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Thread: Where to Begin ?

  1. #1
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    Where to Begin ?

    Greetings,
    I am the spouse of a cancer patient.
    My Husband was diagnosed in December 2017, confirmed by CAT scan a week later with Stage 4 Renal cell cancer that has metastasized to his liver and lungs. Surgery to remove the mass on his kidney was not recommended.

    He has had more issues with breathing than anything else. Rt lung drained twice and a sealant put in to hopefully prevent more fluid build up. That has worked pretty good... but in the summer heat and humidity he has had a terrible time breathing, and has gone back to using the O2 almost all the time.
    He is scheduled for another CAT scan Wednesday of this week to see how/if things have progressed or perhaps reduced a bit.

    He is on Cabometyx 60mg a day... and some of the side effects have not been pleasant. One being " Hand and Foot Syndrome " His hands are pretty good, but his feet keep getting sores. Being a Diabetic is not helping with that either.
    Thee oncologist that prescribed the Cabometyx said that it is NOT a cure. What he is hoping is it will slow the progression

    As the spouse, I feel selfish when I get overwhelmed by this situation. My husband has Always been super active, even after retirement. He has a wood working shop, a Huge garden that has kept us in Vegetables for Years ! Seeing him unable to be out Doing things is tearing me apart. I can only imagine how HE feels !!!

    Our visits to the oncologist have been good and reassuring ... but neither of us know the questions to ask. So we come away with More questions occurring to us later.
    He also has adult children that have accompanied us to the appts. While i understand their concern... it does make it hard to ask the Dr. some of the Hard questions. I'm kinda hoping that the next appt after the CAT scan... it will just be the 2 of us. Selfish again , i know.

    One of my personal BIG questions is.. HOW do i prepare for a life that might not have my spouse of 31 years in it ? But i think no one can really answer that, as we each deal with things as best we can.

    Thank You for providing a safe place to vent my concerns.
    Mea

  2. #2
    Administrator Top User lisa1962's Avatar
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    Hello Mea and sorry to have to welcome you here given your husbands diagnosis.

    As far as questions, do you keep a notebook jotting down questions you want to ask the medical team? If not, it may be a good tool to use as things come to mind and may relieve some stress.

    Being a caregiver can be overwelming. Life as you knew it has changed and the uncertainty of the future is scary. Trying to look too far down the road is overwelming but with anyone, especially those dealing with an advanced disease, getting legal and financial matters in order is something that is necessary.

    As far as your husbands diagnosis and support of what questions to ask, the folks within our colon and rectal forum are extremely supportive and have a wealth of information you may find helpful. I can move your thread if you like just let me know.

    You are stonger than you realize and there is nothing wrong in taking some time for yourself.

    Lisa

  3. #3
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    Thank You so much for Your thoughtful reply.
    I believe that i would like the post to stay here i the Coping and Support sub-forum, as i am looking more for emotional support for Me. ( selfish, probably, but I am the one supporting my Husband, and some days i Need a bit of support myself.)

    He had the CAT scan last week. Tomorrow we will see the oncologist and learn the results.

  4. #4
    Administrator Top User lisa1962's Avatar
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    Ok, certainly understandable Mea. Feel free to post anytime. Should you have specific questions down the line regarding treatment, then a new thread can be created.

    You are not being selfish. Let us know how the CAT turns out and feel free to ask questions, or even vent here.

    Lisa

  5. #5
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    August 3rd Update.....

    We got the results of the CAT scan... Some good news... there has been some decreasing of some of the spots. And the large tumor on his kidner went from 10cm X 10cm to 8 X 8.5cm. Progress .
    We got some not so great news in that he again has fluid build-up around the RT lung. The Oncologist moved heaven and earth and got him in later that week to have the fluid tapped and drained. They removed 2liters of fluid last Friday ( 7-27)
    We had a follow-up with his Oncologist yesterday (8-2) and while pleased with the results, she ordered an X-ray. ( mainly due to him having breathing issues)
    The X-ray showed fluid And that there was an air pocket that had gotten larger in the week since the Thorosentisis (sp ?) ( i can Say the word... just cannot spell it )
    She requested that we go to the ER ASAP. and we did. He was admitted last night and they are trying to plan the next step... which may mean a small drain tube being put in... so he could be drained at home as needed.
    The Oncologist is also changing the medicine. Stopping the Cabometyx pill and starting a generic Opdivo infusion. ( when he gets out of the hospital.
    We shall see how all this works out.

    My concern is his Quality of Life. He has been very active man ... until this year. Always busy doing and , in my mind, Over doing ... but he has been happy Doing things.
    This year he just could not Do the things for the Family Reunion... but the adult children stepped up and set things up and completely took things down and stored away. What a great help that was ! His garden was Much smaller than previous years and he just has Not been able to keep up with the weeds... and That has frustrated him no end. I really want to question the Drs about Q of L ! I do not think they can imagine how active he has been.

    Once again, i am grateful to be able to talk about this in a safe setting. Thank You.

  6. #6
    Super Moderator Top User Baz10's Avatar
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    Mea,
    Yes this is a safe environment to vent as one way or another we have all been either the patient and many the caregiver.

    The main question has to be
    How does your husband view his quality of life, probably in a negative aspect I’d suggest.

    The caregiver I suggest is trapped between natural love and emotions in wanting the best, yet, unable to actively participate in the treatment process and restricted to providing whatever support they can give.

    A dilemma I suggest.

    From a personal perspective and possibly a greater understanding of what it is like to go from extremely physically active to struggling to do the sports and things I always loved doing and yet I still have the drive to at least attempt to fulfil my aspirations.

    Not entirely easy I assure you having to come to terms with what it is as opposed to what we would wish.

    I don’t hold myself as a example, just a person with determination and fortitude to do what I can when I can.

    When the cards are stacked against what I wish to do and I guess that goes for many I take refuge in the support my dear lady and the family give.

    I dare to suggest it is harder on the care giver and supporter than the patient.

    This is the critical aspect, by being “there” caring, supporting, cajoling and at times bullying if it is needed you are providing a shining example.
    Leading by example however difficult it gets.

    From fear, frustration, anger, despair comes a inner strength that is intangible.


    Keep on going as at least there is encouraging news and every step forward is a battle for your husband and yourself, yet no battle was won by the warriors without the support of the hidden army of supporters.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  7. #7
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    Thank You Barry for Your response.

    My husband has been an extremely active person all his life. Not in the sense of weight-lifting, or running.... but in Always Doing something. His hands and mind are almost Never idle. He has a wood-working shop, a sawmill where he turned the trees he cut into lumber for many of the buildings and sheds we have here. He has a huge garden where he grew almost All the vegetables that we would eat thru-out the year. He was happiest when there was some piece of equipment that did not work quite right (or at all) he would figure out How to either Fix the problem... or work around it. It has been so difficult to see him not able to do things because of the shortness of breath ! Hopefully tomorrow the procedure will help with That !!!

    It occurred to me today, that when I , or others of the family, talk about His * Quality of Life * .... we are hoping that some-how he will be just as he was Before this cancer affected him. With that realization... it also hit me that he will Not be the same. That this IS the new Normal and * WE * the family will need to learn to deal with it. It is hard, difficult, and i want to scream in rage at the stupid disease !

    I'm hoping so very hard that this drainage tube will give him at least Some relief for his breathing.... and... that he will allow some time for healing before attempting to DO all the things he used to do... and ending up frustrated and disappointed that he cannot Right away.
    I guess time will tell.

  8. #8
    Super Moderator Top User Baz10's Avatar
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    Mea,
    Fully understand the total frustration.
    For me and again I do not hold myself up as a example, other than
    being able to do possibly the smallest thing becomes a gratifying achievement.

    After surgeries I mentally set myself goals and as Nick managed to acheive these goals way ahead of what the docs anticipated.
    Call it bloody minded, stubborn, determined or just stupid we achieved what we wished and love to do.

    The key motivators are the determination to do what we like or love, irrespective how large or small that goal may be.
    Acheiving it as.I say however small gives a mental and physical boost.

    Difficult times I agree for you all, but learning the new Norm can be instrumental in kick starting other gratifying possibilities.

    The old saying
    We cannot change history but we may be able to influence the future.
    Barry
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Motto
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  9. #9
    Newbie New User
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    5
    Yesteray was a Very long day !
    We were at the hospital early , in case they were going to do the procedure in the AM. We were told several different times for the procedure... and it kept getting later and later. He was struggling more and more with trying to breathe as the day went on. We finally adamantly requested Respiratory to see him... and the Therapist was able to give him a bit of relief.
    The tube insertion was finally done at almost 6PM.... and the change in his breathing was like night and day ! They took 2 liters off him, and figure the next few days will remove that much again... At least with the tube in place he will not Need to wait until he is gasping to have fluids removed.
    Once he gets back home, then we will get back to oncology and find out when they will start the Opdive...generic version.
    We had discussed a Port being put in... as the ER drs had a heck of a time trying to get IVs in... his poor veins have had so many pokes and prods lately.. that they do Not want to co-operate any more ! A port might make that less uncomfortable for him.

    One day at a time !

 

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