Have been reading forum posts over the last 4 months since my husband was diagnosed w/SCC. He is 57, never smoked and only occasionally has a beer. He is also a survivor of non-Hodgkin's Lymphoma and had a stem cell transplant in 2005 leaving him with graft versus host disease and a suppressed immune system which Docs say led to the SCC. His first cancer treatments (back in early 2000s) were at the National Institute of Health - words can't describe how wonderful those folks are. His most recent cancer has been treated at San Antonio Military Medical Center.

Thanks to whomever posted info on VHC nutrition drinks - I was looking for calories and once I figured out VHC meant Very High Calorie I found it and have kept a supply. Read a lot of posts about PEG tubes. My husband's went in before his initial surgery in Sep and has been a blessing. He has maintained his weight throughout this entire dance - granted a significant portion of it is sitting at his waist but Docs say weight is weight. Probably only time in our lives that a Doc will say "full fat everything." He got to where he could eat ground up food and soft stuff like pancakes after the surgery but the radiation put that to a quick end and he has eaten only via the PEG for probably the last 10 weeks or so.

More to follow....

The PEG is easy to care for with about a 10 inch tube coming out of his skin. We feed him via gravity inserting a fat syringe in the PEG and using a funnel in the top of the syringe since my aim leaves something to be desired - actually he does most of it. My scientific approach to the funnels - Dollar General - I wash and reuse the syringes and funnels.

Interesting to see how many folks are put into a coma following some of these procedures. My husband's surgery lasted 12 hours and he then was in ICU for 4 days and out of the hospital after a total of 7 days. I really expected him to look like the elephant man coming out of surgery but the swelling was no where near as bad as I had anticipated.

More coming....

Husband had a trach in which he tolerated very well - note trachs are supposed to be cleaned like every 12 hours or something - make sure this happens! At one point my husband's trach didn't get cleaned and it compromised his ability to breath - and of course caregiver of the year here, thought the heavy breathing was just the exertion of walking. Trach removed before we left the hospital.

So we came home from the hospital with a trach site to clean, a transplant site, a PEG tube, a huge incision from just under his ear to under his chin and enough medical supplies for a small country. Biggest fear - that the skin graft they put over the transplant site would come off when I changed the bandage. Doc told me at one point it would have been fine - I told him I would have been tramatized for life.

Yep I've saved up my saga - if nothing else for the poor folks that choose to read this, if nothing else maybe it will put you into a very restful sleep....

So husband progressed well after the surgery. Returned to work 3 weeks from the day of the procedure, using a walker. We're fortunate that we work for the same organization, have desk jobs, had loads of sick and annual leave saved up, and had tremendous support for working part days in the office. From my view continuing to work is hugely important both for the patient and the caregiver - it gets both your minds on something other than illness and it's healthy to have a reason to get up, get dressed and get going.

Note - had a bright idea at one point of getting a motorized wheelchair - thought he'd enjoy tooling around and reeking havoc. Reality - I can barely lift the regular wheelchair into the bed of the truck; no way I could have lifted one with a motor.

So through initial radiation treatments we fed him by mouth but he tired very quickly. My guy is a meat and potatoes guy all the way. No way he was drinking vegetable smoothies. Not saying there was much nutrition involved but Vienna sausage, regular cooked sausage, drippy eggs with bread, and gross, but he likes it, coffee and milk with crushed saltine crackers (I think it's the West Virginia answer to biscuits and gravy).

So just about the time my husband thought he'd made it through pretty well and the surgeons were pleased with their work....the Radiation Oncologist got hold of us.

Note: An anxiety pill (his was Adavan) right before you go in and have your head bolted to a table for radiation is a good thing! Also when the repeated assault on your neck becomes horribly painful -cut the nect out of a t-shirt.

The idea of chemo for my husband was a tough pill since he'd been through repeated cycles with his first cancer. They admitted him for the first chemo treatment just to ensure he'd tolerate it well. Did fine but they mean it when they say cisplatin is bad for nausea - first nausea medicine was a no go but second one, Zofran, was the ticket.

So intellectually you know that radiation is cumulative - but there are those of us that chose ignorance until it smacks us in the face. My husband's ability to swallow went very quickly (thank heaven for the PEG), this was in some part I think (with of course my non-existence medical training), due to the issues he already had with swallowing and thrush resultant from graft versus host from prior transplant. In any case, it will always remain a mystery whether or not he forced himself to swallow periodically, he said he did but in any case he hasn't been able to swallow now for about 5-6 weeks. The RO said his throat would heal and energy come back within 7-14 days of the end of the radiation. Apparently we blew that curve out of the water as he's over 3 weeks done and throat still raw and swallowing ain't happening. Next stop is the speech pathologist - hoping they can talk him through and dilation isn't required.

Running out of steam but have chocolate and will continue...

Ah man just lost about a whole post - bummer. Once again... so we thought we were out of the woods - surgery check, chemo and radiation check. Oops a massive DVT (blood clot to the uninitiated) in leg where graft was taken. We should have thought of this and had my husband in the blue compression things all along - he had a DVT years ago during the first cancer. They are horribly painful and put him back in a wheelchair which he'd only used about 4 days up to this point. ARRRRGH!

So now it's Lovinox twice a day.

Note: Lovinox comes in prepared syringes with the dullest needles known to man. Fortunately on of the nurses gave me a bunch of 3 gauge needles and showed me how to switch the medicine to a different syringe - makes a huge difference in how getting the shot feels to my husband.

So now you are up to date....one more post and i'll call it a wrap.

My husband is back to walking w/a cane so the Lovinox is doing it's thing and the DVT is dissolving. He has an amazing tolerance for all this and even more amazing his caregiver hasn't killed him yet.

Note: When your spouse has a blood clot in his leg, it isn't a good thing to run the wheelchair into the back of an elevator - yep one more point for caregiver of the year.

My heart goes out to those who have to deal with all this and the cost of medical treatment too. As a retired military family we have had minimal expenses. Also with my husband's treatment at the San Antonio Military Medical Ctr, it takes about 2 seconds to get things into perspective as you pass young men and women who have lost limbs, been horribly burned but who, to a person, are fighting through it. This sucks but there are those with much more on their plate.

My husband is coming back fast - he's yelling at the football game so I know he's feeling good. Humor and a take no prisoners attitude are what get use through. He does what he can - if he can get to the truck and go out with me he does, even if he can only sit in the parking lot and wait. He gets tired of me asking if he needs anything and I get tired of eating by myself. It hasn't been easy but we have not once cried or considered anything other than a positive outcome from this bump in the road.

Note: yep, I've had more than one or two vodkas and cranberry pomegranate juice over the past several months - ok so over the last couple of days even. The cranberry juice is for my kidneys, they say pomegranate is healthy and I just through the vodka in for flavor.

Well hopefully this has been helpful on some level for someone. If not, it's a good thing there's lots of space in the computer cloud since it's much longer than I had intended.

Take Care Ya'll!

Scotty, welcome to OCF! Im sure your experiences will help some of our members who are in treatment.

To any patient who plans on reusing funnels and syringes for their feeding tube, use extra caution! When reusing supplies, it can pass along germs and this can lead to infections and big complications so please be careful.

The RO who advised your husband would have his energy back 7-14 days after finishing is wrong! Radiation keeps working even when you stop going. It will be one month of recovery for every week of rads. After the first 2 or 3 weeks post rads, the patient usually will begin to improve. Small advances will happen on an ongoing basis. Keeping a journal will help to see the progress. Usually most patients are doing pretty good 3-6 months post rads. A complete recovery can take a full 2 years. Its full of ups and downs with a good setback thrown in every now and then to keep you on your toes.

Best wishes with a continued improvements in your husbands recovery. Dont forget to also take time for yourself. Caregivers have it rough too.

Welcome.
Your posts bought many a smile to me. I identified with lots.
Humour is definitely the way to go and helps heaps with getting through all this.
By the way, You, are a Fabulous Caregiver. There are many of us Caregivers of the year on here. " get in behind"!
Keep us posted.
Tammy

Hi Scotty:
Welcome to both you and your husband into your new family. It's a big one and very good at supporting both patients and caregivers. We've all been where you are now, so we do know what you're going through.

I am prior military too, so all my treatment is through the VA in Little Rock. My drive is one hour each way, but luckily I was able to do the radiation here in Hot Springs, an 8 minute drive. I just finished radiation last Friday, so I'm only a little distance behind you. Yes, I have a very sore mouth; mine is mucositis and thank goodness I have lots of oral lidocaine gel; it's what gets me through the day. Ensure is about all I can get down right now, but I'm absolutely fantasizing about a bacon cheeseburger and fries that will come my way sometime in the hopefully not too distant future. Many tell me that could easily be 6 months from now. Oh well, I've got plenty of Ensure in the fridge.

So, we're all looking forward to getting to know you through your forum posts. Write when you can, ask the questions you need answers too, we have lots of answers.

Good luck,
Tony

[quote] Many tell me that could easily be 6 months from now. Oh well, I've got plenty of Ensure in the fridge. [/quote]You are doing pretty well. No promises but I'd be very surprised if you don't get that cheeseburger down in a couple months. I was a couple months out and the fries tasted chalky,mealy,dry. A couple months more and all is good. As to the Ensure you really need to shift toward protein based nutrition. Both have the exact same caloric value and protein does not have any sugar. If you care about your dental health the faster you ditch the sugars the better.