Hello all,
I've waited 3 years 4 months too long to reach out.
I guess it's fitting that I choose this day, Thanksgiving, to introduce myself.
An especially hard day for one who cannot eat.
My name is Cheryl, and my husband is Doug. On 8/31/10 my husband was diagnosed with Stage 4 HPV cancer of the tonsil. We were told by our oncologist that this form of cancer had a "good" cure rate. He said it would be hell, but we had hopes it was something we would conquer.
The heartache of the news, well, each of us has been there, you know how it goes,but NOTHING in the world could of prepared us for the nightmare to come., I wished someone had tried.

Before I go into more detail on that, I feel a little back round on us my help.
Doug started this fight as a big (6'5") strong man.
The kind of man that made heads turn when he walked into a room. He owned his own business (sales, which means talking) and was as healthy a person I had ever known.
We had been married 13 years at diagnosis and I swear the man never took an aspirin or seen a doctor in all of those years.He worked out every day, like the mailman, nothing stopped my husband from a workout.
We traveled out of the country often, we ate out, we had friends, and we had laughter.
Today, I feel so much of that gone.

On to cancer.
We started like many, radiation, chemo, surgery.
Then there was the two times he almost died due to the reaction to Ethyol shots (to save his saliva glands).
Yes, it took two times the doctors telling me they might not bring him back this time before they figured the problem out.
We had the surgeries for the med port and the G-Tube.
Then the big surgery that took his tonsil and the secondary large tumor that was growing in his neck; little did I know it was just the beginning of taking my husband piece by piece.
We went through the burning of the skin, the loss of hair and the vomiting out of control, but it was all worth it because we "thought" we had beaten the ugly beast.
Our med team said if we made it the first year clean, we would be on the road to recovery we made it 11 months 2 weeks before our world feel apart once more.
I will try to summarize what followed.
Surgery to remove 30% of his tongue. To tell you it was so awful and painful, it scared us to death. It introduced us to the tracheotomy and ventilator. I didn't leave his side for 10 days. Mind you on some of those evenings when he was chocking so badly on the vent, I just couldn't take my head from beneath the covers. I felt like a coward, but it was so awful watching him suffer.
We were told the were clean margins, he had all the radiation a chemo he could have, once again they "thought" they got it all.
Painfully, heart rippingly so- they were wrong once again.
The awful cancer struck back in less then two weeks. To this day he still has a trach.
The sent us on to a "bigger, better" hospital where they said he probably wasn't HPV just the harder squamous.
He underwent another 16 hour surgery. This time they took 98% of his tongue, replaced it with fat from his belly, the only place left on his withering body that had any fat left at all. They also took pieces of bone,lymph nodes galore and some teeth.
I will never again hear the sweet sexy tone of my husbands voice.
The recovery from this surgery made the others look like a piece of cake.
Once again the words- "We got clean margins, we got it all". Once again they were WRONG!!!!.
We would drive 130 miles three days a week during recovery, each time the medical team telling us all looked good, until it didn't.
The most horrible words you can hear is there's nothing left to do, your husband is going to die.
The wrenching pain on the drive home that day nearly put me to the ground.
They sent us back to our original hospital, for what they call Palliative Care. They gave him 6 months to a year to live. It's been a year and 5 months since that diagnosis of death, we're still here.

So whats the problem?
In 3 years 3 months I have been his only caregiver. He does not take advantage of any help or happenings going on for cancer patients.
He cannot and will never eat again. His Trismus is so bad he can only open his mouth less then a 16th of an inch.
He can talk but just barely, you really have to pay attention.
He hates the new him and has shut most everyone out. I can only leave him for short burst of time, and if I ask someone to come an sit with him he only cancels, getting angry saying he'll be fine on his own.
The treatment side effects have fried his barrier receptors that regulate blood pressure, he has fallen and broken his back TWICE and has fallen so hard he has needed many stitches. In short I have found my husband 4 times passed out lying in a puddle of blood, yet I'm not to say a word when he tries to carry heavy stuff up and down stairs. In his words I need to "let him live".
Does anyone out there find that as hard to do as I?
I have been by his side through every last terrible bit of it. I find it hard just to let him go, knowing full well this could possibly be his last fall?
Did I mention the loneliness and isolation?
It's been two years since I've been touched, kissed or caressed. I know he feels ugly and disgusting and I hurt for him, but I hurt for myself too.
I miss life, is that a horrible thing to say? It feels it, and the guilt gets to me.

Many may suggest reaching out asking for help, and in some ways I have. But today is really my biggest step.
It's hard when people don't understand what type of man my husband is.
I see so many that rally around friends, family, medical staff, support meetings. Many finding laughter and love in spite of the ugly cancer. Nope that's not my husband.
Since he has been diagnosed not a single family member has come to our house. He told them in the beginning he didn't want people to see him that way etc..., and they bought it! In all this time they never said, screw what he wants, we're coming. I just don't understand.
He absolutely hates asking for help and would rather see me work my tail off keeping the house together or stay home day after day night after night being just a caregiver. It's not that he's a bad man, it's just the way he is. Not a single person asked us to join them for Thanksgiving. Doug can't eat, and he hates to be seen, so whats the point right?
Our big day out is chemo, every Thursday once a week for well over a year now, he's had so many I've lost count. They say it will continue until the cancer wins the battle.
I am lonely, I am scared, and my anger gets me every time I think of what was.
With so little time I wish I could somehow bring us back together as husband and wife, friends and laughter, but he's fought it so much I tend to eat my anger and let the days continue as they are.
I hope this wasn't to long winded, and I hope that it makes some sense. So much going trough heart and mind, it's hard to put it proper order.
Thanks for letting me introduce myself.

Cheryl,
I'm so glad you finally decided to reach out. You will find much support and love here.
I'm at a loss for words. You have so much physically, emotionally and mentally on your plate.
I don't know if there is much you can do to change your husband and what he will and won't accept, but you can change some things for yourself. Have your friends come visit you. Perhaps take short walks around your neighborhood yourself and with friends. If you can afford it, hire someone to clean hour house for you.
Not sure if any of those suggestions help you, just really wanted to respond and let you know the OCF family is here for you.

Welcome to OCF, Cheryl.

Your message comes through with absolute clarity and piercing emotion. You have lived with this situation for some time and clearly have learned a lot from others and each other as you have a very good objective perspective on your situation.

I so wish I could offer you something tangible or some insight or some options to explore but you are far more aware and educated than I dealing with your situation.

You did not explicitly mention hospice but I assume that they are fully engaged to support and assist you both. If they are not involved, reach out to them now. There are so many reports of the positive support they bring to those in your situation.

Please do stay here now as many others have a lot of experience to share and help. Don

Thank you for the welcome.
I have contacted hospice, but at this time, as long as Doug is fighting and staying in the hospital system they say not much they can do till he is ready. I am grateful to have found this site, tonight is the first time in a long while that I went to bed not feeling so alone.

Oh Cheryl, I get your story. This disease is just so horrendous isn't it.
Why oh why do our family and friends abandon us ? Just at the time we need them most. I haven't seen my sister for nearly 3 years now. We used to talk for hours every week. Now, nothing. No empathy. No compassion. Yes it is heart breaking. The same with friends. Gone now from our lives.
I sense your own personal struggle and the tiredness and loneliness of coping with this disease and it's life changing effects.
I want to tell you that you are an amazing woman. You have walked every mile of this with your husband. Constantly by his side, encouraging, cajoling, supporting and fighting for him. You love him. But, you have needs too. I hear that. It is so important to look after yourself too. You must make time for yourself, just to breathe and give yourself the strength to carry on as you want to. Is there a girlfriend who you can share a coffee or walk with. Maybe a movie. I do this often. Kris understands that I need to maintain my friendships and continue to live life. I meet girlfriends for walks, coffee and lunch. I also love the time Kris and I spend together. It is good quality time. Are you and Doug able to get out at all? Do try and get out together, it has certainly helped us.
Come here often Cheryl. Just to vent is so therapeutic, but you will also find a wealth of support and advice.
Be kind to yourself and remember, you are not alone.
Tammy

Cheryl - I'm so glad you came here and reached out to the wonderful family that is OCF. Your story of experiences and feelings and raw emotions brought tears to my eyes and I'm usually a very "hold it together" person. Before logging on, I had been thinking of all the "un-initiated" to this disease and was wishing for someone to be able to really tell them what a patient and his/her caregiver are really going through - to try to make them understand and then maybe be more supportive. You have done that so eloquently and with the sweetest love anyone could have for the special person in their life. From others' posts I've seen over the years, there are many survivors who react just as your husband is doing. It is so difficult, especially for one who has always been so in charge of his life and accustomed to being in control. He's grabbing on to whatever he has to keep whatever shred of control he still has. For a caregiver, it is difficult more than words can say to be able to know when to be soft and when to be tough and then feeling guilty when you see the suffering that this horrible disease brings with it. When family members or friends come to your house who don't realize what this disease does to someone, just keep and show them a copy of your first post. Maybe it will bring a tear to their eyes, too - and get them moving in the right direction to offer help. You have received such excellent suggestions above - the only thing that comes to my mind is that sometimes the meds a patient is on will make him lash out and react badly to all those around him, especially those closest to him. Perhaps you could check with the doctors about this? As others have said, you do need to take care of YOU, so that you can be able to continue being the amazing and loving caregiver that you are. Please stay with us and let us know how you and Doug are doing.

Hi Cheryl,

Your story is a gut wrenching and heart breaking one that is far too common with oral cancer. As I read it, I weep for you and everyone, patient and caregiver alike, associated with this horrific disease. I might say things that seem harsh from the perspective of a wounded heart like your is right now. You cannot die with this disease and what it is doing to your husband. There is no question what you have done is absolutely miraculous. Likewise, you should be doing the same for yourself. Here are some things to consider.

At this point your husband should be on social security disability and receiving Medicare benefits. Medicare provides home health care services that include spiritual counseling for both of you, an aide to help your husband and give you brief periods of respite. This is so critical for your mental and physical health. It is amazing what you have done for this long and there is nothing wrong with getting the help you need just as you are doing for your husband. Also, there are organizations out there that can help find housecleaning services so you can get some relief there too. The requirements are "homebound" status and you can go to the grocery, church and getting your hair done plus any treatment related excursions. It sounds like that applies to your husband. If you need any help with researching or setting up these services you can Private Message me and I will do anything possible to assist. This includes disability and Medicare if your husband has these benefits or wishes to. In his current state, there are some fast track ways to get this done expeditiously.

As far as family and friends, many of us see one extreme or another. Some will be there no matter what but some will not be there...no matter what. Seek out who you consider your very best friend or friends. Pick some time you can either meet them outside of your house in a car even or when your husband is sleeping and pour your heart out. They love you still but they don't know what to do. They see the intensity of your life but the way you describe your husband's attitude towards "outside" help is something that comes across loud and clear and I promise they sense and feel this when they are around him. It is human nature. It is uncomfortable for them, too, because they don't want to upset your husband or cause tension between the two of you. This is a very critical point...you must take care of yourself first, especially right now. This will only help your soul but also recharge you to be a better caregiver.

I am so sorry to hear your story. It is far too common and the "village" needs to rally around YOU just as the medical com I it is rallying around your husband. There are thousands, literally, here that will give you any support, comfort or anything you need. It won't be the same as before all this and it won't be everything you need but it will help some. You can pour your heart out without reservation. Drain the reservoir of stress that has to be built up in you. That is not good.

In a way I am glad your husband is still fighting. Just the fact he has endured all till now and is on continuous chemo shows the incredible resolve and determination he has. You are the main reason he is fighting still. Between his episodes of trying to demand his old life through some of his actions and maintaining a safe environment for him is going to be a constant balancing act. The trauma of finding him in pools of blood and breaking his back is nothing you should be subjected to over and over. It is bordering on cruel. I choose this word carefully because on some level it is intentionally inflicted on you and this is something you do not deserve with all you have already gone through and the perspective of this selfishness in the part of your husband serves nobody in a good way. As hard as this is, his terminal condition does not mean you have to do far beyond normal expectations. Imprisoning you in this hell doesn't make it go away and only keeps layering on stress and guilt for you and that is not good for anyone.

You, Cheryl, are the real amazement in all this. Few can do even a fraction of what you do and for this long. Please take little snippets of peace and calm for you. You are reaching out and asking for help. Now, put some action with this and get your world in all this into a more realistic but compassionate mode so you can find solace but still be there for your husband. We could all wish to have someone that loves us as much as your actions indicate and willing to literally kill themselves for us. Your husband is so fortunate to have that. At this point, however, the benefit of all you do probably isn't providing as much as it is taking for you.

I apologize if this is too direct or harsh but quite frankly, I worry about you. The mind, body and soul can only take so much and no matter who you are, the intensity of all this for so long is taking a toll on you. Please take care of yourself as much as possible. I don't know your personal beliefs but churches are a great resource as well. Also, there are support organizations like SPOHNC that can assign a male survivor to your husband to help him maneuver through some of this while you get some respite.

As I said, my heart weeps for you. You are an incredible lady.

Cheryl, welcome to OCF. Thank you for taking to time to write your story and to include so many details so we all have a good understanding of your entire situation.

First, I commend you as being a wonderful selfless caregiver. Being a caregiver is not an easy job. It takes unwavering dedication and compassion which can wear most people out. Its never easy taking care of someone else as well as being in charge of everything else in the house, including trying to care for yourself when you can squeeze that in. I always advise caregivers to make time for themselves so they dont become overwhelmed. To me, you passed that point a long time ago but you just keep going strong. There arent many who could do what you have done and continue to do.

We are here for both you and your husband. We will support you both. Its ok to lean on us we will do our very best to guide you and offer a shoulder to cry on.

I hate how isolated you are. Its completely unfair to you. Everyone needs support, including your husband (but he would probably never take it). My suggestion would be to have a long talk with him. Obviously he will not be happy so you need to be very gentle and kind, telling him how much you adore him and how hard this is on you too. He needs to understand you must get out among others for your own support. I can only hope he will allow you to have some time for yourself, even if its only an hour or 2 a week. It will help you to clear your head and be a better caregiver.

As long as he is getting treatments hospice will not help. When the time comes he stops the treatments then you will have all kinds of support with hospice. If your husband is taking pain meds they can alter his personality. Also he may be depressed, that is very common with OC patients even those who have better prognosis.

I was looking up the NCCN guidelines for another member when I stumbled across this. I think this may help you with your husband. It addresses support systems among many other important topics.

NCCN Pallitive Care Guidelines

Wishing you both all the very best with everything you are dealing with.

I sat here reading and rereading your comments. My eyes overflow with tears, my heart overflowing with gratitude. You've all been through so much, yet comfort a complete stranger.

Doug is on disability, we had no choice, we've lost the business and much more, but that's where the help stops.
He refuses in home anything! We had nurse care for a day, he told them no more.
As far as spiritual,he has no interest. He never was a church going man and believes it's sacrilege to start now.

Yes he is on an antidepressant, and yes plenty of pain meds too.

Doing stuff together, hmmmm, lets see.
We got out once, went to a family members wedding, we had to leave after an hour because Doug refused to feed himself anywhere but home, even after I found him a secluded spot.

Another true story:
After two broken back surgeries the doctor told Doug to get up more, walk more to rebuild strength, I asked Doug to walk down our sidewalk, it was a nice day,but he wouldn't. He said he didn't want the neighbors to see him using a walker!
Really? These are the same neighbors that have seen him almost die on our front lawn, seen ambulances here on several occasions and the man doesn't want them to see him using a walker...I just DON'T understand.

As far as time for myself, that's no problem, I CAN go whenever I want, but I find it hard to enjoy anything knowing he is home alone and I could once again find him injured (or worse) on the floor. It is cruel! If just for my sake, he should have someone sit with him while I'm out, but he won't - so I rarely do.

A big problem for me is the lack of friends. Oh I have them, they just no longer live in my state. Really I'm not kidding, all 5 of my closest friends have now moved away.
I do spend far too much time isolated, but at least now, I'm not feeling alone.
Am I ranting?
Is there a caregiver is cranky tab?

What an amazing site, such wonderful people. Can't thank you enough.

Cheryl, I don't really see your ranting at all. I hear you asking for help. I used the term spirituality as opposed to religion for a reason. It doesn't have to be religious as much as just processing beliefs when dealing with a terminal condition other than just life itself. Your husband is really struggling right now and needs some help. I don't know that he wants any and that's ok too.

How about you? Could you benefit from speaking with a professional? What you are currently facing is something that few can ever understand. The stress from it all is so hard on the body and mind.

Do either of you have family in the area?

I totally understand not wanting to leave him alone. You should address this and find a way to get a release from it evn if only a few hours a week.