Eilidh’s story: Mental health struggles after treatment

“After finishing treatment for cancer, people presume it is over, but mentally it is not, you are left damaged. All my friends were so glad I was ‘cured’ but I was still fighting”

Two years after finishing treatment for cancer for the second time, 20-year-old Eilidh finally feels like she is beginning to make progress with the mental battle that she has been fighting since she was first diagnosed at just 14.

In April 2016, the schoolgirl spent weeks going backwards and forwards to her GP after she started suffering with extreme pain in her lung.

Despite being given an inhaler for suspected asthma, Eilidh developed leg pain thought to be developing teenage growing pains that soon became so severe she began struggling to walk.

Multiple trips to A & E led to a diagnosis of growing pains.

“I tried to get on with my daily life, thinking that my only worries were having asthma and growing pains,” Eilidh said.

The pain never eased, each day I seemed to be getting worse and worse to the point where the pain consumed me. At the end of May, I was taken back to our local A&E, and this time they transferred us to the children’s department at Crosshouse Hospital, Kilmarnock.”

On arrival, Eilidh’s mother explained to doctors that she had never had blood tests taken in all the time she had been in pain.

When her results came back, Eilidh was taken by ambulance to Glasgow’s Royal Hospital for Children and her mum was told that she had Acute lymphoblastic leukaemia.
Eilidh said: “I do not remember much about being told about my diagnosis, but I remember the moment I understood that I was extremely unwell and I was going to have to fight. And so, my cancer journey began.”

Eilidh suffered a bad reaction to the intensive chemotherapy she was given.

She said: “I was really sensitive to it, resulting in me being transferred to intensive care.

“The chemotherapy burst my gut and I was put into an induced coma for two months. The doctors had to go back at least 25 years through medical records to find someone who had reacted like me.”

Whilst intubated and in the coma, Eilidh underwent lifesaving surgery to repair her stomach which resulted in her needing a stoma bag.

“When I was finally brought out of my induced coma, I woke up thinking it had been just one night’s sleep but I couldn’t have been more wrong,” she said.

“All I could do was blink; I’ve had to work to learn everything again. Currently I am in a wheelchair as I am still relearning to walk.

“I have worked extremely hard and three years ago, in December, I walked for the first time unaided. Slowly I am getting my strength back. In some sense the chemotherapy to cure me put my life more at risk than the actual cancer.”

Eilidh left the intensive care unit and was moved back to the ward a few days before her 15th birthday. Her focus from that point onwards was beating the cancer, getting home and back on her feet.

Having spent just under a year in hospital, Eilidh said that spending time with other teenagers who were going through similar experiences made the days go much faster.

In August 2017, Eilidh had an operation to reverse her stoma bag but there were complications that meant she was left with a fistula bag.

Whilst coming to terms with the changes to her body and still undergoing treatment, in February 2019, at the age of 17, Eilidh was diagnosed with thyroid cancer on top of her leukaemia.

“It was such a shock knowing I had not one but two totally different forms of cancer at such a young age,” she said.

“I took my last chemo pills, signalling the end of my treatment for my Acute Lymphoblastic Leukaemia on 4th July 2019, now I was beginning the process of tackling my second cancer.

“I was admitted to the Queen Elizabeth University Hospital, Glasgow where I had both my thyroid cancer tumour and my thyroid removed. I was only in hospital for three days – which is the only thing that has gone smoothly during this whole journey of mine.”

On 30th July 2019 Eilidh rang the bell to signal the end of her treatment for both cancers.

“I invited family, friends, and hospital staff to come and celebrate this momentous occasion with me – by the time everyone arrived the ward was half full,” she said.

“ It was definitely one of the best days I have experienced in my entire life… something I will never forget.”

During her treatment Eilidh’s family stayed at Marion’s House in Glasgow for around three months.

“Whilst in intensive care, my Mum could not stay overnight on the ward with me and that is where Young Lives vs Cancer stepped in and helped us out,” she said.

“They provided my family with a room close to the Royal Hospital for Children where I was being treated, so that mum could be back with me early every morning. My Dad and sister could stay also as it was a family room, designed to keep families together.

“We cannot thank Young Lives vs Cancer enough for providing the room. I absolutely hated being without my Mum at night and having her back first thing in the morning definitely put me at ease. Having somewhere my Dad and sister could stay also meant I got to spend as much time with them as I could. This meant the world to me as I missed them so much!

“They supported my family when we needed it most and for that we will always be grateful!”

Now in remission for two-and-a-half years, Eilidh is in the process of having her fistula bag reversed.

She said: “We only have one shot at getting my reversal correct due to all the complications I have experienced, but my specialist surgeon is extremely confident in the steps we are taking in preparation for my first surgery. It is a little scary and I have had some wobbles but I know that my fistula bag needs to go to help me start living my life in the way I want to.”

She also recently made the decision to start therapy to work through everything that has happened since her initial diagnosis.

“Everything became too overwhelming for me, what I had been through and also the mental trauma I was still experiencing,” Eilidh said.

“Getting to meet other teenagers is one of the most amazing things. Having other people who understood exactly what I had been through, made me feel ‘normal’ in some sense. A lot of the close friends that I made have passed away, and this impacted me greatly and I feel I will never truly get over not having them here.

“This resulted in me suffering with survivor’s guilt questioning, “why am I still here when they are not?”

“I try to live each day to the fullest to make all my angels proud. I am also suffering with PTSD regarding my cancer journey. After finishing treatment for cancer, people presume it is over, but mentally it is not, you are left damaged. All my friends were so glad I was ‘cured’ and it was over but I was still fighting and did not really have the right support around me to help. It has been two years now and I decided the time was right for me to seek professional help and it has been a life-changer.”

Eilidh is now a qualified early years practitioner specialising in working with children who have additional support needs in an educational setting.

She said: “During my time in hospital, I grew to love working and playing with the kids and I decided that this was what I wanted to do. I knew it was my dream job and what I was made for. Being a teacher and a role model to children who are a little bit different and helping them realise they can do anything is a special moment. Being there to witness so many children’s ‘firsts’ makes everything I do so worth it!

“As well as working, I decided to build my Instagram page where I open up, sharing my story and speaking about topics which are close to my heart – raising awareness on misdiagnosis of blood cancers, sharing my cancer journey, living with a wheelchair, and relearning to walk, embracing my fistula bag, seeking therapy and also sharing my everyday life.

“I am extremely passionate about my story and everything that surrounds it. I have been given the most wonderful opportunities. Becoming ambassadors with charities and having my face on the front covers of newspapers. All my unique life.”

Author: Alison

Posted on Tuesday 1 March 2022

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