Tuesday 29th December

Yesterday we took Helen on a wheelchair walk along the river by the Kangaroo Point Cliffs and then to a cafe on James St in the Valley. Doug, Louis, Jed and me. She didn't enjoy the cafe much - anxious about getting back to the hospital plus didn't feel like eating plus can't have anything to drink - maybe not such a good call on my part - but the walk was fun. She said the wheelchair vibrations felt like a massage as we negotiated speed bumps, boardwalks and bicycle paths.

In the end they deferred the blood transfusion so I imagine her Hb remains in the low 90s, her Sodium continues to creep up and is now 131! Yay! There is definitely a corresponding improvement in mental function although apparently in can take some weeks to recover from the insult.

Medically Helen's main issues remain the low sodium - thankfully responding to the stern fluid restriction, ongoing muscle wasting and weakness (probably cancer driven although other factors contribute). She is aiming to have at least 3 walks with her walker a day and although she does find it hard to get up from sitting once she is up seems to go ok. The nurses have told me to let/make her do things for herself - just to supervise and be available to help. The depression , anxiety, negative thinking and catastrophising continue but are not omnipresent. The psychiatrist's advice is to challenge negative beliefs and statements as they arise and try to avoid them becoming too entrenched.

From tomorrow (the 30th) Doug and I will go away down to Northern New South Wales. I will not post again til I get back - probably on Sunday so Louis will be the point of contact in the interim. For those considering spending time with Helen visits and outings will be good - even if she doesn't seem to want them. Her mental functioning is now good enough to experience boredom and this is not particularly good for her state of mind. Tomorrow - the 30th the afternoon will probably be taken up with having a session of chemo but in fact there's no reason she can't have visitors down there as you are just sitting in an arm chair letting the drugs flow in...

Saturday 26th December

Helen felt tired after our outing yesterday and more shaky than usual - she still felt happy to have gone though. Today her sodium has risen to 127, her Hb remains in the 90s and they are going to give her a blood transfusion later today. Poor little arms with all these frequent canulas and blood tests. Still hopefully it will improve her feeling of wellbeing a bit. She remains in bed 889 - ward 8 south and I would say will be in at least until next weekend and perhaps longer.

Louis has gone away from a few nights break and when he returns I am planning to go from Wednesday through to next Saturday. It is a good time for people to visit in many ways - we are finding it hard to do alone at present and Helen will benefit from company and mental stimulation even though she feels fearful of it. She does not want to use her mobile at all at present so you can't really call her but could try through the hospital switch. Otherwise I think just dropping in is ok and play it by ear. She really isn't doing much there so she's likely to be just sitting in bed. As I have said before flowers are not really an option as it is a chemo ward.

This afternoon she and I had a good few hours together with some meaningful conversation.

She had tried a little reading for the first time in ages but still feels her brain is not working properly and it was hard to enjoy. Still - great that she even felt like trying...

Friday 25th December part 2

Christmas 2009

Over the last few days poor Helen has been through the gamut - her sodium continued to fall to 121 - not a good number. She was starting to experience weakness and confusion and clouded thinking again. The medical team responded by decreasing her fluid intake to 500ml a day - not much! As her mental function improved it seemed her mental state declined and she was pretty negative and down again over the last few days. Nonetheless she was able to enjoy visits from me, Louis, Douglas and Peta B. They have moved her into Bed 889 where she has a "window seat" and more privacy as although it's a 2 bed room she's the only one there at present. This morning Louis and I had grand plans of being able to kidnap her up to Doug's parents' farm in Ravensbourne. It became apparent this was a rather ambitious plan so instead - we had a little food and ativan in hospital then packed ourselves into the car with Jed (my black staffy recently arrived from Natimuk). The 4 of us had a lovely stroll by the river in Orleigh Park, punctuated by Jed urinating on a nice old lady's chair (she was very understanding about it) and a delightful phone call from Margaret in Melbourne. After this we came back to DOrchester St and Louis cooked us a beautiful lunch as depicted above - buckwheat noodles, basil and soy, delicate omelette and steamed pumpkin and sweet potatoes. After lunch we decided to share a lie down on Helen's bed before returning to the hospital. They are both snoozing as I pen this update...

Tuesday 22 December part 3

Helen is continuing to try to be more positive - difficult though that is. Today she went for a short walk with the walker - made her feel pretty shaky. When I arrived at dinnertime she was sitting out of bed, at her own instigation, for dinner and she made herself eat almost all of the dinner - including a meat dish which she found tough but still she ate it!

She shared some delusional thinking with me from the last few days which she no longer believes and has the insight to see was delusional.

On Sunday Louis was visiting her and waiting to get a call from Jennifer to say she was ready to go out for lunch with him. 2 hours went by and he heard nothing. Louis went off to the backpackers where Jennifer was staying and found that as she hadn't been able to figure out how to call his mobile she had just settled down to read a book and wait. They went for lunch.

Meanwhile over the next 2 days (and nights) Helen created a scenario in her head in which Jennifer had gone missing in Brisbane. None of us were able to call each other owing to not having each other's mobile phone numbers. Jennifer's New Zealand family were distraught and held us to blame. A search was being conducted for the missing NZ woman but without success. This occupied a fair bit of her night - worrying and coming up with further complexities and permutations. As this was during the period where she was unable to speak fluently she didn't tell anyone her belief and was not given any reassurance. Yesterday when I spoke of Jennifer's departure Helen did not feel she could tell me what she had been thinking. Today however she does identify this thinking as delusional. She plans to tell Dr A the psychiatrist tomorrow. She says she really believed her scenario while it was happening but now has let go of it.

Anyway - I thought I would share this both as an example of the fact that she is still psychiatrically quite unwell but also as I think it is encouraging that she was able to find her way out of this delusion on her own and when she told it to me was able to summarise and focus on the highlights rather than going right back into it.

When I left her tonight she was still sitting out of bed and listening to some Radio National podcasts about a book by Robert Dessaix that she is interested in.

We also shared some lovely cards and gifts that had arrived over the last few days and she was able to enjoy these - last time I showed her cards and letters all she could focus on was how overwhelming it was to receive them and it seemed to contribute to her feelings of guilt and worthlessness. So...I think there are improvements although she is still not well.

Tuesday 22 December part 2

I'm delighted to report that when I visited this morning Helen was much more herself. She ate breakfast, spoke at a fairly normal rate (although still through clenched teeth). She was able to smile normally and to express an interest in the world around her to some degree. She spoke of how much she appreciated Jennifer's visit. As yet she has not had a blood test but Dr L says she bets the sodium is 126! We'll see. They also told me Helen's Hb is 96 and they are considering giving her another blood transfusion to increase her energy and sense of wellbeing. I met Dr H today - the palliative care physician at the Mater - she seems ok. If Helen does stay in Brisbane til she dies there are apparently beds in a suburb called Oxley - not near Louis' home and in a more nearby hospice called Mt Olivet. Unfortunately Mt Olivet is being rebuilt and until April people there will be in 4 bed rooms which is not ideal. Darwin palliative care in also an option but we will have to keep reassessing things. The flat at Dorchester St may need some bathroom modification if she is to come home again there.

Tuesday 22 December

A slightly out of date photo - this was taken at the birthday lunch Helen and I had with Louis at Sono, a beautiful Japanese restaurant at Portside in Brisbane. It was delightful with a view across the river, sunken wells for our legs under the table so we could pretend to be kneeling in comfort, all Japanese staff wearing gorgeous fabrics, yummy food and ume shu with lime.

Anyway....back to the business of updates and current reality...

Since Helen was admitted last Wednesday night things have changed only slightly. They started trying to correct the sodium with IV Normal Saline - and quite a lot of it in a short time. I was quite worried they would overload her with fluid but as this coincided with me going away for 2 days decided to try to trust that the other doctors know what they were doing - and even if they didn't she was in hospital where it could be sorted out! 24 hours later they stopped this and reverted back to 1L oral fluid restriction. They also ceased her cipramil and eplim thinking that maybe both were contributing to the sodium drop. She was referred to an endocrinologist - Dr L and finally to a palliative care doctor Dr H. While the medical oncologist Dr C is on holidays she is under Dr M who is the oncologist I originally wanted her to see when we came down from Darwin but I haven't met him yet. As of Sunday the sodium was not improving much - stable at 124 and Dr L changed her fluid restriction to 750ml for the day. They have re-instituted the cipramil at a lower dose and are leaving her off the epilim for the time being. Dr L says that only some of how Helen is is due to the sodium. A large part is probably due to her deep depression and both she and Dr A, the psychiatrist, think there is an "organic" component to this but they can't put their fingers on what that is - alas this means no useful comment on treatment, prognosis, potential for improvement...

In terms of how Mum seemed when I came back from my break: she is no longer intensely anxious and fearful; she does not seem to be having paranoid thoughts; she remains physically weak and can only walk with a walker now; her speech and thoughts are still very slow; her affect is quite blunted (for those without psychiatric/medical background - she has a fairly expressionless face with no emotional response or reaction to those around her); she still has some weird muscle stuff going on - mostly speaking through clenched teeth and Louis has noticed full body shakes and twitches at times. She says she is in no pain physically. She is not particularly breathless and not coughing. Yesterday however she was moaning slightly on every out-breath which was pretty awful . All I could get from her on this was "I'm so unhappy".

All we can do is hang on and hope for shifts. At this stage I think they plan to keep her in until next week. This means her flat here is vacant if any family members want to visit - we have deluxe accommodation available. For Louis and me to have someone else who loves her and would sit quietly with her would be a great relief. Even no talking but just providing company and comfort and an advocate with nurses etc. In some ways she feels really safe in hospital and is certainly relieved to be there but in other ways she is understandably worried that information won't be passed on correctly and they will make mistakes.

This weekend just gone she had a visit from her sister Jennifer from New Zealand.

Yesterday she received a beautiful copy of a photo of her mother Janet drawing fairies on the blackboard when she was a student teacher. Both gave her pleasure.

My grandma Janet was an amazing artist throughout her life and crayon fairies are not the half of it....

Thursday 17 December part 2

Not much change through the day today. Thank you to the Gramers for their beautiful package from Austria and to many others for Christmas cards and other good wishes. A gorgeous bouquet of pink rosebuds from Dorothy. Alas as she is in the oncology ward which is full of people who are immune suppressed she is not allowed flowers so we have had to take them home and it would be better for people not to send her more at this stage. Just a waiting game for the next few days and we'll see what happens.

Thursday 17 December

Not too surprisingly yesterday was a big day - thank goodness for Carol. I will report on the bits and pieces of the day but the important outcome was that Helen was readmitted to the Mater Private at 6.30 last night. She is in Ward 8 South, Bed 890, under Dr C. The reason for the admission is that as well as becoming progressively slower , weaker, sleepy and more confused in the last few days Helen's blood tests yesterday show that in 7 days her sodium has fallen from 130 (which is low but tolerable) to 122 (which is barely tolerable particularly as a rapid change). In terms of what has caused this - well as doctors often like to say - it is probably multifactorial. The underlying pathology is probably SIADH - a para-neoplastic syndrome caused by the cancer producing a hormone that causes the body to retain water and thus dilutes your sodium. This is what has been being addressed with the evil fluid restriction of 1 L a day - which she has been absolutely rigorous about. In fact over the last week I think she has actually been erring on the side of quite a bit less than 1L a day. She has also been having salt supplements for the last several weeks - not particularly effective but something.

The idea is that in hospital they can give her intravenous salt supplements and at least rectify the biochemistry and then see what is left in terms of the mental clouding etc.

The new variable over the last week has been increasing the citalopram (anti-depressant) to 60mg - a well known culprit for lowering sodium. Dr C thinks that the depression is still a significant factor to how she is - as do I and Dr A the psychiatrist - so it's hard to know what will be the best approach if they decide this did cause the rapid sodium drop. Plus it's not a good drug to stop all of a sudden.

Now for some more positive news. The scans are really very good and so are the other blood tests apart from the sodium. The brain metastases (which were admittedly very small) are no longer visible, the lung lesion has significantly decreased in size. She still has fluid around both lungs and the heart but it's not a lot - more on the right than the left not too surprisingly. There are some patchy changes in the right lung that might indicate infection although she has not had any coughing, nor fever that we have identified.

Still as Dr C says - a good scan is no comfort when you are not "good" in yourself.

Overall I am really glad she has been admitted. She has been deteriorating very rapidly in the last few days and not only do I have some hope they may improve her state, she really is not well enough to drive all over the city for appointments - which is the routine we had planned for the next few days. Not to mention the fact that I am really not coping that well with any of it right now and it is a huge relief to have other carers available to her and watching out for her in hospital.

Visitors - maybe not just yet - she is too slowed to talk and probably couldn't get much pleasure from them at this stage.

More news as it becomes available.

Wed 16 December

So, it's now a week since we stopped the Olanzapine. I think a few of the things I thought were side effects have resolved - fewer episodes of chin trembling, slightly free-er movement of arms and legs, less hand tremor. However, day by day she is weaker. Less able to walk independently . Has lost a little weight - not as interested in food as she was on the olanzapine plus not sleeping quite as well. Even slower and more quiet. Has worries all the time - especially to do with managing the day-to-day. Plans are a worry but no plans are a worry too.The worries cannot be soothed by rational discussion or challenge. She is also voicing some small paranoid thoughts. For those of her friends and family interacting with her at the moment please take this into account. Even very benign comments can be turned around - for instance she is distressed about one of her friends in Brisbane, who someone else told her was upset not to have heard earlier that Helen was here rather than in Darwin (my fault if anyone's) and when that person sent her a Xmas card it was a trigger for a whole bunch of self recriminations and ruminations.

She does have quite a bit of insight into how she is in some ways - not about the worrying so much - but is conscious how different she is and feels shy and ashamed about it. Really misses her capacity with words and the ability to participate in conversation and social interaction in a lively way - or at all. No interest in answering the phone - possibly sending texts may be a better way to communicate.

Anyway - no doubt this sounds all very doom and gloom. The only constant is change so we'll see what the next bit brings.

Yesterday she had an outing with some long term Brisbane friends and the last few days my Aunt Carol has been here. Carol is a good friend of Mum's and also a very experienced and competent nurse. Louis has taken the chance for a short break and I am enjoying her company and support, as is Helen.

Today we have blood tests, a CT scan (brain and chest I think) - the first since radiotx and chemo, review with the oncologist, possibly referral to and review by the palliative care doctor at the Mater (at last!) and the last lot of this cycle of chemo. That means next week there will be no treatment i.e. a "chemo off week". The results from today will help decide whether it is worth continuing to have the chemo or not. In the week following today the only medical appointments at this stage are: review with the palliative care nurses (again at last - I was quite angry with them for their limited contact and they now plan to come weekly); review with the psychiatrist and review with the GP (another new "innovation" - I think if she has some regular contact with a generalist and co-ordinator it will be a good thing - especially for me!).

Helen's sister Jennifer plans to arrive from NZ on Friday - I am not sure for how long. I will be away visiting a friend for Friday and Saturday but Louis will be back on deck. Again there will be a blog hiatus while I am gone. I will post the medical test results and an update next Monday - and of course more in the interim if anything major changes.

Some thoughts from Helen's brother Robin following his visit

"It was good having time with Helen. We had some reminiscences and I think some good talks, going slowly. Helen is clearly not what she was but she is still there inside. Quite a lot of quiet time. She seems not much interested in reading although she does appreciate cards. Margaret sent a nice one with a couple of family pics and Chloe & Cloud at Princess St. I found some of the cards very touching, especially Helen Peake's. She is an artist and clearly a good friend.

The morning at the pool was very enjoyable for all I think. Natasha blew in after breakfast, announced the plan and off we went.

I copy this to others as an update.

As the blog indicates Helen has slowed down, apparently in talking, thinking and walking but she is still doing all these things, including stair-climbing as an exercise. She does not like the idea of talking on the phone although a conversation with Margaret seemed to go quite well.

The attached directions tell how to get to the flats from the airport. Helen and Natasha are in flats 1 and 2 on the ground floor and Louis is in flat 8 upstairs.

I stayed in a good quality backpackers which Louis introduced me to at 61 Gladstone Rd, quite nearby.

It was good to be there for Louis' birthday party last Friday night. Rain held off, a very pleasant warm evening with spectacular clouds and lightning - very nice sitting on the rooftop chatting with Louis' friends and enjoying a splendid Bouillabaisse prepared by Natasha.

Natasha and Louis have made arrangements and are daily providing the best of care for Helen as she goes through this difficult time. Our thoughts are with you both as well as with Helen."

Saturday 12th December

Louis' 36th Birthday today! His feast on the roof went really well - a blow up pool, hammock, daiquiris, bouillabaisse and olive bread, salads, friends, Helen and Uncle Robin, babies and small children and lightning without rain or thunder. Today he has lots of work stuff to do but Robin is flying home and Louis, Helen and I will have a birthday lunch together I think.

Anyway - as promised here is some medical updates.

Overall as regards physical health Helen is doing well - she is eating and sleeping ok, trying to do a little light exercise daily. Her mental health is bad. She is still depressed and anxious - by which I mean psychiatrically depressed not the everyday kind of flat or sad. I really want to emphasise this because I am finding that many people - perhaps unfamiliar with mental illness or fearful of it - want to try to redefine how Helen is as something relatively trivial and something she can be "cheered up from" or "counselled" out of. This is not helpful to her nor does it make for straightforward interactions with others and also...it's driving me nuts!

The qualities of her current mental state - she finds it hard to think - thought processes are slow, it is easy to get stuck on an idea or thought without completing it; making decisions and assigning priorities are very difficult - asking her polite questions or offering her options does not work very well but it's really hard not to do; physical movement is also slow - more on that later; she easily gets stuck just staring at things; mentally she feels quite blank - as if there are no thoughts inside and the thoughts can also go in the middle of a sentence. Having said this there are times when she speaks fluently and coherently with a normal stream of though - this seems more successful when talking about something removed from the day-to-day and present realities. The other aspect of the anxiety and depression is "catastrophising" - this is better than it was but she is apt to leap to really extreme and unlikely negative outcomes for all sorts of situations and it seems as if the drive to find the thing to worry about is so strong it will almost make things up. This is not rational. It does not need to be dealt with rationally. Helen does have insight into this and you can challenge it explicitly. Having said this Louis and I try to avoid obvious triggers - i.e. now is not a good time to tell her about frightening, threatening or ambivalent situations or issues. The other feature of her current mental state is fear. She is easily and intensely frightened by all sorts of things. This includes plans and suggestions for pleasant activities. This is also not rational. It is not good to give in to this fear and avoid activities. She needs support and distraction and to be gently bullied and encouraged to do it anyway.

So - enough of the description. What are we doing about it and what's the prognosis?

She is still seeing Dr A - the psychiatrist her took her on when she arrived in Brisbane at the Mater. She had been continuing on a low dose of olanzapine - the antipsychotic started for the mania which really helped for the mania. Its ongoing side effects included sedation - helping with sleep at night - and increased appetite - helping with maintaining her high calorie, high protein diet. In fact I think the side effects were the main benefit in the last few weeks. Having said that, when I returned from Melbourne Helen looked to have developed one of the rare and horrible antipsychotic side effects - basically like developing sudden Parkinson's disease. This includes involuntary quivering of her chin and hands, small hand writing, stiff arms and legs, walking on the spot and staring. These have all been slightly evident for weeks but suddenly became much worse and also no doubt more obvious to me due to having been away. When she was first depressed and before starting antidepressants I tried reducing the olanzapine but she became much more agitated. Now she is on antidepressants the agitation has reduced generally so it seemed it might be a good time to try withdrawing the olanzapine again.

On Wednesday she saw Dr C the oncologist. She agreed with my concerns about the possibility Olanzapine was causing Parkinsonism and that we should decrease it. In the end I stopped it and luckily when we saw Dr A 2 days later he agreed this was the right thing to do. I think there has been an improvement since Wednesday in those Parkinsonian effects and apparently there may continue to be some improvement until Sunday. After that, if they persist, Dr A says it can be a primary effect of the cancer - hopefully not.

He also said to raise the cipramil to 60mg a day.

Last Wednesday the blood tests were really as good as they could be. Her sodium is slightly improved despite the cipramil. She has another round of chemo next Wednesday and before that will have a CT scan. This will be her first imaging since the radiation and chemo started so it will be interesting to see what it shows.

Anyway - enough from me for now - please do still spend time with Helen and take her out - just make allowances for her state and don't have too many expectations of it. Hopefully the antidepressants will make a real difference in the next few weeks and a bit more of herself can emerge.

Thurs 10 Dec

A gift brought back from Bendigo - pretty underpants and a summer nighty.

A morning at the pool in Yeerongpilly - a fierce Brisbane summer's day. Robin and Helen did vigorous walking in the water together. Helen got cold but lasted longer than the first time we tried it and we all had fun. Coffee and ricotta cheesecake for morning tea. Tomorrow and the day after are devoted to Louis' 36th birthday celebrations - we are having a feast on his rooftop so I will defer medical type updates til after that.

Thursday 3 Dec

Today was not so bad. We saw Dr Astill and got blood test results - all bloods were pretty good. He feels the state of the last few weeks is truly due to major depression so we have to push on with treating that. We got new glasses chosen and ordered. Helen managed a supported walk around the block and the stairs to Louis' flat twice.

Tomorrow I go to Victoria until Tuesday. Any Brisbane readers who would like to contact Louis and make plans to take Helen out over the next few days - please do feel free. It is a bit hard when it seems she doesn't really enjoy anything but she needs to be firmly and lovingly made to do stuff! Psychiatrists orders - not just boss daughter's opinion plus I think it will make it easier for Louis if he doesn't have the whole caring all to himself.

Next Tuesday Helen's brother Robin will come back to visit for a few days.

My posts may drop off while I'm away but I will put up any major changes - otherwise look for me again after Tuesday next week.

Wed 2 December

Things continue fairly unchanged. I would say overall Helen's mental state remains worried and anxious. Less depressed than before. Her cognition, decision making and capacity to prioritise are all still poor. Yesterday Doug and I interviewed her with a voice recorder to capture some memories of Anne Fraser - her friend from high school who was murdered at age 21. This went remarkably well and we have a 37 minute recording to share with Ann's family. Today she had a brief visit from Don T who kindly brought a particular alternative remedy to offer. Helen was troubled that she sent him away rudely but she did not feel able to cope with the prospect of telling her mainstream doctors about an alternative treatment. We agreed she can revisit the idea at a later date if she wants to and that Don will probably have coped!

Also this morning she succeeded in cancelling her EFT arrangement for her business in Darwin and she and Doug had preliminary discussions about "So Many Versions of a Life". So...when I write it down I realise she is actually a little more functional than I have been feeling. We have a review appointment tomorrow with the psychiatrist Dr A - I am hopeful he will have some useful input.