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Kiwi ladies who need encouragment, but all welcome.

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Comments

  • Optimist52
    Optimist52 Member Posts: 144

    kt I'm so sorry that you're feeling unwell. I personally find headache to be the worst pain of all (I have chronic migraines). I've missed you on this thread and in fact it's been pretty quiet for a while. I really hope you get good answers from your onc appt.

    Hope everyone else doing well.

  • HelenWNZ
    HelenWNZ Member Posts: 404

    Hi Kt1966 sorry your feeling so crap hope they listen to you and bring appointments forward. Shame we are in the middle of winter.

    Chemo for me is in Invercargill - we did think we would have to go for the first visit but a doc came down to us.

    Radiotherapy is in Dunedin so that will involve a few weeks there which will be take a bit of sorting out. But I am compiling a list of people who can have turns for the weeks so my other half doesn't lose all his leave.

    Trousers all stitched up all is good in the world - no bits dangling.

    Take care Helen

  • nik1966
    nik1966 Member Posts: 402

    Gosh you've been feeling lousy for a while KT. I hope you get your appointments moved forward, and get that CT done. It's frustrating and nerve racking to have to wait. In the meantime I hope that you're taking it easy. What's the progress with the house?

    Helen, I am not going to say that chemo was a breeze but it wasn't nearly as bad as I feared. I only took the steriods during the infusion and for a few days afterwards, not before. The only side effects I had from the steroids was a huge appetite and trouble sleeping. The effects of the FEC were doable and kind of like having a hangover for a few days, the taxotere gave me the sore muscles and bones, but my mind was clearer. We are all different in our reactions though, so here's hoping it's alrightish. Glad you don't have to travel to Dunedin for the infusions, one less thing to organise is good. You can get 3 free counselling sessions from the NZBCF. The form is available on their website. You just get your doctor to sign and fax it off. You then get an email with a number with which to book your sessions with. My friend works for the co-ordination place, and she can't speak highly enough of the counselling provided, and it's nationwide.

    As I am still waiting for a Gynae appointment date, I spoke to sensible Karen Spells and had a blood test yesterday to check my hormone levels as I have had something resembling a very light period twice in the last month. I have broken out in a few pimply spots as well. I am waiting for her to ring with the results either today or tomorrow (she's off to San Fran on holiday next week. All this has convinced me that the sooner they take out my ovaries the better. Injection time again on Friday - yuk! 28 days seems to roll around really quickly these days.

    We went down to New Plymouth for the weekend. It was a nice break away even just for a few days. It made me realise what a blimming rat race Auckland is.

    Hi to everyone. Happy Wednesday

  • nik1966
    nik1966 Member Posts: 402

    I hope it all goes well for you tomorrow Helen. I will be thinking of you

  • kt1966
    kt1966 Member Posts: 1,021

    Thinking of you today, Helen.

    I hope everyone has a good day too.

    (I'm out for lunch with friends later- good to have a distraction)

  • HelenWNZ
    HelenWNZ Member Posts: 404

    Hi everyone - only yesterday I said two steps forward and one step back well in blimmen happened again today.

    After no sleep at all last night because of the steroid meds we are at the hospital in plenty of time. No hurry here obviously... Blood pressure 121/76 all cool here.

    Line in - port all checked and ready to go until nurse says I will just go and get your chemo drugs from pharmacy only to find they are in our Dunedin hospital (as we a regional hospital) and they wont be here until tomorrow. Talk about frustrating - had a good cry as I do and said this is bullshit.

    Asked for sedation as now I'm on these steroids for a few more days and I get grumpy if I don't sleep. No blood pressure taken on way out would have blown the machine I expect. Human error as well as they are rushing me through as somewhere along the line I have been missed so a catch up happening.

    So here I am needle in place in my port, still to save time tomorrow. Went for a walk which was to clear the head but did struggle being fatigued but eyes wide open.

    Back we go tomorrow. Poor partner has to take an extra day off work.

    Thanks for your best wishes I will be holding on to them for tomorrow.

    Sorry for my rant - have a great day

    Nik - I did accepting a counselling referral this time through the hospital plus I have the NZBCF and Pinc have given me ones as well. Never been before so the poor counsellor might be in for a shock.

    Helen

  • kt1966
    kt1966 Member Posts: 1,021

    Aw, Helen. That's not fair :(

    As if it's not hard enough when things go according to plan. I hope you get a good sleep tonight. I find half a zopiclone tablet on the days I have steroids is enough to send me off to sleep.

    I hope tomorrow goes smoothly!


    I had a ph call from Karen the onc nurse while I was at lunch. I should get a ph call from NSH re a CT next week. Phew, cos I lost my brekkie again today & my head is still sore (thank goodness panadol takes the edge off!)


    Take care all

  • HelenWNZ
    HelenWNZ Member Posts: 404

    Thanks KT1966 I will be popping a pill tonight for sure.

    The waiting is a pain - hope your wait is nearly over at least they are calling you.

    Take care


  • kt1966
    kt1966 Member Posts: 1,021

    OMG I just had a call from acute oncology and I have to be there at Ak hospital at 8:30am tomorrow. Jo says I could be in for a long day!

  • HelenWNZ
    HelenWNZ Member Posts: 404

    Awesome I was just going to sign out for the day - they truly are calling you..

    Smile

  • nik1966
    nik1966 Member Posts: 402

    Wow super fast KT, and not enough time to get your head around having an appointment. I hate things being sprung on me. But it shows that they can move fast when needed. I hope that tomorrow goes well for you and that you get some answers. I will be thinking of you xoxox

    Helen ....... buggeration!!!! After this it will go more smoothly I am sure of it. They will know your name (which is always good) so hang in there. Re the counselling - I am too scared to go because of all my baggage, not all of it BC related either (lol).

    Karen Spells has been a busy lady today. I have had this email from her regarding my hormone blood test "As always with you the result isn't clear cut so I don't really understand it and have asked Rita to explain the result to me. It's not unusual for hormone levels to be complicated!!". O....K..... (as my 17 year old boy would say) what does that mean?


  • Optimist52
    Optimist52 Member Posts: 144

    KT glad you've got an appointment, at least there isn't time to stress out beforehand too much! Hope it goes well for you. Nikki I've had odd hormonal test results too, last year to check that I could take an AI, even though I hadn't had a period in three years and was 52 my oestrogen result came back as premenopausal. I had another test and it was postmenopausal as it should have been.

    Helen how frustrating to gear yourself up mentally and physically and then have that happen. Best wishes for tomorrow.

    Michelle


  • nik1966
    nik1966 Member Posts: 402

    email from Karen says that the zoladex isn't suppressing my ovaries. Joy, injection due tomorrow

  • shazzakelly
    shazzakelly Member Posts: 620

    Oh my KT just caught up with everything good luck for tomorrow. At least they listened and got the ball rolling. Yay for Karen Spells.

    Helen what a bugger hardly the start you want for your first chemo.

    Niki that's a bugger. What do you think is the next step?

    I'm still trucking along. Was part of a photo shoot for a metavivors brochure today. Also my daughter found out that she has a place in the paramedics degree at AUT next semester so we are all pretty excited in our house.

    Hope everyone has a great weekend. I'm off to Christchurch to visit friends


  • kt1966
    kt1966 Member Posts: 1,021

    Hi all.

    Helen I hope chemo went well today & that you're feeling ok. Rest up & take the anti-nausea stuff on schedule :)

    Bummer about the zoladex Nikki. What's next?

    Shazza, cool about your daughter & the photoshoot too :) enjoy Christchurch!

    So, I've had my scan & I'm still at acute oncology waiting for a bed in the ward :( Unfortunately I now have brain mets. Bugger! Still trying to process this.....

  • HelenWNZ
    HelenWNZ Member Posts: 404

    Hi everyone from the sunny south

    Kt1966 - I'm new to this and don't want to say the wrong thing or be insensitive. I'm thinking of you and hoping for the best for you. Shit shit shit.....

    Here I am my first day. Went Ok I am pretty hyped up on the steroids - went to the supermarket and now home. Had reasonable night last night took some meds to help sleep which appeared to work although I did hear a lot going on in the night - in fact I was the only one who heard the phone go at 2.15am. My father in law had taken a fall so my partner had to race to his house and pick him up off the floor. Not a good start to the day.

    Had a chat to the counsellor - not sure if I am ready for an in depth session but well see how things progress.

    Had a boost yesterday which was a bit strange and talk about timing - had an email from another accounting firm in town asking me to give them a call regarding a vacancy they have. Here I am with cancer and now is the time for me to be wanted. My current work place have been too good to me to even consider it so I forwarded the email to my boss who replied pleeeeeeese talk to us before you do anything.

    Take care everyone Helen

  • Optimist52
    Optimist52 Member Posts: 144

    I'm sorry about this KT. I'm so impressed that you ask about others before you give your news. You always show so much empathy and caring to others on this thread and I'm sure in all aspects of your life. I can only hope that your doctors can get on to this and help you with the symptoms etc. Thinking of you.

    Helen, your job offer is indeed strange timing. You must be very good at your job. Best wishes for your treatment.

  • nik1966
    nik1966 Member Posts: 402

    I don't know what to say KT, other than I wish for all the world that you'd had better news today. You are in my thoughts. I hope you get some rest in there and some time to get to grips with it all. xoxo

    Helen. Glad the first one is over. As it gets harder it also gets easier as you know what to expect and how to deal with it.

    Good news about your daughter Shazza. I hope you have a great time in Christchurch.

    Not sure what the next step is in the hormone treatment, apart from having my ovaries removed. My cancer was 98% ER & PR +, so a no brainer really. Anyway the blood test showed that if I was in menopause then I would have 0-40 pmol/l of oestradiol. Unfortunately I have 77, so those puppies have a life force all their own. I kept begging the Oncologist to check my hormone levels but they always insisted that the injection worked. Anyway onward and upward I suppose. Just makes you wonder sometimes though.



  • shazzakelly
    shazzakelly Member Posts: 620

    Bugger KT not the news you wanted to hear. Hope they can get a new treatment plan up and going.

  • kt1966
    kt1966 Member Posts: 1,021

    Thanks for your kind words girls. Saw Rita today. She said I may be able to go home tomorrow (not sure if I want to because DH has the flu!) since I need a weeks worth of steroids before I start radiation.

    Apparently I have leptomeningeal mets (to the lining of the brain- figures since I have the same thing on my left lung lining).

    Funny how we are all so different & have different paths with same disease & similar treatments.

    I hope I'm not scaring anyone posting here. Chances are this will never ever happen to you. If you prefer I can not post about this.


    Anyway. Hope you all have a good weekend. Well done on your first chemo treatment Helen.

    Take care all

    kt

    PS edited to say I read somewhere only 1-2% of BC metsers get leptomeningeal mets.

  • nik1966
    nik1966 Member Posts: 402

    KT thanks for checking in - you have been in my thoughts today. I am sorry about your diagnosis. Advice: if you can stay away from the flu if you can, I have had it and this years dose sucks! You don't need it now. Btw you are special and you're not frightening me (and only you would think of us during the time when you should be 100 % focused on yourself).

    I hope you have a good night's sleep X

  • HelenWNZ
    HelenWNZ Member Posts: 404

    Hi everyone

    Just thought I would pop in and tell you all I have survived day one after chemo and day two is ticking along quiet nicely.

    I just wonder though if it is due to me being on the steroids for longer because of my mix up at the hospital and now having two days to wean off that I haven't hit any major bumps in the road to speak of.

    Yesterday I woke up feeling a bit dizzy but after food felt fine as I have not lost my appetite. I did have a flushed face and also around my arms and shoulders and chest but as I had no temperature I felt everything was probably part of the process. After a drink of water yesterday I felt a little sick so I quickly took a anti nauseous med and felt fine didn't need any more for the rest of the day. I did get a bit achy and puffy in the hands and had a very lazy afternoon.

    So that's it, not much to report. I have got a bit zealous with the hand washing and flushing the loo lid down twice and all that but I guess it is what it is.

    Had a bit of a pot luck tea around home as all my family are heading away on a family reunion to Australia that was my idea and I organised and am not going to which so sucks........I said to my family we are having the easiest meal ever wraps - chucked everything in the middle of the table and make your own it was a success.

    Had a sleeping tablet before I went to bed - took a whole one this time as half only got me to 2am the night before and a full one got me sleeping until 6.30am. Its my last one now until next round of steroids though. As my port went in when I had my op 31 May I'm all settled in that area and I am just so happy to be able to sleep on any side I like now which has made night times easier. I just hated sleeping on my back.

    Today I feel pretty much the same - we had a frost this morning and the sun is out so I went for a 15 min walk to clear the air.

    One wee thing that might be coming on is the inside of my mouth is a bit sore so I am being very mindful of mouth washing too. My daughter has painted my nails a dark colour as we read somewhere about it.

    Oh yes drank so much yesterday - tried to get to 3 litres but just couldn't 2750. I'm measuring!

    Take Care Helen

  • shazzakelly
    shazzakelly Member Posts: 620

    KT thinking of you today. Did you get to go home?


  • kt1966
    kt1966 Member Posts: 1,021

    Hi Shazza. I'm still in hospital.

    I had an MRI & radiation therapy planning CT yesterday. Hoping to go home this afternoon & back next week as outpatient for 10 rad treatments.

    Waiting to get MRI results... But saw Sheridan a little while ago. Hard news to break for her, apparently I'm prob looking at end stage disease :( But where there's life there's hope...(Sorry to be a downer)


    Hope you all are having a good week.

    What a shame you're missing your Aus trip Helen. You did well having a dinner after chemo :)

    Take care

  • Optimist52
    Optimist52 Member Posts: 144

    KT I was also wondering if you went home. Please feel free to share anything with us. As you say, we all have so many variations in our diagnosis and treatment and side effects. My oncologist described breast cancer to me as lots of different diseases with the only thing in common being the location i.e. the breast!

    Nikki I hope you can get your hormone treatment sorted out soon. How frustrating to have asked for blood tests before and not got them.

    Helen wishing you the best for chemo.

  • shazzakelly
    shazzakelly Member Posts: 620

    KT we are all in this together and are all here for you. Vent away. Very hard news to get your head around. Hoping the radiation can buy you some good quality time with your family

  • nik1966
    nik1966 Member Posts: 402

    Nothing I can say except (to echo what everyone else has said) we're all here for you though thick and thin KT. I hope you get home today.


  • fizzdon52
    fizzdon52 Member Posts: 382

    Hi guys, sorry I have been absent. On holiday (at home) and don't get on to the computer much. Seems a bit trivial to talk about what I've been up to now. KT I really don't know what to say but am thinking of you :( Please do post on here as we do all care and it could be any one of us one day. I know that probably is not PC to say, but let's be honest, it could be. Everyone else I hope your treatment is going okay. Stay warm it looks like we are in for a bumpy ride weather wise. Take care everyone, Donna xxx

  • woodyhollow
    woodyhollow Member Posts: 103

    KT - kia kaha....thinking of youHeart

  • kt1966
    kt1966 Member Posts: 1,021

    Hi everyone. Thanks for all your thoughts & love :) Nice to hear from you all (& thanks to whoever nominated me to moderators ;) x )

    I'm adjusting to being home, will take a while to sort out a new routine & new normal after hospital. I don't have a great deal of energy, but the steroids, pain relief and other drugs are helping. I am managing to do bits and pieces, small amounts at a time :) The hardest part is accepting what is happening & that it's real.


    I hope you enjoyed your time off Donna! A few more days to go yet. New job next week? Exciting.

    Optimist, I have to say I quite enjoyed my MRI in a weird sort of way it was quite relaxing. Mind you, I was laying on my back not my stomach. I think they've updated the machine at Ak, it didn't seem so old & clunky.

    How was Christchurch, Shazza? Nice to have a change I bet.

    Nikki, the house is still progressing slowly, plans in at council. Would be nice if I get to live in it, they better not take too long!! Hope you get answers soon for your situation.

    Have a good night

    kt


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