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Caregivers need emotional support too
As a caregiver to my husband who was diagnosed with PNet in September of 22 and found out that he has had it since 2014 undiagnosed until September when they removed a benign mass from his colon but found suspicious spots on his abdominal wall.
When he was 1st diagnosed (before the oncologist got all his records and found out how long he had actually had this cancer) his oncologist said that this was a slow growing cancer and my husband would have between 2 to 5 yrs. Well at age 75 we were ok with that. Fast forward to about a month and a half later and they did a galiaum scan and got his medical records from baptist downtown NOW they have the full picture.
I asked the oncologist "now that you have the full picture of the cancer history and progression, what is your prognosis" he looked at me odd. I said well you did say 2 to 5 yrs when we first met with you, now that you know its stage 4 whats the prognosis,(I wanted to prepare both my husband and I), The doctor replied " I dont like to assign numbers, it can hurt the patients outcome or give them false hope"! I was thinking, you were quick to throw out numbers before you knew the full story.
I am still working and dealing with a back injury and fighting workers comp and all the bills this disease brings. I feel horrible because I cant be home with him as I watch him slip further and further away from me. My shift leaves me about 2 hrs before work (if he is awake) and about 2 to 3 hrs after before we both go to bed but he his usually dosing in his chair so not so much quality time.
I had to tell him that we could not afford to rent a convertible he wanted to rent to take day trips, when I take off next month for a week because of all the bills. NOW I feel like I just took away the last thing he really wanted to do. How do I deny him that even if its at my own peril.
I no longer spend time doing things I love well we both love because I am just bone tired and so is he usually. He can not take too much cold and I cant take heat due to my heart so it leaves very little common ground since anything below 82 seems to make him cold nowdays.
Having someone who truly understands without feeling like I want something from them other then someone to talk to is non existant. Most of our "friends" have disappeared, no calls, texts etc
I cant really talk about things with my husband because it worries him or upsets him when he is altered so I just hide away and cry but put on a game face for everyone else. Who do caregivers have to help us??
To anyone who met my husband today you wouldnt think he was in too bad of shape but if you REALLY know him, you see it. Even our new doc who has only seen him about 3 times noticed his altered state and will be testing him next month at his next visit. Its subtle changes in his moods and behavior or his ability to recall things or even do simple tasks that were once his strong suit like math in the check book. I started to get concerned about this when he messed up the checking account 2 months in a row (totally out of character) but when the 3rd month left him confused about how to fix his mistake even though I was using the simplest explanation possible that I realized the cancer may have now spread to his brain too. It started in his pancreas but went undiagnosed at that time when he had a mass removed along with his spleen. Now it is in his liver with "too numerous to count tumors" and on his abdominal wall where it was 1st detected. UGH
CANCER SUCKS
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@linric70 I am so sorry, your doctor isn’t helping you very much at all, is he? I think you have the right now to ask for a second opinion. You need doctor who is caring. Maybe see if you can get a referral to Palliative Care. They are very good and try to help you with managing side effects of medicines.
https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care#:~:text=Patients%20in%20palliative%20care%20may,for%20them%20and%20their%20family. This link will give you more information about palliative care.
When you contacted the drug company, did you speak to someone in customer service? Or, did your doctor call on your behalf?
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1 ReactionI am communicating with the drug company myself. We are emailing each other. I’ve given them the doctors name.
We never talk to the doctor when they call, it’s always his nurse. She finally returned our call today about the amount of hot flashes and night sweats he is having and the only help she gave was “drink more water”! Needless to say he drinks more than 2 liters a day already, I don’t think he needs to be having to urinate more at night so he’ll get even less sleep!
We travel full time in an RV, we have full timed for 5 years. We get delivery of his pills by FedEx, usually at a Dollar General or
Walgreens, whoever receives FedEx deliveries. He gets his blood work don’t at Quest, in which town we are in. His next shot will be at a urologist in Spokane. We make all the arrangements.
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1 ReactionThank you clkurth🙏
I am sorry to hear about your husband's condition... l imagine it must be tough for you too. People should at least have the decency not to promise things, we have enough on our plate without their BS.
I hope you like home baked cilantro bread😉 I could bring a loaf along. The reflexologist was here for my husband this morning and he greatly enjoyed it.
Wish strenght and perseverance 🙏
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3 ReactionsHello,
My husband has cancer but as a sole caregiver, without family or friends for support, l'd appreciate some contacts too so if you care to include me l'd like that🦉😉
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3 ReactionsHello linric70,
I'm so sorry to hear your doctor is such a J****!! How dare a professional talk to a patient like this! For whatever it's worth l think you should report the guy! One oncologist here, supposed to be a super woman in the field, told my husband too he had a few months to a year at best. I can still see her face, it looked like she even enjoyed it a little!! Believing herself to have that kind of power. Luckily we could change to another oncologist. I mean, we know what we are dealing with here and it's bad enough as it is but as my breast surgeon said - NOBODY KNOWS with absolute certainty when a person is going to die and that he stopped counting the patients who were still around five years later.
I wish both of you love and perseverance 🙏
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3 ReactionsOne of the resources for prostate cancer is The Assistance Fund. I’m so sorry your doctor is not more supportive. The first doctor my husband saw (urologist) was not supportive. I’m so glad he found another doctor. My husband feels that his urologist, oncologist and radiologist were extremely supportive. Yes. All the treatments have side effects. His ongoing hormone shots and the pills do have side effects and are our biggest expense. Keep a list of possible assistance sources. Keep checking. Many sources help until their funding runs out.
(My husband has metastasized prostate cancer. We are hopeful.
Thank you so much for your support. We found out that there were grants to cover the pills when we went to pick them up - it was a rude awakening. My husband was accepted in the Taf grant program which reimbursed the money we had paid originally and continues to pay for his meds for a year. The doctor gave us zero information that grants were even available! I believe a second opinion is needed.
Yesterday when the urologist’s nurse finally called back the only help she gave him for his horrendous sweats were to drink more water! His arms, hands chest and back literally drip sweat. I’ve been through menopause and had night sweats but not like this.
We are full time RVers. We are now in Northern California heading north. I was uncertain about continuing our lifestyle (we’ve been doing this for 5 years), but my husband wanted to continue our journeys. I think it helps that we are outdoors everyday and pretend that everything is normal. We have to pick up his meds at a FedEx delivery store and get his blood work done at Quest.
My mom had dementia and lived with us for 7 years. It was hard juggling work, kids etc. This was in the late 90’s when there was little help for caregivers. Thanks for the invite - wish we could meet😊
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1 ReactionThank you for your supporting words. I wish you the best in your journey.
The interesting thing I found when we went in for the diagnosis was a “no recording” sign. We recorded him anyway😄
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1 Reaction@bigmaya and @blue2 I know an in person support group would be so helpful for you. Have you checked with the Area Agency on Aging in your town. They might know of some support groups. If their is a social worker in the doctor’s office, they might know of resources. There are some Facebook groups, also.
I hope you find some support soon.
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