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GBM Grade IV and going back to work?

tammymccracken
Posts: 4
Joined: Feb 2011

My husband David (46) is a federal employee and a US Army Reservist. Diagnosed in October 2010, he has not been back to work until recently (both with the US Army Reserves and his federal job).

Since the diagnosis, David has had such a hard time keeping track of time, his things, events, etc... mainly short term memory items. I fear for him when he goes to work and think that it has to be a true testiment of strength for him to overcome his fears and go into a workplace where he can't remember much of what he used to do and the routines that are accomplished there. I truly admire him for wanting to go back and I believe it gives him a sense of relevancy.

We have three kids and I know they are proud of him as well... my question is how many of you are faced with the decision of going back to work or going on disability or retirement?

We are just so unsure of what to do... I should say, I am unsure of what to do... I feel like I am managing everyone else's lives but my own sometimes.

Thanks for your input!

Beckymarie
Posts: 358
Joined: Aug 2009

It is astounding how much the spouse's life becomes managing cancer. It is often overwhelming and exhausting. My husband was diagnosed in March 2009. He was CFO of a software company. His tumor was located in the area of the brain that was responsible for logic and figures. He really did not have a choice in whether to work or not. It was a startup company and he loved it. It broke his heart to have to resign. We did go on LTD. Unfortunately the insurance company we dealt with was very difficult. If your husband is able to do his job, do it safely and wants to work, it would probably be the best thing for him. If not, than disability is an option. Good luck and hang in there.

KMPonder's picture
KMPonder
Posts: 102
Joined: Dec 2009

Hubby's now on his third type of malignant tumor. After 22 years tumor-free, AAs were discovered in August 2009. After treatment until Dec '09, he went back to teaching elementary school in Jan '10. Worked all the while on monthly Temodar. He was fatigued big time, but he endured. More issues arose in November, in the form of a new enhancement and the onset of vision loss. He had to leave in January of this year, due to what is now total blindness and a confirmed GBM via a craniotomy. He'll be retiring this summer at the age of 45. It's quite daunting, but he has no choice. He hasn't the stamina to learn new adaptive skills to teach while blind, so we just see no other way.

He's currently undergoing chemo - 21-day cycle of Etoposide. Our first MRI post this is tomorrow morning. I'm anxious to see if it's working. Obviously, this tumor was growing all the while he was on Temodar, so I fear it's going to be resistant to chemo. We'll remain hopeful until we know.

Let him try, but assure him there's no shame in leaving work to take care of his health.

I wish you both the very best. After 1 1/2 years of essentially non-stop treatment, two malignant brain tumor diagnoses and blindness, this caregiver is pooped! :)

htmama
Posts: 6
Joined: Apr 2011

Hello
My dad was diagnosed in dec. of 2009. And he would love to work but honesty he can't do it. We have had major family discussions and battles about it. He forgets almost everything in a day, some days are better than others, but we just don't want him effecting others at work too.

I know that every situation is different but disability is a good option. We were able to get him on without too much trouble. We were worried because everyone told how hard it would be but really that has been on of the easier things to handle. There are so many things so worry about while battling cancer, getting him to work will have to be a big choice for everyone.

I really understand how you feel about not having time for yourself...try to find some. I still feel guilty at times that I am not around more, but we (I have a three year old daughter) make him tired.

I wish you happiness whatever you decide.

johngiustino
Posts: 26
Joined: Apr 2011

I had 99+% of my GBM IV tumor removed and was back at work about 2-3 weeks later. In fact, the day after my neurosurgery I was emailing work back and forth to my team from the hospital bed. The actual process of going to back to my office was different. I was fearful something medical might happen (I was still feeling fragile coming out of the hospital) and it was awkward talking to people for the first time. They look at you with a look of fear, worry, and concern in their eye, In turn, it was awkward for me - once gregarious - now I just wanted to sit at my desk, get my paperwork done, and talk as little as possible to people. I was definitely disoriented. I found for the first few months, I could not handle large meetings, so I just set up 1/1/ meetings which I found to be much easier to follow and control. After several months things are getting back to normal, for example, I am not afraid of having a big meeting, but if I am tired because of my chemo it can still be hard to follow everything. Overall, I am better there than not there for the company's sake, and I think my boss knows I am trying hard and is proud of it. So long as the boss is supportive, I would recommend getting back into the routine of work. It gives you a sense of acomplishment and usefulness you will not get sitting at home.

Best of luck,
JG

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