"Mummy's Star made it possible for me to be able to be a mum without being labelled 'a cancer patient'. "
Kathryn's cancer symptoms were masked by her pregnancy. It wasn't until she could hardly walk that a specialist discovered the tumour on her hip. Her cancer is now incurable.
This is her story...
I was 23 years old when I was told to try for a baby as I may be infertile. Weeks later I was pregnant but what I didn't realise was that my issues were not fertility related, but cancer related. My pregnancy actually caused a delay in my diagnosis as the cancer symptoms were masked by the pregnancy. It was all put down as pelvic girdle pain, and I was seen by physio for this from 16 weeks pregnant.
I had limited mobility and would wake up some days unable to walk. Or I'd be walking and all of a sudden unable to move one of my legs. Pain would wake me up during the night. I couldn't bear weight on my right leg at all after I around 20 weeks pregnant, which meant my baby couldn't engage in my pelvis and spent the entire pregnancy firmly tucked under my ribs. Stairs were practically impossible! Eventually I discovered a lump over my hip.
I was diagnosed on the maternity ward by an Orthopaedic specialist. They gave me a side room, where I waited feeling abandoned for two days, until my Consultant Obstetrician returned to work and could tell me more. I spent that weekend crying and felt like being avoided by the other hospital staff; they just didn't know what to say to me. One nurse tried to find me a leaflet from Macmillan, but there wasn't one that fit. It was such a rare cancer type that they didn't have any on hand.
I felt like the earth was shattering beneath my feet. Family would talk to me and it just sounded like white noise. All I could hear was the specialist saying 'Yes, you've got cancer and it's in your pelvis.' over and over again in my head.
I didn't even know that you could be diagnosed with cancer during pregnancy. I thought it was a time that you just can't be touched by difficulty or illness. The happiest time in your life, a pregnancy bubble. Now I know that isn't the case.
I had to stop breastfeeding following surgery, as I was just too ill. It also meant my daughter wasn't able to socialise with children her age. I couldn’t to attend the baby groups that I planned on as I couldn't get on the floor to join in. I felt so alone, but didn't know where else to turn. I wrote about my situation on an online group and that’s where another Star Mum directed me to Mummy’s Star. I had never heard about them, but from that moment I knew I wouldn't be alone anymore.
Mummy's Star made it so I could be in contact with other mums in the same situation as me. The Forum is full of mums in the same situation; it’s a place where I could write exactly how I felt and receive no judgement. We all know we've been diagnosed with cancer, but within the Forum we were just a bunch of mums whose circumstances bought us together.
They made my darkest hours, the ones where I sat and cried on my own, just a little less lonely. I received emails, phone calls, even a card and two hats for baby Norah.
I also received some financial help (through the Mummy's Star small grant programme) to buy a rocking chair. Following surgery, this allowed me to cuddle my baby and rock her to sleep while I was physically weaker.
I was told that my cancer had returned when my daughter was nearly 3 and by September the same year I was told I was incurable. Mummy's Star was the place I turned to again and I was surrounded by support and love. I'm now in the Four Star Mummies Forum for those mums whose cancer is incurable/stage 4. I know that none of my worries will ever be dismissed, no head tilts and no (most likely unintentional) patronising comments or voices. Sometimes other people don't know what to say and you might find your support network will alter, following a cancer diagnosis. But I know I’ll always have support through the Mummy’s Star Forums and Support Workers.
Cancer is now a part of my life forever. My mobility isn't going to get better. I've had my pelvis removed, which has meant my right hip isn't stable and my knee has also started to become arthritic. I also wear a spinal brace due to an instable spinal cord. I've just started chemotherapy after receiving some radiotherapy. As I'm incurable, they aren’t looking to cure, but to control the symptoms and gain some stability in disease.
Each time my mind quietens, I will always start to think about the 'what ifs'. It's taken away what I thought being a parent would be.
However, it did make me realise how precious life is. It's allowed me to cherish every minute I'm with my daughter, even the snotty noses! Cancer has taken so much from me, but it has also given me a different perspective on life. And Mummy's Star made it possible for me to be able to be a mum without being labelled 'a cancer patient'. I know that no matter how far out I am from diagnosis their support will always be there.
I want other mums and parents to remember:
You know your body best, you are the one that lives in it, daily. If you think something isn't right, get them to explore it thoroughly and rule out possibilities. Don't think it won't be you.
Know that, if it does happen, it doesn't have to be the end. Support is out there and you don't just have to be 'that mum with cancer'.
Kathryn x
