Lots of changes in the last week - although not in Helen herself. She remains off her anticancer drug and the itch has mostly resolved. She is in no pain or discomfort. Sleeps a fair bit. Enjoys her food - but needs to be something she likes and needs to be fed. Sometimes still sings and hums to herself.
Regular visits from Kaye and Shirley, the occasional visitor from far away - Camille, Gabe (my new housemate), and Louis has been here for a week and is spending many hours with her a day.
Over the weekend Louis and I tried to fill in the forms for the Pearl Nursing Home in Darwin but as we talked we began to revisit the idea of moving her interstate.
Basically if she stays in Darwin I will remain the primary person. There are two major problems with that - I have plans to be away from Darwin for most of October and November (a combination of work and personal travel including organising a fabulous 40th for myself and participating in the Natimuk Frinj) plus - in general - I am not going so well emotionally and I can't face the idea of being Helen's main person supervising and supporting the care in the Nursing Home at this stage. That brought us to considering Melbourne and Brisbane again. Louis is very committed to his life in Brisbane and although we know Helen would love more contact with her siblings who are all Melbourne based we have decided to pursue Brisbane in the first instance. I am sad about letting her go. Sad too that she won't have Kaye and Shirley in her life as she has done but on the other hand - I can step back to being the less responsible intermittent visitor and focus on the rest of my life a bit, the Brisbane summer will be more comfortable than either the Darwin BuildUp/Wet or the Melbourne half-summer and she will love seeing Louis regularly. Other Brisbane friends may agree to join a roster of visits too - Louis is going to start thinking about this.
Renting out rooms in her Darwin house will help to pay for the nursing home costs in Brisbane - the place we are looking at has "extra service" beds so we need a bond etc but it does seem as if it is quite well staffed and resourced. Louis and I visited it together last Easter and were impressed that they had fertile eggs hatching into baby chickens for the residents' amusement.
I can visit Brisbane, and so can other family and friends from down South and as Louis points out it is a shorter flight and a bit cheaper than getting to Darwin.
At this stage we are working toward discharge and transfer (with one of us as escort) on ~ the 12th September. I hope Kaye will be back by then.
Monday, August 29, 2011
Sunday, August 21, 2011
Sun 21st 2011
This morning Stuart, Michael and I visited Helen. We shared poetry and anecdotes, a hot chocolate and massaged her arms and legs with yummy oils and moisturisers. She said her itch was not bothering her. Her L foot was quite swollen (it's the L leg that probably has a deep vein thrombosis). We brought her mangos (new season) which she liked the idea of but wasn't ready to eat so they stayed in the fridge. She said she'd been looking forward to seeing them and it was a warm and lucid morning.
Saturday, August 20, 2011
Saturday 20th August
Several days run together...
On Thursday Helen's fried Camille (previously of Darwin but now of Brisbane) visited and read poetry and spoke with her for several hours. Helen remembered the visit when I saw her on Friday and had really enjoyed it. Unfortunately Helen's itchy skin has continued to be a problem - which it was when we first started the Iressa. The ward round Friday morning happened to be with Dr M who is the palliative care doctor we first met when Helen was diagnosed and whom we have had the most to do with. She and I talked the options through and have decided to trial stopping the Iressa again. My only reasons for staying on it are that in the last few weeks of restarting Iressa she has really improved mentally and most of the "para-neoplastic" weird things have resolved. She (and we) find the bizarre cancer side effects distressing. However, it is possible that the mental improvement is down to treating her UTI, the itch is really unpleasant and has not responded to the anti-itch drug we used to use and we just don't know with the weird para-neoplastic thingies so...seems worth ceasing it again, especially while she is still in hospital and can have bloods to monitor her sodium etc.
The other medical/nursing issues I have referred to...she has started on a treating dose of Clexane again (which is the daily injection of a blood thinner she used to have before). In itself this doesn't bother her - or so she always says - but I am in two minds about whether she should stay on it as she has 2 skin tears at the moment and both are continuing to bleed a bit. She is still on oral steroid but at least back on the dose she used to have at home (they doubled it when she came in to hospital. As far as her mobility goes and the idea of rehab - it is not good news. The rehab physician came to assess her and found her cognitive capacity too low to imagine she would be able to get any benefit out of a rehab program - mainly due to memory issues. I actually agree with this and it is part of what was not-so-good when she had her rehab at the Epworth. A big improvement initially due to increased activity and concomitant increased strength but no capacity to retain and build on this improvement on her own without someone else (e.g. me) standing by as coach. Also it was pretty well impossible to stop the carers from dressing her and washing her and drying her...and often wheeling her to the toilet rather than assisting her to walk.
Currently Helen is rarely helped from bed and the nurses have asserted to be on several occasions that it takes three of them and is not safe for them or for Helen. When I heard that on Thursday I asked if I could help/see what the problems were. The nurse I spoke to wasn't up for that - I think she was more interested in letting me know that they weren't keen to move her anymore - I felt quite upset and angry and had to ask her not to talk to me about this anymore. I think I was having flashback emotional fallout from other times when she has deteriorated through what I perceive as poor care and neglect, distress at her current physical state and deterioration and just a general melt-down owing to the last week or so of feeling stressed and trying to be Helen's advocate again. After I got over this I went down to Helen's room and got her out of bed on my own and popped her in the shower chair. I didn't strain my back. I didn't hurt Helen. Her nightie was stained with blood and food and she had pretty much only had bed baths since arriving in hospital so I thought a real shower would be good. i also wanted to see for myself what the problems/issues are with her mobility.
There are 3 main issues - all due to being allowed to lie in bed for 2 weeks as far as I'm concerned. Her achilles tendons have tightened again so her feet cannot bend to 90 degrees. This means that standing is very hard as her centre of gravity is pushed back and she tends to respond to this by leaning away from you with all her weight. Her overall strength - in legs and core is decreased - balance is harder in any case as she has not even being sitting in a wheelchair let alone walking. Weakness in her legs also makes standing more difficult and she has a tendency to try to do this with bent legs which actually makes it harder - like doing a partial squat exercise. Stamina is obviously very poor. Finally she became fairly breathless as I transferred her and then when she actually had her shower was somewhat confused. The nurse (same one from before) and I showered her together, cleaned her skin tear, and shampooed her hair then rubbed in moisturisers and creams. Helen enjoyed it all as a sensual experience and was much cleaner at the end. However she did tell me "she wanted to let me know what she had won" and also told both me and the nurse that we should"go and look at the place where the number plate goes, on the front, on any car!" When we asked what we were looking for she said "I think it will hit you in the eye when you have a look" a phrase which caused the nurse some puzzlement until I translated.
After the shower she was tucked comfortably into bed for a sleep as she was exhausted. But the process of transferring back to bed was much harder than getting her out (partly due to tiredness and partly due to the "too many cooks" phenomenon).
The upshot of all this is I am prepared to accept the rehab physician's assessment and the nurse's assessment and...Helen's personal preference to stay in bed. I hope that we can manage to organise/provide good enough nursing care that her skin remains healthy and she doesn't deteriorate too rapidly.
The next step if she lives more than a few weeks will be transfer to a nursing home. Helen, Louis and I are all accepting of this and there is a pleasant new one nearby the Gardens. The biggest downside from my point of view is the staffing ratios (very light on I gather) and the food. Helen is eating so much less quantity, quality and lower deliciousness food since leaving her home and her personalised care with Jo and Susan. It does seem a shame. I have been thinking perhaps Jo will agree to some more part time work and "special" her at the home but will leave this for now as it is all unclear what is to happen next. For now she will go on as she has done and certainly the nursing care in the hospice is far and away the best we have had in any of our various hospital and nursing home stays. So despite my complaints above we will continue to appreciate it as best we can.
This weekend Susan and Freckles have left our household to return to their lives in Castlemaine. A sad time for all of us in many ways. My new housemate Gabe and her baby Tenzin came to visit Helen with me on Friday morning. Tenzin is 10 months old and a charming babe. Helen enjoyed meeting him and expressed welcome to Gabe and her family. This weekend my friends Stuart and Michael are visiting for a few nights from Qld and we will all spend some time with Helen on Sunday morning.
Next week I will be away for five days and Louis will arrive on Tuesday.
On Thursday Helen's fried Camille (previously of Darwin but now of Brisbane) visited and read poetry and spoke with her for several hours. Helen remembered the visit when I saw her on Friday and had really enjoyed it. Unfortunately Helen's itchy skin has continued to be a problem - which it was when we first started the Iressa. The ward round Friday morning happened to be with Dr M who is the palliative care doctor we first met when Helen was diagnosed and whom we have had the most to do with. She and I talked the options through and have decided to trial stopping the Iressa again. My only reasons for staying on it are that in the last few weeks of restarting Iressa she has really improved mentally and most of the "para-neoplastic" weird things have resolved. She (and we) find the bizarre cancer side effects distressing. However, it is possible that the mental improvement is down to treating her UTI, the itch is really unpleasant and has not responded to the anti-itch drug we used to use and we just don't know with the weird para-neoplastic thingies so...seems worth ceasing it again, especially while she is still in hospital and can have bloods to monitor her sodium etc.
The other medical/nursing issues I have referred to...she has started on a treating dose of Clexane again (which is the daily injection of a blood thinner she used to have before). In itself this doesn't bother her - or so she always says - but I am in two minds about whether she should stay on it as she has 2 skin tears at the moment and both are continuing to bleed a bit. She is still on oral steroid but at least back on the dose she used to have at home (they doubled it when she came in to hospital. As far as her mobility goes and the idea of rehab - it is not good news. The rehab physician came to assess her and found her cognitive capacity too low to imagine she would be able to get any benefit out of a rehab program - mainly due to memory issues. I actually agree with this and it is part of what was not-so-good when she had her rehab at the Epworth. A big improvement initially due to increased activity and concomitant increased strength but no capacity to retain and build on this improvement on her own without someone else (e.g. me) standing by as coach. Also it was pretty well impossible to stop the carers from dressing her and washing her and drying her...and often wheeling her to the toilet rather than assisting her to walk.
Currently Helen is rarely helped from bed and the nurses have asserted to be on several occasions that it takes three of them and is not safe for them or for Helen. When I heard that on Thursday I asked if I could help/see what the problems were. The nurse I spoke to wasn't up for that - I think she was more interested in letting me know that they weren't keen to move her anymore - I felt quite upset and angry and had to ask her not to talk to me about this anymore. I think I was having flashback emotional fallout from other times when she has deteriorated through what I perceive as poor care and neglect, distress at her current physical state and deterioration and just a general melt-down owing to the last week or so of feeling stressed and trying to be Helen's advocate again. After I got over this I went down to Helen's room and got her out of bed on my own and popped her in the shower chair. I didn't strain my back. I didn't hurt Helen. Her nightie was stained with blood and food and she had pretty much only had bed baths since arriving in hospital so I thought a real shower would be good. i also wanted to see for myself what the problems/issues are with her mobility.
There are 3 main issues - all due to being allowed to lie in bed for 2 weeks as far as I'm concerned. Her achilles tendons have tightened again so her feet cannot bend to 90 degrees. This means that standing is very hard as her centre of gravity is pushed back and she tends to respond to this by leaning away from you with all her weight. Her overall strength - in legs and core is decreased - balance is harder in any case as she has not even being sitting in a wheelchair let alone walking. Weakness in her legs also makes standing more difficult and she has a tendency to try to do this with bent legs which actually makes it harder - like doing a partial squat exercise. Stamina is obviously very poor. Finally she became fairly breathless as I transferred her and then when she actually had her shower was somewhat confused. The nurse (same one from before) and I showered her together, cleaned her skin tear, and shampooed her hair then rubbed in moisturisers and creams. Helen enjoyed it all as a sensual experience and was much cleaner at the end. However she did tell me "she wanted to let me know what she had won" and also told both me and the nurse that we should"go and look at the place where the number plate goes, on the front, on any car!" When we asked what we were looking for she said "I think it will hit you in the eye when you have a look" a phrase which caused the nurse some puzzlement until I translated.
After the shower she was tucked comfortably into bed for a sleep as she was exhausted. But the process of transferring back to bed was much harder than getting her out (partly due to tiredness and partly due to the "too many cooks" phenomenon).
The upshot of all this is I am prepared to accept the rehab physician's assessment and the nurse's assessment and...Helen's personal preference to stay in bed. I hope that we can manage to organise/provide good enough nursing care that her skin remains healthy and she doesn't deteriorate too rapidly.
The next step if she lives more than a few weeks will be transfer to a nursing home. Helen, Louis and I are all accepting of this and there is a pleasant new one nearby the Gardens. The biggest downside from my point of view is the staffing ratios (very light on I gather) and the food. Helen is eating so much less quantity, quality and lower deliciousness food since leaving her home and her personalised care with Jo and Susan. It does seem a shame. I have been thinking perhaps Jo will agree to some more part time work and "special" her at the home but will leave this for now as it is all unclear what is to happen next. For now she will go on as she has done and certainly the nursing care in the hospice is far and away the best we have had in any of our various hospital and nursing home stays. So despite my complaints above we will continue to appreciate it as best we can.
This weekend Susan and Freckles have left our household to return to their lives in Castlemaine. A sad time for all of us in many ways. My new housemate Gabe and her baby Tenzin came to visit Helen with me on Friday morning. Tenzin is 10 months old and a charming babe. Helen enjoyed meeting him and expressed welcome to Gabe and her family. This weekend my friends Stuart and Michael are visiting for a few nights from Qld and we will all spend some time with Helen on Sunday morning.
Next week I will be away for five days and Louis will arrive on Tuesday.
Thursday, August 18, 2011
Wednesday August 17th
Tests came back on Tuesday showing multiple clots in Helen's lungs so as planned she has restarted on blood thinning injections.
Susan visited later that day and found Helen in good spirits and lucid although having the odd element of confusion between dream states and reality as evinced by her request that Susan assure Louis that she has bought some chickens for Auchenflower now and they're waiting at home for him...
Susan visited later that day and found Helen in good spirits and lucid although having the odd element of confusion between dream states and reality as evinced by her request that Susan assure Louis that she has bought some chickens for Auchenflower now and they're waiting at home for him...
Monday, August 15, 2011
A medical update
Helen is still in Hospice. She and I had a very frank conversation this morning about death and dying. She has been quite lucid over the last 3-4 days (presumably as a result of them treating her UTI)...she is still sleepy and easily tired but much more withit and rational and answers/converses appropriately.
I initiated the conversation this morning because of 3 things: her immobility - likely to lead to lung collapse, pneumonia, skin breakdown and clots in legs and lungs, the anti cancer drug Iressa seems to be causing an itch again which is unpleasant for her but it also seems to be working interms of stopping all the yukky para-neoplastic phenomena and finally because when I went to rub some oil into her legs and feet I noticed her L calf was quite a bit bigger than her R and quite a bit bigger than it was a few days ago. To my mind this means a deep vein thrombosis in that leg is very likely. The other trigger for talking about it (apart from treatment decisions) is that a number of people have commented to me that they think her reluctance to get up, to sit, to move around or try walking are signs that she has "given up fighting" and is ready to let herself die.
When I suggested this to Helen she was quite shocked. She says she is not ready to die although it's true that she doesn't want to do anything in particular and is enjoying resting quietly and enjoying her visitors.
I outlined possibilities such as having further tests on her leg or lungs, having blood-thinning injections again, taking tablets, stoppin her anti-cancer drug to relieve the itch but potentially having more para-neoplastic phenomena emerge. She was clear that she does not mind tests, tablets or needles and clear that she wants active treatment to continue.
I asked her what comes to her mind when she thinks about death or about dying. She said she thinks about the funeral and about what a lovely job Tim (my cousin by marriage) did of organising/speaking at her mother's.
I asked her whether she would like me to ask Tim to speak at her funeral and again she reacted with shock and said "I'm not at that stage yet!".
So...the process continues.
Helen's friend Shirley came for a visit while I was there and showed me a beautiful pencil portrait she has been doing of Helen - still in progress but looking lovely. Shirley feels it is a sad image but I didn't find it so.
The ward round happened while I was there so we spoke with Dr A about all of the above. She thinks a pulmonary embolus/DVT is fairly likely and Helen will have a test soon to find out if this is true - if so probably will restart on Clexane injections. As far as the Iressa and itch goes her skin looks much better despite the itch and I think we will continue with soothing creams and some night time anti itch medication. Apparently the rehab team are interested is a "restorative" admission but this will go on hold till they sort out the leg/lung issues.
Next week I will be away for work for 6 days and Susan will have returned to Victoria so hopefully Louis will be back and able to visit her. This week I am taking a fair bit of time off work and will go out to hospice as often as I can.
I initiated the conversation this morning because of 3 things: her immobility - likely to lead to lung collapse, pneumonia, skin breakdown and clots in legs and lungs, the anti cancer drug Iressa seems to be causing an itch again which is unpleasant for her but it also seems to be working interms of stopping all the yukky para-neoplastic phenomena and finally because when I went to rub some oil into her legs and feet I noticed her L calf was quite a bit bigger than her R and quite a bit bigger than it was a few days ago. To my mind this means a deep vein thrombosis in that leg is very likely. The other trigger for talking about it (apart from treatment decisions) is that a number of people have commented to me that they think her reluctance to get up, to sit, to move around or try walking are signs that she has "given up fighting" and is ready to let herself die.
When I suggested this to Helen she was quite shocked. She says she is not ready to die although it's true that she doesn't want to do anything in particular and is enjoying resting quietly and enjoying her visitors.
I outlined possibilities such as having further tests on her leg or lungs, having blood-thinning injections again, taking tablets, stoppin her anti-cancer drug to relieve the itch but potentially having more para-neoplastic phenomena emerge. She was clear that she does not mind tests, tablets or needles and clear that she wants active treatment to continue.
I asked her what comes to her mind when she thinks about death or about dying. She said she thinks about the funeral and about what a lovely job Tim (my cousin by marriage) did of organising/speaking at her mother's.
I asked her whether she would like me to ask Tim to speak at her funeral and again she reacted with shock and said "I'm not at that stage yet!".
So...the process continues.
Helen's friend Shirley came for a visit while I was there and showed me a beautiful pencil portrait she has been doing of Helen - still in progress but looking lovely. Shirley feels it is a sad image but I didn't find it so.
The ward round happened while I was there so we spoke with Dr A about all of the above. She thinks a pulmonary embolus/DVT is fairly likely and Helen will have a test soon to find out if this is true - if so probably will restart on Clexane injections. As far as the Iressa and itch goes her skin looks much better despite the itch and I think we will continue with soothing creams and some night time anti itch medication. Apparently the rehab team are interested is a "restorative" admission but this will go on hold till they sort out the leg/lung issues.
Next week I will be away for work for 6 days and Susan will have returned to Victoria so hopefully Louis will be back and able to visit her. This week I am taking a fair bit of time off work and will go out to hospice as often as I can.
Friday, August 12, 2011
A quote from Helen
Yesterday Dave spent the day at Hospice with Helen and it sounds like she had a pretty good day - ate well and was pretty alert and lucid most of the time.
A notable quote "Some people might think otherwise...but...I...don't want to go anywhere else!"
A notable quote "Some people might think otherwise...but...I...don't want to go anywhere else!"
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