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New Section
I’d like to welcome the people who are caring for a loved one dealing with bladder cancer to feel free to use this section of the Forum.
Need support?
Want to vent?
Share your hard earned wisdom?This is the place to do it!
Wendy
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19 Replies
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Pat each and every case of cancer here is different and every individual is different be nice if some people see this and no one in this thread but at this forum too many people playing Dr here at times and they haven’t a clue what they are talking about.. This is a support group when I want medical info I go to my expert and that is my surgeon one phone call away. Yes the recovery isn’t easy I tell it how it is and I also had the chemo done before the surgery. And the way my tumor was growing Dr. Malkowicz at the Univ of Penn said he had a better success rate doing the chemo first with my type of tumor T3 G3 but it was the way it was growing luckily it stayed contained I was very lucky there. GL, Joe
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Pat,, Good girl don’t get scared by what you read about how others react, everyone is different, and even after an r/c things happen to some that don’t to others..
It can be all over the place with reactions. Gene’s diagnosis was July 3rd, surgery Sept. 14. I am sure everyones is different in that respect as well..so go for a good time and don’t woory, do some nice things together,,Ginger -
Sorry I’m so late getting back. Thanks for your answer Holly.
I’ve accepted whatever Dr. Blute decides to do I can adjust to whatever recovery treatment there is and be here for my husband. It’s just scary at times to read some of the post and realize what he might go through. He is his own person and his own body so he will re-act his own way.
hugs
justme pat -
Hi Just me,
I looked back at your previous posts and see tht your hubby is being treated at Mayo’s in Minnesota by Dr Blute. That is where I had my RC/neobladder done and by Dr Blue as well. He is a great surgeon at a great facility. Am I correct to assume that Dr Croghan is the oncologist involved? He is also wonderful.
I did not see a stage or anything posted about your husband in your posts.
As hard as it is to be calm, I still encourage you to be assured you are in good hands. I found the folks at Mayo’s to be quick with info, and very on top of cutting edge treatments. If you need to talk with someone there I am sure they will call you back.
My cancer was stage 3 grade 3 of 3. They did my RC before chemo. Not sure how they decide which to do first, but I know they are good. I am very happy with my neobladder. They did it at St Marys hospital.
I hope this has helped – let me know if I can be of help, God Bless, Holly -
This might be stupid but this is where I’m at stupid or not. My husband is done with round one of chemo and will start round two next week. This chemo is being done before surgery.
He is 71 and want a neobladder. This has be afraid already from what I read here as it seems the recovery can be quite hard. Now grant you this hasn’t even been discussed with the doctor yet, the chemo isn’t finished and we at this point still have a small hope that he won’t have to have surgery at all.
So why am I two months down the road? That’s why I say it’s stupid guess I best get myself in the moment and enjoy it!
thanks for listening.
justme pat -
Karen, as you said we have no choice but to wake up every morning and just do what we do. I do too try to keep busy all the time. I find it helps me get through my day. Anyways, thanks to this site we can connect! My thoughts are also with you all. Aimeth
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Boy, can I relate to that! I have a 7 and a 4 yr. old (well 4 next month), still at home (we have older children too) and I have no family nearby either. This is a really tough battle and getting frustrated is so normal. Some days my husband is almost normal and the next he may look like he is on deaths door. It is alot to handle emotionally. Like being a single parent, but with so much more work involved. It is good to get out these frustrations though, because we don’t really have a choice do we. Everyone says ” You need to get out more” They don’t understand that with someone at home on Pain meds, etc..you can’t just up and leave when you want, and making a plan….well that is laughable really…we are even late to the Dr.s appts. The thoughts that race in my head about what is going to happen are so overwhelming sometimes…I look at the kids and cry, or I look at him and cry. But these days what I mostly do is try to keep so busy around the house that I don’t have time to, as often anyway. I have been listing things this to get rid of on craigslist.com ( if you have never been there check it out). I have been going through boxes and boxes of stuff that I brought with me from FL, and we still haven’t unpacked. But the bottom line is you and I will both get up tomorrow and start the day just as we did today. Maybe with a smile, maybe with a tear…but try to make it as good as you can…My thoughts are with you, and it you want to PM I am here to listen, and maybe you could listen too!
Karen
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
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I am relatively new to this group “Webcafe Forum, bladder cancer” and just discover this new addition. I am very much relieved, I have been experiencing a lot of anger, frustration and RESENTMENT. Sometimes I feel so bad for feeling this way. My poor husband but what about me. As I read through all your postings I realise that I am not the only one who goes through these feelings. This was much needed. I am 40 yrs old and have a 4 year old son. I have no family of my own near by so I feel I do everything and alone. He is always sick, on pain meds at hospitals, sleeping or there is always something going on with him. The fear of what is going to happen to us is overwhelming at times. Anyways its good to bent and know that someone will actually understand what you are actually going through, I personally hear many people tell me I can’t imagine what you are going through! Thanks, Aimeth
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I’ve been reading the caregiver book I posted about and just highly recommend it to everyone.
It talks about axiety, depression, meds, diet, weight loss, when to call a doctor what you can do at home. All kinds of good stuff.
Now I have another one called “Take Care” written by Beth Deckert who has a website
http://www.bethdeckert.com. Her husband has MS but her thoughts and reactions and solutions could be applied to any caregiving situation. Yes, she is a relative of my husbands, a niece but I’m not pushing you to buy the book just want you to know it’s out there.take care
just me pat -
Now that he has had both cataracts removed I think things will be a little better. I had to do all the driving for several months. Right now he is recovering from lung surgery.
Part of the problem is we moved to a new city this year and we don’t have the support network we used to have. We do have friends here but I don’t want to burn them out. I did ask a friend to come over and help with our yard as we have to get rid of the weeds.Part of my feelings are left over from when I had major surgery in July and could not take time to recuperate but had to do all the work when my sister left.
I also now that when he starts chemo or BCG again depending on what is recommended by the oncologist he is going to be feeling a lot worse.
To be clear I am not resenting my husband I am unhappy about the situation where we did everything the medical community recommended and still there were all the glitches in getting the tumor evaluated and all the delays in the BCG treatment. At each step it was logical and reasonable to do something that put off the BCG but the end result is months without any treatment for the CIS and the lung tumor.
Volunteer Coordinator
ABLSC -
Julie,
I can’t relate to your situation as it seems your husbands situation is grim.Its unfortuneate that his treatment was delayed for so long, you have been in this for some time now, 2001, now that it has progressed your role is going to be more important as he isn’t going to be feeling well.My husband had his bladder out Sept. 14th, but our situation moved along quickly, April and now no bladder, so as a caregiver I am off the hook somewhat as he is now able to help me. Resentment isn’t anything I felt, just being on overload, but if you miss some of the things you care about doing I think the resentment would lessen if you make arrangments to do them. In my case I figured, he didn’t ask for this, and would like it not to have happened at all. I guess the “for better or worse or in sickness or health comes to mind. May I suggest getting help for the things that aren’t getting done that were his responsibility. I had to make those arrangements in our case so I wouldn’t go crazy because the lawn wasn’t mowed etc. I am not in your shoes so hard to say, but I have compassion for you for what is happening, and I hope a solution to help your feelings of resentment will come. Ginger -
(((((((((((Julie))))))))))
I’m sorry that you are going through all this. My question is do you have any help where you can get away for awhile? Home health care or just someone that will sit with your husband while you leave for awhile.
I too felt really wrung out this week especially. Run, Run, Run, seems like that’s all I did. So yesterday I said unless I really feel it’s necessary I’m staying home!!! I did get to stay home, thanks God. I cleaned some and relaxed some and just felt good. It was nice to get up this a.m. to a couple of clean rooms. My husband went out to Walmart and I gave him a couple of things to pick up for me and he was happy to do that. I’m glad he’s willing and able so far to help. I would have called on someone else and intend to if and when the time comes.
We live in a town about 30,000 in Ks and I know somewhere in this town there’s help beside our daughter so she doesn’t feel too burdened either.
take care and come and keep posting whenever and whatever you want I’ve at this a short time and feel burdened at times too.
hugs
justme pat -
Hi, I recently joined the Forum. I am glad there is a section for Caregivers. That seems to be my full time occupation at this time. My husband Dick was first diagnosed with CIS in 2001. He had two 8 week treatments with BCG. Since that time he was checked every 3 to 6 months and had several biopsies done. The results varied from normal, inflammation, atypical cells, suspicious cells in no particular pattern. Last winter we discovered the cancer had spread to his ureters and renal pelvis on both sides. We have had nothing but delays in getting the cancer treated. He also has multiple problems that I’ll write about later. Right now he is recovering from lung surgery as they found a cancerous tumor in his right upper lobe. The most likely diagnosis is metastatic cancer from the bladder cancer.
I find myself having to do everything and I resent it. We signed on to support each other not have one of us do everything. I know sometimes we have to take turns but all I can foresee is it will be my turn to be the caregiver from now on. People keep telling me to take care of myself and I agree with them and do have a couple of activities that I like to do but the doctor appointments come first and my meeting get set aside.
I don’t expect any answers I am just writing about how I feel.
Volunteer Coordinator
ABLSC -
justme,
I think thats a great way to pass the time, and all you learn someone here on the forum will benefit from your advice if they don’t read it themselves. Be sure to pass along any good tips you have!!!Ginger
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:)Well, this is a wonderful new home.
I wanted to share while at chemo today with my husband I started reading the book
“Cargiving” it looked like it might be a great support book for the coming year so I just ordered it from the American Cancer Society.Since I’m so new at this and must admit afraid to death I thought it would be helpful to learn from the book too and keep it as a referecnce.
justme pat
p.s. forgot to say there was no tax or shipping charges either if you live in the USA
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