn’t want to become bitter or maudlin and I tried hard to avoid asking ‘why me?’ I placed a great deal of importance on not feeling sorry for myself and got on with what had to be done. Why then, a year after the hardest part of it all, was I feeling so cheated? I felt like a fraud every time I clicked ‘like’ on the scan pictures of acquaintances that appeared on my Facebook newsfeed.

Speaking about fertility is difficult and I guess it’s hard to grasp what it’s like unless you have been through the rigmarole of cancer treatment and losing your fertility. When I try to engage with friends who haven’t experienced cancer they usually look perplexed and cut any potential conversation short with an exclamation of ‘but that’s the least of our worries, right!’. Being fortunate enough to have the luxury of an infertility ‘issue’ combined with the fact that you shouldn’t be menopausal in you twenties is confusing. The turmoil and guilt I feel every time I acknowledge that maybe I’m not OK with the hand I’ve dealt can be hard to deal with.

It’s now two years on from my diagnosis and, like my scars, the issue of fertility is something that serves as a constant reminder of my disease. When I catch myself daydreaming about a future it is usually the future that I thought I would have. In my pre-cancer naiveté I never expected fertility to be a hurdle I would have to overcome. It was certainly never something I thought I would have to ‘work at.’ Instead, I am learning to be comfortable with the uncertainty the future I have been afforded while also learning to be excited, instead of daunted, by the possibilities of adoption, surrogacy or even egg donation/IVF.

Rhian lives in Cardiff and coordinates our Cardiff network.  She’s currently getting ready to go on Shine’s 2015 Great Escape!

Life, but not as you knew it: Living with dying

Kate Granger is a 33 year-old doctor from Huddersfield who is into cooking, baking and swimming. She’s also terminally ill with sarcoma.  If you’ve never heard of her, you’ll want to go away and Google her (as soon as you finish reading this, of course!).

Kate travels the country speaking about the importance of compassionate care, all the while managing an illness that has tried to slow her down. Her campaign to get medical staff to introduce themselves to patients (#hellomynameis) made 56 million impressions on social media last year and aims to ensure that we maintain and grow the human connection between patients and staff.

We are hugely honoured that Kate has written this weeks’s blog.  In it, she tackles the tough but vital issue of how she continues to live while she’s dying, the plans she’s made for her funeral and where she’d like to die – but also all the things that she’s enjoying about life.  We’d love to know what you think – drop a comment at the end, or tweet us @shinecancersupport or check out our website which has more info about the support we offer young adults with cancer.


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Kate Granger

“So I’m going to die then?” This was my typically ‘face things head on’ reaction to the devastating news that my cancer was one of the most aggressive type of sarcomas known to humanity and there was no hope of achieving a cure. The tiniest, gentlest nod came back from my consultant oncologist, signalling that I was correct in my interpretation of the information presented to me. That conversation occurred just over three years ago. A huge amount has happened in that time and I have definitely, to coin a phrase, been living life to the full. But I have never shied away from the fact that I’m dying. I’ve thought about it, accepted it, planned for it and prepared those closest to me for it as much as I can.

But you might ask how, at the age of 29, can you just accept your imminent mortality? Being a doctor definitely helps. Death to a geriatrician is a familiar concept – I’ve been certifying the deaths of patients for 10 years; attending cardiac arrest calls and spending time with the palliative care team to develop my specialist interest. All this forced me to consider my own death and think about what a good death would look like in my own world long before illness came knocking at my door. Medical training has also helped me to evaluate the clinical evidence and to understand the prognosis statistics, which all helps with acceptance and pragmatism.

One of my first actions following diagnosis was to ask my husband to phone a solicitor to draw up a will. I’d never thought about making a will; why would I? It was always one of those ‘must do’ things that get pushed to the back of your mind.  A few years ago my husband’s uncle died without a will; it caused endless legal problems and I didn’t want to burden my family with that after my death. So it was done; a relatively simple will was drawn up, signed and sealed.

The next step in planning for my death was to discuss the ever emotive topic of resuscitation. I was crystal clear in my mind that I wanted a Do Not Attempt Resuscitation (DNACPR) form. There was absolutely no doubt about it. I had this strange sensation that I was discussing one of my patients rather than myself as I had the conversation with a slightly stunned consultant. I guess it all comes back to that concept of ‘a good death’. No amount of cardiopulmonary resuscitation was going to cure my cancer and I have ambitions for a peaceful death at home, not a medicalised one.

I then spent many hours while I was unwell, as a consequence of my palliative chemotherapy, writing letters and cards to my loved ones. I made a memory box for Chris, my husband. So many tears were shed writing birthday, Christmas and anniversary cards to a Chris of the future who will be living his life without me. I made a memory book for my nephew and niece who in all likelihood won’t remember their Aunty Kate to illustrate something about my life and my values as a person. I planned my funeral in intricate detail to ensure the event will represent me and be a true celebration of my life.

I try not to think about the very end of my life too much. I would dearly love to die at either my own or my parents’ home, but I’m also well aware that my symptoms may become too difficult to manage in the community and a hospice or even hospital admission may be become necessary. My biggest fear is developing a bowel obstruction which is a distinct possibility given the distribution of my cancer, but it is something I cannot let myself dwell upon too much. I’d like my pain to be as controlled as possible but I would really like not to be too sedated to enable me to interact with my friends and family for as long as possible.

Strange as it sounds I have even chosen the music and candles I would like to have when I’m too ill to get out of bed. I’ve also picked out the books I’d like my mum to read to me almost as a comfort blanket childhood memory. I hate the thought of being too unwell to look after myself and becoming  dependent on others for personal care but I know that time will in all likelihood come.

And now all that planning, thinking and doing is done, I can park it all at the back of my mind and get on with living in the now. One day at a time is my mantra. Each challenge as it comes. When I was diagnosed my professional ambitions to become a consultant were stolen by the cancer. But a couple of weeks ago I set foot on a ward as an Acting Consultant having defied so many odds. I never thought I’d see my niece born and have those precious new-born cuddles but a few weeks ago I did exactly that. I never thought I’d hear my youngest nephew say “Aunty Kate” but he did just a few days ago. No one can ever be sure what is around the corner so it is with some determination that I keep looking forwards, not allowing my dreams to be stifled because of the Big C. But when the time does come to die I’m also comfortable in the knowledge that I will hopefully achieve a peaceful death surrounded by my family and friends.

Kate blogs at http://drkategranger.wordpress.com/.  She’s written two books, The Other Side and The Bright Side, both of which can be bought here.  She tweets as @GrangerKate

Life – but not as you knew it: Just the Two of Us

Having cancer is tough. Supporting someone with cancer can be just as difficult.  So what do you do when you’ve got to do both as a young adult?

In our latest blog, Charlotte shares her story of coping with cancer twice in four years: first, when her husband was diagnosed with Hodgkin lymphoma and then, a few years later, when she was diagnosed with non-Hodgkin lymphoma.  It’s a rare situation but it’s not unheard of – and across Shine we know a few couples who have had to deal with a cancer double hit.  Frank and honest, we’re sure you’ll be able to relate to Charlotte’s thoughts on the changes that cancer brings.

Please feel free to share on Facebook, Twitter or your blog!


Charlotte and Neil

“I love you”.

When you fall in love and share those three little words with someone, life is meant to be happy and full of dreams. But there are three other words that can change your life forever. Your dreams shatter into a million pieces and vanish beyond reach. Those three words are, of course, “You have cancer”.

Any young adult with cancer would wonder what they did to deserve a potentially deadly illness at a young age, and would worry about what the future holds. But when both you and your husband have to hear those words, the world comes crashing down and is never the same again.

This is what happened to my husband and me. Neil was diagnosed with Hodgkin’s lymphoma in 2009 aged 29, and had a recurrence in 2010. I was diagnosed with non-Hodgkin’s lymphoma in 2013, aged 32. Neil had 6 months of ABVD chemotherapy but then went on to have further chemo, a stem cell transplant and radiotherapy. I endured an intensive course of RCODAX/M-IVAC chemotherapy, a high-dose regimen.

When you take your vows, ‘in sickness and in health’, as we did in 2007, no one expects them to be tested to the limits until you are in your late seventies, if at all. The reality of what our relationship has become, with one another as well as other people, is a far cry from what it should be at our age. On the one hand I wouldn’t have wanted to share my cancer experience with anyone else. I feel blessed to have met someone who has stood with me through my darkest days. It is great that we truly understand how each other feels and that we can fully empathise about the effects of chemotherapy. We have shared the highs and lows, laughter and cancer jokes, and cried many, many tears. However, it is not what we wanted from our relationship. We had dreams of a family, a new house and successful careers – what every young couple wants for their future. But our lives are a far cry from this and we have been left feeling like we live in a bubble, looking in on people who are living our dream.

When we told friends and family about Neil’s diagnosis it was a shock to all of them. Some tried their best to offer support while others struggled with what to say and do. One of the hardest parts for me was that, as people rallied round Neil, no one asked how I felt. I tried my hardest to be the strong one, to look after Neil and to hold down my full-time teaching job. As Neil recovered from his treatment we were unsure how to express our feelings to other people and found it easier to not contact people at all. Everyone’s life was moving on and ours was stuck on pause. Then we were hit again; when I was diagnosed, it was Neil’s turn to juggle a job and to look after me.

Disbelief is the only word I can use to describe that day. Dealing with Neil’s cancer was hard enough but, with me, people were lost for words. They couldn’t find the right words to say so they often didn’t say anything at all. To the outside world that may have felt like the best strategy but being on the receiving end made me feel alone and isolated. Some friends stuck around to offer their support while others sailed off into the distance.

We have watched friends and family get married, have children, buy new houses and new cars, get new jobs, and go on holiday. We have tried our best to share these happy moments but they have always been tinged with sadness and a bit of jealousy. Due to the side effects of our diseases and treatments we have had to make adjustments to our jobs and career plans and we can’t afford the bigger family home we were hoping for. The biggest loss for us is children. Before my diagnosis Neil and I went through IVF but were unsuccessful. Five attempts later we had to walk away empty handed, emotionally and physically strained, and our pockets full of debt.

I survived my cancer diagnosis with Neil by my side and although cancer has changed the usual elements of our relationship it has bought us closer together. Neil was there every day to share a hug when there were no words to say. We have an unbreakable bond, we hold each others’ hands tightly and we are thankful that we have each other. Our relationship is one of love and trust. With our treatments finished, now is the time to bring back some fun and sparkle into our lives. Neil and I are in this journey for the long haul. We may not be able to have the same dreams as our friends but we can make new dreams that are meaningful to us.

Charlotte lives with her husband Neil and their dog Willow.  She hangs out with the Shine crew at Shine Dorset meet ups. 

Life – but not as you knew it: Talking it out

A cancer diagnosis changes everything.  Whatever cancer you’re dealing with, whatever treatment you’ve had (or are having), adjusting to life after you hear the words “You’ve got cancer” are never easy.  In our blog below, Viv Wilson shares her experience of cancer treatment and how valuable counselling has been in helping her to cope with all the changes she’s experienced.

At Shine, we know how important the right psychological support can be. We also know that less than half of all younger adults facing cancer get offered counselling – and that’s not good enough.  Many hospitals offer free counselling for people going through cancer treatment. If you think you’d benefit, ask your consultant or clinical nurse specialist for a referral. And remember that Shine’s meet ups  are a great way to meet others who know what you’re going through.

Talking it Out

Guest blogger: Viv Wilson

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I was diagnosed with widespread, high grade DCIS (ductal carcinoma in situ) in my right breast in June 2012.  At the time, I was a 42 year-old single mum with twin teenagers.

My mum had breast cancer at 45 and later died of pancreatic cancer.  As the same thing had happened to her mum, I went for genetic testing. As it turned out, I don’t carry any of the known breast cancer genes but I decided to have both breasts removed as a precaution. I asked the surgeon to give me temporary implants so that I didn’t have to be flat chested.  I had a bilateral mastectomy and my new breasts looked great.  But ten days out of surgery I developed a massive infection in my left implant and I had to have it removed. In May 2013, I had the right one removed as well.  It was then that my world crashed around me.

The whole reason I had asked for temporary implants was to avoid being flat chested. To end up like flat chested anyway, after all the surgeries, was a real shock.  I just couldn’t accept the way my body looked.  My stomach stuck out beyond where my breasts should have been which made me really upset.  I felt like I looked pregnant and had I nightmares about getting dressed. I also hated the “softie” breasts that the nurse had given me. Putting them in my bra was just a reminder of everything I’d been through and they often moved around so much they ended up under my chin rather than on my chest!

After my diagnosis and surgeries, I often felt that I couldn’t quite be myself around my family and friends. I am happy and jolly by nature and I didn’t want that to change, but lot of my time seemed to be spent looking after the feelings of everyone else rather than my own.

I wasn’t offered any counselling after my mastectomy.  I did speak to the breast care nurse at the hospital, who was fantastic, but I always felt like I was bothering her, as she was so busy. I felt cast adrift.

It was only after I had the right implant removed privately that I found out about a counselling service that was offered at our local hospice.  I was given the number of the counsellor and decided to give them a ring.  I was feeling so low that I didn’t really have anything to lose.  Counselling is part of my own job so I also knew what it entailed and it didn’t frighten me.

I have always suffered with depression, anxiety and panic attacks but until the diagnosis I was coping with things much better.  Having gone through cancer, it reared its ugly head again and I felt like I was back to square one.  There was so much to think about: Why did this happen to me?  Will it happen again? How do I feel about my body now? How do other people view me?  Do I want reconstruction?  What happened to the me I used to be? The list of things going round in my head was endless.

When I started the counselling, I found that I really needed to talk over the traumas I’d been through, from having weak veins and having the nurses spend a good couple of hours every day trying to get 4000mg of antibiotics into me, to what having no breasts meant to me and how I was going to recover.  But one of the most valuable things for me about having a counsellor is that it is my hour to say what I want to, however I want to.  I have a chance to talk about my fears and worries in a place where I don’t feel judged and I don’t feel as though I’m are going to offend anyone.  To have that release once a week was – and still is – immense.

I have been able to talk through all of the issues I have with the things that have happened.  Although the counsellor doesn’t try to give me solutions, she helps me to work things out myself and has made me realise that many of my thoughts and feelings are normal.  We have also talked about the loss of my mum five years ago and my feelings about how things might have differed had she been here.  There is an endless pot of emotion to wade through or at least that’s how it can feel sometimes.

If someone had told me a couple of years ago how this experience was going to affect me, I wouldn’t have believed it.  I haven’t got to the point where I’m ready to move away from counselling but luckily I’m able to keep going until I feel ready to stop.  Counselling isn’t for everyone, but through it, I have been able to discover who I am and work out where I fit into the world again. What it has also done is to help me to accept who I am now and that this body is my “new normal”.  I have taken myself off the waiting list for reconstruction which feels like a real step forward in accepting where I am today.

If you feel it would do you good, give counselling a go and see if it helps.  Go in with an open mind and get out of it what you need. After all it’s your life, your body and your future.

Viv blogs at http://vivsmiles.wordpress.com