Hello Mandy1974

I'm sorry to hear that you were diagnosed with a GIST tumour back in December. It sounds like it's been a difficult few months, and it's understandable that this might all feel overwhelming at times. 

It's great to hear that your most recent scan has shown that treatment is working and that the tumour has, in fact, shrunk in size. Hopefully, the side effects of the treatment are tolerable, and you feel well supported by the team regarding your treatment and care. 

I'm sure that there are other members of the forum living with an incurable diagnosis who understand some of the thoughts and feelings you've shared in your post. Learning to live with a stage 4 diagnosis is not often easy, and it can bring up all sorts of emotions. I wonder if you've had any sort of counselling support to help you begin to process your diagnosis and the changes that this has meant. If not, then I'd really encourage you to talk with your specialist cancer nurse in the first instance. It may be that there is a specialist cancer psychology service that you can be referred to for support. Alternatively, if there is an organisation such as Maggie's in your local area, you can drop in for a cuppa and chat with one of their specialist cancer support workers. 

I'd also say that the language we use when talking to ourselves and others can be really important in influencing how we feel. You have every right to be angry and overwhelmed by your diagnosis. Sometimes we can get stuck in the negativity of things and it can help if we choose to change the language we use when talking to ourselves. You've mentioned in your post that you feel you're "living in the but" and the example you've shared is "but I still have cancer, but it's never going away". If you can perhaps try to reframe unhelpful thoughts into something less negative, it can help. So, for example, "I still have cancer, but the treatment I'm having has shown that the tumour has shrunk" or perhaps "it's never going away, but the specialists are doing all they can to keep me as well as possible". It's not necessarily always easy to reframe our thoughts but with time it can help to break the unhelpful cycle of thoughts. 

Hopefully some of our members who are living with an incurable diagnosis will pop along soon to say hello and share their experiences and tips with you. In the meantime, if it would help to chat with one of our nurses about how you're feeling, Mandy1974, you are most welcome to give them a call. I know they will be happy to listen and offer any advice, information and support they can. If you'd like to talk with them, they're available Monday to Friday, 9am to 5pm on 0808 800 4040. 

Keep posting here in the Cancer Chat community if it helps to have somewhere safe to put down in writing how you're feeling. We're here for you. 

Sending my best wishes, 
Jenn
Cancer Chat moderator