Pleased to say that the transfusion yesterday went well. It was nearly 9 hours as expected (starting just after 9am, allowed home at nearly 6pm); and she seemed a bit brighter in the evening and this morning.
The scan today however wasn't a scan at all! In fact it was an ultrasound-guided drainpipe insertion. We were told that the procedure itself wouldn't last long, and it didn't; but in our innocence (prior to the event) we thought that "that would be it" - but it wasn't! The draining process did not start until she was back on the scanning ward; and suffice to say that six litres had been drained off in the hour or so before the nurses from the onology ward came to collect her.
The whole thing will therefore take rather longer than we thought, as she will now be staying overnight - to be allowed out at some point tomorrow, when they are satisfied that every drainable drop has come out. Not sure if they will keep a tally, or if we will be allowed to know, but it would be interesting!
As a result, the planned visit to the Sue Ryder and the planned visit from the Macmillan nurse (both scheduled for tomorrow afternoon) have been cancelled, to be rearranged at some point.
Life has its twists and turns doesn't it? It's a relief to know that nothing happens by chance though - for OUR GOD REIGNS! Everything, every event, every puzzling change, is all under His comlete and loving control. As a dear brother recently emailed me (quoting from a hymn by Ira Stanphill):-
I don't know about tomorrow,
I just live from day to day.
I don't borrow from its sunshine,
For its skies may turn to gray.
I don't worry o'er the future,
For I know what Jesus said,
And today I'll walk beside Him,
For He knows what is ahead.
Many things about tomorrow,
I don't seem to understand;
But I know Who holds tomorrow,
And I know Who holds my hand.
Wednesday, November 28, 2007
Monday, November 26, 2007
Gathering momentum
Matters are certainly developing - indeed changing from day to day at the moment!
This week was always going to be busy. Initially the plan was just the Macmillan nurse on Tuesday(tomorrow), and the rearranged scan on Wednesday. However, the Macmillan nurse had been in contact with various people following her last visit (see previous post), because the clinical psychologist came to see Sue last Friday afternoon, after the district nurses from the local doctors surgery who came Friday morning. They must have gone back and had a word with our GP, because then we had a call to say he would be coming to see Sue for himself this morning.
So he came late morning, and we had a useful chat about how Sue is and what to do about adjusting the pain-killers a bit. He also wanted to know about daily life; so we said that the pain is more or less under control, but that she has little appetite and is weak and unsteady on her feet. Bathing and dressing have needed help for a while (not that she actually gets dressed very often); but going up and down stairs needs support, and taking tablets needs help too (all too easy for unsteady hands to drop them!). He could see that she is weaker than when he last came.
Before leaving he said that he would arrange another blood transfusion, hopefully on Wednesday when she will be in hospital anyway. That however proved impossible, so she will be going in tomorrow instead for what will probably be a long day - a 3-unit transfusion could be 6-9 hours. Then back on Wednesday for the scan, drain, and recuperate; how long that will take we have no idea. I will drop her at the hospital tomorrow, but stay all day (if allowed) on Wednesday.
The other call we had last Friday afternoon was from one of the nurses at the Sue Ryder, asking if we could go up there for an hour to have a look round and meet people - nursing staff as well as the occupational therapist. So, if Sue is fit enough after two days at the hospital, we will go there for an hour on Thursday. Sue does not particularly want to ("It's where people go to die"); but hopefully it will be a useful and unpressured visit. Then the Macmillan nurse (who was going to come tomorrow) wants to come later on Thursday afternoon after we get back, with more questions and forms!
In some ways I can understand Sue's feeling of being a bit overwhelmed and losing control. However, it is a blessing that the support systems are there and accessible, so we have much to thank the Lord for.
This week was always going to be busy. Initially the plan was just the Macmillan nurse on Tuesday(tomorrow), and the rearranged scan on Wednesday. However, the Macmillan nurse had been in contact with various people following her last visit (see previous post), because the clinical psychologist came to see Sue last Friday afternoon, after the district nurses from the local doctors surgery who came Friday morning. They must have gone back and had a word with our GP, because then we had a call to say he would be coming to see Sue for himself this morning.
So he came late morning, and we had a useful chat about how Sue is and what to do about adjusting the pain-killers a bit. He also wanted to know about daily life; so we said that the pain is more or less under control, but that she has little appetite and is weak and unsteady on her feet. Bathing and dressing have needed help for a while (not that she actually gets dressed very often); but going up and down stairs needs support, and taking tablets needs help too (all too easy for unsteady hands to drop them!). He could see that she is weaker than when he last came.
Before leaving he said that he would arrange another blood transfusion, hopefully on Wednesday when she will be in hospital anyway. That however proved impossible, so she will be going in tomorrow instead for what will probably be a long day - a 3-unit transfusion could be 6-9 hours. Then back on Wednesday for the scan, drain, and recuperate; how long that will take we have no idea. I will drop her at the hospital tomorrow, but stay all day (if allowed) on Wednesday.
The other call we had last Friday afternoon was from one of the nurses at the Sue Ryder, asking if we could go up there for an hour to have a look round and meet people - nursing staff as well as the occupational therapist. So, if Sue is fit enough after two days at the hospital, we will go there for an hour on Thursday. Sue does not particularly want to ("It's where people go to die"); but hopefully it will be a useful and unpressured visit. Then the Macmillan nurse (who was going to come tomorrow) wants to come later on Thursday afternoon after we get back, with more questions and forms!
In some ways I can understand Sue's feeling of being a bit overwhelmed and losing control. However, it is a blessing that the support systems are there and accessible, so we have much to thank the Lord for.
Tuesday, November 20, 2007
More wobbles
In part Sue - in part the NHS!
I mentioned in the last post that Sue would in due course be going for a scan,to see about fluid retention. That duly took place on Friday 9th; but I won't go into the hassle of getting to the ultrasound department, other than to say "building work = 4x as far from entrance to department" - and not a porter or chair to be seen! we got there and back eventually.......
However, the NHS "wobble" we only found out about this week, when - in the absence of any progress since the day of the scan - I rang the hospital to see what should be happening. It seems there was some confusion; normally the draining is done the same day as the scan. Sadly we never got part of the message! As a result, we will need to go back next Wednesday (28th) to have another scan, followed immediately (probably still in the ultrasound department) by the draining session - and then along to the ward for a rest for a while.
We did however have a very useful meeting with the Macmillan nurse last week. This is a different one to the lady who was so helpful to us a year ago (she has left). The new lady did come and see Sue back in the summer, when of course Sue was quite well; and at that stage they agreed we would call her when required. Matters being as they are now, she agreed that she would call every two weeks or so from now on, just to see how Sue is - and she also said she would arrange for the district nurses to call every week or so as well, to keep an eye on things.
In addition, she said she would arrange for the Macmillan clinical psychologist to call (not sure about that one!); and also (probably more helpful) someone from the Occupational Health department. They should be able to assess Sue in the home environment, and provide help with supports/bars etc for getting in and out of the bath (Sue has not been able to manage that unaided for quite a long time now), hopefully a wheelchair (handy for trips to the hospital) and possibly other things too. None of that has happened yet, but when she calls again next week no doubt we will get an update. Her aim (for which we are grateful) is to put in place a bit more of a support network than we have had (or have perhaps needed) up to now.
The other thing she suggested - which was suggested a year ago, bur resisted at that stage - was a visit (or, better, a series of visits) to the local Sue Ryder home. This would enable Sue to see the place, meet the staff, and also enjoy some of the facilities offered even to day-care visitors. Last year Sue didn't like the idea; it is after all a hospice and "people go there to die"; but there is much more on offer there, so we hope that Sue will be amenable when the first contact is made.
Meanwhile Sue is still very weak and wobbly, with very little appetite; she sleeps most of the day, and seems increasingly muddled in her mind. She confuses words, she loses track of which day it is, her body clock sometimes goes wrong (so she sleeps all day, then wants to get up and go downstairs very hour or so in the night) - and she has hallucinations from time to time too. Please pray for Vera (her mother) who bears the burden all day throughout the week while I am at work.
But Sue is still here, still able to talk and smile - and next weekend we have both daughters coming home for the weekend, so they will cheer her up! And in it all, the Lord continues in His faithfulness to provide all our needs, and show us His grace and mercy. What a privilege to be at peace, knowing that He loves us and is in control. We may have our wobbles; but He remains the Rock of our salvation - "Jesus Christ, the same yesterday, today and forever" (Hebrews 13:8)
I mentioned in the last post that Sue would in due course be going for a scan,to see about fluid retention. That duly took place on Friday 9th; but I won't go into the hassle of getting to the ultrasound department, other than to say "building work = 4x as far from entrance to department" - and not a porter or chair to be seen! we got there and back eventually.......
However, the NHS "wobble" we only found out about this week, when - in the absence of any progress since the day of the scan - I rang the hospital to see what should be happening. It seems there was some confusion; normally the draining is done the same day as the scan. Sadly we never got part of the message! As a result, we will need to go back next Wednesday (28th) to have another scan, followed immediately (probably still in the ultrasound department) by the draining session - and then along to the ward for a rest for a while.
We did however have a very useful meeting with the Macmillan nurse last week. This is a different one to the lady who was so helpful to us a year ago (she has left). The new lady did come and see Sue back in the summer, when of course Sue was quite well; and at that stage they agreed we would call her when required. Matters being as they are now, she agreed that she would call every two weeks or so from now on, just to see how Sue is - and she also said she would arrange for the district nurses to call every week or so as well, to keep an eye on things.
In addition, she said she would arrange for the Macmillan clinical psychologist to call (not sure about that one!); and also (probably more helpful) someone from the Occupational Health department. They should be able to assess Sue in the home environment, and provide help with supports/bars etc for getting in and out of the bath (Sue has not been able to manage that unaided for quite a long time now), hopefully a wheelchair (handy for trips to the hospital) and possibly other things too. None of that has happened yet, but when she calls again next week no doubt we will get an update. Her aim (for which we are grateful) is to put in place a bit more of a support network than we have had (or have perhaps needed) up to now.
The other thing she suggested - which was suggested a year ago, bur resisted at that stage - was a visit (or, better, a series of visits) to the local Sue Ryder home. This would enable Sue to see the place, meet the staff, and also enjoy some of the facilities offered even to day-care visitors. Last year Sue didn't like the idea; it is after all a hospice and "people go there to die"; but there is much more on offer there, so we hope that Sue will be amenable when the first contact is made.
Meanwhile Sue is still very weak and wobbly, with very little appetite; she sleeps most of the day, and seems increasingly muddled in her mind. She confuses words, she loses track of which day it is, her body clock sometimes goes wrong (so she sleeps all day, then wants to get up and go downstairs very hour or so in the night) - and she has hallucinations from time to time too. Please pray for Vera (her mother) who bears the burden all day throughout the week while I am at work.
But Sue is still here, still able to talk and smile - and next weekend we have both daughters coming home for the weekend, so they will cheer her up! And in it all, the Lord continues in His faithfulness to provide all our needs, and show us His grace and mercy. What a privilege to be at peace, knowing that He loves us and is in control. We may have our wobbles; but He remains the Rock of our salvation - "Jesus Christ, the same yesterday, today and forever" (Hebrews 13:8)
Saturday, November 10, 2007
Stumbles and scans
Sorry for the delay since the last post, but I wanted to see what this week would bring.
First, I should explain the "stumble" part of the title……
Sue is quite weak and wobbly at the best of times at present. Last Saturday, she decided she wanted to get up, at about 6am; not a problem, as Vera and I were both up. So she started slowly down the stairs, while I collected her bits and pieces to take down – and then suddenly she is sprawled in a heap at the bottom! Looking back, we think she just came down the stairs with a bit too much momentum, and missed the last couple. However, in the mercy of God :-
• Vera wasn't waiting at the bottom of the stairs (or she would have got flattened)
• Vera's bedroom door was open, so Sue didn't crash into it
• No broken bones
• No blood
• Sue was not wearing her glasses – so there was no damage to them, and no glass fragments to worry about
• In fact she just had carpet burns to both knees, and two on her face (on the bony bits just above and below her right eye)
Of course she was in a bit of shock – as was Vera – but they calmed down after a while, and Sue was stiff for a few days. It's the facial injuries which look the worst; initially they were just pink, but then they started to scab over. They are healing nicely now though!
Then on Tuesday we had an appointment at the hospital, and saw the consultant. He thought Sue might have lost weight, which would not surprise me as she hardly eats anything (but we have not weighed her to see). However, he also thought she might have more of a fluid retention problem than before (it's something they have wondered about, but done nothing about) – and that might (apparently) have an effect on her appetite. So he said he would arrange an ultra-sound scan; and he also recommended we saw the local Macmillan Nurse again, as she might have a few ideas about various aspects of daily life.
The nurse will be coming next week; but Sue duly had her scan yesterday, and we gather (unofficially) that an outpatients appointment to drain some fluid off is quite likely next week. We'll have to see if that helps when it happens.
Meanwhile she continues to be weak, tired, and in periodic pain – not every day, but most days, and usually late afternoon/ early evening. She is often confused too, getting days and times muddled; but not quite as depressed and tearful the last few days as she was earlier in the week.
But she is still here! I say that because it was just over a year ago that she first went into hospital. She went in on November 4th; she had various tests and scans on the 5th; a liver biopsy on the 9th; and the cancer diagnosis on the 16th.
It is therefore good to look back and see how the Lord has been good to us, and made the past year a time of blessing and spiritual development. All our needs have been met; an extraordinary number of people have been led to pray for us; we have both been encouraged in our walk with the Lord; we have learned to "trust Him where we cannot trace Him"; and we have found the God of all comfort and grace to be faithful and full of love. Whatever happens in the next year is all part of His plan for us; and "He does all things well". For, as Paul wrote to the church at Rome
Who shall separate us from the love of Christ? shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? As it is written, For thy sake we are killed all the day long; we are accounted as sheep for the slaughter. Nay, in all these things we are more than conquerors through him that loved us. For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord. Rom 8:35 - 39
First, I should explain the "stumble" part of the title……
Sue is quite weak and wobbly at the best of times at present. Last Saturday, she decided she wanted to get up, at about 6am; not a problem, as Vera and I were both up. So she started slowly down the stairs, while I collected her bits and pieces to take down – and then suddenly she is sprawled in a heap at the bottom! Looking back, we think she just came down the stairs with a bit too much momentum, and missed the last couple. However, in the mercy of God :-
• Vera wasn't waiting at the bottom of the stairs (or she would have got flattened)
• Vera's bedroom door was open, so Sue didn't crash into it
• No broken bones
• No blood
• Sue was not wearing her glasses – so there was no damage to them, and no glass fragments to worry about
• In fact she just had carpet burns to both knees, and two on her face (on the bony bits just above and below her right eye)
Of course she was in a bit of shock – as was Vera – but they calmed down after a while, and Sue was stiff for a few days. It's the facial injuries which look the worst; initially they were just pink, but then they started to scab over. They are healing nicely now though!
Then on Tuesday we had an appointment at the hospital, and saw the consultant. He thought Sue might have lost weight, which would not surprise me as she hardly eats anything (but we have not weighed her to see). However, he also thought she might have more of a fluid retention problem than before (it's something they have wondered about, but done nothing about) – and that might (apparently) have an effect on her appetite. So he said he would arrange an ultra-sound scan; and he also recommended we saw the local Macmillan Nurse again, as she might have a few ideas about various aspects of daily life.
The nurse will be coming next week; but Sue duly had her scan yesterday, and we gather (unofficially) that an outpatients appointment to drain some fluid off is quite likely next week. We'll have to see if that helps when it happens.
Meanwhile she continues to be weak, tired, and in periodic pain – not every day, but most days, and usually late afternoon/ early evening. She is often confused too, getting days and times muddled; but not quite as depressed and tearful the last few days as she was earlier in the week.
But she is still here! I say that because it was just over a year ago that she first went into hospital. She went in on November 4th; she had various tests and scans on the 5th; a liver biopsy on the 9th; and the cancer diagnosis on the 16th.
It is therefore good to look back and see how the Lord has been good to us, and made the past year a time of blessing and spiritual development. All our needs have been met; an extraordinary number of people have been led to pray for us; we have both been encouraged in our walk with the Lord; we have learned to "trust Him where we cannot trace Him"; and we have found the God of all comfort and grace to be faithful and full of love. Whatever happens in the next year is all part of His plan for us; and "He does all things well". For, as Paul wrote to the church at Rome
Who shall separate us from the love of Christ? shall tribulation, or distress, or persecution, or famine, or nakedness, or peril, or sword? As it is written, For thy sake we are killed all the day long; we are accounted as sheep for the slaughter. Nay, in all these things we are more than conquerors through him that loved us. For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord. Rom 8:35 - 39
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