Spoons of energy
Here's an analogy I heard recently. It helps describe to people who aren't living with chronic pain/illness what it's like in a way that's a bit easier to understand. Every day, I wake up with 20 spoons full of energy. This is my entire allotment of energy for getting through a day. Getting out of bed, some days this takes 2 spoons. Having breakfast, getting ready and driving to work in traffic and walking to the office - well that's 3 spoons if the traffic is bad. A whole day at work - there's 10 spoons right there. And if I have to go to a meeting which ratchets up my anxiety? Let's add another 4 spoons to get through that. If there's a medical appointment on this day - wow that could be any number of spoons. Getting home will take another 3 spoons after I have walked to my car with aching feet and burning joints and battled more traffic nightmares. So by the time I get home, I've gone over to 22 spoons. Where do I get the extra spoons from? How do I find the energy to make dinner, have a shower, prep lunch for the next day? Do I take the energy from tomorrow? What then? I have to start tomorrow with only 18 spoons of energy. How do I ever catch up? I guess what I am learning through this is that I need to be more careful about giving away those spoons of energy on things that are not useful, not helpful and drain me too quickly. Do you deserve my spoon? Have you earned my spoon? What would I prefer to allocate my spoon to?Thank you
Hi to all! Of late I have found myself in a tangle with users of the forum that have an angry ant attitude. I get it totally that the diagnosis that is given is totally unexpected and hard to take and need to hit out but there's a right and wrong way to go about it. It is totally unfair and I have become a little tired and jaded by it all and feel I need to bow out for awhile. Thank you to all that have supported me and I know I have tried to impart knowledge and sensibility to others in return. On a positive note I have just been through my review with the Breast Surgeon and gone back onto annual reviews after my recent hiccup so I am over the moon about that. I just need the Oncology part of it all to settle, both medical and gynaecology and I will be more than pleased. Take care and please support where you can and if you're unhappy with something said then think about it before responding as we are all vulnerable at varying times and support BCNA with advocacy where you can byeMemory
For some as a result of diagnosis and treatment the effect on our memory can be distressing - fatigue or chemo induced or anything else in between, stress, anxiety, menopause! I have a sister who has early onset Dementia and on the road to diagnosis she was seen by a health professional, Neuro Psychologist. She has written a book and there's a precis of it here that some may find interesting or useful to someone you know Memory-wise - Dr Anne Unkenstein -- Allen & Unwin - 9781760296384 - Allen & Unwin - Australia (allenandunwin.com) Best wishes to all
Anxiety is a BITCH - as is depression
ANXIETY IS A BITCH All because someone said or did something, along comes that feeling, the tight chest, the unease etc... sometimes you don't even know what triggered it, it just hits you. Then you feel anxious about the anxiety! This in turn can lead to depression. So - That is how it starts - and the first step would be to call the hotline here & chat about it 1800500258 Or - see if your local health service or Cancer Clinic has access to a Counsellor/psychologist for a chat. There are many ways that chatting with a total stranger can help you ..... Some more benefits of counselling ..... It happens to ALL of us at one stage or another. Don't wait for it to become a major problem - get onto it early, learn some coping mechanisms (eg identifying the triggers) and disarm it before it becomes a major issue Take care xxx
Exercise during chemotherapy
I am halfway through my chemotherapy today. I have walked almost every day during treatment so far. I like walking and did it a fair bit before BC. When I was diagnosed I asked about what I could do, and was advised to eat well (a very nebulous statement with which I was NOT satisfied, and rectified soon after with visits to an excellent dietician) and exercise. I was informed that the latter had been proven to reduce side effects and fatigue. I am having TC chemo. Bloody awful, and so far, Day 3 - 5 sees me king hit with fatigue. I walk early, 1.5kms and that's me done for the day. By afternoon I can't even sit upright. However by Day 6 I've been managing 3kms and through the rest of the 21 day cycle I slowly build up to 5 - 6kms. I've been hit with a host of physical side effects, but so far they're sitting in the low to medium band of irritation. Nausea, constant low level headache, reflux, sore nail beds, itchy sore plams & soles, gritty eyes, dry nose, and a few more I can't recall now! Has anyone out there walked through their chemo? If so, how have you found it?
The Beacon - let down
Morning ladies Got my Beacon magazine yesterday, love reading this, especially the stories of the ladies that have gone on to really achieve things since diagnosis. But the piece about fatigue this time made me feel let down. I think there are 3 types of fatigue - the normal healthy person one that is just tiredness at end of day. Second the after sickness / chemo / one that is general tiredness at any time of day - which as the article said can be helped by exercise / diet etc. But she did not mentioned the hit the wall, sledgehammer one. It happens to me less often now (3 1/2 yrs after treatment) but has come back more often lately after I succumbed to a flu like virus a couple of months ago. Taking a walk does not help, in fact it makes it worse. It is not only tiredness but you are brain dead as well. Hit last Friday, after work I had a 2 hr nap, got up at 4pm. Made tea, did washing then back to bed by 8pm. Slept all night, drag myself out of bed at 8.30am - repeat Saturday. Sunday, had a shorter nap and then Sunday night all over, couldn't get to sleep for a while and back to normal - up at 6am, no nap, bed around 9-30 to 10. So were is the info on this one??
Letrozole
Hi Ladies I have started my third month on Letrozole and I have started to ache really badly, ever so tired and the weight is piling on around my middle, even though the diet is good and I am exercising when I can but not as much as I usually do due to having an op on my foot and it is taking a long time to heal as it is very swelled. How is everyone else who takes it getting on? I came off Arimidex as that had awful side effects but now I am getting this. I still have over 4 years to take these tablets. I think I will be crazy by the end of it haha. Cheers Ady :-)
New podcast on fatigue
Hi everyone Last night I listened to our latest podcast from Upfront about breast cancer series. I wanted to post in here in case you had missed our promotions. This edition focuses on fatigue and includes Rina, who is living with metastatic breast cancer. I think Rina and the other guests provide some really helpful and practical information. It may even be very helpful for your support team. A link to the podcast is here: https://www.bcna.org.au/understanding-breast-cancer/resources/podcasts/episode-34-managing-fatigue/ I hope you are all looking after yourselves Cheers KirstenHIT - the wall
I finished treatment a about 4 years ago, coming up to my 4 1/2 yr post diagnosis, not doing to badly apart from my feet and tiredness. This weekend I fought against having an afternoon nap when I hit the wall, I went for a short walk (just 10 mins), I tried to do some sewing (that ended up in the bin, stuffed it totally) and by 8.30pm I gave in...and couldn't sleep. Tossed and turned and finally got to sleep. Woke a couple of times through night and dragged myself out of bed at 8am. Woke lethargic, achy, boobs sore, arm sore, back sore, legs sore, throat sore, bloody itchy. Great I am coming down with something. Let myself have an avo nap (21/2 hrs ?nap?) Woke much better, and am fine today. Slept well last night. Oh boy. Go back down to GP and get bloodwork done - iron, thyroid, diabetes, etc etc - AGAIN. No nothing wrong. So what do you do, just accept it. Laugh when you have friends over and I have to have a nana nap...yeah have to laugh or I'd cry.
Sleep
"We know that as many as 6 in 10 cancer survivors have problems of insomnia, which is up to three times the rate found in the general population." @SoldierCrab pointed out the Survivorship Center and I found this leaflet in their resources: Can-Sleep making night time sleep problems go away from the Peter MacCallum Cancer Center. It's got a lot of very straight forward information as a starting point, but I want to hear what you've found that has helped you, and how you have handled 'the vicious cycle of sleep deprivation' if you've experienced it. I have felt fatigued, lethargic, and overall exhausted since it all started, and when it all finished (in that it-never-finishes way) I was left feeling not much better. I spent an entire year spending days and sometimes weeks as hit by fog, poor memory, physical weakness, and even nausea as hard as if treatment was starting again. For me this is a BIG issue. I'm sure I've posted and asked questions about it before, but all the conventional 'tricks' don't seem to cut it. No caffeine even eight hours before bed, exercise, cut out screen time and cut back on sugar? Done. [Tosess around for three hours and stares at the ceiling in the darkness for another hour doing the most mundane mind-calming exercises] Okay, cool, when does the sleep happen. Oh hey it's 6AM, guess I'll get up. [Fast asleep on the couch by 2, awake by 5, goes to bed at 10PM, wakes up at 3AM] This is better I guess, I'll stay awake all day and get a really good sleep tonight! [Falls asleep at 9AM] ...Damn it! What actually works?
