Progress

Moki said:

Thinking of you

Michelle

I am sending good vibes to you. I cannot imagine how tough it should be for you. I am 7 weeks since my radiation ended, I did not need chemio, I lost only 1 or 2 lbs and I still feel tired and anxious. Maybe  he needs some education on the matter, maybe he is overwelmed and he reacts like that, maybe he needs to come to therapy with you. Are you able to do a week-end away together and try to relax?

Depression is a very serious thing. I am glad to hear you recognize it and will be seeing a therapist.  3 years post, I still get a little help from my BFF, xanax.  I wish your husband were more understanding. Unfortunately, you probably can't change him.  This is also a tough journey for those that love us and our caregivers. Hopefully, the therapist will be able to give you some insight on how best to deal with your situation. 

Wishing you the best,

Candi

Share some of the posts on this site with your husband. If he can see what others have experienced, he may understand your situation better. Most people think once treatment is over, you're going to feel better soon. I thought something was wrong with me because the doctor said I'd  feel better in 4-6 weeks and yet I felt awful for three months. My last treatment was Oct. 5th, so I'm a little ahead of you. I still get tired easily, have trouble with a sore tongue, and trouble eating, but I am getting better. Both radiation and chemo have side effects that happen after treatment is done. You've been through a lot. The oncology nurses all told me the treatment for head and neck cancer is one of the most intense. Recovery is very slow. You are not unusual. Both you and your husband need support from as many sources as possible now -family, friends, church, co-workers, therapists, and your cancer team. You'll also find a great source of support on this site. I will add you to my prayers.

Michellle, I haven't posted a lot lately but I "watched" you go through your treatment, posted a couple of messages to you as you were going through treatment and I know it was tough as I basically went through the exact same treatment.   

The big difference between the two of us is that my caregiver, my wife of 33 years, was there for me every step of the way.  when I got depressed during the fiinal weeks of treatment it was my wife who told the doctor that she thought I was depressed.   She is a nurse and I can't imagine having to try and go through what we all went through without her in my corner pulling for me, and pushing me forward when I wanted to stay still, and always being there for me.  I know this whole ordeal is tough on everyone, with the caregiver and patient, but the vow was for better or worse, and clearly this is about as bad as it gets and when you really need support..  

you're only two months out of treatment.   My throat hurt with every bite for the first 4-5 months following treatment.  It will get better but as you know it is a slow process and I know you ( and your husband ) are ready for this to over and back to normal.  You will get there, your new normal may be a little different than your old normal but hopefully your new is like many of our new and is very close to the old and life is really good.  My mouth is still really sensitive to spicy or alcohol but nothing I can't live with.

I hope the therapy helps with your depression   I started taking Lexapro when I was in treatment and still take it today as I feel so good I am afraid to change anything. You will continue to improve and one day you eat and you notice your throat doesn't hurt anymore.   Then you'll notice your saliva is noticeably better.   Your energy level will return, then you get more active and have even more energy.     It's all so gradual that one day you'll just notice that all the side effects you have been dealing with are just better.   Maybe not perfect but from where you were a few months ago, a very dramatic improvement.

good luck as you continue the road to recover.   It's a long trip but compared to what you've been through its the sunny part of the trip that you have left

You went through a lot, 7 weeks of chemo and 33 RAD. I never had to have chemo or RAD, but I did have the surgery and neck dissesion and they took 86 glands and my larnyx. It's been 15 months and I had it so much easier than most on CSN had to endure. I have to think about everytime I swallow so it goes down. I fell like my neck is being pulled apart from the center out to my ears and that will never go away. 

You are doing very good for the time frame. I was told it would take at least a year before I got back to what my "New Normal" will be.  No you are not the same Michelle, and you will never be that exact same person because of what you all went through. You are Alive, and you are fighting to get back to what will be your new normal and that will take time. We all have to heal at are own pace, because we have differant other health and family issues to go through. 

If my wife had not supported me I would not be anything close to where I am now. I wasn't sure how she would see me with this hole in my neck that she has to look at. Would I embarrass her being with me, and everyone stareing at me. Then when I would talk, I have to put my thumb over the hole to say anything. That all went through my head, and so much more. I didn't even get to cover it for the first 30 days. But I was alive, and that is all that mattered to her.

Let your husband know you want to get your old self back even more than he does, and with his help and some time you both will have her back. It will never be the same, but it can get very close.  Being depressed is normal with this and you new you were getting there so you are getting the help. That shows me you are doing good and on top of your recovery and doing the right thing needed. 

I think he is sad and feels pain for you but just does not know how to deal with it, and let you know he is scared too. This is very hard on the caregiver/loved one. They know you hurt but they can't do much to help so it hurts them too.

Maybe if he has some free time he might read some of the other posts and see we all go through this the best we can, but we are all differant. I'll keep you both in my prayers. Hope tomorrow is better.

Bill

KB56 said:

Progress

Michellle, I haven't posted a lot lately but I "watched" you go through your treatment, posted a couple of messages to you as you were going through treatment and I know it was tough as I basically went through the exact same treatment.   

The big difference between the two of us is that my caregiver, my wife of 33 years, was there for me every step of the way.  when I got depressed during the fiinal weeks of treatment it was my wife who told the doctor that she thought I was depressed.   She is a nurse and I can't imagine having to try and go through what we all went through without her in my corner pulling for me, and pushing me forward when I wanted to stay still, and always being there for me.  I know this whole ordeal is tough on everyone, with the caregiver and patient, but the vow was for better or worse, and clearly this is about as bad as it gets and when you really need support..  

you're only two months out of treatment.   My throat hurt with every bite for the first 4-5 months following treatment.  It will get better but as you know it is a slow process and I know you ( and your husband ) are ready for this to over and back to normal.  You will get there, your new normal may be a little different than your old normal but hopefully your new is like many of our new and is very close to the old and life is really good.  My mouth is still really sensitive to spicy or alcohol but nothing I can't live with.

I hope the therapy helps with your depression   I started taking Lexapro when I was in treatment and still take it today as I feel so good I am afraid to change anything. You will continue to improve and one day you eat and you notice your throat doesn't hurt anymore.   Then you'll notice your saliva is noticeably better.   Your energy level will return, then you get more active and have even more energy.     It's all so gradual that one day you'll just notice that all the side effects you have been dealing with are just better.   Maybe not perfect but from where you were a few months ago, a very dramatic improvement.

 

good luck as you continue the road to recover.   It's a long trip but compared to what you've been through its the sunny part of the trip that you have left

Michelle:

After reading your post my first instinct was to attack your F*%&$(* husband.  Instead I would echo the words of KB56.  I would read and reread his post.  He really puts things into perspective in a genuine and tender manner.

Give yourself permission to be sad, weak, sick, and tired.  These are all very real feelings and at the stage you are at I to was feeling all of them.  I cried so much a couple of months after treatment because I felt I had suffered enough and it wasn't getting better fast enough.  My husband was and is amazing in terms of being patient.  I felt like a bad wife and thought he would never again have the woman he so loved.  I am a very bubbly person and always on a fun quest and for months I hardly talked, and my free spirit was gone, and I feared never to return.

The oncology nurses whom I becames very friendly with told me Michael was the exception and that many of the women undergoing treatment like me had unsupportive and not particularly patient or helpful husbands.  Primarily because they aren't accustomed to being caregivers.  (Content removed by CSN Support Team) 

 8 months in i'm finally back and feeling happy and fun again.  We have our lives back now.  

Its going to happen for you to.  Hang in there friend.  Demand that he lighten up and sacrifice the time needed for you to feel whole again before you start taking care of him again. Isn't this part of loves sacrifice.  It needs to be a two way street.

The mere fact that you lost SO much weight, further weakening you, and are still unable to enjoy food is very depressing.  Food is one of lifes greatest pleasures and its depressing not being able to enjoy it.  It will come in time but its normal to be depressed under the circumstances.  I find myself eating for texture now.  I eat a lot of soup and can't taste a thing but I put tortilla chips on everything and the combination of warm soup and crunchy chips is very satisfying. Progress will come in baby steps, but I promise IT WILL COME.

I'm so glad you are going to counseling.  Take care of yourself.

Shirley

Shell_7801 said:

Thank you

I know I can count on all of you here to understand my mindset.  Thank you so much.  

I am trying so hard and have realized that I can only move on happily emotionally once I accept the fact that I could die in a couple years.  If I am not in the 70% of survivors I want to be prepared and at peace with that and THEN I can embrace each day with thankfulness and joy.  Does that make sense? I'm hung up on the dying part right now and need to move forward. 

I plan to bring my husband next week to my therapy session so he can get help and understanding as a caregiver.

I love each and every one of you!  

Michelle

I read a lot about the power of the mind: people can cure themselves even when doctors told them they are unoperable. If I were you, I would consider myself cured and I will not go to the dark side. Live everyday to heal yourself, go on alkaline food diet, take anticancer supplements (I take water with lemon and baking soda every morning, tumeric, turk tail mushroom and resveratol everyday), exercise and get healthy. That is what I do. I would not be able to live well thinking about future potential cancer recurrence. I would do whatever possible to live a long life and I need the right mindset to be able to do so.

It is not easy, I struggle with it as as well, but that's my goal and I am determined to get there. 

I am always available for you if you need me

Monica

Sailor123 said:

Michelle I should have made

Michelle I should have made the connection between your recent scan and your depression.  I was a different person at the time of my first post treatment pet scan.  I alienated my best friend and was a paranoid, depressed mess.

Lets face it, this is some scarey stuff.  Facing your mortality at such a young age is terrifying.  I can tell you that as soon as I got the NED phone call I sobbed and then began to relax.  Now I seldom think about the cancer returning, except when I have Doctors appointments or scans.  That scan was probably a huge contributor to your depression.  I hope you get your NED phone call soon.

Love to you.

Shirley

 

Michelle some very wise people here. Tell your hubby you need a bit of time to heal mentally and physically. Take it from a fellow faux cyst buddy. Be kind to yourself. Be careful about being pressured into things you don't want to do lest it stores up resentment later on. You seem very in tune with your hubbys need. He is a lucky man. Does he know how lucky? How in tune is he with yours?

Best from Liverpool UK, Gary     

http://cancersupport.net/

http://www.spohnc.org/

Try to find a local support group where both you and your husband can attend. I think it is really important that others deeply involved with your treatment and recovery are able to assist you in the best way possible.