24 Nov 2025

Giving back and having a purpose is so important to me

Caroline before her diagnosis

Leukaemia symptoms can be confusing and easily mistaken for other conditions,, particularly for women in mid-life when fatigue and bleeding can mimic common signs of perimenopause and menopause. This was the case for Caroline Sweeney, who fortunately sought help from her GP surgery and was immediately booked in for the all-important blood test.

In May 2022, Caroline suddenly noticed she was tired and struggled to walk uphill. In her early 50s at the time, she questioned whether the menopause was the cause.

“I’d been working as a self-employed registered childminder for 15 years and despite being around children every day had not one day sick,” said Caroline, now aged 54, who lives in Balloch near Glasgow. “I would routinely do 25,000 steps a day in my job and thought at my age I was bound to be tired. But it seemed to get worse and then I got some sores in my mouth. The dentist gave me an antibacterial mouth spray and I didn’t think anything more of it.

“I take the mini pill so wasn’t sure if my periods had stopped but decided I must be in menopause and booked an appointment with the nurse at my GP surgery. She was very nice and thorough. She printed off menopause information, took my weight and blood pressure and then did a blood test. She picked up that I had a heart murmur and I thought it must be genetic. I was told later it was a sign of leukaemia as my cells weren’t getting oxygen round my body quickly enough.

“Just seven hours later she rang me and told me I needed to go straight to the Vale of Leven Hospital in Alexandria for a blood transfusion. I was actually waiting for my grandchildren to be dropped off and asked if I could go the next day and she said no, you need to get there right now.”

Caroline was kept in hospital for a couple of days, given transfusions and then allowed home while more tests were done on her blood.

“I stayed in my bedroom away from my daughter and her boyfriend as I’d been told my immunity was very low. A couple of days later I went back into hospital and they tried to do a bone marrow biopsy but couldn’t because the covering on my hip was a bit too thick! But they had enough information to confirm the diagnosis.”

On Wednesday 18th May 2022 Caroline was told she had acute myeloid leukaemia (AML).

Caroline during treatment

“I was so sad for my two grown up daughters Jodie and Jessica and my partner Michael more than for myself as they are my world. I was in shock as I’m always so fit and well. I said to the doctors ‘don’t overload me with information, it will just stress me out, just tell me what I need to know and what I need to do’. They kept to this all the way through, and it really did help me.”

Caroline went home again for a couple of days before the start of her treatment, which gave her time to break the news to her family.

“I wanted to tell them myself rather than have them in the hospital with me. I raised them as a single parent and I’m very independent.

“I was then admitted to Glasgow Beatson Hospital the following week for chemo to start. The nurse that runs that ward was an old school friend so that softened the shock of my admission.

“I had six rounds of chemo in total and was in hospital with a couple weeks at home between each round between May and December. The first round didn’t work and they told me I’d need a stem cell transplant. Luckily they said I had plenty of matches available to me.

“The chemo wasn’t too bad, I tolerated it OK. I had a terrible skin rash which meant I couldn’t sit down, but they got on top of that. I lost all my hair as well. My daughter cut it before I started chemo, and I had a wig fitted. I did have sepsis and E.coli during my time in hospital but I got through it.

“The staff from the ward were absolute angels in nurses’ clothing. Michael lives in Edinburgh and couldn’t visit often as it was just after covid and I was only allowed two visitors. My daughters looked after me when I was at home but I wasn’t allowed to see my grandchildren. It was hard but thank goodness for iPads which meant I could talk to them all!”

In December Caroline began preparing for her stem cell transplant by isolating at home.

“I had my Christmas dinner delivered to me by family at the door – a drive-by dinner! I went back into hospital on 11th January, had the big dose of chemo beforehand which was quite dire, and then my transplant on 18th. It was from an anonymous donor, I think from outside the country. I have written to them thanking them and maybe one day they will get in touch. The donor team rang me and said the letter was so beautiful they wanted to use it as an example for other people.”

After three weeks in hospital, Caroline went home and began building her strength back up.

Caroline whilst her hair was growing back

“When you’re home and trying to do normal things, it hits you. I tried to make a Sunday roast but couldn’t even lift the meat out of the fridge. I couldn’t comprehend how weak and tired I was. I made sure I went for short walks and pottered around in the garden and slowly things started to get better. I’m left with some neuropathy though – my fingers and toes are really sensitive to heat and cold. I’ve had to get a big American freezer so I can see what’s in it and quickly grab it, and a dishwasher as even warm water feels like it’s burning.”

Caroline returned to hospital every three months for tests and bone marrow biopsies but in April 2025 was finally signed off.

“I’ve been able to relax since then. I couldn’t properly before.

“I couldn’t have done it without Michael, my daughters, and friends and childminding friends who were always there to help. They were all so supportive and kind.

“Having leukaemia not only took my health it took my livelihood as a self-employed childminder. I was told in the early days that if a child sneezed near me I could get an infection and die. So I went from my work to my doctor’s appointment, to the hospital and then being unemployed in 48 hours which was very hard. But now I do two days a week volunteering at the community food share doing admin and answering enquiries. There’s a lot of need out there. Giving back and having a purpose is so important to me and keeping busy is my coping mechanism.

Caroline now

“I feel I’m so lucky. Several people on my ward died including one young woman whose mother I still see for a cup of tea occasionally. I think why me, why am I so lucky? There’s no answer to that but it just makes me determined to give back in every way.

“I raise money for the ward and go back every Christmas with a big hamper for the nurses. I was nominated for Provost’s Civic Award from West Dunbartonshire Council for my fundraising. Someone put me forward and said that when I was in hospital I had time for everyone and supported them all with empathy and jokes. That’s me in everyday life I suppose. I accept things as they are and try to make the best of it. But I want those nurses to know how incredible they are. They come in smiling every day, work long hours and have to do such difficult things. I will never be able to give back what they gave me, but I can at least raise the money to pay for them to have some champagne and chocolates at Christmas.”

Caroline and her friend delivering hampers at Christmas