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just venting
It’s been months since I have posted anything – I read all the new posts every day & have kept up with all the ongoing struggles with this horrid disease. My heart goes out to all of those who have lost loved ones,& those who are watching their loved ones decline. When I read some of these posts, I realize how little support we have. Bob’s illness is old news now- our little network has gone on to other things of interest. When people call, they ask how he is but really don’t want to hear how he really is- so now we just say ‘not too bad’ & that’s the end of it. They don’t want details- they are calling because they think they should but are really only waiting to hear ‘he died’. Sorry, but that’s how I feel. Even our kids don’t call as often or come around. I’ll admit, we are in limbo, waiting for more tests, or test results- it’s months between appointments & results & followup appointments. Meanwhile I see him declining. We went away for a weekend to a casino/hotel with my sisters & brother -in-law & everyone kept telling me how great he looked, then changed the subject. No one ever looks either one of us in the eye & asks “now, how is he really?” They don’t want to know. I would love someone to ask so I could vent a little, tell them how we have to pack a separate suitcase with bedpads & diapers & garbage bags, tell them how I can’t stand to look at him shuffling off to the bathroom wearing a diaper, how the sound of him tearing the tape on the diaper makes me cringe, how I can’t stand being in the same bed so I end up on the couch.We are sick of cases of diapers, continence pads, bedpads, & laundry every day.The spread of the cancer is horrible- but the botched surgery is worse. This man is dying- we know that, but being incontinent is a nightmare. He is only 61.Bob will not talk about what is happening. I came in last week while his nurse was here,& caught the tail-end of their conversation. He told her how he was spitting up blood- news to me! He doesn’t tell me anything- hasn’t for years, long before this started, but that’s a whole other issue isn’t it? Do I sound bitter? Well, I am. I don’t want to be a caregiver- I never wanted to be a nurse. We have been married 41 yrs. I’ve always worked & made the decisions etc. When I got sick about 10 yrs. ago, I begged Bob to take over things, pay the bills, make the decisions, do the things that I did & look after me.Well that lasted about a day & a half & we were back where we were. I am tired! I can’t look after him & me too. We look after an apartment building. Now that he can’t work, I must work harder than I ever have before in my whole life. Bob has no benefits, no pension, so I have taken on all kinds of extra work in other buildings for extra money. In a way I enjoy it because I get to escape watching him, but I am exhausted- I don’t know how long I can keep it up. Wow, I didn’t mean to go on so long. I just re-read this & almost deleted it, but I’m going to post it, maybe others are feeling a little of what I am??? Lorrie
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13 Replies
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There are days I could care less about anything but I carry on that’s my nature. But this sucks no sex like it use to be, with the pouch worrying when I go out where am I going to be when I have to go. Just simple things now are very complex. I am going for my 9 month checkup soon and I still have days I’m not right. I had many medical problems before this surgery not even one month recovering from my left hip replacement I get told I have a 2 inch tumor on my bladder it’s like holy shit man. Then I had the chemo b4 the surgery so thats 3 months and I have to wait 2 months b4 my surgery. I had a Bifemoral Bypass I have posted it’s like an open heart surgery but down in your abdomen for arteries blocked in my legs. When my surgery was over my wife didn’t tell me till we got home they had a hard time getting me back and stabalized she told me she was very scared there for awhile. I never posted this but I figure it happened may as well. And then that surgery the bypass I had a 15 inch incision took my surgeon an extra 2 hrs to cut thru that because of all the scar tissue. Well to bring it to end I had the 2 UTI’s and then the infection in my blood the MRSA and I am feeling better these days but damn I need a break for awhile. Hopefully this is a new start and I can get on with my life just that things happened I never dreamed of, first the cancer and then the post op crap. I told God you can try and beat me for being bad when I was young ;) but I can accept what you dish out because you created a tough man. Joe ;)
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Lorrie,
A little get away sounds like it would benefit you in alot ways. If Bob can have great care while your gone it just might be the ticket for you. He may also enjoy the separation as the 24/7 gets tough for both..don’t let the guilt eat you up,do the best you can…..Ginger
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Hi everyone- Thank you all for your input- it means so much having you all listen to my ranting.It really helps to let it out here & not to Bob. When I go back & read my posts I feel so guilty about sounding so selfish- I remind myself that it’s ‘not about me’.
Ginger, you are a wise woman- I won’t ‘jump ship’- I may run away for a few days soon though.
We will continue to coast along until we get the results from the PET. We picked up the disc from the last CT scan to take to McMaster on the 10th. The appt. with the Oncologist back in Kitchener won’t be until the 22nd.
Thank you again to everyone-Lorrie
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Lorrie,
I can feel your pain, the history of what has went on with your husband is certainly not the norm, thank God, of course the bag would have solved alot of his problems he is having now but thats all over the bridge. As my husbands caregiver these days being in a much better position than you with no cancer I still wonder what day will be my day..you have endured much,,I can’t even wonder what he must feel like,,,I am sure he just wants to get better and feel human again. I am 62, so I can relate to feeling how can this be happening at this age we all thought were golden years….sometimes spiritual help is in order, if you have faith, give up the pain you feel and recognize each day as a gift with him even through the diapers, bed sheets, and a constant running neo-bladder…look for something good each day, call the kids, tell them how you feel…he has been through so much, I think alot of your anger comes from other places as well as the illness, communication etc. I guess theres no guarantees when one will be hit with something like this in ones relationship, but this is not the time to jump ship, you will be glad in the end you endured…take care, Ginger -
Julie who’s to really say what Dick’s stamina really is or can he really accept all this change. I know for myself somedays I just don’t feel well and don’t want to hang. I do find this to be true we can not live in the past we must cope for what we have even though it isn’t pleasant and move on and make the best of it. If you spend your life thinking what you like your life to be instead of what is it makes life hard to live. Cheers, Joe ;)
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Lorrie and Julie, I’m so sorry you are having such a long hard time of it. Makes me angry at myself for getting so upset for the short amount of time that I had to do everything. Guess I need to be grateful but at the time it seemed like forever.
I’m glad Deverne and I can communicate and maybe it was me telling him I would be very happy to have him take some responsiblility for his illness. It wasn’t much later he was reading all the information we came home with from Mayo, was taking an active part in getting his supplies, now has researched some new places to get supplies as he like me wasn’t really happy with where we were directed at first to get them.
I realize he is different from you husbands as he came home cancer free and of course that had to be pointed out to him too. We are both learning patience and acceptance and can’t imagine how hard that would be for both of you.
Please keep coming and venting and letting it out as you have to or it will eat you alive.
I will add you two to my prayer list and ask for prayer from others for you.
May God’s love surround you.
patd
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Hi Lorrie, Just got back from the Cancer Clinic Dick did not want to anything else except come home.
I find him to be more and more passive about doing anything. A friend who saw him Saturday told me today that he didn’t seem interested in anything. Dick then said the pain he is in is all he can focus on. I’m working on accepting that I will have to monitor everything. I go to all the appointments so I can facilitate getting whatever is recommended. I can’t imagine trying to work too.
What a blow to have your own family shut you out. I am wondering whether to speak to our “friends” how they are making it evident that we are being excluded. Sometimes 60 and 70 year olds can be as aggravating as 12 year olds.
Volunteer Coordinator
ABLSC -
Hi Julie- Just a quick note as I am going out the door. The continence nurse has suggested a condom catheter, which might be easier during the day. Bob was supposed to pick up something to measure his penis with—just another example of “if I don’t do it for him, it doesn’t get done”.
Oh can I ever relate to not being invited. For over 30 years I had every Easter, Christmas & Thanksgiving plus a few Birthdays thrown in for good measure. Last week for Easter, my sister ( I have 3)had Easter & invited everyone except us.Nice eh?
Gotta go & finish painting an apartment- Lorrie
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Lorrie, I could write and say what your are saying. I have to do it all these days and most days I feel it is beyond my capacity. Or I could write about the people who don’t invite us to come over or who tell us we will get together and then forget and go for a ride instead. I was feeling very hurt yesterday when this happened.
I read all the time about people getting chemo and wonder why they don’t recommend it for my husband. I am truly amazed it is taking this long to decide if they will offer it to your husband. I understand to be truly miserable try chemo. I have a friend who had terrible neuropathy after hers.
On another note if the Dr. think your husband will not become continent have they suggested he wear a Foley catherter?
Dick wore one for 9 days this month after his hospitalization where they messed up his medication so he had a gout attack and withheld his prostate meds so he couldn’t release urine. It was certainly easier to manage than the time your husband is having with incontinence. Next time I will be much more forceful with the Dr about them giving him all his medications that he is prescribed. Julie
Volunteer Coordinator
ABLSC -
Lorrie — You are so articulate! Thank you very much. I’m Susan, stage
4 but blessed (for now) with feeling well. Many mets in liver and lungs
though. I worry that evey little twinge (a cough, bowel changes) signals
the beginning of the end.How am I handling the situation? Because of so many people’s inability to ask
about and invest in caring about people with cancer and their families
(presumably because it would hurt too much)– as you so clearly articulate,
bless you — I spend most of my time “Passing for Well.” I take extra case
with attire and grooming, plan in advance to walk with an energetic gait,
and certainly not let on that I wear diapers when I’m be away from home
any more than an hour.When people ask how I am doing I say one of two things: (1)”I feel well today,
how are you today” OR (2) If I feel sick “I feel pretty low energy today, how
are you today?”I surely worry about the days to come when I won’t be able to fake it and the
acting and its pressure may be passed along to my family caregivers. May they
find the strength to be direct!I do have a very few friends/relatives off and many fellow sufferers on the forum
who do care and express it — even risking me “getting mad.” Bless them all!You vent very well, I wish I could “let go” like that better —
Appreciatively — Susan
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Dear Lorrie,
I recently had an operation to remove scar tissue from the neck of my new bladder and uretha and luckilly for me it was a success.
My urologist said that it came from a poor bladder to uretha connection from my RC performed by another Urologist.
Prior to this latest surgery I could hardly urinate at all and it was a strain and an effort to empty my bladder which usually took 15-20 minutes.
What Bob is going through right now is awful and I can appreciate the stresses involved on both of your sides.
You mentioned they could operate to try to correct the problem which I hope you guys will consider if not at least with another Urologist. And as you have mentioned what harm can it do as it could not make things any worse.
I really feel for the both of you but please hang in and vent vent vent whenever you feel the need.
Bob has had his big RC surgery and the corrections need to be made asap to give him an improved continence.
I have been following you guys story although have taken more of a back seat until I feel I can add something.
It is a real shame how this terrible disease can take a hold of us this way and move in many directions. Non of us know what is around the corner with this bladder cancer journey…we can only hope for the best outcome.
I wish you both all the very best with Bob’s scan on the 10th and that they will be able to progress very quickly with a treatment plan for him.
Best Wishes
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum -
Hi Leigh- Thank you for replying to my post. Bob hasn’t had any Chemo- it hasn’t been decided if it will do any good or not. The cancer has spread to his lungs.He is having a PET scan on the 10th which should tell us.The incontinence is due to the surgery for his ‘cadillac’ neo-bladder & the subsequent screwups. Apparently there is significant scar tissue where the catheter was incorrectly installed in the first place.The urologist said that they could operate to remove the scar tissue but it might make it even worse!! How it could be worse is beyond me since he has no control whatsoever.I’m glad there will be an end to your incontinence. Bob had his surgery Oct.2/07 when he was told he would be cancer free & back to normal in 2 mos. what a joke!!
Best Regards, Lorrie -
Dear Lorrie,
I am happy you did not delete this message before posting as it will help so many.
I saw myself in your message being the diaper wearer of late as the incontinence is taking hold during my chemo treatment. I guess one added benefit of having chemo before RC is that the incontinence issue certainly isn’t an issue.
As I am having adjuvant chemo it realy is a big issue and I wake several times a night and waddle to the bathroom to clean myself up and change my diaper. This of course wakes my partner and we both have sleepless nights. Washing bedding is a contstant chore as mats don’t always absorb larger spills and diapers leak also constantly.
It really is soul destroying on either side of this predicament and all we can do is hang on in and vent when required.
Communication is the key and if you have it then things are made so much easier. My partner and I both I guess deny the now and what could be in the future which does not help. That is why I come here so often and read and get get support from others in the same boat.
I am so grateful for all the people that have helped me through my bad days but never would have guessed at 38 I would be incontinent which for me will only be at night time temporarily until the chemo ends next month. It has been a hard slog the last 4 months but an end is in sight. I pray and try to remain positive that my CT scans show no spread of desease as I fear the crossover to stage IV being confirmed.
If it wasn’t for people like yourself who took on the caregiving role were would we be…we truley are grateful although find it hard to express our emotions in these sometimes tortuous times.
From me to you and all of our caregivers thank you so much for helping us through these times and let us all be blessed with many happy days with our partners, families and friends.
Kind Regards
Leigh
Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum
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