Kiwi ladies who need encouragment, but all welcome.
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It's really interesting reading yur story kruise, kinda freaky!!!
What do they do to test for the BRCA gene, I haven't had any mention from my surgeon about it, is it usually done after chemo??
Would be interested to hear about your spiritual signs - always interests me! I found one of my lumps after a group of us girls stayed behind after work one night (work as a bar manager), we started talking about boobs and things and my friend mentioned that she checks her boobs every day in the shower - well i proceeded to give her stick about it but something stuck in my mind and I checked myself the next night, found a lump and it went from there, I don't think I would have found that lump if it wasn't for her saying something - she's an angel for sure.
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haha, envious in the cancer ward!
Also wonder about longterm stress as a contributor/cause of cancer developing...
Can't wait until I'm finished with chemo, suppose I should embrace it as it's dealing to baddies, but it just doesn't feel that way.
To think that I've only just started and some of you ladies have already been down this path for some time.. I don't know how you do it.
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Hi midnight- good to see you pop in. I'm glad things are calming down & the truck business will end soon for you anyway. I hope your DH is feeling better.
Shazza I hope your port placement went well It will be 'good' to get on with treatment. I hope you go ok.
Yay, Kruise, last taxol on Friday- well done getting thru all that
Ange & Woody hope you are both coping ok with your chemo too.
I don't know about you, but it seems we are all too young for BC (damn shame anyone gets it)- most of us seem to be in our forties (or younger!)
We have a whole lot more living to do, so let's deal to it!
kt
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Too right!!
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I'll second that kt! or third it, after Woodyhollow!! Lol. I know that it's easy to get down about stuff when you just aren't feeling good - and unfortunately b/c treatment is gruelling really. It's a long process. Getting tired and feeling achy and becoming bald and overweight really doesn't make one feel a million dollars? Hehe. But yes I believe that no matter where we are on our journeys - or what stage our cancers are - we always have hope, faith and love. There ARE such things as miracles! And I believe that we are all learning on our journeys too - about how strong we are, who we are, what is important to us etc. I know I am not going to come out the other side of this exactly the same person that went in. I hope I become a better me :-)
Angestapp - my surgeon referred me to genetic services at the hospital because of the link with my Mum. I had to have a meeting with them and talk about all my family health history etc. They programme all the info into some computer programme and it spits out the likelihood of you carrying a BRCA gene mutation. If the percentage is greater than 20% they will go ahead with testing. I had had my first lot of AC chemo but she gave me the form for the blood test to do at same time I was getting my next lot of pre-chemo bloods done. She said if they decide not to test, the blood can be stored and used in future if any other family member developed bc. However I got a letter a month ago to say testing is underway so my odds must have been more than 20%. Blood sample has to go to Melbourne for part of the testing process so I'm not sure when I will get results.
Apparently last year every woman under the age of 40 who developed this triple negative bc was automatically tested for the gene - but the number who actually carried a BRCA mutation wasn't as high as they would have expected. Hence they have stopped doing that routine testing.
Yes Woodyhollow stress can definitely play a role. An older woman I know was told her bc was a result of stress. Prior to that her husband had been very ill and collapsing at work and they didn't know why and also they had a massive house fire where they lost everything - all their belongings.
Angestapp - email me on Spiritstatus@gmail.com if you want to find out more about all the spiritual side. Everything happens for a reason - certainly sounds like your friend at the bar that night talking about her boobs was certainly meant to get you to find the lump. Good that it worked and you took action.
Look after yourselves everyone and lovely to see you on here midnight. Thanks for starting this thread once upon a time :-)0 -
Even though I haven't been on this journey very long, I know that I'm changing. What blows me away is the support & most of all when it comes from unsuspected places, unbelievable. It has made me realise how important it is & how little it takes to help.
For me the stress was work related, being made to work in an office cubicle with someone who is a very unpleasant person for years & whatever I tried to change this situation, nothing helped. I guess my body just said, enough is enough, if you don't want to listen to me, I'll force you to stop. Well I guess that worked.
Haven't been back to work yet, but have said to my boss that I'm happy to come back, but I'm not going back in that cubicle, non-negotiable, find me another place to sit. So far he hasn't sorted it out..so I haven't gone back.
Do any of you feel incredibly hungry after the chemo? Whatever I try it just doesn't seem to satisfy me. And I don't feel like eating meat (but do like fish). Haven't put any weight on yet am I'm trying to keep an eye on that, so far it seems pretty stable.
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Hello Everyone
I feel yuck. My masectomy was nearly a year ago and i am still in chronic pain. I saw my surgeon 6 weeks ago and he has given me sevrodol and is sending me to physio. When the pain is under control he will redo my implant and construct a new nipple, as the implant looks very odd.
I thought by now this would all be behind me, but its not, its all I can think about daily. I feel worse than I did straight after my surgery. I feel overwhelmed by it all and I shouldnt because reading some of your other posts I am fortunate.
Best Wishes to all of you on your ongoing battle. I think I just needed to unload a little. All good.
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Patc - man that sucks that your in pain, i really hope that you can get in for surgery fast and get things sorted, I don't see how you wouldn't think about it daily when your in pain, chronic pain is a bloody nightmare and impacts on your state of being and happiness, wish i could give you a hug so giving you virtual hugs!!!
Woody, good on you!!! Certainly puts things into perspective doesn't it in regards to putting up with things that don't make you happy! Yeah I can eat for 5 people after chemo, the following week not so much as i have the metallic taste very strong and everything tastes like dry weetbix. Haven't put weight on, just maintaining - but I haven't been on steroids and can't eat sweet things anymore (taste vile).
My pop passed away last night, 93 - pretty good inning's - have asked him to put in a good word for me lol!
Happy rainy day everyone, I'm glad it's raining today, reflects
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Hi Pat sounds dreadful. I can't believe that they have left you in so much pain for so long, that doesn't sound right at all. I also don't understand why the pain has to be under control before they can do something about that, shouldn't it be the other way around?
I hope they get onto it soon and good luck with your ongoing battle!
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Patc - so since you saw the surgeon 6 weeks ago, the sevrodol hasn't helped the pain at all, or visiting the physio? Is it hurting on your actual new breast or your arm and nearby areas? It's a bit of a weird thing for the surgeon to say 'when the pain is under control he'll operate'. Pain is a subjective thing anyway! You could turn up there tomorrow with a big smile on your face and say you have no pain whatsoever and how would he even know?
Have you thought about seeing a naturopath or a qualified herbalist? They can do certain testing on your body and it tells them what you might be lacking in or suffering from and therefore what you may need to heal properly. Certain things are good for inflammation, others for infection, etc etc. I went to a lady before I started chemo and have taken some supplements throughout. So very lucky to have not had any colds or flus or illnesses in these 6 months. I believe anything and everything is worth looking into when you are not well or in pain and finding something that works or makes you feel better.
Woodyhollow good on you for standing up to your boss. Sounds like you put up with that toxic work situation for far too long. You are so right too about unexpected support etc from people. I have found so much support amongst friends and acquaintences. Very touching really. I have had one close friend who has stepped back a bit too - and have hardly heard from her throughout this - but you do hear about that happening too. Perhaps it's just her way of coping or not knowing what to do or say. Or the fact you can't keep up the same lifestyle as you did?? I don't really think about it too much though - enough other things to worry about. :-)
Psyching myself up for last chemo day tomorrow....am wondering if I should take something in for the nurses but wondering what? Baking maybe? Have got to know so many of them over last 6 months and expecially one or two whom I usually get. It's always difficult to get a line in my hand as my veins not that easy for them - so I tend to get the two older more experienced nurses looking after me. Oh well - maybe I'll have a look at some receipe books soon and get some ideas.0 -
Angstapp - sorry about your pop. He did have a good innings ... but it still hurts
Patc - sorry you have this pain. It does suck!
Kruise - whoop whoop finishing chemo tomorrow! Well done getting there!!
Woodyhollow - I was hungry too and sadly put on quite a bit of weight. It's the steroids they give us to help with the nausea. I thought I was going to get supermodel skinny, lol! Unfortunately I put on about 8 kgs.
Shazza - I hope you port surgery was easy and went to plan. When's your first Taxol?
KT - I couldn't agree more. We are all too young for this.
Midnight - nice to see you pop in.
It's been a yucky, rainy day here in Auckland today. Let's hope the weekend improves.
Take care all - especially those in active treatment.
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Kiwimum - I wondered about the hunger and the steriods. The only steriod I have is the dexamethasone, of which I have taken very little of and according to the info I can find is out of your system in 72 hours, so how come you'd still be hungry? Or is it the chemo itself? Because the anti-nausea meds didn't seem to do to much for me, I've decided to not have the dexamethosone & domperidone, only the emend & ondansetron and try ginger & seabands.
Kruise - what supplements did you take during your chemo? I'm taking quite a few, just from my own research & intuition: turkey tail mushroom, mycommunity mushroomblend, raw iron, raw calcium, raw D3, probiotics, magnesium, wobenzym & creon. Thinking of adding Milk Thistle again (stopped that before surgery) for my liver. I used to take a stack of antioxidants as well, but have stopped with those now. Oncologists don't like any supplements it seems. I fasted for the first chemo and did a low cal (500) for the second one and might try total fast before next one.
And you're right, I put up with that toxic situation for way too long, no wonder my body made me stop.
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Hey Woody, what does the fasting help with - less nausea?
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Hi
Wow, I'm glad the weather petered out before it got to us- looked pretty bad down south. I hope none of you were blown away or lost power
Patc, I hope your pain lets up soon... I don't know if I could stand it for as long as you have, can you go back to your surgeon & demand some help now! Sounds like something is not quite right there...
Best of luck chemo ladies
I hope you're enjoying your trip, Alyson- it looks amazing from your photos.
Work tomorrow- hoping for dryer weather! And for a better weekend. I'm trying not to wish the next month away waiting for my op- they just might postpone it again & I could be wishing several months away! (I hope not
)Take care
kt
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Ang, I don't know if it affects my nausea, because I've only ever fasted with chemo, only had 2 so far, so no real comparison, so not sure if it helps, the main reason I want to do it is because it apparantly increases the effectiveness of the chemo.
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Hi Ladies - hope you have all enjoyed the sunshine of late.
Woodyhollow - you asked about my supplements. I was under the guidance of my naturopath and also aware that I needed to keep stuff to a minimum. The oncologists had said that the only thing they really didn't want anyone taking during chemo was intravenous vitamin C or anything with natural estrogens in it (Black Cohosh?).
During the AC part of my chemo regime I would stop taking anything 2 days prior and up to 5 days after infusion to allow the chemo to do its job and work its way out of my system. With the weekly paclitaxel I would only stop on the day of chemo itself.
I regularly took Vitamin B complex, a trace nutrient synergistic multi-nutrient supplement, vitamin E, selenium, CoQ10, & Chinese black pearls called 'Shen Qi Da Bu Wan' (a codonopsis & astragalus combination - for immunity support). Occasionally and when I remembered I would take supreme greens, magnesium and iodine drops (in water). (Iodine drops are a natural antedote to radiation and radioactive treatments - which my body was still showing present after all the tests I had been through). During the paclitaxel I also took cranberry tablets and L-Glutamine. I also tried to have a fresh juice each day. Went dairy-free and red meat free for ages (some has since crept back in but about to start up again).
Now that I have finished the chemo treatments I have another appointment booked with naturopath and we are going to do a liver detox as my liver was complaining to us throughout chemo. She will also test me again for anything my body might be lacking in after all this.
I started trying to do what you were doing originally going by gut and intuition but was at common sense organics one day and their shop naturopath said to me - I know just the lady you need to see. Rather than trying to guess quantities and having a bit of this and a bit of that - go and see her and she'll put you on the right track. So I did and never regretted it. Funny thing was it was before I had my first chemo treatment and I was still humming and harring about doing chemo. She did all this testing on me and said 'do you want my opinion for what it's worth on whether you should do the chemo or not?' - I said 'sure' (absolutely thinking to myself that her being a naturopath and herbalist would say don't do it - I can give you turmeric etc) and she said 'yes - do the chemo. Your body is still showing that its fighting this cancer and not on top of it yet'. Apparently I kept testing up for many of the anti-cancer things. So she told me that after all my treatments she wouldn't expect that to be happening and could just use some of those things later as preventatives.
So I am looking forward to seeing her again in a few weeks. In the meantime I can at least start some of the diet stuff. :-)
How is everyone else doing?
Have you been watching the Americas Cup racing? That last race was very exciting!
My partner and I leave on Saturday for a weeks holiday in Hawaii. I am sooooo looking forward to it! Not so much in going over there with no eyebrows, not much hair and lots of extra kilos - lol - but everything else!!
Love and hugs to you all x0 -
Just back from a lovely weekend at Port Waikato, had never been there and what a neat place!
Kruise - thanks for your answer on the supplements, it's an interesting one. It seems that your naturopath came onto your path for the right reasons at just the right time. Haven't tried a naturopath yet, but a friend of mine is a herbalist & dowser and will probably be able to tell me if I'm on the right track. My oncologists don't appear to be happy with any supplements that I'm taking but that is too bad. As doctor Suess said:“You have brains in your head. You have feet in your shoes. You can steer yourself any direction you choose. It takes some courage to not always do as the doctors tell you, but unfortunately they are not always right.
I don't know if it is thanks to the supplements, but still feeling good, did a 2 hour beach walk the other day, no problems. Sticking to a good diet is hard though, isn't strange as we all know what is good but it takes a fair bit of willpower, if only the good things were as tempting to eat...
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One uneventful taxol down 11 to go. Love my new port it made everything a dream. Off to work tomorrow for the first time in ages as the effects of the Xeloda disaster have finally worn off. Hope everyone else is going well. :-)
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That's great you have had your first taxol Shazza. Hope you don't suffer too many side effects over the next couple days. I got really achy like flu symptoms after first dose and I remember the bleeding nose thing starting up quite early.
No America's cup racing today - too windy.
I'm going to go get one of my wigs trimmed up this morning. It's a longer hair one, but the bottom of it has gone all frizzy and horrible looking - so going to get a hairdresser to trim it properly as I know I wouldn't get it even or straight enough. I'll be able to chat to hairdresser too about a plan on what to do with my own hair in a couple months. I really need to colour it again at some point! It's come back white, blond and grey! I used to have dark hair. My partner is 11 years younger than me so I really don't like being this grey and looking like his Mother!! Lol
How are you going kt, Kiwi and Ange?
Forgot to tell you Woody that I also was supposed to take a probiotic morning and night thru chemo - but I kept forgetting! Going to start on that again as it may settle down my stomach.
Love to everyone?0 -
Hi girls
Day off today- and its a beauty (cold start tho)
I will be able to get outside to do mowing, weeding & other fun jobs! (Housework can wait for a wet day....)
Shazza, I'm glad your port worked well. I hope the SEs are minimal.
Hope you both are doing well with your chemos too Woody & Kruise.
Midnight- whats the new avatar- is it the truck that crashed into the paddock? I hear things are winding down with the business
It sounds like the washing machine is finished, so I better go hang the washing out...then its on to outside jobs.
Have a good day all
kt
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Hi ladies
What a beautiful day it is today in Auckland! I'm working from home today and walked my youngest + dog up to school this morning in the sun. It's so nice to feel the warmth! Bring on summer.
Kruise, yay Hawaii!! I've never been but all reports I've ever had from friends are that it's fab. I hope you have an amazing time! Good luck getting that wig sorted. My wig was a bob, and towards the end it was getting straggly and frizzy on the ends. I took it back to the wig place for a refurb, but it wasn't cheap.
We are on the countdown to a Fiji holiday. 2 weeks tomorrow we are off. I've been on Weight Watchers for the past month or so and am pleased to have lost 3 kgs so far. Weigh in day is Friday, so hopefully more this week. I've got 7-8 to lose. Today I'm happy to report that I had to tighten my belt on a smaller notch. The girls are tired and ready for a holiday. Only one week left for them.
Enjoy your day off today KT.
Shazza, I'm glad Taxol is uneventful for you. I hope that continues. I'm glad your Xeloda side affects are wearing off. Scary!
Woody, I've never been to Port Waikato but I've heard it's nice.
Go those Americas Cup sailors!! I felt quite sick watching race 2 the other day. I could barely watch with nerves. Thank goodness we won! Only 2 to go.0 -
Hey everyone,
Uneventful chemo is a blessing for sure, my hands have been suffering - are red and sore and peeling.
What a cracker of a day, it's so weird, wednesday's are my only days without kids (school and daycare) and I swear it has gone so slowely - loving it!! House scrubbed clean and tidy in preparation for next chemo, we can live like sloths next week!
Question for the ladies whose hair has grown back, how long did it take for your eyelashes to come back? It looks so weird without them!! I booked in today for the Look good feel better course and can't wait to do it!
Hope you've all enjoyed a sunny day, i've been trying to get my baldie tanned up a bit and get some color on my face.
xox
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Hi all
Ang - how long did it take for your eyelashes to fall out?? What about eyebrows? Mine are still all there as is some of my hair - even though my 13 yo son kindly said at the weekend that it looked like ork hair (he hadn't seen me for a couple of weeks). Wish my chin & upper lip hair would also fall out...I've booked into one of the LGFB courses as well, it sounds great.
Chemo next week and then I'm halfway done.
Starting to clear up here now, was freezing this morning. Can't wait until spring really starts.
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Hi there, he crashed into paddock,there was 150 k winds and he was going at least 10 ks over, no brakes applied and the truck was 50 metres ahead of trailer that was already on its side as you see in picture, the stuff on the ground is the freight, the fuel tank was dislodged out of it, so it was towed back by wrecker. that was that real windy day in masterton, three trucks went over tha5 day down there. but he should of been driving to condtions.
we given notice on all the runs, except the wanganui one, BIL wil do that one, so after november 30th is the last day. but no more drivers after that, they all been told, we have to give two months notice and the it goes both ways with contact firm we contracted to work for, yay. so we hopefully will have more relaxed life style.
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Hey woody,
My eyelashes didn't fall out till Taxotere, probably about 7 days after the first one - really weird as FEC caused all my hair to fall out on my head yet didn't effect the brows and eyes. I've got a light scattering of eyebrows - if i scratch them tho they come out to it's a no go zone!!! lol at ork hair! my kids tell me i look like Dave our bald neighbour haha.
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Wonder why you lose hair in some places, my arms have never lost their hair - weird! And I have no nose hairs!
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Just had a phone call from one of my oncologists and she said they recommend that I stop taking all my supplements bar the zinc & the calcium. She couldn't really say why, but just that antioxidants were no good...frustating as my supplements are not antioxidants, maybe need to see a naturopath now.
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Is that until after chemo Woody? I've booked myself into a naturopath after my last chemo.
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She didn't say, but I have an appointment with the other oncologist (there are two & they share the patients) next week and I'll ask more specifics then. I keep on researching supplements & chemo and come up with the same conflicting studies. Some, and they appear to be older studies, say that it contradicts the chemo, others say it benefits. It seems bizar that after so many years of studying cancer that they have no conclusive evidence which are supporting the chemo & which not. Of course there are a huge amount of supplements and different chemos & cancers and so a large amount of variables. Also, from what I read, it differs from oncologist to oncologist, yet the chemotherapy for breast cancer is often the same...go figure....I just get confused & frustated.
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As confusing and frustrating as a world cup yacht race, hope you get some good advice at your appt!
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