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Totally lost

Caroleann99999
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Hello

I was diagnosed with bowel cancer early December. I’ve been told that this is a secondary cancer and they have to find the primary site, possibly stomach. I’ve had a colonoscopy and a CT scan, the consultant wanted to do an endoscopy, which hasn’t happened yet. My problem is that I moved house the week before Christmas and I’m now in a different health trust. Since diagnosis I’ve had no real information from either my former health trust or the new one. My new GP has made the required referral to the new hospital.  I know Christmas has caused delays but I feel absolutely lost not knowing what’s happening. My family are supportive and I’m trying to stay positive, but I cannot answer their questions because no one has told me what’s happening. My new GP is lovely but has warned me what I’m facing is serious. I don’t want to make a fuss and be a nuisance but not knowing is just awful. Truth is, I’m scared. Is anyone else in a similar  quandary?  This all started much earlier this year and during that time I have not seen a consultant until the colonoscopy in November. It’s been telephone consultations only. What I want to know is are these delays the norm?  Sorry this is such a long post!

 

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    Hi  Caroleann ,I am in a similar situation was diagnosed 23/12/21 bowel cancer and have a CT scan on Thursday.I don't think there is anything you can say but just be there for someone if they want to talk or just go for a coffee. Everyone deals with things differently.I can only say try and be positive I know easier said than done and being scared is normal,I am too but do the things you like to do keep yourself busy if you can and spend time with family,friends,pets if you have any as I love to walk my dog anything to take your mind away for a while.Hope you get positive news soon xx

  • Offline in reply to Newyorker48

    Thank you. It does put things into perspective seeing just how many people are going through this. It’s a huge help to have the support from the forum. I really appreciate people taking the time to post encouragement. Good luck with your CT scan. Xx

  • Offline in reply to Caroleann99999

    If you can't get through to GP then you can try 111 and they will normally put through to a doctor / refer to hospital or tell GP to see you that day though takes a while to get through. 

    Re waiting nerves it is a very anxious time and people cope in different ways - I am a plan for the worst, hope for the best type person rather than a think positive person and the best method for me has been distraction and pretending it is not happening to me whilst obviously chasing appointments if delays and doing things like making sure have a will as got kids. So I listen to cheerful music, watch trash TV programms, got all pink fleece bedding and a pink fleece onesie, look out the window over the thatched roof and birds, and exercise 30 mins a day, this can be anything like walking, I do leg and arm exercises from home. But this gets you fitter and also keeps you better mentally, does not need to be anything that energetic and start on less if that's all can do - I think the mental health benefits come at around 20 mins. To appointments I wear velvet or velour as its soft and comforting and can stroke it and its like having the cat or the rabbit with me. 

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