All,

Another newcomer to the site. 3 more rad (of 35) left. 1 more chemo. Usual side effects but handling the process physically just fine. Mentally just flat out depressed as life has been perfect - great wife, kids, occupation, active -- now this. A lot of dismal outlooks from what I can tell and looking for more silver linings than I have been able to read/find.

I am not sure how I will find or adjust to a new normal and maintain the positive presence and influence to the family. I hate to think they will come to know me as something different than I have been - going from a strong provider to possibly more physically and emotionally dependent - and wondering how depressing a new normal will be knowing how good things were going and what this seems likely to bring.

Any real positive stories or thoughts?

Thanks.

J.

Age 47 Dx SCC BOT stage IV HPV+. RadX35 ChemoX3 (Cisplatin). PEG.

Welcome. If you made it this far without many complications, you are doing good. How one does during treatment is a measurement how one will do in recovery, but there are no guarantees for anything, cancer or no cancer. Another positive is being HPV positive, which responds well to treatments, and has less recurrences compared with tobacco related. Like any traumatic event, one goes through several phases to recovery, emotionally, from the initial shock, denial, anger or blame, depression, and finally acceptance. There is no set time for each, and some may or may not need assistance.

I sort of can relate, how will you continue, not let anyone see you weakened. All my jobs entailed me to respond to situations when others needed help or ran themselves, and was in a position of authority since my teens, and funny they were always related to protecting people one way or another. Just from chemo treatment, I went from mid 200's, i exercised all my life, to 130lbs in a few weeks, if that, no longer able to walk for 10 months, blinded, and heath severely compromised to near death. People that knew me from were shocked, and probably scared them for the rest of their lives, saying if it coud happen to me, it can happen to them, but I was able to somewhat recover, and still am 4 years later, unable or protect a mouse lol. I'm probably one of the worst case scenarios, but if I can do it, so can you.

Good luck with the rect of your treatments, and continue to do what you're doing. If you have any questions, ask your doctors, and post questions here.

Hi, Jasper
My husband's new normal is not that far from his old normal - he is still working at a job he loves, riding his horse, and doing his other hobbies. Eating takes a bit of thought when we eat out - have to be careful of hot peppers and dry meat.

After going through this experience with my husband, followed by my auto-immune issues, I do think we enjoy our time together more. Physical limitations are annoying - but with some cleverness they are manageable.

If you are used to being physically active, just NOT being physically active is physiologically depressing - to say nothing of the mental stress. Are you able to walk a bit? I feel that our walking the dog helped my husband make it through therapy in good order. Tai Chi could also help, if done carefully.

Do not hesitate to discuss your emotional well-being with your doctor - there is absolutely NOTHING wrong with getting a little medicinal help if you need it.

All my best - will check in later.

Maria

Hang in there Jasper. Its going to be tough for 2 more months, then things will start to improve. I am 7 month out and thing are not bad at all. Its 4th of July and having fun at a cookout. Just got out of the pool and played a game of basketball. Just watch out for spicy food, it seams to be everywhere. Keep up on the cals and water.

Hi Jasper,

Glad you joined and raised your hand. You have lots of positives to look forward to. I suspect as you point out you are suffering some depression which is common. Talk to your doctors and get some help temporarily in that area. There is no shame in feeling down and out suffering through all you have been through and wanting only the best for your family.

As you are handling the physical beating well enough, so should your recovery go. Everyone is different. I am very fortunate to have glided over many of the rough road many have endured and now just 4 weeks post, I feel like 90% man of old.

Only side effects are still feeling draggy and needing lots of quality sleep and a few minor throat pains that come and go but life can pop back quite fast and fully as my experience certainly supports.

hang in there and stay connected here. don

Thanks for the quick and helpful responses. I really need to hear these stories about enjoying life to at least some degree of what they had prior - it helps provide the hope to get through the current emotional low.

Maria - nice to hear from a caregiver and spouse and your comments.
Hockeydad - I skipped the cookout this year, but nice to hear you were able to enjoy normal holiday activities.

This is tough - appreciate the supportive comments.

J.

It is tough but you will get there and if you are doing okay through rads you will likely be pretty close to your old normal when you climb out of that hole! welcome!

Hi Jasper,
My husband was diagnosed with the same as you and we are about a year and a half out now. Life is relatively normal. We worry some, but he went back to work in the Northernmost part of Alaska on January 5th. Last chemo was on 10/26. It took several months to get back to eating everything, but he got there and has actually gained back about 20 of the 56 pounds he lost. (He had the weight to lose.)So, keep your chin up. It is hard, but it does get better. The times of Dr appts and scans are stressful, that's why we are here!!
Keep in touch.
Kathy

I will add that Kevin was very depressed at the point you are at. He was very frustrated and kind of hard to live with for awhile. We avoided invites to dinners. It was strange that our friends even invited us for dinner and couldn't understand why we wouldn't come. I had to privately explain that it was quite hard for Kevin to go places and watch everyone eat.
The one issue we have now is that he can't taste ice cream and it was a favorite. The kids always want to stop for an ice cream and he gets really mad! We wait until he goes back to Alaska for his 3 week hitch to get ice cream!!
What you are feeling is normal. Be good to yourself and know you will get past it.

Jasper, one more recounting for you, just because your words sound akin to some feelings I experienced. Actually I came down with stage 3 prostate cancer a few years back, and am on this site because I have a close friend with cancer in a salivary gland. Anyway...

What struck me strongly was how this came upon me right out of the blue and just set up a whole new trajectory for the rest of my life. And I felt ambushed or something like that. And I kept reminding myself that this was all real and no going back and so be it. I'd have to just go forward in the changed reality. But it sure made me sad.

But as it has played out things have not changed so much, I am healthy once again. I'm fortunate. But I was ready to accept and learn to be me under a changed reality that I hadn't wanted. So perhaps that internal acceptance has been a good learning for me. And however things turn for you, I can suppose that there will be plenty of good in it, and room for you to be yourself.