| Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | If you can't get pity from the people in here, then we are the ones in need of help. I would bet most of us know exactly what you are saying and where you are coming from. I think being alone is worse than the pain and alone intensifies it .I wish I wasn't afraid of the constipation and the misery it can cause, or I would take my pain pills and boot the pain outta here. LOL you know what? I do the deep breathing too.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 531 | Thanks Jim always nice to hear from you...I am feeling a little I don't know what to call it almost like well no big deal it was but now it seems like everything is back to normal I seem to be taking care of myself. My husband goes away almost every weekend in the beginning I understood and encouraged him to go to help a friend of ours gather wood for the winter. Now it has been every weekend. So I am left alone a great deal I am getting better at it but it still sucks...Hubby was great during surgery and hospital stay but now when he is home just sits in his chair and watches tv so most nites when he is home I am still alone anyway...He has a lot of his own issues and is tired after a weekend "working". Anyway I am hoping this pain dies down a bit I am sure my new family doctor will be helpful. The after math of this surgery is setting in besides pain also crying a lot for no reason and am recognizing depression. I can bring myself out but for someone who's life has been saved I sure am moody!!! probably from all the life changes smoking, pain surgery limitations and pain. No wonder hubby goes away and leaves me alone...lol I am not that bad...I am having a hard time of it but still under control for the most part...I really hope my oc doctor will rewrite my pain meds come tuesday when his office is open...Have a great thanksgiving my daughter is taking a stab at making dinner this year with my help...
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Sounds like you are having more of a personal thing going on there. I guess we put them thru some tough times along with us. I have no one hee but me, but I wish I had those problems too. You seem as if you would be fun to be around. I always was until this Oc hit and I must have gotten a new personality for a few months according to the one that lived with me. Everyone else sayd I was being normal for oc. Then she kept adding to them and believes they are true/. LOL I'll never know. I saw the surgeon that did my tongue rad seed implants today. He told me they had never seen anyone like me.. Rads and chemo and he said i went thru both like a breeze with no problems. I guess I was a 1st maybe. They hardly bothered me at all. Now even hair loss anywhere and I got blasted with those things. I hope things keep going uphill for you . Like they say. it all takes time.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Geez, sneak off and come here. LOL You seem like such a sweet person.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | 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 | Dianne: How are ya? Sounds like its been a bit of a rough time for you. Im so sorry to hear that. Seems like you had gotten off easily, but I had been concerned that it might not be that easy. OC is rough, no matter what the treatment. One thing you need to know, its ok to be weak, to cry, to need help, everybody does sometimes. Oral cancer and many other serious diseases affect so many things. OC turned me into a crying blubbering mess at times. Heres a little background on me. I have alwasy been overly independant, raised 2 children alone without help from anyone. No family, nobody helped me, parents died when I was young, I had no one, I divorced when my oldest was only 3. He chose not to participate in my childrens lives which may have been for the best. If I needed something in my house fixed, I paid somebody to do it or did it myself. Every single responsibility was up to me. I worked hard at raising my family to be the best that we possibly could. I was both mom and dad, my children were very well rounded. I taught then everything I could, fishing, cooking, horseback riding, ice skating, boating, swimming, you name it, we did it. This independance made me very strong mentally, I could handle anything, or so I thought. So please dont feel bad one bit about not feeling how others think you should. Mentally its very difficult and alot of people need help by taking meds or seeking a professional to speak with. Your husband may need some help dealing with this too. Alot of caregivers will need the same type of help, again nothing to be ashamed of. Some ego's dont deal very well with needing assistance. Maybe its your husbands way of handling things by spending time away. Physical labor for some helps them to cope with reality. Hope I didnt bore you too much by rambling on. Just trying to help you see a different opinion. Great job with quitting smoking. If nothing else, you accomplished this and also have a ton of new computer pals in your corner  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 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2008 Posts: 706 | Dianne- I too find myself just crying at random times and i don't even have cancer. This disease just affects everyone who is around it. It's such an individual thing too. My husband who is the one going through this hell is very strong and determined. He never complains and is self reliant. I want to talk about emotions and stuff and he just goes on about his business. I wouldn't want him any other way but I wish he showed alittle more of what he really feels. I guess we all have to deal in our own way and if you need to cry-GO AHEAD. There are way worse ways to handle it. You are not alone in this.
Sue
cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | One quote from "After Cancer Treatment" by Julie K Silver has resonated with me: "We didn't choose cancer, it choose us. I don't think that any of us in this ever growing club, which initiates unwilling members are completely fearless. I wish that I could take away any fear that you have. I wish that I cold eliminate my own fears. But I know that I can't. Instead, what I suggest is to use whatever fear you have as a means of motivating yourself to do the best job that you can to heal. If you have to live with demons, make them work for you." Best wishes 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
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