Kiwi ladies who need encouragment, but all welcome.

Optimist52

Hi Nikki, great news about the job. My oldest son has found it pretty difficult to find any decent work, very competitive out there. Amusing good that it's all going well. I had to go to Melbourne for radiation in 2004 because there weren't enough radiologists or machines in Auckland or nearby at that time. There was no private radiation therapy available here either. Luckily that's improved.

Hope everyone else okay.

nik1966

Amusing. I was allergic to the glad wrap, so had to give up on that pretty well straight away Do you have a bolus? I had quite extensive radiation damage made worse by the bolus - would have been less damage if I had been able tolerate the film. How many rads are you having

shazzakelly

fantastic news Nikki

amusingsoprano

No bolus for me Nik. You would be only the second person they know of that's had any reaction to it as it was originally developed for premature babies. Was it Mepitel film that you had?

nik1966

Yes it was Mepitel. I can be allergic to the adhesive in some dressings. I came out in a terrible rash a couple of days after it was put on, and wasn't able to use it. I was gutted.

Kruise

hi ladies

Congrats Nikki on your daughter's job. So happy for you all. Hope your arm is much better now. Sounds like you had a bit of drama at the hospital recently.

Kt - I hope you are going ok this weekend with no funny side effects or symptoms. Thinking of you too. I think you are amazing, coping with it all. Making us laugh too. Yes cancer absolutely sucks. You always seem to look on the positive side though and I just hope you can stay well and symptom free for a long time yet.

Shazza good on you keeping up the walking and having another goal to aim for with the star walk coming up.

Amusingsoprano - good that your rads are going ok so far. I didn't have the film to protect but they were just trialling it on a few ladies then and it came in shortly thereafter. Fortunately I was ok. I used a cream called something like Mebocream which worked wonders.

Helen - hope that your spot on your hip turns out to be nothing. Try not to worry too much in the meantime.

Hi Michelle. Hope your boy finds a job soon too. It is so hard for our young people at times.

It started off sunny here today but a few showers passing through now. It's supposed to clear up after lunch though so hoping it does as still trying to do some work on our gardens.

I feel fine now after my op but still no results as yet. Hoping no news is good news.

Hi to everyone else...hope you are having a good weekend.

Karen xx

kt1966

Afternoon everyone It's nearly the weekend!

I hope you've all had a good week.

I hope radiation is going ok AmusingSoprano. Rest up when you can.

Kruise, did you get results back yet? I'd ring if you haven't, but most likely no news is good news.

How was the Mount, Optimist? Always nice to get away, especially with friends.

Have you got your appts for your ops yet Nikki?

I've been reading but not posting to much lately. Been very tired & my symptoms have been increasing not lessening. I thought it might be reducing the Dex or the chemo affecting me, but I just got the last 3 weeks tumour markers back & theyve increased by 400 points. I'm thinking that maybe the chemo is not working

I have an assessment on Monday, so hopefully will get some answers then.

Later this afternoon we are meeting the kitchen man at our house to do a walk through. Pre line inspection is next week, so it will be great to see some progress inside soon.

Optimist52

Hi kt, thanks for asking, I enjoyed my time (only 48 hours) at Mt Maunganui. So sorry about your tumour markers. From reading posts on this site and other info I realise that in NZ we are not getting access to the latest cancer drugs and it's totally unfair in a first world country that health isn't given more priority over some of the less important things that the government allocates taxes towards. I signed the petition about this but not too confident it will make a difference.

Anyway, hope everyone else is doing ok. By the way, I've joined the Lobular Breast Cancer page on Facebook created by John Smith. I recognise some names on there from this site, quite good discussions and info for those of us with ILC. It's a closed group, which means it's private and you just have to ask to be added.

amusingsoprano

Kt, I'm very sorry your tumour markers are up. If this particular chemo isn't working, I presume they will try you on something else?

I had a good week, slept poorly but not sure that is rads, probably the damn hot flushes. I did have a brief 'poor me' moment mid-week but gave myself a talking to and I'm good now.

Question for all: Do you have people trying to tell you about you can cure cancer with carrot juice/fasting/meditating etc etc? I just got my first FB message from someone linking me to an article on how some lady 'cured' her colon cancer with just carrot juice! Funnily enough she had her tumour removed first

nik1966

Michelle, I joined that ILC page a few months ago and have found it really informative. The number of members to the page has grown hugely since it started.

Amusing, I had lots of people who had ideas on how to "cure me", including one person who wanted me to go up north and have ground walnut paste spread over my chest while sitting in a hyperbaric chamber, and she really couldn't understand that why I wouldn't consider doing it.

Sorry about the tumour markers KT. That sucks. I hope you get some answers on Monday. Sounds like the house is trucking along.

I have my mastectomy revision excision next Friday at Middlemore. It's only day surgery apparently, however I will make sure that I have some things packed just in case I need to stay. I had my 6 monthly Oncology appointment with Rita on Tuesday. She was actually quite good. She wants the surgeon to check out some thickening up into my collarbone and under my arm. It's been sore to touch for about 6 months - could be the surgical clips (9) which they put in when I had my first mastectomy. We discussed it and then the next day I got my surgery date, by phone. So I don't know whether she did anything to speed it up or not. Anyway I'll take that. Still no date for my ovary removal, which Rita was surprised about. I really am not sure who decides what in a DHB.

I turned 50 on Thursday. Both my sisters flew up from Wellington overnight which was fabulous. I took them shopping then caught up with friends before having a family dinner. Quiet and low key - just the way I like it. A perfect day.

Hi to everyone else. I hope you all having lovely weekend. I will be working for most of it, which is the price when you take two days off during the week.

fizzdon52

Hi everyone, welcome AmusingSoprano. I'm sorry I haven't been on here in so long, I do think about you all but still don't feel comfortable going on this site at work in my lunch hour. Don't know why because I have told all the men I work with that I have had breast cancer. Anyway it sounds like you are all doing okay. KT I hope you don't get anymore weird symptoms and Nikki what the heck, bloody hot water bottles I hope you threw it away and got a heaty weaty bag or whatever they are called. Middlemore is such a disgusting place, I am so scared of it now. I had to go there the other day for a Gasto appointment and now I have to have a colonoscopy, isn't cancer just so much fun!!! They think I might have diverticulitus but I have learned a lot about myself on this journey. I get depressed whenever I don't feel well, my imagination takes me to all sorts of dark places. I am monitoring it and if I don't bounce out of this period of sadness I will probably have to go on antidepressants! Anyway at least you probably all know how I am feeling. A friend just lost his 16 year old daughter to leukemia a couple of weeks ago. I think I am still mourning my brother and my best friends Dad passed away so that was another funeral, so maybe I shouldn't beat myself up about feeling down aye! I was sad to read about Michael Bubles' three year old son having cancer. Gosh I am just such a sad sack aren't I haha sorry guys. At least the sun is shining today. I've lost my mo jo but I am going to make myself do some sewing today. I have been trying to cover an antique lampshade for about six months, and I normally love doing stuff like this. but I find I have to make myself. I reckon Tamoxifen has a lot to answer for as well. Gawd at this rate you will be glad I don't come on here very often haha! Take care everyone. Promise next time I won't be such a sad sack Fabulous about your girl Nikki. Kruise hope your results were all good? Donna xxx

Nopoli

Hi fizzdon, oh my you've had so many losses. No wonder you feel bereft. I am so sorry for your pain. We're humans and we feel things. It's good to honor your feelings and those precious relationships. I hope with time the sadness will ease up and the nice memories will comfort you. There's no need to apologize for where you are right now. Yes, you've been through the ringer. Time for self-compassion and soul-soothing. I hope this note doesn't come across as presumptuous. Just wanted to reach out with empathy and let you know someone I see thinking of you this evening and hoping you're not feeling too lonely. Warm thought.

M

kt1966

Hi Donna,

I'm sorry it's been a rough few weeks. No wonder you're down! I think most people would be after all that. I hope the sewing went well & gave you a sense of satisfaction And sun definitely helps. I hope your the colonoscopy gets over & done with soon & that the results are good. Will be thinking of you

Nikki, sounds like you had a great day for your 50th I'm not into big parties either, which is why I went for that holiday in Nelson with DH & kids instead. Great you have your mx revision date, I hope it goes well. Now you just need the other one.

I hope everyone is well, & had a good weekend

nik1966

Hoping your appointment goes ok today KT.

Kruise

hi everyone

KT hope your appointment went ok. And you got the answers you were looking for re your symptoms. We are here for you...please vent if you need to. Thinking of you.

Donna - lovely to hear from you again. Sorry you are going through a down time, we all definitely get those. Hope you got your lamp done. Remember each day is a new day and we just have to appreciate the moment.

Nikki - I hope your day surgery goes well on Friday and that your thickening etc is nothing sinister - hopefully just scar tissue etc. Hope you aren't worrying too much about it.

I was feeling very low energy wise today. I don't think I had enough sleep and just been overdoing it this past week so maybe body just telling me to take it easy. Had an appt with my gynae this afternoon and results from polyp and endometrium all ok from surgery. Just have to have another scan in a year.

i have a day in the classroom again tomorrow in Palmerston North for St John so just hoping I feel more awake than I do today. Early start for me.

How's the weather up North been? Has been a bit cold and rainy here for a few days. Some sun would be nice!

kt1966

Thanks for your thoughts girls.

I'm glad your results came back good Kruise. I hope you managed to get a good sleep last night & have enough energy for today! It's really windy here today, with showers in the morning. Yesterday was wet, but at least we had a good weekend, tomorrow should be good too.

Yesterday's appt wasn't great. Basically there are no treatments left for me. The se's/symptoms I'm experiencing are symptoms of progression and they seem to be getting worse all the time. I'm finding it really hard to read & type because of double vision, so can't do so for long.

If anyone was following our car yesterday as we approached the harbour bridge I apologise because I lost my breakfast several time out the window... So increased nausea, headaches etc Fun : /

So now it's on to hospice only - no more trips to Auckland hospital. (Tho I may go down & thank them for their care sometime)

So that's me, still getting my head (such as it is, I'm having a hard time thinking atm) around it.

Take care

kt

nik1966

I am absolutely gutted for you KT (and I know that the rest of our wee kiwi family here feel the same. You are our glue x). I don't really know what to say, so I am sorry if I say the wrong thing . I have nothing to offer except my virtual love and support as you go through this next stage. I know that hospice can help with those symptoms and make you as comfortable for as long as possible. It must be so hard to get your head around it, and tell your family & friends. With love and hugs Nikki

kt1966

Thanks Nikki. Don't worry about saying the wrong thing

If anyone does I can hardly point the finger as I sometimes have classic foot in mouth disease!

I guess I'm ok really, I was kind of expecting it - and was told when first diagnosed with it that I'd have 2 to 8 months, it's been 4 months & still counting....

I hope Friday goes well for you

[Deleted User]

KT I saw your post before but out of respect for those who post here now I wanted someone else to come in first. I too don't know what to say but I'm just sad to hear this. You have fought so hard. I'm thinking of you .

amusingsoprano

I'm so sorry KT, not what you or your family wanted to hear.

shazzakelly

KT what an absolute bugger. Not what you want to hear at all.

Will you get Hospice involved now? They are actually better than the Oncs at symptom management.

Remember we are all here for you so if you need anything let us know. We will make it happen.

Much love

Shazza

Kruise

oh KT - I am feeling just like the others. Saddened and shocked for you. I didn't have a great feeling when you talked about your se's. Have definitely been thinking of you. You probably have so much stuff whirling around in your head right now. As Shazza said, if you need anything, just say. We will make it happen!!

Weird but in my classroom stuff today for St John we talked about palliative care, end of life care, etc. One piece of advice I must pass on to you is that you need to have an Advanced Directive or a document stating what treatment you wish to receive and if you want to stay at home etc. A lot to process right now but certainly time to think about what YOU want. In times when you can't control much, you can control some things in how you wish to spend the time you have. Hospice will be wonderful. I know that sounds like shit right now because it's not what you want to hear but you are so strong and brave Kt. We had the quote mentioned to us today which was quite true "palliative care is about putting life into the days, not just days into our lives". In otherwords, let's make make every day count. Plan your last amazing Christmas with your family. Set some goals. Write birthday cards out for the children in advance. Do things that the gift of knowledge of this disease offers you the chance to do. My Mum passed when I was 23 but she is forever my Mum, so many memories, your children will always have that and I know you will still be able to watch their lives unfold from the other side. We just pass from one dimension to another. Tell them that you'll play a song for them so they know it's you! I know this is so true, I've experienced it and seen too many things to doubt anything but.

As Nikki said KT you are the glue that holds us together so often. You are always asking after everyone else, posting on here when no-one else has, showing care and compassion. We are all absolutely here for you for as long as we can be and longer!

So gutted for you too just as everyone else is. Maybe other countries have different chemo options that we just don't have. Another reason for us all to keep up the fight.

Xx

Twofer

KT, the only words that came to mind were bugger, bugger and bugger squared. Carpe Diem (hope this is right in this context). Hugs, Anne.

woodyhollow

KT my heart goes out to you xxhugs

Optimist52

Kt, thinking of you. I've always noticed how caring and empathetic you are to all of us and my hope is that you will receive that in abundance from everyone around you. I thought what Kruise had to say was very interesting and hopefully helpful to you. Hugs and kind thoughts xx Michelle

kt1966

Thanks so much girls. It's great to have your support. (And nice to hear from musical, twofer & woody- haven't seen you for a while) Great advice Kruise

I'm hoping that I can sort out a good regimen to keep the headaches & nausea (&constipaion, thanks pain & antinausea meds) in control so I can have some quality of life. I actually have been visits from hospice for a while now, but I guess that will step up once I let them know I'm no longer in treatment (I'll prob ring them today). It takes a while to get your head around.

I hope you are all doing well, take care

kt

shazzakelly

Yay it's Friday. Just thought I'd post this picture of one of our foster kittens to brighten your day. Have a great weekend everyone.

amusingsoprano

Cuteness overload!

I can officially say I am over half way through rads now 13/25. Honestly can't come soon enough though.

nik1966

Shazam. Just a gorgeous kitten! How do you not want to keep them

Amusing. Good news with being over 1/2 way. For me the last 1/2 seemed to go faster than the first 1/2. Hoping it goes the same for you.

KT how are you going? Hoping that Hospice is working its magic with making you feel a bit better. You've been in my thoughts.

Surgery yesterday went well. I came out later last night as I didn't want to stay if I could help it. I slept well in my own bed. They've started putting the lures in my feet now 😕, as my veins are so bad. It's weird waking up to that. Anyway, hopefully things fit better in a few months. Pathology results in 10 days. Ovaries next

kt1966

Oh Nikki, I'm glad you're home and everything went well. I wish you a speedy recovery.

Yay halfway thru rads Amazing. I hope you aren't too tired.

Super cute kitten Shazza! How often do you have to feed it?

I've been struggling with nausea & vomiting the last few days. Been to dr & had hospice around, so between them will hopefully sort out. It would be nice to be able to eat (the thought of food is horrible to me right now!)

I hope we all have a good rest of the weekend