6/9 Back to Wonford (hate this place) meetings with Consultants

 The high of finishing chemo has this shadow over it and that is today’s consultations.  You just want to STOP THINKING ABOUT IT ALL! First off meeting with Dr Hwang, oncologist, nice enough man but no real personal skills, all very clinical and matter of fact!  IM NOT A STATISTIC, IM A PERSON! Do they not realise how talking to you like this is so detrimental to mental well-being!  Oh and once again he was late! I hate people being late! I HATE that I have to have more drugs to control my oestrogen or at least stop it being absorbed.  But completely understand the  reasoning.  But once again it’s not my choice, not really!  By having all the treatment I’ve been through and still to go through I statistically increase my chances of survival, but these are not choices, there’s no way to evaluate whether doing it differently in a parallel world, that if I didn’t do this what the differences would be in outcome! I have to go with what they statistically suggest for me and for my family!

So, short version of mind boggling meeting was that, 3 weeks after surgery we meet again, by then they’ll know if surgeon has got the clear margin required/wanted.  If she has it may only be 1 week of radiotherapy (which by the way can cause pain, burning, changes to skin, damage your lungs and ribs and potentially your heart! - wtf!), if margins are still not clear then it could be 3-4 weeks of radiotherapy! I will also be starting a monthly injection for two years to turn my ovary off (not what he told me before - said if my period came back I’d need this (or I could have further surgery and have my ovary removed). After radiotherapy I start a 7 year daily hormone tablet to stop me absorbing any oestrogen produced in my other cells (if I can cope with side effects).  Because oestrogen is really important I’ll receive 6 monthly injections for 3 years to protect my bones, plus vitamin D and Calcium supplements.  Obviously oestrogen is important for a lot more bodily functions than just bones so going to have to find out how to support other areas differently, but without oestrogen! 

He then chucked another drug into the mix! Whoopee! This one recently approved by NICE can also be taken twice a day for 2 years and also offers a 4% value added to my total statistics in helping prevent reoccurrence!  Oh but it can give you the SHITS in a big way!  Well thanks for that, sounds like a fucking joy! Plus I need further monitoring as increased risk of immunity being compromised! There is a difference between being kept alive and living.  For me I have the difficult decision in whether I accept this new drug or just stick with original plan!

Next I have the pleasure of going back to Breast Care Team and Miss Olsen! 11am appointment and nearly an hour late before I actually saw her! Sat in a stuffy room with bloody stupid cape on, waiting and waiting!  I wanted to decline surgery she had suggested for the clearer margin and have something simpler (this felt like the only control I could gain over today).  I imagined that she could just open me back up and scoop up the extra 1-2mm and leave me with an emptier boob!  But of course this isn’t that simple!  Feeling once again like a piece of meat and not a person she showed me that because the cancer cells were so close to the anterior margins on 2 sides she’s aiming to take another 3-4mm all around the original tumour site, then because this will leave such a big cavity she will use the top of my belly to fill in the gap! Unfortunately because I have very little breast to work with, in her opinion it’s this or mastectomy (once again clinical jargon, patronising it feels to me).  I found this all very upsetting, both because my choice isn’t valid, it’s means a 2 hour op and back to worrying about whether they get all the cancer cells removed!  Op booked for Thursday 5/10 (my mums birthday).  

Finding it hard to put a positive spin on today and move forward in continuing to recover from the effects of chemotherapy! My mind is sad!