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Fatigue or depression?
My husband’s cancer spread to his hip bone and lymph nodes (see my previous post “Again and again, and again” for details). He had radiation treatment of the bone which has helped, but not as much as we had expected. He is getting chemo at Vanderbilt University’s Ingram Cancer Center and will have his third round of chemo on Monday and Tuesday next week.
One of the biggest problems he has had with the chemo is extreme fatigue (though the first round hit him so hard he ended up in the emergency room). He spends his days in bed or on the couch and won’t even go sit in the porch where he always used to sit and read in the past. It is so bad that I’m pretty sure he has developed bed sores on his rear end which we will have to bring to the doctor’s attention on Monday. The tthing is, I can tell by looking at him that he is doing well enough to get up and do little things. But he insists that he is too fatigued to try. When he had his kidney removed and then later when he had his bladder removed, he forced himself to walk multiple times daily. But now, nothing.
My assumption is that he is depressed and that this is why he is no longer motivated to try to move. He denies this and I could see how he might be experiencing his depression as fatigue. However, I also know that fatigue is one of the biggest symptoms with each of the chemo meds he is receiving. So, the last thing I want to do is to act as if the the fatigue is not real when I know it is. So, I guess I can’t figure out whether it is a depression based lack of motivation or is it really extreme fatigue.
Anyway, I am frustrated, worried, and now that I see bed sores – I hate to say it – I am angry with him for letting it get this far. And, then I feel guilty as heck for feeling angry.
I think I am just venting, but if anyone has advice to share, I would love to hear from you.
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11 Replies
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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… CatherineTURBT 1/21/10 at age 55
Dx: T2aN0M0 Primary Bladder Adenocarcinoma
Partial Cystectomy 2/25/10
Vanderbilt Medical Center
Nashville, TN
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.
Cynthia,
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.
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society
Hello Old Engineer,
Thanks for the ideas. Up until his hip broke from the metastasis my husband exercised daily. Our big splurge after he recovered from having his bladder removed was to buy a continuous pool (an exercise pool that has a current you swim against). He used this or our treadmill daily. So, luckily, he enjoys exercising.
Back when he had his bladder removed, he followed your strategy to a T. I actually thought that he went back to exercising too quickly, but he was so motivated to get better that he really pushed himself. But, now….. And, how do I help get him up and moving without being a nagging wife? I don’t want to turn into one of those.
I think if he would just walk across the house a couple times daily, that would help get him out of his funk.
I will say that he was better yesterday and today…just about a full two weeks after his last chemo. unfortunately, we go back for round three tomorrow morning, so we will be back to square one when we get home on Tuesday night.
RD – just a thought for you and your husband to consider; it may or may not be relevant, you be the judge of that.
I am not in the same situation as your husband so I am reluctant to even suggest this, but it has worked for me over the past nine years; I am 64; was diagnosed with coronary artery disease in 2006, and have tried to find a way to exercise consistently since then that is not boring. In other words – relevant to your husband’s situation – to walk consistently and for relatively long distances.
Here is what I did.
All of my walking is on a treadmill – thus I do not have to worry about weather, cars, dogs, uneven pavement, insects, etc. My treadmill has a platform in front of me on which I can place my laptop computer. So – I walk at a modest pace – between 2 and 2.6 miles per hour – and either surf the internet reading what is interesting to me; or do work (I am retired but now consult part time); or play video games, usually strategy games and especially those simulating World War II (one of my areas of long-standing interest).
How much walking do I get in? I have averaged over 6 miles per day over the past nine years. My personal high was 19 miles in a single day. I had to get orthotics because my feet were getting sore.
My point in all of this is just that walking by itself can be boring, as most exercises are, so I tried to link it to something I enjoyed doing – like playing video games or reading – and the miles just “melted away” as I pursued those activities.
Just a thought. I certainly wish the best to you and your husband.
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
I don’t know if you are “supposed” to have a social worker, but many practices have access to them. The can be a great help in cases such as yours.
I am so glad that your husband is doing well medically!! That is great.
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator
Thanks Sara Ann for your quick reply.
Fortunately, the chemo is working. He is doing so much better than before he began treatment. The weird cancer smell is gone (I have a super sensitive nose, so I can smell when there are changes), his eyes and his color are better, he has more strength, and the pain in his hip is managed quite well. And, his blood tests and CAT scans show significant improvement. So I don’t think we are ready for hospice at this time. I really do think that if I can get him up and moving his mood will improve. And, thank goodness he has only two more rounds of chemo. So, if he (we) can keep our sights on November, when it will all be over (for now at least) perhaps it will be easier to pull through.
I am interested in your comment about our social worker. I didn’t know that we are supposed to have one. I will be sure to ask the doctor tomorrow.
I am so sorry that you and your husband are going through this. And yes, it can be just as hard on the caregiver as the patient.
You…and your husband…need to have a real conversation about the situation with his doctor. If the doctor is not able to do this, you need to find the social worker who works with him. Of course your husband is depressed….and you probably are also. You both are at the end of the emotional rope.
You need to seriously assess what the outcome will be. Is the chemo retarding the growth of the cancer? Or is it prolonging a bad situation. You might want to inquire about palliative care or hospice. They have a lot to offer and people DO leave their care and get better.
The doctor should have suggestions for you both to help this situation.
Wishing all the best for you both
Sara Anne
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
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