Hi, I am new on here and have a boyfiend with tongue cancer stage 3, surgery to remove majority of tongue with replacement flap, 1 week trache, 3 week hospital stay, now in 4th week of 6 weeks radio and chemo, still just managing to eat and drink, flap still enlarged and becoming hard to understand. I am still working full time and now beginning to find it harder to cope with everything and not ever being able to switch off. I don't look forward to going home to the eating arguement (he is determined not to go back on peg but it hurts to eat) but then feel guilty as it is not me suffering. Nice to find others struggle too, peolpe keep telling me how strong I am but that is only on the outside!

Hey Tabitha. Welcome to the forum. Being a care giver is a very difficult job. You have to stop once in awhile and take care of yourself without feeling guilty. It's the only way to keep your sanity. My sister is also in week 4 of radiation and is getting the PEG put in today. It was extremly painful for her to eat also.

Hi Tabitha, welcome to OCF. A caregiver is a very difficult job. Its not easy taking care of an oral cancer patient. You have discovered a wonderful place where you can get tons of support to help both of you get thru this. Im sorry to hear you are struggling with coping. Im sure it isnt easy watching someone you love suffer. Going thru chemo and radiation without a peg tube is very difficult. Maybe pick up some Carnation VHC for him to drink. It has 560 calories per can. As far as the eating goes, here is a list of very easy foods. Hope it is helpful. Best of luck.

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

Tabitha,

Being a caregiver to us patients is one tough job and unfortunately it's only going to get worse for say 5 to 6 more weeks before it starts to get better. His job which becomes yours is to make this Tx as pain free as possible. In doing so he will be more able to consume the necessary calories (2500 to 3000) and hydration (48ozs minimum) each and every day and thereby reducing the severity of some of the side effects from this Tx. There are some side effects that neither of you can control like loss of taste and dry mouth but there are many that you both can keep at bay by proper amounts of "food" and water.

Please don't hesitate to ask any questions you may have or to just complain as we have all been there but the good news is we are all here to post about our experiences.

Hi Tabitha,

After nearly 30 years of marriage, I thought I had perfected the art of nagging. Things changed with the cancer. My husband can be very pig headed. I realized that some of this is his way of being in charge of his life and he was doing things his way to spite the cancer and not me or the doctors. I don�t argue over eating, using fluoride or taking pain killers. He knows what he should be doing. On the other hand, I call the doctor when his fever is over 103F, forced him to go to the emergency room when he was short of breath, make him take his antibiotics and antifungal tables and make it clear that there are times when I won�t take �NO� for an answer.

Tim still has his sense of humor, so I�m carefully learning how to use it to defuse the anger that comes when he gets frustrated. While waiting for a chest x-ray in the emergency room, I pointed out that even the nurse thought he was acting like an SOB (abbreviation on his chart for short of breath). Luckily it didn�t backfire.

I would suggest that you try some anti-anxiety/anti-depressant drugs. I went on paroxetine and it saved me. Having to be the strong one is very hard. Seeing the love of your life weak and in pain is very hard. It�s nothing like having cancer, but don�t be ashamed of seeking pharmaceutical help. And keep reading the Caregivers forum on this site. At least you know you are not alone!

Tabitha,
Welcome to OCF. You found a great place for information and support. I agree with everyone else on here, Being a caregiver is a very difficult job to us patients. We are often mooody and say things that we do not mean to say and may be hurtful. I know I said things to my caregiver that I would have never said and it was not me. We are here for you.

Thanks everyone for replying, He actually had a peg fitted before surgery but after beginning to eat again was very stubborn in the fact that he did not want to, as he felt, give up. Thankfully this week he has finally decided that the pain in his mouth is to great to continue to try to eat so hopefully will be back on peg shortly. We are both feeling better this week as a self imposed trial run of stopping the anti sickness medicine has actually stopped him feeling sick, they said in some cases anti sickness made people sick but were not happy with stopping it themselves so he did, a happier patient all round. today is the first day of week five so end of next week is the end of planned treatment, it kind of feels in sight now!
it is so lovely to read of long term survivors as you normally only read bad things on line and my spirit has been lifted greatly.... Thanks