Chemo deferred due to Neuropathy, mixed emotions

@Nefertari I feel your pain as I have been "lost" in the hospital system, too.  Mine was for rads setup not with something as major as a mastectomy and I should say that my issue was a bump in the road - my treating team were great after that.  You need help with this - it's more than you can manage on your own.  And it sounds like any reassurances you get from the reception people are going to be less than reassuring. 

My suggestion is, document it (or get someone to help you if it's now too overwhelming) and take it to whoever the patient liaison person (hospital registrar?) is at the hospital with copies to your medical team.  Be careful to criticise the process rather than the people (unless there are people you feel need to be criticised) as you're not trying to create ill-feeling but rather impress that the situation is untenable and that their systems and processes need reviewing.  Emphasise how it has made you feel during an extreme health event.

Do you have a breast care nurse?  I ask this tentatively as I know they are few on the ground and not always that great at helping but I gather the ones who are good, are really good.  Or possibly contact the hospital social work team?

Others with more insider hospital knowledge may be able to help you with better advice but it's important that you go into this with full confidence that you are getting the best and right treatment.  Public hospital should not equate to substandard treatment.

OMG!

so who is doing your surgery - will the surgeon be back from leave or are you having the surgeon in training?

re chemo - I only had 10 of the planned 12 paclitaxel as the neuropathy suddenly got worse much like yours. Initially I was disappointed but came to realise it was my body’s way of saying it had had enough - and I didn’t want to push it and make things worse and permanent. Chemo finished almost 3 months ago for me and the neuropathy hasn’t gone away but has improved greatly.

Un-f*****g-believable...

Hi everyone.

I've had a good sleep last night thanks to meds,  so I can fill you in on the sucky day I had yesterday, yet again at the hands of my "team". Joking of course. >:)

I arrived 25 minutes early, diary in hand (thanks AllyJay I was laughing on the inside with resting bitch face).
 
As soon as I got to the desk, I recorded my arrival time and weight, told them I had two appts 20 mins apart
Saying that I was concerned as the wait times are always long, I emphasised the importance of the Surgeon appt as I had been waiting since December for that one and I had only briefly met him in an oncology meeting and knew very little about the actual surgery or reconstruction options. 

When I met him it was before all my results were in and before I started chemo in December.  At that time, they thought I had three tumours on my right breast -  I actually only have one, the other ones are a calcification and a breast trauma?
So he was definitely saying a masectomy at that meeting. Which I have come to terms with.

Im really not sure what a "breast trauma" is and I have asked a few times since January and I am still no clearer.  Any ideas?

My appt with the Surgeon was for 10am and the Oncology Registar appt 10.20am. 

At 5 to 10 the Oncology Registrar called me in and again with my diary in hand I recorded the time and re-emphasised that I did not want to miss my appt with the Surgeon, she reassured me that I would be passed over to him after our appointment. 
  
To be fair she was nice but it was my first time meeting her and I had to go over everything again, the amount of AC chemos and how many Pax etc with all the side effects, she felt the breast and said she cannot feel the tumour but could feel a void?Then she left the room and spoke to the Oncologist (the one I rarely see haha) and said he had suspended my chemo, we will go straight to surgery.

After 20 mins I was released to the waiting room where I again asked the Reception if my name had been called while I was in with the Registrar?  No surprises, he's running behind schedule.  So I sat and waited.

At 11.10 am a young lady (never seen her before ) called my name and on the way down the hallway to the rooms introduces herself as a student working with Josh?   I said who the hell is Josh?  He is a Surgeon with training wheels on apparently.  I have no words for my feelings I had, I was rooted to the spot in the hallway, I think they had to help / push me into the room.
I managed to ask where my Surgeon was and was told he was on leave. I stifled a primal scream and instantly started crying , no noise just uncontrollable tears and I couldn't talk, which threw me and both of them. 
When I was finally able to talk again I unleashed my disappointment with my "journey" and the handballing I had received, I feel like I have fallen through the cracks .

FFS I had mentioned to Reception several times who I was to there to see and also the Registrar twice and none of them thought it would be better to tell me my Surgeon was on leave?? Or what about a phone call when he was given leave?

The rest was a blur, I filled in the Pre admsission forms.  He did try to explain the procedure and possible side effects like lymhodema and more surgery may be needed and he mentioned both incision and masectomy so I am clueless.

To be honest, I actually think I was in shock.  They both had a feel and neither could feel the tumour but that does not reassure me, a student and a surgeon in training.
I managed to retain that the surgery will be in 3 - 4 weeks and that they will do the Sentinal Node thing the day before and an ultrasound on the day of surgery to see the size of the tumour and put a needle in it?  Is that right?

I feel like I've been hit by a truck and lying on the road waiting to see what happens.

Sorry for the whinging but I really have no one else who understands.

You go @Nefertari! We've got your back. Disgraceful behaviour. I know they're not doing it deliberately, but the repetition of not taking enough attentive, timely care of you is just NOT ON. Big hug, K xox

AllyJay, I can't stop laughing, so thanks for that, haven't laughed for a while :p  
I have my diary ready with all my complaints, stuffups etc well documented, I just never thought to say it aloud etc hahaha. 
Tuesday is showdown and I'm ready, guess I've been pushed to the brink, I will let everyone know how I get on.
The only place I can say is not worthy of a complaint of any kind is the chemotherapy day unit, excellent staff and no stuff ups!!

Next time ask to see the Patient Representative Officer and put in a formal, written complaint. After being stuffed around, over and over, I took to taking a notebook with me, In full view of the staff, I would say out aloud, "Right...arrived XXX am. When I was weighed and asked the "twenty questions" as I called them, I would again, in front of the nurse, take out my notebook and again say out aloud, "Right...weighed and questioned at XXX time. This I did for each stage of the treatment, up to and including "Port de accessed at XXX. That stopped their shit quick time, as they all knew that I was documenting eeeeeverything and that I was sick of being treated like just another number. I couldn't give a shit if I gained the reputation of being "the difficult patient" I wasn't there to make friends, I was there to be treated for my cancer in a professional, courteous and timely manner, and by God they got the message loud and clear that although I'm only 5' 1"and at that time weighed 49kg soaking wet, and was as bald as a coot, I wasn't to be F**ked with.

Thanks Primek, One of my AC doses was reduced by 15% due to shocking nausea and you are right that was a discussion I had with the Oncologist and I was quite reassured it was okay. 
It just appears that I never see the oncologist, even if my appointment says his name on my appointment card.  I am always shuffled off to the nurse due to him being "over booked".  Sometimes she will go and ask him  a question between patients he is seeing.
Now that the nurse is away sick, I guess I'm panicking because the chemo will be 3 days later and the neuropathy is the same in some areas spreading. 
Once when my Oncology appoint,ment clashed with Australia Day they said instead of the Onc visit, the registrar would see me chairside before my chemo started.
I was there at 9am and sat till 11am while they paged and paged her, they couldn't even start the anti nausea drugs as it was not "authorised" by the Oncologist. 
Eventually they sent the oncology nurse and my treatment started after more than two hours waiting in a chair.  Obviously I have no confidence in the Registrar either.
On one of my Breast appointments to see the doctor ( after 5 biopsys and the portacath insertion),  I arrived 15 mins early and my Dr was calling other patients, who had arrived well after me, I asked the reception several times when I was to be seen as I  was in a three hour parking spot.
They forgot me and the breast clinic closed, all the Doctors had left and I had to see a nurse, who was unfamiliar with my case.
Nearly two hours waiting to see the Doctor for nothing and a mad jog to the car before I got a ticket.  It was a complete waste of time and very frustrating, I had a good old sook on the drive home.  

I can understand your frustration. Sometimes they give a reduced dose which lessens side effects. You should have a review prior chemo with the nyrse to discuss side effects and neuropathy. ..they will call someone to discuss if residual issues prior next dose.