It’s Lymphoma Awareness Month – Meet Ceinwen!

September is Blood Cancer Awareness Month so we thought this was a great time to share the story of one of our founding Directors, Ceinwen.

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Ceinwen (right) with Emma at Shine’s 2016 Great Escape

Diagnosed with Stage 4b diffuse large-b cell lymphoma in 2010, Ceinwen now runs Shine with Emma (look out for her profile soon for #BreastCancerAwarenessMonth) and heads up our fundraising activities, as well as designing our national programmes with Emma, our other Trustees and our amazing volunteers. Having been through cancer, its treatment and its aftermath, Ceinwen’s insight and experience is key to what we do at Shine and helps to ensure that all of our activities meet the needs of young adults with cancer. Read on and please share with others!

When were you diagnosed and what with?

I was diagnosed with Stage 4b diffuse large b-cell lymphoma in February 2010.

How did you find out you had cancer?

At the end of December 2009, I was pregnant. I became really unwell and had my daughter prematurely. The doctors thought that I was experiencing complications from the birth so I don’t think they took things too seriously at first. About three weeks later, I developed such excruciating back pain that I ended up calling an ambulance and going to the hospital. They gave me antibiotics but when I didn’t feel any better the next day, I went back. I then spent three and a half weeks in the hospital seeing all kinds of doctors who were trying to figure out what was wrong with me. Tuberculosis was looking like a good candidate for a while and I remember thinking “that doesn’t sound so bad” but after a chest x-ray they realised I had a large mass in my mediastinum (a part of the body I’d never heard of before!). They also discovered I had “lesions” on my liver – at the time, I also didn’t realise how bad that sounded. Eventually, someone got a haematologist to look at me and he put all the symptoms together. I’d had night sweats, fevers, loss of appetite and unbelievable fatigue – all typical symptoms – but no one had realised I had lymphoma.

What did you think and feel when you were diagnosed?

I had barely heard of lymphoma when I was told I had it. I knew nothing about cancer and was obviously worried I was going to die. I

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Ceinwen & her daughter today

was devastated and worried I wouldn’t get to see my daughter grow up. And then pretty quickly I went numb. I generally managed to hold it together during the day but spent a lot of nights panicking and crying. I was also told that I would have to stay in the hospital for six months receiving chemo and I remember wondering how my husband and I were going to manage work and a baby and cancer all at the same time.

How did the people around you react?

I think they were as shocked as I was by the diagnosis. I had never heard of anyone having cancer and a baby at the same time and neither had my friends or family. I remember thinking “Cancer and pregnancy is a thing?”. For the most part though, they rallied around. I had family and friends come to stay and look after my daughter and help my husband out. I was never short of visitors! If there’s one thing cancer taught me, it is how much I am loved. Whenever I have a bad day now I try to remember that.

What treatment did you have?

I was put on a clinical trial testing a high-dose chemotherapy regimen called R-CODOX-M/IVAC-R. I had a Hickman line and two of the rounds had 15 days of chemo followed by a recovery period, while the other two rounds were 7 days of chemo followed by a recovery period. Part of the treatment is having “IT chemo”. I remember seeing that on my treatment sheet and not knowing what it was. It turns out it is chemo injected into your spine. I was horrified! For me, that was the worst part of the treatment. I had to have it done 8 times and I’d already had a few lumbar punctures and a bone marrow biopsy by then, so by the time I finished treatment I never wanted anyone to go near my spine or back ever again!

How did you feel through treatment?

I know for a lot of people chemo makes them feel terrible, but I was so ill when I started that the treatment made me feel better. I’d been so weak that once the chemo kicked in and started to push back the cancer I felt totally different. I had a period of time where I went days without brushing my teeth or getting out of bed. To be able to get up and take a shower felt like a miracle.

What happened after treatment finished?

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Monthly immunoglobulin infusion done at the hospital

For about a year after treatment, I focused on getting my fitness back. Spending six months in bed is terrible for you and I found it hard to walk for long periods because my feet and back ached. Just as I was getting back into running, I caught meningitis. I ended up back in the hospital for a month and it was then that the doctors discovered that my immune system had really taken a hit as a result of one of the drugs I’d had. My body basically doesn’t produce b-cells properly anymore so I need monthly immunoglobulin replacement therapy to prevent me from getting any more infections. Immunoglobulins are super expensive so I like to think of myself as a million dollar woman.

Tell us about your work with Shine

Shine is my and Emma’s baby! Both of us were diagnosed with cancer as young adults and we both found there was a real lack of support out there. If you aren’t a child or teenager, you get lumped in with elderly patients who may be lovely, but they don’t get what you’re going through. I remember mentioning to some people that I volunteered with how I was missing loads of work because my appointments took all day and they said “Oh, I just pack a lunch and make a day of it”. We had very different perspectives!

I met Emma at the end of 2010 and found out she had started a support group in Dorset called Shine. I’d wanted to do the same thing in London so we decided to work together. Since then, we’ve grown Shine into something bigger than we ever imagined six years ago. Our first workshop in April 2012 had about 20 people at it. Last year, our Shine Connect conference had 100. It’s been amazing to see how many people we’ve been able to reach and support. I always thought that I wouldn’t want anyone else to feel as alone as I did when I was diagnosed. I hope with Shine we’re helping to make that happen.

What difference has Shine made to you?

Apart from loving my job, Shine has also given me friends and support that I didn’t have back in 2010. I still get regular check ups, and aches and pains still freak me out. It’s good to have people I can call up to share my worries with – people who totally get it because they’ve been there. I frequently diagnose myself with other forms of cancer – cancer of the toe, cancer of the eyebrow, etc. etc. – and it’s really good to have friends who understand exactly why I’d be concerned that the bruise on my foot is cancer (and to explain why it’s probably not)

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Ceinwen with some of Shine’s peer supporters at the 2016 Great Escape

How do you feel now about your experiences? What‘s been the biggest change you’ve faced?

I think it can be hard to feel positive about something so awful, particularly something that changes your life so fundamentally. All of the things I thought I would have in terms of family and career changed when I was diagnosed. I was working in international development when I got sick and I remember my doctor saying that the sort of travel I used to do wasn’t an option, at least in the short term.

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Ceinwen working in Kathmandu, Nepal while pregnant – shortly before getting ill.

You can’t ever go back to who you were before, as much as you might like to. Some days, that really sucks. Having said that, I’m in a good place now! I absolutely love all the work we do at Shine and have a lot of fun. I’ve laughed more in the last six years than I did in the six years before that. Having a few life threatening illnesses does give you a different perspective on things!

If you could give one piece of advice to yourself before your diagnosis what would it be?

I remember being really annoyed that I’d managed to get so ill because I thought I was taking care of myself – I was a vegetarian and exercised a lot. Obviously I got sick anyway, so I’d probably tell myself to eat more cake.

You can read more personal profiles from Shine’s community here. Shine also has an private online community that we run via Facebook. To join, send us a request and then send a message to us through our main Facebook page. 

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

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

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


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Guest blogger: Sarah O’Brien

I discovered I had leukaemia by accident.

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

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

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

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

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

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

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

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

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

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

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

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

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