| Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Hi:) This time (surgery in 2 weeks) I guess I'm going to have my right arm in a splint for the free forearm flap. I remember writing up a storm last time when my flap was from the left arm. That's not going to be possible this time. What's the best way to communicate if left-handed writing doesn't come easily? My smartphone is pretty easy to operate with my left hand but being of the older generation I'm not a natural on the tiny keyboard. I can write laboriously on a whiteboard with my left hand. How do people manage?
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | 1) I have a full size keyboard that I use wirelessly with my iPhone and works great. Maybe you could try that.
2) During treatment, my son and I used our own form of sign language, thumbs up or down for yes/no, shrug shoulders for I don't know, and I tried to ask yes/no questions or give him 1, 2, 3, choices so he could hold up the right number of fingers. Amazing what you can develop on your own.
3) I think there are speak apps available to convert speak to text.
4) Hospitals sometimes will hand you some of the most common questions / answers on a card that you can point to in order to communicate with others. Or you can make your own to use. If you feel like using a naughty word, you can put that on there, too! They also have a card that has several "happy faces" going from really angry on to very happy so you can tell them how bad the pain is (if you have pain).
BTW - Left hand writing that doesn't come easily is actually beneficial to the brain (keeps it young) which has to make new learning tracks. When I had problem with carpel tunnel in my right wrist I had to do stuff with my left hand which was awkward at first but I find I now still prefer to do one or two of the things with my left hand in preference to my right hand. Being from the "older generation" is not a reason for learning new stuff, and I'm a lot older than you. You may even be surprised at how well you can manage.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Dec 2013 Posts: 32 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Dec 2013 Posts: 32 | There are lots of text to speech apps available. I used "Speak It!" on my iPhone while in the hospital and it worked well for me. You can store phrases to avoid retyping common statements all the time.
At home I am using a Fisher-Price magnet drawing board to save on paper. It is less messy than a whiteboard and you don't have to worry about the markers running dry.
Best of luck to you on your surgery!
Roger
Male, non-smoker, very light drinker, age 56 at diag. 9/18/12 - Diag. tongue cancer, left lateral border HPV 16+ 9/24/12 - Partial glossectomy w/recon. Left side neck nodes removed 11/7/12 - Begin rads (30 treat.) and Cituximab (11 treat.) 12/26/12 - Rads compl. 1/18/13 - Cituximab compl. 3/13/13 - PET clear 12/19/13 - Positive PET 1/3/14 - Biopsy confirm cancer in tongue and 1 node (stage 4) 1/16/14 - Surgery - full glossectomy and and right neck dissect
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Kris initially used a whiteboard, but very quickly moved on to use Speak it on the iPad. This is a free app available from the app store on your smart phone. You could try practicing with it now so that you are used to it by the time your surgery comes around. I'm sure the ward will have some aids to help as Anne-Marie suggests. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | OP "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Wow, some great advice there. I'll definitely check out the apps for the phone and have a look at my grandson's magnetic drawing board.
Tammy, if you're still out there, a question: does Auckland Hospital have wifi? I don't need it for the above but could be handy for other things.
Thank you, all.
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | They beat me to the advice so im just going to say good luck!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | Hi Maureen, no Auckland Hospital does not provide wifi. I especially bought the IPad with wifi plus 3G. So it has a card in it like your smartphone does and I buy internet use. 3G per month, when we need it. If you intend to just use your smartphone perhaps you could update your data plan for the month that you will need it. So you will use your data plan to download while you are in hospital. I'm sure either Vodafone or Telecome will assist you. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Roger and others, a lot of very good ideas here. I guess I should also make note of them in case the need arises at some point in 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. | | |
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