Lived Experience Forum

[Exoplanet]

Well the biopsy had some shocks, I don't mean the results, they won't be ready for a few days. I found out why they called my Daughter, it was to do with telling me about the price. I hadn't even thought of money, the mammogram & scan hadn't cost anything & noone mention fees when they booked me for the biopsy. Obviously that was a over-sight & reception had been told to ring me & let me know how much. My phone number was changed when I got a better internet deal & I hadn't thought of updating that detail with my Doctor. So first shock was nearly $300, I decided to go ahead, you don't get much time to think, but I decided I was there & I just wanted it over & done with. Next was the consent form, which I was told to read through but not sign so I read it. I know they have to cover the worst case scenarios, but it was enough to scare me; as if lining up for biopsy, forget the cancer, just the procedure, isn't scary enough. I actually said something, I said 'perhaps I should wait until I have someone with me', the receptionist asked what I meant? I think what I said was pretty self-explanitory! But I tried to explain a little further that it might be better to have someone to help me get home & that I'd been told I'd be able to drive myself. I'd have to say her tone was cranky & her response was sharp & short - 'you will be' & she handed me forms & told me to sit down. If I wasn't me & when facing another human being my brain won't function properly, I would have been extremely angry with that young lady - where was the gentle understanding needed from a staff member of radiology! That right there will influence my decisions in the future, the cost & the way she treated me. So I go in & the next surprise presents itself. A lovely young lady is preparing me for the procedure, she tells me the details of what happens & that the Doctor will be taking 3 samples . . . I wasn't aware of that & instantly imagined 3 punctures; again I dared to speak & asked if that was the case, she gently reasured me there would be only 1 puncture & the angle would be changed for the samples {I think they only took 2}. Then the Doctor arrives & the next unexpected surprise, even for the lovely assistant, I was getting 2 different biopsys. I don't know the correct medical terms, basically one type for the breast & another type for the node near it. The one for the node, though a much smaller needle, was more unpleasant - but none of it was too bad. Then for the last surprise, this poor lovely assistant had to explain that the price had changed. It seemed noone knew about the node biopsy, it ended up costing nearly $600 - luckily it was pension day, that was over half my fortnightly income. I'd clung to the icepack after the procedure, even though it didn't hurt . . . it was just in case. I had been told there would be a room I could rest in, the reality was being offered a dressing cubicle or the same seats that I had waited on for my scan. I quickly changed my mind, asked if it was ok for me to go, figuring I might as well get as far towards home as I could before the numbness wore off. I'm happy to say there were no after effects, I even pulled in & made an appointment with my Doctor for Saturday {didn't even know she worked on Saturdays, but it was the first appointment available after the results would be ready}. I'm glad that's all over, I think the battle for my right to decide, which has basically already begun with my Daughter & Sister, can now really begin - I don't think I should have to battle, I don't think it's respectful for my circumstances. Nobody else lives my life, I just have to keep in mind I don't live anybody else's life, stand my ground, be as gentle as I can in the hope that that will be what is returned to me. 

[Teej]

Hearing you @Exoplanet . I had lots of shocks reading that post as well. I’m pretty ignorant of those things and assumed the biopsy is covered by Medicare. I’m glad you got through the procedure ok. Really annoyed to read about uncaring and unhelpful attitude but I’m glad the rest were ok. 

I don’t have many words on the last part although I nodded my head in an agreeing fashion. I have lots of feels for you with sister and daughter. 

Just still sitting here with you knowing that things must be feeling difficult and complex. I hope those fur babies of yours are giving you all the physical love. There will be lots of us giving you the virtual love and hugs. 💜🤗

[Sophia1]

Dear @Exoplanet 

I want to make every effort that I can to support you..I will try to read your posts and respond as often as I can

My absence does not signify that I do not care ...Knowing you I do not think that you would think this...

 I hope that you feel supported on the forums by your many friends..

So hard to find words..

Many families have members who are not good with empathy...Instead they often pass judgement to cover their lack of compassion..this further adds to pain especially when you yourself would not treat another in that manner..

They just do not get it...

So that is their issue ...As difficult as it is try not to let their reactions compound what you are already going through..You have you to put first now..

This whole experience has been so painful for you and I understand how distressed and indignant you would be feeling...

Your experience at the radiology centre ..lack of support...costs not explained...indifference is appalling..

I have experienced this myself many times...

I only mention this to reassure you that it is not you....again it is them..

Making a statement about having someone with you was so very admirable in fact...the unable to think out of the square person behind the counter missed the point totally..

Making an appointment to see your doctor ...quick thinking ...this is also a person whom you trust..

I am wondering if you can find an advocate or receive some advice moving forward from the website suggested on a previous post.

Having a platform to talk about your feelings around your examinations as well as experiences with other people in a safe environment might help you release some pent up emotions.

Perhaps even asking how others manage the cold approach around testing and the health system.

Cancer Council 13 11 20 is a free, confidential telephone information and support service run by Cancer Councils in each state and territory. If you have a question about cancer, or if you're seeking emotional or practical support, call 13 11 20 to speak to our specially trained staff.

I have read over what I have written so many times....deleted...started again..over and over..

In the real world...I would be there listening...be with you to let you know that you are still the lovely Exoplanet ...

The physical side has not overtaken who you are...another challenge yes....

You are still the beautiful Exoplanet..

The community here is with you ...💟🌺🐾

[Exoplanet]

@Sophia1   If your on a similar journey to me {I'm thinking further ahead of me} it's so brave of you to want to support me. I'm in awe. As I am with all my supportive friends, I think I'm going to discover that's really quite rare. I guess it's natural to jump ahead as my Daughter, Sister & myself have; I don't get the results until Saturday. I'm kind of hoping the node tests positive, as I think that will give me more freedom of choice. That might sound morbid, but I don't feel morbid. I think I've realized why it upset me so much to hear my situation referred to as suicide. Many, many years ago, decades? I made a decision, not to attempt suicide; instead I chose the hard path - to live. I made that deliberate decision so that my Daughter & those in my life, didn't feel the trauma. I decided to wait for nature to take it's course. I've waited a long time, becoming more & more solitary as time went along. I chose to go solo, because wrong, right or otherwise, every relationship I've ever had has caused me a great amount of stress. It isn't easy living alone & I don't deny I still get lonely, but I've had a better quality of life without all the stress. I want to continue living my stress free life, the way I see it I'm still alive & will remain so until my heart stops beating - I still have to live. 

I think my feelings of 'how dare they' come from having lived, when I haven't really wanted to, for so long already; & now that nature is taking it's course, they want me to enlongate my pain & suffering for as long as possible. I was about to type 'I know' but the fact is I don't, I'm guessing this is all just a natural reaction to shock from different peoples perspectives. I think of all the people that end suddenly, like those in car accidents - who hasn't heard of the road toll? How they don't get a chance to warn anyone & in doing so say goodbye, I care for & love you. I think I'm lucky to get that chance & also a chance to organize things so that might lessen the stress for others as well. 

Anyhow, that's my 2 cents worth for today, I seem to have come to halt with my thoughts. It feels a bit like everything is on freeze pause until Saturday.

Love to all that need or want it 

[outlander]

thinking of you @Exoplanet i havent been through what your going through so cant really imagine the difficulty of it but here for you anyway. sending my love

[Exoplanet]

Love you Claire  @outlander  

[outlander]

Love you too @Exoplanet 💛💛💛💛💛

[Teej]

Hey @Exoplanet . 

I do get what you are talking about. I didn’t want to acknowledge it because I think I feared that it would be crossing a line here and because I selfishly don’t want you to end. The truth is I’ve had times that I’ve prayed for cancer for the way out with less pain for everyone else and more dignity for me. If I ever was in that position I think I may choose something similar although lately my fight for life has been stronger. Anyway I just wanted to say I really understand and respect your thought processes through this. I hope you can continue to live life and take what comes and make those decisions then, as you said much is still very unknown. 

Wishing you all the best. 💜🤗

[Sophia1]

Hello @Exoplanet 

I waited to respond for my head to clear a little..

apart from the normal brain fog I have a virus and as you well know how it  feels.... car issues..ongoing

I have been through the initial shock experience of being told that I had a tumour which due to the size and location was operated on bypassing biopsy..

It turned out to be benign thankfully however needed more repair work and am in rehab stage still.

The tumour was rare and chances were rare...How many times do we hear this.

I still have to have ongoing MRIs

The shock for me on being told that I had a tumour affected a chunk of my life far more than I realised. I think that I have lost about two years of periods of time. Dissociation seems to be my go to place.

I know what you are expressing is very real...thoughts of well this is my time to say goodnight float through my head constantly..still do..

what keeps me going are my husband and two sons..I get what you wrote...

sounds selfish to many and many feel angry when they read these words...I get that too...I get their side as well.

Add on family issues...life experiences...symptoms of unwell minds..

Our minds can automatically take us to this stage..How we deal with those thoughts is what is important...

Work it out ourselves...seek help...reach out and so on.

at the end of the day your thoughts belong to you and nobody has the right to tell you how to think...

you have expressed yourself so articulately ....I feel so clumsy with my words and am treading on eggshells also..

I am a person who functions best with face to face...eye contact...even hand holding or touch...

text messages..emails...chat...virtuality is not my world... I get that it is a great world for many though also..

higgledy piggledy...

in amidst the rubble above are words of love and admiration for you...

you are an inspirer @Exoplanet with your storytelling...your survival techniques...

you are such a strong...brave...loving individual whom I know if I knew you in the real world wherever that is...would love to have you as a friend..

💜🐾🌺

[Shaz51]

sending you lots of hugs @Exoplanet