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Thank you for this forum topic; I never heard of anticipatory grief until a counselor on a cancer support phoneline introduced me to the term. This I've hit the wall coping. The responsibilities, grief and frustration I feel is overwhelming. I am powerless and can do nothing but support my husband, brother, family and children as we watch and wait for the progression of disease. The loss I feel already is staggering. I can't begin to think about the future. I am barely able to deal with the now. I am emotionally exhausted and the worst is yet to come.

On October 5, 2013 my brother (48 yrs) who lives locally, was diagnosed with Stage 4 testicular cancer. Unusual that it was so advanced, but he was in denial of the symptoms. I was devastated, he is my only sibling, single, career military man and it was obvious from the start that he was going to need support scheduling appts and following drs directions; still trying to downplay the seriousness of his diagnosis. Our parents are both 84 years old and feeble.

I got him into Stanford Hospital, he began chemo, and within one week contracted a blood borne infection that almost killed him. ICU for 1.5 months, released from hospital Dec. 3rd with an partially amputated left leg. Spent December working with Stanford to clear up the remaining infection and approve him back into chemo. I remember spending Christmas Eve at Stanford at a plastic surgery appt with him. Meanwhile, I run a small business with my husband which we built around my husband's software design skills and we need to keep that going for necessities like shelter and food for our 16 and 22 year old boys.

On December 27, 2013 my mostly healthy husband (52 yrs) had a stroke at 3am. EMT's called, rushed to hospital for CT scan and tests revealed metastasized Stage 4 lung cancer to his brain. Emergency crainiotomy removed an egg sized tumor from his frontal lobe. We've been granted a miracle in that he still has speech, his personality, motor skills... but he is almost childlike emotionally, intellectually no longer able to work. It was made absolutely clear by some well meaning but very misguided doctors in the first few days after surgery that his cancer is terminal. The best one said "if you think he'll be here next Christmas, you're fooling yourself. He has weeks, maybe months and will die by stroke, seizure or in bed in the middle of the night". Gee. Thanks, doc.

These last few months have been the most horrible, painful, agonizing of my life. I'm running from husband's chemo and radiation to my brother's appts and surgeries, dealing my 16 year old's painful emotions, my parents fears for their son, my husband's fears for himself and us, his confusion and pain, and juggling business projects to contractors. NOTHING IN MY LIFE HAS PREPARED ME FOR THIS!!

Everyone says I'm handling things well and how strong I am. I'm not strong, I'm in survival for my family. They don't see my heart breaking daily for the life that I had with my husband. He used to be my strength and my rock. And now surgery is no longer being considered as part of my brother's treatment plan. My brother is thrilled that there will be no surgery. I am the only family member that understands that we are transitioning to pallative care and there will be no cure for him either.

I cannot believe that only 6 months ago, I had a great life. I know that I will never have that life back, ever. I could use any suggestions to have the strength to keep going; sharing my situation out to this community gives me hope.

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My dear Kimberlyn5, I am just so sorry for your pain and exhaustion and disappointment.

I wish I had an answer to your question but I do know from taking care of my own husband, we stay strong longer than we think we can. However, that being said the wisest advice I have to offer is that you must somehow find a way to take care of yourself....to get rest no matter how impossible it looks, to eat well, and to share your pain. Sharing pain is something you can do here. It is also clear to me that you need some help with all that is on your plate. Can friends help with transports to and from doctors and hospitals? I see you are the only sibling and your parents are unable to assist but you truly need to talk to social services at each of the hospitals to see what services are available to help you. Also to contact community services to see what transportation might be available for your brother's doctor trips. Perhaps a neighbor could make all these calls. I know it is difficult to lean on friends and neighbors but it seems it is essential right now that you do so. Also church groups whether or not you belong to a church. I am not sure how you are keeping a business going right now but certainly understand the need to do so. Have you hired someone to assist there? Are your husband's extended family able to assist in any way even if it is making meals.

I do think self care as much as humanly possible under the circumstances and getting all the help you can get from whoever will help are on the top of the list. I will put my thinking cap on and see what other ideas I can come up with and i know others here will also have support and ideas for you.

I hold you in my heart and in my prayers,

Mary

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Kimberlyn, my dear, I am overwhelmed just reading your story, so I can only imagine how you must feel as you are living it. I hope you will take Mary's suggestions to heart, putting yourself at the top of your priority list.

There are many, many sources of support available to you, but you must have the time and the energy to find them and reach out for them.

I hope you have someone in your circle who can help you in doing some online research, and I hope this post will help you to narrow your efforts. (I suggest that you "bookmark" it as one of your "favorites" so you can return to it as needed):

Caregiving After a Stroke: Suggested Resources

See also Anticipatory Grief and Mourning

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Your story reminded me very much of mine. Without going into details I will only say that in a year and a half I lost four immediate family members. Not "distant relatives". I have been out of my mind with grief and anxiety. Mary made some good suggestions about places and or people to turn to for help. I can say from my own experience that although her suggestions are excellent, we don't live in a perfect world and sometimes we may not have friends that are close enough to do things like give rides to your brother to the hospital. You would think that in a crisis so called "friends" would help, but trust me, human nature being what it is we often find out during a crisis that not everyone wants to help or get involved. It sounds great on paper to ask friends, ask the people at the church even if you don't go there (my experience with this has been people not wanting to help) and as far as neighbors, we live in a society where the old days of neighbors doing things like helping you build a house simply don't exist. People today see life as being an existence by which to live their own life and solve their own problems and by no means do they want to help. Sound cynical? I am only relaying my own experience. And I am just an average person. I do concede that there have been people who have gotten massive support from friends and neighbors and strangers at churches but in reality, these resources can't be relied upon. I am sure you have thought about all the things to help your brother and also your husband. Since you are juggling both of their care giving, you have to be on the ball. And so my guess is that you haven't left many stones unturned. Reality is sometimes we so have to do things alone. Am I suggesting that is a good thing and you just have to suck it up? No, I am being realistic. Supposing this is your situation, I would immediately find yourself a counselor who can be someone that can guide You and support You. I am sure if you had friends and neighbors to help, they would have surfaced by now. You shouldn't have to ask for help when in crisis. If you are close to people, they should offer help. And since none have, you have to start taking care of yourself. Start by hiring a professional to be a support for you during this crisis. A counselor. You don't need a psychologist, you need a social worker who is a clinical social worker and does supportive counseling. There are free support groups for families of cancer patients where you can unload your pain and stroke support groups as well. But with your plate being so full you may not even want to be bothered trying to locate them. So I therefore would suggest you find a social worker who is a clinical social worker and hire this person to help you during this crisis. Like you my life was one way and them boom! It drastically changed unbelievably. So much like you I had some very crude things said to me. Just like you when that doctor said, "if you think he'll be here next Christmas, you're fooling yourself. He has weeks, maybe months and will die by stroke, seizure or in bed in the middle of the night". Your stress level is very high right now as it should be, and your grief very real. That is why you need your Own advocate in the form of a counselor for you. Not "mental health" as in crazy counseling. But supportive counseling. You need someone in your corner and a place where you can unload this pain. I went to a PhD psychologist when my own crisis broke and she was not helpful at all. She had no clue on how to handle my grief. Sounds shocking, doesn't it? Finally I had to fire her. She simply had no clue how to deal with the grieving. Please, please hire a therapist for yourself. Make sure they understand anticipatory grief and grief in general and make sure early on. With the psychologist I just assumed she would. When my 4th family member died and I brought a pillow to the session because I was hysterical and needed it to cry into she said while my face was buried in the pillow hysterical, "You've been through this before". As if losing an immediate family member shouldn't be bothering me since I have been through this before. Unbelievable. I knew then that this PhD was absolutely not a grief counselor or trauma specialist. And I do believe that my last session with her. You can share more here. if you want to, that is an option. So are calling hotlines (just look up crisis hotlines online) and talk to a stranger. I have! By the way, because I took some of Mary's suggestions and gave my spin on them is not a reflection on Mary or her capabilities. It is a reflection of my own experience with her suggestions. And one person's experience does not mean Mary has not offered you some wise suggestions. Please keep us updated and know my heart breaks for you. My mother had a stroke...that was when all the crises started to happen at once.

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OMG, I am so sorry! That IS a lot to deal with at once, any one of those situations (elderly parents, your brother, your husband) would be enough to absorb everything within you to cope with. You ask for suggestions...all I remember from my very hardest times in life is to only deal with today, try not to "borrow trouble" by going to tomorrow on today, AND deal with only what you have to today. I assume you've filed for disability on behalf of your husband...have you also contacted Senior and Disabled Services to find out what assistance there is out there? They're usually a valuable resource or know where to start. Marty posted a list of places to contact somewhere on this site.

Do you have any friends that could help you with running your brother and husband to doctor's appointments? Is your 22 year old in school? If not, perhaps he could be enlisted to help with the driving back and forth, that is when you're not expecting to get "news" from a doctor, but more something routine. It seems just at the time we really need a support group as a caregiver, we have no time for one! When I was in that situation (as caregiver for three years) I laughed at the mere suggestion of driving 100+ miles to the nearest "support group" when what I really needed was someone to come take my spot taking care of my MIL so I could have a full night's sleep or actually get to spend quality time with my then babies! Sure it sounded good to be able to share with others going through the same thing, had we had internet at that time, it would have made a world of difference. It was one of the hardest times in my life but it was also a very special time, if that makes any sense...I wouldn't trade having done it for anything, but gosh it was tough!

My heart goes out to you. Keep posting, expressing yourself here, it does help to have someone who understands. I do hope someone will step up to the plate and help you.

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Thank you for your kind words and great suggestions, everyone. As I was reading and thinking things through, it occurred to me that much of what I'm feeling I've placed on myself. I feel a lot of guilt that I don't want to spend every waking moment with my husband. I require breaks. My heart breaks for our 16 year old son and I want to be both mother and father and do everything I can for him. But I can't keep him from being affected by reality, no matter how much I wish this had not visited his life. I also realized are several things that I'm doing that I can offload....

Being the only driver, I have the authority to say "no" to unnecessary trips. David's bicycle is great alternative transportation for a 16 year old. All other trips are schedule at MY convenience and I have friends that will grocery shop for me. Our 22 year old is overwhelmed with college, but school ends in 4 weeks and then he can help out. There is a new chore chart to help keep things organized. I've asked my best friend to spend some hours each week organizing the medical billing and my admin stuff that never gets done.

Steph.ny your message was so heartfelt. And you totally get what I'm going through. I'm looking at the next 5 years very possibly losing my husband, brother, mother and father. I'm trying to become okay with the "circle of life", but I'm not feeling it. I'm going to make an appointment with a grief counselor through our local hospice. I can see that I need it.

Fortunately we've found an oncology team that is local, brilliant and kind. It's the all the running around for all the specialized services that was crazymaking. My husband and brother are under the care of this oncology team and I think things are going to slow down for the next few weeks as we're in between treatment cycles.

And breathe..... I have time to breathe.

Thanks everyone,

~Kim

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Dear Kim

I'm so sorry. You are being expected to carry too much for one person, but it is as it is. I think you need to come here to talk to the wise counsellors like Mary and Marty and people who have trod the same sad path. You need to try to care for yourself as much as you can as this will help you care for others. Please keep posting.

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Kim

I am so glad you are taking action to find ways to lighten your load. Yes, having a 16 year old free for the summer can help quite a bit and it is probably good for him to be involved also. Yes, breathing is the quickest and easiest stress management tool we have as we tend to hold our breath when we feel stressed and that starts a domino effect in our bodies of changes that only make things worse. So do stop and sit and practice some breathing as often as you can. I use red lights when driving as a reminder or traffic hold ups also.

So glad you have a local and good oncology team and both your brother and husband use the same group. Those things help a lot to minimize communication issues and to stay on top of treatments and appointments. Glad to see you back here. It helps to just share the journey with others who understand and care.

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Kim,

I'm glad you realize you can't do it all and have to pick and choose what is essential to do and what others can take on. Yes the next few years are going to be tough, and the years beyond as you learn to live without the important people in your life. We've all been doing that here but most of us don't have to deal with all of them at once. Continue to breathe, take care of yourself, and remember to take one day at a time.

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Thank everyone! I'd like your opinion, not sure if this is a moral or ethical issue.

When the oncologist made the statement to my brother that "surgery is not indicated in this treatment plan", it was confirmed to me after I followed up with the Oncology RN that surgery is not an option due to the size and position of so many tumors.... It didn't register with my brother that this is not a good thing, which he thinks it is. Yeah! No Surgery! Up until now, surgery has always been the destination after the chemo was completed. Well.... chemo is done now....

I've done way too much research on his particular cancer, I know that a cure requires surgery. I agree with the Oncologist that there is certainly nothing to be gained by an EXTENSIVE surgery, with a year recovery, if it can't remove ALL the tumors. Is there anything to be gained by telling him?

The team has decided on a "watch and wait" mode, allowing Kurt to get on with his life for as much time as he has left.

On the positive: It gives my parents a chance to exhale and Kurt a chance to live with hope... But is it unethical? It is certainly a kinder, gentler approach. My brother has never researched his cancer, which shocked me at first, but he likes to lives in a state of his own reality... Is it horrible of me to keep this secret and the "reality" of the prognosis to myself?

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When my dad was dying in the hospital, my mom went out and spend $1,000 on a hospital bed (this was 32 years ago) when she couldn't afford it. We had to tell her so they'd pick it up and she'd get her $ back. I think somehow when the doctor talked to her, she went into denial or perhaps really didn't understand.

Have you considered talking to the doctor about it? Perhaps as suggested in Marty's article, he does know and prefers to pretend everything's find. It's really hard to know. But whatever the case, as Marty says, this is his death and must be dealt with his way. You may be wondering how your parents will take it if they are not prepared, but keep in mind, they will see the illness progress little by little and they will at some point realize what is happening.

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Thank you for your posts! There is so much wisdom here. My husband, Phil, is considering to delay the next round of chemo which is supposed to start Tuesday. This is a follow-on of 6 weeks Taxol/Carboplatin after just completing 5 weeks of combined radiation and chemotherapy. I can't say that I blame him.

An MRI of his brain scheduled next week to view the positive effect the 6 weeks of whole brain radiation that ended January 31st. He had remaining 3 metastasized brain tumor lesions. This is the first review of his brain since his stage IV lung cancer dx and emergency crainiotomy to remove the large brain tumor 12/27/13. We've been pushing forward at a fast pace and we are all exhausted. The MRI is scheduled next 5/14, results to be reviewed 5/20 with his oncologist. This is scary stuff.

Meanwhile, brother Kurt's PET scan is tomorrow to reveal the extent the tumors have grown/shrunk and level of metatasis. This is the first time we're going to be looking at the result his completed treatment protocol for his Testicular cancer and where we stand in his fight since his dx October 2013. I'm scared for them both.

There are so few options for these guys if the results show growth and active cancer. I don't know how we are going to handle anything negative at this point. Our kids, my parents, Phil, Kurt, our extended family.... I have to stand in faith and hope that we will get through this. It's all I've got.

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Kimberley I am so sorry and all I can say is keep writing here because you need somewhere to vent your feelings when you are trying to be supportive in dreadful conditions. We will listen. Jan

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Dear Kimberlyn,

Yes, it is scary stuff you are dealing with and I can only imagine how frightened you, your husband, your brother and other family members are. I am so sorry you are all having to deal with this fear and illness. Please know we are are here to support you and yes, your faith, so important at a time like this. We are here to listen and support, Mary

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Kimberlyn5,

My XH went through throat cancer and survived, even though the prognosis had not been good as they hadn't caught it early. I remember thinking he had cancer even back when we were married. He did come through it and talked to me about it. He said there were times he very nearly quit treatment, it was so hard to go through, but he had a strong will to live and toughed it out. They think they got it all and he beat it, although he is concerned that it could return or reemerge somewhere else at some point. Right now, he has resumed a normal life and working.

Feeling scared, worried, etc. is a normal response. Positive affirmations can be important, believing, having faith, and I hope you feel our support here as you go through this. My prayers are with your brother and all of your family.

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Hello everyone. I've been keeping a journal through the experience as a cancer caregiver for my brother Kurt (stage IV testicular cancer; dx 10/5/13) and husband Philip (stage IV metastasized lung cancer, dx 12/27/13).
This is something I wrote that captures my experience as we get ready for our local Relay For Life tomorrow:

Exposed

The waves crash upon the shore heralding a storm. The sky greys and the wind throws sand, biting your skin. It is a frightening place; knowing what comes. That the worst is not yet here.

The wind whips your hair about your face. The fierce power of the elements overtake your senses, roaring of crashing waves and with sudden desperation, you realize your small insignificance on the face of the desolate beach.

Where there is nowhere to hide.

Nowhere to seek shelter.

And the storm comes.

The rain heralds arrival. Hard and heavy, it rips at your clothes, seeps into your soul, chilling your bones. You have no choice but to become one with the storm, unable to flee, unable to hide, you embrace its power.

Reason washes over you and forces acceptance that there is nothing to do but wait.

Wait as the storm of emotion linger, rolls and rages.

Somewhere in your small insignificance, there exists a knowing. Every storm cannot last. There will be an end to this assault…Because we know the rain never lasts forever...

Slowly, slowly, the changing landscape, brings new questions. Will I exist after its passing. Will anything be the same? As with the ocean shore, we too will be changed. We are all at the mercy of life’s storms.

As we survey the shoreline, a lifetime of debris has been piled high at the cliffs edge; leaving the surface - New. Softened. Cleansed. Clear. Sun rays break through the clouds, sparkling wet sand, revealing depth the pools of living water, unveiling the beauty and strength within our nature.

And you feel, for the first in a long time, the Son smiling down at your face. God’s loving caress on your cheek. And you know the storm has passed and in it’s wake, there is Hope.

Blessings,

~Kim

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Dear Kim,

I wish we had a magic answer to your question in your opening thread: How long can you stay strong? We don't have answers. We stay strong for as long as it takes. I went back and read your posts since I had not been following this thread and I find that you are a remarkable, strong woman. Not only are you caring for both your brother, Kurt, and your husband, Philip, but you are also reaching out for help.

Your reflections above are awe inspiring. Our lives are truly filled with ebb and flows. We will have many storms and some calm. I think it is our faith that we have that will pull us through for as long as it takes.

Thank you for that beautiful reflection.

We are here for one another. We get our strength from those who hold out a hand and say: "You do not have to do this alone." Our strength comes from knowing that we are not going to have to do this alone. I am glad you are here.

You and your family will be in my prayers.

Anne

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Dear Kim

Your writing is soulful and beautiful, full of thoughts and questions and feelings everyone here knows in some form. The journey is indeed one of change and you are called upon to do so very much right now. I hold you and your husband and brother in my heart.

Peace and yes...hope

Mary

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Very beautifully expressed. How long can you stay strong? As long as you need to.

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