Kiwi ladies who need encouragment, but all welcome.
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I am here! Really excited for tomorrow. I haven't found the humidity to unbearable, even though we have been racing through errands for the upcoming wedding. See you soon!
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Can't wait to meet you Kat.
Michelle, my GP calls me "her most resourceful patient". Not sure if that's a compliment or not ..........
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Fantastic catch up yesterday with a great group of ladies. We need to do it more often.
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Thanks for a lovely afternoon ladies, it was lovely to meet you all. The icing on the cake was the gorgeous Katcar being in Auckland and able to come along.
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Great to meet everyone and really good to find out more about you all. It was the perfect place to go. Kath I hope you enjoy your time in NZ. Nikki thanks again for the foobs, I will try them on when it gets cooler.
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Awesome looking group
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A happy looking bunch. Glad you had a good get-together.
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Recovering from the wedding today! It was a very hot but perfect day for the event. The catering was absolutely incredible, and I think it was smart that this was where the happy couple put most of their funds.
It meant so much to me to meet you fine, lovely ladies and learn more about you and your lives. Thanks so much for posting the photo--what a nice memory. I am looking forward to another meet-up! I hope I can see some or all of you before I head back to Mexico. We are headed down to the south island tomorrow bright and early. Looks like another fine day... I hope you are out enjoying it.
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Hi all, hope everyone is doing well. It was so nice to meet some of you on Saturday, shame we all couldn't be there. Kath I hope you enjoyed the wedding and are getting to see out beautiful South Island now. Looking forward to another catch up. Too bloody hot for me at the moment. Thank goodness for air conditioning. Take care everyone, talk soon, Donna xxx
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Hi everyone, just wanted to tell you all what I was told at the breast clinic today where I had my mammogram and ultrasound (both fine, thankfully). I had an hour long consultation with my BS who has a PhD in lobular and stomach cancer and knows a lot about genetics. She told me that there isn't any real point in me having genetic testing, which I was hoping to have soon. She explained the reasons to do with my family genetics etc. and I could see what she meant, although it's frustrating. I may still try Color Genomics (US website where you send a saliva sample). She wasn't in favour of this. She also said that she didn't advise me to have any more breast MRIs because the gadolinium (contrast dye) is now considered potentially dangerous as it may stay in brain tissue! I knew it could affect kidneys but I didn't know about the brain. There is quite a lot of info on the internet about it. I was on a six monthly surveillance with alternating MRIs and mammo/US but she suggested clinical exam instead.
The problem for those of us with lobular BC is that MRI is the best tool for seeing it, mammograms often miss it and ultrasounds are better but don't always pick it up. So what a conundrum. Just thought I would post this for anyone who is getting regular MRIs, not to scare you but just to let you know. Have any of your doctors talked about it?
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Hi ladies, hope you are all doing well. Michelle I always thought MRI's were the best option for me as mammogram and ultrasound didn't pick mine up. I've had three in the past three years and am disappointed to hear that they may not be good for me. It really is a conundrum isn't it? My doctors have never talked to me about this and I will ask. However under the public system it's really challenging getting MRI's. I think because they must be really expensive. Anyway take care everyone. Donna xxx
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Hi ladies. Sorry I haven't been on here for a while. Life has been its crazy self - will explain all soon!! I was so rapt to see your gorgeous photo of your get together. So happy you got to meet up and Katcar too. Fantastic. And Niki glad to hear all feeling better after op. Yay it's done!
Well I think I told you all about my D&C in October last year, because of the sudden random bleeding I had after 3.5 years of no periods etc they thought I was definitely in menopause. They removed a polyp in October and said it was benign etc but during January I had bleeding again and it just kept going and going and getting worse and then I had cramps etc. Turns out I had a miscarriage!!! No friggin idea that I could have been pregnant - I mean you can't get pregnant when you have been through menopause! So a bit of a shock. That all happened end of January. Mixed emotions...relief and sadness too! Freaky.
Otherwise the first month of married life has been great. Life is never boring huh!!
Summer in Wellington has been shitty. Today was good though. Hopefully Feb will be better.
Xx
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Wow, it never rains but it pours for you Kruise! Quite a shock to find out that you that you're not in menopause by way of a miscarriage and all the emotions that brings with it. Glad to hear that married life has been good
I'm just trucking along, trying to get into some exercise as we're doing a Biggest Loser comp at work. I'm back to playing touch and social netball and I bought a sports bra that's like an iron vest lol. I don't even need to slip a scrunched up hanky into the underside as it holds everything so firm. (When I wear a normal bra I can feel a much greater movement of the left boob movement if I jog or whatever). Getting quite a lot of shooting nerve pains at the moment so I guess things are still healing inside.
Off to the 60th birthday party today of one of my friends from Daffodil House - she wasn't going to have one because she's been through the wringer with bc but then she thought, nope, life needs celebrating. So it's a bring your own dish and bottle, very relaxed sort of affair. Our other comrade-in-arms from the house is making the journey from Central Otago too so it will be great to all be together again.
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Thanks Amusing. Yes it certainly was a bit of a shock.
It sounds like you are slowly getting your 'normal' back which is great. Hope the 60th goes well. Fabulous that your friend did decide to do something. Life is too short not too! Hope you had good weather for it.
The shooting pains are very common. I still get the odd ones too. I try not to worry about what it may or may not be as I actually got pains like that when I discovered my breast cancer.
Hope everyone is having a nice weekend.
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Kruise, hope you're feeling better now. What a shock that must have been! It's amazing what the human body is capable of. We were hoping there was some way you could have turned up to our get together but never mind, another time hopefully. Donna I agree, just when you think you're on an even keel with BC, something new crops up. I hated having MRIs but was prepared to have them if they were helpful. I sent off for the Color Genomics test the other day with the sense of 'I just want to know'. It looks legit to me from what I've read so I'm going for it, results will take a few weeks I think.
Amusing, I had those shooting pains for at least a year after lumpectomy. It's the nerves regenerating apparently. Quite painful I know. Nikki, hope you're recovering well from your last surgery.
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Hi everyone, hope your all well and enjoying life.
I'm just plodding on - been back to work a month now and am quite enjoying it. Good to mix with people who have nothing to do with cancer. The old brain gets a bit forgetful but it's not that bad.
Treatment continues with herceptin and femara. The herceptin is pretty easy but the femara has worsened the bone pain that I had following chemo. It's the getting up from a sitting position which is the killer. My family bought me a Fitbit for my birthday so I'm trying to keep up the steps.
I've a bone scan on Friday which I'm bricking as it is a repeat due to a grey area on my hip. Then I've a bone density scan two weeks later. So the calendar keeps filling up.
One good thing is I now have a new prosthetic boob so no more pushing my softie off my shoulder as it keptrising up.
My daughter and I have booked to have a tattoo done. Was supposed to get one for my 50th so am a few years out. Can't wait actually but hope it doesn't hurt...........
Have a great week, hope the sun shines brightly.
Helen
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Good to hear that things are going back to relative normality Helen. Fingers crossed for a good bone scan. Remember it could be a lot of other .benign stuff, rather than something nasty. I must admit I had a wee giggle at the thought of you with your 'boob' on your shoulder! Do you what sort of tattoo you're going to get?
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Sorry I've been a bit quiet this last week. Had some terrible news that Louise's job isn't going past the 90 days - they told her on day 86. It is apparently a commercial decision. She is naturally devastated as am I. She had no clue and apparently her boss didn't either - it was a directive from Australia. Doesn't help though, it's really screwed with her confidence. I have been trying to get her to see that its not the end of the world, but it's hard for her going in there everyday until 22nd Feb. Nothing more to say on that subject.
Completely over my surgery - best thing I have done I think. My joint aches are so much better and my mood is even, so I think I must have been having hormone spikes despite the zoladex.
Hope you guys are all good x
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That truly sucks Nikki
A couple of things to check re her Employment Agreement: Did she sign the Agreement prior to starting? And (and this is one that catches employers out) was there a notice period specified in the Agreement? If either of those things is a No, then the 90-clause is invalid. Glad to hear you are feeling good though!I got a letter on Wednesday from the DHB re my complaint about the MO. It says that due to the 'relevant staff being on leave' they won't be able to respond within the required 20 working days and will now be responding by 16 March i.e. another whole month. They're probably hoping I'll give up and go away.
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Nikki, sorry about your daughter's job. The 90 day clause only benefits employers not employees. My oldest son has been caught out by it before. Have you started letrozole yet? Amusing, what is your complaint about? I looked back through thread but couldn't see what you're referring to. I should receive my Color Genomics test kit soon. It will be interesting to see results.
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Optimist, this should take you to the post when I had my wee rant
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Hi guys, just signing in to say hi and hope you are all good. So sorry about your daughters job Nikki, gosh that makes me so mad. Same thing happened to me at her age and I still think about it 40 years later
I guess it's a lesson in life, that sometimes life just isn't fair. But we already know that don't we? Has she thought about going to Uni or doing a course maybe? Nothing exciting to talk about in my life. I went home on Valentines day and despite leaving heaps of buckets filled with cold water by my front door for all the flowers, that blimmin Florist must have got lost again hahaha! Good to see the rain up here, but my thoughts are with those poor people in Christchurch, some of them have only just had their homes repaired after the Earthquake and now they have lost them completely. Kruise I was sorry to hear that you haven't been too good. I hope you are recovering nicely and that lovely husband of yours is spoiling you. Good luck with your scan Helen Take care everyone. The traffic is going to be so bad in the rain tonight I'm meeting a girlfriend at the pub on the way home, rather sit in a pub than in the traffic for two hours. Bye for now, Donna xxx0 -
Hi Girls. Thanks for your sympathy. Donna, Louise has already done 2 years of travel & tourism, so we'll be still looking for jobs in that area. If she can't find anything reasonably quickly then temping might become an option. That will keep her busy and give her experience at least. She finishes on Wednesday. Sorry to moan, but I am sure you guys know how this affects a kid with anxiety, and in turn their Mother, who has to put the pieces back together. I am just so mad! .
Kruise, I am just so amazed how our bodies defy medicine. I hope you are feeling ok about it all. Truly bittersweet.
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Hi everyone, hope you're all doing well. Nikki how's Louise getting on with the job hunt? Are you feeling fully recovered after your surgery? Donna I loved your post about Valentines Day.
Amusing, good on you for complaining. I wish I had complained about some of the odd comments and negligent treatment I've had from doctors over the years.
Katcar, how's your trip going in NZ? It really was lovely to meet some of you recently. I sent my Color Genomics test off a week ago and have a couple of weeks to wait for results. It was a bit of a process to get it done but worth it I hope. Cost about $430.
Shazza how's your son getting on in the UK?
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Hi all,
Back on land after a cruise on the little sailboat around the sounds--just beautiful! I can see why Pete loves his home so much.
We are packing up to head back to Auckland. He flies out on Thursday but I will be around for a few days, leaving on Monday. Perhaps some of you can meet for drinks??? I will be staying at friends' house in Coxs Bay. Is there anything I should see in Auckland that you recommend?
I don't know if it was the period of cold, humid weather we had when I first got to the South Island, but the joints in my right hand really flared up. It got so bad that I had to get a hand brace as I could not grip things. Maybe it is Tamoxifen finally taking its toll?
Michelle--I am so interested to hear about your BCI results. Is that one done with blood or on the tissue itself? Thank you for the info on MRIs with contrast--I have had several of those this past year as well as CT scans with contrast. I will be discussing this with my doctor! I already told him no more CT scans unless absolutely necessary.
Kruise--Terribly sorry to hear about the miscarriage, and I hope that was not too emotionally upsetting for you nor took too much toll on you physically. And I do hope that you are enjoying marital bliss!
Nikki--The same thing happened to Pete's niece with her job in Wellington, and she has been interviewing for another position. I hope Louise is able to find another position quickly.
Helen--Did you and your daughter get tattoos? And how did they turn out?
Amusing--I cannot believe it takes that long to review a complaint! :-(
Shazza and Donna--What is new with you?
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Hi Kath, glad you're enjoying your trip, sorry to hear about your hand. Regarding my genetic test, it's with Color Genomics, a US company which analyses 30 different genes to look for mutations including in BRCA1 and 2. Here is a link: https://www.color.com They use saliva samples which makes it possible to do it yourself without involving your doctors etc. My results will come back via email in a couple of weeks.
The info on MRIs is that gadolinium (the contrast dye) can potentially stay in brain tissue (very scary). It can also adversely affect the kidneys. I think with CT scans it's just a glucose solution used, so should be fine. There's always something new to worry about.
I'm probably not able to meet up as I've come down with a virus. I would recommend going for walks in our parks - Western Springs Park and Cornwall Park, both beautiful. You've already seen the Domain. Ponsonby Rd is interesting and the Viaduct Harbour. Also the waterfront - Mission Bay is lovely for a swim and lots of cafes. You could do a bush walk in the Waitakeres.
Hope everyone else is doing well.
Bye, Michelle
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I am sorry to hear that you have a virus, Michelle! Get well soon. I get confused between the Color test and the BCI one. It certainly is reasonably priced and gives a lot of info! The MRI info is certainly concerning... it seems that everything we do has a side effect... nasty stuff hanging out in the brain is definitely not okay. Thank you so much for all the recommendations. I am looking forward to walking and stretching my legs after so much time in cars and boats.
Take care!
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Sorry I missed catching up with you Kathleen! I so hope that you have enjoyed your time in NZ, and will be back at some stage - I really did enjoy meeting up with you and everyone else.
I have been so busy with work - who the hell works 45 hours a week????? I don't know how I used to do it.
Louise is interviewing for jobs - so hopefully finds something suitable soon - she's made the shortlist for 3. I will let you know how she goes.
Still spitting stitches from my chest and now the laparoscopic incisions - feeling a lot better through now that I am not having the zoladex injections. My joint aches are half of what they were. Gotta be progress! Kath I fully recommend getting your ovaries out - I am really so much better now. I think I underestimated what those injections where doing to me. I don't feel like I have hormonal peaks and troughs, I am every even now.
I hope you all are well and enjoying the slightly (very slightly) cooler weather. Yay yay for autumn! Michelle, I hope you are on the mend. Hey Shazza, Kruise, Helen, Amusing, Donna and anyone else who is around.
Lots of love xxxx
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Hi everyone, good to see your post Nikki. Great for you to be off zoladex. Are you going to change to letrozole?
I got my Color Genomics results by email today, NO gene mutations at all. I was trembling and my heart beating fast before I opened the email. I was expecting there would be something. So it's good news for my boys and my mum and sister. I will let my doctors know, it's just good to have the information. It also tests for gene mutations for other types of cancer. It was fairly easy to do and not nearly as expensive as the $2500 test offered by a Melbourne hospital (which tests fewer genes).
I'm also enjoying a cooler day today, hope it lasts. Our summers seem to go on for half the year.
Bye, Michelle
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Hi everyone hope your all good. My lovely daughter and I got our tattoos last week. Very happy with result. Right lower leg above ankle. Already considering #2 lol.
Markings all of my own choosing sure beats a surgeons scalpel.
Not much going on - waiting for 2 scan results which I hope to get at next weeks appt.
Back to work - doing not too bad. Had a huge loss of confidence as I made a big mistake 2nd week in and thought everyone would be wondering what the chemicals had done to my brain. But things are looking up I just need to concentrate more and of course be less paranoid.
Hair good - heaps of compliments. Nails just so gross. Lympedema encroaching on my chest area. Man life is tricky.
Take care
Helen
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