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Support for Spouses/Partners

Support for Spouses/Partners

Posted by Lacey_adminCCS on Dec 22, 2016 11:38 am

I've started this discussion for all the caring spouses/partners of people with cancer that we have on the site. This is a place to connect for ongoing support and discussion.


Please introduce yourself and share your challenges and coping tips.

Re: Support for Spouses/Partners

Posted by rainbowpromise on Dec 22, 2016 2:59 pm

I'm here and so much in need of discussion with others.

My name is Annette, but I answer to all kinds of names.
  • Mom - we have 5 children, the youngest two about to turn 31 in a couple of days (Christmas Eve)
  • Grandma - we have 3 grandchildren ages 20, 4 and 2.
  • Omma - Our oldest daughter has a habit of introducing her friend's children to me. The second of these children knows me as Omma
  • Airtrenat ______________ (still working on the last name) is my chosen SCA name. My persona is a 10th century woman born to Celt/Norse parents and living on an island north of Scotland.
  • Nettie is a pet name given to me by my friends.
  • Rainbow or Rainbowpromise are online names chosen because of a longstanding fascination with rainbows, Noah's ark, and it was the name given to me by my Beaver Scouts group back in 1990.
This round of cancer is not my first rodeo and this round of caregiving is not even my fifth bronco ride.

I am on the seventh year of caregiving. Between my mom, myself, and now my husband, I am stretched.

Since we bought our current vehicle, which is a 2007, these are the runs I have made:
  • 2008 - painting my Mom's bedroom - Kootenays
  • 2009 - Mom's vein treatments - Kelowna
  • 2010 - Mom's knee surgery - Trail
  • 2011 - Mom's galbladder surgery - Trail
  • 2012 - Granddaughter born premature - Lower Mainland, Mom's knee surgery - Trail (these were back to back)
  • 2014 - Grandson born premature - Lower Mainland, Me - heart attack - Lower Mainland
  • 2015/2016 - Mom had breast cancer - 6 hour drive to her house - 3 hour drive to Kelowna Cancer agency
  • August 2016 - took my husband in to hospital in A-fib
  • Sept 2016 - mass found in lung
  • Oct 2016 - confirmed early cancer, emphysema, ongoing A-fib
  • Nov 2016 - Surgery likely, last scan/test to be done at the end of Nov. (ha)
  • Dec 2016 - Spot found in colon, original lung mass confirmed as inoperable stage 1, brain scan set for Dec 29
  • Jan 2017 - Colonoscopy scheduled to confirm
BOTTOM LINE -
I am tired of doctors that don't tell you what they are thinking. They write it in the report and leave it for the next doctor to break it to you.
I am also tired of my mom trying to find more medical reasons for me to go to her. I have a husband in dire need right now.

I know, probably too much information, but I am ready to explode with frustration. Thankfully I have managed to keep my blood pressure level. It will never do for the caregiver to need care.

Re: Support for Spouses/Partners

Posted by sguido on Dec 22, 2016 10:23 pm

Hello all,

It seems that cancer has been invading my life in one way or the other my entire life.  Lost my mother at 12, my grandfather a dozen years later, and my grandmother two years ago.

And now my wife and her father are fighting the same rare type at the same time.

My wife beat cancer as a child, losing an eye to retinoblastoma, with a risk of secondary cancers later in life.  We were fortunate.  Then comes 2016.  Hysterectomy for fibroids found one of them cancerous, but she was clear of the disease for three, then six months.  

Then it returned, aggressive and inoperable.  First type of chemo did not work, and she went through two weeks in the hospital dealing with a still unexplained fever.  (So much for insurance coverage paying the bill...my Christmas gift was to pay $900.  How hospitals can charge double what insurance companies cover is absurd, but what can one do?)

She is now on a second type of chemo that wipes her out, and her father has been moved to a palliative care centre.  She's devastated that she can't help him as much as her sisters do, but the truth is she needs to take care of herself.

Me...I'm pushing through all this as best I can.  I received a permanent disability in the line of duty and have the joy of living in constant pain.  Didn't learn from that, continued to work for the government, and survived a few more incidents that left me with PTSD.  I know,..if it weren't for bad luck I wouldn't have any.

I will offer any advice I can, but be warned that as a sci-fi nerd (as defined by my wife) I may draw from the pop culture well a few times.

As for the user name...well. Back when I went through flight school call signs weren't checked for political correctness.  I found my flights marked as S.Guido.

You can call me Sam, though.  Or sguido.  Whatever works.

My first bit of advice...make memories while you can.  However you can.  Right now, the memories of swimming in the Pacific, towing my wife in her inslatable donut (she can't swim), keep my spirit light. (More advice: don't watch Shark Week before going swimming in the Pacific...)
 

Re: Support for Spouses/Partners

Posted by lauracf on Dec 23, 2016 6:26 pm

We're about two years post-diagnosis, with my partner of 35 years battling what we thought was stage 3 rectal cancer.  The diagnosis came JUST as we had sold our home and bought another in a small town, for retirement. At least the move kept our minds busy. 

Early  last year he had chemo and radiation for 6 weeks, followed by a difficult, 5 1/2 hour surgery, followed by 6 months of chemotherapy that actually went on longer because of a hospitalization.

When the chemo ended in February we began what we thought was our new  life in our new home town. Five months later we were devastated to hear that somehow a small tumour on the sacrum had been missed in the initial diagnosis stage.

We're now waiting,,,and waiting...and waiting...and still waiting to hear whether he will be having what could be life-prolonging surgery. We're trying not to let it get to us, but I wonder if doctors truly understand that people who have a life-threatening or terminal illness need communication from their medical team?  We need to have our calls returned. We need to know what comes next.  We need to make informed choices, and we can't do that in the absence of information. Lack of communication causes added stress to the lives of people who probably already have unbearable stress in their lives.

It doesn't make for a very happy holiday season for us, that's for sure. 

Re: Support for Spouses/Partners

Posted by LianaJane on Dec 26, 2016 12:30 am

Dear lauracf ... I hope you and your partner found some happiness during the holiday season. My husband and I met late in life and have just celebrated our 10th wedding anniversary last spring. For most of our married life we cared for others: my son and my mother. We nursed my mother through her final days. She died as she wished - in our home, in her own bed, in my arms. My son graduated shortly after that and got a job in another city. Both of us had health issues finally resolved and decided it was time to live our dream. We put our house on the market and 4 weeks later we moved into a beautiful old farmhouse, a real fixer-upper, on 2 acres of land and 250' of sandy beach on the ocean in PEI. All summer long, we pinched ourselves... we couldn't believe how fortunate we were. Then in October, during major renovations to our old farmhouse, my husband was diagnosed with lung cancer... just 6 months after our move... far from family and friends. In July, my husband had surgery in Halifax and both the surgeon and oncologist announced he was cancer free and in remission. Four weeks ago, his check-up showed the cancer is back and spreading rapidly. We have found the hurry up and wait, and wait, and wait is both scary and frustrating. I'm physically handicapped. My husband and I are a team... we do everything together and love each other dearly. I'm on a emotional roller coaster. I wish there was an eject button. My husband has other medical problems which make chemo and radiation undesireable. His cancer is inoperable. I've just started a new business which he insists I continue. Two days before Christmas our new stove quit working. New parts have been ordered and will be here in January. Christmas dinner was a challenge, as is cooking every meal. I'm a Celiac with multiple allergies and we live way out in the country. Going out for meals is not an option..Some days my head feels like it's going to implode. I'm tired of being an adult. I hope 2017 will be better... but the odds are not in our favour. 

Re: Support for Spouses/Partners

Posted by LindaFrizell on Dec 26, 2016 8:39 am

I hope that everyone was able to have as good a Christmas as they could. This year has lacked the joy that comes with anticiapation and family closeness in previous years. We muddled through as usual during this difficult time. My husband was cured of oral cancer a few years ago only to have it reappear in his lungs. The prognosis is grim to say the least. He also has other challenges with his health including parkensons and hypo-thyroidism. He is doing poorly (mostly sleeping) I'm not sure which health issue is actually affecting him the most. 
Right now I'm having difficulty deciding if I should quit my part time job. I work as cashier very close to home.I know that there will come a time when I will needed at home full time. He can look after himself for the most part with a bit of assistance from me. I would like to keep working for a bit longer but I don't want to put him at risk of having a health issue while I'm away.
 

Re: Support for Spouses/Partners

Posted by lauracf on Dec 26, 2016 12:12 pm

We moved to a small town a couple of years ago, and so we didn't feel obligated to do the whole Christmas/New Year's thing with friends and family and to live up to everyone else's expectations. We just stayed at home and relaxed together.  Because we were able to relax we really enjoyed ourselves. Instead of the huge family deal we had a turkey breast for two.  Instead of a big party we watched a movie.  Neither of us got exhausted.  It was a good time, uinder the circumstances.

Re: Support for Spouses/Partners

Posted by sguido on Jan 9, 2017 4:35 pm

This post isn't a cry for help...it's more of a scream of frustration.  A brutal, primal howl of rage.  So I apologize in advance if my rant is incoherent.

My father in law passed away today from the same rare cancer my wife is battling.  

Today is a chemo day, so my wife should be going home to rest...especially since she gets that ridiculously expensive shot that needs to be refrigerated until tomorrow.  Avoid people who are sick...that whole regimen. So we can avoid another two week stay in the hospital with fever and me fearing she wasn't going to make it to the next day.

But no.  Her sisters insist that everybody go to their place.  "No," I say.  "Why doesn't the immediate family just come to our place so your sister can get her rest?" I know they're not sick, since we've all spent the past few days in hospice.

They've already invited other people over to their place to grieve, so no.

i get people grieve in their own ways.  But if a family member is sick, press pause on tradition and the way you usually did things.  Consider the person who is sick and what is best for them.  I get you've lost somebody...but do you want to lose another because you didn't think of what 'the usual way' might do to them?


 

Re: Support for Spouses/Partners

Posted by Lacey_adminCCS on Jan 9, 2017 5:02 pm

Sguido,

My condolences to you and your wife.

It's completely understandable that you're worried about your wife's health. The fear of losing her may feel even stronger after just losing your father in law to the same cancer. Such a tough situation for you. I hope your wife takes your feelings into consideration, and takes your advice so she doesn't over do it and put herself at risk in the coming days. Sometimes when we are grieving we don't always think straight, yet I can understand why she would want to be around family right now.

I hope you guys are able to find a balance where she can be supported and grieve, without worrying you too much and without getting sick.

Thinking of you, please feel free to rant anytime,
Lacey

Re: Support for Spouses/Partners

Posted by Charro on Jan 10, 2017 12:13 pm

Hi I am Charro:
I posted my rant a week ago.
It really is a roller coaster and it is SOOO difficult watching your spouse get weaker by the
day.  
After reading the above posts it really puts life into perspective doesn't it.
#1 - There is always someone out there worse off than we are
#2 - I have learned try not to react to their anger and frustration.  That doesn't help
       help you or them. I think that is why my blood pressure weent totally out of whack!!!
#3-  Enjoy each and every moment you have together.  It could be your last one.
#4-  Do what you feel is right.  You know your spouse better than anyone else

Thank you for the opportunity to vent and good luck to all of you.

Re: Support for Spouses/Partners

Posted by Lyle on Jan 11, 2017 5:39 pm

This a quick version of my cancer experience. I'm 61. You can read my introduction under my alias Masterblast. Dec. 3 2016 collapsed in my doctors office and ambulance to the hospital with blood clots which saddled my lungs. Lucky to be alive! Dec. 5 2016 I found out I had colin cancer stage 4 which spread to my liver and spots on my lungs. Spent 36 days in the hospital enduring two operations which the first failed removing some of my colin and reattaching to my small intestine. After 5 days of being septic, emergency surgery to fix, stabilize and add a colostomy bag. Lost 48 pounds. Hell of a way to lose weight. Endured 5 1/2 months of chemo which worked to reduce tumours some what. Didn't handle chemo very well. I am one of the few people that can't handle the chemo drugs. So talking to my oncologist I decided quality of life was more important than suffering terribly from the effects of chemo drugs. I'm pretty self aware of my condition and end of my life. So I'm going to enjoy what time I have left

Re: Support for Spouses/Partners

Posted by Lady C on Jan 12, 2017 6:25 pm

Lyle:
This a quick version of my cancer experience. I'm 61. You can read my introduction under my alias Masterblast. Dec. 3 2016 collapsed in my doctors office and ambulance to the hospital with blood clots which saddled my lungs. Lucky to be alive! Dec. 5 2016 I found out I had colin cancer stage 4 which spread to my liver and spots on my lungs. Spent 36 days in the hospital enduring two operations which the first failed removing some of my colin and reattaching to my small intestine. After 5 days of being septic, emergency surgery to fix, stabilize and add a colostomy bag. Lost 48 pounds. Hell of a way to lose weight. Endured 5 1/2 months of chemo which worked to reduce tumours some what. Didn't handle chemo very well. I am one of the few people that can't handle the chemo drugs. So talking to my oncologist I decided quality of life was more important than suffering terribly from the effects of chemo drugs. I'm pretty self aware of my condition and end of my life. So I'm going to enjoy what time I have left

Hi Lyle,  I'm so sorry about your diagnosis and for the difficult time that you've gone through in the past and continue to go through - you must be such a strong person to go through what you've been through. I really don't know what to say other than, I'm sorry.  It's your life and you have to decide to do what is best for you; so if that's your decision, I hope you enjoy every single moment of the time you have left. Cancer is so ugly, but there is also an amazing amount of beauty in the world.  I hope you spend your days absorbing all the beauty and find some peace.  If you ever need someone to talk to, or just want to unload, please don't hesitate to message me.  I'll be thinking of you. Hugs.

Cathy
 

Re: Support for Spouses/Partners

Posted by MarySR on Jan 12, 2017 7:43 pm

Hi
I am new here and needing a little support, I guess. My husband was diagnosed with prostate cancer late last spring. "It's going to be fine" we were told. Survival rate is good. But, it has been bad news upon bad news. Seems like he is drawing the short straw on everything. Everyone keeps telling us "oh, if you are going to have cancer, this is the type to get". Except...not in his case as every test comes back with bad news. His PSA doubled over a few weeks, his gleason and staging were upgraded following surgery (or is it downgraded when its bad). The only hope is if, following surgery, his PSA is zero. And, even then, he is almost certain to relapse given the gleason, lympho-vascular invasion etc. He took early retirement a couple of years ago, so it is up to me to support the family financially and help our school aged children through this. Denial is his strategy. He has delayed and delayed finding out the results of his PSA test. I know that it is his cancer, but being in an emotional waiting room is really hard for me. I'm sure that he just expects it to be bad news again and doesn't want to deal with it. But...it's hard. 

Re: Support for Spouses/Partners

Posted by jorola on Jan 13, 2017 5:09 pm

Marysr,

Reading your story is like reading my dad's story. I mean to the tee. And as his daughter, talking about it or getting any info is like pulling a wisdom tooth with tweezers. Men especially have a hard time talking about anything but i find especially about this type of cancer. I mean it is in "that area." But your right, this does not help out the women, you and most women, involved who need to know NOW! Does he have a good buddy that you can talk to that will talk to him if he won't talk to you? Or is that crossing a line for your hubby? You might just have to give him time and he will call to get the results. My dad did, but took a week or two. Just needed to mentally prepare himself i think. What can you do in the mean time? Have a hobby? Have something you love to do? Do it - lots of it and just keep busy. I know that is not miracle advice but I am afraid that is all I have. I am hear to listen though.

Jodie

Re: Support for Spouses/Partners

Posted by rainbowpromise on Jan 13, 2017 10:30 pm

MarySR,

I know where you are coming from. Every time you think you have this stupid disease figured out, another test, another bad result. I'm right there with you and its frustrating.
My husband only has stage one and yet we are on orders to go to ER if his symptoms get worse. I have been in that waiting room since August 19, at first with feelings of anger and revenge, then with just plain old tiredness, and now with resignation that there seems to be no end.
I have to journal my feelings later. Which is all I can really advise. Come here often, talk with others. We all know that there are no easy answers, but there is support.

Annette

Re: Support for Spouses/Partners

Posted by MarySR on Jan 14, 2017 1:42 pm

I want to thank you all for your support. It is brutal being the one who watches and waits. My husband doesn't have a friend to talk to-- a bit of a lone wolf. (Was incredibly close to a brother who passed away last year.) My job in terms of supporting him seems to be his researcher. I analyze the pathology report and tables for him etc. Dispense information when he asks for it. It feels at times that he wants me to carry the burden of knowledge for him. That's OK, I guess. I do it because i'm a 'need to know' person, but also because it is what he wants me to do for him. OK.....But hard. Keeps me up at night. 

Any advice on helping children? My youngest has a friend whose mother passed last year from cancer, so she sees his diagnosis as particularly dire. My oldest just moved away to university in another province and I am trying to keep her from feeling guilty about being away and having fun. She is seeing a counsellor on campus who is really good for her, but I think she feels that she should be there for ME even more than for her father. I'm careful not to turn to her for too much support, so as to not make her feel responsible for me...... I'm trying to keep some fun happening in my life, but between being the bread winner and the kids, I'm kind of struggling with that. Maybe when things get settled into a horrible drudgery of waiting for test results over a longer period, I will find a routine that includes something for me. It really helps, BTW, to hear "I've been there too". A surprising amount actually.....

Re: Support for Spouses/Partners

Posted by jorola on Jan 14, 2017 8:17 pm

I can only tell you what we did with our kids. They were 22 (female), 20 (male) and 16 (male) at the time. We are also a combined family too. My husband was diagnosed in April 2014 and was told he only had a 10% chance of making it to the end of the year by the radiologist and the oncologist believed he could save him. With such varying stories, we told the them the truth - we did not know and told them exactly what we were told. We hid nothing from them. We talked about it, answered questions the best we could. We talked about it anytime they wanted to discuss it. We had to approach it 3 different ways as they are 3 very different kids. We offered counseling as well. Was it right? Was it wrong? I don't know but I personally don't  like to try to hide things from kids. They are smart. They figure things out. They over hear things even when you think they are out of ear shot. They don't appreciate not being told and I think them not know lets their imagination and fears make things worse. Well, that's my opinion anyway.

Re: Support for Spouses/Partners

Posted by determined on Jan 16, 2017 10:16 am

I am sorry for your loss and totally understand your frustration. Unfortunately he is gone, but you need to do what you can to keep your wife well. She is lucky to have you. People need to understand that it is not important what others think......you know your truth in this situation. It's sad if they don't have the compassion to get it. Lucky them they are well. Use your strength for you and your family.....let her sisters handle the rest. Her parents should understand having fought the same fight. Good luck

Re: Support for Spouses/Partners

Posted by rainbowpromise on Jan 24, 2017 3:21 pm

The next level of stress and overbooking -
Now I am at the beginning of tests for cancer.

I am still taking regular calls for appointments and rescheduled appointments for my husband and now I had something come up that causes my gp to suspect uterine cancer.

So now my schedule is crazy.

26th - morning blood work for husband - afternoon pelvic scan for me
27th - morning GP weigh in for husband and double check my status

Early Feb
  • husband sees surgeon (1 hour drive)
  • I see a gynocologist (local)
  • husband sees oncologist (next town over)
My biggest fear is that I can't handle it all. All of my kids are working. Out of the three drivers one is dealing with her own medical issues and three kids, another is working 2 full time jobs, and the last doesn't need an excuse to miss work.

I know it will work out, I just needed to vent a bit.

Re: Support for Spouses/Partners

Posted by Lacey_adminCCS on Jan 24, 2017 3:42 pm

Oh Annette,

I'm sorry to hear the news :( I hope it turns out to be nothing, but I'm glad your having it investigated.

Remind me where you are residing again?

Thinking about you,
Lacey

Re: Support for Spouses/Partners

Posted by rainbowpromise on Jan 25, 2017 2:44 pm

BC, Lower Mainland. So no mountain passes or winter driving. Although with my husband so far we have been everywhere between Vancouver and Abbotsford with me doing all the driving. We live very much out of the way (farmland) and I have an 84 year old friend trying to get handi-dart and not succeeding. She has medical issues.

I feel like everything is okay. In the past I have relied on feelings a lot. So far I have been right in every instance. It just seems like there is more going on than needs to right now.
Annette

Re: Support for Spouses/Partners

Posted by jorola on Jan 30, 2017 6:39 pm

Hey Annette,

Just wanted to say hi and hope your appointments went ok.

Jodie

Re: Support for Spouses/Partners

Posted by rainbowpromise on Feb 22, 2017 1:10 am

Hi Jodie,

I am sitting here with a cup of herbal tea and just chilling.
At least that is on the outside.

My husband begins treatment (finally) on March 1. He will have 4 very intense doses of radiation. Then we go about the testing to find out if it worked. We were told that if he had surgery for his stage 1 tumor, he might not have sufficient breathing ability to sustain him after the surgery.
However, if the radiation doesn't work, they will do surgery anyway.
I don't want to question what will happen then.

I had a biopsy done on Valentine's day. I get the results on March 2. Worst case scenario for me is uterine cancer. If caught early things should go well. I have done well with previous surgeries. The hardest part will be recovery while caring for my husband. But I will face that when it comes.
Apparently people love me enough to help me out.

Thanks for asking and sorry I was MIA for a while.
Annette

Re: Support for Spouses/Partners

Posted by jorola on Feb 22, 2017 5:50 pm

No worries about being MIA but glad to hear from you Annette!

Not sure if you mentioned where hubby's tumor was but if it is near the esophagus you might want to read this 

Sure hope you don't have anything. But hey I sailed through my hysterectomy and very sure you would too. It was the MRSA super bug infection I got from the hospital that got me run down. Stupid hospital. 

How's the writting going? Still waiting on edge for more LOL.

Jodie

Re: Support for Spouses/Partners

Posted by rainbowpromise on Feb 24, 2017 10:38 pm

Jodie,

Good news. We went to the GP today for my husband's weekly check on other health issues. While there he pulled my file and gave the good news. No cancer for me. I will probably still need a hysterectomy but not on an emergency basis.

My husband's tumor is in the lower left lung. Most of his symptoms stem from the COPD and heart. In fact if it hadn't been for them we would not have found the cancer until it was too late.
Sometimes blessing come through pain.

Annette

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