Canadians in British Columbia

Ashlyn

ow long was the study Wrenn? And what was your time commitment?

wrenn

Ashlyn, The criteria for being part of the study is to have pain that measures a 4/10 for most of the time and must be related to cancer (surgery, treatment etc).

For a half hour a day you immerse yourself in a computer game or meditation that they have set up on a computer that they supply. They also supply headphones and a controller/joy stick and a timer. You do that for 6 days with one day off and for 4 weeks. Each week has a difference game/meditation. You note your pain level at the beginning of each session, during and after you are finished. There are a couple of pages of simple questions at the end of the week. Those take a couple of minutes.

I tried too hard to win the game the first couple of days but remembered that they told me the point is not to win but to be immersed to see if the distraction helps with pain. It was quite easy and actually enjoyable. Two people I know are in the middle of it now and liking it as well.

Ashlyn

thanks for the info! not sure my pain is constant enough but might look into whether I would qualify. I like the idea of a game or meditation each day to distract

wrenn

Ashlyn, You can email or call the person on the poster and run it by them. They will let you know whether you qualify. I don't think the pain has to be constant.

hugz4u

I had the pain study come and set me up. I start Monday. It’s fun and actually the first trial I told the guys I forgot about my pain! It’s so immersive that you forget that your in the real world.

FYI.I told them my pain comes and gets worse at times. They said that I was ok to do it.

NVDobie

hope everyone is doing well. Spring is finally here.

A question for ladies who has went thru chemo with BC Cancer. Do they do any test on usafter chemo to see whether they have got ride of all dedectable cancer cells?

Thanks

Ashlyn

Hi NVDobie.

Not usually. I believe they only do this if you have worrisome symptoms. I had a bone scan about 6-8 months after chemo and radiation but it was joint pain from Tamoxifen.

Best of luck with your treatment

marianelizabeth

Wrenn, I think it was you who let us know about the UBC study. It is a study being done with the UBC School of Nursing in conjunction with the Simon Fraser School of Multi Media. I am almost finished week 2 and struggled with this week~~no spoilers but I had nausea from Sunday AM until Wed. AM and this particular Virtual Reality section set off motion sickness in a big way. Gordon, who Wrenn and probably Hugz4u know told me what to do and is totally supportive. I told him on the end of week 1 call, how blessed I have felt to be a part of the study. As Wrenn says, pain must be 4 or above on a scale of 1-10 as one of the criteria. Ashlyn, I too like guided mediation.

NVDobie, there really is no test to say whether there is any residual cancer remaining following chemo. In my case I had chemo then mastectomy and one node was still positive from the pathology done on the tissue taken then. Radiation in my case was certainly needed.

May each of you have a good weekend and maybe try to think of one thing to add that will make you feel good. I am going to try to do half an hour of weeding each day because it feels so constructive yet fun to clear small patches bit by bit.

Ashlyn

Mariane. I’m with you on the weeding! Satisfying!

The pain study might not suite me if you experienced nausea. I have been dealing with vertigo and dizziness on Ibrance so I think VR might make that worse.

hugz4u

Marianne I asked Gordon if I totally hated a game could I do another and he hesitantly said, well just try to do it best you can but if you cant then ok you could switch games. You might want to confirm this if you want to switch games to make sure he's 100 percent ok with it. The butterfly game made me so dizzy and he said not to fly fast to the ground and that's was helpful.

Weeding is hard work but very therapeutic. I wish I was there to help. My garden is calling me to. Yes a half hour is about right to start gardening with lymphedema. Wear you hand and arm garment for sure and leave on. When you come in plop your arm up.Rest. Drink lots of water and dont do anything more physical with it so you don't flare. Have a good day. It's getting cloudy here. I won't buy plants till June 15 when they clear them all out cheap. That way the greenhouse looks after them for me and I get them to do the work!

NVDobie, it's kind of nerve wracking but once they set you free there are no tests unless you have symptoms. Mentally we can struggle with this and a counsellor can help you calm yourself. We always want to be in control doing all we can so yes I would like tests to beproactive. I know from experience, It's hard to wrap your head around this.

wrenn

Regarding the games it is interesting to hear about nausea and dizziness. I didn't experience that that I recall but I sometimes have vertigo anyway and may have attributed it to that at the time. I actually enjoyed each game. In the beginning I struggled being so bad at solving puzzles but Gordon told me it didn't matter how far I got. I actually used a youtube walkthrough and solved very few on my own. They just want you to be immersed.

Re follow up. I too was told to mention any symptoms that last for two weeks. I did have pain in my side and a bone scan was ordered but I cancelled it a day before because of fear of agoraphobia. The pain went away.

I think it is a struggle when treatment ends because you are no longer feeling cared for or tracked. Cancer is a mind fuck.

marianelizabeth

Gordon and I spoke yesterday and I actually got through Wildflowers to the 28 minute mark.

wrenn

My favourite week was the meditative walk. I found the sound for that one made me feel good even after the meditation was done. I was puzzled when day 4 sounded familiar until I realized that days 1,2 and 3 are repeated for 4,5 and 6.

The Witness and Obduction were difficult for me but fun when I was able to just enjoy the view and not compete. I had never used a controller/joystick so it was fun once I got the hang of that. I was really immersed. I don't think I was as immersed in the wildflowers and if you did two meditations in that one you would go over the 30 minutes.

I think Gordon tries hard to make us comfortable. I think many participants are older since my friend was told she was quite young at 37. He told me I wasn't the oldest at 71.

I'm glad I participated. I hope they get all the participants they need and that they will follow up with us regarding results.

NVDobie

wrenn, hugs4u

Thanks for the insights. Wow. Sounds like Hope for the best approach. It is unsettling for me given MO design each patients chemo plan based on protocols and personal preferences or experience I assume.

How do they measure their own performance and oncologist treatment plan accuracy or mistakes vs. incidents?

Besides the chemo given before surgery, how do they know they picked the right combination and did what they expected to do, given each person could possibly react to the drug differently and tumor cells may react differently.

Symptoms often indicate beyond cellular stage, or taking strong hold in distant locations or local regional recurrence. A bit scary.

I don’t mind doing the tests on my own expense if there is such test available or creditable to evaluate chemo effectiveness.

wrenn

NVDobie, I don't think there are tests available. I also don't think there are that many options for chemo. There are a handful of drugs used for each type and then individual variance would be according to what you could tolerate I think. I was prescribed Adriamycin but wouldn't take it because of risks to heart. The only options I was given after that were to either decrease dosage or timing of infusion. They basically don't really know what will work until they see who has a recurrence. If you look at profiles here you will see there aren't many differences in drugs.

It is scary but eventually I think you just learn to live with the fears and hope for the best. Follow up if you have any unusual pains.

Mindfulness meditation works to diminish my anxiety somewhat but almost 5 years out I still worry when I have any new ache or pain.

Walden1

Can anyone in Vancouver recommend a good bra shop for a post surgery camisole? Having a single masectomy without reconstruction, so I need something that will support my 32DD size breast on one side but still be super comfortable on the other surgery side with nothing. Specific bra recommendation is good too

wrenn

Hi Walden1. I liked Nightingale Medical Supply at 950 W. Broadway. Diane's on Granville was also good but expensive.

Edited to add that you will have to try on different bras to see what is most comfortable. I had settled on a bra and forms because they felt most like I remembered my breasts feeling but then realized after wearing the bra and forms for a while that they were just too heavy and went to a lighter form. Comfort I think is the most important thing and try them on with the type of top you will be wearing most to see how you think it looks. I think it might be harder with just one side than I found it with both but you will adapt.

DearLife

Hi Walden

I didn't have a mastectomy but had a lumpectomy at BC Cancer Agency in February. The nurses and docs were great and everything healed well. I think different Vancouver surgeons use different operating facilities depending on availability but many seem to be at St. Joseph's.

Maybe someone who had an MX at BCCA can comment further.

Good luck with your surgery!

hugz4u

Walden. Look up WEAREASEin the USA. Expensive with the exchange but Phyliss is so helpful.Youcan personally talk to her about fit. If you tell her your Canadian she might give you 30 percent off as she did for me She has cami that compresses the trunk if you have lymphedema there and also really nice area to stick your breast forms in. She spent much time making all her camis and products work. The black one ( I think 950 style) I have is so silky and nice that I can wear it as a tank. About 100 bucks but long lasting. The material is top notch.doesnt roll up. Everyone loves her Sydney bra. She has YouTube on how she designs each one. She cuts them high into armpit to compress this area if you have swelling. I can't say enough more than fabulous.

NVDobie

Wrenn

Thanks! Will also look into meditation, as I need to find ways to manage stress and work life balance etc especially now with this.

Hope everyone is having a good weekend, weather is finally nice all over

bluepearl

Mindfulness meditation is amazingly healing and healthful!!!!

wrenn

There's a free mindfulness course at the cancer agency that I found helpful.

NVDobie

wrenn

http://www.bccancer.bc.ca/about/events/mindfulness-based-stress-reduction-program

Is this what you referring? Too bad it is in Kelowna. :-(

Can you ladies tell me more about mindful meditation? Is it like specific style of meditation ? Like different style of Yoga

wrenn

NVDobie, It is the same program but it is at the cancer centre on W. 10th. My friend just finished it a couple months ago. Try calling the counselling department to find out when the next one is.

Basically mindfulness teaches you to focus on the now because thinking about the past might make us feel depression or regrets and thinking about the future causes anxiety. If we are in the moment we see that at this moment we are ok. It takes practice and after the 8weeks (I think it was 8) course I was in the habit of reminding myself to be in the moment.

There are podcasts or youtube videos that also help. I like Jon Kabat Zinn videos. He is who the course was based on. If you listen to his podcasts or youtube videos you can decide if it is something you would like.

I find it hard to meditate on my own but I go to Callanish on Mondays and find that a half hour meditation feels like 5 minutes. I think it is really helping me.

I probably mentioned this (shitty memory) but Callanish.org is a great resource for people with cancer. You can google them. Inspire Health is also useful for some things but I prefer Callanish.

I think the emotional aspects of my diagnosis were worse than the physical parts. You really have to pay attention to how things are affecting you since stress is known to deplete immune function. It is so hard to avoid stress with this damn disease.

Keep posting here for support.

hugz4u

I did mindfulness course at cancer centre on W 10th. I loved the walking meditation.

marianelizabeth

NVDobie, yes it is the same~~MBSR. I took it in 2013 spring while still doing rads. They prefer you are not in active chemo treatment as I recall because it is 8 weeks, two hours each week plus a retreat on a Sat. towards the end. "grads" are invited to the retreats if there is room and I was lucky to have gone several times. There are also evening sessions one can go too also once you have taken the course. It was the best course ever say many of us and we had virtually no attrition. It is available in the community and costs upwards of $375. The woman who started at BCCA Vancouver retired after almost 20 years teaching but Melanie MacDonald who was on mat leave is back at it. She worked with Sarah for several years.

Wrenn and Hugz4u, I am in week 4 of the UBC study and I am doing the mindfulness exercises lying down after last week with motion sickness I am really appreciating it.

wrenn

Marian, What a great idea to do the meditation lying down. I hadn't thought of that. I loved the sounds on that meditation (thinking the walking one and not the butterfly?). I wondered whether the sounds/beats were intentional. I can download the Kabat Zinn meditation from 2010 (iTunes) but it doesn't have those sounds. Gordon said he would ask the developers if I could get a copy with those sounds. I found it immediately soothing and the feeling lasted.

I had planned to also buy 'The Witness' but now realize I don't want to test myself with that one since I found it difficult and although kind of fun I am relieved to be done with it.

I agree that the MBSR (and follow sessions) were very helpful and of course the price was right. :-)

Hope everyone is enjoying our amazing weather. Hard to remember the grey days now that the sun is here and leaves are on the trees.

NVDobie

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!!

wrenn

NVDobie, If you have an ipod or some kind of MP3 player try listening to podcasts or soothing music in bed. You can download guided sleep meditations to an ipod so you don't have to depend on wifi. They are handy to use during the day too to just give you a break from your thoughts. One thing I found most useful was to not try to chase away the anxiety or random thoughts but to just notice them. Like "Oh, I am really having some anxious/angry thoughts right now". Mindfulness is sitting with what is (which is really hard to do without practice. :-) )

Another tip I got from Callanish meditation was the leader mentioning before we start to open up our hearts to compassion for ourselves.

It is really hard to go through this cancer stuff and luckily we have the people here who 'get it'. Keep reaching out.

NVDobie

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