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sarcoma.org.uk
Summer 20 16The bone & soft tissue cancer charity
4 Run LondonTeam Sarcoma smash their fundraising targets as they cover 26.2 miles of the marathon
100,000 GenomesGround-breaking research project to include sarcoma10 Sarcoma Story
Inspirational cancer patient Andy Roast never lets his diagnosis define who he is 14
IT’S OFFICIAL…
10 Downing Street chooses Sarcoma UK
as their Charity of the Year in tribute to
Chris Martin
Connect • Sarcoma UK • Summer 20 16 sarcoma.org.uk
Sarcoma UK’s key facts
2
There’s so many exciting things going on in the
Sarcoma UK world that I don’t even know where to begin! The first extra special announcement is that we have officially been chosen as No 10’s Charity of the Year. This partnership is a legacy to a charity friend and loyal supporter, Chris Martin, who was Principal Private Secretary to the Prime Minister. Together we will increase sarcoma awareness – read more on page 8.
I would also like to give a huge round of applause to our inspirational team of runners who ran 26.2 miles of the London Marathon to raise much-needed funds! Each runner had a very emotional story to tell, you can read more on page 4. One member of Team Sarcoma even ran dressed as a golf ball to highlight our ‘On The Ball’ awareness campaign. Think you’ve got what it takes to run it too? You can find out how to apply for next year’s race on page 5.
We ran a poll of the general public in 2015 and it informed us that 53% of people have never heard of sarcoma, which makes Sarcoma Awareness Week a very important and necessary date for your diary. From Monday 4 July to Sunday 10 July, we have lots of exciting fundraising and awareness campaigns launching, find out more on page 3.
Thank you for your continued support, it really does make a difference and helps us to continue to push boundaries and ensure you get the right information and help when it is needed.
Best wishes.
Sarcoma UK is the only charity in the UK focusing on all types of sarcoma. That’s our purpose, that’s why we are here.
Our mission is to increase knowledge and awareness of sarcoma through ground-breaking programmes that inspire involvement and transform the landscape for everyone affected by sarcoma.We are here to provide credible, high quality information about sarcoma to everyone affected by sarcoma. We are here to lend support and answer questions.
We are here to improve survival rates by promoting early diagnosis and ensuring all diagnosed patients are aware of their treatment pathway.
We are here to educate GPs and the public on the signs and symptoms of sarcoma so patients are diagnosed earlier.
We are here to ensure that patients are not alone during their diagnosis and treatment. By working with all members of the sarcoma community – patients, carers, supporters, health professionals and researchers – we share information and work collaboratively.
We are here to get sarcoma on the political agenda. We can empower patients to ask questions about this rare cancer and get their voices heard.
We are here to guide and inspire supporters to maximise their fundraising and show them exactly how we spend their money.
Ultimately we are here to find a cure for sarcoma. The research we fund adds to the knowledge base in sarcoma, provides evidence to support changes to practice, and supports potential breakthroughs to bring improvements to patients with this cancer.
What is sarcoma?Sarcomas are rare cancers that develop in the muscle, bone, nerves, cartilage, tendons, blood vessels and the fatty and fibrous tissues.Sarcomas fall into three main types:
1. Soft tissue sarcoma2. Bone sarcoma3. Gastrointestinal stromal tumours (GIST)
• There are around 100 different sub-types of sarcoma • About 3,800 new cases of sarcoma are diagnosed each year in the
UK which makes up approximately 1% of all cancer diagnoses:– 3,330 people are diagnosed with a soft tissue sarcoma
(including GIST)– 500 people are diagnosed with a bone sarcoma
• 10 people every day are diagnosed with sarcoma in the UK
• Sarcomas make up 15% of all childhood cancers (0-14 years)
• Sarcomas make up 11% of all cancer diagnoses in teenagers and young people (15-24 years)
• In general, patients with a bone or soft tissue diagnosis tend to be younger than the majority of cancer patients
• In Scotland, just 180 new cases of sarcoma are diagnosed each year
Lindsey Bennister Chief Executive
• In Northern Ireland, 100 new cases of sarcoma are diagnosed each year
The most common sarcoma sub-types are:Soft tissue sarcomas
• Leiomyosarcoma• Fibroblasticsarcoma• Liposarcoma• Gastrointestinalstromaltumour(GIST)• Kaposi’ssarcoma(KS)• Angiosarcoma• Malignantperipheralnervesheathtumour(MPNST)• Synovialsarcoma• Rhabdomyosarcoma
Bone sarcomas• Chondrosarcoma• Osteosarcoma• Ewing’ssarcoma• Chordoma
sarcoma.org.uk Connect • Sarcoma UK • Summer 20 16
Sarcoma Awareness Week Monday 4 July–Sunday 10 July 2016 July marks International Sarcoma Awareness Month, and during that period is our very own Sarcoma Awareness
Week. So get the date in your diary and get involved to raise awareness and support the sarcoma community.
A poll of the general public we ran in 2015 informed us that 53% of people have not heard
of sarcoma and only 26% knew it was a cancer.
We need to amplify sarcoma awareness and we need your help. The ask is simple: •Like and share our film “What is sarcoma?” (released 4 July) •Tell five friends that sarcoma is a cancer of the bone and soft tissue. This can be as simple as sending an email to five people.
By spreading the word, you can help people to receive an early diagnosis and ultimately save lives. The more sarcoma aware we are as a nation, the more we can empower people to get any lump checked out with their GP, and promptly.
There are many other ways you can get involved: organise a
SAW2016
3
fundraiser, share your sarcoma story or visit your GP with our ‘On the Ball’pack.Readmoreon our website: sarcoma.org.uk/get-involved/saw2016
So mark the date in your diaries and keep your eyes peeled on our website, particularly on 4 July when it all kicks off!
During Sarcoma Awareness Week, we
will launch a very special ‘Sarcoma and You’ online
photo exhibition, which will challenge perceptions
about cancer and body image.
@sarcomaandyou #sarcomaandyou
Look out for more photos and stories on 4 July
Photo of Holly Hamer for Sarcoma and You portrait series by Alison Romanczuk
Read more about sarcoma facts here: sarcoma.org.uk/sarcoma-uks-key-facts
Connect • Sarcoma UK • Summer 20 16 sarcoma.org.uk
The inspirational #teamsarcoma marathon runnersFrom running dressed as a golf ball to following in family footsteps, our biggest ever Team Sarcoma pushed
boundaries and their bodies to transform the landscape for everyone affected by sarcoma.
4
Fundraising
What a marathon! 2016 saw 30 runners support Sarcoma UK in the London Marathon and
each had an inspiring story to tell. Thank you to each and every one of you! And thanks too, to everyone who came to our two cheering points, at mile 12 and 25, to give some much-needed encouragement to our team as they conquered those infamous 26.2 miles!
Thanks so
much to everyone who ran for
Sarcoma UK, #teamsarcoma
take a bow!Alex Ferguson, 4:11:34Barry Colley, 5:00:16
Bonnie Holdcroft, 3:27:51Cameron Kavanagh, 3:38:04
Carl Wood, 5:15:13Chris Mayne, unknown
David McSweeney, 4:26:56David Shawe, 4:07:06
Deborah Ebbrell, 6:08:46Dirk Strauss, 4:00:17
Edward Taylor, 4:00:09James Arrowsmith, 2:59:57
James Read, 6:05:45Joanne Kerr, 5:44:20
Joel Silverman, 2:59:13Keith Walmsley, 4:30:05Kerry Buckland, 7:14:50
Lorna Reeves, 4:21:11Louise Charlesworth, 4:00:35
Marco Ferri, 4:35:04Mark Gardiner, 6:10:38Megan Davies, 4:35:39
Michelle Harris, around 4:45 Nancy Stringer, 4:59:58Nick Stone, 3:45:37
Nikki Reeves, 4:19:42Rachael Donnelly, 4:13:16
Ray Hill, unknownRichard Pepper, 3:17:59Victoria Payne, 4:27:04
James Read“I ran for my wife who was diagnosed with sarcoma, just two months after
we got married.”
James donned a specially made giant golf ball costume to raise awareness of our ‘On the Ball’
campaign to highlight sarcoma to GPs across the country. Straight
after the race, James rushed to be with his wife in hospital.
Michelle Harris“I ran London for my friend Katherine Stittle, we both used to apply every year, but never got a place. When we realised she would never be able to run it herself, I told her that one day I would run it for her.”
Michelle even dyed her hair pink for the occasion, even though it is her least favourite colour, it was Katherine’s favourite and a colour she would have dyed her own hair had it ever grown back. Michelle set herself various fundraising targets and reaching £2,000 was marked with the change in hue.
Nancy Stringer“I ran my second London Marathon in a bid to continue to raise awareness and money for such a worthy cause.”
Nancyraninsupportofhersister,Hope,whoisgoingthrough sarcoma treatment.
Nancywashappytofinallyrunasub-five-hour marathonandraisemorethan£11,000.Hersupportmeans we can raise more awareness among GPs and
the public, helping to ensure all sarcoma patients receive an early diagnosis.
Weapplaudyou,Nancy.
Search the cleverly created hashtag #cancerhasnoHOPE
on Instagram
sarcoma.org.uk Connect • Sarcoma UK • Summer 20 16
The inspirational #teamsarcoma marathon runners
5
Fundraising
Think you can do it too? Feeling inspired and ready to run for a reason? Applications to join #teamsarcoma for next year’s London Marathon are now open.
020 7250 8271 sarcoma.org.uk/running
Victoria Payne“Clinical trials and sarcoma
research gave our family time to create some wonderful memories together. It goes without saying
the importance and meaning this charity has for us as a family.”
Three sisters, three years, three marathons... Victoria followed in the footsteps of
her sisters by completing the London Marathon as part of #teamsarcoma. She ran in
memory of her mum, who Victoria said wouldn’t believe she could
run a marathon! Dirk Strauss“I know the people at Sarcoma UK very well and wanted to support the amazing work they do. Most of my donations actually came from my patients, which I thought was very nice!”
Sarcoma surgeon Dirk swapped his scrubs for a running vest and chose to run his third marathon as part of Team Sarcoma.
Lorna Reeves“My friend Vicky passed away from sarcoma and I promised I
would run the marathon for her.”
Keith Walmsley “I normally run marathons for fun, but this one was for my daughter Kayla, who has rhabdomyosarcoma.”
Richard Pepper “You cross that line and you know
you have done something special.”
Richardgota‘GoodForAge’marathon spot and dedicated
it to Sarcoma UK.
Lorna was thinking about her friend during the tough parts of her run and felt motivated knowing that she had raised much-needed funds to support sarcoma research. Lorna smashed her fundraising target by raising more than £4,000. She even wrote the names
of people who sponsored her more than £26 on her arm, so they were running with her! Go, Lorna!
Connect • Sarcoma UK • Summer 20 16 sarcoma.org.uk6
Dance all night and take a dip in the sea!Our creative fundraisers get up to all sorts to raise cash for Sarcoma UK
– take a look at this inspirational lot.
New Year’s Day dip Chris Lawrence braved the cold water andtookaNewYear’sDaydipinthe sea in memory of her nephew. She raised more than £400.
Fundraising
Let’s dance! Members of Belle and Sebastian, Teenage Fanclub and The Wellgreen teamed up to perform as part of a Glasgow All-Star Band at a 12-hour sponsored danceathon.
The charity danceathon, held at the Flying Duck in Glasgow in February, required one member of each participating pair to be on the dance floor at all times.
The dedicated boogying raised an incredible £11,000 for the sarcoma community. A huge thank you to the organisers Daniella and Holly!
Paul’s London Half MarathonPaulMillsrantheNorthLondonHalfMarathon, achieving a new personal best and raising £80.
Dancing the night away... Photo by Robert Smythe
Team Hope runs half marathon
Forty-one friends and familyofHope
Stringer, who was diagnosed with sarcoma in 2014, formed a team to runBrentwoodHalf
Marathon in March. TeamHopesmashed
their fundraising target, raising over £15,000.
#teamhope #cancerhasnoHOPE
Wendy’s first marathonWendy Arnold completed the Manchester Marathon, her first one ever, for Sarcoma UK.
Team Fairlawns’ Ram RunTeam Fairlawns completed a very muddyRamRunchallengeinsupportof a team member, raising £1,000. Go, team!
Team Hope
Wendy with her medal
Team Fairlawns
William’s cross-country marathon William Balchin completed the Belvoir Challenge, a cross country marathon, in 4 hours and 24 minutes. Heraised£600.
sarcoma.org.uk Connect • Sarcoma UK • Summer 20 16 7
Meet Karen FisherKarenisbasedattheFreemanHospitalinNewcastleUponTyne.Hereshetellsusmoreaboutherworkas aClinicalNurseSpecialistforboneandsofttissuesarcomaservices.
What is a typical work week like for you? Each week presents different challenges in between timetabled clinics on Mondays, Wednesdays and Fridays. These consultant-led clinics are attended by 30+ patients at any one time. They are spaces for us to manage patients’ wounds and also provide a support network for them. We try to support every aspect of recovery, we use our experience to observe and manage every patient.
Outside of clinics our workflow is more flexible, directed by patient and service need. A patient might call us with concerns at any time. We try, if we can, to alleviate them or offer reassurance and, if need be, bring them to the next available clinic. We believe it is important that patients have direct access to us when possible. We also advocate patients to talk to other patients, if they so wish, to share their experiences.
What do you find to be the most challenging part of your work? It is really difficult to tell someone they have cancer. But I think that when that gets easy, it means you’re in the wrong job.
What do you like most about your job? The patients, the flexibility and working as part of a great team. Trying to make a difference. I feel very fortunate to work at the job I do,
Karen is always on call for her patients
and work alongside my colleague Liz. Yet I believe there is always room for improvement within our roles.
What do you hope a newly diagnosed sarcoma
patient would gain from your
service? Support,
confidence, reassurance
– just knowing that we are around and here for them.
What are the
most common
questions that patients
ask you? And how do
you respond? “Why me?”“Where have I got it from?” It is very hard for me to answer these questions, I mean where can you possibly even begin? The most important thing is not to give any false hope, but also not to take any hope away.Hopeissoimportant, but above all I aim to be truthful and honest to all my patients. I tell them that they are here to be treated and that is what we can provide. There’s also the patients who don’t want to know anything, I guess that is their coping mechanism.
You have recently been on a three-month sabbatical, where did you go? Yes, I decided I need a break, I have always worked full-time and never had any extended time off, so I booked a trip to Thailand, Laos, Vietnam and Cambodia. There were many highlights of the trip but for myself the trip to an elephant orphanage and feeding the baby elephants was fab. I travelled by all forms of transport – including an overnight sleeper train – some better than others.
The trip opened my mind further, which I think really helps with my work, too. Life is so precious. I am very aware of how the news I often give to people affects their lives – and I don’t mean just telling someone that they have sarcoma and giving them a cancer diagnosis, but some people require extensive limb sparing surgery or even amputation. This can save their lives but have an enormous impact on their quality of life.
How else do you look after yourself? Well, as I am partial to chocolate and have a good appetite, I cycle to work daily and I love walking.
How do you protect yourself
emotionally, especially separating your work from your personal life? I used to work solo, but
now I have a part-time colleague and we help
each other out and talk to each other, which has been
amazing. Other than that: friends who I don’t talk hospital with, walking on the beach and a nice cold glass of lager – perfect.
“It is difficult
to tell someone they have cancer. But when that gets easy,
it means you’re in the wrong job.”
ResearchIn the hot seat
Connect • Sarcoma UK • Summer 20 16 sarcoma.org.uk88
10 Downing Street chooses Sarcoma UK as their Charity of the YearThe staff at the Prime Minister’s
Office, 10 Downing Street, have chosen Sarcoma UK as their
Charity of the Year, in memory of Chris Martin, Principal Private Secretary to the Prime Minister, who passed away fromsarcomainNovember2015.Chris ran the Virgin London Marathon in 2015 for Sarcoma UK, and was a passionate and loyal supporter.
Speaking of the partnership David Cameron said: “It is an honour to support Sarcoma UK, a cancer charity very close to my heart. Having lost Chris to sarcoma, we have seen first-hand the devastating effects of this disease. No 10 is proud to raise funds and awareness of sarcoma, helping Sarcoma UK to save lives and ultimately find a cure.”
The Prime Minister also paid tributetoChrisintheHouse of Commons, saying he was “someone between a father and a brother to all of us”, and “one of the most loyal, hard-working, dedicated public servants I have ever come across”. Watch a film of the moving speech here: sarcoma.org.uk/No10
Chris’ co-workers started fundraising by placing Sarcoma UK collection boxes around 10 Downing Street.
In April, ‘Team 10’ completed a 12-mile assault course, Tough Mudder London West, to officially launch the partnership. They showed strong mental and physical strength to navigate the muddy obstacles, 10,000 volts of electricity, and a mind-numbing ice bath. So far they have raised £8,000 towards their annual goal of £15,000. Chris’ family, friends and Sarcoma UK staff went along to cheer on ‘Team 10’.
Lindsey Bennister, Chief Executive, Sarcoma UK said: “Chris made a huge
Chris Martin running the 2015 London Marathon
Announcement
sarcoma.org.uk Connect • Sarcoma UK • Summer 20 16 99
10 Downing Street chooses Sarcoma UK as their Charity of the Year Chris Martin’s legacy – Sarcoma UK and
10 Downing Street team up to raise awareness
Stay updated in Connect, or visit our website sarcoma.org.uk/No10
10 Downing Street organised
a Great British Bake Off for
Sarcoma UK, judged by chef
Paul Hollywood and 2015 winner Nadiya Hussain.
The Prime Minister even
tweeted about it!
Team 10 took on Tough Mudder to mark the start of the partnership
Announcement
Speaking
of the partnership David Cameron said: “It is an honour to support Sarcoma UK, a cancer charity very close to
my heart.”
impact on the charity’s team and built up personal relationships with the wider sarcoma community. Chris ran the London Marathon only last year. It was poignant to see ‘Team 10’ show the same grit and determination in taking on Tough Mudder, a year later. We are very privileged to have their support and we look forward toworkingcloselywiththeHouse.”
10 Downing Street have a calendar of activities planned to support Sarcoma UK throughout the partnership to fulfil Chris’ legacy.
Connect • Sarcoma UK • Summer 20 16 sarcoma.org.uk10 sarcoma.org.uk
Research
The 100,000 Genome ProjectMapping the sarcoma genome – this ground-breaking initiative, launched by the Prime Minister, may lead to more effective treatments and new medical research.
This ground-breaking initiative was launched by the Prime Minister, David Cameron, in
2012 with the aim of sequencing 100,000 genomes of patients and their families affected by rare diseases, and also patients with cancer. The hope is that it will lead to the establishment of a new genomic medicineservicefortheNHS–transforming the way people are cared for. It may help with diagnosis, and longer term may lead to new and more effective treatments and new medical research.
Recently,sarcomahasbeenaddedinto the programme, with 500 genomes to be collected by 2017.SarcomaUK’sResearchAdvisoryCommittee member, Professor Adrienne Flanagan (UCL Cancer Institute – Group Leader of Genetics and Cell Biology of Sarcoma, and Consultant Pathologist and ClinicalLeadRoyalNationalOrthopaedicHospital)istheleadresearcher for the sarcoma element oftheproject.Here,wegiveaninsight into the project and what this means for sarcoma.
Why do genetic research? Most of us have heard of genetics and how diseases can be inherited through genes passed down through our families. We know that genes work in groups and their activity is influenced by a huge variety of environmental and other factors. WealsonowknowthattheDNAbetween your genes is also very important. Every healthy cell in your body has a complete set of genes. One set of all these genes (plus theDNAbetweenthe genes) is called a genome. Genomics is the study of the whole genome, what it’s made
up of and how it works.
What is the background to the 100,000 Genome Project? It was launched in 2012 to sequence 100,000 whole genomes by 2017. It’s currently the largest national
sequencing project of its kind in the world.
How will this project transform research? By linking an individual’s genomic
data with their medical record it can help us to understand disease and to tease apart the complex relationship
between our genes, what happens to usinourlivesandillness.Researcherswill study how best to use genomics in healthcare and how best to interpret the data to help patients. The causes, diagnosis and treatment of disease will be investigated.
What sarcoma subtypes are being included? As sarcoma has an initial allocation of 500 genomes, researchers have had to be very selective about which types of sarcoma they look at. With 3,800 sarcoma cases diagnosed every
“Genomics can predict how
well a patient will respond to a treatment
or find one that will work best for
them.”
Professor Adrienne Flanagan
sarcoma.org.uk Connect • Sarcoma UK • Summer 20 16 11
Research
year and over 130 subtypes, they need to analyse 100 samples of each type to have significant information to analyse and they should be able to glean a lot of information about the disease.
The project will look into the sarcoma subtypes of: • Myxofibrosarcoma• Leiomyosarcoma • Synovial sarcoma
Some exceptionally rare sarcomas have been chosen, which have only
Sarcoma UK funds high quality research to understand more about sarcoma, find new treatments and ultimately identify a cure for these cancers. Since 2009, we have awarded over £1 million in scientific and medical grants to better understand these rare cancers.
This year, thanks to your donations, we will invest £500,000 into research, our largest annual call to date.
We will be funding research that covers:• Quality of Life – research into factors which affect
care and rehabilitation• Clinical – research into patient focussed treatment
and care• Basic – research that tries to find out how something
works. It usually happens in a laboratory and involves carrying out experiments.
Searching for a cure
10 cases a year in the UK, such as alveolar soft part sarcoma and spindle cell rhabdomyosarcoma. This will help researchers to understand the disease at the genomic level and build a platform for more research to take place.
What can genomics do for patients? Genomics can predict how well a patient will respond to a treatment or find one that will work best for them. It can also be used to test how well a cancer might respond
to radiotherapy, which may mean fewer radiotherapy sessions.
What can patients do to get involved in the 100,000 Genome Project? As with all research, patients can ask anyone involved in their healthcare about taking part in the 100,000 Genome Project. With your help, researchers can find answers sooner.
For more insight into our current research projects visit sarcoma.org.uk/research
Connect • Sarcoma UK • Summer 20 16 sarcoma.org.uk12
Support & information
12
Counselling and cancerFeelingthatdreaded“scanxiety”?MacmillanTherapeuticCounsellor,CarolHughes,offerssomewordsofencouragement and tells us about the benefits of seeking counselling.
If you or someone close to you has received a diagnosis of cancer, then you will know what a difficult
experience that is. We all react differently, and our reactions depend on many different things. Because sarcoma is so rare, it may have taken a long time for it to be diagnosed, which can be upsetting in itself. Your reactions will also be affected by your age, sex, personality, culture, any previous experiences you may have had with cancer, the support and resources you have available to help you and, of course, what else is going on in your life. Cancer may also bring money worries.
And whether you are the patient or someone close to the patient, the psychological impact of cancer is verysimilar.Researchhasshownthatrates of anxiety and depression, both in the short and longer term, are very similar in both groups.
Sometimes, especially in the early days, it is difficult to discuss how you are feeling. You may be in shock and feeling numb or perhaps all kinds of thoughts and feelings are whirling round: “Why me?”, anger, anxiety,
hopes and fears. It is common to attempt to protect those closest to you by pretending to be more
positive than you may actually feel, but this strategy can leave individuals feeling isolated with their feelings.
Your cancer nurse specialist and doctors will be able to answer many of your questions about your disease and your treatment. They will also be able to listen to how you are feeling. They may reassure you that your reactions are normal – and sometimes that is enough. But if you, or they, feel that your level of distress is such that you would find it helpful to speak with a counsellor, then a referral for counselling should be made. Your counsellor will provide a non-judgemental space in which to explore your feelings, safe in the knowledge that what you say won’t be shared even with your clinicians, unless you ask for it to be. You will have the time and help to clarify, even rehearse, what it is you would like to say to others.
In your counselling sessions you will be encouraged to speak openly and without any sense that you need to be positive or brave. You will also be encouraged to identify fearful thoughts for what they are. A thought is not a fact, but it can certainly feel like it. Our minds are hardwired to look for threats and it is normal to run disaster movies in your mind. But this natural inclination can
cause great distress. Understanding how the mind and body
work and how to calm them is an important
skill. Learning techniques like relaxation, mindfulness meditation and guided imagery will
help you respond to physical and
psychological difficulties more skillfully.
“Research has shown that
practising mindfulness meditation produces reductions in anxiety,
depression and pain and offers improvements
in a sense of wellbeing.”
Counsellor Carol Hughes
sarcoma.org.uk Connect • Sarcoma UK • Summer 20 16
Support & information
13
Mindfulness meditation has been in the press a lot recently and you may wonder what it is all about. Essentially it is about learning a set of practices that help you to be with your experience as it unfolds in an open, warm and non-judgmental way. Researchhasshownthatpractisingmindfulness meditation produces reductions in anxiety, depression and pain and offers improvements in a sense of wellbeing.
These attitudes and skills are helpful not only during the period of diagnosis and treatment, but afterwards too, regardless of whether your treatment was successful or not.
Living with not knowing what the future holds is part of the human condition, but cancer survivors often suffer greatly from the uncertainty of their future. “Scanxiety” may emerge, looming hospital follow-up appointments can be cause for dread and any unusual sensation can assume sinister overtones.
You may need help to learn to how to balance looking after your health with widening out your life again. You may need support as you grieve the losses caused by the cancer. You may also find, perhaps to your surprise, that the profound experience of facing your mortality brings gains as well as losses as you re-evaluate the meaning of your life and what matters to you. All these are themes you could fruitfully explore with your counsellor, but how the sessions are used will always be your choice.
“You will be encouraged to identify
fearful thoughts for what they are. A thought
is not a fact, but it can certainly feel
like it.”
If you think you would benefit from the services of a cancer counsellor, talk to your clinical nurse specialist. Your GP can also refer you to local counselling services or you can call our support line.
Sarcoma is a rare cancer and many patients and families find it difficult to find information. We can change that.
Sarcoma UK is here for every person affected by sarcoma. Talk to us or email for
information and support.
“Thanks for the reply, today has been full of stress and anxiety about what comes next so your reply puts structure around the big scary unknown ahead. Thank you.”
Support Line0808 801 0401
SarcomaUK
Opening hours:Monday 10am - 2pm
Tuesday Midday - 4pmWednesday 10am - 2pmThursday Midday - 4pm
Friday 10am - 2pmIf you call out of hours or the line is busy, leave a
message. We’ll try to get back to you within 48 hours.
Our support line is independent and confidential
We believe no question is a silly question
We lend a listening ear
We can point you in the right direction
sarcoma.org.uk/supportline
The service is available to anyone affected by sarcoma throughout the UK, and our team has
up-to-date information about sarcoma for patients and families in the devolved nations of Scotland,
Wales and Northern Ireland.
“The support and advice you’ve given me in just a few days has made a huge difference.”
Connect • Sarcoma UK • Summer 20 16 sarcoma.org.uk
Sarcoma stories
14
‘Don’t let diagnosis define you’AyearandahalfagoAndyRoast,27,waslayinginahospitalbed,nowhe’strainingforaLondontoPariscycleride. It’s all about setting yourself goals.
My first experience of cancer was back when I was just 12 years old. I had a pre-
cancerous lump removed from my femur, then I had a metal plate put in place to support me. Since then I’ve always felt some sort of pain – especially when it’s cold. I just put that down to the metal, or maybe it was all in my head, who knows?
But it was from around 18 months before my sarcoma diagnosis, when I was 24, that it started to hurt all the time, like a dull, constant ache. At the time, I was training for a half marathon, so I just put the pain down to that. I went to see my GP in August 2013, told him I was in pain and had had a lump removed 12 years previously, and asked if they should check it out. After a few weeks, I was referred to an orthopaedic surgeon foranMRIscan,thiswasNovember2013. A week after that, surgeons still weren’t sure what it was, but I knew it was cancer.
My diagnosis in April 2014 met me with a sense of relief. I’m not sure how I was supposed to feel, you read stories about people being devastated and their lives turning upside-down, but honestly, I was just glad to know what was wrong with me. My sarcoma type was grade 2 chondrosarcoma in my pelvis and femur.
I didn’t receive treatment until September 2014 because the surgeons needed to observe what happened to my tumour over the course of those months. They weren’t sure if it would grow, and if it didn’t grow at all, my treatment would be different. During this time, I carried on with life with a vague sense of normality. I went to work every day, living with the constant pain in my leg and just icing it when
it got really bad. A follow-up
appointment early in 2014 showed that the tumour hadn’t grown, which was a relief.
By my second observation in July, my tumour had grown. This meant I needed a hemipelvic and proximal femoral replacement operation (I describe this to my friends as a hip replacement on
steroids). I think I was a little naïve going into hospital,
I didn’t quite realise the seriousness of it, plus I had just been on holiday to Portugal to forget about everything, so I was still on
a high from that!
After the operation, I was woozy on morphine for a week.
I could just hear the scary bleep bleep of machines as I was on a high dependency ward. Ten days later, my new joint dislocated – there’s a
10% chance this can happen – and was slotted back into place. It was as painful as it sounds! I then had to wait motionless in bed for two weeks. I watched patients come and go, and I got so low that I didn’t want to see friends or family. I didn’t want to know that anything existed outside of the ward I was in. I was finally discharged six weeks, two more dislocations and another operation later on 23 October.
I threw myself back into life and wanted to see as many friends as I could. I started working with a physio and could see improvements every week, walking that little bit further each time. I continued to set myself goals, for example moving to using
only one crutch, then just a walking stick some
ofthetime.NowI rarely use my
stick, only when I am really tired or have been to the pub!
I try to keep active, I ride my
bike to my job at Great Ormond Street
HospitalwhereIworkasanonline editor. I love my job, and it was such a positive influence in my life during my recovery, as I gradually started working from home before I went back properly. Working meant I wasn’t just defined as a cancer patient, and it distracted me a lot. I never wanted to let my diagnosis define me. A few months ago, I even went hiking in Snowdonia. It was such an adrenaline rush; I would never have believed this was possible when I was lying in a hospital bed. I see only positivity in my future, and my next big goal is to complete a London to Paris cycle ride! I just want to keep on doing and ticking off my goals!
Andy Roast
“You read stories about people being devastated and
their lives turning upside-down, but honestly,
I was just glad to know what was wrong
with me.”
sarcoma.org.uk Connect • Sarcoma UK • Summer 20 16 15
Board of TrusteesDr Jane Barrett Karen Delin (Chair)ProfRobGrimerLeighHibberdineIanHughes
SharonReidHelenStradlingDr Jeff WhiteSam WhittamGlyn Wilmshurst
Disclaimer: Please note that personal views and opinions expressed are not necessarily endorsed by Sarcoma UK. The material in this publication is provided for personal, non-commercial, educational and informational purposes only and does not constitute a recommendation or endorsement with respect to any company, medical professional or product. Sarcoma UK makes no representations and specifically disclaims all warranties, expressed, implied or statutory, regarding the accuracy, timeliness, completeness, merchantability or fitness for any particular purpose of any material contained in this or attached document/s. The information contained in Connect is not intended to replace advice or medical care from your doctor. Nopartofthispublicationmaybereproducedinanyway without prior permission from Sarcoma UK.
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When Andy found out he needed surgery, he decided to document what his legs looked before, during and after. This is his journey…
You can read more on Andy’s blog at: ihavechondrosarcoma.blogspot.co.uk
Sarcoma stories
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