New here too. How does one deal with everything?

junklady
junklady Member Posts: 88 Member
edited March 2014 in Caregivers #1
First time posting. I feel so helpless. My man (we are not married) of 11 years is dying. He has cancer of the vocal chords and has chosen not to have any further treatment. Radiation is out of the question because he had it 3 years ago. The doc wanted to do Laryngectomy and he said no.He would rather go on living the way he does, quality of life for him is better. I don't know what to expect and when. I cry all the time. Have to go outside. I've been keeping a daily journal, it helps me vent. I retired in June after 34 years of teaching high school Art. Little did I know what God's plan was for me. To be a caregiver and be put through another test in life. His children are coming this week to visit. He is not looking forward too this. In 11 years, they have been here once to see him. It makes me angry that they didn't come while he was healthy. This visit is not going to be pretty. We have been getting all his affairs in order the past 2 weeks, talk about an emotional roller coaster. I keep telling myself I need to stay strong, but i still cry. I just needed to share this with someone going through a similar situation. I could go on and on. Thanks for letting me vent.

Comments

  • SonSon
    SonSon Member Posts: 174
    #2
    It is ok to vent.
    Junklady... it is alright to vent. Sometimes the emotional pressure is just too much.

    Sounds like you are doing quite a bit all on your own. If there is any way for you to recruit some help - even for a little cleaning, meals, or hanging out with your man for an hour or so while you run much needed errands - that would be good. Look to your religious or social community and just ask. Even if they just came and sat with you it would help, I am sure.

    Keep coming back here with your venting and your questions - it will help.

    Fatima
  • Beckymarie
    Beckymarie Member Posts: 357
    #3
    Yes, I do know what you are
    Yes, I do know what you are going through. My husband was diagnosed in March 2009 with a Lv. IV GaBM. It is inoperable and very much like the one Ted Kennedy had. We went through the course of radiatin and chemo and first MRI looked hopeful. Unfortunately, the 2nd one did not and we are now considering a new course of plan. There are some days I feel like I cannot do this any more....working, MD appts., Yard work, housework, etc. but what choice do we have? I love my husband of 31 yrs.and will take him to the end of this journey. We had just made our last tuition payment for our youngest in January and had such plans. There are no guarantees in life. Hang in there, you can make it through this. You are in my thoughts and prayers.
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #4
    Hmmm
    ArtLady, welcome to this crummy club (due to membership requirements, I mean; the members themselves, as you have already begun to gather, I'm sure, are outstanding people, kind, thoughtful, generous and often heroic, whether survivor or caregiver).

    With respect to your man and his decision, he is apt to be bombarded with dissenting opinions from the kids about to arrive at your doorstep, as you seem to suspect and expect.

    Personally, I would take their side on this one, as I had a friend in the realty business who lived into his 80s ... and this back in the 1980s ... following removal of his voice box when he was still in his early 60s. He was a happy, energetic, go-getter type who did not let his new 'voice' affect his ability to enjoy life and even continue in a most vocal of careers, the selling and buying of commercial and investment properties. He was, in fact, much admired in the community of real estate folks and, I'm rather sure, far beyond.

    And, personally, I have survived a 15 hour surgery to replace half of my tongue, along with a radical neck dissection, four days of induced coma, chemotherapy, seven weeks of radiation therapy inside of a mask bolted down to a table, followed LATER by a lobectomy, MSSA (a staph infection that kept me in the hospital for nearly an entire month and included another surgery to my lung) and MORE chemotherapy...and am now NED (No Evidence of Disease), looking forward to celebrating my wife's 50th birthday this weekend along with our 31st anniversary.

    I would do it all again (well, except maybe for the 31 years... JUST JOKING :)), even knowing the trials and tribulations that were a part of the deal.

    But, off of my soapbox...you will hear enough of that from the kiddies when they come :), and, as others have mentioned, in the final analysis it is indeed a most personal decision.

    With respect to YOUR issues, ArtLady, please know that as a survivor it is my consideration that my wife, my primary caregiver, had a MUCH harder job than I did. I have great respect for the job you are doing and in particular for the job that lies ahead of you. Given the choice between battling the disease and being a caregiver for a loved one, give it to me every time. Honest.

    I agree with the others that this is a good place to vent. You might also have a look at the chatroom on this site, which is a good 'immediate' sort of place to express your emotions and concerns and even, who'd a thunk it, to talk about something OTHER THAN CANCER occasionally, which can do a world of good.

    As well, if you are of the church-going persuasion, you should consider talking to a pastor/priest/minister/shaman, whatever the case may be, on a regular basis. If you are not of that persuasion, I would suggest hooking up with a therapist. At the very least, ask your doctor about some anxiety-reducing meds.

    If those are also anathema to you, you might want to call some of the following, where you can get some phone time with folks practiced in such matters:

    http://www.cancer.gov/cancertopics/factsheet/Support/financial-resources

    This site is put up by the National Institute of Health or some such, and is government-supported. T

    Cancer Care, a non-profit org., offers free support and counseling for cancer patients by oncology social workers. They have face-to-face counseling and counceling on the phone. Support groups on the phone are available too and are moderated by an oncology social worker. Call 800-813-HOPE. They can also give you info about financial resources. Check their website: www.cancercare.org

    Gilda's Club - www.gildasclub.org - they offer free social and emotional support. Not sure if they may have financial information but check it out just in case.

    Live Strong - www.livestrong.org - offers one-on-one support.

    American Cancer Society (here) can also give you financial, support, etc. information available in different cities.

    Finally, ArtLady, the long road is just opening up in front of you and your loved one, it sounds like. If he doesn't change his mind about treatment, the conclusion is more or less a foregone one, barring miracles which I really don't believe in myself. The road, I mean to say, is going to get bumpier.

    Please try to cut the kids some slack. I obviously don't know the family dynamic, but perhaps there are valid reasons for their not showing up before now. In any event, at this critical time, they want to be there. Remember, erudite woman that you are, that we express our grief differently and especially now they are probably going to be adamant, at least one of them, in urging their dad to change courses.

    Most people mean well, ArtLady, and I would assume that your man's kids do.

    I wish him, you, and the family the very best in these trying times.

    Take care,

    Joe
  • donnare
    donnare Member Posts: 266
    #5
    So sorry
    Hi,

    I am so sorry for all you are going through. It is very difficult to watch someone you love go through this. My husband was dx in May with ccr with many mets to liver. All I could do at first was cry and be scared. My doc suggested an antidepressant and it has really helped me cope.

    Vent away - it helps to talk to people going through similar challenges. Being a caregiver is tough.

    I will keep you and your husband in my prayers and wish you peace in your heart.

    Donna
  • esined
    esined Member Posts: 22
    #6
    Similar situation
    My husband and I have been married 17 years. April 6th he was diagnosed with metastic colon cancer in his left lung and in 4 lymph nodes around his treacia. He is doing chemo and was told that it would only extend his life, not cure. When he told his parents, kids and family they all started visiting. His mother, now 74, had visited once in the past 10 years and she managed recently. We have always traveled to the kids, parents, etc. When his father was going to attempt a visit (had not seen him in 11 years) he ended up in the hospital so I drove my husband to see him.
    The hardest part has been watching each of them show up with disbelief and expectations they can do something to change what is happening only to leave knowing that their son, father, cousin.... is dying.
    My husband's son is coming in two weeks and is planning a two week visit. He lost it on the phone when he was told and I know he will be a basket case after he sees his father. The changes have been dramatic in my husband's appearance. What can make this even harder is his younger sister will see his reaction, like she did the others, and I will have to work to help her though that.
    The way you worded it, it sounds as if you are also a step parent like me. That in itself can be a tough position to be in. Having to "love" his kids when they may not even like you or blame you. Hopefully that is not a part of this path you are on now.
    The kids may have thought that their father would always be there, so there has not been the need to get to see him. Urgency does seem to change how people feel and react. My revolving door of visitors has proved that.
    You do sound like a strong person and being able to cry and vent is a way to let some steam out of the pressure value. I am hoping you are able to find some time for yourself and your art.
    You will be in my thoughts and prayers.
    Denise
  • seanslove
    seanslove Member Posts: 70
    #7
    Vent away
    Junklady,

    Vent away hon it's the best thing for you right now. My husband was dx on May 18th of this year with stage four mestatic adencarsinomia with mets to colon,lung,and panc. He passed away last week on Aug.19th. When we first saw his oncologist she told us she could put this in remission and was very positive,however,as time passed,far to much between dx and starting treatment he became worse and worse. He went from 6'3 and 180lbs to 125 when he passed. We were married for 6 1/2 years and together for 7.
    As for family,well,his all showed up as soon as he became ill and everyone kept telling him to fight. All the fighting,I believe shortened his quality of life,as of the middle of June he became unable to do more than go to doc appointments and treatments. I believe had he taken the road he wanted,at least he would have had a quality to the time which was left. I never influnced him either way and always said due as you wish,however,he listened to syblings and lost in the end.
    I know the stress and anixety which you are feeling as personal thoughts will fly when the family shows up and each will tell him what they think is best,however,they are not the ones in this fight,so please just keep telling him to do what he feels is right and either way you will be behind him 100% as this is what I always told Sean.
  • junklady
    junklady Member Posts: 88 Member
    #8
    esined said:

    Similar situation
    My husband and I have been married 17 years. April 6th he was diagnosed with metastic colon cancer in his left lung and in 4 lymph nodes around his treacia. He is doing chemo and was told that it would only extend his life, not cure. When he told his parents, kids and family they all started visiting. His mother, now 74, had visited once in the past 10 years and she managed recently. We have always traveled to the kids, parents, etc. When his father was going to attempt a visit (had not seen him in 11 years) he ended up in the hospital so I drove my husband to see him.
    The hardest part has been watching each of them show up with disbelief and expectations they can do something to change what is happening only to leave knowing that their son, father, cousin.... is dying.
    My husband's son is coming in two weeks and is planning a two week visit. He lost it on the phone when he was told and I know he will be a basket case after he sees his father. The changes have been dramatic in my husband's appearance. What can make this even harder is his younger sister will see his reaction, like she did the others, and I will have to work to help her though that.
    The way you worded it, it sounds as if you are also a step parent like me. That in itself can be a tough position to be in. Having to "love" his kids when they may not even like you or blame you. Hopefully that is not a part of this path you are on now.
    The kids may have thought that their father would always be there, so there has not been the need to get to see him. Urgency does seem to change how people feel and react. My revolving door of visitors has proved that.
    You do sound like a strong person and being able to cry and vent is a way to let some steam out of the pressure value. I am hoping you are able to find some time for yourself and your art.
    You will be in my thoughts and prayers.
    Denise

    Thanks for all the replies
    Thanks, It's been very helpful and comforting to hear how all of you view life and deal with cancer. Reading your stories have brought tears to my eyes, and knowing that we are not alone in this emotional battle has made me view life differently. Being able to communicate here makes me feel better. His kids have arrived after a long day. We live in a small mountain town in West Central Idaho, 150 mile roundtrip to the airport. I hope the visit will be a good one and they can enjoy the days together. Check on our cattle and feed the pigs, go to the lake. I, on the other hand will be working at my weekend business at the local flea market (The Doghouse), serving breakfast and lunch all day. 7am-5pm. Being busy for me helps keep my mind away from sad thoughts and tears. You are all in my thoughts and prayers, and thanks.
  • MOE58
    MOE58 Member Posts: 589 Member
    #9
    seanslove said:

    Vent away
    Junklady,

    Vent away hon it's the best thing for you right now. My husband was dx on May 18th of this year with stage four mestatic adencarsinomia with mets to colon,lung,and panc. He passed away last week on Aug.19th. When we first saw his oncologist she told us she could put this in remission and was very positive,however,as time passed,far to much between dx and starting treatment he became worse and worse. He went from 6'3 and 180lbs to 125 when he passed. We were married for 6 1/2 years and together for 7.
    As for family,well,his all showed up as soon as he became ill and everyone kept telling him to fight. All the fighting,I believe shortened his quality of life,as of the middle of June he became unable to do more than go to doc appointments and treatments. I believe had he taken the road he wanted,at least he would have had a quality to the time which was left. I never influnced him either way and always said due as you wish,however,he listened to syblings and lost in the end.
    I know the stress and anixety which you are feeling as personal thoughts will fly when the family shows up and each will tell him what they think is best,however,they are not the ones in this fight,so please just keep telling him to do what he feels is right and either way you will be behind him 100% as this is what I always told Sean.

    I am so sorry
    Seanslove,
    I am so sorry to hear he passed away, i have been reading some of your post, you have/was married as long as i have been with mine, we were married 3 on the 21st and together 6, I have been very fortunate, mine was diagnosed with esophogeal on aprils fools day and I was waiting for someone to shout aprils fool to us, he is a 45 year old man with stage 2 ec cancer, we had 3 rounds of hard chemo, and surgery on the 23rd of july, he was in icu for 12 days and hospital for a week. He has had a very tough time, and wwas actually knocking on heavens door, his kids by a previous marriage at one time i was really a **** to them, but after they saw what i did for their dad by wiping his butt, and making sure he was clean and there 24 hours a day i am not so bad, its terrible something like this has to happen to appreciate someone like me. My kids treat him with respect and always has because their dad was a deadbeat and only a sperm donar in our eyes. I know you have a tough road ahead and hope he had his affairs in order and you didn't get left without nothing. He will never be able to be replaced in your heart, but you have to know that you wouldn't want him to suffer like he was. I will always keep you in my prayers, if you want to go to the discussion board under Esophogeal Cancer you will see some of my posts and our last one stats "CANCER FREE" .

    If there is anything i can do to help please let me know.

    take care
    Lori aka moe
  • pattynonews
    pattynonews Member Posts: 176
    #10
    why do people act like that
    You need to take time for yourself too or you will go totally crazy, We are inlimbo with Jack's cancer he was dx a year ago, and he keeps getting sick with infection, getting a trachea , 2 blood transfusion all of this in a month and half so we have not been able to start any treatment we don't even know if any treatment is going to help him he has and different chemo's and max out on his radiation, now we are just waiting for him to get healthy for a trial study, I am his 24/7 caretaker, and he is getting very moody sometimes that I just have to walk away and let him get it out of his system, And once a week I just get out of the house all by myself and go shopping, go to his sister house anything, just to escape for an hour, It's so hard not to know if there is treatment or not, I am so afraid of the future without Jack, And there is something else on my mind, Jack is not even gone and people are claiming stuff what is with that, I don;t understand, Jack is a drummer, and wanted me to keep his drums but the family is fighting, and like yesterday, I was putting my stuff in storage and Jack gave me this really nice picture of him playing the drums and his sister just took it and put it in her car, and when we said something, ( even Jack said something,she said tuff its mine, what is wrong with people, Im at the point I have video of Jack and I have to hide them and what ever is in storage will stay ,It just upset me , Ok we are not married but I have been here every day every monute of cancer, there were times they would not have nothing to do with us, but now they want to claim things, So I just step back and say whatever, just because I don't want to upset Jack, I just want peace and jack to have peace is that too much to ask for

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