The Post Treatment Funk: A Caregivers Perspective

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Kimba1505
Kimba1505 Member Posts: 557
edited March 2014 in Head and Neck Cancer #1
I am aware this forum is primarily for those with the diagnosis of cancer; and we who love you piggy back on this site to get our own form of support. I am writing this post with the intent of sharing my current experience. It is in no way intended to offend those of you who have had, or are, physically fighting this battle. It is merely the sharing of a point in time of a caretaker’s battle to find her way through a disease that changes so much.
I have found this post treatment time to be, in some ways, the most depleting. Perhaps it is because the former 2 phases (diagnosis and treatment) were so active, that thoughts and feelings were very specific to the task at hand. As a caregiver my role was very clear even if it was a new role from that which I had in my relationship prior to the diagnosis of cancer. It was a shift that I needed to make and made willingly. It was a way to be connected. Now my role has shifted again, but it is a loss of a role. As Mark heals he is highly motivated to reclaim his independence, and his need to be cared for is abruptly ending. Now I am at a loss of two things: my recently acquired caretaking role and the “normal” of our pre-cancer relationship.
I am also aware of how isolated I am. Cancer is isolating. For 3 months our focus has been cancer and the fighting against cancer. I don’t fit in with everyone any more. Treatment days were “exciting” in that I was in a community of people who were in the know. My friends are wonderful, but don’t know, my family is wonderful, but they don’t know either, Mark wants to move away from all of this as much as possible (understandable), you all know, but I am not really WITH you when I sit in front of my computer. There is no going out for lunch, coffee, a drink. There is no hand holding, no hugs, no crying together.
I am aware the new normal will emerge and patience is the task at hand. I am aware that Mark will need to accept his “new self”: how he looks physically, how he functions physically, how he thinks about life, how he recovers from the physical, emotional, mental trauma of all of this. Until then I think I will have to wait…and there will be an aloneness in that.
I am the saddest I have been in this whole process. It all seems to be sinking in. It is ironic as Mark heals and gets stronger; I am depleting and fighting feelings of depression. Over shadowing all of this is my awareness there is no guarantee. All of this pain, all of this upheaval, all of this fighting; and no one, NO ONE, can say, “It will be alright”.
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  • Glenna M
    Glenna M Member Posts: 1,576
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    Funk....
    I think I can understand your feelings. They are similar to the feelings I had when my treatment was finished. I went into a state of mild depression when I knew I should be happy - why??? - because I no longer felt in control, I was no longer fighting this horrible disease and believe me I wanted to keep fighting. No, I didn't want to go through more chemo or radiation but I wanted to do something that made me feel like I was still fighting. Like you, I also missed the people I had met and saw on a daily basis during treatment.

    Please don't feel alone, Mark will still need you, not as much as he did during treatment but he will still need you by his side. I can understand his wanting to get his life back to as normal as possible but you are still a part of that life. You will just be taking on a new role now, his partner.

    I have read your posts throughout Mark's journey and I have never seen a more caring, loving and self sacrificing caregiver. You have done more for Mark than you will ever realize but I'm sure he knows this and will forever be grateful that he had you there fighting along side of him.

    Now is the time that you have to start taking your life back and enjoying all of the things you enjoyed before Mark's diagnosis. Take time for yourself as you need to heal emotionally.

    You're right, no one truly understands how you feel unless they have walked in your shoes. You are also right that there are no guarantees and NO ONE can say "It will be alright". All we can do is pray and enjoy the time we have now.

    My best to you, Kimba, you will continue to be in my prayers.

    Glenna
  • johnlax38
    johnlax38 Member Posts: 136
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    Kimba,
    My heart goes out to

    Kimba,

    My heart goes out to you. My wife has been my caregiver as you have been towards your husband. Don't be depressed, you have so much more to look forward in life. I am still in treatment, I have two chemo therapy to go to still, I went through 8wks of radiation treatment four weeks of chemo already. You can find my whole story in a recent threat named Nasopharyngeal Carcinoma if you want to know more.

    I want to say I could not have gotten through this without my wife. We experienced the same thing you are today and we are getting better. If anything this disease has brought us closer together than we use to be. I have only been married 5 years so I don't know how much credit that holds.

    I wanted to comment positively on some of your comments to give you some reassurance that everything will get better and you are doing and have done everything you can. This is a new phase and both of you will have to adapt, keep your head up.

    You said:
    "As Mark heals he is highly motivated to reclaim his independence, and his need to be cared for is abruptly ending. Now I am at a loss of two things: my recently acquired caretaking role and the “normal” of our pre-cancer relationship."

    I am going through this stage now. I am getting stronger and I require less "hand holding" than before. This is a good phase to be in and you should embrace your husbands feelings. I know it's super hard to let him be independent because you programmed yourself to be that caregiver. Keep an eye on him and don't let him do to much. I try to do my old chores around the house to help my wife, but I feel I go to far sometimes. My wife has to talk me into sitting down and resting again. I guess its an up hill battle but what you are going through I would say is normal. Again, supporting him is going to make him feel great, you have done a great job so far...keep your head up :)

    You said:
    "Cancer is isolating. For 3 months our focus has been cancer and the fighting against cancer. I don’t fit in with everyone any more."

    I feel the same way, I have been home for three months and September will be my fourth. I can't speak to your side but as the patient it's hard to see others that I use to interact with all of the time. I often cry because I'm so happy to see them, it's very emotional. I think you should push yourself to interact with your "peeps" more so that you feel more normal than you do now. You had to isolate your self because the most important thing was getting your husband healthy. My wife has made the same sacrifice and I push her to do the same.

    You said:
    "I am aware the new normal will emerge and patience is the task at hand. I am aware that Mark will need to accept his “new self”: how he looks physically, how he functions physically, how he thinks about life, how he recovers from the physical, emotional, mental trauma of all of this. Until then I think I will have to wait…and there will be an aloneness in that."

    I can understand this feeling. I had to fight with the way I look now, I lost my beard which was part of my identity. I can't grow it back still so I feel a peace of me is still missing. I'm weak, I have a hard time lifting things with two hands that I could with one before this started. I have accepted these side affects and I am working to defeat them. I'm sure your husband will do the same. Don't feel alone in this period, embrace your husband as much as you can. You still play a vital role in his recovery just by "being there" for him. I can vouch for that, my wife is less active in taking care of me but just knowing she is there is calming and positive. Keep your head up, you are not alone :)

    You said:
    "All of this pain, all of this upheaval, all of this fighting; and no one, NO ONE, can say, “It will be alright”."

    Say it loud and proud! It will be alright in the end but it will be different. Life is going to change and we, the team (patient and caregiver), need to understand this. I have had several heart to hearts with myself about the future and I know it will never be the same. This has helped me cope with your statement, because those are the exact words I have spoken to my wife and my doctors. You are right, no one can simply just say it will be alright. You have to make it alright and so does your husband, and that state of mind of being alright may be different from what normal use to be.

    Your comments were not offensive, they were educational. I hope I have not offended you, my goal was to reassure you that you are doing everything right and to not put your head down.

    Best wishes to you and your family.

    John
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Kim - But You Are Part of Our Family
    Even though your role was one of a caregiver, you have endured the battle as we all have.

    You have gained experience, knowledge, sorry and joy as we all have.

    Your role on here has changed as well....you now can also offer your caregiver skills and expertise to others, the new members of this exclusive club.

    Don't think you are getting away with all of that knowledge and history so easily young lady....;)

    Stay involved, if not here, at your local cancer facility..people do still need your skills.

    BTW, there are no guarantees for any process of life and health.

    Best,
    John
  • MarineE5
    MarineE5 Member Posts: 1,031 Member
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    Adapt. Improvise, and Overcome
    Kimba,

    I can't add much that has already been presented here, all good advice. I tend to refer back to military terms : ) as you already know. My Marine brother ( Skiffin16 ) will agree when I say, we all have to Adapt, Improvise, and Overcome what we have been thru. That is not only for the Patients of this, but the Caregivers as well.

    For the past several months, your schedule has been running at warp speed, juggling a job, making meetings with the Doctors, going to treatments and then having to get home to take care of other matters as well. The patient is the warrior in the battle, but the caregiver becomes the Commanding Officer in Charge of everything else.

    Then there is the sudden period that we as patients and caregivers face after the last treatment. Where are we going from here ? What's my next assignment? what, I don't have to do anything next week ? Please consider this a Rest and Recouperation, time to recharge your batteries. You both deserve it, and don't beat yourself up. As a patient, I was more then happy to have my wife take the wheel and control everything. She said that my job was to get better, nothing else. I am a lucky man. So is Mark. You have given much of your time to him. If I remember correctly, there are a couple of other people that count on you as well.

    Something that I once read somewhere was along these lines. " Even if you think because there are millions of people in this world and you think you don't count. Somewhere in this world, you are the world to at least one person." You have had the wheel for most of the journey, and may be tired. Let Mark take the wheel for awhile and you take a rest for a spell. Then, both of you get on the road of life together once again.

    My Best to Both of You and Everyone Here
  • kimmygarland
    kimmygarland Member Posts: 312
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    Skiffin16 said:

    Kim - But You Are Part of Our Family
    Even though your role was one of a caregiver, you have endured the battle as we all have.

    You have gained experience, knowledge, sorry and joy as we all have.

    Your role on here has changed as well....you now can also offer your caregiver skills and expertise to others, the new members of this exclusive club.

    Don't think you are getting away with all of that knowledge and history so easily young lady....;)

    Stay involved, if not here, at your local cancer facility..people do still need your skills.

    BTW, there are no guarantees for any process of life and health.

    Best,
    John

    ENJOY IT
    Kim,

    I so relate to what you are saying. As my husband's caregiver, when his treatment was over I was so glad - but lost too. It has been 8 months since treatment ended and I am still getting over watching his every move, what he eats, how much, have a temperature?, throat hurt? port isn't red is it? stomach upset? did you take your meds? All those things... Also, people do not understand, especially this kind of cancer treatment. They think since the treatment is over, all is well. They don't understand there are lifelong side effects from it. I too find myself sad, missing our old life, and waiting for the other shoe to drop.

    Having said that - the other shoe did drop. Last week we found out he has what they think is a reoccurrence (biopsy 8/18) - SO... ENJOY this time when he is disease free and "healthy" because it literally could end tomorrow. I wish I had spent less time worrying and more time enjoying.
  • stevenl
    stevenl Member Posts: 587
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    Skiffin16 said:

    Kim - But You Are Part of Our Family
    Even though your role was one of a caregiver, you have endured the battle as we all have.

    You have gained experience, knowledge, sorry and joy as we all have.

    Your role on here has changed as well....you now can also offer your caregiver skills and expertise to others, the new members of this exclusive club.

    Don't think you are getting away with all of that knowledge and history so easily young lady....;)

    Stay involved, if not here, at your local cancer facility..people do still need your skills.

    BTW, there are no guarantees for any process of life and health.

    Best,
    John

    The new me
    Hi Kim,

    I can relate to your feelings through my own experience with my wife. She was like you, very loving and caring and always by my side. I tried to go back to work in mid July and it was a bad decision. I still do not have the muscle built back to withstand laying brick in the heat here in Texas. 102 today with a heat index of 108 to 110. Brutal.
    My point is that I was trying to be who I was before all of this, independent. I am not strong enough yet. Thus, frustration and depression set in. I felt like I failed and was of no use to any body for anything. Make no mistake, Mark needs you now more than he is willing to admit. I can say this because it took my wife to convince me that I was depressed and that I was still good for something. So hang in there and just be as supportive as you can. Simple things like how I look now really affected me. 230# to 175, that really bothers me. I have always been in very good shape and it is just such a drastic change it's hard to accept. My wife convinced me I needed more time. I am seeing a Physical therapist 3 times a week now to help speed up my recovery. Mark will try like me to move as fast as he thinks he can, and he may be trying to do too much too soon. That's where Kim becomes the strength for both of you if he does nave a setback like me. Then again he may not have a setback like I did but he still needs you, don't ever think he doesn't. I'll be praying for you both and sending positive thoughts your way. Step out and do a few things for yourself.

    Take Care,
    Steve
  • CLRRN
    CLRRN Member Posts: 127
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    Our funk continues...
    I completely share your sentiments. Mike is almost 7 weeks post treatment and I have never felt more isolated. I continue the caregiver role but I'm not needed as I was initially- throughout the brunt of the treatment and several weeks post.

    Mike too is getting stronger but the isolation is still there. I'm anxiously awaiting the day when we can share/sit down at a meal together. That's been the most difficult part as he LOVES food and misses eating immensely. In there interim, I continue to eat secluded in the company of our two dogs.

    As I adapt to my (our) new normal, know that we as caregivers can be support for one another and know that I'm here :)
  • PattyNC
    PattyNC Member Posts: 65
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    I'm a caregiver too (my brother had modified radical neck in 06)
    You need support too and don't be afraid to reach out for help. Talking and reaching out are essential for your own health now so you are making a move in the right direction by posting on this board.
  • PattyNC
    PattyNC Member Posts: 65
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    CLRRN said:

    Our funk continues...
    I completely share your sentiments. Mike is almost 7 weeks post treatment and I have never felt more isolated. I continue the caregiver role but I'm not needed as I was initially- throughout the brunt of the treatment and several weeks post.

    Mike too is getting stronger but the isolation is still there. I'm anxiously awaiting the day when we can share/sit down at a meal together. That's been the most difficult part as he LOVES food and misses eating immensely. In there interim, I continue to eat secluded in the company of our two dogs.

    As I adapt to my (our) new normal, know that we as caregivers can be support for one another and know that I'm here :)

    My brother's name is Michael
    I joined the site when he was diagnosed ... but haven't been active till now. He just lost his job for the first time since he was 18 (he's 53 now). Had to move in with my husband and myself. We don't know now if he will be able to find another job since he is a shadow of his old self. Also, the radiation caused his lower jaw bone to deteriate so badly he can't use dentures ... so no uppers or lowers. But his PET in Oct 09 said he was cancer free, so we count our blessings. Forgot to add, today is his BIRTHDAY (I saw where it is also Obama's).
  • SIRENAF42
    SIRENAF42 Member Posts: 202
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    My caregiver - mom
    Reading your post, made me realize I never thought about what my mother must of went through after I came home from my treatments.... I, like your partner, wanted my life back to normal and just assumed she was doing the same. Im going to call my mom. You have made me realize that she fought right along with me, and probaby still is and I never realized. THANK YOU!!!

    God I love this site :)

    Sirena
  • carolinagirl67
    carolinagirl67 Member Posts: 153
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    Caregiver
    Kimba,

    I am a caregiver. My husband has been battling this for over a year now. We are starting our third round of treatment and he is terminal. I feel your pain. If you want to follow my blog, it might help you know there is someone who shares your thoughts. Hang in there.

    http://summharleygolfer.blogspot.com/

    Donna
  • davidgskinner
    davidgskinner Member Posts: 81
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    Not much to add
    Kimba,
    You describe so well what the end of treatment and the "in between" place is like. I have been on this site for a while and have never considered you as someone who is going through something significantly different than me because I have cancer and you are a caregiver. The loss, the uncertainty, and all the isolation you so perfectly describe is just what is has been like for me as well. Mark may be tougher than the rest of us, but somehow I doubt it. He's going to have a moment at some point when it all just stares him in the face and the armor falls to the ground in a heap. Then you can cry together.
    After that, you'll get up together and go onto to the next thing that needs to be done. In the meantime be sure to take care of yourself...
  • Greg53
    Greg53 Member Posts: 849
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    Caregiver
    Kimba,

    I am a caregiver. My husband has been battling this for over a year now. We are starting our third round of treatment and he is terminal. I feel your pain. If you want to follow my blog, it might help you know there is someone who shares your thoughts. Hang in there.

    http://summharleygolfer.blogspot.com/

    Donna

    Kimba
    Kim,

    There is no way you could offend anyone here with all the support you've offered for everyone on this site along what a rock you've been for Mark. I always look forward to seeing your posts, for they certianly brighten my day everytime I read them. And as John said - You are one of us. Very few of us will probably meet one another from this site, but I still consider the people here as one of the things that helped me from getting depressed during the bad times.

    For me those worst times happened about the same time as you and Mark are in now. I too was trying to get my independence back and I don't think my wife understood at the time. I quickly learned she was got me thru the tough times, and I quickly eased up on my persistance to get back to the old me. My family and friends have been great but like you and others have said they expected me to be my old self as soon as I was done with treatment. As much as I wanted to be my old self then, I finally realized I wasn't and wouldn't be the old me. I guess I'm saying it will get better and everyone is here for you like you've been here for us and Mark.

    Positve thoughts coming your way!
    Greg
  • Scambuster
    Scambuster Member Posts: 973
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    Hi Kim,

    Sorry to hear you are going through the blues but as all above have said, not uncommon. I think from the patient side, about 3 months out, we went home to Australia for Vacation which was sort of a turning point when we regained much of our pre 'C' back. I recall I was probably grouchy, and annoyed at unwarranted attention & checking from my wife. I was fed up with everything and she probably was the brunt of that so you have to allow Mark some space to find his way to vent and understand it's just his nasty hangover from the whole ordeal he is trying to deal with. He will come the full circle in time, but give it some time.

    My caregiver wife was kept busy with our 2 little kids and when we did go home for a break, I went off and did a lot of my own things and also started swimming, did some Pilates classes and had coffees with old friends.

    When we came back home to China, I started work and we fell back into our old routine. It wasn't immediate and things area a little different but absolutely fine.

    I was thinking if you could take a short break together or even go yourself, to have a little time out, might be in order. Then I suppose figure how you can keep yourself busy doing what 'Kim' did before, and start to pick up the old thread of life. Call a friend and meet for coffee or lunch with the girls.

    Exercise is very important Kim and can help clear your mind and refresh you. Can you try going to the Gym or doing your own workout (Walks/ Runs/Biking), do it with a friend and share your experience. It's time for some 'Kim' time now so let yourself out and start or restart some little projects or interests to rebalance you life. You will get through this phase Kim. Thanks for sharing Kim and just know the gang are all here for you.

    Scam
  • wifeforlife
    wifeforlife Member Posts: 189
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    Caregiver
    Kimba,

    I am a caregiver. My husband has been battling this for over a year now. We are starting our third round of treatment and he is terminal. I feel your pain. If you want to follow my blog, it might help you know there is someone who shares your thoughts. Hang in there.

    http://summharleygolfer.blogspot.com/

    Donna

    take care
    Question: How can you tell someone is a good caregiver?... Answer: when they are on a website that offers a caregiver discusion board and they spend all their time on the cancer decusion board...trying to learn how to help someone else.
    Question: How do you get back to life as before cancer? Answer: you don't

    Kimba.. all I can do is the same thing the patients do on here... and that is share my experience. I have found that cancer has taken many things from both my husband and myself.. But above that it has brought things into our life... more emotion, more caring, more enjoyment of the small things.
    It's okay to feel sad... you have not let yourself experience this because you have had to be strong...now I think you will find it will subside and a new normal will sneak in quietly. However I should warn you that the nerves will come in waves...test times are bad... new side effects are bad... But on the flip side..his eyes won't be clouded with pain and he will still look at you the same new way he has been since the diagnosis.. he will still randomly tell you he loves you with the feeling that isn't from habit.

    My husband finished his treatment in April .. since that time I have pesonally met two people going through this in my every day life... and have walked with them. that helps me.

    I don't know if these thoughts have helped... but you aren't alone.

    loving thoughts. Wifeforlife
  • kimmygarland
    kimmygarland Member Posts: 312
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    Funny Coincidence
    that this was posted.... when I got home from work yesterday, there were a dozen roses and a card from my husband telling me how much he loved me and that even though I may not think so, he DOES realize how much I do and have done for him. I was so shocked, as he never has done stuff like this in the past.

    THIS Part of the "new normal" I like!

    We are both working our way through this fight one day at a time and learning as we go.
  • Kimba1505
    Kimba1505 Member Posts: 557
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    Funny Coincidence
    that this was posted.... when I got home from work yesterday, there were a dozen roses and a card from my husband telling me how much he loved me and that even though I may not think so, he DOES realize how much I do and have done for him. I was so shocked, as he never has done stuff like this in the past.

    THIS Part of the "new normal" I like!

    We are both working our way through this fight one day at a time and learning as we go.

    Wind in my sails.
    You all are incredibly amazing in your responses to my current state. These are not feelings I want to be having, but denying them will only hurt, not help. I am forever grateful to all of you and this message board for being there to hold me up, when the only other alternative would be to fall down. (Not an option) I CANlook at this all as a process, and this time will pass; and Skiffin, your words resonate: there are no assurances in any aspect of life or health.
    It is a strange dilemma of letting what will be, be; and fighting hard for the desired outcome. Many of you, like me, were probably taught growing up, that if you work hard enough, fight hard enough, you can achieve anything…yes, they said ANYTHING. There should be a little disclaimer to that statement: “except when it comes to your children, your marriage, and cancer.”
    I know I will get the wind back in my sails. I know I need to put the Kim things back in my life, and I thank all of you for the reminder, and the permission. It is a time of reorganizing, even if Mark and I are moving at different rates.

    Sirena, I want to say to you, I love this site too. I am sure your mom was glad to hear from you.

    Kimmygarland, I want to say to you, I am thinking of you and your husband; and I have heard many times that what shows on scans does NOT show on biopsy, and I am hoping this for you both. I have sent a prayer. Your words, “I wish I had spent less time worrying and more time enjoying.” Words to live by. Hmmm…flowers…I asked Mark to read this posting and its responses…something I rarely do…flowers would be lovely.

    Glenna, you are so solid. Your validation means a lot to me. You made me cry…don’t worry…I need it.

    Johnlax38, Are you really a pirate?? I love pirates…and I loved your post…again very validating, supportive, normalizing and helpful. My best to you and your wife as you finish your last two chemos. I hope you both can navigate the PTF (Post Treatment Funk), but it seems very common, and perhaps unavoidable.

    Skiffin, I will stay involved with giving back. Energy is low now for contributing…but I will get on the horse , bike, whatever, again. You are a staple of these boards.

    Marine, you are my cyber-rock…but you already know that. :)

    Stevenl, you have always been very open about sharing your humanness…it creates great understanding for all of us. Thank you.

    CLRRN, I have to tell you, I have never thought more in my life about getting a dog. The isolation is rough, and I wish I had the energy to overcome it. I feel like I need to be kidnapped, because to get out on my own…it may never happen.

    Davidgskinner, thank you for seeing we caregivers as one of you all. I cannot speak for others, but Mark is a part of me…I have always seen this as a “we” process.

    PattyNC, You are a wonderful sister. Stay connected here. Happy Birthday to your brother, and the Prez too.

    Carolinagirl67, I am so sorry you and your husband are facing this disease as terminal. It is what lurks in all of our minds. Please let us know how we can help…and find joy in every day…as all of us should. You both help us remember this.

    Greg53, you are a solid part of these boards as well, and I too look for your posts. I like your new picture. 53 is my déjà vu number (A number that reoccurs in my life over and over) Strangely, when Mark turned 53 in '09, I said, “this is going to be a good year for us”. At age 53 he was diagnosed with cancer. When it is all said and done…perhaps it will have been a good year for us. (Glass ½ full? v. Glass 1/2 empty).

    Wifeforlife, I have a friend who is a nurse and she has been the most helpful person for me to talk to. Not only is she a very dear personal friend, she is not put off by all the medical stuff that comes along with my life right now, and she takes a genuine interest. I just sent her a card the other day thanking her for being such a great friend. “a new normal will sneak in quietly” : I will be watching closely for this.

    Scam, I did not know you are originally from Australia. I bought Mark an Aussie style hat for wearing when he had to walk outside in the city. It shadowed his neck perfectly. I called it his “walk about” hat. :) Thank you for sharing your story of yours and your wife’s process of getting “back to normal”. I see now we must take a trip to Australia . Yes, the gym helps…but sometimes when I work out this fighter in me comes up to get through the work out…then this flood of emotions come up. I almost had to stop yesterday, walk out of the gym and let the tears flow. If my kids would not have been with me I probably would have…I did not want to put them in a place of being worried or having to take care of their mom.

    Now that I have earned the award for the longest post ever...I wish only the best for everyone here,
    Kim
  • johnlax38
    johnlax38 Member Posts: 136
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    Kimba1505 said:

    Wind in my sails.
    You all are incredibly amazing in your responses to my current state. These are not feelings I want to be having, but denying them will only hurt, not help. I am forever grateful to all of you and this message board for being there to hold me up, when the only other alternative would be to fall down. (Not an option) I CANlook at this all as a process, and this time will pass; and Skiffin, your words resonate: there are no assurances in any aspect of life or health.
    It is a strange dilemma of letting what will be, be; and fighting hard for the desired outcome. Many of you, like me, were probably taught growing up, that if you work hard enough, fight hard enough, you can achieve anything…yes, they said ANYTHING. There should be a little disclaimer to that statement: “except when it comes to your children, your marriage, and cancer.”
    I know I will get the wind back in my sails. I know I need to put the Kim things back in my life, and I thank all of you for the reminder, and the permission. It is a time of reorganizing, even if Mark and I are moving at different rates.

    Sirena, I want to say to you, I love this site too. I am sure your mom was glad to hear from you.

    Kimmygarland, I want to say to you, I am thinking of you and your husband; and I have heard many times that what shows on scans does NOT show on biopsy, and I am hoping this for you both. I have sent a prayer. Your words, “I wish I had spent less time worrying and more time enjoying.” Words to live by. Hmmm…flowers…I asked Mark to read this posting and its responses…something I rarely do…flowers would be lovely.

    Glenna, you are so solid. Your validation means a lot to me. You made me cry…don’t worry…I need it.

    Johnlax38, Are you really a pirate?? I love pirates…and I loved your post…again very validating, supportive, normalizing and helpful. My best to you and your wife as you finish your last two chemos. I hope you both can navigate the PTF (Post Treatment Funk), but it seems very common, and perhaps unavoidable.

    Skiffin, I will stay involved with giving back. Energy is low now for contributing…but I will get on the horse , bike, whatever, again. You are a staple of these boards.

    Marine, you are my cyber-rock…but you already know that. :)

    Stevenl, you have always been very open about sharing your humanness…it creates great understanding for all of us. Thank you.

    CLRRN, I have to tell you, I have never thought more in my life about getting a dog. The isolation is rough, and I wish I had the energy to overcome it. I feel like I need to be kidnapped, because to get out on my own…it may never happen.

    Davidgskinner, thank you for seeing we caregivers as one of you all. I cannot speak for others, but Mark is a part of me…I have always seen this as a “we” process.

    PattyNC, You are a wonderful sister. Stay connected here. Happy Birthday to your brother, and the Prez too.

    Carolinagirl67, I am so sorry you and your husband are facing this disease as terminal. It is what lurks in all of our minds. Please let us know how we can help…and find joy in every day…as all of us should. You both help us remember this.

    Greg53, you are a solid part of these boards as well, and I too look for your posts. I like your new picture. 53 is my déjà vu number (A number that reoccurs in my life over and over) Strangely, when Mark turned 53 in '09, I said, “this is going to be a good year for us”. At age 53 he was diagnosed with cancer. When it is all said and done…perhaps it will have been a good year for us. (Glass ½ full? v. Glass 1/2 empty).

    Wifeforlife, I have a friend who is a nurse and she has been the most helpful person for me to talk to. Not only is she a very dear personal friend, she is not put off by all the medical stuff that comes along with my life right now, and she takes a genuine interest. I just sent her a card the other day thanking her for being such a great friend. “a new normal will sneak in quietly” : I will be watching closely for this.

    Scam, I did not know you are originally from Australia. I bought Mark an Aussie style hat for wearing when he had to walk outside in the city. It shadowed his neck perfectly. I called it his “walk about” hat. :) Thank you for sharing your story of yours and your wife’s process of getting “back to normal”. I see now we must take a trip to Australia . Yes, the gym helps…but sometimes when I work out this fighter in me comes up to get through the work out…then this flood of emotions come up. I almost had to stop yesterday, walk out of the gym and let the tears flow. If my kids would not have been with me I probably would have…I did not want to put them in a place of being worried or having to take care of their mom.

    Now that I have earned the award for the longest post ever...I wish only the best for everyone here,
    Kim

    I'm glad my words have given
    I'm glad my words have given you some rest. I wish you and your family the best.

    My wife has a thing for Johnny Dep and Pirates, so I had to photo shop my mug so I can compete!

    So yes, in my spare time I am a pirate, YAARRR!
  • PattyNC
    PattyNC Member Posts: 65
    Options

    Caregiver
    Kimba,

    I am a caregiver. My husband has been battling this for over a year now. We are starting our third round of treatment and he is terminal. I feel your pain. If you want to follow my blog, it might help you know there is someone who shares your thoughts. Hang in there.

    http://summharleygolfer.blogspot.com/

    Donna

    I'm a Carolina girl too (but originally from GA)
    I'm going to take a look at your blog. You and your hubby will be in my prayers. Hope I am posting threads correctly .... but I'm brand new to boards (and haven't done any chat) so I'm kinda feeling my way around. I am editing this post to say I was trying to respond to Carolina Girl ... looks like I might not have done it correctly, but I will keep trying to learn the ropes.
  • Pumakitty
    Pumakitty Member Posts: 652
    Options
    Kimba1505 said:

    Wind in my sails.
    You all are incredibly amazing in your responses to my current state. These are not feelings I want to be having, but denying them will only hurt, not help. I am forever grateful to all of you and this message board for being there to hold me up, when the only other alternative would be to fall down. (Not an option) I CANlook at this all as a process, and this time will pass; and Skiffin, your words resonate: there are no assurances in any aspect of life or health.
    It is a strange dilemma of letting what will be, be; and fighting hard for the desired outcome. Many of you, like me, were probably taught growing up, that if you work hard enough, fight hard enough, you can achieve anything…yes, they said ANYTHING. There should be a little disclaimer to that statement: “except when it comes to your children, your marriage, and cancer.”
    I know I will get the wind back in my sails. I know I need to put the Kim things back in my life, and I thank all of you for the reminder, and the permission. It is a time of reorganizing, even if Mark and I are moving at different rates.

    Sirena, I want to say to you, I love this site too. I am sure your mom was glad to hear from you.

    Kimmygarland, I want to say to you, I am thinking of you and your husband; and I have heard many times that what shows on scans does NOT show on biopsy, and I am hoping this for you both. I have sent a prayer. Your words, “I wish I had spent less time worrying and more time enjoying.” Words to live by. Hmmm…flowers…I asked Mark to read this posting and its responses…something I rarely do…flowers would be lovely.

    Glenna, you are so solid. Your validation means a lot to me. You made me cry…don’t worry…I need it.

    Johnlax38, Are you really a pirate?? I love pirates…and I loved your post…again very validating, supportive, normalizing and helpful. My best to you and your wife as you finish your last two chemos. I hope you both can navigate the PTF (Post Treatment Funk), but it seems very common, and perhaps unavoidable.

    Skiffin, I will stay involved with giving back. Energy is low now for contributing…but I will get on the horse , bike, whatever, again. You are a staple of these boards.

    Marine, you are my cyber-rock…but you already know that. :)

    Stevenl, you have always been very open about sharing your humanness…it creates great understanding for all of us. Thank you.

    CLRRN, I have to tell you, I have never thought more in my life about getting a dog. The isolation is rough, and I wish I had the energy to overcome it. I feel like I need to be kidnapped, because to get out on my own…it may never happen.

    Davidgskinner, thank you for seeing we caregivers as one of you all. I cannot speak for others, but Mark is a part of me…I have always seen this as a “we” process.

    PattyNC, You are a wonderful sister. Stay connected here. Happy Birthday to your brother, and the Prez too.

    Carolinagirl67, I am so sorry you and your husband are facing this disease as terminal. It is what lurks in all of our minds. Please let us know how we can help…and find joy in every day…as all of us should. You both help us remember this.

    Greg53, you are a solid part of these boards as well, and I too look for your posts. I like your new picture. 53 is my déjà vu number (A number that reoccurs in my life over and over) Strangely, when Mark turned 53 in '09, I said, “this is going to be a good year for us”. At age 53 he was diagnosed with cancer. When it is all said and done…perhaps it will have been a good year for us. (Glass ½ full? v. Glass 1/2 empty).

    Wifeforlife, I have a friend who is a nurse and she has been the most helpful person for me to talk to. Not only is she a very dear personal friend, she is not put off by all the medical stuff that comes along with my life right now, and she takes a genuine interest. I just sent her a card the other day thanking her for being such a great friend. “a new normal will sneak in quietly” : I will be watching closely for this.

    Scam, I did not know you are originally from Australia. I bought Mark an Aussie style hat for wearing when he had to walk outside in the city. It shadowed his neck perfectly. I called it his “walk about” hat. :) Thank you for sharing your story of yours and your wife’s process of getting “back to normal”. I see now we must take a trip to Australia . Yes, the gym helps…but sometimes when I work out this fighter in me comes up to get through the work out…then this flood of emotions come up. I almost had to stop yesterday, walk out of the gym and let the tears flow. If my kids would not have been with me I probably would have…I did not want to put them in a place of being worried or having to take care of their mom.

    Now that I have earned the award for the longest post ever...I wish only the best for everyone here,
    Kim

    I understand
    Kimba,

    I can relate to how you feel. I have been my dad main caregiver through this process. Now that he is out of treatment I feel the same things as you. Only with Mark he is trying hard to recover and it seems like in the last week my dad is going in the opposite direction. He is dizzy and complaining about being weak. When I try to push him to do things for himself I feel like a mean person. I feel that I will never get my life back and I have not been able to have a day that I am calm and not waiting for something to happen. Or every little ache makes me worry that something is wrong.

    Like you I feel alone. I used to be able to spend the whole day out with friends and now know that is not possible. I am only 35 years old but I feel that in many ways I have become the parent. I then have these thoughts and feel guilty. I know that my parents would do the same for me. Everyone says that I need to think of myself, but that is not really possible when all you do is work and be the caregiver 24/7.

    I have accepted that my dad will have a new normal, but I do not think that he has and that is very hard to deal with.

    Thank you for posting what you did. I makes me feel not so alone.

    Kathy