Monday, February 21, 2011

Cycle 8 of Chemo

I cannot believe that I am starting cycle 8 of chemo soon. This will be my last month of chemo on the trials department.
I had a meeting with my 2 oncologists on Friday. My doctor will be attending the meeting for the drug she wanted me to be on - to see if the drug will be released to tier 1 medical aid patients sooner than later. If this drug does not get released sooner than we anticipated then I will be put on the mother of all chemos - RED DEVIL. My current chemo that I am on now is a walk in the park comparred to this stuff. So not stoked for that at all but it still excites me that it's a further hope to get better. Bring it on I say!!
I'm finding that I'm growing more and more old lady like as time goes by. I have such intense back pain in the mornings that I struggle to get out of bed at times. 
I am quite excited for our support group this year. I recently got together with the main organiser/ Chair person in CT for Breast Buddies and we have come up with some great ideas to get us out there and make 
the awareness bigger. It may sound funny with me currently still on chemo but I enjoy getting this kind of thing out there. If I can empower people to be aware and help the cause then I am more than happy :)
We are getting some marketing put togetehr such as our own buffs, rubber band bracelets, cool and quirky shirts - I hope it really takes off.
We are going to host such events as quiz evenings, A Mad Hatter Tea party, launching a calendar with fighters and survivors and a Pink Coctail event (which we will do a reveal of the calendar). If anybody has any great contacts for sponsorship/ prizes then please let us know. We need as much help as possible :)

Saturday, February 12, 2011

I changed the name of my blog for now - simply because the word hope is popping up so frequent lately. I may even have that word tattood on me instead. To me Hope is inspiration, it's a goal, it's the little thing that we clutch onto no matter how bad a situation can be.
I had a super bad day yesterday - I was really down. I sat down in my doctors office and she broke the news to me that my medical aid does not want to pay for my new treatment because it's new on the market and very expensive - but yet cheaper than the chemo and Herceptin I am currently on in trials. I was so mad it was unbelievable. I am assured that trials will have me for as long as possible (which I am happy about) but it's not the best solution at the moment because I could be growing immune to the chemo.
I ended up in tears in the doctors office - the worst thing about having cancer for me is not knowing the unexpected. You hold onto every shred of hope and positive thought that all will work out and then stuff like this happens....Doctors are trying to negotiate with them but we'll see what happens. There are other options but it still all sucks. Shame - my trial doctor is a complete angel. She sat down beside me, hugged me and completely understood everything I felt then and there. She's been through all the same stuff when she was 22 years old and matched every sentence to what I was thinking.
See - more waiting. I swear medical aids are just around so you can stress and end up with heart faliure or something instead!

Tuesday, February 1, 2011

Something I have learnt while having the dreaded C is you experience a hell of a lot of waiting. You’re always hanging on the edge of your seat for an answer. This week I am waiting for a final answer on the new plan of action.
It is confirmed that my body seems to be growing immune to the Chemo now so a new plan of action might be rolling about soon – new chemo. Meh.
This all means I will have to come off the trials that I am currently on which means a bigger worry of course when it comes to my measly medical aid. My medical aid at the end of all this might give me heart conditions too just because of worry alone.
So anyways – I had genetic testing done and my doctor called me in to discuss the results. I tested positive for the breast cancer gene of course. It’s very clear that it is hereditary meaning my family needs to have necessary testing done as well as confirming the needs of me having to have the lump removed.
The lump can only be removed when the primary source in my breast goes down because the area is a very difficult area to deal with being just ‘below’ my breast. It is positioned just above my rib with not a lot of skin to use (trust my luck).
This new form of chemo won’t be done through my port this time – instead it will be done orally in pill form together with another drug similar to Herceptin. Unfortunately symptoms are still the same – just no hair loss (yay!).Just as well because the hair that I have lost is sprouting back looking a bit spiky at the top of my head. It reminds me of a grass head that kids grow – looks kind of funny but super grateful that I didn’t lose a whole lot of hair. I think it would have made things a lot more difficult.
Getting a bit fed up of all the weight gain since the treatment. I have put on ±10kgs. I keep telling myself that at least I am eating and it’s not a whole lot of weight loss making me look more ill but can’t help but feel a bit self conscious about it. I tried the healthy eating but it seems like the steroids are winning the battle here instead so I tend to eat whatever I crave still eating healthy when I can.
Guess we’ll have to wait and see what the doctors confirm on Friday…