I have been talking about doing this for several months now with the women I have met in New Zealand and Australia. I had been collecting emails from the international IBC mailing lists I belong to, but had been too caught up in my own life and health to do anything about it. With joining the committee of Breast Cancer Aotearoa Coalition and knowing if we started the group they would support and publicise it through their networks, it gave me the impetus to put the idea into action. I sent out emails to the addresses I had plus sent a message though to the mailing lists to pick up any ‘lurkers’ I may not have contact details for. Within 4 days I have had positive responses from just about everyone and as of today we have 13 members. It is so exciting to be part of this, our hope is that we will be able to link up more with women who are newly diagnosed with IBC so they dont feel so isolated and alone. Belonging to the international forums is good but there is a need for a more localised network, one that understands how our health systems work. With Inflammatory Breast Cancer being rare but also one of the most aggressive forms of Breast Cancer, you can feel that you are the only one dealing with it. I was lucky that my breast surgeon put me in touch with L , a long term survivor, but most women with IBC dont get that.
Hopefully this network will give them that chance.
Posted by jaydub26 on September 19, 2011
You may have noticed a gap in my usual blogging timetable. I try to write at least once a week so you dont end up with long boring diary-like entries ‘and then….and then….’
Last week has been both busy and unhealthy. Just when I had an assignment due 2500-3000 words on an aspect of health social work and ODs official engagement party, I also got sick with a bad cold virus. I went to bed last Wednesday to try and shake it off which did work long enough to let me get my assignment finished for Uni on Friday, and do some work on organising the ‘Australasian IBC Network’ but the late night for OD’s engagement party on Saturday night has put me back several paces and I have spent most of Sunday and Monday in bed again. I am feeling better today, not coughing as much and head feeling clearer.
The biggest news other than this last week is that I have discussed with my oncologists, at my appointment last Tuesday, whether or not I can have a chemo vacation for a couple of months over summer. I had got quite depressed after the last oncologist appointment when they had said they wanted to keep me on xeloda til it stopped working. The thought of the side-effects – the fatigue, the sore feet, the diarrhea being ongoing for more than a year and then me having to switch almost immediately to another chemo got me down. So I have asked for a chemo-cation over summer. I want to be able to walk along the beach without worrying about my xeloda-affected feet. I want to be able to get out and about without constantly battling fatigue. I want my life to be just a little more ‘normal’ than it is now. My life and cancer and sideffects are manageable now but I wouldn’t say it is giving me a ‘normal’ quality of life.
And that is the thing with metastatic cancer when you know the chemo is just prolonging your life, controlling but not curing the cancer – you need to think how you want to live that life. For me that means I want the chance to have at least one more ‘normal’ summer.
They will do more scans towards the end of the year and if it continues to show good shrinkage of the tumours they will give me the go ahead to have a couple of cycles at least off. Here’s hoping that what happens.
Posted by jaydub26 on September 19, 2011
Just a short post to say that my short stories that I wrote about in this post will be published in a collection of writing by members of Sweet Louise (women with secondary/metastatic breast cancer) – it is just in the editing stage at the moment and the title is still to be confirmed but the book will be launched at the beginning of December. I will let you know more details when I know how, and when, it will be available for purchase.
Several people have said I should turn parts of my blog into a book. What do you, my readers think – is it something I should work on?
Posted by jaydub26 on September 10, 2011
I deliberately didn’t write a blog post until now so people would get a chance to see MD’s post as I was so proud of her for writing such a beautiful piece. And from the comments received both on here and when I shared it at Mothers with Cancer it struck a chord with a lot of other mothers, especially other mothers with cancer or with children with special needs.
I also had the dreaded end of winter/ season change usual run-in with a headcold, which laid me low for about a week. Luckily, or unluckily it was at the beginning of my mid semester break from university so it was just a matter of resting and recuperating.
Since I have got over that head cold – I have felt a great deal more energy, less fatigue, and think that is due to me starting the Aqua aerobics. I am only going once a week and it totally wears me out on the Tuesday night when I do it, but I have really noticed a difference in my fitness levels. I am still terribly unfit but can do much more than I could before. Being in the water is so beneficial and as I get fitter I think I will step it up to twice a week and then start swimming laps.
I have been a bit slack about getting onto an assignment due next week for one of my papers – being on semester break really isn’t conducive to study.
As my feet have improved quite considerably from the state they were in after our Gold Coast trip, I have tried to get out and about more. I bought new sneakers to wear after that trip as I realised my old ones were now too wide for my foot and allowing too much movement, increasing the friction, and therefore helping to lead towards worse ‘xeloda feet’.
I did run into a woman when I was out one day who sneered as she looked me up and down, looking pointedly at my sneakers (worn with leggings and a long tunic top) but as I tweeted ‘Hey lady, I’ll swap you my chemo side-effects for your hoity-toity attitude about me wearing sneakers with my outfit’ – I’d love her to literally try to walk a mile in my shoes. She doesn’t realise how hard that is for me at the moment. Wearing the new sneakers is the only way I can do any reasonable amount of walking without re-blistering my feet, they still get some burning sensations on the balls of my feet if I don’t sit and rest them every so often, but I am definitely achieving more mobility than I was.
Posted by jaydub26 on September 8, 2011