Un pc thoughts

MicheleR

@arpie, he is now. Change is hard for everyone. We let one of our children's room get ridiculous then we had to buy a new bed which necessitated removal of his stuff in another room. Normally I helped with clean outs but I can't this time. They are doing a big box together a night. Husband isn't here during the day and assumed I had time on my hands.i explained that most days I can do 2 or 3 small housework tasks and doing other things mean they won't get done. Ive since told him my life needs to change. Its an adjustment. 

Zoffiel

@MicheleR. The Cancer Card is a tricky one to play. A bit like The Joker, there are a limited number in the pack.
You can, of course, be playing multiple games with multiple players, or restart a new game with a previous payer. You've got to keep count of when you've played it and with whom. Sorry if that sounds strange, but it's the best way I can describe it. Taking advantage is wrong, but it is a genuine game changer.

Essentially, the Cancer Card gives you licence to say 'No'. Just no. No explaining, no excuses, no deals, no negotiation, no trade offs.

'No, I am not going to be able to do that.'

Sometimes we are are own worse enemies when we try to keep everything as normal as possible for other people who are resisting changing their behaviour to accommodate, in even the smallest way, our really nasty circumstances. It's always at our own expense when we try to appease these folk.

A reasonable 'No' will be accepted by a reasonable person. Mxx

Sister

@zoffiel - absolutely... Nearly 2 1/2 years out of active treatment and I still get so tired.  I have a finite amount of energy each day and it's no longer something I can push through. Work and kid's sports clubs always seem to expect a lot and I always try to help if I can.  I used to feel really uncomfortable and think that I had to explain to people when I was saying no (or I would try to do whatever it was, anyway).  Now, I just say "I can't" - if they want to push it further, that's their choice.

MicheleR

For me this is now about priorities. I feel I did not give priority to my health. I was busy caring for others and doing my job and what I needed came last. Quite often I was too tired to do things I enjoyed.

Now I have to make my health a priority. Others need to step up and help with the household organisation so I can have priority on things important to me and be healthy and strong. Im sure my husband would say he never said I couldn't do things but on the other hand noone did anything to lighten my load. He would like me to give him more time. I chose to work excessively also out of fear that I'd be judged and also i found it fulfilling, how could housework and meeting others needs at home continuously at home do that? I suppose there was a hole .

I am processing it all now. It is not im sure unusual. I remember this is my experience and others will learn how this new me will be when I work out what it is.

FLClover

Good on you @MicheleR! 

I’ve started noticing a pattern on this forum. One thing most of us have in common is that we overworked and always put ourselves last. Well, it’s time to change that and bring the focus back to ourselves. Give ourselves the attention and TLC we deserve, and not feel guilty about it 👌🏻  

Xxx

Cathyw

i hear you. I was told the other night I was lucky I had breast cancer...compared to other cancers...I was a bit speechless...we have things to deal with that not many understand, so it’s fine to feel how you feel, there’s no normal except your normal. I wish you all the best

Abbydog

I won't be popular, but as a woman currently being treated for Breast Cancer. I agree with the comment of the person who said ' lucky to have breast cancer....compared to other cancers. I suppose coming from myself is quite different than someone else saying it. But it is a thought that I have had.
We don't get to choose our cancers. But Ovarian, Pancreatic and Brain cancers generally have very bad prognosis from diagnosis. And for now there has been a good amount of research done on Breast Cancer, more to be done as well. Because it is so common, many treatments are well mapped. Frequently and of course not always, treatment is successful.

Afraser

I remember my surgeon’s nurse telling me, just after learning that my mammogram was suss and having a biopsy, that if you have to have cancer, breast cancer is the best one to have! Prognosis can be very good. Apart from anything else, breast cancer has benefited from a high level of funding for research. Early stage bowel cancer has a high level of actual cure, however. A reminder that for any cancer, early detection is the key. Don’t prevaricate, don’t hope the lump/funny texture/oddity will just go away. Check regularly. 

kmakm

My darling husband has taken to complaining about his hot flushes. I adore him but in that moment I feel very murdery... 

MicheleR

Maybe its in the timing, telling someone they are lucky to have breast cancer as opposed to other cancers in the middle of chemo or following painful surgery or invasive testing isn't terribly smart. 

Emotions are roller-coaster. I dont feel lucky to have or had cancer. I sometimes feel gratitude it isn't worse, that I found it, that there is treatment. I get the sentiment. 

Same with comments about menopause symptoms. Not fun. Not a joke. 

Dory65

Hi Team,
I'm feeling very un PC and ungrateful just now. Cynical and fobbed off too. IF I am to continue taking these FUCKING DRUGS which have aged me TEN YEARS in 12 months and will continue to degrade my body, mind and quality of life - I want to know WHY???? The next time I see my oncologist, I'm going in with a script, and I'd like you guys to help me write it. Not one of my doctors has addressed the crux of the matter, which is - if I do not put up with these shit treatments, how much worse off would I be - in terms of recurrence? How long can I (not the general population - FUCK their stats - FUCK "we treat 100 to save 1") expect to survive, with or without endocrine therapy? Can my doctors please take the time to treat ME and analyse MY BC, instead of napalming us all as a JOB LOT?

IF they say "well, we just don't know..." THEN WHAT THE FUCK ARE THEY DOING!!! 

MicheleR

Hi @Dory65,

Hard to know given dont know your circumstances. I tend to favour the medical advice however I'm with you on having time spent to address your concerns. I get 15 min with my onc prior to chemo. He runs through his list of symptoms and then ticks go. I dont blame him as waiting room and chemo rooms full but how I crave a relationship with the person in charge of saving my life 

I also question at times whether treatments work. The Web is littered with recurrence stories an im determined to make my body stronger to handle my future situation whatever it might be. There are services if you have health insurance extras which handle exercise medicine, counselling and physio, diet in one place for a more holistic approach. I think they also advocate for you. I cried my eyes out first session as I'd had oral thrush for 5 week and was miserable. Dr there mentioned a drug and hey presto my onc suggested in my next appt.  

MicheleR

@Dory65,

A Cancer Council nurse rang me Friday just out of the blue. You could try ringing there and explaining symptoms. The nurse who spoke to me was at pains to tell me I didn't have to put up with menopause symptoms and recommended several drugs to talk to onc/gp about.  They seem to be knowledgeable. 

Dory65

Thanks @MicheleR,
Thanks everyone for letting me vent.

Afraser

@Dory65
It’s unfair, it’s frightening, it’s disempowering - anything you can throw at it is fair enough. But the hardest of all is that your oncologist can’t tell you anything as hard fact. He/she can give you stats (been there), likely outcomes (there too), possible variations, but predict how a complex, and sometime unpredictable disease will manifest itself over time in one individual? No, we are not there yet. That’s not your oncologist’s failing either. Anyone who gives you an absolute answer is deluding you or themselves. And so some of the decision making rests with us. It does in so many things in life - it’s just that we usually feel better prepared for them. Let it out here, then consider telling your oncologist what your absolute priorities (make a priority list!) for how you live are. That might help both of you decide a path that you can accept. Best wishes.