Posted by Lianne_adminCCS on Jan 15, 2020 4:20 pm
You certainly have a lot on your plate - any one of things - move, working, small children, can be challenging. Adding a cancer diagnosis on top of them I am sure must feel overwhelming.
I am glad you reached out here.. Finding a way to function day to day may be more challenging in these early days of the diagnosis. You may find you settle in to a routine at some point. That's not to say it will be easier but might be better able to foresee and plan.
You have heard from some excellent members already and I have no doubt you will hear from others that Brighty has tagged.
You will hear also to try to find time for you to get support as well. You are going to likely need support around you, as well as respite .
Take any offers of help and support. People will want to do something so handing out specific tasks helps you and makes them feel like they are doing something.
We have a group on here called Living with Advance cancer where you may find some useful discussions ( Groups > Living with advance cancer) . As well there is booklet for both you and your husband that lays out some ways to help navigate this. The link is here: http://www.cancer.ca/~/media/cancer.ca/CW/publications/Advanced%20cancer/32043-1-NO.pdf
Continue to reach out. We are listening
Posted by Cynthia Mac on Jan 16, 2020 9:04 am
You mention feeling lonely, so I assume your recent move was away from family, not toward them. I know you’ve got a lot going on, but I encourage you to find something to do - even just one thing - that is yours, and will get you away from “cancer world” for a few hours. It might be a once-a-week book club, or a once-a-month knitting guild, or even a bi-monthly mani-pedi, but I encourage you to find an “island” that you have just for you.
There is a community services locator, https://csl.cancer.ca/en where you an locate support services in your new home town. Also check with your local cancer society - most have resources like volunteer drivers to take your husband to and from treatment. If that’s not an option, there may be another service with volunteers who can help.
Please hold out hope. While every case of cancer is different, your husband’s medical team has tools that have improved with time and research. There are thousands of Canadians today living with stage 4 cancers. When my Dad’s metastasis was discovered last summer, I put a lot of plans (travel, home Reno, etc.) on hold. Six months later, we have a “routine” for his oncology and treatment appointments, and I’ve begun to make plans again. Dad’s treatments are working well for him, and I hope that your husband responds even better.
Whenever you can, make memories - Have your daughter’s birthday at her favourite restaurant, go tobogganing on the weekend, play board games. This disease is a reminder to us to seize every day we can. One of my favourite “Dad” memories has been going to Princess Auto to buy ramps for his utility trailer - just the two of us, puttering around a shop. They can all be good!
Welcome to Cancer Connection. As you can see, you’ve got lots of support (and enough ideas to last a while). Pop by whenever you can and let us know how things are going. You are definitely not alone.
PS: if you want to “tag” someone, type the @symbol right before the name, as I have done. After a few characters a drop down will appear on your screen, and you can choose the one you’re seeking.
Posted by Laika57 on May 26, 2020 8:55 pm
Makes me wonder how everyone is doing, yet I did not have the courage to read past page 4. Some of what was said hit very close to home, and I don't want a preview of what may be in store for myself.
my journey is pretty much documented in the pancreatic cancer sub forum here. Hubby was diagnosed, had a mental breakdown, chemo with complications and now we're sitting by our phones waiting to hear about a date for the surgery all the while expecting the doctors to change their minds yet again...
at the same time I am at my breaking point, debating leaving to save my own sanity. But unable to leave because the system is failing my husband terribly. I have been calling pretty much every member of his healthcare team trying to get him support. He needs daily help with his medications, and therapy to deal with his diagnosis, or anger issues related to it and possible dementia.
What's happening is pretty much the doctors treating me like an idiot for not being able to get him to take his meds consistently - as if explaining things to me 300 times will make my husband more inclined to listen. And my husband not having enough mental capacity to follow his own treatment (the other day he tried to take his mood stabilizers instead of tylenol - they're both red). And taking the resultant frustrations out in anger towards me.
Noone will return my calls. Or if they do, it's to say they will only deal with actual, physical illness and they can't force him to take his meds. (Yeah but make me feel inadequate for failing to do just that #$$^#^#).
The social workers and psychiatrists are ignoring my cries for help, I'm not the patient after all. I have a good mind to threaten either hurting myself or my husband just to provoke a reaction. I'm probably about two weeks away from actually meaning it when I say that.
like with his delirium in January, it would appear the diabetes nurse is the only one who listened and gave me actionable advice. Tomorrow I will call his GP and lay out the facts. Hubby says she didn't understand what help he needed, so I may have to spell it out. If all else fails, there's a mental health hotline. I really don't want to go there, it may jeopardize his eligibility for the whipple surgery. so i am saving that for Thursday (here's hoping SOMEONE will get back to me tomorrow.)
oh the joys of being a caregiver. Uphill battles with no support.
Posted by Brighty on May 26, 2020 9:15 pm
Posted by Laika57 on May 27, 2020 11:24 am
waiting to hear back from the psychiatrist. She's not working today.
the surgery is tentatively scheduled for June 8.
Posted by Essjay on May 27, 2020 3:04 pm
My sister has MS and she has terrible memory problems losing track of what day it is and when to take her medications. She loads all her pills into an organizer by day and time, but she still has to remember what day it is and track the time to take them. Her biggest fear has been taking two doses as some of her drugs could kill her in excess...
So she is using an app called Alexa by Amazon. It does all kind of things and she’s part of a test team for really useful things for disabled people like opening and shutting things, creating lists of things she needs to remember etc. But she uses this app to tell her when she needs to take medications and what to take. It’s an app on her smart phone. I have no idea how to use it for this, but maybe you can work it out between you...
We’ve actually got it set up for my parents too via one of those portal tools (echo), so mum can video chat with us. It’s saved our sanity during COVID to be honest. And she’s loving being able to turn her favourite radio channels on or off...
How are you doing? You made those calls yet?
Posted by Laika57 on May 27, 2020 5:54 pm
anyhow. Then hubby is like let's grab a coffee. So i get into the left turn lane. Oh wait, let's go to that other store first (across two lanes to the right.) I got upset. He turns on the plaintive voice "this is the only time I get to go out". Newsflash: the only time I get to go out is driving him places (even then i end up sitting in the car with the dog). Why? Because he threatened to call the police and say i stole the car. "But not if you ask first".
wtf. I will not be held hostage.
And, he tells me, his social worker said I had bad attitude. I know this is BS since I overheard the conversation....
i drove home, do not pass mcdonalds, do not collect coffee.
and until he apologizes, there will be no driving outside of medical appointments. And I will not be giving him his keys, and if he calls the cops, i will give them the keys and if they pass them on to him, they can take responsibility if he kills someone while driving with a suspended license.
one step forward and two back...
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