What the doctor learned

Dr Charlotte Squires was diagnosed with advanced Hodgkin lymphoma in November 2018 when she was 30. In this guest blog post, she writes about how her diagnosis and treatment has changed the way that she approaches her career as a doctor.


Lymphoma is known for being tricky to diagnose: it can present in strange ways, or with signs that may not seem that concerning to people without medical knowledge.

As a doctor, it was surprisingly easy to work out what was going on. My partner and I were living and working in New Zealand on a year out between stages of my UK medical training when I realised that I was losing weight. Initially I was pleased, as many of us would be, and I put it down to healthier eating. But then the weight kept coming off, the night sweats began, and it started sounding less like a reason to buy new skinny jeans, and more like a cancer diagnosis waiting to happen. I wrote a list of what I thought could be wrong – each illness more worrying than the next – and took it, terrified, to my own GP. He thought I was just anxious but he took some blood tests anyway, expecting to be reassured. The next day I was on call at the hospital, seeing acutely unwell patients in the emergency department, when my GP phoned. My results were more abnormal than those of the patients that I had spent the morning admitting, and they were highly suggestive of cancer. Over the next week I had a CT, then a biopsy, and then confirmation of advanced lymphoma – the illness that had been at the top of my worrying list. packed up our things in three days and flew home. I found myself tipped from the end of the hospital bed, headfirst into it.

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Charlotte during treatment for Hodgkin lymphoma

Becoming a doctor involves a lot of learning. Medical professionals spend long years memorising anatomical diagrams, the routes of nerves and blood vessels, the causes of different symptoms, and what different organs look like under a microscope. We spend hours speaking to patients, trying to understand what it means to have an illness and to undergo treatment. We learn about drug doses, side effects, and the likelihood of successful treatment. We learn how to break bad news, and how to explain complex diseases.

And yet, there was so much I didn’t know.

I didn’t know what it means to have a mouth so sore that you can’t bear to drink. I didn’t know how it feels to lose all of your hair on your birthday, or how hard it is to know that it will take several years to grow back fully. I didn’t know the paralysing misery of severe nausea, or the gripping pain from bone marrow-boosting injections, or what it’s like to nearly faint in the middle of the Aldi Christmas aisle due to severe anaemia. I didn’t know how it feels to face down your mortality, or to lose friends, young and beautiful, to terrible illnesses similar to your own. I didn’t know what it was like to feel afraid, and so vulnerable that it’s as though your skin has been flayed from your bones. I didn’t know just how often the health service gets it wrong, or sends things astray, or just forgets, and how sometimes it doesn’t really seem to care. I didn’t know what it means to feel unable to trust your own body. I didn’t know how much bravery it takes, every day, to live with and through a cancer diagnosis. There is much I’ve had to learn.

I’ve learned what it means to wait, like Schrodinger’s patient, both relapsed and in remission at the same time, until the scan result arrives. I’ve learned how to sit anxiously, in quiet waiting rooms, afraid of what might happen on the other side of a closed door and wondering whether I’ll be able to find the words to tell my family if it’s yet more bad news. I’ve learned to try to sit with this, to own it, and to keep living whilst I wait.

I’ve learned what it means to be unable to plan ahead, or to have multiple caveats around treatment timelines, scan results, and the major impact of fatigue. I’ve learned what it means to cancel an anniversary dinner at the last minute after vomiting spectacularly in a restaurant car park, and how it feels to be the awkward one with special requirements, who needs others to be flexible, and who can no longer work those long hours without a second thought.

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Our blog author Charlotte

Now, eight months later, after four cycles of chemotherapy and more tablets and injections than I care to remember, I am back at work, on the easiest end of the stethoscope. My hair is slowly growing back, and I am beginning to feel more normal. But it is a slow process, full of peaks and troughs and unexpected detours. As a patient, I was often frustrated. As a doctor, I try to look for those frustrations and acknowledge them, even if I can’t always fix them. One of the biggest things I often think about is how as a doctor, I see my patients for 20 minutes in clinic and often have little knowledge of their lives beyond the hospital walls – and of what it means to have your life suddenly turned upside down. These days I try to ask, to listen to the stories, and to say, honestly, that managing illness takes more effort than treating it. As doctors, we’ve learned a lot to get to where we are, but there is still so much that we don’t know.

My experience on the Shine Great Escape

Guest blogger Sam was diagnosed with Hodgkin’s Lymphoma in February 2019 at the age of 28. After six months of chemotherapy, she found out she was in remission the day before attending the Manchester Great Escape. In this post she writes about her experience on the Escape and why she found it so valuable.  


Shine Great Escape Manchester 2019 - deckchairs

In October 2019 I made my way up to Manchester for the Shine Great Escape. This free weekend brings together young adults in their 20s, 30s, and 40s who have been diagnosed with cancer. During the 3.5 days retreat there are various workshops that explore issues that affect young adults with cancer. It’s also an opportunity to have fun and meet people who just ‘get it.’

After a two-hour drive from Birmingham, I arrived at the hotel in Manchester on Thursday afternoon. I checked in with the Shine team at reception and everyone seemed really chatty and friendly, so I immediately felt at ease. After dropping my bags off in my room, I was introduced to my peer supporter and peer group. We had the opportunity to chat for a while before everyone headed into a room where Emma and Ceinwen (the founding directors of Shine) introduced themselves and we started to get to know each other.

In total there were over 20 of us attending the escape. Everyone seemed so different, but the more we talked the more I realised how much we also had in common. Although we had been through different experiences, it struck me how there were some things we could all relate to.

Over the next few days, I attended workshops on topics such as managing anxiety, relationships, and working after cancer. I can honestly say every single session I attended was invaluable. My brain was buzzing with information by the end of it. I even started saving snippets of advice in my phone so I wouldn’t forget things!

Each session was around 45 minutes long (sometimes shorter) and there were plenty of breaks built-in. There was also no pressure to do anything you didn’t want to do, and you could take a break or go for a nap in your room whenever you needed to.

When I told friends and family I was going on a “cancer retreat,” some assumed it would be a very sad and sombre occasion. Although the sessions covered some serious and sometimes painful topics, we generally maintained a light-hearted feel throughout.

Before coming on the escape I wasn’t sure how I’d feel sharing personal information about my life to a group of strangers. However, it didn’t take long before I felt completely comfortable. It felt good to know I could speak openly and honestly without fear of being judged.

Sam wearing an orange shine tshirt

Blog author Sam

What did I enjoy most about the Escape?

When I think back on my highlights from the Escape, there are a few moments that spring to mind.

On our first evening, we were given an icebreaker task to complete during dinner. Each table had to create a sculpture using pipe-cleaners, tin foil, and other random materials. The winning team’s Gwyneth Paltrow-inspired creation was brilliant! My team won the prize for ‘Best effort’ (which I’m trying to tell myself wasn’t just another way of saying ‘Congratulations, you came last!’).

When they bought in the therapy dogs on Saturday afternoon I had the biggest smile on my face! Then, on Saturday evening, we went into Manchester city centre for a meal before some of us headed on to karaoke. If you watch the video of the weekend, you’ll see I was really getting into it! Karaoke is something I used to enjoy doing before I was diagnosed (even though I’m a terrible singer!), and it felt so good to be doing it again.

In fact, this weekend really reminded me that cancer hasn’t changed me completely. I used to think of myself as a *fun* person, before chemo and hospital appointments took over my life. The Escape reminded me that I am still that person. I laughed and smiled more in those 3.5 days than I had all year!

During the final day of the Escape, we headed to Quarry Bank, a beautiful National Trust property around a 20-minute drive from the hotel. This was the location for our fundraising walk. It was very muddy, but luckily the rain held off. In total we raised almost £2,500, which will help fund places for the next Great Escape.

Shine Escape ready for fundraising walk

Would I recommend the Shine Great Escape?

Absolutely. The advice and information I received has been so helpful, and the memories I made will stay with me forever. I hadn’t been coping very well since finishing treatment, but the Escape helped me realise everything I’d been feeling was normal. That I wasn’t alone.

Our next Great Escape takes place in Bournemouth from 23-26 January 2020. Applications for the Escape – which is free to attend – are open until 15 November 2019. Apply now!

A version of this blog post was originally published on griffblog.co.uk.

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: One new immune system and two birthdays

There are lots of different types of cancer and, increasingly, just as many different types of treatments.  While many people with ‘solid’ tumours receive surgery, radiotherapy and chemotherapy, blood cancers sometimes require a slightly different tack.  In our new blog, Helen shares her experience with a stem cell transplant for Hodgkin lymphoma and discusses how her vocabulary – as well as her health – have changed over the last few years. We’d love to know what you think about the blog so please get in touch by leaving a comment or tweeting us on @shinecancersupport.


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Helen in Australia in December 2014

Let’s just say that science wasn’t my strong point at school. Now I wish that I could go back to my biology teachers and confuse them with the words like ‘chimerism’ that are now part of my regular language. For all its unpleasantness, having a donor stem cell transplant at the age of 33 has given me more than just a wider vocabulary.

In September 2010, I had just got married, celebrated my 30th birthday and moved to beautiful Gloucestershire, ready to start a new life with my husband. I had been a primary school teacher in London and was keen to find a new job in the countryside. A few short months later, I was diagnosed with Hodgkin’s lymphoma and any ideas of an idyllic life were put on hold.

I had ABVD chemotherapy and radiotherapy and achieved remission. However, months later, the cancer returned. I had to have more intensive chemotherapy and was told that I would need a stem cell transplant.

I had heard of bone marrow transplants but wasn’t sure how they differed from stem cell transplants. It turns out that the process is the same; the only difference is where in the body the cells are taken from. I knew something about how transplants work; high dose chemotherapy is given to kill off immunity, then replaced by new stem cells in order to create a disease-free immune system. However, at this stage I did not know that there are two types of transplant – one that uses healthy stem cells ‘harvested’ from your own body (autologous) and one that uses stem cells from a donor (allogeneic). Because I hadn’t responded as hoped to the second round of chemotherapy, the decision was made for me to have a donor transplant.

To be a donor, someone must have a ‘matching’ tissue type. My sister was tested, but was not a match. My only hope was to rely on the worldwide database of people who are willing to donate their stem cells should someone need them. So here’s to my match – an anonymous man from Germany who selflessly donated his stem cells to me, a complete stranger in England! If he hadn’t signed up to the register, who knows where I would be now?

Once I learned more about what it involved, my mind was full of questions. How long would I be in hospital for? With no immune system I would have to stay in isolation; how would I cope? How long would it be before I could go back to work? How would we manage financially? Would I get Graft versus Host Disease (which is where the new cells are recognised as ‘foreign’ and rejected by the body)?

Realising that I would be spending a long time in my hospital room, I decided to make it feel as homely as possible. I decorated the walls with photos and inspiring quotations (laminated, of course, so that they could be cleaned every day!). Instead of the hospital pillow cases the nurses let me bring my own from home as long as they were changed daily. I brought in a selection of DVDs, a laptop loaded with games, plenty of books to read and my adult colouring books, which I find helpful to relieve stress.

Some days, the most that I could achieve was to have a shower, but I made sure that I did this every day as it helped me to stay motivated. I also read about and practised mindfulness techniques which I found invaluable for dealing with all that was happening. Fortunately the hospital I was in had Wifi, which meant that I could stay in touch with family and friends over Skype.

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Helen’s new stem cells!

My new stem cells were given to me on 9th October 2013. I remember seeing them arrive by courier in a yellow bag and thinking that someone in the hospital was getting a pizza delivered! The process of receiving the cells was a bit of an anti-climax. It took around 40 minutes and was just like having a blood transfusion; the bag of blood cells was infused through my central line. The day that a transplant patient receives a new immune system is often seen as a new ‘birthday’. Apart from transplant patients only one other person has two birthdays a year and that’s the Queen!

After five and a half weeks, I left hospital. I still had to go for check-ups every week, partly so that the doctors could check on my ‘chimerism’. This refers to the percentage of donor cells in the blood and it is desirable after a transplant to be as close to 100% donor as possible. Although when I left hospital, my chimerism was good, by February 2014 it had gone down and I needed a ‘top up’ of my stem cells. This required an overnight stay in hospital but my chimerism has been going up ever since.

As soon as I was able, I went back to work in a Further Education college, a job I had started after my first remission. It was a change from my previous job but I enjoyed it. I visited Berlin, Spain, Hong Kong and Australia, all within the first year after leaving hospital. Almost a year and a half after my transplant I am having further treatment as some lymphoma has been found again in my body. However, because I have had a donor stem cell transplant, I can have another ‘top up’ of my new cells which, it is hoped, will get rid of the cancer for good.

I thought that moving to a different part of the country would make things harder to deal with, but it has actually helped me physically and emotionally because I could explore new places when I was well enough times during my treatments. Having so many changes in a short space of time showed me that I am adaptable and whenever I feel angry at having had to go through a stem cell transplant, I think of some of the things that I have been able to enjoy because of it: becoming a regular practitioner of mindfulness, going to four different countries in one year, having two birthdays and enjoying a new career path to name but a few!

Helen is a former primary school teacher now working as a Learning Support Assistant in a college of Further Education. She lives in Gloucestershire with her husband and Eric the cat.

You can register to donate your stem cells via Anthony Nolan, a charity devoted to saving the lives of people with blood cancer. 

Life – but not as you knew it: Laughter as medicine!

Got a case of the January blahs? Here at Shine, we’ve been looking at ways that we can beat the dark, grey days and bring a bit of happiness into our lives, regardless of the challenges 2015 might bring.  Luckily for us, we found Mandy Riches of Grin and Tonic which uses Laughtercise (yes, you read that correctly!) to promote physical and psychological health.  Mandy understands cancer because she’s been there: diagnosed with Hodgkin’s lymphoma twice in her twenties, she was then diagnosed in 2011/2012 with breast cancer.  Yes, we know it sounds a bit weird but we also think it sounds like lots of fun so read on and visit her website for more information!


Mandy Riches

Three-time cancer superhero and laughtercise guru Mandy Riches

 

There’s something about one year ending and a new year beginning that I find unsettling. It’s often a time for self-reflection which brings a myriad of emotions, ranging from the optimism and excitement of new opportunities, to a longing to simply curl up under the duvet and hide from the world. Since I was first diagnosed with cancer over 20 years ago, I’ve often had an urgency to really ‘live’ life though I’ve found that this is a double-edged sword.

On the one hand, it contributes to the fact that I can look back on 2014 and feel incredibly proud at achieving what I describe as my crazy scary challenge: cycling from Edinburgh to London in five days for charity. For someone who often feels like a cancer factory, this accomplishment helped me to regain strength both mentally and physically. The absolute focus on following my heart and in achieving something that once seemed out of reach was invigorating.

The flip side is that this urgency sometimes completely and utterly overwhelms me – the need to make the new year count, the need to make every month, every week, every day, every second count. It can be exhausting and my New Year self-reflections could easily spiral into the January blues. However, as I lie snuggled up nursing my inevitable winter cold, I have decided instead that I will laugh in the face of the January blues using Laughtercise.

What is Laughtercise I hear you ask?

Laughtercise is based on the principles of laughter yoga, which combines laughter with deep breathing. When my good friend Stephanie Hill from Grin and Tonic heard about my third diagnosis of cancer, she felt powerless and wanted to find some way to help me and my family, so she engaged us in using laughter as an exercise (as opposed to laughing at comedy or jokes). With simple, fun exercises and some deep breathing your serotonin (the happy hormone) increases, the laughter becomes contagious. You feel more relaxed, less stressed, more energised. Like many, I found it a bit barmy at first and I could have easily discarded it as “I’m way too reserved for that kind of thing”. But by simply letting go a little and using techniques to anchor it into daily life, it was brilliant.

Mandy and her colleague, Steph

Mandy and her colleague, Steph

For most of my adult life, I’ve been dancing the tango with cancer: twice with Hodgkin’s lymphoma in the 1990s and then breast cancer in 2011/12. I was devastated to have cancer for a third time, and it hit me much harder emotionally. I don’t know if it was the optimism of youth that carried me through the first two, or the cumulative effect of ‘here we go again’. Perhaps there was even an element of the unfairness of the breast cancer being caused by the radiotherapy I received for the Hodgkin’s.

One way or another, I experienced an overwhelming sense of emotion. I found myself crying for no real reason, I couldn’t sleep and I’d often wake up with tears streaming down my face. I found it really difficult to articulate what was going on.  Mortality had smacked me in face again and at least some part of me felt smashed, whether that was my sense of myself and who I was, my loss of innocence, my view on time, my view on what next.

I never thought that Laughtercise would become such a useful tool, but it did, and continues to be so. It has helped me to feel more in control of my life at a point when it seemed like cancer had taken over everything and every thought. Physically, the act of laughing and the deep breathing also helped to release some of the tightness I felt in my chest following reconstruction for my bi-lateral mastectomy. It also helped me connect with my family and friends in a really meaningful way.  When you’re dealing with cancer, people don’t know if they are allowed to laugh around you.  It was easy for me to give ‘permission’ for them to laugh with me, and although it started as an exercise, it was contagious and incredibly powerful, helping them to relax and deal with my illness too.

I know it all sounds a bit mad, but honestly you have to try it!  I am passionate about bringing more laughter into the lives of as many people as possible, and together Steph and I have created a DVD called “Dealing with Cancer? Laughter Works”. January can be a tough time for many people, cancer or not. Whether you’re happy, sad, or just need a little pick me up, I’d encourage you to get out of bed, grab the next person you see, or simply look in the mirror and give it a good Ho Ho Ho. It’s infectious!

In addition to being a freelancer writer and running her own Customer Experience Consultancy, Mandy is now proud to be a Director of Laughter at Grin and Tonic.  

 

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

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

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

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


Charlotte and Neil

“I love you”.

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

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

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

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

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

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

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

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

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

Life – but not as you knew it: Juking the Stats

Anyone diagnosed with cancer finds themselves plunged into a new world. Doctors and nurses speak a language you have to learn, and all of a sudden your chances of living into old(er) age are measured in percentages rather than decades.  In our latest blog, one of our Trustees, Ceinwen Giles, writes about living under the shadow of statistics and how it feels to live when dying feels much closer than it should be as a young adult.  Take a read – we think many of you will be able to relate to what she says.

Juking the Stats!

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Guest blogger: Ceinwen Giles

One of the many things that I learned from binge-watching five seasons of The Wire was the concept of ‘juking the stats’. In the show, the police ‘juke’ statistics to show a reduction in crime. Rename “battery” as “assault” and, voila, crime goes down. In the four years since I was diagnosed with Stage 4 non-Hodgkin lymphoma, I have often revisited this concept.  Is it possible to juke the stats I’ve been given and make them better?

The first question I asked my haematologist after he gave me my diagnosis was what my chances were. In a scene that is seared into my brain, he looked at me and said ‘In most cases of this type it’s about 50% at five years. In your case, the disease has spread so much, it’s closer to 40”. I remember asking if he’d ever seen anyone in my position recover. He said yes, but then added the classic cancer doctor refrain: ‘But everyone is different’.

When I was sequestered in the hospital receiving treatment, I would often call my husband late at night and ask him to list all of the reasons that the statistics didn’t apply to me. I was younger than average – one point. The stats are always ten years behind advances in medicine – another point. I was fit and healthy (you know, before I had cancer) – one more point.

Unfortunately, the International Prognostic Index for non-Hodgkin lymphoma, designed to help doctors treat my disease, thwarted my efforts to make the numbers work in my favour.  I was young, yes.  But I had also spent most of my time ill in bed before the diagnosis was confirmed. The disease was present both above and below my sternum.  The tumour markers in my blood were through the roof.  Deduct one point for each of those, and I was right back where I’d started.

Having discovered that the stats did apply to me, I then spent evenings scouring the Internet for an indication that they were better than I’d been told. One of the only times that I truly freaked out post-diagnosis was after an exhausting online search confirmed that they weren’t.  No matter how I Googled it, 40% was as good as it got.  In fact, 40% over five years is good for Stage 4 cancer.

The stats played tricks on my mind, taking me to dark places.  In the waiting room of the haematology clinic one Friday, I spent time counting 10 people and think “six of you have to die, so that I can be one of the four that live”.  It’s not that I wished death on anyone in particular, you understand, but if only four of us were going to live, I desperately wanted to be one of them.

Even with remission confirmed, I remained paralysed by the numbers. Did I want to go out for dinner in three weeks’ time? I didn’t know – I might be dead.  Planning holidays fostered an inner turmoil; I wanted to get away but I was scared that advance planning would mean I was tempting fate. My husband and I bought a flat but I couldn’t work up the energy to decorate. I was happy that he and my baby daughter had a nice place to live, but, if I was going to die, I didn’t care what the sofa cushions looked like.

Anyone with cancer will have heard a million and one clichés about death. Life has a 100 percent mortality rate! You might get hit by a bus tomorrow!  The difference, as one of my friends recently remarked, is that when you get hit by the cancer bus, you’re left lying in the middle of the road, wondering when the next bus is due to arrive.  Getting up and dusting yourself off is not easily done, nor is “living as if you’ll die tomorrow”.  If I knew I was going to die tomorrow, I’d be out drinking heavily, smoking and blowing all my money.  With only a stronger than average possibility that I might die, are any of those things really a good idea?

Four years and four months on from the original 40% conversation, I’m still here and still in remission.  Although I have yet to make peace with the stats, living with them has made me prioritise things differently.  Pre-cancer, I thought part-time work was for slackers and often worked too hard.  Post-cancer, I try much harder to balance my work and the rest of my life. I still have ambitions, but they’re measured more against personal satisfaction than external reward.

I had always assumed I would live into my 80s.  Having so little clue about the future creates a strange tension and makes every day leaps of faith even bigger.  If I make it to five years cancer-free, every ache and pain will still make me worry that the lymphoma has come back.  If I’m one of the four in ten who survive, I will wonder what has happened to the other six. In many ways, my doctor was right; everyone is different and no one can tell you exactly what the stats mean for you.  I may not be able to juke the statistics in my favour but I do know one thing the numbers don’t show: hoping for the best doesn’t hurt.

Ceinwen is a proud Trustee of Shine Cancer Support and the Point of Care Foundation.  She tweets from @ceineken and currently freelances in the fields of patient experience, cancer, and whatever else she can get paid for.  And she thinks that this cartoon (from Xkcd) pretty much sums things up: