Sarcoma Awareness Week: Nicola and Louise

We have been working at the RNOH for almost 10 years.
It is a very difficult job but the rewards are endless! We have so much contact with our patients, we really get to know them and their families, helping them through good times and bad. The satisfaction that being there for them brings us in immeasurable – that’s why we are here day after day. Unfortunately with the nature of this cancer there can be recurrence, our patients are happy to see that we are here to comfort them and reassure them through their journey. 

Thanks to the work that charities like SCAT do we are now seeing more and more patients living much longer as treatment improves and so does prognosis. We are very honoured to work with fantastic patients and world class surgeons and we love fundraising for SCAT. 

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"It is a very difficult job but the rewards are endless!"
- Nicola and Louise

Sarcoma Awareness Week: John

The ‘No Right Leg’ Dairies

As a ‘right side through hip amputee’ there are many things I can no longer do but let’s not dwell on the negative as there are many things I can still do and in fact new experiences to challenge me.

Work is busy, building websites from home for a large American corporation. 

At 37, I contracted a life threatening soft tissue sarcoma in my right thigh – a 6.5kg tumour was removed. I must have annoyed someone or something quite important as a couple of years after my brush with cancer my right femur snapped and off we go again. I spent a year in and out of Hospital trying to get it to mend but to no avail so my only option was amputation.

I met a fantastic surgeon and a big shout out to Mr David Ward and his team at Kingston Hospital who first removed my right leg just below my hip in the attempt to give me a usable stump but due to infections they had no choice and after a long battle which lasted 26 weeks they removed my leg through hip (disarticulation). There are not many of us ‘through hips’ in the country and we all have long and drawn out tales of woe so at this point we can get onto the happier side of Amputation - living in Farnham in Surrey with my wonderful wife Megan (who probably deserves a medal for putting up with me) and my Bulldog Watson who is a constant source of fun.

I had problems with getting a prosthetic leg that was suitable for my condition from the NHS and eventually I was introduced to the charity SCAT who took time to listen to my plight and generously invested in my future by way of a shiny new Ottobok leg which has opened my life to new possibilities and experiences. 

This brings us almost up to date. I am now over 10 years clear, the axe has been lifted from my neck and I can carry on with my life without that particular cloud over me. I now not only work but am able to carry out many different things including teaching Kickboxing which has always been a passion of mine from a very early age. I now have a drive not only to make my life as full as possible but give something back as well to try and help other people with similar issues to me.
 

"I was introduced to the charity SCAT who took time to listen to my plight and generously invested in my future by way of a shiny new Ottobok leg which has opened my life to new possibilities and experiences."
- John

I arrange charity days for SCAT with my local Nuffield Gym in Farnham who have been incredibly supportive. I have also just completed a one million meters challenge on a Concept 2 rower which I completed in 6 months instead of the year that they allow you and I must admit I really need a break from rowing after averaging around 50km a week to complete the challenge in this time.

I have also started sailing at a local center and target shooting at Bisley Camp near Woking in Surrey, which are just a few things that I am involved with. Sometimes it seems that I do much more now than I did when I was able bodied.

What next? - There are a few World records I have my eye on so stay tuned as far as that is concerned and I will carry on finding new and interesting ways to raise money for SCAT along the way.

Sarcoma Awareness Week: Andrew

In 2007 my wife and I went to New Zealand for a years’ working trip. I got an Orthopaedic registrars job working with a sarcoma surgeon, after 6 months I moved jobs, and by chance started working with 2 other sarcoma surgeons, I was hooked.

Working as an Orthopaedic oncology surgeon is an extremely rewarding career. The surgery is varied, interesting, and can be very challenging. It also allows us to work closely with other specialties, without whom our jobs would be very difficult. However the most rewarding aspect of being a sarcoma surgeon is the people I deal with. 
 

"A huge Multidisciplinary team supports the surgeons. The wonderful specialist nursing staff and therapists, oncologists, Radiologists and pathologists, and of course the other surgeons within the unit."
- Andrew

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Foremost in all this are of course the patients we meet. I am constantly inspired by the way in which patients and their families deal with a life changing diagnosis and treatment pathway. Being involved with these inspirational people and endeavouring to improve those pathways are why most of us are drawn to this career.

Recently I had the privilege of treating a young girl with sarcoma in a major nerve. During her initial visit, through her radiotherapy, surgery and rehabilitation, she has remained a ray of sunshine at every meeting. She typifies the patients we have the privilege of treating.
 

Sarcoma Awareness Week: Milli Lipshaw

I have worked with children and teenagers that have been diagnosed with Sarcomas in a variety of settings; from the surgery ward, to the oncology ward and now in my role as a Paediatric and Adolescent Sarcoma Clinical Nurse Specialist at the Royal National Orthopaedic Hospital.

I find the main frustration for parents and patients is “what happens now?” 
Part of my job is to break this information down so it is understood by families. What? Why? When? and How? This helps to reduce some of the fears that they have. I find it very rewarding helping to make their cancer journey a little bit smoother.

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"I find it very rewarding helping to make their cancer journey a little bit smoother."
- Milli

As well as being there at the very start of the patients’ cancer journey and supporting families by answering any queries or concerns they have. I also do a lot of work in the background liaising with the patients’ oncology centres, community teams and organising scans and appointments.

It’s nice for patients to know a friendly face throughout their journey and I feel like I am in a very privileged position. 
 

Sarcoma Awareness Week: Kim's Story

I was only 13 when I was diagnosed with Ewing’s sarcoma.
I had been experiencing a pain in my calf area every time I would walk to school. On 27 April 2015 it was so bad that my calf had swollen and become very red. The school contacted my Mum and advised that I should be taken to A&E as they had 'never seen anything like it’.  At first we all thought it was a sports injury as I am a very sporty person, and it was put down to being a torn calf muscle but as I began to develop sweats over the next few days too an ultrasound was then carried out whereby it revealed a more serious issue. I had tumour in my calf muscle.

This was confirmed by an MRI on 13 May 2015 and I started chemo on 11 June 2015. Six rounds of chemo before surgery was the protocol, then surgery, then another twelve rounds of chemo. Those first six rounds caused discomfort, sickness and fear but one something I knew I had to endure as it was supposed to help me - I had to fight through it. Unfortunately, the chemo didn’t work on my tumour with only a 5% reduction in size. It was too big to be removed on its own. The only way to cure my cancer was the amputation of my right leg above the knee. This happened on 23 October 2015.

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"I now live a fearless, confident and fun life just as a teenager should!"
- Kim

I remember waking up from the surgery in so much pain… that day will always leave me traumatised as it’s the day my life changed in the way I thought was for the worst at first. Turns out life hasn’t been all bad! Along with the negatives came positives, positives that have made up for the negatives and shown me more to life than I once thought.

One of these positives was the huge help provided by SCAT - without them I wouldn’t have progressed as quickly as I have! They provided me with a kick-start grant which helped fund the microprocessor leg I needed to open up wider opportunities and give me a chance of living a reasonably normal life again. With the help of SCAT and Dorset Orthopeadic I received a Rheo XC in April 2017 and  I am incredibly grateful for this. I am walking freely and confidently, keeping myself active just like I used too and doing things a teenager does - having fun! I can honestly say this leg has changed my entire perspective and experience of life - without it I wouldn’t be doing anywhere near as many things I am doing now. For that I can’t thank SCAT enough for the help they’ve given me and it shows no matter what situation, there are always people to help and that’s something I highly appreciate in this world. I now live a fearless, confident and fun life just as a teenager should!

Sarcoma Awareness Week: The Chairman's Thoughts.

As Chairman of the Board of Trustees of SCAT I take considerable pride in what has been achieved by this small Royal National Orthopaedic Hospital based charity since its inception some 30 years ago.

It started as a “wig fund”to supply children and adolescents with fashionable wigs to hide the hair loss caused by potent chemotherapy, the NHS options been appalling at that time.

Funds at that time were very meagre but the the subsequent development of a professional fundraiser for the charity has radically altered our approach to fundraising relying not only on gifts from individuals  but also donations from charitable trusts and most importantly the development of fundraising events often initiated by patients, their families and friends.

More funding means that we can extend our areas of support each of which is targeted at differing areas of the patient pathway. We remained totally focused on patient welfare particularly during their inpatient stay but also following discharge. For many years we were the only charity providing modern sporting prostheses to young amputees as part of our “Live life to the full “ campaign. Thankfully this expensive area has now gained central NHS support.
The majority of our support has undoubtedly  been in the area of clinical research in musculoskeletal oncology. In total we have raised £2.5 million to improve the outcome of these devastating diseases.

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"It started as a “wig fund”to supply children and adolescents with fashionable wigs to hide the hair loss."
- Steve Cannon MBE

Many areas have  been selected for study ranging from the genome of malignant cells, specific markers in rare tumours, better fixation of internal prostheses and the eradication of infection to mention but a few.

Our work has without doubt improved the outcome and quality of life of these unfortunate young people but as always there is still much to be done.

Live Life to the Full

Here at SCAT we are immensely proud of our Live Life to the Full campaign, we have helped so many people over the past ten years and we want to continue to help many more – your support means that we can celebrate life changing achievements like these:

“I can walk the dog with my granddaughter” – Jean
“I can continue to be the athlete that I used to be” – Ed
“I have an improved quality of life” – Kelly
“My prosthesis gave me my life back” – Anna

Leave a legacy

Shiela Haddow explains that by leaving a gift in your Will you can continue your support for SCAT.

"It is difficult to condense years into a few sentences, but I would like to share the reason why SCAT is such a special charity.

"In the autumn of 2004 my husband, Leslie, was diagnosed with osteosarcoma behind his left knee.   We were referred to Prof. Tim Briggs. He operated on Leslie at the RNOH in Stanmore in the December of that year,  I shall never forget the kindness and support we both received from  Prof. Briggs and his wonderful secretary,  Janice. 

"This care and pioneering surgery gave us over 7 more happy years together. When Leslie died in April 2013, I decided that the most appropriate “thank you” would be to support SCAT bone cancer trust and the amazing work that it does.  

"This is truly a charity that 'makes a difference' and is why I have chosen SCAT as a beneficiary in my will."

For more information about how you could support SCAT please contact Sarah at scat@rnoh.nhs.uk