Thank you for your support and kindness, always. I have some very difficult and down days, as we all do. I try and not look at myself as different than anyone else, but that’s denial. It’s sometimes helpful to pretend to get through a rough patch in the road. Sometimes I know no one else would notice the pretense and I am just kidding myself. Ahh the things I do to cope.
I dislike the saying “one day at a time”, but it’s true for everyone.
I am not a warrior nor do I have super powers, just in case I have misinformed you, it’s just sometimes I have to pretend I can do this or that and I will get through a tough time.
Recently, meh, I have been distracted from my usual coping techniques, from some reality checks, maybe that’s it. IDK
I’m not sure, maybe it’s depression. I don’t usually focus on what I can’t do, maybe I actually do, or negative events, other people’s lives that aren’t going well. But I have been thinking about the young 14 year old who has covid and is very sick. I have had contact with my nephews and they have made plans and are doing what they feel is best for them regarding their inheritance. They have loving and fun memories of their dad and they respected and admired him. They said that will never leave them. I’m very grateful they are able to carry forward with love in their hearts. But I feel grateful for you and have a longing? for what was?
We, my husband and I, had a video appointment/discussion about the path moving forward with the oncologist. Since that meeting I have been doing very little— napping a lot and I am not being truthful with my husband when he asks if something is wrong, because I am resting with my eyes open.
One new neuro symptom is if I move my eyes too quickly, whatever that is on a given day, I feel very dizzy and lightheaded— like my eyes could or would roll back if I...let go??? and... I don’t really know what, it’s an uneasy feeling and scary. I don’t want to close my eyes. Foolish thinking, but at least I know it is foolish.
I’m scared. I feel uneasy especially when my heart races. And thinking about the amazing family, friends and life experiences I have had makes me cry a little tear and I stare time away. I don’t have time to stare away or to wonder or feel scared over some minor symptoms—- what’s a few more. Seriously what is? Gads I am going to try and switch my mindset and move forward with a better approach and attitude, cuz I’m not liking this at all. An attitude adjustment is needed when chocolate, gelato, playing an instrument or dancing isn’t working. Huh. Hmm
Good grief I have been blessed— fortunate.
lol HaHa...“have a blessed day”... a long time ago I was in Atlanta to have a surgery. Everyone said “have a blessed day” blessed here blessed everywhere and everything. It was so new to me and sometimes I didn’t feel it was genuine. I recall I was having a blood draw and I asked the technician what was with saying “blessed” so often. She said that sometimes it was a polite way to disguise f you. I’m not from Atlanta and have no ill feelings for Atlanta or the south or about that saying, it was funny she said that. Maybe she was pulling my leg. Maybe? Maybe she was thinking f- you. lol
@karuna I was speaking theoretically about when and if I will be at the point of needing a hospice. At the time it seemed very possible, doc said as little as 30% chance of living 5 years. But I got a recent cat scan showing clean so my odds just got better. It may be years and may not be from cancer or might be next 5 minutes. But yes, if there is no hope of recovery, if there is uncontrolled pain and discomfort, if I'm no longer able to enjoy life and its just biting the bullet putting up with misery, then yes I will end it myself.
We would put an animal out of its misery, why are humans supposed to suffer and not get any relief? I think it should be up to the individual. You mentioned the possibility of miscalculating and becoming a vegetable. Yes that could happen and perhaps still feel pain but not able to do even the little you could before and no longer having the option of ending it. But that is a mere technical difficulty. By that time I would have my stockpile of narcotics, I would have started using them and would have a clear idea of what is a max tolerable dose so 10x that or however much is left, maybe 100x should do the job nicely. Plus there are tables that give ld50 to give you a good idea. Or tie a plastic bag over the head, there are many ways. What was that song 50 ways to ...
I know this is not a pleasant topic, we don't want to think of having to make such a decision. We imagine we will live a full, happy, and long life then pass away in our sleep or something. I think even having severe nausea and no hope of recovering from that would be enough to have to decide let alone pain. Its an individual decision, is life worth living, does one have goals they are still working toward or is it just x number of horrible months and then finally the end?
"I’m not interested in letting go, although the pain and so many other symptoms are more uncomfortable to straight out beyond beyond."
I think holding on and letting go are important processes. They are more philosophical than physical. I through meditation and belief system am in favor of letting go. Letting go of possessions, people, ideas, the body, and life itself. When we try to desperately hold onto something we become dependent on it be it a job, money, health, etc. Those things are all worth keeping its the difference between holding on desperately, telling ourselves we must never lose that person or thing or simply enjoying what we have but holding it loosely and letting it go if need be. Yoga, buddhism, and many teachings tell us attachment leads to unhappiness
By mentally letting go I no longer rejoice when I make a lot of money or grieve when I lose it. OK maybe some but I get over it. I have already let go mentally and emotionally, I will work to keep what I need and give away the rest. I have a ways to go in my own self about being able to let go but coming face to face with with severe illness takes it out of the theoretical 'maybe one of these days' realm into the here and now.
Its totally true that we need to enjoy life while we have it and are well. Too many of us live in the well worn rut, we put off until "someday" having a good time. Its not good being a wastrel and ignoring responsibilities but too stingy or too much self denial is no good either
Too much rambling, time to go. I wish you well and hope you find relief and peace
I don’t know if sharing my feelings about what you responded is necessary. Except to say I’m very happy you got a clear scan. That’s fantastic! I’m very happy for you and confident in your determination and ability to be prepared when decide you can not or do not wish to continue.
I have a thorough understanding of Buddhism and “attachment”. I feel comfortable and confident in my knowledge of the religion and I also respect your right to express yourself. Somewhere in my thread I posted my history of being raised with a thorough understanding of living with religions and non religion. My father was a theologian and also studied having a belief that was not based in religion and living life without any belief. This was a gift he shared with us. Love was central in living with and understanding and respecting others.
Thank you for your input and I hope you have continued good health, and peace.
I have confidence in my ability to feel peace where I am, while at the same time be open about the process, how it feels, how I respond to it, this journey and the many meaningful experiences, relationships I have had and will have.
I had meetings with both the surgical oncologist and the oncologist this week. The oncologist is the lead. The surgical oncologist and oncologist disagree with each other. He feels a minor procedure and a short hospital stay would provide me with a good deal of pain relief. The oncologist would like me to begin IV pain management.
I understand it’s my decision to make and they will go with that. The problem I’m having is they want an answer. I have not decided. I may tomorrow, but not today.
I have days or weeks when I feel better or worse, when I’m comfortable with the plan of care and times I’m not. I have days or weeks I don’t want to let go and that’s not unhealthy, it’s going through a necessary and healthy process.
I would think most would understand and agree that living and the dying are a process. A healthy process for most. Not easy for many. It’s an expedition to uncover how your body and mind are coping and look over options and check in with feelings.
My journey, anyone’s journey, is a long and winding road that takes you to territory unknown. With every new bend in the road, you see a different landscape. One curve and you see a grassy knoll, others you see steep inclines to blue skies and some look level and aren’t; a few steps and you have stepped over a cliff.
Note to self: Do not give energy to anyone who can’t back up what they say with facts. I’m so over it. This has nothing to do with my doctors. Some people think they know it all, even going so far as to misrepresent truth and disregard science/facts.
I’ve been given a choice to have surgery or begin IV pain medication. I’m not set on one over the other or to do nothing. I can see the benefit from either-from surgery with pain meds after and then depending on the pain level after surgery, after my skull heals, then continue a pain medication that’s needed until I expire. I ran this idea by my husband and put a call out to both oncologists. I know both of them were interested in moving on this soon, which made me wonder if they have a vacation planned. ;p joking. I left a message for both. They’re busy, so I will be patient.
My husband is concerned about infection-acquiring covid or MERSA in the hospital, the surgery won’t be effective, I could die during the surgery or after, would the pain management I receive be strong enough but allow me to continue to engage in my life and I would be alone during this because my husband can’t be in the hospital.
I have had all of the same concerns. I’m willing to have one more surgery - bore hole surgery to clamp whatever can be and relieve pressure, although a scull piece removal which leaves me with the flap healing, is more effective. Would I have an agreement to also give me enough pain medication, more than Tylenol or tramadol —Damn, zags — as I was typing that, I realized pain medication is complicated because I have allergies. Will the pain medication I receive keep me in sleep mode or will I be able to function and engage. Sighing......
Ok, no sighing... I am in control of this decision and can decide which one or do nothing will be best. I lost hours yesterday from severe pain and not being able to treat it, BUT I am here, in much less pain and I am alive.
Pain doesn’t kill you, I don’t think so, unless it’s too much and your body can’t take it. Hmm...Do have a heart attack? What actually happens? You can’t enjoy life or engage because of the pain, so livethe rest of your life in severe pain? OR you kill yourself.
I don’t know the answers.
Hmm I should write these questions down to ask the doctors. After all of this time why am I not clear about this ??!!! Sometimes my mind isn’t 100%. Have you noticed.
Bugger! Don’t we all deserve an easy pzy day? 2020 has not been good. Maybe it will end well.
Hi Karuna, u r a brave soul, I’ve told u this many times. I think u know wot u want to do but r scared of telling people cos it’s not what they want u to do. My dms r always open if u need advice on what exactly to ask your doctors. I have a good bedside manner but I will not sugar coat anything if u so wish, in regards to whatever u decide to do. We never know how strong we really r until faced with these moments. U have handled things with such dignity and grace, it’s inspiring to say the least.
You are right that I would like to make the final stretch as easy as I can for everyone especially for my husband and I am trying to be accommodating and accepting that doctors know more than I do. I would like more time. Covid and my physical limitations has been a challenge, but minor actually. I’ve been so fortunate. Everyone must agree with that, yes?
Honestly, I can’t type through tears. You are right, Rom.
I still am willing to fight, to give my all because I know the end is coming and that makes me feel many feelings.
I’m not brave, no. If I were, I would know what I want, go for it and be myself through to the end. I’m clinging, hoping, wishing, pleading, so hard you would think I believe there is a magic wand and I just have to find it.
I have learned so much about myself sharing and everyone has been supportive, helpful, caring and kind. I am the one who has benefited without a doubt.
If I have left your name off, it wasn’t intentional. I edited this post today to thank you and share my changing position. I am tired and I don’t have too much fight left in me.
I realize I’m not at peace with losing my life and how this process makes me feel. Having many different thoughts and feelings are part of getting closer to acceptance and exhaling. I hope.
As of today :-/ ? I have decided I will not have any additional surgeries. I will have to be stronger than I've been to accept. I will not begin the IV pain medication until I absolutely can’t cope with the pain. I anticipate a lot of meditation, deep breathing and chocolate. I’ve made this decision because I really don’t want to sleep life away when I could see the loving face of my husband. It’s pretty straight forward from here. It’s an odd strange place it is. I don’t recommend it, so stay healthy.
I’m working at finding my way. I’ve lost my smile. My hope is I will find that too. (sorry @notcharlotte) I want to wake up saying it’s a new day- like my husband does. I hope he is as happy without me. Now, I’m feeling better that I made this decision, but a little stressed too.
I’m grateful for the many kind, sincere, understanding, supportive and informed members who have joined me on my journey. You all have helped and encouraged me, helped me see what I could not see and had an impact on my life in ways you will never know. (((Hugs))) I hope you all care for yourself as well as you cared for me. I do wish I could repay you for standing next to me, holding me up and giving me information and nudges. I love, admire and respect all of you. You have your own life challenges and you've taken time from your life to give to me. I hope your pain, your anxiety and struggles in your life ease. I hope the USPS returns to on time deliveries and the pain management doctors ease up and treat you like the addicts you are—JOKING. Treat you with respect and see you as the strong, resilient human beings you are.
Thank you isn’t enough. I’ll come up with the words, I promise you that.
I am so grateful for your advice and I agree with every piece you gave me. It makes sense. I decided, at this point, to not take the pain medication offered to me for as long as I can. I’m already weak from, hmmm I don’t know what’s making me feel weaker. Can pain do that, or is it the damage to my brain or just the spread of the cancer? Any thoughts?
I nap but I don’t sleep during the nap. I feel loopy when I get up. I don’t like that feeling.
On a pain chart I rate my pain at a 9 in my head and an 8 in my body. My heartache is a 10. Rapid heart rate and sometimes very slow and sometimes feels like it flutters. That must be when my husband holds me lol
If I could walk a straight line I would take a long walk outside. I’d love to walk and sit in the rain. Looking at sky is always interesting. The sky is permanent but the clouds change. I do check out the flowers and birds and how much damage the chipmunks and squirrels have done ;p. Pesky little things they can be.
Alright I’m not wanting to say ‘see ya’, so I ramble.
(Be strong karuna.) I’ll see you if I can. Be well and stay healthy and enjoy your life. Until then....
My mind is still open and my heart still feels compassion.
I don't know what to say that hasn't already been said by people who can put it so much better so I'll stick to the simple things:
I'm thinking of you.
I'm amazed and grateful that you've spent some of your precious time sharing your story with us.
There really are no words to truly describe what it means to have another person so totally with and for you while you go through this.
"I realize I’m not at peace with losing my life and how this process makes me feel. Having many different thoughts and feelings are part of getting closer to acceptance and exhaling. I hope." makes me really sad to read. So too, " I’ve lost my smile".
"My mind is still open and my heart still feels compassion." should be the aim of humanity.
Hi @karuna I love to watch the clouds in the sky, to my mind I like to imagine some other force of nature of which even scientists and doctors like myself r as yet still unaware of, is making those shapes for us and it’s not just us that anthropomorphise the clouds. There r some anti-vertigo meds that can make u feel much better after your naps, so run that past your physician, there r a few to chose from so there will be at least one u can take that won’t interfere with whatever other meds u r on. And naps r important, especially if u r only gonna take opiate pain meds when u feel u go by a 10 on the chart. Also naps and meds and short walks and visits, i found in my short time in palliative care, were a great way of giving the day structure for a patient. Which I found strange at first but makes so much sense to me now. Anyway I’m waffling. I’ll hear from u soon I’m sure
There really is little left to say. I understand and appreciate that. I’m not asking for too many answers or sharing too much more because, in part, what more can be said. But you did say you are thinking of me and that will always help me feel better. Thank you.
For me, this has been both an amazing experience receiving support, suggestions and guidance from other members. As you said— “There really are no words to truly describe what it means to have another person so totally with and for you while you go through this.” It has been, trish. I never thought I would find so many friends here. It’s been so heartwarming. It carries me through my day.
I’m sorry you felt sad reading what I wrote. I’m not as happy as I have been, but I still feel joy. I’m declining so I don’t smile as much because it’s not a happy feeling and I'm not as cool with it as I could be. I’ve lost much relating to the cancer but I still smile and find joy. Just yesterday, I saw a rainbow. Today it was raining. My husband asked me to come outside. I was in my bathrobe and went out in the rain. It was a warm day, a warm rain and I got wet. I smiled.
I saw a rainbow and stood in the warm rain. You see trish, life is good it’s just the dying part that sucks.