Kiwi ladies who need encouragment, but all welcome.
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Hi Nikki, good to see your post. Sorry to hear the joint pain is worse on letrozole. I take Omega 3 capsules although my joint pain is fairly mild. My hands and wrists feel weaker and are sometimes painful. I've been lucky to tolerate cilazapril well apart from a mild cough now and then. What SEs did it give you? Fantastic that you've done the rehab and joined a gym.
I've worn contact lenses since I was 18 but now find my eyes are too dry on letrozole to wear them. They're also sore at times, will have to go to optometrist. Really sick of all these SEs! I'm actually enjoying this cold winter weather while everyone else complains about it!
My oldest boy turned 23 yesterday, can't believe how quickly the time has flown.
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Michelle, it made me really short of breath, so I decided it was better the devil you know and have stuck with my other stuff I was on. I think I will give the Omega 3 a go, because I have to do something. I am loving the cold weather as well, although everyone else is hating it. I still use my gel mat to cool me down when I have one of those moments :-)
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Hi ladies...eeekkk I feel so guilty I haven't been on here again for ages. I was driving home yesterday and just had a random thought about Kt and that led to wondering how everyone was and knew I had to get my act together and catch up etc. I guess like most of you I have been flat tack working lately and not much time for anything else. I've still been looking after the little boy with cerebral palsy and my Ambulance work. I've even had to start doing night shift on the ambulance which is a bit tough but then the days are so long too so it's all becoming a blur. Still learning heaps though. I have some shifts coming up with an Intensive Care Paramedic as my crew partner so will really be stepping up my game then
My trips to Shanghai and Las Vegas were just wonderful. I so recommend getting away somewhere for a holiday if you can. Even planning something ahead gives you a boost. I want to do something special for my 50th next year but also want to include friends etc so will have to think about that one.
Nikki you have done so amazingly with your exercise. Certainly puts me to shame. Well done!! I'm sure it will help going into your knee surgery. I hope that goes well for you and you recover quickly so you don't lose all that fitness you've built up. I feel like I'm just getting older, achy and fatter! Lol.
Michelle sorry to hear your eyes are playing up. Maybe the optometrist can help with some special drops etc. Happy Belated Birthday to your son too! 23! My oldest is turning 25 next month. My daughter who is 23 just got engaged after 6 months (she's the one with the Anxiety issues etc) but her and her bf not planning the actual wedding till 2020. Thank goodness
. The other daughter (19) and son (13) are just happy at Uni and school and working hard. Weather is a bit bleak here today with rain and low cloud but I'm just happy I have a day off and a chance to catch up with a few things. I really appreciate my days at home now as they are few and far between. It just highlights all the stuff around the place I've been neglecting though too! Lol.
I had my bc specialist check up plus ultrasound and mammo during mid July and all was good. Always such a relief. Next appt is with Oncology at Wellington Hospital in December again.
Hi Amusing, Helen, Donna and Kathleen and anyone else I've forgotten! Hopefully we can crank this up again for a while and catch up. Even if it's just to have a moan or vent or whatever. Or to complain about the prices at the Supermarket...but that's another story! Hehe
Take care everyoneXx
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A big hello to everyone - I have been lurking around on the different topic sites but just dont seem to have a lot to add. The last few months have been spent ticking of treatment options and 1st year anniversary milestones. So thats something good I suppose. On the 11th of August I had my last Herceptin so boy has that been a long year as I had to take a 9 week break because of the chemo cocktail I was on. So now Im just on Letrozole. Im really not liking the side effects (dry blurry eyes, aching bones and dry nether regions ew) but hope they will ease up a bit now that the Herceptin is finished. My hair has grown back grey and curly and I have just had a real bad haircut so will look at another hairdresser I think. My nails have grown back but are really horrible. I have a final oncology appt then back to the surgeon. But enough of that stuff.........
On the home front things have been pretty good. My daughter had her 21st and for the girl who knows everything ...well she doesnt. She opted for a family meal out and we had a couple of surprise guests which blew her away. Boy it was hard keeping people hidden but we did and the look on her face when we all got together was priceless. She and I had booked to get another tattoo and again when more of the family turned up it was a pretty neat day. Not quite your spa day out but fun none the less and not too painful. So in the pace of 5 months I now have been inked twice - not bad for a very conservative 53 year old.
We have booked a family holiday - to UK and Europe for a month over Dec/Jan. Its 4 months away now so I am getting pretty optimist that this time we will make it. Last years Melbourne trip was cancelled due to my diagnosis so we thought we would go all out this time. The planning has been great and also means we can focus on somthing different for a change. Would dearly love to win lotto in the meantime for a wee boost of $$ but what the heck we have some bucket list things to do. My 12 year old says he wants to go the a cafe like thay have on Coronation street and get a cooked breakfast. We can certainly cross that one off the list lol.
I hope everyone is keeping well. Take Care
Helen
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That's great that you are getting to do a big family holiday now Helen and also that you have got through all of your main treatments.Will you wear a compression sleeve on your flights? I have a friend on Letrozole and she reports the same side effects as you and is not happy about it!
Good to hear that you had an unremarkable checkup Kruise. And now you have a wedding to look forward to
I've just had my first anniversary of diagnosis and my first mammogram since then. Not much fun on the lumpectomy side, especially as they had to do 2 extra pics of it because the scarring is close to the chest wall and so awkward to wrestle all the bits into view! Radiographer was happy with them though and after a second radiographer checks them, I'll go back to see my bs and hopefully my checkups will go from 3 monthly to six monthly.
I now have a teenager in the house -DS turned 13 last week. He's already 5'10" and in a size 13 shoe. Eek.
Hi to everyone else, hope you are all keeping warm and enjoying the lengthening of the days.
Christine
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Hi to everyone, so great to read what you've been up to. And congrats on the one year milestones Helen and Christine. Your life sounds so busy Karen but really interesting. I had my annual BS checkup a couple of weeks ago, she's agreed that I will have a 6 monthly ultrasound and annual mammogram. Previously I was having an annual MRI too but not anymore because of the risks of the dye (gadolinium) to the brain and kidneys.
Helen how wonderful to be going on a trip to UK and Europe. Do you have any family there to stay with? Great to have a white Christmas. I've looked into booking houses on guesttoguest.com, it would certainly save a fortune on accommodation. You just have to make your house available too at some stage. Letrozole is a pain in the @&$% but I'm still taking it.
We have some daffodils growing in our front garden, spring is nearly here!
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Hi everyone! I just noticed some activity on here--wide awake here in the middle of the night in Mexico, lol.
It's nice to read up on your family vacations, Kruise's daughter getting engaged, Helen's daughter's surprise birthday party, and all the rest of the news and "all clear" cancerversaries.
Nikki -- Sorry to hear of your SEs from Letrozole, but it's great you are continuing your exercise program. I did not end up on Letrozole but Anastrozole instead. My estrogen finally plummeted to <10, so no ovary surgery, yay! Not many SEs so far but have only taken about 40 pills. I am getting some chin pimples, though, so I wonder what is going on with hormones?! Will have to check them again in a month. Still have the dry eyes, though (boo). I think that's more an age/lack of estrogen issue.
Other than that, pretty uneventful--clear mammogram and ultrasound. Oh, I did get brackets on my teeth, so with pimples now I feel like a teenager again, haha.
We are returning to NZ in Dec. DB bought a de-commissioned church in the Wairau valley, and he will be doing some additions to it over the summer. I will be in NZ the fully 90 days allowed. We have to look into getting me registered as his common law partner so I can stay longer next time.
I hope we can get together again before you and your families go on your summer holidays. I imagine we will be in Auckland in Dec., although I think we are going to Australia for a week or so then.
Going to try to get back to sleep now...
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Hi guys, sorry I haven't been around for ages, been busy with life and mostly ignoring cancer. I'm still doing well on the oral taxol trial. 80 weeks and still stable on it. I turned 50 on the 9th one of my goals when diagnosed Stage 4 was to get that far so I celebrated with a party and am off to Samoa tomorrow with a couple of girlfriends for a week.
Hope everyone is doing well. I will try and pop in more regularly
Shaz
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oh wow Shazza, Samoa that is wonderful! Hope you are having the absolute best time! And belated Happy 50th Birthday 🎂🎈🍾.
Kat the decommissioned Church project sounds interesting. What are the long term plans for it? Part of a vineyard or accommodation or just your little home-away-from-home?
I hope you can end up organising more time to stay over here. Though Mexico sounds great where you're at now - probably a lot warmer than here right now. Helen congrats on finishing herceptin and all that year of ghastliness. Your daughters surprise 21st sounded wonderful and so jealous of your trip booked to U.K.! Of course you will make it this time and all of you will have an awesome time. Onwards and upwards as we say!
Christine good to know you have made it through your cancerversary too! I can relate to your mammo ordeal. I had a lumpectomy also of my bc so they always seem to want to do more and last time I went they had upgraded to the 3D imaging machine so a lot longer in squashed position and it holds there and takes about 9 images in segments as it moves across. Sounds like your teenager is going to be a lot taller yet! My brother has size 13 feet and he's 6'5"...I'm 5'10" so I definitely reckon he's still growing
Michelle good that your checkup all good and the 6monthly ultrasound sounds good with the annual mammogram. It's amazing how fast those 6 months come around. Our daffodils at home haven't flowered yet but I've seen quite a few around the area. Plus the wee lambs of course. Somehow we always seem to get the worst weather in Springtime! We have just had rain, rain and more rain!
I'm at home again today and procrastinating on the jobs I need to do but better go get cracking on them. I have to empty out my car as it's going to the groomers tomorrow for a big clean and do some washing and tidying up. Always housework 😀
Hope everyone else is well. Take care x
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Well it's been awhile! I hope you are all doing well.
It's been quite an eventful few months with getting a wee holiday from the letrozole in late July due to horrible side effects - joints, hair, blood pressure, fatigue yada yada yada. Since going off it I have honestly felt wonderful, and according to my friends I look a lot better as well. The puffiness has gone from my face, I can fit my rings and have lost some weight. My BP is back down to a normal 120/80 from 180/160 ...... so big decision time. Sheridan Wilson wants me to be on SOMETHING as nothing isn't really a viable option, so I am going to give tamoxifen a go for a few months and see how I feel about it all, I can always go back on to Letrozole like Donna has done later on, or go on nothing and take my chances (?). Right now it's nice to feel like me for the first time in 2.5 years.
I had my new knee installed on the 7th September. Counties sent me to a private hospital to have it done and for that I am eternally grateful. What a ride that has been though, the recovery is very difficult and long. I was literally bruised from my upper thigh to my foot for 3 weeks. I am 5 weeks out and the bruises have fadeed. I am still not allowed to drive (it's my right knee). But I am not on crutches anymore and can generally get myself out to do the grocery shopping - although it takes a long time and is exhausting. I started back at work 2 weeks post op because I simply couldn't take any more time off. Thank goodness I work from home which gives me some leeway, because in between physio at Middlemore and doing my exercises every hour it's a full time job in itself.
Anyway enough about me ....... how are you all doing? I have missed you.
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Hi Nikki, great to see your post. The recovery from your knee surgery sounds really slow and difficult, I feel for you. Did the AIs contribute to your knee problem or was it arthritis? You may have said before but I've forgotten. How great to be on a letrozole holiday, I would love one! It's such a bummer that these medications have so many awful side effects. I'm on two BP medications now, luckily they don't seem to have SEs for me except a very mild cough at night. I've found a supplement containing Biotin for my hair, it may be helping a little.
I'm trying to do more walking, I enjoy it when I get out however all the wind lately puts me off. How is everyone else?
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Hi - nice to hear you are recovering from your surgery Nikki. That bruise is still massive! But glad to hear you are doing ok. I hope you find tamoxifen a better option. Lovely you got to enjoy the private hospital setting for the Op. I hope the shopping side gets less exhausting...is it online Christmas shopping then this year 😀😫Hi To you too Michelle - if I lived closer I'd go out walking with you! I have done a couple lately but need to make it a more regular thing. We had about 6days in a row of glorious hot summer weather so I was getting hopeful it was going to be a goody but back to wind and rain today. My Dad gave me his boat so my Hubby and I even got to take that out on the water last Saturday which I loved.
Hey to everyone else. Hope you are all going ok! x
Ps pic of Mana Island and South Island in the background at nearly sunset
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Hi again...it’s quiet here
How is everyone?
Hard to believe we are in December already! What is everyone up to for Christmas and New Year’s this year?
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Hi Everyone.
Thanks Kruise for the prompting. I have been meaning to post for ages, but haven't got around to it. Timely really as it will be a year tomorrow since we lost KT.
I have been discharged from physiotherapy at Middlemore after my knee replacement. Just about 3 months on I walk like a normal person. No limp to speak off. Sometimes she (I refer to her in the 3rd person) gives me a bit of trouble, but all in all it's probably the best thing I could've done for myself. The recovery was hard but worth every minute now.
I started on Tamoxifen on 28 October, and so far so good. I know that for ILC it's not as good, but side affect wise it's a breeze compared to that other brutal stuff. I have lost 7kgs, and have another (at least) 7 to go, but all in all I feel great. I know that Sheridan is going to want to shift me back to letrozole at some point but I'll worry about that when I have to.
Hating the heat at the moment - it's about time to get the pool out again!
xoxo
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Hi Kruise and Nikki
Good to see your posts. Can't believe how hot it is already! Have been thinking of KT and I wonder how her family have been getting on without her. Nikki so great that your knee's recovered and also that you're able to lose weight on Tamoxifen. Is the weight loss because of the exercise you've done or different eating habits?
I see a different MO on Friday, Dr Abbey Wrigley, as usual I have a few questions but I'm continuing with letrozole with many moderate side effects but not bad enough to want to change it. It's the 'devil I know' now. I'm looking for more work but trying to find a way to remove the dates on my cv as they totally give my age away!
Helen, have you gone on your UK/Europe trip yet? Great to have a white Xmas.
Would love to hear what everyone's up to.
Michelle
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Hi everyone, I was waiting to post after my 3 month checkup which supposed to be September and ended up being today. My surgeon is incredibly busy and I already had the prelim results from my mammo in August so I wasn't too worried. All good today so he will do MRI and ultrasound around July next year. Good to be on a longer time frame now.
Hi Kruise, Nikki and Michelle *waves*
Kruise - we are at home for Christmas as DP is working, but he has taken a good chunk of time off from the end of December so we will probably do a few 2-3 day trips. I'm singing the National Anthem at the Te Anau Rodeo on the 30th December so we may stay up there for Christmas Eve.
Nikki - glad to hear your knee is so much better and as for the weight loss while on Tamoxifen, that is really good going!
Michelle, just leave your birth date off. They will be able to gauge a rough idea of your age anyway from your work history.
Helen,I hope you are doing ok - please check in if you have time.
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Hello Ladies - good to read that everyone appears to be doing well. I too have been meaning to catch up but life goes on and time passes so quickly.
Well I finished Herceptin in August - think I put that already down the line..... Had my 1st three monthly visit which went well although I did leave the surgeons office feeling a bit miffed. When I had my mastectomy my surgeon has done a lovely stitch up job except for a bit of a flap which to be honest annoys him more than me. Well we made a date for me to get my port removed and he suggested that he tidy that messy bit up at the same time. I kind of said well what if I want a reconstruction and that took him back I could tell. He must have said about three times that I should be looking at quality of life and that it was going to be major surgery etc and that I had to think about it. He is such a quiet man I really didnt want to get into it so left feeling more was unsaid than said.
I do realise that my stats are bad but I would hate to think that should I be a long time surviver I could have had perky boobs for many years if you get my drift.
Any way my port came out on 14th November - brought it home in a jar for show and tell.
Letrozole sucks and to quote the surgeon "I find it very challenging" but the alternative makes it a no brainer. I just have to keep moving. I wish I could lose weight but its just not budging at all. I have been to the nutrienist at the hospital so hopefully that might help.
UK and Europe here were come in 17 days - I am so looking forward to the cold as this heat is just so hard to bear on top of the hot flushes. Cant wait....
Take care everyone - if I dont catch up sooner have a great Xmas and New Year.
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Awww great to hear from you all. I had been thinking of KT too Nikki...wasn’t sure of the exact date but knew it was around that time. We still miss her 😢. I have wondered also Michelle, if her hubby and kids are doing ok. Also if they are still in their new house that she never got to move into.
I was due to have a hospital check up early December but they rang me to say the onc was going to be away so made it the 14th Dec but I had to call them to say I couldn’t make it, and so I’m now booked in on 21st December. It was either that or May next year!!!
It has been very hot here too. A bit cooler today as there is a breeze. We are having friends round for Christmas drinks tonight and to celebrate my husband’s birthday on Monday, so looking forward to that. Well done on losing some kilos Nikki. I am still trying but not making much progress. Especially at this time of the year!
Amusing how fantastic you are singing the National Anthem at the rodeo - have you done it before? When you say you might stay there for Christmas Eve is it a practice you are going to then? Anyway I hope it goes well for you.
Helen if you want a reconstruction you should push for it. It’s what makes you happy too. Have a good think about it while you are away. Very exciting holiday though, enjoy!
We are going to Mt Maunganui for Christmas Day with my Dad and my Brother and his family. It will be lovely. Will stay on until 8th January.
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Hi ladies, a friend who has also had breast cancer shared this song with me and I thought you’d all appreciate it. You may have seen it before...but very touching.
Hopefully the link works
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It's been quite a while since any of us have written here. I hope you are all well and thriving.
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I kept checking to see whether anyone had replied- but no entries. Just thought to check again.
I am still doing ok just so tired! It must be age and hormones. Not even going there that it could be anything else!
Has anyone been following Amber’s facebook page called ‘When things go Tits up’. Amber actually messaged here on this group when she first got diagnosed at 26yo, She has had a local recurrence - even though she had the prophylactic double mastectomy with reconstruction. She had surgery today. I think she’s now on a quest to find out why the cancer has returned. It’s scary how there can sometimes be no reason why it just returns or happens in the first place.
Hasn’t summer been wonderful. Still adjusting to it getting dark early again. Will be time to get the winter woollies out again soon.
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hi guys. I haven’t been on much just been so busy. After 4 years of weekly Taxol I finally had some progression. I’ve started on letzerole and am hoping that will keep things at bay. So much easier than chemo.
Hope everyone is doing well.
Shazz
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Good to see you check in Shazza and Kruise. Sorry to read about the progression Shazza, I hope that the letrozole does it's thing and is easy for you.
I am still plugging away on the tamoxifen which I started after a three month break from letrozole. Although I think that Sheridan will want to put me back on the hard stuff soon. The tamoxifen has been pretty easy in comparison, particularly on my joints and feet (which were terribly painful), and I am not quite so tired. Still trying to lose weight though, which is an uphill struggle.
It's been 6 months since my knee replacement and it is simply marvelous. I now walk like a normal person with no limb to speak of. The first few months were pretty difficult but now it is awesome. I am going down to Rotorua at the weekend to walk 11k around the lakes. I hope I can do it.
Take care x
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Hi to everyone, great to see your posts. Sorry about your progression Shazza, I hope letrozole works well for you. My SEs on it come and go a bit, generally I've tolerated it ok for nearly 3 years, apart from needing to take high BP medication now. Hope your trip to Rotorua is fun Nikki and it's wonderful that you can walk easily now. Kruise hope you're doing well, thanks for telling us about Amber, how sad to hear this when she's not much older than our kids.
I'm looking forward to the cooler weather, in Auckland our summers last about 5 months now and this one has been really humid. Have been looking for more work lately and feeling like age discrimination is alive and well in NZ.
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Hello everyone from a blustery Invercargill. I have been meaning to pop in and say hi but time goes and I havent done a thing. Life here is pretty much back to normal for me now that we are back from holiday. Our month away just sped by and although it was in the middle of winter where we were, the weather didnt stop us at all from pretty much doing every thing we set out to do. I did however get the flu which was a real doozy of a flu, so the second half of my holiday was spent coughing and peeing my pants around Europe. But hey no one knew me over there so it didnt matter. And not many folk can say that was something they did in Paris...... I have just realised that I have only started to pick up in the last few weeks - so when they say it was the 8 week flu they really mean it.
Health wise I just keep boxing on as I guess we all do. I had a three monthly visit with my surgeon and that was uneventful. I do get paranoid about things though as I ask about scans and further teats even blood tests and just keep being told that its not an automatic thing to do. I am to go for quality of life and not think about the end game until I need to - and that time is not now. Things get a bit dark for a time before and after these visits but then life carry's on.
My life with Letrozole is pretty complicated. I am not giving up as I have been advised its my best hope for me - long term. During the day when I am moving I am fine. Standing up after I have been sitting is sore to get going but once I have stretched I am OK. The worst is waking up in the morning as mainly my hands and feet are agony. Hot flushes well thats another thing that is hard to deal with. Where I work have moved into a brand new building. Every single employee is moaning about the coldness of the air conditioning and here is me the only one out of 45 staff who has a wee fan on my desk as its that hot OMG. Eye sight blurry and we wont even go into my nether regions.
Enough moaning. My 17 year old son was very reluctant to go back to year 13 this year so we said that he could leave school if he got a job. So come 4th of March he is fully employed working his butt off. He is almost a different kid but the "teenager" in him is still there. So that was a family milestone.
Hopefully everyone is well and getting on with getting on.
Catch you soon
Helen
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I am not from NZ but have been in this beautiful country for the last 5 years.
I wanted to ask is anyone around here in Auckland CBD? I am currently undergoing chemo for TNBC. Finished AC and will start Taxol from Monday. I have not been to any of the support groups yet. I do not know much about anything happenning around here.
My journey to this point from when I found the lump has been to the GP to BS to MO. I have just showed up at every appointment. It took my mind quite sometime to catch up with all of this.
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Hi Frog-on-the-lilypad.
Welcome, and sorry that you have had to join. It certainly is a whirlwind at the beginning and during treatment, and for me it was a case of just doing it until treatment was done.
I am in East Auckland, and a couple of others in our wee group is closer to the CBD.
Nikki
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Hi Nikki,
Thank you for responding. Yes, it is so much of information overload and so many tests and waiting for the results. The waiting for the results has to be one of the worst parts. I start weekly Taxol from Monday. Bit wary of it. New set of SEs. 12 weeks seems such a long time. Then surgery and rads based on lumpectomy or mastectomy. The current weather has made me all the more depressed. I wish we had dry sunny days for some more time.
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Hi all
I am just checking in. Frog on the Lilypad. I am right near the CBD and would love to chat.
Shazza sending big hugs. I will PM you as i have a request from BCFNZ which might intrrest you.
Kruose and Nik hi and hopr you ate doing well.
Cancer wise I am fine nut have other health problems.
Hi Helen and Optimist.
Big hugs to all.
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Hi Alyson,
Thank you for your response. Let me get in touch with you after my 2nd Taxol tomorrow. Today is all about setting the house before infusion day.
I hope all the lovely ladies here are doing something interesting inspite of the weather.
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