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#198764 07-25-2019 10:30 PM
Joined: Jun 2019
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"OCF across the pond"
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"OCF across the pond"
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This is hard for me to write but I'd like some help on how to get my husband to be more supportive in a constructive way.
I love my husband a great deal and understand how scared he is with my cancer. He's been there to hug me, wipe away my tears, tempt me with food when I just want to give up. He came to my first 20 appointments. He's ca;med me down when I was too scared to go to an appointment.

Recently things have changed. HIs workload has got more stressful - he works from home so we are 24/7 with each other. I suggested that he doesn't come to all of my appointments so that we can have a break from each other. It was also a bit of a diversion from me as he gets so stressed out getting ready for my appointments that it was making me stressed and I'm already on BP tablets to reduce my high BP.

He keeps saying he doesn't feel like he's doing enough, and so I have to reassure him that he is. He said he wanted to come with me to my next appointmets as it doesn't look like he's being supportive when I go into my place of work for a meeting or just to say hi. I tell hom of every single appointment, I even send him a calendar invite so he has the choice. He chooses to work,

So yesterday he came to my 2 appointments. He got frustrated when I told him what time we were leaving in the morning, as he thought it was an afternoon appointment. He then got annoyed that the clinic was running an hour late (he doesn't seem to understand that hospital appointments rarely run on time) so much that he said we should leave the clinic and go onto my next appointment. When we got to my next appointment, it was also running late and my time over ran by 2 hours.
All day I could feel his frustration buildingbecause he had to be somewhere in the evening.

Now at 5am this morning I woke up coughing. I wemt to the bathroom and coughed up clotted blood and then lots of old dark blood. I gave my mouth a rinse, coughed again and some fresh blood came out. So I woke him up and told him I think we need to go to the hospital. To be fair he didn't ask why, he just started putting on clothes.
I'm still in the bathroom, rinsing out my mouth with cool water to get the bleeding to stop so that I can try to see where it's coming from as I can't feel any pain and I don't feel weak (like I did last time this happened). The bleeding slows down to a trickle and so I told him to go back to bed. His attitude was not caring nor compassionate. There was no concern for me, it was of an annoyed person who feels they've been woken up for no reason at all.

I popped some gauze into my mouth to clean up my tongue and everything feels OK, there is no more blood. I will phone my nurse today to let her know and I've got an appointment in hospital this afternoon.

My husband is coming with me this afternoon and I'm dreading it. I'm dreading today as he's going to be tired and grumpy, which means he'll get frustrated quickly and lose his temper. He is not violent, he's just shouty and sweary at whatever he's trying to do.
I am also concerned that he will be the person looking after me when I have my surgery. We had a holiday planned for the end of August. I said that if I'm in hospital then he should still go (it's a long weekend camping and would be great to help him de-stress) but it looks like I'll be coming out of hospital then, so he won't be able to go. When I told him that, he was clearly upset that he won't be able to go on holiday.

I feel like I'm walking on eggshells around him. I feel like I can't tell him how I feel unless I become cold and brutal. I feel like I have to apologise for having cancer, spoiling his plans and adding stress to his life.
Him working from home and my being at home is taking its toll because we both need a break from each other. We're going away tonight for the weekend, which I'm really looking forward to, and we're going camping with friends to a festival thing next week - but I feel I should cancel this one as it will also bring it's own stresses which I'm not sure I can take.

I love my husband very much, but at the moment I can feel myself disliking him as I just don't think he knows how to be supportive without seeking constant recognition for doing a good job.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Dizz_zzey #198781 07-28-2019 01:20 PM
Joined: Jun 2019
Posts: 62
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Posts: 62
Hi Dizz_zzey, it’s Mokie. This is a hard one. There’s no way of knowing when our loved ones get to the point of compassion fatigue. Some can be there for the long run and others start breaking down before things even get started. I assume since your so young that he is too and may have few coping skills at this time in his life to deal appropriately with this heart rendering situation. Just as we can’t hold ourselves accountable for how we are going to handle such an ordeal, you can’t expect everything he does to be of the norm either. He may not even be able to explain his behavior if asked. So, maybe it’s time to incorporate a standby support system or person that can be there for you. I know it’s expensive, but even if you could hire a caregiver for the first couple days and family members could offer hours here and there. Maybe he needs the break to be able to regroup back to the person he needs to be to support you. It’s so easy to be angry with the people available to us and even easier to get mad and push away the only support we have. Something to think about. I’ll always be here to listen, but I know moving forward you will need so much more at your bedside. Give him a chance. He may surprise you. Being angry just breaks us down more.


SSC Lt sublingual tongue; Age 62
Positive biopsy 20June2019
Staging done 2 Jul : Stage 1
Quit smoking 15 years ago; not a drinker; no HPV
Pet/ CT 6Jul2019 : Negative. Not even the Lt tongue lit up.
Partial Glossectomy 22Jul2019
Mokie #198790 07-29-2019 09:18 AM
Joined: Aug 2018
Posts: 345
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I was a caregiver so I have that perspective and will share.

I don't even have a relationship with mine so having to take care of someone who has treated me badly for a couple of decades was not my idea of fun. But I drove him most of the time and when I could not, I found someone else. I even had some drive to get a break along the way. I needed to get away from it all even for a couple of hours.

He constantly battled me saying I was overfeeding him (8 oz total) when I took over because he literally starved himself for 2 months and lost 60 lbs. Argued every single time, every single day. My stepson (his son) was there one morning and he pushed both of us over the edge. We walked out and said we were done. You can only take it for so long. That was about the end of radiation but his problems were feeding tube more than anything else and continued for months. So I let him take care of himself and refused to clean his syringes or do anything else. I did drive when he was being put under or had doctor's appt because the chemo really destroyed his mind for quite awhile.

I am so anxious about medical stuff and here I was in hospitals every single day listening to heavy duty info. But I was a trooper and am still dealing with the anxiety of being in those places. I had a horrible allergic reaction to all the chemicals coming out of his breath and body. I took a toll physically as well as mentally.

So at the end of it, what does he tell people? No one supported him during treatment. Well, buddy, I guarantee no one is going to if you go through this again after making that statement when he was given so many gift cards for gas, cash, drivers, etc.

Just telling my perspective hoping it helps someone who is on the other side.

For you, I would say find a friend you can depend on! I set up my support team of 5 good friends before treatment started. They took me for coffee, lunch, or just to listen and text/call and see how I was doing. Your husband may not be the strong person you need right now. Best wishes to you.....


Spouse of 58 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
1/2020 diagnosed with cancer near TMJ
4/2020 chemo 5 days every 2 weeks
6/2020 proton therapy
9/21/2020 cancer free
Dizz_zzey #198794 07-29-2019 10:05 PM
Joined: Jun 2013
Posts: 346
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I'm going to give a link which I've found helpful for a lot of situations ... it might help for your husband, if he'll read it, or it might not. (I really need to just remember to bookmark it!) It's called the 'Ring Theory' and it's about how to offer support and comfort, and who you get to gripe to, and who can gripe to you. The idea is that the patient (or the bereaved) is the center circle of a series of circles, and can gripe / grieve / request support to anyone outside that center circle. The next layer out might be immediate family ... who can gripe to anyone outside their circle, but NOT inward (to the patient, in this case, you). Friends and other caregivers might be your next circle. And so on. Anyone can fuss outward, but no one can fuss inward. Only comfort and good stuff goes inward. It's a really helpful way to look at things, and to remind us to see where our support network might be lacking, too. The original article is this link, I think: https://www.latimes.com/opinion/op-...407-silk-ring-theory-20130407-story.html

If you read it and like it, maybe your husband would be willing to read it and discuss it with you, and help figure out who HE can talk to when he needs support / comfort / praise for doing well. That would help both of you. We didn't have this article when I was going through treatment, but we did have a talk about who my husband was going to turn to, when he needed to let off steam and frustration, to make sure he had someone, and so he knew I knew that it would be rough on him as well as me. It helped, some.

Lots of ((hugs)) to both of you, but especially you. ((extra hugs))


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
KristenS #198795 07-30-2019 01:33 AM
Joined: Jun 2019
Posts: 244
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"OCF across the pond"
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Thank you everyone for your support and guidance.

We had a weekend away together where we had fun, dined out, did things as a couple on holiday.
We talked a little bit about my cancer whilst we were away but decided to wait until we were home, where we talked quite openly about our worries, fears and stresses. That's really helped clear a lot of unsaid, overthinking stuff.

He has a friend staying with him for a day, whilst I'm in hospital having surgery, so that he's not on his own. This is a massive weight off of my mind because he has arranged this on his own.

The first few days I'm out of hospital he's completely booked off of work, which is great, then my Mum is coming over for a few days as he's going away for a couple of days for work (sadly unavoidable) and then I'll have both hubster and Mum for a day or 2. Then a friend is coming over to help when Mum goes back. So I'm feel quite looked after and so is he smile

We're away this weekend with some friends, which will be great as it'll just continue to help us both unwind further.

Thank you everyone. You have all been so helpful xx


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Dizz_zzey #198799 07-30-2019 08:28 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

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Posts: 10,507
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Im sure you feel so relieved having discussions with your husband about your cancer. Ive often heard patients and caregivers say cancer has brought them much closer with their spouse.

You are sooo organized!!!! Thats GREAT!!! Im sure this will be a huge help to both your husband and mother down the road. I especially love how you and your husband are spending quality time together making for some great memories you both will be able to look back on and view your cancer experience in a much more positive light.

In the US, many patients who are first going home after a major surgery are able to have a visiting nurse check in on them. Ive used this service myself and found it very helpful and reassuring knowing the nurse would catch anything that was serious enough to warrant a visit to the doctor. The nurse would check and redress my healing wounds and make sure nothing was getting infected. They checked my blood pressure, the picc line, the stitches, feeding tube, etc and although their visits were only anywhere from 15 minutes to a half hour, the visits helped me mentally handle my very long, slow recovery. Maybe thats another option you would want to ask about. Its great you have your post surgery well planned out!!!

Another tip that my son (at 19 who was my caregiver) found to make things much easier for him was to put one person in charge of being the one to notify everyone. This made it so he was not overwhelmed with calls, texts, emails about my condition every single day 24/7. My son passed along every change both good and bad to my friend, who in turn was who everyone would check in with for updates. Just from my couple years on OCF, I had friends from all over the world checking up on me. This can be overwhelming to caregivers who already are stressed enough about their patients condition and worrying about what comes next. This could be something one of your friends takes on where the only person your husband or mother need to pass updates to (besides each other) would be the one person you chose to be everyones point of contact.

One thing I found so encouraging was when I finally was awakened from my medically induced coma after 3 weeks to a big stack of get well cards and wishes from everyone all over the world. I was in very bad shape and not able to focus enough to even read the cards. My son would sit there and read each card to me on a daily basis. Those cards were very special to me when I was at one of my lowest points in my life. I still have that stack of several hundred cards today almost 10 years later! My hospital has a service where anyone could put together a free online card that was printed out and delivered to my room just like how the mail-person delivers the daily mail. Theres been a few others here who have used similar hospital services to send get well wishes. Maybe your facility offers this too?


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

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