Adjusting to bad news, staying hopeful, changing habits

It was good to see the breast surgeons for second and then third opinions. Everyone concurs that I do have IBC however I also have a big lump/tumour and my breast does not look at all like what IBC looks like on the internet. Which is why I had doubted it. Wish someone had told me earlier! I was left quite confused by the fact that their opinions about my course of treatment were actually conflicting and opposite. Perhaps sometimes there can be too many cooks!

Hoping today's appointment was helpful.

Enjoy your break away

Hey @Kabash.  Getting things rolling along and second or third opinions give you confidence that all the powers that be all agree. It is quite amazing how life can change so rapidly.  There are always things to be thankful for but sometimes they get clouded with the fog of doom and that's ok. You just have to keep looking for the good bits no matter how small, hang on to them and build on them.
The after math is a tricky beast as well.  Sometimes what things look like to others on the outside are not really what's going on inside.  Survivorship is a continuous work in progress.  The highs can be sky high and make you feel like you are so strong and can take on anything.  The lows can just knock the wind right out of sails and you feel like you're drowning again.  Look after yourself and soon you will be on the other side.  Do what you need to do to get through.

xoxoxoxo 

@kabash We all have to do what we need to get through BC, so please don't apologise for length of post, or seeing more than one or two doctors! Whatever helps is entirely necessary. You do you.

I too get attacks of the green monster from time to time. People who have an easier time of it, who look like they've got the answers, people who are happy in survivorship. It's very human and it always passes. The best antidote is to count your blessings, do some gratitude. Be kind and gentle to you! Being human is difficult, cut yourself some slack. You're a human going through a cancer diagnosis... it's bloody tough.

Biggest of hugs, K xox

@kabash It's good that you're moving forward with your treatment.  It is amazing how much that helps.  Sometimes writing things down can be quite cathartic and I think it helps for other newbies to see that they're not alone.  I started a blog when I first began treatment which was mainly to update friends and family but it became a way of getting my thoughts out and now is a journal of the year of treatment.  Take care.

Thanks again for the sweetness @Anne65 yes it has been tough but am doing okay considering everything, particularly as I finally got seem Herceptin and Perjeta into me today. Yay! After running around on Friday to get all of my reports and films and scan disks and referrals together in one big show bag I was told by the receptionist of the specialist I had hoped to see that she probably wouldn't be able to see me, given that I had already seen two specialists (maybe she thought I was doctor shopping). I was deflated by this as I had been given hope that she would if I did the necessary run around. So I went and bought myself a wig to try to cheer myself up, and it kind of did, although I did feel a bit ripped off! Wigs are expensive! When I saw the price tag on a human hair one was over 3 grand I had to say thats not in my price range ( and is kind of against my values of not exploiting other human beings) show me the synthetic options! I wound up spending $500. But it did make me feel a bit more pretty now that I have a bald patchy head.

Early this week I tried the surgeon's office again, and when I got an answer phone and no call back I decided to try to get an appointment with my original surgeon, as she seemed very good too when I met her but maybe is not as in demand or renowned. I was lucky to see her again the next day and she confirmed that my presentation was inflammatory when she first examined me, and she seemed surprised that I had only just learnt this. I don't remember her saying that to me when we first met, however truly it was a whirlwind and maybe I was not taking notes or taking everything in. However she also gave me the impression that this should not be as bad as I had thought in terms of how it changes my prognosis or that the delay in getting me on a better treatment for my particular cancer would alter that. We had a good talk and I came out feeling much better. Funnily when I went to collect all my films and MRIs and reports etc from the other surgeon's office, I was offered an appointment, which I accepted, so I will be seeing her in the morning now for a third opinion before I head off a a brief 5 night holiday between chemo sessions (weekly now). Maybe it is overkill but I'd like to meet her to get a sense that my treatment plan is appropriate or hear her ideas/thoughts. I'd like to get a sense of who I would like to do my surgery as by the time surgery becomes an option for me I may also have private insurance. However I understand costs would be high.

I am renting a house in the country near our farm that I took last school holidays when I had some signs of cancer that I mistook for mastitis. The woman who rented me the house was undergoing cancer treatment and we have bonded a little bit more now that she knows I am going through the same. What a change in all of our lives from one school holiday to the next! Strangely lots of good things have also happened and I have never felt so loved and cared for by so many people, particularly my immediate family but also my friends. It also makes estrangement from members of my husbands family a little bit harder to take. However I only want good and positive people with decent values in my life and sometimes people's absence can also be a good thing.

I know I write very long posts on this thread and am kind of using it like a journal of my journey. Brevity is sometimes not my strength!

I am very grateful for all of the love and support I have been shown here and to have this forum to learn about other's experiences and feel supported in my own difficult journey. Sometimes I must admit I feel a little bit jealous of women who have had an easier journey, who caught their cancers early, had lumpectomies and got chemo to be on the safe side once it was all removed, and are now survivors. Knowing how rare and advanced my cancer is and that I have to accept it being there and being big and being in the dermal layers and being a bit extra threatening can make me feel a bit sorry for myself in some bad moments. However I know that whatever stage cancer is caught at, it is hard to take, that even when it is gone it can be a source of anxiety, and I know that many others have gotten through similar stuff to what I have been going through and are going through even worse, including living with metastatic disease, so I also have to count my blessings.

Love and care and prayers for recovery and no recurrence to you all. For those of you who are living with advanced disease I salute you and pray that advances are made that can give you hope for a cure as well.

@kabash You poor thing. You have had a hell of a time. So sorry you have had such a mountain of pain but it sounds like you have had some positive news & are making progress. Small steps! Good luck seeing another surgeon & getting another opinion. In the end we all have to take charge & look after ourselves & if we are not happy or need to seek further options, then we should go for it! Take care & be kind to yourself. Its hard but try to focus on what is going right & the positive steps you have made. You will get there & we will help you. love & hugs xx

WONDERFUL that you're application for Perjeta has been approved!  WOOHOO!!   Celebrations galore!  That take so much stress & pressure off you and the family.

I’m very happy today. Early in the day I was complaining to the breast care nurse that I wasn’t comfortable finding out what I would be getting next Wednesday at the oncology review meeting before treatment. 

I asked if I could get a call if either drug is approved. In the afternoon she called me again to let me know that the Perjeta application to the drug company on compassionate grounds has been approved and the Herceptin is almost certain to be approved by Medicare too. So I will be getting the good chemo from next Wednesday. Yay! I feel better already. 

I am am going to see another breast surgeon just to get a second opinion on everything, and if I feel much better about her (apparently she is the best) I might consider getting the surgery done privately down the track. I doubt it but I really just want someone else to confirm that I really do have an inflammatory cancer as I’m not entirely convinced and to make sure she thinks my treatment plan is good for my particular cancer. 

Well done @kabash. You sound brighter today. I'm glad you're finding the Paclitaxel a bit easier so far. Onwards and upwards. K xox