How to give purpose to the day?

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How to give purpose to the day?

by Janetlynn on Thu Dec 28, 2017 11:38 PM

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My husband is in year two of a diagnosis and treatment of a nonoperative brain tumor. He has been on Avastin for a year and they just added a chemo pill on top of that since they found a new growth. I have seen his symptom slowly develope....less ability to work on the computer, less push to do things...his right side is compromised due to placement of tumor....and his days just seem ....lacking. He gets up. Stretches, if it’s summer he will do some limited chores outside, we take the dogs for walks, he likes to do the bills...willl meet a friend for lunch once in a while...but I can’t seem to get him to get involved in something more. When I bring up volunteering he says he doesn’t want to commit in case he doesn’t feel well, or it’s one of his Avastin weeks. Anyone have any suggestions on what hints he could do? I just think if he was giving back or involved with something he would feel better mentally. Thanks.

RE: How to give purpose to the day?

by Madeline_Ruth on Sun Dec 31, 2017 05:31 PM

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On Dec 28, 2017 11:38 PM Janetlynn wrote:

My husband is in year two of a diagnosis and treatment of a nonoperative brain tumor. He has been on Avastin for a year and they just added a chemo pill on top of that since they found a new growth. I have seen his symptom slowly develope....less ability to work on the computer, less push to do things...his right side is compromised due to placement of tumor....and his days just seem ....lacking. He gets up. Stretches, if it’s summer he will do some limited chores outside, we take the dogs for walks, he likes to do the bills...willl meet a friend for lunch once in a while...but I can’t seem to get him to get involved in something more. When I bring up volunteering he says he doesn’t want to commit in case he doesn’t feel well, or it’s one of his Avastin weeks. Anyone have any suggestions on what hints he could do? I just think if he was giving back or involved with something he would feel better mentally. Thanks.

It seems to me that he is doing more than most patients can even hope to do with a GBM. Actually, I am amazed and in much admiration that he is still able to do so much after one year of living with a brain tumor. It sounds like he is doing what he wants to do and what he can do, and that he knows his limits. I would certainly not push him to do more. This may not be the time in his life that he feels he can "give back", as he may have done in the past. This is most likely a time where he appreciates the fact each day that he can get up and walk, and he uses his days to reflect, think and pray, which is very important with this illness. If his symptoms are gradually worsening, then these will worsen with time. No need to pressure him to do more or for others when it may be all he can do to get through each day himself.

RE: How to give purpose to the day?

by Mack1994 on Thu Jan 04, 2018 04:14 PM

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I do not have GBM, I was diagnosed with oligodedroglioma in 1994, I have undergone four resections and was on temodar for 12 cycles in 2002. In December of 2016 I had an MRI that showed tumor growth and underwent my fourth resection. Pathology shwed it is now a grade 3 ologodemdroglioma and I went through six weeks of radiation therapy and am now in my thrid cycle of PCV, I feel like crap most of the time and for me there is the crux of the issue, I do not look badI've always hd a thick full head of hair, my hair has thinned just a bit, I eat well and have been able to maintain my weight I've always made the effort to keep up my grooming. To those that know I have cancer I llok good, but my appearance does not reflect how I feel. Many people think because I do not look like their preconceived idea of a cancer patient ie: bald, profound weight loss, sickly looking, that i am capable of more than I actully am, this morning I went out to shovel snow and became fatigued within 20 minutes, I knew this but I do what I can. Each day I set a goal for myself to accomplish something, it may be something very small and seemingly insignficant but for me I've accomplished at least something for the day, today it was 20 minutes of shoveling, I will use the computer, read a book and perhaphs do a load of laundry, eat and take a nap. 

There is no small amount of depressionr with this illness, I've been on antidepressants before and refuse to do so again, I've survived long enough to make retirement, I appreciate each day but it is very difficult knowing I am living with a disease that most likely will result in my death, your husband may be experiencing similar feeligs, Iam not unhappy, but Im certainly not full of joy and energy Iam living each day as best I can.

RE: How to give purpose to the day?

by Janetlynn on Thu Jan 04, 2018 06:23 PM

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Thank you for sharing your experience.  I think you are corrrect on so many things you have said.  And personal daily goals that you set are great, it doesn't matter that they are only 20 minutes, it's something to make you feel as though you are accomplishing something.  My husband is still grappling with the loss of what he use to be able to accomplish, while that is understandable, some how I'd love to see him try to move past that so you can at least acknowledge what he can do and get something out of that.

Good luck and again thank you.

Janet

RE: How to give purpose to the day?

by weAre1 on Sun Jan 14, 2018 09:31 AM

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I work every weekend, so I try to have family members do something with him, tonight he went to a cancer telathon and dinner with his sister and brother in law.  We are a blended family, 2nd marriage and combined have 5 daughter!!  So usually someone is available to take him out to eat, for a walk, a drive or anything.  Sometimes we just take him to the mall for a virtual reality experience, a movie or out to eat.  His cousins like inviting him over for supper and he's learning to play the guitar:) I don't like him to drive so he gets picked up, we live in Minnesota so out winters are brutal and we need to be creative to get him out and about because he's content sitting home watching movies.  Best wishes.  Dawn

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