Lisa Jackson

For Lisa, her symptoms came on suddenly, but thanks to the quick-thinking of her GP, Lisa received her diagnosis of acute myeloid leukaemia (AML) before it was too late. Here, Lisa is sharing her Spot Leukaemia story.

28/5/16: felt absolutely fine.

29/5/16: felt absolutely terrible.

I couldn’t breathe without getting pain. I thought it was trapped wind! By midnight it was so bad my partner Simon called NHS direct. They sent a paramedic who was concerned I was having a heart attack. I wasn’t. He suggested I’d pulled a muscle… As I was feeling so utterly terrible, he suggested I went to see my GP on the Tuesday (the next day was a bank holiday).

30/5/16: I spent the next day vomiting (and slowly dying it turns out!).

31/5/16: I called my GP first thing. They did the usual offer of an appointment the following week. When I said the paramedic had been out, I was offered an appointment in 20 minutes.

It was a five-minute walk away. I hobbled there holding Simon’s shoulder with my phone and keys. Little did I know, I wouldn’t return home for a month!

It was a lovely young locum doctor. She said she wanted me to go straight to hospital and would call Chelsea and Westminster so I could bypass A&E and go straight to the ward.

Months later, she happened to be in the surgery again when I took my daughter in. It was very emotional as she saved my life. She said she knew something bad was going on. It was so great to be able to thank her.

C&W diagnosed pneumonia (easy – I could get over that!), but the haematologist then came in. My white blood cells “were causing a lot of excitement” in the lab. They didn’t have the right equipment, but my bloods would be sent to Hammersmith Hospital (a haematology specialist hospital) and the results would be back in 24 hours.

1/6/16: I survived the night, though I was really, really ill and they had to watch me closely in case I needed to be in the HDU.
Exactly 24 hours later, the haematologist returned. It went like this:

  1. He was with a nurse.
  2. He told Simon to sit down (I don’t remember this, but Simon does!).
  3. Diagnosis given.
  4. Me wailing, “But what about my babies?” (I have three daughters – 13, 11 and 8 at the time). Their father had walked out on us all the year before and Simon has only been in my life for seven weeks.

I was then informed there was an ambulance waiting to take me to Hammersmith Hospital immediately and they sent me on my way, wishing me luck. In the ambulance, the song ‘What doesn’t kill you makes you stronger’ played on the radio. I can remember looking at Simon and saying, “Let battle commence!”

My consultant was waiting in the room for me. He told me it was acute myeloid leukaemia (AML) and that he was positive in the prognosis. His one request was: “Don’t google ANYTHING.” I never did.

Prior to my diagnosis, I’d had a lump in my groin for a few months. The previous week, I found one in my boob. I was thinking that I must get it checked. Looking back, I had a couple of mahoosive bruises, but laughed them off.

It was the pneumonia which sped things on. My chest has always been my Achilles heel, so I’m grateful it reacted when it did.
I stayed in Hammersmith Hospital for about a month the first time. They did tests (my first biopsy was a particularly memorable moment!) on my arrival day and said chemo would start the next day. After the tests they said it was so aggressive it would need to start that day.

No one knew what was going on and so Simon had to make the calls to my friends and family (most of whom he’d never met!). My parents were away, and the decision was made not to tell them until their return the next week.

WhatsApp groups were set up with teams of wonderful friends being by my side at all times and bringing things to help. My sterile room turned into a cosier place to be. And my fridge was filled with far better alternatives to hospital food. I felt safe there, and Simon would stay most nights on a reclining plastic chair that was probably similar to one you’d find on a budget 1970s airline. If he couldn’t stay, friends or my mother would stay. With them and the wonderful staff, I was certainly ‘cared for’.

I arrived at hospital with my keys and phone and could have done with a small van to get all of the gifts that I was given to make my awful room a better place to be. I remember a nurse saying in the early days, people who make their rooms nice always leave quicker. I wasn’t allowed any real flowers, but had beautiful fake plants and flowers and room scents. The nurses always said how lovely it was to come into my room. That cheered me up a lot!

I had all the usual delightful chemotherapies. The head nurse, who became a good friend, always told me when to read the next chapter of the AML booklet they provided. I didn’t want to know what was coming, just put my complete trust in the consultants.
A stem cell transplant was then brought up. I have one sister. We are polar opposites. There was a 1:4 chance. There was NO chance she’d be a match. Two gruelling weeks waiting for results. Then she made the call to say she was a 100% match. Cue lots of tears!
A second chemo session and two weeks in hospital in the summer was much easier. Simon and I got permission from Gill, our nurse, to get a sneaky trip to Barcelona for a few days in the time between that stay and going in for transplant. She gave me the orders to “stay out of the sun and eat as much as you can as you’re going to lose a LOT of weight.” The Spanish food meant I could follow her orders and the wine helped out too!

6/9/16: I went in for the biggie. My line was inserted, and I was good to go. This proved a huge psychological help for me. No more jabbing needles into veins. Chemo and then worse chemo and intrathecal chemo (in my spine to protect my brain – particularly vomit-inducing) and then it was time for TBI. I always have to say Total Body Irradiation in an American accent. It sounds like a superpower. It was, but my goodness, it almost killed me first. A session twice a day. Each one equivalent to 400 X-rays. I was glowing after each. They took place in the basement, with the most interesting ‘mad professor’ in control. Wooden metre rules and a handmade Perspex coffin-like box were juxtaposed by the most modern, high tech machinery.

I had some tricky days after all this, but nothing they didn’t immediately sort for me, and oh the love I felt for anti-sickness drugs!

15/9/16: my sister came to the hospital to harvest her cells. I was bouncing with such excitement. My mum came too which was very emotional. To see one of her daughters doing this for her other daughter… I can’t imagine. It was the only day I didn’t need to be hooked up to a treatment of some sort, so I, for once, was the visitor and sat next to her bed (and intermittently hugging any nurse who came. I was VERY excited!). My mum noticed our machine was called ‘Hope’. The one by the next bed was called ‘Kevin’. I was quite happy.

I was beside myself with happiness that day. It was the one day throughout treatment that I had no procedures to endure. I came down from my ward and, for once, wasn’t ‘the patient’ and wasn’t connected to a beeping machine. I was bouncing around like I was drunk. Hugging anyone and everyone.

I saw my consultant on the stairs later that day. They had hoped for 2 million cells, 3 million would be absolutely great, and my sister gave me 5 million. He said I couldn’t have a better start.

16/9/16: Simon and I walked to the corner shop that morning to clear our heads. It was transplant day. I sat on a bench outside waiting and saw a penny on the floor. I picked it up and hoped for good luck. It’s still in Simon’s wallet.

The transplant was very calm. Usually the amazing, but ridiculously busy, nurses rushed in and out of the room, but that day two nurses had to be with me for three hours, watching it go in in case of reactions. It was so lovely to just sit and chat, hearing about their families and their lives.

Simon and I celebrated quietly that eve and then the steady stream of well-wishers returned. It gave me a purpose to the day. I’d set an alarm, have a shower and slowly get dressed. That’d take about two hours and then I’d always put some mascara and lippy on, ready for the day.

I always wore my own clothes (albeit trackies) and loved popping down to the laundry room every few days to do my washing. It was far from a normal life, but that little bit of purpose. My daughters would pop in after school. I’d desperately try to be as jolly and energetic as possible. Two would sit in the visitor room doing their homework, whilst I spent 1:1 time with the other. It was incredibly important to me and, I hope, my girls. Then they’d rotate and after their visit I’d be exhausted.

Six weeks later, I left the hospital. I was scared as I felt so safe there, with a buzzer to press and a tiny room that required little energy. Simon’s flat was very close to the hospital, so staying there was the perfect transition and a good place to recuperate until I returned to my girls two weeks later.

I’m now doing good! I had the chimerism tests to see what percentage of my cells were mine, and what were my sister’s. They want it to be 100% after the third month post-transplant. Mine was 100% after the first.

My consultant said I was a textbook example of AML. There was just as much chance of getting leukaemia as him. The worry is secondary cancers, but I try to keep everything checked. Being 46 with three children, going through the menopause was a godsend!

July 2017, due to being immunosuppressed, I got shingles in my top left quarter of my face. It infected the eye and I get sore flare ups if I don’t take daily acyclovir and a couple of drops. I can’t shift it, and it’s sped up the need for a cataract in that eye. I always knew they’d be likely after about five years.

That’s the only medication I’m on though, and has been for the first 18 months or so post-transplant.

I do think I’ve said a lot (I LOVE my story and could talk about it for ever!), but one big thing post-treatment was ‘survivor’s guilt’. I didn’t realise I had it until my hairdresser gave a title to how awful I felt every time I heard about someone who died way too young.

I turned this around and did a lot of fundraising for Hammersmith. Simon is in TV and made a film for them that they desperately wanted, but didn’t have funding for. It was ‘the patient story’ where me and 11 other leukaemia survivors talked about the process. The leaflets are so dry and, with the demographic of Hammersmith being one where English is not necessarily the first language and literacy levels are low (let alone going through the scariest of times!), a video that could be translated and shared was so much ‘warmer’.

I then got involved with DKMS. I loved doing donor drives in schools, universities and workplaces. As a teacher I was happy to give talks and assemblies. DKMS said I was the first ex-patient to volunteer and the personal experience and photos I shared meant people found it difficult to say no! It happened to me. It could happen to you.

I had no idea what leukaemia was before I had it, nor the symptoms or the cure. I wasn’t on Instagram back in those days, so had no one to share my experience with whilst being treated. I’m not sure if that’s a good or bad thing, but it has to be a good thing to share the symptoms. I know people are unnecessarily dying because the symptoms are so vague. I was lucky that I was dying from pneumonia and had an angel of a GP, but I know that this isn’t always the case, especially with babies and children. My heart breaks when I see the pictures of them going through treatment as I know how bloody awful it is.

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