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Just an update. Hubby is now sore but happy. Another steppping stone along the way of this journey. The 'alien' projecting from his stomach ( known as the PEG) has gone. Didnt go willingly but was no match for the determined doctor. At least healing of this area can now begin. Another freedom gained. Another step towards reclaiming his own body. Onwards and Upwards
Hi BrandyGirl, great to hear this update, i bet it was good to get the peg removed, everything seems to be heading in the right direction so well done so far, all the best for the rest of your journey. Best wishes, take care.
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Another step forward in his recovery, all the best to you both.
Just out of interest, why didn't it go willingly, I don't know how mine was as I was out at the time.
And all the best with the eating.
I was wondering that myself Ron, mine slid out totally painlessly in seconds and was done by a nurse. I know there are various different types though, maybe some get a bit stuck.
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Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014.
Hi Ron51 & Mike0
Hubby had lots of problems with the PEG from the beginning. Took about six weeks to settle down. We believe a lot was to do with the positioning of it. Due to this he developed a thickened lump above the stoma. The staff also said there was probably granulation inside as well. We never had any problems rotating the tube etc. but they maybe thought it may not come out easily. They arranged a back up of an endoscopy if it didnt come out.
Anyway gas and air and a doctor quite literally yanking it hard and it came out, with a significant amount of bleeding. Pressure pad dressing and home to rest.
Good job he is made of strong stuff!! He has always had good healing so hopefully in a few days it will all be healing nicely.
Thanks for all your good wishes. Looking to the future. The help, advice and support of those on this forum has been immeasurable.
It sounds as if he had a rough time of it
I never had one. The hospital preference was for reactive placement of a Nasogastric tube which is what I ended up with from week three to about 12. I threw it up twice and the second time just took it out myself.
Good luck and fingers crossed his recovery continues apace
Thank you for your kinds words. I have had a look at your blog - quite witty.
We have been asking from end of treatment about scans. They will not undertake a PET scan until at least week 14 due to false positives. They have been at pains to tell us that they dont always do them. We will have to wait and see.
Glad to see that your life is moving forward in the right direction.
Thank you for your kind words
This scan thing is a bit of an anomaly. it varies from health authority to health authority. Swansea never used to do PET scans, stopping at MRI. it’s all a lottery. I have been talking to Hilary about a dental prep that I discovered. It’s likely that it is a real help yet we have to find these things ourselves. Thank heavens for this community
So was this a PEG or one of those balloon things? I only ask as I can't see how my PEG would of come out through the outside. This isn't important but as I don't know how mine came out as I was sedated and know it went in down my throat even though I was well out when it went in as I couldn't open my mouth enough when they first tried so they did it while they did something else under general anesthesia.
Hi BrandyGirl, this is a first for me, I have not heard of this sort of suffering before as they normally just slide out, I know you can get over granulation where it will try and heal over the inside causing skin to form over the top of the disc inside. I had similar where a neck drain was being stubborn so some silly Dr just yanked it so hard I cried tears of pain ( i cannot speak ) so could not scream or shout. So I can imagine what your hubby went through. I'm sure he will be ok after a few days, wishing you and your hubby all the best for the rest of your cancer journey and beyond, take care.
Thank you for your kind thoughts.
Everyone told us in advance that they deflate the sponge that is on the inside of the stomach and it just slides out. We think that either the doctor didn't do this or the other possibility was that the tube always appeared to be on an upward trajectory and if the doctor tried to pull straight out it was the wrong angle.
Anyways end result same - pain and suffering. Hubby's bleeding from site now appears to have stopped (48 hours later) and it appears to be healing normally - fingers crossed no more problems from it.
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