Good morning everyone!
I have just found your forum and am desperate to share what's been going on for me, so I hope you'll forgive me if I splurge! But first, I'll share a bit about myself. I'm 73 and have a long and loving marriage (54 years!). I have two grown up children - one who lives locally and one who lives at the other end of the country! I have three granddaughters and two grandsons ranging in age from 9 - 19. The families are both busy, busy, busy - just as I was when my kids were young.
Recently I fell and had a CT scan which picked up an abnormality between my Pancreas and Duodenum. Yesterday, I had a gastroscopy and it was confirmed that I have a gastro intestinal stromal tumour (G.I.S.T.). More tests are to follow to see how deep the tumour has gone etc.and any treatment, or non-treatment will be discussed at a later stage. My next step is to have an endoscopic ultrasound - no date yet.
So far, no one at the hospital has mentioned the word 'cancer' but, having looked up GIST I see it is a soft tissue sarcoma and outcomes can vary according to whether or not it has spread.
I have been told that a Macmillan nurse will contact me within two weeks and that she will now coordinate my appointments etc and will be there to discuss what is happening to me.
Now this is great - but I need to get some things off my chest right now!
Firstly, I have a loving husband who clearly has no understanding of what is going on and how it may be making me feel. He blots out medical information like I blot out what he tells me about his classic cars! Yesterday at 6.00 pm we were in discussion about the gastroscopy results at the hospital and this morning he is helping to set up a field for a three day car event.
I have a daughter who is staying in London yesterday and today with my three granddaughters who are all 'Swifties' and two of whom will be at the big Taylor Swift concert in Wembley tonight. It's no good trying to talk to my daughter today as the excitement levels with the girls are far to high with the girls for her to take any notice of what I'm saying. My son is working. I can speak to him later, but need to get my ducks in a row first.
I don't know which way is up! I am on a see-saw of emotions thinking, 'The tumour has been measured at 1.6mm so far so it may be kept under surveillance.' to, 'The cancer may have spread and the depth may be greater when measured by the ultrasound endoscopy and I could be in for a lot of unpleasant procedures and treatment, depending where it has ended up!'
I am concerned because the CT scan also identified a lung nodule. I had one picked up three years ago which was under the size threshold for surveillance. If it is the same nodule, it has grown. I have one in the other lung that my respiratory consultant isn't worried about, but he is concerned about this one and wants me back at the beginning of October to see what's what!
I have polyps being removed from my colon in two weeks time and they will also be tested for cancer.
I've had blood tests relating to cancer but don't get the results until Sept 5th (coincidentally, the day of my next colonoscopy). I only know they're relating to cancer because I read the name of the test on the blood test form and it tells me what the test means on Patient Access.
And STILL, no one medically involved has actually come out and used the word 'Cancer'!
I'm sorry to have dumped all this here, but believe me when I say that just writing it down has already helped.
I welcome any replies, but even just knowing other people are out there is a great support.
I have chronic respiratory conditions and so also post on the asthma + lung forum, but don't think this is appropriate to post there.
Thank you, if you have taken the time to read this.
xx Moy
Hi Moy and a very warm welcome to the Community but I am sorry to hear about your G.I.S.T diagnosis.
Navigating a 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 you a lot. (I have a completely different cancer).
This New to Community area is like our reception desk where we look to try and direct you to the best part of the Community for you to get support. The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend that you join and put up a post in our dedicated Soft Tissue Sarcomas support group.
This is 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 below…….
……. and when the group page opens you will see a [Black - Click to Join - Banner] at the bottom of the page, click in this box and this will then confirm that you have joined the group.
You can then introduce yourself to the group 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.
The Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support or just a listening ear.
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.
Hi….. assuming you are using a phone….. if you copy the text from this post (hold a finger anywhere on the text, extended the copy borders then hit copy)
Open the STS group, then hold your finder anywhere on the main area where you want to post (not the title)…... the post function will appear.
Give it a go…… if you are still having problems I can get the Macmillan Cimmunity Staff to do it for you.
I will do that for you 
Good morning, Moy. My name is Dylan and I work in the Online Community team.
I have just copied and pasted your post into the Soft tissue sarcomas forum. I hope you find the forum helpful.
You can find the post by clicking here.
If you have any questions or need help with the site, please feel free to get in touch with us on community@macmillan.org.uk.
Best wishes,
Dylan
Macmillan's Online Community Team
