'I went straight into hospital for treatment and was told I would have to stay in for four weeks. My heart broke; I had never been away from the children, my world revolved around them.'
Lynsey was diagnosed with a rare form of blood cancer when her second child was just six months old. Diagnosis and intensive treatment transformed her as a person and as a mother.
This is her story...
Before my illness, I had three wonderful years with my wonderful son Theo; watching him grow, attending every baby group I could. I was so excited to welcome a new baby girl and to repeat it all again. When Tillie was 3 months old, I was also keen to get back to playing netball. At one game, I fell into the post and immediately bruised my arm; it came up so quickly and I also noticed red dots all over my legs. I didn’t panic, just thought it was a bad fall.
After a week it was still there so I went to the GP who sent me for blood tests. I mentioned some small bruising on my chest where Tillie would nip my skin while breastfeeding; something that I now see as my baby telling me something was wrong.
People often ask me if I was tired or feeling poorly, but I just thought this was the reality of having two little ones under 3 years old. Yes, I was exhausted, but also having the best most blessed time with them. I didn’t give anything else a second thought.
On the evening of my tests, a doctor rang and advised me to go straight to A&E; my platelet count was below 30 and that I might need a transfusion. I was given steroids straight away to bring my platelets up before a bone marrow test confirmed I had ALL: Acute Lymphoblastic Leukaemia.
A day later, I went straight into hospital for treatment and was told I would have to stay in for four weeks. My heart broke; I had never been away from the children, my world revolved around them. Tillie was just six months old and I had to immediately stop breastfeeding. I cried as I pumped milk in the hospital to wean myself off feeding her.
So many questions went through my head: who would feed Tillie and what milk would suit her? Who would make the children’s food, choose their clothes, take them to baby and toddler groups, comfort them when they were upset, put them to bed? I felt like I was in a nightmare.
Lynsey during treatment
I had to pick myself up very quickly and realised that I was in a sink or swim situation. The only way to get back to my children was to fight and that’s exactly what I did. I started by, very easily, putting my faith in my family, who I knew would look after the children like I would.
The first charity I contacted was Mummy’s Star. Pete picked up my email and helped to bring some light to a very difficult situation; the understanding and empathy he shared made me realise I didn’t need to feel alone.
I started rounds of chemo. The chemo caused my blood counts to drop and I was highly prone to infections. I was so tired. My body felt like it was continuously fighting, always a fast heartbeat (palpitations) and a little breathless, as though I was running a constant marathon. My low platelet count meant my periods stopped. My hair fell out but didn’t leave me completely bald I shaved it to make it equal. Steroids made me blow up and I held a lot of water at times. The funny thing is, it was all bearable and became normal. I did my best to move, stay focused, and beat each day.
I began to realise that my children’s lives didn’t need to be turned upside down as much as I first thought. I set to work putting my energy into fighting the horrid disease and using my children as my ultimate purpose. I created a collection of photos, drawings, and writing to give Theo a visual explanation of what was happening and what was going to happen. This became the book Mummy Goes To Hospital and has proven to be a useful resource for others, still used today.
Mummy Goes To Hospital has a Facebook page and is available in our store or from your Support Worker
We then found out that I carried the Philadelphia positive gene which meant that, even if the chemo got rid of the Leukaemia, there was a high chance it would return. I needed more high-dose chemo to get my disease level to a significant low and then a stem cell transplant. My brother was tested as a possible donor but unfortunately was not a match for me. I was blessed to find a 100% match on the transplant list, a stranger, someone I didn’t even know.
In September 2019 I had the stem cell transplant: a second chance at life. I am forever grateful to my donor for this selfless act.
My transplant involved more chemo and radiotherapy. All my body hair disappeared, and I was very poorly for a few weeks whilst my body welcomed my new cells. I couldn’t eat, so was given nutrients through a drip. I lost weight and was very tired. It was a long recovery but with strength and determination I began to gradually get better.
All my treatment meant a lot of time in hospital. It kept me here, but also meant spending a year in and out of hospital, away from my children. I have to be completely honest though, and this upsets me when I think it even now:
When I did arrive home I was so happy to see the children and be back with them, it was almost too overwhelming.
I went in complete panic, scared of getting an infection from them or dropping them if I picked them up because I was so weak. I felt like I had forgotten what they needed; my mum and husband had done such a good job with them that I worried I would mess it up. Luckily, it didn’t take me long to realise how much I needed them and how much they needed me, and it made our bond even stronger.
What would I tell another person with a blood cancer diagnosis?
There are so many scary thoughts about blood cancer, but there are also so many clever people around who continue to find the medicines to fight it.
The symptoms can be excused for so many other things: don’t let them go unnoticed!
Cancer comes in so many different forms and journeys - be confident in your own fight, be grateful for each day, and take each event as a lesson to prepare you for the next day!
Lynsey and family, 2022