We did manage to have Helen at home at her own house overnight on Saturday - it went really well. She loved being there and slept on a little mattress in the living room within easy sight of the garden and sound of the birds. Sally and Tim and I sat round and chatted with her and each other and we all watched an episode of Rumpole together Saturday night. Sunday morning her friend Lyn G from Sydney visited - she and Helen have been friends since Uni days and it was great she could come and see Helen's lovely house. After this Tim and I took Helen back to the Hospice where I know a few other friends had planned to visit and Tim and Sally were going back later in the day. Tim was in high hopes of finding a DVD of Hitchcock's Rebecca to watch with Helen - apparently this is his favourite movie of all time and is his main trigger to knowing he is on holidays! Both Tim and Sally said they had really good sleeps in Darwin so hopefully there is some sense of refreshment for them too.
This next 10-14 days I am back in Brisbane doing a locum which I had organised previously when we were all in Brisbane. Louis plans to return to Darwin ~ Wed this week. Helen sounds to me as though she is really very happy to be there and her main caveat is wanting us to be there too so I think that is probably what we will try to manage.
Helen's friend Kaye is away until the 12th and as I think I said before her sister Sally is around until the 8th. I expect Helen to stay in the Hospice at RDH for most of this week - they plan to finish doing bloods, consider doing her CT scans earlier and possibly drain fluid from her lung. Hopefully we will have the equipment at the Gardens after this and also her bed at Terrace Gardens will still be available. The Hospice is a lovely place to be in any case. Visitors are really welcome and there are no restrictions on hours. Helen has asked me to tell people it is OK to wake her up if you come when she is asleep - she has no problem sleeping again anytime! She does get lonely at night sometimes so evening visits are also welcome. If you are visiting when there is food around please encourage her to eat/feed her.
Monday, May 31, 2010
Saturday, May 29, 2010
Saturday 29th May 2010
Sally and Tim arrived yesterday. Helen is still in the Hospice and likely to stay here until next Thursday at least. She had 2 units of blood transfused on Thursday this week and yesterday and today does seem less breathless and tired. There is still some discussion of her having her lung fluid drained again on Monday. Yesterday I met the palliative OT at Helen's house and organised to borrow equipment necessary to having her at home again - hopefully this will all be available next week. Her respite bed at Palmerston is still available but this will have to be reassessed depending how things go.
I plan to go to Brisbane this weekend for a break and to do some work. Sally will be the only person on deck until Wednesday when Louis plans to return. I think Sally will stay until the 8th or so and Louis hopes to be able to go to the Meperren Festival next weekend with his friends Stephanie.
This morning Sally and I are visiting Helen early (for breakfast) and leaving Tim to have a sleep in to recover from the late flight, next we plan to reconnect with him and hopefully pop in to Parap markets for brunch and vege shopping. Helen's friend Shirley plans to visit at lunch time and if Helen is up to it I hope to take her back to her house at the Gardens for the afternoon.
I plan to go to Brisbane this weekend for a break and to do some work. Sally will be the only person on deck until Wednesday when Louis plans to return. I think Sally will stay until the 8th or so and Louis hopes to be able to go to the Meperren Festival next weekend with his friends Stephanie.
This morning Sally and I are visiting Helen early (for breakfast) and leaving Tim to have a sleep in to recover from the late flight, next we plan to reconnect with him and hopefully pop in to Parap markets for brunch and vege shopping. Helen's friend Shirley plans to visit at lunch time and if Helen is up to it I hope to take her back to her house at the Gardens for the afternoon.
Wednesday, May 26, 2010
Wednesday 26th May 2010
This morning Helen had breakfast with Kaye (as she has done most mornings since she has been in Palmerston). Her friend Lyn G phoned to say she is coming up for a conference and hopes to be able to see Helen on Sunday. Shirley D came in mid morning and helped Helen with her lunch and they listened to a CD of Armin's music. Helen tried to intrigue Shirley to consider having a facial with her - Shirley being as inexperienced in such things as Helen was before she became so ill and I was able to take her hither and thither to do my bidding! We agreed it is an expensive thing to get a taste for but - but delightful nonetheless.Next we went to oncology outpatients to see Dr K. He said her Hb has dropped to 81 so planned a transfusion of 2 units plus thought it likely she may benefit from another pleural tap. These things are easier for them to do in hospital so we decided Helen would be admitted to the Royal Darwin Hospital Hospice tonight and be transfused in the morning. If they decide on the tap they will do that before she is discharged also. The hospice is a beautiful place - new, spacious, caring environment and very peaceful. Apart from the disorientation involved in moving around I am very happy to have Helen here and am in hopes that fine tuning her blood levels, increasing her food intake again and maybe taking some fluid off the lung will give her the chance to enjoy being in Darwin and spending time with her loved ones a bit more. The photo above is of a lovely intern called K putting in an IV for the transfusion tomorrow.
This evening we had planned to watch some Rumpole together but she is pretty tired - unsurprisingly - I am playing her some Peter and the Wolf and she has dropped off peacefully and I think I will leave the evening's entertainments at that.
Tuesday, May 25, 2010
Tuesday May 25th 2010
Helen was a bit better today - still weak and keen to spend the day in bed but less sleepy and apparently less breathless. She and I listened to an ABC radio show together - an interview with David Malouf - and she ate a reasonable lunch.
My other achievements for the day - made contact with a nurse counsellor at the Cancer Council, touched base with the Respite Care coordinator and clarified that her current admission will expire on the 10th June but it is possible to rebook until the 22nd. Spoke to palliative care and about OT assessment and borrowing equipment for the home, spoke to a private nursing provider about availability of nursing packages and cost to fund this privately if none are available. Bought a shredder so Helen and I can begin the satisfying task of disposing of her confidential documents...a treat for later in the week.
A highlight yesterday was talking with Helen and her friend Kaye about the possibility of publishing Helen's writing - So Many Versions of a Life and for the first time since she got depressed Helen was straightforwardly enthusiastic about this.
My other achievements for the day - made contact with a nurse counsellor at the Cancer Council, touched base with the Respite Care coordinator and clarified that her current admission will expire on the 10th June but it is possible to rebook until the 22nd. Spoke to palliative care and about OT assessment and borrowing equipment for the home, spoke to a private nursing provider about availability of nursing packages and cost to fund this privately if none are available. Bought a shredder so Helen and I can begin the satisfying task of disposing of her confidential documents...a treat for later in the week.
A highlight yesterday was talking with Helen and her friend Kaye about the possibility of publishing Helen's writing - So Many Versions of a Life and for the first time since she got depressed Helen was straightforwardly enthusiastic about this.
Monday, May 24, 2010
Monday 24th May 2010
Helen resting in the studio at her home.Helen and I had a pretty nice day together today although she was quite breathless, weak and sleepy.
In the morning her friend Kaye visited and fed her breakfast including Mango brought from home. Helen and I went back to her house in the garden. Her friends Peter and Lil came by to visit. I went to the hospital to book a CT scan and borrow a wheelchair. Helen watched another episode of Rumpole of the Bailey.
We are looking forward to Sally's arrival on Friday (Helen's youngest sister) and hoping the dry season may have come back by then - it continues very warm and humid!
Thursday, May 20, 2010
Thursday May 20 2010
Finally a written update and my apologies it has taken so long. First of all how is Helen? She continues to fluctuate mentally and physically - much as she was in Brisbane.
Sometimes her short term memory is amazingly absent, sometimes she is quite on the ball. Longer term memory things tend to be ok all the time. Her hearing has deteriorated over the last 6 months but we have finally had her hearing aids cleaned and adjusted which is a good thing. I have learnt a lot more about hearing aids in the last week - and about reasons for them to fail! Apparently weight loss and radiation contraction contribute to collapse of the ear canal and this means it is harder to get the little microphone to sit in space properly to transmit sound into air rather than abutting skin. Also the eustachian tube doesn't function so well after weight loss and changes to the pharynx so even sound that does get down the canal is not transmitted as well as before.
Over the last 2 days she has been more breathless than before and also tired. Her blood count is a bit down again which may be contributing but to my disappointment they did not give her a transfusion with the chemo. we'll have to see how she goes over the weekend. She also has a sore right arm which I hope is merely muscle strain and will resolve quickly. Otherwise sh is in pretty good spirits although it is sad for her and for us to leave her at Terrace Gardens when we have all been used to being together all the time.
Several of her Darwin friends have been traveling out to see her at Palmerston most days - particularly Kaye, Shirley and Marlene. Helen is enjoying these contacts and they are a great relief to Louis and me.
The place she is staying is a nursing home but the physical structure is a bit different/better than other nursing homes I have seen. It could be cleaner but it is the tropics! The carers are very friendly and do seem caring - I wish they wore name tags as Helen does really like to remember people's names and that's hard right now. The rooms are separated into small "pods" - little independent buildings with a nearby kitchen /dining/lounge area that only services a few people. Her room has an independent disabled access ensuite and windows and louvres on 3 sides and has its own airconditioner, fridge, TV and armchair for visitors. It opens out onto a little covered walkway. There are gardens around the paths, a resident grumpy dachshund, ducks and fish. To take her on a day outing we can drive the car around to the back entrance and then it is a short wheelchair trip from her room to the car and out into the world. Unfortunately Palmerston in a 20 minute drive from the part of Darwin where Helen normally lives and where many of her friends are based however it is only a short walk from Kaye's house which is great!
I think she is enjoying being here. It is certainly a better climate for her than Brisbane has to offer right now. There are still quite a few significant people we haven't touched base with yet so hopefully she will have the chance to catch up with more friends soon.
Today Louis is taking her to the Museum/Art Gallery for a walk/wheelchair cruise and then to Cornucopia for lunch followed by a visit to Kaye's house.
Yesterday we met the new Darwin oncologist - Dr K. He talked to us and Helen about going on with chemo. There was a great flash of the normal Helen when he was asking her whether she wanted to go on with it and she came back with "How can anyone make a proper decision about that? It's a medical decision. If you sound reassuring and tell me it's worthwhile I have to believe you and if you sound as if it's frightening then I have to believe that."
At this stage she has begun another "cycle" of her new chemo up here which went ok. A cycle goes for 3 weeks so at the end of that he suggests she have another CT scan to look at the tumor and for any further metastases and the pleural effusion and depending how that looks consider whether to go on with chemo or not. He was fairly clear with Louis and I that although he doesn't know how effective the chemo is being nor what aspects of her physical state are due to chemo side effects he would expect the cancer to become much more active and grow and spread when she does stop chemo. However at some stage he would suggest stopping it anyway when she becomes more frail/unwell or if there is evidence that the cancer is progressing anyway.
Tomorrow Louis will fly back to Brisbane for 2 weeks. My Aunt Sally arrives next Friday and in the interim it will be just me.
I had a meeting with the palliative care social worker today and she is helping start the process of accessing physical supports for Helen's home as well as being reassessed by ACAT for home nursing support. Hopefully we can get this in place soon and then it will be easier for her to visit home overnight even while she still has the respite bed in the nursing home.
If any Darwin friends are reading this and planning visits please phone me before you go in case I've taken her out somewhere so you don't have a wasted trip. If you are eating with her please do encourage her to eat - even at the level of spoon feeding - she has lost quite a bit of weight in the last few weeks and it is not helping anything. Readers from elsewhere thinking of writing - Louis will be checking mail in Brisbane so never fear - it will get here eventually. If you would like a darwin address to write to please contact me (I've realised that posting addresses on the internet is maybe not a good idea ;-))
If you are thinking of visiting...please do! Helen's house is big and beautiful and has lots of room for guests. Louis and I would love more people around who care about Helen
Sometimes her short term memory is amazingly absent, sometimes she is quite on the ball. Longer term memory things tend to be ok all the time. Her hearing has deteriorated over the last 6 months but we have finally had her hearing aids cleaned and adjusted which is a good thing. I have learnt a lot more about hearing aids in the last week - and about reasons for them to fail! Apparently weight loss and radiation contraction contribute to collapse of the ear canal and this means it is harder to get the little microphone to sit in space properly to transmit sound into air rather than abutting skin. Also the eustachian tube doesn't function so well after weight loss and changes to the pharynx so even sound that does get down the canal is not transmitted as well as before.
Over the last 2 days she has been more breathless than before and also tired. Her blood count is a bit down again which may be contributing but to my disappointment they did not give her a transfusion with the chemo. we'll have to see how she goes over the weekend. She also has a sore right arm which I hope is merely muscle strain and will resolve quickly. Otherwise sh is in pretty good spirits although it is sad for her and for us to leave her at Terrace Gardens when we have all been used to being together all the time.
Several of her Darwin friends have been traveling out to see her at Palmerston most days - particularly Kaye, Shirley and Marlene. Helen is enjoying these contacts and they are a great relief to Louis and me.
The place she is staying is a nursing home but the physical structure is a bit different/better than other nursing homes I have seen. It could be cleaner but it is the tropics! The carers are very friendly and do seem caring - I wish they wore name tags as Helen does really like to remember people's names and that's hard right now. The rooms are separated into small "pods" - little independent buildings with a nearby kitchen /dining/lounge area that only services a few people. Her room has an independent disabled access ensuite and windows and louvres on 3 sides and has its own airconditioner, fridge, TV and armchair for visitors. It opens out onto a little covered walkway. There are gardens around the paths, a resident grumpy dachshund, ducks and fish. To take her on a day outing we can drive the car around to the back entrance and then it is a short wheelchair trip from her room to the car and out into the world. Unfortunately Palmerston in a 20 minute drive from the part of Darwin where Helen normally lives and where many of her friends are based however it is only a short walk from Kaye's house which is great!
I think she is enjoying being here. It is certainly a better climate for her than Brisbane has to offer right now. There are still quite a few significant people we haven't touched base with yet so hopefully she will have the chance to catch up with more friends soon.
Today Louis is taking her to the Museum/Art Gallery for a walk/wheelchair cruise and then to Cornucopia for lunch followed by a visit to Kaye's house.
Yesterday we met the new Darwin oncologist - Dr K. He talked to us and Helen about going on with chemo. There was a great flash of the normal Helen when he was asking her whether she wanted to go on with it and she came back with "How can anyone make a proper decision about that? It's a medical decision. If you sound reassuring and tell me it's worthwhile I have to believe you and if you sound as if it's frightening then I have to believe that."
At this stage she has begun another "cycle" of her new chemo up here which went ok. A cycle goes for 3 weeks so at the end of that he suggests she have another CT scan to look at the tumor and for any further metastases and the pleural effusion and depending how that looks consider whether to go on with chemo or not. He was fairly clear with Louis and I that although he doesn't know how effective the chemo is being nor what aspects of her physical state are due to chemo side effects he would expect the cancer to become much more active and grow and spread when she does stop chemo. However at some stage he would suggest stopping it anyway when she becomes more frail/unwell or if there is evidence that the cancer is progressing anyway.
Tomorrow Louis will fly back to Brisbane for 2 weeks. My Aunt Sally arrives next Friday and in the interim it will be just me.
I had a meeting with the palliative care social worker today and she is helping start the process of accessing physical supports for Helen's home as well as being reassessed by ACAT for home nursing support. Hopefully we can get this in place soon and then it will be easier for her to visit home overnight even while she still has the respite bed in the nursing home.
If any Darwin friends are reading this and planning visits please phone me before you go in case I've taken her out somewhere so you don't have a wasted trip. If you are eating with her please do encourage her to eat - even at the level of spoon feeding - she has lost quite a bit of weight in the last few weeks and it is not helping anything. Readers from elsewhere thinking of writing - Louis will be checking mail in Brisbane so never fear - it will get here eventually. If you would like a darwin address to write to please contact me (I've realised that posting addresses on the internet is maybe not a good idea ;-))
If you are thinking of visiting...please do! Helen's house is big and beautiful and has lots of room for guests. Louis and I would love more people around who care about Helen
Tuesday, May 18, 2010
Helen at Terrace Gardens May 2010 and at home in Darwin
Helen in her room in the Gardenia Section at Terrace Gardens Nursing Home - Respite bed.
Helen trying on hats with her friend Lil at her home in the Gardens
Thursday, May 13, 2010
Thursday 13th May 2010
We're in Darwin!
So far so good. Helen and Louis and I flew to Darwin this morning and were met at the airport by her friends Bilha and Lil. We had a lovely sendoff in Brisbane last night with Peta, Sarah and Julie so life is feeling quite social. So far we have gone straight to her Darwin house in the Gardens and Helen is having a lie down in her studio.
Next we plan to go out to Terrace Gardens in Palmerston where we have a respite bed booked and hopefully get through admission without too much drama. we have brought all Helen P's beautiful cards with it to brighten up her room.
Helen's house is looking lovely - many thanks to Lil especially for all her care of it.
A good friend of ours will be clearing mail in Brisbane and can forward things up to us but an important point is that people who want to write directly should address mail to Louis rather than Helen or I as we both have redirections on our names from Helen's Darwin addresses.
when I find out the arrangements for writing/phoning at Terrace Gardens I will post them here.
So far so good. Helen and Louis and I flew to Darwin this morning and were met at the airport by her friends Bilha and Lil. We had a lovely sendoff in Brisbane last night with Peta, Sarah and Julie so life is feeling quite social. So far we have gone straight to her Darwin house in the Gardens and Helen is having a lie down in her studio.
Next we plan to go out to Terrace Gardens in Palmerston where we have a respite bed booked and hopefully get through admission without too much drama. we have brought all Helen P's beautiful cards with it to brighten up her room.
Helen's house is looking lovely - many thanks to Lil especially for all her care of it.
A good friend of ours will be clearing mail in Brisbane and can forward things up to us but an important point is that people who want to write directly should address mail to Louis rather than Helen or I as we both have redirections on our names from Helen's Darwin addresses.
when I find out the arrangements for writing/phoning at Terrace Gardens I will post them here.
Monday, May 10, 2010
Monday 10th May 2010
Carol and David have been visiting which is lovely. Here is a few thoughts from them (they hadn't seen Helen for a while) :
We arrived yesterday and have spent a pleasant night and day with Helen, which we are now completing by playing an enjoyable game of scrabble prior to training and busing off to Buderim.
This time last week we were enjoying Darwin. Originally Helen was to celebrate her 70th at the beginning of Darwin's winter. And what fun! Markets and heat and friends of Helens. Hello to Lil - thank you for all the things you and Yvonne did to make our time less stressful, and hello to Peter from Absolutely book shop. All your warm wishes were given to Helen in Brisbane. Cheers Carol & Dave x
We arrived yesterday and have spent a pleasant night and day with Helen, which we are now completing by playing an enjoyable game of scrabble prior to training and busing off to Buderim.
This time last week we were enjoying Darwin. Originally Helen was to celebrate her 70th at the beginning of Darwin's winter. And what fun! Markets and heat and friends of Helens. Hello to Lil - thank you for all the things you and Yvonne did to make our time less stressful, and hello to Peter from Absolutely book shop. All your warm wishes were given to Helen in Brisbane. Cheers Carol & Dave x
Tuesday, May 4, 2010
Tuesday 4th May 2010
Well, Helen came out of hospital last Thursday. Both Louis and I have found it a bit shocking that she is so physically debilitated since she was admitted. I think I had imagined that as she was in a rehab war with daily access to physio that she would at least maintain her capacity to walk and stand if not improve a little. In fact she is much much worse. I think this is cognitive as well as physical as she has really lost a consistent sense of herself in space which makes balance almost impossible. She tends to lean back when she tries to walk which makes forward progression difficult and falling likely. Things continue to fluctuate even with this and sometimes she's not too bad. Despite the physical deterioration she has been pretty good mentally up until the last 2 days and able to converse sensibly and remember all sorts of things.
For Louis and me the big impact of her decreased physical capacity is she is not able to toilet independently and this is hard for all of us. I think we will definitely need more nursing help in the near future whether that is at home or in a facility. The question of where that is needs to be considered more. Doug has been visiting which has been fun for Helen (and us). He is great at feeding her and has taken her on a few outings. He really agrees that it is worthwhile trying to get her to Darwin soon if it is at all possible so Louis and I need to have a serious think about that. Darwin Wordstorm starts next week - one of Mum's favourite events in the year. It would be great if she was fit enough to go to the odd event.
For Louis and me the big impact of her decreased physical capacity is she is not able to toilet independently and this is hard for all of us. I think we will definitely need more nursing help in the near future whether that is at home or in a facility. The question of where that is needs to be considered more. Doug has been visiting which has been fun for Helen (and us). He is great at feeding her and has taken her on a few outings. He really agrees that it is worthwhile trying to get her to Darwin soon if it is at all possible so Louis and I need to have a serious think about that. Darwin Wordstorm starts next week - one of Mum's favourite events in the year. It would be great if she was fit enough to go to the odd event.
Monday, May 3, 2010
Subscribe to:
Posts (Atom)