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As well as sharing experiences with our friendly online community, registered members are able to contact our experienced online team. The Centre is staffed during office hours and the online team aim to reply within 24 hours.

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'Today I am feeling' - managing emotions

Share how you are feeling and swap tips for managing stress with other members and the online team

  • 163 conversations

hi im new here

Started by Anonymous on 06 September 2017 at 13:13

Hi there 

i was told about this site by my girlfriend and i just wanted to tell my story and get some advice really. i might babble on a bit....

i am 38years old from london.i was diagnoised with GIST cancer in april 2015 it is a rare cancer and is in the sarcoma family. It started in the bowel and the tumour in my bowel was removed in april 2015. When it was removed it was found i have liver mets and started a treatment called glivec with is an oral chemo which is taken once a day.The side affects were not too bad and very manegable.

In march 2016 i was made reduntant due to factory closure  and since then have been out of work and claiming esa.

I moved hospitals to the royal marsden in london late in 2016.i was told there was nothing they can do about the liver mets except keep them under control with the tablets.

After a few months the glivec stopped working and had to be moved onto the next drug witch is called sutent and that is the same oral chemo, but 4 weeks on 2 weeks off the side affects vary from month to month.I could live for years with the drugs and there is always lots of trials going on.

I just feel so alone sometimes as i have not been working and feel like im sitting at home waiting for more bad news. I feel forgotton sometimes by friends and family and i know they dont mean to do it. I would probably moan at them if they were too over powering and worrying anyway, i am a hard man to please :)

i  was going to start a job a few months ago in asda but i  was taken into hospital the day i was meant to start and i just didnt go.I dont like letting people down so dont bother getting a job.I have had a number of volunteer positons lined up but at the last stage of getting the position i just dont bother.I get very anxious about being able to do the job and letting them down if i have to go to a lot of hospital appointments.

I have had previous health problems . I was born with a conditon called hemi facial microsomia which basically means i was born with no right ear and no right jaw bone andmy  face is not "normal" .THis has made me parnoid and anxious over the years but got over it and have always worked in my life doing shop work and anyjob really, but i feel the cancer has just made all these feeling come back.

i think i will leave it there for now. It was nice to put my feellings down  and any advice anyone could give would be welcomed.

sorry for any spelling mistakes but no little red lines came up to tell me i was wrong :)

 

thanks for reading

 

Richard

 

Comments (4)

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Displaying 4 comments

  • From Anonymous
    08 September 2017 at 17:29

    Ty Robyn i have chatted to sue via email


  • From Anonymous
    08 September 2017 at 17:27

    Hi Jim Do you post on the gist uk email group ? I think you do if so it was you inspired me to join Maggies group thank you Richard


  • From Anonymous
    08 September 2017 at 16:23
    Edited on: 08 September 2017 at 16:27

    Hi Richard

    I've just read your piece from the other day. I also have metastatic GIST cancer. I was diagnosed in May 2009 and some eight plus years later I can testify to the benefits of the treatments now available for this relatively rare cancer.

    Mine was discovered in the connecting tissue of my stomach with mets in my liver and a couple of lymph nodes as well. Things were so advanced that any sort of operation was immediately ruled out. Instead I was put on Glivec and all these years later I am still taking the tablets! My primary tumour shrank very quickly and the "spots" on my liver reduced to virtually zero after a few months. Apparently, the specific mutation of my GIST is particularly receptive to Glivec so that probably explains why it has been so successful over a long period. Of course I live with the fear that Glivec may stop working one day, but Sutent has already been mentioned by my consultant as the next treatment.  A third one is also approved for GIST patients (here in Scotland anyway). Apologies, but I can't recall the name of that one just for the moment.

    I just hope that my story might go some way to help alleviate your thoughts of being a bit alone with all of this going on in your life.

    Best wishes

    Jim 


  • Picture of Robyn
    From Robyn  
    07 September 2017 at 08:53

    Hello Richard and welcome to Maggie’s Online Centre,

    It sounds as if you feel in limbo just now following a series of events happening to you over which you have had no control (not to mention the emotional rollercoaster alongside them)

    I guess friends around you find it hard to understand your illness and also to know what to say or do and have drifted away a bit. Other visitors to Maggie’s will I am sure understand how lonely that can feel . I wonder if you are able to visit one of our Centres – you don’t need an appointment you can just drop in. I think you would find it helpful to connect with other visitors in the same situation as well as chat with our professional teams.

    Work is part of who you are, and without it, I guess much of the structure of day to day life is missing, along with the finance to be able to do things that you want to round your symptoms. That can all have a knock on effect on your confidence, mood and energy levels it is understandable that you are finding things tough just now.


    You mention that you are receiving ESA. There may be other benefits and allowances you are entitled to as a result of your diagnosis and the symptoms you are experiencing so worth talking to an advisor. All of our centres have benefits advisors . Tom ( tombenefits) is our benefits advisor here at Maggie’s Online you can contact him via his profile.
    You are also welcome to message Sue (susieq) or me anytime if you would like to talk things over privately.
    Best wishes
    Robyn


Displaying 4 comments


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