The Foxs Lady
Comments
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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.
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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.
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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.
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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.
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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.
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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.....
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seriously an oncology nurse told you that you were lucky......she needs to change jobs.......
don't they realize that we hang on every word that they say.....it is better to say nothing than to use the word "lucky" with any part of a cancer diagnosis
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Great tips here, thanks for sharing. Sounds like you took really good care of yourself, good on you!
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Hi Jane, I would love to meet up too, if only you were still in the Byron area! I'm in Lismore. However, I get down to Sydney sometimes so maybe we could meet up next time I'm down there?
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You asked if there was anyone living near Albury/Wodonga area well I do. I live not far from you in Chiltern. Like you I'm a stage 2, Grade 3, No nodes TNBC. I was digonsed in July this year. Just started Chemo this week. 1 down 3 more to go. Atm I'm waiting on the gene test to decied what is next for me.
Take care
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Hi to everyone - I am amazed at some posts. Do we really have an increased risk of another cancer ? I was diagnosed 19th Nov 2012 and knew I was BRCA 1 .Stage 1 Grade 3 Bi lateral massectomy and re construction with tissue expanders on 28th Nov which hopefully get replaced with implants soon. My cancer was 18mm with no nodes and clear margins. I finished my chemo in May which was no picnic as I'm sure those of you who have been there know but to the new folk who are about to start it is doable. Just be kind to yourselves. No radiation due to double breast removal and hair has grown back really curly. If you read this smead I live 6 hours from Adelaide,so maybe when I have my implants at RAH , we can meet ? Hang in there all and huge hugs all round. Leanne Xxx
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Hi to everyone - I am amazed at some posts. Do we really have an increased risk of another cancer ? I was diagnosed 19th Nov 2012 and knew I was BRCA 1 .Stage 1 Grade 3 Bi lateral massectomy and re construction with tissue expanders on 28th Nov which hopefully get replaced with implants soon. My cancer was 18mm with no nodes and clear margins. I finished my chemo in May which was no picnic as I'm sure those of you who have been there know but to the new folk who are about to start it is doable. Just be kind to yourselves. No radiation due to double breast removal and hair has grown back really curly. If you read this smead I live 6 hours from Adelaide,so maybe when I have my implants at RAH , we can meet ? Hang in there all and huge hugs all round. Leanne Xxx
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My oncologist said go home and do what you want to do. Don't overdo it. Don't put anything off though that you want to do. Recover.
I did everything that they said. I said to my GP all I want is to be told that it is gone and it has gone away.
He reached across and said, you know it won't go away.
I was grade 3 stage 3 on diagnosis.
My oncologist said if it comes back (and I liked the IF part), then we are talking of prolonging life. The surgeon said that we can prolong life for up to 14 years so far.....but you could make it a record and go longer.
Who knows? God alone knows.
It caught me by surprise the first time.
I won't be caught next time. IF it comes back I will be so ready for it if....but once again I work on IF.
In the interim, I am recovering....slow process.
I will be doing all I can to get my body back into the best condition.
Until I got on this site, I had met 3 women who were long term NED with TNBC. That part was daunting, but no on this website, I am seeing more of them.
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My oncologist said go home and do what you want to do. Don't overdo it. Don't put anything off though that you want to do. Recover.
I did everything that they said. I said to my GP all I want is to be told that it is gone and it has gone away.
He reached across and said, you know it won't go away.
I was grade 3 stage 3 on diagnosis.
My oncologist said if it comes back (and I liked the IF part), then we are talking of prolonging life. The surgeon said that we can prolong life for up to 14 years so far.....but you could make it a record and go longer.
Who knows? God alone knows.
It caught me by surprise the first time.
I won't be caught next time. IF it comes back I will be so ready for it if....but once again I work on IF.
In the interim, I am recovering....slow process.
I will be doing all I can to get my body back into the best condition.
Until I got on this site, I had met 3 women who were long term NED with TNBC. That part was daunting, but no on this website, I am seeing more of them.
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Hi Leanne
Would love to catch up if able when you are in Adelaide in Nov. My treatment is being done at Flinders as I 'm about 1.5 hrs south of adelaide but as I work in the city Flinders is on my way home! I get surprised by each of our different treatments as I had a partial mascetomy not even suggested full mascetomy. I will be having 6 cycles of FEC followed by 6 wks of radiotherapy and hope to work when I can - although oncologist wants me to take 2 weeks off following 1st cycle. I will do what I can, when I can
I am being referred for genetic counselling so if I go for testing more surgery may be required. For now am focussing on start of chemo on14/10 - am putting together a care pack for me based on tips from all the lovely ladies on this site. I'm going to the LGFB workshop this Tuesday where I hope to pick up so more tips. Keep in touch as would really like to meet someone from Adelaide for catchup. All the best - Sandi (smead) xoxo
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