An update

 Home with my boys

Home with my boys

I am just writing to update everyone.

It has been so nice not being in hospital two whole days! My fingers and toes are staying crossed that I can remain out for at least a few weeks – I say at least a few weeks because there is a chance that I will be having a surgery to have a permanent device implanted to help with pain.

I am still struggling to control my pain and fluid is building up again. Hopefully this can all be handled as an outpatient this week.

I am in hospital on Tuesday having treatment. Any slither of hope falls on this treatment shrinking my tumor and fast. Then, on Wednesday, I am tentatively booked to have a permanent drain inserted. I really wanted to avoid having this for a little while longer, but I don’t think it is going to happen, if anything I think I may need to have it earlier.

The last few weeks we have had some pretty big decisions to make, one of these was my plans for palliative care. I was torn between going public or private, both provide amazing services. You could probably say that the public provides more services. I have however chosen to go private, this is different to my decision three years ago where I only looked at public.

My reasoning for choosing private came down to the fact that I have a palliative care doctor that works from Greenslopes Private, alongside my other two key doctors at present (oncologist and pain specialist), this means that my ongoing care for as long as I am alive will be at Greenslopes.

I have always been so scared of the idea of a hospice and being surrounded by people who are dying. The reality that a hospice would be made up of more old people than young. I worried that I wouldn’t cope going in and out for pain management and I would be stifled with the fear that I would enter and never get out again. I want to die at home.

From everything I have told about hospices, I know that my fear would disappear so quick, but at the moment I want to go with what is comfortable now.

At Greenslopes, the palliative care ward is the same as the oncology ward. I have formed an amazing relationship with the nurses and it is a place where I do not fear. I have been admitted and discharged many times before. And, if it comes down to not being able to die at home, Ward 31 is where I want to be.

Dying is already scary. I don’t need to fear the process too.

I am not going to go into much more about how I am going emotionally because it’s not great.

I mentioned on social media that things were worse. On Friday I sat down and had the very honest conversation with my oncologist that I needed to have. I told you that she thought 6 months was optimistic, but I hadn’t asked her what that meant. On Friday I was told that 2 to 3 months is what we are looking at based on what is happening at the moment and my body’s reaction.

This shocked me. I am scared and upset. I feel things are happening too fast.

That is all I want to go into at the moment, but I do want to thank everyone for donating to the MyCause fundraising my sisters set up to ensure that my end of life care is all covered and for Serge to be able to stop work to spend time with me and not have to worry about household expenses.

Our goal is to raise $50 000 and we are over half way there. Any money over that $50 000 would just be amazing in relieving the financial stress that Serge feels.

If you are able to donate, here is the link. Any donation big or small is so appreciated.