| | Joined: Dec 2014 Posts: 13 Member | OP  Member
Joined: Dec 2014 Posts: 13 | Hubby finished treatments last week. Still a long road ahead, but I've been thinking about some of the tactics I developed to help us BOTH thru this, and thought we ALL could share some of our tips... I'll start....
Bedside - Swapped out his nighttable for a larger surface piece. A couple of old rugs on the floor, a lined trash can, and an extension cord for his electronics. I put all his meds, syringes, pill crusher, etc. on a tray on the bedside table, made for fewer spills/messes. "Spit bucket" - line a paper lunch sack w/ a quart sized baggie. Easy disposal. Yuk. Probably my least favorite aspect of this whole thing.
Bathroom - cleared off the counter, and set up some plastic bins by category - mouth, throat, daily meds, "as needed" meds. Got a water pik. Large quart jar w/ salt/soda mix.
SignUp Genius - huge help to me for organizing daily rides to rads. Could be used for meals too.
What are YOUR tips and tricks for survival?
Wife to patient with poorly differentiated, non-keratinized, squamous cell carcinoma in one tonsil. Stage 4. T2N2 with metastisation to three lymph nodes of the left neck.
Dx Nov '14
Tonsillectomy and neck dissection Nov '14
Chemo (cisplatin) & radiation started 12/10/14
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | MrsChickenPam, I believe we should be calling you MacGuyver!
My trick is breathing. When it goes well, nothing is impossible!
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | 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 | Uptown, I like your trick.
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 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Gloria, unfortunately, my trick doesn't work all the time. So far, so good, though.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Jan 2016 Posts: 1 Member | | Member
Joined: Jan 2016 Posts: 1 | This info is really helpful. I've been looking around the internet trying to figure out if there is anything I could do to be a little more prepared when my husband comes home from his surgery and during his radiation treatments. I've started making a list and added a few things based on this post. Thanks for the info! | | | | | Joined: Dec 2014 Posts: 13 Member | | OP Member
Joined: Dec 2014 Posts: 13 | Good luck, Mrs. J. The radiation is not a pretty process. Some challenges I felt I was unable to find a solution for.....
Medication - at the time, I was working outside the home 6-7 hours a day. Hubby couldn't remember if/when he took anything, wouldn't write it down, wouldn't use an app, etc. Easy to to pill "set-ups" for the regular stuff, but there were a lot of flexible meds (pain, infections, etc). I wasn't in the house to actually keep track FOR him, and he sucked at keeping track himself.
Balance - how much to do FOR him, and how much to simply leave him to sink or swim. Sounds kind of cold, but I didn't want him to sink down into being a victim/patient, and wanted him to maintain control over as much as possible without me simply "taking over" - not sure if I achieved the proper balance, but it's all behind us now.
Best of luck to you both! It's a rough time, but you WILL come out on the "other side" of all this!
Wife to patient with poorly differentiated, non-keratinized, squamous cell carcinoma in one tonsil. Stage 4. T2N2 with metastisation to three lymph nodes of the left neck.
Dx Nov '14
Tonsillectomy and neck dissection Nov '14
Chemo (cisplatin) & radiation started 12/10/14
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