Bilateral axillary clearance - advice sought

Thank you Zoffiel - I think you are correct- a positive attitude is what others want to hear and may not necessarily be the case. I am pissed off, sad,incredibly scared and miss my old life. 
Dandelion - thank you for sharing your thoughts. I hope that you find a Psychologist that can help you navigate this crazy world that we've been thrown into. 
Paula and Jane- thank you for throwing some light on what I thought was all doom with regards to the lymphoema. It is mild- so hopefully it can be managed and the 24/7 wearing of garments will be relaxed a bit.
Fairy dust - great advice- just booked tickets to see Ed Sheeran next march with my daughter. Will endeavour to plan some more.  :)
Brenda - good to hear that your treatment is completed. Sounds like you have had a rough trot. Thank you for taking the time to talk to me. 
Twiggyjumps- you too have a way to go. I didn't have a PET scan - I was told that it wasn't indicated/necessary. Questioning this now??? I like your sentiment of holding cyberhands.
Thank you to all. I feel less alone. xxxx

The plan for me is chemo x 5 then radiation x 25 times, then mastectomy on right breast but I'm volunteering a bilateral with reco & died fland their doing an auxiliary with diep flap:( During the breast screen recall for diagnosis I had another mammogram, ultrasound then a biopsy all done in half a day. The next week I got the bc news. I was devastated! Then I had a sentinel node biopsy prior to any planned surgery and guess what, there was a 4cm bastard in one out of the 4 the doctor extracted that wasn't reported. PET scan later showed fine everywhere else, but the report from the radiography from breast screen said nothing in lymph nodes were detected. But I was impressed with the efficiency of BS all the same. So neoadjuvant is the plan they've decided for me. So many on here are 49 like me. Let's hold 'cyberhands' and keep smiling Xxx

You have a ways to go in treatment yet and I get you, its like living in the twilight zone where you want to have it over and get back to normal but you can't. Just do your best to enjoy yourself and get plenty of rest as your body does need it. I finished chemo 13 months ago and am just decreasing my 14 hours sleep to 9 or 10 now. Yep I sleep that much still! Be prepared for odd other things to happen too as your immunity will be low for months. One of the odd things I got was 3 months of bronchitis, an infected hair follicle down in my girly area which needed antibiotics to fix it, lymphedema which is thankfully much better behaved now and a blockage in a vein behind my eye which is thankfully also getting better but at the time I had terrible fears and depression. Keep on clawing your way up out of the rabbit hole and eventually it won't be such a big effort to enjoy life.

@Deb P stop being so hard on yourself. The stuff you have gone through has been hard. Whether you are positive or negative in my humble opinion has very little effect. I have the bracken 2 gene I was born with it I then got breast cancer. So even if I was Miss Sunshine I could not stop my genetic make up. Of course you worry about a recurrence thats normal. You are doing everything possible. Following treatment seeking help to cope more positively. Good on you. Give yourself a pat on the back and give your daughter a hug. 
Focus on what trip or outing you and your daughter could take to celebrate. The zoo, afternoon tea at fancy hotel, tickets to a musical/concert. See what you can do that make happy memories live in the now not what if!

I so struggled with the this is your life, wearing a garment 24/7. The reality is as Jane said if your Lymphedema is mild there will be times you don't epwear it. I did get to a point where I didn't wear it at work (which was my biggest huddle as I'm a nurse). However after a small op last year it flared up again. I now wear it again at work (a special one that I can get the hand off quickly, and to be honest whilst at work the hand is often in my pocket.) when not at work I am luck and can get by with a custom short (to the elbow) one as my problem was lower wrist and hand. I am pretty good at massaging daily and find that really helps. If I go out somewhere special I don't wear my garment. I never sleep in my garment. Once all treatment finishes and things settle. Hopefully the lymphedema will too and you can have short breaks from the garment.... As for positive, pfft. Have a whinge when you need. 
Hugs. 
Paula xxx

Hi @"Deb P", you might not need to wear the garments all the time for the rest of your life if the lymphoedema is very mild.

I didn't have to wear the compression garments 24/7 until very recently (so several years of self-massage, physio massage when I felt I needed it and wearing the sleeve from time to time kept things in check as the lymphoedema was quite mild) but a bad fall in September last year where I broke my other arm and bruised my ribs resulted in me not being able to do the self-massage properly and the lymphatic fluid built up around my ribs / core as well so it has taken a while to get things back to (almost) normal. My physio has said that now things are better and currently stabilised I can take small breaks from wearing the garments, especially as the weather is much cooler and so my arm tends not to flare up everyday now. Also, if I'm going out somewhere nice I may not wear the sleeve if my arm is looking / feeling reasonable. Much as I hate wearing the garments they are the most effective part of the treatment regime once you've got the right fitting ones.

If your physio has taken measurements you can easily monitor how things are going and it may be that your physio will let you ease off a bit once they know how the garments and other treatment options (i.e massage / over-bandaging / laser etc) are working for you but they will be the best ones to advise you about your particular situation. 

Btw, we banned the "p" word from our household as the whole "just be positive" thing was enough to make me positively murderous! xx

Hi @"Deb P", they call me strong , brave and that I'm almost there !!! I feel like screaming at everyone. I'm over it and had enough. I don't sleep well and am spoked in my sleep . I was dx with multi lobular in dec had the mastectomy and had one node positive so went back for the axillary clearance after that is when it all hit me and makes me feel so afraid and fixated with my % of recurrence. I'm at Day 23 radiation artificial menopause from monthly injections . My 15 yr old is coping really well now , I'm not but I'm hoping the normal will come back after I have the final reconstruction in 6months . Iv made my appointment to get a referral to see a psychologist. 
@Zoffiel, I love what you wrote , 'cranky pessimistic survivors' hehe let's get pist off with cancer

The psychologist is a good plan, just remember that you may have to test drive a couple before you find one you click with. It's a pretty personal relationship and you need to be comfortable.

You know, I've never been that convinced that being positive is all its cracked up to be. I remember whinging to my Mum about one particular patient when I was a student nurse (back in the dark ages when you trained in a hospital) and she told me "Difficult patients live longer." I don't know if that is true or if it just feels like it. I left nursing many years ago but I know a lot of cranky pessimistic survivors and I've seen rays of light perish far too early.

 Honestly, I think being positive makes life a shit load easier for everyone around you, but as for prolonging your life or helping keep you safe, meh, maybe--maybe not. There's a difference between being pessimistic, or as I prefer to see it, realistic, and being stressed. I know others will argue, but the whole "Be positive" palaver is right up there with "You're strong, you can beat this." on the list of things I don't need to hear.

A few of us are watching some info about a possible drug treatment for lymphoedema with great interest. Let's direct possitive thoughts towards the sort of science that may get us out of this mess. You will stop crying. Eventually you just run out of snot ...

Thank you for your wise words ladies. I hope that this sense of drowning passes soon. My friends tell me that I am brave, courageous and strong - the reality is I can't stop crying. I did think that I was going well given the circumstances- but maybe too well. Everything happened so quickly- I didn't really have time to process anything. The lymphedema has opened the flood gates and I don't know how to close them. I have been told that I will have to wear compression garments 24/7 lifelong. Have you ladies found this to be the case?
I have a 13 year old daughter. My greatest fear is that I won't be around to see her grow up. I lost my Dad at the age of 14. In the last two weeks I have struggled to think about a life after treatment. My Oncologist told me to walk out of his office with two words in my mind- treatable and curable. So why am I worrying about the recurrence risk (told it was 40%) when it may never happen? I don't want to live my life in fear. I am a Nurse who has worked in Oncology. I am aware that a positive attitude plays such an important role - I thought I had it in the bag. I am seeing a Psychologist in a few days- hopefully she will help me to get back on track

It is a long road but you will settle into the rhythm of it. I found the weekly taxol really hard going but once through that even though on herceptin I started to feel better. I got some lymphedema under the arm and breast area whilst on chemo but after chemo completed laser treatment settled it and it has been good since. Travelling can trigger issues so lifting my arm up regularly seemed to make a huge difference. I hope it's the same for you. It's hard going all the treatment and now complications, you have every reason to feel teary and upset. (I had a meltdown when my portacath was put in as it was an ugly scar and felt it undid all the good work done by my breast surgeon ...no tears after the mastectomy and recon...go figure)

Keep talking about things. It helps. Kath x