Kiwi ladies who need encouragment, but all welcome.
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Hi Suems, oh ok. interesting, about Dr Claire. I wonder why she handed me over to another Dr then, I liked her, hope this next one is nice, we are possibly moving away from Palmeston north and so will have to find another medical oncology doctor, looking at Tauranga, I wonder if they from here can refer me to somebody there. I guess they will know somebody who will take me on and a gp as well. anyway bed time. so hugs all
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Hi all,
Another question for you--I have been reading with interest about your scans. I will be in NZ during my "cancerversary" and was wondering what is the normal course of action there. Do NZ oncs give annual scans and tumor marker tests for stage 1? Or do they leave those for if you have any symptoms? I have seen two different oncs from different schools of thought, and one does routine scans/tests and the other does not. The second onc does not believe catching it early makes any difference in terms of treatment or outcome :-(. Not sure I like that.
Thanks! Kat
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Hi katcar001, in my experience they don't do tumour markers in New Zealand, maybe they do if you are more advanced than stage 11, perhaps some of the other ladies can advise you of this, but I know they don't do them for me. They also don't do the onco testing which is routine in other countries, another bone of contention. I think that when you find your Oncologist they will probably run some tests on you then? We do get annual Mammograms however. Like others have said, you have to be really pro-active in this country and push if you think something isn't right. Hopefully you will get a good Oncologist
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Hi Katcar,
I wasn't stage I, but found follow up appts were mostly routine blood work (not tumour markers, although my general practitioner did do those) and a physical- no scans unless there were symptoms- & yearly diagnostic mammograms.
If you get an understanding GP, or perhaps go private for an oncologist they may do more in the way of tumour markers etc.
I know it's hard, but they do say finding mets early doesn't improve outcome, you just know you are living with them for longer. Looking back, I'd say it's better to live as if you won't get recurrence & enjoy life to the full. IF it happens, face it then.
But at the same time you want confidence that you are being looked after so anything will be picked up
what a conundrum!Midnight, a move to Tauranga sounds nice. It will be a bit warmer than Palmy!
It's Friday again! Yahoo, then school holidays....
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Hi guys, I need some advice. This is what my life is like now, any little symptom I blow it all out of proportion. I have a red mark on my right boob (my good non BC boob). It's about the size of a 50c piece directly above my nipple and it's very red. No sign of a bite or anything. I've tried to calm myself down but I'm freaking out a bit. I noticed it last night when I had my shower. I put bactroban on it but it is still there today. I don't think it's gotten any bigger. I've decided to wait and see what it does over the weekend. I don't want to make a fool of myself and call the Manukau Breast Care nurse so I thought I would make a fool of myself with you guys first. What would you do???
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Sorry about your Dad Shazza. We have just been through that with my MiL who died last week. She was 91. Even so it is a loss and it has its impact on everyone.
Having real problems with my back and am in considerable pain. Docs can't find what it is. Having another injection into spine on Momday. Just fed up with pain and pain relief.
Big hugs to all
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Fizz get it checked asap. Don't worry about feeling silly better to be safe than sorry. I get anything checked.
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Hi Alyson & Donna.
I hope that red mark vanishes over the weekend Donna. Isn't it annoying what BC does to us- all that worry & it's usually ok....
I hope you can sort your back pain really soon Alyson. It's horrible bring in pain all the time
I'm waiting for my post-op (pleurodesis) X-Ray & follow up with dr. Always seems to be some appt to go to.....
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Hi all
Kat welcome. I am the old timer here. I cannot say anything bad about my treatment both private and public. Had Mx private and chemo and rads public because I was on a trial. I have had tumour markers done regularly and scans if anything is no right. And In the public system. I just say and they check but that is because I am what my BS stage 3D because I has another lump in the chest wall.any of the top docs here consider that U.S. docs over test. Our system is very close to that of Canada's and the same treatments are used. I know some of the girls on here have not had the best treatment. One of the reasons for our poor stats is the late Dx of Pacifica folk and there is a drove to get that earlier.
As you will be in Nelson you will have to go to Christchurch if you needed rads. I know this as brother and friend have had to do this.
Nelson is my he town.
Sorry about the rant. I am watching a repairman try to fix my dishwasher.
Shazza how are things going. If my BiL asks what we have done with X which was in MiLs house I just might hit him over the head with it. Well that is if it wasn't sent to the Sallies or gone to the tip. It just goes on and on.
Fix have you done something about your boob?
Hugs.
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Hi Alyson I'm going to leave it and see what happens over the weekend. I am a bit of a worrier and I tend to panic, then feel silly when it's nothing. I hope your back stops hurting soon. No good to be in pain like that. Nice to see you posting again, I often wonder how you are doing
I'm so happy it's Friday, I am going to have a big sleep in tomorrow. Take care everyone, Donna xxx0 -
Donna, I felt the same way about my SOB. I was sure that it was undiagnosed lung mets. Turned out to be a bad case of bronchitis. I am so glad that I got it checked out. And they were really quick to do so. If it worries you, make the worry go away by getting it checked out. I know that Kath Taylor at Manukau works on a Friday and she's full of common sense and has a reassuring manner (my experience anyway). Alyson, sorry about the back pain, any long term pain drains the very life out of us all. Hopefully you can get some relief on Monday.
My son is flying out to Woodbourne Air Force Base in Blenheim tomorrow for an 8 day under officers course for Cadets. Normally the attendees are 18+, so at 16 1/2 it's great that he was selected. They pay for flights and the accommodation is on base. Such an great opportunity for him. I've spent all morning running around getting him ready. Also, Lou just graduation her level 3 Travel & Tourism course with 100% and distinction. Very proud of my children, especially when they've had to deal with a hormone less Psycho Mum for the past few months.
Wishing everyone a relaxing, peaceful weekend
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Hi Nicki you must be very proud of your kids, and you should be. Graduating with 100% distinction is pretty amazing, and for your boy to have an experience like that is so cool, good on him. Especially considering with what's been happening at home, kids never fail to amaze me. I do know Kathy Taylor quite well as she was my BC nurse. I didn't have such a good experience with the Super Clinic and her though
I already know she would take one look at it and say wait until Monday, so that's what I am going to do. She is the one who told me not to worry about my Seroma which burst and put me into hospital on an IV drip. Hopefully it will be gone by Monday. Have a nice weekend, Donna xxx0 -
Hi Nicki you must be very proud of your kids, and you should be. Graduating with 100% distinction is pretty amazing, and for your boy to have an experience like that is so cool, good on him. Especially considering with what's been happening at home, kids never fail to amaze me. I do know Kathy Taylor quite well as she was my BC nurse. I didn't have such a good experience with the Super Clinic and her though
I already know she would take one look at it and say wait until Monday, so that's what I am going to do. She is the one who told me not to worry about my Seroma which burst and put me into hospital on an IV drip. Hopefully it will be gone by Monday. Have a nice weekend, Donna xxx0 -
Congrats on your kids achievements Nikki
My son brought home his report today- not so outstanding as your lot! He's been cruising a bit too much & needs to pull finger! Mind you my daughter's year 13 wasn't great either, but now she's really enjoying doing Engineering at AUT- so there is hope...
Found out I have innumerable mets to my pleura hence the pleural effusion. But my lungs are looking pretty good at the mo, fluid is still gone I just have to get my fitness back. I get really puffed walking up hills or doing housework etc
Hope you all gave a great weekend
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Kt1966 - I am speechless at how brave you sound in spite of finding out you have so many mets to your pleura. I appreciate your input on the scans and tumor marker tests. It truly is a conundrum. I wonder what my Mexican OS would say if I told him I was moving somewhere where they don't do them for early stage? I see him in a couple of weeks, so will ask. My MO in SF is definitely set against them but does want me to monitor my serum estradiol levels.
Aylson - Nice to meet someone else from Nelson! It's nice to hear you've had positive experiences and thanks for letting me know that I'd probably go to Christchurch. I am sorry about your MIL and hope your back pain resolves soon. Back pain makes everything more difficult.
Fizz - I will keep my fingers crossed that the red area is nothing concerning.
I guess things will get easier after this first year. I am trying to live as fully as possible. I just had a fabulous time in Europe with my partner. And I have many things to look forward to, including getting to know New Zealand!
Thanks much for taking the time to share your experiences and opinions! Kat
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Hi all, hope your weekends were good.
Had an onc appt today. I get to go to fortnightly blood tests, phew! instead of weekly...yippee!
Chemo on Wednesday. My hair is still hurting, more is falling out, but v slowly.
I hope your port is all ok for tomorrow's taxol Shazza
How are things looking today Donna- has the mark gone yet?0 -
I hope you really enjoy getting to know NZ when you get here Katcar. When do you get here?
Hopefully it will warmer & sunnier than now anyway
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Hi there all, KT that's good that you only have to go every fortnight now for blood tests. Sorry about your hair. I never had chemo so can't imagine what you guys have been through, and are still going through. My red mark is slowly fading and now looks like a bruise. I think I can feel a bit of a lump underneath it but don't really want to feel too much in case I make it sore. I'm just going to keep my eyes on it and if it comes back or gets worse etc I will call the Breast Clinic at the Superclinic. Hope everyone is doing well. Donna xxx
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Fortnightly blood tests - awesome less hunting for veins KT. Not to mention the hassle of getting the test done.
Fizz go and get that checked out with the breast clinic. My MIL had the same thing during her radiotherapy. She went back to the clinic and it was nothing. The worry is draining.
KT my hair hurt before it fell. I used to get my daughter to gently rub it, and even that hurt. It was quite short because I had shaved it, which probably made it hurt less. Mine fell out over a week period. I was expecting to wake up one morning bald, but it was a pretty progressive process.
My nails are dropping like flies. I was getting them done each fortnight for the last 6 months so I couldn't see how bad they looked, but now they are all falling off at the nail bed and simply look dreadful, so I've given up. Just shows how long the effects of chemo linger.
Have a happy day everyone.
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Wow, Nikki. Losing nails now! No fun. Hope they grow back real quick.
Hope everyone is good & keeping dry. Looks like we might get a nice weekend
Great, because I need to up my exercise & get some hill work in....might help me feel younger & more energised if I get fitter0 -
gosh it's wild out there tonight. Hope everyone is keeping safe and warm.
Chemo today and they decided they could use my port again which made things much easier. Good luck tomorrow KT for yours.
I'm another who really needs to up my exercise but I just feel to exhausted all the time. When I first started taxol I was walking 8 km every day but now I hardly do any. It seems I can go to work or I can exercise and as I don't get paid to keep fit work wins.
My son is cooking dinner tonight. He hadn't started when I got home at 7:30 even though he new it was his turn. I'm not sure he's even sure what he's cooking. Big sigh
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I hear you on the exercise front Ladies. When I exercise I hurt, when I don't exercise I don't hurt as much, consequently the sofa wins!
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Hi ladies, I feel so guilty that I don't do any exercise. It really bothers me and I always intend to do something about it but I never do. I know if I get BC back again I will blame myself and my lack of doing exercise (not to mention the food I eat which isn't always healthy). I get up at 5:30am for work every weekday morning and I don't get home until around 6:00pm or later, by then it is dark and I am knackered. I live in the back of beyond too. I know it sounds like I'm making a lot of excuses doesn't it? My parents just gave me an old exercise bike so I am intending on using that, but it's really old and despite the fact that my dad did it up for me (bless his heart) it sounds like a Boeing Jet taking off and you will probably hear me in Wellington haha! I'll keep you posted as to my progress.
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Yay Shazza, I'm so glad your port is up & running again! I hope you got dinner not too late
Oral premeds for me today, yippee. So good to be independent again.
It is hard getting exercise in winter. Love the sound of your exercycle, Donna. Hope it doesn't take off. The only kind of exercise I do is walking, I hate running.
My dd just sent me a pic of one of our cats- I'll try & post it here.
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I'm with you Donna - up at 5.30 a.m. and home around 6.00 p.m. absolutely knackered and the brain is non-functioning. Used to get up at 4.30 a.m. in the old days and walk then. Now too many dogs roaming around - and also lack of sleep thanks to Letrozole. Used to go to the AUT (North Shore) gym after work, but now have to wait around for up to 30 minutes or so before any of the equipment I can use is available. Would love a treadmill at home but my little unit is just too small (as is my bank balance). Should really try to start walking after work - at least its cooler at the moment. Pity you didn't live closer - we could egg each other on ;-)
Anne
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Hi all.
Nice to see you again Twofer. I can't wait for spring/summer- longer nicer days for getting out there & walking etc.
My hair is well & truly falling out now - what a mess- on my head, the floor, my clothes.... I'm going to hairdressers tonight (after her last customer) to get what's left shaved off. It's driving me nuts!
Catch you later
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Hi guys, hope you are all doing well. Yes Twofer if we lived closer to each other I would love an exercise buddy. I love that ginger kitty cat kt, I have always wanted a ginger cat
Sorry to hear that your hair is falling out You will have to have lots of nice warm hats, especially with the cold weather at the moment. I had to scrape heaps of ice off my windscreen this morning before my drive to work and before I could get to the end of the driveway it had iced up again haha. I'm feeling really good, my red mark on my boob has now faded thank goodness, this time last week I was in quite a flap thinking I had BC in my good boob. It's really surprised me what my imagination can do to me since my diagnoses. Any little ache or pain and I think it's cancer I am going to try and get some counselling, since it's being offered for free. Anyway, I hope you ladies are all keeping well, your families are all good and everyone has a nice warm and safe weekend. Donna xxx0 -
Great to hear the red mark has gone down Fizz - wonder if it was an insect bite? Don't forget to mention it at your next appointment though. My hair has thinned noticeably with Letrozole. I had lost a bit through menopause, but this is ridiculous. My hair is very fine so I have to load it with product. Yech. Have my next CT scan on the 17th and starting to get a bit of scanxiety. Hopefully my liver is just complaining at the Letrozole and the aching ribs are just Letrozole aches. This stuff aint for sissies !!!
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Hi Twofer I became alarmed at how much hair was falling out when I was on Letrozole as well. Thankfully it has stopped now that I am on Tamoxifen. I also had so many aches that I actually found it hard getting out of my car and standing upright. Felt like I was 90. You are right when you say this cancer journey isn't for sissies. They say things like this are character building but I don't need any more character thank you very much!!!
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Hi
Wasn't it a cold weekend! Cold this morning too, 0 deg when I went to work (first day back since pleural effusion)
Hope everyone managed to keep warm. Great timing to lose all my hair! At least I have some nice hats now, thanks Nikki!
Hope the scan comes out ok Twofer. I have one in about a month to see if taxol is doing the trick for me...
Cheers, kt
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