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

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


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

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

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Guest blogger, Cara

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

A little about me……

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

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

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

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

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

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

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

What I have learned….

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

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

 

 

 

 

 

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.


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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!

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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.

 

 

The Internet: The good, the bad and the ugly

“Don’t go on the Internet”.

These are the words of many doctors and nurses that many of us hear when we’re first diagnosed. The Internet, of course, contains lots of useful information but sifting through everything that’s out there to get to the good stuff isn’t easy. In our latest blog, Sarah writes about the pluses and minuses of being a cancer patient in the Internet age – and explains why she won’t be overdosing on kale anytime soon.


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Our writer, Sarah Carlin

When Tim Berners-Lee invented the Internet back in 1989, he didn’t know that he was creating what would turn out to be an instrument of torture to many people diagnosed with cancer.

One of the few edicts given to me by my consultant was “stay off Google”. I managed it for about a day. And once I’d typed the words ‘small bowel adenocarcinoma’ into that search engine I immediately realised why it was such a bad idea.

Since then, many a sleepless night has been spent lit up by the blue light of a computer screen, heart pounding. Survival statistics – or what in my case would be better described as non-survival statistics – are accessible within seconds, hammering home that living through this is pretty much as improbable as me getting the disease in the first place. I search desperately for survivor stories, proof that people can and do live long after this diagnosis, and find nothing – apart from one old lady in Japan who appears to have had all the luck.

One of the most frightening things I’ve ever seen – on the Internet or elsewhere – was a forum conversation between people with my cancer (a rarity, given how uncommon it is). In 2009 the patients posting were gung ho about their chances for survival. A few years later, when someone newly diagnosed joined the chat to ask them how they were doing, they were met with a resounding, terrifying, silence. Missing, presumed dead.

Kale

Fancy some kale?

Almost as bad is the impact that the Internet has on other people; it’s an echo chamber of misinformation when it comes to cancer, and what you can do to cure yourself. There aren’t many patients who haven’t been confronted with a well-meaning friend telling them that the doctors spending huge amounts of NHS money on removing big parts of your body, or infusing your bloodstream with poison, or exposing you to huge doses of radiation in an attempt to purge you of the disease are just being silly. All you need to do to cure your cancer is eat loads and loads of lovely KALE.  Or alkalize your body. Or, if you’re really up for compounding your misery AND convincing your family that a cancer diagnosis has brought out a peculiar brand of caffeinated perversion, explore the joys of coffee enemas.

The mind boggles and yet, clearly not enough minds are boggling when it comes to stories like this. Self-styled ‘wellness bloggers’ abound. People who, despite having curative surgery or chemotherapy, attribute their cancer-free status to the fact that they ‘healed themselves naturally’ with whatever scientific improbability they’re peddling.

These people seemingly don’t understand that adjuvant chemotherapy is designed to defend against a possibility, not an inevitability. Or that just because they eschewed tried and tested cytotoxins in favour of “de-toxing”, and made it out the other side, it doesn’t mean that another person in their position should do the same. However benign the intentions of these people, in an ideal world, they’d be forced to revisit the science curriculum, in particular the part that covers the fact that correlation does not imply causation. But as anyone can sign up for a WordPress account, vulnerable people can easily stumble across these sites and receive some very bad advice indeed.

Notable in this particular internet oeuvre, is Australian blogger Belle Gibson, who garnered a huge Instagram following with her tales of curing incurable brain cancer through diet alone – a story consumed uncritically by her followers and media outlets that really ought to have known better. Her popularity led to a book deal with Penguin and a place in the Apple Watch app store until, inevitably, it was revealed that the whole thing was fabricated. She never had cancer in the first place.

The Internet’s not all bad though. Without it, I would never have stumbled across Shine. Having cancer as a younger person can be extremely lonely but Shine, amongst many other things, enables those living with cancer in their 20s, 30s and 40s a chance to chat via a closed Facebook group – much needed when you’re three decades younger than everyone else in the waiting room. Without Shine, I would have panicked when I received news that I’d had a dodgy smear (apparently this is common post-chemo) and never have found people who truly understand the mental torture of ‘scanxiety’. Perhaps most important of all though, at a time when all your other peers are having fun, having babies and living in a carefree way that seems a distant memory, it’s comforting – selfishly – to know that you’re not the only one facing losing your life when it was only just getting started.

So, I’m a daily visitor to Shine’s Facebook group. And now, thanks to the acuity of targeted advertising, stoma care products are now breezily showcased down the sidebar. Thanks Internet.

Sarah Carlin is 31 and works as freelance in PR and as a copywriter.

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.

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


Greig Trout photo

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

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