Anyone out there living with Upper GI cancer? I am and I'm wondering if there is anyone who may be interested in attending a get together at Flinders Medical Centre end of April 2021. Doesn't matter where you are receiving treatment as all of our Oncologists share information.
Always here to chat whenever you want or need. I live on the West Coast of SA so know what you mean about not being able to attend support groups. We were living in Coffs Harbour when I was diagnosed, if you are there they have a great bunch of people at the cancer clinic.
I have terminal Stage IV Upper GI, 2 years on & still plodding along. It's a tough road but there up heaps of us out there. I've also joined a Face Book group - The Esophageal Cancer Patient and Caregiver Support Group, lots of people on there treading the same path as us.
Thank you for replying. Coffs Harbour is two and a half hours north of me so too far for me to drive.
I was diagnosed in December 2016 with upper third SCC in situ. I had radiotherapy and chemotherapy as it was inoperable. I spent 7 weeks in hospital with nasogastric tube feeds. Pretty ghastly. I was okay for three years apart from a stricture caused by the radiation. A year ago it came back in the lower third. Have been having ablations and dilatations every two months in Sydney ever since. What a trial.
I hope you are okay at present.
This cancer does suck hey. I guess all cancers do tho. I'm not happy at the moment, I've been doing pretty well and haven't had chemo since August last year waiting for trials to start and in the mean time my tumours have been growing. I finally get the call to come in & sign up but wouldn't you know it - CT showed a lymph node in my neck has squashed my jugular vein and caused a blood clot. Not eligible for the trial and I have to self inject a blood thinner twice a day for 3 months. I cannot express how much I dislike injections now I have to give them to myself. I have had severe abdominal pain for over a month & they can't tell me why plus I still can't eat following the latest round of radiotherapy. Chemo starts again next week.
And that is the end of my whinge session. On the bright side, I will save money on hairdressers (my hair has finally grown long enough to cut again) & I won't have to shave my legs again.
I'm sorry I didn't cheer you up - I hope you are having a better time today.
Oh dear Carmel that sounds awful. Especially since you don’t like needles. I had to self inject Clexane a few years back but it didn’t bother me. I was a nurse for 45 years so I was used to needles.
What a shame about the trials. Did you have adeno carcinoma ? and an operation ?
My hair fell out but I haven’t had anymore chemotherapy or radiation.
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