What has helped you through your journey?

Posted by Shazinoz on 21 Apr 2012, 11:59AM

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.

 

9 members recommend this post

Comments

Shazinoz's picture

Oh yeah and

  • my journal, being able to write down anything I want to, about anything on this journey has really helped (as has being able to look back over it).
  • Keeping a side effects diary in a word document each day - Made life easier for my oncologist and me on Thursday because I could tell him all of my side effects no matter how small and what day they began and ended.

Comments

Leonie Moore's picture
  • "Finding" and connecting with other like minded beautiful people who are on the same journey
  • having wonderful support organisations like BCNA to empower me to be ME and allow me to be FREE

XLeonie

Melg's picture

* 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

robsue's picture

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

Shazinoz's picture
  • Cooking large meals before chemo, so that hubby has some easy meals, during my chemo. (Things like Lasagne, that are easy to reheat).
  • Accepting help - be it someone picking up something from the shop for me on their way to visit, or someone offering to take me out of the house for lunch etc.
  • Shaving my head - the BEST thing I did when my hair loss began, dealing with 8mm hair being shed everywhere is MUCH MUCH easier than dealing with 25cm+ longhair.

annie58's picture

Dont fill the kettle with too much water, it makes it too heavy and is dangerous

chipmunk's picture

*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

 

Shazinoz's picture
  • A terry towelling dressing gown - when I have my shower now, instead of drying myself with a towel, I simply put my dressing gown on (dry my feet & legs to the knee & wipe my "hair" with a towel) and then get on with other things - It is GREAT when fatigued eetc and also makes sure you aren't too rough onyour skin or anything. it works AMAZINGLY well. I wouldn't do it ANY other way now.
  • And if you can't dry your feet (or are having troubles etc) then try this trick that I was taught after my2nd knee reconstruction - grab a hair dryer and put the setting on Low and use this to dry your feet and legs etc - Being VERY careful NOT to burn yourself - especially if you have numbness, tingles, lack of sensation or anythign like that in your feet.
  • Sorbolene & Glycerine moisutriser - I slather my body with this after my shower, to keep my skin soft and supple and prevent dryness etc and it helps my chemo rash too (I seem to get ared a red spotty rash after chemo - sort of look like little red pimples of something).
  • A beanie/ Sleep cap - it is getting cold here now in Canberra and with my lack of hair (not totally bald yet, but close) I get a cold head at night sometimes. I got a free sleep cap from the LOVELY people at Heads Up @ Calvary (well 2 actually a thin cotton one and a thicker one, I wear the thicker one ALL the time - day and night, at home and out, it is VERY comfortable and warm. I also wear polar fleece beanies when out - Nice and toasty warm.

What has helped me through.

Mich x's picture

* 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

vickifletcher21's picture

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

sillysam83's picture

What a great post to make! 

Not to repeat on what everyone else said :-) but... 

  • this site 
  • meeting my friend jo davis (thru this site) who was around my age and similiar life situations, we were meant to meet thru this experience I believe, she got me out of the house, meeting new people & just made me realise kinda what I was going thru was just a moment in time. 
  • my online blog (which i have created this yr) 
  • my facebook private group for 'young women with breast cancer' (if you were diagnosed under 50 yrs old & want an invite message me)
  • my support group here in Melbourne. The best thing about breast cancer is meeting beautiful,strong women. 
  • Art therapy 
  • Meditation
  • Having me time... 
  • Being happy, fun & laugh 
  • My mum who is the most selfless person I know, she sacrifices so much just to make my life a little easier. 
  • My husband who is the most patient person I will ever know. 
  • My close friends who have proven to me why they were my close friends prior and after b/c 
  • Music 
  • ahhhhh bra's (or soft bra's that do up at the front if you cant get things over your head) 
  • getting mobile wifi dongle (to help kill time waiting at all the appointments) 
  • waterless hand sanitizers
  • My laptop 

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

vickifletcher21's picture

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

Jayne's picture

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

 

Shazinoz's picture
  • Nail hardener - I got a bottle of manicure Intensive Nail Hardener in my "taxotere" goody bag from my chemo clinic when I went in for my pre-chemo education session, and I apply it as recommended (every day for 3 days, then remove and reapply for a total of 14 days and then repeat). I do this beginning about 3-5 days before chemo and continue until the 14 days are up. This is supposef to help stop the taxotere from damaging the nails (and so far so good - no sign of nail damage).
  • Biotene Toothpaste & mouthwash - For the dry mouth and sore tongue - so far no ulcers (Thank goodness)
  • Homemade Mouthwash - bicarb and salt mixed together in hot water and then rinsed and gargled up to 4+ times a day (especially before bed/ sleep) - For dry mouth, sore mouth, ulcers, and to help prevent oral infections etc.
  • Soft toothbrush - I bought a large packet of about 6 for about $10 and I throw them out after each chemo cycle - to keep them clean and fresh, and to help prevent infection,so a new one every 21 days (so far 1/2 way through chemo and no mouth ulcers) toothbrushes can harbour a LOT of germs.
  • ANY food that takes my fancy - no matter how "unhealthy", if my body wants it and I can tolerate eating it, then I will buy it and try it (I am having a LOT of issues with lack of appetite, total uninterest in food, and smells of foods etc (Not so much nausea) - I have decided that ANY calories and nutrition have to be better than none and I can deal with any added weight gain (if this occurs) after I finish chemo etc. So If my body wants KFC or McDonalds, or chocolate custard then that is what it will get. (I am awaiting an appointment with a nutritionist though, to make sure this is OK :-) ).

Tania67's picture

Grocery shopping on line. They deliver it to your kitchen. The only thing you need is energy to put it away

Shazinoz's picture
  • Beanies - it is getting cold here in Canberra, so beanies are a great idea. I decided I didn't want a wig, and so use beanies and skull cap type headwear instead. I mostly wear, knitted beanies, polar fleece beanies, and a thing cotton sleep cap (to sleep in). I prefer the more fitted kind over loose kinds, but that is my personal preferance. I have some scarves and a turban as well, but thus far haven't worn them. I also am fine with being seen without anything on my head and believe that if anyone stares at me - THEY have the problem NOT me...
  • Bed Sox - I love these things, toasty warm and loose (they don't cut into your legs), you can even get ones with little non-slip dots on the bottom (I wear these to Chemo too.
  • Slip on Shoes & slippers - These are great when you get up , so that you don't have to fiddle putting other shoes/ slippers on. I wear a nice scuff type slipper around the house because the are easy to put on and take off, warm and toasty and have a hard sole protecting my feel from stepping on anything and potentially introducing an infection. I wear a pair of scuff shoes when I go to chemo, becasue I can kick them off dueing chemo and put them on when I stand up (To go to the loo etc).
  • Flannelette PJ's - Again it is getting cold in Canberra, so warm and toasty PJ's are a must. On days when the fatigue is bad, I spend ALL DAY in them (and don't care who sees me).
  • My new coral fleece dressing gown with hood - toasty warm and the hood keeps my little nearly bald head warm. I needed a new one becasue my old one was falling apart. I tred to buy a bew one before I went into hospital for my mastectomy, but you couldn't buy them in February (becasue it was the wrong SEASON). So when they came intot the stores I went and bought a new one and this one is great. Warm, loose, long and the hood is an added bonus as it keeps my head warm.

Liz in Darwin's picture

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...

Shazinoz's picture
  • A Dietician - (I have been having a bugg3r of a time getting an appointment to see one, and it seems that I had been classed wrong (was told there was a 3 month waiting list) as a low need patient when I am actually a high need patinet due to the chemo and the fact that I have no appetite and a lack of interest in food and have lost a little weight (only a kg or 2 in 7-8 weeks, but supposedly that is NOT a good thing, becasue you tend to lose muscle etc and not fat) I am hoping to hear back soon with a better time, so I can get some help with what to eat and when and supplements etc. ia mslo most likely anaemic. I was told to add High protein milk to my diet (this is normal full cream milk with milk powder added to it (600ml milk & 3/4 cup milk powder) this greatly increases the protein content of milk - I use it in coffee and in cooking and such - the recipe and other can be found in the Cancer counciles booklet "Food and Cancer").
  • Listening to my body - OK I know this one sounds like common sense, But... :-) Anyway now when I am tired I sleep, when I am hungry I eat (I also eat when I am not hungry and make sure I eat 3 times a day no matter how much I do NOT want to), If I crave a certain food I eat it and so on and so forth.
  • Flannel sheets - So nice and warm and snuggly. It is getting cold here in Canberra with temps down to 1 degree at night already on occasion.
  • Disposable gloves - great when cleaning or handling certain things - like raw chicken, doing my doggy clean up duties etc etc
  • Antisceptic skin wipes -I use these when EVER I caut a cut, or graze or ANY break in my skin (even a pimple that pops), to help prevent infection (I found great boxes of 20 wipes from my local discount store (1st Care - Antiseptic Cleansing Wipe) from the first aid section).
  • Numbing Creams and Patches - I was given EMLA patches and LMX4 cream (and dressings) by my chemo clinic to apply to my port site 1/2 to 1 1/2 hrs before I go in for chemo (1/2 hr for the LMX4 and 1-1/2 hrs for the EMLA) this makes accessing my port totally painless.
  • This website - it has helped me with answers and helped me emotionally, knowing that others are going through it or have been there and done that, really does help.
  • My local Breast Cancer support groups (Bosom Buddies in Canberra) - they have a buddy program, where someone who was diagnosed around the same age as you, but who has finished treatment (usually at least 2 years ago) makes contact with you, they call, visit, visit you in hospital, helping with helping you get any assistance you might need, or just offering support (they are even police checked <LOL> they haveto be to be part of the hospital visitiing team).
  • Meeting local women going through the same thing - especially women around my own age (I'm 41 yrs old). We are even going to meet up next week, for morning tea.
  • Make-up - I was never much of a make-up person but after being shown how to use it properly a tthe look Good feel better workshop and since losing my hair, I like to wear a litle make-up when going out now (it also helsp to cover up, when I have a chemo rash on my face - touch cwood this cycle, it hasn't gone to my face).
  • The Look Good... Feel Better Workshops - a GREAT morning out. Showing and teaching you how to look after your skin, wear make-up, and abotu wigs, hats and the like too. I truly recommend this to EVERY lady out there going through this journey.
  • An eye mask - great for cutting out the light when having a nap during the day, or when sleepign early at night.
  • Ear plugs - great for blocking out noise, when napping during the day or at night when partners, kids, or neighbours etc are keeping you awake with noise.

 

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

deh's picture

* 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

 

Anthea1's picture

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

Shazinoz's picture

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

Shazinoz's picture
  • Napping - The fatigue has been really bad, this 2nd cycle of TCH, and I would be done in without being able to have naps when I need them. If I do pretty much anythign I then need to nap for 1-2 hrs to recharge myself.
  • My Laptop & internet connection - where would we be witout our internet connections, and my laptop means I can bring the computer to me, instead of having to go to my computer. A real life and sanity saver.
  • My Dog - she is amazing, she knows when I am not 100% and gets all snuggly. She lies with me, next to me, or under my bed, NEVER on top of me (like she used to). (She is an AMAZING girl -  Boo (her name - as her pedigree name is STUPID - it is Dream On, and I am NOT calling her that) is a 9 1/2 yr old Norwegian Elkhound bitch, and our fur baby (child substitute) who has also been my assistance dog since she was 12 weeks old - to help me with my pre-exisiting medical conditions (although she has had most of this year off due to surgery and chemo etc).
  • My hospital bed & over bed table (hospital table) - I had severe side effects from y mastectomy and immediate slicone implant reconstruction (caused by my pre-exisitng conditions - this is is NO WAY a normal reaction and is becuase I was born with faulty connective tissue and nerve wiring), and was only allowed to come home from my 14 day hospital stay if a hosptial bed was delivered to my house (this is set up in our loungeroom), I was unable to get into or out of bed alone (even with the electric bed) for over a month - about 6 weeks) and still 3months later need the back up to help me (or I get SHOCKING muscle spasms etc), and I STILL cannot sleep flat on my back, I have to sleep in a slightly upright position, the bed makes this better, becasue I can change position to reliev my back etc as well. And now with chemo and the fatigue etc, having the bed makes life easier. It is on free hire from the local equipment loans service for 3 motnhs and they just extended it for another 3 months to take me through to 17th August (and when chemo is all over and done with) If I don't need it before then, I just call and they will come and pick it up and put it back into there hire pool.
  • The TV, and movies etc -  with chemo brain and the fatigue I am finding reading hard, because I get stuck on sentences and read it over and over and over.... again, still not understanding what I have read. TV or movie watching is easier, because I don't have to put so much effort in.
  • Meeting fellow Breast Cancer sufferers and survivors - ESPECIALLY those around my own age. I met some LOVELY ladies yesterday and we had a great time, meeting and having brunch together, and are going to do it again in 2 weeks time (we are all in our 40's - ranging from 48 to 41 (me the baby of the group so far ☺)). This really helps, knowing that other women are going through it and are out the other side (they have all finished their chemo and some have finished radio too).

What a great blog

Vicx's picture

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

donnar's picture

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

chipmunk's picture

Donna

 

Here! Here! perfectly said in your blog... :)

Love to you Julie XX

The Fan Club!

Kym Berchtenbreiter's picture

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.

Mich x's picture

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

justtrina's picture

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

Carol's picture

Most things have been covered already so my only additions are things I still do 6 years post surgery:

  • Bio-oil which I stll use occasionally  and
  • Extra chewing gum to help with that dry metallic mouth while on chemo and had made my teeth so nice with lack of plaque that my dentist now makes favourable comments - it means I get both a clean mouth & sweet hit to my mouth
  • company of a dog (at the moment Mum & Dad plus 6 Japanese pups I need to sell) becoming a fluffy grandma has been great - now for the real human ones in a few years!
  • exercise be it a short walk, post BC class or anything to keep you fit & healthy. Just take it easy while on chemo ecpecially if you lose feeling in feet and hands like so many of us did on taxol or taxotere

Ditto - Bio Oil

justtrina's picture

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.

Mich x's picture

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

Neece's picture

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

chipmunk's picture

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

Leonie Moore's picture

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

justtrina's picture

Hi Neece

I love the idea of a 'Pre Chemo Treat Day'... looks like Pizza for tea tomorrow night!

thanks for the suggestion

Trina

Tania67's picture

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

Shazinoz's picture

After my recent rush to th ER with neutropenic septicemia, a temp that reached 40.6C and a weeks stay in isolation...

  • An emergency hospital bag - with essentials like:-
  • pj's
  • sleep cap (if a nude nut)
  • toiletries
  • med's
  • book
  • something to do
  • treats
  • A zip through jacket, my hospital room was cold'ish, not cold enough for under the covers but too cold for just PJ top (especially is short sleeve)
  • a beanie
  • travel clock (why do hospitals NEVER have clocks in the rooms <Grrr>
  • Pen, notepad, blu tack (came in handy this time as a lot of the staff (except the nurses) kept coming in without there gowns and gloves and masks, and I had to keep telling them I was neutropenic and they had to wear them, even though there was a sign on the door, so I wrote another in bright blue highlighter and texta and blue tacked it on the part of the door you push to open it (after that EVERYONE wore the correct gear)

At the last minute I grab other things like

  • wallet/ purse (has my medicare card, and some cash etc)
  • my mobile phone and charger (you can't call out on the phones at our hospital, but you can use your mobile phone
  • My journal

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

donnar's picture

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 !

magicmum's picture

* 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

Shazinoz's picture

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:

  • I change my toothbrush EVERY cycle of chemo, so every 21 days - I throw my old one out the night before chemo (when i finish brusshing my teeth);
  • I use soft manual toothbrushes only (I bought a 6 pack of colgate toothbrushes for $10 at Big W);
  • I rinse my toothbrush in hot water before and after use (before use, it helps to soften the brush (and maybe kill off any germs) and after use to rnse and kill off anything from my mouth (hopefully);
  • I rinse my mouth everynight after brushing with a solution of 1/2 tsp salt and 1-2 tsp bicarb in HOT tap water, until it dissolves, and then add cold water before using, to make it palatable). I Rinse my mouth, 4-5 times, thoroughly and gargle to kill any upper throat germs 1-2 times, then rinse in cold tap water;
  • I do not floss (Dentist said that with chemo and mouth germs you can cause issues, by cutting the gums and letting germies in);
  • I also have some tooth moouse that I am supposed to use, whcih helps your teeth re-calcify etc while you sleep (chemo can remove calcium etc from your teeth - according to my dentist anyway). It is VERy easy to use (mine is called GC Tooth Mousse Plus and is Strawberry flavoured (came in lots of flavours), my dentists gave it to me(you brush your teeth like normal, apply a small amount to your teeth, with your finger, leave alone for 3 mins, use your tongue to spread around your whole mouth, leaving it for as long as you can (min 1-2 mins), then you spit out what is left and don't eat or drink or rinse for at least 30 mins DONE) - It says on the pack it contains bio-available calcium, phosphate and fluoride, provides protection for teeth, neutralises bacteria and acid.

Shazinoz's picture

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

serenity11's picture

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.

 

Mich x's picture

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

Shazinoz's picture

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.

 

Mich x's picture

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

FD's picture

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.

donnar's picture

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.

Shazinoz's picture

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

serenity11's picture

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

justtrina's picture

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!!!


Shazinoz

Profile

  • Gender:  Female
  • Marital status:  Partner (opposite sex)
  • About:  I live in Canberra with my defacto husband of 17 years, and our fur child (a Norwegian Elkhound) called Boo. I was diagnosed at age 40.

My diagnosis

  • Breast cancer experience: 
    I have been diagnosed with breast cancer
  • Diagnosis type: 
    Early Breast Cancer
  • Family history: 
    Multiple relatives with breast cancer
  • Diagnosis date:  22/12/2011

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