It felt great to be able to share my story on national radio and discuss body image issues and cancer - Lydia Greenwood

Lydia Greenwood

Lydia Greenwood

Body image and cancer are difficult things to talk about at the best of times. In a way, talking about them can make you feel vulnerable and you could even say there is a stigma, especially with body image. Although that is not necessarily what I believe.

So you might be reading this wondering why I agreed to go on national radio with BBC Radio 5 live earlier this summer to talk about my experiences, along with two other young women and a member of staff from The Christie.

I think I did it because since being treated for cancer at The Christie I feel like a different person now, in a good way. I feel stronger, more willing to do adventurous things and I’m more confident in my own body.

There are so many people who helped me on this journey both within The Christie and amongst my friends and family to feel confident in my body, its strength to fight this disease and my changing appearance. From the many doctors and nurses to the body image group run by Anna at The Christie as well as those who helped me with confidence and strategies to cope with the relentless cannulas.

In fact, I was astonished when a magician magically showed up just after an awful experience with a cannula to cheer me up! And one close friend even cut her hair short in solidarity with me as I lost mine. Others supported me through messages of encouragement on Facebook, long phone calls and even hundreds of people praying for me from different church circles that my parents knew. It all gave me the strength to fight my battle.

It was a weird experience to be back in hospital in the Palatine ward, as it felt like my time there had been a lifetime ago.

When I was speaking on the radio, at first, I was a bit nervous. But then it felt great to be able to share my story with potentially millions of people and possibly help others with issues they have about their body image. And it was great to listen to the two other young women taking part, Chelsea and Seren. We were all at different stages of our treatment, and able to give encouragement to each other, and also share some advice we’d learnt along the way!

If you’d like to know more about my story please read on.

I was diagnosed with Acute Lymphoblastic Leukaemia in October 2015. I was 16, had finished high school, and was ready to have a fresh start at a new college.

Before my diagnosis, I was a pretty average teenager with the kind of body image issues that I think a lot of teenagers have.

I was self-conscious about my size and didn’t feel confident to walk around in tight clothing, usually sticking to baggy clothes. I would see girls who were ‘thin’ and wished I could be like them. However, these feelings did improve after I started feeling more comfortable in college.

I’d only managed about a month of college when I started getting weird symptoms, such as extreme fatigue and being breathless when doing hardly anything. I began thinking this wasn’t normal for a teenage girl. I’d also started getting tinnitus (ringing in the ears), half-hour-long nosebleeds and my appetite was depleting.

At one point I wondered if I had cancer. Then told myself not to be stupid because people my age don’t get cancer! When I look back on it now, I think I was only trying to convince myself of that.

I hardly knew anyone, young or old, who’d had cancer. I’d heard of Talia Castellano, a brave young blogger who had fought cancer for six years, but I’d never made the connection that it could happen to me.

Finally, on 23rd October, my mum took me to A&E. We were supposed to visit my family that day, but I was too tired to get up and it took all the energy I had. My skin was also paler than usual. A few days before, my grandma had noticed how tired I looked and suggested it could be anaemia as it runs in the family. We went to the hospital expecting to get iron tablets but left with a cancer diagnosis.

Within 24 hours of my diagnosis, after getting transferred to Oldham hospital for the night, I was transferred to The Christie’s Teenage and Young Adult Unit. It may sound strange, but I was actually glad to be there. It wasn’t like the average hospital. The unit always had stuff going on, from crafts one day to a movie and pizza night the next. For me, it was a break from all the painful experiences with cannulas and the chemo brain.

One thing that stood out to me in the more than seven weeks I spent in hospital was the body image group facilitated by one of the members of staff, Anna. She had invited a small group of young women to come and share our experiences. We sat and talked a lot about cancer diagnosis, how it’s affected everyone and how our body image had been affected. As I looked around the room, I saw hope. There were women who had either completely finished chemotherapy or were outpatients, and that helped give me the strength and perseverance to know that if they can do it, so can I.

In hospital, I didn’t really pay much attention to my body’s state; I was too busy dealing with the intense chemotherapy to notice that I had started to lose a lot of weight due to the effects of treatment and being unable to eat enough. By the end of my time in hospital, I was around 52kg (about eight stone) and could barely walk because of how weak I was.

I found this quite upsetting and unsettling at the time. About three months before, I had wanted to lose weight. But now that I had, I realised it wasn’t all that it seemed and the truth was I looked extremely frail and not how I imagined looking. Ever since then, I’ve promised myself that I would never get to that state again. There’s nothing wrong with having fat and our bodies fight to keep us alive every day so our bodies are ideal just the way they are and not how the media tells us they should be.

In reality, some of the hardest things to do with body image during my treatment haven’t been visible to those around me, and that was the extreme fatigue and chemo brain that I’ve felt throughout treatment. What people see and what you experience are two completely different things. Only you as a person knows how you are feeling and it can be hard for people to empathise with patients who are having treatment.

A patient’s image of what they would like their body to be able to do is often different from the reality. Understanding this can be a great support to someone on this cancer journey.

I want to thank BBC Radio 5 live and The Christie for giving me the opportunity to share this story and to discuss a really important issue facing young women and men who get cancer. I want to thank the many people that have helped and supported me. Lastly, I want to thank anyone who has read this blog!

You can listen to Lydia, Chelsea, Seren and Anna discussing cancer and body image at www.youtube.com/watch?v=Zu3dbQS2oHs

Not many people are lucky enough to get to sing with a star like Chris Martin - Jennifer Miller

Jennifer Miller, young oncology patient (age 22)

Jennifer Miller

Not many people are lucky enough to get to sing with a star like Chris Martin, lead singer of Coldplay, but that’s what happened to me last weekend at The Christie. And I could never have imagined that it would happen 18 months ago, but 18 months ago I had no idea that I was about to be diagnosed with Leukaemia.

When I was diagnosed with acute promyeloid leukaemia in February 2015, I lost my confidence and thought I had lost my love for music and singing.

I was being treated on the Teenage and Young Adult oncology unit and it was a tough time. My veins narrowed and I had to have a number of lines put in for the treatment to be administered. After every round of chemotherapy I seemed to pick up an infection and needed to be brought back to The Christie.

The nurses would joke with me because no matter how ill I was I always had my music on and was singing along to it - this was my way of coping with what I was going through.

It was during this time that I met Steph, the music teacher on the Teenage and Young Adult oncology unit, and she helped to restore my love for music and singing. Steph had confidence and believed in me.

Every time I had to come back to The Christie after treatment meant I could practice and learn new music. At first I wanted to learn a new instrument but the headaches and chemo made me so ill that I couldn’t stand to practice for more than 5 minutes, as it was just so hard to concentrate. So Steph suggested that it would be best to stick to singing and I agreed.

I was encouraged to get involved in the young oncology unit band called YOU62. The band is made up of young cancer patients who all come to The Christie on a Thursday to practice and learn new songs.

The band have done some fabulous things. We were invited to go to London for an amazing opportunity to record our own song at Vivid Colours Abbey Road which is now available to buy and the money goes to The Christie.

Going to The Christie and singing with the band is what is getting me through life at the moment. The band has given me so much more confidence and belief in myself. I have been given opportunities that I would never have believed in myself enough to do without the band, like singing at fundraising events and in front of staff and patients at Christmas and Halloween.

But, without a doubt my favourite experience was last weekend when Chris Martin from Coldplay came to meet the band and other young patients at The Christie. We were given the opportunity to sing for him and then to sing with him - one of his songs The Scientist!

I can’t explain how amazing this was. We then sat around talking to Chris. He asked us about the YOU62 band and we asked him lots of questions. Chris then posed for photos with us and singed CDs and merchandise. As he was leaving he said he’d had a lovely day and wished he didn’t have to go to work, as he wanted to stay and sing and talk to us, but he had a Coldplay concert at the Etihad stadium that night.

Chris’s tour manger came back with a gift bag for us all. It was so thoughtful, we had tour merchandise and badges, iTunes gift vouchers, felt tip pens, notepads and Lego - all things we can use when we are in hospital.

I went home smiling and telling everyone about my day and how down to earth and amazing and genuine Chris Martin was. I didn’t think the day could get any better but how wrong I was. 

As I got home and opened Twitter and Facebook to upload my photos and videos Coldplay had posted a video from the concert. In it, Chris Martin was telling the whole Etihad stadium full of Coldplay fans how he had been to visit us and had the opportunity to sing with YOU62. He then asked the whole stadium to join in singing the chorus to The Scientist and said he was dedicating it to us. I was so overwhelmed. I was covered in Goosebumps and crying. It just shows that some celebrities are really down to earth.

I’d want to thank The Christie, the Teenage and Young Adult oncology unit and the music teacher Steph for believing in me and giving me all these wonderful opportunities.

Without The Christie, and all the wonderful thing they do for young patients, I don’t think I would have got through my diagnosis and treatment. I have also made some amazing friends and am so lucky to be part of a wonderful band doing something I love.

Thank you.

Being a young person with cancer can make you feel isolated - Sophie Vohra

Sophie Vohra - Patient in our Teenage and Young Adult Unit

Sophie Vohra

At the age of 23, one of the last things you expect to hear is that you have cancer. In April I was diagnosed with a Ewing’s Sarcoma on my sacrum. I had been suffering increasingly from bad pains and numbness down my right leg since January, which became so unbearable during March that I finally decided to visit my GP. 

Initially, we both thought that the pains were due to sciatica and that I should try to reposition the slipped disc into place with NHS recommended exercises and using anti-inflammatories to help with any swelling. Over the next two weeks I was unable to sleep because of the pain when lying down, having visited the GP again for pain relief that didn’t have any effect. 

I finally accidentally aggravated it so much after I had been swimming that I went into retention and had to go into A&E as we thought it may in fact be Cauda Equina Syndrome, which would require immediate surgery. 

When I was transferred to Salford Royal, they scheduled me for an MRI, assuming they would see a  slipped disc. Sadly what we got back was worse. There was in fact a lump that was pressing onto my spinal cord and at that point they didn’t know what type of mass it was. I therefore had a biopsy and after having to wait around two weeks I was told it was malignant and by the end of the month I was told it was a Ewing’s Sarcoma that was pressing on my nerves. 

Each time I received another piece of the puzzle as to what it was I would get upset for a little while and then I would get my head round it all.  I knew I would get all the treatment I would need and that I would have the incredible support of all my friends and family throughout it.

I started my treatment at the end of April at The Christie, and everyone and everything from the minute I walked in was incredible. My family and I never felt like we weren’t getting all the information we needed and the organisation of my treatment from the beginning was so efficient. 

I had all the initial tests done, I was randomised onto a trial regarding the administration of the chemotherapy for Ewing’s Sarcomas, had a Hickman Line inserted, and began treatment in the space of a few days. 

The fourteen cycles of chemotherapy over the months were tough and my body certainly found its way around most of the side effects – sore mouth, achy body, no blood cells… the list goes on! My treatment cycles occurred every two weeks, whereas the standard treatment is every three weeks. This meant I had very little time to feel well enough to do anything because as soon as I had recovered from the chemotherapy I almost immediately started the next dose. 

Being around some of the nicest doctors, nurses and other staff you will ever meet was also really comforting when, for several months, you feel like you spend almost all of your life in hospital. 

I was also very lucky to be put forward for Proton Beam Therapy treatment in America, as my tumour cannot be operated on. This treatment means that, as opposed to standard radiotherapy, less damage has been inflicted on the area surrounding my tumour and hopefully I have less of a chance of secondary cancer which can be caused by treatment. Having all of this available to me has meant I have received all the best opportunities to try and beat this horrible disease.

The Christie also has teams in place to make sure that your social and mental needs are looked after. A cancer diagnosis means you are plucked out of normality for a while, which is a huge shock to the system. 

With having to spend long periods of time receiving treatment on the ward, one of the things I am incredibly grateful for is the amount of facilities and activities that were made available. 

Both the Palatine ward and the day unit are designed to allow younger patients, their families and friends to have as enjoyable a time as possible while going through some really difficult times. The hospital provides modern single-occupancy rooms, a social hub for when you want to spend at least a little time out of bed, access to games and DVDs from the games room and a gym space amongst many other amazing things. Many people who have visited me on the ward couldn’t believe how wonderful it was and questioned if it was in fact a hospital! 

These facilities are also available for anyone no longer receiving treatment, which means that former patients can come to events held on the ward for example. We have all manner of events organised for us within and outside the hospital. There are band rehearsals, art workshops, language lessons, cooking and baking, a pizza and film night every Wednesday, and seasonal events such as a Halloween party held on the ward just to name a few. 

The teams also get tickets for music and sporting events, organise meals and get-togethers, and generally encourage a lot of interaction between all former and current patients. These are advertised on their Facebook page so we can easily be kept in the know. 

Being a young person  with cancer can make you feel isolated because it is less likely that we have come across someone in our lives who is going through the same thing at the same age. So being able to relate to others who are, or have been, in the same position as you is very important in understanding and coming to terms with the experience you and those close to you are going through.

I have finally come to the end of my treatment, with only the post-treatment scans to happen now, and I know I couldn’t have got through it without the incredible support of every single person who works with Teenage and Young Adult  patients. 

No one should ever have to go through a life-threatening illness like cancer, but places like The Christie and the facilities they have for young patients mean that we can not only get through our treatment, but can also continue to live a fulfilling and happy life as we do. 

I can move on now with my life, having started my PhD last month at the University of York. 

But I also have a very important network of people who I am very glad I met out of such an awful experience, and I will stay in touch with this group of inspiring young people who have come together through The Christie and the incredible staff who have supported us.