Mercy Palliative Care

Basically Mercy Palliative Care is a 24 hour district nursing service to look after people who potentially end up being in day hospital from now to the tail end or when you don’t need them any more. Very confronting. Came at 10.30 this morning and I haven’t processed it yet but thought I would through this blog. It was an assessment of where I’m at but I now have my own file; which is now in front of me.

The feeling that it brings up for me is just a bit more real - that that’s the way I could go; ending up in a hospice or whatever, or not.

So today, when she was talking to me, I was thinking that she was so nice - the girl that interviewed me – as with most nurses (Note: Donna has been a Nurse for over 20 years) I appreciate that it’s a tough profession and people are matter of fact. It was a clinical interview - she was asking lots of questions. Things around “do you have constipation? Can you shower on your own?” All those basic sort of questions. What sort of medication I’m on and obviously doing a summary of what has happened since 2005.

I don’t know …something about the file that’s… having it in the house feels a bit more real. She talked about down the track I might need to have injections for nausea and being available 24/7. It feels a bit more…what’s its like?.. a very useful service but not a service that I was ever going to need. But it’s something I need to deal with and a supportive service …confrontative. Frightening. Fearful . Thinking about feelings makes me feel a bit anxious. The unknown of what’s ahead.

I’ve eaten a lot of food today - not necessary. I’ve got really bad indigestion; trying to keep it down. I keep eating. I know I don’t need to do that much so I recognize that there’s still the iceberg, There’s stuff I’m still trying to push down rather than realize. I’m sure it will come. I feel like I’m pushing those emotions down through eating and watching the telly and not really feeling what’s going on.

So I did listen to the lady - couldn’t tell you what her name was - there is a counsellor there whose been there 1.5 years and I did think about it. I thought about not looking after myself but I did get the lady to get Bridgit to give me a call. It would be good to go to someone who knows about palliative care. It pushed me over the edge - palliative care.

I still haven’t cried about this - not one tear. In order to get through it I need to do that.

I’m just thinking… so I’m pleased that the lady came and made me think about how I’m still pushing my emotions down and how unhelpful that is. They are a really good service 24/7 a day and its free. The lady seems really nice and they are going to come every week on a Thursday. So organized and even thought its only one assessment, it seems a good service.

People should be aware it’s real if it feels really real. I wouldn’t say I’ve had a wake up call but it’s made me think a bit more about what I’m doing in regards to emotion.

They have a booklet - not sure whether people do read to understand a bit about the service. As bullet points they do; nursing service; medical service; allied health service; counselling; pastoral care; music therapy; bereavement support ; volunteers and there is information around patient and carers; nutrition and diet; nausea and vomiting; mouth care; bowel care; constipation; diarrhea; just so they know it. It seems like a really impressive service.

If we did go down the road of hospice they use Sunshine Health so its Western Palliative care. So I have a file. To stare at. How does that sound? What is the file? I think it’s a visual with palliative care on it. Often people have a file but I’ve never had a file at my house. People have files but they never keep it - that’s it. I can’t avoid it. I think that’s what it is and the name. Yeah that’s what it is .

I think a way down the track I think of getting through it.. this …yeah it’s the visual thing and the possibility of not getting through it and I haven’t really thought about that as much. Big sigh. I think that’s it.

I was going to just share where the tumour is at. I call it tumour; some people call a lesion; I’m assuming it’s the same thing. It’s in my temple lobe. It’s not the front – it’s on the side on my left and it affects the right hand side. I’ve got a big scar in the middle of the left side. It moves. When it got bigger it seems to affect me having seizures and missing… loss of use of hand and now it affects all of the right hand side and still more on the hand. Not quite sure how ultimately that’s going to go because there’s still a lot of the odemar - you call it swelling - which is being.

In the past it’s not had that much affect but since this started in September it’s been a significant part of my symptoms. I find it difficult to really think about what I’m doing when I’m in the shower because I have to practice. Most times you just have a shower and don’t think about it; you just think about the day but I can’t do that. I have to think about steadying myself in the shower. And getting dressed takes ages. All of it is a very slow process, which can take up to an hour just doing all that.

I’m feeling I’m going to have to stop because I feel really tired. Things seem to have got a bit better but I’m physically drained by it all. All the others times I’ve put on that it hasn’t affected me but this has really affected me. It goes in cycles with whatever is going on in my head. So I’ll know a bit more about what is going on when I have an MRI in December.

I think I’ve put it’s a multiforme which is the highest grade of tumour. It’s one; it’s the primary; it doesn’t metastasize; it stays in the brain. The chemo I was taking was keeping it away but I’m under the impression I can’t use it anymore because it’s not working any more. That’s why we’re looking at other options. The reason why it’s really quite harmful is once it starts growing it grows really quickly. This seemed to happen this year when I went in the second time. I think having two operations that quickly has really affected me physically and emotionally. That capture it do you think??


(Donna asked me to put in that I think Donna’s iceberg is an iceberg of tears frozen in time. Once it melts, there is an iceberg of a lifetime of tears that have to flow and deep in the middle of the iceberg are Donna’s baby tears).

I’ll cry a Noah’s Ark – that’s good; that’s what I need to do.

I think it’s important to put this down. This journey of being a cancer patient. I’ve researched; read various books and I always feel that there’s a bit of constraint and it hasn’t felt real; lots of .. too much thought put into it rather than the feelings; and haven’t .. I remember when Chris O’Brien and Kylie Minogue talked about what was going on for them - I didn’t feel I got what was really going on for them from the heart. That’s the main reason for doing this. People reading this will really feel it. I don’t now how I will feel down the track disclosing this. I hope it wont change. Just as a way of explanation. There’s also that Lance Armstrong - he wrote a bit more about what happened for him but explaining the process as well hopefully it will help people.

I’ve pondered on it today… good to talk about it when it comes and the palliative care helps – it’s all good.