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Strategies for those rough days
MoiraC
Member Posts: 173 ✭
Hi everyone -Many of you have traveled this path longer than me -I am 10 mths in with no surgery but liver and bone mets and had several chemo rounds and now on Xeloda and coping better side effect wise apart from neuropathy and hot flushes made worse since I now take Exemestane. I am having a ratty couple of days -losing my cool,computer problems, discovered made an appointment at wrong medical practice,paid bills with wrong card, and have spent the last week waking 3 times night drenched in sweat with nightie wet through. The sweat running down into my eyes is what wakes me and the pillow is soaked. I had to change 3 times last night! Feeling incompetent and OUT OF CONTROL! Just love that -ha ha. I have a wonderful supportive partner but I am snappy with her at times. Am doing massage acupuncture exercise etc resting trying to stay in the moment but some days I am really struggling. I am so sure others have had this and am really keen to learn from all you great women what strategies you have tried to get through 'those days' when everything all feels like rubbish! It isn't like we know this process of bc will end soon -if we are lucky in the met group we are in this for sometime. As Professor Fran Boyle says we are now more likely to die with met cancer than from it which is great but... any thoughts?
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Hey Moira, I was just having the same thoughts, only difference I am doing this alone, my kids are all, you don't look sick so it's business as usual, which for the most part is if I don't call I don't hear from them unless it's my birthday or a holiday. Eben the onc nurses don't really give me a second thought because I am not in there having chemo, just ECG and injections once a month, I feel invisible.1
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Being unwell can be very isolating. I lost my much loved job and now work part time from home. I hate it but can't get anything else. I went to an interview last week and completely lost the plot half way through--I must have sounded like a complete fruit cake. It was absolutely mortifying.
My brain doesn't work and simple problems become major issues. How do we get through this? I have no idea.1 -
@zoffiel As if interviews weren't stressful enough... Don't feel mortified, though - it's the cancer, not you. I don't know what to suggest to deal with the isolation. I feel completely sidelined and wonder whether I will ever regain that space for myself as a fully-functioning person again and if I can ever stop thinking about the cancer.1
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Hi there @MoiraC ...sending a big (((hug))). I don't have mets, but I have a veritable shopping list of other shit, aside from the BC, tossing the dice as to which will eventually knock me off my perch. King of which is a brain aneurysm, literally a ticking time bomb, and factoring in that I've been on high doses of blood thinners for 20+ years, well...'nuff said. There are days, and very particularly nights and the wee small hours that I feel a bee's dick away from losing it totally. My Bepanthen for my soul is my knitting. I sit there with balls of yarn and two pointy sticks and my fucked up body and brain transform it, one stitch at a time into something useful. If my brain is particularly scrambled, I work on something very plain that requires no concentration, just muscle memory to churn up and down each row. If I have a measure on brain synapses firing in tune, I work on something with a lot of lace work. Concentrating on a convoluted pattern chases away those other nasties which always lurk. Each of us will have something which soothes them and nourishes their soul, yoga, exercising (shudder), painting, gardening...whatever. I'm sure you can find something, for just that short period of time that is repetitive and soothing for you.
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Hi, when my life goes out of control I like to use guided meditations and mindfulness to help me cope. I have a lot downloaded onto my ipod and keep it by my bed so that if I wake up through the night, or can't get to sleep, I can just grab it and listen. I dont have any cancer related ones but the ones I currently listen to are by Meditation Oasis, The meditation for health podcast, and 60 mins of relaxation music. Although, one of my relaxation music ones has a lot of sounds of running water … not a good idea for a middle aged bladder in the middle of the night
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Not much to add to all of the above, I have a pyjama day, I have earned it I deserve it!!!, my partner understands, he only has to look at my face to know what sort of day I/He is in for,"Go back to bed Wendy" and I do not have any feelings of guilt,
Tomorrow is another day,there has to be some perks to this crazy merry go round we are on,sometimes its enough just to sit in my sitting room with the window open breeze ruffling the curtains and the only sound is of the birds -
wendy553 -
Dear @MoiraC , I love reading, but some days I don't even feel like reading. I like looking at paintings on-line. I like watching birds. When I force myself out the door I like walking and looking at the sky and trees. I'm lucky enough to live at the edge of a rural village, but when I'm in town or Sydney I love looking at gardens and buildings. I think these things all take me out of myself. I also couldn't function without lists - big lists, little lists; and as for pin numbers I have to write them all down with what they are for next to them - so much for security! Best wishes and hope you have some very good days coming up.1
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@MoiraC, sounds like you are going through a bad patch right now. I was on Femara for 18 months and my husband would just watch me as suddenly it looked like I had had a bucket of water thrown over me. I'm now on Aromasin and the side effects aren't as bad yet. What gets me through everyday is having something to look forward to. I always have a little trip away booked.
When the side effects got too much for me on Femara, I had a two week holiday off it. I told my oncologist and he was fine with it. It did me the world of good. That was my personal choice though. Take care.
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Dear @Kattykit - that is tough feeling invisible - but hey we see you! not the same I know but do know there is support out there. Are there any local groups or activities you can involved in? I understand how easily it is for people to look at us when we are looking well and not seeing what is going on - I think it helps them avoid their own and our mortality. Wishing you well1
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Hi @Zoffiel - I agree very isolating. But I reckon it is really good you are working part-time even if not ideal. I don't really think I could hold it together! Like others have said maybe we need to find some of the positive in each day - I really think a good walk each day does shift stuff for me - all the best0
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Dear @AllyJay - thanks so much for your hugs - it feels good! indeed you do have a big challenge there. I really admire how you have worked out how to adjust your knitting around those tough spots. You have reminded me to try and find that something that takes me out of my head. Walking and reading seem to help but also travelling and being in the bush - am working on that. Sending you best wishes and happy days with the pointy ones.1
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Hi @Mira - thanks so much for this suggestion. It is strange to me that I was better at doing meditiation and trying to be more mindful when I felt sicker. It is almost like when I feel well I power on and then hit my limitations and melt down. Glad to hear the music works for you - I will indeed avoid running water! there is enough of it soaking my bed thru sweats everynight. All the best1
