Gosh I'm so sorry that you're in such a scary and confusing space. I'm also sorry my answer might not help much, I dint have experience of this specific cancer but saw you didn't have a reply and wanted to reach out to you.
 

I too was repeatedly ignored and shunned by the GPs - keeping a diary as 'evidence' to build my case to be taken seriously and still they wouldn't listen. Took an A&E trip for something else to get my surprise diagnosis nearly one year ago - I really know how unfair it is and how angry you feel. All I could say for weeks was 'I bloody knew it and no one listened!!!'

It might not work for everyone and can feel weird at first, but I found trying to use guided meditations helped so much (on youtube). Even if I could have a quiet mind for 5-10 mins where my head wasn't in a horrific spin gave me relief, plus it gets easier. Let your friends and family help, tell them how you're feeling. Also try to self care - do what makes you feel relaxed. Walks/long baths/quiet time with a book. It worked for me and helped me cope with my diagnosis and the subsequent weeks and weeks of waiting for more tests. 
 

Wishing you positivity and healing

Jess x

Thank you so much for your reply iit meant a lot and helped.  You sound like you have found a place of balance with situation which makes me feel hopeful I will be able to deal with whatever is ahead.   It's so hard when it could have been avoided.  I am going to take your kind words and make a real effort tomorrow to start exploring some relaxation. Realistically worrrying every minute won't help and I have to "get a grip".  Thank you for reaching out it has helped in a moment of complete crisis and I really appreciate that.  Please stay as well as you  are able and know I am sending you the most heartfelt good wishes.  Take care. 

Bless you lovely, please don't be hard on yourself. This is a massively traumatic time for you and whatever you're feeling is absolutely ok. You need to process a lot and it's exhausting. There are days when I'm not sure I 'have a grip' but I let them pass as they need to and it's ok. 

I hope it's lovely and sunny where you are today. Maybe go mad and treat yourself to a coffee outdoors in the sunshine or have a video call with a friend? I'm starting a new book later on and also managed to get my fave biscuits in a delivery yesterday so that's my day sorted. Focus on the little things.

Wishing you sunshine and serenity ️ ️ 

Thank you so much.  Biscuits sounds a good plan.  Suddenly everything normal feels foreign to me.  Took me an hour to get dressed as couldn't think what I was doing.  I think focusing on biscuits might be a good way to go.  Thank you your kindness means such a lot.