Posted by Shazinoz on 21 Apr 2012, 10:59AM
I thought I would start a post to see what has helped people through their journey, so that maybe something might help others.
I will start with:
- Ahh Bra Type tops - I found these great post op and still now, they are comfortable, and great.
- Calypo Icy poles (the mini ones) - I have found these great for my VERY sore tongue.
- Mini spray perfume - I got one of these for my Mum who was VERY self conscious after her chemo made going to the toilet smelly, She used it as a toilet spray when out. As was recommened on another post - (DO NOT use your favourite perfume smell, just buy a cheap one you can stand the smell of. If needed).
- Waterless Hand Sanitiser - I use this all the time when out. I try to keep my hands as clean as possible.
- Vitamin E liquid capsules - I use these on my scars, simply pierce one capsule and rub the contents on yuor scars (once they have healed of course), it works great, and is VERY low allergy.
So there is my first couple of contributions, I hope one or more helps somebody else, and I hope other will add too.
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Oh yeah and
Comments
XLeonie
* My 3 beautiful children... Not only are they my reason to fight... I'm so proud of how they have handled everything. I never thought I could love them any more than i already did...Im the proudest mum in the world and nothing picks me up more than a cuddle from them.
* Accepting that I was just unlucky and never asking " Why me ?"
* My sense of humour... Breast cancer can't take that away... I find something to smile and laugh about everyday no matter how small.
* Sharing stories, giving and receiving support, knowing I'm not doing it alone on BCNA.
Mel
hi all well l would have to say putting things kitchen wise down to were l could reach them as only 5foot 1inche the cupboards on the best of days are high so after op on right side for breast cancer this was a big help .
making sure that someone undid lids or the milk for me when l first started getting use to my left hand three ltre milk full is very hard to lift in the early days and being pigheaded (me) l spilt the milk many times even now if my right side is sore or weak l tend to drop spill things.
also having plenty of ice in the freezer nice and refreshing, and a bucket for my feet in the hot flush s cold water and ice fantastic cant get enough of it
Dont fill the kettle with too much water, it makes it too heavy and is dangerous
*My fantastic, beautiful family. Husband is being funny and so supportive. He makes me laugh when I am a "bumbling mess". And my two courageous boys helping out with washing, cleaning (ever seen an 11 year old try and vaccuum... so cute),cooking (12 year old thinks he belongs on Master Chef), and other chores. Love them to death..XX
* My mum, who is coming to stay with us for a while from Adelaide. We live in Brisbane. She will be such a joy to have here.
* The fantastic ladies on this website, for the encouraging and courageous blogs they write. I truly love you all XX
What has helped me through.
* My gloves, I have gloves everywhere I have to put my hands in water, near the garden should I decide I have energy to pull a few weeds, etc. etc.
* My antibacterial hand wash which I use 50,000 times a day cause I am so concerned about getting an infection.
* Hamilton skin active Urederm cream which I put on as often as I can during the day to counteract the washing of hands and to stop them drying out, it really does help.
* Heel Balm Gold and my socks which is put on every night before bed as so easy to get cracked heels and infection set in.
* Rinsing my mouth 4 times a day with 1/4 tpsn baking soda or salt in a cup of water for the ulcers and coated yukky mouth.
* My usual strength, stubborness and independence which all seem to have wained a bit at present BUT I know it will be back soon.
* My wonderful, loving, caring and supportive family, freinds and neighbours who are always there if I need them.
* My beautiful breast nurses, chemo nurses and fabulous doctors so far on my journey.
* My precious "Golden Girls" (my chickens) who give me so pleasure to sit and watch for hours.
* Most of all is my precious precious dog who is my velcro dog. She is by my side day and night and gives me the most unconditional love and kindness anyone could ever give.
My list is long cause there is so many things we need to help us fight this, survive this and just get through every day.
Mich xo
*
Good advice
Hi Mich,
I haven't had chemo yet but once I do I will be rereading all that good information you have shared thank you.
Love vicki
What a great post to make!
Not to repeat on what everyone else said :-) but...
Its mainly emotional stuff & I do think if you dont deal with your feelings at the time it makes the whole process longer and harder.
Ahhhhh bra's
Hi Sam,
I haven't seen the ahhhh bra's that do up at the front, where do you buy them from?
Love Vicki
soft bras
Hi Vicki,
I found David Jones has soft bras that do up at the front, they are by Amoena, and are called Mastectomy bras. They are really comfortable and as I had a mastectomy they didn't rub on the scar.
Hope this helps,
Jayne
Grocery shopping on line. They deliver it to your kitchen. The only thing you need is energy to put it away
Had to laugh - I went crazy for Callipos and handsanitiser during chemo, and have been thrilled to discover the Ahh Bra!!
Incredible support from family and friends was number one for me, but I also loved:
- the amazing array of DVDs loaned to me throughout treatment (I got through several fantastic series and had a seemingly endless array of movies)
- Trips to day time movies during the miserable days of chemo - boosted my spirits and were usually almost empty, so I didn't worry about sitting close to people with sniffles!
- Long, long walks with my iPod.
-$12 Vegetarian platters at my local Lebanese restaurant - delicious and packed with anti-cancer super foods, so I could treat myself and feel virtuous simultaneously!!!
Stay warm...
What have others found that have helped them, no matter how large or small or odd. Add them to help others with things that can help them.
Some things that helped me
* Reaching out to support people and services - discovering amazing friends
* Keeping choices and decisions in perspective - taking time to work out what was right and best for me and accepting that there is no expert who has all the answers in any area of breast cancer
* Celebrating milestones - however big or small
* Making each day count - destressing daily - getting outside in the fresh air
Four years on and I'd have to say, with a clarity of it being like yesterday:
* My beautiful labrador who didn't mind if we only got 100 meters on a walk and had to turn around - he made me get out in the fresh air every day
* Tea! Strong, black and plenty of it
* My friends who would check on me, visit, leave sticks the right length for the fire and cheerful reading material
* The garden, it's my sanctuary. It's the place I feel most connected to, a place to get lost in.
* Oats - raw oats, cooked oats, any way oats! At the end of chemo the only thing I could eat, along with aspargus (I grow it) and eggs fresh from the hens.
Stay strong.
some things to pack and do for Hospital Stays
I have a great list of things to take to hospital that I should find and post here for those who have yet to have their surgery (lumpectomy,mastecomy, revisions, reconstructions or infections etc etc). Will post it here as soo as I find it. OK I found it. But decided to make a separeate post with this stuff in it because there is a LOT of stuff.
See that list at Things to pack and do for Hospital Stays
What a great blog
Things that have got me through:
My wonderful new husband who never stops reminding me that he loves and married me and not my breasts.
My gorgeous daughter who cleaned and watered and did all the things I couldnt do for so long.
The best boss and workmates in the world, who let me come back in my own time and tolerated my ups and downs.
Learning to ask for help which I found INCREDIBLY difficult.
And the wonderful staff at the Cairns ROQ clinic, so caring and human in their treatment of me.
Hope all goes well for all of us from here on,
Vicki
What great suggestions from you all! Love the sound of the aaarrrr bra I've been thinking about getting one and you've twisted my arm..
Here's what's helped me.
This wonderful site where you can just be yourself warts and all
Longs walks with my cheeky jack russell terrier. He"s such a funny dog and I adore him.
My family, close friends and work mates.
My medical team and nurses at mercy breast clinic and the mercy hospital. More recently Peter Mac
Bandanas and scarves. Love that it's getting cooler and we have all these choices, plus scarves are such a fashion accessory now.
Bottled water.
The occasional glass or 2.. Of wine with my friends.
Eating what I want when I want.
PJ's!!
My iPad, notebook and phone
Internet for when I want to research stuff. Try to avoid being doctor google though.
Learning to say no to going out for dinner with friends too much. I'm better in the day but come night time I like to rest and have me time.
Taking small trips interstate to visit friends. It's been a huge tonic for me.
Being open and honest with your feelings. It's ok to be vulnerable.
Love Donna xx
Donna
Here! Here! perfectly said in your blog... :)
Love to you Julie XX
The Fan Club!
Always have a hand-held fan at the ready to help with those hot flushes. After my treatment I met so many women having hot flushes we started a group called The Fan Club - and we all regularly used our hand-held fans! Just pop one in your handbag - easy.
Probiotics for tummy problems and thrush. I found yoghurt every day wasn't enough, especially as I have been on antibiotics for so long doesn't help.
There is a probiotic that doesn't need to be in the fridge now which is great so you can take it with you if travelling and having to stay over somewhere for treatments etc. or just to have it on your bench for when you take your other meds in the morning.. I just take one a day.
Mich xo
Fantistic Blog
As many ladies have said.. this web site is fantastic.. the blog is another great idea ..
My 'Chemo Kit' - gastro stop, coloxyl, bonjela, carb soda, nail polish, paw paw cream, panadol, nilstat (mouth drops) biotene mouth wash, soft toothbrush, bland toothpaste, scaves and night caps, hand cream, mint lollies, giner beer... haven't use it all yet... but I have everything in a box waiting 'just in case'...
My husband and son... as well as telling a couple of 'school mums' who have offerred their help...
My Ipod - I've downloaded music to walk, relax and just listen to... as well as a couple of books and a movie.
but most importantly the supportive people I've met on this web site. The 'been there done that' group and the 'going through the same thing as you group'..
Great ideas
Most things have been covered already so my only additions are things I still do 6 years post surgery:
Ditto - Bio Oil
Ditto to the Bio-oil. It's been a month since my surgery and I've had one chemo treatment... I use the Bio-oil on my scars, the dry tissue on my breast and then I rub it into my hands and finger nails.. what a difference.
I'm also using Billie Goat Soap Moisturiser on my arms and legs.. it's light and has a pleasant but does not have an overpowering smell.
Something that is helping me through at the moment is my bath. I have a bath with epsom salts to try and help with the pain. I also use it as a destressing time. I make sure water is high enough so when I am laying out flat my ears are under the water. It blocks out all sounds or muffles them to be a nice sound and then I just chill, totally relax, concentrate on my breathing and I feel wonderfully refreshed and renewed after my bath.
Mich xo
great helpful info
what got me through...
my husband and a sense of humour. He made me laugh every single day no matter what.
BCNA's My Journey Kit - so much in there that was invaluable.
Connecting with other bc patients
Pre-chemo 'treat days' - the day or evening before each dreaded chemo day, we would go out... for a meal, a movie, whatever. really helped.
Sparkling plain mineral water with lemon or lime and ice, for when I could not tolerate the 'taste' of tap water due to wacky taste buds
Ditto the hand sanitiser, bicarb mouth rinse, dark nail polish to reduce nail damage, and many of the other practical tips
Hi Neece
The sparkling mineral water sounds like a good idea, will definately try it. As me to... the taste buds are horrible. Plain water to me tastes like salty water.
Julie XX
Water
Hi Julie, I found drinking through a straw solved the issue of flushing out the chemo with water. I would fill my water bottle and "suck" away making sure that I had at least 6 containers a day. XLeonie
Pre-Chemo Treat Days
Hi Neece
I love the idea of a 'Pre Chemo Treat Day'... looks like Pizza for tea tomorrow night!
thanks for the suggestion
Trina
I found during chemo that water did taste terrible for the first week so I went for things like choc milk or juice. It just seemed to taste better and it kept my fluids up. And definately bubbly water...it was almost like it cleaned my taste buds
Emergency Hosptial Bag
After my recent rush to th ER with neutropenic septicemia, a temp that reached 40.6C and a weeks stay in isolation...
At the last minute I grab other things like
etc, This made life SO MUCH easier, as I didn't have to stay in the gown, until someone could bring in essentials, and Hubby didn;t have to try to find where I (as he puts it) hide everything.
Post chemo helps
After Losing all my eye lashes and eyebrows post chemo, I wear lens free glasses . Dresses you up a bit so you don't feel so naked and protects your eyes at the same time.
Just discovered the genie bra. Got a target brand 3 for $20. Relief big time!
Joints are aching a fair bit so walk as much as I can.
I keep my calcium up with Caltram plus vitamin D
Look after your teeth. Pre. Chemo had a check up I advised that I was having chemo. They gave me a mousse type paste to put on your teeth when you go to bed. Strengthens your teeth.
Look good feel good workshop. Went a few weeks ago and you really do feel good afterwards. You also get a lovely show bag of cosmetics to take home.
Donna xx
great post !
* I found a cheapie Ahh bra, so if it gets wrecked or stained or whatever it won't matter - so comfy !
* Telling people what's happening has helped me, then they know what to say (or not as the case may be)
* Asking for help when I have needed it
I'm bound to come back and add more as I travel along ! Thanks.
Keitha
I have been lucky (touch wood), that I haven't had any mouth ulcers and apart from an issue with my tongue at the first cycle, my mouth has been good.
But I do work on it, I have found to try to keep things under control, and my mouth as safe as possible I do the following:
Oh Yeah and Biotene toothpaste. I found normal toothpaste too strong once I began chemo, the minty taste was too strong and felt like it was burning my mouth. The biotene is minty but VERY mild and is made for dry mouths etc. got samples of it from my chemo clinic along with Biotene mouthwash and a dry mouth gel.
Let me add
Family and friends
My 2 dogs who have become my shadows when I am not well, I can tell when I am getting better as they no longer velcro themselves to me.
My sense of humour
My journal, diary and computer
My juicer - if I cant eat I can drink the juice of all the veges.
Apple cider vinegar, honey, green tea, ginger, coconut rice, fruit and anything stir fry.
Organic home delivery - works out to be no more expensive than the supermarket and delivers to my door weekly.
PJ's - I now live in them. Have lots of bright colours and multiple sets (10 I think) they are just so comfy when I am at home.
Slippers and slipper sox ( I wear the sox at chemo when my feet get cold)
Caps, night caps, skull caps, beanies etc etc - all colours and styles. The more the merrier.
Biotene toothpaste and mouthwash, Baby toothbrush, Sorbolene and glycerine cream. Cetaphyl soap
My medical support team at HOCA Mater in Brisbane - super ladies and men
BCNA and all the wonderful people who are expressing their thoughts.
Oh and dare I say, all inane computer games that keep the chemo fog in check, whilst driving me crazy.
Hi Shaz
It is amazing when you think how particular you are about cleanliness/infections etc. and you still get carted off to hospital you poor thing. That isn't fair really is it?
Mich xo
Just the luck of the draw Mich.
There was no specific cause found for my neutropenic septecemia, so there was nighting I could have done to prevent it, it is just waht can happen when you immune system tanks and your neutrophils drop to zero adn all your other white cells drop low too, any germ then can be bad, something your breath or soemthing that has been in your blood or urine etc for year, could just flare up as your system can't hold it in check anylonger.
That is just not fair that the weed killer can do that to us. BUT if it kills all the bad cells I guess that is all that matters. Frustrating though when we do everything in our power to save us from getting neutropenia and then you get sick anyway. I hope you are well now Shaz and definitely on the improve. I have been lucky so far and I like to think the Neulasta has helped.
Take care sweety
Mich xo
What helped,
Laptop, wireless internet, this site including all the blogs, my husband, my kids, my two dogs, endless cooking was my therapy, my surgeon, my journey kit, breast care nurses, my best friend, family, my veggie patch, my juicer and my gut, we all have one. Trust it!!!
What didn't,
Advice and opinions from people with no idea, being told to be strong, visitors in hospital that stayed too long, constipation, constant questioning from others, drama and fuss.
Well said FD!
We are just doing the best we can but it's like we are under the microscope.. Are you sure you should be eating that or drinking that? The one glass of wine I've been able to stomach since chemo finished.. I've certainly tried to help my friends and family understand and I have had an impact in making sure my closest girlfriends have had mammograms.
These are ALL Great ideas...
Anyone got any other things that have helped them through their journey - from diagnosis, waiting, surgery, waiting, scans, waiting, reslutls, waiting, chemotherapy, radiations, hormone therapy, complementary therapies, ANYTHING to do with ANYTHING that has help you and might help someone else (EVEN one person) to make their journey even a Teeny Tiny bit easier.
I can add
Audio books - when you cant read or watch the television audio books are wonderful. I downloaded some georgette heyer romance novels and listened to them pre/post surgery and post chemo. Just the softness of someone reading to you as you drift off, and if you miss it you can always go back. Have some stronger audio books for when I am knitting etc, just to keep me company when the radio is not capturing my attention. Again just the pleasure of someone reading to me is relaxing.
Meditation/relaxation cd's - I have found some that really work for me. Took a few goes but there is a definant difference when I use them. One is a "boost your immune system" and I feel it is helping me. I am not sure if it is anicdotal but my bloods are always good when I use the meditation. Mind over matter perhaps. Also help me to relax when I am waiting for stuff to happen. Just when I am alone and feel I need to zone out abit from the cancer worry world.
Looking for a form of massage that will help me later. Not sure what will be too harsh and what is good? Also looking for resolution to the early menopause symptoms that just barrel on in. Any thoughts?
Remember the Fibre
Oh my gosh.. I have been very complacent with my 'fibre/water' over the last few days and have paid for it big time....
So... fruit..water..benefibre.. nuts.. etc.. little bits often is my 'reminder'.... otherwise it's the horrible stuff from the chemist... not pleasant!!!