I have IBC

Sue, Thank you for all that important information.  I will start tonight on the brushing of the arm.  I don't  have full movement and have a cording scar under my arm which is like a rigid tight band that has healed and stuck there.

You have made me enthusiastic with hope that I can stop the lymphadema.

I'm not sure about the Arimidex as just lately I have been having some heart palpitations while watching TV at night  and I'm ending up feeling really ill from it all but not sure what's causing it.   I have taken my arimidex 5 hours later than usual tonight to see what happens.

I already have a very active life with lots of people visiting all the time, I play the keyboard and my husband has a dance band that I kind of manage and organise all the songs and sheet music for the guys.

I will try the pillow to hold my arm up in bed.  I was given a pillow in hospital for this purpose but  wondered how it would go with me turning over at night..

Strangely enough, I haven't cried since I was diagnosed, I don't know why as I get emotional just watching sad movies or thinking of my pets who have passed on.  My aim now is to have as much fun  as I can while I can. 

Thank you Sue for your input, it has really inspired me to get out that brush.

Love Wendy

Sue, Thank you for all that important information.  I will start tonight on the brushing of the arm.  I don't  have full movement and have a cording scar under my arm which is like a rigid tight band that has healed and stuck there.

You have made me enthusiastic with hope that I can stop the lymphadema.

I'm not sure about the Arimidex as just lately I have been having some heart palpitations while watching TV at night  and I'm ending up feeling really ill from it all but not sure what's causing it.   I have taken my arimidex 5 hours later than usual tonight to see what happens.

I already have a very active life with lots of people visiting all the time, I play the keyboard and my husband has a dance band that I kind of manage and organise all the songs and sheet music for the guys.

I will try the pillow to hold my arm up in bed.  I was given a pillow in hospital for this purpose but  wondered how it would go with me turning over at night..

Strangely enough, I haven't cried since I was diagnosed, I don't know why as I get emotional just watching sad movies or thinking of my pets who have passed on.  My aim now is to have as much fun  as I can while I can. 

Thank you Sue for your input, it has really inspired me to get out that brush.

Love Wendy

Hi Wendy,

Was tinkering on the computer.  Life starts after all the chemo.  How is the Arimidex going?  I lasted a week on that.  Made me drowsy and brain fogged.  Ended up on Femara and no side affects.  For the lymph drainage I bought a bristle brush and I think I got it from the body shop from memory.  Everytime I got into the shower (warm I started from my hand and worked up brushing upwards.  it relieved the fluid build up and I have full movement is my arm.  No after effects of lymph issues since losing all my muscle and all nodes on left arm pit.  The brush worked wonders.  I do not do any lymph draining now.  Am a lucky one as I have scratches etc and no reaction or blow ups.  The brush was used for about 6 months 2-3 times a day. and I forced my arms up every night and massaged them in the air and pushed to the limit even though i had some pain.  You can notice the difference by keep focussing on moving a little bit further each time.

once you have healed do something such as voluntary work.  Keep the mind active.  Find a hobby or sport and learn everything you can about it.  Even play an instrument you wish you could play.

Try not to put weight onto the arm though and sleepwith a pillow tucked up to keep arm elevated at night whilst you heal.  I bought a body pillow and love it.  To be truthful I have 6 pillows on my bed. 

Keep smiling and pull out the battle armour that you tucked away somewhere and remember do not - do not give up no matter how hard the battle becomes.  You can cry - normal emotion.  if anyone tells you otherwise then they do not deserve to be called a friend.  Friends cry with friends.  My boss at the servo where i work has a tear with me every now and again.  Its OK.  Well, Im her favourite employee.  I don't whinge I just go to work and live like there is nothing wrong with me. For a while she thought I was telling raspberries until I showed her a letter that had the words stage 4 metastatic disease and NO cure.  Well, she cut our conversation short and walked off not being nasty as such but she could not comprehend how I can do so much on my own in this servo but the other workers there don't do half as much.  I put it bluntly.  Keeping busy is what keeps me going.  No time to think negative thoughts.  So, to you my counter part in this fight to survive I only wish for you is to live your dreams and do whatever your heart desire and don't worry what others think as they will never understand what you are contending agains.  Laugh and laugh alot.  love to you, sue

Have fun in the bush fossicking, sounds fantastic.   I've had my  6 chemos, MRM and 2/3 lymphs out, 5 weeks of radiation, on Arimidex  and now doing some physio for lymphadema prevention, although I'm worried about the pain I have had in my arm for a week and it is fatter than the other one.  We had a short holiday to Broken Hill a few weeks ago which was a good break from it all.

Love Wendy

 

Dear Catherine,

Good to hear from another Aussie fighting the biggest battle along side our international fighters.  In the end we are all fighting for the same cause to LIVE.   Sorry I havn't written for some time.  So busy living and doing things I want to do.  Planning my 3 week Fossicking expedition with my 2 youngest boys 16 and 12 starting June 18th and going through till 5th July. 

To tell you the truth, when i am not busy I have moments where I stop and think about death and dying.  I feel strong and recently I got my 12 year old to design a tattoo I have on my forearm so that I can have him close to me even when we are apart.  This made him feel that extra bond for me.  The tattoo reads {pink ribbon} on top it has NO CURE and in the ribbon it has the words WARRIOR.  Beside the ribbon the words - When you want to give up, Hope whispers to fight with dignity.  Everytime I feel down those words ring a bell and I push on.

Anyway, still working 25-30 hours a week.  Another bone scan scheduled early June.  Boy, I dread these scans as normally a week before the scan and up till my oncology appointmen the following week, (extreme stress), as I wait to find out if the algae is still holding the cancer at bay or its started to grow again.

Sounds like you are a basketball fan???  I am more into Rugby and support our local Cowboys even though i have never watched a game as my second casual job is in security and I have been doing the games.

When you are in Townsville next, give me a tingle and maybe we could catch up for coffee. 0408797743.  Good days to catch up are Thurs - Saturday.  (days off).

I am all ready for death and have no fear in dying. My boys are involved in my cancer care and everything is discussed openly.  They don't like it, but its real.  Talking will help them in grieving when the time comes.  Sorry, to those who don't like to hear about morbid things but after accepting you can do the battle and live knowing that you have no regrets.

In the end we may have cancer but cancer can only have us if we give up the fight.  My motto is that I can't let so and so down, so i have to keep going.  I do rely on prayer to Mother Mary and have my quiet times.

Oh, one more thing..... If you havn't watched Tuesday's with Morrie, then I recommend you watch it.  It gives true meaning to life.

Well, until next time, Blessings to you all.  Sue

Hello everyone you are all truely amazing what a bunch of beautiful, strong and brave women.I am glad I visited todaythis site as I was not feeling so brave after chemo today.  I have Secondary BC and it has spread to my skin across my chest,and as you'll see I have no breasts so technically I don't have IBC  but it is treated the same, currently on Abraxane Weekly chemo for 3 weeks 1 off not working as well as expected,but stopped the spread so am sticking with it side effects,pretty yucky though.

My cancer started as DCIS in left breast 2005 with gr2 invasive Ductal Carc inside  DCIS mastectomy and full node clearance followed, good news cancer all gone ,2007 following a second opinion because I knew another problem, mastectomy and full node clearance again good news cancer caught early didn't even need chemo.

November 2008 started reconstruction with implants YEH new breasts for Christmas well May 2009,very interesting experience, not what I expected, but they will never sag.

September 2009 last  6 month checkup CA15.3 and  ca125 gone up,wait 3 months then 2 February sent for PET scan ,now I have Secondary BC tumour on left ovary, in chest wall and skin on chest ovaries gone1st April 2010 , I was over them anyway 50 in October. Most days I'm great 2beautiful children wonderful husband and family not so good on proceduresdays though. Thanks for letting me visit, Hey Sue from Townsville I'm from Cairns GO THE TAIPANS.

 

Hello everyone you are all truely amazing what a bunch of beautiful, strong and brave women.I am glad I visited todaythis site as I was not feeling so brave after chemo today.  I have Secondary BC and it has spread to my skin across my chest,and as you'll see I have no breasts so technically I don't have IBC  but it is treated the same, currently on Abraxane Weekly chemo for 3 weeks 1 off not working as well as expected,but stopped the spread so am sticking with it side effects,pretty yucky though.

My cancer started as DCIS in left breast 2005 with gr2 invasive Ductal Carc inside  DCIS mastectomy and full node clearance followed, good news cancer all gone ,2007 following a second opinion because I knew another problem, mastectomy and full node clearance again good news cancer caught early didn't even need chemo.

November 2008 started reconstruction with implants YEH new breasts for Christmas well May 2009,very interesting experience, not what I expected, but they will never sag.

September 2009 last  6 month checkup CA15.3 and  ca125 gone up,wait 3 months then 2 February sent for PET scan ,now I have Secondary BC tumour on left ovary, in chest wall and skin on chest ovaries gone1st April 2010 , I was over them anyway 50 in October. Most days I'm great 2beautiful children wonderful husband and family not so good on proceduresdays though. Thanks for letting me visit, Hey Sue from Townsville I'm from Cairns GO THE TAIPANS.

 

Hi Keli,

Men are hard basket cases and most do not realise the damage they do to women who enter and work in a male dominated environment especially after losing a big part off yourself and having fear run through your veins off not knowing what the future holds.

However, you are a strong person for going back and you deserve to be there like each and everyone off them.  The fellas who are giving you a hard time by causing you distress should be reported for harrassment.  Especially if you have told them to back off.

Tiredness is something we all deal with in our own little ways and once we know our limitations we remember to take the time to rest up and look after ourselves as being in stressful situations would surely speed up the spread or form new cancers.  The immune system is already compromised and working overtime. 

Its time you put up some ME time and take the time to find something you enjoy and reward yourself.     The hardest part in life is that when we feel depressed or we go through negative thoughts or worrying about what someone else might think off us or how they percieve us since going through this ordeal.  This is about you.

Hormones or lack of these cause emotional breakdown.  It is something we all must accept and being truthful, even though many may see me as a strong person, really I still go throught the emotions like everyone else.  I have my moments and you have that right too.

I am estrogen positive, that is why i had an oopherectomy to reduce estrogen travelling through the blood and feeding the cancer.

I am tired too but I get over it very fast as i keep busy.  I have a nap every day between 12 and 3. 

The algae gives energy and even though I have metastatic spread too the bone, many people would not see me as stage 4 even the nurses up at oncology.  They say I look so healthy.  When you get the algae, start off with 1-2 capsules a day and build up to 4-6 a day.  Will take at least 7-10 days before it starts working. 

 Keep a track on your blood tests when you go to the hospital.  Your doctor will give you these if you ask.  Get a folder and keep track off them.  This will give you more control over the treatment plan.

Keli, all I can say is that you have guts and glory working at the wharf especially after what you have been through.  If you are not happy there, maybe its time to find something that you enjoy. 

In the end its not about money its about living.  As you can not take money or material possessions with you.  Do up a list off things you want to see and do and start that now.  Don't make any more excuses.  Just do it.  As when time draws near you do not have any regrets.  Don't do things for the sake off doing them.  Do them because you want to do them.  Do not please anyone but yourself.  If you don't like it then say so.  Ok.

Time is precious especially when we live in uncertainity.  My love and blessings to you.  Sue

 

Hi Wendy,

The website for these capsules:0

http://www.klamathbluegreen.com/information-about-klamath-blue-green-algae/information-about-algae-klamath-lake-blue-green-algae-afa-blue-green-algae-blue-green.html

 

http://www.bluegreenfoods.com/shop/proddetail.php?prod=Stem-Cell-Activator

I purchase mine online and for 4 months supply off 500 capsules it costs around $150.  I take 4-6 per day dependant on my stress levels.

I take the Klamath Lake capsules from Blue green foods as they have a neurosurgeon who has researched the product but really it comes down to processing off the capsules to give you higher amount off absorption.  The Selenium tablets are Sandra Cabot's one I get from the discount chemist here for around $40.

I still take my Framara as well.

If at any point any off the readers on this forum have any concerns and their oncologist does not know the answer, then do a phone consultation with Dr Mc Carthy, far better talking to a doctor who travels too America and stays on top of treatment etc and has a passion with IBC patients.

Not sure how to have my original blog put out to the other ladies to give them some direction and to let them know that they can live life or give up.  I chose the live life with dignity.  Blessings to you and LIVE your life.  No matter what happens at the end its the journey that you take between now and then that really matters.  Don't give Cancer the upper hand.  Go back to work and work for 15-20 hours a week to feel normality.  If not for a pay packet then volunteer and you will gain so much from that spiritually and feel a sense off worth.  Sitting at home is another thing, you get surrounded by walls and think off the worst case scenario and get into depression which also puts cancer in front.  Again, be yourself.  Do what you want to do.  Be crazy and do a tafe course and keep the brain busy.  When the brain is busy it can't think off negativity. 

 My love to you and the other ladies. I can talk and really Too Busy to Die.

Sue

 

Dear Sue,

Thank you so much for your story, I have read it twice and still need to read it again to aborb more (chemo Brain).   Can you please tell me more about this Blue Green Algae?  Where do you get it, what does it do etc?   I'm already having a handful of brazil nuts a day to get my selenium but don't know anything about the algae.  I'm having radiation treatment at the moment, and on hormone blockers,   Before my surgery I wrote to Dr McCarthy for some advice on whether to have a lumpectomy or a mastectomy.  To my surprise she actually wrote back with what she thought best and the pros and cons of it.  I am very grateful to her as she helped me make a very difficult decision.  I agree with with everything you say, it takes a while to get to the acceptance stage though :)