This week we have had further excitement. Finally the electrician arrived on Monday and now the bedroom is well wired for extra plug sockets so hopefully there will be no more tripping over the several extra powerboards and leads I needed previously.
Yesterday, Tuesday, we visited Dr Yip, oncologist for the 3 week follow-up visit after the radiation and he suggested that it might be worthwhile if Dr Thomson (gastroscopist) had a look down Peter's oesophagus to see what's happening there as Peter is unable to swallow anything at all now with all fluids and liquid food being administered by me through the peg tube. Dr Yip thinks Peter is looking much better compared to when he was in hospital earlier this month and wants to see him again in 1 month, prior to which he will have a CT scan and then decisions will be made about what might need to be done in the future on the chemotherapy front.
Peter was feeling reasonably good at the end of the appointment and agreed to go to the Woden Plaza to see about the medical bills with me. So it was his first outing in a busy shopping mall for several months and it went well apart from when he needed to go to the toilet and I, unthinkingly, wheeled him into the men's toilet (not having thought about or seen a disabled one) and caused Peter extreme embarrassment as I pushed him in and proceeded to help him up while a few startled men were at the urinal!!! I, of course, couldn't care less but I feel sure, in hindsight, that some of the men were a bit disconcerted! Anyway, Peter hurriedly told me to get him out and to go to the disabled toilet he had seen (the sign was at his eye level when he was seated in the wheelchair but not at mine so I had totally missed it). Poor Peter he was very embarrassed. but we got through that and finished the tasks I needed to do before going home without further incident.
He was exceptionally tired as a result of the activity and needed some extra pain relief and rest in the afternoon but has recovered now.
Anyway, after we got home we received a call from Dr Thomson's rooms to say that he had a spot in Dr Thomson's list for today at 12.45pm and otherwise there wasn't one for 6 weeks. So, while Peter was not keen to have to take it up today, we have done all the necessary preparations and will be heading off shortly. Unfortunately, I will miss out on a bit of time to go to the National Gallery, which we had been planning for the volunteer to come and sit with Peter for this afternoon, but we will try for that next week.
In the meantime, many thanks to all of you who keep thinking of us both locally in Australia and those overseas. Special hello to our overseas friends and relatives who have been in recent contact: Sylvia and Robbie Rex (South Carolina and Vermont); Andrew Garas and children, Kathy and Ed Brown in New York; Deb and Eugene in New Hampshire in the USA; Jan and Reggy in Holland; Kathy Wallwork in England; Imre Bokor and Bea in Europe; and many others (sorry if I haven't mentioned your name specifically this time around).
I have to go now as I need to drive Peter to the Calvary Hospital for the procedure, so will write more when I have something further to report.
Au revoir - Leanne
Peter Spiro in Canada; George Thompson in Texas;
Wednesday, July 30, 2008
Friday, July 25, 2008
Friday 28th July
As predicted we have had a busy week. The painters spent all of Monday here and got the job done with minimal disruption to Peter which was good. Naturally, the 2 days it took beforehand and the several days it is taking afterwards to get the house back into order is more exhausting for me than for Peter.
On Wednesday the GP visited and the blood results were available from the bloods taken on Tuesday. Peter's generally starting to pick up on many of the indicators now which is good. He is still low on a few things - eg. salt and his thyroid function is less than optimal so we have increased his Thyroxine to 75 micrograms and continue to pump him full of fibre, vitamins and his remianing couple of medications along with his fluids and feeds.
Yesterday we also went to see Dr Lyn Austen, radiation oncologist, for a follow-up consultation as it is 2 and 1/2 weeks since the end of the radiation. She was generally pleased with him - she stated he looks better and his strength and resistance when tested was pretty good despite Peter's concerns that he is weak and not feeling well. He has lost strength in his right arm and his motor movements are confirmed as being weak which Dr Austen confirmed could have been from the radiation as the area treated was in that range where it could affect his movement.
Peter was very concerned when she said that we need to keep an eye on how his movements are going as if the tumour moves into the spine he could become a paraplegic. Now this is Peter's 2nd most horrifying nightmare scenario, apart from choking/gasping for breath. So today he is very depressed. (This is not helped by the fact his pain has been breaking through the medication about an hour or so before the nurses arrive). It's very hard to face the thought of increasing decline in function to the point of total vulnerability and we both quake at the thought of what might lie ahead.
As he said to me this morning "I have spent my whole life trying to avoid this" (ie. cancer and physical decline). And isn't that the same for all, or at least most, of us? If we aren't having to face it within our family or friendship network, we live life with the hope that we will go in one fell swoop, without knowing a thing and it will be super quick. While in the meantime we live life as if we will always have health and independence. It's not until you go to the hospital (or work in one) that the vulnerability of the human condition faces you in every way possible. I know Peter always found hospitals hard places to be in and now that's the place or the system in which we spend a lot of time - a hard irony, that one!
Still waiting for the electrician to install the extra power points etc, but after that the house will feel more in order.
I am okay, just very tired this week. The pressure and disruption to get to a hospital appointment and manage all of the fluids and feeds is very tiring. Not helped by the fact that the car battery was flat when we went to go to the appointment and had to change to the other car to get to the appointment (but the NRMA mobile battery service did wonders when I called them later in the afternoon). However, we now have our disability pass so can park in disabled spots which is a very positive thing.
That's all for now. Salut - Leanne
On Wednesday the GP visited and the blood results were available from the bloods taken on Tuesday. Peter's generally starting to pick up on many of the indicators now which is good. He is still low on a few things - eg. salt and his thyroid function is less than optimal so we have increased his Thyroxine to 75 micrograms and continue to pump him full of fibre, vitamins and his remianing couple of medications along with his fluids and feeds.
Yesterday we also went to see Dr Lyn Austen, radiation oncologist, for a follow-up consultation as it is 2 and 1/2 weeks since the end of the radiation. She was generally pleased with him - she stated he looks better and his strength and resistance when tested was pretty good despite Peter's concerns that he is weak and not feeling well. He has lost strength in his right arm and his motor movements are confirmed as being weak which Dr Austen confirmed could have been from the radiation as the area treated was in that range where it could affect his movement.
Peter was very concerned when she said that we need to keep an eye on how his movements are going as if the tumour moves into the spine he could become a paraplegic. Now this is Peter's 2nd most horrifying nightmare scenario, apart from choking/gasping for breath. So today he is very depressed. (This is not helped by the fact his pain has been breaking through the medication about an hour or so before the nurses arrive). It's very hard to face the thought of increasing decline in function to the point of total vulnerability and we both quake at the thought of what might lie ahead.
As he said to me this morning "I have spent my whole life trying to avoid this" (ie. cancer and physical decline). And isn't that the same for all, or at least most, of us? If we aren't having to face it within our family or friendship network, we live life with the hope that we will go in one fell swoop, without knowing a thing and it will be super quick. While in the meantime we live life as if we will always have health and independence. It's not until you go to the hospital (or work in one) that the vulnerability of the human condition faces you in every way possible. I know Peter always found hospitals hard places to be in and now that's the place or the system in which we spend a lot of time - a hard irony, that one!
Still waiting for the electrician to install the extra power points etc, but after that the house will feel more in order.
I am okay, just very tired this week. The pressure and disruption to get to a hospital appointment and manage all of the fluids and feeds is very tiring. Not helped by the fact that the car battery was flat when we went to go to the appointment and had to change to the other car to get to the appointment (but the NRMA mobile battery service did wonders when I called them later in the afternoon). However, we now have our disability pass so can park in disabled spots which is a very positive thing.
That's all for now. Salut - Leanne
Sunday, July 20, 2008
Sunday 20th July 2008
While the palliative care nurse is here replacing the syringe driver, I will write a few lines.
We have had a few quiet days following last week's frenzy which is good. Peter has spent most of the time sleeping but has also watched a couple of TV programs, which is a good sign. From tomorrow we will have the painters in to patch up some of the cracks that have appeared in the house during the drought and that will be a difficult day. I have put them off coming until 8.30am so I can have a bit of time to prepare for their arrival. Hopefully it will only take a day to do but I know it will be stressful for Peter.
On Wednesday I am expecting the electrician to come to install our extra power points to assist with all the extra equipment Peter needs and sensor lights; Thursday is an appointment to see Dr Austen, the radiation oncologist. So I don't expect we will have time to recuperate until Friday.
As for Peter, he has not gained any weight (in fact seems to have lost 30o grams but that could be due to the timing of the liquid food intake or bowel movements). He is starting to feel pain again now an hour or so before the nurses come, which we think may mean he is getting a bit used to the hydromorphone and may need a slightly greater dose for the same effect and that it is wearing off earlier. He has had a few disturbed nights when breaking out in sweat and feeling cold as a result so, I have had to buy in more flannelette pyjamas to back up the supply we had as he is going through 1 or 2 pairs a day now. I think I may have cleaned Canberra out of their supply as we have 8 pairs on the go now!
Breathing easily remains a problem and some days he is on the oxygen for almost 24 hours and others it is only a couple of hours. He only had it for a few hours yesterday but had to have it for the full day, the day before that.
I had the opportunity to have our lovely volunteer, Marg, come over for a few hours on Thursday, which allowed me the time to meet a friend for a quick Malaysian Laksa lunch and then get to the bank, medicare office, chemist and hardware store for some much needed supplies. It's good to know she will be available about once a week for that. I haven't yet had the opportunity to do anything more cultural or relaxing with the time but maybe that will come in the future. I can't really leave Peter before 1pm on any day as there is so much to be done, so afternoons work best for those minor excursions.
I am fine, apart from a fall in the house on wet floors on Wednesday. Only a jarred back and and a sore knee and hands. More concerning was that Peter tottered out to see what had happened, as I must have cried out, and then we were both limping back to the bedroom together, each more concerned about the other - which was quite funny in hindsight, but very worrying at the time! We are both very aware that we can't afford for anything adverse to happen to me or we are both well and truly "stuffed".
Meanwhile, my mother has reported that her radiotherapy treatment has been fine to date and she has not stopped cooking masses of cakes and pies, spring cleaning the house and generally working full on at all times. I really hope they get the remnants of this cancer and she recovers with no recurrence.
No other news to report so I will sign off. Au revoir - Leanne
We have had a few quiet days following last week's frenzy which is good. Peter has spent most of the time sleeping but has also watched a couple of TV programs, which is a good sign. From tomorrow we will have the painters in to patch up some of the cracks that have appeared in the house during the drought and that will be a difficult day. I have put them off coming until 8.30am so I can have a bit of time to prepare for their arrival. Hopefully it will only take a day to do but I know it will be stressful for Peter.
On Wednesday I am expecting the electrician to come to install our extra power points to assist with all the extra equipment Peter needs and sensor lights; Thursday is an appointment to see Dr Austen, the radiation oncologist. So I don't expect we will have time to recuperate until Friday.
As for Peter, he has not gained any weight (in fact seems to have lost 30o grams but that could be due to the timing of the liquid food intake or bowel movements). He is starting to feel pain again now an hour or so before the nurses come, which we think may mean he is getting a bit used to the hydromorphone and may need a slightly greater dose for the same effect and that it is wearing off earlier. He has had a few disturbed nights when breaking out in sweat and feeling cold as a result so, I have had to buy in more flannelette pyjamas to back up the supply we had as he is going through 1 or 2 pairs a day now. I think I may have cleaned Canberra out of their supply as we have 8 pairs on the go now!
Breathing easily remains a problem and some days he is on the oxygen for almost 24 hours and others it is only a couple of hours. He only had it for a few hours yesterday but had to have it for the full day, the day before that.
I had the opportunity to have our lovely volunteer, Marg, come over for a few hours on Thursday, which allowed me the time to meet a friend for a quick Malaysian Laksa lunch and then get to the bank, medicare office, chemist and hardware store for some much needed supplies. It's good to know she will be available about once a week for that. I haven't yet had the opportunity to do anything more cultural or relaxing with the time but maybe that will come in the future. I can't really leave Peter before 1pm on any day as there is so much to be done, so afternoons work best for those minor excursions.
I am fine, apart from a fall in the house on wet floors on Wednesday. Only a jarred back and and a sore knee and hands. More concerning was that Peter tottered out to see what had happened, as I must have cried out, and then we were both limping back to the bedroom together, each more concerned about the other - which was quite funny in hindsight, but very worrying at the time! We are both very aware that we can't afford for anything adverse to happen to me or we are both well and truly "stuffed".
Meanwhile, my mother has reported that her radiotherapy treatment has been fine to date and she has not stopped cooking masses of cakes and pies, spring cleaning the house and generally working full on at all times. I really hope they get the remnants of this cancer and she recovers with no recurrence.
No other news to report so I will sign off. Au revoir - Leanne
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