Howdy,   I'm a bit late to this post but my partner & I have experienced the same sort of issues multiple times at the local hospital's  ED. She was diagnosed with Lung Cancer in Oct 2023 but has had auto-immune disease issues (Rheumatoid Arthritis aka RA) for years.   As one other poster mentioned, we too have a 'golden ticket' card that we are supposed to be able to use in order to get express treatment... but on 2 out of 3 ED visits it didn't mean much.   Visit 1: She had extreme body pain & a high temp as a reaction to the Immune therapy. Showed the card we'd be given by Oncology & it meant nothing. Spent 45 anxious minutes in the general waiting area & it wasn't until after I complained twice to the nurses in triage that we were taken through.   Visit 2: Julies Sodium & Potassium levels dropped to concerning levels & our Oncologist told us to head straight to ED. He phoned ahead & we were expressed through without needing to show the card.... obviously he had some sway over the triage system.    Visit 3: Julies blood O2 levels dropped sharply over 2 days, she was panting, felt heavy in the chest & had a temperature. Phoned the Radiotherapy clinic (a private clinic in the Hospital), an Oncologist said he'd ring the ED & we should go straight away. Arrived there, identified ourselves, showed our card, described the symptoms and mentioned someone should have called ahead. It made no difference ! . Grrrr. Called the Radiotherapy clinic for help & they said they's done all they could. Apparently a private clinic carries no weight in a public hospital. Grrrrrrr. Called our contact the Cancer nurse in the Hospital itself, she spoke to ED & got nowhere. Grrrrrrrrrr. We wait 20 minutes & by now I'm getting 'agitated' and the MSS security guy in the waiting room is starting to take notice. Calmly spoke to the nurse attending to the waiting room patients & brought the situation to her attention. She came over, took Julie's obs & within 5 minutes another nurse arrived to take us. That nurse took 1 look at Julie, said "Why did they make you wait out here" and "I don't need obs to tell me this is serious". 8 hours in an ED room, admitted for 5 days & had almost 3 litres of fluid drained from her lung.   In my opinion the Nurses are doing there best but have been seriously let down by successive State & Federal Governments of both persuasions. There's a chronic shortage of beds & equipment. On our 2nd visit there wasn't a IV pump available in ED to infuse a sodium solution, so the nurse had to go to another ward & pinch one ! Another nurse said she'd purchased her own equipment for her exclusive use 'coz sometimes there was nothing available.   We were advised by the outspoken nurse from our 3rd visit to use the magic phrases "difficulty breathing" and "chest tightness" as this will help get us through faster in future. Maybe it'd work for you too if you ever need to go to the ED again. ... View more

Hi Vicky,   You're in a very difficult situation.  I'm really sorry.  It must be heart breaking to see your son deteriorating and trying to keep on a brave face for his children.  You must be exhausted!  Young children are hard work and I think our children often forget we're much older now looking after their children.  As joyous as grand parenting is, be careful of your health right now and that of your husband's.  I have not been in your situation but the mother of one of my grandson's developed stomach cancer during Covid.  It was a terrible time and only her mother was allowed in the hospital with her as she died.  It was a terrible shock to us all and even her son who was under 18 was not permitted to see her.  From a distance we grieved and only 5 people were allowed at her funeral.     You're also isolated and away from you support network of family and friends.  That's incredibly hard. Just be gentle with yourself and your husband.  Nothing can prepare you for the emotions of your situation.  Eat well, sleep well and rest when you can.  You both have to look after yourselves or you will not be able to help your son during this time of crisis.     I wish you both well and hope you can find some light in your darkest time. x ... View more