I wanted to reach out to the forum to see if there are any long term cancer survivors, particularly childhood cancer survivors. At the age of 7 I was diagnosed with ALL PH+ and at the time this cancer was quite rare and also not easily cureable. I went through intense treatment, some I remember, some I think I have blocked out from memory. I experienced graph vs host disease which led to a medical trial being needed to save me as doctors were running out of time. I am now 25. But I worry all the time about my cancer coming back or developing a different form of cancer. Mostly because I am not sure my body could deal with all of the treatment once more. Due to my treatments I have been through the menopause, I have asplenia, high cholesterol, Primary ovarian failure, hypothyroidism and gastro issues. So ontop of all of the past treatment and illness, these are also all in themselves co morbidities.
I recently got married and moved in with my husband in France, but no matter how long it has been event free, I am always worried that things will come back, or that I will die young and not get to share the rest of my life with the one I love. It naws at me all the time. Even time with friends, beautiful moments are always tainted slightly by the big feeling of mortality and one day there being a doctor telling me I am going to die. I don't know if I fear death or repeating the cancer treatment more. There are not many people around me at my age who I can talk to and share about this, if I do they often cannot understand the deep weight and worry that comes with this. I was hoping someone here might have a similar story or insight, a worry and understanding that although I am greatful to be alive it sometimes feels like my death has just been prolonged and that I will never get to experience that long life that some people have. In most honesty, I didn't think I'd be alive at 25. I am worried I am going to die in the next 5-10 years. I just want to live life normally and feel secure that I am not going to die in the immediate future.
Thank you kindly
Hi OFy
I'm sorry to read how much you've been through and I can totally understand your fear that your cancer may one day return. I don't think it matters how old you are when you're first diagnosed with cancer, we all share that fear.
The online community is divided into different support groups so I'm going to recommend that you join both the acute lymphoblastic leukaemia group, as you'll then connect directly with others who have the same type of cancer as you, and also the diagnosed at a young age group, where you can talk about your experience of being diagnosed with cancer young.
To join, just click on the links I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.
It would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
