@sn25 love the cap! I’ve started with 12xpax and so far doing ok. @salbert maybe shopping for more black frocks? @arty1 get it that its good to do normal but try not to get too tired @gromit12 really hope you get neuropathy sorted. On a related theme… I’ve got a slight loss of feeling in my left hand, no pain or pins and needles, just my fingers don’t feel they quite belong. Im wondering if the chemo has picked up on some loss of feeling I first had after some hip surgery last September, it had gradually come back but has now gone into reverse. Just wondering if anyone else has experienced anything like it? I’ve just permitted myself a walk round Waitrose looking tor something I might want to eat over the bank hol, and somewhere I never enter without a specific list. My bank balance needn’t have worried, I didn’t find anything I fancied. Perhaps this potato ice cream might prove a winner? Hope you all stay ok over the weekend.
Dear friends,
I have an urgent help to seek from you all. We need to file a complaint against my partner’s hospital and our oncology doctor and team. My partner was scheduled for her 4th dose of Kadcyla today, in the morning. We reached the chemo unit on time and kept waiting for our medicine to arrive up until 5:30pm today! Our medicine did not arrive and now we have been asked to come back on Tuesday for her dose. The guidelines clearly state it is a 21 day gap between each dose, unless the blood works are not right. However my partner’s blood works were within the limit and thete was no need to dealy or modify the dosage. Moreover the doctor has reduced my partner’s dose ( on paper) without informing us because of her own confusion and dare I say lack of knowledge after looking at my partner’s blood works. My partner’s liver enzymes were well within the limit for a full dose yet the doctor reduced the dose on her own . When we requested to meet the doctor today while waiting for the actual dose to arrive from the chemist, she said it was a mistake on her part but it is okay if the dose is less as more medicine is never good. Can you imagine, a doctor so casually saying this, while somebody’s health and well being is on the line. I mean I am so so so angry and baffled by such stupid explanations and what doctors do to cover their mistakes. And after all this fiasco the dose reduced or otherwise did not even arrive after waiting for an entire 8 hours in the ward! This is super unacceptable 
We really need to file an urgent complaint, could someone guide us please…
I would try and get in contact with the hospital PALs dept, but it’s quite late on a Friday with a bank holiday weekend approaching so I’m not sure what you can do. I hope someone else has some advice. I hope it’s resolved and they rectify this, it’s so careless and out of order to put her (and her loved ones) through this.
This made me chuckle the amount of times I go into Waitrose for inspiration which turns in to my bank account draining pretty rapidly 
Yes I think we will not get the dose now until we speak to someone and get fresh bloodworks done based on which we will have them decide the dosage within recommended guidelines. Yes the NHS is burdened and everyone is trying their best but a handful of such health practitioners really are taking it really down in the pits with this attitude. The doctor also had the audacity to say, oh god how did you notice the dose was reduced, most people don’t even bother to see, you are a clever one aren’t you! My partner is so angry at the moment that we are still sitting outside the hospital and trying to calm ourselves down. What a stupendously irritating day it is!
Go through PALS is right.
Look on the hospital website for them and it will guide you on how to do it.
Then be very factual about it, I can absolutely get it how awful it feels, but your complaint will get you further if its not emotive. Tell them what you expected, what happened, what you were told as the situation unfolded, what you concerns are and what you want to happen in future.
So sorry you’re having to do this.
Absolutely this is what we think we will do. Facts and very a straightforward complaint, let’s really hope they do something about it and this complaint doesn’t come to bite us back later as we still have a year’s worth of treatment to get through under this team 
No reason it should disadvantage you in any way. You are offering constructive feedback. To balance it you could always pick out anything from earlier experience that you thought was done well!
What a condescending git (the doctor re noticing the med reduction). Ugh, I loathe doctors like that. Maybe there’s someone still in the PALs office (my hospitals I attend close at 4-5pm but not every hospital is the same)?
Document EVERYTHING while it is fresh in your mind for PALs, in case they try and come back with excuses or whatever, make sure you’re prepared (also will help get it vented and out of your system).
Thats a very good suggestion! We will try to put it out in a constructive manner which doesn’t feel like we are being ungrateful. In the last one year and specifically in the last few months, we have already been ( indirectly) made to feel how grateful we should be to get this medicine as it is quite expensive.
My initial surgeon was a very cold fish, I spoke up and got an excellent one. Don’t be afraid to speak up, this isn’t a trivial thing. You have paid into the NHS and shouldn’t be made to feel anything is too expensive (I got told that about my filgrastim and the ports and it’s so irksome). Be POed, the NHS belongs to us (I work in it and we need constructive criticism, or it’ll never improve).
The amount of patience we have had to display with such doctors like this in the past year , has been nothing short of deserving a big huge trophy. I am making all my notes, while my poor partner is sitting here crying her heart out. The frustration and the tiredness, the gathering of our courage every few days to go into that hospital and get this infusion with a smiley face on is such a big deal. I so wish the doctors put in a but more effort to sympathize and empathize a bit more with people in treatment. I hope the world understands how much kindness, compassion and sincerity is required even more in today’s day and age. We are so so tired 
Dear @sez - Thank you so much for your kind and encouraging words. It means so much at this very moment. I am reading out your messages to my partner and she has asked me to say thank you to you for giving us courage and guidance. And yes the NHS is ours, we have paid for it to run as efficiently as possible !! We are going to fight it out, can’t let a few health practitioners take the level down 
Thank you so so much 
It’s so hard being in that situation, I hate that feeling of powerlessness, it just makes everything feel worse.
I just wanted to make sure you didn’t feel like anything was your fault.
You’re so limited in what you can do (typical SNAFU that it always seems to happen when you can’t get hold of people for days) in these situations and you’re left to stew on this stuff until the staff get it resolved.
I tell staff all the time when they make a sly dig or whatever about me trying to be organised and trying to get some semblance of control that patients have pretty much no say and are just told what to do and where to be and maybe, if we’re lucky, what to expect so of course we’re going to want things to run as smoothly as possible. If we could control them so they were, then we would, alas we’re just bossed about and told it’s for our good.
My oncologist always says she’s relieved I advocate for myself cos she says if anybody else messes up somewhere she knows she’ll hear about it, and I told her too bloody right.
I wish you could be having the majority of staff I see, I’m lucky all the dreadful experiences I can count on just my hands (no feet or other appendages), and the good things outweigh the bad, but some of the bad were so bloody horrible. They’ve definitely had me in tears a few times and extremely frustrated. I always thank the lovely staff profusely when they treat me well, I’m so grateful they’re not like the shite ones.
Exactly!!! People in treatment are just looking for an iota of control , of not feeling so powerless all the time, of not having to feel like individuals who from fully functioning healthy beings have suddenly been reduced to adults with little to no control over what goes into their body, about how their body decides to react or how their social lives have become. Kindness and real support is what is truly needed and somehow that’s the one that is so difficult to get in this journey
Wow @hoggie that is amazing. Well done to your daughter as that is a huge help to you.
@sn25 I had 4xEC and pax is much kinder.
Hy all got my 2nd kadcyla last week and im feeling great. Had my planning scan and got my 3 tattoos, sitting in cafe at beatsons hospital having lunch with my sister and a lady came in and rung the bell 
both me and my sister got emotional. My oncologist phoned me last night to inform me that my planning scan had showed inflammation on both my lungs so i have to get a CT scan. Told me not to worry, which now has made me start to worry. Has anyone else had lung issues? X
@caz591 well done on kadcycla, long may it stay that way. Hope lung issue turns out to be ok. Dogs and I have just been down to spy on our local park run and there were a few walkers as well as the scarily super speedies. They seemed welcoming so Ive bought replacement trainers to break in and a dog and I might just tag on at the back next time. Wishing everyone a reasonable weekend.