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Kiwi ladies who need encouragment, but all welcome.

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  • fizzdon52
    fizzdon52 Member Posts: 382

    I think it's just one of those days today, at least here in Auckland anyway, overcast and the sort of day it would be lovely to spend curled up with a good book. I've been feeling a bit out of sorts as well, think I'm just really tired and worrying makes you tired as well. I had a bone scan yesterday at Middlemore, just to see if I have Osteoporosis because I am on Femara. I spoke to a Breast Oncology Nurse at Auckland Hospital, I've never met her but gosh she was nice. When I told her about my blood test results she faxed me another form for another blood test because she didn't believe the results. The second blood test had exactly the same results. Apparently the Zoladex is working because even though the tests said I'm not in menopause, one particular hormone suggests I am. She said it's unusual but she ran it by two Doctors and they both said the same. However she has booked an appointment for me with the Oncologists so we can talk it over. They probably think I'm over reacting but if there is one thing I have learned with this journey and my sons journey, you really to have to take your health into your own hands sometimes. I didn't see the blood moon last night because it was really cloudy. Did any of you because the pictures I have seen online are beautiful? Have a nice day everyone :)

  • Angstapp
    Angstapp Member Posts: 81

    Great news ladies - love hearing shrinking and stable!!

    xox

  • nik1966
    nik1966 Member Posts: 402

    Fizzdon.  I hope that you're feeling a bit better today.  If you don't mind me asking, how long did it take to get your Bone Scan appointment.  I am still waiting, although I have my CT date.  I am really worried about the results of the scans and have this rising terror that I am having to swallow.

    Does anyone know the affect of chemo on teeth?  For the last year and a bit I have been wearing braces and want to keep going with the treatment (feels like a first world problem now .....)

    I am encouraged by all of you ladies and thank goodness for you and this website! 

  • fizzdon52
    fizzdon52 Member Posts: 382

    Hi Kiwi1966 after my initial diagnoses I think it only took 1 week for an MRI at Ascot to see if it was in both breasts. Then another 1 week for a full CT scan. But the scan I had yesterday was just to see if I was getting Osteoporosis due to the drugs I am on (Femara) which can cause Osteoporosis, it wasn't a CT scan. My CT scan to see if I had cancer anywhere else was pretty quick because they had a cancellation at Middlemore, so I got called in the morning and had the scan in the afternoon. Also, I thought a CT scan would show cancer anywhere else, including bones, although I'm no expert. Perhaps someone else on here might know. I know about that rising terror feeling, you are at the worst part right now and we all know just how you are feeling. It will get better, although my fear is still pretty overpowering sometimes. Thinking of you and if I can be of help, please just let me know.

  • nik1966
    nik1966 Member Posts: 402

    I just got a call from Radiation Oncology with an appointment for Monday at 9.20am.  I am seeing Christine Elder.  I have no idea what questions to ask.  Can anyone help me with this?  Sorry to sound so stupid but I am all over the place :-(

  • shazzakelly
    shazzakelly Member Posts: 620

    I've had numerous scans but never a bone scan. My bone mets showed up on a PET-CT scan, an ordinary CT scan and a MRI, I have a CT scan every 3 months because of my Stage 4 status and that does show up all my mets, bone lung, nodes, etc. 

    sorry I can't help with the chemo teeth question but I know which some of the drugs they give to strengthen bones can cause dental problems. 

    Finally a nice day so of course Im rostered on a long shift at work. Better run. Hope everyone has a great day. 

  • fizzdon52
    fizzdon52 Member Posts: 382

    Hi again Kiwi1966 The Radiation Oncology people are really lovely and very helpful, at least the Radiation Oncologist I had was (Susan Brooks). This is to discuss the Radiation treatment they will be giving you at Auckland Hospital. Once your scars are healed they will be looking at giving you Radiation treatment. See if they can use the Mepitel film on you, it's fantastic stuff and you won't get any side effects from the Radiation treatment. I found the worst thing about radiation apartment from the tiredness was getting a blimmen car park at Auckland Hospital. They will tell you how many treatments you will need, they will be from Monday to Friday and can go from 3-6 weeks (I think). Mine were for 3 weeks and I had 1 week of boosts because there was a question about my margins. You won't need to worry about boosts if you had a mastectomy. So maybe just ask if you can get Mepitel film, how many treatments you will need. They will be very informative to but take someone with you because it's hard to take it all in. Please remember I'm not an expert, and I'm just telling you about my experiences. Your treatment may be very different to mine. Radiation Oncologists should be able to answer any questions.

  • kt1966
    kt1966 Member Posts: 1,021

    Hi all,

    Kiwi1966, chemo didn't affect my teeth- I had AC, I guess it depends which chemo you have tho. The bisphosphonates (bone building infusion drugs- I'm getting soon) can cause ONJ, which is when the jaw or part of it dies, but I think its quite rare.

    You're more likely to get mouth ulcers with chemo, but there are mouthwashes you can use.

    Its a while since I had radiation- I had 5 weeks, even tho I had a mastectomy because there were close margins. My skin coped ok. My lungs & 1st rib show radiation damage tho ;) The actual process of getting radiation after the first measuring up/tattooing appt is really fast, only takes 10 min to do- more time parking, walking & changing. 

    I've had 2 bone scans, one 11 years ago & one 3 years ago. Only a bone island showed up on the last one- but I wonder if it was the beginning of bone mets- which showed up in my PET/CT scan 3 months ago.

    I hope your appointments go well. It is intimidating, all this stuff at first, but you'll get used to it ;)

    Well, I'm done for work for the day- going out for lunch with the girls soon, then its the weekend, yay!

    kt

  • kt1966
    kt1966 Member Posts: 1,021

    Hey, nice weather at last!

    Enjoy it everyone :)

    Just spent the morning worming the sheep & goats. A work colleague of DH came up to collect our 3 guinea fowl to take to her place & one managed to escape so we'll have to catch him later & take him down separately so he doesn't miss his buddies too much!

    I'm knackered now- my energy levels aren't what I'd like them to be, time to relax & read the paper- if my eyes can handle it, they're tired too.

    kt

  • Kruise
    Kruise Member Posts: 242

    hi ladies

    Lots has been happening since I last logged on! Am back home now after school holiday travels and taking my girls up to drop them off at Miley Cyrus concert in Auckland. I managed to have a quick cup of coffee and a muffin at the Mount Maunganui shops yesterday before driving back home and the ladies in pink were set up on the footpath with all their Breast cancer bits and pieces. I handed them $5 and received a pink ribbon but didn't say anything ;) 

    Welcome Kiwi1966 - so sorry that you have to be here too but you have certainly found the right place to be amongst your kiwi BC sisters. We all know how hard it is for you right now especially the uncertainty and wondering. I agree with what kt said above though that it is better to at least have all the scans and all the info and facts. Then you go from there and deal with whatever you need to deal with and guess what?? You can and you will!! It's like that saying 'You never know how strong you are until being strong is the only choice you have. 

    Try to have a nice weekend and do something that you enjoy or makes you feel good.

    Just keep talking with your hubby too - it is hard for all of you - but communication does help. It may even bring you closer together which is a good thing. Our men folk do seem to suffer in silence a lot - I think its a kiwi bloke thing! Or they think we are worrying enough on our own that adding their worrying only adds to it. :)

    Good to see you popping in Ange and JoTro :-) Jo your holiday up Northland sounds fab. I loved it up there too even though it was just after I had found my bc lump and had been told the biopsy had come back positive. 

    KT, Shazza and Fizzdon hope you are all feeling a bit better now and catching up on some rest. I'm planning on a nice relaxing day today but have a 50th to go to tonight also Shazza - my cousins. Then working for St John at the last WOW show tomorrow afternoon. The weekend will fly by. 

    Xx

  • kt1966
    kt1966 Member Posts: 1,021

    Hi again,

    Did you all see the story about the lady with metastatic BC in the Heralds Canvas mag?

    Interesting read, I don't know how much going totally organic/vegetarian would help now?

    I'm not overweight, breastfed kids, wasn't on the pill for long etc etc, my diets pretty healthy- lots of veg etc....I think its luck of the draw a lot & genetics?

    She's been stage IV since 2002, so I guess she's doing something right.

    Anyway- hope you're all enjoying the sun :)

    kt

    (I think she's on TDM-1 now  which is for Her2 + cancer)

  • nik1966
    nik1966 Member Posts: 402

    What a beautiful day it is out there today!

    kt1966, I heard about the Herald article on the radio, I might just go and grab a copy.  I need inspiration in spades right now.

    Kruise, thank you for your encouragement.  I love that quote.  My husband is being very supportive, and I thank goodness for him.  It's a surreal time in my house, but my teenagers are keeping me grounded.  My daughter also went to Miley on Wednesday.  She had a great time but was quite shocked at some of the antics of the audience.  She's a bit of a prude like me, but is mature enough now to see silliness for what it is.

    My son is flying today and tomorrow on an ATC camp at Whenupai.  He gets to fly with an instructor and take the controls for 30mins a couple of times.  I am so jealous!  He is an NCO at the Papakura Cadet Unit (we go from Howick out there each Wednesday and have done for 3 years).  I was very active out there, but decided to step back in light of my BC.  I felt that I needed to de-clutter my mind a bit.

    It is so good for me to log on here and see your messages, and know that I am not the only one out there.

    Thank you

    Nikki

  • midnight1327
    midnight1327 Member Posts: 1,331

    Kruise, you look a very cool chick in that photo, love it, with your shades.   and Kiwi, you remind me of a girl i used to work with in Whangarei, when i was there,  we  worked in  a day care centre ward at whangarei Hospital for the elderly, i was the cleaner, that  was in 1995 and1996, just the look and the glasses, you could be her twin sister.  thats how close in looks you are.

  • nik1966
    nik1966 Member Posts: 402

    I have just come home from my Radiotherapy consultation.  I am still on the waiting list for a Chemo consultation and team assignment.  I feel sick.  Christine Elder was lovely but I still came home a cot-case.  While I have my CT scan appointment next week, the bone scan is not until the 12 November.  Too long to wait for me. Christine said that they might be able to see enough from the CT to at least get an appointment with the Chemo team.  I am trying not to go to the dark side, but I can't help it.  Any suggestions on how I can get through this with my sanity intact??

  • nik1966
    nik1966 Member Posts: 402

    Thanks Fizzdon for the tip about the Mepitel film.  They will use it when I have the radiation :-)

  • fizzdon52
    fizzdon52 Member Posts: 382

    Aw Kiwi I'm sorry you're going through such a hard time at the moment, I know how you feel. There is nothing I can really say that will help other than you will get through this, you will come out the other side. Also remember we are all here to talk to and help you through it if we can. I think having to wait until the 12th November is cruel. Can you get on the phone and try and hurry them up? Ask them for a cancellation call??? Maybe some of the other ladies on here that had Chemo have some suggestions for you. Have you been to see your Doctor, mine was lovely when I was in a very dark place. I even had to go on antidepressants which I am now slowly coming off? I'm here if you need to talk xx by the way my name is Donna, sounds a bit better than Fizzdon. I'm having a bad day today too, I think it's just normal to feel like this sometimes, especially this early in the piece :(

  • nik1966
    nik1966 Member Posts: 402

    Hi Donna.  Thanks for your reply :-)  I have called my doctor about getting something to help, she's going to call me back.  I've called the Breast Nurse at the Clinic and asked to her put me on the cancellation list for the bone scan, which she's done but apparently they are quite busy at the moment.  I have to ring the nurse back if I haven't heard from Medical Oncology by Friday.  Also been in touch with the Cancer Society to get some support.  Trying to drag myself back from the dark side but it's tough.

    All of you ladies are great, and I can't thank you enough for your support.

  • kt1966
    kt1966 Member Posts: 1,021

    Hi Kiwi1966,

    Waiting is the worst! Whether its for scans or results, there's no easy way to make things hurry up! The only thing you can do is try & keep busy & not think about it too much.

    Distraction is the answer  :) 

    The good thing is CT scans can see a lot. Although I've had bone scans previously, they could see my bone mets on my last CT.

    Hope time flies for you :)

    kt

  • nik1966
    nik1966 Member Posts: 402

    Thanks for your reply KT. The cancer society nurse is coming on Wednesday morning. That will be good, she was reassuring and I feel a bit calmer.  I work at home, and my mind races.  I need some coping mechanisms in place I think.  Kids home from school now so that'll work, I think I'll start nagging about homework!

  • kt1966
    kt1966 Member Posts: 1,021

    It will be good to talk to the nurse :)

    She'll be able to give you info etc & its just nice to talk to someone who deals with this all the time.

    What a beautiful day...I love this weather, sunny but not too hot yet.

    My dad has arrived to work on the house, getting ready to paint- which a lot of the family will help with... I was making a cake, but my DD has just txtd me that tech has finished early & she wants picking up- an hours drive there & back, so the cake will have to wait.

    Hope you have a good day without worry! Get busy :)

    kt

  • Kruise
    Kruise Member Posts: 242

    hi Nikki (kiwi) - sorry I'm a bit erratic at going on here but just read about your latest developments. At least you are being proactive at getting the help you need. It is out there - and the Cancer Society are great so good that the nurse is coming to see you. 

    Kt is right with the distraction thing and Donna is also right with using meds if you need to as well. I found taking control of the things I could do to help myself was good too. I went to see a naturopath to make sure I was giving my body the right herbs, vitamins and minerals it needed to fight, I also tried acupuncture, meditations, etc etc. I pampered myself, had a facial, did my nails, got my hair done (while I still had some lol) in fact there is nothing like putting on some of your favourite music and moving to it, or some relaxing music and taking deep breaths. 

    Things that aren't good to do:- Researching everything on the Internet about the doom and gloom of having bc. It's irrelevant and unhelpful. Spend that time watching a funny movie with your hubby instead.

    Comfort eating 😄 lol (been there done that)

    Wallowing!

    Concentrate on living in the moment only - focus on what is happening right now - whether it's your children talking to you, the cat meowing for food, the flower out the window blowing in the breeze - they bring you back to the moment and that's what's important. That's what counts. Focus on your blessings and they will far outweigh the negatives.

    The future is unknown for all of us as we don't know what will happen to us or what's in store. We've lived all our lives up to this moment like this so nothing has changed so let's forget about worrying about the future now. Bad things have happened but we've grown through them and learned from it - and the past is history - we can't change it. 

    We can do the best we can to make this moment count though.

    I'm sending you all the best possible thoughts and healing and keep talking if you need too. Vent, scream, let it out!! Then take a deep breath and keep putting one foot in front of the other. 

    Big hugs to you all xoxox

    Karen

  • nik1966
    nik1966 Member Posts: 402

    Thanks for the ideas Karen.  Today hasn't been such a bad day ........ well not as bad as yesterday.  I think that the Radiation Oncologist just threw me.  The Breast Nurse and the Cancer Society both said that she is very good but can be quite direct and clinical.  Perhaps I need to harden up :-)

  • kt1966
    kt1966 Member Posts: 1,021

    Hope your time with the cancer society nurse goes well Kiwi  :)

    thinking of you.

    Have a great day all! Its looking a bit grey up here, but not raining :) might get some painting done

    kt

  • fizzdon52
    fizzdon52 Member Posts: 382

    Good luck today Kiwi1966, I hope she answers some of your questions and you feel better after her visit. Will be thinking of you :)

  • Kruise
    Kruise Member Posts: 242

    did you get some painting done kt?

    Was a stunning day today here - I even took the dog out for a walk and then my DD got home from school and she said to the dog 'you wanna go for a walkies?'. I didn't tell Her he'd already been as I figured two walks in one day can only be good for him! Lol

    Hope it went well today Nikki.X

  • nik1966
    nik1966 Member Posts: 402

    Thanks for your support.  I had a good day today. The cancer society nurse came over (I asked my friend to be there also to catch the stuff I might miss).  She was really good and I feel like someone has got my back.  Emailed the kids teachers to keep them on track as they start their exams in a few weeks.  Got an appointment for the Doctor tomorrow and managed 7 hours work.  Hopefully soon I can start focusing on the treatment, having dealt with my worries in a more productive way than losing the plot!

    To top it off it was a beautiful day today.  Hope you all managed to enjoy the sunshine :-)

  • kt1966
    kt1966 Member Posts: 1,021

    Yay, Kiwi- I'm so glad you're feeling better about everything. It's so good to be proactive & not let the worry get to you. 

    Good idea to have your friend there too :)

    It turned out to be a lovely day. With the help of my parents the 3 of us did the first coat of paint on the carport area- lots more house to go but it felt good to get it started. 

    I'm very tired now (& grumpy DH says)

    A good nights sleep will help. 

    Have a good night 

    kt

  • nik1966
    nik1966 Member Posts: 402

    Hi All,

    Oncology just rang and I have a appointment at 3.30pm tomorrow.  The bone scan appointment has been brought forward to this coming Tuesday (day after the CT).  Anyone have any experience with Rosalie Fisher?

    At least things are happening now.  Got some anti anxiety pills so hopefully everything will calm down soon :-)

  • fizzdon52
    fizzdon52 Member Posts: 382

    Hi Kiwi, that's good, I think it really helps if things are moving along fast and once you know what is going on your anxiety levels will drop a bit, probably won't go away completely but it does get easier. I've never heard of Rosalie Fisher sorry but someone on here may know of her. Don't forget to take someone with you to take notes, write down any questions you may have beforehand and tick them off once you have asked them. That's what I did anyway and really helped me. Best of luck to you x

  • shazzakelly
    shazzakelly Member Posts: 620

    Rosalie Fisher is featured in the latest Mindfood magazines Breast Cancer special. get a copy from your local supermarket. She's young and gorgeous.  She is mostly involved in research but works 2 clinical days a week at Auckland hospital. I have met her. (I met pretty well every oncologist at that hospital when I had my only 5 other people in the world chemo reaction) she seemed really nice. A friend of mine who works in oncology says she's great. 

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