ContactA helping hand for families of children and young people with cancer

Summer 2016 Issue 71: Keeping active

Main picture: Edie dancing

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Gemma explains how running was her lifeline P. 5

Paralympic Champion Marc talks about winning his first race P. 12

Inside

a swimming pool so she could enjoy a dip whenever she wanted to.

Once home, Edie was determined to carry on with life as normal. She learned to ride her bike and rejoined her dance groups, taking part in a show at our local theatre. Our dog, Lily-Pickle, joined the family and Edie with her older brother Jacob fought over who could take the dog for walks. All great exercise in helping Edie regain her strength.

Cate Wilson, mum of Edie who was diagnosed with a brain tumour in 2011, talks about how her daughter has kept her love of sports despite gruelling treatment.

At the age of six, our daughter Edie was a healthy and active little

girl who loved swimming, running and sports and like many parents our main job was to get her to sit still for more than a minute at a time.

Edie’s favourite hobby was dancing and when not attending weekly ballet classes or her disco dancing lessons, she could be found in one of her Disney Princess outfits prancing round her bedroom to her latest routines.

But then shortly after the half-term holiday, we began to notice she was quieter than usual. Her usually high energy levels had disappeared, she was lethargic and tired, and her dance teacher noticed her balance was off and she was unsteady on her feet at times.

After a few weeks of visits to the GP and ultimately our local hospital, an MRI scan revealed the grim truth. Edie had a mass on her brain, a malignant ependymoma brain tumour. Like any parent in this situation, we were shattered and watched as our little girl went from being a happy, bouncy child to one fatigued and bloated from steroids and confined to bed as she underwent surgery to remove the tumour.

Following surgery in November 2011, we flew with Edie to Florida to begin a course of proton therapy. Although being away from her family and friends in Florida was tough, Edie was delighted to find we were staying on a complex with …continued overleaf

I feel better when I dance”

“

But in May 2014, a routine scan revealed her brain tumour was back and Edie’s life became another cycle of surgery followed by more radiotherapy, this time as part of a clinical trial in Tennessee, USA. Just four months after finishing treatment we discovered Edie’s cancer had spread to the spine and as the site was inoperable, she had to undergo yet more gruelling radiotherapy followed by chemotherapy.

For Edie, this meant the loss of her hair, her energy and for a while the loss of her mobility as the compression to her spinal cord saw her confined to a wheelchair for lengthy periods of time.

As a normally active little girl, Edie found this lack of independence difficult to cope with but, after finishing the radiotherapy and beginning chemo, she began to build up her strength and six months later was delighted to rejoin her disco dancing troop. In September 2015, she even led them in a two hour non-stop danceathon to raise funds for Edie’s Butterfly Appeal, a CCLG fund for ependymoma research in the UK.

Since then, and despite taking daily oral chemotherapy, Edie continues to join in school sports when she can and recently made her debut in the school football team, even finding a bandana to match the school colours!

One of Edie’s goals was to learn how to ride a horse. A friend of ours who owns a horse had casually mentioned in front of Edie that she might like to meet him and, if her health permitted, have a go.

Edie jumped at the chance and set off for an afternoon hack. Although exhausted afterwards, Edie loved the day, both riding and grooming the horse, and another ride is planned soon.

Although cancer has sadly been part of our lives for the last four years, Edie refuses to let it take over and prevent her from doing the sports and activities she so loves just like any other 10-year-old girl.

As Edie says: “Sitting around makes me feel bored and sad. I feel better when I dance or go out on my bike. Even though I can feel really tired afterwards, it makes me feel happy to join in.”

Editor’s note… Can four years really have passed since the London 2012 Olympics and Paralympics?! Amazingly, they have and in celebration of Rio 2016, we are dedicating our summer issue to sport and physical activity.

Cancer survivors Marc, Gemma and Kieran are all inspirations to the world of sport and their remarkable stories give hope that keeping active can be possible despite the challenges of cancer treatment.

Research shows that keeping active during and after cancer treatment can have many physical, mental and social benefits (pages 6-7). Photos from the annual sports day at Sheffield Children’s Hospital show just how much children enjoy having fun with their friends (page 9).

But if playing sport isn’t your thing then fun activities such as walking your dog, enjoying a family cycling trip (page 8) or dancing with friends like 10-year-old Edie (pages 1-2) are all examples of keeping active.

However, when other children are off horse riding or playing football, it can be difficult for parents to know what their child can or can’t do. Our medical adviser Dr Martin English gives the latest advice for parents and answers some common questions on sports and activities (page 4).

I hope this issue inspires you to have a go!

Claire Shinfield Email: cs349@le.ac.uk

Continued from page 1

Contact is a free, quarterly magazine for families of children and young people with cancer. Contact aims to reduce the sense of isolation many families feel following a diagnosis of childhood cancer.

Contact is produced by the CCLG in collaboration with CCPA.

Children’s Cancer and Leukaemia Group brings together childhood cancer professionals to ensure all children receive the best possible treatment and care.

The Childhood Cancer Parents Alliance is a parent-run organisation with the common aim of working together to support children and young adults with cancer andtheir families.

Contact magazine was founded in 1998by The Lisa Thaxter Trust and CCLG.

Editorial Board:Managing Editor – Ashley GambleEditor – Claire ShinfieldMedical Adviser – Dr Martin EnglishMedical Adviser – Dr Bob PhillipsJenny Baston – Nurse, LeedsJane Cope – Nurse, CardiffMike Francis – Parent, YorkKatherine Ince – Survivor, LondonRachel Hollis – Nurse, LeedsAnthea Martin – Survivor, LondonRachael Olley – Parent, CCPAGayle Routledge – Parent, StaffordPatricia Smith – Parent, IrelandGill Thaxter – Parent, CoulsdonHelen Thomas – CLIC Sargent, LondonSamantha Schoolar – Survivor, CoventryNicky Webb – Nurse, LeicesterHelen Dickinson/Tricia Halford/Anne Shaw – Social Work team, Leicester

Contact address:University of Leicester, Clinical Sciences Building, Leicester Royal Infirmary, Leicester LE2 7LX0116 252 5858info@cclg.org.ukRegistered charity number 286669The contents of Contact are the copyright of the publishers. Articles may be reprinted without charge provided that credit is given to Contact magazine. A copy of any reprinted article should be sent to theeditor at the address above.Please let us know your thoughts and feedbackabout Contact by emailing info@cclg.org.ukwww.cclg.org.uk ChildrensCLG CCLG_UK

Playing football

For more information www.cclg.org.uk/Edies-Butterfly-Appeal

On your marks!

2 Contact Issue 71: Keeping active

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News in brief

Children with cancer to get new gene testA new pilot study will sequence 81 cancer genes in children’s tumours to help personalise cancer treatment. Around 400 children with solid tumours at 21 hospitals across the country will start to receive the new genetic test, which is designed to pick up key mutations in tumours that drive cancer’s growth and spread. Testing will begin from 2016 and take about two years.

UK diagnoses children’s kidney cancer at a later stage than GermanyThe UK diagnoses Wilms’ tumours – the most common children’s kidney cancer – when they are larger and more advanced compared with those diagnosed in Germany, according to a Cancer Research UK study. The researchers predict this is a result of the different childhood healthcare systems in both countries. Treatment for Wilms’ tumour is the same across Europe.

Register for #CCC16 - 17 June 2016This hugely successful UK Childhood Cancer Conference returns for its third year in London. It offers a fabulous opportunity to meet other parents and professionals and keep up to date with current issues surrounding a diagnosis of childhood cancer and beyond. It’s not too late - register at www.childhoodcancerconference.org.uk

Our ‘Sport and Exercise for Children and Young people with Cancer’ booklet gives practical advice for parents. Order a copy at cclg.org.uk.

Those who know me would agree that I am built for comfort, rather

than speed. But I do like to put some time aside to take some exercise when I can. If I go through a busy spell at work and stop, then I notice the effects within a few weeks.

So how much exercise should a child or young person on treatment take? The answer is enough to make a difference, but not so much you make yourself feel worse. You need to get advice from your doctors, nurses and particularly physiotherapists about what you should be doing. We want the ‘Goldilocks’ level of activity i.e. just right. This will vary depending on where you are in treatment, if there are any other problems like infections and if you have any mobility or movement problems e.g. if you have a limb tumour or a brain tumour.

After treatment exercise is good, but again at the Goldilocks level. I know that if I launch myself back at the gym for two hours flat out after I have been away for a few months I will be hobbling around for the next week. That doesn’t do your health and fitness any good and may make you worse. If you have been off your legs for only a few weeks then it will take months to build your stamina back up. Look at what happens to a professional footballer who breaks an ankle! It may well take them more than a year to reach their previous level of fitness again. In particular, if your stamina is reduced you may need to choose what activities you want to do.

The NHS continues to hit headlines. Unfortunately they are negative, as that is what sells newspapers.

However, there are more pressures in services. Roles such as physiotherapy, occupational therapy, psychology and so on often become stretched within hospitals if there are money problems. This is short sighted as other team members don’t have the same skills therefore rehabilitation and discharge from hospital may take longer. This makes the service less efficient which costs more money. The resulting vicious circle leads to more cost pressures.

If you are having difficulty in accessing these therapists, or indeed dieticians, speech and language therapists and other professions then draw this to the attention of the managers in the hospital your child is treated in. Also let them know what is going well when you get input from them as well as your medical team. These personal messages of what is working positively and what is missing from your child’s care will add support when there are negotiations to get new posts and in arguing why posts should be replaced when someone moves on.

Nothing ever stays the same. However, feeding back personal stories of what is working and what needs to improve will help things change for the better.”

Just right

Dr Martin English is a Consultant Paediatric Oncologist at Birmingham Children’s Hospital and is also a CCLG member.

Contact’s medical adviser, Dr Martin English writes…

“

Sport and Exercise for Children and Young People with Cancer: A Parent’s Guide

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Children’s Cancer and Leukaemia Group

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Issue 71: Keeping active Contact 3

Can my child go swimming? If your child has a central line

fitted, then they are advised not to go swimming because of the risk of infection if it gets wet. If your child is a keen swimmer, you could ask the medical team whether a ‘port’ rather than a ‘line’ is possible so that your child can continue swimming. They will explain the differences between the two and the reasons why one might be better than the other. However, even if your child is offered a ‘port’ there may still be times when they are advised not to swim, for example, if blood counts are low, risk of infection or if they are generally unwell. Only swim in properly chlorinated pools with filters. Do not swim in ponds, rivers, the sea or any other open water or unfiltered private pools.

Can my child take part in contact sports?Contact sports such as football, rugby or martial arts which involve players grabbing at loose clothing, barging into

each other and knocking each other to the ground, are too big a risk and not usually advised if your child has a central line as it could be pulled out. However, your child can still keep up their football or rugby skills at their local park where they can kick a ball about and shoot some penalties! Children with ventriculo-peritoneal shunts to drain fluid off the brain should not take part in contact sports involving tackling or wrestling and should not head balls.

So what activities can my child take part in?Other games and activities can still take place and advice from your child’s medical team can be given about how to participate safely. Going for a family bike ride, walking to school and playing dance games with friends are all things children can enjoy.

What about other activities such as tennis, horse riding, cricket, athletics, gymnastics or Wii sports?

Several things are important here. Is there a central line and could it get damaged? Check with the surgical team how long to wait after an operation before doing these. If your child has had brain surgery specifically ask the surgical team what your child can do after the operation and tell them what they usually do. Avoid any sport where you may fall, or be struck by the ball, equipment or players, if platelets are low after chemotherapy. If they are immunosuppressed (if you need co-trimoxazole you are immunosuppressed) then avoid stables, straw and ‘mucking out’ where your child may be exposed to fungal spores. Horse riding outside is OK.

What is the advice for younger children going to soft play centres and outdoor playground areas? Be cautious if your child has low platelet counts, otherwise normal play should be fine.

Children’s drysuits for swimmingIf your child does have a PICC line (Hickman or central line), then a shortie drysuit may be suitable which has been specifically designed for children with a central line. The suit comes with short legs and arms with latex seals forming a secure seal just above the knees, elbows and around the neck preventing any water reaching the body inside the drysuit, and protecting the central line altogether. Your child can then get in a swimming pool, bath or the sea and play with friends and family. For further information, visit www.hammond-drysuits.co.uk

Dr Martin English, Contact’s Medical Adviser, answers some common questions from parents on whether their child can take part in sports and physical activities.

FAQs about sports

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When I first noticed a small lump in my neck, I didn’t really

think anything of it. It got slightly bigger and harder but tests came back fine so doctors diagnosed it as a cyst and I was booked in for a non-urgent operation. Little did I know that the lump was actually a tumour which was rapidly growing.

I carried on as normal but I remember feeling really tired one evening. I woke up with a bad headache and my neck ached like crazy. I had other symptoms too such as sweating, feeling hot all over and a dodgy stomach which I now know was two tumours that had developed quickly in my abdomen and my bowel.

I went in for the operation to remove the ‘cyst’ from my neck and a week later I was diagnosed with stage 3 Burketts lymphoma, a type of cancer which is very aggressive. I went from stage 1 in May to stage 3 in two months. If I had gone to stage 4 then I wouldn’t be writing this today!

How did running help during treatment?I had always been active and running was my passion. It was my lifeline during treatment and it gave me back the control I needed when my life was spinning out of my control.

During treatment I ran about once a week. I’d run for years but felt like a complete beginner starting out for the first time. Two days before the Great North Run I tried to go out for a six mile run. I got to a mile and had to stop and walk back as I was just utterly exhausted. That was the day I learnt to listen to my head and not just my heart.

I tried to do little bits of exercise even if it was just in the lounge, or 10 minutes on the ski machine just to keep myself sane. There were days where I just sat on the sofa all day too exhausted to do anything except eat ice cream to keep weight on. I did what I could and felt better for it.

I ran the Great North Run in between chemo treatments. I felt like I crawled round but it gave me something positive to focus on while going through chemo. It wasn’t easy though. I had finished a 10-day cycle

of chemotherapy three days before I took part in the Great North Run.

Going through cancer has taught me how incredible the human body and mind really is and how to respect it with everything you have as one day you may need it to fight one hell of a battle for you.

Starting up a charityWhen I finished my treatment I tried to walk away from the world of cancer but I had learnt so much during my journey with cancer that last year I realised it was time to use my experience to help others.

From my own professional background, education, running and my cancer experience, I founded a registered charity called MOVE helping young people diagnosed with cancer to keep active.

MOVE provides young people who have or are recovering from cancer with individual 1:1 sports and physical activity support, guidance and advice. It’s aim is to enable children and young people to engage with physical activity in a positive way, helping build strong relationships with exercise and create healthy habits that will last a lifetime.

Launching in July, our work is focused in the East Midlands area and as we secure more funding we will use our expertise and research to branch out in the UK. Please visit our twitter page @MOVECharity and our website www.movecharity.org for more information on the work that we do and how to get involved.”

Running was my lifeline

Gemma Hillier-Moses, diagnosed with a rare aggressive cancer in 2012, talks about how running helped her cope with treatment and inspired her to start a charity helping children with cancer to keep active.

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Issue 71: Keeping active Contact 5

Keeping active .. it seems like it should be very easy! But, in

reality, staying fit and active during treatment can be very challenging.

As a physiotherapist working within the field of children’s oncology, my aim is always to keep children as active as possible. With less activity, other problems inevitably occur where joints become stiffer, muscles tighten and strength is decreased. All of which can cause pain and difficulty with movement leaving your child unhappy as they are unable to run around with their friends the same as before. Stress of treatment on the bodyThe treatment that children go through for cancer can be very demanding physically. The chemotherapy itself can have side effects causing pain, muscle tightness and fatigue. Certain chemotherapy also has specific physical side effects; cardio-toxic drugs can limit the amount of stress the heart can be put under, and others can affect the peripheral nerves causing loss of movement or sensation in their hands and feet. This can lead to difficulties with balance and body self-perception.

Radiotherapy can also cause significant fatigue or tiredness that may continue or even worsen after radiotherapy has been completed. If surgery is required, then this can bring its own particular side effects such as neurological damage, changes in muscle function and sometimes

the loss of a limb. Steroids can cause changes in mood and difficulties with weight gain but exercise can play a huge part in maintaining a healthy weight. Treatment has also been shown to cause a reduction in bone density. Exercise will help to maintain a child’s bone density and then improve it once treatment has been completed.

Aside from the treatment itself there are practical reasons that can make staying active challenging such as being isolated in one room, being attached to drip stands for long periods of time and having a Hickman line. But exercise can help and physiotherapy has a huge part to play in this. Why is it important to stay active?Physical activity and particularly exercise has been shown to increase the release of endorphins (the ‘feel good’ hormone) which helps to improve the feeling of wellbeing. Exercise can also improve a child’s confidence in their abilities. This is a huge part of my job: enabling a child to start doing more than they feel able to do.

Regular movement, even just getting in and out of bed every day, going to the play room or walking around the room, can be enough to help to prevent deterioration and can even help to relieve constipation, increase an appetite, maintain lung function and improve sleep patterns, all of which can be affected by treatment.

One of the big side effects of treatment as a whole is fatigue. Fatigue can be very debilitating and stop children from doing the things they love. Fatigue can be managed with the right integration, graded exercise and the guidance of a physiotherapist.

The majority of the children who are diagnosed with cancer have previously been fit and active, and at diagnosis it may be hard to predict the effect that treatment can have. Many parents have concerns about over-doing it and have lots of questions about what is the right thing to do.

Can my child still be active?The answer is usually ‘Yes!’ but how to do this varies depending on the needs and ability of each individual. Some children will have every side effect of treatment and will still be able to continue with PE, have regular school attendance and keep fairly active; for others it will be very debilitating and significantly limit the amount of movement they have.

How can a physiotherapist help? When difficulties arise, I will become involved and aim to provide effective assessment, advice and education. I will also closely monitor symptoms and pick up on any changes before they become problems.

Back to Basics

Lucy Buckley, Paediatric Physiotherapist at Bristol Royal Hospital for Children and CCLG member, discusses the importance of keeping active during and after treatment.

Keeping active

Lucy Buckley

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My role as a physiotherapist also includes:• Pain management• Provide exercises to help as

required to improve strength, improve muscle length, improve mobility and confidence

• Provide advice and education regarding re-integration into sport and exercise

• Help with developmental milestone progression

• Advise schools and local services

I love the fact that a huge part of my job is to make activity fun. I always try to make activity part of everyday routine and involve the whole family. The support of those at home is vital so that the messages being given to the child are consistent. Seeing children who may have been confined to their bed for weeks, attached to multiple lines, start to sit out of bed and want to play again is just as rewarding as watching another child run around the gym.

It is important to mention that, even with the best intentions, sometimes getting out of bed on some days may just be too much. There are always days when children will want to hide under the blanket and sleep all day . . . I do too sometimes! There may also be medical reasons such as an unstable blood pressure or very low platelets that prevent certain activity and it can be detrimental to do too much. My advice and intervention needs to be timely and sensitive to the needs of each individual child.

How do we start?Setting goals can be a great way to start increasing activity. I always try and get to know each child to find out what they enjoy, want to achieve and help set smaller goals along the way to achieve the final goal. Seeing them reach their goals, however big or small, is so special and I am proud to be a part of their journey. One mum said last week, “You coming in was a breath of fresh air” and comments like this really do make it all worthwhile. All children want to do is have fun and play, my job is to enable them to do this again.

S Specific What exactly do you want to achieve? (What, where, why)

Which park? Something he loves, always used to do with family on weekends. Currently unable as gets too tired.

M Measurable How will you know when you have reached your goal?

Will be able to get there in one go without stops.

A Achievable Can it be done? Will you need to make any adaptations?

May need to start with stabilisersMay need to take rests along the way

R Realistic Make sure that it isn’t too much in one go.

How far is the park?Are there hills?

T Time When do you want to achieve this goal

6 weeks

GOAL: To ride bike to the park with brother

Following treatment for cancer, the journey back to normality begins. Building up endurance can take a long time and needs to be done gradually. It is easy to become disheartened when progress is slow, but it takes the body a long time to recover from all the side effects. I am often involved with re-integration into PE in school,

joining new activity/sports clubs and often provide advice as required.

It is my job to help each child reach their potential and also to troubleshoot when times are challenging. I love being part of such a wonderful team at Bristol Royal Hospital for Children and to have worked with so many wonderful children and their families.

Top tips for improving activity!• Find something you want to do• Make it fun!• Build it into routine

• Start small• Build up slowly• Try things as a family

Example exercise plan• Heel raises in shoes• Seated exercise bike

in physiotherapy

• Calf stretches 2 x daily• Balance exercises• Strengthening exercises

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Issue 71: Keeping active Contact 7

For parents, hearing the life shattering words “your child has cancer”

pushes any thought of physical activity or sport far down the list of priorities. Even the thought of keeping your child active through cancer treatment may seem not only impossible but incredibly scary.

For children and young people with cancer, sport or exercise is often just another thing they feel they will no longer be able to do - either because they aren’t allowed, or because they feel physically unable to keep up. However, not only can it be safe for children to be physically active, but exercise has been proven to be extremely beneficial for those with cancer from diagnosis through treatment and into recovery.

Why is cycling good exercise?• Cycling is good for the heart: riding

a bike makes your heart stronger and has been shown to reduce the risk of coronary disease.

• Cycling is good for the muscles: riding a bike is great for toning and building of muscles, especially in the lower half of the body. It’s also a great low-impact mode of exercise for those with joint conditions or injuries to the legs or hips, which might keep them from being active.

• Cycling is good for coordination: in simple terms the apparently natural process of pedalling, balancing and steering requires multiple skills and when done at increased speeds improve with practice.

• Cycling is good for mental health: riding a bike has been linked to improved mental health.

• Cycling is good for the immune system: cycling can strengthen the immune system, and could protect against certain kinds of cancers.

How can CFC help? It is important for children to take part in an activity that they find enjoyable, exciting and interesting. Throughout treatment and recovery, there will be times when even getting out of bed will be a contest in itself. Times like this can be demoralising, but, by making adaptations, new rules or playing different roles within a team,

exercise can still be possible and fun. At Cyclists Fighting Cancer (CFC),

we encourage cycling as a great way to keep active in a low impact, sociable, and exciting way. Can you remember how exciting it was to get a new bike? Children feel a great sense of achievement from getting back out on their bike again, or even learning to ride for the first time. It’s a great way to spend time as a family or with friends and take the focus away from cancer and its treatment. The glorious feeling of pedalling as fast as you can, repeatedly ringing your bell or giving your favourite teddy a ride around the garden is something all children should get to experience, even those with cancer.

To make physical activity as accessible as possible, CFC awards bikes, tandems and specially adapted trikes to children and young people who have been affected by cancer throughout the UK. We can also give physical activity tips, advice and plans and suggest some ideas and inspiration on a range of accessible activities and sports- not just cycling! To get involved, join us at Rother Valley Country Park on Sunday 10th July for our #RideForUs Family Bike Ride suitable for all ages and abilities

For more information, visit www.cyclistsfc.org.uk

The charity Cyclists Fighting Cancer (CFC) explains how it helps children and young people living with cancer across the UK to regain their physical fitness, strength and confidence.

Helping children back into cycling

Cameron and his sister

Cameron

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Our ‘Do it for you’ (DIFY) day is for cancer patients at all stages of their

treatment and follow up. It was set up in 2012 to improve the fitness levels of our patients and encourage them to lead active lives.

The children’s oncology team were keen to develop a fun day where patients could trial many different activities in a safe and supportive environment that could then be continued within their local communities. The day is family orientated with siblings encouraged to join in and we also encourage patients to bring a friend to participate in the activities with them.

DIFY is jointly organised by a team from Sheffield Children’s Hospital and Sport Sheffield, University of Sheffield. Student volunteers from both Sheffield and Hallam universities help to facilitate the day. We have also had the continued support of local clubs and associations which have given their time for free. Hospital staff, who know the patients, also attend and participate on the day and provide encouragement and reassurance where necessary.

The day is held at the English Institute of Sport in Sheffield and patients can try a wide range of activities suitable for all ages and abilities. Sports on offer at in previous DIFY days include: football, cricket, tag rugby, tennis, table tennis, rowing, cycling, basketball, athletics, archery, martial arts and a climbing wall. We also offer disability sports such as wheelchair basketball and boccia, while Cyclists Fighting Cancer attend with a range of

bikes that can be ridden round the track on the day. A under-5s activity area is coordinated by physiotherapy students from Sheffield Hallam University and dance and music activities are provided for all ages. Art and craft and relaxation areas are also available.

After lunch, everyone can participate in a lap of the 200m track. Patients are encouraged to get round however they can, whether walking, running or wheeling and they are supported by parents, volunteers and staff - cheered on (usually with much emotion) by all the spectators in the stands. Races are also held for parents, volunteers and staff which usually generates different emotions and much laughter!

All young people are given a DIFY Passport on arrival and encouraged to collect stickers for every sport or activity they visit. Before leaving the day they then receive a medal in recognition of their amazing efforts. Further details about local sports and activity groups are given to families at the end.

Over the years, patients have become increasingly involved in the organisation and running of the day with regular attendees even becoming DIFY ambassadors. Last year, a couple of our young adult patients devised and organised a heptathlon style event for teenagers while one of our long-term survivors who plays in goal for his local ice hockey team also came back to Sheffield to offer a ‘Beat the Goalie’ opportunity.

We always receive positive feedback from patients and parents who are keen for the day to continue each year. Staff and volunteers also enjoy the day and love seeing patients enjoying themselves outside of the hospital setting. Although the day

allows our patients to relax and have fun, we also hope that by encouraging activity and exercise we can improve patients’ ability to cope with cancer treatments and promote the importance of healthy lifestyle choices in the future.

Fun sports day for young cancer patientsAnna Jenkins, Consultant Paediatric Oncologist, and Tanya Urquhart, Macmillan Clinical Nurse Specialist in Late Effects, at Sheffield Children’s Hospital talk about their successful annual sports and activity day for cancer patients.

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Issue 71: Keeping active Contact 9

RENEW is a 12-week physical activity programme that gives

people aged 16-39 who have, or have had, cancer the chance to work with top-level personal trainers to develop tailored exercise plans.

According to experts, the large majority of people living with cancer do not achieve the recommended guidelines for physical activity, often due to barriers such as inaccessibility, fear or a lack of knowledge*.

RENEW aims to combat these barriers by using personal trainers to show young people how to exercise safely and correctly in the comfort of their own home or in the gym.

The programme, which is jointly funded by Trekstock and CLIC Sargent, will last for one year (Jan-Dec 2016) across three locations: London, Southampton and Birmingham. The charity partnership hopes to gain funding to support another two years of the programme, which aims to expand to a total of 15 locations spread across the UK. A trial launch has already been held successfully.

Sam, 21, who had brain cancer, was part of the trial launch. He said: “Cancer treatment changed my body. I had lots of aches and pains and really bad fatigue. RENEW helped build my strength and my confidence back up. It has given me so much more energy and I’m eating better too. I have more motivation in life. Now, I go to the gym three times a week. Without RENEW I don’t think I would be as strong both mentally and physically as I am today.”

Katie, 31, who has chronic myeloid leukaemia (CML), said: “I live with a chronic form of cancer

CLIC Sargent and Trekstock have teamed up to launch an innovative physical activity programme called RENEW to help young people with cancer.

Keeping fit with personal trainers

* Physical activity and cancer: A cross-sectional study on the barriers and facilitators to exercise during cancer treatment, Fernandez S, Franklin J, Amlani N, DeMilleVille C, Lawson

Katie at the gym

which takes its toll every day. I think RENEW has helped me feel physically better and also improved my mental health. I think RENEW is important because you can do all the exercises at home which easier if you don’t want to go to the gym.”

Sophie Epstone, founder and CEO of Trekstock, said: “We recognise the important effects that physical activity has on major issues faced by young adults with cancer such as lack of confidence around body image, side effects of treatment and social isolation. RENEW empowers young adults to

take back control over their health.”Andrew Cooper, Assistant Director

of Services at CLIC Sargent, said: “Exercise is not only safe but is also hugely important in managing cancer symptoms often experienced during and after treatment such as muscular weakness, weight gain and fatigue.”

If you would like to learn more about RENEW, or know of anyone between the ages of 16 and 39 who have experienced cancer in the last five years who may want to participate in RENEW please contact: Lauren Hyden renew@trekstock.com or 0207 439 8607.

Top tipsDo what you canDuring treatment you may experience side effects that make you feel like not doing anything. Incorporating physical activity into your routine is about finding times when you’re feeling well. Pace yourselfYou may have good days and bad days with your cancer treatment. Pacing yourself on days you feel good will help you avoid struggling on days when your cancer or treatment makes you feel unwell. Be preparedKeep your gym clothes and trainers on hand to make the most of every opportunity. The sun may pop out anytime for a quick walk!

Little and often is the keyIt’s much better to do small amounts of physical activity regularly than big bursts of exercise once every few weeks. Get others on boardTalk to your friends, family and health team about getting them involved. Support from others can really help keep you motivated. Get motivatedMake a list of the benefits that are important to you. Put it somewhere you’ll often see to remind yourself when you’re feeling less motivated. Reward yourselfYou’ve put in the hard work, make sure you acknowledge it!

Sam

10 Contact Issue 71: Keeping active

www.cclg.org.uk

We talk to Kieran who is a teenage cancer survivor and gold medal winning sprinter.

One on One with Kieran Maxwell

One reason to keep activeEven though I was very fit because of my gymnastics, keeping active made tolerating the chemo a bit better and gave me something to fight with when I had my stem cell transplant. Cancer took away my leg and part of my lung but it increased my drive to show what oncology kids can do.

One thing that makes you laughOne thing that makes me laugh is the way people think that because I have a disability I can’t do things. I am very lucky that with the help of my parents, friends, family, college support staff and my running club, I will always have the help and support to achieve anything I want to do. 

One proud momentBeing selected to be part of the Parallel Success Academy. This academy is the bridge between the grass roots and moving up to the Development Squad and Paralympics. I didn’t believe that I was any good at my running even though I was told I was developing well. I believed that the stem cell transplant had taken everything away from athletically. I am proud to be part of this Academy.  

One favourite filmMy favourite film is Star Wars, I have been brought up on it because it is one of my dad’s favourite movies and it was something we can do together. On Boxing Day we went to see Star Wars

VII and it was great being able to spend time with my dad. It’s things like this that make you realise what is important after a life threatening diagnosis.

One message to patientsLife is too short to worry and if you have time to worry then run! 

One important influenceOne important influence in my life is Shelley Holroyd. She’s believed in me even though I was ready to give up. She inspires me to be the best that I can by pushing boundaries. 

The wide variety of articles published during the year in Contact adds up to a valuable and informative reference archive. If you would like any back issues, please contact the Editor (address page 2).

Details of key articles in previous editions are listed on the web at www.cclg.org.uk

Previous themes:

ABOUT RESEARCH Issue no: 69 / Dec 2015

ACHIEVEMENT Issue no: 57 / Dec 2012

AWARENESS Issue no: 64 / Sept 2014

BEST OF CONTACT Issue no: 50 / March 2011

BLOOD Issue no: 63 / June 2014

CELEBRATION Issue no: 50 / March 2011

CHEMOTHERAPY Issue no: 65 / Winter 2014

COPING STRATEGIES Issue no: 37 / Dec 2007

DEALING WITH DIAGNOSIS Issue no: 68 / Sept 2015

DIAGNOSIS Issue no: 47 / June 2010 EMOTIONS Issue no: 43 / June 2009

EMPLOYMENT Issue no: 42 / March 2009

EMPOWERMENT Issue no: 53 / Dec 2011

ENJOYING LIFE Issue no: 70 / March 2016

FAMILY AND FRIENDS Issue no: 46 / March 2010

GOOD IDEAS Issue no: 48 / Sept 2010

IDENTITY Issue no: 52 / Sept 2011

ISOLATION Issue no: 51 / June 2011

MEDIA AND COMMUNICATION Issue no: 58 / March 2013

MOVING ON Issue no: 62 / March 2014

MOVING ON AND CHANGES Issue no: 41 / Dec 2008

NORMALITY Issue no: 55 / June 2012

NETWORKING Issue no: 38 / March 2008

NUTRITION Issue no: 39 / June 2008

OVERCOMING CHALLENGES Issue no: 61 / Winter 2013

PARENTS AND CARERS Issue no: 59 / June 2013

PLAY/ENJOYMENT Issue no: 35 / June 2007

PROGRESS Issue no: 60 / Sept 2013

RADIOTHERAPY Issue no: 40 / Sept 2008

REHABILITATION Issue no: 45 / Dec 2009

RELAPSE & REMISSION Issue no: 36 / Sept 2007

SUPPORT NETWORKS Issue no: 56 / Sept 2012

SUPPORTIVE CARE Issue no: 33 / Dec 2006

SURGERY Issue no: 44 / Sept 2009

SURVIVORS Issue no: 34 / March 2007

TESTS & SCANS Issue no: 67 / June 2015

TRANSITION Issue no: 49 / Dec 2010

TRANSPLANTATION Issue no: 32 / Sept 2006

TREATMENT Issue no: 54 / March 2012

www.cclg.org.uk

Issue 71: Keeping active Contact 11

Marc Woods, Paralympic swimming champion and teenage cancer survivor, remembers the nerves and excitement of winning his first swimming race after his amputation surgery.

A helping hand for families of children and young people with cancer

I wanted to be the best I could be”

ContactSpring 2016 Issue 71: Keeping active

Marc Woods

It was only when I came face to face with cancer as a 17-year-old that I decided

to be passionate about life and not just let life happen to me. The day after I had my stitches removed, I was off to my local swimming pool.

In my early teens I was a good swimmer at county level. I loved competing, but never took training that seriously. But then came bone cancer, chemo and amputation. Everything changed. Suddenly I needed to get back into the pool to something that I knew I could do, despite only having one leg.

If I was good enough to race for my county, I figured having one leg wouldn’t prevent me from swimming reasonably well. I had no idea how my life was going to change, but I was sure I was going to be able to swim. I wanted to be the best I could be at swimming.

In between my fifth and sixth chemo course, my Dad took me to the local swimming pool to watch my school team compete in a gala. By this time I’d been swimming a few times since the amputation and always at this pool.

I loved everything about going to the pool: smell of the chlorine, sound of the water and noise from the spectators. Sitting in the gallery was strange - I wanted to be in the water!

I waved to my teacher and told him I would rather be swimming than watching. Although my last chemo had been delayed due to a low white blood count and I only had three more days to go before my final chemo session, my Dad and my teacher allowed me to swim.

I left my leg and my clothes with Dad and made my way to the poolside using my crutches. I chatted with friends and watched the other races. Just being there, alongside the rest of the school team, was exciting. As the competition heated up, so did my nerves - the atmosphere was electric.

Then it was time for my race – the 100m backstroke over three lengths of the pool. My teacher walked to the lane with me and left me sitting on the chair.

As I hopped a couple of times to the edge of the pool, there was a sudden silence. Plenty of people knew I had been unwell; some did a double take when they saw how thin I was and how ill I looked.

As I jumped into the water in my ill-fitting borrowed goggles and trunks, and my newly acquired stump, everyone was staring at me.

I balanced myself on the starting block. Up until then, any exercise I had done over the previous few months had been recreational. Now I was taking a big risk in front of all those people.

The starter fired his gun. Given the circumstances, my start was surprisingly good. I was just in the lead. And then we came to the turn.

I had no idea whether I could still turn properly with one leg. More to the point, I was worried about banging my stump against the side. I knew how painful that would be. So when it came to the first turn I took it very carefully, almost in slow motion.

By the time I was back into my stroke, I could see other swimmers had caught me. The next turn had to be smoother and faster. I put the fear to the back of my mind and whipped round as fast as I could. No pain. When I came up, I was ahead. From there to the finish, I just pushed as hard as I could and hoped.

I touched the wall and quickly glanced both ways. I heard everyone cheering. I had won my first race back. It felt great!”[Edited extract from ‘Personal Best’ by Marc Woods, winner of 12 Paralympic medals]

Marc is retired from swimming and now travels the world as a motivational speaker.

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Share your story!If you would like to share your story in Contact or have an idea for a theme for us to cover, please let us know - info@cclg.org.uk

Next issue of ContactDue: 1st September 2016Theme: Now and Then