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Husband's brain cancer 
Started by Bubu
01 Feb 2015, 9:57 PM

My husband of 8 years was diagnosed 3 years ago with brain cancer at the age of 49. We were told the biopsy and pathology showed grade 2 (relatively benign) but that the behavior of the tumor was more aggressive (grade 3 or 4). He underwent surgery, radiation and chemo. The tumor is in the speech area, and his speech has been affected to a large extent--though it is difficult to tell if it is because of the tumor or radiation. Doctors have told us the MRI looks "stable" but clinically, I am finding that his word-finding ability is very compromised. He also has comprehension issues. He is up and about and is working with wood (his passion), but his ability to converse and remember things has been affected. I have done my best to work with a grief counselor to internalize what is going on, to intellectually prepare myself for what is to come. Seeing him diminished physically and cognitively is extremely difficult. I feel he is a different person in many ways. He used to be strong, invincible, nickname "Superman," took care of everyone else's needs. Now he seems vulnerable. I am having a hard time accepting that, and accepting my own vulnerability. 
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Reply by NatR
01 Feb 2015, 10:55 PM

Dear bubu,

welcome to the forum:). Glad you joined the group and I am sure you will discover an understanding and caring bunch of people.

i am sure it must be a difficult thing to watch your husband change so drastically in front of you.
what kind of support do you have... .? Are you the full time careguver at home?  If so you may already have some kind of respite or home care support coming to assist you.  If not it might be something you want to consider?

not knowing you or your husband, it's hard to say what kind of assistance you may need, but it feels to me like it may be time to think about the possibility of some outside help.

i am sure that the changing nature of your husbands health and therefore the changes to his personality and his perception must be very hard to take.

as a group we are here to listen and offer support, allowing you to share and hopefully also get ideas on coping.  You are on a new and unfamiliar path...it's a difficult time, but every difficulty is made more bearable by the comfort of friends who have had to take a similar side road...one that doesn't have many sign posts about how far ahead is the next hurdle, the next challenge  the next fork in the road.

i hope you will feel the group hug that awaits you as one by one responses are made to you.
sending you  warm thoughts from a very cold wintry northern Ontario. 
Sincerely,
natR  
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Reply by KathCull_admin
02 Feb 2015, 4:12 PM

Dear Bubu
Like natR, I welcome you to our community.

I think you have been very wise to 'anticipate' what is to come and prepare intellectually by seeking professional help.  It's so hard to prepare emotionally - because you are preparing for what is often unknown.  

Since your husband is no longer able to carry the role of 'Superman' (which must be difficult for him too) have you needed to take on more of those tasks?  Keeping the home running, caring for him and others who may be in your family/friend circle, trying to be optimistic, arranging appointments - almost  like a 'Superwoman'.  One of our members, Oldbat, started a thread that talks about some of those roles on The Long Haul .


Can you tell me more about other family/friends who support you?


Katherine 

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Reply by Angie6
02 Feb 2015, 6:16 PM

Bubu, you need to do self care once a day
Just do something that makes you happy. You also need help, even a break from chores. 

Hug yourself! Love yourself too! Get people to hug you. 

My advice from experience . It's pure hell helping a partner . I empathize. 

 
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Reply by jorola
04 Feb 2015, 8:17 PM

Hi bubu,

I am sorry you and your husband are going through this. My first husband had a stoke at age 24 and then had similar symptoms to your husband. He had word finding problems, poor memory, comprehension problems and worst of all became very selfish and mean. He was not the man I married. We were very young and our friends disappeared quickly as they were unable to handle the change in their friend. I struggled for a long time on my own to only realize i could not keep doing that. I sought professional help and finally confided in a couple of friends. It took time but i got stronger, I got help where I needed it and I was able to cope.

Your husband is in a tough battle and you are in the trench with him. Sometimes you feel like you are drowning. I can't tell you what to do only what i did to help myself and to tell you I really do understand. My new husband has lung cancer and I find myself back in a caregiving role although less so as he doing much better than anticipated.  I will tell you to seek help where you can and do not feel bad about it. That what the services are there for. Talk to us. We are here to listen, send support and encouragement and yes cry with you too.

I am thinking of you.

Jodie 
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Reply by JennJilks
08 Feb 2015, 7:52 PM

Dear Bubu,
Welcome. Deep breath.

There are many amateurs and professionals out there who will help you, including people associated with Virtual Hospice! In addition, most communities have volunteers, like myself, who will provide you with respite, support, help you getting to appointments, etc. Just ask. I have driven people to appointments, sat with clients while family did chores, taken notes an medical appointments, held the hand of a client in a coma, while her daughter went and had her hair done. I cannot tell you how rewarding it is for people like me to do this for poeple in your position.

The cancer society will provide you with information if you need it, want it, as well as the pros on this website. Also the Brain Tumour Foundation has amazing resources.  They will send you a kit if you do not already have one.

My late father, who had a brain tumour, had a large booklet with much information. I'm sure you've been given it. He didn't understand it. My late mother didn't read it. There you go! I wanted info.

My late father's brain tumour was in the area of language, as well.  Dad couldn't draw up nouns. Then it became orse.

You can do it. You will get through this. One day at a time. 
There are a lot of biographies out there that helped me. You may just want to escape with fiction!!
Here is my book review list, just in case you are looking! 
Live in the present moment. This has helped me. Prepare, financially, emotionally, etc., but when that "What If" train enters the room, let it go. Banish your fears. Just live.
Do what you have to do.
My husband has prostate cancer. We have a cololonscopy Tuesday, which will be appointment #33 for us. The worst time for me was emptying his catheter bag after surgery. (The surgery didn't get all the cancer cells.)
That is my two cents worth. As Jodie wrote, this is what helped me.
 Keep a diary. I forgot that! It helps. Journalling here helps, too!
Many hugs.
Take care. 
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Reply by Bubu
08 Feb 2015, 9:40 PM

Thank you everyone! I just read your messages (I am still figuring out the technology of virtual hospice) and I was moved to tears. Really. Such a  relief reading your words of support. Your emotional support comes through in every word of your messages. Jorola, your reference to "friends disappearing quickly" after your husband's stroke resonated with me. This has been one of the toughest aspects of being a caregiver. My husband's family (siblings) is totally unable to be there for him--neither emotionally nor otherwise. They show absolutely no emotion and don't ask about him, even though we are from (and currently live in) Jordan, where extended families are normally very connected. Also, some of our closest friends have not handled this well either. They unintentionally say all the wrong things. One of the couples we are friends with saw my husband struggling to cross the street on a weekend (struggling because of his physical condition and because we have use-unfriendly streets), and they never stopped to ask if he needed help. They did not even call me. They mentioned it non-challantly over dinner a few days later. And the words they used to describe him (words in our language that indicate he was helpless and vulnerable) were so hurtful. I felt so hurt. It just added to my feeling of isolation. Having said all that, I must note (in response to Katherine's question) that my own family (two sisters, one brother and my dad) have been phenomenal in their support to both of us. We now have a live-in housekeeper, which helps a lot because I can go to my part-time job and know that my husband is not alone when he is at home. Katherine, thanks for pointing me to The Long Haul. I will take a look now. 

Angie6, I agree. I now realize how important self care is. I have decided to give myself a couple of weeks off every several months. Next week, I hope to go to the beach for the weekend. The sun does wonders. Fortunately, my husband has a couple of wonderful friends who always ask about him and with whom he can bond. As the saying goes, "Friends are God's way of apologizing for family." They have been like brothers to him, often spending quality time with him and allowing me to take a breather. They provide him with emotional support, and I have found that to be very useful because it takes a huge burden off me. One of the most difficult challenges has been the balance between being the caregiver and the wife. The first two years the caregiver role completely took over. I felt like the nurse all the time. Since he stopped chemo, radiation and other treatment (because he is now stable), things have gotten easier. I have been able to get back into the role of loving wife as opposed to the nurse that reminds him of medicine time!

Thank you all for your very kind and supportive message. It does help a lot to feel there are others dealing with similar issues. I hope I will be able to reciporcate and be of support as well. JenJilks, thanks for the book review list. NatR, I love your reference to the road that doesn't have many posts as to how far the next hurdle, challenge or fork lie. Spot on analogy!  

Thank you for the group hug. Sending you love & warmth from the Middle East.  
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Reply by Bubu
08 Feb 2015, 9:43 PM

Jorola, I am glad your husband is doing better than anticipated with the lung cancer. Good luck!
 
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Reply by NatR
09 Feb 2015, 3:03 PM

Dear Bubu,

thanks for for the update. Glad to hear  you are taking care of you and that you have some support enabling you to get out of the house.

Keep strong, keep looking after you as well as your husband.
write when you can, 
best wishes,
NatR 
 
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Reply by KathCull_admin
12 Feb 2015, 2:27 PM

Hello Bubu
I am not sure if you are at the beach now or in the midst of planning to go. Here in the middle of Canada - we are planning to go to the beach - in about 4 months:)

Words are so powerful - I am not sure if you used the adage, "Sticks and stones will break my bones but words will never hurt me." To me it is so false - words can cut but as you have found here they can also heal.

Thinking about relationships and responses, last year Lindsaymarie started the thread Failing Friendships A number of people, posted with thoughts and suggestions. 

Please let us know how your time at the beach is - hope it brings rest and refreshment to you.

Katherine 
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