I'm not impressed!
TL;DR - If you are a patient at public hospital in Brisbane, check your mammogram & ultrasound appointments. They may no longer be there. I had my second year mammogram and ultrasound today. It sounds so simple! I was diagnosed in late February 2018 by (private breast clinic) and referred immediately by my GP to a public hospital as they have a great reputation for dealing with breast cancer. And at the time, yes, they were fantastic. I was seen within about 2 weeks (on a Monday) and a week later I was admitted and have my lumpectomy on the next Monday. Wonderful! Public system at its finest! Nasty tumour ripped out, sentinel node biopsied. All good. I was assigned a breast care nurse (2 actually who job shared) and had follow ups with the surgeon and visited the Breast and Endocrine Clinic as required. Fantastic! Delays to appointment times but meh, it is what it is. No complaints. In March 2019 I had my first annual check up. Queried the technician about getting a 3D mammogram. Apparently the machine has the capability of doing this but no one was prepared to pay for the licence to activate it and turn it on. Had an ultrasound - technician noted a couple of cysts but nothing concerning. Had the follow up appointment for test results at the BE Clinic. Saw a random doctor who claimed to be some kind of breast specialist. I was also told I'd never see my surgeon again. She said the report was all clear. Yay! Great news! However, when I specifically asked about cysts, she said oh no, there aren't any. Hmmm suspicions raised. I asked about breast density. She couldn't give me a definitive answer. I asked what stage was my cancer (knowing it was Grade 3 but not stage). Oh, the response was, we don't use stages any more. Uh really??? Totally forgot at the time to ask for a copy of the report. When I followed up about a week later, breast care nurses said, not our problem. Email these people. So I dutifully emailed my request and heard nothing. And still heard nothing. Followed up 2 weeks later to be told they had never received the original request. <cough bulls*t> Eventually got the report and it was a drawing with some scribbles on it. Not exactly a professional document. So 2 days ago, I was mentally prepping for my exam this year and received a phone call from Qld XRay at 5 pm the day before my exam saying they are going to schedule my annual appointment. WTF? Apparently the public hospital have outsourced their mammograms and ultrasounds to Qld XRay and did this in November 2019 and obviously didn't tell anyone. Qld XRay also thought my appointment was 4 April and not 4 March. I told her, no no no, it's definitely 4 March and I'm holding the appointment letter in my hands right now. Of course, no availability on 4 March so I was rescheduled to 5 March. Not too bad, just one day delay. I can cope. But how furious I would have been if I'd turned up at the public hospital to find out it had been cancelled with no notice. Thank goodness I did get the phone call. So today I rock up to Qld XRay and I am very impressed that the first thing they do is give me a 3D mammogram. No mucking around with old 2D stuff. Excellent!! Ultrasound very thorough and I'm totally on board with the lovely staff. And the best thing is you have access to a Qld XRay online portal and can see your images within a few hours! No report thought until you've seen a doctor, then it becomes available. Anyway, they contacted the public hospital to get copies of last year's scans and results and hospital promptly tells them that they have no record of me. That there are no scans or results in their system. Are you #(*&ing kidding me? This after receiving a text message today reminding me of my follow up appointment at the hospital for next Monday. So Qld XRay has had to send off requests on my behalf to private breast Clinic and Breast Screen Qld (where I had a couple of scans done about 6-7 years ago) to try and source comparison scans. All of which is going to delay my report getting to my various doctors. So the public hospital - not good enough!!! Not happy at all. I don't know what's happened there over the last 1-2 years but something's not right internally. I shall be very interested to see what happens at my appointment at the BE Clinic next Monday. Sorry for this long and ranting post but I just had to vent. We rely on this stuff to go smoothly.
Anniversary
Today is the first anniversary of my mammogram. I was pretty stony faced. Nine months before my sister had died from breast cancer and I was resentful of the inefficiency at the front desk, the pink positivity messages and images plastered everywhere, and the long wait, despite the fact I had an appointment. I was asked if I wanted to take part in a study comparing detection results between 2D and 3D mammograms. I'd be randomly assigned. Always happy to be part of a medical study I said yes. I got 2D. It was a shabby shabby building, not a nice environment. The woman doing the mammogram was professional. Serious, but pleasant enough. She made small talk about kids, mine, hers. I get it, but I really didn't want to talk. I just wanted it over and done with, to get the hell out of that dingy place. The mammogram was uncomfortable but no more than that. As I was getting dressed she said sorry, I just need to do one more. Why? The image is a bit blurred, it's not unusual, the plates might have shifted slightly. Bra off and back I went. After it was all done she wished me good luck. Why? With the teenagers she said. Oh yes, you too. I left, recovered my mood and congratulated myself on getting it done, how efficient and good I am. Virtuous even... The boob she re-imaged (blurred image my foot) was the right one with the tumour in it, and three weeks later I knew what the good luck wishes meant. It's weird how the anniversaries of trauma are unsettling. I mean, time is a manmade construct and it's just another day determined by how long our planet takes to travel round the sun, right? I mentioned it to the psych on Thursday and she said the memories trigger our nervous systems to 'remember' as well, and we physically relive our response. I don't have trauma round that mammogram, but three weeks from now I won't be able to say 'this time last year I was happy' etc. My naive innocence was about to end and as I approach that time I am feeling unsettled by it. I theory my life is better now. I'm certainly healthier with, as far as I'm aware, a body free of cancer. However in fact, I'm sadder, sorer, mutilated, diminished and more tired. It's difficult to feel it's a victory. I hope the second anniversaries are better than the first ones. How are your anniversaries?
Trying to cope day to day
the past few weeks have been a true roller coaster for me. I have found in the past few days, my emotions have hit a low with crying, a sense of anger at the unknown of what lays ahead and last night was particularly bad - I told my husband that I was truly afraid that I might not survive and what if this period of time was all I had to enjoy? I have surgery next week and as much as the medical team have given positivity - there is an element of fear which comes from the fact "a bloody lump is growing in me!" I know they will cut it out but who is to say it wont come back or turn up somewhere else that is not visible? My emotions are on hyper drive and I do feel incredibly lonely even with my family doing everything in their power to support me. There is almost a "need" to be positive for them and myself but some days I am so damn tired from doing so. Illogical I know and it is ok to say "Im not doing so well today". for the first time since I was told "It is Breast Cancer" - where my response was to go into "fight mode" and literally almost pretend it was merely a bump in my life. I woke up from a sound sleep - yelling "I have Cancer!" over and over. Then broke into a hysterical bout of crying, sobbing and quietly screaming as it hit me - I have bloody awful frightening Cancer. It is not a bump in my life - this bloody thing growing in me has the capacity to change everything. Some days, I think to myself - I will beat this into submission and the power of positivity thrives but in the quiet of night - a multitude of images and emotions hit me like a ton of bricks and I end up weeping. The pain radiating from the damn lump that has grown dramatically due to its aggressive behaviour is like an endless ache and as much as I know it is "part and parcel" of the cancer - is a constant reminder that this nasty little visitor in my body has taken some of my control. I am sorry this is a long chain of thoughts. I just needed to let it out somewhere. Lois.
Can't Find My Post
I hope someone can help me. Yesterday I started a discussion & I can't find it. It comes up here: Choosing breast reconstruction This private group is a place for women to connect, help make decisions & share their experiences of breast reconstruction through words and pi… 1,112 discussions1,221 membersMost recent discussion: Still Can't Accept Itby PaulaNMay 7 When I click on it here I get Permission Problem You don't have permission to do that. Can anyone help me ??? Paula