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Re: Home Time [Re: Pam42] #199187
10-05-2019 02:24 AM
10-05-2019 02:24 AM
Joined: Jun 2019
Posts: 76
D
Dizz_zzey Offline OP
"OCF across the pond"
Dizz_zzey  Offline OP
"OCF across the pond"
Supporting Member (50+ posts)
D

Joined: Jun 2019
Posts: 76
Hey Pam,

In the UK, it's common practice for the National Health Service (NHS) to set up speech and language therapy team, dietician, physiotherapy etc for cancer patients (depending on their type of cancer and wat their needs are). We're very lucky. The clinical trial team add extra blood tests and scans if my health declines, and I'm more likely to be admitted should anything not look as good as they want it to be.

I Googled 'Tongue Twisters' to help with my speech. I said them out loud. I also said the alphabet and then I would name all the things in the room I'm in. I still do this every so often just to keep my speech up. I also try to sing to songs. It's terrible and a lot harder than I'd like, but it's also fun.

My radiotherapy team prescribed me this cream Super Defense Cream. It's amazing! It's really eased my sore neck and face. They said to keep it in the fridge as it cools the aloe vera in there which works better to cool the skin. My hands and nails are in great condition since using it as I massage the excess into them smile

They did cut my abdomen. They did a radical free flap reconstruction (RFFR) after removing most of my tongue. This where they take muscle and blood vessels from my left arm to replace my tongue. It's sewn onto the remaining sliver of tongue, into the floor of my mouth and into my left cheek. They then took some flesh from my abdomen to fill the hole they left on my arm. My abdomen was then glued closed, but unfortunately I split part of the wound.

I can feel that I am starting to need to rest more, which is frustrating. I may be a larger lady (altough 30kg smaller than before) but I am active. I carry a collapsable walking stick with me in case I need to slow down/rest when I'm out.

Of course I'll keep you update, it's my pleasure to do so. I love our community/family here. Please keep us updated with Scott's progress. Also look after yourself too.

Have a fab day smile


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses Rads due 17th September '19
3 doses cispltin due 16th Sept '19
Re: Home Time [Re: Barry Toronto] #199188
10-05-2019 02:27 AM
10-05-2019 02:27 AM
Joined: Jun 2019
Posts: 76
D
Dizz_zzey Offline OP
"OCF across the pond"
Dizz_zzey  Offline OP
"OCF across the pond"
Supporting Member (50+ posts)
D

Joined: Jun 2019
Posts: 76
Hey Barry,

Yup I've had ringing in my ears a week after having my first dose of cisplatin. It's slowly fading away, but I have a 25 decibel hearing loss from the top end of pitch.
I have an audiology appointment booked for 2 weeks after my second dose of cisplatin.

How's your ringing now? Any heaing loss?


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses Rads due 17th September '19
3 doses cispltin due 16th Sept '19
Re: Home Time [Re: Dizz_zzey] #199190
10-05-2019 07:28 AM
10-05-2019 07:28 AM
Joined: Oct 2012
Posts: 1,134
Toronto, Canada
G
gmcraft Offline
Assistant Admin
gmcraft  Offline
Assistant Admin
Patient Advocate (1000+ posts)
G

Joined: Oct 2012
Posts: 1,134
Toronto, Canada
Dizzy,

What wonderful ideas to help with speech—tongue twisters, saying the alphabet and singing. I must keep that in mind for members who may need speech support on the future.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Re: Home Time [Re: Dizz_zzey] #199192
10-05-2019 07:52 AM
10-05-2019 07:52 AM
Joined: Jun 2013
Posts: 345
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 345
alabama
Singing slays me. I never noticed how many hymns had the letter 'S' till after this cancer ... and no matter how well I can say certain letters, that does NOT translate into being able to sing them, LOL. You're right to try singing as a therapy! It's a whole different skill. For the sake of the congregation, I practice in the car instead. laugh

And yes, the fatigue! Though in my case I think it's because my thyroid got fried. Oh well.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Home Time [Re: gmcraft] #199195
10-05-2019 03:34 PM
10-05-2019 03:34 PM
Joined: Jun 2019
Posts: 76
D
Dizz_zzey Offline OP
"OCF across the pond"
Dizz_zzey  Offline OP
"OCF across the pond"
Supporting Member (50+ posts)
D

Joined: Jun 2019
Posts: 76
Hey gmcraft,

Please share. My speech therapist loves how I've progressed and is recommending all 3 to future patients.


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses Rads due 17th September '19
3 doses cispltin due 16th Sept '19
Re: Home Time [Re: KristenS] #199196
10-05-2019 03:41 PM
10-05-2019 03:41 PM
Joined: Jun 2019
Posts: 76
D
Dizz_zzey Offline OP
"OCF across the pond"
Dizz_zzey  Offline OP
"OCF across the pond"
Supporting Member (50+ posts)
D

Joined: Jun 2019
Posts: 76

Singing slays me too, but I keep going. I can't pronounce D's and G's and it seems that all of my favourite songs have plenty of D's and G's in them. I follow a German group and used to be able to singalong in German. Not anymore at the moment laugh I'll keep practising, only when no-one is around.

I've had an underactive thyroid for 24 years, plus I was a manager in a supermaket doing ridiculous shifts, so I thought I would be used to the fatigue. Nope. Not at all. When I come out of hospital on Tuesday I'm taking a cab all the way home as I would have had 2 doses of rads, 1 chemo and 1 immunotherapy on top of a terrible nights sleep. There is no way I will be able to use public transport as I just don't think I'll be alert enough.


F 39 x-smoker, rare drink
T4aN1/N2bM0 SCC L lateral tongue &10mm into R
Diagnosed May 20th '19
Pembro trial 5th July '19 2 doses pre-surg 15 post surg
R.I.G fitted 9th Aug '19
Surgery 13th Aug '19 subtotal glossectomy neck dissection RFFR
33 doses Rads due 17th September '19
3 doses cispltin due 16th Sept '19
Re: Home Time [Re: Dizz_zzey] #199199
10-05-2019 09:14 PM
10-05-2019 09:14 PM
Joined: Jun 2013
Posts: 345
alabama
K
KristenS Offline
Platinum Member (300+ posts)
KristenS  Offline
Platinum Member (300+ posts)
K

Joined: Jun 2013
Posts: 345
alabama
Good heavens, no, get a cab. Or better yet a limo. With a chauffeur who looks like Tom Branson in Downton Abbey. laugh (The movie's out here, and it's lovely!) You deserve a really nice restful ride.

((hugs))

There are groups here, so I am told, that offer to coordinate rides for patients who need treatment and get to the point where they can't drive themselves. Is there something similar where you are? Would your hospital be able to put you in touch with such a group? It's meant to be charitable, a relief / help group ... usually friends or family of survivors who kind of get what you're going through and want to pay it forward from what help they received back when it was their turn. Might be worth asking?

Don't over-push yourself ... it always comes back to haunt you later. Stay strong, but don't USE all the strong! (If that makes sense.)

You can sing German? Wow. I've got a friend who would be a fan. Me, I can fake-follow-along on some Christmas carols, some of the French or Latin ones, but that's it ... German is beyond me. Though I had fun terrorizing my middle-school Sunday School class who were fussing about different Bible translations by bringing them in the old Anglo-Saxon passages and letting them take a look at THAT ... hehehe ... suddenly stuffy old King James didn't seem that rough anymore, and the NRSV and NIV were positively simplistic. It was a blast. (I took a semester of Anglo-Saxon in college for an elective English credit; loved every minute of it. Yes, I am weird. Been handy, though.)

Do you play an instrument?
(Yes, I'm ADD-hopping back to music.)


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Re: Home Time [Re: KristenS] #199222
10-09-2019 08:50 AM
10-09-2019 08:50 AM
Joined: Jun 2007
Posts: 10,384
PA
C
ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
C

Joined: Jun 2007
Posts: 10,384
PA
Im coming into this a bit late, Im not sure who asked about transportation? Different facilities may offer some alternatives for patients who need help getting to and from their treatments. Im fairly certain in the US Hope Lodge has a shuttle for their visitors. For OCFs members who are outside of the US, there could be things available to patients in your area. Unfortunately many of these types of things arent offered until after the fact. I suggest asking both doctors and nurses at your treatment facility. Always remember... If you dont ask, you dont get!!!

The American Cancer Society (ACS) runs a volunteer driver program. I used it myself back in 2007. When I was diagnosed with OC, I had no idea about what it meant to have cancer or go thru cancer treatments. I had known anyone who had cancer. Calling ACS was a surprisingly enlightening phone call. I was not expecting to have any volunteers that would driving me the hour and half round trip to my treatment facility. Back then we lived pretty far out in the country so it was quite a hike for a volunteer driver to get to my area. At first, I felt guilty using the service when I had my 17 year old son to drive me. I worried by using the driver program it would take a ride away from someone else. Then I felt guilty about depending so much on my son who to me was still a kid. Looks like Im quite a worrier, huh! After I recovered from my first round of OC, I applied and became a volunteer driver myself. It was a great experience helping others get to their appointments. Some patients talked, others werent feeling up to it which was ok too. Right away I found by helping others, it also helped me. I was able to come to terms with everything I had been thru and get a better grip on always feeling guilty. The ACS has other helpful programs that will help cover transportation costs and/or pay for out of pocket prescriptions. Anyone in the US who has been diagnosed with cancer should call ACS (they open 24/7) and inquire about whatever they could used some help with.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Re: Home Time [Re: Dizz_zzey] #199241
10-12-2019 09:13 PM
10-12-2019 09:13 PM
Joined: Jul 2019
Posts: 29
P
Pam42 Offline
Contributing Member (25+ posts)
Pam42  Offline
Contributing Member (25+ posts)
P

Joined: Jul 2019
Posts: 29
Hi Dizz,

I hope you're still doing well.

The tongue twisters thing is a great idea. I plan to look into it when he feels more up to it. Only one more week to go....

Ohhh, Ok. I see. They did the same thing with him except they used skin/tissue from his thigh instead of his abdomen. I didn't even think of that... smirk I knew you guys had a lot of the same things done during your surgeries so I kept thinking why would they have cut her there??. Duh... Don't know why that never even occurred to me.

Well, after the week is through, I'm not sure what the next steps will be. His burns on his neck are pretty red and he is having a lot of mucus/saliva but at least there haven't been any setbacks so once this week is done, hopefully we can begin working on getting close to a full recovery. I'm going to try to get in touch with his surgeon and find out when his next appointment will be, next steps, etc... I know he is just focused on getting through this radiation/chemo right now but I would like to at least have an idea of what to expect.

I hope you've still been able to get out and about as you like. Best wishes!

Pam


Significant Other diagnosed in May: SCC Right Lateral Tongue. Surgery July 30, 2019: Subtotal Glossectomy. Removal of tissue from jaw and small part of jaw bone, All lower teeth and lymph nodes, on the right side. Reconstruction using tissue and bone from forearm and tissue from thigh.
Former smoker: 30 years and family h/o Cancer
Plans to remove more teeth before radiation begins.
Radiation began 9/6/19 and chemo 9/11/19.

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