What has helped you through your journey?

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

• 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).

• 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).

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

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.

• 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.

• 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.

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...

• 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.

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