Tuesday 29th June 2010

Helen and I are enjoying a surprise visit from Douglas and Jed - Doug is reading her some PG Wodehouse at this very moment. Jed is being very polite with the baby chickens.

Yesterday we went to the oncologist again and had a much better interaction - still not clear whether to take up the treatment offered or not - further thought and discussion required. Last night Kaye brought us a fabulous rich beef stew/soup with peas , potatoes, turnip and more. We had a lovely time eating together on the back verandah and Kaye and I drank champagne from Helen's pink Czech flutes while Douglas and Helen stuck to less stimulating beverages. We had to send the nighttime carer away without her doing anything for us as it would have interrupted our socialising.

Today H had another visit from Rory the physio who's been helping stretch her ankles and practice standing and weightbearing. He confirms she's doing better than when he met her and will be back next Thursday.

In less good news her weight today is only 44.2kg which is 6kg less that when last weighed in Brisbane (on the same scales which have just arrived with my boxes). She was about 55kg at the end of last year so it's a fair drop overall. Ah well... more nutrison etc

Helen reading Sandra's poetry

Baby chickens

Sunday June 27

Helen and I have had a fairly routine week. She has had some lovely visits with Shirley, Bilha, Sandra and Bronwyn. I have On Wednesday we had a fairly draining and unsatisfying day attending the oncologist. The appointment was planned to discuss recommencing/continuing chemotherapy. In and of itself the result is not terrible - they think Helen should cease having IV chemo and consider an oral treatment - a "tyrosine kinase inhibitor" instead, but the process of the appointment was not so good. We waited for an hour and a half to be seen, then saw the registrar who had not much idea about Helen's situation, then saw the oncologist himself Dr K who seemed to me to have made up his mind without seeing her and wasn't particularly interested in finding out anything about how she had been going and what if any symptoms had developed during her 4 weeks off chemo. Anyway I found it upsetting and after he left the room leaving us with the registrar I burst into tears which he was somewhat uncomfortable with - going for the old doctor standby of "let me get you a tissue" but then offering me a selection of those hard dry cheap paper hand towels instead. As I obediently dabbed my eyes on their scratchiness he said "I'll just print you out some information on that treatment - it can cause an acne like rash...". Ah...doctors...

Anyway I still don't know where we are with that but I was informed the other day that we have another appointment with oncology tomorrow so I guess we'll discuss it further.

The news of the day is I impulsively bought Helen 3 week old chickens at the markets this morning so we sill have them as mobile decorations/entertainment for a bit. Photo to come.

Also over the last week we have not used the hoist at all as she is doing much better with independent mobility and is able to do her own transfers with support. I have turned the hoist into a clothesrack for the time being - the visiting doctors and nurses comment that it is the most expensive clothesrack they have ever seen.

Bilha visits with Helen and they both model handknitted beanies courtesy of B

Monday 21st June 2010

Photos from Tim and Sally's weekend 3 weeks ago

Sunday 20th June 2010

Helen and I have been having a pleasant time together at her house. The carers continue to come morning and evening to help with day to day things and the palliative care nurses pop in later at night. Yesterday we had a lovely visit with Shirley and workshopped the self portrait she is working on. This morning Kaye visited on her way back from Adelaide and on to Broome.

I gather from Louis' comments and also the reflections of the carers and friends who visit that Helen is generally more alert and more well at present than she was a week ago. I will be the only person here at the house with her for the next 8 days or so - so if there are any readers contemplating a visit from far away it may be a good time, both as she is relatively well and able to enjoy company and also as I'm sure after a bit I will feel I could do with help and company too!

I will post a picture of Helen and the carers using the "hoist" or "lifter" depending where you did your nursing training. It is a kind of mini crane and every time I see them using it I think how much my Uncle David would enjoy it. Luckily for me (and perhaps for Helen) she has been more able to move herself and to stand over the last few days so I haven't had to use the hoist yet myself. Apparently I need to have a go as a passenger to really understand how it works before trying to move Helen around with it.

Friday 17 June 2010

Louis would like me to say that he has been absolutely incredible...which is in fact true!

I have just returned to Darwin and he is heading down to Brisbane tomorrow morning. He's done a fabulous job of setting up and organising Helen's home and it is a lovely place to arrive to. She varies her time between the hospital bed in the downstairs lounge-room gazing into the greenery of the garden, the reclining chair and small journeys to the shower Louis and Jamie have created under the ferns in the Atrium. Yesterday when I arrived Shirley was visiting and later in the day Belinda dropped in. Later on L and H and I watched 2 episodes of Rumpole and had a nice time together (I have now acquired the complete collections of Rumpole AND Foyle's War - both of which Helen is very fond of).

We have carers visiting morning and evening to help with showering, toilet-ing etc and the palliative care nurses come later at night to give the clexane injections.

Wednesday 9th June 2010

Long distance news. Sally has returned home to Melbourne again. Helen had her CT Scans yesterday. The good news is - no actual evidence of tumour progression as in the cancer itself is no bigger and there are no new metastases to be seen. The fluid around the lung is still evident. The new bad thing is that she has large pulmonary emboli (clots) evident in the large vessels supplying both lungs. No actual lung infarction. This is due to the increased tendency for clotting in people with advanced cancer as well as to her relative immobility. It is something that could kill her quickly - sort of at any time - but I guess this has been on the cards for a while whether there was something abnormal seen on tests or not. On the other hand - it may not and it probably isn't affecting how she feels right now. If she gets more or they block of parts of her lung it will make her short of breath so for the time being the doctors are restarting her on preventative anticoagulation injections (she used to have these in hospital way back last year). Not too sure whether they'll suggest continuing with the chemo or not - a question for next week.

The other good news is she is being discharged today back to her house in The Gardens. She and Louis will be on their own there for a few days, then my cousin Jamie is visiting and then I will return next week. They will have twice daily carer/nursing visits and Louis says he is really happy with how they've set the house up for her to be in. Darwin friends planning to visit - call Louis if you like but I don't think they'll be going out much so I'd say you could just drop in. Interstate friends - the house is big and beautiful with lots of room and there are nearby hotels and things as well. I gather the Dry Season has come back while I've been away and it's a much more pleasant temperature now.

Tuesday 8th June

This is Sally's last day in Darwin. It sounds like it has been a wonderful visit for Helen and certainly the most fantastic thing for me and Louis to have her up there. Barbara came up for the weekend while Louis was out at Daly River Meperren Festival and now he is back and will be on his own until Jamie arrives on the weekend. I am still in Brisbane working - should be back in Darwin early next week.
Helen is due to have the oft-deferred prognosis determining CT scans today.
I spoke to her on the weekend and she was pretty good but I gather both Friday last week and yesterday she was very quiet and tired all day and not so good. Her mobility and function still vary a lot. Apparently we have been approved for another enhanced home nursing package via ACAT so the plan is to trial discharging her to her home with Louis before the long weekend. I'm not so sure this is a good idea but...I'm not there. I certainly do want to have her at her own house again and so does Louis...and so does Helen!
Anyway...we'll see.

Thursday 3rd June 2010

News from the North. Louis says he and Sally have been having a great time with Helen. Sally has been having great success with encouraging Helen to eat a little more and Louis has been reading out loud to her. Yesterday I gather they had ACAT assessment again which went well and we should be approved for more home nursing care when a "package" becomes available.
The CT Scans did not happen in the end owing to intrahospital confusion but this is still the intention. Louis tells me some palliative care equipment - hospital bed etc arrived at Helen's home in Darwin today. For the time being they intend to keep her in the hospice until it is possible to discharge her to home in Darwin but I'm not sure how long this will be. Just in case of sudden pressure on hospice beds we are holding onto our place at Terrace Gardens for now. Unfortunately Helen's Palmerston friend Kaye has been called way for personal reasons - and she was the main plus of Palmerston! I'm glad she and Helen had such good times together before Kaye had to go.
Other visitors recently have included Bilha and Jazzi - and probably more I don't know about.
Louis tells me Helen is really enjoying seeing people.

Tuesday 1st June 2010

Sally tells me she and Helen had a great day together yesterday. The weather has shifted to be a bit more "dry season" and they were able to spend some time outside together enjoying the air, the birds and the breeze.
Medically things sound fairly stable - Sally says she was quite lucid most of the day and ate with enjoyment. The only negative was she had a day where she was quite "stiff" again - stiff arms and legs and gritted teeth which is tiring and make it hard for her to walk and even for others to move her around.
Blood tests are still awaited, CT scans are booked for tomorrow as is ACAT reassessment with a view to getting more home nursing care options in Darwin. Louis flies up late tonight and will be around for those things tomorrow.