Louise Weatherley

For Louise, she was told her symptoms were a result of the menopause, and she thought it was just another thing that she, as a woman, had to go through. But as her symptoms became difficult to manage, Louise knew something wasn’t right. What followed was a shock phone call from the hospital telling her it wasn’t the menopause – it was leukaemia. Here, she shares her Spot Leukaemia story.

Back in 2019, I started having irregular periods, with heavy and prolonged bleeding. My daughter had just started her periods, so I thought we were coming into sync with each other or coming out with period sympathy. After a while I decided to go to the doctors as it was getting too much. They said they would do a smear to make sure that everything was OK. However, my smear came back with cell changes, so they sent me for a biopsy which came back all clear but suggested I needed a coil put in to help with the hormone changes.

It was then that I told them about my night sweats, and they said more than likely it was the start of the menopause. They asked about my mum and what age she started, but unfortunately she had to have a hysterectomy when she was younger. I was also given anti-depressants to see if that helped.

Over the next few months, my periods did settle down, but I was feeling worse. I was always so tired and dizzy; I had bone pain and night sweats, feeling like I was on fire; I kept getting eye bleeds, bleeding gums, I started losing weight, had headaches, blurry vision; I just felt terrible, but because I was told it was the start of the menopause, I just carried on. I’m a mum, wife, and have two jobs, so I just thought I was doing too much and running myself into the ground.

Then I started getting a pain on the left side of my tummy, which itself was hard. First I thought I was getting abs! But then it hurt and felt like a lump. I was also leaning over to the right, and it felt a bit like when you’re at the end of your pregnancy and baby has their bum pushing up and you’re just full up with a baby, no room.

On Monday 17th February 2020, I’d had enough. I was changing my bed sheets and was trying to put the quilt inside the cover and I couldn’t do it, I just couldn’t do it. I sat on the floor and cried, proper cried, snot bubbles and shoulder shuddering, the lot. That was the moment I was like: ‘I can’t cope with the menopause; there must be something they can do to help women.’

I phoned my doctors and got an appointment that afternoon. I saw the nurse and explained everything, all my symptoms, everything. She felt my tummy and said it was hard so would refer me for a scan and said to come back tomorrow for a blood test, just to check that everything was OK. Tuesday morning, I had the blood test. Wednesday morning, I had a phone call from my doctors saying the hospital had run them and I needed to pop along to A&E as there was something amiss with my blood.

Then my phone kept ringing with a withheld number. I ignored it, but after three calls straight after each other, I thought it might be important. It was the doctor from the hospital. He told me to come straight to A&E, with a bag packed for a few nights, as there was something wrong with my blood and I needed some help. I said I would pop along later as my kids were on half term and I needed to sort out dinner and all those sorts of things. He said to me, “Do you want me to tell you what’s wrong with your blood?” I said OK, thinking he was going to say I had really low iron or I had an infection, but he told me over the phone when I was on my own, that I had chronic myeloid leukaemia (CML). I don’t remember much after those words, apart from the words ‘mutation’, ‘cancer’, and ‘treatment’.

I packed a bag, for a few nights, drove myself to hospital, sat in A&E, and waited for this doctor to come and get me. I still thought that he had got it wrong, and I just had an infection. He came and found me and I was whizzed through. I had loads of bloods taken, ECG, scan booked, went through all my history and symptoms. He said that the reason he told me on the phone was because I was flapping around, and he was worried I wouldn’t come to the hospital straight away; he said my blood was so thick I was at risk of having a stroke.

I was in hospital for three weeks and came out just as lockdown was put in place. The last 18 months have been very strange indeed. I’m in the chronic phase, and I was put on nilotinib, which I did well with until December 2020, then I stopped responding. I was put on bosutinib but had a really bad reaction to that and was taken off after 10 days. I’m now on ponatinib and have been since May 2021.

When I was going through my symptoms, and talking about it with friends and family, it was a laughing matter as everyone thought it was the menopause, which is why I never went to the doctors until I couldn’t cope – I thought it was just another thing of being a woman and I would come through the other side. I had no idea the symptoms that I had that are really like the menopause are also really similar to the signs of leukaemia. That’s not to say everyone who has these symptoms should panic they have cancer, but be aware and don’t just assume it’s the menopause. When I write down my symptoms now or tell someone, I think I’m crazy not to have followed my gut instincts. I should have gone back to the doctors and not just accepted it was the start of the menopause, but I didn’t want to make a fuss. Had I had a simple blood test right back at the start, it might have been caught earlier.

Useful links on exercise

Returning to a “normal” life can see you reintroducing exercise into your daily routine. The following links contain excellent resources about exercise during and post treatment for a blood cancer.

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