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.





Posted By: ngk Re: I've waited to long to ask for help. - 11-28-2013 08:13 PM
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.
Posted By: donfoo Re: I've waited too long to ask for help. - 11-28-2013 08:21 PM
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.
Posted By: tamvonk Re: I've waited too long to ask for help. - 11-29-2013 07:51 AM
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
Posted By: Anne-Marie Re: I've waited too long to ask for help. - 11-29-2013 09:25 AM
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.
Posted By: Uptown Re: I've waited too long to ask for help. - 11-29-2013 12:37 PM
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.
Posted By: ChristineB Re: I've waited too long to ask for help. - 11-29-2013 01:37 PM
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.
Posted By: Uptown Re: I've waited too long to ask for help. - 11-29-2013 07:15 PM
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.
Posted By: AnitaFrances Re: I've waited too long to ask for help. - 11-29-2013 07:54 PM
Cheryl,

My heart breaks for you. I understand that you are caring for your husband and want to do the best for him but I agree that you must take care of you! You are not alone in feeling guilty and sad. I must guess that you also have felt anger as well.

The thing that we caregivers often do while we are taking care of our loved one is to ignore ourselves until the emotional and physical effects stop us in our tracks. This is where I think you are now. You have reached your limit. You do need to ask for help among family and friends.

I remember those days. My husband did not want anyone but me around. He did not want anyone to see him with his trach and feeding tube. He was fine with the visiting nurse and with my sister, who is also a nurse. But other friends and family members were not welcome back then.

Your husband may be more accepting of a visiting nurse or other supportive care in that they don't know him and don't know what he was like before cancer. For the patient and spouse, this disease is a constant reminder of what has been lost. We still go through that to this day. It is so hard and sad to realize that everything is different.

Please take advantage of support services mentioned in Uptown's post. You cannot continue this pace without a break! A quiet and gentle talk with your husband while holding his hand and reassuring him how much you want the best for him by being your best in essential now.

If you can schedule a few hours a week to get out while someone else is there will do you so much good. You can reconnect with family and friends and clear your head. People generally want to help but they don't always know what to do. Now is the time to ASK for help. Remember that some people cannot rise to the occasion and they may find reasons to not be there. That's okay. Go on to the next person on your list and ASK.

Those who want to help will be thrilled to be able to assist you in any way. Years ago when I was at one of my lowest points, I emailed a colleague and told him what was going on. I said that I really needed people to rally around me. The next thing I know, I am receiving emails from 20 or so people that he had contacted on my behalf. I felt so loved.

You have taken the first step by posting here. Good for you! There are so many of us who KNOW what you are going through. Keep coming back here. This forum was a lifesaver for me and I don't know where I'd be today had I not posted.

One more thing, your husband's frustration and sadness can manifest itself as anger. Anger can be a catch-all emotion for all the other feelings swirling around. Try not to take that personally. He feels safe with you, so you will be the recipient. There may be a time that you will have to gently but firmly communicate to him that directing his negative feelings toward you is inappropriate and unacceptable.

I remember being on our first visit to the Radiation Oncologist. After the appointment, where we had gotten the low down on what was to come, we were on our way through the maze of corridors to get back to our car. I was fumbling around for my keys, had to stop, put my bag on the floor and look for them. My husband was really pissed off, crabbing, huffing and puffing about this short-coming of mine. It hit me! I said, "Oh, am I inconveniencing you right now? Let me tell you what an inconvenience your illness has been for me. Back off."

I had set a new boundary. It is okay to be angry, sad, miserable, pissed off, etal, but don't take it out on me, your caregiver. Tough love. I am not interpreting that this is what you are going through, I just wanted to let you know some of the things that we experienced. Any time you need a shoulder or support, I can listen. You can PM me here or on FB.

Sending you caring thoughts-
Anita
Posted By: ChristineB Re: I've waited too long to ask for help. - 11-30-2013 02:16 AM
Ranting? Heck no, thats not ranting! We have heard it ALL around here.

You may have had your 5 friends move away but you have just found yourself a whole bunch of new friends. It may be only online but we are real live people who care about others and will help support you. Ive been lucky enough to meet many members across the country and they have become my life long friends. We have a special bond that only we understand which makes us like BFF's immediately when we meet. Maybe you live near some other OCF members, never know. You could have a whole group of new pals that you havent met yet.

The more I read of your struggles, the more Im thinking your husband has some issues. Its not fair to you at all. I seriously advise you to have a long discussion with him and explain how trapped you feel. He must start to take some responsibility for his actions and selfishness. Im not saying he doesnt have every right to feel upset, depressed and angry. Those feelings need to be worked thru with a professional. Im so sorry for everything you both are going thru.

Life just isnt fair!
Posted By: n74tg Re: I've waited too long to ask for help. - 11-30-2013 04:06 AM
Hi Cheryl - I too welcome you to this new family. It's a good one, no it's a great one as we all have something big in common, the C; either as a patient or as a caregiver. So, unlike many friends or even relatives we do to a certain extent know what you are going through now and have in the past. Everything you feel we have felt too (collectively).

So, maybe the first thing you need here, even before you start getting advice about what to do with Doug, is to start developing some individual friendships here on the forum. There are a lot of really good people here willing to do that. As you read what people write you will be able to tell if that is a person you want to become a closer friend too.

Here on the forum we have Personal Messages (PM's for short). If you want to talk privately to an individual just click their username and choose Send Message. It will go just to them and can be read only by them. Their response will be equally private.

At the top of each page if you have a blinking flag next to the words My Stuff, that means someone sent you a PM. Click on the flag to read it.

I'm sending you a PM after writing this.

Again, welcome to the family.

Tony

Posted By: travelottie Re: I've waited too long to ask for help. - 11-30-2013 02:16 PM
Cheryl, I read your post yesterday morning before leaving for work. I have thought about you all day and night. I have only gone through a fraction of what you are dealing with, but I remember those raw & desperate feelings.

I've been trying to think about what might be helpful - one thing that jumped out at me when I reread your words, " I miss life, is that a horrible thing to say? It feels it, and the guilt gets to me". NO, it's not a horrible thing to say, it's normal. You are expecting too much of yourself...

At a time before the treatment side effects took a toll on my husband, we were trying to cope with the dx and the unknown, and I was trying not to cry, stay positive, etc. It felt false to me. I read in a cancer publication that sharing these feelings with the patient is sometimes a good thing. That gave me the permission I needed to open up to my husband. We had a long cry together and I actually felt better. I'm not saying this should be your approach, but holding in these normal feelings can make it more difficult to cope.

Regarding support from others, I was (and still am) bitterly disappointed by the reaction of my two adult stepdaughters. They did not help and were even distant. I don't want to take up this post describing what happened, but want you to know that you are not alone in having others disappoint you. I did have others who helped. I want to mention that the best thing for me was taking a walk with someone. Somehow it was more natural to talk while walking, instead of sitting down for a big heart-to-heart, and it got me out of the house for a short time.

Please keep in touch and let us know if any of these posts point you in a helpful direction. I agree with Christine, it seems that your husband is not being fair to you and that pattern has been established.

Lottie
Posted By: tina77 Re: I've waited too long to ask for help. - 11-30-2013 02:25 PM
Cheryl,

Wow, you have both been through the wringer and my heart goes out to you. Have you considered guilt? It may sound mean, but maybe your husband needs to hear your needs for a change.

My dad went through a very difficult kidney disease which saw him on dialysis for a year and a half. He lost 80 pounds within a few months and the dialysis took a huge toll on his strength and ability to function. My mom, of course did everything for him, and never uttered a word of complaint (I am halfway across the country). When she finally confessed her stress to me, I confronted my dad, and asked if he intended to make her his slave. He was shocked. He had been so wrapped up in his own misery he forgot that my mom was going through this with him.

Your husband sounds like a good man at heart who has simply forgotten. Remind him that you can make new memories, and ask him if he wants you to remember him (or see him) as a housebound invalid. Does how you see him matter? Does how you feel matter? It sounds harsh, but it may be the push he needs if he considers that any effort he makes is for you.

Keep coming, this is always a safe place.
Posted By: Cheryld Re: I've waited too long to ask for help. - 11-30-2013 04:20 PM
Hi... sorry life has taken me away for a few days - normally I drop in daily but ...dare I say st.nick has kidnapped me and made me a slave to the mall - hello Christmas shopping!!! ... Lord save me - anyway I wanted to welcome you Cheryl (I'm another Cheryl and there are a few more here).
I watched one of my good friend slowly fade away from cancer a year ago. The one thing I think that made it easier for her family was having so many people around her. I wish that for you.
Your husband - it sounds to me - is very angry, clearly resentful, and proud. Before all this began I gather owning his own company made him feel fulfilled, and successful and confident. For a lot of men - to them - this is where their value is.
I know there is a lot of baggage there - and the guilt must be overwhelming but you have to stop. Taking this in you are only harming yourself. Firstly you are still grieving what you have lost - your husband too. But by holding onto that nothing will ever change. The reality is - sadly that life is gone and what has come to exist in its place is devastating and harmful. The first step to getting past this is acceptance. This acceptance will allow you to do one thing that you haven't up until now - which is step back and not personalize this. '( I know 1 hard to do what you are living it day to day - but for your own self preservation you have to)
When I was first married to my husband (he's very successful and has his moments of definite selfishness) - I would allow his mood and behavior to affect me in such a way that I felt guilty and believed I was at fault. I guess with maturity and over time I grew to accept that his mood and feelings were exactly that - HIS - and normally my behavior had no bearing on them - although my reaction to them could. I stopped feeling guilty - grew a back bone and told him... I'm not your whipping boy and if you are worried or scared or mourning or upset - I will listen and I will talk and do what I can to help but I am NOT going to be an emotional punching bag.
I say this because your husband is clearly - as I said - angry and resentful, resentful of all he has lost, of you and the fact that you are well and can live your life 'normally' if you choose, resentful of how he is forced to live. And he's clearly taking it out on you.
Accepting what has happened and the grieving the loss of your former life is natural but at some point you have to shake it off and move past it or you will self destruct.
I know this all sounds harsh but your husband is a grown man and yes life has truly dealt him a cruel hand but when faced with this people tend to do one of two things - close up and step away - or grow together in support and strength. I see from your posting you wanted the latter. He did the former.
You can't really change this - for him it has to be something he will change from within. He may or he may not. BUT you can change your reaction.
You need to start living your life. You need to tell him you love him, have done everything you can and will continue to do so to support him but if he's not going to help himself then you are limited.
I suggest do take the time to go out for a bit. Spend an hour or two doing the things you love. Even if it's just an hour a day to take a yoga class (to make a friend or two) go to a gym or even join a support group. He is an adult, and he will - likely being as stubborn as he sounds - continue to do the things he's going to do. If falling twice hasn't taught him anything then there is nothing you can do to change that - accept it. He makes his own decisions - I'm not saying abandon him or anything and do be mindful of the time you are gone or try and put a safeguard in place ( a neighbor to come knock on the door to borrow milk? While your gone to make sure he's ok) but do take the time. This will freshen you and lighten your mood. It will feed your soul and banish some of the toxicity and this way his mood may change with yours - it may not but at least you will have done for yourself - and you need this. It's not being selfish - it's self preservation. I used to be a nurse and one of the things that's important since it can be a very stressful job, is making sure that day to day you enjoy what you are doing. Once you stop, then you need to change jobs because staying and being miserable day to day can be as detrimental to you as it can be to you patients. It's the same premise here.
You have to learn to get back some of your joy. Your change in behavior - going out for an hour a day - will send him a message - just make it clear to him what message it is. (Sometimes people need it spelled out) not that you are abandoning him and moving on, but rather - he's a grown and independent man (as he is so clearly trying to say) and you trust that he will be okay while you're gone and he can call if he needs you.
This may make him feel better about his situation - you're not hovering worriedly - and you may even bring something interesting and different home to talk about. smile
Hugs and we are here to support you.
Posted By: KP5 Re: I've waited too long to ask for help. - 12-01-2013 07:58 PM
Hi Cheryl,
Wow...your words hit home. We are 2 years out from dx and so far free from a recurrence, but there is still a distance between us. I cannot even imagine how hard this is on you because it sounds like our husbands are very similar. Pride is a very hard thing to break. Kevin has already said that if he has a recurrence he won't do any tx again. I just said ok, because he can't really say that until he is in the situation. I can picture him refusing to go out with a walker too. I don't know what it is about some people but I think it is fairly common.
I am so glad you have found us and let us into your home so to speak. I know how lonely it can get. I found these forums our last week of radiation and have been here since. I received so much info and support those first few months. I was completely lost and writing here in the forums helped me to learn what we were going through was completely normal. We really have become an extended family for each other, and now you are a part of our family too.
I know everyone has given you tons of advise so I won't go there. I just want to say keep coming here to vent, we really do understand completely. I do agree a heart to heart with your husband might help. You can get firm, or cry, but I know with Kevin neither would work. Hopefully it will for you.
Will be thinking of you and praying if that's ok.
Kathy
Wow!
I must repeat myself; you guys are amazing. So much everyone has been through yet even the ones that are out of treatment still come here to offer advice and comfort- truly an inspiration, so very grateful I found you.

Nothing has changed in Doug, but every time I open this site I get a little more courage to stand up for me!

I tried talking to him, at first gently and then with tears.
He sees nothing the way I do, it seems we are on entirely different planets.
I tell him my fears and he tells me not to worry about it- do what I want, do what I think is best.
There was no mention at all of him trying to change his behavior patterns, just mine.

For so long I thought it was just the 'chemo brain' talking, but more and more I realize it really is just him. He choose how he was going to deal with awful disease and there is nothing I can do to make him change.
He says things like he feels sorry for me having to be stuck in this life, for having a half a man and not a husband , but he seems content to keep the situation like it is.

I am desperately trying to accept our 'new reality' and you would think after all this time it would be easier.
Not so.
He is with me, yet I feel like he is gone. It's a crushing weight on my chest every time I think about what we had, what we've lost.
Without Doug taking any steps to make a new different kind of us, it's like mourning his death over and over.
And the GUILT, oh such awful guilt- but I am learning that is time for me to over come.

I've taken my second step in trying to recover a part of me, the first was joining this site.

I called my mom up and asked her to go play bingo with me tomorrow night. Yep just her and I, no sitter with Doug as he has once again refused.
It will be different for me, but I'm going to try and have some fun, and not hang onto my cell like it was a lifeline.

I have even made a decision, that when Doug has Pacemaker surgery 12/27 I will not hover night and day, but for once let Doug and the hospital staff deal with it. ( I've never left his bedside before)

I won't lie; there is still much heartache and oh so many tears, but thanks to all of you and OCF site I am learning to take one step at a time.








Posted By: ChristineB Re: I've waited too long to ask for help. - 12-02-2013 10:03 PM
Cheryl, being a caregiver is not an easy job at all. I commend you in everything you have done for your husband. he is very lucky, too bad he cant see the whole picture and realize how fortunate he is.

I wouldnt be surprised if his thyroid and testosterone levels were low and that he wasnt suffering from depression as well. In his situation who wouldnt be upset and not thinking straight? This may be why he isnt able to comprehend anything besides his point of view. It almost sounds like he doesnt see you as his ally but more of someone who isnt fully signed on for this battle. Im sure he would not go with the idea of speaking to any professionals about the situation. It wouldnt hurt getting his blood levels checked as well. Never know it may help.

Hang in there, your new BFFs are here to support not only your husband but you as well. We are here for you both.

Posted By: PaulB Re: I've waited too long to ask for help. - 12-02-2013 10:44 PM
On another note, fighting may just be what's keeping your husband alive all this tine. If only he can direct it more towards cancer, and not loved ones, everyone may be happier. Sorry for your troubles, and you have plenty of good suggestions.
Posted By: Anne-Marie Re: I've waited too long to ask for help. - 12-03-2013 08:25 AM
Cheryl, as Paul says, fighting may well be the thing that is helping him to keep some measure of control over the whole rough ride you are both on. Many survivors go through various stages of denial, fighting, acceptance, etc. and not in the same way or in the same order. The loss of a previous lifestyle is a definite loss and brings with it all manner of reactions for both of you. I think it must be hard for a man in particular to have to accept help or suggestions from someone else. When my son was going through Tx, he reached a point where nothing I tried to suggest had any effect. He had the attitude that I couldn't know what he was going through and if he couldn't figure things out, nobody could. ( He is super intelligent but I still have to remind him sometimes that somebody else may also have a good idea that he hasn't thought of yet.) What I did, was print out some of the suggestions from other posters here of things I thought he could benefit from and just leave them somewhere while he was sleeping (sort of accidentally) so that when he woke up and I was gone, he might be curious enough to look at them and decide for himself whether they were good ideas or not for him. This way it was not his mother telling him what to do. And it really worked! I could tell by his reaction afterwards that he had read the stuff. Cheryl, you know your husband best and and can probably decide where this might work. It's worth a try. If you do it while you are out taking a walk, or playing bingo, then he has time to think about it.
Posted By: slim Re: I've waited too long to ask for help. - 12-04-2013 05:24 PM
Hi Cheryl and welcome to a new family who WILL support you. You can see from my signature that "we" are coming up on the 5 year anniversary from when John was diagnosed and started this battle. I say "we" because I really feel like it is/was "our" battle and not just his. I stay active on the message boards here as a way to give back to all the other caregivers going through this battle. I don't know what I would do without this wonderful, caring community. John also owns his own business and was never sick a day in his life before his cancer diagnosis. I was very thankful and lucky that this ordeal brought us closer and brought out a love in John for me that I never knew existed.

In my years on these boards there have been many caregivers who have been in similar situations such as yours. No matter what YOU need to take care of you. Being a caregiver can be a very tough and lonely job. We also had family members who just chose to check out and I choose to no longer have anything to do with them.

Like others have said you can't change your husband but you can change your reaction to him.

Just wanted to give you a BIG cyber hug and let you know we are here for you no matter what. Hugs, Wanda
Posted By: tina77 Re: I've waited too long to ask for help. - 12-06-2013 01:28 PM
Cheryl,

Just as a note, I also am self employed, and as stupid as it sounds, I didn't cry until I was told that I could expect to be off work for 3-6 months during rads.

I've been thinking a lot about what you have written. My job is to problem solve, so I have been mulling over this, and here's what I have come up with

(a) A big part of who we are is often defined by our work. While he can't return to work is there something connected to that he can do? Maybe consult for another company? His brain is still there, even if physically he can't. Are there some old work contacts who could start by simply emailing him some questions?

(b) Or perhaps there is a skill that is transferrable to charitable organization. I have a friend who is a carpenter, but was in a bad car accident, ending up in a wheelchair. He now carves wooden figures, which are donated to charity.

(c) Is there a task around the house that isn't too taxing that you could ask him to do? He strikes me as a "man's man", so anything outside of the traditional realm of "women's work" (cooking cleaning, etc.) might work. Fix a clock, build a shoe rack, etc.. As a feminist myself, I had to readjust my thinking for my dad when he was sick, because asking him to help fold laundry was akin to suggesting he was weak (men, bah - birth some babies, and then tell me who the weaker sex is - no offence meant gentlemen).

That's all I have so far, and maybe none of it is helpful, but it might trigger something for you. I'll keep mulling.
Hi all,
I'm really at a loss of where to post. Should I start a new topic or be under caregiver?
I really feel lost, so I'm just going to write here and see what happens.

I need help with this sadness, I need help with acceptance.

Last Tuesday I noticed Doug's leg swelling. I showed him, but he wasn't concerned. By Wed I was sure the swelling wasn't right, but true to Doug's self, he asked me to wait until Chemo Thurs to see a Dr.

On Thurs Dr took one look and sent him to Doppler. He has three very large blood clots. He was admitted to the hospital where he received platelets and blood thinners to get rid of the clots yet make him strong enough for surgery.
It was quite the balancing act.

One the 16th they took him to surgery and put in a Greenfield Filter to catch any dislodged clots.

During our hospital stay they did his 3 month PET Scan, and it was not good.

The cancer has returned to the 2% of tongue he has left, it has invaded more lymph nodes and has metastasized into his right lung.

I am devastated, we are devastated. We understood that someday the chemo would stop working, but somewhere I believe, we both held onto hope.

There is a crushing weight on my chest that I cannot shake.I am frightened beyond belief and just don't know what to do.

As you would guess, Doug is keeping himself as busy as possible and as always Cheryl is wanting him to stop.
Yesterday when we got home he was up and down the steps 10 times. His syncope would hit, he'd stop for a moment, then continue on.
When I asked him to stop he said he was not going to lay there and die.

Today his leg is swollen again, go figure. He refuses to call the Dr, but he is taking it a bit easier.

I want to choke the life out of him, yet I'm so very scared of losing him.

I'm a plain old basket case and have no idea what to do.

Posted By: Uptown Re: I've waited too long to ask for help. - 12-22-2013 09:16 PM
Cheryl, I'm really sorry to hear your news. Is Doug under hospice care now? I know you mentioned the chemo as purely palliative so Doug would qualify. They have a lot of resources that could help you both deal with so much in front of you right now.
Posted By: ngk Re: I've waited too long to ask for help. - 12-22-2013 11:16 PM
I'm so incredibly sad to read your recent post and to read about how scared you feel. Of course you are sad and scared. I so wish i had an easy fix, or the right words. I have neither. Praying for your peace, for Doug. It's all I can offer. Hoping someone there will come along side of you for support.
xo
Posted By: Anne-Marie Re: I've waited too long to ask for help. - 12-23-2013 08:29 AM
Cheryl - Please get some help for YOU! Lots of caregivers get depressed and anxious to the point where there seems to be no way out. Call your doctor or Doug's doctor (or have someone call for you) and tell them what your are feeling and what's been happening to you both. There are meds that can help you cope. During my son's treatment, I reached a point where I thought I would just explode with everything I was worried about. I happened to be in my car driving and just made it over to a parking lot where I had to take several deep breaths before I managed to call my doctor and then drive home. The meds won't change the situation, but they can make it easier to cope. You need to take care of You, Cheryl so that you can continue to be the awesome caregiver you are for Doug.
Posted By: davidcpa Re: I've waited too long to ask for help. - 12-23-2013 04:50 PM
so so sorry.
Posted By: Cheryld Re: I've waited too long to ask for help. - 12-23-2013 05:08 PM
Cheryl I pm'd you. Hugs girl.
Posted By: ChristineB Re: I've waited too long to ask for help. - 12-23-2013 08:17 PM
Cheryl, Im so terrible sorry about everything you and your husband are going thru. We are here for you both. Please dont be shy, its okay to lean on us.

(((HUGS)))
Posted By: KP5 Re: I've waited too long to ask for help. - 12-23-2013 08:47 PM
Pm'd you too.
Posted By: didier Re: I've waited too long to ask for help. - 12-30-2013 01:35 AM
Cheryl,

First I want to send you a big hug and let you know that you're in my thoughts. I'm so sorry for what you're going through. I've found hospital social workers or a licensed psychologist to be extremely helpful during difficult times. All my best, D
Posted By: sheilasgirls Re: I've waited too long to ask for help. - 01-02-2014 06:11 AM
Cheryl,

Hi. My Mother is going through allot right now. I have 2 sisters and a father. We are all taking care of her and are all exhausted. I keep telling myself to not have any regrets. Which my sisters remind me daily also means to not be too exhausted to take care of myself. I can only say you are doing an amazing job a taking care of him. Remember to take care of yourself. I have talked to my doctor about medication for myself. It has helped with my ups and downs.
Hi all,
We're still here, though things have been very bad.
Our current Cancer has done all they could and has sent us to a new place an hour 15 minutes away.
Doug had a lung biopsy today to determine if the original cancer has metastasized there or if we are a fighting a completely different cancer.
Either way they aren't waiting and we are starting a different chemo regimen at the new CC tomorrow morning.
This Dr like the 3 before her said there isn't any hope, but to try chemo to see if it can reduce the tumor to reduce the pain.

He is in so very much pain now it's just awful. We've tried the Fentanyl Patches and the only thing it did was make him sick, so we are back to Percocet, Morphine and Methadone and he's still in such terrible pain.

I've tried again to talk him into Hospice, but he just isn't ready.
I don't know what else I can do except to be here for him as I always am.

Still scared, still lonely and oh so tired.
Hospice has now been called in. Still scared- how can I be losing him. I'll be a widow before I'm 50. Panic attacks come frequent, hard to let go.
Posted By: ChristineB Re: I've waited too long to ask for help. - 03-02-2014 01:26 AM
Cheryl, glad you checked in. Its been a while, I had wondered if everything was ok.

Im so sorry about your situation. We are here for you.
Posted By: Maria Re: I've waited too long to ask for help. - 03-02-2014 01:26 AM
Cheryl,
I am so sorry to hear this. Where are they doing the hospice? The hospice people we had with my Dad were wonderful - I hope that that your team is also good. Please keep us posted.
Maria
Posted By: donfoo Re: I've waited too long to ask for help. - 03-02-2014 03:57 AM
Hi Cheryl,

Thanks for taking the time to update us here. It is very sad news to learn Doug now needs hospice. They server an essential service so please embrace all the support they offer and have available to help.

At this point, taking one day at a time is helpful. Enjoy what the day offers and hope the next will be at least as good if not better.

Best to you and Doug.
Posted By: tamvonk Re: I've waited too long to ask for help. - 03-02-2014 05:35 AM
Cheryl,such a heartbreaking story. This disease has been relentless for Doug and he has gone through so much. As have you. You have walked every step of the way with Doug, every step. You really are an amazing Woman.
As this journey comes to it's conclusion, breathe. Try to enjoy each day and moment you have left. Let Hospice do the caring. Let them look after you too.
I understand your panic and the not wanting to be left alone. It is far too young to be widowed, way to young. It's not fair that this disease has robbed you and Doug of 30 years of living and loving.
I want to tell you that will get through this, you will, in time.
I pray that your families gather around you now with support and love.
In my thoughts,
Tammy
Posted By: ngk Re: I've waited too long to ask for help. - 03-04-2014 03:10 AM
Praying for miraculous strength. It's heartbreaking to hear of Doug's physical pain, and your emotional pain. It's a very hard load to bear and like everyone said above, please take from those who are willing to serve. Lean on your loved ones.
Posted By: gmcraft Re: I've waited too long to ask for help. - 03-04-2014 04:32 PM
So sorry to hear that Doug needs hospice. If you are experiencing frequent panic attacks, maybe you could access some support from a therapist/counselor at the hospital or the hospice. Just being able to verbalize to someone your fears and worries will help you deal with these anxious times.
Posted By: KP5 Re: I've waited too long to ask for help. - 03-05-2014 12:10 AM
Hi Honey,
Like I said in my PM. You have others with you don't you? I am really hoping you are not alone. Write me. Praying for peace.
Kathy
Today we meet our primary nurse from Hospice and tomorrow a social worker is coming to see me.
It's hard to post here, I'm in fear of scaring someone whom is just starting this journey.

We are now on a two hour around the clock pain schedule and most days I can barely see straight. I am hoping this new nurse (we've had 4-5 here in the last two days) can schedule a night nurse to stay with him at least once every other week through the night so I can get some rest. It's been months since I've been able to sleep through the night.

His pain meds have tripled within 48 hours and my poor husband still has terrible break-thru.
You can see the tumor growing daily and it scares the hell out of me, so many things scare me these days.

I don't know how much time he has, my only prayer is that he can find comfort in whatever time we have left.

He is in and out of consciousness most of the day, but when he's awake he is mostly miserable.

Family comes more now - it's heartbreaking that it had to get to this point before they finally started.
I know a lot of it was Doug's fault, he's always hated and still does hate what the AWFUL FLIPPING DISEASE has done to him and his once gorgeous self.
I try to remind him everyday that he is still the man I married and my love has only grown.

Thank you all for being here for me, being a caregiver is quite a lonely job.
Posted By: Uptown Re: I've waited too long to ask for help. - 03-05-2014 03:46 PM
Cheryl,

Don't worry about getting out your story. It is horrible and I'm sure as hard as it may be for some to hear, it is important for you to be able to have found someplace where people understand, somewhat, what you are dealing with. We all have a choice in how much we want to read. Your options of having an ear to bend, a shoulder to lean on are much more limited.

I am so sorry where things are now. I can't even imagine what you are going through. I pray with you for comfort for Doug. I also pray for comfort for you and for more people to step forward and give you at least some type of rest.

What we see you going through is a person so fortunate to have you by his side to feel your love. It is a beautiful thing indeed. May you feel His presence in all you are and all you do. May His grace be sufficient for you and Doug, now and forever.
Posted By: ChristineB Re: I've waited too long to ask for help. - 03-05-2014 08:02 PM
Im so sorry, Cheryl. Post when you are able to. Its okay to post your true feelings. Everyone needs to let that out once in a while. This is a save place to vent. While the horrors of your situation cant be completely understood, we do empathize with what you are going thru.

((((HUGS))))
Posted By: AnitaFrances Re: I've waited too long to ask for help. - 03-05-2014 10:28 PM
Oh, Cheryl, your post is heartbreaking. I feel your sadness, pain, and overwhelming loneliness. I am praying for you and Doug and hoping you get some much needed sleep. The best thing you can do is know that you are doing everything you can. Keep posting. I wish that there was an easier path through this time. You are not alone.
Posted By: Mamacita Re: I've waited too long to ask for help. - 03-05-2014 10:55 PM
Cheryl, I'm so sorry that you and Doug are facing this pain and sadness. You've both been through so much, and fought so hard. I hope that the new hospice nurse can reduce Doug's pain. Please don't worry about posting too much truth, this thread is for you and you don't need to please or protect anyone here.

(((HUGS)))
Oh my G-d Nurse had to come last night. He is starting to bleed out. They can't say how much time he has but they just sat me down and told me he will eventually start bleeding out thru eyes ears nose throat. I am shocked and broken, never even occurred to me he would die so awfully. I feel so unprepared, how could they not of told me this. They did say they don't know when only what the ugly details were. I am petrified
Posted By: TheresaC Re: I've waited too long to ask for help. - 03-09-2014 10:16 PM
You and your family are in my thoughts and prayers. I am so sorry you are hurting and having to go through all of this.

Theresa
Posted By: tamvonk Re: I've waited too long to ask for help. - 03-09-2014 10:21 PM
Cheryl, wish I could help you. Are you keeping Doug at home or is he able to go I to the Hospice for full time care with you staying with him? Is Hospice giving you a nurse 24 hours at home? Please ask them for more help. You should just be his wife now. Not his nurse..
Oral cancer is not a nice way to die. I truly am so sorry.
Keeping you both in my prayers,
Tammy
Hello all.
I'm sorry to even have to say this, but my love is gone. Doug passed away at 5:22 am march 20th.
I am beside myself with grief and pain. Not only did I lose my love, I lost his family because of religion and his life insurance because no matter how hard I tried Doug would not tend to end of life details. His life insurance was left in his ex wife's name for over 15 years'! I know he never meant for any of this to happen but it did!
Grief and anger come in waves and I don't know how to handle it all.

If I could say one thing to the sick- Please please, it's not giving up by making sure everything is in order for your loved ones. Losing you would be pain enough, let alone lose everything you worked for. And please let all of your family know your last wishes, don't leave your loved one fighting for what your wishes were like my husband did.
Grieving is so awful, anger and loss only amplifies your loss.

At times my pain is so great I don't think I could take another breath. There are moments I pray he is up there seeing what anguish he left me with and more often than not I pray he never sees the pain.
Posted By: BrianPK Re: I've waited too long to ask for help. - 04-14-2014 10:22 PM
Very sorry to hear of Doug's passing and your circumstances... My wife survived breast cancer and was pretty no nonsense about me getting my papers in order. I did not like to talk about it at all. You give some very good advice and I hope that things soon improve for you.
Posted By: Bart Re: I've waited too long to ask for help. - 04-14-2014 11:07 PM
Thank you for sharing that with us, shantueausrfighting, I cannot imagine how painful it was for you to come here to say that, and it definitely needed saying.

When I got the news of my "upgrade" from Stage IV to Stage IVc, I did all those things for my prospective widow, and traded my new POV for a much cheaper one and a large check for the difference which I put into savings for her.

I can't say how sad it is to hear how you are getting cheated out of his life insurance. My heart goes out to you, along with my admiration for the strength you show in this post.

Thanks you very much, Brave Lady!

Bart
Posted By: PaulB Re: I've waited too long to ask for help. - 04-15-2014 12:08 AM
Cheryl, I'm sorry for your loss, and offer my condolences in Doug's passing. Thank you for sharing the necessity for pre-planning.
Posted By: gmcraft Re: I've waited too long to ask for help. - 04-15-2014 02:20 PM
Dear Cheryl, I am so sorry for your loss and the attendant problems. It must have been a really rough time for you. Please know that you are in my thoughts and prayers.
Posted By: Meli Re: I've waited too long to ask for help. - 04-18-2014 05:33 AM
Oh Cheryl, that's terrible horrible news! My love is with you and I shed tears for you and your family...
Try to take peace in knowing that he is no longer in pain and you can remember the good times. Only time will heal...

Love to you from the other side of the world,
OCF Member, NZ
Thank you all, your kind words mean so much.
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