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

I never anticipated how much my life would change once I become a volunteer, and now I am so proud to call myself a Cancer Champion - Zoe Ashworth

Zoe Ashworth, Cancer Champion

Zoe Ashworth (second left) at the launch of the Cancer Champions project

Around five years ago I made a big decision, one which would ultimately set me on a completely different path.

I decided I was no longer happy working in the financial industry that I had worked in for several years, and that I would find something that gave me meaning, that I enjoyed doing, something that I ‘got something out of’.

I didn’t know where to begin. I knew that I wanted to work with and help people; I just wasn’t sure where, what I wanted to do or how to start. I started to think about my options. 

Shortly after, I applied to become a volunteer at my local hospital, Stepping Hill in Stockport. I had my interview and luckily landed a volunteer role which I was very pleased with. 

I enjoyed volunteering so much that I applied to a nearby college for an access to higher education course and also to re-do some of my GCSE’s. I knew this wouldn’t be easy especially as I had a one-year-old daughter. In becoming a volunteer, it made me realise that helping people was where I wanted to be. After a difficult childhood, I had finally found something that made me feel elated!

Despite my initial doubts, after much perseverance, I achieved excellent grades in my access course and managed to re-do the three GCSEs I needed to get into university, all whilst volunteering for around three hours each week.

You’re probably wondering how this links to The Christie and how I become a Cancer Champion.

Well, I knew that my late nanna attended The Christie when I was as a child, but it was only when I reached my mid-twenties that I found out she had received treatment at The Christie for breast cancer, not just once, but twice. 

My nanna always spoke so highly of The Christie even when I was young. I just didn’t know how special The Christie was until I became an adult and realised how privileged we are to have such an amazing, world class hospital within Greater Manchester. This being confirmed more recently after my grandma was diagnosed with lymphoma and started receiving treatment at The Christie last year. 

You see, going back many years ago, I had always wanted to know more about cancer, why people get it, how can we prevent it and so on. Sadly, cancer will more than likely affect us all, in one way or another, if it hasn’t already.

As I achieved all the grades I needed to get into my chosen university, I became a student nurse. As a student nurse, you get various placements within different trusts. It was on one of my study days during my first year as a student nurse that I attended a multi-disciplinary team (MDT) meeting with Stockport’s cancer board. 

An MDT meeting is where various professionals come together to make decisions about particular issues. It was during this MDT meeting that I met the regional manager (North West) for Beating Bowel Cancer as well as staff from Public Health Stockport MBC, Macmillan and Cancer Research UK. They were discussing a new bowel screening project (bowel cancer is currently the 2nd biggest cancer killer). 

Despite being a nervous first-year student nurse (with no knowledge of bowel cancer or bowel screening) I mentioned my previous volunteer experience and suggested it would be a great idea to consider volunteers from various areas, including existing hospital volunteers and even students from universities/colleges to help raise awareness. There are many people who are willing to give their time for fantastic causes such as this, they just need to be made aware.

The team welcomed my suggestion and before I knew it, despite having a young child and managing a university degree I was receiving the training I needed to become a Beating Bowel Cancer screening volunteer. The training was very informal and I didn’t need to have any previous knowledge of bowel cancer/bowel screening. I was provided with all the information I could possibly need. They were all so kind and friendly, and we all shared the same interest in helping people.

I was keen to get on board with the project as I believed that this volunteer role had the potential to make such a massive difference to peoples lives, catching cancer early is vital if we are to improve outcomes for people and their families.

In my role as a Beating Bowel Cancer volunteer/cancer champion, I visit a local GP practice where I am given a list of all non-responders (people who don’t send back their bowel screening kits after they have received them in the post). Currently, everybody aged 60-74 should receive a bowel screening kit every 2 years. I work through the list contacting patients by telephone in relation to bowel screening. I record the outcome of each conversation, taking note of who has agreed to have a new kit sent out. I work with the GP practices’ practice cancer champion, and at the end of my conversations I provide them with a list highlighting which patients have agreed to have a new screening kit sent out, the practice cancer champion will then order the new kits.

Crucially, the earlier bowel cancer is detected the better the survival rate.  Earlier diagnosis also increases the odds of treatment success, resulting in fewer complications and improved quality of life for patients.

Volunteering with Beating Bowel Cancer has provided me with the skills and knowledge that I need to inform people about the importance of screening. I am passionate about health and knowing that I am making a difference, however small, makes me feel proud. Even if I help just one person, that means that I have done my job!

Being a Cancer Champion is very rewarding. I believe more people should be aware of local volunteering opportunities available to them. I think it’s important that people understand there is some flexibility, most people are very time poor so it is important that people are aware of the different ways in which they can help. Once people understand how meaningful volunteering can be, I am sure that many more people will be keen to get involved.

My young daughter and I hosted a bake sale and raffle on World Cancer Day (February 4th) to raise awareness and get people thinking about bowel screening. Anything I can do to make people think about screening is good enough for me, plus it was great being able to get my daughter involved too, she really enjoyed it and we made around £500 over the weekend, so it was a win-win situation.

I have learnt a lot about myself these last few years, and whilst it hasn’t been easy, I am so pleased that I have made the decisions that I have. Everything I have done, both big and small, has led me on to something else. I am enjoying the journey and through volunteering I have gained skills that I couldn’t have gained any other way. I volunteer as a Cancer Champion as often as I can, and have now gained a particular interest in public health. I started by volunteering on a hospital ward, and in doing that have changed my life. I am grateful for every experience in my life, both good and bad, because they have led me to where I am today, and I am privileged to be in a position where I can make a difference to people’s lives. It makes me feel good and I couldn’t imagine doing anything else.

It is vital that where possible we prevent cancer, but what is equally as important is screening and awareness initiatives. I feel it is my role to inform and empower people about screening. In my role as a friend, mother, relative, student nurse or volunteer, I will always try and do my bit so that the people around me are empowered to make the right decisions for them, so that they can all have long, happy and healthy lives. The more Cancer Champions that we have on board the more likely we are to beat cancer sooner.

If I can be a Cancer Champion, anyone can…..

For more details about how to become a cancer champion go to www.vsnw.org.uk/become-a-cancer-champion/ 

I wanted to give something back to The Christie through the Total Warrior event in the wake of my father's death - Kristian Sparrow

Kristian Sparrow, Christie fundraiser 

Kristian Sparrow

On 18th July 2017, my world changed forever. I lost the only man I have ever loved, my father, Douglas Sparrow. He fought his disease for five long years, endured four major operations and three years of chemotherapy.  

The doctors, nurses, volunteers and all other staff at The Christie made his last years that little bit more tolerable.  He was known by all and greeted with warmth every time he walked into The Christie.

Although he passed away at St. Anne's Hospice, the care he received at The Christie was second to none.  They do a wonderful job in the most harrowing of circumstances and they are at the forefront of research in the oncology field.  

Through my work as the owner of Didsbury based www.idealhouseshare.com and to say thank you for The Christie's amazing work, I led a team of 13 staff members and tenants on the gruelling Total Warrior assault course in the Lake District on 5th August.  

With over £3,000 raised and counting, I feel great to have been able to give something back to The Christie and would encourage other survivors of those who have been taken by cancer to do the same. It was a cathartic experience to do such a physical challenge in the wake of my father's death.

idealhouseshare.com staff and tenants

Obviously, the Total Warrior event was made all the more poignant by his sad passing, something I had not foreseen when I began to look for participants back in April.  

Apart from when he was having chemotherapy, he never really appeared outwardly sick and so perhaps we were lulled into a false sense of security regarding his condition. However, the disease really accelerated from the end of May and only then was his fragility truly exposed.

One in three of us will be affected by cancer in our lifetime (and one in two of us born after 1960 will have cancer at some stage in our life). Before his eventual admission, I visited The Christie on many occasions with my father for his consultations and appointments. What struck me whilst sitting with my dad in the waiting rooms was the randomness of it all. Cancer isn't necessarily a disease that specifically targets old people; it's a disease that can strike people down at much earlier stages too. Whether it's young mothers with breast cancer, kids with Leukaemia or older smokers like my dad, cancer can devastate anyone.

One thing I did learn from my dad about cancer is that attitude plays a big factor in its treatment. 

Doug took it in his stride, and within reason, it didn't stop him doing anything wanted to do. He wanted to be useful, he carried on telling his jokes and his stories and despite difficult personal circumstances outside of the disease, Doug carried on being jovial and always had a willingness to make people smile.  

Kristian and his dad Doug

Those with a lust for life and inner strength will maximise the time they have left and those who are closest to the patient can provide calm through a stormy sea.  I saw my father most days for the last year of his life.  In that time I was lucky enough for him to see me get married and even tell him that I myself was due to become a father, this October. Although he very sadly missed out on being a grandfather by a matter of months his spirit will live on in my little boy and I promise to pour every bit of love I have in my soul into my own son. I hope that I’ll be able to give my own son as much as my dad gave me.

However, my story is just one tale in an ocean of tragedy that cancer evokes. My relationship is no more or less important than the next, only to me, my family and our friends.  

But cancer will affect every family. One day it could be you having to have a tumour operated on, having chemotherapy or watching your nearest and dearest suffer. So what can we do to stop it? 

We must support the vital work and research that The Christie does. I will continue to support The Christie for the rest of my life. God bless all of the staff there who treat the sick and weary and bless the work that goes on inside the hospital walls.

To anyone who is going through a similar experience as I have, my advice would be to say everything you need to say, do everything you need to do with those you love as time is but a fleeting moment for us all. I was lucky enough to heed this advice and I urge others to do the same.

Choosing to have my treatment at The Christie was the best decision I ever made - Esther Parkinson

Esther Parkinson, Christie patient and fundraiser

Esther Parkinson

I was diagnosed with breast cancer in September 2013. It’s a date that will always stick in my mind, and sometimes still feels like yesterday. Diagnosis day was a very dark day. 

Anyone who has been affected by cancer, directly or indirectly will know the impact it has on your life. Not just yours but others around you too. It turns your world upside down and rips up the rule book on emotions and how you should feel. You don’t know where to put yourself, what to do, what to say, whether to cry, whether to shout etc. It sends your head completely into a spin.

I was diagnosed at my local hospital in Blackpool. At the time, my mum and my sister were with me when I received the news.  We went home that day, very quiet and caught up in our own thoughts. 

Fortunately for me, my sister is a consultant oncologist (in Cambridge) and a few days later, she recommended The Christie as a place to have my treatment. Although I’d vaguely heard of The Christie, I wasn’t aware of its renowned reputation and the brilliant work it does. So for me, I was weighing up having my treatment just 15 minutes down the road in Blackpool, versus travelling more than an hour each way to Manchester every time. 

My head was still scrambled at that point, as I was still trying to deal with the news of my diagnosis. So in my eyes, the less travel involved, the better - especially if I was feeling unwell due to the treatment. I wasn’t focusing on the important bit, which was where would be the best place to have treatment.

Lengthy discussions took place with my sister, and thankfully she put her foot down and insisted that I go to The Christie. She explained all the reasons why and highlighted that it was a specialist cancer hospital and was not only the number one hospital in the North West, but the best in the country. I couldn’t really argue against that, so I agreed to go The Christie. 

It was the best decision I was ever to make. 

Upon walking through the doors of The Christie, it instantly feels welcoming and has a friendly feel that I’ve never experienced in any other hospital. 

All the professionals and staff always make you feel like an individual, they genuinely want to help you get better, and help make the journey as stress-free as possible. They are obviously aware that you are going through a traumatic time, and there is always someone to speak to or hold your hand (physically as well as metaphorically). 

I have a phobia of needles, and the very sight of one (and even talking about it at times) sends me white and wobbly! Apart from the obvious diagnosis, having to have treatment intravenously was my worst nightmare come true, not to mention all the blood tests required. They all involved a dreaded needle. It was just unthinkable, and I had no way of getting past how I would cope. 

On my first treatment day, I mentioned my phobia to the chemo team and they made a referral there and then to the complementary therapies team. Within about half an hour someone came to see me, and started talking me through some cognitive behavioural therapy techniques and ways to try to relax to cope with the forthcoming treatment. They were extremely helpful and patient with me, and although stress levels were still quite high, they had reduced somewhat by the time it came to chemo time. 

On the following treatment day, I was visited once again by the complementary therapies team, and again they talked me through some more relaxation techniques. This time they gave me an aromatherapy stick to sniff (a bit like a Vicks inhaler but with aromatherapy vapours) when I was feeling anxious, and explained how to associate this with pleasant experiences and happy times. This proved to be a successful technique and helped make the treatment a calmer experience for me.

The following few treatments I learnt to cope without help from staff, using the techniques I had been shown together with the aromatherapy stick. It was a genius invention but such a simple one too. As my treatments were coming to an end, I was just about managing my phobia. What started out as something I couldn’t even comprehend going through, ended up being something I could just about cope with, without passing out!! This is thanks to the wonderful help of the complementary therapies team. 

My penultimate treatment was on Christmas Eve. I had mixed feelings about coming in the day before Christmas. But actually, it turned out to be a really lovely day. The staff were very upbeat, with their Christmas hats on, and it was a positive place to be (as it always is). I remember being offered a foot massage that day, which I happily accepted, and treated it as a little Christmas present! This was another marvellous relaxation technique and I pretty much sailed through my chemo that day. Another one ticked off the list and without any dramas too. 

Christie charity fundraisers David and Esther

I can’t fault any of the staff at The Christie. All the nurses were brilliant with me. They were always very approachable and introduced themselves at all times. They had a great bedside manner, offered advice when needed and listened to me whenever I had any questions about my treatment. Most of all, they treated me like a normal human being, and not just a number. They would happily chat with me about everyday stuff, whilst carrying out their duties and looking after me.

Everyone at The Christie is fabulous, from the volunteers, to the porters, to the nurses, to the doctors and the administration staff. There is always a smile on a face and a helping hand whenever it’s needed. 

The Christie has never felt like a hospital to me. As many people have said before – it’s like a second home - and I will always be comfortable visiting the place. The corridors are filled with positivity, despite so much illness being around. 

It just goes to show that The Christie is a place that really does care, discover and teach.

My Blip - Kaye Sawyer

Kaye Sawyer, Christie mobile chemotherapy service patient 

Kaye Sawyer

In 2012 my mum was diagnosed with stage 3 aggressive breast cancer. Aged 71 and still with everything to live for, she didn’t give it the time of day! Mastectomy, chemo and radiotherapy, she held her head high and punched the cancer in the face. Fast forward four years and it was my turn.

Diagnosed in February 2016 with stage 3 invasive breast cancer and HER2 positive I only had one option and that was to give it what for, just like my mum. I was ready, I knew what was coming and I was going to be just like her, head held high and smiling my way through.

So, after all the appointments and checks, I had my left breast removed BUT had a reconstruction at the same time; I was going under with one and I was coming out with one regardless. I was advised there could be slight complications with the implant and my skin may become tighter after the radiotherapy but hey ho, I’ll meet that if or when it happens.

With surgery a success I was on to chemotherapy, slightly delayed as I wanted to go on a weekend away, and why not? My life’s for living regardless, I will do the things that I can while I can. Punch number 1 done and dusted! 

After a weekend away with my fab colleagues, I began the chemo. My hair began to fall out after the first session but I had short hair anyway and after three sessions I was completely bald. I had the caps and scarves but they didn’t really suit me. I wore one for work once and one of my friends asked me to cross their palm with silver! (It was funny at the time). But knowing I would have no hair I had decided prior to all this to re-invent myself so I had got myself a long-haired wig. I loved it - it was my costume, it was my confidence and it quite suited me (I think!). There were moments of sadness through all this, but not for long.

The Herceptin was introduced to my last three chemo sessions plus the chemo drugs were changed. I had a concoction of madness that put me to bed for a couple of days but only to watch TV and chill out and it was on a weekend so really wasn’t a big deal for me.

I had my chemotherapy nearer to home at the Churchill unit in Bolton. This was far more convenient for me as I had my bloods checked on the way to work on a Tuesday, chemo on the Wednesday and then back in work on Thursday. That’s right, punch number 2, I worked my cancer treatment around my work not the other way around.

I had 18 Herceptin injections to get through (one every 3 weeks) and I was given the choice of The Christie’s mobile unit situated just five minutes from work, in Tesco’s car park to be precise!

I couldn’t believe I was rocking up to a car park to get lifesaving treatment but it is amazing. 

On approach, it’s a big van but on the inside it’s like a Tardis! I have been there every three weeks since September 2016 and I can honestly say it doesn’t feel like I am being treated for cancer at all. Plus, I can nip into the supermarket when I need to and get back to work in plenty of time.

The staff are fabulous of course and I have made really good friends there. We talk about everyday things and as women we chat about hair, make up and nails, swapping tips and truthfully having a good coffee morning! And I was delighted to be part of BBC Radio 5 live’s day of broadcasts from The Christie a few weeks ago, talking about the friends I’d made on the mobile unit.

It’s hard to believe that treatment/chemo is being given when we are all sitting there smiling but that’s the beauty of the chemo bus. There isn’t any waiting around, or walking along corridors and trying to find your way around and feeling nervous as hell. In fact, most ladies I meet here come on their own, it’s that easy.

My radiotherapy started last October, three weeks of going every day and was done at The Christie at Salford, part of Salford Royal Hospital, two minutes away from work so I went there on my lunch break. Punch number 3, I am nearly there!

I had my last Herceptin injection in July 2017. My road will end at the mobile unit but my life will carry on with (in a weird way) good memories of the beautiful people I have met along the way and a few good pictures of me with long hair!

I am only 47. My son Ashley has recently got engaged to his gorgeous girlfriend Abby. My mum is on her last year of medication, Letrozole, and both she and my dad live with me, we take care of each other and now we have a wedding to plan!

My family and friends think I am brave, an inspiration. I just think I have another funny story to tell, it’s called my blip!

Just remember that before that knockout punch you need to ask a lot of questions about the nearest treatment facilities for you, because that’s half the job done. It’s tough enough without the stress of traffic, car parking, who’s taking you, who’s picking you up and what you need to take to keep you occupied throughout the day.

You need all the strength you can get.  Each facility I have been to, for each stage I’ve been through, has been small, intimate and friendly and I have never spent all day waiting anywhere. But the best thing is, I hardly ever felt like I had cancer!  My last words of wisdom will be, rest when you need to, enjoy when you can and listen to your body. Most importantly don’t let the damn thing change you. We all have blips.

IN YOUR FACE CANCER!

You can hear Kaye on BBC Radio 5 live at https://youtu.be/u5MJrj4OBqY

To find out more about our mobile chemotherapy service please visit www.christie.nhs.uk/patients-and-visitors/your-treatment-and-care/our-treatment-centres/mobile-chemotherapy-unit/

I feel extremely privileged to support the patients who take the brave step to participate in clinical trials - Sam Corlett

Sam Corlett, clinical research nurse in the Melanoma team 

Sam Corlett

As a clinical research nurse I’ve often been asked what my role is and what a typical day involves. Firstly, there is no such thing as a typical day as a research nurse. The main focus of my role is to ensure the safety of the patients who are taking part in a clinical trial using a new drug treatment. 

My colleagues and I support the patients from the moment they are asked to consider a clinical trial to the point in time when they have completed the study for whatever reason that may be. 

Patients can ask for, or are asked to consider clinical trials at various times throughout their treatment; this could be at diagnosis or after other treatments have stopped working. I get involved at the very beginning by discussing the study with the patient and give them a patient information sheet which has full details of what to expect if they enter a clinical trial. 

Sometimes this happens in the clinic or it can be done via telephone after the consultation, but it is often both; it is important to ensure the patient does not feel coerced at all. 

My role is to ensure they receive all the information they need to make an informed choice about the best treatment path for them. This means I need to have knowledge of not just the trial protocol but also the treatment they would receive if not on a trial. There is no limit to a number of questions I get asked and what is important to one patient may be different to the next patient.    

Once a patient has made a decision to enter a clinical trial I plan with them the next steps. 

These include various screening tests such as scans and blood tests that we do at The Christie and sometimes tests at other hospitals, for example eye tests. This can take a lot of co-ordinating to ensure the least number of visits for the patient. I am constantly keeping the patient informed of what is happening, for example the results of tests.

Screening is done to ensure the patient is eligible for the trial and to ensure that they can receive the trial drugs safely. Not all patients who consent to a trial enter one, they may have a blood test out of allowable range for example, which means they cannot enter a trial. 

Managing their disappointment when this happens can be challenging, especially if they have come to The Christie specifically for a particular trial. 

As a centre specialising in melanoma treatments, patients can come from far and wide. 

From the outset, I ensure they are aware that being considered for and consenting to a clinical trial is no guarantee that they will receive treatment. 

Communication is essential in my role, not just with the patients but with all the departments that support research at The Christie. I work closely with the radiology team to request scans and with the pharmacy team to ensure they have the drugs required and that the prescription is ready.

When all the checks have been done and a patient accepted onto a trial, I then schedule the patient for their treatment. This might be in our dedicated clinical research facility or in the main chemotherapy unit depending on the treatment. The Christie has a strong research culture which is evident throughout the organisation, within all the different departments. 

As many of the trial drugs and treatments are new, not all the nurses at The Christie know how to administer them, how they work, or what the side effects are. That’s why I am also a nurse educator. I use my specialist knowledge of the trial drug to help other nurses in the Trust learn about them.  

Being a clinical research nurse in melanoma has increased my knowledge not just of melanoma as a disease and how we treat it but also how new treatments are introduced into the NHS. 

The mantra of a clinical research nurse is ‘If it isn’t written down then it didn’t happen!’ which means paperwork – lots and lots of paperwork. 

I’m sure most readers have seen the annoying piece of paper that often gets in the way in a packet of paracetamol. Until I became a clinical research nurse I never realised where that came from. All the toxicities the patient experiences are documented, along with every drug they are taking both before during and after taking part in the clinical trial. This information is entered into databases by every hospital taking part in the clinical trial across the globe and once a drug becomes licensed that information becomes the annoying piece of paper in the drug packet. 

Reviewing the patient with the medical staff at every visit to the hospital means I can ask how they are feeling and what symptoms they have had, any new drugs they have taken and ensure that they know how to manage side effects in order that they maintain a good quality of life. This means we have collected the information required for the clinical trial and this can be entered into the database by the clinical research administrator with whom I work really closely. 

Being in a consultation with a patient when they hear good news, like a scan showing that the treatment is working, is an honour. But along with the highs come the lows. It’s all part of my job to support patients and their families when the treatment is no longer working. This is difficult and never gets any easier, particularly if I’ve known the patient for months or even years!  

Any patient taking part in a clinical trial is taking a leap into the unknown; it is a trial because we need to find out if the drug is more effective than existing treatments. Although many patients hope they will benefit personally from the trial, many are also doing it for altruistic reasons in the hope that other people after them will benefit from the research. 

As a research nurse I feel extremely privileged to support the patients who take the brave step to participate in clinical trials and helping them through the decision making process to the end of the trial.

Any patients who are suitable for a clinical trial may be approached by their clinician or a research nurse to discuss a study. Patients can also ask their clinical team at any point if there are any trials they may be eligible for. Anyone with a general enquiry about clinical trials at The Christie can email informationcentre@christie.nhs.uk 

A second chance - Julie Scates

Julie Scates, Christie patient

Julie Scates

In March 2014 I was 39 and my big birthday was approaching. My partner Steve and I had lots of great plans, but little did I know that a terminal primary peritoneal cancer that had spread to my ovaries, liver, bowels, diaphragm and omentum (the layer of peritoneum that surrounds abdominal organs) was going to thwart those plans and change my life forever.  

I am from Belfast in Northern Ireland and live there with Steve and three children now aged 24, 18 and 13. I always had a hectic family and work schedule up to Nov 2013 when my health deteriorated.  

I was classically misdiagnosed with irritable bowel syndrome and then ovarian cysts. I struggled with pain for the next few months with multiple stays in hospital. Eventually I had the shocking diagnosis that I had an advanced and aggressive stage 4 cancer. My world was turned upside down. I was taken to theatre for surgery and an attempt was made to remove the tumours. It was unsuccessful and the prognosis was very poor giving me just weeks to live. I asked for a second opinion but they had already done this during my surgery and it was agreed that it was too advanced to proceed.   

My immediate thoughts were how ‘how am I going to tell my children that I am going to die’ and ‘how can I leave them without their mum’.  Panic stricken we knew we had to work fast if I was going to have any hope. I remember thinking at the time if only I could have 6 months to try and make a plan for my children's future and prepare them for life without me.  

It sent my partner Steve into overdrive. He spoke to Target Ovarian Cancer who recommended The Christie in Manchester and another UK hospital.  We also researched clinics in Germany, USA and Mexico. I was desperate and we needed to move fast. We sent them all my scan and pathology reports. They all came back with treatment options and a plan, but only we could decide what path to take and that was difficult as we knew nothing about this rare form of ovarian cancer and Dr Google was deadly. 

It was a telephone consultation with Professor Gordon Jayson at The Christie that convinced me to fly to Manchester to meet him. He believed he could help but needed to see me. I was on a flight within a few days for an appointment in his clinic. I walked in frightened, in excruciating pain, covered in a rash from an allergic reaction to the pain medication I was on, but fiercely determined to do whatever I needed to. 

Within minutes and I mean literally minutes, his expertise and compassion was evident. He is a humble man but you can tell how passionate he is about his work and the patients he cares for. I look back on that first appointment and how my mind was firmly made up, Professor Jayson and The Christie was the right choice for me. He gave me hope in what I had been told was a hopeless situation so I went home to Belfast, packed a bag and my treatment commenced within a few days.  

Like myself, many people consider travelling to Europe and beyond for treatment but I feel blessed to have found an oncologist in a specialist centre like The Christie within the UK. I was a complex case and no doubt a challenge for any oncologist. I've had chemotherapy, radical surgery, more chemotherapy and have been able to access two different clinical trials that have not only prolonged my life but have given me a good quality of life with my family for the last three years and continue to do so.

During chemotherapy

It was daunting at first for my family as they worried about me travelling for treatment but some of them have accompanied me on my chemo trips and they have seen firsthand the care I receive when I'm at The Christie and can reassure everyone else at home that I'm in great hands. I have also made special friendships with other patients at the clinic.  

I may travel many miles to get to The Christie but I'm always made to feel at home. Each and every department I visit is always so upbeat, caring and accommodating - the clinical trials team, scans, ward staff, porters, blood test nurses, x-rays staff - too many to mention individually as I've been all around the hospital!  Everything I need is under one roof here. I was even able to get my wig and headscarves on site!  I have referred other women from home and other parts of the UK who have ovarian and other types of cancer to The Christie for a second opinion and they too have experienced the excellent care and expertise available.   

My clinical nurse specialist Catherine Rogers has been a rock throughout this. I was struggling with the incurable disease and terminal illness terminology that had been used to describe my cancer previously. She advised me to think of it as a chronic illness and this has changed my mindset and helped me cope so much better. The Christie team has supported my mental well being as well as my medical needs.     

I have had to reprioritise my life and fortunately have been on many adventures and travelled to amazing places since being diagnosed with cancer. I'm determined to LIVE with cancer, making the best of every day, rather than letting it dictate my happiness.  

People ask me how I cope with the travel from Belfast to Manchester, but the care and expertise I get from The Christie outweigh the effort it takes to get there. Only when you have walked a journey like this can you truly understand the positive impact on you and your loved ones of being able to have complete faith and trust in the medical team whose care you are under, and that is why I will continue to travel.  

All through this journey I've always looked for the silver lining and Professor Jayson and The Christie have been that for me. He recently told me in his own words that it was a privilege to be able to look after his patients but I, like any other women I have met in his clinic, feel privileged to receive the care provided by him and his wonderful team.  

Thank you.

I have never met someone who was as brave, and positive, and inspiring as Chris Hartley - Kirstie Binns

I have never met someone who was as brave, and positive, and inspiring as Chris Hartley

Kirstie and Chris

It's hard to explain the bond created when you meet a group of random strangers and decide to camp with them at a festival... and then continue that tradition every year after that. Each year the bond is stronger and the friendship grows... It's a beautiful thing really, to go from strangers to basically family, and the good times and memories will stay with you forever.

Unfortunately not every story can be smooth sailing...

This story is about a boy named Chris Hartley.

Chris joined our Download Festival family four years ago in June 2013, and although only meeting us for the first time, within a couple of hours he was one of us, and that weekend was one of our best. 

In  April  2014 Chris was diagnosed with osteosarcoma bone cancer, and started his treatment on 16th June. This was the week after Download 2014… Chris came to the Download festival and sang louder than ever before. We all made sure Chris had the best week to get him through his treatment.

Chris had surgery in September 2014 to remove a tumour from his humorous bone, and was fitted with a titanium replacement. Then he underwent a gruelling 20 weeks of chemotherapy which included being in hospital over the Christmas and New Year break.

Chris finished his chemotherapy at the beginning of February and was looking forward to finally getting his life back! Unfortunately an MRI scan at the end of February showed that there was a suspicious lesion in the soft tissue of the same arm as before. A biopsy confirmed the worst. Chris then had further surgery to remove this new tumour.

Finally thinking that our friend had won his battle, we started getting ready for Download 2015! Everyone was ecstatic that Chris would be able to attend in good health, and there was excitement in every text message sent.

Unfortunately with only two weeks to go we received another heart-breaking message from Chris. Once again the cancer was back in his arm. This time the doctor decided the best course of action was amputation of his right arm and shoulder blade.


Chris was given the option of the Tuesday before Download festival, or the Tuesday after... Being a rock 'n' roll hero, Chris came to Download and we partied harder than ever, and we really did have the best weekend of our lives, all of us together as one big family.

The surgery went well, and Chris was incredible throughout it all. He soon adapted to life without his arm, even smashing it on his videogames by using his chin! The support from his amazing family, his mum Sue, dad John, and sister Amy, and his devoted girlfriend, Hilary, made sure Chris kept a smile on his face.

In August 2015 we received yet another blow. With only two months since his last surgery, Chris was told his cancer had resurfaced underneath the scar from his previous surgery, in the soft tissue in his chest wall. A CT scan then revealed that the cancer had spread to his lungs. This time the doctor heartbreakingly informed Chris that it was a matter of slowing the cancer down, rather than curing it.
The decision was made that Chris’s treatment would continue, but this time at The Christie in Manchester. Chris was due to start a new course of chemotherapy on 21st September.

On Saturday 12th September, whilst on holiday, Chris’s right lung collapsed. Once home, Chris was taken to The Christie where he had a CT scan. This revealed an estimated 6 litres of fluid sat on his lung in his chest, which they started to drain, and left Chris with one working lung. On Monday 21st September Chris had to have a drain fitted for his left lung, as that had also started to fill with fluid.

On Wednesday 23rd September a few of us from his Download festival family went to The Christie to visit Chris. There was an arts and craft room led by a lovely woman. We got Chris out of his room and we all spent a few hours laughing, and joking and cutting and sticking. Unfortunately that evening Chris’s right lung collapsed again, and due to problems with his breathing, the decision was made to move him to the critical care unit.

On Saturday morning Chris was taken for keyhole surgery to try and relieve some of the pressure on his lungs. Once in surgery what was presumed to be fluid causing the difficulties for Chris, turned out to be a tumour. Chris was kept sedated and put on a ventilator to assist him with his breathing. Due to the discovery in surgery, and the extent of the tumours, Chris’s family were notified that he would not likely come round.

That night Chris’s mum Sue rang us, to tell us to all to get to The Christie, and spend some time saying what we wanted to say to Chris. Our Download family live all over the country… London, Carlisle, Northamptonshire, Manchester, Selby, Saltburn… but we all got in our cars and got to The Christie.

On Monday 28th September Chris passed away peacefully in his sleep, surrounded by his family and all his closest friends, listening to his rock playlist. We all got to spend time with Chris, and I cannot begin to explain our gratitude to his family for letting us be a part of it. They are our family as well now. Also a big thank you to the staff of The Christie for letting us be there all day, and explaining everything to us, we wouldn’t trade that day in for anything in the world.

Chris was an extremely intelligent, caring, funny, music loving rock n roll legend, and I am lucky to have amazing memories and the privilege of calling him one of my friends. I cannot put into words how amazing Chris was, especially how he dealt with everything… with a smile on his face. Even through all of his treatment he still managed to get a first class honours degree in Chemistry. All of us would say the same, we have never met someone who was as brave, and positive, and inspiring as Chris Hartley.

A person like Chris is not the kind of person you forget. The level of care and the efforts of the staff at The Christie are also not something you forget. Along with Chris’s family and the Download group I decided that his legacy must live on. The best way to remember Chris, and to say thank you to The Christie, was to start fundraising.

I started to email The Christie, everyone I spoke to was incredibly helpful, and there was no end of support for me. Chris’s mum Sue was also in contact with staff at The Christie, and they passed on information about a research project into osteosarcoma, which meant that the money we raised could go to that research through The Christie.

So first we planned an event, a Halloween party called creepy carnage. I decided to shave my head. We organised a venue, with live bands, a raffle, an auction and a buffet for over 100 people. Chris’s mum Sue shaved my head in Chris’s memory. The whole day was a success, I ended up bald, and we raised £5,535, with £2,990 of that going to The Christie.

This was the first of many fundraisers to come. Sue has held cake sales, and tombola’s, and has raffled off football tickets.

Sue also had T-shirts made with the details of how to text our JustGiving page, we’ve worn them to gigs and festivals and gained quite a few donations through them. We have worn them to all the gigs Chris had tickets for, so his smiling face was there with us at every time. Most importantly we wore them to Download festival 2016.

On the Sunday of that weekend, a band called Shinedown played and we as a family scattered his ashes at our meeting point at the main stage whilst they played a song two of us had performed at his funeral. We raised over £200 from the T-shirts alone that weekend, telling everyone who asked Chris’s story.

Later in the year we all signed up to do the Manchester half marathon. To look at us all you would laugh at the idea we could do a half marathon but nevertheless 17 of us signed up. We all trained hard and set up a JustGiving team page so all our efforts could be combined. Despite ending up stiff and sore from the run, all 17 of us crossed the finish line and we’ve raised over £6,300. Our total fundraising efforts are now over £15,500!

We now plan that every year there will be at least one big event, and as many little fundraising activities as we can manage. Chris’s legacy will live on, and we will keep on fundraising for The Christie. I know that there is nothing we can do that will bring Chris back, but knowing he’s laughing at us all from up there, with a smile on his face makes it feel like is he is with us, fundraising and still fighting cancer with us every step of the way.

To donate to The Christie please visit www.christies.org/donate.

In becoming a volunteer it felt like I'd turned a massive corner in my life - Shaun Dingsdale

Shaun Dingsdale, Christie volunteer, patient and fundraiser

Shaun Dingsdale

Last summer I started working as a volunteer in the May Draper tea bar at The Christie. My first day as an official volunteer was such a proud moment for me, and I feel the same way every time I turn up to do my voluntary work.

In becoming a volunteer it felt like I'd turned a massive corner in my life. Because it wasn’t so long ago that I’d been coming to The Christie for care and treatment, and was feeling like I was at rock bottom.

Now I was helping out in the tea bar and able to listen to and help the patients who were in the same position that I once was.

Six years earlier, back in 2010 at the age of 39, I had found a lump in my right groin which I thought was a hernia. After several appointments with different doctors I still didn’t know what the problem was. I was then sent for a biopsy at Leigh hospital and the results showed I had cancer.

I was told by the surgeon that the cancer I had was Hodgkins Lymphoma and that I’d need to go to The Christie to have treatment to get rid of it.

I came to The Christie in July 2010. My doctor, Professor Radford told me that I actually had Non Hodgkins Lymphoma, which is a lot worse and more aggressive than Hodgkins Lymphoma.

He also told me that if I hadn't come to The Christie to get this treated, then the cancer would have killed me within six months.

I was treated straight away with a combination of four chemotherapy drugs or ‘CHOP’ for short, and I had the option to take a trial chemotherapy called campath, which I did.

The chemotherapy did its job. But because Non Hodgkins Lymphoma is an aggressive cancer and there is a high chance of it coming back, I was told that it would be a good option to have a stem cell transplant to minimise the risk of the cancer coming back and to kill off any remaining cancer cells.

So in 2011 I had the stem cell transplant, where I spent 27 days in The Christie hospital for the treatment.

The stem cell transplant went really well, but it left me feeling very weak. It also left me not being able to keep any food or drink down whatsoever.

Because I couldn't keep anything down I lost a lot of weight. I went down to five and a half stone and was so weak that I was stuck in bed for around six months.

I wasn't able to do anything by myself. I couldn’t get to the bathroom because I’d lost all the strength in my legs. I couldn't dress myself. I couldn't even feed myself without the help of my wife and three kids.

Every single bit of energy had vanished from my body. To put weight back on I was told about a drink called 40sip, which would give me all the nutrients I’d need to start putting weight back on. Luckily those little drinks stayed down and I started to build my strength up.

My strength returned slowly. I was able to sit in a wheelchair and be pushed by my wife, just to get out and about and see the world again. 

My positive mental attitude then kicked in which made me want to get up and try to start walking. Learning how to walk again was really hard, but I did what I knew I'd have to do to reach that goal.

Once I had reached a half decent level of fitness I wanted to repay The Christie for saving my life. Just saying thank you in person to all the doctors and nurses I saw felt good, but to me that wasn't good enough. I wanted to show them how much I appreciated what they did for me.

So in 2015 I took part in two bike rides with my daughter to raise money for The Christie. Giving back was a good feeling, but I knew it was just the beginning and that my fundraising could be even bigger and better.

In 2016 I raised even more for The Christie. And even though The Christie was more than happy with what I’d achieved so far I still felt like I hadn't done enough. I still wanted to give something back that would make me feel on top of the world.

So I volunteered to do a bucket collection at a Christie event in Bolton, and that gave me the bug to do more voluntary work. That was when I was asked if I’d like to help in the May Draper tea bar at The Christie.

I felt so proud to be working there and it showed just how far I’d come since first being diagnosed with cancer.

Shaun in the tea bar

Becoming a volunteer is so rewarding. And The Christie makes a special effort to thank the voluntary workers, telling us how important our contribution is and how it helps the hospital. When I hear what all the many volunteers have achieved, it makes me feel good and proud of my efforts. Trust me - this is a feeling that's on a par with being told you are cancer free!

I can't thank The Christie enough for what they've done for me, but one thing I do know is that as long as I’m still around, The Christie will always have a willing volunteer and fundraiser.

I can't wait to get stuck into fundraising in 2017 and will hopefully raise even more than last year. When I stand at the top of Snowdon in June this year I'm going to dedicate it to my family and to everyone who works at The Christie for getting me where I am today.

I just want finish by saying a massive thank you to The Christie for saving my life and for letting me do what I do for them. I support The Christie in any way I can including supporting their campaigns. I’m proud to be supporting the #ididitforthechristie campaign and urge everyone to ask their friends, family and colleagues “What will you do for The Christie this year?” 

All volunteers go through a robust recruitment, selection and screening process and the Trust ensures they are well placed, inducted, trained and supported throughout their volunteering. For further information please visit www.christie.nhs.uk/professionals/work-with-us/volunteers 

There are lots of ways to raise funds for The Christie, whether it be at work, with friends, on your own or in a group - every penny you raise makes a difference for our patients. Please visit www.christie.nhs.uk/the-christie-charity/get-involved/fundraise/ for further information.