Here Goes
Comments
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As shitty as lows are on the BC rollercoaster, the highs when they come are all the sweeter by contrast. I'm glad you've had a good strong day. Ride that high into the weekend!
The ripple effect of a diagnosis is fascinating. Several of my friends have gone to get mammograms because of me, most for the first time. If your work is fully supportive and on board, it will do wonderful things for awareness, maybe some fund raising, and your experience could prompt others to get checked, and so possibly save their lives. Bewdy bonza @TabooGal!2 -
Hi @TabooGal all the best with your treatment. It sounds like you are doing really well. It’s good to decide how much you want to involve work in your treatment. I kept work informed at a certain level. I’d avoid involving the CEO too much unless she’s a good friend.
It can get very tiring explaining things to people at work all the time and when you are trying to get back to normal after treatment, it can be tricky if you’ve disclosed too much. Just decide how much you want to share. I’ve faced discrimination down the track. Also be careful about getting sickness certificates for too long as your work place can make you take the time off. It’s wonderful that your workplace is supportive and they may continue to be. x
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It's great to feel supported at work, isn't it? Good luck for Monday!1
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@TabooGal. I have tried to work as much as I can through this whole journey with surgery and chemo and like u, I have a very supportive work place. It’s the best feeling to have some sense of normality and it’s great to take your mind off things.3
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Hoping to have a good one TGal. It's off to a good start: the sun is shining, which always helps. Tomorrow is my birthday and the whole family is heading out of the city to spend the day at my Godfather's magnificent country property in the hills. He's cooking roast lamb for lunch. I'm going to breathe deeply in the fresh mountain air and hope that my niece and nephew don't spend the day fighting with each other. Enjoy your Netflix binge! What are you watching that is providing the best distraction?!2
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@Sister it sure is. It's like a huge weight has been lifted off my shoulders
@Kiwi Angel You're my inspiration for work. I cant believe how good it felt to be there. I know it's still early days and chemo may throw me for six but it feels good to know everyone understands and is supportive
@kmakm oh that sounds wonderful! Have an awesome birthday tomorrow! I am working my way through the Hunger Game movies this weekend!
@Rose18 I hear you. I have a wonderful bond with my CEO. I work for a Disability Employment Service where I was initially a client. Last night they were announced as finalists for Employer of the Year with the local Business Chamber. So far I haven't presented any of my medical certificates to them. The nature of the industry is very beneficial for me and also clients in my situation. By sharing my journey staff are able to understand what a client may be going through as well as well as offering ideas for support. I am an open book by nature which can be good and bad but it keeps everyone on their toes.
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Hey @TabooGal - I'm just catching up with everything that's been going on with you - sounds like it's all very positive - my breast cancer was also Invasive Lobular (we're a bit of a rare breed!) and as you know, I'm on the chemo path now - I must admit it's actually easier in some ways than I thought it was going to be. I might have missed it - do you have your schedule yet?
My hair started falling out in clumps last week (a few days after my 2nd treatment) and although I still had heaps of hair, I bit the bullet and went and got it all chopped off. It has been a bit confronting to be honest, but I know I'll get used to it.
I love the 'beanie' look though, so I'm thankful this is all happening in Winter!
Isn't it amazing when you have the back-up of your work colleagues?
I'm so so fortunate in this regard - I work with amazing, supportive people and have the flexibility of working from home - plus there are quite a few women at work who have gone down the breast cancer path also, so it's a double boost to have their support.
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@eastmum I just got back from my 1st appointment with Oncologist. She was wonderful and explained everything and even took notes for me..
I start AC Chemo on the 3rd of July. (approx. 6 weeks after surgery). 4 rounds/3 weekly. The dose will be high due to the aggressiveness of the cancer and also my BMI. Then RADs, I think 25 sessions (we will discuss that near the end of the chemo). Then a hormone blocker for 5-10 years.
I have just booked in with GP for Thursday to get Flu shot (as recommended by Onc.) I have bone scans Wed and Heart Scan Thursday so things may change depending on those results. (another app with Onc on 18th June to check those)
HER2 results haven't come back yet but with HER1 being negative she is expecting HER2 to be negative as well.
I queried about cold caps and she said even if the Cancer Centre had them, they don't work on A/C. Will organise with my Hairdresser to give me a pixie cut or a number 3 when I start as I am guaranteed to lose it all.
Gotta stock up on supplements like Olive Leaf Extract, Calcium + Vit D, Probiotics and a good thermometer.
I was grateful that my Breast Care Nurse was able to attend with me.
What sort of side effects have you had? Are you on AC too?
Now I know I am definitely having chemo gonna get a heap of scarves etc and start learning how to tie them.
Going to use this long weekend to go visit my children and Grandson in Melbourne. It was nice to know that with the chemo I wont be toxic to them, which was a fear of mine. I am getting a Grandaughter in early Oct.
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@TabooGal. So glad u have your plan now and sounds like everything wasn’t too overwhelming and I had some support there. Interesting that the cold cap doesn’t work on AC - in saying they though - I still have probably 1/2 my hair but I still have to wear a hat or baseball cap anyway. I think there was a discussion on here at one stage recently about how to tie the headscarves so that might be helpful if I do a search. Good luck with everything end let us know how u go with your further tests xoxox1
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@Kiwi Angel being armed with knowledge and information helped alot. Going to do some research on AC now.0
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@TabooGal. https://www.eviq.org.au/medical-oncology/breast/adjuvant
This is the site the professionals use and most likely any printouts of info u get will come from this site. Don’t freak out about the list of side effects as they are huge and everyone is so different with how they get affected. Xoxoox1 -
@Kiwi Angel thanks so much for that link xxx0
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Yep @TabooGal - I'm on AC also - and I was also told that the cold cap doesn't work on AC so I didn't bother going there - actually the hospital where I'm doing chemo doesn't offer the cold cap anyway. I'm doing my four x AC treatments two weeks apart - it was going to be three weeks, but my onc said he wanted to try giving it to me fortnightly to get it over and done with sooner - that is, if I tolerate it OK. After the four x AC treatments I'll have 12 x taxol treatments weekly, then radiation and then years of hormone therapy to look forward to, just like you!
Are you going straight from AC to Radiation? Or will you have Taxol after AC?
Just before I started my Chemo I started a discussion thread called Chemo Here I go http://onlinenetwork.bcna.org.au/discussion/18682/chemo-here-i-go#latest - it really helped me to read everyone's experiences and it might help you also. I totally understand that everyone is different and you can't rely on the fact that you'll have the same side effects as other people, but it just helped me to get a 'bell curve' of a wide range of AC experiences together and definitely gave me the knowledge and information to go confidently forward - made it much much less scary.
So far, it's been OK - for me, it all seems to be effecting my mouth and my head more than anything else. So my mouth feels like a disaster zone with ulcers etc - my tongue feels sore and coated and really dry, and my teeth feel 'fuzzy'. I find it difficult to get enough saliva to swallow easily and drinking water does absolutely nothing. I was a 2 litre a day water guzzler before this and now I can't even drink a whole glass as it tastes really weird. I've had a full on craving for orange-juice which is really not good because of the sugar content so I'm trying rather to drink tea and instead, I'm eating 2-3 whole oranges a day - still a lot of sugar but definitely better than drinking gallons of OJ plus I get the fibre value of the fruit. Other than that I've just felt really light-headed and the best way I can describe it is that it's like 'really bad jet-lag'.
My AC is on a Tuesday and I've been able to go to work the whole rest of the week, laying low on the weekend straight after, and pretty good in the week between.
After my first AC I developed febrile neutropenia which landed me in hospital for a couple of days - turned out just to be a normal cold virus, which is not dangerous but I still had the cold and cough going into my second round of AC and they say that days 7-10 are the most likely to land you in trouble with low white blood cell counts etc - tomorrow is day 7 and I'm just praying and praying that the cough doesn't turn into something more sinister - I SO don't want to land up back in hospital. I'm lucky that I can work from home so I've decided to stay in my home office for the next few days and closet myself away from the cold and rain outside and all the sick people at work ( I work in a school so lots of sick kids!).
My hair started really falling out on Friday last week - about 3 days after my second AC - before that it wasn't really shedding much. I decided to get most of it cut off on Friday but haven't gone for the full shave - I think I'll let the rest of it just fall out. You might find that you don't want to cut it all off until it starts to thin or shed. I'm not really into scarves but really like the beanie look and I've bought one full wig and one half wig that's just the hair at the back and a detachable fringe, which looks great with the beanies. I've also bought a few lovely soft, bamboo beanie-type turban style caps - they're so comfy and great to sleep in.
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@taboo girl - u are more than welcome. I have found it quite useful and also has the hormone blocking drugs on there too. Happy researching xo0
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