Breast Cancer and Nirvana

I decided to keep a blog http://andreabc2.blogspot.com/ when I was diagnosed with BC in April.  I thought it would be useful to record my thoughts during the mastectomy and breast reconstruction process and useful for others as I wouldn’t need to explain things over and over.  I am lucky as I have lots of friends and family so there was lots of stories to tell and retell.

Sometime in June/July, I had an idea about a website that would pull together all the BC support services in NZ.  There are such amazing support services out there but I wasn’t convinced that they were easy enough to find or all in one place.  I also thought that it would be cool to have BC experiences on the site so that people could learn about BC.  Also, some friends asked about resources for supporting people with BC so my idea was a website to meet all of these needs. 

Then I read an article about Serena Star Leonard http://www.retireyoung.com.au/ setting up websites.  With her support, I have set up this website www.breastcancernirvana.co.nz. And thanks to Tessa for designing a fab logo http://www.tessaneedham.com/.  The idea behind the name BC Nirvana is that with the right support and attitude, BC can have some positive spin offs.  Obviously, BC can be depressing and is definitely life threatening, but even amongst that, it can spur us on an amazing path of self-discovery and enlightenment.

So..this is the end of my previous blog and the birth of BC Nirvana.  Please check out the new site and leave your comments.  Also, please pass this on to others you know who have or have had BC.  I would love them to write their story or write “what I wish I’d known about BC” from their experience.  It would be so helpful to record these experiences to assist other women; there is so much value in all the different experiences, tips, hints and lessons learned.. Or let me know if there are articles you would like written.

Also, sorry about the gaps on the site.  Over the next months, I will gradually fill out all the website content.

Thanks to all the support I have received from friends and family.

Pre chemo

I have been advised that I’ll be starting chemo in two weeks’ time.  There are a few things I’m doing to prepare:

·        Move house (as I won’t feel like doing that once chemo starts) as I am now on leave without pay.  I’m moving in with my parents until I’m back working.

·        Pre chemo medical appointments – a heart scan (it will be a baseline for to track if chemo damages my heart) plus a number of other GP, Plastics Unit etc appointments.

·        Set up things in my parent’s place so that life will be a bit easier e.g. get another TV set up organised (Rugby World Cup in all . 

·        Finances I am also in negotiations with WINZ and HR to see if either can assist me financially during the three month period.  There is always a lot of cancer-admin (cadmin).

I have been going through a psychological process of accepting that I am about to do chemo.  I don’t know why it was such a big shock but it was.  I think, from BC1, my biggest fear was doing chemo again and I just plain old didn’t want to do it.  Not wanting to do something is not a valid reason however for not doing it e.g. teeth brushing or eating broccoli.  Sometimes you have to do what you have to do.

I have been re-remembering how chemo went last time and lowering expectations of myself once treatment starts.  My goal last time was a walk of half an hour a day (usually by the sea), to take my medications, to eat something and then lots of rest.  So stocking up on DVDs seems the right thing to do.  I will also keep a chemo diary; thank goodness for this laptop.  It’s not a good idea to do much socialising as my immune system will be compromised but the odd social occasion will be good.  It is as if I’m preparing to go in to a type of hibernation. 

12 weeks doesn’t sound as bad as three months.  I will definitely be counting down the treatments and looking forward to life post chemo.  And I certainly hope that these drugs CMF plus Herceptin will be mild!  Thank Goodness I had my holiday earlier this year (the photo is of Irish mosses from the country side). A

Never say never

Last week was a challenge.  I seemed to have one step forward and two steps backward; it would have been better to stay still in one place the whole week.  However, overall, I am doing well.  My breast infection is nearly fully healed and I am getting less tired each day.  I think the last few months was just getting to me.  Since April 19 and the diagnosis, life has been an emotional roller coaster. And it does feel like a LOT all of a sudden.
Also, I was dreading going to the oncology appointment on Thursday.  In the end, I went on my own as I thought that was just easier..
The oncologist - Kate - was very thorough and helpful. She informed me that the tumour was HER2+ which means it is more aggressive  That sucks as it means that...we do need to be safe not sorry in the approach.  So the oncologist recommended three months of chemotherapy - called CMF - plus a year of Herceptin.  Obviously, this is not how I saw my year heading AND I have always said, I would never do chemo again as the last experience was so awful (coupled with the fact that I still have some of the side effects from last time eg nerve damage).  However, as JB says, Never Say Never. After a headache, many tears and a bit of depression, I must say that I don't want to do chemo again.  But that does not mean that I don't need it.  After looking at a logical criteria for decision making, my main deciding factor is that I don't want a regret. ie in five years time, if the cancer came back, I would really regret not having done chemo.
Kate said that CMF would be milder than the last lot of chemo drugs I had - AC plus Dosetaxyl. I will not feel as sick and not lose my hair. She also said that if it affected me too much, I could stop after one treatment and just do the Herceptin (though there is not much research on Herceptin only treatment).
It is only 12 weeks I have to conclude. Four treatments each 21 days and that is only 12 weeks.  With that in mind, I now want it over and done with as quickly as possible so I can have that side of things finished by Xmas.
The year of Herceptin is another matter entirely.  It only takes half an hour to administer and is generally easily tolerated ie just a dull headache and tiredness.  The issue of finding veins is quite problematic too as...I don't have many good ones. It makes things harder than need be but is really common on this side of the cancer journey.  All the blood tests and needles just cause so many issues.
So all of this stuff leaves me in another dilemma - work.  So what will I do. Last time, I worked as much as I could during chemo and said I wouldn't do that again.  So I guess I will take that time off but how I support myself financially is another question and for another week...I just don't know yet.
It has been an awful few days but I begrudgingly have to admit that things could be worse and that many people do have things worse.  However, I still am not okay about all of this and this is the challenge over the next weeks.  Not that anyone is ever happy to do chemo but the goal is to be at peace with it at least.
Thanks to all the friends and family who've assisted me through this decision making journey.
Later gators x A