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Thread: Just diagnosed and an emotional mess

  1. #31
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    Thank you, all. Reading your success stories gives me hope. I'm happy to have found this community. Didee, I admire your strength and wish your husband well.

    I hope this experience brings my husband and I closer together. When I was first diagnosed, I actually wished he was more sensitive. He would let me cry for 10 minutes at a time, then make me stop. Now I am grateful for his unwavering strength and positivity. I just hope he is able to take care of himself too. My mother will be staying with us when I begin treatment to help my husband. I am grateful for her support but I also feel guilty for worrying her. When I came out of surgery, she overheard me telling my doctor I didn't see the point in living if I couldn't carry my own baby. She broke down then. I'm now determined to get better for her, my husband, and everyone else on my side.

    Marian, I do have a dog- a lab. She's goofy and sweet. This evening, I tidied up the house while my husband mowed the lawn, then we took her on a walk. That improved my mood a little. Now she is lying next to me and keeping my feet warm.

    I was relieved that my doctor encouraged us to keep our vacation plans. He said there are few things in life to look forward to and vacation is one of them. I am supposed to relax, enjoy myself, and get excited to start treatment the next week. I think the radiologist's explanation really scared me this morning. But as you said Marian, I need to think of it as life affirming instead of cell-killing. I shouldn't be afraid of it. It's the start of my healing process. The ocean is my healing place. I am looking forward to sitting at the water's edge with my feet in the water and reading a good book. Any recommendations for an uplifting, easy read?

  2. #32
    Administrator Top User Didee's Avatar
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    I read zombie books, lol. The ocean is also my healing and strengthening place as well.

    Now, woman, listen up. Guilt. Ohhh yes, we feel guilt but get rid of it. This is NOT our fault and not of our free choosing. Took me a while as I am a giver and nurturer to others and it was so very hard to have to accept it back. I did though come to the realisation that it was happening, I could not control that but I could control how I dealt with it. I also found that those close to me wanted to something, anything to help and I had to let them. I really do feel that the care giver's role is the hardest. I know it from both sides of the fence, firstly with my mother but I was long distance and not her caregiver. She was apologizing at times for all the worry she was giving my sister (who lived next door to her) and me (1500kms away in another state) This guilt she felt peed us off a bit as it was not her fault and I remembered that when it was happening to me and learned from it..took a while though to get it through my thick head.

    Now I will or am Hubby's support and caregiver a role that will become more active after his op and not being able to help or get rid of what is wrong with him is so ruddy frustrating and at times of course I am down about what may be, what the future holds. I much preferred being the cancer patient as it was "only" me being ill, not those I love.
    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

  3. #33
    I do wish you luck with your surgery and treatment, Sandy. And I do think it will bring you and your husband closer. I didn't realize we were closer until the end of his treatment. Once he began feeling better, I actually saw him look at me with gratefulness and admiration. He told me he could tell how hard it had been on me and how much he appreciated me doing so much for him. I told him how I admired how hard he tried when it was so hard on his body.

    I do think the key through it is communication. He told me when he felt I was not helping enough and I told him when I felt he was too demanding. But as time went in and he became sicker and sicker, I never complained to him. I worked hard at trying to make him as comfortable as possible and didn't say a word if he lashed out at me. Maybe you and your husband could read up on how this is going to affect your body and your moods. You are really going to need him and he needs to know that.

    How wonderful your Mother will help also. As the Mother of a child who has had 5 brain surgeries with a device implanted in his brain to stop his seizures so far, I do emphasize with her. She is in a lot of emotional pain. Are you an only child like my son? Do you have any other family members or friends that can help or are willing to? I know you will see much devotion from your Mother too.

    I think your wonderful dr. will be a huge help to you and your husband. To know you can reach him anytime will really help put fears to rest. And believe me, your dog will know too that something is different. They are much more sensetive to the humans they loveband their pain then we know. My sweet little Chihuahua slept snuggled beside me or in my arms almost every night. Now that my husband is doing better so far, our sweet little guy chooses to sleep in his own bed. It's amazing how he knew I needed comfort.
    As far as a good book to read, I just finished a biography on Laura Bush. She is really amazing. Despite a tragedy in her life, she went on. She's so calm and so strong. I really admire her.
    His fight is over. How brave he was. 47 years of love.

  4. #34
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    Didee, I'm a nurturer too but I can't imagine how hard it would be to become the caregiver. If I'm ever put in that role, I'll follow my husband's lead and remain strong and positive for him.

    I actually shared the news with my closest friend last night. I wanted to protect her from this scary info because she's pregnant and vulnerable but I felt she deserved to know what's happening if she wished. She said she already sensed something was wrong and would worry either way so I told her. I think she is upset and in shock. She said she will respect my need for privacy and space but will be there for me if I need anything. Would it help her feel better if I reached out for help? I'm a sympathetic cryer so I am selfishly avoiding people who are overly emotional. I realize how hypocritical this is (having made doctors and nurses cry at every visit so far) but to see a loved one upset would be too hard. My moods are constantly up and down. I feel good right now. The infection seems gone and I feel strong. I'm going to get better, we'll have a baby somehow, and we'll live a happy life. We'll see how long this feeling lasts.

    Marian, I have two sisters who live out of state. My older sister has been counseling my mother on the phone. We are all worried about her. She's worried sick over me. Unfortunately my sisters are not in a position to take over for my mother.

    I read American Wife, which I believe is loosely based on Laura Bush's life. It was interesting. I never got into zombies.

  5. #35
    You are right to watch your Mother. I was so worried sick iver my son I had a nervous breakdown. I was in the hospital a week exhausted with worry and tears. Rest helped a lot so try to have your Mother take time to herself. Speaking as the Mother of a sick child, it just tore my heart out watching him go through so much. I had to be made to leave his side.

    I almost had a breakdown with my husband's diagnosis. A friend thought I was suicidal (never....just exhausted and stressed out) and called the police. They had my son take me to the ER but the drs. Said I was just severely stressed. I managed to pull myself together because my husband needed me. I could not have or have afforded a hospital stay.

    I would reach out to your friend if you need her. Her reaction will tell you if she is comfortable with your moods and tears. My best friend lives 3 hours away but she calls me often. I have cried and criedvand rambled but she listened. I keep trying to get off the phone with her because she uses her cell to call me. Her bill must be so high but she keeps me on the phone. My pen pal from the Amerivan Brain tumor calls me often and I always end up crying. She too listens because she knows I have to get it out.

    You do sound very strong, Sandy. You are thinking positively which was hard for me. Please continue to keep us updated.
    His fight is over. How brave he was. 47 years of love.

  6. #36
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    Yes, now that my mind has cleared, I see how my mother is struggling. I was close to suicidal when I was first diagnosed then staged. My mother saw this and begged me to get well. Fortunately the antidepressants and anxiety medicine have helped so much. I will make sure my mother is eating well, resting, and taking care of herself too. I know that as I begin treatment and start feeling worse physically, my depression will come back. I'll need to be reminded then to stay strong.

    Marian, I'm sorry you endured so much pain with your son and husband's diagnoses. I'm glad you had good friends to lean on. I went to the American Cancer Society's website and registered for 4th Angel, a patient mentoring program. I hope I am matched with someone who has lived through this experience and can give me some guidance. I think my friend is still processing the news and needs time. Because I didn't have any symptoms (I actually went to the doctor thinking we'd try to conceive), this diagnosis was a complete shock to me and everyone else. In a couple weeks, I may reach out to my friend and see if she would be up for a brief visit.

  7. #37
    Your Mother may need anxiety Meds and antidepressants in the future. She does need to understand that you will go through a wide range of emotions maybe even lashing out at your husband and her.

    A Mother who sees herbchild so sick hurts so much no matter how old their child is. David means so much to me, the only child we were able to have. He became ill when he was 14. I felt like my whole world caved in. People didn't understand why I was so upset even my husband. But his pain was so great he went into denial without even knowing it.

    If you are put in the hospital over night or longer, either your husband or your Mother, whoever stays if they do, should make sure, if they spend the night with you,that they have a comfortable place to sleep too. I had some nurses do a cruel thing. All the rooms had recliners but David's. They bought him down from ICU and I noticed I had no recliner. I went down to the desk to ask for one but 2 nurses told me it would cost 10$. I had no money on me and my exhausted husband had just gone home. I ended up sleeping on the floor all night, not thinking to go to another floor to ask if this was true. I was just so exhausted. The next morning the charge nurse and dr. came in and were angry
    that I had had to sleep on the floor all night. It turned out the 2 nurses were just trying scam me out if $10. The recliners were free. The charge nurse went down to the desk and heads rolled. But I got my recliner.

    How wonderful,you signed up for a pen pal with the American Cancer Society. I'm so glad I had my wonderful pen pal from the American Brain a tumor Society and still do.mshe was of so much support and I tried to be of support to her. Her sweet daughter is disabled from a brain tumor. We really leaned on each other. I don't know what I would do without her, really. It will help you to be able to talk to someone who is going through it and really understands. They might have pen pals for caregivers too.

    There are many sites that can give good advice about caregiving. I know a caregiver needs their rest. I was not so fortunate except for when my son could get some time off to help me. My DiL is having a very hard time with it so we don't hear much from her.

    I think your friend will be supportive. She just needs some time to absorb this. I think you are doing well emotionally. You will have good days and bad days but you will get get through this.
    His fight is over. How brave he was. 47 years of love.

  8. #38
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    Marian, I'm furious at how you were treated by those nurses. I hope they were terminated. I appreciate your perspective as the mother caring for her child. We were not offered caregiver support at the hospital. I hope my mother and husband know that if I lash out, it's because I'm feeling unwell physically and emotionally. I will look up resources online for them. I'm hopeful that the standard 7 week treatment will cure me. My doctor believe it will if I stay strong. 7 weeks is not a long time. We'll get through it.

    While this is always in the back of my mind now, today feels somewhat normal. My husband is traveling for work until tomorrow. I hope he is enjoying the time away and engrossed in what he is doing. Physically I am a little tired but otherwise feel fine. I might try to go for a run. Before I was diagnosed, I was running 20 minutes every day and it helped so much with my moods. Tomorrow I will probably start worrying about Tuesday's surgery, which will show if the cancer has spread to my lymph nodes. I know there's no sense in worrying but I can't help it.

  9. #39

    Thumbs up

    Well, Karma for those nurses. The charge nurse turned on her heel and walked out. I could tell she was really angry. So, I guess heads rolled. It was cruel but God was watching.

    No, seven weeks is not that long. You have already shown strength, Sandy. You will need that strength. Did you go for that run? I wish I could do the walking I used to do. It was good for me and such a stress reliever. But since my injury and surgery, I no longer can. Sure miss it!

    You will have good days and bad days, Hun. You have people who love you caring for you and God by your side. You are aware if your husband's pain and your Mother's. You are looking up caregiving resources for them. So, you are ready for the fight in a good frame of mind. Just listen to your body. It will tell you what do.

    I know as Tuesday gets closer, you will get more and more apprehensive. But know they will tackle whatever they find.you may have milder discomfort then you think.

    Many people here will be thinking of you.
    His fight is over. How brave he was. 47 years of love.

  10. #40
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    Hi Sandy, I hope the protection for the rads can help make sure that you and hubby can have children in the future. I'm sorry for giving bad info - I didn't realize it would take months, to me it seemed it would only need a cycle...

    I am sure that you and your husband will make it through together and do great. I can only speak from the caregiving side, which imo isn't nearly as hard as going through treatment, but I suppose it really varies from person to person. You have the solid foundation of your marriage and it is good that your husband is an optimist - I myself am more of a realist that can tend toward pessimism, so I really do admire optimists. Rio is quite the optimist too - I think it helped keep him from going crazy during treatment and his optimism really helped me too. One thing that helped him a lot was to know only what he needed to.

    Rio and I had been dating only a couple of months when he was diagnosed. He was honest from the get-go that he might have cancer but I guess I didn't care. I felt (and still feel) that I had waited 24 years to meet him, so how could I just abandon him because the circumstances weren't the best? I ended up losing two people I had considered to be my best friends during his treatment after they ambushed me when we were all out for dinner and kept telling me that they wouldn't judge me if I dumped him because of the cancer thing. This happened not long after he was hospitalized and we were out because Rio wanted me to have some "time off". Not quite the time I had imagined!

    It's hard to make the shift from spouse/significant to needing care or being the caregiver. But we wouldn't be there if we didn't want to do it. Being able to take care of Rio and help made our relationship so much stronger. His parents came to help a few times, and Rio always said that he appreciated them visiting but that they didn't help the way I did. It becomes pretty intuitive. I spent every free moment looking after him and it was very worth it - especially now that he is in remission and his oncologist thinks he'll be cured and that he is "medically unremarkable" now.
    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!

 

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