| Joined: Jan 2013 Posts: 65 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jan 2013 Posts: 65 | Charles is scheduled for a laryngectomy and bot resection next week. We have been through pre-op including meeting with his speech pathologist. We have ordered an electro larynx. He'll have a feeding tube through his nose.
My brain is in freeze mode from all the stress of work/leave planning, family issues, insurance, etc. I really need assistance with final preparations before we leave on Monday, a week from today.
Thank you!
Wife/caregiver to Charles ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001 Tonsillectomy, RND and six weeks RADS 2/2001 ENT diagnosis from CT scan, SCC in Rt tongue 2/13 25% of tongue removed 2/13 (clear margins) SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014 Surgical biopsy shows cancer in larynx 9/2014 Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014 Recurrences '16 HPV Neg No EGFR Mutations Detected
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Wishing you both all the very best with everything!!!
I would suggest making a list of every person who offered their assistance. Tell them when you need a hand you will contact them. Dont be shy when asking for help. Others really do care and want to help but often they dont know how. Try your best to have someone stay with Charles as much as possible while he is in the hospital. When a patient undergoes a major surgery like this, they need to have an advocate with them 24/7. Even if you call a friend to stay there a few hours while he sleeps to give you a break. Dont forget you need care too, take some time once in a while just for you. If for nothing else to take a well deserved nap or just a walk to clear your head. Its alot for you too so be kind to yourself. Stay on top of Charles's pain meds. Ask the doc for 2 different pain meds so Charles will never have to wait until its time to get relief. He can switch off and on between the 2 meds and never have to suffer in pain until its the 'right' time.
We are in your corner. Please post when you can, best wishes!!!
ChristineSCC 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 | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Lilly,
I'm sorry to hear about the diagnosis and scheduled treatment. Trying to carry this on your back is an enormous load. Don't be reluctant to reach out to all those who can help in anyway. Wish you well. Stay in touch.
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | 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 | Lilyfoo, I strongly suggest you go to www.webwhispers.orgThis site has a wealth of information for the Laryngectomee. I learnt so much from it when Kris had his Laryngectomy. If there is anything I can help you with, please just ask. Make sure you have a whiteboard , or paper and pen, or an IPad for Charles to write on so he can communicate in the postop period. I would also be asking whether Charles is able to have a TEP speaking valve. This valve will enable speech and most prefer this to an Electrolarynx. It will all go well and you will both come through this. 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: 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 | I would check and see if there is some at home assistance you can get as well, I am sure he'll be home at some point having nursing care in place will make it a bit easier for you to go out and have a bit of me time and do some stuff for yourself. Hugs and best of 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: Jan 2013 Posts: 65 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jan 2013 Posts: 65 | Thank you! I am trying to get a general idea of how long Charles will need 24 hour care once he comes home from the hospital. I have a little over six weeks of leave time built up but wonder if I will need longer to go through this with him. I'm sure much will depend on when he can swallow.
Last edited by LilyFoo; 11-05-2014 09:04 AM.
Wife/caregiver to Charles ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001 Tonsillectomy, RND and six weeks RADS 2/2001 ENT diagnosis from CT scan, SCC in Rt tongue 2/13 25% of tongue removed 2/13 (clear margins) SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014 Surgical biopsy shows cancer in larynx 9/2014 Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014 Recurrences '16 HPV Neg No EGFR Mutations Detected
| | | | 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 | I stayed home with Kris for 4 weeks, though he had a total Glossectomy as well as the Laryngectomy. Due to the bilateral radical neck dissection, Kris needed help with dressing as he couldn't lift his arms past shoulder height. I helped him with his meds, nebulising saline to loosen the mucous so he could cough. Showering took some time to master, but this can be done at night when you are home. I probably could have returned to work earlier, but I just wanted to be there for Kris and to be absolutely sure that he would be ok on his own. I worried a lot about how he would contact me/ anyone if he did need help. Of course this was simple. He could still use his phone to text, .he could either text me at work or our neighbours who are home all day. He actually never needed to text either of us for help. They should test his swallow before he leaves hospital. Does he have a PEG. Kris used the PEG and his swallow for the first 4 weeks. One day I was just fed up with crushing/dissolving his meds so gave him a pill to swallow. No problems. Down it went. That was a turning point and from then on Kris has swallowed everything and has never used the PEG again. He was tired for the first 3 - 4 months and used to nap in the afternoons, but Charles can do this while you are at work. I would just take it one day at a time and see how you both go. It is a time of adjustment. You will both get through this. 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: Jan 2013 Posts: 65 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jan 2013 Posts: 65 | Charles surgeon will use a feeding tube inserted through his nose. He wants Charles to start swallowing before leaving the hospital. His surgeon knows him pretty well after working with him for 15 years and thinks he can do it. We aren't cell phone users but I have been thinking about getting one so he could text me from his iPad in case of emergency. It's good to know Kris got through this so well and didn't need to text for help. I'm making a list of the folks who have offered to help and getting together for a meal with my main "helpers."
His surgeon won't insert a TEP during the primary surgery because of the radiation back in 2001. After Charles has healed he can consider that option. I am quite impressed with the quality of voice the TEP enables.
We will make sure Charles has two pain meds ordered. We took ChristineB's wise advice and did that for what turned out to be a surgical biopsy back in 9/14 and it worked out very well.
I haven't had any experience with ICU or SICU. I don't know if I can stay with him in SICU 24/7. Probably need to call before surgery so I'll know what to expect.
Sheryl
Wife/caregiver to Charles ENT diagosed SCC Rt Tonsil Stage IV, MET 6 lymph nodes in neck 1/2001 Tonsillectomy, RND and six weeks RADS 2/2001 ENT diagnosis from CT scan, SCC in Rt tongue 2/13 25% of tongue removed 2/13 (clear margins) SCC BOT with mets to 2 level 2 nodes and Lt. Delphian node 8/2014 Surgical biopsy shows cancer in larynx 9/2014 Laryngectomy, resection & rebuilt tongue w/ pectoral muscle, selective neck dissection 11/2014 Recurrences '16 HPV Neg No EGFR Mutations Detected
| | | | 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 | Sheryl, you seem to have a good grasp of things, I am sure everything will go well for you and Charles.
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. | | | | 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 | best of luck my dear. and definitely get the cell if you can. My ipad talks to my iphone all the time.. and my other family members who have iphones its a great convenience. hugs
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
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