My life changed in 48-hours…

27 January 2020

Lisa Jackson, 50 from Barnes was diagnosed with acute myeloid leukaemia in 2016. Luckily for Lisa, her sister was a perfect match for her and donated her blood stem cells and saved her life. Here is Lisa’s story.

I was first diagnosed on 1st June 2016 with acute myeloid leukaemia and up until that point, I had enjoyed good health and had given birth to three very healthy children too. The previous 18 months had been fairly tumultuous for me but things were starting to get good again. I had just met my partner Simon in the March, we were very happy together and things were going in the right direction.

A sudden pain

One weekend, Simon and I had spent some time at his parents’ house and on the Sunday. I woke up feeling absolutely fine but later, I had gone to get something out of the wardrobe and had an almighty pain in my chest when I breathed. It continued to get worse all day so I called NHS Direct just make sure that I wasn’t having a heart attack, they suggested that I had pulled a muscle. By the following day, things weren’t getting any better and I spent that day lying on my sofa feeling horrendous and just vomiting.

By Tuesday, I could barely stand but took myself the short distance to my GPs surgery. There was a locum doctor on duty and as soon as she saw me, she said that I should get myself to the hospital immediately and she called ahead to make the necessary arrangements. I will always maintain that this doctor saved my life. She knew something was seriously wrong without even examining me and instead of giving me antibiotics, or saying that I had a virus – she took immediate action.

I had left my house with only my keys, mobile and purse and I wouldn’t return home for another six long gruelling weeks. I was taken to the Chelsea & Westminster Hospital and was put into the ICU. I was hooked up to all kinds of machinery feeling so ill but also so worried about my daughters; who would collect them from school and cook their dinner?! Then the haematologist came in. He said that my white blood cells were causing a great deal of ‘excitement’ in the lab.

He said that as they didn’t have the equipment and that my blood sample would be sent to Hammersmith Hospital. He said that it could be one of many things; a virus or glandular fever with the worst case scenario being leukaemia. Well, I knew I didn’t have that. I’d been fit and well just two days before. The results would come through within 24 hours and by midday the following day, he returned. My world stopped. This time he was accompanied by a nurse and asked Simon to sit down. He said he was very sorry but it was the worst case scenario. I had leukaemia. I shouted “I can’t – what about my babies?”

“I felt my whole reality had been suspended”

We were told an ambulance was waiting downstairs to take me to Hammersmith Hospital. I remember being in the back of the ambulance and the paramedics were chatting amongst themselves and I could hear strains of Pink’s song, “What doesn’t kill you makes you stronger”. I felt my whole reality had been suspended, I just felt so numb; I couldn’t believe what was happening to me but then, I just remember coming to and thinking, let battle commence!!

I will face this head on and give it my all. We got to Hammersmith and I was wheeled into the room that would be my home for the next six weeks. The consultant was already there, he said that it was going to be tough journey ahead but all I had to do was put my trust in them and everything was going to be OK. He also added that I shouldn’t google anything and I never did. With that, he left the room.

Later that day, I had a bone marrow biopsy which was extremely painful. The results revealed that the leukaemia was so aggressive that chemo had to start that very day. Despite this devastating news and with each test bringing even more bad news, I always knew that I wasn’t going to die. Simon swung into action and shared this news with my friends and family. He was calling friends of mine that he had never spoken to before nor did they even know of his existence!

Friends

I have an incredible network of friends and they just swung into action, they looked after everything. First and foremost, I needed a live-in nanny who could care for my daughters. They handled the initial interviews and I just saw the one they shortlisted. This is when Chelsea, our Australian Angel , came into our lives. I interviewed her from my sick bed and she was an immediate hit with all of us. She gave my girls stability during this terrible time.

My friends also went into my house and brought over my things to the hospital room which helped it feel like my space. A WhatsApp group was set up and friends would book slots to see me and then share with other friends what had happened that day.

I still haven’t yet been able to read all their messages three years on but I will one day. I know this helped my mum enormously as she saw just how much love and care my friends had for me. It was a great comfort to her. All the while, Simon was by my side. We’d only known each other for a few months and here he was, sleeping night after night in this ugly plastic hospital chair next to my bed.

After my friends and family had left for the day, we would spend every night just talking about everything and nothing. It was very comforting to have him there – the nights were the worst – but it was one hell of a way to really get to know your partner…over a hospital bed!

Treatment

The chemo was obviously a horrible time for me and the awful effects it has on your body together with the shattering tiredness. Despite all this, it was important for me to still get up every morning, wash and get dressed. Over time, I was able to progress from hospital gown to my pyjamas to jogging bottoms and in a situation like that, any progress was monumental. I was told that I would need a transplant and my family was tested first.

Thank goodness I didn’t have to go through the frantic searches that some patients have to go through, my sister was a 100% match for me. I was very lucky and this news brought tremendous joy to my family but especially to my parents.

Transplant

At the beginning of August, I was allowed home and was told the stem cell transplant would take place in September. I was told to go away and eat and then eat some more to make myself stronger. Simon and I planned to go to Barcelona for a break so we had picked the best culinary places to go to. We had a wonderful time together there. At the beginning of September, I went back into hospital and the transplant was scheduled for the middle of the month.

Before that, I was having radiotherapy twice a day in addition to chemo as well. My sister was my donor and on the day when her blood stem cells were going to be extracted, I was so utterly excited, I was bouncing around all over the place. After the procedure, I went to see my sister, the patient. It was a bit of a novelty that I wasn’t the patient for once! The doctors said that my sister had been a brilliant donor in terms of quality and quantity of stem cells, I was over the moon.

Transplant day arrives…

I remember the day of the transplant so clearly, 16 September, 2016. There were two nurses in the room with me and I watched the stem cells slowly going into me. It was a marvellous feeling. Afterwards, obviously there was some medical issues but slowly but surely, I started to get stronger and it was time to leave the hospital.

However, I was panicked about leaving there. Despite not ever wishing to be there in the first place, it was a safe place and if anything went wrong, help or drugs were just a press of a button away. Now, I would be at home by myself and I felt scared. I was still going back to hospital twice a week for check-ups and had to report any changes in my health immediately. My fear eventually lessened and I spent the run up to Christmas just sleeping and building up my strength.

“Christmas was an odd experience that year…”

Christmas was an odd experience that year. I wasn’t feeling brilliant but my daughters deserved to have a very special Christmas after the year that they’d had and New Year’s Eve, was rather poignant too. In some ways, I couldn’t quite believe that it had all happened. The only small consolation in all of this was that I was a size 8 the first time in my life! Obviously, I was delighted but as my friends always say, “Lisa, you always see the glass half full!”

Survivor’s guilt

My health is good now but I never take it for granted anymore. I remember talking to a friend about how upset I was getting when I heard about a friend’s wife dying and it happened again with someone else I knew. She said that I had survivor’s guilt, and she was right, it made perfect sense. I had a choice, either I cried every time I heard about someone dying of cancer, or I could channel it into doing something constructive. I choose the latter.

Now I go into schools, colleges or places of work, really anywhere where there is a group of people I can talk to about swabbing and joining the registry. So far, I think I’ve signed up about around 300 people.

Even though I was extremely lucky to have my sister as my donor, this isn’t always the case. With 30,000 people diagnosed with blood cancer each year, 2,000 of these will be frantically searching to find their matching donor who will be a stranger. I hope that by doing what I’m doing that when a person is told they have blood cancer, there is a donor for them ready and waiting. I was given a second chance at life and my dream would be that everybody can have the same.

How you can help

If you’d like to register as a potential blood stem cell donor you can check your eligibility and request a home swab kit today.

Anyone aged between 17-55 and in general good health can go on standby as a potential lifesaver.

If you're not eligible or you're already registered, why not check the other ways to get involved in the fight against blood cancer or help us cover donor registration costs?