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.

Sunday 29 Nov

Helen has been glassy eyed, slow of speech and slow of thought over the last few days. Despite this she has managed quite a few outings and some quality time with a few friends and her lovely niece Kathy. As I was having a bit of a meltdown on Friday Louis, Helen and Kathy banded together to give me some Helen free time which has been good for me and I think she has coped pretty well with all her other supports.Douglas arrived last night for a short visit and he was pretty shocked to see how unwell she seems - much worse than when he was here for the hair shaving. Although the coming week is the "off" week for chemo I plan to get her to see either her GP or her oncologist in the next few days as she's really not in good shape. In terms of why - it's hard to say. My differential would include - ongoing low salt, ongoing depression, new increase in anti-epileptic mood stabilising medication plus addition of anti depressant, a hidden infection of some kind or worst possibility - some increased activity or change in relation to her brain lesions. Whatever the cause she is certainly not herself and is finding it hard to follow a train of thought in conversation.

Louis and I are starting a morning yoga routine tomorrow which will hopefully improve our own abilities to follow a train of thought. Having said which Louis seems to be going pretty well right now. Doug is going to stay up here for a week to hang out with us which is lovely. He and I might make a start on laying out "So Many Versions of a Life".

Friday 27th November

Yesterday as I wrote Helen had visits from several friends including Linda - shown here sharing shortbread from Peter and Joyce. Linda and Helen met at Louis' Yoga retreat in Tuscany and had a wonderful time afterwards shopping and exploring together in Florence.

This morning Helen said she had a good sleep and she ate a good breakfast but she seems a bit shaky and slightly confused so I have settled her down for a 30 minute relaxation tape in the hope that gives her a break from how she's feeling.

If the day goes according to plan she will have a bit more socialising today but we'll just have to see how it goes.

Thursday 26th

Well, the good news is that apart from ongoing low sodium (129 after a week of pretty severe fluid restriction) and fairly mild bone marrow suppression - oh and muscle wasting and weakness -Helen is probably the most physically well she has been since diagnosis. A wonderful result with the healing of the skin behind her ears is she can wear her glasses and her hearing aids. Despite the middle ear effusions the aids are making a big difference so she has access to some sensory input at last!

The bad news is that she is mentally not very well at all. Depressed, anxious, worried, hyper-vigilant, obsessional, avoidant, fearful. From my point of view it is as bad as when she was manic - in fact worse because this is so much more distressing to her than the mania was - and I guess as she's not in hospital she is needing and wanting a lot of support and input from me (for some reason more me than Louis at the moment) and I'm finding it overwhelming at times.

Friends have come to see her and take her on outings in the last few days which has been great - even though the idea (and perhaps actuality) makes her anxious and she doesn't think she can enjoy anything - it is still a good distraction from her worried cycle of thought.

Her psychiatrist has slightly reluctantly agreed to start an antidepressant (cipramil). He is worried about the worsening of the hyponatraemia (most antidepressants can make your salt levels go low) but also very concerned about her mental state and feels this in the best option. I really hope it works.

Several people have tried to express to me how "reasonable" it is to be depressed when living with cancer and awful medical treatments and facing premature death. I really don't agree- true depression like she has now is abnormal and horrible and neither reasonable nor rational. I hope so much it can lift and allow her to experience what is left of her life - including grief and sadness -no longer obscured by this dreadful state.

I think tomorrow she will spend some time with her niece Kathy and also a friend of Louis' who is a yoga teacher and art therapist. I hope she will be able to enjoy some of each.

Tues 24 Nov

Appointment with Dr G, radiation oncologist, today. We discussed the skin loss on ears and back and the hearing loss. Basically we did the right thing with looking after the skin and now it looks good. Ears wise - the canals are clear and the drums are dull - I got to look too! Basically that means there is fluid in the middle ear as is common with kids after they have a cold. This causes dulled hearing and is also a radiation side effect - will resolve with time and we can try conservative treatments to open sinuses etc as well. He did say that sensorineural hearing loss is possible from radiation but would come later than this so - fingers crossed!

This morning Helen woke up and said she had had "the most beautiful sleep" so that was a good start to the day. She had a visit from her friend Don T in the afternoon and I haven't yet heard how that went. Tonight she plans to go to a meditation evening with a cancer support group that have a Gawler connection.

Tomorrow is another big day with blood tests, chemotherapy, psychiatrist review.

Mon 23 November

Helen has headed out for a morning outing to Southbank with her friend Peta. This sounds deceptively positive as unfortunately she is in pretty bad shape. I feel like the flip-side of the mania is coming down on her with a vengeance and she is feeling terribly anxious, self critical, and worried pretty much all the time. Right at the moment I feel she is pretty much as distorted in her thinking as she was when she was manic - just the other side of the coin and it is very uncomfortable for her. I realise posting this may worry you all but have decided it's better for people to know than not. The positive things are still there including eating well, sleeping well, ears have healed up fully and so has the skin on her back so no more yucky dressings needed. Her hearing is still significantly down but she can wear glasses again so reading is possible. She managed to call her friend s Hans and Martina yesterday in Austria to wish him well for his 70th birthday which was something she really wanted to do - and even negotiated speaking a little in German. I am hopeful that her medical team will decide that they can risk antidepressants because it seems like a chemically driven mental state to me - for all that there are good and reasonable reasons to feel worried, anxious and sad it seems to have the wrong flavour for that. Anyway - for the time being distractions are actually good. If you are wanting to spend time with her try to do something active - ideally involving light physical exercise and eating food rich in protein and calories. Don't offer liquids as she is back on the 1 litre fluid restriction and is very worried about it so it is stressful to have to decline kind offers of tea and juice all the time. Having a chat is pretty stressful because really what she wants to do is go over the lists of things she is worried about and check whether she is forgetting anything so it just revs up her anxiety. Take her conversation and worries with a grain of salt - if you engage fully with them you too will become worried and I don't think they are fully real so this isn't a good idea for either of you! She really needs scheduled activities to fill the day and as I say distractions are good.

I hope to be able to post better news soon - things keep changing day by day and that's really the only thing we can be sure of.

Helen's Breakfast today

We are under instructions to keep encouraging Helen to eat - all the time, high calorie and high protein food. I am still on an early waking kick so I have been making breakfasts for the 3 of us.

In the last few days breakfast has been becoming ever more complex and enriched so I thought I'd share today's recipe with you all. Wholegrain rolled oats, salt, water, sultanas, prunes; then stir in almond meal and LSA, whole milk powder, whey protein powder with spirulina, kakadu plum powder; top with stewed rhubarb, greek yoghurt, clotted cram and a drizzle of maple syrup! She ate it all up.

Actually I gave Louis and me a slightly less enriched version - I don't really need to eat a lot of high calorie food...alas...

Wed 18 and Thurs 19

Well, as predicted Wednesday was terribly busy. Unfortunately I misjudged the timing of things and took Helen on a supermarket adventure in the morning which then rolled on into getting a blood test at the Mater, driving to Wickham Tce to see the Psychiatrist, driving rapidly back to the Mater for what we thought was to be a conversation with the medical oncologist but turned out to be the beginning of the next cycle of chemo - 2 drugs, 3 hours. Poor Helen missed official lunch but luckily we'd had enough non-official snacks to tide her over until the sandwich trolley came round at chemo. Increasing anxiety and slight confusion has continued to be a problem. The oncologist, Dr C, told us her sodium has done a rapid dive from 135 on leaving hospital to 127 now and this could cause confusion and twitchiness. Sadly this means she is back onto a litre fluid restriction. The psychiatrist, Dr A, said he felt it was all anxiety rather than depression and again there were various factors driving it not least of which is a biological effect of the cancer itself. He increased Helen's Epilim, kept Olanzapine at 5mg with the option of 10mg whenever we want to use it and suggested prn lorazepam rather than an antidepressant at this stage.

Thursday started well - Helen and I drove out to Fig Tree Pocket to meet Julie and her 2 children at Lone Pine. For those from elsewhere Lone Pine is an icon to the children of Brisbane - all of us were taken there at some point to feed kangaroos and have our photos taken holding koalas! In my memory I didn't think so much of it but the current reality was delightful and a very pleasant way to spend a morning.

Wed 18 Nov

Today will be a busy day - medical oncologist and psychiatrist appointments plus dressings etc. Next week we have a radiation oncology appointment to review the burns and the hearing - but both are slowly improving so we'll see. Helen is thinking a lot about Darwin and how to set things up to live there. At the moment I'm thinking the timeframe is still another month or so here but as I keep saying everything seems to change pretty quickly. Physically she is walking better and managing to do a few things - like sweep up a broken glass or move the fan around the room which would have been impossible a few weeks ago. Hopefully eating , sleeping and being active will continue and she will get a little stronger still. Anxiousness is still strong though...she has good insight into it but it doesn't really help that much. Brisbane friends and those who want to see her but don't want to go to Darwin should consider trying to plan visits in the next while.

I realise this contradicts what I wrote yesterday about limiting social contact - but I guess I still think it's worth having. Visitors just need to be sensitive so she doesn't feel like she has to pretend she's completely her old self as that's what's exhausting. I think sometimes when feeling anxious it can be good just to do something with someone. Evenings - after dinner and before bed are actually pretty good right now, as are mid-afternoons. Pretty awake and still finding reading and writing difficult so visits or outings could be a good. In fact she could be taken out to dinner if you find somewhere really quiet and are happy to take the wheelchair with you. The other tip I would have is not to ask too pointedly "how are you going?" as this requires a response and introspection that makes her feel worse. It would be better simply to tell her something about yourself or your own life (slowly and clearly) or to do something active or creative together. Anyway - that's probably enough prescriptive and conflicting advice from me - you'll just all have to play it by ear as we do...

Catch up!

Helen's beautiful flat on the ground floor of Dorchester St - scarves by both Helen Peake and Helen Pavlin. Glass mosaic a gift from Louis purchased at the Natimuk Frinj and driven to Brisbane by our friend Gareth.

My apologies for such a long hiatus on writing. News since I last posted....I am back in Brisbane with Louis and Helen. We are all at Dorchester St and Louis has done an amazing job of making Helen and I comfortable. It's an ideal situation to each have a little flat for privacy and comfort, Helen and I are next to each other on the ground floor and Louis is in his own home on the 3rd floor so it's all very handy for shared meals etc.

We have been having little outings together most days.

Healthwise there seem to be ongoing pluses and minuses for Helen. On the plus-side: she is having daily dressings from the palliative care nurses of her poor ears and the wounds are slowly healing. No longer weeping exudate onto the pillow at night and much less sore. Her physical strength is a little better - she has been able to make her own way slowly up to Louis' flat using the hand-rail and sometimes to manage a short unsupported walk - without one of us holding on. Walking is still slow and unsteady and very exhausting and any more substantial effort needs the wheelchair. Her (possible dermatomyositis) rash has completely resolved since being on the dexamethasone - no more itch! She is not coughing at all now and is only a little breathless at times.

On the less good side: She is very weak and tired. Everything seems like a big effort and it takes much longer than before to finish things. She continues to feel much more deaf than usual - we think maybe skin has sloughed in her ear canals causing blockage. The dressings on her ears make it hard to wear her glasses and awkward to talk on the phone. For all these reasons she is feeling more unable to do things. Also at the moment Helen is feeling more anxious and sad than she was before which also makes everything harder. She is finding it hard not to worry about practical aspects of life both in Darwin and here - something she was blessedly free of whilst an inpatient in Brisbane. On that note I will ask you all not to leave her phone messages as she is feeling stressed about having to remember them and return them and feeling a bit like she doesn't know what to say to people. Socialising is a bit of an effort right now.

Cards, texts, emails are all lovely and calls too but please don't leave messages, be clear you don't need/want a return call or letter and be sensitive if she sounds too tired to talk.

Basically if she is able/wants to talk she will answer the phone and if she doesn't it would be best just to try again at a another time.

I must say I'm looking forward to accompanying her to her medical appointments on Wednesday - at times the restraint required not to be a doctor and examine, prescribe and treat is quite a challenge for me!

Having said that I am quite clear it's not the right thing to do so I will try to restrain myself to intrusive suggestions to her actual medical practitioners. I have decided not to work as a GP at the moment and have resigned from a number of my roles in Victoria as I'm not sure when I'll be able to do them justice. If we settle I plan to start looking for some less "responsible" work - either medical or non medical but for the time being just managing the day-to-day and the ongoing streams of paperwork from my own and Helen's lives seems to be enough.

Louis has managed to teach a couple of his yoga classes - and I went to one as a student and thought it was great - but he too is still finding his normal work pretty hard to do and says so far teaching is an effort.

Still not sure on the timeframe of Darwin vs Brisbane. I am thinking maybe we will have to go as a "visit" in the first instance if Helen gets a little more energetic and positive than she is now. Would be good to have the ears healed up too before confronting the full tropics. Friends up there say the wet has sort of started - lots of beautiful evening rain.

At home in Brisbane

News of the week: Louis has found a lovely GP from Gladstone Rd Medical Centre to look after Mum while she is in Brisbane. She has already come round for a home visit to get to know Helen. She has also been having regular visits from the palliative care nurses from Karuna Hospice. Both she and Louis were very impressed by the caring and professionalism of the first nurse who came for more than an hour and since then she has been having daily dressing changes on her poor ears. Palliative care continues to be impressive as the best medical contact we have had in both Darwin and Brisbane (apart from the GPs). Maybe that's my antihospital bias showing through but I don't think so.
Helen's energy is still limited but she is enjoying some social contact. I think as long as she has shortish visits, regular naps and time for eating and exercise visitors are a good thing. Just double check with her about whethe she needs a break when you are talking with her.

Cytotoxic chemotherapy and radiation burning

I am still in Natimuk so my updates are long distance from phone to me to the web...but...Helen is home in her own new flat in Brisbane. She waxes lyrical about the comfort of the bed Louis has found her and how beautiful the place is in general. She and Louis are adjusting to the changes of having left hospital pretty well. Helen says she feels the exercises she has been doing have made a difference to her strength and capacity and they decided to leave the wheely walker behind for now (although she is still fairly unsteady on her feet). The timeframe for shifting back to Darwin is still unclear. Reports from friends indicate the buildup is in full swing so the climate will be pretty intense (I saw on a recent long range weather forecast that Darwin is to have a max of 37 next Thursday! That's pretty unheard of). Helen has a number of things she is looking forward to in Darwin so it is important to return before too much time goes by but also seems worth waiting until her immediate discomforts have resolved and the first cycle of chemo has been assessed.
Two things that sound hard to me - long distance as I am- the radiation burning is still emerging and she is losing skin from her ears, face, chest and back. Apparently this is pretty painful. She has creams but really has to wait for the cells to grow again - hopefully only another week or two but still...
The other is the "chemotherapy precautions" and the worry that she is "toxic" to others. She felt that some recent visitors were nervous when she hugged them, I hope this wasn't true but in case it was - I'd like to let all and sundry know - hugging and kissing is fine! The most toxic thing when someone is on chemotherapy is their urine and I'd be pretty surprised if any casual visitors were handling that - still if Helen has a predilection for Golden Showers that I am unaware of it might be best to abstain from this for the time being. In other ways please be as warm and loving as you would be normally....

"Precautions are only needed when handling your
medication or wastes. Casual contact like hugging, kissing
and touching are all safe. You do not need to be in a
room by yourself."

In other good news - Helen has her laptop back and access to the internet and she is slowly working her way through the last 2 months of emails! I will continue to print out special ones for her so she can re-read them when she is off-line. She also has her mobile and access to Louis' landline and although her energies remain limited she can enjoy some social contact.
Her postal address for now will remain c/o 8/13 Dorchester St, Highgate Hill, 4101.

Thankyou again for the beautiful messages of love and support many of you have been sending. It's very touching and supportive for us all.

The Body Monologues Performance on YouTube

As it turned out to be a 10 minute video I thought it would be easier to upload to YouTube than post on the blog. As the intro says - rehearsal was minimal and tech is dodgy but we were happy with it anyway. Thanks to Douglas, Anna and Louis for filming the show.

http://tinyurl.com/bodymonologues

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.

An outing!

Helen left me a message last night that she was being taken on a wheelchair excursion to the theatre!

Mon 2 Nov

So far so good as far as chemotherapy goes. Main side effects include fatigue and a feeling of cotton wool in the ears - hopefully temporary. Helen is in good spirits and looking forward to being discharged to her own flat near Louis on ~ Thursday. To stop things going astray it may be good for mail to be sent to 8/13 Dorchester St, South Brisbane 4101  from now on (Louis' address).

N is still down in Natimuk cleaning up after the Frinj and L is on his way home. Helen sounds like she's been going well in our absence. Some good visits with friends and focusing on doing physio exercises and stairs to improve her strength. The performance of the Body Monologues at Frinj went really well and I'm looking forward to showing Helen a video when I get back.

Helen's Poem for Natasha's piece of theatre Frinj

The Body Monologues Helen Pavlin

1

Me? I was always the inactive type.

I’d be reading while others gardened,

I’d drive where others walked,

I’d stay home when others hiked and camped.

"Never stand if you can sit, never sit if you can lie down."

I appropriated this advice for my own.

And I didn’t worry about my health,

confident I came from good sturdy stock.

Imagine the invasion of my mental space when my grown up children,

visiting, told me they’d cased the place and chosen the best gym for me!

Me? Gym? Silky leotards, young people, loud music, pointless movement.

They persisted.

I agreed to a visit.

Weird how I decided to keep going even after they went home.

How I worked to move from the small yellow dumbbells (I never used the tiny pink ones)

to the next size up.

How I worked at balance on the big ball and took pride in holding myself plank-stiff

even though push-ups continued to defeat me.

Then: I could carry my groceries in a single trip up three flights of stairs.

Novel! Real life outside the gym.

2

After a while I discovered the heated pool aqua-aerobics class

– so much gentler on my joints.

You can see the pain leave the faces of those with arthritis

as they walk down the ramp.

“It’s your body: you decide.” says the instructor.

But she sets a cracking pace.

The water respects my troubled back.

I am surprised how many old songs I recognise.

In the change-room, showers, and benches to sit on,

we half-dry our varied bodies, and struggle to pull up our knickers.

I stay for coffee. Some-one jokes: “You didn’t recognise me in the shopping centre.”

“I know you better without your clothes on,” I reply.

One morning Lucy, a twice widowed Filipina in her seventies,

shows us a photo on the real estate page: the house of the man she intends to move in with after they have both sold their properties.

A devout Catholic, she giggles: “I don’t know when we will get married!”

“You’re too old to worry about that – just do it!” says my friend,

who is glad that she just did it,

not knowing that her time would be so short.

3

“You need back exercises. You need to develop your core strength.”

I listened sceptically to the physiotherapist.

"More squatting, less bending."

I resume the physio’s exercises whenever my back lets me know it has detected that there’s insufficient maintenance going on,

after the holidays I give myself,

thinking I am fit again.

4

The ancient Chinese practice of Chi Gung is not about strength, of course.

It’s about breathing with movement.

“Make it beautiful,” says the Master, correlating movement with breath.

We learn to push our bellies forward, making room within for extra air, extra oxygen.

Beauty comes from smoothness of movement,

and gentle regular breathing, preparing body and mind for meditation.

Easier said than done, of course,

but I do get better at letting stray thoughts float away again without putting up a fight.

5

I sign up for a yoga retreat.

One instructor I am familiar with.

I recall once bursting out laughing in his class.

The movement he calmly requested was, to my mind, preposterous.

But then I watched as others did it!

What it is to have lost one’s spring!

The other instructor was new to me.

She planned each movement to arise out of the previous one – a beautiful sequence.

Her svelte form flowed from one pose to another.

I missed the pauses given by the first teacher,

when my body could come to terms with what it had just achieved.

I came to see her asa relentless machine.

My mantra became: “I can do anything... as long as it’s not forever.”

Like a member of AA,

I would exhort myself to hang on just for this hour,

just for this exercise,

just for this position.

6

What about circus?

I’d seen some older women do things – strong things,

sharing their strength and balance.

Support for each one's different abilities.

I love to watch them but could I do it?

It seems I could. . .