09 Nov 2023

Elaine’s ALL journey from shock to remission

Nothing was going to stop Elaine Bolton giving her daughter Rachel a wonderful sixth birthday. She had been battling mysterious tiredness and other symptoms for weeks, but doctors said nothing was wrong. So Elaine was determined to put her problems to one side for the little girl’s special day. 

“I had had headaches, vomiting, pain in my bones and under my ribcage, extreme fatigue, shortness of breath and a few other complaints,” said Elaine who lives in Davel, East Ayrshire and now works as an Early Years Support Assistant for East Ayrshire Council. “I went to my own GP three times and, when it was really bad, to the hospital twice. But I was told by all the different doctors it was just a virus, it would clear in a few weeks, and I needed to take antibiotics. But they didn’t help, I didn’t get better and most days I felt so bad I had to phone my then-husband at his work to come home as I couldn’t look after the children. 

“I was so shocked I couldn’t speak”

“I started seeing floaters in my eyes so I went to an optician. They said my eyes were fine so it was back to the GP surgery – where I saw a new doctor. She noticed on my notes I’d been to the surgery several times within a few weeks. I told her I was still having problems with being short of breath so she decided to do some blood tests, which no other doctor had done. She took the tests on the Thursday and told me to check back the following week for results. But on the Monday she phoned and asked me to come in to see her. When I got there she sat me down and told me she thought it might be leukaemia and I had to go to hospital immediately to get further tests done. I was so shocked I couldn’t speak, then started crying as I thought I was going to die. Knowing it was my daughter’s birthday I begged her to let me stay at home until the next day to see Rachel open her presents in the morning – as long as I went to hospital after that.” 

Elaine summoned all her strength to give Rachel a wonderful birthday. And then the next day went to Crosshouse hospital in Kilmarnock where she had a bone marrow biopsy, a lumber puncture and other tests, and was immediately given intravenous fluids, blood, plasma, potassium and magnesium. On Tuesday 20 April 2004, 35-year-old Elaine was told she had Ph+ acute lymphoblastic leukaemia (ALL). It was explained she needed to start chemotherapy straight away and that her only chance of survival would be a bone marrow transplant.  

“Shock is an understatement of how I felt at that point,” said Elaine. “I asked my nurse why I was feeling so bad and she said my body was shutting down. I asked what would have happened if the doctor hadn’t taken a blood test and I wasn’t in hospital and she said I would have died within two weeks. Wow.” 

Months of gruelling treatment

Elaine started chemotherapy the next day – it was the beginning of several months of gruelling treatment that shattered her physically and mentally. She endured daily sickness despite being given anti nausea tablets, and had to have further lumbar punctures and bone marrow biopsies once a week. After a month she was allowed home, but unfortunately after two days developed a blood clot in her leg from spending so many weeks in a hospital bed. She was given the blood thinner warfarin and compression stockings. But after starting the next round of chemotherapy it was found the warfarin was interfering with the treatment so Elaine was given painful blood thinning injections. 

“Steroids also bloated me and made me want to eat for Scotland,” said Elaine. “The weight gain upset me but the nurse said I would need it when I went for my transplant. 

“My third round of chemo was as a day patient for four weeks. It was great to see the kids, kiss them before school and just be in my own home. Normality helped in a big way. I’m a huge reader and took books with me to hospital but found I had no concentration. So my nephew gave me his portable CD player (this was 19 years ago remember!) and I had lots of my favourite music to listen to which helped me relax.” 

Finding the perfect donor match

After four rounds of chemotherapy, and a bout of pneumonia, Elaine went to Glasgow Royal Infirmary for her stem cell transplant. The medics had discovered her elder brother Drew was a perfect donor match. 

“I started with three doses of radiation to my brain, then four days of total body irradiation, twice a day,” said Elaine. “This was pretty easy as all I had to do with lie on the bed for 20 minutes. Then I had intense chemo for 24 hours, and on 19th August 2004 I had my transplant. It was just like having a bag of donated blood. Everything was fine until the next day when I started getting mucositis which was an inflammation of mucous membranes and left me unable to eat or speak and gave me heartburn. The pain was so bad I was put on morphine. I was kept in hospital for three weeks but on 13th September I was allowed to go home.   

“It was strange to be home and scary as well as the nurses around me were my security – now I had to do this myself. I didn’t realise just how exhausted my body was. Even lifting clothes out the washing basket put me on my knees. I learnt that everything I did had to be done slowly with lots of rests in between, otherwise I would end up back in hospital. My consultant was always telling me this. I went for short walks up and down my street, holding onto my husband as I had practically no strength in my legs after lying in hospital beds for so long. 

Struggling with lack of taste

“My biggest obstacle to getting my strength back was my lack of taste. Nothing tasted good, it was almost like cardboard, and I struggled to eat. Even drinking was hard as I was only allowed to drink cooled, boiled water and it was yuk. I was up and down to Glasgow Royal Infirmary three times a week, and they saw I was losing weight quickly and was very dehydrated. I was down to seven stone. They gave me high calorific drinks to take but they were disgusting as well and I usually put them down the sink. Finally I was told that if I kept losing weight they were going to re-admit me and tube feed me till I was back to a reasonable weight. That gave me a shock as the last thing I wanted was to be away from my children again, so I tried to eat little and often, still tasting of nothing, but it was enough, eventually, to satisfy my consultants. 

“I was also put on a chemotherapy drug called Glivec for six months which made me so sick. I had to wait till I was practically lying in my bed before I took it and tried to get to sleep immediately so that I didn’t bring it back up. I cried every night as I hate being sick. In the end I just accepted that I was going to be sick every time, but I was so glad when I stopped taking it.” 

Regaining her strength

In December 2004 Elaine was told she was in remission, and on 22nd December 2009 was told that her cancer had completely gone. Slowly Elaine regained her strength. She went back to her job four years after her leukaemia, and is now works full time as a Support Assistant in a local nursery. 

“I have a yearly phone call with my consultant just for them to keep up to date with how I am feeling and if I’ve had any problems over the last year,” said Elaine. “A week before my call I have a lot of blood taken, 17 vials if I remember, just to basically check everything is still working as it should, liver, kidneys, glucose, heart etc and that my blood is still all being generated by my donor cells. 

“For a while after I came home, every time I went to the doctor or hospital for a check-up, my kids would ask if I was coming home. It broke my heart that I had made them feel like this, obviously not of my choosing, but after a few years they realised I would always come home to them. 

“I still have health issues I deal with, due to my very aggressive treatment in the hospital, but they are nothing to being here to see my children grow up to be lovely, successful adults. Paul and Rachel were what kept me going all the time. I fought this disease for them and I told them while they were growing up never to say no to anything they want to do, never to have regrets. I have helped them do as much as I can, I’m behind them in everything they want to try and I’m proud they’ve become successful young adults now 25 and 26, living great lives.  

“I would say to anyone who is not feeling good and don’t seem to be getting better – ask your doctor for a blood test. It could have saved me weeks of feeling bad and maybe made my treatment a bit easier.” 

Want to read more about others who have been diagnosed with leukaemia? Read Gareth’s story about his diagnosis.

Discover more personal stories like Elaine’s