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Belinda · 02-16-2007, 03:36 PM

Marlys - thank you for bringing this post forward - it is a great idea!

I am 42. I live in Adelaide, South Australia with my husband Mike (my best friend, a former Kiwi and an environmental scientist who is doing his PHD on environmental asbestos), and our beautiful daughter Lilly, who is 5, and just started her first year of school two week ago. We are a few (too many

) years into converting a former (inner suburban) catholic schoolhouse/chapel into a house, which we share with our dog wags and cat pussymellow. Needless to say all renovations are on old right now! Mike makes me feel like 'we' have cancer and I have never had a moment of feeling truly alone in this.

My 3 lifelong best mates - Kaz, Suzi and Helen - are also daily presences in my life, and the best 'Aunties' to Lilly that could possible be conjured!

I have a challenging public service career. I am the Director of a team that provides economic development advice, and establishes policies and programs for SA. My CEO, the Board and Ministers I report to, and my colleagues have been fantastically supportive since my diagnosis. The deputy they have appointed to role share and cover while I am unable to work is a former colleague and cancer survivor, who knows exactly what I'm going through, which is so good. And, having been told her chemo meant she would never have kids, is about 4 months pregnant!

It's funny, but over Christmas I was feeling more content than ever. It was (and is) summer, I had been spending time with great friends, my happy family, feeling like I had the perfect job, great workplace...then on Jan 3, diagnosis hit! Well, I guess if it had to come, then it was better that everything else in my life was going well, and that's all really helping me get through.

And, I just want to mention my Mum, Janine. She is 62 (sorry Mum! - she reads this board and won't be happy about me mentioning her age - she looks 50). She is a computer and software whizz (not many women can say that about their mothers!!!) who does training for a software company. She lives in Perth, Western Australia (about 2400 kms away) but travels Australia doing consulting work. She has been flying in as often as she can, her employer is giving her as much work as they can in Adelaide. And I love her to bits. Even when she is not here, I know she is sending me air to breathe and wisdom to drink, and she makes me feel - as she has done all my life - that I can do anything. And she has set up my computer so I can use my laptop wireless, and so I can join your chatroom when it's going. I love you Mum!!!

And to all of you who post on this board - thank you for what you share, good and bad, celebratory and sad, informative, challenging and seeking - I am learning so much from you.

Belinda

02-16-2007, 03:36 PM	#118
Belinda Senior Member Join Date: Jan 2007 Location: Adelaide, South Australia, Australia Posts: 144	Marlys - thank you for bringing this post forward - it is a great idea! I am 42. I live in Adelaide, South Australia with my husband Mike (my best friend, a former Kiwi and an environmental scientist who is doing his PHD on environmental asbestos), and our beautiful daughter Lilly, who is 5, and just started her first year of school two week ago. We are a few (too many ) years into converting a former (inner suburban) catholic schoolhouse/chapel into a house, which we share with our dog wags and cat pussymellow. Needless to say all renovations are on old right now! Mike makes me feel like 'we' have cancer and I have never had a moment of feeling truly alone in this. My 3 lifelong best mates - Kaz, Suzi and Helen - are also daily presences in my life, and the best 'Aunties' to Lilly that could possible be conjured! I have a challenging public service career. I am the Director of a team that provides economic development advice, and establishes policies and programs for SA. My CEO, the Board and Ministers I report to, and my colleagues have been fantastically supportive since my diagnosis. The deputy they have appointed to role share and cover while I am unable to work is a former colleague and cancer survivor, who knows exactly what I'm going through, which is so good. And, having been told her chemo meant she would never have kids, is about 4 months pregnant! It's funny, but over Christmas I was feeling more content than ever. It was (and is) summer, I had been spending time with great friends, my happy family, feeling like I had the perfect job, great workplace...then on Jan 3, diagnosis hit! Well, I guess if it had to come, then it was better that everything else in my life was going well, and that's all really helping me get through. And, I just want to mention my Mum, Janine. She is 62 (sorry Mum! - she reads this board and won't be happy about me mentioning her age - she looks 50). She is a computer and software whizz (not many women can say that about their mothers!!!) who does training for a software company. She lives in Perth, Western Australia (about 2400 kms away) but travels Australia doing consulting work. She has been flying in as often as she can, her employer is giving her as much work as they can in Adelaide. And I love her to bits. Even when she is not here, I know she is sending me air to breathe and wisdom to drink, and she makes me feel - as she has done all my life - that I can do anything. And she has set up my computer so I can use my laptop wireless, and so I can join your chatroom when it's going. I love you Mum!!! And to all of you who post on this board - thank you for what you share, good and bad, celebratory and sad, informative, challenging and seeking - I am learning so much from you. Belinda __________________ Belinda Diagnosed 3 Jan 2007, Stage IIb, Mastectomy and axillary clearance 10 Jan 07, 6 of 19 nodes affected, multi-focal cancer, HER2 positive. Second mastectomy (prophylactic). Chemo - AC 3 months, Taxol 3 months - then radiation 5 weeks. Aug 2011 - Diagnosed with Stage IV mets to lung, sternum and 12 or so thoracic nodes - Rads to Sternum, then weekly abraxane and herceptin for 12 weeks. May 2012- good scans - all nodes still about normal size, hole in sternum repairing, lung tumour 'obliterated'. Ongoing herceptin every 3 weeks. Bloods still all good! Life good! March 2013 - recurrence - tumours in lungs and mediastinum (coughing up blood) - immediate radiation treatment to right lung and mediastinum, still on Herceptin, and 3 months of Vinoralbine - stable for a little while! Coughing and breathlessness started again September 2013, treated as radiation-induced fibrosis (which can be seen on scans - albeit stable). ie puffers, steroids January 2014 - cough becomes bloody again, scans show big mediastinal tumour wrapped around and choking the life out of my right main bronchus, radiation deemed off limits as my lungs are hypersensitive to radiation (measured by existing damage from 2013) .....................- ie I am in the 5% of people likely to suffer severe radiation damage to the lungs that they warn you about before starting treatment! (so special! :) ) Started chemo Feb 2014 - continuing Herceptin (continuous since Aug 2011), with Carboplatin and Gemcitabine. Discontinued Gemcitabine because of se's. Starting cycle 5 Herc/Carbo 5 May 2014. Meantime.....coughing and breathlessness increased to SCARY levels with racing heartbeat that won't slow down, breath that won't come back, even just walking to the bathroom or up 3 or 4 steps. ICU from May 5 2014, collapsed right lung due to tumour, small pulmonary embolism (left), tumours growing in mediastinum left and right, dvt lower right leg Plan seems to be bronchoscope next week to see if tumour can be lasered and stent inserted in right bronchus to reopen air access to lower parts of right lung. If that is successful might be able to have brachytherapy to worst tumour, otherwise no more options for external radiotherapy.