My last post was pretty dismal looking back on it and I wish I had some sort of update from that point but nothing has changed since then.
Things are much better though! Eventhough we don't really know what's going on and we're not certain whether my dad is cured or not still, things have definitely calmed down, his voice is back properly so is his taste and he's returning to normal gradually, I don't know what the future holds exactly but I'm grateful for what I've got right now.
I hope you have all been well and looking after yourselves too! I'm sorry I didn't update sooner but as mentioned before we haven't really got an update ourselves.
As far as I know they did biopsies on my dad before his operation to remove the rest of the masses and all the biopsies came back as inactive, then they did the operation and removed the masses and they found active cancer cells in the operation tissue. So then they informed us that he could still have active cells in his neck and basically told us to expect the worst. Then they did more biopsies and they haven't found anymore active tissue but they can't give us a solid answer, in short I'm CONFUSED LOL.
Regardless there's nothing more that can be done now and I'll accept the outcome either way, I'm happy with what we have now and we'll burn that bridge when we get to it.
The only problem left is he still has his PEG in, it's been over a year now it's been in there, is there any advice you team could lend about organising to get it taken out, because if covid and things I'll imagine it'll be difficult.
Hello Acornette, so lovely to hear from you and like you pleased how your dad is, maybe someone made a mistake last time or got a false reading, it is confusing but long may it last. If he has the balloon-type in it can be removed at home but if it's a more permanent one then he would have to go into hospital. Of course, this should not be removed until his consultant has agreed or maybe his dietician. If it has to be removed in hospital i would wait until this coronavirus has died down, unless it's causing concern. I'm having my tube changed next Wednesday by my Abbott nurse as i had Ensures Compact I'm not sure what food supplement your dad was on. This has brightened my evening up no end reading this update, many thanks. All i can say is all the best for the future to you and your Dad, i bet he is confused as well but relieved. Take care .
Chris xx
Its sometimes not easy but its worth it !
Hi Acornette. Absolutely wonderful to hear from you. We all hugged and cried with you on your journey with you Dad and crossed fingers at every turn in his treatment. I am so glad to hear that he is well in himself. He is lucky to have such a caring thoughtful daughter, bless you.
That's the rotten thing about this disease, even the doctors can't predict accurately how things will turn out. Theirs is an educated experienced guess after all. But I was told the longer you survive the lower the chance of recurrence and that most recurrence .....statistically (yes stats ARE useful sometimes) is in the first year.
I'm sorry I don't know about PEGS but Chris is the expert and has said it all .
Wishing you all the best in the future
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
