New Caregiver - would like advice - Discussion - Bladder Cancer Advocacy Network Support Community

My finance and I have already been through a month long ordeal leading up to his diagnosis of bladder cancer. I will never forget the look on the Dr. 's face me as he handed me a picture of Jeff's bladder and said, " I think it's Cancer." I felt the blood drain form my face and i was speechless. Did they know this was a possibility so they could have prepared me I thought. He was brief and curt and hurried out to do three more surgeries that night. Needless to say as we were driving home after midnight with Jeff crying out in pain, he asked me what the Dr said. The Dr had never spoken to him, as he had said he would. I had to tell him myself! It was heart wrenching, and I couldn't even hold him since we were traveling 65 miles an hour down the interstate.
That seems like so long ago - after many meds, dr appt. trips to Er and ultimately the hosipal for some relief for him we got through it.
I think we were slightly in denial and still weren't sre what we were in for. Two months later, the pain that supposedly saved his life as the dr said, was back. I see how depressed and burdened Jeff is with fear of the unknown snd what lies ahead but I don't know what to say. I try to just listen and be available but he says that approach seems like I am not interested.
I am a nurturer and want to serve and do something to make things better. I try so hard but it just never seems to be enough.
I teach 3rd grade which takes a lot of my time and it's not easy to call in sick. When I am home with him, I feel helpless and can do so little, but I feel guilty and worry when I leave him alone. This summer I was here 24/7, but this time if he needs a BCG treatment, I can't be there every day all day long.
I would love some advice of how other caregivers got their loved oen through this and what I can do to ease his pain, encourage him and show him my love and support. Thank you.

By jmch
Posted November 8, 2009 at 3:39 pm
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I am a fellow caregiver, so can relate! Everyone here will tell you - get a 2nd opinion from a major cancer center. And while I'm not always in agreement that a major cancer ctr is the only place to get good care, I think you should at a minimum get a 2nd opinion.
You are in this for the long haul, as he will need to be vigilant forever against recurrence. I would suggest that he needs to have a doctor he trusts and is comfortable with, and it doesn't sound like you have that.

When Craig was diagnosed, there were some things his regular doctor did that the URO did not, i guess because general practitioners are more used to seeing us as people. One was to get him something for the pain (vicodan), so the instillation wasn't so bad. The other was to get him on an anti-depressant. I realize that better living thru chemistry isn't for everyone but he needs all his strength to fight cancer and may not realize how it is affecting him.
Craig also takes something for bladder spasms each time he gets BCG, and that does help.
Check out the patient handbook (link on right), and look at other posts, there is a lot of info about how people respond to BCG (varies wildly but tends to get worse, but there are things that can be done about that, such as reducing the dose), info about depression, and info about what this disease is.
Knowledge is power.
What stage and grade is/was his cancer? a lot of folks can help with info, knowing that will help us help you....

Jackie

By nancynursez637
Posted November 8, 2009 at 4:18 pm
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The way you were told, and that they did not tell him, is criminal. It is easy to prepare folks, you can often say that the presence of blood in the urine is likely to mean a tumor. What the tumor will be, we will ahve to wait for pathology. This sets your mind up for well, this is serious and will require treatment. '

I would seek a second opinion at a cancer center if at all possible, There they generally understand the stress of having cancer, and know what you need for treatment as well as support.

Folks here have experience with many of the centers including Cleveland Clinic, MD Anderson, Dana Farber, Some university hospitals. I would get a could of names and not go blindly into seeing another doctor.

Cancer is stressful enough, and you deserve all the support that can be mustered

NancyN

By RickB
Posted November 8, 2009 at 5:35 pm
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Annie,

Your story brought back memories of my diagnosis, as I am sure it will for many on this forum. There is no good way to be told, but some ways are better than others. Yours falls in the "what were they thinking?" category. I can only imagine what it was like for the two of you.

For me, and perhaps for Eudy based on your comments, knowledge is power. Does that make any sense? If so, is there a local Bladder Cancer Support Group in your area? They can be very educational, and enable networking with people walking in your shoes (both of you). You can also reach out to any of us to through the forum . . . on the phone . . . or in person (I'm sure you have "neighbors" here somewhere). I find that the forum is great, but sometimes a real-time conversation is better. We have a number of BCG warriors here, and I am sure they will have additional tips on coping like those Jackie provided.

Rick

By lsh
Posted November 8, 2009 at 6:18 pm
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Annie,

I am one of the BCG warriors that Rick referred to . I would be happy to answer any questions you may have. The reason we all recommend second opinions at major cancer centers is that most uros don't deal with cancer very much. What stage and grade are Eudy's tumors?

Lynda

By Lyyka
Posted November 8, 2009 at 6:25 pm
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Annie,

Eudy right now is scared, scared, scared. It is all so new, and when we find out about it everything is now, now, now, then wait, wait, wait. There isn't much time to get used to it, but get used to it we must. Just love him with everything you've got. Encourage him to talk, let him know just by your presence, kisses, and hugs that you care. Try not to take it personally if he hurts your feelings, but do let him know you're new to this too.

My husband is also very new to this, he's the one with cancer. He is also not accepting it very well, but pretending he is. I visit this site every day, have for about the last two weeks (it seems forever). The folks here have helped me tremendously in learning how to be a caregiver. I'm lucky in that I'm with my husband 24/7, so we'll go through this together every day.

Have you thought that he might be afraid you'll leave him? All my best wishes. We can learn everything we can about bladder cancer and support each other together. You are not alone.

PS: His doctor deserves to be castrated, then shot!

Stephany

By Eudys-Annie
Posted November 8, 2009 at 7:35 pm
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Thank you everyone. It is great to know that there is such overwhelming support for both the patient and the one that loves him. We are making it one day at a time. We have been on this website a ton and have learned so much, but it has brought more fear as well hearing for most people that even a small tumor at the earliest stage and go wrong so quickly! His Dr. has not seen him since his first diagnosis and gave us no written report of the type of cancer. He said nothing of further treatments or what may lay ahead. I guess we should have known because he told us nothing before the surgery nor had we even met him. We had dealt with only the PA who misdiagosed him as having kidney stones or a prostate infection. The surgery was just to see what else might be going on or so they said. Boy did we get our answer.

I am calling to ask for a copy of the pathology report tomorrow and we are in the process of looking into an oncologist. We live in Charlotte, NC . I just hope waiting from July until Nov. 19 ( his next cysto) hasn't been a terrible tragedy. He hasn't felt like his usual self and quitting smoking has been really hard on him.

He is in the group as well to hear things from his point of view which is often different form mine which can bring balance and perspective as well as tension and misunderstandings. We are commited to each other and in it for the long haul. Just not knowing what is ahead is the hard part as it is for all of life. How would we live our lives differently if we knew what was going to happen in the future? There is still hope, knowing that it may not be as bad as we imagine and also seeing that others have it much more difficult then you do and you should count your blessings. That is what true faith and trusting in God is all about .
I am praying for so many in the group as well believing God is in control, His grace is sufficiant, and He will be with us every step of the way.
I am so thankful we have found you all.
I think it would be great to have a support group here of people to visit with and talk to as I sure we will both need that later on. We also bought journals to keep, his more for an outlet for his feelings. He is a country boy as he says all the time, but feels and thinks about things deeply and privately.
I want to keep a record of his treatments, medications, names of dr and nurses, just details we may need to know hence, knowledge is power so we won't forget things and will be able to refer to them when needed.
I'll be in touch and am looking forward to building some meaningful friendships with many of you and also be an encouragement to others as well.

By Eudys-Annie
Posted November 8, 2009 at 7:37 pm
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Love the comment about the DR! It made me laugh! I am a forgiving person but I can't find anything kind to say about this man. He told me i didn't look so good and needed to go home and get some sleep. How Rude! Thanks for the smile!

By mycopper
Posted November 8, 2009 at 8:00 pm
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Welcome.I am a caregiver also.I keep all my husband's paper work in an accordion folder. I take it every where. I also carry a copy of all his meds. and procedures in my wallet. He also has one for me. Because its amazing how your mind goes blank under stress. My husband does not talk about it much either but little by little I have been able to draw him out. Its been over two years now.This is a great bunch of people and they will help all they can.

Candy

By 15yrsurvivor
Posted November 8, 2009 at 8:30 pm
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I see you are new and I wanted to say welcome to the website! Sorry for the circumstances, however.

My surgeon/urologist was the same way when he told my husband I had cancer. I was still in recovery from an outpatient surgery to remove bladder stones, and the doctor just came into the room, blurted it out to my husband and left! Not great bedside manner, but he was a good surgeon and urologist.

I am a survivor, not a caregiver, so I have no advice on that. But you will get plenty of feedback here!

By DrgnTrappr
Posted November 9, 2009 at 1:05 am
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Hey Annie,
First off I want to wish you both the very best and that I wish we could be having this conversation under different circumstances. Second thing is to dump that Dr. and contact the contact the NCI Cancer Center at iether Duke or Wake forest and get a Dr. there to treat Eudy here is the link;
http://cancercenters.cancer.gov/cancer_centers/dccc.html
I did not listen to my Wife and waited for allmost two years before going to the cancer center but it may have saved my bladder. The DR.s there do nothing but treat bladder cancer and will give Eudy nothing but the best treatment.
I remember having the same feelings when I was first diagnosed and how scared I was, this will get better in time and the more involved Uedy gets in his treatment the less his fears will be. Just hang in there and it will get better.
Have Uedy contact me I too live in NC, and have been fighting my bladder cancer for 2 years now, luckily mine is low grade, and the new Dr. thinks BCG treatments will finaly get rid of it.
God Speed Ron

By roadrunner
Posted November 9, 2009 at 3:21 am
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Welcome,
I know how you feel,,,,when my husband had his turbt,,,and we found out it was stage 3 and his bladder had to go we were both devastated,,,he was treated at the Cleveland Clinic,,,it just through us into
a roller coaster of fear,,he cried I cries,we all cried,its 2 years later,he has no bladder,,,and we are good,we do everything we did before,,,,he was 66 at surgery,,,for me I just through my whole self into doing what made him feel better,,,,especially the positive attitude,,,I made sure of everything,covered all the bases,,,,made everyday worth while,,,,never look at the dark side only the bright side,,,they say its stage 3 but that means its not stage 4 kinda thing,,,
always always stress the positive,,,if he keeps his bladder then he will have to do treatments,,,,not loose his bladder,,,,men,always wait til the last minute,,fear is powerful,but hope and love is more powerful.....ginger

By LadyJane123
Posted November 9, 2009 at 7:56 am
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Jeff should be able to be alone for his BCG's no problem. It isn't a painful procedure so thats not to hard to deal with. He will need to drink a lot of water afterwards to flush out the BCG and he'll probably want to rest for the day but its very doable. Some folks work the day of treatment or back to work the next day for sure.
Jeff is young and strong. He'll do great.

By DebbieMP
Posted November 9, 2009 at 9:39 am
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Hello and welcome to the board:

I too am a caregiver--what some may consider a highly experienced one! I took care of each of my parents who died of cancer (Dad of prostate; Mom of bladder cancer) as well as a mother-in-law (lung cancer). In 2008, my husband was diagnosed with bladder cancer. He went thru TURB, BCG and finally a radical cystectomy (referred to here as RC) and neobladder in early August of this year.

While my husband and I are very close, we are also very different. He is a little more accepting of his diagnosis and prognosis, I tend to be much more comfortable when taking charge and becoming as familar as possible with facts and options. I too am a nurturer but my husband realizes that and lets me "nurture" without hovering. We caregivers sometimes feel so out of control as the disease takes over thoughts and lives--not to mention, a third party in the form of what is sometimes an insensitive doctor.

What's worked for us is a very open discussion of mutual support (I suggest you encourage your fiance not lock you out of this, if possible--there are two "patients" in this situation just by virtue of the natural interdependency of marriage) starting with a question as simple as, "How am I doing?" when gauging whether you are giving each other what you each uniquely need to cope. Notice that I don't recommend "What can I do for you?" because the cancer patient does not know. A simple, "How am I doing?" when it comes to support has worked for us. If you can, as your fiance to ask you the same question from time to time.

I also attended every doctor appointment and beforehand made a list of questions we (or even just 'me') wanted answered. We were both vocal during these appointments and the doctors and surgeons were very respectful and supportive of this two-person approach.

Men do tend to withdraw into themselves to digest and while a measure of this is natural, continuing to do so is not healthy and could be avoidance. No, he doesn't have to spill everything he's thinking and feeling but a reasonable approach to researching options is fair--finding out everything you can about BCG, etc. and sharing it with him--especially any side effects--has a certain fact basis that shows your concern without the emotion many men tend to want to avoid.

I'm sorry you are going through this and especially sorry for the difficult experience with the doctor. But please focus on your fiance...change doctors is a good first start. Make sure you are engaged with a cancer center. Trust is everything right now.

In time, no doubt you will adapt. And by the way, my Mom's BC was way advanced for her to receive treatment so please don't let that scare you. This board is full of survivors, like my husband--courageous patients on both sides of this disease...cancer patient and caregiver patient.

Best wishes to you; we look forward to your posts and feel free to share openly.

Debbie

By fran1
Posted November 9, 2009 at 2:56 pm
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Hello, and welcome.

As many of the caregivers here will tell you, it is sometimes difficult to accept invitations for treats for just YOU and also to take time out for yourself, but if you can force yourself to do so, it will be very useful for your general and mental health.

Keeping diaries is a GREAT move, I found it very useful in many ways.
If you have a lot on your plate (and it sounds like you have an emotionally demanding job too) please accept offers of help. When people say "what can I do", ask them to double the ingredients the next time they do a casserole/baked pasta/other freezable meal, and pass on the extra bit to you so that you have that bit of extra time to relax and talk.

I remember being so worried about the hygiene in the house after my husband had surgery and when someone offered to come around once a week to clean the bathroom I first said "no" in embarrassment, but then agreed. What a treat and a big help that was!!

All the best, and keep letting us know how you are feeling,

Fran

By Stuckdh
Posted November 12, 2009 at 10:18 am
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I am not a caregiver but a "patient" so to speak. My wife is my caregiver. I have read a book called "The Power of Two" by Brian and Gerri Monaghan. I suggest reading it as either a caregiver or patient. It looks at the issue from both directions and they both give great advice. It made me feel how my wife feels and appreciate her more, and on the flip side it will give her a better understanding of my mindset and her denial in the beginning. Great book by 2 people that have been there. Its also inspiring.

Welcome to Inspire!

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