ADVICE NEEDED: AA3 Brain Cancer

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ADVICE NEEDED: AA3 Brain Cancer

by echarlick91 on Tue Jul 11, 2017 07:14 PM

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My boyfriend was diagnosed in December 2016, with surgery and 6 weeks radiation/chemo.  Followed by maintenence chemo (which he kind of takes when he wants), he's very stubborn and thinks the chemo is a scam.... He took his maintenance chem april for three of the five days, may 4 of the 5 days, didn't take it June at all, and now we will see if he does in July. He has two boys that live with us most of the time and he still hasn't returned to his job after 7 months diagnosed....  He was just approved for disability, so i don't see him returning to his job.  He does work in the shop in the back yard and earns money, but it's not steady income and it's making things hard and money is very tight....

I'm struggling with him understanding my concerns and issues and he just says he's trying to figure things out.  And i'm trying to be understanding of that but it's hard.  Josh is turning 30 this month, i'm 25 and the boys are 8 and 6.   We have been together for about 1 year and a half (he was diagnosed 9 months into dating).  I love him very much but its really hard being the only working one and mostly supporting the kids and him by myself! 

Part of the hard part is working full time, when he gets to be at home and do what he wants.  He isn't really sick because he isn't doing the Chemo, and the last time he did it he just got really tired.  I think he is depressed and doesn't want to work but he also doesn't want to do counseling.  We did one session together and she gave him somethings to work on which included trying to get on a normal schedule of working a few hours a day.  He didn't do that and we didn't return to counseling.  I know part of the issue is that i'm jealous that he gets to be at home with the kids all day and kind of do what he wants in the shop and i have to work an 8-5 job and then we are still broke.   But i don't know how to be ok with it and i don't know if anyone out there is going through the same issues.... I grew up with two very hard working parents,  when i met Josh he was hardworking and never missed work.

Thank you in advance!

RE: ADVICE NEEDED: AA3 Brain Cancer

by diazfam on Wed Jul 12, 2017 12:43 AM

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Hi echarlick91,

First of all, let me say I'm sorry for all that you & your bf are going through. Cancer of any kind is a horrible diagnosis & can take a lot of time to process. It generates a huge range of emotions from disbelief and fear to outrage and denial. And sometimes all of those in the same day! It is for sure a rollercoaster of the worst kind. And at 25 & 30 with little kids, very, very hard to deal with.

AA3 is something I unfortunately have some experience with as my son was dx with this in 2005. He is now 23 & continuing treatments. For many years after the initial surgery, chemo & rad, he had no problems. Then in 2015 he had a recurrence & has been struggling since.

As far as your bf being depressed, it is completely understandable. His (and your) life has just been thrown off kilter & suddenly everything is not what you thought it would be. Regarding disability, it is very difficult to live on a disability income but thankfully, he has it. He should also qualify for grocery assistance & medical coverage. His depression & your stress is probably exacerbated by working & caring for little ones. If he isn't interested in counseling right now, please consider going for yourself. He may change his mind at some point. There are also support groups for caregivers & for pt's that might help you both. Is the boys' mother in the picture that she could help with their care? Or grandparents?

Many people do very well for a long, long time after an AA diagnosis. Years & years!! I pray that is the case for you both & that you will have lots of wonderful anniversaries  together.

Hopefully, your bf will get good reports & be able to continue on maintanence chemo alone. If he is "skeptical" of chemo though, is he willing to look into other options? How often is he doing follow up?  For the depression, has he tried an antidepressant? That may help. A lot of cancer patients & their caregivers take something to help adjust to their "new normal".  Again though, regardless of what he decides about his own treatment, I would encourage you to talk with your own physician or therapist about how you can best deal with this & care not only for him & his sons, but for yourself. You have to take care of yourself both physically & mentally in order to have the energy that it will take to care for him & the boys.

Please take care & know that you are in my thoughts & prayers.

Hugs,

H

RE: ADVICE NEEDED: AA3 Brain Cancer

by echarlick91 on Wed Jul 12, 2017 02:55 PM

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Hi Diazfam,

Thank you for the reply!  He has ideas about chemo that it's a scam and is slowly killing him and it's just a way for the health industry to make money.  He is supposed to do maintenance chemo 5 days a month for the rest of the life which we have already talked to his doctor about that.  A lot of stories i've read are people take the maintanence chemo for 6 months to a year, which the doctor did say people take a chemo holiday and that Josh could choose to do that if he so pleased.   He is just a very stubborn person and i'm mentally and physically exhausted.

The mom is in the picture but she lives about two hours away and only sees the boys on the weekends.  This summer the schedule has flipped and she sees them more but that's a whole different story. Shes a good mom, but i do more of the "mom" duties then she does...  as in buying them things they need, reading with them and doing their homework.  Jack (8) was behind in reading last year and was at a first grade level when he started second grade.  He ended second grade above reading level and gained a year and 6 months reading in that school year.   She is fun mom. 

Counseling for me is a great idea... I had gone once by myself a few months ago but i didn't really like the counselor.  I liked our counselor we went to for couples so maybe i'll go to her for myself.

I just thought that our life would return to our old normal life.  I don't like the idea of being the bread winner, and living pay check to pay check the rest of our life.  His credit has gone down just from late payments on his credit card and car.  I work for our insurance company and i've been able to keep him from not collecting ANY debt in medical bills thus far (partly thanks to a grant we got for his chemo).  But i don't think he cares about the dreams and things we talked about before cancer anymore.  Which is sad for me, because i looked forward to having kids of our own (which he still wants), buying our own home and enjoying life.  It's just hard.....  

RE: ADVICE NEEDED: AA3 Brain Cancer

by diazfam on Thu Jul 13, 2017 03:56 AM

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Hi echarlick91,

First, a couple thoughts about chemo. A lot of times, the drug companies will provide the meds at a substantial discount or even free if you call them. There is also a website called www.needymeds.com that offers assistance with copays and such. I may have another website too, I'll have to look tomorrow. Chemo has a purpose- it kills the bad cells- however it also kills the good cells which is where all the side effects come in. You have to weigh the risks and benefits and its a personal choice for everyone.

Second, congrats on bringing Jack up to speed in school. That is such an awesome accomplishment! I love to read and I tried to instill that in my kids as well. It's a huge barrier in school for kids who struggle with reading, so that's a wonderful, selfless thing that you did!

Someone once told me at a conference I was at, and i thought this was a brilliant comparison, that if you didnt like the way the hairdresser cut your hair, would you never get another haircut? Absolutely not. So if you didn't like the therapist you went to, try another one. it was just so appropriate, lol. Sounds like you have a good connection though so you are ahead of the game.

As far as a "normal" life, I'm not sure any of us fall into that category. We just have to adjust to the "new normal" as best we can. It's very tough to think about "what could have been" or what we should be able to do. My best advice is to try to let that stuff go for now and just take each day as it comes. Maybe some of that other stuff can still happen, but for now, with a new diagnosis, it's baby steps. I would suggest talking with his doc about sperm banking if you are serious about the possibility of having children together at some point. I'm not sure where you are located but I know Northwestern Medicine in Illinois offers that. It's kind of expensive but at least it's an option. Chemo is hard on the reproductive system, just like the rest of the body.

Utilize the nurse navigator or social worker at his doc office or call the american cancer society and ask about credit counseling and how to arrange for help with those credit scores. There are resources out there but sometimes it takes some digging to find them.

Hang in there and try to let each day be it's own work in progress. Cut yourself some slack - you sound like you are doing everything you can and you should be proud of yourself!

Take care,

H

RE: ADVICE NEEDED: AA3 Brain Cancer

by Dodgerblue on Thu Jul 13, 2017 03:39 PM

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I would not recommend staying on chemo indefinitely.  I also don't think it's a hoax.  My NO Dr. Wen of Dana-Farber told me there is no evidentce that doing the maintence chemo for more than 6 is beneficial.  I would strongly recommend doing the 6 month though.  Were his surgeons able to remove all visible tumor?  If so, radiation and chemo are designed to kill or put remaining cancer cells into a coma like state, in which they are not reproducing.  If he has remaining visible tumor, this may change things a bit.

Dodger

RE: ADVICE NEEDED: AA3 Brain Cancer

by furqanshakeel on Fri Jul 14, 2017 06:47 AM

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On Jul 11, 2017 7:14 PM echarlick91 wrote:

My boyfriend was diagnosed in December 2016, with surgery and 6 weeks radiation/chemo.  Followed by maintenence chemo (which he kind of takes when he wants), he's very stubborn and thinks the chemo is a scam.... He took his maintenance chem april for three of the five days, may 4 of the 5 days, didn't take it June at all, and now we will see if he does in July. He has two boys that live with us most of the time and he still hasn't returned to his job after 7 months diagnosed....  He was just approved for disability, so i don't see him returning to his job.  He does work in the shop in the back yard and earns money, but it's not steady income and it's making things hard and money is very tight....

I'm struggling with him understanding my concerns and issues and he just says he's trying to figure things out.  And i'm trying to be understanding of that but it's hard.  Josh is turning 30 this month, i'm 25 and the boys are 8 and 6.   We have been together for about 1 year and a half (he was diagnosed 9 months into dating).  I love him very much but its really hard being the only working one and mostly supporting the kids and him by myself! 

Part of the hard part is working full time, when he gets to be at home and do what he wants.  He isn't really sick because he isn't doing the Chemo, and the last time he did it he just got really tired.  I think he is depressed and doesn't want to work but he also doesn't want to do counseling.  We did one session together and she gave him somethings to work on which included trying to get on a normal schedule of working a few hours a day.  He didn't do that and we didn't return to counseling.  I know part of the issue is that i'm jealous that he gets to be at home with the kids all day and kind of do what he wants in the shop and i have to work an 8-5 job and then we are still broke.   But i don't know how to be ok with it and i don't know if anyone out there is going through the same issues.... I grew up with two very hard working parents,  when i met Josh he was hardworking and never missed work.

Thank you in advance!

Hello..MY father has stage 4GBM..he had done his surgery of 29-June 2017..Docter said 95% tumor removed..now Docter is asking to start radiation by the 28-July till the next 10days daily..after this they will start chemo...I want ur opinion should i start radiation and chemo? if you see my father his recovery is goods after his surgery..we dont want him to be in trouble after radiation & chemo process..pls help me out by advising what he needs now? 

RE: ADVICE NEEDED: AA3 Brain Cancer

by echarlick91 on Fri Jul 14, 2017 05:03 PM

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Yes!  They removed ALL the tumor and as much around it as they could, the surgeon was very aggresive with it.

RE: ADVICE NEEDED: AA3 Brain Cancer

by echarlick91 on Fri Jul 14, 2017 05:05 PM

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My boyfriend did Radiation and Chemo about a month after surgery as well.  He was very tired from the radiation and chemo but i think it was the best decision for him to do it.  He did that combination for 6 weeks though. 

RE: ADVICE NEEDED: AA3 Brain Cancer

by echarlick91 on Fri Jul 14, 2017 05:07 PM

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Yes! We got a grant for his chemo back in January and met his OOPM so now our plan just renewed, so we need to do that again. 

We did already bank his sperm back in January before he started chemo/radiation and we got a discount throught the livestrong foundation which made it very reasonable. 

The hard part for me is the "let stuff go for now and just take each day as it comes" but i know that will help with everything... it's just really hard. 

RE: ADVICE NEEDED: AA3 Brain Cancer

by furqanshakeel on Fri Jul 14, 2017 07:47 PM

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Ur boyfriend is young enough to bear all these process radiation chemo and may God give him strength and power to recover soon...but the sitaution here is change my dad is about 63years old he is already heart patient and after surgery on 29june he got very much weak....and am not sure that he could bear the pain of radiation and chemo...what I want is that any thing that I skip all these process left to be done and wait for few days and see the poisition of mydad..and 2nd option is can I go for the herbel medicane to remove or stop the tumor...pls advise thanks

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