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#179673 04-28-2014 03:34 AM
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Heike Offline OP
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I would like to take the opportunity to say thank you forum members as well as the forum itself. I couldn't manage without it.

If you don't mind I would like to use the forum to share my experience and to find some support.

First day of treatment. 6 hours are required to complete treatment. And that's without seeing any specialist.
What an emotional day - traumatised - and still is. NOTHING could have prepared me for this.
Seeing your loved one getting 'poisoned' and then 'grilled' was harder than I thought. I can't stop crying, even now. While I was busy organising our family life, appts , food, clothing, meds I was fine but now I'm a mess.
Maybe it's letting go �

Simon was scared - but not displaying any emotions. He kept apologising for having done this to the family - as if it's his fault ???
He's still smoking - it does worry me and kind of hurts me that he hasn't got the drive to stop. He knows about all the risks. I just don't get it.
He's been suicidal for many years now and life has been difficult. Doesn't he want to get cured? He said the 'spirit' has left him and he's waiting to die.

It is so difficult to deal with a mental and physical illness at the same time.
And our journey has just begun � the forum posts have prepared me mentally -somewhat - as to what is going to come but to support someone who doesn't have a drive to live is so draining.



Heike

Working caregiver of my husband (51) Simon

03/2014 oropharyngeal cancer, stage IVB, T2N3M0, HPV 16 +
04/2014 Neck dissection - 39 lymph nodes removed, one node positive greater than 6cm, tumour in tonsil reaching into soft palette
28/04/14 begin of treatment
33 x RADS 66 Gy, 33 x chemo cisplatin 13mg each
29/04/14. pick two lines
12/06/14 finished treatment
09/ 14 Pet scan clear

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Heike,would it help for you to tell him that since we can't go back and live our lives over, it is meaningless to say it is anyone's fault? We just need to move on. It is a better use of his and your energy. There is so much going on with new approaches to cancer treatment and new drugs, one never knows.

Good luck and hugs to you.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Posts: 40
Heike Offline OP
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Very well said Gloria.

Sorry for having sounded 'harsh' but I guess it was all coming out. Both illnesses have a huge impact on the family and everyone seems to be suffering.

Today was a much better day - emotionally. We had a nice family dinner and were able to talk about a few things.

Simon had his pick done - 2 lines.
We have also learnt that he's going to have chemo 33x as many times as rads.




Heike

Working caregiver of my husband (51) Simon

03/2014 oropharyngeal cancer, stage IVB, T2N3M0, HPV 16 +
04/2014 Neck dissection - 39 lymph nodes removed, one node positive greater than 6cm, tumour in tonsil reaching into soft palette
28/04/14 begin of treatment
33 x RADS 66 Gy, 33 x chemo cisplatin 13mg each
29/04/14. pick two lines
12/06/14 finished treatment
09/ 14 Pet scan clear

Joined: Nov 2006
Posts: 2,671
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Heike - Glad to hear that today was a better day for you and your husband. During my son's Tx, I always grabbed eagerly at those moments and they helped me to keep going.

There were many times though, when I doubted my own sanity and ability to help my son getting through his treatment. He had been hospitalized for suicidal depression even before the discovery of his cancer. Seeing his suffering and how he just wanted to give up, I tried giving him all manner of reasons why he should keep fighting the cancer beast, even to how it would affect me (his mother) if I were to lose him. I couldn't bear the thought of losing him. Nothing worked until I mentioned his 5-year old daughter and how it would be devastating for her to lose her father. It was then that he started to fight and survive. Everyone is different. what works for one may not work for another. But as a caregiver, I think - "Whatever works, DO it!"

As for guilt over the past actions which may have caused his cancer - nothing can be done about the past. It's over and done with. So forget the apologies - what's important now is: "Where do we go from here?" I'm not a smoker so I cannot begin to know how difficult it is to quit but from what I've observed, for some it may be a lot harder to do than for others. There are ways to do it and they bear investigating. In life, for anything challenging, it is overwhelming when looking at the total picture from beginning to end, - but if we can just take the first step and keep going to the next step, then we've done something positive. It's ok to fail because we get many "do overs". "Just Start" is a lot easier to do that to contemplate the whole journey.

Being a caregiver is a tough job but to be able to help your husband, you have to make sure and take care of YOU and your physical and emotional health. Caring for your husband, your children and your job is a lot to handle. Lots of caregivers have had to talk to their doctors about managing the stress with meds. When relatives or friends ask "how can I help?" be sure and have a list ready to give them. Hope you continue to have many good days. Just start.


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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Heike, don't ever apologize for allowing your frustration show. We have all been there. We know what it feels like when we seem to be losing control over the situation. Caregiving is hard, hard work.

Do you have a hobby that can focus your mind and fill in those moments when you are waiting in the hospital, or when your husband is asleep and you get a few minutes to yourself? I knit -- mostly socks because they are easy to carry. Even now, when I go with John for his infusions of the trial medication, I always have a pair of socks that I am knitting with me. By the way, I have found that knitting is a very good conversation starter. Every time I pull out my knitting, the ladies in the waiting room will come and talk to me. One gentleman too, one time asked me in the elevator, "You are the lady who knits socks, right?" and then he proceeded to tell his wife how amazing it was that I was making socks with only four needles. She wasn't pleased because she said,"I did that too." Apparently he never noticed, ha!!

Last edited by gmcraft; 04-29-2014 01:53 PM.

Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Apr 2014
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Heike, this is a safe place to vent, no one is here to judge, were all here to support.

When my husband went through treatment it was up and down emotionally the whole time, you just gotta keep going, just take it a day at a time (focus on trying to get him to eat/drink as much as possible).

Do not forget that you have to take care of yourself too, not just your husband. When you are overwhelmed take a few minutes for yourself (as corny as it sounds I used to take 10-15 mins when I felt overwhelmed and find something on youtube that made me laugh, I know of others that go for a quick walk, or even yell into a pillow, call a friend to talk, or come post here even, etc)

I know your husband is still smoking have they tried anything to help him quit? My husband could not quit on his own he took Rx meds to help him.


~Trinity


CG to Chris
DX stage IV tonsil SCC HPV18/16+ T3N2bM0 5/12
PEG and 4 teeth out 7/12
RAD 35x, 3x cisplatin 8/12
treatment finish 10/12
PET clean and PEG removal 11/12
PET lung node 3/13
failed node removal 4/13
PET lung node 6/13
Lobectomy DX SCC lung new primary Stage I 7/13
CT clear 10/13
DX ORN 12/13
CT clear 1/14
Current list;
Dry mouth, dysphagia, nerve pain, ORN, spinal stenosis, dental caries, reflux, aspiration.
Joined: Apr 2014
Posts: 40
Heike Offline OP
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Thank you for your ears, compassion, advice and thoughts.

Re smoking he's been given nicabate patches, now he smokes on top of them. No matter how much we tell him that's wrong as he's doubling his intake, he keeps smoking.

Day 4 and he is already struggling to eat anything. He simply refuses to eat since yesterday. I 'forced' him to drink one of Christine's milk shakes per day but that's it.
Due to daily chemo I know he gets a litre of fluids via drip but other than that no other water.
It worries me but there is little I can do to make him eat and drink if he hasn't got the will.

He's developed radiation parotitis, a version of the mumps and has inflamed saliva glands already.

He's already expressed stopping with the treatment as it is getting difficult. On top of that treatment is like a full time job, that means he has to do a lot and take responsibility. He's never had this kind of responsibility, so it adds to his dilemma.

Trying to stay positive. Looking forward to the weekend and hoping to have some me time or spending time with the kids.

The radiologist is still of the opinion that no PEG is required and he should try to go without it.

The kids are struggling a lot as everything revolves around Simon which isn't really new to them. Mental illness has been cruel and they haven't had a father for the last six years.
Tonight I'm off picking my son up as he's got drama productions 3x a week. I must admit it is sooo difficult to find a balance and not to forget the kids. After all their school and uni lives continue and have commitments.



Heike

Working caregiver of my husband (51) Simon

03/2014 oropharyngeal cancer, stage IVB, T2N3M0, HPV 16 +
04/2014 Neck dissection - 39 lymph nodes removed, one node positive greater than 6cm, tumour in tonsil reaching into soft palette
28/04/14 begin of treatment
33 x RADS 66 Gy, 33 x chemo cisplatin 13mg each
29/04/14. pick two lines
12/06/14 finished treatment
09/ 14 Pet scan clear

Joined: Jun 2007
Posts: 10,507
Likes: 6
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Please also remember to find time in all this chaos to be kind to yourself. You have the weight of the world on your shoulders. Even if you take 10 minutes every couple days to walk around the block it would help to clear your head.

As far as the kids go... try finding helpers. Anyone who has offered their assistance to you during this difficult time, now is the time to take them up on it. There are a million things they could do to help that would take some of the pressure off you. Cooking dinner for your family, picking up the children once a week, picking up prescriptions for the pharmacy, even walking the dog, a play date or doing a load of laundry is helpful. The children can even get their own responsibilities that would help.

If your husband is already talking about quitting be prepared for a real battle as the end of treatment comes. Unfortunately, treatments get progressively more difficult as time goes on. I wanted to quit too but my son and nurse refused to allow it so I had no choice but to finish mine.

Ask for hydration at the chemo lab to help avoid dehydration from his refusal to drink water. This will catch up with him and he is going to feel awful.

I honestly dont know how you manage with your husband struggling against everything he is supposed to be doing. Its hard enough to get thru this in the best situation, but to avoid everything he should do will only make it 10x harder for him. This will soon take its toll and he will begin to really feel lousy. This is all part of getting rid of the cancer. Its a fight, either he wins or the cancer will. I wish I could somehow help your husband to understand how serious this situation is and how he needs to step up. I know his mental ability prevents his fully understanding everything.

I wish your husband could get a better handle of his tobacco use. By continuing to smoke its causing so much damage to his body. I know how hard it is to quit. I hope he will wake up and decide one day that he is stronger than the tobacco and throw them away for good. Im sure he wants to be around for to watch his children grow up. Smoking while on the patch could be harmful.

Best wishes!!!



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Jun 2007
Posts: 10,507
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PS... Here's a tip. I put it on a separate post in case you want to try it.

Try printing out some posts you want him to read and 'accidently' leaving them someplace where it makes it appear as you did it for your benefit only. Maybe if your husband read some of the advice you were given it would wake him up. It kinda reminds me of how my children would occasionally become stubborn and not follow my directions, only to end up doing it later anyway. You know how kids hate their parents to be right. This has worked for many families over the years.

Good luck and stay strong.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Oct 2012
Posts: 1,275
Likes: 7
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Heike, if your husband is not taking in enough fluids, he can quickly become dehydrated. Keep an eye on the colour of his urine, if the colour gets darker, he is dehydrated. He will feel extremely bad when that happens. My husband got lightheaded and literally passed out in front of the doctor. See if you can arrange for him to get hydration at the radiology clinic. It will take several hours each time, but he will feel better and you can take the time to go Nd run errands if you need to.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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