Hi,
Am feeling very scared and stressed, and wondering how to help my husband.
He found a lump in his neck in Oct. '09. Three biopsies, two ENTs and one
radical neck dissection later, and we were told he has cancer at the BOT
which metastasized to one lymph node in his neck. The rnd removed 48 lymph
nodes and luckily 47 were benign.
He has OCPD (obsessive-compulsive personality disorder - not the anxiety disorder where people wash their hands all the time or some such), dysthemia (chronic depression) and prediabetes, and these conditions are all making his
compliance extremely difficult. He had his first cisplatin and radiation treatments last week and seemed to get through the chemo relatively well, in that he only had a few faint sensations of nausea, which we were able to control with one of the medications. But since then, he has developed a "mental block" to food and eating, when he's supposed to be eating as much as he can. I've tried to get him to up his food intake for over a month now, and he's been fixated on his blood sugar, and then supplements (some of which he's not supposed to take). His RO scared the you-know-what out of him today, by telling him that if he lost too much weight, treatment might have to be discontinued, and 6 weeks of rad. instead of 7 would be as good as not having
had any at all. I guess this would mean that he'd have to start at the beginning again. And I thought the feeding tube was the scary part. I am sick with worry for him and super-stressed myself. We have no siblings or kids, and I have fibromyalgia, so am not in the best shape, but I'm it! Any comments on how to help him or encourage him, given his other conditions, would be very gratefully appreciated. The Cancer Clinic is bringing their psychiatrist on board, so hopefully that will help.
Anne

Anne,

Does he have a feeding tube (what we call a PEG)? If he does, there are many ways to get him his nutrition through that while he is going through this.

Given the variety of his other psychological conditions, it's great they are bringing the psychiatrist in.

Hopefully, this will happen quickly so that he can get assistance in bringing some of the anxiety/depression symptoms under control.

I know this is easier said than done but try to take care of yourself during all this. I'm sure the center can help you with someone to talk to as well if you need it.

Elianne,

You are in Canada where medical marijuana is legal and can be applied for from your health system. No matter what your views on this drug may be, it's just a drug, a tool to be used during this time.

Marijuana will help ease pain, act as an antinausea, anti anxiety and a "side effect" will boost appetite. Most Dr's and myself, object to the archaic delivery system of "smoking" it, which of course releases toxins and carcinogens into your system. Vaporizing it releases the cannaniboids and THC through water vapors and skirts those issues.

Ask your dr about it, but do not let them talk you into Marinol, which is just a synthetic THC. THC when not combined with cannaniboids (found in cannabis) will not give the desired effects.

Best wishes

Eric

anne,
yall are definately on a rough path but that path will still lead u to the final treatment. seems like u may have to fight gordon every step of the way, but there are many on here that had that fight and made it thru. u can do it too.
my hubbys treatments had to be discontinued for 5 weeks due to complications, they resumed right where they left off.
get the MO office to help with getting gordon a pump for the feeding tube, it can be hooked up during the night and feed him alot of nutrition.
good luck sweetie, my thoughts are with u.

Anne

Welcome to OCF. Im so glad you found this site to help you both get thru this battle. While your husband is going thru treatments, his moods may become more difficult. As a patient, I can sympathize with him. Treatments can be awful and make you feel worse than crap!

As far as his eating goes, what you perceive to be something mental may in fact be sores in his mouth and throat which makes it uncomfortable for him to eat. Doesnt matter what the reason is, it cant go on!!!!! This is something that will land him in the hospital for malnutrition or dehydration. It happened to me and a few others here who werent successful with ingesting their daily requirements.

You mentioned a feeding tube. I have all kinds of ways to get this going and make it work for him. First off, if he has a pump use it to give the feedings overnight. This will take the pressure off for daytime feeding. If he doesnt have a feeding machine...get one asap. He should be getting at least 3000 calories per day to be able to have the strength to fight this. If he is able to eat at all then he should be swallowing something several times per day. If he chooses to not do this, he may lose his ability to swallow and need to relearn this later. He must drink water, minimum 48oz per day.

There is also a tab for caregivers that will help you. If you havent already lined up friends and relatives to help out then start making a list. So many people will say what can I do...now is the time to make a list of them and take them up on it. Even if they do a load of laundry or drive him one day, its a break that you will need. If you dont think there are people to help, call the American Cancer Society, they will help you with providing a driver sometimes or even paying for meds. Having helpers is very important for your own health. If something happens to you, then who will help your husband? Not trying to scare you, it was mentioned in your post. Just making sure you line up some helpers to ease the burden.

Best of luck with everything.

Elianne,
It is very important that your husband have an experienced treatment team and hopefully he does.

Under the circumstances, the team's decision to bring a psychiatrist on-board sounds very wise.

You will need to keep his doctors apprised of his tendency to use supplements, because some of these can degrade the ability of the radiation to kill the cancer cells.

Hopefully his team includes a nutritionist that he is seeing at least weekly. If not I suggest you ask for one. The nutritionist will help make sure his intake of calories and fluids is appropriate. FYI, I never exceed 2400 cal/day, but my minimum daily fluid intake was closer to 64 ounces AND all of this was diligently monitored by the nutritionist.

A break in treatment is not good because it can allow the remaining cancer to recover.

Radiation can not be redone. Our head and neck tissues can only tolerate around 72gy total (normally given as 2gy/day, 5 days a week for 7 weeks).

If your husband does not have a PEG tube, you should discuss getting one with his doctors. If your husband tolerates the liquid diet, it can greatly simplify nutrition and fluid intake during treatment and recovery and it is easy to keep track of the daily calories consumed (to maintain swallowing capability, he will need to keep consuming a little soft food and fluid daily by month, but not much).

I am a bit surprised that he had a radial neck dissection and so many lymph nodes removed - only one being positive. It seem more common these days to minimize node removal (selective neck dissection) based on exploratory and PET scans, or rely totally on chemo with neck radiation to kill the lymph node cancer.

My thanks to everyone who responded.
He doesn't have any symptoms of a sore throat yet, as he's only had
7 rads and 1 chemo. The RO said it would take 2 weeks for the rad.
to start to have an effect on his throat. One of the radiation therapists
said the chemo might bring on symptoms a bit early.
So far he's physically able to eat, just with a mental block against
it, which I hope he's managed to get past after the scary visit to the
RO yesterday. Also, he doesn't have to have a feeding tube at this point,
but it's likely that there will have to be one installed at some point.
We are in a Cancer Clinic in Canada, and they have all the various
health professionals on staff, including nutritionists, counsellors
and psychiatrists. We'll be seeing a nutritionist every week, also the
RO and counsellor. We are incredibly lucky and grateful to have this resource.
I'm not sure why the ENT surgeon took out all the lymph nodes on the
left side. The one enlarged node was biopsied, also the base of his tongue
(during the rnd). Perhaps the surgeon thought it might have spread because
the one node was quite large (small ping pong ball size). He knew the large node had cancer cells, from a previous biopsy.
As for help? We have no family members at all (only my 91 yr. old mother,
who doesn't like my husband and is very undermining). Friends have offered
to help, but realistically, they're all working and can't really take
time off to do anything for us. I'm pretty much on my own.
I'll be checking other threads for ideas on food and nutrition and dealing
with the feeding tube (sorry, can't remember the acronym). Thank you
for all your comments and suggestions. At least here, I don't feel so alone.
Anne

If he starts acting mean to you or anyone, ignore it,. We have no idea of things we do and say. He might even lose some memory of the past year . Ilost at least that much from my memory bank and still have no idea about my life in those months. Just go easy on him and don'tget upset.

Psychiatrist is a good place to start.
I went threw chemo and rad just find.for some reason I went into the bedroom and didn't come out for 3 months.Depression is a so hard to get out of without help.When you feel alone with something like this,it makes it that much harder.He knows your there for him,but it might not be enough.Good luck