Yes there is a we but when my husband was delirious for over a month it felt like there was only me as he could not contribute to his health care and I felt overwhelmed. That is about as close as I can get to what you live with everyday.
I was responding to what you said "Lately I find myself not giving as much thought to my bladder cancer as I used to or think I should." and then you asked if anyone recovered from a period like this. Given that living with bladder cancer is a lifetime necessity we need to find ways of coping so we can keep going. We traveled full time for 10 1/2 years and then boom we are here and have not gone anywhere in a year except to Doctor offices and grocery stores. I have to find small things to renew the spirt as we can't afford to do a lot of things we used to enjoy. Sometimes getting through a period of burn out is just to fake it.
As for coworkers or others who keep asking it is difficult to know what to share sometimes I'm afraid I'm giving Too Much Information and other times I just don't want to share. I think perhaps the best response is to say "I can't talk about it now I have to focus on what I'm doing."
Venting is important as sometimes it is the only relief. I hope some of your other medical issues are temporary. Julie
Thanks for your reply. Perhaps I didn't make myself really clear in my post, though. I don't dwell on my illnesses. I have 12 different medical conditions, some limiting, that require my constant action, vigilance, decision-making, appointments/procedures, and routines, and there is not a way to get around that unless I ignore them and let them get worse, which I really don't want to do. Actually, I have let some of it go unattended because I can't keep up.
I think about bladder cancer as much as I have to in order to make intelligent decisions about my treatment. With the conflicting opinions and advice I've had, that meant a lot of research so that I could ask questions that needed to be asked. Also, it's not always in my control to leave the topic behind for awhile. I may be busy at my job when a coworker comes up and starts grilling me about my treatments. At Christmas time I asked my visiting relatives about their jobs and their hobbies, but all they asked me about was my cancer. I have explained to people that I don't want to talk about it all the time, that I am capable of talking about other things, but it doesn't seem to sink in. I know they are just showing their concern, or their curiosity, but it does bring it to the forefront in my mind each time.
There is no "we" in my situation, as there is in yours, there is only "me." No one is there to help me make a list, remember things, or give me the hug I need at the moment I need it to keep going.
I can do deep breathing when I feel really stressed, but most of the time I don't feel stressed and it doesn't help how I do feel. Like I said, it's a weariness. I'm not at all a sedentary person by nature, but an active and social one. The activities I enjoy and am passionate about (traveling, tennis, hiking, dancing, bike riding, some volunteer work I used to do) are now beyond my physical capabilities and/or financial capabilities. Friends have left me in the dust as they continue to pursue these things. Nowadays I play with my cat and read library books in what spare time I have. It doesn't exactly revive me. I also correspond on this site, but am only a junior member so am obviously not making this my focus.
Venting helps, so every once in a while I indulge myself.
Connie, how much time do you think is appropriate to think about Bladder Cancer? It is probably not a good idea to think about it 24/7 or even 10 hours a day. Pick an amount of time say an hour a day and the rest of the time get about the business of living. Dwelling on illnesses can lead to despair and a self pity pit. Bladder cancer is a fact in our lives and the only choice we have is our attitude. I'm sure you would rather be relatively neutral than burnt out.
We have been there I still have unopened letters from insurance, the billing office of the hospital and medicare. We had to make a computer print out of all the medications my husband is on plus a list of his conditions and a list of the procedures he has had so we can hand it to the medical personnel instead of trying to recall it all during a visit. I still have to add a list of his Doctors.
Even though I am a relatively sedentary person I don't do well at meditation. What I do find useful is to do deep breathing for a few minutes when I feel stressed. The deep breathing brings on the relaxation response in the brain and helps a person to feel less stressed.
Do something you enjoy. For me it would be birding. I don't know what your interests are but take the time to engage in pleasurable activities and let the cancer take a back seat.
I feel very sure that you are right and that you are feeling trapped because of finances. You also know that I empathize with you on a very fundamental level. I had to give up living in my historic home, donate my furniture to Salvation Army and find a home for my cat (who soon after passed away...guilt...guilt) so that I could move in with my elderly Mother for her to provide me with a financial cushion over medical bills.
Having been and also being there myself, I do hope that you find some relief and respite over financial difficulties so that you feel that you have some control over your life. It does take money. Believe me, I know.
Also, you are right. Sometimes all you can do is hang on by the nails and then keep on hanging on.
Hang tough. We are in it together.
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
Thanks to all who replied and gave me your different perspectives.
The burnout/imminent shutdown probably is not a matter of depression, since I would be doing many things that bring me joy if I had the money and physical capability. It may be somewhat a matter of stress, though I think it's moreso weariness with the many health and other problems that have been getting steadily worse the past 10 years, and knowing there is no respite except death.
Meditation is great, gcurt, you're right. I did try a class in it, but kept missing sessions due to other responsibilities and sometimes being too exhausted to get there. I try meditation at home, but I need to do neck traction and PT exercises frequently, and those tend to eat up the time I need. I'm one of those to whom meditation definitely doesn't come naturally either; I get very restless. Also, I spend so much time alone that one more solitary activity is difficult for me -- I'd much rather be communicating with someone, but I do try to practice meditation on occasion.
One helpful thing I've found is a CD by Belleruth Naparstek called Health Journeys for People With Cancer. An acquaintance gave me a copy of it. It includes creative visualization for healing and affirmations. Now, if I could only remember to get out and buy more batteries for my portable CD player, I would listen to it again...
I feel like a hamster on a treadmill, running, running, getting nowhere... but when I stop, I've learned from hard experience that it gets even worse, so I keep on going. Though I have to disagree with whoever said "Whatever doesn't kill you makes you stronger." I feel pretty weak right now.
I'm learning to spend some time each day practicing some form of meditation.
This isn't something that comes naturally to me, but with some patience and practice it does provide relief from stress and worry. Breathing exercises while listening to music you enjoy is a grat way to start.
Dx: CIS 12/07
Happiness is not a station you arrive at, but a manner of traveling.