The Foxs Lady

I live in Heaven....and until I got diagnosed with cancer...I worked in Paradise....

What a beautiful part of the world.  I have lived here most of my life.

When I was diagnosed, my doctor suggested I go to the Wesley at Brisbane and get my treatment there.........and so the journey began.

1200 kms from home.

Lots of travel....and for the most part on my own.....

Hi Jacky....what a difference you and I have in our lives.  I live with my mother (as her carer) which is ironic.  My husband lives in WA (couldn't get much further away if we tried), loves his work and we get together when we can.  I have a son and his family within 7 kms and a daughter and her family 25 kms away.........so I have family.

In my case, the apple never fell far from the tree.

I am fascinated in the journey that takes people away from their homeland to come to a place like Australia.........and I often say....."why Australia"....would be interested in hearing.

There are all sorts of theories out there.....because we all want answers.  We all want to have a reason for why this has happened, so we can ensure that it does not get repeated.

If we did have the answers, there would be many who would try to discredit them.

We are all individuals.

If my cancer had to have a cause I would put it down to stress......years and years and years of being a workaholic and (in many cases) self-applied stress. 

The fact is that I have had cancer.......now I live with that....the tragedy (for me) would be if I started to worry about it and not LIVE this life that I have.

 

Hi Michellle...thanks for posting your comments.  I am interested in the double mastectomy and the hysterectomy......were these choices you personally made or recommendations that were given to you?

I was walking up to 5 kms a day and taking my little dog with me.  Out of the blue, with no warning, I developed bronchitis on the affected side of my lungs (not the other side and no cold beforehand).  Recovering from the bronchitis has been a slow process.....but I am coming out of the woods again, so hopefully will get back to walking soon.

I live in a small country town so when I walk, I pass a lot of "local" traffic.....a nod and a hello count for a lot.

Interesting to read what you wrote Deb.

I went to Brisbane for my first round of chemo.  I travelled down and back on my own.  When I got home, I went to "the cave" which was my bedroom area.  I "cooked" and kept cooking.  I took panadol for temperatures and kept monitoring to make sure I didn't get to the dreaded 32 degrees.

One night I went to the shower to wash my hair (still had it) to cool myself down and my temperature dropped down.........and then not long after rocketed through the roof.

I took some panadol and then noticed I had reached 32 so I drove myself up to the hospital.

The nurse monitored me and sent me home when my temperature went down (probably due to the panadol).

It appears that I was neutropenic for quite a long time but had no idea because I had nothing to compare it to.

I was too sick to drive myself to the doctors to sit in a waiting room of sick people to get some assistance.

When I went back to Brisbane they reviewed everything before the next treatment and THEN everyone sat me down and said, IF this happens, or IF this happens.....

Because I was on my own with no one monitoring things, I was in a very dangerous place. 

Chemo made me so tired that I had to remind myself to breathe. 

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. 

Fell asleep. Goodnight lovely lol

I am glad you weren't offended. I have been told I have 12-15mths to live so my prognosis isn't great... But I am a Taurean and don't give in too easily. I have to fight tooth and nail for these kids they are my world! As for the side affects for tamoxifen etc... Being round I get all of these side affects in full swing. I did get my period back first diagnosis but as soon as I hit this disgnosis I have struggled to get one period and the hot flushes are so intense. I think I have gone into full swing menopause and they say when it is forced when you are young like this it is very intense. And I am doubtful I will ever get them back this this time with ongoing treatment like this. I have just had my 21st chemo today.... And weekly is so so itense I have been in hospital so much since April so instead of 3 Fridays on, and 1 off a month I have now been changed to 2 Fridays on And 1 off and start Again with 2 Fridays on And one frlday off Again. His aim is to balAnce a better quality of life for me as time goes on as I am so sick from chemo and have had offer life threatening challengesimd a significant blood clot in left arm plus extemely low platelets causing Lots is bruising down my legs and most recently cellulitis in my Lynphaedema and was so close to going to septicaemia a bad blood infection. Some days I cask like a walking time bomb. Ok need to stop winginbb n

Jewel - so loved your post.....We have so much in common. I have these beautiful but wild siblings who indulge in all the vices I have avoided .....and I have spent years looking down my yoga polished nose at them, smugly rejoicing in my Byron Bay, yoga, vegetarian, organic, lifestyle. It was unbelievable to me that I was then diagnosed with such a serious form of cancer and my wonderful siblings are continuing their lifestyles healthy as oxes. I too am doing diet (kris Carr, Percy's Powders and everything green), exercising, yoga and making myself look for the joy in all the small things. I did FEC chemo for the first 3 weeks and was so so,sick. One day toward the end of the really bad 10 days, I went out into the backyard, sat in the sun and ate an apple. I cried with pure, unadulterated happiness and how good it was to just do that. Jacky - unfortunately I am staying in Sydney. But would so love to meet up as I think we'd have heaps to talk about. I do my last chemo tomorrow and then start radiation.....but would love to drive down and have a weekend in Albury/wodonga where I have a cousin and catch up with you. It must be so hard to have just immigrated and not have your family you poor darling. Please contact me anytime, I don't mind putting my email here - [email protected] Deannna - I am in Sydney and would love to catch up. Please email me and we can organise a time. Hope all is good for you and your family in your new home. Jane