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. 

Life, but not as you knew it: Pregnancy, cancer and lights in the dark

There is never, ever a good time to get cancer, but having to face your own mortality while waiting to give birth to a new life is especially hard.  At Shine, we know a number of families who have had to cope with cancer while pregnant or shortly after birth. In our newest blog Hayley shares her story  of coping with bowel cancer while waiting to have her son.  It’s not something you read about very often (and quite frankly cancer and pregnancy seems like something that just shouldn’t be allowed!).  Take a read and let us know what you think.


Hayley pregnant

A heavily pregnant Hayley

My car keys made a nice, dramatic sort of jangle as they crashed to the floor. My purse too, made a satisfying crunch before skidding and coming to rest against the wall.

I must have made a dramatic scene: a large pregnant woman hitting the decks like that. Voices gathered in the darkness. Can we get her into a chair? Who is she? Can you hear me?

I heard myself protesting at being given a shot of morphine “I’m pregnant! I don’t want it”. The A&E staff were harried and unsympathetic; they hovered over me attaching lines, fussing and talking. A young doctor eventually presented me with a medical book to ‘prove’ pregnant women could have morphine if needs must. I didn’t try to read it.

The pain became more bearable and the scene came into focus. The A&E consultant came to talk to me. I told him I’d had bowel problems for years on and off….they kept telling me it’s irritable bowel syndrome (it’s not, and I still think today it is Crohn’s but that’s another story). He went off to look at his computer. They took a polyp from my bowel two weeks before and I hadn’t had the results.

I watched the doctor frowning at the computer, leaning in towards it as if getting closer would make what he was reading make more sense. He sighed, and came back to me and held my hand. And he told me: it was bowel cancer. Suddenly everyone who was looking after me changed. They all looked a bit sorry for me. They talked softly. They held my hand. ‘I’m going to die’ I thought and began to cry for my children and for my unborn child. How the hell could I be 32, pregnant and have bowel cancer? The world cracked and fell to pieces far too sharp to walk upon.

I was transferred to a ward where I talked to my surgeon to be. The colorectal nurse told me to go away and enjoy the rest of my pregnancy (because once I’d been induced early and had my baby, I was going to have a colonoscopy, be scanned, have a foot of my bowel removed and thus also be removed from my baby. And they wouldn’t be sure of the extent of the cancer until after the operation). So nothing to worry about then!

The rest of my pregnancy passed in a blur of worry, pain, Co-codamol and panic attacks.

One grey, rainy Sunday I became breathless. The out-of-hours doctor sent me to the hospital to be assessed and handed me a sealed envelope to take with me. It soon became a ripped open envelope: mmmm now lets see….differential diagnoses… Pregnancy normal symptom? Anxiety? Lung mets? LUNG METS…he wrote that?

All the way to the hospital I cried. I was certain it was lung mets and there was no hope.

But it wasn’t. I had to go through an x-ray (pregnant women can’t have x-rays) and a lung perfusion scan to make sure. I remember crying and one of the nurses talking to me about her mum who had died of breast cancer but had had nine years of fight before she succumbed. She had tears in her eyes as she told me the story. She gave me a bit of hope. She was pregnant too. I often wonder about her and am grateful for the way she treated me. They aren’t all like that.

One of the hardest things to take being a pregnant woman with cancer, was having to attend a million baby scans so they could keep an eye on the baby’s growth. Every time I had to sit in that waiting room full of happy expectant couples, texting their families on their phones ‘It’s a girl’ or whatever was torture. I sat there alone and scowled at the world. They had no idea what I was going through and I wanted to shout “I have cancer!” at the top of my voice and shock them all. I wanted to share my pain. You get some dark thoughts when you are in dark places.

The wait for the date for the induction of my labour was one of the hardest I have ever had to endure. The not knowing the extent of my disease, the worry about the operation, the impending separation from my baby tortured me day and night. There was no real life, only endurance. Every minute ached, every day hurt, every week burned.

Then we did it. We went through horrendous unnatural labour to meet my third child. We called him Monty. He is beautiful and is the light of my days. In those early days and nights at home I would cradle him and cry silently at the thought of being apart when I went into hospital for the operation. He was five weeks old when the date arrived. Another heartbreak. A deep, instinctual pain of separation: mother from newborn. It hurt so much I cannot describe it. My poor husband.

But time passes, doesn’t it. We endure pain, physical and mental. We wake up, we sleep, we cry and we smile. The next day always comes. I came home from the operation after five days in hospital. I ached all over, my bowels were not working in any shape or form, but I was going home. It was bliss.

They told me I was clear. I should have been relieved but somehow the reassurances were empty and hollow. I was numb. It meant everything but I felt nothing.

The story continues. More recent MRI scans I have found something on my liver – bile ducts that have closed off. The liver specialist thinks it might be PSC. It is not good news and there is no cure. PSC goes hand in hand with Crohn’s; tests for this are inconclusive and ongoing but I am pretty sure it’s there. More darkness.

The reason for my cancer was a genetic mutation, so I was always going to get bowel cancer at some point. Without regular screening and, at some point, having my whole colon removed, I will get it again. My children will have to be tested. It is possible they could share my mutation. Dark, dark, dark.

Hayley and Monty

Hayley and Monty

What I have gained out of all this is the knowledge that I can only do what I can do. I can only fight mentally. My body, the doctors, the scans will be what they are. The course of my diseases will be as they are, progress as they wish, all beyond my control. All I need worry about is my mind and how to keep it on the right path…acceptance, hope (but I’m a pessimist), openness, the making of new friends. Friends in the dark. Friends in my dark.

When it comes down to it, it is sort of alright to be in a dark place when other people are there lighting it a little with their stories, their struggles, and their smiles. I do not feel alone. And that is the biggest gift, to sit in the dark and be surrounded by shining lights.

 

Hayley is (nearly) 34 years old,a mum of three and a primary school teacher. She lives near Norwich in Norfolk where her 6 year old, 4 year old and 8 month old – together with a dog, cats, ducks and hens – keep her very busy!

Shine has a growing private online community that you can access via Facebook; many of our members have dealt with cancer in pregnancy or shortly after giving birth. If you’re looking for additional support with these issues, please also check out Mummy’s Star, a charity that provides information and financial support to families facing cancer in pregnancy and the first year after birth.

Introducing Shine Plus One!

Shine is working to create a community for young adults with cancer in the UK and with 11 networks across England and Wales, we are getting there!  But what about the people who support young adults with cancer? The family, friends and partners who support us, worry about us and take care of us?

As Shine has grown, we’ve met more and more partners, friends and family and learned about the struggles and worries that they face when helping us to cope with cancer.  And so (drumroll please!!!) we are excited to announce the creation of Shine Plus One!

Shine Plus One has a closed Facebook group where anyone who is supporting an adult in their 20s, 30s or 40s with cancer can go to chat, complain, offload or lend support – as it’s a closed group, no one will see what you write and your comments won’t appear publicly on your timeline.  We’ve also started a London Plus One network that will be meeting up regularly.

In this weeks’s blog, Salma and Peter (both of whom have partners who are living with cancer) share their stories and explain how Shine Plus Ones came about. Take a read, join the online group and, if you can, come out for a drink!  To get in touch with our London Plus One, you can email Salma and Peter at londonplus1@shinecancersupport.org.


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Peter’s story:

Let me be frank: being the partner of someone with cancer is tough – but in my experience it’s never quite as simple as that. Clare and I had a pretty tempestuous relationship in the years leading up to her diagnosis.  Although the “Big C” certainly stopped us both in our tracks, we had existing problems with our relationship that had been left unresolved. In our case, the issues revolved around a lack of effective and loving communication, as well as all the common stuff that being a first time parent brings up – the new family dynamic and the differences in the ways we wanted to bring up our toddler. Just because Clare suddenly had cancer, the existing tensions didn’t go away – the biggest issue on our plates had just dwarfed them.

Equally as suddenly, we were forced into roles that were completely foreign to us. My beautiful, sexy, strong-willed and outspoken wife suddenly became ill. I was a jobbing actor, only just beginning to realise after the birth of my son that I wasn’t the most important thing in my life anymore. Everyone suddenly expected me to take on the role of ‘carer’. I was supposed to be supportive in every way and humble to the core. I rebelled for a long while, as I simply didn’t want to accept what was happening to both of us.

I remember coming out with stock phrases that I could say while remaining completely emotionally disconnected: “Yeah its not easy, but compared to what Clare must be going through, I’ve got it easy” or “No one expects to be hit by the brick wall of mortality at 31 – I just can’t imagine how she must feel”. The fact was though that I didn’t really know what to say to people who asked how things were going. It was too huge to actually deal with. When people asked how she was, how I was, I often just wished they hadn’t bothered, as there was nothing that anyone could say that would make the situation better. My biggest challenge at the time was accepting our circumstances. Quite simply, we were both trying to come to terms with a very unpredictable future that neither of us had ever imagined.

The idea of being able to connect with other people seemed impossible as there was no one who really knew what we were going through. There were plenty of people who said “call me if there’s anything I can do” but we both knew there was really nothing they could do. Perhaps I didn’t really want to connect with anyone at the time. Usually very outgoing and social, I found that my default coping mechanism was to internalise and disconnect from others. I found myself crying down the phone to a Macmillan volunteer one time, but that was about it. There’s never really been anyone I knew of who was our age and who had gone through what we were going through – until now and thanks to the creation of Shine Plus One’.

SalmaSalma’s story:

2009 was supposed to be great. After years of struggling in vain we were finally pregnant with our first child. Life was wonderful. Then one phone call brought us down from the top of the world and my husband Rich was told he had hairy cell leukaemia. I imagine everyone remembers the moment they find out. We certainly will never forget: it was the day before our baby’s 20 week scan.

The scan is still a bit of a haze for me. We were very happy to see that our child was healthy and growing well but as we sat there Rich feared that he would never see his daughter born, and I was utterly terrified at the thought of being a single parent without my husband at my side. It was all hideously wrong.

Following his diagnosis Rich had to stay away from people to reduce his risk of infection – even catching even a cold could have killed him.  Fortunately he could work from home, but with me about to go on maternity leave, it was a scary time not knowing if we would manage financially.  It was a lonely time for both of us as well. The winter of 2009 /10 was a harsh one and most of the people we knew had a virus at some point so they couldn’t visit.  As a hormonal, emotional pregnant woman my mind went to horrible places as I watched my husband get thinner and sicker, but if I wasn’t positive and strong who would be?  I kept it all in.

After his chemo Rich caught an infection and was put into an isolation room in hospital. He was there for most of the final two months of my pregnancy and this was a dark time.  I watched him shrink physically and saw how the isolation drained every ounce of enthusiasm from him. Each day I walked in the snow to the hospital and sat with him. I left each night when he fell asleep.

As the one without cancer it was almost impossible to shout “what about me?” but I found myself in a lonely place. I have many wonderful friends and family nearby who looked out for me and who phoned regularly, but people have their own lives, and none of them truly understood what it was like to be me.

Shine Plus One

Shine has been invaluable to our partners Richard and Clare and has provided support and an understanding community (you can read Richard’s story here).  When we met at Shine London’s Summer Picnic in July of this year, we bonded over the idea of starting a “Plus One” group that could provide the same sort of support but for partners, friends or family.

We want to offer a friendly ear and support to those out there who, like us, feel they might benefit from chatting about the real issues that having a partner or family member/close friend with cancer brings up. We want to provide a platform for people to sound off about anything without feeling judged. We want you to know that you are not alone in thinking or feeling the way that you do!

You can get in touch with us on Facebook (just request to join the group) or, if you’re in London, drop us a line at londonplus1@shinecancersupport.org

Life – but not as you knew it: Living with chronic cancer

The general perception of cancer is that you get it, you treat it, and then you’re cured. Anyone who has had cancer knows things aren’t quite so easy; cancer treatment can leave you with long-term side effects and it’s often impossible to know whether you’ve been cured or not. There are also ‘chronic’ cancers that can look to those who aren’t in the know like they’re not cancer at all.

In our latest blog, Sarah writes about living with Chronic Myeloid Leukaemia (CML), a blood cancer which requires daily treatment.  Sarah was one of the first women in the world to give birth while on Glivec, a drug which has revolutionised CML-treatment but which can have difficult and disturbing side-effects.  Take a read and let us know what you think. Whatever your health status, we’re sure you’ll agree that Sarah has an important story to tell.


Sarah CML

Guest blogger: Sarah O’Brien

I discovered I had leukaemia by accident.

I was 30 years old and was at the peak of my fitness, running 5 miles every other day and doing aerobics twice a week. I was juggling an NVQ Level 2 Gym Instructing course with being the single mum of a toddler. I had also recently recovered from severe post-natal depression after the birth of my first child three years earlier and was getting over a marriage break up. But my new boyfriend, Kevin, had just moved in with me and we had started to make plans for a future together……things looked really good.

As I had been on medication for depression it was a routine procedure to check my liver count. At one GP appointment, the nurse wasn’t sure what box to tick on the blood-screening test so she decided to tick all of them and my bloods went off for analysis. A week later I was told to go to my local hospital and have a blood test done with a haematologist. The doctor indicated that there could be a problem but advised me to go back to my GP in a month for another blood test. A couple of days after I did that, I received a phone call telling me to go to the hospital the next day. When we got to the waiting room all I could see were leaflets for HIV and cancer.

After a long wait, I was called into see Professor P. I had some more blood tests done and he checked my spleen. He asked us to return in an hour so he could analyse my blood. When we returned, he told me that I likely had Chronic Myeloid Leukaemia (CML). My world crashed around me.

Nine months before I was diagnosed, I lost my Nana to non-Hodgkin lymphoma and Kevin had lost he dad to cancer the year before, so to be told that I had cancer too was a huge shock. On the other hand, we were able to connect some dots. All of a sudden I understood why I had been a lot more tired than usual, and why I was experiencing shortness of breath when walking up stairs. I had also been getting an upset stomach and losing weight.

Having CML was described by the doctors as similar to a long-term chronic illness, like diabetes. But they also mentioned that there were treatment options such as a bone marrow transplant if oral medication did not control the disease. I was told that was very rare for a woman my age to develop CML as it mainly appears in men over 50.

I started a short course of Hydroxyurea before the long-term treatment of Glivec was started. Glivec (Imatinib) is a tyrosine kinase inhibitor (TKI). It stops the tyrosine kinase enzyme that causes the abnormality in the bone marrow that leads to the mass production of immature white blood cells. Glivec is very much the first in a new type of targeted therapy and many new treatments for other cancers are aiming to follow its design.

When I started Glivec, I often felt sick after taking it and I had re-adjust my meals. I had to have large bowls of pasta in the evening just to keep the tablets down, and if I drank cola or tea it would come straight back up. I started to gain weight and went from size 10 to size 14 within a couple of months but I didn’t feel like exercising as the Glivec also caused bone pain.

Telling family and friends about my diagnosis was difficult. My daughter was too young to understand, although she knew that I wasn’t well. Telling my dad was particularly hard as he lives in New Zealand so the distance seemed even greater, especially as we both just wanted to be able to give each other a hug. Some of my friends thought I was being selfish when I wasn’t able to socialise as much as I had done and some friendships have not lasted the distance. My most important relationship, however, has lasted and that’s with my husband Kevin.

Six months after my diagnosis I started feeling very tired. I also had sudden urges for food like donuts and noticed that smells were becoming stronger. I did a pregnancy test that was positive but when I informed the hospital they told me that having the baby would be a gamble; there hadn’t been many successful pregnancies on Glivec anywhere in the world.

We decided to chance it, and it was agreed that I would come off treatment to give my baby the best chance of survival. Everything ran quite smoothly until 23 weeks into the pregnancy. My white cell count started to rise and I was advised to restart treatment, but the lack of information on Glivec and pregnancy was stressful. We didn’t know how safe the drug was for the baby and we worried that the baby’s brain development could be affected. With so little information go on, I spent an agonising week wondering what to do, and what would be best. I eventually restarted Glivec and, six weeks before my due date, I went into spontaneous labour. Our healthy son, Matthew, was only the fourth baby born worldwide on Glivec.

Following Matthew’s birth, Glivec started to impact negatively on my life. I ballooned from a size 14 to size 22, and I found walking hard. I had drenching night sweats, joint pain, heartburn, itchy skin and felt really down. Eventually it was decided that I could try a different drug called Tasigna. Tasigna is taken on an empty stomach, so I was able to cut the heavy meal at night and, as the weight dropped off, I found getting around a lot easier.

Ten years on from my diagnosis, I am far from as fit as I used to be but I am a lot happier with myself than I was. Having lost 70lbs (five stone), I am now about a size 14. The night sweats still happen but they are not as bad. I still have days where I suffer with fatigue and joint pain and it’s known that the long-term use of TKIs can cause heart damage and diabetes. I try to watch what I eat and do some exercise when I can.

I often wonder what the future will hold for me. CML has changed my life drastically; I gave up on my dream of being a gym instructor and I often feel lost about what to do once my kids are older. I have four-monthly blood tests to check that the Tasigna is still working and, so far, I am in “molecular remission”, meaning that CML cells are undetectable in my blood tests. The only cure for CML is a bone marrow transplant, which is a high-risk procedure. On bad days, I often wish I could be cured so I don’t have to think about managing this illness for the rest of my life. On other days, though, I know I am lucky to be alive.

Life – but not as you knew it: Pregnant Pause

In our last blog, Sam Reynolds shared her experiences of living with cancer and a small child. But what if your cancer treatment has affected your pregnancy and fertility?

Chemotherapy, radiotherapy and other drugs can all affect the ability to have children. For many young adults with cancer, coping with post-treatment fertility problems can feel like yet another massive hurdle that has to be overcome– and it’s something that has to be dealt with for years after the initial diagnosis. We also know that fertility issues are often dealt with poorly by clinicians; in Shine’s 2012 survey of young adults with cancer, almost 50% of people told us that they hadn’t felt adequately supported to preserve their fertility prior to starting treatment.

Writing poignantly below, our writer tells us about her experiences of terminating a pregnancy, cancer and fertility treatment. Cancer and pregnancy is rare, and we know that there aren’t any easy answers to infertility. We firmly believe, however, that shedding more light on these experience is important. So many young adults with cancer deal with infertility quietly and on their own, struggling to make sense of what they’re experiencing. We want to change that.

To get in touch, please check out our Facebook page, website or follow us on Twitter.

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Pregnant Pause: Cancer, Termination and IVF

Three and half years ago I was diagnosed with bowel cancer, aged 30. I was also eight weeks pregnant with my first baby. The shock of the diagnosis was quickly superseded by having to make some important decisions and take many actions. Requesting to see the top specialists in the areas that I was now acutely involved in – oncology, surgery and gynaecology – it quickly became clear that it would not be possible to keep the baby if I was going to survive. The location of the tumour, and the radical surgery required to remove it, meant that we couldn’t. Having explored as many options as possible, I had a termination two weeks after the diagnosis. I remember asking my husband to write down very clear bullet points about why this had to happen; I wanted to be able to reassure myself later if doubted my decision. We were devastated.

At this point my medical team said there was a chance my fertility would be ok, as long as surgeries and treatment went smoothly. I knew that I may be eligible for in vitro fertilisation (IVF) and I was given a three-week window in which to try it before my first surgery. Despite being told there as a high chance it may not work due to my recent pregnancy and short time frame, we got four embryos for storage.

The next year was spent in a whirlwind of treatments and surgeries, dealing with the very physical and even more emotional changes required to ‘get through’ cancer. All the while I spoke as openly and honestly as I could with family, friends and new people in my life about the experience – how I, we, were feeling, and how I was looking forward to it being over.

Coping with life throughout it all was hard at times, and I felt more fragile and weaker than my ordinary self. I found other people’s good news hard to hear but desperately wanted to be ok with things. Pregnancy news in others was often the worst, although pregnant people or their new babies much less so. I asked people to email me their pregnancy news so I didn’t have to process it face-to-face, but felt guilty about having to do so. I knew I had to be rational about normal life carrying on around me but this still felt so hard. People often said ‘you’re strong, I couldn’t cope with what you’ve been through’ but if I ever wanted to ask ‘why me?’ I tried to remind myself equally ask ‘why not me?’. It’s just a shame it’s anyone.

I had to find a way to accept what was going on and what we had had to do. I remember a friend emailing, saying ‘I’m so sorry about the miscarriage’ and I don’t think I corrected her. I didn’t have the energy to explain it or risk feeling exposed, potentially judged, and even more sad.

Eventually after a third surgery I was told I was cancer-free. It is often at this point cancer survivors talk of their difficulty in adjusting to life – finding their new “normal”, one you didn’t choose or want to have to explore. Despite doing well in many ways – I am healthy again, eating well, and have made exciting changes in my career, the emotional fall out has been had the biggest impact. I feel guilty for wondering whether, had I just had cancer to deal with and not the loss of a baby, would I have bounced back better now? Be more adjusted? I just have to keep being honest with those closest to me about how we’re coping and looking for support along the way.

Being pregnant with cancer is rare but it is not unheard of – 30,000 people aged 25-49 are diagnosed with cancer every year in the UK, about 60% (18,000) will be women and a handful may be pregnant at the time of diagnosis. Another way of looking at it is cancer occurs in approximately 1 in every 1000 (0.001%)[1] pregnancies. I am aware of other people like me now – some have been able to keep their pregnancies, others not. The hardest part is knowing that you couldn’t have done anything differently. I tell myself not to dwell on what might have been but that’s hard when you’re looking at your future, thinking about how things might have been so different.

We have now been trying for a baby for over a year, and I’ve been told that I have physical issues that may make it hard to have a baby. Having just found out our first round of IVF hasn’t worked, my resilience is being truly tested and running low. Despite this, I actually feel clearer than ever about our plan for a family, and I know that we will have a family of our own one day – hopefully sooner rather than later. I hope my future involves acceptance, peacefulness and a happy heart. Isn’t that just what everyone wants?

 

[1] http://www.cancer.net/coping-and-emotions/sexual-and-reproductive-health/cancer-during-pregnancy