28 Jun 2024

Adapting to life with AML: Jackie’s story

Jackie Amor was loving life in her French farmhouse at Charente between Bordeaux and Bergerac in 2013. She and her husband Arthur had both used the opportunity of redundancy to realise their dream and move to France 12 years earlier. Jackie got a management job setting up a call centre for a consultancy firm, which involved travelling all over France. Arthur focused on renovating their new home. But in November 2013 Jackie developed a cough, which was still with her after three weeks.

“Our doctor said I had a chest infection and gave me medication and a machine to help with my breathing, but as New Year came round, I still wasn’t completely better,” said Jackie, who now lives in near Fakenham in Norfolk. “I’d also been really tired and was sleeping a lot more than usual. They told me it was probably a viral infection. Then one night my gums started bleeding. I got an emergency appointment with my doctor the next day and she sent me for blood tests at the local training hospital in Poitiers, two hours away.  

Jackie (right) with her twin sister

“I think she knew what was happening at that point as I now know it’s the hospital that deals with blood cancers. But at the time I just went there thinking I had a bad infection. The emergency doctor did a bone marrow biopsy and I had scans. I was then told I would be staying in and was taken to the oncology ward. It was then I started getting worried.” 

The following morning, 14th February 2014, Jackie was told the devastating news that the tests had revealed she had acute myeloid leukaemia (AML). She was 59 years old.  

“I asked two questions: Would I lose my hair (almost certainly) and would I die (they said they didn’t know). I was scared and frightened of what would happen. Also, I was annoyed as I had recently had my hair coloured and highlighted! 

“I then had to tell my husband and he told his children and my two sisters. My twin sister worked for an oncologist in the Netherlands and had a list of questions for my consultant and I tried to put on a brave face. He said I had two genetic mutations – one bad and one not so bad. My sister told me not to look up anything on the internet.  

Jackie (left) at her twin sister’s wedding

“I started intravenous chemotherapy that night, then the following day I had my PICC line inserted for my chemotherapy to start. Everything was incredibly tightly controlled for hygiene. All nurses and doctors also had to change in a side room. There was a limit on people coming in and out, they gave you special pyjamas to wear and I wasn’t allowed books, just my laptop, which could be wiped down.” 

Jackie was put on a cycle of three rounds of chemotherapy. Each one lasted a week, then she stayed in hospital another month or so to protect her from infection. In between rounds, she was allowed home for a week.  

After the first session, Jackie had another bone marrow biopsy and was told she was more than 99% clear of leukaemia and that they could go ahead with further treatment, including a bone marrow transplant.  

“I celebrated my 59th birthday on 27th February 2014. I wasn’t allowed cards because of the infection risk and I had patchy hair. Fortunately, I could use social media to speak to friends and family. My hair had fallen out and my sister shaved my head. Looking in the mirror I just saw someone else – it wasn’t me. I also had the challenge of translating the French instructions and pamphlets ready for the bone marrow transplant. I went on Macmillan Cancer Support’s website and they sent me the English version. My doctor told me to get rid of my dogs (not possible!) and remove all carpets from my house in preparation for my going home after the transplant.”  

Although Jackie has a twin sister, who was the ‘spare card’ for a bone marrow transplant, she eventually received the cells from a 28-year-old German man who was a more perfect match. She received her transplant on 25th June 2014, her husband’s birthday.  

“Before the transplant when I was being given heavy doses of chemotherapy, I was put in a plastic tent to help prevent infections. That was difficult but I used a white board to count down the days and the doctors put my white blood cell count on it every day too. A week after the transplant I had ulcers everywhere, couldn’t eat and had infections. I remember being sedated for a day or two and came round not knowing anything and being very weak. The first day I couldn’t walk but the nurses insisted I went to the bathroom, and they washed me. That day I decided I would do it myself from then on. Even if it took all day.”

Jackie with her wig

Eventually on 1st August, her 22nd wedding anniversary, Jackie was well enough to go home.  

“My husband, his daughter and sister cleaned the house from top to bottom. The dogs weren’t allowed upstairs, and I didn’t touch them on the doctor’s order. I still had to wear a mask and avoid anyone with a cough or cold, and children. I rested and my blood levels eventually returned to normal, although my blood group had changed, and I was left with such high iron levels I had to have a regular blood draw every three months. I was determined to do something every day that was more positive than the day before, even if it was just to walk a bit further round the garden. I also remember craving dippy eggs as all the hospital food was overcooked to prevent infection!  

Jackie continued to see her oncologist regularly for tests. But after the shock of the diagnosis, she and her husband Arthur decided it was time to make plans return to the UK, feeling they wanted to be near their remaining family, as Jackie’s mum had passed away during her treatment. Jackie and Arthur eventually moved back in 2018, once her doctor felt her infection risk was low enough to make it safe to travel.  

“For several years after my diagnosis, it was difficult to speak about the future or indeed my experience. Before diagnosis we used to walk and cycle every day and I would do yoga twice a week. This year – ten years since my transplant – I returned to yoga, but the bikes are still hanging up. I walk every day but not as far as I used to. I like to think that this is age rather than illness that made me change! Over time I have been able to plan ahead. It was two years before I would even think about the future not knowing what it held.” 

Jackie, now 69, has annual blood tests and ECGs to check for any heart damage, plus an appointment every two years with the consultant, which is all that remains for the chapter of Jackie’s life which she spent being treated for leukaemia.  

“My hope for the future is that kinder treatments can be found. I have lost many friends to cancer so I know I’m lucky.” 

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