This week has been very hard for Peter. The chemo transfusion on Monday was fine - a 2 and 1/2 hour process in the Chemotherapy Clinic of the National Capital Private Hospital where all the staff know Peter from his past courses of treatment. They are exceptionally excellent, efficient and competent nurses who understand Peter, his history, humour and concerns and amazingly have mostly all been there for the past 5 years.
By Tuesday Peter was starting to feel a bit under the weather, but he was able to shower, dress and read in his recliner chair. It was a bit mad as I had the carpets and lounge steam cleaned so the house was in complete uproar (something I had booked before we knew Peter was starting the chemo). By Wednesday, he was very ill with unrelenting nausea and has been in bed since then. I'd say the worst days were Wednesday through to Friday and the nights were bad as well (not much rest for me there). Over the weekend he has been still nauseated but I have been trying to be rigorous in administering the Cyclizine (anti-emetic) every 4 hours to avoid him starting to get unwell and then having to spend an hour or more bringing it back under control.
He couldn't make any of his medical appointments this week as a result and I was, luckily, able to get the community nurse to come out to assess the pressure area on his paralysed right elbow. She says we are doing well with using a memory foam neck pillow to support his arm while he is in bed (courtesy of the OT at the ACT Hospice) to avoid further problems. Also our Homebased Palliative Care nurse came out on Thursday which is always reassuring.
Unfortunately, the longer Peter stays in bed the weaker he is becoming. However, he has been in such a bad state that he really needs to be in bed. He has been pretty monosyllabic for the past few days but today was able to say a few phrases so I think he is pulling out of this round now. The problem is that tomorrow the nurse from ACT Pathology will be coming to take bloods with Peter due to re-commence the 2nd week of this 1st cycle of chemotherapy on Tuesday if his blood count is able to take the next round. However, he said to me today that he feels so sick that he just can't go on. I'm not sure if that means with the treatment or generally. So I will have to wait until tomorrow to broach the subject.
With Peter being so ill, he needs more personal care than before and I am needing to do more to help him with toileting and personal care, which he can't do one-handed and when he is weaker. He is also disturbed a lot throughout the night. During the day I can get him settled and he will be generally get some peaceful rest while I do the household tasks. But at night he seems more disturbed and hence needs me more. So I am now trying to get some rest in the afternoon and we have a quiet time from about 5.30am to around 9.00 or 9.30am when I can often grab a few hours. Any routine I once might have had has now completely gone out the window.
Anyway, I have no idea what next week might bring but thanks for thinking of us with your emails and phone calls. I am not feeling very conversational at the moment, so please accept my apologies in advance if I don't phone. Best wishes to you all - Leanne
Sunday, May 31, 2009
Sunday, May 24, 2009
News as at Sunday night 24 May 2009
I am writing on behalf of Peter as he is not feeling too well. Unfortunately, the past 2 weeks have been a bit of a trial. Peter became very nauseated on Monday 11 May and for 4 days we couldn't crack it, that is, none of the usual drugs worked. At the same time he was bringing up a lot of clear, very viscous and bubbly saliva.
The palliative care service sent us out a doctor on Thursday 14 June and she was concerned that Peter was so unwell with the cyclic dry retching that she thought he should be admitted to the hospice but there were no beds. So on consulting with 2 other specialists with whom Peter has been involved, the pall care doctor organised for him to go to the National Capital Private Hospital in Woden with the gastroscopist as the admitting doctor. I took Peter in that afternoon and he stayed for a week. Luckily, his other palliative care doctor, with whom he enjoys a really wonderful and respectful relationship, was able to prescribe 2 drugs which sorted out the nausea and the saliva. One acts to dry up secretions and the other acts on the nausea.
While he was in hospital, the gastroscopy specialist took a look down Peter's oesophagus and the next evening he attempted to dilate it, which was only minimally successful. Unfortunately what he found was that Peter's oesophagus is "caked" in tumour just at the base of the neck and it had closed over so much, I think, that Peter couldn't swallow his own saliva. So the bad news was out! What this means is that no surgery is possible. Our hopes had been that the stricture causing the problem was scar tissue from radiotherapy which could be helped with the insertion of a stent to keep his osophagus open. But this is not possible with the tumour in place.
Surgery is also not possible. So tomorrow, Monday 25 May, Peter will commence another round of chemotherapy. This time he will be using a drug called Taxotere (which is not on the Pharmeceutical Benefits Scheme and so is not low cost) but it is the best hope for some shrinkage of the tumour to allow Peter some extra time with us. The benefit of tumour shrinkage is offset by the nausea, increased susceptibility to infections, body rash, pins and needles in the hands and feet and other side effects. I am hopeful that he can cope with the full 6 cycles of 3 weeks each (18 weeks altogether) as apparently some people can't and don't complete the full period. I know that neither of us is looking forward to the next few weeks but we want to stay together for as long as possible so will take any opportunity which offers some hope of further time together. We will also be trying to avoid people with any infection as we can't afford for even the slightest cold to appear. We have both had our flu shots back in March/April and Peter has also had a pneumonia vaccination which I hope will be helpful in warding off any infections.
Peter has not been using the computer or Skype now for several weeks. So I would suggest if you want to contact you do so by email (if you don't have my email address, write to Peter's and I will log on occasionally to collect them, I just don't want to put my email address into cyberspace) and I will provide his replies to you. Either that or phone calls are okay after 9.30am Australian Eastern Standard time.
I will write in the blog once per week to keep you informed, as best I can. But I know you will understand if, sometimes, it might be too hard to do so.
We send our love, best wishes and thanks to all Peter's friends and relatives. Until next time, as Peter would say "Salut". Leanne
The palliative care service sent us out a doctor on Thursday 14 June and she was concerned that Peter was so unwell with the cyclic dry retching that she thought he should be admitted to the hospice but there were no beds. So on consulting with 2 other specialists with whom Peter has been involved, the pall care doctor organised for him to go to the National Capital Private Hospital in Woden with the gastroscopist as the admitting doctor. I took Peter in that afternoon and he stayed for a week. Luckily, his other palliative care doctor, with whom he enjoys a really wonderful and respectful relationship, was able to prescribe 2 drugs which sorted out the nausea and the saliva. One acts to dry up secretions and the other acts on the nausea.
While he was in hospital, the gastroscopy specialist took a look down Peter's oesophagus and the next evening he attempted to dilate it, which was only minimally successful. Unfortunately what he found was that Peter's oesophagus is "caked" in tumour just at the base of the neck and it had closed over so much, I think, that Peter couldn't swallow his own saliva. So the bad news was out! What this means is that no surgery is possible. Our hopes had been that the stricture causing the problem was scar tissue from radiotherapy which could be helped with the insertion of a stent to keep his osophagus open. But this is not possible with the tumour in place.
Surgery is also not possible. So tomorrow, Monday 25 May, Peter will commence another round of chemotherapy. This time he will be using a drug called Taxotere (which is not on the Pharmeceutical Benefits Scheme and so is not low cost) but it is the best hope for some shrinkage of the tumour to allow Peter some extra time with us. The benefit of tumour shrinkage is offset by the nausea, increased susceptibility to infections, body rash, pins and needles in the hands and feet and other side effects. I am hopeful that he can cope with the full 6 cycles of 3 weeks each (18 weeks altogether) as apparently some people can't and don't complete the full period. I know that neither of us is looking forward to the next few weeks but we want to stay together for as long as possible so will take any opportunity which offers some hope of further time together. We will also be trying to avoid people with any infection as we can't afford for even the slightest cold to appear. We have both had our flu shots back in March/April and Peter has also had a pneumonia vaccination which I hope will be helpful in warding off any infections.
Peter has not been using the computer or Skype now for several weeks. So I would suggest if you want to contact you do so by email (if you don't have my email address, write to Peter's and I will log on occasionally to collect them, I just don't want to put my email address into cyberspace) and I will provide his replies to you. Either that or phone calls are okay after 9.30am Australian Eastern Standard time.
I will write in the blog once per week to keep you informed, as best I can. But I know you will understand if, sometimes, it might be too hard to do so.
We send our love, best wishes and thanks to all Peter's friends and relatives. Until next time, as Peter would say "Salut". Leanne
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