Showing posts with label caregiving. Show all posts
Showing posts with label caregiving. Show all posts

Friday, April 23, 2021

When In Sickness and in Health, Really Matters


In sickness and in health really does say it all! Michelle has fulfilled this marriage vow every step of the way along this life journey we are on. She is the one person who and has been there with me from day one. When we were challenged and moving from good health and life plans, to facing symptoms, all the scans and tests, the big "c" diagnosis,  the radiation, cycles of chemo,  up to my current clinical trial participation, she has been there for me in every possible way. As I wrote in My Michelle, she is the most important person in my life.  

Luckily my current level of care can best be described as minimal in terms of the physical needs as I am fully able to function and support myself in most areas. At least for now anyways! But a burden of care is not just care of sickness and nursing and medicine, it's all the other stuff, the living, the worrying, the supporting of me and our children, and the coping too. Michelle, has been there to provide my with much needed emotional support. This is an area that medicine & treatments can't address. She checks in on me throughout the day to see how I am doing and always tries to lift my spirits. One positive of the COVID pandemic is that she has been able to work from home 100%, so we are always home together.  I know how difficult it must be to remain positive herself, to have high spirits all the time and keep our family going in the right direction. It is a constant worry for her. I know that she often feels helpless and perhaps feels that there is really nothing she can do, but she is doing more than she knows. It means the world to me to have her by my side and to know that she is there for our children. She tries her best to ensure that I am comfortable by providing me with anything that I may need or want (she bakes great pies, LOL!). She is simple amazing! I am not sure how she keeps it all going really.

She is my champion, my advocate and my number one cheerleader. I know that this is not an easy thing to do when your own emotional state must be verging on despair at times.  I know that she is secretly researching and reviewing other trials and treatments in hopes of finding a new path forward that may lead to some more positive results.  Michelle does this work unselfishly (while maybe selfishly hoping for more time). She does it with love, care and compassion. I recognize the toll that this is all taking on her. 

Who cares for the caregivers?

Being a caregiver to a cancer patient is not a 9-5 job. It is 24/7, day and night job. There is no rest or respite for caregivers. This is a role that they did not ask for or ever wanted,  but regardless they take on this almost invisible role with determination and with a sense of purpose. Michelle does this each day with care and compassion.  I try not to be a burden for her and hope that she realizes how much she means to me. Michelle thank goodness I have you in my life.  

It hits me, this is when in sickness and health, really tests you, and really matters.

All my love to you Michelle X0X0

Richard

Health Update: I have now graduated from the 18th floor- Clinical trials space to the Chemo "Daycare" for treatment on the 4th floor at the hospital. Who would have thought that I would be in daycare at my age! LOL. I actually wish that I did not have to move floors! The 18th floor, although busy was nothing like my experience on the 4th floor this week. As always, I continue to be shocked by how many people are dealing with cancer and cancer treatments.  There are so many people and treatments underway, that  you have to take a number and then wait in a large, busy, socially distanced waiting room to be called to let you know which location to go to when it is your turn for treatment. I had to wait 2 hours past my appointment start time before a chair became available. I have been told that there are over one hundred chemo chairs on the floor and they are divided into stations or centres by colour. I was in the purple suite this week. Your actual chemo chair space is not much bigger than a small closet. You can forget about privacy. You are in close proximity to others that is for sure. Thank goodness for my headphones and laptop to keep me distracted and entertained, and what did we do before cell phones and texting to keep in touch.  But truly, I am  thankful that there is a chair and a space for me!




Friday, March 12, 2021

In my Shoes

This week's blog comes courtesy of My Michelle. Enjoy!

Every once in a while, Richard asks me to contribute to his weekly blog.  I'm always honoured that he asks me, but equally a little reticent.  I am by nature, a private person, and very protective of our family, but I know that those of you who follow his blog either know him personally and care about him,  are struggling with your own troubles or travelling your own cancer journey and find his words and perspective inspiring.  As you know, while Richard has been doing well,  his cancer has continued to progress and we have made the decision to move into a clinical trial.  A decision that was not made lightly, or easily, but made with hope.

Why is hope so important? Other than the obvious of wishing for a different outcome, I think that hope is important because it encourages that little self narrative that helps make our current situation a little more bearable.  We have to believe and keep doing something.  It's just how Richard and I are "wired".  I also think it's a self protection mechanism as well, because the alternative is to despair, and there is no sense wasting time there!  That's also how Richard and I are "wired", we definitely like to get things done, not waste time and definitely do not like a pity party.

But despite what you "think" and "do" and "hope", sometimes your worries will manifest anyway.  I have trouble sleeping, I can't help it, I can't fix it, it has just become my new way of managing.  I do feel a strong responsibility to help smooth the way to help ensure that Richard has everything he needs to be as comfortable as possible, help find those distractions that are so important to help him keep coping, to find time to ease the fears and concerns of our children at this time when they are also trying to launch and find their way.  I am a nurse and somewhat knowledgable in navigating the healthcare system and able to have the key conversations with his caregivers and I take on this responsibility.  Like caregivers who find themselves in this kind of situation, I do feel the pressure, but  I also wouldn't have it any other way.  He's my Richard, and I bear the responsibility with love.

We were walking a great deal before the snow, ice and winter slowed us down, and we look forward to getting outside more, to get walking. I know that these things all help to tire one out (in a good way), help with getting a good sleep and help with a more positive mood. It seems like it has been a long, cold winter and we are very looking forward to spring, to some warmer weather and sunshine, time together in our gardens and kicking back by the pool.

I started off this blog with the title "In my Shoes" with the intent to share just a few things from the caregiver perspective and dealing with this cancer journey.  I think the title should really be "In Our Shoes" because we are not in this alone - not Richard, not me, Jon, Josh or Sophie - there's a whole extended family and community here with us, and we are grateful for the support.

Wishing you a good night!

Love Michelle