| Joined: Sep 2014 Posts: 4 Member | OP Member Joined: Sep 2014 Posts: 4 | Hi, I am new to this forum. I do not have cancer, however my best friend just recently had a neck dissection to have his tonsils out, plus several lymph nodes on each side after being diagnosed about 5 weeks ago. He is still in ICU, and is able to swallow and whisper, but is obviously in a lot of pain. He has several days to go in the hospital, it was a very difficult surgery and they took a lot of tissue.
My question is - what can I do to help him recover from the surgery? Are there things you wish you had at home that were invaluable or that you wished you had? His girlfriend will be his caregiver but I am trying to get things ready for his discharge so that they don't have to worry about those types of things once they're home.
Thank you in advance for any tips you might have. This is so scary, he is such a great person and it is so hard to watch him suffer. | | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Hi and welcome to OCF. I'm glad you found us, and you're asking great questions. There are plenty here with post surgery experiences so I'll defer to them about that. I know you can certainly help the caregiver.
Caregivers struggle to get enough rest, often dont eat properly and they need someone to share their worries with. Pre-cooked meals, help with housework and a friendly ear are always welcome.
I know its scary but try to keep a positive outlook for them. I always say keep the chin up, because its very contagious when it drops. A positive outlook is enormously important to recovery. 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.
| | | | 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, what a great friend you are. Kris had different surgery, so I can't comment on the tonsil surgery recovery. I'm hoping that his pain and meds to relieve it, are sorted prior to discharge. I so wished that we had had some help with the outside chores, particularly the lawn mowing. I also think that if you and others can give the Girlfriend some time out that would be beneficial. Someone to sit with your friend for a couple of hours while his girlfriend can get out for coffee, a walk, some shopping etc. Some help with meals. House hold chores.
I guess you friend will have radiotherapy in his treatment plan at some stage. Someone to help get him to and from all the appointments that become necessary , to share the load will help . At least an offer to support them through this - this simple thing is of enormous benefit mentally. I really just wanted Kris to be treated normally. I wanted friends to drop in to see him. To have a drink with him . To just talk to him. Many of us who have walked this path find that our friends drop out of our lives. The most important thing you can offer is your friendship and your time. I thank you for being such a friend. 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: Sep 2014 Posts: 4 Member | OP Member Joined: Sep 2014 Posts: 4 | Thanks for the ideas. I am 100% in on making sure they have the support they need to get through this. He will have radiation and chemo I believe and luckily the hospital is directly across from my office so I will happily go with him when she needs a break.
I've been lurking on this forum since he got the diagnosis and there is so much information it is overwhelming! Thanks again for the ideas. | | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Friends and family surprise you when something like this happens. Some people step up, some people fade into the background. Notably smokers, all my smoking friends suddenly faded into the background, probably understandable.
The people who step up to help are a Godsend. You see when you are sick people arent sure when to ring, when is a good time, you might be sleeping. So no one rings, and no one visits. Except for the few. Kudos for being one of the few.
Radiation and chemo I didn't think was normal straight after surgery. I may be wrong, I didn't have surgery. Do you know anything about the staging and the treatment? If you can add a signature it would give us more of an idea what he'll need to go through. 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.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | After a neck dissection, they usually like to begin treatment within 4-6 weeks, depending on healing, getting dental clearance. It takes a week or two to have the radiation treatment plan, and the radiation mask, CT simulation done before that.
Good luck.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Sep 2014 Posts: 4 Member | OP Member Joined: Sep 2014 Posts: 4 | Sorry the chemo and radiation will not be right away, I believe they said he'd be starting sometime next month. I will try to get more detail and make a signature. I know the primary was in his tonsils, stage IV in nodes on both sides. They removed one jugular vein and were able to get it off his carotid artery as it had started to wrap around. It had spread since his PET scan so they want to get started with chemo soon. It was HPV+ and he's also diabetic which complicates recovery. | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | I'm diabetic, and is problem in itself, and can compound treatment, healing, and infections. Tight glucose control should be maintained. I must say since I went down in weight, from my average of 245llbs to now 185lbs, my glucose level is much better, still not perfect. The steroids given to me during infusion, decadron, did raise my glucose levels so high they were unreadable (above 600), so that should be kept in mind, inform the medical staff or contact doctor. That is dangerous itself, can cause dehydration, and compromise the kidneys.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Welcome to OCF! What a good friend you are!!! Having a caregiver and someone who will help out as needed can be a huge help to both the patient and the caregiver. I suggest checking in daily to see what they need even if its just to hang out one day so the caregiver can get a break. All kinds of little things can be a huge help when recovering from major surgery. Things like walking the dog, mowing the yard, taking out the trash, doing a load of laundry, picking up prescriptions, bringing over dinner for the caregiver, bringing over a DVD rental to help the patient escape mentally for a short time, or driving them to their appointments all can mean so much. Just knowing you are there and ready to help any way you can will help them both.
Please keep us posted and feel free to ask questions. We will be here to help you. 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: Sep 2014 Posts: 4 Member | OP Member Joined: Sep 2014 Posts: 4 | He's still in the hospital but I think being released soon. In my searches I came across a thread on easy to eat foods but I can't find it again? Can someone post the link? | | |
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