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.