"The lack of awareness about sarcomas meant I was educating everyone when all I wanted to do was just say 'I have cancer!' and leave it there."
Rachel received her cancer diagnosis on Valentine's Day 2022, when her son was just four months old. Her experience of surgery, recovery and telling her story hasn't been easy, but she has learned a lot.
This is her story...
I had my little boy in October 2021. That New Year’s Eve, when he was just two months old, my partner brushed against my left arm and I noticed a sharp pain. There was a lump on the underside of the arm. Over the next couple of weeks, I noticed that the lump ached, especially when I wore both a jumper and a coat, as it pushed on the area. As someone naturally clumsy, I knew I hadn’t inadvertently done it, as I had been fairly stationary in recent weeks trying to establish breastfeeding.
In January, after mentioning the lump to a few people closest to me, I rang the GP who asked a few questions including what size fruit could I liken the lump to? I was bouncing my baby at the time and admitted between a strawberry or plum. The doctor noted that and asked if I could attend an appointment later that day. I arrived at the surgery extremely flustered. They kindly directed me to a vacant room, where I could feed my baby and they would come along when we were settled in to chat. The GP measured the lump then explained that, as a precaution, I would be put onto the two-week cancer pathway for further investigations.
A week later, my mum and I went off with baby for an ultrasound on the lump that proved inconclusive; further tests would be needed. Over the next few weeks, I would dread the almost predictable call from an unknown number on either a Tuesday afternoon or Wednesday morning. This was always from a hospital administrator who could offer no real information, and I would dutifully agree to attend another appointment the following week.
These calls always made my legs feel like jelly and my heart pound in my ears. By now, night feeds were getting tricky as the lump ached if it got cold or if something touched it.
Fast forward to Valentine’s Day, and we were finally given a date for a face to face consultation. There we were told the lump was a soft-tissue sarcoma and that surgery would happen swiftly to remove it. My first night away from my baby I had a PET scan to assess the situation and see if the cancer had spread. We tried to continue with normal life as much as we could; we saw friends and enjoyed watching our little man develop, smile, recognise our faces and had lots of cuddles.
I felt a duty to protect my friends who knew about the lump so just told them the facts and next steps. Our wider circle were in the dark and would continue to be for a long time after.
One of the hardest parts for me was retelling the story over and over. I found I had to give people the whole series of events, as their understanding was key to me, but also it left me emotionally drained.
The lack of awareness about sarcomas meant I was educating everyone when all I wanted to do was just say “I have cancer!” and leave it there.
Surgery took place in March 2021 and went well. I was discharged home the same day and was so grateful for the sarcoma team's support in allowing me to continue breastfeeding. The scar was neat but quite long and they had had to cut away a good amount of what I like to call my 'bingo wing'. I describe the lump removal as 'a scotch egg': the bad stuff was taken away but with a layer of good cells around it for thoroughness. Before our summer wedding, the doctors advised they were unsure if the sarcoma had originated in the arm but we filed this away and focused on getting married. Then, the Monday after the wedding, we got the news that it was a peripheral nerve sheath tumour, and they were confident it had originated in the arm.
I recovered well and depended hugely on my partner and mum to assist. I couldn’t lift my baby for a month after surgery, in order to heal. But I walked 100miles for sarcoma in April and started to finally address the last few months emotional impact. Looking back, I realised that we kept focusing on what was in front of us, as there was so much unknown. Those months before and after surgery were all about our son: the next steps, weaning, then planning different things for him to hold in his chubby hands and try. He was the perfect distraction.
I now return to hospital every 12 weeks for routine chest x-rays to ensure that there is nothing in my lungs, which is a risk related to sarcoma. This appointment comes round quickly and forces me to think back over the whole journey. which can be emotionally gruelling.
I’ve returned to work and, along with my friends or family who were kept in the dark, I have had to tell them my story. Postpartum dressing is tricky. I’m still undecided how I feel about the ten-inch scar on my arm and try to hide it, which has it’s complications. I am learning to accept my physical changes daily. I’ve always felt relieved that the lump was removed, but also regret that it has robbed me of time and independence, especially when I had just become a mum who was keen to get out and about. I also hadn't ever appreciated the significance of anniversaries until New Year’s Eve 2022 saw me burst into tears at the stroke of midnight. Valentine’s Day 2023 was also a day of mulling over everything I’ve learnt and squeezing my son even harder.
I learned to put my little family first, throughout all this. I've also learnt that people won’t always respond in the most supportive way to the news of cancer. Some friends said the wrong thing, some never mentioned it again or now that surgery is done they act like this bad chapter is over.
Luckily, I’ve got a lot of support and people who acknowledge that every three months, I have to steel myself to go back to being a cancer patient, when all I want is to see myself as a mother; the two things happening so close together shouldn’t become my identity.
I was first introduced to Mummy’s Star through a nurse who mentioned something in passing to my mum. Finding someone who understands has been extremely helpful. It’s so hard in the sea of diagnosis and new motherhood to realise that you have to actually think about yourself, as an individual. They nudged me recently to have a routine blood test, which sounds simple but, after so many tests, it can all feel a little overwhelming and, frankly, silly to say to the doctor “I feel so tired, can you just check my iron/ thyroid?”
I will forever be grateful to the GP who listened and persevered when I was ready to dismiss the lump, and to the whole sarcoma team who acted swiftly, reassured me that I could keep breastfeeding and who continue to be at the end of a phone.
To quote one of the greatest philosophers of the modern age, regarding the future:
"What’s coming will come, and we’ll meet it when it does” ~ Hagrid