Friday 29th July 2011

Wednesday night I returned to Darwin and Susan took me straight out to Hospice. It was 10pm by the time we arrived so perhaps not surprising that Helen wasn't so with it but nonetheless I found it pretty distressing to see her as she was. Seemed like there'd been a lot of changes in the 6 days I'd been away - most notably in the look of her face and the way she was speaking. Her eyes were wide and starey and her voice slurred. She was a bit confused (although delighted to see me) and had a story about walking into the next room that didn't make a lot of sense but seemed to be important to her as she tried to tell it several times.
That night I felt perhaps this was/is the beginning of her final illness and despite having gone through this a number of times since she first got sick found myself feeling quite upset and sad.
Her house at the Gardens is strange without her. It's weird not to have Jo and even weirder to think that Susan and Freckles will move away after she dies.
Thursday morning however I felt more positive about how she is. I caught up with Kate the junior doctor on the ward and had a talk about how Helen has been going. Apparently the physio has been coming daily and has succeeded in getting her to do some standing and short walks (a good sign in general), she has had another Klebsiella UTI confirmed, she has a dermatology review planned for today and also a bone scan to look at the possible rib fracture and any other metastases. Apart from the confusion, weakness and tiredness they have been pretty happy with how she's going and apparently she has been eating well and settled most of the time. When I went in to hang out with Helen herself I had a look at the rash - definitely new and different to any of the weird rashes she's had before so I'll be interested to see if there is an official diagnosis.
Helen and I had a nice time together and she wasn't really too confused for most of the visit. I told her about some major personal stuff from my own life, we talked about the possibility that she might die in the next little while and whether there was anything she wanted to do or say at this time and I started a conversation about funeral/memorial ideas.
To those who haven't been hanging out with Helen over the last year that probably all sounds a bit direct but one of the lovely things about how she is - and how we are with her is you can pretty much talk about anything and there's no major emotional reaction or distress even when you really think there might be - it's very freeing!
I'm away again in Victoria until Tuesday and Louis is still in Brisbane. Susan is holding the fort at the moment but she will be out of Darwin from Friday to Sunday - so - any Darwin readers please do visit this weekend as I'm worried about her being lonely. Hospice is well staffed and a very caring safe place for her to be so I know she will be ok but visitors are still nice.

Wednesday 27th July 2011

I'm still away from Darwin at the moment but by all accounts Helen is going reasonably well. She still can't weight-bear apparently - and it doesn't seem to be clear exactly why but Dr A (another palliative care specialist) is planning a bone scan this week. The other symptom that has recurred is a weird rash which sounds as if it may be similar to what she had when we were travelling together in Croatia in 09 prior to her being diagnosed with cancer. One of the junior doctors phoned me on Monday and said Dr A thought the rash looked like --------necrolytic--------(3 long words which I have forgotten) which apparently is a paraneoplastic thing and she plans to ask the dermatologist to come and have a look. I have sent them photos of her original rash for interest :). Louis and I spoke yesterday before he returned to Brisbane and we think it seems pretty likely that the rash and muscle weakness are connected and also are connected to reactivation of the cancer since she stopped the Iressa - it is just so similar to how she was before she got really sick and was admitted and diagnosed with the cancer back in 09 - plus there's the recurrence of the hyponatraemia. Having said that we're not Helen's doctors so we will wait and see what others come up with. Louis planned to tell them we were happy for her to restart Iressa but I don't know whether it is too late for that to help or not. As far as Helen's support in Hospice goes I know Kaye and Shirley have both been visiting and when I rang last night both Jo and Susan were with Helen. Susan says Helen has been intermittently confused and a bit anxious in Hospice which is not surprising but sad to hear. I'm looking forward to seeing her tonight - but not to telling her that I'm leaving again tomorrow for a few days! Hopefully Susan will still be able to hold the fort over the weekend and when I return on Monday I should be pretty much in Darwin for a month. The dogs will be pleased too - Susan says Jed is very sulky! Although on further discussion she did acknowledge that perhaps he's just being himself....

Monday 25th July 2011

My apologies not to have posted while significant things have been happening. I have gone away for work again (and was actually out of phone and internet range for a few days). Helen continued to fluctuate last week but the bad days seemed to be worse - weaker and less able to stand or walk. She had 2 more episodes of pain (which hadn't happened since the last palliative care visit). So in the light of all this - and as we had not heard any results from the blood tests the previous week Louis asked Dr M to visit again on Thursday. Strangely all the bloods had been quite normal (except sodium but it was improved) so they had assumed things were ok for us. When Dr M visited the main focus was trying to find a way for Susan to cope if Helen wasn't able to walk (poor Susan's back injury has flared up again and she definitely can't manage Helen if strength is required) but she also made a comment regarding Helen's sleepiness - basically saying that increased sleepiness is often a sign of the beginning of the dying process irrespective of normal blood tests and lack of changes on imaging/CT scans. She suggested it probably wasn't worth us continuing to look at nursing home options (which had been in our minds again for when Susan leaves us at the end of August) - intimating that Mum may not live long enough for that to be needed.
Friday morning Louis and Susan had a very difficult time with Helen as she woke up complaining of pain in her back (he felt it looked as if she'd slept in a weird position), then when she was walking with Louis her legs collapsed out from under her and they both ended up on the floor! Not good for someone with back pain to begin with and pretty hard for Louis to get her back up and onto a walker/wheely thing. Would have been pretty much impossible for Susan on her own (which she would have been this weekend) so Louis changed his flights to stay in Darwin til Tuesday afterall. Luckily they got hold of me just as I drove out of range so we workshopped what to do and via palliative care Louis managed to get Helen admitted straight into hospice. This might sound easy but - long weekend in Darwin, not many beds, no medical staff rostered to hospice over the weekend - much more of an achievement than you might think! And so worthwhile. Las time Mum deteriorated and I considered hospital I ended up not doing it because I couldn't bear the thought of putting her through the process of being admitted via A and E, sitting in the freezing Main hospital aircon and potentially not getting a Hospice bed at the end of it all in any case. One of Louis' amazing qualities is his capacity for advocacy and Helen (and I) have benefited from this so many times.
I haven't spoken to her yet but Louis and Susan have been visiting and say she is relaxed and peaceful about being in Hospice and not uncomfortable or in pain at all.
The Hospice is a very safe feeling place with lovely staff, good nursing and (possibly best of all) the potential to open the doors and windows and have air at a normal temperature.
I think she is likely to stay in and have a bit more of a "medical" workup next week in case anything that has been happening is reversible plus to support Susan while I am away. At this stage I fly back to Darwin Wed night but leave again Thurs afternoon - then return to stay on Monday. Any Darwin people reading this feel free to visit Helen at Hospice - they are very welcoming and I'm sure Mum would like to see people. She is always happy to be woken if she's asleep when you arrive (really only takes a second for her to drop off again in any case) plus she has very explicitly spelt out that if she falls asleep while you are visiting and you decide to leave she would like you to wake her up to say goodby. Fair enough I guess when you have lost your vision, let alone are having memory issues.

Alfy the baby Cockatiel (our new neighbour) with Natasha and Michelle

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.