Totally lost

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
  • Hi i am in the same situation ....i got diagnosed with breast cancer a month ago and i am waiting for my treatment plan i have had bloods MRI and CT scans done i had an apt on the 30th to get results etc i got a call the day before to say it is cancelled !!! so fingers crossed i get to go to my new apt on the 6th i am like you i have not been given any info etc my life seems to be in turmoil in my head but keeping strong for my family ...i have never suffered with anxiety or depression but the last two days have been very hard emotionally xxx

  • Hi

    Thanks for your reply. I’m so sorry to hear what you are going through. I have to be honest and say that the lack of follow up and information from the hospitals is very disappointing. Although it does help to know I’m not alone in this and that others are struggling for information too. I find it really hard that I cannot tell my family exactly what my situation is, as no one has told me. Obviously you are going through that too. Sometimes I can be in company and totally forget what’s happening to me, then all of a sudden it hits me.  That’s when it feels overwhelming. Try to keep positive, responses from this site are already helping me to feel I’m not alone  

    Good luck to you, I sincerely hope all goes well for you. X

  • I totally understand you ...i didn't realise there is different types of breast cancer (grades are different) for different types so like you have no info for my family and friends i hate being in limbo, all i have been told my tumour is being treated with chemo first then surgery ...but god knows what route i will be taking as fingers crossed my scans don't show anything else up my life seems to have changed since my diagnosis one day i am positive the next the fear of the unknown takes over but people who are getting over cancer have told me we are experiencing the worst part the waiting bit.

    good luck with all your treatment and sending positive vibes xxxx

  • It really helps knowing how others are dealing with this. Most likely our timing is absolutely the worst! Delays are inevitable at Christmas.  I was dreading Christmas but actually it was the best I’ve had in years. My family were fantastic but it’s quite a strain to stay positive for them. You must have been going through something quite similar too. 

    A good friend who has been through this gave me some good advice. She said “go to every appointment looking your best, do your hair and make up, show the doctors you are not giving up” I’m going to give it a go!!

    i shall be thinking of you on the 6th xx

  • Yes the waiting is hard, but once you know or start treatment you will feel more positive. Have faith that your team are looking at the best treatment for you.I had surgery first then chemo and radiotherapy so we are all different. Just about to have my yearly meet with Consultant and telephone call with Oncologist so they are still looking after me. 
    Best wishes

    Silver 

     

     

  • Thank you.  I hope your review goes well. Xx

  • Hi many thanks for your reply I woke feeling so much more positive and 3 more sleeps to treatment results day   this cancer ride is something I have never experienced before in my life so think the shock took me totally by surprise.

    love Paula xxx

Reply Children
No Data