| Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Sal I know exactly where you are. I've been there and I can tell you it does get better. I won't lie, there are tough days. Many of them worse luck but you do have the strength to get through them. Just take it one day, one step at a time. Deal with what you have to as you have to. It does help. Being a caregiver is a tough job. You need to have someone to talk to so come here as much as you need to and vent. I did. I kept a blog and vented there also. Without these guys here I would have never coped as well as I did. So please come here and vent as much as you need to because we all understand. We have all been where you are.
As for eating in front of your husband I do feel for you. I'm pretty fortunate in one way (and the only way) in that Steve isn't a big eater and never has been. Food is a thing he has to do so my eating in front of him was never an issue for him. But I do remember feeling bad about it at times. Most of the time I lived on tv dinners and often ate after he was asleep. They didn't look overly appetizing to steve but were still nutrionally sufficent and tasted ok enough for me to keep me going. You have to eat. If you don't eat you get sick and then where is your husband going to be. Steve needed me to be well and able to be there. If I got sick and didn't eat then how could I be there for him. I wish I could be more help here. Sorry to say I can't though.
If you need to cry then do it. I did and it helped. I would go elsewhere and I would cry my heart out. Stress relief. If you can go do something nice, just for you. Even if it's taking just 10 mins to sit in a quiet spot with a cup of tea or coffee and just breathe. I know for me as a care-giver I felt (and often still feel) like I was continually holding my breath. So take some time to breath. Remember Sal we are all here, anytime. We are all over the world so anytime you need some one to vent to or advise there is always someone here who can help. Keep us posted on how you are please and don't forget we are here for you. It's a tough job being a caregiver. The hardest job I've ever had.
Wendy xx
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | Joined: Sep 2011 Posts: 19 Member | Member Joined: Sep 2011 Posts: 19 | Hi Sandy,
Thank you..yeah it is tough, yesterday was a real hard one for me..I had no strength to do much of anything and I know that that played a part in me feeling so helpless, so beaten down. Oh I am so happy I found this forum..so much stuff to read that will help me get through, to help me understand. I will be back and often.
CG to husband Rob - Stage IVA Squamous cancer of the left tonsil - T2Na- 8 weeks radiation, 3 weeks Chemo. Smoker, drinker, HPV & Epstein Barre
| | | | Joined: Sep 2011 Posts: 19 Member | Member Joined: Sep 2011 Posts: 19 | Hi WendyG ~
Thank you, I will be here to vent time and time again I am sure. I have spent quite sometime keeping it bottled up inside and I know that is not good. I do go to a gym and for about 30 to 45 minutes every other day..I may have to start using the punching bag to try and get out the anger that I am carrying.
It is a God send that I found this forum, I was looking for more information about my husbands cancer when I came across this. Everyone is so kind and helpful. I will be back ~
Sallie
CG to husband Rob - Stage IVA Squamous cancer of the left tonsil - T2Na- 8 weeks radiation, 3 weeks Chemo. Smoker, drinker, HPV & Epstein Barre
| | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | Sal, Deep breath...now release. You need to take care of you and yes please eat. I felt bad too but...I told Ron I have to eat to be strong and healthy to take care of him. Oh he would say some mean things to me when he couldn't eat and I did. "are you punishing me by eating?" "No, I am keeping up my stregnth and health to go to work everyday" He would get mad at me cuz I love to watch Hell's Kitchen and he would get mad when he saw food on TV. I can't stop that and I'm NOT stopping watching what I like on TV because it bothered him. We have other TV's to watch. Sounds mean huh? But really it's not. We need to do what we need to do to survive also even though we are not the ones with the cancer. He even yelled at the TV whenever they had stories of cancer patients or the cancer walks that he was sick and tired of hearing about cancer. Well sorry, it happens to other people too Ron, and these stories help with survival and hope to end these cancers! He would say mean stuff about me being "fat" even though he yells at me for saying that about myself, he says I'm not and he loves me just the way I am. So yep my head was spinning! So, I ate in front of him, I cooked for my kids whenever they came over because cooking is relaxing to me and I enjoy it so much. I always am cooking. I started to go out for a "me time" every Tuesday to BW3's for wing night to get out of the house and he would encourage me to go too. Or go out to dinner with my kids during the week so I didn't have to cook. It helps alot! I go do things. Now Ron is eating up a storm!! This second bout and surgery for some reason has made his swallowing much better for all the different textures and he is actually able to get down ground meat and chicken! I'm so excited!! And so is he. He even ate my bowtie italian pasta salad! He had to cut it up and add more dressing to it but he ate a whole darn bowl yesterday with the tomatoes in it too and cukes! It takes awhile but hang in there, it will get better! And please eat. I'm sure your husband does not want you to go without food.
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
| | | | Joined: Sep 2011 Posts: 19 Member | Member Joined: Sep 2011 Posts: 19 | Suez,
Thanks for the support..I am not a big t.v. watcher but we do watch The Big C and now instead of it just being a t.v. show it means so much more, it is true to life. Just got back from food shopping, I eat really healthy which is not the way my husband eats normally, he would always say to me.."eew, what are you eating" but now he says it smells good. That's good cause that's the way he is going to eat once we get over this. He is far too young to not change the way he lives his life as it affects other people as well and not just him..(it's heaven to get this off my chest.
As we enter into the last 2 weeks of his treatment he has an infection and he will have that looked at today, hopefully it will not stall the treatment. Anyway, thank you again..take care.
Sallie
CG to husband Rob - Stage IVA Squamous cancer of the left tonsil - T2Na- 8 weeks radiation, 3 weeks Chemo. Smoker, drinker, HPV & Epstein Barre
| | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | Can you maybe do a profile and add that signature part to it so we all may know a bit more about your husband and his treatments and dates maybe? No need to make it all medical sounding if you don't know everything in correct terms. Mine isn't exact but we all know pretty much what it means seeing we all have been thru it. Thanks and Good luck with the checkup on that infection today.
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Hi, Sal just checking on you. Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | Ya Sal where'd you go? Hope all is well with you and Rob. He sounds like my BF's lifestyle. Hope he is doing OK with that infection and it was nothing major, I know Ron had a ton of them when he went thru his Non Hodgkins bout because of the stents he had in his kidneys they had to be taken out and he was on IV antibiotics at home for 6 weeks! He was also going thru Chemo at the time also.
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
| | | | Joined: Sep 2011 Posts: 19 Member | Member Joined: Sep 2011 Posts: 19 | I am still here, today was his last treatments..but I have noticed the last few days his anger seems to be intensifying and I am just trying to stay out of the line of fire. It's as if I am walking on eggshells. He is very "short" with me..and I am quite the stubborn broad..so rather than start something I just walk away...and sit here in front of my computer in hope that he just falls asleep and I can have some peace for a bit.
CG to husband Rob - Stage IVA Squamous cancer of the left tonsil - T2Na- 8 weeks radiation, 3 weeks Chemo. Smoker, drinker, HPV & Epstein Barre
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | Keep hanging in there, Sal. You are smart to let it go. If it gets to be too much, a gentle reminder that you are on his side usually helps.
The person who is closest to them does the most work and takes the most abuse. I had to repeat the words, "in sickness and in health" in my head for my own reminder...and he didn't get nearly as far into treatment as anyone here. Just remember that this part is temporary.
It might be rough for a couple more weeks. Then he'll start to feel better and better as time passes. Congratulations on being done with treatment. You can now enjoy not having to make the daily trips. The less time spent in medical offices, the closer you will feel you are getting to a normal life. For me, it was huge.
Good luck!
Sandy
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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