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Husband has stage four head and neck cancer 
Started by Melinda
26 Jan 2014, 1:57 AM

He is only 52 and its extremely difficult to watch how much he is changing. He had over forty radiation treatments (one whole summer) and now they are giving him palliative care chemo. He has chronic ulcerating malignant skin lesions on his neck and a cavity behind his ear. Health care nurses are in every day to dress the wound. He is getting alot of infections, etc.. The cancer has spread to his bones, lungs and liver. So far he is not having any pain...so fortunate. And he has rose colored glasses on and seems to think he is going to live for years...I am so happy for him that he feels this way. But I know better and I am starting to feel alot of fear....fear of the unknown and what is going to happen next. The fear is always there now and I don't know how to deal with it. Perhaps someone has ideas that will be helpful to me? Thank you in advance. 
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Reply by marstin
26 Jan 2014, 2:50 AM

Hi Melinda,

I'm glad that you have found this site. You will find many of us on here who have walked beside our partners, parents, siblings as they battle cancer. The fear of the unknown almost paralyzes you and although you want to know what it going on, there is usually that part of you that doesn't.

My suggestions for you would be to try to take each day as it comes. I know, it's easier said than done. Take time out to do kind things for yourself to alleviate some of the stress, like go for walks if the weather allows or take a bubble bath or read a book if you can concentrate. Anything that might take your mind off of things for a few minutes. Talk about it so that it doesn't stay bottled up. We are great listeners here.

Do you have children? Close family and friends?  Please tell us a little more about yourself.

Know that you have caring people here that will respond to you as quickly as possible.

Hugs,
Tracie
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Reply by Melinda
26 Jan 2014, 2:11 PM

Thank you for the kinds words. Yes I have a daughter who is a nurse and a great deal of help to both of us. My two sons live further away and help as much as possible. They are great at physical work around the house whereas my daughter is emotional help. But I don't like to dump on her all the time. Or my friends...I don't want to be the friend who is avoided because we only talk about my situation. So, dear friends, I will lament on this board!
I don't have a fear of the future. When my husband received his diagnose we redid our wills and made sure all our t's were crossed and our i's dotted.
Our family Doctor answers all my questions and told me that my husband would most likely bleed to death and it would be quick. This information floored me for several days. I kept imagining horrible senarios. But at least I knew something and what to expect...so this fear was somewhat tamed. I don't ever share information with my husband. I did once about how a biospy was going to proceed and he brooded on it for days and was so cross and hard to get along with. So information is not a good thing for him. I am finding this is best in helping him to cope..he does not want to know!!
 I am still working full time..so between this and taking my husband to all these endless appointments (family does help, but they all work too and my husband cannot drive) I have lost myself.  It is like I put everything on "hold" and I am waiting for "after".  When I talk about "after" my daughter knows exactly what I mean. Some days I wish the "after" was here....I think the waiting is the hardest part on me..not on my husband because his rose colored glasses are firmly in place. I was even thinking the other day on buying new funeral clothes and going to the funeral home and just chatting with them about what to expect. I feel the urgent need now to start planning! And I know my husband is not ready for this, but at least when he is, I can give him options.
Just re-reading my writing and realize how "put together" I sound. Not sure why I am even bothering you people and not sure what I am looking for from this board. But I will keep coming back because I am sure someday I will have a question.  This board has been such a help understanding the physical changes in my husband and for that I thank you.
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Reply by marstin
26 Jan 2014, 4:07 PM

Hi Melinda,

It certainly does sound like you have all of your ducks in a row as far as making sure everything is in order so that you won't have that burden at the end. You understand that the time will come when he loses his battle. You sound so very logical and yet I'm wondering where your pain is hiding. How long have you been married? I was with my guy for 23 years and remember the feelings of detachment as we went through the process and how it was like I was standing on the outside looking in. I did what I had to do and did it so calmly and without alot of emotion. I believe our minds begin the grieving process long before the time comes and with it comes a numbness.

I think you came here to allow yourself to share some of your emotions. Although you think you are prepared mentally, when the time comes that will probably all change. It has been a year and a half since I lost Len and let me tell you, it has been a rollercoaster ride. I have to admit that I had no idea how many emotions a person can go through. Your entire life changes and brings with it a whole new set of challenges.

You are very fortunate to have your daughter and sons to bring you support. I have two daughters in their early 20's who live with me and it has been quite the emotional time for all of us trying to adjust without Len to lean on. It's incredible how you are so used to someone being there and the void when they're gone is huge. For myself it has been an incredible learning process as I deal with everything that he used to take care of like taking over the running of the house, the bills that come in, all of the decisions that have an impact on all of us. I lost my mom (my best friend) within weeks of losing Len so I've had the extra stress of dealing with my mom's estate and an unco-operative brother in all of it plus the emotions that came rolling in. She went into the hospital the day after Len passed away and I floated through the 7 1/2 weeks that she was in there without much emotion. I don't think my mind would allow me to feel my losses at that time. I have managed to keep it together somewhat since then because I push the pain away as I deal with one issue after the other and keep praying that when I finally can take my emotions out to look at them, that they don't derail me. I only tell you this because I think some of us are not able to deal with what's going on inside of us all at once. We are so used to being strong that we don't know how to allow ourselves to fully feel the impact. I'm not sure if that's a good thing or not.

You are not 'bothering' anyone on here by sharing. We are here to listen even if you just talk about your day to day challenges of juggling work and caregiving. It is a huge load.

Hugs,
Tracie
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Reply by Melinda
26 Jan 2014, 4:47 PM

HI Tracie 
Thanks for your reply and I am sorry for your loss also. It is very kind of you to share
what you went through. It really goes to show that we are not alone in all this.
And I can really relate to the detachment and numbness..exactly what I am feeling now.
Perhaps its a good thing to get all my ducks in a row ..then when the time comes I can just fall apart, knowing its all been taken care of. I know I have alot of pain coming my way.
A bit of background perhaps here to share some more of my life...I lost my first husband when he was only 25. Car accident...I was left with two small boys.  Life went on and I met my second husband. We had two daughters together. Then we divoriced after 15 years. I met my third husband 22 years ago. We had no children.  Then five years ago I suddenly lost my youngest daughter in a car accident. She was only 27. I have never felt a pain like that in my whole life...absolutely horrible..I am still reeling from it. And now I am losing my husband, my best friend and the sadness I feel is over whelming. Today is a sad weeping day for me. Been losing that protective "detachment" lately! :)  Thanks for listening.....
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Reply by marstin
26 Jan 2014, 7:23 PM

Hi Melinda,

Thank you for sharing your life journey. What an incredibly painful one it has been for you. I think that multiple losses alter us in many ways. When I was 26 I lost my boyfriend of about 6 years to schitzophrenia caused suicide. The time leading up to it was horrible and frightening and when he took his life, I actually felt it at that exact moment and how he had done it. It took me over two years to start to rebuild my life and then I suffered a massive heart attack and had to be brought back to life. It was a tough time in my life but fortunately we hadn't had any children although I did have two miscarriages. Soon after my heart attack I met Len and we started our family very soon after. I think I was brought back to do that as I had wanted that more than anything in my life.

I can't imagine the pain of losing a child. I have been close to a few people in my life who have suffered that loss and watched the agony they have gone through for many years. I am so sorry to hear that you have had to face so many painful experiences.

I hope that I haven't stirred up more pain for you by asking questions.  I have found that by sharing our emotions on here, it makes things somewhat more bearable. This place has been my lifeline when I didn't think that I could face another day. It is difficult to explain the emotions to people who have not gone through anything like this. Cancer takes so much away from us as it chips away at the ones we love. I find myself with tears rolling down my face when you talk about losing your best friend. I still miss Len and my mom so much. I remember my brother telling me at the one year point that the mourning should be over and the healing begun.  I don't know where he got his words of wisdom from but it made me want to lash out and ask him what he really knew. His partner is still alive. Experience makes us understand that there is no time limit on grief and no right way to deal with it. We all deal with things in our own time and our own way.

Sending you huge hugs and please keep sharing. Sometimes sharing the load brings a small sense of relief.

Tracie
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Reply by Xenia
26 Jan 2014, 8:29 PM

Dear Melinda:

I have read your messages and the replies from Tracie.  How hard it is on you and how wonderful Tracie is such a big help to you and all of us.  She has been a help to me as I am nursing a palliative care husband of 58 years.  As you say the waiting after a diagnosis is hard.  I am so glad that your husband is not in pain and is coping.  My husband also says he has very little pain and somehow I wonder as he has such a high pain tolerance.

It is so good that your family is there for support as is ours.  Of course John rallies and looks good one day and then not the next and the waiting or putting in time is terrible as we live two lives, one in hope and one in grieving.  John has cancer of the lungs not too bad, congestive heart failure kidnye failure and COPD and diabetes.  To-day I was in a panic as I am sure I never gave him the right amount of insulin and was beating myself up till daughter told me , mom, watch his sugars and do more tests.  I forgot to put on my glasses when I was administrating the insulin so there I am worrying.

Everything can be a worry with a husband when they are so ill and I am glad to see that you have help and are working yet.  This is some help, I send you wishes for comfort and help on this message board and reading the others is also a help.

Take care and email often as it helps.

Xenia
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Reply by Xenia
26 Jan 2014, 8:30 PM

Melinda, I should have said we have been married 58 years and palliative care for the past 5 months.  Sorry

Xenia
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Reply by KathCull_admin
28 Jan 2014, 2:25 AM

Hi Melinda

My heart goes out to you - I so appreciate your openness in sharing your thoughts, fears, sadness and life.  I am not sure about the ‘why’- but opening up to strangers can be easier than talking to close friends and family – we can pour out our hearts on the keyboard. Perhaps part of the reason is that it eliminates the worry of burdening those we love. I also find that writing things down helps me to see things more clearly.

This is a safe place to remove your ‘protective detachment’ when it feels right for you. 

You might find Living with Limited Time: Exploring Feelings, in the Topics secion of the Canadian Virtual Hospice site helpful as it talks about the feelings and thoughts that come when we or someone we care for has serious illness.

Take care Melinda.

Katherine
 

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Reply by NatR
04 Feb 2014, 12:13 AM

Dear Melinda,

i have just read all the posts in this thread and I am so sorry for your situation with your husband.  The mention of "rose-coloured glasses" is pretty hard to deal with as a caregiver, but it's actually a relief to you as well...meaning that your husband is not feeling or dealing with the realities of how sick he is.  That can be a blessing for him, as hard as it is for you....you are seeing the whole hard picture - and you are prepared.

you are an exceptional person.  You are organized, thinking ahead, doing all the caregiving and appointments, and waiting for everything to play out.  It's okay to be ready, it's okay to be prepared, it's okay to write the forum and say things just the way they are....no need to apologise - You do fit in here.

this place is for everyone...on their good days, their bad days, a place where you have company to talk to.

i am so touched to read the replies to your note...both Tracie and Xenia, sharing their personal stories...it's really hard to read what some people go through - and still keep going.  

This is what builds the forum....we come to share, we stay to support, we lean on each other.

wishing each one of you a quiet evening...and sending warm thoughts.
sincerely,
NatR 

 
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