Lelekbolek's Cancer Blog

Brain cancer caregiver, asking for any help

Hi everyone. 

My husband was diagnosed way back in 2008 with astrocytoma and glioma of the brain, in the speech center. He was operated (partial removal was possible). Then in 2012 he had a 9 month long chemo treatment. In 2015 he was enrolled in an experimental drug treatment study, but later his doctors recommended to start radiation and chemo combination. So... on Sept 6 of this year he finished radiation/chemo treatments. He is to continue on Temodar now, for 6 cycles, and finished his first set of pills a couple of days ago.

While undergoing radiation treatments, things were more or less ok. But right now, he is at his worse. His fatigue and overall weakness are terrible, he is hardly eating, constantly cold (not eating like that isn't helping), has troubles with speaking, memory, and I fear depression. He is scared and frustrated, and I must look like I am not also scared out of my wits.  We have two small kids, 4 and 7 years old, and I am the only one to keep everything going, besides occasionally my mother in law comes. No family near, and you maybe know how some "friends" can be, when you are in need - they dissapear. I am losing my mind here. Yesterday, he wanted to take a shower, and that ended in a fit of hypothermia. He came out of the shower (which wasn't cold) shaking so bad he couldn't grab a towel, his lips and hands were blue, and overall freaking out was obvious. I treated the situation fast and effiicient, luckily I was there and wrapped him in everything dry I could get my hands on, including his hat (hair fell out, of course), put him in bed with blankets, and shared my body heat to warm him up quickly. But it scared me so much. 

Does anyone know of such side effects lasting this long, and how to make him better for now? I mean, what should I be expecting? What else should I be doing? He is now in his 23-day break between chemo. 

Becky, Kristy sent you a prayer.
Becky sent you a hug.
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Hi. Sure sounds like side effects, severe. I think if he was that cold, it justifies an ambulance call. I was very sick with SLE in my 20-30's and I know about that kind of "cold"; I had a space heater running in the middle of summer! It actually hurts, like someone pressing on a bruise. Yes, ER visit and if you can't handle it alone, call ambulance. The children will be ok. The instinct is to shelter them from anything that disrupts a happy-go-lucky childhood. But the truth is, we all need to experience the sweet & sour of life to be a balanced individual. Talk to Social Services at the hospital, and/or cancer center. You need help. AND, maybe a pharmaceutical, small dose Valium or something. In the meantime, reach out like you did just now, here, it helps. And go to Target and get a space heater; Holmes is a good brand and reasonably priced. God bless.
thank you for responding. I am running the heat up for him. I am hoping with all my heart, that he will start to improve soon. Not sure how long I can hold on. I worry about taking Valium or such, I worry about not being "clear" in my head, for driving and such. Yes, kids are aware of the situation, and terribly miss having daddy "normal".
I wish I were stronger somehow, I guess, since I have no one to turn to really.
Marcia likes this comment
I see you've both been dealing with ca since 2011? You are stronger than you think. But that's a long time to deal and now you need help. I was the same way about pharmaceuticals; put off taking them for years. But I finally broke down and accepted a Valium script from my md in my late 40's. There are other rx's. I'm not suggesting that "doped up" is the way to deal, but you DO need something to take the edge off or your own immune system will weaken. Talk to your MD, please. And in the meantime, Hallowe'en is on Monday. Celebrate it! Try to live as normal as possible because after all, I'm sorry to say, I think CA is the new normal. And we deserve to have fun just like other people!
Lelekbolek likes this comment
he had a seizure, and tumor was discovered on Valentines Day of 2008. That was an ordeal that started my panic attacks. I recovered from those, but fear they may be returning from sheer stress right now.
Thank you for your suggestion, I may actually need something. I don't know. Such a confusing and frustrating time.
Marcia likes this comment
My heart is hurting for you. This terrible disease is so hard on the whole family, not just the member afflicted with it. Couple of practical prices of advise:
See if your insurance willl cover a home health nurse (mine would, I didn't find out until after treatment was over and I had drug myself to the hospital for hydration several times -- oh how I wish I had a nurse come to me)
There is a charity that cleans for people going through treatment ... call them, get that off your plate so you can focus on you, him and the kids
Contact a local church and see if they have a cancer support group ... maybe someone who can come sit with him so you can have some you time -- you won't be able to take care of him if you don't have a chance to recharge your batteries.
ASK your friends for help -- so often they want to help but don't know what to do. Maybe reach out to one and ask if she can organize meals for your family. I am so bad at this and didn't ask for help from my friends. I have had several soul searching conversations with my best friend, I express my regret for not asking, she told me there were several time where she just wanted to come lay in bed with me and hold my hand but was worried I didn't want her there ....I wish I had asked for more.
And Marcia is right, don't be afraid to involve your children. I know we want to protect them, but they are ore resilient than we think and you could be building some great memories for them .... sometimes the best memories come out of dark times.
I will keep you in my prayers. Sending you virtual hugs!!!
Lelekbolek likes this comment
Thank you so much. The kids are up there with him right now, trying to cheer him up before my son goes to school. I need to ask, I think, for help. I am also awful about asking to help with my problems, it seems to me that people only accept me when I am cheerful, but when I hurt - they turn away, or shrug it off considering me too strong to have a meltdown. I've asked my sister-in-law to come for a weekend, she is not very near.
Thank you for your hugs and wishes. I will look into the insurance thing!
I am praying for you! He may also have anxiety or maybe even ptsd. When my anxiety kicks up I get cold and it is a cold from within, nothing helps. Has he gone to dr. Abt this yet? I am praying for you guys as this is a very scary road. Are you religous? If you give your fears and worries to the Lord he will take them from you.
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Temodar for brain cancer - round 2

So my hubby started the new round of Temodar (second of many to come). The dosage was increased by a lot compared to last time: from 280 mg to 370 mg. He took it yesterday - first day of the cycle. We follow the directions presicely - 5 days taking, 23 days - rest, 2 blood tests on cycle days 19 and 26. Dinner, then at least 2 hours of no food, then the anti-nausea pill, then 30 minutes after - Temodar, then off to bed not late after. From previous time we learned that side-effects "accumulate" over days, so first day after taking it is much better than the last, and then he feels kind of bad for 2-3 more days. This morning (after taking a dose last night)he got up to run - as he does every morning. He said he feels better this first day, than a month ago after the very first dose. I hope he does well! We now plan all our activities accordingly - to allow for about 10 days each month for chemo and recovery. But life does not stop! We had a fabulous weekend - hiked the mountains one day, and had friends with kids over for pool, cook-out, and margaritas (those - just for adults, naturally :-)) the next day. Someone has recently complained in our presence about birthdays rolling in, years piling up, and turning "old". Hubby said: hey, the way I see it - the bigger my number of years is turning, the happier I am :-) It's all in perspective.
Becky likes this post.
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Good to hear that life does not stop. It is tough sometimes when dealing with everything that comes with cancer but we can't let it take everything away from us. Stay strong for your husband like you are and I will be sending positive vibes your families way.
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Vital Info

Posts

June 29, 2011

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Virginia

December 31

Cancer Info

Brain Cancer

Astrocytoma Grade 2/3

February 14, 2008

4.1 - 5.0 cm

That it exists

That life goes on even when you are hit so hard, you think you can't get up again

Major seizure led to discover and diagnosis, no other symptoms otherwise.

Biopsy 2/15/08 Partial tumor extraction 5/15/08

Scheduled for first time chemo (Temodar) in July 2011

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