Kim was first diagnosed with a low grade fibromyoxiod sarcoma in my left hip at the age of 13 in 1997. I was then diagnosed in 2015 with metastasised low grade fibromyoxiod sarcomas on both of my lungs.
When were you diagnosed and what with?
I was first diagnosed with a low grade fibromyoxiod sarcoma in my left hip at the age of 13 in 1997. I was then diagnosed in 2015 with metastasised low grade fibromyoxiod sarcomas on both of my lungs.
How did you find out you had cancer?
Completely by chance! I found a lump on bm chest and went for an x-ray. The lump was nothing but this is how I discovered the masses on my lungs. I never had any and still have no symptoms. I always knew that if my cancer were ever to come back it would be in my lungs/chest, however after 18 years cancer-free I never thought it would come back and I was also told it was extremely unlikely to ever come back.
What did you think and feel when you were diagnosed?
Shocked, scared, disbelief, anger, upset. I had only just got married and was/still scared about what my future holds.
How did the people around you react?
My husband was with me when I found out; he was devastated but has been my absolute rock every minute and every day since my diagnosis. My parents and sister were also devastated and scared but have helped me deal with the past six months by supporting me and keeping me busy.
What treatment did you have?
I’m on a daily oral treatment called Pazopanib – this is controlling the sarcomas but can’t cure me. This drug is not available on the NHS and I therefore have to fund it privately.
How did you feel through treatment?
When I first started taking my tablets I was worried about how poorly they might make me feel and the possible side-effects. However, I am extremely happy to say that my body is tolerating the drug amazingly and I have no side-effects. The tablets are also doing what they need to – stopping the sarcomas from growing any bigger.
What happened after treatment finished?
My treatment is on-going. I will be on these tablets for as long as they work – I have everything crossed that they continue to work for a very, very, very long time. I am also forever hopeful for future drugs and medicines. There seems to be so much happening in the world of cancer medicine at the moment – who knows maybe they will find a cure for this type of cancer.
How did you get involved with Shine?
I found Shine via Facebook and Google.
What difference has Shine made to you?
It has been fantastic – being able to connect with other people of a similar age going through the same emotions, feelings and experiences. Although I haven’t found anyone else in the Shine community with my type of cancer the support and love from each person is priceless. When you’re having a bad day or anxious about scan results it’s so comforting to be able to turn to people who truly understand.
How do you feel now about your experiences?
What‘s been the biggest change you’ve faced? If I could I would change it all in a heartbeat and go back to the day before I was diagnosed. However, it has made me a stronger person more determined to live life to the fullest. The two biggest challenges I have faced are being told I have a type of cancer that can’t be cured and then being told there is nothing the NHS can do for me – to be told there is a drug available but you can’t have it unless you can pay for it yourself is gut wrenching.
If you could give one piece of advice to yourself before your what would it be?
To not worry! Easier said than done, but I get angry at myself for the silly little things I used to worry about. As long as you have your health, family and friends you don’t need to worry about anything else.