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SUGERY THURSDAY gbm tumor

evon
Posts: 24
Joined: Jan 2011

My fiance Dinos surgery is this Thursday,Sooooooooooo nervous!Its in his left frontal lobe,They say his speech could be effected because of its location.We live in Chicago burbs and are having a blizzard right now.What can I expect after his surgery?Pain?How can I help him better?Chemo and radiation to follow in 3 weeks........

Beckymarie
Posts: 358
Joined: Aug 2009

All you can do is take it a step at a time. There is a clinical trial where a vacine is made from the surgically removed tumor. Is he eligible to participate in this trial? I know this is a stressful time but can only take it one day at a time.

PinkLava
Posts: 1
Joined: Feb 2011

Before the surgery, try to get busy with things that are not related to the surgery. 4 hours before my surgery, i was given a laptop to watch a new movie that just came out. I didn't get to finish it but i was so into it. I was 16 when i was first diagnosed.

After the surgery, while in the recovery room, let them make sure that he is not allergic to anything. I turned out to be allergic to anesthesia so i stopped breathing.
He will feel very tired although he was sleeping for the 6 hours of surgery. After he wakes up, yes, his speech might be slower and have some tingling in fingers/arm and toes or no blood my be circulating those parts. For speech, make him talk even tho you wont be understand what he says. I got frustrated because the right words never came out. for the muscles, always try to work them out on the daily basis. using a hot pad and massaging the area helped.

Chemo- depending on the medication he is using, hair might end up falling right away. During the chemo, not much was felt. but after chemo, like the if its done at night, the next morning he will feel horrible. He most likely will throw up, lose appetite and just hate himself. I had bad taste, like i ate chalk. His taste in food might change for then next year. Watch him all the time, because you want to be aware if he gets an allergic reaction for a certain drug or if he has a seizure (mostly in the first chemo).

radiation-- after the first week, the skin will feel like it got sun burnt real badly. but while having radiation, there is no pain. after 2 weeks, the skin will feel very sensitive and really burnt and red. Applying Aloe every day almost 3x a day will help. it is a mess, but it was worth it.

Always keep him busy, with movies, books, games, whatever it is. When i was bored, all i thought about was "why is it me that has a brain tumor?"

I hope this helps.

tommybear
Posts: 112
Joined: Oct 2009

I had surgery a week ago Monday on my temporal lobe - second brain surgery! My speech is slightly affected, but it is actually kind of funny. I hope your fiance can be feeling as well as me - I only have slight pain still. I get tired, but other than that I am doing well.

I will be thinking about you and your fiance...wishing you the best.....

Take care,

Michele S.

Taf
Posts: 4
Joined: Jan 2011

I'm in a very similar situation to you, but seem to be a few weeks ahead.

My Fiance had surgery for a GBM in his Occipital Lobe on 23/12/10. We were also having really bad snow storms at the time and travelling back and for the Hospital was a nightmare.

He came home on 24/12. Although I do think that was too early, because he was pretty ill on Xmas day. He is doing really well. He had very little pain, the only problem he gets is sudden extreme tiredness and loss of left field vision, although his vision was like that prior to the op. His chemo and radiotherapy is due to start next week.

As for helping him, physically, he doesn't need a great deal of support, just understanding of his limitations in respect of fatigue. Mentally is a different matter! I'm not sure what the doctors are like in the US, but in the UK, they don't hold any punches, they give the worse case senarios.

He's being a typical man about it and putting on a brave face, but he is very down and of course, so am I, but I just have to keep my emotions in check, for his sake, which is pretty difficult.

All I can advise is just to be there for him and if possible, get some emotional support for yourself as well as this will help you, help him.

If you need any more advice, let me know. Good luck to you both.

evon
Posts: 24
Joined: Jan 2011

They were able to remove up to 75% of the tumor!BUT,his right side has almost no use whatso ever.His speach is greatly affected and the mood swings are out of control.He refused to stay in rehab and is now home.Im exhausted!

MAJW
Posts: 2515
Joined: May 2009

Most insurance will cover in home rehab for a certain amount of time. Worth looking into..if your exhausted, think how he must feel.
Wishing you both better days

Beckymarie
Posts: 358
Joined: Aug 2009

I was the caregiver for my husband for 15 months after he was diagnosed with a stage 4 GBM. It is exhausting. Can you get some help...his family, your family, friends, neighbors. There is a website Lotsa Helping Hands. A friend set his up for us and it was very helpful. People can sign on, they become your community. Your needs are posted, it can be having meals prepared, help driving to appts., yard work etc. People in your "community" can then sign up for various tasks. Do not be afraid to ask for help or take it when offered.

evon
Posts: 24
Joined: Jan 2011

Thanks Beckymarie,Ill check into that site.He wks very hard at therapy,In so proud of him!We knew weakness in the right side was a risk but not this!One of the nurses reccomended Pallative Care,Gonna look into that too.Friends do help but he gets down people seeing him like this.I wish there was more I could do to make him feel better.Chemo and radiation begin tomorrow...

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