I was diagnosed with a G.I.S.T in May 2015 and had surgery in 2016. I had my stomach removed, part of my pancreas and part of my diaphragm. The surgery was successful and it took me 18 months to recover from. When I say recover, I mean learn to live with the chronic pain and side effects. I lost a job I loved. At the start of 2018. I picked myself up and got a part time job just 8 hrs a week and resumed my social life and began to live life again. 6 months later in July 2018, I was diagnosed with a 2nd G.I.S.T and in January 2019 I had a second surgery and had part of my bowel removed, part of my left lung and more of my diagphram removed which and had to have a piece of mesh inserted to hold what was left of the diaphragm together. The surgery was again successful but has left me with more pain and additional side effects.
I have recovered well, but I am struggling to move on with my life as the last time I did this, everything fell apart again months later. I feel I would be well equipped to deal with another diagnosis and am resigned to the fact that this is likely and will kill me one day but what I can't cope with is starting to re build what's left of my life and have it ripped out from under me again.
I usually have a couple of weeks where I feel really motivated and positive about life followed by a couple of weeks where I lose all motivation, lack energy and randomly burst into tears and am overwhelmed by sadness and despair. Obviously all the side effects and medication post surgery may be also be impacting on this.
Can anybody offer any help and advice on how to deal with this. Don't really want to go down the medication route as I take enough of these already.
Cazza 169
Hi and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear the journey you have been on.
A cancer diagnosis can bring a lot of stress, confusion and questions but yes, talking with people who are on the same journey can help a lot.
Can I first direct you to this link to our Stomach cancer group as this will open up your concerns to a wider audience who know exactly what you are going through at the moment.
Just follow the link above, hitting ‘Join the Group’ tab just under the main group name, then go to the 'Start a Discussion' tab and set up your own Discussion and introduce yourself to the group - you could just copy an paste what you have in this first post.
We also have lots of support groups that are Cancer experience groups, again places to come t with folks.
You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.
Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support in your area or a Maggie’s Centre as these folks are amazing.
When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.
All the very best.
Hi and a warm welcome to the online community
I didn't have your type of cancer but I can see that you've found and posted in the stomach cancer group. It's always good to talk to others who have been through the same type of experience as yourself and hopefully you'll get responses from others who have had a GIST.
While you're waiting for replies you could use the search facility in that group to look for previous posts where people have discussed their experiences with GISTs.
Another group that you might be interested in joining is the life after cancer group where you can talk to others about the physical and emotional after effects of cancer.
To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself or post a question after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.
Have you spoken to your GP about how you feel? I know you say you don't want to be given any further medication but they may be able to refer you to some form of counselling.
You could also look for support groups that are local to you in the 'In Your Area' part of Macmillan's website.
When you feel up to it, it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
x
"Never regret a day in your life, good days give you happiness, bad days give you experience"
((hugs)) do check to see if you have a Maggie’s Centre in your area as these folks are amazing.
Up with us in Inverness folks will do a 3-4hr round trip just to talk with their support team and for some, attend one of the many support groups.
((hugs)) again.
Hi again . Yes, we do have one in Inverness where I stay but as a very high percentage of the Highland population have to travel to Inverness for most of their treatments.
You can get one on one appointments with the Maggie’s Phycologist - I have had some great help over the years.
((hugs))
