Friday 31st December 2010

Louis and Helen are still together in Melbourne and from the sound of things having a pretty nice time. They were able to visit 2 different family houses for Xmas day and have been having lots of visitors at their house in Northcote too - both family and friends. Louis had a few days break in Castlemaine and Susan kindly came to stay with Helen.

On Monday the 3rd Helen will go in to the Epworth Rehabilitation Hospital in Camberwell for 2 weeks - Louis plans to stay on at the Northcote house until the 9th so any mail on its way there will still get to her. I will join them in Melbourne on Monday the 3rd - in fact Louis plans to collect me from the airport on their way to the hospital! Douglas is looking after the dogs at Helen's house in Darwin.

photos from natsaha's darwin xmas

Wednesday 22 Dec 2010

Louis and Helen have moved - they are staying at 91 South Crescent, Northcote 3070 and will be there until 3 January. Louis' mobile is still the best way to reach them.

Saturday 18 Nov 2010

Well I am back in Darwin and Helen and Louis continue in Mont Albert. Helen is enjoying a weekend visit from her friend Judith formerly of Darwin but now based in Adelaide.

According to reports from Louis and Sally all is going very well.

Before I left Melbourne we all went to the Epworth Rehab hospital for an appointment with a rehabilitation physician called Dr M. She was lovely.

We have been offered a 2 week admission from the 3rd to the 17th January so Helen will stay down for this. I think it will focus on physical rehabilitation so we will wait to see whether it is still worthwhile going ahead with private neuropsychology. Helen's memory/cognitive variability continues to amaze, puzzle and fascinate me. There must be some quite specific parts of her brain affected and yet she is so variable! It's very hard to make sense of it. Dr M was not overly hopeful that brain function improvement was likely or possible with rehab but I think it's worth seeing what happens - afterall she had only a short time for assessment and the only observation she made was relating to short term memory deficits which although true is not the whole picture.

I have begun the laborious process of Centrelink forms again - quite Byzantine but hopefully with a good outcome.

Reverie Harp arrives in Mont Abert

Tuesday 14th December 2010

Life in Melbourne seems to be going along very well. Over the last week Louis and Sally have shared Helen's care in Darwin. There have been a wonderful array of visitors, including (but not limited to) Margaret, Julie, Cynthia, David, Carol, Greig, Robin, Mary Lou, Kathy, Tim, Darcy, Claire, Jamie, Barbara, Lindsay, Ramon, Mary, Susan.....

Louis has succeeded in organising all the necessary showering and injection visits (not as easy as it sounds) and also attending a Melbourne GP with Helen.

Sally has been generously abandoning her home responsibilities with dog, rabbits and Lindsay to spend time with Helen during the week and give Louis a little freedom.

This morning I met with Louis and Helen in Kew and we went to see Dr F - an opthalmologist recommended by a friend of mine.

Essentially he confirmed that Helen's visual loss is permanent and likely to slowly decline. Almost certainly due to vessel damage - caused by the radiation treatment - which may have occurred anywhere along the course of the optic nerves throughout the brain.

Her left eye is down to just very faint light perception only, her right can see colour, shape and light but no detail (cannot make out faces). He made it clear that nothing we do will help to improve the damage that has occurred (and nothing we could have done would have prevented it). We are unlucky that the blindness developed so soon (relatively ) after the radiation as some people would have years after treatment, but apparently all people receiving brain radiation will eventually sustain significant visual loss as a result.

This is sad news and discouraging but not a surprise and it is helpful to have it stated so clearly. Also we learnt she should be eligible for a blind pension (and associated health-care card) which is really good news for us and something we weren't aware of before.

The delightful happenings of this afternoon - after the appointment Louis and Helen and I went out for coffee then back to the Mont Albert apartment where we rendezvoused with Sally and Lindsay. Later in the afternoon Alison came to visit from Castlemaine bringing with her her beautiful new reverie harp for Helen to have a go of! She has offered to lend it to Helen for as long as she would like to...

Helen and Louis head to Melbourne

Well it's finally done! An amazing amount of logistics have been negotiated and Louis and Helen are even now winging there way down to Melbourne for a holiday.

In the first instance they will be staying in a serviced QUEST apartment: 105/741-745 Whitehorse Rd, Mont Albert 3127. I think the booking goes until the 22nd or so. The phone number there is 03 88431500. Louis will be the main point of contact however and is going to manage her social calendar plus the odd medical appointment as we hope to take advantage of Melbourne's more extensive services.

Louis' mobile is 0401 662 511

Wednesday 1st December

Today Helen had her Oncology R/V with Dr K. We discussed the CT Scan - either unchanged or slightly improved, Helen's state of well being, medications and plans for the future.

Essentially news is all good. He said that the median time of survival for people who have brain metastases at diagnosis is 6-9 months. As Helen has already lived longer than that she is outside the typical. It is a good sign that the brain mets are no longer visible on imaging (although doesn't guarantee they are gone for good). The main cancer in the lung is still there and that part of the lung is still collapsed. The amount of fluid around it is a bit less than previously and does not require any action. The size of the main cancer is the same or a little smaller. The clots in the pulmonary vessels are no longer evident.

So - his follow up plan is to keep going on the Iressa indefinitely, repeat chest Xray and blood tests in 2 months and repeat CT scan in 4-5 months. The implication being she may well live that long or longer. Apparently he has had one patient on Iressa who lived for 5 years after starting treatment - although I don't suppose a case study of one should be that impressive.

Anyway - our big news is this all means we can go ahead with plan A in which Louis and Helen fly down to Victoria together on Monday the 6th December (next Monday!) for a holiday and a catchup with Victorian family and friends. I plan to stay up here initially (with the dogs) and have a break from caring - probably come down and join them for Louis' birthday on the 12th.

Any Victorian friends reading this who'd like to see her they plan to stay in Mont Albert in a rented flat and visitors and outings will be very welcome - Louis is the best point of contact for this time.

Any Darwin friends who'd like to say hello and goodbye before she heads off please drop in! We are home a lot and visitors are a delight.

Captain Umpherston and Oncology Review

Thursday 25th November 2010

Yesterday was a big day of comings and goings as Alex and Greig arrived for a visit from Melbourne (Helen's niece and nephew), Louis returned from Brisbane and Douglas was about to head off back to Victoria when it turned out that the work he was going back for has been deferred and he is able to stay up for another week.

Today we all went to have lunch at Buzz Cafe and check out Absolutely Bookshop.

Louis was served with a most amazing Marguerita tower so we had to take photos at once...

The pirate cupcakes

Earlier this week I took Doug to check out Dimitrios Cakeshop - a Darwin Institution I was introduced to whilst working. We were excited to discover you could get black sparkly decorating icing and other elements necessary for making pirate themed baked goods so for lunch with Kaye on Tuesday we took white chocolate cupcakes and had fun decorating them together. Herewith you see pirate faces, a pirate ship with full sail and the full assembly of little cakes. Kaye's tongue shows the surprising discovery that edible black glitter stains!

Saturday 20th November 2010

Good news - verbal report of Helen's most recent staging CT scan of everything - no change in anything. I assume that means no more metastases and that the tumor and fluid affecting the R lung remain the same. This is great to hear. Not sure what it means for prognosis or whether it means the Iressa is proven to be useful or proven to be having no effect but either way the cancer is evidently pretty inactive.
I think this makes sense in other ways as some of the unpleasant paraneoplastic syndromes we had to deal with in the past seem to have stopped and also she has been able to put some weight back on and to keep it on whereas when the cancer was more metabolically active I think it was chewing up all her calories.
Sadly the weight is making her unhappy as it makes her belly feel uncomfortable and not like her own but I think she is looking much healthier in the face and body overall and it's much better than being a skeleton.
In the last week I have started treating her for a urine infection and I think she is a little more mentally with it since starting the antibiotics - although this could just be the inexplicable swings of her varying cognition.
During the week just gone Douglas has been the main carer while I have been at work and he and Helen went out for lunch with Kaye. The 3 of us all went out for dinner and drinks last night and we also made a brief trip through the Northern Editions Print studio to check out Dion's Cheeky Dog etchings - not that Mum could see them but we read out their stories together which was fun.

more photos

Helen and Natasha in the spa (actually about Helen's 10th time but she can't be convinced it's not ehr first!)
Reading Winnie the Pooh in the sweltering heat of the Build Up...I think we had the aircon on for my sanity and poor Helen was freezing again.

Some of the oil pastel squiggles Helen did with Dorothy - and a Helen P card up in the far corner.

photos

Captain Umpherston
Cousin Dorothy
Carol - the Scottish carer who loves staffies.
coffee art in Darwin - see it's quite cosmopolitan!

Saturday 13th November 2010

Once again I am behindhand with the blog so will have to employ a bit of shorthand to catch myself up. I hope those regular readers looking for news know they can always call us if I have been slack but also that in general no news is good news...

Dorothy's visit has come to an end and she headed back to Sydney and then on to Tassie last week. There was a smooth changeover on the Tuesday to the lovely Susan from Castlemaine.

Helen is well.

With Dorothy she enjoyed readings from The Magic Pudding and Winnie the Pooh, shared sessions listening to the book show, a drawing session with lovely oil pastels on creamy card, a few outings to share bits of Darwin including a trip to the Deckchair to see Secondhand Wedding, a few dinners at the Wharf and coffee at Martins. They finished the visit off with a trip to the Day Spa for a shared facial in the double room and popped in at Absolutely to see Peter. Dorothy also accompanied Helen on the Day Respite that Masonic Carers had planned for a trial activity but not too surprisingly this didn't seem like it would be much fun to go on with . They both learnt more than they knew there was to know about Bingo and met a few interesting characters, but for Helen to return on her own - given her vision and hearing difficulties and occasional disorientation not to mention younger age and different culture to the other attendees - just doesn't really seem worth pursuing.

Since Susan arrived things have been a little quieter. Last Wednesday Helen had her routine CT scan to assess the cancer's progression (or otherwise) and we are still awaiting results. Susan and Helen made an excursion to Kaye's house on Friday (and took both the dogs to play with her Lily). This afternoon Helen went in the spa again (it has been hot!) and we also had a small trip out to Parap Markets and a catchup with Naomi and Dianne. Presently Shirley is visiting and reading Helen poetry.

I have been continuing to work fulltime for Danila Dilba and Louis is still in Brisbane. The Build Up is not as bad as I feared. We are looking forward to visits from Douglas, Greig and Alex and Louis' return.

Tuesday 2 November 2011

Louis is back in Brisbane, I am working at the Darwin Aboriginal Health Service and Dorothy and Helen reign supreme at Helen's house in the world of chaos provided by my dogs!
Luckily Helen is pretty much always out of reach but poor Dorothy is available to be jumped on and have snarling interactions around and is getting more dog than she bargained for I would say being more of a cat person. She calls Umphy kitten which I find very sweet. I mostly call him puppy so I doubt he is bonding with his name much.
I felt a bit like an inexpert and harrassed young mother as I left for work this morning - 2 poos, 2 puddles, 2 walks, 5 snarling kerfuffles, 4 "timeouts" for Umphy, tea and ecco for Helen and me, put a load of washing on, didn't make breakfast, nor clean the kitchen, nor prepare lunch, nor organise my room, nor bring in the washing...and out the door....
Thank goodness for Dorothy but I hope they will be ok.

Friday 29th October

Today Helen's friend/cousin Dorothy came to visit for a week and they are enjoying catching up. I am going to fly down South for a wedding and return on Sunday afternoon. Louis plans to go back to Brisbane early next week.

Photos October 2010

Wednesday 27th October 2010

Well I think I will shortly have to resort to a photoessay having allowed so many days to slip by...

Happenings of note in brief: Louis arrived, Douglas departed, Umpherston and Jed are getting on ok (sort of), Bilha, Helen and I went out to see a band at the Darwin Entertainment Centre, Helen, Louis, Umphy and I went to Frillies with Kaye and Shirley, I had a birthday and we all went to the Wharf for dinner sans dogs then shared a birthday cake with pink glittery candles, H, L and I went on a nursery excursion and amongst other things bought a Grenadilla ( a kind of giant passionfruit I have always longed to grow), Louis took Helen for oncology review - uneventful in general - the plan being to keep going taking Iressa and have another scan on the 10th November, I have been still working 8-4 ish at Danila Dilba and Louis is doing sterling service with Helen and my dogs in his sole care...

Helen is pretty much the same. Sometimes sleepy, sometimes disoriented but generally pleasant, fairly well and taking an interest in life. Enjoying her contacts with friends and family both local and far away.

Has had some funny dreams lately and had a whole night where she couldn't stop herself rehearsing her old school song over and over (not something she had thought of much in the last 5o years or so)!

Photos to follow :)

Captain Umpherston arrives

Wednesday 13th October 2010

Doug and Helen have enjoyed a few visits and outings with Kaye and Shirley this week including a trip to see the Senior Territorian Portraits Art Display in which Shirley's self portrait is an entry. Of course Helen couldn't see them much but Douglas described them to her and then they all retreated to Speakers Corner Cafe at Parliament House.

Yesterday Helen was reviewed by Dr M at Palliative Care who was very happy with how she is going in general. A few fine tunings of medication but otherwise we are encouraged to continue as we are.

This week we received a lovely long letter from Peter and Joyce and also a few phone calls with friends and family.

Helen asks me to report that Jed has provided her with good company when others have been busy. I have been contemplating the slightly momentous step of getting a puppy so hopefully that won't be too outrageous for Jed and he and the new one will be able to share the task of keeping Helen companioned.

Monday 11th October 2010

I realised today that as I have never posted a postal address for us in Darwin since Helen returned to her own house we are a bit cut off from some of the people who used to write to us. For the time being her old Post Office Box - PO Box 1123 Nightcliff NT 0814 will still be a good way to reach us although at some point in the future I think we will cancel this one. Letters direct to her home at The Gardens will get here most efficiently but as I still feel a bit wary about putting this address up here feel free to email/message me if you want the full address.

Over the last week Helen and I continued on our path of the odd outing to cafes and visits at home with friends. On the weekend we have had visitors from down south and Douglas also arrived for a 10 day stint as the main carer while I start work at Danila Dilba.

Helen's cognition still varies a lot - at times she is quite disoriented, at other times quite with it. Sometimes she remembers all the things that happened the day before even though she had seemed not to really know they were happening at the time...

She has been listening to My Brilliant Career courtesy of Lil. She and I have finished watching/listening to Series 3 of When the Boat Comes In and I have been demurring over whether to buy Series 4 from ebay. Radio National is still a favourite - especially the Book Show which is fortunately available as a podcast.

She is eating well. Mobility is even better than before.

She does seem sleepier than she was and has had a slight cough and occasional shortness of breath. She is sometimes troubled by a rash affecting her eyelids - probably related to Iressa (the anti cancer drug). Still no pain and generally much more well than you might expect. A bit bored at times.

Monday 4th October 2010

Well, working my way backwards - the above photo is from this morning when Helen and I met her lovely friend Stephen at the Groove cafe in Nightcliff. She has taken to enjoying the odd weak latte again and being a coffee aficionado myself I am keen to encourage this development.

Since I returned last Thursday Helen and I have been going along fairly peacefully. She has received lovely cards and packages from Judith, Peter and Joyce and Dorothy and enjoyed a few phone catch ups with distant friends and family. On Saturday morning I decided to take her out to a cafe (the coffee interest again) and we had a funny sequence of events where we went to the coffee-shop where Helen's friends tend to congregate after Aqua Aerobics, found no-one there and decided on the spur of the moment to go to Frillies in Nightcliff instead. When we arrived there there wasn't anyone much we knew but we decided to stay anyway and after a few minutes Kaye and Shirley arrived having just gone looking for Helen at her own house after Aqua! I thought this was very impressive of them to intuit we might be at Frillies as it is the first time we have done anything so spur of the moment.

Saturday night Helen, Bilha, Shirley and I made an excursion to the Darwin Entertainment Centre - all dressed up!
We saw a play written and performed by Alan Hopgood entitled" 4 Funerals in 1 day" which was about palliative care, death and dying and was followed by a forum on palliative care issues with the audience and an expert local panel. It was pretty great - fun as a performance and thought provoking as well. Afterward Helen reaped the benefits of wheelchair travel as the actor came over to give her a hug and some special attention. A shame about her diminished vision as he is a pretty spunky 76 year old but Shirley, Bilha and I described him to her on the way home.

Helen and I are on our own this week - Louis is in Brisbane and I think will return next Sunday night. Monday the 11th I start fulltime work in Darwin for a month.

28th September

Just a quick update on Louis' and my movements. He is returning to Brisbane on Thursday for a friend's wedding and I am swapping with him at the airport!

In Helen news she and Louis went to the oncologist on Monday and she is continuing on Iressa - going well so far. She has put on a little more weight and has crossed the magic 50kg mark which was my goal. She is walking a little better than she was. All reports from Louis...

I gather they have made at least one excursion to the spa.

Friday 24th September

I am still in NSW where I have been earning money and feeling pleasantly engaged with other people's problems. Doug has returned to Victoria. Louis (and Jed) are with Helen. Unfortunately Louis has come back from Alice with a cold but he is doing his best to be aware of hygiene and infectivity with regard to Helen and to look after himself. This morning I spoke to Helen for the first time in quite a few days and she sounded in really good form. From what Doug says she has continued to vary while I've been away but this morning was a real highpoint - apart from the memory issues it could easily have been her former well self! If things go ok I was hoping to stay away for another week or so and have a holiday in Brisbane after my locum. Louis has a flight booked to go to Brisbane on the 30th so that won't really be possible unless we can come up with someone who'd like to visit next weekend and take our place. Any takers??

Monday 20th September 2010

The weekend before last was surprisingly busy as Douglas and Carol both arrived from Melbourne and Louis was back from Brisbane. We all went out to a fancy dinner at Hanuman's on the Sunday night courtesy of Aunty Margaret and also managed a bit of time in the spa. On Monday Helen was exhausted - so much so that we cancelled her ophthalmology review for the time being. Tuesday she and Carol went out to visit Peter at Absolutely at Cullen Bay and otherwise we had a quiet day. Louis headed off to Alice for the Festival and Carol, Doug, Helen and I went to the Deckchair to watch/listen to "The Spy Who Loved Me" before Carol headed off on another midnight Tiger flight. Through the rest of the week we had a few nice visits from Diane and Shirley, Doug, Helen and I went to a cafe at Rapid Creek then lounged on the Nightcliff foreshore for a bit and on Friday we all went to Kaye's for lunch.
Saturday I headed off down South to do a locum leaving Doug and Helen in sole charge of each other (apart from Jed) until Louis returns next Wednesday. After my locum I plan to stop in Brisbane for a bit of a break so Louis and Helen will be on their own after Doug leaves on Thursday.
In herself Helen has been pretty stable - often tired, sometimes confused but taking joy in company. She has been listening to an audiobook called "People of the Book", some podcasts of the Book Show, poetry readings from various visitors and we still watch DVDs together sometimes. Her vision is stably bad which is why I don't think there's much to be hoped from the opthalmology review. Appetite and enjoyment of food are good. We have a plan to decrease steroids again soon - hopefully this won't adversely affect appetite etc.
Theoretically we are about to trial Iressa (a type of oral chemo targeted at her particular cancer) and then see the oncologist again on the 27th but I'm not 100% sure that this is happening. I think Louis and I are both a bit ambivalent about it.

More photos

Photos from the last few days

Tuesday 7th September 2010

My friend Amber has been visiting for a few days. She flies back today and Louis returns at about the same time. On Friday (the day after Amber flew in from Townsville) we had a presage of the Wet season. The 2 days prior had been intensely humid and muggy. Friday morning the rain began. It poured and pounded and rattled on the roof. The frogs began calling again. It was delightful. The rest of the weekend was dry-ish - no more rain but moist air and rain clouds at times. Amber and I went marketing Saturday morning and in the afternoon she and Helen and I lounged around in the spa (heated to hot bath temperature for Helen's comfort - a bit full on for Amber and me). Sunday we had a visit from Annette - one of Helen's neighbours who hadn't realised she was home again. In the evening we three went to Sky City Casino to hear Katie Noonan play. It was a very fancy set up. Folding chairs on the lawn by Mindil beach, sun setting over the water. Each twosome had an esky with champagne, beer white wine, soft drink and water plus red wine and hampers of delicious snacks. Amber and I were marvelling at the idea that anyone could really make the most of such abundance. Helen said she was totally satisfied with a single bread roll spread with butter and Amber only drank one light beer. Such cheap dates! I did my best to make up for them both there and then and when we left we snuck away with baskets and bags full of goodies to fill our fridge at home.
Monday morning we all drove in to Darwin city and had breakfast at the Roma Bar. We went for a wheelchair walk up the street to show Amber the beautiful Darwin library in Parliament house then retreated back to The Gardens for a day of resting in the chair for Helen and hopping in and out of the spa for Amber and me (cooled down again to a refreshing temperature).

A less upbeat post

Not that it is any different to before but I want to write a description of Helen's state of vision/blindness. I thought this might be helpful for visitors here so they know how to alter their approach to her but also for those far away who are concerned for her and imagining our lives here.
Yesterday I took her back to the Optometrist who saw her at the beginning of her decline in vision back on ~5th August. She had examined her very thoroughly then (more so than the opthalmologist) so I thought it would be good to have a review with her. It was somewhat shocking for me. As I live with Helen day to day and what she can see seems to vary, plus we are trying giving her ongoing increased steroid medication to see if there is swelling around her optic nerves which can be reduced, I was hopeful that she would document some vision.
As it turns out she thinks both nerve heads show optic atrophy which essentially means the nerve fibres are dying which is not reversible. Both eyes are at the level of perceiving light and movement only and in fact the R eye was slightly better than the L even though this is the one that she found had a very constricted field when she first saw Helen.
I was disappointed and puzzled as in the day to day it certainly seems like she can see some things. The optometrist explained that blindness with optic atrophy is not complete blackness. It's more like being in a very dim/darkened room. She can still see shapes and movement and contrast but everything is very muted and indistinct. The optometrist said this is probably as bad as it gets so we will just have to keep living with it. We have another opthalmology appointment on the 13th so I will keep giving her the steroid tablets until then but it seems unlikely that it will improve anything if she does indeed have optic atrophy.
So...practically speaking in terms of interacting with her...she often has her eyes closed while she is awake so don't let this put you off, it is better not to have too many people talking in the room or around her if you want her to engage with you - just gets confusing to figure out who's saying what - so one to one or two to one is better than a crowd. If you are coming up to her it is good to put your hand on her arm and introduce yourself so she knows where and who you are. Even if she knows you well she may not pick it just from voice straight away. Visual input is minimal so sound and touch become more important. We've been enjoying radio and still watch TV shows together although she no longer needs shows with subtitles! She can still tell where objects are if we are walking with the walker to the toilet or the verandah and can reach out for a cup if you tell her it is there. For those who saw her a few months ago her walking and agility is much much better.
I have some audio books accumulated but haven't been using these much as yet.
In the last few days we've received lovely letters and cards from friends Chris and Greg, Peter and Joyce and Margaret. Helen enjoyed me reading these to her.
On Wednesday she and I went to her old Aqua-aerobics class and saw Kaye, Shirley and Bilha plus others Helen used to swim with. We didn't go in the pool but joined them at the cafe for the post work-out coffee. Jed came too and hid under a newspaper when the cafe owner came out as dogs aren't really allowed. He then disgraced himself by throwing up under a chair and after cleaning this and removing him I decided we should move on...
Anyway - just a bit of an update and some practical points. I found the optometrist's description of Helen's vision helpful as I had been imagining it to be better than it is.

1st September 2010

As it turns out Louis has to stay a little longer in Brisbane so Helen and I continue solo. We went to a play reading about the Katherine Flood on Sunday in the last gasp of the Darwin Festival. Neither of us found the play itself fabulous but it was a fun outing and we bumped into Helen's friends Megan and Denise.
Monday was a day of medical review. We went to see Dr K the oncologist first thing in the morning. His impression of Helen's vision was that it may well be a para neoplastic (weird syndrome associated with cancer) or idiopathic (something doctors can't explain) optic neuritis (inflammation of the nerves supplying the eyes. As such steroids may still be some help so we're going on with a higher dose of these for now.
In other medical news the scans and blood tests were all very positive - shockingly so in some ways.
Her lung cancer remains the same size or a little smaller, the pulmonary emboli are no longer visible, the fluid in the right lung is stable. There are no new metastases seen. The blood tests are all better than back in Brisbane - including almost normal sodium.
So...what does this all mean?
He has offered an oral anti-cancer treatment called Geftinib which sounds worth trying. Apparently it has a 50-60% chance of shrinking the cancer and treating para neoplastic syndromes. Side-effects mostly not too bad and can resolve if you stop the treatment. So we are going to wait until the steroid has had maximal chance to help with the eyes then consider whether to start with this new thing for a bit or not.
Certainly Louis and I feel on a roller coaster - the suggestion that she might have new brain tumours causing the vision deterioration seemed pretty dire and we were both anticipating a rapid progression and deterioration. Instead we have this very positive review...
Prognosis is of course uncertain and she still requires a lot of active care to keep her happy, healthy and able to enjoy life but she is enjoying life and it seems it will not be imminently curtailed. So...we go on!

"It's really rather nice..."