| Joined: Apr 2014 Posts: 40 "OCF Down Under" Contributing Member (25+ posts) | OP "OCF Down Under" Contributing Member (25+ posts) Joined: Apr 2014 Posts: 40 | Anne-Marie, Simon is going to see radiologist tomorrow. Unfortunately, I won't be able to accompany him but will tell him to ask for another mouthwash.
I like the recoding method. That way one doesn't have to argue. As I'm not home all the time it's tricky but I figure the weekend was a fair indication about his intake.
Will give it a go though. Thanks.
Heike
Working caregiver of my husband (51) Simon
03/2014 oropharyngeal cancer, stage IVB, T2N3M0, HPV 16 + 04/2014 Neck dissection - 39 lymph nodes removed, one node positive greater than 6cm, tumour in tonsil reaching into soft palette 28/04/14 begin of treatment 33 x RADS 66 Gy, 33 x chemo cisplatin 13mg each 29/04/14. pick two lines 12/06/14 finished treatment 09/ 14 Pet scan clear
| | | | Joined: Apr 2014 Posts: 40 "OCF Down Under" Contributing Member (25+ posts) | OP "OCF Down Under" Contributing Member (25+ posts) Joined: Apr 2014 Posts: 40 | Thanks Christine. Yes, it is frustrating, it feels like looking after a toddler sometimes � but on the other hand I don't want to discredit anything as I have absolutely no idea what goes on inside the body and mind and above all what it feels like.
Learning from you OFC members I have started the process 'to back off', that means he has to take charge in taking care for himself. Having said that, I have just been diagnosed with a couple of health issues myself and need to take care of myself for a change. It's easy to dismiss oneself when being solely focused on one person.
Heike
Working caregiver of my husband (51) Simon
03/2014 oropharyngeal cancer, stage IVB, T2N3M0, HPV 16 + 04/2014 Neck dissection - 39 lymph nodes removed, one node positive greater than 6cm, tumour in tonsil reaching into soft palette 28/04/14 begin of treatment 33 x RADS 66 Gy, 33 x chemo cisplatin 13mg each 29/04/14. pick two lines 12/06/14 finished treatment 09/ 14 Pet scan clear
| | | | 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 | A waterpik is tool that uses pressurized water to get into the tiny spaces between teeth. Its available at most pharmacies and retail department stores here in the US or online thru our Amazon link. Waterpik @ Amazon I already typed the search word in, just hit enter on the Amazon page to bring up the waterpik. 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: 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 | Heike, this is the link to Waterpik in Australia http://waterpik.com.au/
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: 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 | Heike, I ordered a Waterpik from one of the online pharmacies in Australia. Just google it and see what comes up. 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: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Heike you can find Waterpiks at Harvey Norman if you want to see one before buying it, I bought mine at Chemist Warehouse, it was cheaper. 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: Apr 2014 Posts: 40 "OCF Down Under" Contributing Member (25+ posts) | OP "OCF Down Under" Contributing Member (25+ posts) Joined: Apr 2014 Posts: 40 | Thank you for all your entries. Will head off get one.
According to specialists Simon is remarkably doing well. He's lost now 30kg and is eating / drinking the bare minimum. I guess it's up to him whether he wants to speed up recovery and looking after himself.
I, have been in a lot of pain and pushing myself too much and above all forgot to look after myself. Now I'm struggling with degenerative arthritis in my spine, prolapsed disc and neurological pain that may cause irreparable damage to my spinal cord and legs facing spinal surgery.
To be honest my feelings are ll over the place. A bit much to take in �. Simon cancer and myself possible spinal cord damage �
Trying to keep it together. Thanks again to all of you.
Heike
Working caregiver of my husband (51) Simon
03/2014 oropharyngeal cancer, stage IVB, T2N3M0, HPV 16 + 04/2014 Neck dissection - 39 lymph nodes removed, one node positive greater than 6cm, tumour in tonsil reaching into soft palette 28/04/14 begin of treatment 33 x RADS 66 Gy, 33 x chemo cisplatin 13mg each 29/04/14. pick two lines 12/06/14 finished treatment 09/ 14 Pet scan clear
| | | | 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 | You have a lot on you plate, Heike. It is so tough having to look after Simon when you yourself is not in the best of health. You can only do so much.
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: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | Nutrition and hydration are vital for healing. Vital. He should not be thinking "I'll just lose weight I can afford to lose some, I'll just get it back later" as many of us do. It doesn't work that weay, and makes your recovery much longer. The experienced folks here will harp on about it, because its true.
My mum has degenerative arthritis right now too. Her husband is under chemo for lung cancer, her daughter is recovering from chemo and a masectomy and her son, me, is dealing with SCC! Every journey is different and you're on a tough road. I hope you are getting the support you need and if there is anything we can do to assist, please ask. 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: Apr 2014 Posts: 40 "OCF Down Under" Contributing Member (25+ posts) | OP "OCF Down Under" Contributing Member (25+ posts) Joined: Apr 2014 Posts: 40 | Reading your story Dave I don't think I should whinge. Oh boy, life can be cruel. Little do I know so it seems. Neuropathy is the new word in my vocabulary.
Dave, in fact Simon isn't doing well at all. Today he fell, getting dizzy all the time. He's not keeping up with fluids. Been thinking of taking him to the hospital. He seems to very weak.
No matter how much I whine he just doesn't see the need to look after himself but I shall keep pushing.
Heike
Working caregiver of my husband (51) Simon
03/2014 oropharyngeal cancer, stage IVB, T2N3M0, HPV 16 + 04/2014 Neck dissection - 39 lymph nodes removed, one node positive greater than 6cm, tumour in tonsil reaching into soft palette 28/04/14 begin of treatment 33 x RADS 66 Gy, 33 x chemo cisplatin 13mg each 29/04/14. pick two lines 12/06/14 finished treatment 09/ 14 Pet scan clear
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