Newly diagnosed - and it all seems to be taking so long

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Hi.  I'm 64 female and have type 2 diabetes.  I went for my monitoring bloods in August '23.  Surgery rang and said need to repeat bloods.  After this my GP rang me in the evening and asked me to go in to the surgery the next day.  I asked for a telephone call instead as I should have been at work, but she was insistent.  Went to the appointment and she said although it is known that I don't store my iron, and have spent years having low ferritin, and have been sent for iron infusion and it fixes me up.  She was having none of this, and said she would be referring me on the 2 week-wait to Gastroenterology as there must be an issue.  I am also known to have long-standing Barrett's oesophagus for which I have taken continuous PPI treatment.  I had just had my routine bowel screening test which was negative.

Fast forward, I have no had 3 Gastroscopies with biopsies taken each time, a CT scan and a PET scan.  The biopsies were were negative for the first two, but that there was a suspicious looking lesion at the cardia (GOJ - gastroenterological junction).  It is now known to be into the first two layers of my stomach.  I was only told this was cancer on 03/01/24 when I saw the Nurse Specialist (know I am aware that she is a cancer Nurse Specialist).  I now have to have an MRI scan this afternoon as they think there might be a 'spot' on my liver.  I know that I have to another gastroscopy and a laparoscopy and possible chemotherapy, and then a full operation to remove either the top half of my stomach or all of it, followed by more chemo and/or radiotherapy.  I asked what that would mean for me, and they say I will forever have to eat little and often for the rest of my life and I am trying to be positive  and think of it as a free NHS gastric band! I am aiming to be a size 10 after this!  

I am mainly ok but having moments of sheer terror! At this stage I don't know how much longer all of this will take - and I like to know about all the bolts and whistles. I feel out of control, and I am in a huge flare up of arthritis in my collar bone & clavicle (I also have fibromyalgia), and despite having x2 physio sessions it is not improving.  I think stress is not helping with this, neither is heat treatment of lying down.  

I'm sorry to be a whinger, but my head doesn't feel like it's mine.   I have my husband and son (adult) at home who are great, but really don't know what's to come.  My Mum is in a state of terror about me (she is 84 and lives about an hour away and no longer drives up here anymore).  She told me she wished it was her and not me who has cancer as she has had her life! Needless to say I had to tell her off.  We have 4 grandchildren (aged 6-14), and I have a good handful of very close friends who are supporting me too, one has had cancer, and one who is an ex-nurse.  But I don't like to have just every conversation about me and my 'offender'.

It would be great to hear from anyone in this group who might feel the same way.  Good luck to you all xxx

  • Hi  and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

    I'm sorry to read that you've recently been diagnosed with cancer and I know how difficult waiting for treatment can be. 

    The online community is divided into different support forums and, I'm assuming from what you've said, that you've been diagnosed with stomach cancer. If this is correct I'd recommend that you join the stomach cancer forum as you'll then connect directly with others who have this type of cancer to ask questions, share experiences and get support.

    If I'm wrong then please either let me know what type of cancer you have, and I can then give you a direct link to the forum, or you could look through this list to choose the appropriate one.

    To join, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

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