Dear Amanda It is the scariest time for you but as a retired dentist and a mum of 5 including a disabled daughter I want to say to you how lucky you were that this was found by a dentist. That increases your chance of recovery so much more than if it had progressed till you had symptoms and went to a doctor. Also you are thinking of your beautiful three children so you have such a strong will to come through any treatment. I found that been grateful for getting a relatively early diagnosis and concerned about my daughter helped me through my diagnosis and treatment almost two years ago. I also found having to care for someone else helped me make a rapid recovery but learn to accept any offer of help from family and friends. also when the fatigue hits learn to put your feet up for short rests but keep active when you can. I listened to the webinar on exercise and recovering from any cancer tonight which was great. Any form of cancer is scary and bad luck but we can help ourselves to recover. You will get through this and appreciate every day even more than before your diagnosis. Enjoy all the little things and listen to your body for what you need .😘 ... View more

Dear Donna, I can so relate to how you feel  and it is good to talk about it with others who can understand. I had a rare GIST on my stomach removed 15 months ago. My scar is not quite as long- from belly button to breast and like you I have a wonderful husband but he doesn’t talk about things or feelings even after he had melanoma surgery this year. What no one told me was the muscle pain and terrible fatigue and weakness afterwards. Once I knew that was part of the healing I could accept it and just rest when the fatigue hit. I have found walking in nature has been one of the best things to do & reading all sorts of books when you need to just rest. I tried rubbing my scar with vitamin E oil. It has made it almost disappear and I have been taking CoQ10 with ubiqinol to help healing.like you I feel very lucky that the tumour was found in time to remove it intact as it proved to be drug, radiation. And chemo resistant. I try to enjoy every day and simple things like going for a coffee with my husband is special.. I nearly died after a miscarriage when we were first married and I was told I might need a hysterectomy but I decided to try and adopt even a special needs child. Again I was lucky and had a family but my daughter has Down syndrome then at 14 - after 2 years and 13 specialist consults we found she had Rokitanski syndromeAnd she had to have a hysterectomy.. my life has been very much a series of ups and Downs but appreciating all the good things in my life has made me realise how fortunate and lucky I have been..My sister survived lymphoblastic leukaemia 36 years ago and we both think  that our attitude of believing we will survive has helped us.  we all have down days and sometimes the body just needs time to heal and rest and a good cry can clear the air. Reach out when you need to and often easier with other survivors than family. Keep well Toni ... View more

Hi Toni3,   I’m sorry your feeling so sick  after CT. I hope your bloods come back fine but it does sound like your thyroid has  taken up the iodine. It makes you feel pretty crappy. I’m glad no more contrast. I’m hedging you still have a thyroid gland with Hashimotos. I don’t have a thyroid anymore but they assured me with contrast I would be fine. I still don’t feel great afterwards. Endocrinologist says no more contrast. I’m happy with that. The things we learn along the way.  Wishing you a speedy recovery.  ... View more

Dear Jubbly, I was unexpectedly diagnosed with a GIST on the top of my stomach last July after complaining of pain in my chest and a cough for over 2 years. Blood tests, endoscopy, heart tests were all normal then I followed my "gut feeling" and saw another gastroenterologist at RNSH who ordered an abdominal ultrasound before doing another endoscopy and suddenly I was having this surgery. It was quite scary not knowing much about it. and when I got the malignant diagnosis I was grateful that it had been found almost by accident before it got even larger or spread. Because it is so rare I was not given much information and have been doing my own research. It has made me very tired and I am about to try some acupuncture to strengthen my whole system. I still get days when I get quite scared especially before my first follow up scan but mindfulness meditation has helped so much. Hope you are doing well now.    ... View more