Chirley - how are you?

[Cheryl C]

Hi Chirley - I'm sure others are like me and wondering how you are going. Haven't heard much from you on the forum lately. I hope you're managing ok.

[SLB]

Was thinking the same thing, Cheryl... Hope all is well with you Chirley.

[Chirley]

Thanks for asking, I'm doing better than I expected at this stage. My blood tests aren't too bad but it looks like I'm headed for my first transfusion in the next couple of weeks. I haven't needed one for a few years now. Total WCC is 2 so I'm really happy with that.

I'd say my main issue at the moment is I'm back to 45kgs and vomiting all the time (luckily no nausea) which isn't very pleasant. I'm even vomiting in my sleep now. Since I'm not eating it's just horrible mucousy slimey gunk....yuck. I went out to a Sports Club with a social group in my wheelchair last night and spent a lot of time in the toilets throwing up but I also danced in my wheelchair on the dance floor....life's too short not to enjoy the bits you can enjoy. Absolutely shattered today though.

I'm planning (hopefully) to go to the museum to see the living dinosaur exhibition next week. Fingers crossed.

[Cheryl C]

Good to hear from you, Chirley, and to know that you're enjoying life as much as possible. Can't anything be done to help your vomiting? That's miserable! What's causing it?

[Chirley]

Hi Cheryl, the vomiting is caused by a combination of oesophageal and stomach dysmotility from the neuro disease and by the stomach surgery I had which went wrong. Unfortunately the saliva I swallow doesn't always pass through my stomach and I quite often vomit it up every half hour or so. There's no pattern to it or any triggers so I can't predict when it's going to happen. I just have to prepared all the time.

My dietitian just did her routine house call, she said it's time I made an Advanced Health Directive in case I have a sudden collapse.....I must be looking a bit off today She noticed the container of lollies (they are really for my mother and Aunt, but I have some too) on my kitchen bench and was quite pleased to see me eating rubbish. How things have changed.

Anyway, it's lovely and cool and overcast and drizzly rain so I might have an afternoon nap. The dog and both cats are all inside curled up in their baskets....very sensible.

[Cheryl C]

I'm really sorry to hear that, Chirley. It must be so uncomfortable for you.

I filled out an Advanced Health Care directive form recently. Just need to get some signatures on it. I certainly don't want my life to be maintained if I am in a vegetative state!

We have survived the Cat 2 cyclone which hit Newcastle area night before last. Massive winds - being next to the lake, there was nothing to stop them blasting us. Just had some leaky windows, fortunately only in the tiled areas, and some lattice blown down. No power for nearly 3 days now, with so many big trees and therefore power lines down, so no cooked food and no shower!! A kind neighbour with gas HW has offered for us to have a shower there so that will be wonderful. We've been sharing our generator with neighbours who are trying to keep their fridge going. We're fortunate to be in a kind neighbourhood.

[Chirley]

That weather event was all over our news up here. I hope the electricity is back on soon. I have gas hot water and stove...I did that on purpose...just in case terrorists attacked the electricity grid. We also have two generators....can't be too prepared.

It's not been very good here the last couple of days. I've spent the last two nights at a hospital with my mother. She had a fall at home and has a nasty fracture of her humerus in her dialysis arm. I spent the first night in ED with her and the second night (last night) in the ward because I refused to leave until she was seen by an orthopaedic surgeon. No one from ortho had been to see her in over 24 hours since admission. It wasn't until I told her renal physician that I was staging a sit in, in my wheelchair for as long as it took until she was reviewed by an ortho and that I was also going to put in an official complaint to the HQCC about the appalling medical care, that the ortho surgeon came and saw her within ten minutes. Suddenly she was given pain relief, a new type of immobilisation, a plan on how to access her fistula for dialysis without moving the fracture, analgesia written up to cover her for the dialysis session today and repeat radiology for progress reports. I swear, if you're not on their backs all the time, they are just plain lazy bastards. I'll be back tomorrow to check everything out too....don't trust them as far as I can throw them.

[Cheryl C]

Shocking, Chirley! Your mum is fortunate to have such a good advocate. I guess your experiences in the system have come to some good!!

[Chirley]

Thanks Cheryl, that's exactly what I said to the ortho consultant. I was going to continue to be a thorn in his side and my mothers advocate until I draw my last breath and I refuse to make any apologies for it.

When I went to visit her yesterday they had just called an emergency on her. Her BP and oxygen levels had dropped suddenly. By the time I left they had her stable again and all the tests had been done. I requested a phone call with the results. I got that phone call from the consultant within 5 minutes of leaving the hospital. It pays to show them you mean what you say. Otherwise you end up with situations where you get forgotten like poor Jules. She was just too nice and they just didn't listen to her. It never pays to sit silently.

[Cheryl C]

Really good advice, Chirley. You are right. It's tragic about Julie - I often think of her.

[SLB]

Glad to hear that you are hanging in there Chirley!! Sorry to hear about your mum but love hearing your stories of battling the hospital! If everyone could have such an advocate!

Glad you come through the cyclone ok, Cheryl.

[Chirley]

The problem is Sharnie....I have to battle my Mum too to get her to help herself! She would happily lie in the hospital bed and have everyone do everything for her and get clots and pneumonia. I had to ask the doctor to write up an order to make the nurses walk her three times a day just to make sure she gets out of bed. She's a shocker. She was even refusing to sit up in bed (which caused the low oxygen etc) until I forced the issue and told the doctor that my mother tended to act a lot worse than she really was.....the doctor got the nurse to get Mum out of bed and walk her then and there....her BP normalised and her oxygen levels normalised and they've been forcing her to do more for herself ever since. It's like dealing with a toddler. Let's just say my mother isn't very happy with me at the moment. She thought her arm fracture was going to give her a chance to wallow in bed with people waiting on her hand and foot. I told her that she'd broken her arm....not her legs!

[Cheryl C]

Had to smile at that last sentence, Chirley. As Wordsworth said, "The child is father of the man [woman]" and you are experiencing that, on top of dealing with your own issues so calmly. I so admire your spirit. Good on you, girl!

[SLB]

I agree with Cheryl... You are amazing, Chirley! Why is it that some people fight on against many odds while others are so reluctant to? It must be very frustrating for you! I hope you still find something to smile about