That is wonderful news that your husband has improved since starting the chemo treatments. He sounds like a true warrior in fighting all the way. It would be near impossible to not feel depressed at times during an ordeal like both of you have been through. The important thing is that he is able to pull himself out of it and start again, and he has you as a great support partner.
And being someone who deals with chronic fatigue, I can say that the feeling of sheer exhaustion sometimes feels like depression because there just isn't energy left to do anything else. I also go to Vanderbilt for my post-surgery followups and I have been very happy with the care I receive. I wish both of you the very best as you go forward.
Best wishes... Catherine
TURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
What my husband wants more than anything is to get back to work. He is a university professor who loves his research and his students. So, I think focusing on that is a great idea.
You and I are alike....I need something to occupy me while I exercise, but my husband is such a geek (in a wonderful way!) that he is content to think big thoughts while exercising. I am tempted to just throw him into the pool to force him to exercise (kidding), though I think if I were to raise the temperature of the pool he just might think about doing it. Raising the temp requires me to crawl under the house where there are spiders....big hairy spiders....but if it will get him into the pool I'd do it.
For now, until the chemo hits in a couple of days, my focus is to stop waiting on him and make him get up to get what he needs. He agrees that I have been so focused on taking care of him that I have made it too easy not to move. But, of course, in a couple of days he will be so sick again that I will need to fall back into the intrusive caregiver role.
By the way, I see that you are starting BCG treatment. Although it didn't work for my husband, it was not too hard on him. I hope it goes smoothly for you. (My husband had been exposed to TB in the past, so they think it was less effective for him than it is for most others.)
RD - it sounds like indeed you have thought about this very deeply - wish I could add something substantive. Are there any goals that your husband may have - e.g., looking forward to another grandchild, seeing everyone over the holidays, etc. - that might motivate him to "get prepared" for those events? I know that is very easy to say and very hard to do, it has to "come from within." Perhaps set up a LCD TV by the pool so he can watch a movie while he swims? I know that sounds a bit weird! Again - sorry I don't have any other ideas on this, I know that if I were unable to walk, I would have a hard time finding an exercise regimen that would allow me to use my arms on my laptop while exercising the rest of my body - argh. Needless to say, I wish you and him well - you will be in my prayers!
T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in October
The meeting with the oncologist went well yesterday. My husband's blood test results show great improvement and the oncologist is extremely pleased with how much better and stronger my husband looks. We had a frank discussion with the doctor about fatigue and depression and have a good plan for moving forward.
He is getting infused right now, and is feeling quite positive. We both know that he will hit bottom in a couple of days but he said that he will work hard to remember how good he felt yesterday and today and that this will help to pull him through the really bad days.
Thanks to everyone for being so supportive and for all of the great advice and suggestions.
Thank you so much for this. You have told me exactly what I need to hear. I think that I will need to be more assertive with the oncologist and especially with my husband. At this point I would love to have people in the house to help. Unfortunately, we live in a very small town in the middle of nowhere. So, I don't know whether I will have any luck with that. But, I will try.
Again, your strong words of advice are what I needed to hear and the information you shared is what I am lacking. Hearing from someone who has been through chemo and who is also a very informed person is wonderful. Thank you.
I have been reading the posts and wanted to add my two cents and welcome you to our community.
First of all know that I have seen a great deal of chemo and while not a doctor but can tell you as a survivor a bit about going through it. One thing to remember is that it progressively wears on you not only physically but mentally as well. I don't imagine anyone navigates cancer without facing depression at some point or the other.
Another is the fact that chemo suppress's the immune system. I was very alarmed when you said he had bed sores. Infection can be very dangerous and open sores are a very real concern in this case.
Please with a capital P talk to your health care team tomorrow. Let them know what is going on. Most people do not realize that they are doing themselves a disservice during chemo by keeping a stiff upper lip. Your team has to know what the side effects are. If they lose someone to infection or a blood clot from inactivity due to fatigue it defeats the purpose now doesn't it?
There are things that can be done. When I was in chemotherapy I had a social worker who kept tabs on me to make sure I was not having any practical or emotional issues that might effect my treatment. I also had a physicians assistant and could have had palliative care to help with side effects if needed. I had a dietitian who help make sure my diet supported my treatments. A support team is important to what you are trying to achieve. Some places offer them some places you have to ask.
I know that you may not wish to have others in your home but a visiting nurse service, physical therapy or even temporary hospice might really be the key to making this work better. More chemo isn't going to make him any peppier. The more eyes you have on the situation the better especially if they are experienced eyes. They may be able to suggest little things that make a big difference.
I hope that you don't feel I am being to forceful in my opinions but I am worried and know that with the right help this could be easier for you not to mention for your husband. I can feel your love and concern for him he is very lucky to have you in his corner.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
The following user(s) said Thank You: CatherineH, RDnKY