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ALICE'S STORY

"I was determined not to miss out on all of those things that most mums take for granted: pushing my baby in his pram, lifting him into his cot."



Alice was taking her 12 week old son swimming when she felt a pain in her leg. Assuming it was a pulled muscle, she carried on until eventually that leg gave way and revealed a rare tumour inside her thigh bone.

This is her story...

Bertie arrived in February 2017. We were both very poorly initially, I developed acute hyponatremia (low blood sodium levels) during labour and became unresponsive so Bertie was delivered via emergency c-section. When I awoke from the general anaesthetic, I was in intensive care, as was he. He was also hyponatremic, because he had been sharing my blood supply, and this resulted in him having seizures on delivery. I didn't meet him until 18 hours after he was born, but the midwives printed photographs for me!


I was so worried in those first days, just waiting for things to improve, but we both recovered. Amazingly after five days of tube / bottle feeding, Bertie started to breast feed. We never found out what caused the hyponatremia, and I was eventually told I could just go home and enjoy my baby, which was fine by me!


When Bertie was around 12 weeks old, I took him to his first Aqua Babies lesson. I was running late (as usual!) and whilst rushing, I felt a pain in my left leg. I thought I must have pulled a muscle, but as the weeks and months progressed, this pain persisted and got progressively worse.


I didn't visit a doctor initially, as I was told that it was common for ligaments to be loose and susceptible to injury after having a baby. I assumed it was just part of being a mum, so I carried on.

By the time Bertie was 7 months old, the pain had become quite severe and I was walking with a limp. I went to see a physio, who told me I had developed flat feet in pregnancy, which was causing strain on my knee. I was fitted with some insoles and given some exercises to do at home. A month later, things were no better. My knee was swollen and my leg had started to buckle. I was worried that I might fall when carrying my baby. I finally went to see the GP, who suggested an MRI, but I never had it; a few days later my leg gave way when walking down a large step. It was the last day I ever walked on that leg. It had become completely immobilised. I went straight to A&E where I was x-rayed and told I had ruptured my patella tendon. I was given a leg brace and told I would be referred to a fracture clinic.


I was so worried about being immobile with a young baby that I arranged a private appointment with a knee surgeon the next day, in the hope that I could be treated more quickly. That appointment probably saved my life.

The knee surgeon requested an MRI which showed that I had a tumour inside my thigh bone. It had fractured through the bone and caused my leg to give way. Subsequent biopsies and scans confirmed the cause was high grade osteosarcoma, a rare form of bone cancer. Most worryingly, the cancer had also spread to my lungs. Bone cancer has many symptoms in addition to pain, which in hindsight I had experienced. However, I had dismissed all of them as pregnancy related.


Of course I was tired - I had a baby! Of course I was losing weight - I had a baby! I had lost touch with my body and focused on the narrative of motherhood.

The overriding emotion I felt on that diagnosis was guilt. If I had sought help sooner, maybe things would not have been so bad. I completely blamed myself. The guilt was amplified by the fact that I had to stop breastfeeding. After adapting so well to breastfeeding, my baby was not impressed, and my poor husband was left with a furious baby who was still up three times a night demanding mum and refusing any bottle!


My treatment involved chemotherapy which, unfortunately, due to toxicity of the drugs involved, had to be administered as an inpatient. I spent three weeks out of every five living at the Christie. On my weeks off treatment, I would usually be readmitted to hospital due to infection. With a husband who works full time, that's a lot of child care! We used the grant that Mummy's Star provided to help fund a childminder for Bertie one day per week.


As my tumour was so advanced, I had no option but to have an above knee amputation. Learning to walk again on my prosthetic has been hard, but I was determined not to miss out on all of those things that most mums take for granted: pushing my baby in his pram, lifting him into his cot. In many ways, having Bertie was the drive I needed for my rehabilitation.





In September 2021 he had his first day at school, and I was proud as punch to walk him there. I take nothing for granted now, and am always the most emotional at sports days, nativities and celebration assemblies!

I was put in touch with Mummy's Star quite soon after my diagnosis and this was pivitol to my experience with cancer. Connecting with so many other mums going through something similar to me normalised my feelings, relieved the guilt, and made me think that if they could do it, so could I. Where I had felt completely isolated and alone in my situation, I now felt a sense of belonging to a truly special group of people. Even now, my identity as one of those women, and Bertie as my Star is so special to me. It is a defining part of who I am.


I am now 5 years clear of cancer, and am so incredibly grateful. It hasn't been easy adapting. The effort it takes for me to show up every day can be overwhelming, and sometimes I forget this and burn out from time to time.

I went back to work too soon after my treatment finished and would advise others to pace themselves as much as possible.

I also live with guilt because Bertie will have no siblings. He is constantly asking for a brother (not a sister!) and it makes me so sad that he is alone. I would love to give him what he asks for. The chances of me conceiving post-treatment however are very low, and I live with the fear that having another baby would lead to my cancer returning, despite being told the two are unrelated. I could never forgive myself if that happened and I think the toll a pregnancy would take on my mental health would be detrimental to Bertie. It would also be incredibly hard on my mobility. I know one day he will understand, and hope that when that day comes, he will be proud of his mummy.


My advice to anyone experiencing cancer and pregnancy is to accept all the help that is offered, and to focus on what you can do rather than what you can't do. Set yourself small goals and be kind to yourself. And always remind yourself that one day your little one will hear your story and think, "Wow my mum was awesome!"



Alice x







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