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Delly #188911 03-28-2015 03:36 AM
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You're doing a great job Delly, and so is your Dad.

A tablet (not the swallowing kind) is a great way to pass the time when you're stuck in bed.


Cheers, Dave (OzMojo)
19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil.
31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014)
11August2014 PET/CT clear.
17July2019 5 years NED.
Delly #188912 03-28-2015 06:06 AM
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Thankyou everyone x he makes me proud every day achieving new things had a sip of cup of tea today and throws it back and swallows I'm hoping the radiation doesn't damage anything where he can't swallow afterwards because I feel he can do that and is determined to get back to work x I really hope so xx


Father 60 years old
Diagnoised oc jan 15
Peg fitted 27/2/15
Full tongue glossectomy reconstruc surge ,
Lymph nodes and glands out 5/3/15
Rt 14/5/2015

Delly #188915 03-28-2015 01:00 PM
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Hi Delly
Sorry missed your posts. I only had the NG tube for 9 weeks , eating and drinking normally now ... Well the new normal! Bottle of water to help swallow , and getting on with the altered taste or lack of it! Some foods easier than others and some still sting like crazy !
Your dad seems to doing well , great stuff with the sip of tea we love our brews us English folk! Lol
My tongues been pretty sore since the little op on Monday just the waiting now get the results a week on Friday .
The next support group is on Tuesday 7 th April at Macclesfield hospital 6.30 / 8.00 in the cancer resource centre. Maybe early days for your dad but carers are always welcome. We meet every 6 weeks so whenever anyone feels up to it all welcome.
They're fab at Christies will really look after him , sorry your having to go through this , we're all here for you both
Di x😄


Di 47 none smoker / drinker

T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
Delly #188921 03-29-2015 05:45 AM
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Posts: 71
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Hi di66 glad to here you are feeling better and yes we do love our brews smile I'm hoping one day he can have one with us x glad your able to eat as well bet it feels strange x I don't think dad will be able to swallow food if I'm honest x how was your radiation how many blasts did you have dad goes every day but not say sun for 6 week 30 blasts x how did you cope did you have a very dry mouth is this why you swallow water with your food will it be always like that xx


Father 60 years old
Diagnoised oc jan 15
Peg fitted 27/2/15
Full tongue glossectomy reconstruc surge ,
Lymph nodes and glands out 5/3/15
Rt 14/5/2015

Delly #188923 03-29-2015 07:07 AM
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Posts: 79
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Hi Delly ,
I had 30 fractions of rads and 2 scheduled chemos but only managed 1, my platelets hadn't recovered enough for the 2nd lot . The radiotherapy is stuff and I did struggle but not to do isn't an option so it was a case of just getting on with it. My neck became very sore I trialled a cream but I can think for the life of me what the hell it's called but it will come back to me! Was told is �85 for a very small tube but they gave me several tubes whenever I asked. My skin still broke down and was very wet and oozing sore but it's healed beautifully and you would never know . Your dad will be very tired I'm still tired and can't manage full time work anymore , yes I too went daily for 6 weeks with sat/sun off. Are you able to go with your dad , I couldn't have done it alone and I couldn't drive. I had radiation sickness but believe this is not that common most people don't. The dry mouth is miserable I'm on a drug called pilocarpine which I find really good wouldn't be without it but again most people can't tolerate the side effects I personally find them worth it . Nobody at christies told me about it , I learnt on here so asked about it and they gave it no problem , so worth a go. They also gave me acupuncture which I had for 3 months after the treatment I wasn't well enough during.
Horrible wet miserable day here roll on summer eh?
Take care ask away if there's anthing I can do or help with xxxx


Di 47 none smoker / drinker

T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
Delly #188924 03-29-2015 07:07 AM
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Posts: 79
"OCF across the pond"
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Tough not stuff!


Di 47 none smoker / drinker

T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
Delly #188933 03-30-2015 03:24 AM
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Posts: 71
Delly Offline OP
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Have you recovered fully from radiation and how long after treatment finished did you start to feel better xx dad just wants it all done then we can start in speech therapy and swallowing hopefully x


Father 60 years old
Diagnoised oc jan 15
Peg fitted 27/2/15
Full tongue glossectomy reconstruc surge ,
Lymph nodes and glands out 5/3/15
Rt 14/5/2015

Delly #188943 03-30-2015 01:38 PM
Joined: Mar 2015
Posts: 71
Delly Offline OP
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Hi di66 I'm very interested in the support group next Tuesday x I'm not sure my dad will come yet but I think I want to attend , are there people there with similar to my dad who can't talk , are they all at different stages , dad having very down day today which also makes me down it seems to be however he is feeling I do to xx


Father 60 years old
Diagnoised oc jan 15
Peg fitted 27/2/15
Full tongue glossectomy reconstruc surge ,
Lymph nodes and glands out 5/3/15
Rt 14/5/2015

Delly #188961 03-31-2015 12:10 PM
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Posts: 79
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Hi Delly , people there have a variety of head and neck cancers , all at different stages in their recovery they're a great bunch , I'm the youngest was 47 at diagnosis some have been meeting up for 14 years I think. It's ran by 2 women ones a dietician the other a speech therapist and they have loads of advice. Guest speakers come head and neck specialist nurses , dentist , benefit advisors this next one is a speaker from Wiltshire farm foods ... Could be crap but hopefully not! Lol
I understand about how your dad feeling dictates your mood and feelings , it's like that for my mike , if I'm managing being positive and looking forward he is to , if I'm having a bad day he tends to also but we try very hard to bring the other round if it's a down day.
The long term effects of radiotherapy I'm still dealing with but the short term ones I would say I started to really begin my recovery after about 6 months so for most of us there aren't any quick fixes but everyone is different a few have sailed through it.
If you fancy a chat private message me and I will send you my phone number.
Your doing a great job xxxx


Di 47 none smoker / drinker

T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
Delly #189094 04-09-2015 11:37 AM
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Posts: 79
"OCF across the pond"
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Hi Delly
Was just wondering how you and your dad are doing ?
Thinking of you both x


Di 47 none smoker / drinker

T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
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