Hi,
A little background first. I introduced myself on the relevant thread yesterday. My husband, Eric, had half his palate removed, 4 upper teeth and cheek pads, plus all the lymph nodes on that side, Nov 2010. Dealing with it was something I took in my stride - determined to see him through surgery, then Radiation (Mid Jan - Mar 2011) and now through rehab.

I went to every appointment with him. I saw the wound. I helped him learn to remove the obturator to clean it and the wound. It didn't bother me. Right through radiotherapy I was there, encouraging and supporting him. His wound was checked daily, so that any burns could be managed properly - so seeing and hearing him without it was something I dealt with.

What's changed? I wish I knew. We used to be a couple who could stand side-by-side brushing teeth, etc, each day. That's gone. I can't bear to see the obturator, soaking in its little dish. I can't bear hearing his voice, altered by the hole in his head. In fact, both things now make me vomit. I gag at the sound of his voice without it - and if I happen to walk into the bathroom and the obturator is sitting in its 'bath', I throw up. I can't stop myself.

Has anyone else had this happen? To me it's totally illogical - why feel this way when (to our knowledge at the moment) the worst is behind us? Why not react in this way when it was all fresh, all new, all raw? Where has my coping mechanism gone? How do you deal with this if you feel the same? I still feel guilty for the repulsion it makes me manifest - it's a really unwelcome reaction and one I need to get past.

Life will never be the same, I know that - cancer has taken care of that - but I'd be a lot happier if I could put this obstacle behind me and not be hampered by it. Is it becoming a phobia? Or is what I'm feeling a 'normal' part of rehab (for me, as the carer)?

Thanks.
Liz

After you get some feedback from others who may have been through something like this, I would talk it over with a professional. My guess is it is a symbol of something awful that you have been through, maybe a little post traumatic stress rearing its head now that you aren't in the thick of the battle. No shame in that. Best of luck.

Liz,
I have not been through what your husband has or what you have experienced for that matter. My husband and I feel like we have been through the ringer however. It is difficult for caretakers as well as the patient. I do not find it abnormal that you are feeling the way you do. I think it will get better for you. Apparently when you were going through it all you were able to block out the reality, and now you are facing the loss of what used to be. Everyone on this site has that feeling. You have a visual reminder, the obturator, that I do not have.

I echo the advice previously given. "Talking" it out here should help. If it is not better soon you could seek out counseling. I think it is all very understandable.

Best,
Anne

Liz, I sm so sorry you are struggling with your husbands after effects. I see many caregivers go thru so much with the patients always keeping a brave front. To me it sounds like the horrors of this horrendous disease have finally sunk in. It is not east when you are faced with reality that your husband will never be the old person he was. Sure he can come close but it wont ever be the same.

Many caregivers seek out therapists or some professional guidance to manage their coping skills. I cant imagine how difficult it is to watch someone you love with all your heart change into someone different all the while, you are keeping a brave face. To me, caregivers are angels here on earth! I wasnt given the luxury of having one to help me get thru everything so I struggled. Your husband is so lucky to have you in his corner. I always advise caregivers to always make a few minutes every single day to clear their heads, even if it it only a walk around the block or a long hot shower. This helps them to stay balanced in the whirlwind of emotions and stresses. I applaud the selflessness of individuals who are able to carry so much on their shoulders for many months. Now is time you must begin to care for you! Dont hesitate seeking some professional help, your husband may need some too. Its a huge adjustment for both of you learning to live with new challenges. Donr be afraid to use any tools offered even anxiety meds. It will help you to help yourself.

(((HUGS))) and best wishes with everything!!!

Liz

"Phobia" is too strong a word IMO, instead it sounds to be like garden variety "conditioned aversion" and "stimulus generalization". It's well documented in many studies, mainly in food aversions for radiation patients. In plain english, your brain has now associated the obdurator with the entire cancer ordeal which shows up in the physical response of vomiting.

While I can not offer up a solution (outside of getting a covered container for the soaking obdurator so you don't see it), I though it would be comforting to you to know that you are not experiencing some major mental issue but an all too common aftereffect. It happened to us. My RO was a big booster of Burt's Bee Balm to put on my face and lips. My caregiver wife pulled off my Viglilon hydrogel dressing with sticky rotting Eribtux dead skin in bloody patches twice a day while I reeked of it. Yet after the TX was over , the slightest smell of Burt's bee balm would make her nauseous and ill. She had associated it with all the terrible pain. Even now, almost 5 years later, she can't tolerate it.

Amazing how our brains work.
Charm

Up to his point you've been running on adrenaline, you're through the worst of it and want to get back to the best normal possible. This is a reminder... Of all that you went through. Try not to punish yourself for this - sometimes in the moment we do what we have to to get through... It may be something you've never fathomed doing or would normally be repulsed by. Do talk to someone... It will help you deal with it - hugs! We all have our scars - even the caregivers.

Liz,
Phone the Cancer Society and discuss this with them.
They will organise some counselling sessions for you at their expense. You do need to talk about this and come up with some strategies to help you deal with this.
Tammy

Hi Liz,
I agree with everything that has been said here. Please know there is nothing wrong that can't be fixed, but you probably do need to see someone to talk it out and get some coping tips. I know that there are times I look at Kevin's rad mask or happen upon some of the feeding tube apparatus and I get physically sick. I don't vomit, but probably could. It is true that we, as caregivers, ran on adrenaline and now we are facing life after and it is very, very hard. I know I am struggling with a little ptsd or something, because sometimes the fear is so great I have melt downs. I talk to folks on here about it and can usually move on. I am also caring for my 86 year old mom and 3 kids so I am VERY busy. If not for that I would go stir crazy!!
We are here for you and can completely relate.
Stay in touch.
Blessings,
Kathy
PS...It sucks and it's ok to scream, rant, cry or whatever else you need to do to get the anger expressed!! We "get it" cuz' we've been there!

Thank you all.

Tammy - the Cancer Society had arranged a series of workshops that we were both to attend - then (just 4 weeks ago) I collapsed and was hospitalised (first time in my life) suffering septicaemia. I fought for my life, on a drip for 6 days. So we missed the first workshop and I'm not strong enough, physically, to go to the second. BUT we will enlist again, when they next do the loop.

I appreciate being able to come and talk to you all - because if I break down, as sometimes happens, being fragile and emotions quite raw and brittle, I can still make myself understood and not fight to control tears. Talking though the rawest emotion isn't easy for me and I hold back the tears and clam up again - so don't tend to get anywhere in a face to face situation. So you're being my counsellors for the time being and I truly appreciate that. Ross (Yates, from the board here, a friend of mine on Facebook) was the first to reach out to me, so losing him has been hard. He'd been on the other side of the equation and knew something of my struggles - and he let me know it was okay to feel angry about things, that my responses were alright and 'normal'.

Thank you again. Bedtime for me.

Liz, OCF is a great place to come to get moral support and a place where we all understand whats going on. We get it! I also knew Ross. He was a great guy! Im so glad he had reached out to you. It was thru him that I saw your post on his wall. Ross found OCF a while ago and quickly made several friends with his great sense of humor. Because of Ross, you will now have many new friends to turn to when you are low. Of course we are not medical professionals but we know a whole lot about oral cancer and what it can do to not just your body but also your mind. Of course no one could ever take the place of your friend Ross but, we still will be able to give you some comfort with compassion. I would still recommend seeking out a professional when you have recovered. They can help you in ways we arent able to.

(((HUGS)))

Liz, things have really been stacking up on you. Your husband, your health and your friend. Your world has really gone nuts. Sounds like you need to do some screaming and crying. But you also need some rest because sepsis is SUCH a big deal.

I'm no mental health professional but if you are becoming conditioned to certain things (obturator/vomiting), you might need to be "unconditioned". I think they use meds and sometimes hypnosis for that sort of thing. I'm sure there are elements of cognitive therapy (talk/thinking) but also elements of pure behaviour/ response. Another approach would be to try to avoid it and hope it passes while you hash out whatever else you need to hash out here.

At the root of everything though is you have been though a huge ordeal (and don't we all know it), and some days can be counted as successes if all you do is breathe, eat and maybe take a bath. We can't be down on ourselves when we fall to our knees once in awhile. And my guess is that we only fall when we have time for it -- like during a calm patch.

And a word to the wise, watch out for yourself in 6-8 weeks time because you've just lost a friend. It can get unexpectedly hard once the fog of that starts to lift, especially if those around you expect that time has passed and it is all okay again.

Sleep well.

Hi, Liz
I had what turned out to be RA/Lupus flares off and on throughout my husband's diagnosis and therapy. But it didn't really cripple me (enough to see a doctor) until he was about six months out of treatment and doing quite well. Intense physical pain, insomnia, really embarrassing crying jags. I also felt completely imcompetent. Once my autoimmune drugs kicked in, I felt like my life had been handed back to me.
I wish you all the best in your own return to health. You are a wonderful person and caregiver, and I feel sure that things will turn around for you.