Elaine Hold: my story

My diagnosis

“Aged 49, in 2016, I was diagnosed with acute lymphoblastic leukaemia (ALL). I had a bad lung and assumed I had a severe chest infection which wouldn’t go away. I had had lots of various infections that year, and just thought it was another one. My husband had noticed a lot of bruising on my arms and legs and insisted I tell the GP, which after a few weeks I did.  

My doctor insisted I had bloods taken but that took a lot of persuading as I hate needles. He took my bloods on Monday and the Freeman Hospital called me on Tuesday to come into hospital with an overnight bag and another adult. I was diagnosed with ALL and my treatment started that very day. ”

Treatment

“Since 2016 I have relapsed three further times and have lived with cancer for eight years now. I have had numerous different treatments. The first was intensive chemotherapy that lasted from 2016 to 2019; the second a bone marrow transplant in 2020; the third a new T-cell treatment in 2023 and now in 2024 my treatment is being considered as my options are now somewhat limited. Initially I was fine with my diagnosis. I accepted it and all that went with it. However, as the years have gone on both myself and my family have found it more painful and difficult to deal with mentally.

It’s been a rollercoaster ride during these eight years of living with cancer. I have had many ups and downs, luckily, I would say more ups but maybe that’s because I am an extremely positive person. The hardest thing each time was having to tell my family. It was like chipping away a bit of their heart each time. What made it harder is that, other than my husband and sons, the rest of the family are scattered throughout the UK and overseas, so seeing people was very difficult.

My first treatment consisted of chemotherapy which was “brutal and relentless”, as described by one of my specialists and continued for three years. I kept my spirits high and sang or listened to music every morning. I was renowned for singing through most of my procedures. I feel it takes my mind to somewhere else whilst they do what needs to be done. I always tried to stay positive in that first year even though I went through a tremendous amount. I learnt from others, who were ahead of me in treatment, how to cope with different situations and I appreciated the chats we had on ward together or in the waiting area of the clinic. I have since passed on little hints and tips I was given. 

This terrible disease affected my whole family. My teenage sons and husband managed to look after me and keep the house going which I am forever grateful for. They had to cope with so much, particularly as I had been diagnosed only two years after my mother-in-law had died after a 10-year battle with cancer. How much more did they need to endure? My youngest son even dropped out of university to be at home and my eldest had begun to struggle at university, which he never had before. Glad to say they really did well eventually.”

Living with leukaemia

“Throughout all of this my husband held the family together, he was and is our family’s key stone – my rock! He never crumbled even when going through a redundancy in the middle of everything. Always going above and beyond with his care and attention. We could not have done this without him! 

I did have some very dark days too. In 2018 I was extremely depressed as the intensive treatment had left me in a wheelchair due to the effect that it had had on my body. I also had to retire from my job that I loved, and that was heartbreaking. I experienced a few depressive months, spent mainly in my bed, believing myself to be a waste of space and burden on my family. I didn’t know what to do with myself nor could I manage to do many of things that I had been able to do and enjoyed. My joy was gone!  

It was only by reaching out to my specialist nurse that I began to long road to finding me again, a new me. I started to play my music every morning again and even tried to move a little in the bed to the time of the music. My specialist nurse arranged some physio for me once a week and I attended a daycare unit. There, I was able to have a range of therapies, mindfulness being one and this helped me very slowly gain some sense of routine and a life again. Having a routine and having a purpose for me helped me find the way forward to a positive place.

Over the years I have spent a lot of time trying workshops, craft groups, choir, walking groups for cancer patients to see which were the best fit for me. My joy, I found, was in practical things and in helping others. I had been a woodwork and engineering teacher and then worked for a charity. I had always found my energy was best when I was doing things with and around people and helping in some form or another. 

In between treatments I was able to go and visit lots of people and places in the UK, places that I would never have thought of going to. My husband, myself and our sons have all spent a lot of time together which we would not have done had my life been different. My situation has affected not just my immediate family, but my larger family too. My sister and her husband have taken early retirement because they know how precious time is. We see each other as much as we can and I FaceTime regularly with my parents who live in Ireland and speak with my father-in-law who lives in the USA.  

Being so ill for such a long time has had a physical effect on me as I have gained a lot of weight due to lack of mobility, my muscles are depleted, and my brain doesn’t work as well as it used to due to the toxicity with some treatments. It has, however, had a welcome positive impact and has made me reconsider what is precious in life and it certainly isn’t anything you can buy. Time with loved ones, family and friends, are the most important things to me. Now we plan our days around spending quality time together. 

I am not sure what the future holds for me or how much of a future I have but what I do know is that I will spend it in happiness, in love and joy because I do not want to waste one moment of this precious time I have been given.”