Congratulations on a successful surgery! The drool is common. I had that, still do from last weeks surgery. It's the anesthesia also, being intubated, other medications, nerve manipulation. It should resolve, but let your medical team know everything, they usually asked me to smile to see what nerves were effected, and writing the day of surgery is a good sign of your recovery. Just be careful of aspirating, fluids going to the lungs, which staff will tell you or have you sit up when eating, drinking, swallowing. They also had me use this gauge, like a little genie toy, to blow in, forget the name, to increase your lung capacity, get the fluids out of the lungs to prevent pneumonia, plus walking when advised and able to do so.

I'm in NYC also, and may have even bern treated the same hospitals. I've been to a few.

Btw, I haven't tried alternative medicine, seen plenty of quackery through the years, and the only proven way for a cure is through conventional treatment, but with the doctors approval, a healthy, well balanced diet can't hurt, mediating, reading, exercise, support groups, avoiding certain toxins and such.

As Tony said, don't worry about anything now. Get trough this, and take one day at a time.

Hi All,
I am back. Thank you for your words of support.

I am having severe pain today, so bad that I think something might be wrong. I had the stitches out yesterday and I was hoping I would have less pain but I am having more. I am taking some pain meds but it doesn't seem to help. It's hurts so much I am seeing stars. Not even sure if I am making sense. I thought it would hurt less. Why is it hurting more? I keep getting these jabbing pains and it is so tight.

I've tried moving as much as I can and I've been active. Anything I can do for the pain? Does this go away?

Im so sorry to hear you are hurting! Swelling can make things hurt as it usually means something is now pressing on a nerve. If you continue to be in alot of pain, dont delay go see your doc to get thoroughly checked out. Ask for stronger pain meds to help you manage the pain better. It is actually detrimental for a patient to suffer in pain, it also causes unneeded stress and worry.

I understand all too well the pain you are describing where it feels like you are being stabbed. Its enough to stop you dead in your tracks. Ive been thru that myself and its awful. If you arent already taking neurontin, ask your doc for a prescription for it. It was originally designed to help with seizures but it works great on nerve pain. The only other thing I can think of (if you can tolerate it) try icing the area that is hurting. The cold may help reduce any inflammation.

I hope you get some relief very soon.

Maybe the recent stitches removed caused some of the pain to worsen. Different or more pain meds may help. Calling the doctor service, going to the ER may help or waiting until tomorrow when their practices opens. Maybe moving around is not quite the activity to do until the cause is found.

Good luck.

Yes, ChristineB, the stabbing pain with a jab jab jab that makes one see stars. That is it. I am going to call tomorrow, going to ER here at this time would mean no sleep for me at all. I have oxycodone with aceta.

Is there a way to reduce the tightness? Did anyone try self massage? I've been trying some light lymph drainage and touching the area around the incision. Everything is so tight and sore, it's like a rock in there. I feel better when I do things but don't want to over do it.

I am eating fine, throat is swollen some but basically food is going down and I have to gain some weight. Do I really need to gain that much weight?

That you are eating normally and thinking about gaining weight is a positive sign showing you are successfully getting through this despite the (significant) pain. I said in my previous post that today all we have to do is figure out how to get through today, tomorrow will take care of itself. Well, sometimes when the pain is at it's worst (and you may be there right now), we figure out what we have to do to get through it hour by hour.

That you are able to write as well as you are doing is another indication that despite it seeming like it's really bad, that you are handling it quite well. You are being tested by this, not doubt about it, but you're not being found lacking. Even your choice of usernames shows a lot of strength.

So, go see the doc when you need too, be persistent with him/her until you get your needs met. Camp out on his doorstep if necessary, but get those needs met. You are learning how to be a good advocate for your own care. Doing that often looks like being the squeaky wheel in need of grease. I thought I was a royal pain in the side of my RO (radiation oncologist), but he said it was no problem at all because it showed I was really involved in my own care. Despite the extra work it creates for them, they actually like it when patients are good advocates for their own care. My doc said most patients were not good advocates. They wouldn't talk, wouldn't ask questions and didn't want to learn about their disease, it's treatment, or what they could do to make it better. That just makes everything harder on them.

Now, to answer your question, do you really need to gain that much weight? The answer is both a yes and a no. That you will lose weight in treatment is literally a guarantee. I've seen no one go through treatment and not lose weight. All I had was radiation and surgery (no chemo, because of no lymph node involvement), but I still lost 42 pounds; and I had very few side effects. I was able too and did eat pretty much normally throughout treatment. Now, I was a plump little donut before treatment began, so I had the extra weight to lose. But if I had been skinny before treatment that much weight loss would have created a medical emergency.

You don't know this yet, but will learn it soon enough. Lose too much weight, become malnourished and they both put you in the hospital (to feed you intravenously) AND they stop your cancer treatment until you regain weight and strength. You don't want them to stop your treatment in mid cycle, that's bad for you and good for the cancer. So, we tell all new members, to eat, eat, eat. It's way better to have some extra weight you can afford to lose than the alternative of losing weight you can't afford to lose. Besides that, you will lose a significant amount of your taste for food, so enjoy the things that taste good right now, because soon enough they won't taste good anymore. Ask us how we know this, like I said I'm one year post treatment and food still tastes mediocre to bad.

I've written too much already, keep fighting, you are doing great, you will win this battle.

Tony

QueenKong

My mother has gone to therpy after her radiation . Massages were done to losen up the tightness and swelling. As long as my mother walks around the house the swelling will go down but as soon as she gets back into bed BAM there it is again.Then pain gets worse when the swelling brews up.
The massages do help some but it doesnt totaly go away. Me and my family continue to massage my mothers face just to get that little bit of releif. Just barely touch the area very lightly and rub around and around. "very Lightly" because the nurse told me the fluid is just under the skin so dont press to hard at all.

Hope you feel better soon
Heidi

QueenKong I recommend gentle massage to help drain any build up of lymphatic fluid. Stephen my husband is 13 months post mandibulectomy/lymph removal and the swelling varies depending on his level of activity and the coldness of the weather.

A couple of months post radiation, his face got swollen very tightly. And within a few hours it was dark red and huge. He was about to fall asleep but I insisted he get up and look in the mirror. At that point, we got in the car and drove straight to the emergency. It was a little scary but we didn't panic. The staff at the emergency were very happy we showed up when we did because it was an infection. They told us that after radiation people are more prone to infections. They are easy to treat with double antibiotic intravenous drips. Once the initial doses were given, they sent us home and we had daily visits from home health nurses come and administer the antibiotics for the next couple of weeks. We also had to go to emerge once a day for an extra dose.

At first Stephen was scared because he didn't know the difference between a general infection and an infection of his new jaw bone. Once we were explained that jaw bone infection would be much more rare, painful and that the oral skin would show signs of redness but not so much swelling we got the hang of it. We don't worry about his jaw swelling anymore, its a part of our daily reality though.

Once you have gained your strength and your body has healed from the trama of the surgery you can prepare for the radiation by focusing on sleeping, eating, drinking 2 litres of water and doing some jaw and neck stretches.

Stephen was lucky to see the speach pathologist and physiotherapist a week or so prior to his radiation. There is evidence that starting your stretching exercises before treatement increases your overall mobility.

I hope you are doing well and focusing on what you need today. All of this info can be put aside until you meet your oncology team.

Welcome to the OCF family, Sophie

Hi Everyone,
My neck is still hurting from the radical dissection. It feels like a fist in there squeezing with a jabby ice pick. I've been trying to stretch it, massage and have oxy to take plus recently lyrica. It never stops hurting and it's been over a month. Is this normal?

I'm getting a port in tomorrow, makes me want to cry. It'll be the second time I have one of these.

Treatments chemo & rads to start on the 5th of January. I had mask fitting, pet scan, ct scan and MRI last Friday.

In the meantime, putting on weight. How much should I gain? I've gone from 127 to 142. It sucks after it took me so long to lose all that weight.

Any ideas on how I can prepare for treatment ordeal?

Hi QueenKong. I haven't had a radical neck dissection but just want to express my sympathy. Aren't there stronger painkillers you can take/ask for? When you have the port put in, can you ask for more pain relief? Or is that what the port is for? Whatever the reason for the pain, I firmly believe you should be relieved of it in this waiting and healing time before RT and chemo.

I found Oxycodone wonderful for moderate pain and great for its feel good factor but if I had severe pain I'd want something stronger. Sometimes Oxy made the pain worse but allowed me to cope with it better. Weird ... we're all wired in strange ways.

Can you talk to a dietitian about weight and nutrition? I'm not sure if you need to put on more weight but I do think you should be out of pain as much as possible and enjoying your food. You sure as hell won't enjoy it for a while when you lose your taste. Then it will be a duty not a pleasure.

Are you having counselling? Seeing a cancer nurse for emotional support? Relaxation exercises? You are going through a horrible ordeal and need to be bathed in support.

Best wishes
Maureen