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Thread: Just diagnosed and an emotional mess

  1. #21
    Administrator Top User lisa1962's Avatar
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    Sandy,

    I am saddened to hear your most recent news but like your doctor has indicated, 75% is excellent survival rate and sounds like you have a caring and supportive medical team.

    While cancer diagnosis is mentally devastating, you are also dealing with some extremely saddened life choices in not being able to carry a baby. I can't imagine how one copes with that knowledge but many do and create a beautiful life regardless. You are strong and try to focus on the here and now.

    I wish I had more words of strength or information related to this specific type of cancer but I am not knowledgeable about it. Everyone here on the forum is a caring and supportive community and we are all virtually along side you as you travel this path.

    Lisa

  2. #22
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    Hi Riosgirl, thanks so much for sharing. I'm really glad things worked out for you and Rio. I hope we'll have a chance at egg freezing too but I'm managing my expectations as usual. I was diagnosed a week ago- things are moving really fast. My doctor knows how important it was for me to have a child but I don't think he will give me a month. There is a gynocologist on his staff and maybe she will be more helpful with this. Who did you tell and not tell about his cancer? What did you mean when you said it became easier to be around people who knew? I'm reluctant to share this news with people and become known as the girl with cancer.

    Gbmsibling, thanks for your kind words. I am taking zoloft for depression and lorazepam for anxiety. How does surgery cause depression? I haven't heard that before. I had tearful moments today but cried less than yesterday. There is a numbness today too, which I suppose is better than sadness. Will I ever feel happy and normal again? It's hard to imagine.

  3. #23
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    Thank you, Lisa. It is comforting to know we are all going through these pains together. I don't know anyone in real life who is battling cancer or supporting a partner or family member with cancer. There seem to be some very caring people here and I'm grateful for everyone's support.
    As you said, losing the ability to have a child is by far the hardest part of this. It's not only a loss for me but knowing my husband will never be a father pains me more than anything. He would have made a great dad and his kids would have been so proud of him. I'm nervous to tell my husband's parents who are anxiously waiting for their first and only grandchildren. What if they think my husband made a mistake marrying me? He says they won't think that I shouldn't focus on anything but getting better but I'm haunted by that thought. Maybe our purpose is to adopt a child. I need a new dream- something to hold on to to keep me going. I'll find my strength eventually, I hope.

  4. #24
    Riosgirl is giving you some wonderful advice.
    This is probably the most difficult time.....getting the diagnosis. I am so sorry, sandy, the news was not what you had hoped to hear. It's very hard to hear that and I know your husband is very upset too. What a wonderful dr. you have! Don't hesitate to call him if you need to, sandy. You could ask him or someone in his office if they can also give you the name of a good counselor that works with families in this.
    75% is not a bad survival rate at all. Contact the American Cancer Society for all the info they have. I believe they have a pen pal program that would be of great help. I went through the American Brain tumor association when we found out about our son's brain tumor. I found a wonderful pen pal who truly understood what it was like and I understood her pain. We are still wonderful friends after 20 years. When she found out about my husband, she continued to be of great support, does not judge me and listened to my tears.
    It helps a lot to talk to someone that has been through it.
    I know right now is so difficult to accept. But once yourheart and mind accept this, it is a bit easier. POGuy has been of so much help to me with my husband's Lymphoma. He also has it and just had a stem cell transplant. He's calmed my nerves so much and is so wise. I know people here will be able to help you in that area too. I will always keep checking to see how you are. My heart goes out to you but you seem to be very mature, making good decisions under difficult situations.
    Maybe God does mean for you to adopt a child. He will reveal plans his plans for you. Our son is our only child and my DIL has decided she doesn't want children. While it hurts, it's their life. I don't love her any less. She's very sweet and kind to us. My son was very hurt but his love for his wife is evident. It's their marriage and we don't interfere. She married David knowing he had some health problems and we admire her so much for that.
    Remember, God is always by your side walking with you.
    Last edited by Marian333; 08-13-2015 at 12:09 AM.
    His fight is over. How brave he was. 47 years of love.

  5. #25
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    Thanks, Marian. You've been with me from the beginning of my journey and you've helped me the way POguy helped you. I really hope the worst part is over. Thanks for suggesting the pen pal program. It sounds really helpful- I'm going to look into it tonight. I do feel blessed to have found a doctor who cares for his patients and is there for them around the clock. I need to keep focusing on the positive things in my life. I'll come back with an update on my treatment plan tomorrow.

  6. #26
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    Hi Sandy, there might be someone on staff at your treatment centre who specializes in reproductive issues, may be worth asking about. At least you will know your options, right? I think Rio's team would have started his chemo later if he told them he wanted to make sure he did the sperm banking first, but he just wanted to get started and not have too much time to think about it all, you know?

    I didn't really tell anyone about Rio's cancer except my parents and sister (and coming on forums). Other than that, in "real life", I left it up to him to decide who would know. It wasn't something he announced on Facebook or anything. He slowly told people on a need-to-know basis (work, his family, some friends etc). We weren't trying to keep it a secret, really, I just didn't want him to become the cancer guy or my cancer boyfriend.

    It got easier to be around people who knew as his treatment went on. He was fatigued and sick pretty constantly, so being around people who knew was easier because they tried to understand and didn't get mad if he showed up to, say, a friend's house to watch some sports thing, and ended up leaving after an hour because he was exhausted and feeling unwell.

    I hope today brings more answers for you.
    Kirsten.
    Boyfriend Rio diagnosed NSHL 29th July 2014 (24 years old)
    Stage IVBSX (~15 cm primary tumour)
    eBEACOPP 30th July to 3rd December, 2014
    Post TX PET 12th January, 2015
    Results 20th January, 2015
    Complete metabolic response. Rio's remission has begun!

  7. #27
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    Today was harder than expected. We met with my doctor first, who went over the treatment options. One of those options did include meeting with a reproductive endocrinologist, Riosgirl, and harvesting and freezing my eggs. However, it would take 2 to 3 months and rounds of hormone injections. We decided instead to do an ovarian transposition, which essentially moves my ovaries up to my abdomen to protect them from radiation. I'll have that surgery on Tuesday. He'll also check if the cancer has spread to my lymph nodes. If it hasn't spread, they can administer lower dose radiation. On Thursday, I'll have a PET scan then be examined by the radiologist. The following week, my husband and I will go to the beach for 4 days and hopefully relax. On the 31st, I'll start 7 weeks of daily radiation and weekly chemo therapy. I had not realized that radiation would be so invasive. It will include 4 to 5 high dose, internal treatments that will require general anesthesia. The side effects of radiation and chemo might include irritation of my bladder and rectum, nausea and fatigue. I am feeling depressed today. I was supposed to go into work but went home instead and took a nap. I suspect I might have a urinary tract infection from the surgery on Tuesday and am feeling pretty lousy- fever, achy feeling, burning during urination. I was prescribed antibiotics this morning. I am also worried at how this will affect my relationship with my husband. He will see me grow weak and I assume he'll take on a caregiver role. How will we go back to normal after this? I'm worried about his stress level and lack of sleep too. Today is not my best day. And to think, treatment has not even begun.

  8. #28
    Administrator Top User lisa1962's Avatar
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    Sandy

    Indeed , a very difficult day but now you have a plan of attack. Understandably it nonetheless is overwhelming. Cancer is difficult and to get through it, can be challenging.

    I know you are worried about the stress this may cause your husband. When we marry, we never think something like this will happen or only happen to other people but the reality is cancer does not discriminate. Your husband loves you and took a vow. He will have the strength and as your husband will take on a caregiver role. Life throws many curves along the way and we adapt especially when it happens to a loved one. Many times, something like this makes a strong bond even stronger.

    We say this a lot here but try to take each day as it comes. Concentrate on the here and now. Medically, the doctors will take care of you. The path may not be easy but there is a goal.

    Lisa

  9. #29
    Lisa is right, sandy. Your husband loves you. Like POGuy told me, when you feel you have no more strength, just ask for it. God will hear your. Then you reach further and find it.
    This happened so early in your marriage which is so unfortunate. I know it may not seem like it now but it will strength your bond. It did ours and we have been married 45 years.
    As Lisa said, take each day as it comes. I viewed each day as one more step toward recovery. Yes, it was extremely hard on us. There were tears, fears, pain. I got through it by knowing God was always walking beside us. I was so thankful he led us to this forum. I was an emotional mess and so panic stricken. People here were kind yet firm, calming me and explaining my panic was not helping me or my husband.
    You have a wonderful dr.,Sandy. Rest in the knowledge that you or your husband can call him anytime. That is such a blessing. Do you have anyone that can help your husband with caregiving? Your hospital may have some things that could help. They had a wonderful pastor that came and talked to us. The infusion nurses were so wonderful to us also. Even the valets for our car were very caring.
    I immediately thought of your Mother too. She is probably in great emotional pain too. I was when our only child became so ill. Could she maybe help you if she wants to? I was my sons caregiver also and it helped me to help him.
    I have a friend who had Breast Cancer. She has been in remission 12 years. She told me that, while chemo was very unpleasant, she viewed it as life giving. I was so impressed with her positive attitude.
    Since your name here is Sandydog, I wondered if you have so dog. We have a little rescue Chihuahua that honestly gave me much comfort. He's so sweet and I hold him a lot. It comforts me and it helped take my mind of things at times.
    How wonderful you are going to the beach with your husband. There is something about walking or sitting at a beach. I used to go often and it seemed to fill me such peace.
    I will check every day for your posts. Know that treatment will end and you will feel better, Sandy. Please let us know how you are doing.
    His fight is over. How brave he was. 47 years of love.

  10. #30
    Administrator Top User Didee's Avatar
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    Good luck with surgery and treatment. I too was concerned how my husband would cope as I was undergoing chemo and rads with a pretty poor prognosis (15 to 20% chance of getting to 5 years without relapse or death which I have beaten, 5 years now)

    At first he was so down and depressed, bringing me down too but then he became my rock. He told me my only job was to get well and he did not realize how much he really loved me until I became ill. I must say that this cancer strengthened us. We will be coming up to 25 years next year. All we can do is take it day by day. Just make sure you listen to and obey your body.

    Have a great time at the beach. We have just had 4 days there too as we wait for hubby's op for very probable bile duct cancer.

    Having been through a cancer myself I feel has equipped me to better deal with him as I DO know the feelings involved.

    Hang in there and we are here for you.
    Aussie, age 61
    1987 CIN 111. Cervix lasered, no further problems.

    Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011. Scan Feb 2012 .still in remission.Still NED Nov 2012.
    Discharged Nov 2014.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma.

    Relapse Apr 2016. AITL. Some chemos then on to allo transplant. Onc says long remission was good. Still very fixable.

    SCT Aug 2016

 

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