Struggling with a partners anaplastic oligodendroglioma diagnosis?

Struggling Girlfriend

Hello,

I am 27 years old and my partner is 29 years old. We have only been together a year but we fell head over heels in love the day we met and have been inseparable since.

3 months ago he had 2 nocturnal seizures whilst in bed with me and as time unfolded it became apparent it was a tumor. He had a partial resection, they could remove only 50% of it as it is was very large and had invaded inoperable parts of the brain. The results showed that he had a grade 3 oligondendroglioma.

I have stuck by his side over the last 3 months, taken endless time off work, been to every appointment and spent every night with him and his family.

What I am now feeling is an overwhelming sense of fear about the life that lies ahead. They have given no prognosis beyond it is unlikely he will live more than 10 years. It terrifies me as it certainly not the way I imagined meeting the man of my dreams to be, and it doesn't offer the stability I had hoped for. He won't be able to support me and children as he likely will be off work a lot himself? I'll need to be mother, father, carer and breadwinner. I feel like my life as I know it has collapsed.

I just want to hear from someone who has been through it, how hard it actually is? Whether you get used to it? and how worthwhile it is? Or do you just resign yourself to a life of pain and angst for the love that you feel?

I would really appreciate your response?

Thanks

Beckymarie

Partner's Diagnosis
I read your posting with great interest. My husband was diagnosed with a GBMIV in 2009 and passed away in June of 2010. Our life took a drastic change in every way. As you said life as we knew it was gone. There were days that I was not sure I was going to be able to continue being the strong one, the breadwinner...the everything. We were married for 32 years and I was prepared to take care of him for as long as it took. You are in a very different position. I would suggest you seek out counseling. It would help you to talk to someone who is unbiased. This is a very difficult road to travel. I wish you luck with your journey. Will keep you and your partner in my thoughts.
Becky

kathl29

I am in the same boat
My husband is 36 and last year was diagnosed with an oligondendroglima. I was pregnant with our second child at the time of his collapse and diagnosis. We have just reached the 12 month mark.

Like you I was very scared for the future when my husband was first diagnosed as we too were not given any real time frame. It is a very big thing to come to terms with both for the patient and for the carer/family.

I still have days where I fear for the future because of concerns about how I will pay our mortgage, will I be able to look after him when he gets really sick etc. Like you as the carer I have also had to make huge changes to my life - I have had to give up full time work and so we are now living on benefits, (I am in Australia). Due to his seizure risk he cannot be alone with our baby so if I need to go somewhere I have to take our son or find someone to come around and visit which has limited my ability to go out.

The initial fear of the diagnosis does get easier with time. I am not as terrified as I was 12 months ago. I still get very anxious around the time of the 3 monthly MRI scans though which I don't think ever really goes.

One thing that helped me to come to terms with the future was to get our paperwork in order so that if anything did happen quickly everything was in place. We have made sure our wills are up to date, an enduring power of attorney etc was completed, most bills were transferred into my name. I am calmer knowing that hopefully I won't need any of this stuff for a few years but it is done for when the time comes.

Is it worthwhile? I don't know - all I know is that he is my husband and I could not leave him so I just have to get on with it. There are days it is very hard work - my husband's tumour is located in his speech and emotional areas so when he is stressed he can get very angry and irrational but I am learning to recognise the triggers.

The one thing I would suggest you do is to get yourself some counselling to help you come to terms with what is going on, also your partner if he hasn't already been referred. There will be times you will need to vent and say to someone that he is driving you nuts that week. People don't understand unless they are living this situation what it is really like - even family who aren't there everyday don't fully understand. I have also found that unfortunately as the carer your needs can be forgotten - when we see people my husband is asked how he is, we are asked how the kids are and very occasionally someone may ask me how I am. Having some counselling/support for you is vital to help you feel like you are still important.

Sorry this is so long but your story resonated with me as I am going through the same thing only I am 12 months further through.

coyoteblue

kathl29 said:

I am in the same boat
My husband is 36 and last year was diagnosed with an oligondendroglima. I was pregnant with our second child at the time of his collapse and diagnosis. We have just reached the 12 month mark.

Like you I was very scared for the future when my husband was first diagnosed as we too were not given any real time frame. It is a very big thing to come to terms with both for the patient and for the carer/family.

I still have days where I fear for the future because of concerns about how I will pay our mortgage, will I be able to look after him when he gets really sick etc. Like you as the carer I have also had to make huge changes to my life - I have had to give up full time work and so we are now living on benefits, (I am in Australia). Due to his seizure risk he cannot be alone with our baby so if I need to go somewhere I have to take our son or find someone to come around and visit which has limited my ability to go out.

The initial fear of the diagnosis does get easier with time. I am not as terrified as I was 12 months ago. I still get very anxious around the time of the 3 monthly MRI scans though which I don't think ever really goes.

One thing that helped me to come to terms with the future was to get our paperwork in order so that if anything did happen quickly everything was in place. We have made sure our wills are up to date, an enduring power of attorney etc was completed, most bills were transferred into my name. I am calmer knowing that hopefully I won't need any of this stuff for a few years but it is done for when the time comes.

Is it worthwhile? I don't know - all I know is that he is my husband and I could not leave him so I just have to get on with it. There are days it is very hard work - my husband's tumour is located in his speech and emotional areas so when he is stressed he can get very angry and irrational but I am learning to recognise the triggers.

The one thing I would suggest you do is to get yourself some counselling to help you come to terms with what is going on, also your partner if he hasn't already been referred. There will be times you will need to vent and say to someone that he is driving you nuts that week. People don't understand unless they are living this situation what it is really like - even family who aren't there everyday don't fully understand. I have also found that unfortunately as the carer your needs can be forgotten - when we see people my husband is asked how he is, we are asked how the kids are and very occasionally someone may ask me how I am. Having some counselling/support for you is vital to help you feel like you are still important.

Sorry this is so long but your story resonated with me as I am going through the same thing only I am 12 months further through.

Similar but different
Just wanted to share where I am with my sweetie's brain tumor. It is a very similar, but very different story as yours. My sweetie was diagnosed with an oligodendroglioma after having a grand mal seizure during the night (he woke me up). This occurred in 2009, I was five months pregnant with our second child. Last year the tumor 'progressed' to a stage III tumor
He has had a partial resection as the tumor cannot be fully removed (it is rather large, takes up almost his entire temporal lobe). He did 18 cycles of temodar in 2009-2010 and 6 weeks of aggressive radiation in 2011. The tumor does have the 1p19q deletions however, the temodar was not effective. The radiation seems to be effective.
I will just say it is a CRAZY roller coaster ride! I have had a lot of compassion and appreciation for my sweetie (and frustration and anger toward the situation we are in.. and yes, sometimes toward my sweetie). This is NOT how I envisioned raising our children or living our lives together. I have also realized that taking care of myself, well, it is a challenge!
That said, take care of yourself!
Be prepared for the unexpected.
We have not asked for a time line, although (on a graph) stats show survival to be a bell shaped curve, and knowing this... well, hoping for the far end of the curve!
So what does it mean?
Three years later, my sweetie is no longer working (by choice), AND he is home with the kids, functioning almost normally!! This journey is far from done (I hope) and it continues to stretch my spirit in multiple directions, but I appreciate him more and time seems to be more potent and precious... realizing that life is short, well, we kinda got hit on the head with that one!
Hope and strength in your own journey!