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.