I started off strong, now I'm confused, puzzled and feeling very lonely. Think a good cry would help but scared to start

Hi Marie 

Did you not receive a letter after each appointment, confirming what had been discussed . I think sometimes at appointments we don’t digest everything we are told . 
Do you have anyone that could go with you to your next appointment. 
Maybe write your worries down with questions you would like answers too. 
sorry not much help . Try to rest and get a good nights sleep . 

Hello Marie!  I wish some Doctors would realise patients over analysis every word they see.  I was 50 diagnosed with early BC in one breast and I know I'll only every be " no evidence of disease" and as I only had surgery and radiotherapy of affected breast the other side at risk as is a recurrence or new cancer in affected breast.  I've just had to accept this but if you click my name you'll see what's happened to me in last 7 years.  Im still a NEDDY (no evidence of disease) though.

Im surprised you can't see your BC nurse for a chat.  Maybe ring the MacMillan help line for advice .  

My grandmother had BC age 70 in 1971.   She had radical mastectomy followed by radiotherapy.  4 years later in other breast.  Same treatment.  There was no drug treatment then.  In her mid to late 80s  they had detected a recurrence but they said given her age they did not recommend treatment as they said it was slower growing as she was considered elderly and she wasn't ill with it and quality of life important.   She passed away age 90 .   

Hello Marie. I feel for you as diagnosis is bad enough without the fear of a return. I would strongly advise you find a C group in your area to join as a face to face with like minded people is brilliant!  They talk but don’t dwell, laugh but don’t belittle, weep but stay as strong as possible. Do as others say and write down what you want to asksurgeon/oncologist. DONT Google!! Sending loads of love and support. You are NOT alone️

Hi Marie; I'm sorry the surgeon you saw pulled the rug from under you - I think they sometimes forget that what is day-to-day stuff for them is big and scary for all the rest of us.  Perhaps you could ring your breast care nurse for some advice and support; I haven't seen mine either, but she has been on the end of the phone.  I'd call the oncologist too for his advice.  It's hard to stop the mind going over and over conversations when you're trying to sleep; I've found that listening to the radio in the wee small hours provides some distraction (although the World Service has some pretty weird stuff on at that time in the morning...) I really hope you feel better soon and that you can get your positivity back.

Best wishes.

I was advised after my biopsy to have someone with me at consultations and I did this always.   I listen very carefully, ask questions and ask again if not sure.   I am normally very confident as have been on my own for 35 years since losing my lovely husband.    When the Oncologist advised me to stop Exemestate if side effects developed, I asked him did I have to let him know.   He said I did not have to let him know, and he would not be recommending further medication.    I have full confidence in him, and made sure I was sure of what he had told me, by asking the nurse who attended the appointment with me if my understanding was correct.  I do not receive copies of letters from Oncologist.

I truly regret contacting breast care nurses about my late effects of radiotherapy as it has caused me nothing but worry and in future I will ask questions elsewhere.   I dont  Google ever and tell all my young friends NOT to use it for any medical questions.   

Until recently I had a great source of comfort and information at the local Maggies Centre and it made my week when I had my Nordic Walking Group every Wednesday.   Sadly it costs £60 plus for a return taxi journey and I can't afford this.   Public transport is possible with difficulty right now but hoping I will be able to use it eventually. My friend who took me to Maggies was a friend and taxi driver so I got reduced rates from him, but he has retired.  

Thank you so much for your kind words, love and support.  Right now it means the world to me and I am having a much better day today - sorted out the bird feeders, had a nice walk, and cooking a casserole of chicken with lots of veg right now.

Thank you for response.   After advice from nurse after my biopsy I always had a friend with me, but did not think to take anyone along to see the Surgeon recently - big lesson to me - never again attend any consultation alone!  I am usually confident and ask questions and if not satisfied with first reply, I ask again.   Not so this time around as the reaction of the consultant surgeon took my breath away, firstly when he asked me had I not been told that my breast cancer was the most aggressive form - I was able to tell him that Yes, I was told.    Then when he became even more animated when I answered his question about what medication I was taking - none - he became even more animated and asked me did I not know I was now Very High Risk of getting cancer again....   I was totally speechless by this time and glad when the meeting ended.   I still don't know the answer to the question of being very high risk as my young GP did not know the answer to my question to her which was "Because I had very aggressive breast cancer, does this automatically mean I am now very high risk of getting cancer again?"   If the answer is "YES" it wont trouble me unduly - I would really just like very much to know my situation.

Thank you for your advice - I did manage to have a good rest last night, and took advantage of the extra hour with the clocks changing.    Today because of the help through Macmillan once again, I know I am not alone.