Posted By: maris40 Parent of tongue cancer patient - 10-03-2013 10:02 PM
Hi,my name is maris40 and I'm new to this forum. My daughter had surgery for tongue cancer and I'm living with her and hubby. While he works I'm alone with her during the day and she hardly speaks to me anymore about things. Before the surgery we had many nice adult conversations,I'm beginning to take this personally,but I know better,which is why I need this forum.I just don't know what to say to her anymore.
Posted By: Cheryld Re: Newbie not sure where to start - 10-04-2013 02:54 AM
Maria she's probably terrified did she have surgery only?
Posted By: ChristineB Re: Newbie not sure where to start - 10-04-2013 04:31 AM
Maris, welcome to OCF! You have come to the right place for help with info and support for your daughter.

I have sent you a private message (PM). Look for the tiny flashing envelope next to the My Stuff tab. Its up towards the middle near the top of the page. If you click on that and check out the link in the PM, you will soon be a pro at navigating the forums.

Best wishes!
Posted By: TheresaC Re: Parent of tongue cancer patient - 10-04-2013 12:03 PM
Welcome!
I just went through surgery myself for tongue cancer. I have been with-drawn and kinda keep to myself more than I did. I know my parents are having a hard time with it. I think its because it is so scary and I try to be brave and do it on my own. I hope she feels better soon. Just keep trying to reach her. What kind of surgery did she have? Everyone is so nice on these boards and it helps a lot! I have found much comfort here!
Posted By: ChemTeacher Re: Parent of tongue cancer patient - 10-04-2013 07:05 PM
Welcome! I too just had surgery to remove a tumor from my tongue. Please don't take it personally that your daughter is not very conversational right now. She has a lot on her mind right now and if she is like me....she is VERY tired and it is difficult to speak. Give her a little space to reflect on all she has just gone through. The surgery is rough. She will improved each day and should be ready to talk after a few weeks. Be patient with her.
Posted By: donfoo Re: Parent of tongue cancer patient - 10-04-2013 10:25 PM
Just a thought. By the time 4 months post rolls around most are pretty well back on their feet, learning the finer points of the new "me". It it possible she does not need your help and presence as much now and just finds it difficult to communicate she is fine now with her own space?
Posted By: maris40 Re: Parent of tongue cancer patient - 10-05-2013 01:23 AM
Thanks,the info was very helpful,just knowing that we are not the only ones going through this and that things do get better. She had part of her tongue removed and a partial neck dissection,no radiation at this time,only monthly visits to the doctor
Posted By: maris40 Re: Newbie not sure where to start - 10-05-2013 01:29 AM
Thanks,Cheryld,yes it was a neck dissection and the partial removal of her tongue.
Posted By: Cheryld Re: Newbie not sure where to start - 10-05-2013 02:00 AM
Tell her to keep a very close eye on her neck and her tongue. Hopefully she won't need to worry but knowing what's normal in her mouth and neck once she is healed is important to detecting a possible recurrence. Believe me when I tell you I am not a negative person, but sometimes if they skip rads and chemo node or something odd will pop up. This is usually less likely if she's had a neck dissection, but it's a better safe than sorry mentality. hugs and just give her time.
Posted By: klo Re: Newbie not sure where to start - 10-05-2013 06:30 AM
Have you considered depression? Often when the enormity of what has just happened hits home, instead of feeling elated, some patients actually spiral into depression. For us it was 6 weeks out but wasn't recognised for another 3 months.

the other suggestion I have is that she is possibly feeling smothered?

You are doing the right thing in not taking it personally - she cannot think about you right now and is not herself.

The only knock down drag out fights Alex and I ever had were during and just after treatment. I felt he was acting like an irresponsible 2 year old, and he thought I was an autocratic sergeant major. He also felt smothered, fussed over and resented me for it. We got past it (after many a night fantasising about dropping him off on the side of the road for some other poor woman to find), and we have the strongest relationship of any of our friends (IMO). He is considerate, regularly tells people that I am goddess (entirely true of course) and if he forgets, I tell them for him smile

It will get better, and that's a promise
Posted By: Kerri Re: Newbie not sure where to start - 10-05-2013 06:36 AM
Hi, Maris.

I'm sorry about your daughter's cancer and the strain that you are feeling in your relationship. You are right in your instincts not to take it personally, as hard as that may be.

I can remember sitting in my recliner as I recovered after my first surgery. I'm not sure how far out I was, but I was in a deep depression. Even though I got good news in that I had clear margins and clear nodes from my neck dissection, I sank into a deep depression.

My Mom took a FMLA to come up and take care of me so my husband could return to work and so she could help take care of my 2-year-old dtr. I was at least 30 weeks pregnant with my second child, my son. I was just staring at the TV and I could feel her watching me. She finally said, "You seem very depressed.". I just flatly replied, "I *am* very depressed." as tears rolled down my cheeks. You must try to keep in mind that her life as she once knew it has been turned upside down by this disease. She was probably healthy one day and told she could die the next. That can lead to some serious emotional problems. I was diagnosed with PTSD, which only worsened after my second diagnosis, which was much more serious in that I would have to undergo more surgery and chemoradiation and now had 2 children.

She is fortunate to have you there to take care of her. She may need some time to come around. She may need to seek help for treatment for possible depression/anxiety. It affects all of us...caregivers just as much, I think. Please remember to take care of yourself, too. Since she is a little further out from her surgery, you may not need to be there as much and you can take a probably much-needed reprieve.

I am confident that things will "normalize" in time. Things have changed for all of you and time, and perhaps with some specialist help, it may make all the difference in getting you back on the road to having your "old" relationship back.

Best wishes,
Kerri
Posted By: maris40 Re: Newbie not sure where to start - 10-05-2013 05:15 PM
Thanks,Karen,its been 4 months out for us and some days I notice a change in her mood,as she is more receptive in talking and other days not so much,I believed she would feel a relief that surgery went well,never thinking depression. As for feeling smothered,I am going to visit my sister up north and let her and her husband be alone,maybe with not so many people around,she might actually have a chance to think.
Posted By: PaulB Re: Newbie not sure where to start - 10-05-2013 05:26 PM
Could be pain too. When I have it, I don't want to be bothered, and don't talk much.
Posted By: maris40 Re: Newbie not sure where to start - 10-10-2013 09:21 PM
I want to thank everyone for all the helpful insight into being a caregiver of a cancer patient and after 4 months of very little communication we are beginning to talk and joke like we used to. It doesn't happen everyday,some days are good and some aren't so good,but at least I understand why and when to back off.
Posted By: PaulB Re: Newbie not sure where to start - 10-10-2013 09:29 PM
That's progress. Glad to hear it.
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