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Thread: Concerned about caregiver

  1. #1
    Experienced User
    Join Date
    Jul 2017
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    Concerned about caregiver

    I was diagnosed with Stage 1a mucinous adenocarcinoma of the ovary earlier this year. This was after removal of a cyst that we were watching for a few years.

    I have a very supportive and loving husband but I am concerned about how he is coping with the news. Where I have tried to talk to him about his concerns/anxiety, he has not been forthcoming. I see him going through physical symptoms (migraines, fatigue and diaherra) every time I have a procedure. Where I would like to say we are 'over the hump', I shudder to think of how he will be should I need to consider adjuvant therapy.

    Perhaps I have not given him sufficient opportunity to get used to the diagnosis (found in May)? Any advice would be appreciated. Thanks

  2. #2
    Dear Ingrid: While it sounds like you have adjusted to the situation, it sounds pretty clear to me that your husband has not adjusted (either consciously, subconsciously, or both...) to this situation, based on some pretty significant physical symptoms. Googling your symptoms confirmed my assumption that stage 1a is as early stage as you can get, so I think something is definitely wrong with your husband here. As far as what to do about this, I am frankly at a loss what the appropriate approach should be, so I'm going to leave it for someone else who might have experience with this particular issue. My best wishes for a successful outcome, both in the short and long term.

    Sincerely, DMW
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Onc estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective
    12/4/17 Diagnosis: Uncontrolled refractory AML

  3. #3
    Experienced User
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    Thanks DWM.

    Perhaps if I provide further context it will assist to explain. My husband's mother passed away from lung cancer four years ago. Last fall his best friend was diagnosed with Stage 4 colon cancer. His eldest brother was diagnosed with early stage prostate cancer early in 2017. It seems to be everywhere and consuming him. Do you think talking to our GP would help?

  4. #4
    Moderator Top User jorola's Avatar
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    That might help Ingrid. Maybe a buddy of his could talk to him? His brother?
    As a caregiver, yes we stress, mostly on not knowing how to help the patient the best way, the pain of seeing them in pain and the worst - the thought of losing them. However, sometimes when you try to force the conversation it just won't work or will backfire. let it happen naturally if it happens with you. Otherwise he is likely finding it hard to discuss it with you because he does not want to worry you and (placing my neck/head on the chopping block here)...um he's a guy. Some (not all) just don't like to verbalize feelings - end of story and just need to deal with things in their own time and own way. If he is one of those guys, trust in him, in your love for each other, like you have during other hard times, and you will still be there together at the finish line.
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same
    Aug 2017 - and ditto
    Aug 2018 - 4 yrs NED - no evidence of disease
    Aug 2019 - 5 yrs NED and discharged from cancer clinic!!!!!

  5. #5
    Quote Originally Posted by Ingrid_CanOn View Post
    Thanks DWM.

    Perhaps if I provide further context it will assist to explain. My husband's mother passed away from lung cancer four years ago. Last fall his best friend was diagnosed with Stage 4 colon cancer. His eldest brother was diagnosed with early stage prostate cancer early in 2017. It seems to be everywhere and consuming him. Do you think talking to our GP would help?
    Aha! That makes some sense. The year that I was diagnosed was a full year of unrelieved misery, disappointment, a death in the family, and then with my diagnosis and near death experience, that shook me up pretty good. After being handed an inescapable refractory leukemia diagnosis, I accepted that I was a Dead Man Walking, and just snapped out of it. Your husband, on the other hand, has had three family members diagnosed with fatal or very serious cancers, and now you make #4. This probably looks like the end of his world, and he's probably thinks that 1a diagnosis you have is just a cruel twist of fate to get his hopes back up. I think he needs to see his GP to get the necessary medications to get his body working properly again, and that could include anxiety, blood pressure, and possible depression. In addition, he should get some counseling for his accumulated fear of cancer from a professional with a cancer grief counseling background. Regardless of my condition, I wouldn't want to trade positions with your husband under the current circumstances. The good news is that neither of you are likely to need miracles to get through this, so you two just need to get to get moving towards the sunlight. Go this way----->>>>> https://www.cancerforums.net/threads...ad-Man-Walking
    Last edited by Dead Man Walking; 08-25-2017 at 04:40 AM.
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Onc estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective
    12/4/17 Diagnosis: Uncontrolled refractory AML

  6. #6
    Experienced User
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    Jul 2017
    Posts
    60
    Thanks for your support. This is what I was looking for. Jodie you are right about the 'man card' (no disrespect dudes). My husband is tough on outside by soft inside. I believe he is trying the play the 'rock' (as always), but he is having a harder time. When his Mom passed, although he was the youngest of 5, he had to make all the arrangements as the rest were basket cases. A lot of responsibility on his shoulders.

    DWM. I won't put any pressure on him. I have an ONC appointment on September 22 for results of last surgery and an appointment with our GP on September 25. Perhaps the final diagnosis and next steps will help to alleviate some of his concerns? We are lucky enough to share the same GP so he understands the health issues of our family. I agree that some meds may help to alleviate his 'symptoms'.

    In all fairness to my hubby this started out as a pesky little (soon to be very big) cyst, so this news was surprising for us all. Your beautiful sunset photos were devoured by my husband as he is an avid photographer and I could see the stress/anxiety leave his body...even if it was only for a little while.

  7. #7
    Hoo-rah!! I wasn't expecting a response that good! Well, I have a surprise for your husband. There are a total of seven sunset threads in The Lounge, so he's probably got about another 120 panoramas to look through. FWIW, all of my pictures are HDR composites of three original pictures shot at -1, 0, and +1 Exposure Values.

    Best regards,

    DMW
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Onc estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective
    12/4/17 Diagnosis: Uncontrolled refractory AML

  8. #8
    Experienced User
    Join Date
    Jul 2017
    Posts
    60
    Thanks DWM, I'll be sure to have him look at all of them then. I will pass on the photo details (not my forte) as well. He has been talking about getting a drone for a while now and yesterday I told him to go for it. Do you use a drone for any of your photos?

  9. #9
    While the idea is intriguing, I have never seriously considered taking a shot at it. Thinking about it for a minute, I'm not so sure that it would work with HDR techniques because you need three shots of the exact same location and angle to be able to merge the shots. I'm also not sure a camera like a GoPro is capable of doing 3 shots at different EV values. In Southern Louisiana it's either housing, swamps, or forests, so it's hard to find a good place to shoot pictures. Maybe I should do some research........
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Onc estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective
    12/4/17 Diagnosis: Uncontrolled refractory AML

  10. #10
    I am caregiver to my husband who has relapsed Lymphoma. Like your husband, I have had problems dealing with this, mainly tough anxiety. My GP put me on antianxiety meds and an antidepressant. I did very well until he relapsed and developed complications. It's like a rollercoaster ride. I resisted counseling because I have a distrust of counselors because of previous problems with them. At this point, however, my husband suggested we try the counselor at Baptist/MD Anderson and I have agreed. I think I have caregiver burn out because I was caregiver to our son also. This was due to 6 brain surgeries.
    My husband will be going with me.
    He also had the "man thing" about counseling many years ago when he lost his job of 25 years due to the recession. I thought I would lose my mind with him because he simply closed down. I found a male counselor he really related to and now he's very glad he went. That's why I was surprised he kept encouraging me to go.
    The emotional and physical aspects of caregiving are daunting. I look at going to this counselor as hopefully filling my emotional gas tank up. I had no help, friends and family ran for the hills..it was me, my husband, our son when he could help and God.
    Getting help is a very personal thing. Perhaps your husband might be willing to go if. You can go with him. God bless....
    His fight is over. How brave he was. 47 years of love.

 

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