Fed up

Owww , firstly, welcome to the group that none of us want to join.  You will get lots of help, comfort, advice and support here.  

You have waited a long time and the waiting is the hard part.  Have you been given any advice on 'what operation' you are having, what your treatment is?  You are entitled to know all of this, it is your body and you need to have some kind of faith or trust in the surgeon - I think mentally by meeting them it does help.

You need to find out what your treatment plan is and then take it from there.  To be honest, I can't understand why they have made you wait so long without keeping in touch.

I am sure other Fruit Loops (as we are know, I can't think why ;) will be along to offer their thoughts and suggestions.

In the meantime, take a look thought the rest of the threads and see if there is anything that can help you, plus keep posting on here or on any of the threads.

Sending love and hugs xxx 

Dearest

Lets just hope they decided to get you the Best surgeon. We have to put up with too much waiting and changes , when you arrive at the ward tell them you are very upset about never having met your surgeon , hopefully they will take note of your distress . I know I seen a different oncologist for my last appointment with them and I was so disappointed , he was nice enough but like you I didn’t know him . I don’t think they realise how sensitive we are , we have been to hell and back , several times on this journey . Just not fair .  

Lots of love 

Ruby Rose  

Hi ......I saw a surgeon to talk through the op , never saw him again ......woman did the op , saw her for 5 minutes afterwards ,never again . Saw an oncologist to talk thru chemo and sign forms , never seen her again either. Am seeing 2 oncologists at the moment 

depends on who is available , they work in teams , now I have got my head around this lack of continuity I am ok .......hope you can find someone supportive in your team , perhaps tell them how you feel , they see so many of us , they might not understand how some things matter to us , it is routine to them , have you got a good nurse you can build a relationship with ? Hope you feel better soon , best wishes 

Wow!! that is really rubbish, whats more annoying is the fact you can't even ring to ask if you can have a meeting with your surgeon before hand. Do you actually know what they are doing?? I have had 2 lumpectomies and a mastectomy and i know on each occasion one of my surgeons registras came and talked to me to make sure i knew what was happening. Before my mastectomy my surgeon/consultant came and spoke to me.

What i will say is try to have faith in what they do, it is their job and they do these things every day. Also if you get there on the day and have any doubts then say you aren't happy and want the op postponing until you know whats happening. 

After reading this i feel so lucky, from the start my consultant who is also my surgeon is the only person i have seen he draws lots of pictures to explain whats happening and always given me the last word on what is done.

You do not have to just go along with whatever they have decided, although they will have decided on whats best for you, you need to know whats happening so you know what to expect after your surgery.

Like i said before i have had lumpectomies and a mastectomy so if you want to know anything please give me a shout. Or even if you just need a chat.

Big Hugs for you, you can do this xxx

Dear

Wishing you well for tomorrow , hope your operation goes well and you get back home soon . 

Love Ruby  

All went well. Wake up in recovery feeling knackered. Had a good few hours sleep and feeling better now. Surgery finished late so I was not able to speak to the surgeon. Hopefully sometime in the morning. Can’t wait to get home.

Peace ️

Hi JRF . 

Glad that your op is done!  Sleep always helps doesn’t it ! 

A few tips which have helped me along the way on this journey.

• Ask the Breast Care Team or your Breast Care Nurse, or Receptionist at Oncology Centre ( or all of them)  for a list/ pamphlet of all the different Oncologists, Registrars,   Nurses Medics ( Breast Care Multi Team), so you know who everyone is. If they give you an old one,  as I had recently with crossings out. Ask them to write in the replacements.

• Find our the names of the Oncologists’ secretaries and their direct phone numbers and emails. That way you can request information via them,   eg copies of reports, Q’s regarding treatment in between appointments etc.

• Have the work email/ work mobile contact for your Breast Care Nurse and copy into emails to Oncologist’s Secretary ( so everyone is kept up to date with what’s happening)

• See if appointment reminders can be sent to your phone via text/ email some hospitals / Oncology Centres do this. 

Judith xx

Hi   ps 

If your breast care nurse isn’t very helpful. Ask to be referred at reception desk to another one? They are paid to support patients. 

Maybe ask who is popular?/ see / meet  will be on your side/ someone you can be yourself with/ can speak to.

The first BC Nurse I saw ( when in shock from initial diagnosis) wanted to know how I would break the news to people at work ?!!!?** The last thing on my mind at that point. She even argued with me about my work ( I could not believe it..).

The second BC Nurse worked part time and “ did not read work emails”. 

The third BC Nurse, was so supportive and lovely and was totally there for me, and more importantly listened to my feelings etc. 

Judith xx

Jmp...2 great and useful posts .....hope you feel ok ( ish ) today ....keep going !  X

Jump, sending you love and hugs xxx