| Joined: Oct 2008 Posts: 246 Likes: 1 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Oct 2008 Posts: 246 Likes: 1 | I posted on the Affect Effects Forum regarding a dental question that my husband is currently trying to sort out. Brian, Charm, and Jerry kindly provided clarification. I have added updated info there and hope to get some more input.
In that posting, I commented about so many things going wrong... Brian correctly reminded me that some complications are part of the process and cannot be predicted. This dental problem has magnified an ongoing problem - I am more angry at the tx than I am at the cancer. I know that without rad my husband would be dead but I just can't believe that the tx side effects are so barbaric and long lasting.
I am back in that anxious/depressed state from worrying about these dental implications and trying to get an expert opinion. I had to get out old paperwork and files today and it brought back all the old scary feelings. Actually, my husband has been doing very well and I should be grateful, instead of going backwards. Lottie
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin. 1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | Joined: Oct 2006 Posts: 209 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2006 Posts: 209 | Lottie, I understand the anger. Especially the anger. I understand the worry and anxiety. I've experienced the ugly, gut wrenching fear resurface while going through old files.
You are not alone.
You've been through trauma. Your recovery, and I don't know that recovery is the right word, will be in erratic stages. Perhaps adapting is a better word. Its a process with a lot of setbacks and frustration.
That's what your fellow caregivers are here for, you can let off steam and complain all you want. I am here to listen. You are not alone.
Ginny
Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Be mad, angry or whatever,, but in front of hubby, keep a smile. A smile goes a long way and much further than a frown. I understand the frustration only too well maybe.
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: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | "OCF across the pond" Patient Advocate (1000+ posts) Joined: Feb 2007 Posts: 1,940 | I think anger is just another tool in the box of tricks we use to keep on fighting this disease.Used wisely it can be very powerful.Used unwisely it can be counter productive as i have found to my cost.All i can say is that two years on i am still angry,but i use that to try and make sure as few people as possible have to be subjected to sub standard treatment,delayed diagnosis,ignorance and isolation.You have every right to feel angry,your life has changed and will never be the same again.You will live with this elephant in the room for a long time,but as someone once said what doesn't kill you makes you stronger.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007 Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | Joined: Oct 2008 Posts: 246 Likes: 1 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Oct 2008 Posts: 246 Likes: 1 | Thank you all for taking the time to answer. After being strong for a long time, these feelings caught me by surprise. During my husband's tx and horrible recovery period, I felt that I did a good job supporting him, providing care, and keeping things in order.
I think I have to try to remember that this process, as Ginny says, will be erratic. Anger is normal, as Jim and Liz point out. Being hard on myself is not useful. It's not easy when anxiety takes over. I obviously have not accepted all the permanent changes, especially that the worry never ends. Lottie
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin. 1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
| | | | Joined: Oct 2006 Posts: 209 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Oct 2006 Posts: 209 | Lottie, have you felt comfortable in talking to your husband about what YOU feel? One thing my husband feared the most was being treated "different." Although he became a cancer patient, he mostly still wanted to be "Mike". "Mike" the husband who deals with spousal moodiness and wants to comfort his wife. Mike the "Dad" that helps fix problems. Mike the "friend" to his buddies that visited and they could cuss and complain about the Cleveland Browns. He did not want anyone to put on a face or a front. Yes, he needed care, and compassion, but he needed to keep his identity as well. And that meant seeing the good and the bad that we all go through. Admitting that I was scared. Or wanting to cry. Or ashamed to be so petty as to wish I could get away and get a pedicure. It took me a while to learn this. But it seemed to give my husband relief for me to be myself and honest and open.
Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
| | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Dec 2008 Posts: 1,004 | Lottie,
I agree with a lot of what everyone is saying here. As a patient one of the worst things, in my opinion, was being treated differently. I HATED it. When I walked in the room it was like "oh..the cancer patient is here. Poor Suzanne..." it made me feel terrible. On that note, I agree with Ginny.
We have all been forced to go through our "c files" and no doubt we read those pathology reports and it all comes flodding back. I say, read them again, cry, fax whatever you need to fax (that's why we go to these darn things most of the time) and put it away.
The treatment part is almost easier in some ways because you are on auto pilot. You do what you have to do to. Now, it's over and you have time to think about what you went through. It will get easier and we are here for you for the walk:)
xoxo
Suzanne *********** T1 SCC on right side of tongue Age 31...27 when diagnosed 4 partial glossectomies No chemo or radiation Biopsy on 2/2/10-Clear Surgery needed again...no later than April 2011 Loving life and just became a mother on 11/25/10 It's not what we CAN'T do..it's what we CAN do:)
| | | | Joined: Oct 2008 Posts: 246 Likes: 1 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Oct 2008 Posts: 246 Likes: 1 | Ginny & Suzanne,
I have been open about my feelings until recently. We are a good team and discuss everything, good and bad. I will think about what you are saying. I don't want my fear to take over our lives, I'm usually not like that. Lottie
CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin. 1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
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