Lived Experience Forum

[Mazarita]

Are you okay, @Former-Member? 

[Former-Member]

@Mazarita

I have had a day of shock basically..

I have had mixed conversations with husband who is now in bed

I had appointment with cardiologist whom relayed alost perfect heart..

then said other discovery from ctca.

tumour in nerve endings of thoracic a of spine.ell..shock

for me this is overload

to be told to make urgent appointment with neurologist

well seem to be non existent

Rang my normal gp clinic even though urgent told following week booked out..

after many calls to cardiologist?perspective neurologist apparently neurosurgeon 

got urgent appointment on Monday and reassurance from a very young girl do not freak out.. He is the best

how do I feel ?I pay exorbitant amount for private health insurance..

who followed up.. Who investigated? I did 

fortunately I looked at hospitals and went backwards and encountered a lovely young girl who realised the urgency and booked an appointment for me on Monday?..the tumour is large..

I then had to face the hardest point getting an appointment for a referral even though I expressed that Ctca results were there..

well that leads us back to what a crummy medical system we have?none of these people are aware that I currently suffer severe symptoms of mental illness..

[Mazarita]

@Former-Member, I'm in shock with you to hear this news. I will take a moment to collect my thoughts and write more. For now, know that I am here and will stay with you for at least an hour should you not be able to sleep and want to keep talking. I know it's an inadequate response to what you are saying, but I am mentally sending you hugs.

[Former-Member]

I was just about to apologise. Last thing you needed to hear.

haha last thing I needed

I did get closer connection with twin whom is waiting for results of bone marrow tissue and blood tests results as well as biopsy of bone marrow

we are holding back telling our mum 91 even though we have made pact to tell everything..when spoke to her yesterday she told me that her friend next door..same age died yesterday morning because she did not want to be around...mum said she totally understood..

[Mazarita]

@Former-Member, your shock is natural. It is overload to get news like this for anyone, let alone someone as sensitive as you, and with mental health issues. I find it appalling that your cardiologist left you to do all the follow up yourself, having just received this frightening news. Especially given that you are unable to see your GP immediately, who would normally be the one to handle referrals and follow up. How appalling too that your GP was not immediately available for such an emergency. 

You have done exceptionally well under these awful circumstances getting the appointment with a neurologist/neurosurgeon on Monday. Please take that young secretaries advice as much as possible and find some relief if possible in the knowledge that this doctor sounds like one of the best.

So you may be in hospital on Monday too, it seems. Again, the failure of the doctors to be available to provide referral is such very poor treatment. 

The overall sense of what I am saying is that, yes, the doctors leaving you so much on your own resources is bad treatment. But you have done an outstanding job of caring for yourself by getting the appointments on Monday. 

[Mazarita]

@Former-Member, no apologies. I simply feel for you going through this now. 

It seems wise to hold back telling your mum for now.

How sad that she feels that way about life. She may be grieving her friend and feeling lower than usual?

I'm sure it's not easy being 91.

[Former-Member]

Thank you so much @Mazarita

@my twin has gone through same scenario with her issue which has more implications..

basically I do not care about me..which is devastating for my sons even though one is I reachable .. My husband .. A widower when I met him ..Despite his greedy offspring does not deserve this..  I am very connected with nature and spirituality and feel that this is my time..please do not take this the wrong way..I trust you and feel that yourself and @eth will understand

I do not want treatment..I have seen what it did to my twin and many friend whom I have lost..

I am so happy that I reconnected with you..

I have been lost on the forums ..people upset by my honesty..

so thank you so much

[Mazarita]

@Former-Member, I respect your feeling that this may be your time.

But I did just read something about this and it seems such a tumour can be malignant in some cases, more commonly benign. Do you have any physical symptoms that you feel relate to it?

[Mazarita]

Just to add to my last message, @Former-Member, I suppose my voice or reason always overrides my own feelings of connection to nature and spirituality. And I look for best possible outcomes as much as I can.

There's no doubt this is a serious issue. But I want to just insert a small opening to the possibility that this is not the end. 

Having said that, I have contemplated my own mortality a lot in my life and think it's good to be accepting of it as part of life.

I too am happy to reconnect with you. Thank you for being here.

p.s. this is one of the articles I read:

http://columbiaspine.org/condition/schwannoma

It seems to be a reliable source, but may not be the condition you have.

 EDIT: I see that you are offline now, @Former-Member. I hope you get some gentle sleep tonight now. I will try for the same. 

[Former-Member]

Thank goodness for you..

it appears that I do not rate attention from a moderator