Tired of trying to keep my head above water

mason204

I thought I'd post this in this forum.

On the surface it probably sounds like one of those "how do you best cope with Stage IV cancer" type posts.  Under the surface, it runs much deeper.

As many may know, in the past 3 weeks I've been dealing with:

*my eldest DD and her bout of chicken pox and caring for her
*my youngest DD fracturing her leg and caring for her
*my bad cold (hate to say flu these days) that I caught 2 weeks ago
*flare up of my bone mets that has had me drugged and in bed for 4 days

Again, not so unusual when you have small children.  However, I'm NOT holding it all together in my household.  Yes, I've heard the usual things from the social worker - get help from friends, get your kids to do more....

What happens when you do all that and it still isn't enough?  If this is what it's like now, what happens if/when my cancer progresses even more...?

My kids are way more mature than they should be at their age.  They can cook dinner, they can wash dishes, mop a floor and do most household chores.  I thought most kids their age did this.  I was shocked to find out that very few of their friends come close to knowing what they know to run a household.  In all honesty, I REFUSE to ask them to do more.  They're doing enough.  Especially when the youngest has a cast on her leg and can barely move from room to room

As for my husband - he works a lot and HAS TO because I no longer can.  I'm happiest when he's a work as I know there's money coming in and there's some normalcy in my household.  He can't stay home - we need a roof over our heads.

As for my friends, they bring meals and help keep an eye on my kids when they can.  They have small children too and can't do much more.

With all that, it's still not enough.  I know it's not enough because I'm laid up flat in bed because I must have done something to aggrevate my mets.  No, I didn't carry the kids.  No, I didn't do gardening even though it's killing me to see how things have deteriorated.  It's mets and there's no rhyme or reason why they flare up when they do. 

I'm in active chemo right now which doesn't help but it's reality.  I've missed the past two chemo treatments because of all the stuff going on.  I should be happy and glad about the break but I'm too busy trying to keep my head above water to notice I haven't been on chemo lately.

I hear a lot about palliative care and hospice.  Isn't that for people who are dealing with "end of life" issues.  Am I in denial?  I don't think so but where's the support for people who aren't newly diagnosed but who are not yet dealing with "end of life".  The lack of support scares me more than dying.  Not to mention what happens if you start feeling pain.  How do I in my current situation spend 8-12 hours in an ER waiting for assistance only to be told "oh, you have cancer - we're not familiar with your case".

Sorry, I had to vent and this is a long post.  I can't say I'm depressed (I have no time for that right now).  I think I'm just disappointed, disillusioned and scared.  Tired of hearing "you need to delegate more" or "can your kids do more to help?".

I want to do more than try to keep my head above water.  I want to thrive!  Is that asking too much.  Cancer sucks.

barbe1958

Oh Cheryl, you poor soul! What is it that you're trying to do that you don't think you can? It sounds like you have everything under control except your emotions and you DO NOT have to have them under control! You have the right to rant and rave and stomp your feet. Absolutely! But, you don't have to have a spotless house, or a hot meal on the table every night. Clothes can be worn more than once. You can spend quality time with your daughter lying down with her and her poor leg watching a silly video. Your husband is doing his best, and it sounds like you are too! Do you have a church group? Have you called the local Canadian Cancer Society Office? Try the Salvation Army, uhhh, can't think of another one right now, but I'll pipe in when I can.

You are doing just fine by virtue of the fact that you can put your frustration into words so well. It is well articulated and logical. You are not hysterical at all, so take a deep breath.

I hope someone comes by to "talk" to you as well, but I just had to let you know I care..

barbe1958

Oh, the thriving part. Your body is in "fight" mode right now; it is a survivalist tactic. You don't grow and thrive in this mode, you just exist. When you are able to heal your psyche a bit, you will see a difference. You need some "down time", a "time out" a "recess" call it what you may. You need a big HUG! Is there anyone that can just pamper you for a day or two to take some of the stress away?

I used to say "stop the world, I want to get off!"

dreamwriter

Mason... I live in your city!  You can call Community Care Access C, (CCAC) and there may be another agency.  I deal with Community Care East York which is separate from CCAC.  I dont know what the the last c is.  I will PM you my phone number - I can help you get set up.  Stage 4 people do have personal assistants that help with showering (I dont need help but will not shower unless someone is home), dressing, housework, laundry.... ext... all based on expenses and income.  I dont know what part of the city you live in so I cannot help you til I do.

Fitztwins

Mason,

Oh honey. Cancer  takes away our control and it frickin' sucks!!! When I was laid up in bed (hip/chemo), I felt so down. Angry, Frustrated, like you said, overwhelmed with life.

I couldn't water my flowers, my gardens were full of weeds, the cat box overflowing, the bathrooms dirty, it hurt to walk, I couldn't even fix dinner for my family with out pain.

I had a lot of help.DH was a gem, my mom comes over 5x a week, meals, I had someone clean, but it wasn't the same.

When I did work and made dinner I ended up in bed exhausted for the rest of the night. I couldn't move. My husband and kids were living life and I was a slug in bed.

One of my boys is struggling with reading (a grade level below where he should be), I just felt like I was failing as a mom.

Cheryl, I so understand about feeling like you are tredding water. It is hard to keep up with life with all that you have had on your plate. Back in February, I was recovering from hip surgery and our family got hit with a stomach virus.  It was horrid. All I could do was make it to/from the bathroom and bed.  I thought, What the H*$% is this? living? I remember a few days later just crying and crying and crying. I think about how my husband is going to survive with out me? I joke with him all of the time. What I do know is that they will be OKAY. They will find their way. If/when I get too sick to take care of myself, then I will call in hospice.

Honey, you are in a valley right now. I remember a few months ago, you had another hard time and hadn't gone out of the house for a while. Battling cancer and being a mom is hard. It takes every ounce that we have. There isn't much left for us. We are spent. 

I keep telling myself, I can't do it all. It doesn't matter if the house is a mess, dust is a mile high, if the kids have to eat cereal, wear dirty clothes, etc...

All that matters is that we are here. Today is what matters. You are here Cheryl. You may feel like crap and hurt all over. But you are here and to your family that is what matters most. All the rest is not important. They love you.

Hang in sister. Better days to come. Eye on the better days to come.

Janis

ElaineD

As Janis said-"better days will come"-and they will. You're doing a grand job, and don't think otherwise! Why do problems never come singly, though....You're a Mum, and naturally want to be nursing your daughters at the moment, but circumstances won't allow it-and that in itself is enough to cause a huge amount of anger. Keeping your head above water at the moment is a remarkable achievement, so please don't beat yourself up for being unable to do more. In time you will thrive...you will.....Love and hugs heading your way,x

mason204

Thanks, everyone.  I went to church today.  My bones hurt like nobody's business but I'm tired of lying around.

Thanks for all your support.  In the 5 years I've been going through this, I've tried everything.  Honest.  I could write a book about resources - I've tapped every tree.

Dreamwriter, you're right about CCAC and EYCC.  I also live in East York.  CCAC set me up with some awful homecare people in the past.  In one instance, just before I had my first mastectomy, the worker had just returned from work after having her mastectomy.  She spent most of the 2 hours talking about how it was the worst thing she ever did, how my chest would end up deformed and how did her employer expect her to help me if she wasn't well enough yet.  My husband had to follow her around and do the work for her!  In another case, the worker came over with terrible stomach flu.  She said she "had to" work because she needed the money.  My husband immediately called a cab, paid for it, and put her in it.  This is typical of what I get when I use government funded help.  I talked to the government, I wrote them letters, I talked to the homecare organization top management, you name it, I did it.  I'm assuming that nothing's changed.  The organization in question was awarded ADDITIONAL contracts in the city (East York included) and I almost fell off my chair.  Oh, there's more but I won't take up more time in this post with it....

Now, with CCEY, it's a great organization and I thought I'd use them because of the experiences I had with CCAC.  The worker they assigned me to I never see.  She comes over and leaves about 1.5 hours early because she has to get home for her kids.  She's a wonderful woman but doesn't really do much.  Often, she doesn't show up at all.

That's the type of help I've been getting....

This is why I'm so afraid my cancer getting worse.

I'm not a neat freak.  My house was never the epitome of cleanliness.  However, I can't bend down and stuff falls to the floor faster than we can pick it up.  My daughter almost fell down the stairs because she tripped over something on the floor in the middle of the night with her crutches.  I can't get into my bed to lie down because my hubby does laundry daily and it sits in piles on top of my bed.  My kids put away what they can but he does laundry early am, they're at school all day, and then it gets put away at night while I sit on top of the bed staring at it all day.

I guess you can tell I still have a lot on my chest.

barbe1958 - I agree, we all need pampering!  I just came back from an overnight spa two weeks ago.  It was wonderful and I want to go and live there.  Why can't I?

Oh, I did try to hire someone (a mother's helper).  She was so friendly and the kids loved her.  But, it took her 3 hours to heat chicken fingers and make mashed potatoes for the kids.  I think they ate at 9 p.m. that night.  She also asked every 20 minutes what else she could do for me.  I was out of my mind with delerium from the chemo and wasn't able to communicate well.  She lasted about a month before I gave up.

Maybe I'm asking too much?

Dreamwriter:  Wow, someone in my neck of the woods .  Maybe we could get together and have coffee.  Now that would help!

barbe1958

Cheryl, you're not asking too much! What you need is someone who doesn't need direction and can just run the house for you. That's not impossible! It must be hard to lie and look at the pile of laundry you can't put away....my heart aches for you. Does laundry really have to be done every day? (Buy more underwear!)

You just can't get good hired help these days......sigh.

Ah, as for the spa time, now you see what you're missing! I'd LOVE to have a massage every day. I think I could handle anything the world gave me if I could just get a daily massage......sigh.

I work in Vaughan, "the city above Toronto", hhehehehe. Maybe I can get some coffee too!

Fitztwins

Sometimes it feels good to just vent. If a helper is more trouble then what they are worth..it causes more stress! BTDT...

barbe1958

btdt?

dreamwriter

Mason, my friend, we really must meet and have coffee.  Now that I know you wont judge my dirty floors and I wont judge yours, it can be either house or Timmy's (I dont pay Starbucks $8 for a lousy coffee....._)

I am sorry about your woes.  Hopefully I will have a better experience and can then be able to tell you that it has improved.  So far the only things were a scooter  and drug care (which I got through CCAC) and am just setting myself up with CCEY.  I will let you know if they are any better.

I pm'd you my email and phone number... feel free to call me or send email.

barbe1958

Dream, will you give Mason a big hug from her Canadina sistah for me?  

luvtotravel

Cheryl

I feel exactly the same way about my kids.  They are under so much stress and pressure and do ten times the work around the home as their peers do.   They deserve to be kids sometimes.

You definately have had a rough time.  I have no answers for you but please know that you are doing a good job just by being there for your family and that they love you for it.

There are no easy solutions but you are doing very well under very stressful situations.   I wish we could all reach out and give you a big hug.......... 

dreamwriter

BTDT - I figured it out all by myself - Been There Done That

dreamwriter

If I meet Mason I will give her a hug for you barbe.....

mason204

Hi all:

Sorry for the delayed response.  Spent the last 5 days in hospital.  I guess all the stuff finally caught up with me.  Good news - prelim CT reports show my liver/lungs are stable.  Bad news, MRI shows more progression with my bone mets (hip an spine), hence the hospital visit.  Am starting radiation tomorrow.

Youngest daughter now has chicken pox.  As suspected, the cast she's wearing is making her miserable.  We also rushed her to an emerg. clinic yesterday to have a tooth pulled and she's taking antibiotics because of an infection.  No dentist would take her because of the chicken pox and they wanted her to suffer through the tooth infection for a week until she healed from the chicken pox.  I said "no way" and I took the bull by the horns and finally found a dentist who took her right away.  She's depressed (can't say I blame her) and is resting at home with me on the couch.

Dreamwriter:  I never did get your PM.  I'd be happy to "get out" and meet with you - there's nothing better than meeting a fresh face and having a few laughs. 

Oh, I did hook up with Hospice Toronto who have arranged some help for me on Monday and Tuesday.  I also have a handicapped sticker for my car so I can now run some short errands and not have to hobble back and forth to the car.  Little things do make a difference. 

Thanks so much for the support!

EWB

Mason- pallative care is often associated with hospice/end of life care but its much more than that! It is really about dealing with effects and side effects of treatments and the disease. Its about being more comfortable, managing pain, really improving QOL. If you google pallative care, should find places near you.

So glad you have help and the sticker--it often is little things that can help a lot!

One day at a time.

barbe1958

Cheryl, good to hear you're back! What were they able to do for you in the hospital? Why didn't they start rads then?

Your poor DD, what a double whammy!

dreamwriter

Mason - have pm'd so many times you are gonna think Im a stalker.... hahahah.  I do have a question for you.... so if you wouldnt mind emailing me ... I'll email you my phone number.... dreamwriter@sympatico.ca - note the CA.... not COM.  And I would love to have coffee with you... since you can drive and I have my scooter am thinking of the Timmy's on O'Connor and St. Clair.  We can talk more when you call.  Your poor daughter, I hope that the itching stops quickly.  Happy to see you got some help.  Maybe you could help me get a sticker, I should have one for when friends drive me.

I have to go to bed.  Bus is at 7:05 and Kathy's husband told her that they probably won't let me in with her... and I told her that oh yes they will.  She said if she asked him, he would argue and then no go anyways so she didnt ask him.  I still think he is a top notch A$$.

Good night all.

mke

I'm in Toronto too and I won't spend $8 for stupid Starbucks either.  Is there a Timmy's at O'Connor and St. Clair?  I only know Jawny Baker, which gives you a hint about my misspent youth (and middle age).  

Seriously if you want some help with your garden I will come with one or two of my grown sons and we will clean up your garden.   You can just sit there and give directions.  A soothing garden is good medicine.  I'm not that far away from you and can easily afford to spend a few hours helping a sister.

You have been enduring far more stress than is reasonable.  PM me.

barbe1958

Dream, thinking of you and your sister today. I KNOW they'll let you in! I pity the poor person who tries to stop you, hehehhee

Mason, you're getting help today too, right? Enjoy it! 

mason204

Dreamwriter:  I finally did get your PM and gave you a call at home.  I left my number on your answering machine.

Mke:  I've PM'd you and left my number if you'd like to call.  Perhaps we can all get together?

barbe1958:  I was supposed to get help tonight and was so looking forward to it.  Wouldn't you know, the caregiver called today and cancelled.  They can't find a replacement.  This is just so typical.

I spent the morning at the hospital and found out I start radiation tomorrow for 10 days.  I'm hopeful that it'll bring some relief from the pain.  My oncologist was great and explained everything well.  My hubby and I went for a quick lunch and had the best empanadas.  I know have heartburn but, boy, was it worth it!  Best meal I've had in weeks!

I'm feeling better emotionally.  I came to the realization that cancer won't kill me yet.  The spirits of evil are having such fun with my family right now that to kill me would end the suffering and that wouldn't be any fun.   

I have to say that the 4 of us are closer than ever.  We're one of those families where the harder the times, the more we stick together.  My hubby's been great and it's really getting me through this tough time.

VickiG

Cheryl you sound so much more optimistic today!  I am SO happy to hear it... you deserve a break!  I feel the same way about my husband & kids, too... they are what gets me through all of this, and we are definitely closer than any family we know.  We definitely appreciate each other more than most families seem to do.  Good luck starting rads, and hopefully this will give you some serious relief!  Hugs, Vicki

Fllorik

Good luck with radiation!

Family is the best!

dreamwriter

Good luck Cheryl, maybe those problems will work out for the short term.  I know that radiation is tiring but head up, shoulders back, you can do this.  And it is so worth it for the pain to go away.  But dont go planning the great house cleanup - the pain relief is not so you can kill yourself doing housework!

mke

Glad to hear you sounding better and hope the radiation helps.  I left a phone message.

barbe1958

Mason, did your help show up yet? Couldn't they have sent someone else if the first volunteer was ill? Just what you want, someone bringing you germs.....sigh.

dreamwriter

It was kinda funny Barbe... I got there late after being dropped off early.  Because I was in the wrong building.  Both buildings were part of the hospital.  So when I finally got to where I wanted to be.... it was after 9 and her appt was 9.  I was panicking.  Well I cleared the doors and the volunteer on the information desk ran over.... "She's on the 7th floor and she is waiting for you".  A dramatic entrance for sure.  The appointment went well.   oh look at the time.  Have to take meds for CT scan tomorrow.... will be back shortly.  Cant drink the lovely cocktail til 10:30.

barbe1958

Did you give her my hug? I give awfully BIG hugs...I am a good hugger. Did you? Did you? Did she hug you back?

Fitztwins

Mason, rads will kick those buggers! yeah on stable. Pooh on the cleaning help canceling. Handicap stickers rock!!

dreamwriter

Um... we didnt hug... yet... its a blossoming relationship.  However, I bumped into her and her hubby at the hospital today.  We conversed for a couple of seconds.  I was leaving and she was arriving and we both were STARVING.  I will give her the hug next time... we did TALK about you tho.