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Need support

Shaunalee
Posts: 1
Joined: Sep 2008

Hi, I am just looking for some support. My dad has bladder cancer, he is living with me as I am his main support. I am not sure what stage he has, but it is not good. He had a cat scan done a week or two ago, and they have found that the cancer has spread. It is now also in his kidneys, his liver, in his lymph-noids and "all up his side" - (my dads words). We got him to the hospital just over a month ago (he is a very stubborn man, it took an intervention of my brother, my husband and myself, telling him he was going in, we had called an ambulance). I just knew that if I didn't get him in to the hospital, he was going to die very soon. It turns out his kidneys were not working and he was VERY low on blood (because he had been peeing out so much blood for so long). He was in the hospital for just over a week, during that time recieved 12 units of blood. He did have his bladder scraped, and a hose put in between his bladder and kidneys. He was in the ICU for a few days after his surgery. For awhile there, things seemed hopefull, I thought maybe he could fight it, but I guess the real "tell-all" is the cat scan. So after the cat scan, they told him that it is too far spread, chemo won't do anything, radiation will kill him. He told me they said he could have a year or two if it slows down, but the way he is right now, I just can't see that. I am reaching out because I am just trying to get some information. I am trying to get my dad to let me come with him to the doctors tomorrow, so I can get some more information. The hardest thing right now is how much pain he is in. He gets huge clots in his bladder, and they can't get through, his kidneys hurt, he is having severe back pain. He has these spasms untill the clot passes and then the pain temporarily goes away. Well now the pain is also in his leg? The only pain meds he has been given are percacets, and they don't work anymore. I feel so helpless, I hate seeing him like this. There has got to be something they can do, or at least some better pain meds. My dad is only 50, not that it matters, it seems there are people who are 30 that are fighting this. I am a stay-at-home mom and I have 5 children (#6 is on the way) so I can be here for my dad. I am just over-whelmed right now, I just want him to be pain-free or at least be able to manage his pain. This is a horrible way to die.

Your CSN Staff's picture
Your CSN Staff
Posts: 200
Joined: May 2008

Dear Shaunalee,

We are sorry that you and your family are going through a difficult time. The easiest way to locate other CSN members with similar experiences is to type keywords (such as "bladder cancer," "caregiving," "pain management," etc.) on the search bar at the top of the home page. You can refine your search by clicking on the “Advance search” link listed underneath the search field. The major categories of content on CSN are blogs, discussion boards, personal pages, etc. For example, if you are looking for a specific posting on a discussion board, you can limit your search to discussion boards only by clicking on the "discussion" and "advanced search" button at the bottom of the "advanced search" box. Remember that you must be logged on if you want to post anything on a discussion boards, view personal pages, use the chat room, etc.

Cordially,
Your CSN Staff

Kat9854
Posts: 4
Joined: Mar 2008

Hi Shaunalee,

My father has bladder cancer as well. My father was in a lot of pain as well due to the blod clots but he had his bladder removed and that solved the issue w/ his pain. Have the doctors considered removing his bladder? this will releive some of his pain that is due to the blod clots when he tries to urinate.

Chyna1
Posts: 8
Joined: Oct 2008

Hi Shaunalee,

My family and I are praying for you. My husband age 57 was diagnosed this past June with Grade III invasive carcinoma of the bladder. He had his bladder, prostate, appendix and lymph nodes removed Sept. 15th. We have been blessed not to have pain. So far anyway. We will be seeing the oncologist for a 2nd time week. Anyway not about us but we are praying for you.

I am working full time outside the home and we have 4 little ones at home. I can relate to your feeling of needing to reach out to someone..

samjan
Posts: 2
Joined: Mar 2008

Shaunalee

I can really feel your pain. I am sixty and also suffering from bladder cancer. I started as ovarian cancer and has spread to my bladder.

Just love your Dad. Don't obsess about the cancer. Love creates millions of positive neurochemicals in the brain which are very healing. Your dad knows what he is up against. There is a good chance he does not want to talk about or dwell on the cancer. Having his family around him is the best situation possible. Laugh, have fun with him and stay positive. Don't dwell on his illness or give it anymore energy than it already has. If you need more ansers, do what you are doing on this chat line. Ask questions. Just stay positive around your dad. He will talke to you when and if he is ready.

I think you are a wonderful and brave young woman. Make what time your father has as wonderful and happy as possible.

Samjan (Janet)

Chyna1
Posts: 8
Joined: Oct 2008

Shaunalee we are praying for you. My husband was diagnosed with high grade invasive bladder cancer on June 4, 2008 (age 57). He had no pain, no idea except some bleeding when urinating which we were told was due to blood thinners he takes. NOT SO.

Sept. 15th he had surgery to remove his bladder and create a stoma, removed his prostate, appendix and 55 lymph nodes. His cancer had metastasized to 1 lymph node. Now 18 weeks of chemo. BUT NO PAIN. Praise to God.

I admire you a lot. Having 5 or 6 children at home and being a caregiver is not easy. We have 4 small adopted children (and 6 grown kids). Our little ones at home now are 3,5, 7 and 11 years old. At the present time I am working full time outside the home and caring for my husband and the kids.

One major thing we have learned is to ask for help. There are many wonderful people that will help if you just let them know you need something. Another important thing is to take time for YOU. It may seem impossible but if you dont take time for you then YOU will be sick.

My family and I are praying for all of you in your home and your dad. I am praying for you for wisdom and strength.

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