New to all of this...

cmd1980
cmd1980 Member Posts: 2
edited March 2014 in Caregivers #1
My fiance was diagnosed with testicular cancer 18 months ago and after having surgery was deemed "cancer free". He continued with his regulary scheduled follow up appointments and we recently found out he had a recurrence. He has stage 3 testicular cancer and is now beginning his chemo treatment. He goes for 5 days, for about 7 hours and then he is off 2 weeks, and then the cycle begins all over again. My question is how do you all do it?? We have a 10 year old little girl, so I'm having a hard time balancing between both our daughter and my fiance. I feel enoromous guilt and even though he has only gone through 1 complete cycle (he has 4 more to go), I'm already exhausted and I'm not the one going through the chemo! I feel bad even complaining and when I do feel at my wits end, none of my friends or family seem to listen. They tell me how strong and tough I am for helping my fiance through this, but that's not what I want to hear, does that make sense?

Comments

  • HeartofSoul
    HeartofSoul Member Posts: 729 Member
    #2
    sorry to hear CMD about
    sorry to hear CMD about spouse. i had stage 3 non seminoma tesicular embryonal in 2008 and had 3 rds of BEP (bleomycine, cisplatin and etoposide) (chemo) 5 days a week then 2 wks off. sometimes they give 4 rds of EP (etoposide and cisplatin). im in remision since dec 31 2008. Stage 3 means there are tumors beyond lymphatic system (nodes) and in lungs usually nodules which are often small. The treatment is one of the most effective even in stage 3 and has been used for 35 + years.

    His survival chances beyond 5 yrs over 75% and once in remision, often remains there once chemo is adminstered and completed in the called for 3 or 4 rounds. The key here is remission is much harder to achieve if only surgery was done.

    You mentioned he had 1 rd and gets 4 more but it should be 3 or 4 rds max. You also mentioned he was dx 18 mo ago and had surgery but no treatments following. When i hear a surgeon say he got all of it and your cancer free i know what he means he got only what he could see and should be careful in saying cancer free. Do you know what type of testiclar cancer he had at dx? Non seminoma and mixed testicular cancer is a very aggressive type and can spread quickly from inguinal nodes to lungs and then to liver.

    Just above either side of the genitals and lying in lower reaches of abdomen, inguinal lymph nodes can be quite vulnerable to being enlarged, swollen and even malignant. Such lymph malignancy in the area may result in cancer.

    My surgeon sent me to a med oncologist right after surgery in apr 2008 and he wanted to give me chemo (4 rds of EP) becuase even though i had no evidence of disease/cancer on pet and cat scans and tumor markers were normal, the pathology report indicated a liklihood of recurrence. due to my unusual circumstances at the time, we followed closely via scans every 2 months and blood work every month until August 2008, and then the cat scan found
    tumors in numerous nodes, lungs and almost in liver.

    I ended up getting 3 rds of chemo (BEP) after he did catscan, petscan, pulmonary test and MRI of brain.

    I understand everyone says your strong and tough you are and youll handle it. What you need to hear is its okay, to vent, cry, get frustrated, drained, and stressed. The members here in CSN will support you no matter what happens or how you feel. All of us are either cancer survivors and/or caretakers like you and your spouse.

    If there is anything I can do for your spouse and your family, dont hesitate. you can use discussion boards here or my email in CSN. Just search members and use my member name of "Heartofsoul"

    Heart of Soul Steve

    below are top points to follow during treatment
    1. Get blood work multiple times a week for WBC, platelets and red blood cell values

    2. Get emends for nausea

    3. Avoid difficult to digest foods like red meat, fiber, and heavy or spicy foods

    4. Any fevers of 100, call DR

    5. Avoid missing any treatments as its important to follow

    6. The oncologsy nurses are valuable for symptoms and answering many of your questions

    7. Expect unpredictable bowel movements, and gradually increased fatigue as symptoms are more intense as he goes thru rds 2, 3 and 4. blood transfusions are not uncommon

    8. There will be times he will want to be alone, allow it

    9. Take time for yourself such as walking, reading and being with others

    10. your not alone, were here for you
  • TBOB
    TBOB Member Posts: 19
    #3
    ONE DAY AT A TIME !
    THAT IS HOW YOU GET THROUGH THIS NIGHTMARE. SOMETIMES IT IS ONE HOUR AT A TIME BUT YOU WILL GET THROUGH. I HAVE A TEN YEAR OLD AS WELL AND I FEEL SHE IS THE ONE THAT IS REALLY GETTING CHEATED. ALL OF THE SUDDEN SHE IS NO LONGER THE CENTER OF OUR WORLD AND BY THE TIME I FINISH DOING WHAT I'M SUPPOSSED TO BE DOING SHE IS EITHER ASLEEP OR I'M SO EXHAUSTED I GO TO BED SO I CAN START AGAIN THE NEXT DAY. I PLAN ON KEEPING HER INFORMED, ACCEPTING THE HELP FROM FAMILY AND FRIENDS, ASKING FOR HELP FROM FAMILY AND FRIENDS, RELIZE THIS IS A CHALLENGING TIME FOR EVERYONE. YOUR DAUGHTER IS WATCHING HOW YOU ARE HANDLING THIS SITUATION, IT'S A HELL OF A WAY TO LEARN ABOUT LIFE BUT SET A GOOD BUT REALISTIC EXAMPLE. LET HER KNOW LIFE IS CHALLENGING AND THAT ALL EMOTIONS ARE ACCEPTABLE WHEN APPROPRIATELY DISPLAYED. SHE KNOWS YOU LOVE HER AND WHEN SHE GETS OLDER SHE WILL ADMIRE YOU AND BE PROUD OF WHAT YOUV'E BEEN THROUGH. TAKE CARE OF YOURSELF.
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #4
    Strong
    You are strong, but that doesn't mean that you aren't human, that you don't need help, or that you don't get just plain worn out at times. Sometimes when people describe us as strong they some how think we are super human, but we are not. Of course you are tired. Of course you are frustrated. I am also guessing that you are a bit scared. Recurrences tend to remind us that even when our loved one is considered cancer free, cancer can still be lurking, just waiting for a chance to attack again. Let your daughter help, too. She is old enough to understand and have a need to know that she is an important part of the family. Don't treat her like an adult, but explain within her ability to understand. Then ask for her help. Maybe it is just sitting with your fiancé for a few minutes or bringing him a glass of water. Then whenever possible set aside a few minutes each day when she can be the center of your attention. Take some me time as well. The number one rule and the hardest one to follow is to take care of yourself. When called upon we can usually rise to the occasion and do what we need to do. I can assure you that what you are feeling is normal whatever normal is. Many here understand and share your feelings. Hang in there. Fay
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #5
    Welcome
    Hello CMD and welcome to our caregivers family. I was a caregiver for my dad. He passed in March from esohpageal cancer with mets to the liver. I agree with the others, ask for help. Do not be afraid to do so. I also have a ten year old daughter. She was the rock for all of us when my dad went through his battle and passed away. She told us, Come on, you all know how sick Pop was....he is in a much better place now! Kids are amazing. We never hid anything from her either. You also have to keep a positive mind set, have a strong faith. Come here often, this will serve as wonderful therapy for you. We have all "been there" and "done that". Keep in touch.
    Tina in Va

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