Share your story in our online journal space.
Hi all. This is my first post.
I was diagnosed in early May with soft palate cancer. All was ready to go for 7 weeks radiation and all that was needed was a PET scan to confirm that there was no spread. It was supposed to be just a formality.
Well when the scan results came back, it showed a 'hot mass' in my esophagus which surprised all in the MDT and of course me.
Now I'm back at square one, with an appointment to see an upper GI specialist this Wednesday.
I feel so lost, frightened and isolated. I live with my husband who's pretty much in avoidance right now. The rest of my family live in different states/territories.
Now that I'm between specialists, I'm at a loss to know who I can contact to get more information as I was rendered pretty much speechless when I got the news.
Is anybody in the same boat as me? The treatment for the soft palate cancer has been deferred until it can be confirmed whether or not I have this second cancer and if I do, that will have to be dealt with first and then I'll have to deal with the soft palate cancer.
I've pretty much given up hope.
Hi Angel _B welcome 😊 I'm still recovering from a thyroid cancer operation & remember feeling lost, frightened & isolated when i was first diagnosed. I just wanted to reach out to you Angel and let you know your not alone.
I know hope can be easily lost in such a time of despair. Only last Saturday i just sat on the couch and cried for most of the day. Sending you extra hope & strength.
Wishing you all the very best Angel.
Thanks for your kind words Bowie.
The feeling of isolation appears to be a common theme. However being part of this community makes me feel less lost.
I hope you're on the road to recovery.
I have a really good support system. Covid makes it hard though. Lately, the anxiety is eating me, I feel no one understands me and I just vent at my husband. Logically, I'm grateful to everyone but there's this side of me that is negative, isolated and just trying to get through the day. I got more treatment today so I'm feeling good that another thing is done but again, taking it a day at a time. Im tired and overwhelmed.
I'm sorry you're feeling that way Seilien but I can totally relate.
There's a quote from my favourite TV show 'Six Feet Under' - 'There's just 2 people in the world, there's you and there's everybody else'. That's what this diagnosis feels like, no matter how compassionate and supportive friends, loved ones and the medical professionals are.
I'm booked in for a gastroscopy tomorrow to see what this thing is in my esophagus and am terrified.
Hey sorry to hear what your going through,
I have been diagnosed with HPV on the Linguinal Tonsil I have had PET scan today and second CT scan. I have a Biopsy booked for next week at RPH so really not sure where I am at....I am eager to await the PET scan results. It is scary the waiting and not knowing ...I hope you feel better soon and my thoughts are with you.