Discharge today

Turns out the show Mum went to the other night was "The Crucible" and all went well although she found it a bit hard to hear. Yesterday (Wednesday) she had her second chemo treatment which again is so far so good. No nausea. Main unpleasant physical effects at the moment - weakness, fatigue (possibly still due to radiotherapy and expected to improve), slight breathlessness and very burnt, painful swollen ears.

She is due for discharge today to Louis' care - both are feeling a bit nervous I think but will be fine I am sure. He has prepared a downstairs flat for her, painted in a favourite shade of yellow - "cowardy custard" I think it's called - and with a comfortable bed and a recliner for entertaining guests.

This morning she told me she was having a few units of blood transfused as her Hb remains ~10 but all her other blood parameters are fine. Hopefully that will ease the breathlessness a little.

Louis has found a nearby GP to see her while she is in Brisbane. I plan to be back up there again by the middle of next week. Any interstate visitors please liaise with Louis as he may be able to accommodate you in my flat next to Helen while I am away.

Despite her tiredness she is enormously better now than she was when we were in Darwin and I suggest visits and calls should be ok from now on. Just ask how she's going and if she's too tired go away again! Thanks to all those sending loving messages - Helen has been really enjoying them.

Saturday 24th October

Helen had an energetic morning - she and Peta B went on a wheelchair excursion to a local cafe where she had a quarter strength decaf latte. Strangely she enjoyed this - sounds awfully weak to me - maybe it was the company! She had a good long talk to her sister Jennifer in New Zealand who is about to go travelling for 6 weeks - they hope to see each other when Jennifer returns.
We had planned on another out of hospital excursion - Louis had thought we would go to the Greek restaurant near the goanna in West End. However, when we arrived she seemed pretty exhausted and we agreed to give it a miss for today. When I checked in later on it turned out that as well as exhausted she had been quite breathless - so much so she couldn't settle for a nap. Luckily one of the food attendants offered to put on her oxygen nasal prongs and apparently this made her feel much better. Medication rationalisation is continuing - now off all antibiotics. Still on steroids, epilim, olanzapine, temazepam and amphotericin lozenges plus her every day old thyroxine.
Strength and energy are much better than before and she is still sleeping and eating. Although talkative definitely insightful and able to be interrupted.
We had a lovely few hours together sipping Jaegermeister and gossiping (with the oxygen on). Each of us had a go at recording "the Body Monologues" for next weekend's Nati Frinj - not too bad barring a few small slips. I'll upload a version soon - voice and text for others to enjoy. Those coming to the Frinj I think it's on at 4ish on Sat 31st in the ShadowLab at GAS.
On which note I am going home to Natimuk after Monday - to touch base and to go to Frinj. Louis isn't sure but at this stage is thinking of staying here. Hence it is a good week for people close to Helen to spend some time with her whether in person (preferred!) or on the phone. Having said that please be very mindful of her energy - both in terms of overstimulation and exhaustion and remember she needs to be encouraged/supported to eat even when spending time with people. Short walks and exercise are good but wheelchair trips are also an option and probably necessary for going out of hospital.