Today we hear a new experience of sarcoma as told to us by Lizzie. Thank you Lizzie for bravely sharing your story with our community. If you know anyone who would like to share a story of sarcoma (it can be a survivor, a caretaker, someone who lost a loved one, a patient, researcher, doctor … etc) please click here to share.
EDDF: Tell us a little bit about yourself.
Lizzie: I’m Lizzie, I’m 20 something (I stopped counting at 21) I live in the UK. I work with small children, I love what I do but am thinking of a career change. I’m a Guide leader so some would say a little bit daft, to be fair they wouldn’t be far off the mark there, I’m terrified of heights yet found myself stood on what can only be described as a tiny square of wood 50ft off the floor on camp last year, I was almost in tears when I got down! I also love going swimming and am hoping to start up archery in the coming year.
EDDF: What type of sarcoma do you have?
Lizzie: I had Malignant Peripheral Sheath Nerve Tumour
EDDF: How did you first detect you had sarcoma? How old were you?
Lizzie: Not long after I was in an accident my physiotherapist came across a large had swelling, thinking it was accident related, I monitored it for a while and then after a month with no change went to my GP. I was referred to my local hospital, who sent me for an MRI and passed me on to another department, who then passed me on to another hospital, and another hospital almost a year later I had a PET scan, which showed up irregularities, I was then referred to a sarcoma centre where I had a biopsy two weeks later, and full resection surgery three weeks later again. All in all this took around 18 months
EDDF: Tell us about your experience with sarcoma and sarcoma treatments
Lizzie: I was lucky, even though it was a while between referral and diagnosis, my sarcoma was low grade, my consultants are exceptional and the care I receive at hospital is incredible. I know I was lucky to have my surgery at a sarcoma centre, as some are not that lucky and not end up with that sarcoma diagnosis after surgery and then aren’t in the best place for their care so have to be referred on at that point and sometimes end up in for more surgery.
EDDF: Where do you stand now?
Lizzie: I’m still recovering, I’m very tired all the time but sarcoma wise, I am NED which is fantastic, I need more surgery to get to a better point recovery and function wise but every day is new and I’m enjoying it to the best I can within my limits. I’m hoping to get back to work soon, but currently my stamina is not good enough.
EDDF: How do you recommend others help out their friends or family battling sarcoma?
Lizzie: Use the internet to find support networks, there are virtual support networks out there. I found one within the UK and it’s a space where you can say what’s on your mind without judgement. All those in the group are patients and so have first hand experience, so whether you are newly diagnosed or undergoing your monitoring and want support or have questions it’s a great way to make connections to those in a similar position.
I found one of the most positive things for my friends to do, is to keep in touch, sarcoma can be very isolating, and so having a friend touch base is very comforting. Bringing a girls night in to my sofa was also well received as was the not waking me up mid sleep on their shoulder as they understood I was exhausted but just seeing my friends, or them keeping in touch with a call, card or text and knowing they cared enough to want to make me feel good, put a smile on my face when I was going through some of my toughest weeks.
EDDF: What quote or saying has helped you through this journey?
Lizzie: “If ever there is tomorrow when we’re not together… there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we’re apart… I’ll always be with you.” A.A Milne
EDDF: How do you stay positive?
Lizzie: I surround myself with my friends and family. It sounds mean but I’ve cast aside those people who haven’t cared, or said anything to me through this journey. It’s a cliche, but you really do find out who your friends are when faced with something like this, so by keeping the positive people in my life helps to keep me positive, but I don’t beat myself up about the down days or weeks because they are only natural.
EDDF: Anything you would like to add
Lizzie: Ensure you are being treated by a sarcoma specialist, it really is the best piece of advice I can give, and ask questions at your appointments. Write them down or make a note on your phone when you think of them and take them with you when you go to your appointments, and where possible take someone to your appointments with you, even if they wait in the waiting room. I’ve been the snotty teary person alone on train home and would probably have been so much more comfortable with a friend rather than having to sit opposite a random stranger when all I really wanted was a hug.