It’s not worth this. Said Dr Vy
So I’m taking a break from the Nerlynx, for 2 weeks anyway.
I asked what my prognosis was without it (which I normally have a rule about NOT doing under any circumstances). She told me a story.
She said: Having a 7 cm tumour and one possible lymph involved, had I just had the surgery, in 5 years time I would have had a 45% chance of reoccurance. Had I had surgery then chemo, that chance would drop to about 13%. (Up to about 5 years ago that was the protocol). Since I had chemo first then surgery with NED (no evidence of disease) that statistic is harder to determine but is a much better prognosis than 13% and add with that your targeted Hercepton and radiotherapy, you have done everything you can. The Nerlynx is just a bonus.
I then asked if it were to come back, where is most likely?
She explained, the brain which is where Nerlynx comes into play. Hercepton does not protect the brain however because Nerlynx has smaller molecules, it’s thought it can provide some protection for the brain however the treatment is so new there is no real evidence YET for this to be a guarantee. It’s not like I can say for sure if you take it or if you don’t take it, these will be the benefits/consequences.
So with that we made a decision in 2 weeks, to start again on a lower dose and see how I go. If I tolerate it I can increase the dose, if I don’t, we’ll stop it for good but nothing is worth you feeling like this.
In addition she reminded me, as part if the prognosis conversation, that the longer I go with NED the less chance of reoccurance however as I turn 60 my chances increase again along with the rest of the population for contracting an age related cancer, possibly a new/different cancer! Oh the joys of growing old.
She also reminded me the best chance I have for protection is staying on the hormone blocker.
The biggest kicker for me on this drug was the nausea, heartburn and fatigue. I seriously felt like I was on chemo again. Vy said it should not interfere with your everyday quality of life and if it does then I don’t actually want you to continue. If you were feeling this way on any other drug, we would be having a conversation about you changing meds and that would even be with chemo which we know has a definite, quantitative, measurable outcome. She was happy for me to call it quits right there (and last night so was I). But I’ve never been a quitter so I’ll take one last crack.
When you wake up crying, say hello to the receptionist and choke back tears, then step into the oncologist consult room and cry, you know you are not going to make it through the day at RSB.
On a side note Foster is seeing a sports Dr today for his back pain so with all that being said and everything I need to digest (literally and emotionally), I’m having a mental health day. Thoroughly earned, deserved & required – because I’m worth it.
MEANWHILE three songs have resonated with me of recent days and along with some amazing women I dearly love that give me strength every moment I’m with them, that are all worth a mention.
First (in no particular order BTW). My two soul sisters (sister-in-laws Dana & Michelle), which I have more in common with than I ever knew. Supportive and generous in their own unique ways.
I visited my wise and uncompromising friend on Friday where we agreed to always be 100% genuine, frank, honest and authentic with each other. A most important relationship filled with vulnerability, strength, support and non-judgement. Such a rare and unique experience we share Tash.
My superb original WAMS (WAGS version of footy & forty something Wives and Mums). Introduced me to a song on Saturday night “Fuck You”. God we sang that with passion, each for our own reasons and it was empowering. Love you ladies Chez, Gabs, Kym, Donna & Paige! (Sorry I was grumpy and un-fun).
This morning I ran into a fellow Hercepton buddy and world traveller, Trina (I just hate saying cancer surviver, patient, whatever cause it is just NOT what defines us) but needless to say we met in neighbouring chairs and I believe have been friends ever since, helped of course due to her being an avid Crows supporter and footy and sports lover all round. Always with the right things to say and just an inspirational woman.
I sit here now and have heard my other two songs Gotta get through this Daniel Bedingfield & Good as hell Lizzo. Google all three, listen to the lyrics, feel good.
Thoughts are with all in NSW battling they’re own hell on earth with the fires. May God be with you.
Happy days xx