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!

 

  • 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

  • Hi

     

    thank you so much for replying. It does help to know that others are experiencing delays too. Hopefully I will hear from the hospital soon. 

     

    I wish you well in your treatment. X

  • 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

  • I have just had major surgery lm two weeks post op. 

    I totally understand what you are going through, it’s like torture waiting for scans, results, appointments it goes on and on, l started to fall apart, my biggest worry was the cancer spreading, l do believe mine spread due to the long wait between biopsy’s scans....!!!

     I remember phoning a few times and I managed to get a few things organsed, so I would definitely push yourself, even more so as you’ve moved to a different area. 

    The holiday is over now so you can start arranging and get the ball rolling. I’m sending all my very best wishes for what lies ahead.

    Tara

  • Thank you Tara. I’m inclined to agree with you that I need to be more proactive now (just been reading my horoscope). If I had been more assertive earlier this year things wouldn’t have progressed so far so fast. It really helps hearing other people’s experiences. I’ve never joined any kind of forum before and this has been a revelation.

    Hope everything goes well, I shall be thinking of you. Xx

  • Hi

    so glad others have posted as I find reading everyone's posts can help. I hope you have moved somewhere nice as a nice is a big thing too! Let us all know how you get on. My next appointment is the 4th Jan waited 4 weeks to see if results have come back so fingers crossed Christmas hasn't delayed them. 
    Take care now 

  • Thank you so much, I’m amazed at how kind people are on this site. It really is helping me to be more positive knowing I am not alone going through this.

    my house move was quite challenging! Although I had help from family, doing it whilst coping with cancer brings a new level of stress. However, I’m here now and much closer to my daughter which is a huge comfort. Had I known before the sale about my cancer, I would have definitely pulled out. Luckily I didn’t know, moving was the right thing for me to do. 

    I wish you well on the 4th and will be thinking of you. Xx