Allison and Beth Semikin, from Banstead, Surrey, are sharing their story with CLIC Sargent, the UK’s leading cancer charity for children and young people, to raise awareness of the emotional and mental health impact diagnosis and treatment can bring.
Allison’s daughter Beth, 23, was diagnosed with epithelioid sarcoma - one of the rarest forms of sarcoma - in June 2015 at 21-years-old.
Around six months prior to diagnosis, Beth began experiencing pain in her back which didn’t go away. Initial scans missed a tumour between her spine and pelvis, and it was only after referrals to orthopaedics and a neurologist that she was sent for another scan, which then picked it up.
Beth was first treated by having the tumour removed with a surgical sucker. It was only later when Beth was in Jacksonville, Florida to start proton beam therapy that a routine scan discovered the tumour had grown back double the size as she had received the wrong surgery initially.
The family were told that the tumour may not be operable, meaning Beth would have only a 25% chance of survival.
Fortunately, a few days later the family received the news that doctors could operate and Beth came back to the UK for an 11-hour spinal surgery.
Following the operation, Beth and her mum Allison flew back to Jacksonville for radiotherapy and proton beam therapy. Beth then had chemotherapy, and in a few short years she has had six operations due to numerous complications.
Allison said: “Beth’s problems definitely haven’t ended now that she’s in remission, recovery has been very difficult. Her multiple surgeries and tests have left her with nerve damage and she needs to self-catheterise.
“She also has incontinence, mobility issues and pain every day. Beth hasn’t had an opiate free day since September 2015.”
Research by CLIC Sargent, released as part of September’s Childhood Cancer Awareness Month, has found that more than half of parents (63%) said they experienced depression during their child’s treatment, more than a third (37%) experienced panic attacks, 84% experienced loneliness. Worryingly, less than 40% of parents accessed support for managing stress and anxiety during their child’s treatment.
Allison said: “Once the treatment for cancer is done it’s not the end, everything is ongoing. It’s a difficult time for parents unless you have some solid friends around you. People are in shock and they don’t know what to say. It’s horrible that people start closing off from you.
“When your child is going through cancer it’s an incredibly lonely experience, so isolating. You get forgotten. There were times that I was scared that Beth would die and I found it hard to open up and tell anyone about how I was feeling.
“Sometimes it would feel like the walls just came crashing in on me.
"I’ve had a few panic attacks and got close to the point where I asked for support, but then I felt like I’d got over that hurdle.
“I’m not the same person that I was before. Your priorities completely change and it’s like you end up with a different mind-set. Families definitely need more support and encouragement to talk openly about how they’re feeling.”
During this difficult time the family were supported by a CLIC Sargent Social Worker and the family are keen to raise awareness by sharing their story in a bid to help others.
“Our CLIC Sargent Social Worker Kate is a hero; she was an absolute life saver. She helped us so much with making sure we could access all of the financial support that was available.
“She advised us how to fill out different forms to make sure we had the best chance of getting the support because the benefit system can be so difficult.
“Kate also helped Beth to get a couple of CLIC Sargent grants. Beth had two jobs at university and when she got unwell she had to give them up. She found it really hard to lose that independence and not having her own money for basic things.
“CLIC Sargent made this whole experience more bearable and I don’t know what we would’ve done without the support.”
The family also stayed in CLIC Sargent’s Home from Home, Paul’s House, which provides free accommodation for families whose children are undergoing cancer treatment at nearby hospitals UCLH and Great Ormond Street Hospital.
Kate Lee, Chief Executive of CLIC Sargent, said: "Parents like Allison have shared painfully honest accounts with us highlighting the hidden costs of cancer – whether it’s the panic they feel every time their child has a high temperature, the emotional strain of staying strong for your family or fearing relapse at any time.
"To be told your child has cancer is devastating news but these findings show just how stark the reality can be for parents. It is vitally important that these families can talk about what they are going through and get the support they need. At CLIC Sargent, we know cancer’s impact stretches far beyond the shock of diagnosis and can last long after treatment finishes, this is why we strive to support the whole family, not just the person with cancer”
For more information visit our Childhood Cancer Awareness Month page.