Spinal Cord Tumour

[SybsCairns]

Good Morning to all the Nightowls

I am Sybille in Cairns, Far North Queensland and love living here

So a month ago (21 August 2020) I was diagnosed with a spinal cord tumour, which is located right at the junction of the brain stem and the spinal cord. In conference with the surgeon and other doctors in Townsville  the risk of surgery was explained to me very clearly, thank you, I love straight talk! As the risks of performing a biopsy were only marginally less, I decided against  both surgery and biopsy, and came home to Cairns on 11 September.

On 28 September (coming Monday) I will be meeting up with my relatively new GP and a specialist palliative care nurse to come up with a care plan, and get a referral to the Cairns Hospital Palliative Care and Oncology Units.

So I am sitting here, having my first breakfast so that the first bath of meds stay down the hatch, and thinking that maybe it's actually possible to have chemo without having had a biopsy? I definitely have to put this on my lost of questions.

Anyway, that's were I am at at the moment. Good headspace, good friends, eating well, and just taking things one step at a time.

[sch]

Hi,

I'm sorry to hear about the tumour. Yes, that sounds like a nasty place for a tumour. 

I hope your appointments are going well.

How did the meeting go?

How are you?

Were you able to have chemo without having the biopsy?

-s

[SybsCairns]

Hi sch - thanks for "dropping in" on a Sunday!

well, it looks as if, after another stay at Cairns Hospital, the pain seems to be sorted out.

still waiting for my appointment on 16 October to actually meet face to face with the Palliative Care team!  And I have a person from My Age Care come in on 19 October for an assessment.

My friend / neighbour is now officially my carer with a carer ID which is really cool.

In the meantime I have also done my Advance Health Directive, which is sooo important to have in place (witnessed by a JP) for any future treatments or non-treatment, giving us patients the choice as well as knowing that our instructions will hopefully be followed

There seem to be new symptoms almost on a daily basis, which keeps me on my toes!

about your question: Were you able to have chemo without having the biopsy?

I hope / guess that will get sorted out when I have the face to face meeting on 16 October.

gosh, it's quite a long reply - I guess as I am typing more and more things spring to mind.

anyway, that's it for today - say hello any time you feel

Sybs

[sch]

Hi Sybs,

Sounds like you've spent a lot of time thinking about this (as you do).

How did your face to face meeting go?

I hope it all went as you were hoping.

Long replies are good. I think we all enjoy hearing about how others are going.

-s