The Foxs Lady

thanks for your comments Jo.

My oncologist never told me anything about a prognosis.

He did say, that I should go home and do whatever I wanted to do.  Not to put things off but also not to panic.

My GP who is now my primary carer, said to me that it never really goes away, but we treat what comes when it comes and we monitor things to make sure we are informed earlier.

The initial surgeon I saw wanted PET scans and all tests done three monthly.

The second surgeon (who has never done surgery on me) suggested I just do nothing but recover for twelve months.  He talked about prolonging life for up to 14 years.

With my chemo brain everything has been challenging.

I found the journey with chemo a great learning curve.  I will tell you what I found useful as I am sure many others will as well.  What worked for me doesn't necessarily work for everyone.

I hope this is not too shocking.....but I would have given anything to have this knowledge before I went through the process instead of struggling to find out on my own. 

I was fortunate that I didn't have young children to look after.....and most importantly, I was able to stop work. 

So here goes:

1. pawpaw ointment to be used around your mouth and nose area - I also used the same ointment in the "nether regions"

2. strepsils to suck on when my throat was sore

3. chuppa chups to help gain saliva in my mouth when I felt like I was too tired to swallow

4.  I had hypnotherapy to ensure that I slept and I did - 18 hours a day minimum once the steroids got out of my system.  So usually day 3 to day 9 was sleepy time.

5. a note book and pen to have beside the bed so that if anything notable happened I could write it down, but more importantly as I remember something I needed to do, I could note it down so that when I was up and around I could follow it through.

6.  air conditioning of my bedroom so that temperature stayed the same (even if I didn't) and it also assisted in shutting out noise. 

7.  feather pillows (lots of them), feather doona and a dark room....I called it the cave and off I went.

8. Austar in the bedroom so that I had something when nothing was there and I could shut out noises from the outside if I wanted to.

9. bottled water to drink and drink and drink.

10. kleenex flushable wipes - big pack for my bathroom, but smaller one to carry with me....just for a softer care of the "nether regiions".

11.  stubby bottles of coke at room temperature....to rinse my mouth out when I got thrush in the mouth - this was unwritten advice I got from a chemo nurse. 

12.  sudoku (easy) or something - the book was carried with me everywhere and I wrote all of my messages in there, phone calls etc, and scribbled things when I needed to remember things. 

13. magnifying glasses from one of the reject type shops......I had only recently had my prescription glasses done but the chemo affected my eyesight and these cheaper options helped me to still see.

14.  put your mobile phone on silent and contact as many people as possible and ask them to text you rather than call.  Update them via texts.

15.  accept any help that is offered.  Don't try and be super woman.  I had one friend who watered outside plants for me before I even got out of bed.  The same friend used to call by the house the week I was cytotoxic and take my washing to her home and do it separately for me.  So a separate clothes basket in your bedroom is a good idea for that period. 

16.  an electric razor from Big W or somehwere so that you can keep your hair trimmed and tidy when you lose it.

17.  if you know someone who can knit or crochet and they offer to make you a beanie or two, then accept.  I got a black one and other colours so that I could still co-ordinate my clothes.

18.  Panty liners for the first couple of days after chemo when everything seems to melt. 

19.  a block of chocolate - just because

20.  I am a carer for my 82 year old Mum.  We had a cleaner in once a week for 1 1/2 hours to keep Mum's area and the main house clean.  My area was left to me.

21.  ear thermometer to monitor temperature

22.  a good A4 size plastic container with a well sealed lid for medications - and then a good felt pen to write on the box what the medications are for.

23.  If you don't get a port in then when you get the canula in, ask for a sleeve to be put over it to help protect your veins.....

24. When I was in my sleepy faze, I was never woken for visitors....unless they were from out of town.

25. Get some really long thin scarves and wear those around your head.

26. I rushed in and bought a wig.....and never wore it. 

27.  Clinical masks for when I used public transport and I was at risk (day 1o to 14 after chemo was my most vulnerable time and when I also felt really good). 

28.  If you suffer from cold sores or genital herpes make sure you get prescription for anti-viral medication. 

Hi, my name is Deanna.  I have been looking for a some sort of group online to join.  My family recently moved to Australia from the States.  My husband is an Aussie and I'm American.  We lived in the States for 23 years and decided now is a good time to live in OZ.  I am a 7 year BC survivor.  I was diagnosed with triple negative as well as stage III C, which from what I can tell is grade 3 stage 3 here.   I was the 3rd sister out of 6 girls in my family to be diagnosed.  4 of us have the BRCA 1 gene and 2 do not.  I've had 1 sister die from breast cancer 10 years ago.   We live in St Marys NSW.  Now that we are settled somewhat, I am looking for ways to meet and make friends. 

Hi ShereeJoy,
I wasn't offended at all by your prior posting, don't worry. Just feel for you that you have to go through it all.
I agree; I wished we could all take Herceptin or Tamoxifen and reduce our chances... but I also understand it that women on that who have side effects think that sucks; it does! Anyone with breast cancer has a chance of a recurrance... ours is just bigger :(
I will have a meeting with a genetic team in february; they only come up from Melbourne 4 times a year. I don't expect much from it, and even less reading the postings here.
Wished you were closer by, I could pop around and lend a helping hand... must be hard to miss your husband half of the time, juggle 2 young kids AND treatment. Hope you have lots of friends and family to help out. Big hug!

Hi Janey, I'm with you: I didn't cause my cancer! Maybe polution and our highly refined foods play a role, but not how I manage my stress or whether I had a happy childhood or not. I am NOT to blame. What I have in my own hand is how I cope with the diagnoses and the treatment, and I'm doing my best. That's where my responsibility lies.
I would love to catch up! I am in Albury/Wodonga (NSW/VIC border), where are you? Hope not too far away... Is there any way to contact one another without writing our (email) addresses on an open internet page? I'm new to this.
Good luck with your last chemo tomorrow; will you still need radiation after? Love to hear from you again.