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CMMoore Offline OP
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25 and 28, the youngest is married, the oldest is a single mother


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
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klo Offline
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Hi Christine

Firstly, so sorry that you are going through this, but I see your family and faith are carrying you through with dignity and grace.

Your question regarding your children is a difficult one, particularly as I have no children. So I am going to answer using my own situation when it was my Alex who I wanted to protect from the ugly truth. Just in case this response turns into an epic (as my posts mostly do) the short answer to your question is: as much as they ask for and as much as you feel comfortable to give.

Alex and I had some awkward silences at the time of diagnosis whilst we both contemplated the unthinkable but didn't want to raise it for fear of upsetting/destroying the other. Alex wanted to talk but didn't know how I would cope and I was fearful of forcing Alex into thoughts that he might not have considered and which might cause him to fall apart. The thing that I think might be common to your situation and ours is that Alex felt the need to protect me when what I actually needed was to be allowed to support him. And Alex needed permission to express his fear and guilt. To do that, we needed to address the elephant in the room.

I believe your daughters, if given the opportunity might want to step up and support you through the next few weeks and months.

If it were me (and remember I don't have kids), I think I would say something that gives them permission to talk or ask questions without fear of upsetting you and then proceed with an eye on how they are reacting to the information. I think you will be able to tell how much information they need by their questions and reactions.

I would also be inclined to speak to each separately at first as it may be that one doesn't want to know and the other wants all the detail. Then they can go off and discuss everything together (which I bet they have already done).


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
Joined: Nov 2006
Posts: 2,671
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Christine - I think that Karen has shed great insight on this and I would agree that saying something to your daughters in the way of allowing them to ask questions would be helpful. In softening whatever you say to them, perhaps you could include something positive like the help that hospice is bringing to you and Matt. Everyone is different in how they react to things and how they grieve and you know your children best. Being in "denial" is a normal response and needs to be allowed. I think knowing is better than not knowing the real situation. We've all felt the anguish of not knowing and waiting for results of some test or procedure. And of being comforted when others joined us to help us through it. The tears shed need to be acknowledged and shared to make the sadness a little lighter to bear. Whatever information you share with your daughters will make it easier for the three of you to support each other in whatever way is needed. Hoping for some peaceful moments of comfort for you and Matt and your girls.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Christine, I think you should sit down with the girls and have an honest conversation about what is going on. Let them ask all the questions they have and answer them to the best of your ability. If they aren't aware of the situation and what is going on they might resent you if something happens. My kids are 24 and 26 and I am divorced from their father. If something was going on with their father I know that they would want their step-mom to give them all the information she has. I'm so sorry that you are going through this but appreciate your honesty.

As morbid as it is when my mom was dying from pancreatic cancer I wanted to know the stages and what to expect. I know that every patient and situation is different but it helps us caregivers to hear the good, the bad and the ugly.


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
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Posts: 280
CMMoore Offline OP
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so, the daughter thing took care of itself today with the oldest, she stopped by to visit...
first of all, he would NOT get up and going today, blew of radiation completely, wouldn't answer the phone, etc...
So daughter comes over in the evening, I am already working my shift in the office (right next to bedroom) I hear her talking to him, then BANG... he had soiled himself in bed, she was trying to assist him up and into fresh clothes, he pulled back not wanting her to touch him, and he fell, yet again. EVERY day he is falling.
Stubborn as a jack*** for sure.
She did stay to get him back to rights and even cleaned the kitchen for me while she was here. Plans on being back on Thurs.
So glad she was here today.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
Joined: Jul 2009
Posts: 280
CMMoore Offline OP
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Posts: 280
On a side note ladies and gentlemen. I am terrified. Regardless of the strong front I try and maintain. I am so scared. I find myself crying more and more often.
I thankfully have no work today (wed) and I will get to get out of the house with Matt for a while.


CG to my husband, Matt. Dx June 2009 Stage IV Oropharengeal SCC right tonsil primary with distant metastases. Rad to neck- Surgeries to lungs- Every avail chemo - ran out of options Jan 2012, called for hospice help Feb 2012, at rest March 19, 2012.
Joined: Feb 2007
Posts: 790
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Sending you love and strength. I sure wish you weren't going through this awful experience. Hoping some how some way you will have some relief. I am glad the daughters are now more aware of the gravity of this situation. I am hopeful that they will now realize that they must support you both during an extremely difficult time. It is hard in your 20's to have to face such an intense situation - none of thier peers are likely going through this so they have no idea how to conduct themselves and for them it is just terrifying and frightening I'm sure. This is how I felt when my mom was very ill and passed away in my 20's. It was very very difficult and sad - almost to a paralyzing degree.

xooxoxoxoxoxoox KATE


Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor

Finished all treatments May 25 2007
Surviving!!!
Joined: May 2010
Posts: 638
klo Offline
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We are too hard on ourselves sometimes and maybe a few moments of "weakness" within our trusted circle, will not only allow us to share our fears but also give others permission to share theirs.

Of course you are terrified - you wouldn't be human otherwise, You bear more burden than anyone else. If the added stress of staying strong on top of the stress of the current situation isn't enough, you also have to deal with the fear of the future which at times can feel like the greatest stress of all.

If you can't do it with trusted family member then do it with your hairdresser but find someone who will listen while you let it "all hang out". Everything. You will be amazed at how your perspective will return after you let the torrent of words, fears, resentments and tears out that you are holding back right now. If you can find someone prepared to hold you until you quit crying too, all the better.

My saviour was a work mate from 500 miles away who would ring every couple of weeks to check up on me. And every time she rang, I thought I would keep my act together and not rave on like I did last time. And every time, I would rave on for another 2 hours, just like I did last time. And every couple of weeks she would ring again and let me rave on again. Now she is the one in trouble, and I ring her every couple of weeks to check up her. And SHE raves on for a couple of hours. Do I feel resentful or think less of her? Absolutely not! I am grateful that I can pay her back and also a bit flattered that she knows that she can be honest and that I will not let her down.


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
Joined: Oct 2011
Posts: 805
KP5 Offline
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Christine,
If we can't be honest on here then we are not serving the purpose for being here. Please know that our saying you are teaching us or are our hero doesn't mean we think you aren't struggling. We cry when we read your posts so we know you are living hell right now. We just want you to know that you are showing us that it can be handled and we aren't alone should this happen to us.
So glad his daughter was there to witness things first hand. That should open some eyes and make it easier on you. Physically anyway. Emotionally, just hang on. I wish I lived close by to give you a real shoulder to cry on, but I am here.
Love to you,
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Posts: 2,671
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I wish I could be there, too, Christine - to give you a big hug and try to make things easier for you. I'm so sorry about Matt's falling. . . he is probably just trying to assert his control over something, when so much has been taken out of his control. It's good that the daughters have a better idea of what's happening and can help. We are all here anytime you need to vent or cry or scream and share your pain and frustrations. It would be good (as Karen suggested) to find someone close by with whom you can just let go and release some of the pent up feelings. . . .maybe the hospice people or the doctor who might be able to give you meds to help you get through the difficult days or moments? Please come back here often so we know how you are doing. Sending you a great big hug. . .


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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