Birmingham, UK resident Kerry Hamilton opened up to us about her ongoing battle with Leiomyosarcoma.
Tell us a little bit about yourself.
My name is Kerry. I work as a territory sales manager for a spectacle company, which I absolutely love. I’m a naturally positive person with a great family and a super special group of friends. I like to get the best out of every situation… and to laugh a good laugh. I’m also a tomboy who loves getting outdoors with my rescue dog, Lady, and also enjoys the occasional chance to get glammed up for a night out with the girls. I lived in Africa for about a year working with lions and other animals. I now live in my little home, which I love decorating (and spend a little too much money on!).
What is sarcoma?
From my understanding, sarcoma is a rare, aggressive type of cancer that develops in the muscle, bone, soft tissue, etc. More specifically, my type is leiomyosarcoma, which develops in the soft tissues. The main thing that stands out about sarcoma is that it’s so rare and still relatively unknown to most people.
How did you first become aware of your diagnosis?
I had symptoms for a while that raised concern. I’d been to the doctors a few times — misdiagnosed sarcomas are so hard to detect. I was finally referred to a specialist that performed a biopsy and an MRI scan. The biopsy results took longer than normal to come back as it had been sent to various specialists across the UK to be sure as it was so rare. It was then my oncologist who confirmed it was leiomyosarcoma.
Did you experience any symptoms before you were diagnosed with sarcoma?
Yes, the first tumor was sitting in my cervix so my symptoms were related. I had unusual spotting in between periods along with other mild symptoms. I had been very unwell while in Africa some years previously, which I’ve since found out was likely to be connected to the cancer. When diagnosed, it was already bigger than a tennis ball. The second time I didn’t have any symptoms. The tumor, which was in my right lung, had been picked up in a regular CT scan. The current — and hopefully final — time it has appeared sitting just outside my upper bowel. Unfortunately I have had more symptoms including constant pain, tiredness, and weight loss.
Where and how did you seek information about sarcomas?
When I first received the diagnosis, I picked up a Sarcoma Macmillan booklet on the way out of the hospital. Since then, I have researched Sarcomas through websites — Cancer Research, Macmillan, and Sarcoma UK — and my oncologists and their teams.
What treatments have you received?
After the first diagnosis in 2015, I had to have a radical hysterectomy at the age of 35. The tumor was sitting so close to my bladder so they recommended 6 weeks of daily radiotherapy to make sure they had covered all potential areas of disease. In May 2016, I was diagnosed with secondary lymphedema in my left leg. Fluids are no longer able to to move out of my leg, so they sit there an cause it to swell. I have ongoing treatments for this — specialist stockings, massages, and exercises. After my second diagnosis, I had keyhole surgery to remove the tumor from my right lung. I will undergo major surgery once again at the end of this month to remove the tumor sitting on my upper bowel. It will be a long recovery process, but hopefully no further treatment will be needed.
What’s the best piece of advice you received once you received your diagnosis?
I’ve received a lot of advice — from specialists, oncologists, doctors, friends, family, colleagues… The best piece of advice I’ve received is probably to talk to people and let them in. I’m quite independent and don’t like to sound negative… I hate to see my loved ones worried or upset, but I’ve slowly come to realize people are just as strong as I am and can support me better when they know what I’m going through and how I’m feeling. Let people in. Stop being proud. It’s true what they say: a problem shared is a problem halved.
What do you do to deal with the stress that comes with a cancer diagnosis? What makes you feel strong?
One motto has gotten me through all of this: There is always someone worse off than you.
I’ve had many challenging times over the years (and probably more still to come), but I often remind myself what I have. My family, friends, home, neighbors… an employer who supports me… my dog who has been by my side through all of it with a wiggle and loving wet nose… These make such a difference and I value them every day.
Not everyone is as fortunate as I am. I never forget this. Everyone faces challenged. It’s how you choose to deal with them that gets you through. I try to turn every negative into a positive. I ran a 10K Race for Life five months after my first surgery, raising over £2500 for Cancer Research. I’m currently planning another fundraiser — the plans aren’t even finalized yet, and I’ve already raised £500 for Sarcoma UK simply by sharing my story on Facebook! This makes me think that my pain and lowest times are not for nothing. If I can help others in any way — getting an earlier diagnosis or help and support from charities — that’s what makes me feel strong.
What’s your biggest fear?
I don’t fear cancer as that [would] mean it won. I challenge it head on… and will continue to do so until I’ve beaten it. Which I will. So, I guess I’ll say clowns!
What’s the most annoying thing people say to you?
People not saying something is the most annoying thing to me. Lack of communication from hospitals regarding appointments, followups, treatments, etc. [Hospitals] are understaffed and working so hard to support so many different patients… but it really does impact your situation when you don’t feel informed.
What helps keep your spirits up? What gives you hope during this time?
I refuse to dwell on the negative. Granted, I have my moments – a deep cry into the pillow or a scream at the top of my lungs. But then I move on… It’s how you choose to deal with it. I hate to be seen as a victim, so I continue to smile. I’ve always been a joker and an optimist, and over my dead body will this crappy disease change that.
Learn more about Kerry’s journey here.