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.


Helen Photo 1

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.

Helen Stem Cell

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. 

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Life – but not as you knew it: The importance of a cancer crew!

At Shine, we’ve always believed that there is a lot to be gained from being around others who just get what life with cancer is like.  We now run 11 networks across the UK which have men and women who have experienced a cancer diagnosis meeting up for coffee, drinks, dinner and occasionally some (very bad) bowling.  Once you’re diagnosed with cancer, many people feel like they’ve lost something; in our latest blog, Ellie Philipotts explores both the losses and gains that come with cancer and tells us why she thinks a cancer support network is so important.


Ellie Philpotts.

Our latest blogger – Ellie

 

Cancer, cancer, cancer. If you’re reading this, you can probably say you’ve been there, done that and got the t-shirt – but lost a number of other things in the process: hair, body parts, confidence, friends….

Going through all of this is almost second-nature to us Shiny people, but not to the average Joe, (which can seem like another term for ‘every person in the world but me’.)

I think there’s an irony in the fact that cancer itself is formed of millions of little cells going haywire, leading to what feels like millions of medical procedures to solve the problem and yet it’s one of the most isolating things a person can go through.  Despite the amount of people who’ve also had this diagnosis, when your own journey begins, it definitely doesn’t feel like millions of others know how you feel, either mentally or physically. What I’ve discovered though is that probably the biggest cancer perk (yes, they exist!) can be found in a new, post-cancer support system.

I was diagnosed with Hodgkin’s Lymphoma in 2011 when I was 15. Less than two months later, I went on my first ‘cancer trip’, to London with Teenage Cancer Trust. We completed a music workshop backstage at the Royal Albert Hall; met Roger Daltrey and saw The Who perform in aid of the charity. The next day was full of exploring Camden and realising how lucky I was to have been given such a great break from chemo and steroids.

From then on, during the rest of treatment and beyond, I’ve been heavily involved with Teenage Cancer Trust. My Birmingham Children’s Hospital group went on social events like meals every month and trips to London; sailing with the Ellen MacArthur Trust, two incredible Find Your Sense of Tumours; Look Good Feel Better days on the ward; Clothes Show Live tours…the list goes on!

In September 2014, I moved away from home to study English Literature and Journalism at Cardiff University. Obviously this was a big change – leaving the life I’d always known for a four hour round-trip away. Cancer barges into your life without warning, but after a while it becomes a part of your identity, so although by this stage I was no longer a patient, I was still leaving my hospital and support group at home. I’m not someone who wanted to forget about cancer as soon as I finished treatment. Instead, I’ve really liked being involved with different charities, and although my life definitely isn’t cancer-orientated now, it is nice to have my security blanket there.

In January 2015, I attended my first meet-up with Shine Cancer Support, this time in my new home of Cardiff. I heard about Shine Cardiff randomly after noticing Rhian, Cardiff’s co-founder, featured on the Humans of Cardiff Facebook page. I soon went along to a meet up at a local café which was lovely.

Shine Cardiff

Shine bucket collection on the streets of Cardiff

Despite being the youngest person in the Cardiff network (as well as the longest off treatment), I’m so happy I joined and I still find that I can relate to the others’ issues. More importantly, we definitely don’t just talk about cancer and we’ve had a lot of fun chats during our Friday ciders, Sunday coffees and Cardiff Bay dinners!

And that’s why I think Shine is so important: despite the different ages and life stages (some are married with children; I’m a student; others were diagnosed last month) we all have one big common ground and understand how it feels to have cancer. Verification that you’re not alone in feeling the way you do; a chance to make new friends; and bonding over past experiences are why cancer support groups are so important. Cancer is the reason these groups come together, but the laughter and other bits of conversation are also often one of the best ways of taking your mind off the cancer. Of course, our other friends are fantastic, but they can’t quite understand what we’re going through, because they haven’t been there themselves. The Shine crew is different! We can lose a lot through cancer – but a support group means you gain, gain, gain – friendship, happy memories, giggles, and probably weight – but weight gain from biscuits over a natter is surely preferable to weight gain from steroids, right?!

Ellie Philpotts is an aspiring journalist and student at Cardiff University. You can keep up with her on her blog

What happens at the Escape?

Between Jan 29th and February 1st, Shine ran our second Great Escape. For those of you who don’t know, the Escape is one of our best events – a three and a half day get together for young adults with cancer. We take over a hotel, we hang out, we talk about all the stuff we don’t usually get to talk about (like dating, depression and infertility) – and this year we hit the karaoke hard. You can see a video of our 2014 Escape here.

One of our Escapees, Minh, has written a bit about his experience at the Escape. Take a read – and get ready to sign up for Great Escape 2016!

2015 Escapee Minh Ly

2015 Escapee Minh Ly

The Lead Up

I began writing this as I sat on the train to head down Bournemouth for the Shine “Great Escape”. I’ve been in remission coming up to 8 years now and have pushed it to the back of my mind quite well. I can’t help but feel scared about spending four days talking and hearing about the subject cancer. I fear bringing up the past.

Why then, did I decide to go on the Escape? Well the fear didn’t really occur to me when I applied! Looking back on my application, I put that “I would like to spend time with people who have and are going through similar things that I’ve been through, particularly in my age range”.

I’d been to a couple of the Shine meet ups in London where I had met a few of the other “Escapees”. To help everyone get to know one another a little, we were all asked for a photo and a few paragraphs about ourselves to circulate. And to get us talking, a private group on Facebook was set up for us. It seems that I wasn’t the only one feeling slightly nervous.

I wasn’t sure what to expect, but with clear skies from the window of the train, I hope for it to stay like this for the walk on the final day!

The Escape

“What happens at the Escape, stays at the Escape!” – an Escapee, 2015

The whole experience and organising was great! Shine knows not to jump into the heavy topics on the first day, with everyone tired from travelling and new to one another, so they ease us in with introductions, let us get to know each other, have us do magazine cutting collages, and share our first dinner together. It was a very warm welcome.

The following days, a number of different sessions were run, some for everyone and the others in parallel, allowing the Escapees to choose the sessions that was more relevant to them. I’ve only been to the standard conference-type events, where you sit in an hour long session just to hear a couple of people talk, so that was what I thought the Escape would be like – but it wasn’t. Instead, there would be a short talk on a topic and then some form of interaction, whether that was breaking away into smaller groups for a bit of discussion before feeding back to the group as a whole or individually.

For me the topics were interesting, thought provoking and sometimes hard-hitting.  I particularly found myself nodding (well inside my head!) to a lot that was said in a session about Post-Traumatic Stress Disorder (PTSD). I’ve bottled a lot up and not really spoken about cancer until it’s too late and I have some form of breakdown. This session told me that I’m not the only one having trouble after remission and also that this can happen not just straight after treatment but many years later.

There was a lot to take in over the four days and I didn’t get time to process it all during the time away. There is so much going on, but its not always full-on; there are plenty of tea and coffee breaks (much cake included!) and you get free time to explore Bournemouth, the beach (5 minutes away), chat with others or just relax in your room. In the evenings, to take your mind off it all you could play a bit of bingo (with a variety of alternate bingo number calls) or partake/listen to the rest of the gang hitting up the mic and doing a bit of karaoke.

There was a sadness to be leaving the others at the end of the Escape, but I also felt ready to go back to my life, and ready to take action on the next steps.

The end of the Escape, but the start of moving on.

During the Escape, I thought about what I was looking for, why I came to the Escape and what I really wanted. This kept changing from session to session, day to day. After the first day I was sceptical about whether I would get anything out of the Escape as my mind seemed so lost and confused.

So what did I get? Firstly, I got the realisation that I need to talk about what’s happened to me, to relive it and stop burying it in the back of my head, whether that be by writing a personal diary, blogging ,or talking to a counsellor. I will never be able to get rid of the memories of being ill, but everything I learned at the Escape will help to dampen the effect it has on me when it suddenly crops up in my head.

Second, in the other Escapees, I’ve found friends who understand and who I can talk to when it feels like there is no one. Everyone is very supportive of one another and even after the Escape that has continued online.

Overall I feel good! I’ve had a bit of weight off my shoulders and though I’m not sure how long this feeling will last, I now know what needs to be done.  I think this is the first time that I’ve been in a positive mind-set about my cancer since I got into remission.

What people get out of the Escape will differ depending on their experience, but one thing is for sure: you will meet a fantastic set of people. The Escape was full of laughs (and some tears) as well as fun, and amazing people. It’s something I needed and something I will never forget. Thanks Shine and big hugs to the Escapees of 2015!

Minh Ly is a member of Shine’s London network.  He was treated for lymphoma 8 years ago and is in remission.

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.