On 24^th June 2015, my 50^th birthday, our lives changed forever. After months of searching for the cause of my then 21 year old daughter Beth’s worsening leg pain we received a diagnosis of Epithelioid sarcoma, an extremely rare and aggressive form of cancer. She had a small tumour growing up her right sciatic nerve, in one of the bone cavities at the base of her spine.

It was a terrifying moment, one that no-one should ever have to experience, and as a mother my world caved in. My children are my world and to have one of those children diagnosed with a life threatening condition takes a part of you away. I fear that this part of me will never return because the fear that sarcoma has brought will now never go. Every ache, every pain, every facial expression of Beth’s I now read into, fearing the worse. This is something no parent should ever have to go through. Most of Beth’s problems have been due to ignorance, mistakes and misdiagnosis. This is why I am running
the London Marathon, to prevent anyone else having to suffer in the ways we have.

Sarcoma UK is a charity dedicated to preventing these mistakes occurring, through education and research. They are the only UK charity raising funds for all different types of sarcoma. Beth’s type of sarcoma is extremely rare; sarcomas account for 1% of all cancers and Epithelioid sarcoma makes up 1% of that 1%. Without Sarcoma UK there would be little to no research into this rare form of cancer. We need them.

Beth’s route to diagnosis was fraught with difficulties and
involved the tumour being missed on an MRI in February 2015, an unnecessary epidural and an incorrect 3 hour surgery to remove the tumour in June 2015, which served only to increase her chances of the sarcoma spreading to other parts of her body.  Throughout this struggle for diagnosis, her leg pain, originally thought to be sciatica, rapidly worsened and her condition deteriorated such that in June 2015 she was barely able to walk, was constantly on a high amount of painkillers and opiates, had lost a significant amount of  weight and was frequently having panic attacks due to a combination of these drugs, stress and pain. She had no life and has told us that she dreaded waking up each morning to yet another day of agony.

In June 2015 her tumour was found but wrongfully assumed to be benign, which led to an incorrect surgical method being used to remove it. It shows how desperate we were for answers that she felt relief upon being told she had a benign tumour, since she knew that within a few months, if her condition continued to deteriorate, she would be in a wheelchair and unable to lead an independent life. Although scary, this
diagnosis provided a cause for her pain, one which could be rectified.

However, it did not turn out to be this simple; biopsies showed
it was sarcoma. She was sent to Jacksonville, Florida for proton therapy, an alternative to conventional radiotherapy, in the hope that her fertility and bowel and bladder function would not be compromised. On her third day there, by which point her symptoms had returned, a planning MRI showed the tumour had regrown and was double the size it had been before. Despite being assured the previous surgery had achieved clear margins, the tumour had not been properly removed by the last surgeon as he had sucked it out in pieces. This had left behind microscopic cells leading to the regrowth and spread up her spinal cord.

This was an incredibly scary time for us. We were faced with the
possibility that the tumour may not be operable, which would leave Beth with a 25% chance of survival. Thankfully a few days later we discovered it was indeed operable, and she was brought back to the UK immediately. Three weeks later she had an eleven hour extensive spinal surgery at Stanmore Hospital. This surgery was exceptionally difficult and she is still trying to cope mentally and physically with the trauma of such major surgery and its repercussions, leading to a diagnosis of PTSD. Beth unavoidably suffered nerve damage during the surgery, resulting in her need to self catheterise, faecal incontinence, mobility issues and daily pain. Thanks to the amazing team at Stanmore, clear margins were achieved this time and over sixteen months on Beth is still sarcoma free.

Following this surgery Beth needed a course of radiotherapy and proton therapy. Radiotherapy was now necessary due to the extensive amount of metalwork inserted during surgery to stabilise her spine, and so to protect her ovaries from radiation damage an ovarian transposition took place in which her ovaries were moved out of the way of the radiation field. This was to prevent early menopause, as well as to protect her fertility. Sadly this now means Beth will need IVF if she wants to have children in the future.

In November 2015 Beth and I returned to Jacksonville, where she had a course of radiotherapy and proton therapy successfully.

On our return in February 2016 Beth required an egg harvest before her chemotherapy began, to ensure she had some healthy eggs in storage, undamaged by the chemo drugs.

On March 3^rd 2016 Beth began her chemotherapy, planned as a course of six cycles. Unfortunately each cycle was extremely difficult, requiring multiple hospital admissions, blood transfusions and a large amount of side effects.

Before her sixth cycle could take place, Beth became extremely unwell with a bowel obstruction. This led to a six week hospital stay, a blue light ambulance to London, a blood infection, multiple severe pain episodes almost requiring sedation and bowel surgery.

Her recovery from this surgery was riddled with complications, culminating in the formation of a deep pelvic abscess which proved extremely difficult to treat. Beth became extremely ill, and for me it was the most worrying time throughout this. She could barely move or stay awake, was in dreadful pain and her temperature was uncontrollably high. At times I was honestly unsure as to whether she would make it through. However, with the perseverance and dedication of her abdominal surgeon she recovered from this episode, to some extent.

Beth’s condition had improved but she was still not well. Her temperature continued to swing, bowel content and pus drained constantly from her back where the abscess had formed, she was blood transfusion dependent and she required weekly admissions to hospital.

In December 2016 Beth had her seventh surgery, aiming to fix her bowels to prevent further abscesses. She was finally discharged at 9pm on Christmas Eve and has stayed home since, the longest time we have spent at home in one go since chemotherapy began on March 3^rd 2016. Beth is healthier than she has been in a long time, although she currently remains on intravenous antibiotics with weekly blood tests. She will continue to require three monthly chest X-rays and pelvic MRIs for a number of years to check for any recurrence and/or spread.

This journey has been incredibly challenging for us all. For me the worst part is knowing that a lot of thiscould have been avoided. Had the original incorrect surgery not been performed it is highly unlikely Beth would have needed the extensive spinal surgery, thus avoiding incontinence, nerve damage and pain, the ovarian transposition and
therefore IVF, radiotherapy, bowel complications and the pelvic abscess.

Sadly, Beth’s story is not uncommon. Due to a lack of awareness of sarcoma on both the medical professionals' and general public's parts, sarcoma is often diagnosed late, which leads to it spreading and a poorer prognosis. Early detection is key and essential in giving people a chance to recover from sarcoma. This starts with greater awareness and better education of sarcoma. Better funding is needed to aid research into sarcoma and its effective treatments, as currently many treatments effective at killing ordinary cancer cells, including many forms of chemotherapy, do not affect sarcomas in the same way.

I am not running the marathon just for Beth and my family, but also for the many other people affected by sarcoma; for all the people, young and old, whom we have met during our journey, at proton and in support groups. Too many people are dying and we do not want to lose anyone else. Our friends are special to us and we all need your help.

To join in and raise much needed funds for an exceptionally worthy cause please donate whatever you can. For more information on sarcoma, please take a look at www.tumourhasit.co.uk/s-a-r-c-o-m-a/

An enormous thank you for taking the time to read my page; it
means more than you will ever know.

Thank you so much for your support! 

To find out more about Beth's journey please have a read of her blog at www.tumourhasit.co.uk .
Please like her on Facebook at www.facebook.com/tumourhasit and follow her at www.twitter.com/tumourhasit .

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