I think I understand what little orphan Annie meant when she lamented that tomorrow is always a day away. This journey just never ends and I wonder whether the sun ever does actually come out (figuratively speaking). I keep thinking - if I manage to clean the house, I’ll feel better. If I can get healthy home cooked meals on the table every night, I’ll feel better. If I get up extra early so all the beds are made, uniforms ironed, nutritious yet appetising lunches packed, etc., then the school run will go smoothly and the kids will be happy. But it never does and they never are. If I budget better, money won’t be so tight and we might be able to do more fun things, but there’s always something unexpected. I feel like it’s always just out of reach and I’m never enough. I feel like I’m running a marathon but they keep moving the finish line.

YOU sound exhausted stargirl - Maybe accepting that if the beds are not made does it matter? if the boys pee on the bathroom floor make them clean it up (yes it is quicker for you to do,) but by making them do it they learn consequences to their actions. Let go of the perfect house setting..... My joke to friends is that the dust is my deceased friends visiting as ashes to ashes dust to dust .... etc..... before I was paranoid about an unclean house and dust etc.... but now I dont sweat the small stuff as the hot flushes do enough sweating for us all.... Hugs and know You are enough....

Thanks again @SoldierCrab. Ironically, 3.5 years later when I developed a new primary and did then have a mastectomy I was offered loads of support. I was quite bemused. When I was expected to die and immediately post-chemo I got ZERO support. When all I needed was a boob off and some radiotherapy I was suddenly offered counseling, a nurse, told about OTIS etc. Where the f*ck was all that when I actually needed it???? I don’t mean to sound ungrateful but the system is truly bizarre. The less sick you are, the more help you get? I did actually point that out to them in hospital and they sheepishly admitted that the service is a bit shit for stage 4 de novo but that they try to do it better now. I hope so for all the women coming through now. On the upside they obviously get quite a bit right as despite the grim prognosis 4 years ago I’m still lively enough to get quite feisty 😬

I hear you @StarGirl, especially re the kids. My niece and nephew (who I'm raising) fight like vicious hyenas, and sometimes the rude insolence is breathtaking. It's hard to not let it ruin one's day, and poison the atmosphere in the whole house. If I could I'd send Super Nanny your way!The treadmill of appointments is awful enough when you're newly NED, let alone living with mets. You have my heartfelt sympathy. I'm seeing a genetic specialist in two weeks to learn more about my genetic mutation which puts me in a higher risk category for several cancers. Part of me is looking forward to having more information and using it proactively to stay well. However the other part of me is wary of being shoved onto a never ending series of scans, checks and tests. My BS worries about that for me as well. We'll see.@Silba The burden of my self expectations is heavy. I beat myself up every day with guilt that I haven't done enough. I'm so tired, my energy is not good, I'm sore, my hands aren't as strong as they were. I have to get my head round the fact that I will not be returning to what I was. The sooner I can except that the better.@Afraser Not ten minutes ago I dropped in at a yoga studio that's been recommended to me! I have to give it a go. I need to reduce my stress to help my anxiety levels. Trying to put together the jigsaw puzzle of my new normal.@Doodoo :* <3 :)

@StarGirl Don't be so hard on yourself. The intent is there but the actual will take time to come together. Reflect on where you have been, as long as you don't stay there too long, give yourself a pat on the back and say good grief, who'd thought! Look at how well I am doingHave to laugh about your little boys pee on the bathroom floor - I just encountered two little boys at the supermarket with a Mum who was flustered because they were using the chrome bars that separate the aisles between registers as monkey bars - one of her boys tapped me on the bum because I was coming backwards towards him - I laughed at him and she was so flustered and I just said hey they are little ones enjoying themselves, no harm done!Not sure if you are familiar with some things on offer through here that might help and or if you have not already taken advantage but here you are something for you and something for you and the familyLook Good, Feel Better (Free)https://lgfb.org.au/workshop/ ; or the Home delivered kit https://lgfb.org.au/home-delivered-confidence-kit/Otis Retreats (Free)https://www.otisfoundation.org.au/Hope that helps and heart goes out to you as it's never easy regardless of stage, type or anything elseTake care, sending you a virtual hug

Today’s Mood: cranky with a touch of psycho

35 Replies

StarGirl
Member
7 years ago
I just saw this on Facey. And I think it’s what all of you lovely people have been trying to tell me. Cx
StarGirl
Member
7 years ago
StarGirl
Member
7 years ago
Thanks again @SoldierCrab. Ironically, 3.5 years later when I developed a new primary and did then have a mastectomy I was offered loads of support. I was quite bemused. When I was expected to die and immediately post-chemo I got ZERO support. When all I needed was a boob off and some radiotherapy I was suddenly offered counseling, a nurse, told about OTIS etc. Where the f*ck was all that when I actually needed it???? I don’t mean to sound ungrateful but the system is truly bizarre. The less sick you are, the more help you get? I did actually point that out to them in hospital and they sheepishly admitted that the service is a bit shit for stage 4 de novo but that they try to do it better now. I hope so for all the women coming through now. On the upside they obviously get quite a bit right as despite the grim prognosis 4 years ago I’m still lively enough to get quite feisty 😬
SoldierCrab
Member
7 years ago
YOU are still entitled to a breast Care nurse .... !!!

ah being perfect ....... let me see I tried that once ..... nearly killed me and my kids were unhappy with the grouch from hell.....

Stargirl did you get an inbox from me with the links to different things ?

IF not I can redo it here.
StarGirl
Member
7 years ago
Thanks for all the info @SoldierCrab. I have not heard of Mummy’sWish. I don’t think most places deal with mets de novo very well. Because at initial diagnosis I was considered inoperable it was straight to chemo. No surgery and no radiation. That meant no breast care nurse, no information, no check ups with surgeon etc. other than ongoing Herceptin and Perjeta, after chemo I was pretty much on my own. I didn’t know what to do and hadn’t really told people, so I just went back to work and tried to carry on as normal. In fact, I increased my hours and tried to be supermum. Worst. Idea. Ever. Just about killed me. Having recently got a new cancer (because I am such an overachiever lol) I am trying to take a more measured approach, but it’s bloody hard. I can’t work anymore so I feel pretty useless. I just want to be perfect dammit!
SoldierCrab
Member
7 years ago
I can tell you my kids and I learnt the art of in really stressful times pre BC that I would let out this howling squeal and they knew it was a rumble /tumble time on the bed have a cuddle and giggle and maybe weather permitting off to the park to have a swing you know they are happy Young adults now who often bring up the fun times we had ... I learnt back then to survive I needed to chill out about having the perfect house.... I would put on a load of washing in the evening when they went to bed throw it in the dryer and pull out fold and put away ready for the next day very little ironing and I got to spend the time with them....
wendy_h67
Member
7 years ago
I think it is the hardest thing to cope when you are feeling exhausted most of the time. I'm lucky that I dont have any young children now. I dont know how young mothers do cope when you are feeling exhausted. The day after chemo , I was feeling pretty good and got stuck into the ironing, scrubbed the shower recess , did some gardening then the exhaustion really hit suddenly. I was like a bear with a sore head, especially when my husband asked me what we were having for supper . So I guess the answer is to not over do it. Try to prioritize jobs with family members which can be very frustrating at times. Try to enjoy some time each day doing things we like to do. I am now 7 years since diagnosed with metastatic breast cancer and life goes on.
Zoffiel
Member
7 years ago
I did this @stargirl after hearing it was working in pubs and public toilets. I only had one child, so there was no doubt about who was pissing on the floor. A little bit of motivation seemed to help. This is a UK site, but you will find something OZ if you try.
https://www.amazon.co.uk/10-Fly-Target-Toilet-Stickers/dp/B00567WUEG
kmakm
Member
7 years ago
Check out the Otis Foundation too @StarGirl. It sounds like you could all do with a holiday.

http://www.otisfoundation.org.au
StarGirl
Member
7 years ago
Thank you @kmakm. I desperately hope that’s true. And I am definitely going to try that.