Canadians in British Columbia
Comments
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hi, everyone
Thanks for the info on the meditation. I will definitely check it out once I am done with chemo. Really looking for something to help me with sleep and maybe will power or discipline. always have my mind racing thinking about work or stuff when I am supposed to resting and sleep. My friend asked me to try Taichi before bed, but I dont have the discipline.
THanks!!
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Thanks, wrenn
I tried sleep with calming music before didn't work. my issue is I follow every little sound, rain drops are enough to keep me up. Also trying really hard to have no electronics or gadgets in my bedroom as i always end up playing with it.
I am taking time off so work is less on my mind but still have hard time with sleep. So open to try anything that can help me switch off.
Most of the time, I don’t feel anxious or feel any different, I just feel awake. The later it is the more awake I am. So often feels like I am going blanks with non forming thoughts jumping from one to another or blank thoughts but still awake.
The radiation oncology nurse gave me a one pager about sleep that actually says you should get up do stuff if you couldn’t sleep after 30 in bed. ?! I tried, didn’t work.
Thanks for your tips and ideas
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If anyone is looking for online or podcasts of guided meditations, I really like Tara Brach's.
I subscribe to her podcast & get a daily downloand but I usually pick one based on length of session or topic, rather than just the one that drops that day. But I like having the large library and as I scroll through, I find I often just land on what I need to hear. Some of the podcasts are called Reflections & that's more her talking about something than a guided meditation but even those are very meditative.
On her website she also has a section for those new to meditation. https://www.tarabrach.com/guided-meditations/Sleep is my one super power. It's rare for me to not be able to sleep and the odd times I've had a bit of wakefulness in the middle of the night (often after a 3 am hotflash & pee break), I just listen to an audio book for a bit & then I fall back asleep....
Meditation during the day has IMO lasting effects - often for days, as I don't always maintain a daily habit.0 -
Those doing virtual study. I’m on week one and the “cart on the tracks” is giving me motion sickness a bit. I thought we have to sit but if laying down helps I’ll try that.
Sorry to the rest of you that aren’t in the study it’s fun and engaging and helpful to lessen my pain. I find it so hot though. I think the computer is throwing heat and I get a sweaty headin about 15 min. This morn I did it early with window open and that was way better.
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Moth , Just tried the Tara site you gave link to. It was nice.
Question. the MBRS course at cancer Center we took, did you get the CD or link called BODY SCAN? Because I think they were the ones that gave it to me and I've used it on and off for years. It's meditative. I have it on my mp3 player. I took course in 2004/05? Some time after chemo rads
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Yes I got a CD of bodyscan but did it come from there? Rusty memory. Sorry I'm an old dog.
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Lol. Well ok if we both think the same thing then I’m going with that because two bad brains are better than none!
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wrenn
I just watched the short film about Callanish retreat. I have been the website before after you mentioned here, but didn’t watch the video. Man, I have to tell you, I am gald my husband was upstairs napping because I was watching and sobbing in silence. I am not someone who cries much if at all especially in front of people, but go crazy teary over movies at times. It was such a beautiful film, I am now definitely hooked to join the retreat.
I am like you, don’t like drugs and worry about dependency. I figure I am my own source of problem, so meditation might be a good way to help me to learn how to relax my mind.
Moth
I Was just wondering how you are as haven’t seen your post for a short while. :-)
Thanks for sharing the link. Her voice is quite soothing, I listen to a clip on the site, will try it again.
Now I wish I can have the whole house just to myself, so I can play it in the house without thinking what my husband’s reaction might be or him running away to an different room. Hmm, what would be a good excuse to kick my husband out of house for a day or two so I can have the whole place to myself. :-)
Thanks ladies. Great tips and insights. Much app
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NVDobie - I was in hospital till Mon (5 days/4 nights) with another round of febrile neutropenia. AC going out with a bang lol.
Was supposed to start 12x taxol today but got a one week holiday for my counts to hopefully get a big higher - yay. Get to play with the new pup instead. Finalizing adoption this weekend
I like Tara Brach a lot. I watched the Callanish video a while back - you're right, very moving. The retreat doesn't speak to me right now but who knows ...it's good to know it's there.0 -
Moth . Oh that’s terrible news. When we are trying to hard to get better and then kicked in the teeth....we’ll your just going to have to have that weeks rest and get right back at it. We’re here for you!
Puppies are fun and I know it will lift your health and spirits. What kind? I guess it doesn’t mater ALL puppies are wonderful. Watch your slippers and pick up families underwear. They love those smells. One of ours ate the crotch right out and left the rest! The other pup got really smart because because she ate the encyclopedias. Quite a few of them. She was our Bookreader
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It is an older pup - 8 month old black lab x something (maybe greyhound).
We have an older English Setter already. I still miss my other two - a malamute x which died last year, and a newfie x which died the year before...
She is in the naughty teenager phase. Silly adolescent high jinx. Very sweet tempered but her previous owners didn't give her much structure or brain work so she's a bit wild. I think she might be a good agility prospect once she learns some impulse control.
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Wrenn, did you notice the mediation week if MBSR? I could tell from every time he mentioned the raisin!
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Moth - thinking of you and wishing you well this week:-)
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Hi all;
I wanted to let you know my right side Mx and SNB is sked'd for this Tues. I decided to undergo 2 stage reconstruction. The second surgery will address any symmetry issues w the L side. Please keep your fingers crossed for me.
With thanks for all you support over the last 2 months. I would've been so much harder without you all. I had no sense of the excruciating waiting involved
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Wrenn the Obduction game made me motionsick a bit once I got into the cart driving with the lazer beam, that was today and I told Gordon today that I layed down and just watched the clouds go by, that helped. He way ok with that.
Monday I start meditation video which I had a peek at and was a bit dizzy but got over it. I told my friend who has whole body nerve pain(RSD disease) and he said he uses an airplane simulator to keep his pain away but it comes back as soon as he finishes the game. He also learned cake decorating to distract his pain. I would think ginger to be helpful.
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Best wishes for your surgery BlueSky!
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Bluesky. Thinking of you. We'll be in your back pocket tomorrow. Let us know how you did as soon as your up to it. Have a few things that you will need ready by bedside. Water jug, books, meds,robe, underwear socks for easy donning. Lots of pillows handy. Flushable Baby wipes might make things easier for tidying up down under. Someone mentioned that they put two sheets on and peel off after a few days top one revealing cleaner bottom. Chicken noodle soup packages are easy digestion with a egg whipped in while cooking it. Simple but good go to protein. This will get you started.
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hugz4u, Moth, Wrenn, Marian, Dobie and all:
Thank you! Am enjoying a cup of coffee, listening to the birdies chirp and about to attack my stacks of books and other detritus in my room, bathroom, and pack for overnight. Am headed on a drugstore run later w list in hand, will add your item to my list along with some glamorous stool softeners
Your support has made this infinitely easier. I thank you all from the bottom of my heart, xo
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Will be thinking of you BlueSky. Keep thinking of the birdies and the blossoms to keep you calm. Warmest wishes for your recovery.
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Moth
Hope things are improving for you every day.
I spent two nights in ER myself in the last few days. Delayed allergic reaction to chemo as i am told. swollen hands, faces, itchy rash flaring up different places.Chest pain and hard time swallowing things. It seems to be under the control a bit now. still have half face full of rash, itchy hands and feet, but swollen is coming down a bit. almost look like I had Botox injection of sort.
when i called BC cancer on Friday about it., my MO were too busy to see me. Go figure. So one more ER visit Friday night. I ended up calling the BC cancer physical on call twice a day when new symptom appears.Based on their instructions either go to ER or taking the steroids at home.
Finally got hold of my MO today, first thing he said was not" How is your side effect now". instead his first comments was: Please do not call that often, it is for emergency only. I was a bit speechless. He went on to say there are not a lot of they could do for the side effects such as this, continue with steroids at home and seek ER if issue becomes severe.
@.
It further enforces my belief that I need to advocate for my own care. As a patient, I am not educated on rare side effects, nor how to treat them. It is a bit shocking to hear from my MO that I shouldn't have made this a big deal. One of physician on call actually said, call us when you have difficult breathing. I almost wanted to laugh, I should called 911 I cant breath, it will be stupid of me to call the BC cancer switch board and wait for 10 min for Doc to call back while I couldn't breath.
Sorry, venting a little.
One Doc said they should cancel the last chemo, one Doc said they should check more things on my blood work, my MO said he will switch to a new chemo for the last cycle. so we will see.
Hope all your ladies are doing well.
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Dobie. Eeeeks this is a horror story. When I was deathly ill my sis drove me straight to bcca and we lined up at booking desk saying I needed to see someone urgently. My mo was not there but they scheduled me someone ASAP. This was daytime and out of the norm to do but it worked. They admitted me to vgh with basically no white cell count. Squeaky wheel here worked this time.
Yes push and keep pushing. I don’t know how older folks from the generation that just sits and accepts doctors orders do it! They must be dying like flys
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NVDobie; That sounds so uncomfortable, scary w the chest pains, and a terrible hassle. I'm sorry you were treated that way.
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NVDobie - wow - I can't believe your MO said that! I am apologizing on their behalf for you. Shitty treatment - it would be nice to be treated as a human being with concern, empathy and response for care instead of being made to feel shame for feeling sick and scared. This is what I have learned to do as well is to keep advocating even when they make me feel ashamed for asking for help in an overburdened system. Then I keep track of all this that I have experienced and when I get some breathing space and feel more healthier I plan on writing a letter of recommendations from my experience. A lot of times it just feels like poor service.
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Everyone
Thanks for your support. It makes a huge difference to talk to you ladies who knows what I am talking about.
Probably the first moment since diagnosis I felt a bit helpless. Leaving our treatment plans and associated prognosis at hands of Doc who may or may not always care or at the same level of competency or experience or opinions.
Good thing is there is protocols at BCCA but still feel like a statistic to our doc. Of many things in life, We could walk way and find an new option. Not a option here.
My MO is the head of BCCA on BC, so walking away from him doesn’t help me to deal with BCCA.
I am trying to think from his point of view and be positive about his capabilities vs. bedside manners.
Also teaching me to be more empathic towards others.
Anyone know how Ontario manages their Cancer patients? Do they also have the cancer agency to coordinate all things?
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NVDobie I am really sorry that this happened to you. I don't accept that brilliance is any excuse for insensitive and inadequate patient care. The MO needs to get over himself and we should be able to speak up. Keep notes with dates and submit them at the right time if you aren't up to speaking to him directly, which I can certainly understand right now. Or you could fill out a patient comment card:
My friend is receiving care right now from a leading MO who has a reputation for an awful bedside manner. Not sure if this is the same one. I mentioned this in a general way when asking my surgeon to send me to a “friendly" MO. She then asked me for his name, which I provided. She said “oncologists have a difficult job" but I don't buy it. Maybe he will never become Dr. Kildare but he can learn to behave differently.
(You are probably too young to remember Dr. Kildare!)
This is not the standard of care we should receive from a leading cancer centre. Every cancer patient deserves kindness. It is an essential part of healing.You will be helping other women by reporting this when you are ready and have the energy for it. For now, concentrate on being kind to yourself and finding support where you can
I hope your allergic reaction has settled down a bit. Gentle hugs 🤗.
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I felt chia to be stuck up but he did answer my many many questions ( probably eye rolling behind my back) and I think he does have brains to burn in the cancer field. I stayed with him and my agressive treatment plan. That was many years ago and I hoped if I ever had to see him again maybe his corners would have softened a bit. I didn’t prefer that I had new doc students asking questions but did understand this is how they train them. So I basically asked all the same questions when chia came into the room. I’m sure he heard them when the intern reported to him before he saw me. Oh well. Repition for emphasis!
He really disliked it when I told him I was on certain natropath and Tcm treatments. I shut up about it next visits Then we got along fine. Unless someone comes along that is five stars I guess id stick with him. My parting words to him were. Thx and goodbye I hope to never see you again ( meaning I don’t want cancer beast returning) we got a wee smile out of him
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Wrenn, it is encouraging to know that your MO was able to show compassion when it must have been a very difficult time for you. We all deserve that.
I have only had one meeting with my RO/MO so too early to comment but I like him so far. I had a long list of questions and a copy of research he had done that showed I might be able to skip rads. He gave me the choice and said no one had brought in his research before. My treatments start on Thursday.
I will ask my friend if she was ever able to build a rapport with her MO. I do think they should adapt to the patient instead of us trying to work around them. They may be stressed but I doubt that they would want to trade places with us.
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Wrenn, it's true, we can't change them. But the hospital or cancer centre could expect more. Many medical schools today include sensitivity training and communications skills. I think some docs just get away with being brusque.
Thank you for the good wishes about my rads. I'm a bit nervous, since it is on my left side. But it offers some recurrence insurance so I will do it.
I hope everyone is enjoying the sunshine today!
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Just chiming in to say that I've met 3 different oncologists at the Fraser Valley Center and so far I've been ok with all. I have an allied health background & I always bring dh with me (an affable guy but he's used to hanging out with rich business people and lawyers and accountants etc so he's not easily intimidated, kwim?) & so there is a chance that this changes how people interact with us. I usually don't have a lot of questions but the questions I've had have been dealt with respectfully. I personally love students & always welcome them to my care team but I haven't had a single one at the cancer center.
When I was in hospital with febrile neutropenia the first time, one of my MOs called me on my cell just to chat & let me know they were aware of my hospitalization and had been in touch with my doctors at the hospital.0 -
What an amazing story moth! Hmmm seems like the Fraser Valley is the place to be!
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