The Beacon - let down

Wowsers I feel I'm lucky to have such a great oncologist and breast care nurse who are all over this. I finished chemo in sept then bil mastectomies in November and my onc wants me still off work til end of March. I said I think I could go back in February - she just looked at me and I shut up!  I totally trust her judgement and kniw she's probably seen lots of people crash and burn by going back too early. My job is quite stressful and busy so I want to make sure I'm super strong and look more like the old me ( cept damn ugly hair of course) ( starting to curl a bit at back it looks like a mangy old cat) plus I work in a hospital so my onc says being a place of infection I need to be really right. 
I so get the hit by a bus thing. I feel so frustrated I can't go like I used to even on the good days. No more am I the ever ready bunny

I don't know what it is in terms of fatigue but I have had one day a few weeks ago where the fog was suddenly lifted. I made the most of it and my son and I went for a walk down the beach. Then we went swimming in the ocean. Then we walked up to the shops too. It was fantastic. I haven't felt the same since. One day good with endless energy in two years. If I had known it was only going to be the one day I probably would have attacked my overgrown garden.

Wow I am not the only one. Though I had been told that each of us are different with regards to the recovery time. That hit the wall tiredness is the pits for sure. I’ve found starting the engine after it’s stalled hard. Though I don’t have anyone at home (I won’t count a 12 year old who thinks the world owes him) that can push start this human into gear. Usually it’s a call for help from someone can you do this or that which gets me moving. But I get back home and my mountain of unfinished tasks is still there. This holiday of mine is my hope for refueling so that when I get back and grandkids are back at school I can get things finished here at home.  
it’s one day at a time so I,m told
yesterday is gone can,t change it it’s a Memory
tomorrow is not here :-Anticipate 
today is where I’m at :- enjoy
Easier said than done
But mostly I keep going because I love so many people in my life and I’m not ready to leave them. 

I appreciate this frank discussion - how can life possibly be the same following the experience of a life-threatening illness/disease? A few weeks after my diagnosis in June 2011 I borrowed a book from our local library, 'Battlescars' by Matthew Carr. What he wrote was such good, common sense but written with a deep sensitivity. I made what I could call 'affirmation cards' from phrases he wrote, eg, 'possible outcomes are just that until they became a reality', 'chose your own ground', 'find something to do that is utterly you', 'hold on to the roller coaster that is life and enjoy the ride'. I had read every thing I could about cancer and to be frank some of it is rubbish and to call it 'mischief making' is not too far fetched, eg, suggesting that you have cancer because your ancestors sinned' or that you will need to meditate frequently every day. Matthew's approach and philosophy continues to inform and shape my days. Facing and living with day to day consequences of diagnosis, treatment and even remission heralds change - life cannot be the same and we will each of us deal with it in our own way. BCNA supports us.

Hmmm well I totally agree, I am 2.5yrs post treatment now but this year have had 2 major surgeries so went backwards a bit, however I am only really doing better now. I still get fatigued if I have too much on my plate, so I dont cope the way I used to pre chemo. I still have residual neuropathy in my feet and cant walk more than 30mins. I've been seeing an Exercise Physiologist for a year and the stretching I do is invaluable...and she has taught me all this way, do NOT go hard and fast its a slow build in anything you choose to do as your body will not cope. This is why she doesn't work with anyone going through treatment as she says that the body needs to heal and not be pushed. 

The other thing is unfortunately, the Oncologists dont want to know or hear the reality of the treatment and how impacting it is down the track. I think it happens more than it doesn't, but they don't want to know about it. I also think things get printed or reported on to paint a rosier picture!!!! and I agree that it doesnt represent everyone at all. 

I feel your pain .  Oh to have some energy again. I'm  on chemo forever due to metastatic breast cancer and some days I feel full of energy when I get out of bed, but it doesn't last for long. I do a bit of house work and I'm done, looking for a coffee break. It doesn't worry me too much, as usually I get a bit of help with the house work from my loving husband when I ask him half a dozen times. I then think I'm nagging him all the time.  I find when I'm tired,  I become very irritatable which I hate. Oh the joys of breast cancer. In saying all that, I'm happy to still be alive.

Deanne's comments strike a chord. I never had fatigue, worked through treatment. But as part of coming to grips with long term side effects, I learned (gasp!) that food and sleep don't automatically build energy, particularly when 12 hour working days aren't uncommon and you are balancing a pile of plates (metaphorically) most days! There's tiredness because you have been busy, there's chemo induced exhaustion and then there's failure to supply enough of the feel good stuff to keep you from running on empty. Cancer treatment causes one but can make one of the others so much more apparent! It's not about winding down but being a great deal more selective about where you put your energy and what boosts it. 

I think @Zoffiel your book may be more important than you realise - it might close a gap in community understanding of breast cancer

It would help if there was more understanding and realistic expectations from others about the effects of treatment. Personally I found it helped to take the pressure off myself about what I expected too. Giving myself permission to go easy some days. Over 4 1/2 years since diagnosis I accept that I will never live life at the crazy level I used to and what’s more I don’t want to. I really do think putting yourself constantly under pressure to do what we think others want/need is a fast track to ill health again.

We were diagnosed with CANCER not a head cold. You don’t just get over that. I live life the best way for me now. It is not selfish or self indulgent but absolutely necessary for my health. I strongly believe that and will not feel guilt about it. Going for a walk if you don’t get energy from that is not beneficial. Doing more of the things that DO give you energy is what CAN work. Getting rid of the guilt, being kind to yourself and doing less of what drains your energy. 

Personnally I do get energy from a walk if it is under my own choosing and not because someone else has told me I should or even because I think I should. My walks give me pleasure and a sense of achievement too, and that gives me positive energy. We are all different and need to find the things that help US.

My life before diagnosis was so busy I never had time to work out what I actually enjoyed doing for myself. I now realise that is not really LIVING. I walked around so ‘heavy’ with the load of never feeling I had done enough. Now when I feel that ‘heavy’ fatigue I know it is time to ease up and do something to recharge. Yes it is definitely easier to reach that hit the wall point now and I definitely know this is the point that I can not push past anymore. For me it is not so much because I have been too physical but that I have not been doing things that I feel good about.

No need to feel bad about it though, just recognise it is my reality check and time to look after me. I am very fortunate that the people who really matter to me DO (mostly) understand this too. 

@ Romla

Romla said:

 - it doesn't end for bc patients when treatment ends which one tends to think some in the community believe. 

So true - you can tell with the look on their faces but it's been what 6 weeks since surgery - you should be back to normal!  It keeps on giving but all that happens is you are compared to someone's Aunty or neighbour three doors up when in fact they have no intimate knowledge of what those comparos went through!