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Book Quote
"What is better: uncomfortable truth or comfortable lies? Every untruth is an unkindness, even if it makes others comfortable."
This has resonated with me. Think of the times we may have withheld truth because we are afraid of the impact it would have on our loved ones not thinking the impact it has on ourselves while we hold that truth.
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From the book entitled "Life is Messy" by Matthew Kelly:
"We cannot live without hope that things will change for the better, and we are not victims of our circumstances."
"There are some situations in life that need to be dealt with. They require action. There are other things in life we simply need to wait out."
How these statements ring true for us all....at some point along our journey. When we are first faced with something whether that be an initial diagnosis or treatment option, we feel like we are victims and the "why me" and "what next" and feelings of hopelessness and fear override our thoughts. It is a normal process and we slowly come out of it as our own process emerges and lets us "see the light" or "find our way" into more calming times where the thought process will start to clear and make way for a brighter outlook. We could very well see ourselves and paint ourselves as being the victims, in which a brief stop in this way of thinking is okay but to stay in it for long periods of time is unhealthy and requires some interventions to help us cope and get us through this phase. For some it is friend/family, others reading material, podcasts, support groups or medical intervention that help us. All good sources and after that dark phase passes we are usually able to see more clearly and that what we went through has helped us grow in other ways.
Definitely there are things that need to be dealt with and I recall doing some of those things to get them off my check list when I was encouraged to quit working altogether. Things like finishing things up for the business, applying for Disability Tax Credit, CPP Disability, double checking things are all good with our wills, life insurance etc. Anything and everything that was tangible and achievable to me at the time is what I set forth to do because I could. These helped to ease my mind for some reason. The other things I had no control over were what the cancer was doing, what was next and how I was feeling. I believe it is why we seek to control what we can and when we feel we can't that we feel stuck. The cancer journey is a long haul and has many ups and downs. It can also bring with it a clarity of what matters most in our lives and what we possibly thought mattered, really doesn't and possibly doesn't fit anymore. Some people don't 'fit' in my life anymore. I don't dwell on it but embrace the ones that have been here and stood by me through it all. It is those people who have been my anchor even when I have been at some of my worst emotionally, mentally and physically. Those that can weather through that and be patient with us, those are our anchors. We can't rush things despite wanting to and I find sometimes along that waiting period, something else unfolds that we thought might not even be an option or opportunity. These are the little nuggets I hold dear to. Re-uniting with family and strengthening some of those forgotten or "life is too busy bonds" and holding dear the hugs and love they provide for us. The constant waiting for appts is tough, but one never knows what will come to us between that waiting time. Be patient. Be kind. Be good to yourself. Above all, let your true self come through, those around you will adapt and be there the whole long while....just let them in.
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I am reading the book given out Tuesday evening when our local Hospice put on an event. It is entitled:
"Hope for the Best, Plan for the Rest" by Dr. Sammy Winemaker and Dr. Tsien Seow
Here are some excerpts from it that may encourage you to pick the book up yourself and help you on your journey as well:
"A life changing illness meets at least one of these criteria:
Chronic: in other words, it cannot be fully cured
Progressive: it will worsen over time
Life-limiting: it will shorten one's life
I have see patients feel tremendous obligation to stay positive or risk betraying the people supporting them.
Media headlines talk about celebrities "losing the battle to the disease." The implicit messages are that if you die from a disease. you didn't fight hard enough, and that you had a choice in succumbing to the illness. The implications is that the patient alone has the power to win or lose the battle.
One of the main reasons more providers and patients don't talk about preparing for the rest is that they worry that talking about different what-if scenarios, including the possibility of death, will rob people of hope and make them depressed and sad.
....excessive hopefulness can morph into toxic positivity.
It leads to denial and minimalization of reality while invalidating legitimate feelings such as grief or sadness.
Don't allow these pressures from well-intentioned friends or family, or in the doctor's office, to be barriers to you fully understanding your illness and where you are at in it.
Walking two roads is about exploring possibilities but not necessarily having a plan for every single possibility--just the one that seem more likely.
This requires an element of being brave and resourceful but allows you to be more resilient because you can stay a few steps ahead.
Hope naturally evolves over time when grounded in realistic information. When hope is recalibrated in this way, you have more control and more choices. You can prepare for what is ahead.
Some will find it unsettling to walk two roads. Each family is different. Not everyone will be able to or want to walk two roads throughout the journey, and this might change at different times.
Usually, someone will naturally take charge and step into this role. They will need to be brave in seeking realistic information that they may or may not share with the rest of the crew, depending on what each person wants to know.
Once you and your clinician have filled in the narrative around the beginning, middle and late chapters of your illness, it is important to understand how the storyline will affect your life. This means considering how the expected physical changes at each stage might impact your every day life.
Zooming out allows us to be sure we're attending to what's important to this person on their life journey, given that bigger picture.
When you go through things like this, all your personalities (meaning your team around you) get exaggerated because everyone's emotions are heightened., It's an extreme life situation. So all these things get dialed way up into overdrive.
Customizing your order is also about matching your overall treatment plans to what represents you as a person philosophically, spiritually, religiously and culturally.
Expressing what you value now, in the big picture of your illness, is critical to helping your inner crew understand the motivation behind your decisions and preferences. It is the context that will help them better appreciate your intentions and better support your decisions, even if they would not make the same ones.
I am half way through the book. There is also questions, thoughts and work sheets to help you through the book. It also gives helpful tips to discuss this type of thing with both your inner circle and your health care team. Sometimes, we are not the one who is leading this and it is a caregiver. It touches on the caregiver/inner crew perspective as well. For after all, we are a team in this journey.
Hope you find some of this useful and go seek out the book. It is by books like this that we can hopefully change the way the medical society as a whole treats and looks at us when we have diseases such as this. If they are uncomfortable with discussing it, someone has to as it is a reality in every one of our journeys.
This all ties in with our Teal Thursday chat 2 wks ago which was discussing quality vs quantity and what it means to you.1 -
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“Time is the longest distance between two places.” ― Tennessee Williams, The Glass Menagerie
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@Strongwoman reading through these posts tonight with my BFF has truly helped me feel better in so many ways. Been feeling super bummed out and anxious lately. I have started back riding my horses, but I am not what I once was. I feel defeated and angry at times, and need to hit the reset button and not be so hard on myself. I am only 4 1/2 months out from six rounds of chemotherapy, so who on earth do I think I am?! Lol. Small victories. Every time I get a twinge in my side, I think damn cancer is there just waiting to spread. But I shall seize the day and focus on what I can do rather than what I can’t. This is me back on for the first time since June 2023. I was scared. And then I cried. Deep breaths, keep on keeping on.
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@HorseGirl I am sorry to hear you are going through some tough emotions. You look great in your pic. Your smile is infectious. 😊
All I can say, is be patient with yourself. Our bodies go through a lot. I said when I practiced and even now to people, you have to think in relativity terms when expecting our bodies to heal etc. I tend to use the pregnancy analogy to make my point. It takes 10 months to be pregnant and you can very well expect the body to utilize the same amount of time to return to its normal point. That meaning hormones etc as well. When looking at healing from the disease, try to think of all the abuse it has taken, for how long, any short or long breaks between treatments/surgeries and calculate it all up. It will probably take as long to return to some sort of norm. Even when one is in a car accident, they never heal back to 100%. They may want to but it just doesn't work that way. We must come to terms with what the new norm is and be okay with it. We may not like it and mourn our former selves but the only way to propel forward is to embrace it in some way and forge ahead a bold new YOU! My family was telling me today that when they are talking with others after them telling them where I am at in my journey, they ask if I am in bed etc, My oldest son, says, "Oh no, she is busy and probably too busy at that". So, go ahead, go do what you can, ride that horse and one day or one week, you may just feel better riding it, go longer and enjoy it all. It definitely takes time. Be patient and kind to YOU!
I look at my gardens and know that I used to be able to tackle them all in a day. I have 5 of them. Well, I can only do one a day and be content with that. I also have to make sure I feel good that day. Same with washing/cleaning windows or anything. It is not the former me but I am still very happy I can still do it and by myself. That is what keeps me going. I like being independent and so often when we feel unwell we have to ask for help and it isn't always asking or accepting. It's grief……the loss of our former selves. Recognize it, feel it, write about it, cry about it, dance and move about it…..whatever and however it comes out…..let it. Heal and embrace the emerging new YOU!💕
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@Strongwoman thank you so much for your kind words. They are packed full of meaning and understanding, and really help me just get on with it. I feel stronger physically when I am not wallowing in grief. Most days I experience an improvement in my physical well-being, so that leads to expectations on my part. Therefore when my body doesn’t cooperate with this unrealistic agenda, I become frustrated. But today I danced! Was in and out for the bloodwork, and then carried on as normal. Rested when I needed to, and am spending the night at our cabin for the first time this year with my bestie. It was totally spontaneous, and that’s the beauty of it. I actually did a meditation practice today, and was surprised that it settled me down. I am thinking of you always, and I am so grateful for you.
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Sounds like you had a much needed time away with a bestie and spontaneous which is even better. I hope it helped @HorseGirl
Yes, this grief stuff ebbs and flows. Be patient with yourself. Yes, it is hard to not get discouraged with what we "used to do" and accept "what is". It comes with time. Glad you are getting some R & R.
I plan on having a nice weekend with the family with no plans in particular except to enjoy each other and the time we have together. No expectations = no disappointments. All I ask is that one of them make me eggs benedict Sunday morning which two of them know how to do and well. It is a safe food for me to boot which is great. Otherwise, I will basque in the fact that I was able to have these two wonderful boys who love their Mom very much.
Take care. I am off to my Hospice Day Group today. Maybe see you in the chat tomorrow.
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In saying that, we can't walk it for you but we can be here anytime you need and walk beside you as you navigate the difficulties of the journey ahead of you. You are never alone. 💕
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@Strongwoman wishing you a lovely Mother’s Day with your family. 🌸💕
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Aww thank you so much @HorseGirl
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Not a book quote but something I though fitting with the theme of the other posts and truly…..who can't use a HUG somedays????
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These words ring true for all those with ovarian cancer. As I’m approaching the one year anniversary of my debulking surgery and subsequent chemotherapy and immunotherapy, I swing from feeling sad and scared to downright peeved. There’s a sense of urgency to DO what I can while I still can because nothing lasts. @Strongwoman I know that the path you’ve been on has been rough and rocky, and yet here you are…lifting up others, finding meaning in simple things, and continuing to demonstrate grace in spite of everything. Sending you hugs and love.
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Thank you! @HorseGirl every day brings us new challenges and emotions. Why they surface when they do and what we do with them is what matters. We can't always have "up" days and the "down" days are sure to surface. Let them come and take it a day at a time. Finding ways to keep busy in a constructive way can help not only mentally but physically as well. It is a way to help fill in the gaps in the day and to find ways to be productive that we feel we have accomplished something. Big or small it doesn't matter. Some days it is interacting with friends or family that help one get through the day and find some meaning. Laughter and finding a way to put a smile on one's face helps too. Experiencing the emotions that you have been are normal. I am swinging from feelings of happiness that I am not in pain abdominally to wondering when the shoe is going to fall. It is hard to stay in the moment all the time and to not let the mind wander down that path that can be like a rabbit hole. You will find your way and no matter what you do on any given day, no it doesn't last but you did it and tomorrow is another day to be filled with whatever it will be filled with. Be kind to yourself and give yourself grace. Time does heal but sometimes it takes longer than we think at times. Hang in there and know you are not alone. 🤗💗
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