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New Members-say hello

Re: New Members-say hello

Posted by Apple73 on Oct 17, 2020 11:25 pm

Thank you Wendy Tea and Elsie13 for your comments.  We will look into it.

Essjay, thank you for your comment.  We will call Pharmacare to find out whether they would exclude me for pre-existing conditions.  It's a difficult decision, treatment or family's future life.
 

Re: New Members-say hello

Posted by Kuching on Oct 18, 2020 9:13 am

Apple73‍ , you have some tough decisions to make.  Here is a page from Pharmacare on the Manitoba government website.

Also, and this is going to sound silly but it works - try flipping a coin, heads for Japan, tails for Manitoba.  Not so you can decide what to do, but to find out what you really WANT to do.  For instance, if it comes up tails, do you feel relieved or disappointed?  Sometimes it can tell you a lot about what’s going on in your subconscious!

Pharmacare Deductible Estimator

The Pharmacare deductible for the 2020/2021 benefit year is calculated as follows:

  • The total income is determined from line 150* of your 2018 Canada Revenue Agency (CRA) Notice of Assessment.
  • The applicant's total income is added to the total income of a spouse (if applicable). 
  • *If you and your spouse elected to split pension income, the line 150 amount is reduced by the split pension amount indicated on line 210 to ensure the pension income transferred is not included twice in a family's total income. 
  • $3,000.00 is subtracted from the total income for a spouse and each dependant under the age of 18 years. This amount equals to the Adjusted Total Family Income. 
  • The Adjusted Total Family Income is multiplied by the corresponding percentage rate in the chart below to determine the Pharmacare deductible. 

Please note:  The minimum deductible for Pharmacare is $100. Once the deductible is met, Pharmacare will pay 100% of eligible prescription drug expenses.

Adjusted Total Family Income

Pharmacare Deductible Rate 

          $0 - $15,000
$15,001 - $21,000
$21,001 - $22,000
$22,001 - $23,000
$23,001 - $24,000
$24,001 - $25,000
$25,001 - $26,000
$26,001 - $27,000
$27,001 - $28,000
$28,001 - $29,000
$29,001 - $40,000
$40,001 - $42,500
$42,501 - $45,000
$45,001 - $47,500
$47,501 - $75,000
$75,001 and greater

3.17 %
4.49 %
4.53 %
4.61 %
4.67 %
4.72 %
4.79 %
4.84 %
4.90 %
4.94 %
4.97 %

Re: New Members-say hello

Posted by JustJan on Oct 18, 2020 10:22 am

IlaE‍,
First of all I am sorry that you find yourself here but this group is very supportive as you are already experiencing.

I was diagnosed with Stage 1 triple negative breast cancer in January 2019 at the age of 59. I had a lumpectomy and was referred to the oncologist after my post op visit to discuss chemo. I will say I was a little shocked and to be honest chemo was my biggest fear of a cancer diagnosis. I did meet with the oncologist and she said that chemotherapy was being offered as an insurance policy. When I looked at my life expectancy (based on a chart) it was 80 without chemo or 82 with chemo. I decided not to do chemo as I didn’t think it was worth it. A baseline CT scan she ordered showed an ovarian mass and I was diagnosed with ovarian cancer as well, also stage 1. I ended up having to do chemo anyway but the chemo would work for both types of cancer. I will say chemo was not nearly as bad as I had imagined but definitely not a walk in the park.  My genetic testing fast tracked and I was found to be BRCA1 positive. Because I am BRCA1 positive, I will be having a prophylactic bilateral mastectomy in about a year from now when I am done my maintenance therapy for the ovarian cancer. If you happen to get your genetic testing results before your surgery and you turn out to be positive for a gene mutation, you may want to reconsider your surgical option to prevent further surgery down the road. 

You are doing a great job advocating for yourself and getting as much information as possible to help you make the decisions for your treatment plan. 

I wish you all the best as you tackle the road ahead. 

 
Strength doesn't come from what you can do, it comes from overcoming the things you once thought you couldn't. - Rikki Rogers

Re: New Members-say hello

Posted by worried daughter on Oct 18, 2020 11:54 pm

Hi there
After a year and a half of tests, my 81 yr old mother has been diagnosed with stage 4 Non Hodgkin's Lymphma (follicular). She is not your average 81 yr old! Still works full time hours and never stops. My parents live with me in their in-law suite/house. I am the one who takes her to the appointments and makes sure she follows the dr's orders. Next month she starts her oncology treatment with Bendamustine and Rituximab. Her treatment is the first 2 days of the month for 6 months. Hoping to find out info on this treatment and what we can expect. 

Re: New Members-say hello

Posted by SueZQ on Oct 19, 2020 2:26 pm

Hi, I've just been diagnosed Invasive Ductal Carcinoma. My first appointment with the surgeon is on Thursday, so I don't yet have all the results from the biopsy. Doing alot of research to keep me occupied while I play the waiting game....

Re: New Members-say hello

Posted by Essjay on Oct 20, 2020 7:47 am

SueZQ‍ hi there (love your username BTW)...

Its a whirlwind getting diagnosed and then it’s hurry up and wait. Wait for appointments, wait for results etc.

I remember my surgery consult very well. I was shocked at being given the choice between a lumpectomy and a mastectomy and needing to choose there and then...

You will be asked all kinds of questions about your medical and family history, and they will tell you what they know about your cancer from the biopsy. The surgeon will go through your options - lumpectomy plus radiation gives as good a chance of saying goodbye to cancer as a mastectomy. A mastectomy is a much more complex surgery, and reconstruction takes multiple surgeries.

But they will give you a chance to ask questions - I had a notebook of them. I sat down the night before with my husband and we wrote our own. We had questions about the surgery - what the surgeon would do, and recovery afterwards. I’m an active person so I wanted to know how long before I could get back to the gym. And time off work. 

I had lots of questions about what happened after surgery, but my surgeon only really knew about the surgery not chemo or any other treatment.

Have you found the breast forum yet - lots of discussions about treatments specific to breast cancer. You are among friends here. Women (and a couple of men) who have had all kinds of treatment, in all different stages, and they will chime in and help with any questions.

Where are you being treated?

How are you doing now the diagnosis is sinking in?

best wishes, Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: New Members-say hello

Posted by SueZQ on Oct 20, 2020 11:15 pm

thank you for the welcome, and the information. 
My anxiety is way up, but I've been distracted somewhat, recovering from the biopsy. Still hurting. 
I'm going to Newmarket. I'm told they have a great cancer unit.

Hanging in,
Sue

Re: New Members-say hello

Posted by Apple73 on Oct 22, 2020 5:28 am

Kuching, Thank you for your comment.  I'm leaning to moving back to Manitoba.  Here, I just bought a house, it's a house.  The house in Manitoba, I call it a home.  Selling the house and moving is a lot of work but I can get involved, better than my husband doing all alone.

Re: New Members-say hello

Posted by IlaE on Oct 22, 2020 11:22 am

JustJan‍ 
Hello Jan, 
Thank you so much for your note and for sharing your story. 
Thinking we were going with surgery first, we paid for private genetics testing so we would have that information and all came back clear. Now that we've switched to chemo first, that information wasn't as urgent but we're still glad to know.
I didn't really have a choice about chemo. It was part of the cure plan whether I went with surgery first or not. Where I feel I have choice is with surgery options and radiation. Every fibre in my body screams no to radiation. Thankfully we are not at a point where that's a decision we have to make yet. I find it interesting how so many people have opinions about radiation and feel "that's the easy part." But they're bystanders - not dealing with a cancer diagnosis, chemo or radiation or all of the other lovely things we're dealing with on a day to day basis. It makes me want to scream there's nothing easy about any of this!!!!!!
I'm through round one of chemo, on day 8 today. Taking it one day at a time and thanks to good advice from Essjay‍, have been moving every day. It snowed here in Calgary a few days ago, but I just bundle up and take it easy. I took this week off of work, but plan to work next week (I'm self employed) at reduced hours. I need to keep my mind active. I'm also assuming by the time chemo is done, I'll have organized every square inch of my house.  
My husband is starting a temp job the first week of November and won't be able to take me to my next chemo appt. I asked my sister to take me - she's the oldest, I'm the baby. She's fiercely protective in a grumpy, crotchety-sweet kind of way. I offered her the option of just dropping me off and not coming in with me. I don't think she wants to see me with the IV in my hand, receiving treatment. Honestly I don't blame her - it's not a pleasant memory to have etched into your brain.  Curious about what others have done for their appointments? had someone stay with you or gone on your own? the treatment I'm receiving requires the nurse to manually push two of the meds - so she's with me for about an hour. Then the remaining hour or so I'd be on my own. 
Wow, covered a lot today - didn't realize I was percolating on all this and, so thankful for you all and the support of this community. Thanks for creating a space for all of us to share. 

If any of you are on Instagram, I've been posting almost every day. You can find me @ilaedgar

A current fav:
I've read that being a mom means whispering WTF to yourself daily.
Ok, first of all .... I didn't know we were supposed to be whispering it.

Happy Thursday everyone!!
oxoxo


 

Re: New Members-say hello

Posted by lja on Oct 22, 2020 8:29 pm

Hello.  My husband has been diagnosed with esophageal cancer.  He starts treatments in 2 weeks.  I'm really frightened.  I'm doing my best to learn as much as possible as fast as possible.  The waiting period was nerve-wracking and now that we're here he really just wants to get started.  I'm not sure what else to say, we have  no kids, just a little cat who is giving and getting extra cuddles these days...
 

Re: New Members-say hello

Posted by Brighty on Oct 22, 2020 9:18 pm

lja‍ my heart is breaking for you.  My fiance  had esophgeal  cancer  and I was terrified  too.      Do you know what stage the cancer is?   I am around to walk beside you through this and answer any questions  you may have.     This is a supportive  community.  
Help is out there. All you have to do is reach out.

Re: New Members-say hello

Posted by Essjay on Oct 22, 2020 9:18 pm

Hi lja‍ welcome to this friendly community. You are among friends who will help you and your husband find your way through this.

sorry to hear about your husband. It’s tough seeing someone we love struggling with illness and facing unpleasant treatment. 

I see you have found the Digestive cancers forum and have posted there, hopefully you will meet other patients and caregivers who have experience with similar issues.

i would like to introduce you to Brighty‍ who has caregiving experience for a partner with oesophageal cancer, and she may have some advice for you.

As a caregiver, I encourage you to take care of yourself, and ensure you have some time away from cancer, and do things for you. You need the mental and physical relief however you find it. When I was having treatment, my partner used to go camping with a friend which gave him a break, and the friend was really good at getting him to talk to get his feelings out which really helped him cope.

The nursing staff, the psychosocial workers at your cancer centre will be great resources for you and they will answer any questions you have. They are there to support you as well as your husband.

and you can always call the CCS information line on 1-888-939-3333 where there are highly trained staff who can answer your questions and help you find resources and assistance.

best wishes Essjay
Triple Negative Breast Cancer survivor since July 2018

Re: New Members-say hello

Posted by Maidenldy on Oct 23, 2020 6:59 am

Hi, I am Michele and mom to 5 kids, a dog, caregiver from Ottawa and hold a full time job.  My 27 yr old daughter was diagnosed a year ago with brain cancer.  Over the year she has had many complications including 9 craniotomies, 3 brain infections, a muscle graft, a shunt placed, 2 1/2 months inpatient in the hospital, 2 separate rounds of radiation, 6 wks rehab at the Brain Injury unit, left side hemi-paralysis and on going Chemo as well as the tumor diagnosis changing from Glioma to Glioblastoma. Through out all of this, she has remained positive and fighting hard.  

Her life and our life has changed dramatically over the last year.  She has gone from living independently with her boyfriend, working part time jobs and going to university to now not being able to work and needing help to do even the most basic things like getting dressed and not being able to live independently.  Most recently she made the decision to move back home with us for a period of time to have more support on regaining mobility as it has decreased recently due to post radiation and long term steroid use.  

We are all so thankful to have her thriving and smiling each and every day.  Not all days are good and there are lots of tears of frustration for all of us but we try to find something good in it even if it is something silly.  The mere fact that she is still here a year later after all of this is truly a miracle and that we are ever so incredibly thankful for.

She is truly a warrior and someone I am in awe of in how she is tackling each and every obstacle.

Michele

Re: New Members-say hello

Posted by Brighty on Oct 23, 2020 7:27 am

Maidenldy‍  welcome to the sight.    You have been through so much and my heart goes out to you.    There was another  member who logged on recently a caregiver to someone with giloblastoma  who you might be able to connect  with .but it slips my mind who.   Lacey_Moderator‍  do you remember  who ot was?  Thsnk you.    You can also call our info line at 1 888 939 3333 for resources and support.     Glad you found us and we will be here to support you every step of tbe way.     
Help is out there. All you have to do is reach out.

Re: New Members-say hello

Posted by Lacey_Moderator on Oct 23, 2020 9:23 am

Maidenldy‍ 

Thank you for sharing with us about your remarkable daughter! It has not been an easy year for any of you. I'm glad you found our community.

Members with experience with glioblastoma are Orlando‍, NewFamily‍ , stephanie41‍, Patti1234‍ , CarlieCA‍. I hope they will share a bit about their experience with you.

I'd also like to introduce you to Trillium‍ who is a caregiver to her son. I think you both will connect around the experience of having an adult child with cancer.

Wishing your daughter continued recovery and strength,

Lacey

Re: New Members-say hello

Posted by Trillium on Oct 23, 2020 11:32 am

Maidenldy‍ - So glad you joined us but I am so sorry your family and daughter has been through so much in just this last year.  My adult son is now 40 and lost his ability to be independent suddenly at the age of 17, before he was able to learn the skills of being an adult. He spent the last year recovering well from testicular cancer and lost his dad to cancer in his brain about 4 yrs ago now. It is such a struggle to maintain balance between what he needs help with and what he can do on his own. He is still not as well as he was before cancer but we just take one day at a time and enjoy it best we can while he goes through his recovery. It has certainly brought us closer as a family.

How do you manage to get through your day with working as well? I had always found working to be a good way for me to maintain normalcy in my life.

Hugs to your family
Judy

Re: New Members-say hello

Posted by Cynthia Mac on Oct 24, 2020 8:40 am

Maidenldy‍ , thank you for coming to the site and sharing your story. I’m going to tag CentralAB‍ , who was caregiver for his late wife. He has many inspiring posts on this site about her journey, and the things he did to make her final days special. I just tried to look up a couple of the discussion threads, but was unsuccessful.

Your daughter sounds like an incredible young woman, and that is a credit to her parents. 
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: New Members-say hello

Posted by CentralAB on Oct 24, 2020 11:53 am

Hello lja‍ Thank you for dropping in and sharing your story. Im so sorry that you have to go through all this trial & waiting. It sounds like your husband is very blessed to have you by his side, and we here at CCC want to be here for you in whatever ways we can. I was a caregiver for my wife for 5 years and would be happy to offer any insights I gleaned from that experience with you as you request it. The nice thing about this place is it is open 24/7, and often, us night owls on the forum will see your message even in the middle of the night. 😀

I found a few topics that might be of interest for you and your situation. If these give you even one idea to ease your burden, then mission accomplished:

1/ How Are All The Caregivers Doing?
2/ Esophageal Cancer Surgery Success
3/ Make Everyday Special

Please let us know anytime you need to discuss any aspect of being a caregiver. We are here for you.

lja:
Hello.  My husband has been diagnosed with esophageal cancer.  He starts treatments in 2 weeks.  I'm really frightened.  I'm doing my best to learn as much as possible as fast as possible.  The waiting period was nerve-wracking and now that we're here he really just wants to get started.  I'm not sure what else to say, we have  no kids, just a little cat who is giving and getting extra cuddles these days...
 

 
________________ "there is always a little Light"

Re: New Members-say hello

Posted by Whitelilies on Oct 24, 2020 5:40 pm

Maidenldy‍ Hi Michele
Welcome to our caring site....filled with those who "get it"....and wish to offer support and their experiences too.
You are a busy mamma! And I agree, your daughter sounds like a fighter. Moving back home is smart, like a "win-win".....good for her and good for you.....
Keep sharing....we are listening.

Regards
Whitelilies

Lillian