Post Chemo Life

Post treatment sucks big time. My brain is fucked and i barely know what day of the week it is. I find myself taking the wrong pills at the wrong time and I've even double dosed on some. I can't remember shit an often wonder what I'm doing. At 44 i feel like 80 in my body, every joint is stiff and creaky. Onc says it's from combo of chemo, zoladex, and the arimadex. I agree once treatment is done my oncologist no longer seems interested in side effects . At least we can come here and not feel like a hypochondriac lol. 

Totally agree @Zoffiel.

I am in a total state of confusion regarding the hormone therapy.  I probably will go back on it as I'm pretty much too scared not to.  It's so incredibly annoying that it's all a maybe and 5 to 10 yrs of feeling like shit may not make any difference to it coming back. It's also ridiculous being scared of your own natural hormones, 
  I feel I did quite well through chemo  (hot flushes aside) and I really had no problems at all with radiation but minor skin issues at the very end.  I have no lasting side effects that I am aware of from chemo apart from the sun sensitivity. Do I go for the extra small percentage from this or not???  I still have no idea nor probably will ever.  I guess I just have to decide whether I am going to kick my own butt if I go off and it comes back.  Even though it may have anyway, will I still blame myself..............hhmmmmm. 
A little more understanding and listening from some of the medical profession would go along way I feel rather than stats and the pure clinical side of it.  

Have a good weekend ladies.  I'm off to the horses, cattle, cowboys and hopefully dinner at the country pub!

XOXOXO

I keep a notepad with me and list everything as my short term memory is the pits. I am 2 years post chemo and although the brain thing is a bit better, its still not up to par. Eg: Caught 2 fish and filleted them. Went to cook dinner, only 3 fillets. One must have been left on a fish and went in the rubbish. Can't let it get to me, just soldier on.
Yes hot flushes still plague me hourly or half hourly sometimes. Just have to live with it.

A thousand thank yous for that comprehensive guide @onemargie. I am screenshotting it so it's easy to find & refer to again. You are a marvel and this forum is blessed to have you.

I feel a bit shocked by the betrayal of my brain but I hear you, and will strive to accept the memory issues, and accept that it will pass. I've always written a shopping list, and also jot reminders on it. I'll step that up.

I'm under a cotton doona, but Melbourne's getting cold now! I think this year we'll layer the doona rather than swap to the feather one. I think I'll have to step through all the hot flush aids and see what works. I thought I might start with a cooling pillow and see how I go with that. I will work with my GP on all this.

I'd forgotten about your nail tip. I'll have to wait until after the op (strict instructions to have no polish) but will definitely give it a go if they're still bothering me after that.

I think I've got the hang of the fatigue, I just have to concentrate on pacing myself. I need to rest after each 'activity'. A sit down on the couch or some quiet time in my room is usually enough. I'm pretty good about fresh air and a walk but thank you for the reminder. One day at a time continues to be an issue for me. I love a plan and it's difficult to sit in this unknowable timeframe. However I know I am being schooled hard by cancer in this, so I'll try and try again to be more accepting of my failings, to accept that it's going to take a long time, to not push too hard and be gentle with myself.

Thanks Margie, can't say how grateful I am but I can tell you I got a bit teary reading your response! Kate xox

@kmakm

The f*&%$*g hot flushes and sweats are the pitts.  Every so often I'd knock myself out with some diazepam or mersyndol just to get some sleep. The sweats backed off fairly soon after finishing treatment but the flushes continued for months until I took a break off the hormone therapy then they pretty much vanished over night.  I had an erratic eye twitch as well through chemo. It went as soon as I stopped. 

As far as the brain fog and memory goes. I remember sitting there trying to play a game of uno with my adult  children after AC .  Ridiculous. I could not concentrate.  It was like Mum its your turn, Mum we are going the other way now, my god Mum pick up two,  They didn't realize what was happening and thought it was a great joke. I cried and left the room.  . 
I too had sticky notes all over my desk at work. As soon as I put a phone on hold I'd forgotten who I was speaking to so I wrote it down as soon as they had said who it was.   I got lost in the shopping centre trying to get my christmas shopping done in a chemo induces haze and promptly burst into tears.  

If it's any consolation the fog had cleared a lot by half way through taxol, so that was about 6wks and was pretty much gone by the time I started radiation.  So all up 10wks. I was clear headed right to starting the hormone therapy.  Now that's another story. I had to set an alarm on my twin daughters birthday as I was so worried I would forget in the morning.  I didn't.
One of the girls on here recommended the "Elevate" app for the memory problems.  It seemed to help if I played it first thing in the morning and I do think the Vitamin B+c helps as well.

I didn't have any nail problems but the dry skin yes.  Aveno moisturizer has been the best one for me and I combine it with a bit of bio oil for the really dry bits. Again I think the vitamins help with this as well. (funny I was never a vitamin kinda person before this). Luckily I never had the severe fatigue.  But in my normal life when shit goes wrong...I renovate and that's exactly what I did. I think that actually helped me through because that's what I would normally do.  Everyone's different I guess.

As far as being dismissed by the Onco's, totally agree.    I don't think they get all the emotional side of this shit.  Their job is to recommend the best possible course of treatment to prevent it coming back.  They don't get that it effects every aspect of your life from skin and nail changes to your sex life. Which I would really like back!!! 

I had a ding dong argument with my onc at my check up on Wednesday.  I told him I've gone off Tamoxifen again. Three months is my limit before it starts doing my head in.  I was on my way to counselling as I had become anxious, moody and bursting in to tears at the drop of a hat. I knew I was on the verge of depression. So of course he recommends anti depressants. I go off the hormone drugs for a couple of weeks and I'm pretty much normal.  He says my side effects are extreme.  I tell him to google the studies being done on the toxic effects on brain cells that are being done in other countries and they really should crowd source to find out exactly what's happening to the people actually living this stuff and not just what the pharmaceutical companies list as SE and storm out the door.  Don't think he likes me too much anymore.  Too bad.  I'm sure he's forgotten about me 10mins later.

Isn't it funny that we don't think about all the good these hormones do for you before BC?  Bone, brain, hair, nails, skin etc.

Unfortunately, unlike Onemargie.  I do not accept a knew normal. It would be easier if I could I guess.  I have fought it every inch of the way. I want my old normal back and I'm damn well going to do my best to get it.!!  I have a lot of trouble accepting that I have to feel permanently worse after treatment and have to take more drugs to counteract other drugs. Still pondering whether to go back on them because right now I feel fantastic.

So that's my rant and I'll wind it up.

All the best for your surgery @kmakm. I really hope you do feel better soon.

XOXOXOXOXOX

True @Sister, that instance really takes the cake (pun intended #sorrynotsorry!). It is the gold standard of forgetting! I'm not feeling specifically worried about the operation, yet, but it is in the anxiety mix I know.

I feel a bit dismissed by my oncologist. And I'm starting to feel a bit annoyed, especially when I read examples here of how supportive and reactive oncologists can be. I know my issues are not serious compared to so many here. I really need to clarify what are the parameters of our clinical relationship.

@kmakm. So sorry to hear u are feeling like this. I may well be commiserating with u in the future. If u r anything like me u have the mindset with the chemo (well this is my expectation and I may well be proven wrong) that when it is done your body starts healing and everything improves, not continues to decline. I would definitely speak to your GP about your sleeping and anxiety issues. I think u said u have done counselling before - do u think some more sessions could help??  I wonder if some holistic treatments could help too. I go to a chiropractor and the business also houses an acupuncturist which I was will to take full advantage if it would help any side effects. I am earlier in my treatment yet so have yet to have the pleasure of some of these side effects but I can offer you big hugs and let u know I am thinking of u xoxox - steph

@kmakm...I feel for you, big time. My experience with this whole shitfest is this. As far as the chemo brain goes, by brain turned to porridge in a major way. I was reduced to bald headed tears in the bank one day after I completely forgot my pin number. I had gone into the post office to pay some bills, and the machine told me I had stuffed up with the number. So I went to my bank to see if they could help me. I was told that they could not access my pin number, so I asked if I could phone my husband. (I am the only person in the southern hemisphere who doesn't have a mobile phone). Well...under pressure, I couldn't remember his phone number either. I burst into tears, whereupon the teller closed her till, and took me into a cubicle...she's a sweetie who has known me as a customer for years. She tried to go about it by changing my pin number and essentially opening a new card, but would you believe, I needed my password to do this, and had no clue as to what that was either. What a cluster f**k!!! Eventually I got it sorted, but the result is I now have all phone numbers and my pin number written down on a piece of paper in my purse. (The pin number is the last four numbers on a fake name and phone number). I also couldn't remember the names of different things, and they were reduced to things like the clicky thing (remote control), the cutty thingy (scissors), the picky uppy thing (salad tongs), the pully outy thing (tweezers) and the sucky outy thingy (usb stick..it sucks data out of one computer and spits it out into another). For the terrible night sweats, I found that sleeping in the nuddy was worse for me, When I broke out into a sweat, the arms against my body and the legs against each other would become slick and almost oily and the bed would become saturated. I found a light cotton nighty, two sizes too big (from Kmart) were the best. As each became drenched, I simply pulled it off, blotted myself with kitchen paper (better than faffing about with a towel) then powdered myself with clouds of baby powder to remove the clammy feeling. By this time, I would be freezing cold, and so would return to my torture platform, also known as a bed, and start again with a dry nighty. Layers of bedding, starting with a sheet, and then a cotton blanket like the hospital ones, followed by a light doona and if needed a blanket too were the go. On my bald nut, I had a woolen beanie, which would also come and go as necessary. Nanna naps were de rigeur and were the only thing that kept me going. I would suddenly hit the wall, where even just sitting up was exhausting, so down I would go. I realise you have more family commitments on your plate than I have, but you gotta do what you gotta do. I cut corners on every thing that was not essential to life itself. Ironing was only for my husband's work shirts, meals  were frequently either frozen, take out or just quick and easy. My family wasn't going to die from malnutrition from crappy food for a few months... You have to make yourself a priority now, You can't look after them if you don't look after yourself first. I looked upon chemo as cluster bombs. In a military conflict, cluster bombs kill innocent civilians as well as the bad guys. Well the good cells were being smashed as well as the bad f*****s.  It will improve, much the same as early motherhood does. Those sleepless nights with crapping, piddling, spewing, wailing little babies does become a distant memory. Lots of hugs xoxo

Hi there @kmakm i finished chemo in oct 2016 and I felt EXACTLY the same as you.  At first I felt a bit vulnerable but relieved at the same time that I had finished chemo and although the chemo was a shitty thing I also felt very “protected” as such as I knew it was doing the job of keep the stray nasties away if I had any. Then when I finished chemo I thought just like you. “Time to get on with life and all it entails” but it’s not as simple as that love

i had bad memory issues for a few months after and constantly got the shits with myself and this shitty disease. I thought I’ve had the treatment so fuck off and leave me alone now. 

But i want to let you know how I handled it and to let you know it does get better. Firstly once I accepted that these are the side effects and this is how I’m going to deal with them it was better

1. Memory loss - accept that I have memory loss and accept I have to write everything down to remind myself. I used to have post its all over my desk at work when I first went  back. My memory is so much better now but I still use a list and write stuff down at work just for that reassurance and have stopped beating myself up for forgetting shit all the time as I just write it down and I still say I’ll make a note so I don’t forget. Also if I need stuff for home. I leave the empty packet or box in an enviro bag on the front seat of the car and then I remember to grab what I need and I’ve accepted it and fine with it now. Hubby also knows to leave the empty packet on the kitchen bench so ican put it on the front seat of the car. And I either write an old fashioned shopping list or use coles online as I can go check the pantry to see what I need too 

2. Hot flushes - I think I told you before I slept on a towel put the air con on and had a squirty bottle in my hand bag , in the fridge and by my bedside so I could spray my face when I had one I also swapped to a cotton doona rather than a feather one so it breaths better and I could cover up the bits that were cold and leave it off the body parts that felt hot. The feathers doona just felt too heavy. You can also buy those cooling mats I’ve seen them in the tv direct shop you can lie them on your mattress and just pop the sheet over the top I wish I saw them when I was going through the hot flushes. I told you too mine stopped almost overnight in July last year I thibk is a major contributor to your sleeplessness and you should definately talk to your gp about it. It certainly won’t be helping your memory either like @primek mentions too 

3 fingernails. - mine went to the shitter too during the taxol so initially I went and put the acrylic nails until the good new nails grew out and then upgraded to just gel polish to keep them strong. And I still do this now. I have two remaining dodgy ones but I use a lady that works from home and I have them done every three weeks so it’s way cheaper than a traditional nail bar and it helps heaps still now thsts for sure. Just helped with the tenderness immediately as I wasn’t bashing the tips of my nails on anything breaking them off and they were still tender from the neuropathy too. I didn’t have issue with the darkening with my toenails but still get the gel polish done on them every 6 weeks or so 

4.fatigue - I still needed a nap through the day for around 6 months later too. I remember whinging to my oncologist about it and he’d say “Margie it’s only been 6 months” he said that at the 12 month mark too! I see him end of this month again. It takes time to recover love I could only work part time to start with for that reason. I can go all day now no worries at work and feel great but bomb out about 7.30. If I need to go out late on a weekend I still need an arvo nap if I want to stay up! 

You can’t push yourself too hard too soon it takes time and the sooner you accept it the better you will be with it. That worked for me. It’s the new normal I guess is the best way to put it. Keep up the counselling if you think it’s helps but let your family know too you still need a hand this is an ongoing thing that takes time to get better. Don’t push yourself too hard too soon you’ll just get pissed off with yourself and that will fuck with your head too.

try and get some fresh air too and time for yourself each day I find walking my dogs in the morning alone helps me clear my head and plan my day. I still just take each day as it comes and am far more chilled out than what I used to be. If it doesn’t get done today I can do it tomorrow. Try not to sweat the small stuff love and just have a laugh when you have a brain fart that’s what I do now.  

You have your surgery to focus on now and get through so it definately is still about you remember that. Biggest hug. Margie xx