Living with incurable cancer: talking to my children

In this guest blog post, Shine community member Beth writes about her story of living with incurable bowel cancer, and shares her experiences of talking about her illness with her young children.


 

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Meet Beth

My name is Beth, and I was diagnosed with bowel cancer in 2016 at the age of 37. I was working as a Paralegal, and about to start the final year of my law degree. This diagnosis could not have come at a worse time, just when I was finally pursuing the career of my dreams and becoming a solicitor. However, it was not my career that came to mind, but my family: my husband and my babies.

In 2017 things went from bad to worse. I was told that the cancer had spread to my lungs and was now incurable. I was given six months to three years to live. My son Joseph was nine at the time, and my daughter Abigail was just seven. How was I going to tell them? What was I going to tell them? How much should I tell them? How much would they understand? How could I make sure I was always a part of their lives? What could I put in place for them emotionally for when I was gone?

I had a lot of questions – mostly about my kids, not medical questions for the doctors. Who to ask? I found charity leaflets about talking to children about cancer, but they were very generic; I felt that there was a lack of support for parents and children in this situation. I wanted to speak to child psychologists, parents who had been through this, adults who had lost a parent as a child – anyone who could give me insight into the best things to do for my children. in the end I found help, ideas and support from my followers on my Facebook page. I asked if anyone had lost a parent at a young age and if so, what had helped them. Then the ideas came flooding in.

When I was first told I had cancer, we told the kids that I had some bad cells and the doctors were going to take them out, meaning that I would be in hospital for a bit. After my initial operation, we explained that I would need to have some medicine to kill off any tiny bad cells that the doctors could not see and help prevent any more bad cells growing. We explained that the medicine might make me feel ill. The progression of my cancer meant that I needed to break the news that the bad cells were back, the doctors could not cure me and – the bit I still needed to get my head around – I was going to die (but we had no idea when).

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Beth and her family

I talked to Richard, my husband. We planned to sit the children down and talk as a family, but not about time frames. Unfortunately, we never did get to sit down and do this. Life has a funny way of taking these things out of your hands.

I did tell Joseph and Abigail, but it was one afternoon when I was snuggled up on the sofa watching TV with them. An advert about cancer came on and Joseph turned to me and said ‘you had cancer didn’t you, Mummy? But you don’t have it anymore.’ My heart sank. We had never used the ‘cancer’ word, but he knew. Yet that was not what got me. Yes, I was going to have to shatter their world, and it would have to be now because I could not lie to them. The conversation went something like this:

 

Me: Well, you know that medicine to try and stop it coming back?

J&A in unison: Yes, Mummy.

Me: It looks like the medicine didn’t work as well as we thought, and I do still have cancer.

A: But Mummy, cancer can kill people.

J: But the doctors will make Mummy better, Abi.

Me: Unfortunately, the doctors can’t cure me, but they are going to do whatever they can to keep me here with you for as long as possible.

A: Are you going to die, Mummy?

Me: We all die one day, but I will probably die sooner than we would like. You know that if there is anything you want to ask me, you can. We can talk about anything.

There were lots of tears and cuddles, but oddly no questions – well, not then. A few weeks later my daughter, who is very matter-of-fact, asked ‘Mummy, will you last until Christmas?’. I am still not sure if she was more concerned about her presents – the man in a red suit does not get all the credit in our house…!

Both children made us promise that we would tell them whenever we got any new information. Joseph wanted to know about scan results and treatments. They seemed reassured by being included in what was going on. Just over a year on, we still have no idea how long I have left, but we take each day as it comes, and do everything we can to make as many memories together as possible.

We talked about making memory boxes, something they would have to keep their memories of me and our lives together as fresh as possible. The children put things into their boxes that remind them of something we have done together. It could be a photo of us together, anything that means something to them. I hope these boxes will help them to connect to me through physical things they can hold, touch, see, and smell.

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Dreaming about holidays

I am also doing things that the children do not know about: for example, I have written their birthday cards all the way up to the age of 21. This was tough and I cried a lot, but it was important to me. I set up an email address for each of them and I send them emails. I include a summary of something we have done together, what I enjoyed most, and a picture or two. I bought some books that ask questions about my life, and about their lives. I am in the process of completing these books and trying to answer all the questions.

I plan on recording videos and writing letters for special occasions. My husband can give them if he feels appropriate. The most important thing, though, is to be there for them right now and make the most of the time we do have together.

I am currently on a holiday booking spree…

 

You can learn more about Beth and get in touch with her via her blog, Facebook page, or Instagram/Twitter: @bowelwarrior. 

If you would like more support about talking to children about cancer, you can…

 

Living with incurable cancer: Talking about the future when I won’t be here for it

In this post, Shine community member Christine reflects on discussing future plans while living with incurable bowel cancer.


I have incurable cancer. It seems to create a lot of awkwardness.

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Christine with her parents

 

But, life goes on. I know that when I die the world will go on without me. That’s the same for each of us, though hopefully for most people that time is a long way off.

In the grand scheme of things we are all just tiny specks who exist for such a tiny length of time. Most of us will have only a very limited impact on the wider world. If we are lucky we will have some small influence on our little circles. But really, for the vast majority, the future will be no different without me in it.

I have accepted my fate, as best I can. What I find difficult is that other people make all sorts of assumptions about how I might feel, and it ends up limiting conversation.

Sometimes when a group discussion naturally gets on to future plans, people start to look at me uncomfortably. They might even try to change the subject. It is really not necessary. I don’t mind at all.

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A photo from Christine’s recent holiday

I am not worrying about pensions, or mortgages, or planning a wedding. It doesn’t mean I don’t understand the importance of those things to other people, and I don’t mind discussing them, though obviously I might not have much to contribute. (Except on weddings – I have a lot of strong opinions there!)

Of course I am sad that I won’t have the future I thought I might. And I am sad for all the things I will miss. But that sadness is far outweighed by the joy of knowing that those things will happen. My loved ones will carry on living without me. They will be happy again. I am not suggesting it will be easy – far from it.

I don’t believe in a heaven, or that I will be watching over them. When I am gone, that’s it. Whatever made me me will cease to exist, and my body will return to the earth. I will live on in the memories of those who knew me, and I hope that they will continue to feel my love even when I am no longer here. Somehow I will always be a part of their lives.

Sometimes I forget that my days are numbered, and I have little daydreams about my future, the same as anyone else. To be honest even without the whole incurable cancer thing I doubt many of them would come to fruition. Few of us live the life we planned, which is often no bad thing.

I don’t mind talking about the future, either generally or people’s individual hopes and dreams. I don’t begrudge anyone their good health or their future. I don’t wish that everyone else was dying too, just to keep me company. So please don’t leave me out of your conversations or feel that you can’t tell me things.

I still want to be a part of your life while I can. And if that means planning for your future then I am more than happy to join in.

Anyone who knows me well will know that I am quite organised. I like my lists and plans. I’ve had to let go of a lot of that because cancer is so unpredictable. But now I have a whole new set of plans to make – for my funeral, my end of life care, my will. It could be a bit depressing, but actually I get quite a lot of comfort from it.

What I am trying to let go of is my desire to continue to control the future when I am no longer here. I worry about how my family will cope. At first I came up with all sorts of ideas of how I could guide them through. But the reality is that I just can’t. I have to accept that once I am gone, they will need to learn to live in their own way. I don’t get to be involved in that. If they decide to abandon the monthly smoke alarm tests and the house subsequently burns down then it will not be my responsibility.

I thought about leaving cards for all the milestones I will miss. But I don’t even know what those milestones will be. And when would I stop? It seems a bit selfish, to inflict myself on them even when I am dead. I don’t want to gatecrash, or to make them sad on what should be happy occasions. And really it’s only to satisfy my own ego. I am dispensable. Everyone will be just fine without me.

Life isn’t just about the big milestones anyway. It’s in the boring minutiae of the everyday. When I imagine the future I would have liked, it’s those little moments that I will miss. Not when we are all dressed up to go somewhere fancy or putting on our biggest smiles for a photo, but laughing because otherwise you’d cry, or finding something to smile about when you’ve had a really hard day. And actually I think, much as I’d love to be there to celebrate all the wonderful things that are to come, it’s the hard times that I am sadder about. It pains me to imagine my loved ones struggling and not being there to help them.

Of course, there’s not really anything I can do about it. I try to give everyone as much love as I can right now while I am still here, and that will have to be enough.

If you’d like to connect with other young adults living with cancer, please request to join our private Facebook group or follow us on Twitter (@shinecancersupp) or Instagram (@shinecancersupport). 

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.

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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.


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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