Tuesday 19th July 2011

Today's post just goes to show how difficult it is to follow or predict any kind of trend with Helen's state of being. With no changes in her treatment or anything of that nature, no results (abnormal or otherwise) she has had a much better day both mentally and physically. The only sad event was that Louis, Susan and I took the dogs to Mindil and when we returned found poor Helen had been needing the toilet for a while and had not only been calling out but had fantasised that she had actually gone into several of the neighbour's houses to ask for help. I had to reassure her that I would talk to the neighbours and apologise - but I think actually it probably wasn't as loud as she thought otherwise Michelle certainly would have come over to make sure she was alright. Once we did return and sorted things out Helen seemed very settled again straight away and enjoyed the beginning of a talking book about a woman in 60s Australia who has relationships with pen-pals all over the world - a story just after Helen's heart as those who know her well will be able to imagine.

Monday 18th July 2011

I have returned from my week away and Helen is noticeably not so good. A bit hard to say if it's just more striking as I've had the hiatus, or whether I have just struck a bad moment but she is sleepy, weak and not very communicative. She was happy to see me and she enjoyed the dinner Louis made tonight. Also was able to walk very slowly to and from the toilet but a lot of support and encouragement was needed and Susan reports that yesterday she semi-collapsed on the same walk as her legs were just too weak. Louis also said yesterday was a particularly bad day. It does make it difficult to know how to plan. We haven't had any results or feedback on the bloods from last week. She hasn't really had any significant pain. Unfortunately Susan has had a flare up of an old back injury so definitely won't be able to handle moving/catching Helen. Still Louis is here for a fortnight and as we know Helen is quite variable so we will have to wait and see what transpires.

Monday 11th July 2011

Well the mysteries continue. Today Helen has been pretty confused, weak and sleepy all day. Still eaten well and managed short walks (almost as far as the toilet then needed to be wheeled). The lovely Dr M and Nurse RG from palliative care came for a home visit mid morning (triggered by our contact last Friday). When they arrived Helen was complaining of pain of 7/10 - almost unheard of for her. Jo said this started while they were walking to the toilet but then seemed to resolve. Dr M examined her and found an area of significant bony tenderness in her upper L chest which she thought likely to be a broken rib. We were all puzzled and concerned by this as if it is then by definition it has occurred with minimal trauma and would be likely to be either a bony metastasis or an osteoporotic fracture secondary to her steroid treatment. Dr M organised for us to have some strong painkillers available as well as regular panadol and planned that we will test her urine and bloods again - however in the end none of these things worked out for one reason or another! One difficulty (which we have had before) is that when she is very weak and reluctant to move around it is really really hard to get a urine specimen.
On the positive side howeverHelen really doesn't seem to be in any pain to me (and has not even had her regular panadol).
Tomorrow I depart for a week and Louis returns and the day after that Susan returns as well so she will remain well looked after. Helen has been really looking forward to seeing Louis again so I hope tomorrow is a more withit day and they can both enjoy it.

Sunday July 10th

Review of the week:
Friday - Audiology - no change/decrease in hearing! Very good news as I was anticipating an ongoing decline after his comments on our last visit.
Monday - Oncology. Results showed no progression of brain metastases (although there are actually 2 - 1 frontal and 1 cerebellar). Bloods showed recurrence of hyponatraemia (low sodium) with a level of 127. Discussed what to do next - options included more radiation to the brain - NO; more IV chemo- NO; change to a related but different oral chemo to Iressa - no; restart Iressa - maybe; do nothing - maybe.
With regard to the sodium the only treatment option is to restrict fluid intake again and the doctor suggested would be good to keep her below 1500ml per day.
Other major issue was whether to continue on the 2mg Dexamethasone daily (oral steroid medication). On discussion with her GP a week earlier we had decided to go on with this, but today it was suggested that weaning her off them is definitely worthwhile.
Feet are looking much better. The oncologist Dr K still thinks the problem may have been an Iressa side effect although the overall thinning of the skin is definitely due to the dexamethasone.
In the end we decided to try the fluid restriction, begin to wean the Dex (slowly) and stay off Iressa for another 2 weeks (and in the meantime use lots of emollients on her skin). Blood tests every 2 weeks then another review on the 8th August.
Tuesday - Palliative Care Review. Dr M was as lovely as ever. She was very impressed with Helen's overall physical state and supported the suggestions from oncology - in particular to try to wean off the Dex if it is possible.
Thursday - Podiatry. General foot care - nails, callouses etc.

Friday Helen had a very bad day - weak, sleepy, confused and really not able to walk very well. Jo reported that it took half an hour to help her to the toilet in the morning and that after a small amount of exertion she was very breathless, pale and sweaty.
In the end I discussed all this with Palliative Care and was offered/encouraged to bring her in for a hospital admission. The only limitation being that there are no beds available in Hospice and she would have to go in to the main hospital via ED. In the end I decided to defer taking her in and just see how she went. Saturday whe was a little better. Sunday (today) she is great! So...hard to say.
Interestingly we haven't been able to decrease her fluid intake as when we started to record it we realised that her current fluid intake is <1 L a day in any case.
So...possible culprits include electrolyte disturbances or our old favourite the UTI. Having said that she is much much better now and I'm going to wait til the working week starts again and then just ring up and talk it over with the doctor again.
We have begun to wean the Dex - alt 2mg with 1/5mg - but we hadn't started this when she first deteriorated.

Umphy licks Helen's toes

Feet are improving - doesn't seem to hurt to walk anymore - not sure if it's time, moisturiser, aloe vera, ceasing Iressa or loving licks from Umphy that are making the difference.

Cane toad in the freezer

I did put it in a bag ....but then in the morning the bag was empty....I guess they can still hop/crawl as their metabolism is slowing down...makes me wonder if it really is the most "humane" way to deal death.

Friday 1st July 2011

Today is Territory Day and Susan and I are preparing ourselves for the onset of fireworks and increased dog anxiety. Helen is well - feet improving although not perfect. She and I have been up together from 4am two nights this week - once as I heard her calling my name and when I went down to see her she said poignantly " oh I'm so lonely". That was sad but she cheered up quickly with company and we had a nice few hours together before I left for work. This morning was more positive overall as I just happened to find myself awake at 4 and when I checked on her so was she- although not lonely or distressed and actually able to have a bit of normal conversation with me. We had a bit of excitement when I caught an enormous cane toad that had been hiding under the cupboard in the atrium and Mum was very proud of me!
Tomorrow she will have another ct scan and Monday we see the oncologist and hopefully also get results of the blood tests. Tuesday she has a review with the pall care team and we have also recently seen the gp and have a plan to see the podiatrist, physio and audiologist soon. Just missing the dentist for the full hand!
She has been 2 weeks off the Iressa now and I must say I don't notice any improvement as a result - will be interested to see what the oncologist thinks about it as he had said previously that he thought if we stopped it she would be likely to deteriorate rapidly with re-activation of the lung lesion.