Introduction

oldvampswyfe · February 2016

I'm oldvamps wife, we are thrilled to find such a wonderful support system here. It's hard to understand head and neck cancers, they aren't like other cancers. I lost my dad to bone cancer in 98, my sister to lung cancer in 14 and step dad to cancer and old age in 15, then oldvamp was diagnosed 5 1/2 months after my step dads passing with stage 4 metastatic base of tongue...cancer isn't an uncommon word in my family. So we maybe kinda were prepared for the process, but in reality we weren't. We tried to find a local support group, but to our shock there were none. So we were left pretty much winging everything.

The destruction of taste buds, salivary glands and the olfactory system was shocking. No one told us we needed to see the ENT oncologist during the treatments..just the rad and chemo oncs. No one told us about base of tongue excersices, except use it or loose it. They pulled him off of the anti-depressants, knowing he was depressed, without represcribing something else. He gave up the last week of treatment and wanted to die. It was rough. It took several days fighting with the insurance companies and a lot of emotional turmoil to get him back on anti-depressants, but he survived. I hope no one ever has to go through that type of nightmare.

Things I have learned: Never give up, its just a great big giant experiment, day after day..you don't know what can be tasted, swallowed, or tolerated. Tempers flare, but its really not aimed at you. As a caregiver, your path is just as rough as theirs only in a different way. Be patient with yourself, love yourself as you love the one you care for. It's a hard path, but know its worth it in the end.

Thank God for forums that we can come to, vent and gather information. Thank you for being here.

wmc · February 2016

Welcome to the H&N Group

In some ways it is harder on the caregiver then the person. You feel his pain, even if he may not have any pain that day. You want to just do something to help and make everything all good, but can't. You can see him getting sad, scared, and even mad at times. Yet there is not much you "think" you can go.

Just let them know you too are scared, and you both need to let the other know how you are "Really" feeling. Together you both can and will get through this. It is a long journey, but together, it can be done.

Bill

swopoe · February 2016

Hello. I am a caregiver too.

Hello. I am a caregiver too. My husband was diagnosed with stage I oral tongue cancer in 2015. He had surgery, rads, and chemo. I know too how hard it is to be the caregiver and watch the one you love with all of your heart go through this terrible disease and its treatment. This board has been a godsend and I am glad you found us. Hugs and prayers to you and your husband.

CivilMatt · February 2016

welcome

oldvampswyfe,

Welcome to the H&N forum, it is nice to meet you, I met the old vamp last night.

I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux),

While I did have and still do have an ENT there were still lots of surprises. I remember when my radiation oncologists told me I would lose my taste buds and it did not make sense to me. How can I lose my taste buds?

Hopefully, the worst is behind me and I can continue to make improvements. Which I am. Today compared to almost 4 years ago is a world of difference. It truly does get better.

Good luck to you and the old vamp.

Matt

hwt · February 2016

swopoe said:
Hello. I am a caregiver too.
Hello. I am a caregiver too. My husband was diagnosed with stage I oral tongue cancer in 2015. He had surgery, rads, and chemo. I know too how hard it is to be the caregiver and watch the one you love with all of your heart go through this terrible disease and its treatment. This board has been a godsend and I am glad you found us. Hugs and prayers to you and your husband.

Well stated

This disease is every bit as hard on caregivers as the patient. I would not be where i am today if it had not been for a very caring husband and my family.

yensid683 · February 2016

Caregivers

Do have it worse than the patient, they worry, they want to do all they can to help, and at the same time they hold all of their feelings in so that they won't add to their loved ones burden.

Caregivers, do yourself a favor, talk to us.

We know what you're going through and it will help both of us to talk about it. Even if there is no solution to the problem at hand, talking about it helps resolve the fear and uncertainty.

I owe my wife more than I can ever repay for all she did for me when I was in treatment, her care, patience, warmth and at times frustrations helped keep me focused on the goal of recovery.

Of course now that things are better, the hyper vigilance for any little cough or sore throat gets a little old....

oldvampswyfe · February 2016

thank you all

for the warm welcome.

The words each of you have written are all so very true.

Its hard being on the other side of this condition as a caregiver. I wish I had joined this forum last June in 15, which was right before we started treatment (it would have made things easier). We thought we had a solid support system in place, but they all ran like scared little rabbits due to ignorance (when they saw the fallout) of the "real" problems of head and neck. My best support were by phone calls to Arkansas, Vermont and Pennsylvania, where my closest friends live (oldvamp amd I live in the Pacific Northwest)...these dear friends kept me sane.

I was up all day and most of the night researching everything I could find out about it; diets, side-effects of drugs, you name it. I was scared, tired and frustrated (sleeping in a recliner in the living room, waking at every sound). It was a constant battle staying on top of everything, since he had a case of chemo fog/brain from day one, along with sundowners. We dealt with the salivary, taste bud, hearing issues to the best of our limited abilities, he couldn't remember anything; where he was, what he was doing, what part of the day it was, nothing.

I spoke to the doctors, kept a journal of everything; weight, food and water intake before he finally conceded to the PEG tube, then during the tube feeding time and after the PEG was removed, I had to monitor all meds (he tried to overdose himself because he kept forgetting he had already taken them (In most cases he was having adverse reactions to the drugs themselves, so I took them away, it was hard and the choices we make sometimes were harder), making sure he made it to his appointments, talking to the oncs while he stared at the ceiling oblivious to where he was and his surroundings.

It was an interesting time. We call it "the summer that was lost".

Many of you have had worse. So I thank you again for your warm welcome, kind thoughts, and encouragment. We hope that we can do the same and help others through these times.

Hondo · February 2016

Glad you found us

Hi and Welcome to the family, there are a lot of things the doctors don’t always tell us. That is one very very good reason why to come here to CSN where you will find others who have been there and willing to help others along the way to being a survivor.

Tim

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