Yesterday we were able to see Dr P___ the very excellent palliative care specialist whom Peter has been seeing for over 18 months and who knows him very well. Peter trusts him absolutely and he has shown himself to be, time and again, the very best doctor we have encountered. His knowledge is huge, his capacity to patiently explain things is boundless and his compassion, friendliness and support has been second to none.
Peter's first question was "Can I fight this and recover or is it going to be the end?" Dr P said there was a very slender possibility that Peter could recover from the pneumonia but that the likelihood was that this would be his terminal illness.
I asked whether he could be saved if he showed signs of improvement and DR P said yes, which was a relief to me that the course of action could be changed if there was that miracle.
Peter said: "You said a long time ago that if the time came you could help me by making things painless, panic and anxiety free and you could keep my airways clear so I wouldn't suffocate or choke. Can you do that for me"" Dr P said that if that was what he wanted then it was not only Peter's right to have that care but it would be Dr P's personal honour to assist him to do so. peter said he didn't want to die but if he had to then he wanted to "drift off" as if gently going to sleep.
Dr P said he could do that and more to help Peter and that the best thing was for him to be moved to the hospice where he, Dr P, would also be on duty for the next 2 weeks. Suddenly we both felt marginally better. Me, because the struggle with the Intensivists to keep Peter going and to see him as more than just his illnesses on paper has been taken over by an excellent and caring doctor who will do whatever he can; and Peter because I think he trusts Dr P implicitly. Peter said to me after his first meeting with Dr P early in 2008 "If his is the last face I ever see, I will be happy". At the time I thought: "That's a relief to finally find a doctor who is so good and caring and will be here if we come to that point". I am so glad that Dr P has just come back from leave yesterday and so should be able to be with us throughout this period.
So Peter will be moving to Clare Holland House after 9am today sometime, having medications through the Peg tube again and I hope that he can be kept hydrated enough with that, despite the leakage problems we have been experiencing. I am going to ask Dr P if we can introduce some of Peter's liquid food again, even tiny amounts, as I am physically ill to think that he may end up dehydrated and starved, as I want to grab that slim chance that we can revive him. I know that there is still the cancer to answer to but this may have a tiny chance to be beaten and I want to do every single thing in my power to grab it if it comes within reach.
Will update again as soon as I can.
Leanne
Tuesday, August 04, 2009
Sunday, August 02, 2009
Bad News
Peter has come towards the end of his journey and I weep while writing this at his hospital chair side. Today the Intensivist said that while he has made some progress that he hasn't improved as much as they had hoped and that he is getting weaker.
We have had a very harrowing discussion - Peter, the Intensivist(a good one who has been on for the last 4 days and has taken a lot of time to talk with us) and I - I can't see why they can't keep actively treating him but the doctor says that she can see he is battling but not winning.
Peter is so tired, he says he just wants to drift away as painlessly and comfortably as possible now. I have found this too difficult to bear as he has come through other fights!! I know how he has shown them before that they were wrong but he seems to have lost his strength now. He said this morning: "I feel like I have come to the end of my rope". He is also getting more anxious and distressed, and so Valium and morphine are being used in small regular doses to help as I think it is all too much for him - he is very scared. Soon they will end his intravenous feeding and revert to fluids only (glucose and water intravenously).
This weekend is our 16th anniversary of being together. Today is our 4-week anniversary of being married.
They say he may only last a few more days, maybe not through to this time next week. I have tried so hard to keep him with me over the past 5 and 1/2 years and nothing I do now seems to be able to convince the doctors, and now Peter, that there is hope still. They are telling me there is none and that Pseudonmonas pneumonia is very life threatening and with his cancer and the chemotherapy the risk factors are even higher.
It is 2.07pm Sunday 2 August and they have just switched off his food intravenously and are now putting up the glucose fluids. He is still on one antibiotic. This is the beginning of the end I think. He is awake but a little groggy. I have been holding his hand. Nothing more to say right now. Don't want him to go. Am frightened for him and he is scared too. This is one of the worst days we have ever had to face.
Leanne
We have had a very harrowing discussion - Peter, the Intensivist(a good one who has been on for the last 4 days and has taken a lot of time to talk with us) and I - I can't see why they can't keep actively treating him but the doctor says that she can see he is battling but not winning.
Peter is so tired, he says he just wants to drift away as painlessly and comfortably as possible now. I have found this too difficult to bear as he has come through other fights!! I know how he has shown them before that they were wrong but he seems to have lost his strength now. He said this morning: "I feel like I have come to the end of my rope". He is also getting more anxious and distressed, and so Valium and morphine are being used in small regular doses to help as I think it is all too much for him - he is very scared. Soon they will end his intravenous feeding and revert to fluids only (glucose and water intravenously).
This weekend is our 16th anniversary of being together. Today is our 4-week anniversary of being married.
They say he may only last a few more days, maybe not through to this time next week. I have tried so hard to keep him with me over the past 5 and 1/2 years and nothing I do now seems to be able to convince the doctors, and now Peter, that there is hope still. They are telling me there is none and that Pseudonmonas pneumonia is very life threatening and with his cancer and the chemotherapy the risk factors are even higher.
It is 2.07pm Sunday 2 August and they have just switched off his food intravenously and are now putting up the glucose fluids. He is still on one antibiotic. This is the beginning of the end I think. He is awake but a little groggy. I have been holding his hand. Nothing more to say right now. Don't want him to go. Am frightened for him and he is scared too. This is one of the worst days we have ever had to face.
Leanne
Saturday, August 01, 2009
Some Positive Progress
Yesterday (Friday 31 July) Peter was able to fit in his full exercise plan by getting the nurses to start him early (6am) and then have the physio take over during the day and the last one of the day with me and 1 nurse. This involves getting the electric recliner chair to stand him up and then he walks on the spot for 25 steps and takes 3 deep breaths, with a rest in between each of these things. After each of the 6 occasions on which he did this he was totally exhausted and breathless, but did recover quite well especially earlier in the day. The last time was at 5 pm and he took longer to recover but still did well. He slept at intervals after the exercises until the next set of observations or his next exercise.
The new Intensivist he has (until Monday morning when they rotate again) is also a lung doctor and she was pleased with his progress yesterday. He moved from the "non re-breather mask" to the "Hudson mask" without much difficulty yesterday although he was reluctant to give it up the day before. He was largely able to maintain good oxygen saturation levels on the Hudson mask.
I also took in my laptop and organised a mobile broadband USB key so he was briefly able to see what I had written on the blogs and also check out a few emails, which kept him interested for a while.
If all goes well over this weekend (fingers and toes crossed) then they may see if they can change his Peg tube early next week as it is still leaking a lot of bright yellow intestinal juices which are causing pain because they excoriate the skin and make it raw.
Peter has also been moved into a room rather than being in the open ICU area, which is a bit more comfortable for me and he gets to see outside, but he is not in view of the nurses station and that has been worrying him in case he is in need but they don't respond quickly enough. He has also been sitting up and sleeping in the electric recliner chair as that is better for his lung expansion. Although, as you can imagine, only getting out of the chair 6 times a day for a few minutes, means he is having some painful pressure areas on his bottom.
He has had a few welcome visitors from work colleagues, which he has really appreciated, although the visits have to be necessarily very brief to either fit in with his regime or because he is so tired after each one. The nurses have said 5 - 10 minutes only per visit and 2 people per time. But Peter has been very interested in what everyone is doing now. His observation that not a lot seemed to have changed in the 3 years since he had left is probably true of many large organisations.
So the challenge continues over this next 2 days - more exercises with the hope that they shift the phlegm in his lungs and the doctors will continue to treat him as he wishes, which is that they don't give up on him.
Leanne
The new Intensivist he has (until Monday morning when they rotate again) is also a lung doctor and she was pleased with his progress yesterday. He moved from the "non re-breather mask" to the "Hudson mask" without much difficulty yesterday although he was reluctant to give it up the day before. He was largely able to maintain good oxygen saturation levels on the Hudson mask.
I also took in my laptop and organised a mobile broadband USB key so he was briefly able to see what I had written on the blogs and also check out a few emails, which kept him interested for a while.
If all goes well over this weekend (fingers and toes crossed) then they may see if they can change his Peg tube early next week as it is still leaking a lot of bright yellow intestinal juices which are causing pain because they excoriate the skin and make it raw.
Peter has also been moved into a room rather than being in the open ICU area, which is a bit more comfortable for me and he gets to see outside, but he is not in view of the nurses station and that has been worrying him in case he is in need but they don't respond quickly enough. He has also been sitting up and sleeping in the electric recliner chair as that is better for his lung expansion. Although, as you can imagine, only getting out of the chair 6 times a day for a few minutes, means he is having some painful pressure areas on his bottom.
He has had a few welcome visitors from work colleagues, which he has really appreciated, although the visits have to be necessarily very brief to either fit in with his regime or because he is so tired after each one. The nurses have said 5 - 10 minutes only per visit and 2 people per time. But Peter has been very interested in what everyone is doing now. His observation that not a lot seemed to have changed in the 3 years since he had left is probably true of many large organisations.
So the challenge continues over this next 2 days - more exercises with the hope that they shift the phlegm in his lungs and the doctors will continue to treat him as he wishes, which is that they don't give up on him.
Leanne
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