Delayed struggling / confused?

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I'm in my early 30's.  I was diagnosed with a tumour (GIST, a rare cancer), and had major abdominal surgery to remove it in early April.  Has been a tough for few months but everything all clear.  Post surgery complications (diet, vomiting) lasted over a month.  All good now.  Full recovery from surgery will take a while yet, can't exercise/gym which is a blow.
I was told all along it was benign, however, after seeing a sarcoma specialist last week, GIST's are never really benign, can be low or high risk, I am a lucky one and chance of returning is 1 in 20.
The whole diagnosis followed me being made redundant and being out of work (I know have a temporary job sorted for the next 4-5 months).  So it was only until last week the penny dropped, what I had was effectively the C word.

During this period, people I thought were my friends have largely ignored me, many aware I had surgery/was in hospital for a while... some know about my redundancy and tumour/surgery...I just cant make sense of it all and wanted to hear of others experiences?
PS I will hopefully be doing some counselling sessions via BUPA/Macmillan - day to day I am coping OK but last week was a slight shock (reality that I have/had survived cancer, small chance of reoccurrence), and I can't make sense why people you label as friends are selfish/stuck in their own world so much?

  • Hi  I see it’s your first post so a very warm welcome to the Community but sorry to hear about your diagnosis.

    Navigating the cancer journey can be such a stressful and challenging time but getting support from people who have walked the ‘exact same' cancer journey can help a lot. (I have a completely different cancer).

    The Community is actually divided into dedicated Cancer Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Stomach Cancer support group. This will be a safe place to talk to others with a similar diagnosis, treatment experience, to ask questions and get support.

    To connect in with the group please click on the link belowPoint down

           Stomach cancer

    …… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.

    When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [ + ] in the top right of the group page.

    You can copy and paste the text from this post into your new post.

    Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and give support to all the family.

    Do get back to me if you need further help navigating the community.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

  • Hi. Sorry to hear about your diagnosis and how people are treating you. I think that people, on the whole, are embarrassed and don't know what to say. My husband had a radical cystectomy recently and we decided to only tell our immediate family. When my father died in 2015, I found people would cross the street rather than talk to me. Eventually, they got over their embarrassment. 

  • Why would they be embarassed???

  • A lot of people can't cope with illness. They don't know what to say to the person going through the illness. It's human nature. 

  • Hi.  That was so interesting hearing your story.  I had a GIST in 2020.  Surgeon totally played it down. Told me to look on the bright side and that I was fine. He said I didn’t need future scans.  I found out, like you, last year it had been cancer. .  I pushed for scans and have just found out a new tumour has appeared on my liver. Now waiting for treatment plan.  Exactly as you say. Because it is a rare cancer everyone seems to play it down and not accept it.  I have felt very lonely.  Like I was making a fuss. And I felt very confused with the surgeons lack of interest. But now look what’s happened.  It has come back.  So don’t feel alone.  Push yourself forward if you feel you want yearly scans. My risk was low/intermediate and it has come back.  I wish you all the best. 

  • Sorry to hear of your reoccurence. I hope all goes well in terms of trearment plan etc.  Also remember you are never alone.