STEAM ROOM FOR ANGER

Sara536

Sorry that’s happening to you. I think one reason I get second opinions before choosing a doctor is to rule out the “cardboard” docs. I know that may not be a good indicator of their skill but I need to have my questions answered. On the other hand, I think I probably chose the wrong plastic surgeon because she made me feel good even though I had some reservations. It’s too bad that when we are under the pressure of getting rid of cancer we don’t have the time to think clearly. I was fleeing a university cancer-mill where I was quite definitely a rat in a maze. I often think I should have just surrendered, put a bag over my head to eliminate my need for human contact, and continued there.

mustlovepoodles

I feel very ashamed for saying this, but my DH is driving me insane. He has been disabled with heart and lung disease for about 12 years and his health gets worse every year. Up until this year his symptoms were primarily physical--shortness of breath, considerable fatigue, low stamina. Things began to change last fall, as far as I can tell. He began to slip mentally. By Feb 2018 he was having speech, memory, concentration, and balance issues. CT scan revealed a silent stroke sometime since the last CT in June 2017. We have no idea when it happened. There is also something going on in the pons, which is near the brainstem, but is not affecting the brainstem. His doctor thinks he has sarcoidosis in that area, because DH already has it in his lungs, heart, and another area of the brain. So, now DH is on 30mg prednisone, in addition to the 23 other meds he takes (you think I'm exaggerating? I'm not).It's not helping. DH has had 4 serious falls since May. One results in 8 stitches. His cognitive impairment is evident to strangers. The doctor says it's not dementia. But DH will ask the same questions several times a day and doesn't realize he has already asked before. He has set up several reminders on his phone to remind him of appointments, but he often forgets them. He gets lost driving--eventually he figures it out, but I cannot trust him to drive to his doctor, the hospital, of the library. We live in a tiny town, so this isn't rocket science. The two things he does manage to remember are paying the bills and taking care of the car. Thank goodness for that. But he is having great difficulty recognizing words, so he asks me multiple times a day to spell the most random things. It's wearing me down.

So here's the thing. I feel cheated. I could deal with the physical side of his illness. He's been sick a long time and we've always done just fine. But I feel betrayed by his cognitive impairment. I am really tired of being his mother. I have to verbally remind him of things several times. I leave post-it notes on the bathroom mirror. I set up a calendar on the fridge with all the appointments. He still forgets. He has nearly missed several appts. At this point, I go with him everywhere. Every. Where. And he goes with me EVERY. FREAKING. WHERE. I cannot have him cook anymore, because he loses track of what he's doing. I don't allow him to drive much, unless I'm in the car. I feel like I don't get a moment to myself. We have friends. We both have things to do. But he chooses me. And then I feel guilty for feeling so badly toward him.

vampeyes

Awe Poodles I am so very sorry you are going through this. It sounds like Alzheimer's to me, couldn't be all the meds could it? Any chance of getting help around the house or someone to drive him to appointments? HUGS hun, you need a vackay.

Micmel

poodles~ I am so sorry for your situation. I think he always wants to be with you, because you are his person. He knows your soul, you're his protection source. It sounds like you need a planned spa day or a day just for you. No matter what, you do for you as well. When you Come back, from the spa day bring him his favorite candy bar or his favorite treat. Show him it's not so bad... you'll come back. Also... for you. In case you haven't heard of a service called “cleaning for a reason “. They offer up to three free cleanings of your home for no charge, for any woman who is suffering from breast cancer and the treatments. Look into it, give yourself at least a break from the dreaded cleaning at least. I will keep you in my thoughts ! Much love ~M~

Artista964

my aunt's husband has Alzheimer's. She feels the same way, like his mother. He is aware of his issues but can't help it. He's scared and frustrated and sad that he's losing his cognitive abilities on top of physical stuff. At some point she'll have to put him in assisted living. Insurance doesn't pay for it and he's not that far gone yet so she holds off.

Can family give you breaks like couple hours here and there? Helps her because he is stuck to her like a lifeline.

Mominator

(((HUGS))) Poodles

Could you ask his doctor(s) if DH needs all 23 medications? I realize that he has a lot of medical conditions. However, that's so many medications there's a big possibility of drug interactions and side effects. Despite his stroke and other physical effects, some of the medications may be exacerbating his cognitive issues.  

Also, there are some medications that may help improve his cognitive functioning. 

Best wishes to both of you.

Mominator / Madelyn 

Sara536

Great idea from Mominator, in fact I have heard that some pharmacists will go over the collection of meds to see if any conflict. Are they from more than one doctor? Could be that one doesn’t know what the other is doing. Too many cooks may be spoiling the broth... I'm so sorry you're in this situation.

mustlovepoodles

I'm pretty sure DHs meds are a factor. Unfortunately, he needs them all. Thankfully, housework is at a minimum--we live in our RV up in the mountains. Its just beautiful up here and that helps us both.

I do think that he sees me as his person, much like my little curly dog. I imagine i represent his past and his future. We've been best friends for 42 years. The only person who has known and loved him longer is his sister. I never really thought about it that way.

His neurologist says this is not Alzheimer's or another dementia. More likely these symptoms are related to the stroke he had, and neurosarcoid. I am trying to be understanding--i know he's not trying to be aggravating, but there are days i just want to scream. I just want things to be normal, like it was before sarcoid, before cancer, before heart disease took so much away from us.

Foo! I think I'll have to take you up on your idea for spa day. Maybe a massage and a pedicure would work som magic for me.

mustlovepoodles

My little curly dog, Tiki-bird.

Micmel

hugs for everyone I hope !! Precious lil puppers. So pretty white! Just take one day at a time and arrange that spa day! Or make a dinner just for him and tell Him that. He needs reassurance and comfort from the only person he probably trusts. YOU. I know that my DH is my care taker. I honor the ground he walks on. I adore him more than words can express. But I do realize that at times. He needs to have something for himself. You being the caretaker must do things for yourself. But always bring him a trinket of sort. To kinda make new memories. It will show him you're thinking of him also.... and that you're going out to do things alone, isn't so bad after all. He may even want you to do more things, if he wonders hmmmm wonder what she'll bring this time. Maybe silly things, candy rings. Candy bracelets. Funny things. Change his way of looking at you briefly stepping out for errands or a hair day. Slowly, he may become more comfortable as you go on. I'm sending hugs across the miles. ~M~

Amica

Tiki-bird is a doll! so cute. Cheered me up to just to see his big black eyes and his expression

I feel for you mustlovepoodles Your situation sounds really trying, and there are no easy solutions. I don't know what to say, except I'm sorry you have to deal with so much.

Amica

mustlovepoodles

Thank you all for your kindness. My hubby loves this little dog. Tiki was a badly abused rescue. We've had him 5 years, but he's probably about10 now. He's the only dog my DH has ever allowed in our bed, LOL. If something happened to Tiki, it would destroy my husband.

Micmrl, i like your ideas. Today i disappeared to the library for about 2 hours. I brought hin some donuts and it just about made his day. Then i fixed him some ham, potato salad, corn, and green beans for dinner. Its been raining here all day, so it was nice to throw the door open and get a fresh breeze in here. Did us both some good

Micmel

that's awesome! I believe if you can just change his way of thinking about you going out. He may be more accepting each time when he thinks about it, you always show him you always return! I hope it continues! 🌷~M~

Meow13

Cute little doggy.

AllyBee

I hope this is the right place to post this, I need to get it out somewhere.

I've been off work for the past four weeks after a crainiotmy for a brain met and have just started chemo today. I was meant to go back to work this week but at the last minute they advised me I need a medical clearance, which I completely understand.... But getting this clearance is so bloody frustrating. Every nurse/doctor I talk to about getting a clearance looks at me like I have two heads. Asking why I would want to work during chemo.

I have no side effects from my surgery and they keep stating side effects that I might get from chemo. How can you deny someone the ability to go back to work based on a side effect that might happen.

My regular oncologist is on holidays and every other doctor refers it to someone else to deal with.

I feel like because I'm metastatic they think I should just stay home till I die. Like I am unable to contribute meaningfully anymore. I wish they would consider the mental health effects as well.

Rant over, thank you for reading and sorry for the long post.

Lula73

Allybee- some chemo can be brutal. See how today goes. Once you’re written back to work it can be hard to write you back out. These 2 reasons are likely why they're looking at you crazy. On the employer side, often they’d prefer you stay out than come back and have to go right back out again unexpectedly a second it messes up their workload/projections. Or have to take a bunch of sporadic sick days putting them in a bind.Just depends on what you do for a living.

Amica

AllyBee

Sorry to hear that. It's hard enough to fight the cancer, let alone have to fight your employers for the right to work! Wishing you strength in this struggle with bureaucracy.

take care,

Amica

Micmel

Ally~ I am in remission and have had the toughest chemo out there. It sucks. It does have an accumulative effect on our bodies over a time period. One or two may not be a good judgement of the lasting problems. You couldn't pay me enough to go back to work. I just couldn't make it. Most likely they have seen this before and know that soon you will need your rest and will somehow start fighting the fatigue, and joint aches and neuropathy that comes along with it. I totally agree with going back and having to come out again. Not a good idea, it also makes them employer label, “problem" . If they have short term disability, start with that and then move into long term . Use that while immediately filing for social security Benefits at the same time. Just remember social security has a waiting period before you can collect.

Don't over extend yourself and then find yourself unable to work, if you go out on disability they have to continue paying you as long as you paid into the disability with your pay checks. It's a very hard thing to fully recover from and it takes time. At stage four things are so sensitive and there is that chance of progression we all fear. There is also a chance of many surgeries that could arise out of no where. So far for my cancer, I have had 8 surgeries. I could not work, there is just no way. Too much medication. And even after your chemo, most likely you'll be on sometime of chemo for the rest of your like if you are stage four. Oral or iV or hormonal. It's rough. Please think about it. Also, just because you don't work doesn't mean you haven't kicked a** while you were working. It doesn't take l away what you have done, now it can open up windows for things you HAVENT done. Spend time with loved ones. Travel. Enjoy the time feeling good. Because those times can also be fleeting. I am sending you a bear hug, since you have no pain and wishing you the best for your difficult decision! And yes you're in the right place. Hugs ~M~

candy-678

AllyBee-

I don't know where you live or what you do for a living.  Lula73 had a good point.  Some employers may be concerned about coverage if you have sporadic days off due to side effects of chemo and how you are feeling.  It may put them in a bind or cost them financially.   

 Give yourself some time.  See how the chemo goes and then continue to pursue getting clearance to go back to work.  Make sure you are not spreading yourself too thin and will exhaust yourself too much. Now with this cancer diagnosis you need to think of your health and give your body a chance to fight the cancer.  

 My experience is the total opposite.  My MO ( previous and current ) feels that one should continue to work and maintain normal activities as long as possible due to the mental issues of depression, etc.  I talked with my local Social Security Office about the possibility of disability due to my diagnosis and the lady there also said to continue to work as long as I possibly can.  

I have a feeling, from the words you used in your post, you are not from the USA.  I guess in the USA the doctors and bureaucrats want people to continue working to have an income to afford the doctor visits and to continue having the health insurance to pay for the services and not burden the system asking for "handouts".

Remember, just because you are metastatic you are still important and I hope you can go back to work soon and get some "normalcy" back.  Just take care of yourself.     

mustlovepoodles

Let me share an experience i had this morning: i went to my PCP for my pre-op testing. I needed an EKG, so I forewarned the young lady that i had had a BMX and my chest looks pretty bad. Her response was:"Oh, that's okay. I had a breast reduction, so i know exactly how you feel!" Seriously....i was so dumbfounded that i just sat there while she prattled on about her perky 22 year old breasts. Yeah. That's totally like losing your breasts to freaking CANCER.

I didn't say anything at the time, but I'm going to call the PCP and have her deal with this young lady. I'm sure the girl was just trying to make conversation and mistakenly thought that we shared a common breast issue. But her comments were thoughtless and would have been hurtful to me at an earlier time in my journey.

Lita57

AllyBee...good advice on going on Disability. If I had gone back to work, it would have KILLED me, literally, and I mean that. I had a VERY stressful job as both the Senior Contract Administrator/Accounting Manager for a very busy construction company. I'd have to go in on weekends EVERY WEEK, just to stay caught up.

They had to hire TWO full-time people to do my job after I "retired." Boy, my boss got a great deal for YEARS by exploiting me to the max, considering he's now paying TWO people to get the job done instead of just me.

In Calif, you can get State Disability for a YEAR, and it paid almost my FULL salary (but I'd been working full-time since 1986, so of course I'd get the maximum benefit). It's very easy to apply for...you can do it on line. Hopefully, you can swing this with your employer. Some are NOT keen on employees being gone for that long. My former boss still keeps begging me to come back. (Guess the new gals just aren't gettin' it done...no attention to detail or accountability from these younger people these days. They just want to do the LEAST amount of work for the MOST amount of pay.)

Good luck, L

Amica

mustlovepoodles...

Oh man, I agree, that is such a thoughtless insensitive statement...people can be so D-U-M-B.

AllyBee

Thank you everyone for taking the time to reply, I do know that this won't be easy but I just feel I should work while I can, I'm 35 and hope I still have a few years left. My employers are more than happy for me to come back and do reduced hours if needed, I just think none of the Dr's want to be the one to sign it off, it could be the crainiotmy recovery that is scaring them more than chemo. I just wish they would sit me down and talk through their concerns so I can address them, give me a full physical exam to actual see if I have limitations. But my request just gets passed from Dr to Dr.

I'm in Australia and I would qualify for disability but it would be less than half my current wage. I would love to quit and take my family traveling but if I'm not working we won't be going out to Maccas let alone overseas haha.

It mainly a mental health issue for me, I want to be productive as long as I can, I'm not ready to give up. I miss my work colleagues and using my brain. I miss the free birthday cake in the lunch room

Edit to add I had dexamethasone with my chemo yesterday, I may have been a little roid ragey, this was just one of my many rants my husband had to listen to when I couldn't sleep last night.

Micmel

Ally~If you have a good employer. Then more power to you!! I think it's amazing that you want to continue and understand completely. Even though I am on disability I have two types. One from the federal. And one from aPrivate disability company that I paid into through working there. Still today, that company pays the difference of what i would have made, had i continued to work. It is the disability Company that makes up the difference. That's why you should take a trip down to HR to find out your options... keep being amazing!! ~M~

DancingElizabeth

Vent alert about a dream I had last night.

I've had dreams before about being told that I didn't really graduate from college and forgot to complete some classes or test some tests. And, need to go back to school.

I dreamed last night - that I didn't complete "Part 2" of chemo. In my dream - I was told that in the "fine print" of the information that they gave me when my treatment plan was made - that I was to come back in 2 years - to complete "Part 2" of my treatment plan. And, that this is for patients like me, who were "very high risk - Stage 3A or greater".

I woke up several times and wasn't sure if it was real or not. And, every time I went back to sleep - I went back to the SAME dream. Like it was continuing. This went on until the morning.

I laid in bed wondering why the nurses never told me (verbally) that I still had to complete 3 MORE months of chemo and do 3 MORE weeks of radiation. And, wondering, why I never heard of there being a "Part 2" to the garden variety treatment plan for ER+ BC.

It took me 10 minutes to realize that my brain made this up.

Why can't my brain let go????

I hate living in fear. I hate this f*cking disease.

candy-678

Ally-

 It is great your employer is willing to work with you and your situation. 

 In America, when I looked into Disability it was 60% of my pay.  I am single and I totally understand the financial aspect.  I couldn't afford to go on Disability AND still have to pay for health insurance.

 MAKE your docs talk with you. Call everyday. Tell them you deserve answers to your questions and an explaination to their concerns.

Never give up!!!!!   Fight the cancer!!!!!    Birthday cake in the lunch room sounds good also.

Keep us informed.

TaRenee

DancingElizabeth I hate that! If it’s a dream I WANT to continue when I go back to sleep I never do. But dreams like that, every time! I didn’t have chemo so my dreams usually revolve around the “you’re gonna die because you didn’t have chemo” even tho my MO said that they didn’t think it was necessary for me. It’s terrifying waking up from something like that. Then try to convince yourself and your brain that it really was just a dream. (these days I’m not sleeping enough to actually dream, so there’s that)

vampeyes

DancingElizabeth and TaRenee - those dreams that seem so real are the worst, you wake up a little confused and depending on the dream a little sad, angry, etc. ]

I am with you lately sleep is not my friend TaRenee. Not sure if it's too much on my mind with my step dad or what, but I wake in the middle of the night to take more melatonin to get back to sleep.

My vent is that I am angry with my step dad for leaving us too soon. I miss him and think of him often, I think the boys should tell grandpa about his he would like that or the boys should show grandpa, but they can't he's just gone. Why couldn't he have taken better care of himself so he could stay longer with us? Why didn't I make the time to spend time with him before it was too late? Why did he leave me to deal with my lying, drama seeking mother? Why can't we go back in time knowing what we know now and make changes? F!!!! When will the pain stop? I was doing good till his brothers stole from the house and brought it all back - the reality that he's gone. I picked up all his racing t-shirts, soon I will be starting a quilt with them.

Is it normal to be angry at the person who got cancer and died on us to soon?

Lula73

vampeyes-what you’re feeling is 100% normal. It’s the anger and resentment stage of grief and while it may not seem like it right now, it is a healthy part of the healing process.

Mominator

Vampeyes, yes, it is normal to be angry at the person who got cancer and died on us to soon. Maybe they could have caught it earlier, maybe they could have been treated and cured. Maybe they would still be here instead of gone. 

Some cancers can't be caught early. 

In either case, your step dad is still gone, and you miss him. 

I think you have four overlapping issues: 1. You're angry at him for leaving too soon. 2. You're angry at yourself for not spending enough time with him. 3. You're angry at the brothers for looting his house. 4. You're angry at your mother for being a drama queen. 

However, you want the pain to stop. So, what now? You cannot change 1. and 2. You can remember and treasure the good memories with your step dad. And you can learn to accept and forgive your step dad for not taking care of himself/dying and yourself for not being there more often. Some people talk to their deceased loved ones. I can talk to loved ones who have passed a while ago. I can't talk to my mother just yet, it is still too raw. I am still working on accepting that she has died. I'm making progress on that. 

3. As for step dad's brothers, you have a choice in how to deal with them. Do you wish to talk to them (maybe not quite confront) and ask for step dad's possessions back? Maybe your siblings or mother might help? Maybe they were taking memories for themselves? Maybe they didn't know the value to you and your siblings and mother? Give them the opportunity to make it better. You can also decide whether it is worth asking a lawyer for help.

4. As for your drama queen mother, what relationship would you like with her now? Talk with her if possible. We have drama queens in both sides of our family. 

You are at a crossroads. It reminds me of the Serenity Prayer:

God, grant me the serenity to accept the things I cannot change,

Courage to change the things I can,

And wisdom to know the difference. 

If you do not believe in God, please accept this as a blueprint for making changes within yourself: 

I will learn to accept the things I cannot change,
I will find the courage to change the things I can,

And I will find the wisdom to know the difference. 

Best wishes, Madelyn / Mominator