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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!

 

Parents
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    Hi

    I am not in the same position as you and so sorry to hear you are going through all this. I was diagnosed with breast cancer in September and am currently recovering from some major surgery. But I can tell you there is a lot of waiting around either for appointments or results and plans to deal with everything. That said my experience is that the consultants are good and your case is discussed regularly. I can imagine Christmas and Covid have had some delay and have seen lots of posts from others who are still waiting on appointments. You are definitely in the system if you've been in touch with your GP. Just stay in touch with them and you should get the next stage through. They will have to send notes. I was placed on an urgent referral back in April and had both cameras and CT scans as originally they found a lesion in my upper bowl. They are leaving this for now and I didn't get to speak to a consultant just the GI nurse who was allocated to me. You can ask to see if you have one yet. The final scan they did on me found the breast cancer. Since then things have gone fairly quickly but there has been waiting for biopsy results appointments for second biopsy and waiting again. I am now waiting to find out if I need chemo. You will definitely feel more in control when you get some more information. I hope that it might help to know you are not alone. It's very scary and your mind goes to the worst outcome but try hang in there. Hopefully other people will be able to give you some more experiences to hopefully support you.

    Take care

    x

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    Hi

    I am not in the same position as you and so sorry to hear you are going through all this. I was diagnosed with breast cancer in September and am currently recovering from some major surgery. But I can tell you there is a lot of waiting around either for appointments or results and plans to deal with everything. That said my experience is that the consultants are good and your case is discussed regularly. I can imagine Christmas and Covid have had some delay and have seen lots of posts from others who are still waiting on appointments. You are definitely in the system if you've been in touch with your GP. Just stay in touch with them and you should get the next stage through. They will have to send notes. I was placed on an urgent referral back in April and had both cameras and CT scans as originally they found a lesion in my upper bowl. They are leaving this for now and I didn't get to speak to a consultant just the GI nurse who was allocated to me. You can ask to see if you have one yet. The final scan they did on me found the breast cancer. Since then things have gone fairly quickly but there has been waiting for biopsy results appointments for second biopsy and waiting again. I am now waiting to find out if I need chemo. You will definitely feel more in control when you get some more information. I hope that it might help to know you are not alone. It's very scary and your mind goes to the worst outcome but try hang in there. Hopefully other people will be able to give you some more experiences to hopefully support you.

    Take care

    x

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