Things you wish you had know!

Oh Nicole - how are you going? I know there is just nothing about - so our project will hopefully help patients in the thick of it - i think we have all been thorugh the murky waters of Whattt??? and finding stuff -t hese are great tips and I agree BC is an ordeal - its not a journey, there is nothing easy about it and its hard - and also I am a prepare for the worst and hope for the best - it has done me well from you are going to die to - guess what - we think you have more years! :-)

Amazing Tips!! Thank you... We are just putting the book together this week - will make sure I share it! :-) x

Just wondering if you've gone in for your operation yet? I hope all is going well and that you are recovering comfortably.

This is a great thread,  I've just got a few extra points:

• The hardest thing I had to do in this ordeal was to talk to both my kids (then 8 & 13yrs) about my diagnosis. The Cancer Council's book, Talking to Kids about Cancer was invaluable and helped my husband and I to work out how best to tell them.
• Both my children's schools provided practical help (meals, hampers, child-minding) as well as checking in regularly with both kids to see how they were going. This was a great support, especially during those tough months of chemo and radiotherapy.
• Learning to accept help is difficult but was the best lesson learnt and now I can pay it back.
• Learning to pencil in eyebrows is a new skill which unfortunately I still need to practise as mine are still pretty much AWOL even after 18 months of active treatment.
• Deep purple nailpolish hides all sins.
• Chemo stole my brain so am much more forgetful these days and sometimes struggle to find the right word for something. Am doing crosswords, puzzles, reading and writing to try and find it again.
• I found the Encore Program to be helpful after treatment as it gently improved my movement through water and other exercises, gave me an opportunity to talk with others in the same boat informally about bc and was done in a private session at the local hydrotherapy pool at the hospital so I didn't feel self-conscious about my lopsided swimwear.
• Weird side effect: iris colour has gone from "polluted blue" to "murky green". My eye colour always went green after a couple of wines, now they seem to be permanently that shade!
• Despite our best efforts, crap happens; eg after my first chemo I was hypervigilant about hygiene, temperature checking, sanitising everything etc only to have my son come home with chicken pox and so I landed in hospital for a week!

Jane x

Just wondering if you've gone in for your operation yet? I hope all is going well and that you are recovering comfortably.

This is a great thread,  I've just got a few extra points:

• The hardest thing I had to do in this ordeal was to talk to both my kids (then 8 & 13yrs) about my diagnosis. The Cancer Council's book, Talking to Kids about Cancer was invaluable and helped my husband and I to work out how best to tell them.
• Both my children's schools provided practical help (meals, hampers, child-minding) as well as checking in regularly with both kids to see how they were going. This was a great support, especially during those tough months of chemo and radiotherapy.
• Learning to accept help is difficult but was the best lesson learnt and now I can pay it back.
• Learning to pencil in eyebrows is a new skill which unfortunately I still need to practise as mine are still pretty much AWOL even after 18 months of active treatment.
• Deep purple nailpolish hides all sins.
• Chemo stole my brain so am much more forgetful these days and sometimes struggle to find the right word for something. Am doing crosswords, puzzles, reading and writing to try and find it again.
• I found the Encore Program to be helpful after treatment as it gently improved my movement through water and other exercises, gave me an opportunity to talk with others in the same boat informally about bc and was done in a private session at the local hydrotherapy pool at the hospital so I didn't feel self-conscious about my lopsided swimwear.
• Weird side effect: iris colour has gone from "polluted blue" to "murky green". My eye colour always went green after a couple of wines, now they seem to be permanently that shade!
• Despite our best efforts, crap happens; eg after my first chemo I was hypervigilant about hygiene, temperature checking, sanitising everything etc only to have my son come home with chicken pox and so I landed in hospital for a week!

Jane x

ouch ouch ouch ,suffering with jock rash (i think )on my bits,wondering if over the counter stuff will sort it ,any advice appreciated int his heat (

Wish I'd read all this before chemo.  And yes the Claratine...

More info on the dexies and emend before you get the side effects is the big one!!!  1st chemo(AC) most of my probs were from these - 2nd chemo thought Doc said I could cut dexies, so I did - in big trouble next chemo, no no take them just reduced dose!!!  Side effects HEADACHES, sudden big ones, sleeplessness, HUNGER, miseries. 

Constipation - For me I think caused by the dryness.  Cutting out my porridge and amping up the water and fruit and lots of dates (yum) helped me.

Don't overdo the mouth hygene, for me 2 mouth washes with bicarb in morn and 2 salt washes in avo helped, anymore seemed to make it worse.  Biotene toothpaste and gum were great though.

If the dry eyes and nose (ie they constantly run, yes like a tap) steam (over the pot of boiling water with a towel) relieved me, for a little while.  Wash your face often (the salty moisture dries and becomes crusty)  paw paw cream to stop chaffing, stuff the tissues put a roll of toilet paper in your bag it doesn;t cause as many rashes and those little bags of tissues didn't last one day!!

Listen to your body, I didn't realise for ages that the sore mouth was partly from the foods I was eating (toast, crackers, bread)  Soft foods eased it a lot.  And its not just your mouth, its your throat.  I couldn't eat anything pepperminty (just about blew my head off).  But I ate lots of salt!!!

The AC chemo I really breazed through (looking back) minimal nausea, tiredness etc.  2nd and 3rd week back close to normal.  Then came the dox/hercepton.  Oh my god !  Loved those dexies, would of taken more if doc had let me.  Have painkillers on hand - strong ones. 

Complain a bit more to doc if your feeling really bad.   Chemo 7 & 8, I was bombed, no recovery time.  So tired (slept 15 - 18 hrs daily) and so cold.  Ended up I had thyroid probs (new), count should of been 4-5, mine was 97....  Could of saved a lot of heartache. 

As we've all read there is a funny side to all this, you'll see it its coming.

Pam

PS Good points no hairdresser, waxing, shaving, bad hair days.  Most people are really nice to you, xtra attention in shops restuarants.  And pretty colored lights to watch at night when you can't sleep!!! 

I still have my chemo curl 18 months after my chemo finished. Its a funny looking curl, I am just grateful I have hair, so like you try and embrace it.

Donna

Well I'm a little late responding to this one...have been frantically trying to get a bedroom painted for my son who is 12 tomorrow. Atleast he knows I tried right?

So I finished FECD on xmas eve last year then had radiation for february, oh and that was after single mastectomy and reconstruction augusta 2013.

The best point I can add is: You just forget and then realise in the grander scheme of things 12 months on you are feeling ok, well as ok as you would expect.

* I did expect the worst during surgery...was in no pain really. Didnt even use panadol after first 3 days.

* I expected the worst during chemo, not helped by the 4 hour return trip to have chemo...but it was ok. I took the antinausea tablets routinely as the nurses suggested and didnt spew.

* I did get my hair cut short after my first chemo and 15 days later it was gone, and yes it hurt like hell when it was falling out.

* Im not a wig person so just opted for scarves, and probably now own way too many!

* My GP was awesome. They took me in back doors if I needed to go in, and saw me straight away. The chemist also became a very good friend!!!

* The medical system expect you to attend appointments during chemo for radiation even if you are at your lowest point in the cycle, it is fine to dig your heels in and not go, (insert 4 hour round trip again here), stuff can just happen when youre ready.

* those radiation tattoos actually hurt, and are also really evident when trying on dresses with deep v necks...I found that pearler out last week!

* My eyebrows and eyelashes did not disappear until I had completed all 6 rounds of chemo. I found this to be most distressing. Way more than the hair loss off my head. You've finished your treatment and you really look like a cancer patient when your eyebrows and lashes bite the dust.

* Its really easy to burn yourself when you have no body hair on your arms and legs. There is no safety warning that you are near something hot til your skin is melting. Its also really easy to continually poke yourself in the eye when your eyelashes are not there.

* the chemo fog took the longest to lift, and some days 12 months on is still around. Write notes if you want to remember things.

* radiation treatment is actually pretty easy, its when youre finished (and home - I had to go away for 5 weeks for treatment) that the fun begins...said no one ever! The blisters and burnt skin and peeling are foul. I travelled to NZ with my husband and 4 kids 2 weeks after radiation finished(not such a bright idea really) BUT the best thing ever for my skin was some Rotorua mud scrub and daily soakings in the thermal mineral pools. 3 days later, all burnt, blistered gnarly skin GONE!

* Tamoxifen - well Ive had all sorts of side effects, but most have gone...with the exception of the fact that it makes arthritis worse. I have spent winter (I live in the snowfields) with many days unable to use my fingers to do anything. There is no solution to this either apparently.

* and lastly, I have found great pleasure in joining the local gym in April this year. I have weights programs which were initially getting some of those displaced muscles working again, and just getting stronger. I was amazed how quickly I bounced back to strength. I was running 5kms within a couple of weeks, snow skied all winter with my kids, and just spent a week playing hockey at the masters pan pacs(belting the bejesus out of a hockey ball was awesome for increasing lymphatic fluid flow in my arm and chest).

* and one very last one: the chemo curl that everyone says will straighten out within a few months and you'll go back to having straight hair? Well it doesnt always go away. I am learning to embrace my 'fro', looks freaky, but it is what it is.

Hugs to you all.

Lisa