An update on the dressings pantomime from the other day. A different nurse turned up today to give me my daily injection and she said they were trying to move my visit into the morning. I expressed some concern about this as I am often out on a morning. She started to tell me how busy they were and I pointed out that I can't just sit around here between 9 and 5 not having a clue when they would turn up.
I explained that I was not trying to be awkward but there was no point n their turning up here and finding me out as that just wasted their time. I don't think they are used to having to enter into a dialogue with patients and consider their convenience as well as their own. I suppose I shouldn't be surprised as this is the NHS we are talking about.
Anyway the business of the dressings came up and she said it was her that had actually written the script for the "missing items" and it wasn't her fault that they hadn't arrived. I said I wasn't looking to blame anybody but that what had happened on Monday with me getting all the discomfort of having my leg dressed, getting the flack because the stuff wasn't there and then having the inadequate half-compression applied.
She looked behind the door where the nurses keep all their stuff and announced straight away that the "missing" stuff, bandages and creams were all there. As the chemist hasn't delivered anything this week they must also have been there on Monday.
What a farce.
In the meantime I went to the haematology clinic yesterday, Tuesday, as usual and my HG count was back up to 10.5. It really does seem to be stuck there.
He has changed me fromCyclosporin to Cellcept, a different immune suppressant. He says he had good results with it.
Tomorrow it's the leg ulcer clinic. Oh joy!
Wednesday, 16 November 2011
Tuesday, 15 November 2011
A Bit Of A Pantomime
I think I explained the other day that my right leg is now under full compression as they are happy that the DVT won't cause problems and, yes, I know I still have to write about the mysterious DVT.
Anyway, last Monday the leg ulcer clinic put full compression dressings on for the first time and wrote up the new revised care regime and booked an appointment for some ten days ahead. As pressure dressings are not to be left on for more than a week without being changed yesterday, Monday, was the day when the visiting district nurse was to do just that.
She arrived with plenty of time to do it but seemed reluctant for some reason. I suspect they are just so rushed they would rather not do a lengthy job like that if they can argue their way out of it. However the dressing was beginning to "tug" a bit at the sores and I was getting a bit of discomfort as a result so I sort of insisted. They took off the old dressing and then found that the magic book of notes kept here was out of date and that I didn't have either the cream or all the dressings that were needed
Why? They and the ulcer clinic are based in the same building some 20 yards apart yet they don't communicate. The nurse was trying to give me a verbal list of what she needed so I could pass it on to the ulcer clinic staff when I go on Thursday. I refused.
The idea that the patient should be passing on such messages between clinical professionals full of abreviations and medical terms sound damned dangerous to me.
In the end I had to settle for half-compression because that was all they could do and I had a damned sore leg without getting the proper treatment.
I was not a happy bunny as you can imagine and now the dressing seems to be slipping or, at least, isn't gripping as well as it should because it hurts as I walk about.
What a farce!
Anyway, last Monday the leg ulcer clinic put full compression dressings on for the first time and wrote up the new revised care regime and booked an appointment for some ten days ahead. As pressure dressings are not to be left on for more than a week without being changed yesterday, Monday, was the day when the visiting district nurse was to do just that.
She arrived with plenty of time to do it but seemed reluctant for some reason. I suspect they are just so rushed they would rather not do a lengthy job like that if they can argue their way out of it. However the dressing was beginning to "tug" a bit at the sores and I was getting a bit of discomfort as a result so I sort of insisted. They took off the old dressing and then found that the magic book of notes kept here was out of date and that I didn't have either the cream or all the dressings that were needed
Why? They and the ulcer clinic are based in the same building some 20 yards apart yet they don't communicate. The nurse was trying to give me a verbal list of what she needed so I could pass it on to the ulcer clinic staff when I go on Thursday. I refused.
The idea that the patient should be passing on such messages between clinical professionals full of abreviations and medical terms sound damned dangerous to me.
In the end I had to settle for half-compression because that was all they could do and I had a damned sore leg without getting the proper treatment.
I was not a happy bunny as you can imagine and now the dressing seems to be slipping or, at least, isn't gripping as well as it should because it hurts as I walk about.
What a farce!
Sunday, 13 November 2011
Birthday Girl
A short respite from my recital of symptoms and medical facts in this post. Today is Ann's birthday and I have really struggled emotionally to cope with the fact that this may be the last of her birthdays I will share with her.
Oh, I've bought her a present, a puppy which she actually got a few months ago and I managed to get her a card too though not combined with her favourite peppermint creams from Thornton's as that particular shop is no longer accessible to me with my leg in this state but it was a traditional sloppy card.
She's the best thing that ever happened to me but too much emotion between us isn't going to help either of us and I'll have to let the card, inadequate as it is, do the talking for me.
Oh, I've bought her a present, a puppy which she actually got a few months ago and I managed to get her a card too though not combined with her favourite peppermint creams from Thornton's as that particular shop is no longer accessible to me with my leg in this state but it was a traditional sloppy card.
She's the best thing that ever happened to me but too much emotion between us isn't going to help either of us and I'll have to let the card, inadequate as it is, do the talking for me.
Thursday, 10 November 2011
The Leg
The other problem that's limiting my quality of life is my darned leg.
As I said, it started giving me a little trouble early this year but it was mainly a matter of getting cramp in my right foot during the night but then I noticed the leg was a bit swollen and early in August my son said it was very red. In the meantime at one of my cancer checking sessions I had mentioned the cramps to a nurse who advised me to see my GP. The GP had thought it was probably poor drainage because most of my lymph nodes were removed last year along with my bladder and prostate. She was however concerned that I might have DVT so she had me checked for that but the test came up negative.
I was prescribed antibiotics, however, and the colour did return to normal and I completed the antibiotics about a week before that dreadful Friday.
In the meantime there seemed little chance of getting any treatment in a reasonable timescale from the NHS so I found a physio who practised manual lymphatic drainage and booked treatment.
I managed only 3 sessions before "black Friday" but they were working. It was getting easier to get my shoe on and off over that foot which must mean the MLD was having some affect.
However on that Friday morning the leg was up like a balloon and I could barely stand on it. I had to "bottom bounce" downstairs like a toddler still unsure of its feet.
I had been keeping my skin on the swollen leg in decent nick with loads of moisturiser so although the skin had dry patches on it it was still intact. Sadly when I was lying in hospital that regular moisturising ceased and I noticed open sores on the shin.
The nurses did dress the sores, of course, but mainly as a way of preventing a HAI rather than to heal them.
It was only after it was made clear that any chemotherapy was impossible with open sores on my leg that anybody gave dealing with them any priority. Even then it took several weeks to get to a leg ulcer clinic.
I have now had pressure dressings on the leg for about 3 weeks and the sores are healing slowly and I am told that the swelling is going down a bit though I have to say I don't know how anybody can tell with all the layers of dressing on it.
I still can't walk very far though much of that is because of my blood problem but having an elephant's leg does not help one little bit.
My two feet are now different sizes. I have had to buy a size ten for my right foot but, of course, an eight still does for my left. So I ended up having to buy two pairs of the same shoe. My vanity would not let me wander around in odd shoes.
The leg is damned sore at times as one would expect with open sores on the shins especially if the dressings are stuck or moving around. Now that I have the compression dressings, though, the set up seems to be more stable and I am getting less soreness there.
The only downside is that as the dressings try to force the surplus water up out of my leg I do have an ache in my groin as the fluid pushes through the restricted drainage channels.
Thank heavens for pain-killers!
As I said, it started giving me a little trouble early this year but it was mainly a matter of getting cramp in my right foot during the night but then I noticed the leg was a bit swollen and early in August my son said it was very red. In the meantime at one of my cancer checking sessions I had mentioned the cramps to a nurse who advised me to see my GP. The GP had thought it was probably poor drainage because most of my lymph nodes were removed last year along with my bladder and prostate. She was however concerned that I might have DVT so she had me checked for that but the test came up negative.
I was prescribed antibiotics, however, and the colour did return to normal and I completed the antibiotics about a week before that dreadful Friday.
In the meantime there seemed little chance of getting any treatment in a reasonable timescale from the NHS so I found a physio who practised manual lymphatic drainage and booked treatment.
I managed only 3 sessions before "black Friday" but they were working. It was getting easier to get my shoe on and off over that foot which must mean the MLD was having some affect.
However on that Friday morning the leg was up like a balloon and I could barely stand on it. I had to "bottom bounce" downstairs like a toddler still unsure of its feet.
I had been keeping my skin on the swollen leg in decent nick with loads of moisturiser so although the skin had dry patches on it it was still intact. Sadly when I was lying in hospital that regular moisturising ceased and I noticed open sores on the shin.
The nurses did dress the sores, of course, but mainly as a way of preventing a HAI rather than to heal them.
It was only after it was made clear that any chemotherapy was impossible with open sores on my leg that anybody gave dealing with them any priority. Even then it took several weeks to get to a leg ulcer clinic.
I have now had pressure dressings on the leg for about 3 weeks and the sores are healing slowly and I am told that the swelling is going down a bit though I have to say I don't know how anybody can tell with all the layers of dressing on it.
I still can't walk very far though much of that is because of my blood problem but having an elephant's leg does not help one little bit.
My two feet are now different sizes. I have had to buy a size ten for my right foot but, of course, an eight still does for my left. So I ended up having to buy two pairs of the same shoe. My vanity would not let me wander around in odd shoes.
The leg is damned sore at times as one would expect with open sores on the shins especially if the dressings are stuck or moving around. Now that I have the compression dressings, though, the set up seems to be more stable and I am getting less soreness there.
The only downside is that as the dressings try to force the surplus water up out of my leg I do have an ache in my groin as the fluid pushes through the restricted drainage channels.
Thank heavens for pain-killers!
Wednesday, 9 November 2011
My Blood
Let's deal with one set of symptoms at a time. Today it can be my blood.
As I said, when I went into hospital my HG count was 5.9 as against the normal count of 13. No wonder I could hardly walk and had little feeling in my fingers!
They thought that I was experiencing an auto-imune reaction to my own red blood cells and that I was destroying them faster than my bone marrow could make new ones. I hadn't been particularly aware of shortness of breath until a few days before my frightened 999 call so whatever happened must have happened suddenly.
An early theory was that it had been triggered by an antibiotic I had taken a little earlier for a suspected infection in my swollen leg and that may still be the best theory there is though I don't think they are really convinced.
So they got a couple of units of my blood and sent them off to be processed to remove any antibodies that might cause them to be killed off and gave them to me. After that I had 3 or 4 days on intravenous steroids which, it appears, are the standard treatment for this condition. After that 60MG of aural steroids plus some follic acid and the imune-supressants were the order of the day until I had been home a couple of weeks when the HG count was looking better.
Gradually the count has risen to a maximum of 10.6 but seems to have got stuck at that sort of level. This Tuesday it was actually back down to 10.3.
I am on only 20MG of steroids now & although I am pleased not to be hungry all the time and pleased to be able to sleep better I do wonder whether I should have a higher dose until the blood is much better. After all, the low HG is one of the two things that is really hitting my quality of life with my concentration and attention span being poor and my energy levels being very low.
I had a bit of a wrestling match with our puppy the other evening and I finished up absolutely shattered and could hardly get my breath back. Ann thought she was going to have to ring 999 again but after about an hour I did recover.
No more fighting with the pup!
Anyway Dr. Watts said it's not uncommon for the count to plateau at about this number but he's going to send the blood off for further tests to see if and why I am still killing off my red cells so quickly. He may try a different immune suppressant, he says.
In the meantime I struggle on.
As I said, when I went into hospital my HG count was 5.9 as against the normal count of 13. No wonder I could hardly walk and had little feeling in my fingers!
They thought that I was experiencing an auto-imune reaction to my own red blood cells and that I was destroying them faster than my bone marrow could make new ones. I hadn't been particularly aware of shortness of breath until a few days before my frightened 999 call so whatever happened must have happened suddenly.
An early theory was that it had been triggered by an antibiotic I had taken a little earlier for a suspected infection in my swollen leg and that may still be the best theory there is though I don't think they are really convinced.
So they got a couple of units of my blood and sent them off to be processed to remove any antibodies that might cause them to be killed off and gave them to me. After that I had 3 or 4 days on intravenous steroids which, it appears, are the standard treatment for this condition. After that 60MG of aural steroids plus some follic acid and the imune-supressants were the order of the day until I had been home a couple of weeks when the HG count was looking better.
Gradually the count has risen to a maximum of 10.6 but seems to have got stuck at that sort of level. This Tuesday it was actually back down to 10.3.
I am on only 20MG of steroids now & although I am pleased not to be hungry all the time and pleased to be able to sleep better I do wonder whether I should have a higher dose until the blood is much better. After all, the low HG is one of the two things that is really hitting my quality of life with my concentration and attention span being poor and my energy levels being very low.
I had a bit of a wrestling match with our puppy the other evening and I finished up absolutely shattered and could hardly get my breath back. Ann thought she was going to have to ring 999 again but after about an hour I did recover.
No more fighting with the pup!
Anyway Dr. Watts said it's not uncommon for the count to plateau at about this number but he's going to send the blood off for further tests to see if and why I am still killing off my red cells so quickly. He may try a different immune suppressant, he says.
In the meantime I struggle on.
Monday, 7 November 2011
That Damned Friday
So on Friday August the 26th my world fell apart.
I woke up and felt exhausted. I just managed to go to the bathroom and disconnect my overnight bag but that was a real effort. My leg was up like a balloon and hurt like hell and I was struggling to breath.
I "bottom bounced" down the stairs and tried making some breakfast but I had no chance. I couldn't work the radio in the kitchen properly as I had little sense of touch in my fingers and in the end I just sat and waited until Ann came down. I was terrified.
I knew I needed help and after a call to my GP surgery calling an ambulance appeared to be the quickest way to get some. They arrived within ten minutes of the 999 call and I was whisked off to the local Casualty department where I was given a thorough going over including various blood tests, X-ray, CT scan, Doppler test and I forget what else.
The conclusions reached at the end of this were that I did have DVT in my groin which, a lump in one of the remaining lymph nodes which was probably cancer and these two together were causing the problem with my leg as both drainage mechanisms were now compromised. My blood was also in a mess because my body was destroying red blood cells faster than my bone marrow could replace them. this shortage of red blood cells was what was causing the shortage of breath and was pretty bad. The normal HG count is 13.0 but mine was 5.9.
Needless to say I was admitted for treatment and I have to say I was damned relieved despite the news that my cancer was probably back.
As regards the blood, I had two units of bblood treated to remove any antibodies that might be contributing to the problem of the destruction of red blood cells followed by a few days of intraveinous steroids and then massive doses of oral steroids until the HG count got up into the 8 - 9 range.
Since I left hospital a couple of weeks later the dosage has dropped from 60MG each day to 20MG but the count is going up very slowly now and seems to have plateaued around 10.5 which isn't bad but does mean my concentration is poor and I get tired very easily so my life is pretty limited especially when it's combined with the leg problem.
Not much was done to treat the leg while I was in hospital and a new problem arose. I had been keeping the skin intact despite the swelling using large amounts of moisturiser but lying there dozing off most of the time that got neglected and suddenly I had open sores on my swollen leg.
The cancer was confirmed in late September and, of course, it is incurable. If conditions are right then they will give me chemo but that is simply to slow it down a bit not to finish it off.
Without chemo I was given six months and with it twelve months though to be fair they did say those numbers were very variable.
The trouble is that I can't have chemo just now. The open sores on my leg are an obvious vector for an infection and, of course, chemo would kill off my immune system allowing the infection to kill me. Also chemo depresses the body's ability to produce red blood cells and I am struggling with my HG count. Not only that but as it's thought that the HG problem was an auto-immune response I am taking Cyclosporin, an immune suppressant. that, of course, can't go on if I'm on chemo.
So until my blood is right and my leg heals there is no chance of chemo.
That's enough for now.
I woke up and felt exhausted. I just managed to go to the bathroom and disconnect my overnight bag but that was a real effort. My leg was up like a balloon and hurt like hell and I was struggling to breath.
I "bottom bounced" down the stairs and tried making some breakfast but I had no chance. I couldn't work the radio in the kitchen properly as I had little sense of touch in my fingers and in the end I just sat and waited until Ann came down. I was terrified.
I knew I needed help and after a call to my GP surgery calling an ambulance appeared to be the quickest way to get some. They arrived within ten minutes of the 999 call and I was whisked off to the local Casualty department where I was given a thorough going over including various blood tests, X-ray, CT scan, Doppler test and I forget what else.
The conclusions reached at the end of this were that I did have DVT in my groin which, a lump in one of the remaining lymph nodes which was probably cancer and these two together were causing the problem with my leg as both drainage mechanisms were now compromised. My blood was also in a mess because my body was destroying red blood cells faster than my bone marrow could replace them. this shortage of red blood cells was what was causing the shortage of breath and was pretty bad. The normal HG count is 13.0 but mine was 5.9.
Needless to say I was admitted for treatment and I have to say I was damned relieved despite the news that my cancer was probably back.
As regards the blood, I had two units of bblood treated to remove any antibodies that might be contributing to the problem of the destruction of red blood cells followed by a few days of intraveinous steroids and then massive doses of oral steroids until the HG count got up into the 8 - 9 range.
Since I left hospital a couple of weeks later the dosage has dropped from 60MG each day to 20MG but the count is going up very slowly now and seems to have plateaued around 10.5 which isn't bad but does mean my concentration is poor and I get tired very easily so my life is pretty limited especially when it's combined with the leg problem.
Not much was done to treat the leg while I was in hospital and a new problem arose. I had been keeping the skin intact despite the swelling using large amounts of moisturiser but lying there dozing off most of the time that got neglected and suddenly I had open sores on my swollen leg.
The cancer was confirmed in late September and, of course, it is incurable. If conditions are right then they will give me chemo but that is simply to slow it down a bit not to finish it off.
Without chemo I was given six months and with it twelve months though to be fair they did say those numbers were very variable.
The trouble is that I can't have chemo just now. The open sores on my leg are an obvious vector for an infection and, of course, chemo would kill off my immune system allowing the infection to kill me. Also chemo depresses the body's ability to produce red blood cells and I am struggling with my HG count. Not only that but as it's thought that the HG problem was an auto-immune response I am taking Cyclosporin, an immune suppressant. that, of course, can't go on if I'm on chemo.
So until my blood is right and my leg heals there is no chance of chemo.
That's enough for now.
Sunday, 6 November 2011
I'm Back
I thought I had finished with this blog and had even been too lazy to close it properly. I had passed all my six-month tests and I thought I was on pretty safe ground for a year or two anyway but sadly I was wrong and now I have to reopen my story.
There's a lot of catching up to do simply because I just haven't had the energy to get things moving before now.
As I said I had got through all the tests in early summer without a hitch though I had noticed that my right leg was a bit swolen a fact that I mentioned to one of the nurses during the checks. She advised me to see my GP about it which I did.
She thought it was probably lymphadema caused by the fact that most of the lymph nodes in my right groin had been removed with my bladder and that the drainage in that leg was compromised. She was concerned that I might have DVT but the tests for that came back negative.
The leg was a bit red so I was prescribed antibiotics in case there was an infection.
Discussing treatment there seemed to be very little the NHS could offer except support stockings & I didn't fancy that for the rest of my life and anyway it could take ages to get them sorted out so I decided to go privately for manual lymphatic drainage which I had heard could be pretty effective.
I attended a couple of sessions and they certainly did appear to help as I found getting my shoe on and off much easier after them but I never had a chance to finish the course of treatment.
During the week before the August bank holiday Ann & I both seemed to have the same Summer bug as we were both a bit "one degree under". Ann's symptoms subsided slowly but mine actually got a bit worse. On the Tuesday I had really struggled for energy just walking to and from the village shops about a mile away and then came Friday.
I'll break off here and do another post later.
There's a lot of catching up to do simply because I just haven't had the energy to get things moving before now.
As I said I had got through all the tests in early summer without a hitch though I had noticed that my right leg was a bit swolen a fact that I mentioned to one of the nurses during the checks. She advised me to see my GP about it which I did.
She thought it was probably lymphadema caused by the fact that most of the lymph nodes in my right groin had been removed with my bladder and that the drainage in that leg was compromised. She was concerned that I might have DVT but the tests for that came back negative.
The leg was a bit red so I was prescribed antibiotics in case there was an infection.
Discussing treatment there seemed to be very little the NHS could offer except support stockings & I didn't fancy that for the rest of my life and anyway it could take ages to get them sorted out so I decided to go privately for manual lymphatic drainage which I had heard could be pretty effective.
I attended a couple of sessions and they certainly did appear to help as I found getting my shoe on and off much easier after them but I never had a chance to finish the course of treatment.
During the week before the August bank holiday Ann & I both seemed to have the same Summer bug as we were both a bit "one degree under". Ann's symptoms subsided slowly but mine actually got a bit worse. On the Tuesday I had really struggled for energy just walking to and from the village shops about a mile away and then came Friday.
I'll break off here and do another post later.
Friday, 24 June 2011
The Piddle Pump
This morning I had a repeat of the nuclear kidney function test that took place in January. I got the letter about this test just two working days after my recent check up but they didn't even bother mentioning it which meant it came as a bit of a shock and upset me quite a bit. At first I didn't recognise that it was a repeat test so unexpected was it.
Anyway I attended this morning and the staff were fine and the scan took place on time. As before, a mildly radioactive tracer is injected and its progress is tracked as your kidneys work. Then, just to speed things a bit and make them more interesting they inject you with the same stuff that's in a water pill so your kidneys start to work in overdrive.
The last time they did this I suffered a bit of discomfort as the urine pumped from my kidneys along the ureters and out of the stoma but not this time as, I suppose, things were healed up more solidly.
The main problem is that for the rest of the day I shall be rushing to the toilet regularly, very regularly indeed, to empty my bag.
When I got back from the hospital in my cab the leg bag was just about ready to burst and I had already emptied it twice since the end of the scan. Luckily I'm not planning to go anywhere this afternoon.
Anyway I attended this morning and the staff were fine and the scan took place on time. As before, a mildly radioactive tracer is injected and its progress is tracked as your kidneys work. Then, just to speed things a bit and make them more interesting they inject you with the same stuff that's in a water pill so your kidneys start to work in overdrive.
The last time they did this I suffered a bit of discomfort as the urine pumped from my kidneys along the ureters and out of the stoma but not this time as, I suppose, things were healed up more solidly.
The main problem is that for the rest of the day I shall be rushing to the toilet regularly, very regularly indeed, to empty my bag.
When I got back from the hospital in my cab the leg bag was just about ready to burst and I had already emptied it twice since the end of the scan. Luckily I'm not planning to go anywhere this afternoon.
Monday, 13 June 2011
Another check
Last Friday I had an appointment at Withington for a six month check. My appointment was for 9:15 and I was seen at 10:45. How on earth can you be running an hour and a half behind for such early appointments?
Anyway, the CT scan looked clear and the doctor, one who I hadn't met previously, seemed pretty happy with the physical examination he carried out. One further test is to come, however, and it will be repeated every year.
They will pump some water up my penis into my urethra, collect it as it comes back out and examine it for traces of cancer cells from the lining of the urethra. Presumably they will let me know when and where they intend to do this test.
One thing that really annoyed me after my long wait was that, at the end of my consultation, he said he wanted me to go for a blood test. I was fuming!
Why could that not have been done when I was sitting around waiting to see him. Last time that happened I then had to wait for yet another half hour for my turn to have blood taken.
This time I was lucky and there was no queue so it delayed me only about ten minutes.
As to my overall health, I feel pretty good but I do still get tired. I suspect that the chemo and radiation treatments have left me with some long-term consequences, however, as I seem to get a lot of overnight cramp in my right leg and I have a usually slight pain in my right hip, too. This whole experience has definitely aged me but I am alive and leading a pretty normal life and that's the most important thing.
As to the practical side of things, I am managing my strange plumbing pretty well although I make the occasional mistake and there is the occasional equipment failure but I have learnt how to cope with tboth so the potentially very embarrassing consequences of them have been strictly limited.
Anyway, the CT scan looked clear and the doctor, one who I hadn't met previously, seemed pretty happy with the physical examination he carried out. One further test is to come, however, and it will be repeated every year.
They will pump some water up my penis into my urethra, collect it as it comes back out and examine it for traces of cancer cells from the lining of the urethra. Presumably they will let me know when and where they intend to do this test.
One thing that really annoyed me after my long wait was that, at the end of my consultation, he said he wanted me to go for a blood test. I was fuming!
Why could that not have been done when I was sitting around waiting to see him. Last time that happened I then had to wait for yet another half hour for my turn to have blood taken.
This time I was lucky and there was no queue so it delayed me only about ten minutes.
As to my overall health, I feel pretty good but I do still get tired. I suspect that the chemo and radiation treatments have left me with some long-term consequences, however, as I seem to get a lot of overnight cramp in my right leg and I have a usually slight pain in my right hip, too. This whole experience has definitely aged me but I am alive and leading a pretty normal life and that's the most important thing.
As to the practical side of things, I am managing my strange plumbing pretty well although I make the occasional mistake and there is the occasional equipment failure but I have learnt how to cope with tboth so the potentially very embarrassing consequences of them have been strictly limited.
Wednesday, 23 March 2011
Really Good News
After sitting and waiting to see Dr. B. for over an hour and having prepared myself to deal with the news that the nodule in my lung had grown again or his advice that, even if it hadn't, he thought it would be a good idea to deal with it sooner than later, I was so relieved when he told me that, although he had not received the report on last week's CT scan, he could see from the pictures that the nodule was now a linear feature rather than its previous round shape and that in his opinion it was healing up and was definitely not a cancer.
I thought there was going to be a "but" but, no, there was no bad news to go along with the good.
I will see him after another scan in six months but it's almost certainly just a formality.
So now all I have to hope is that the lower half of the scan looking at my pelvic area doesn't show Mr. R. any bad news. I haven't heard from the Urology department yet but no doubt they will book an appointment for my check up eventually. I don't have the same concerns about that as I did about potential lung cancer.
I thought there was going to be a "but" but, no, there was no bad news to go along with the good.
I will see him after another scan in six months but it's almost certainly just a formality.
So now all I have to hope is that the lower half of the scan looking at my pelvic area doesn't show Mr. R. any bad news. I haven't heard from the Urology department yet but no doubt they will book an appointment for my check up eventually. I don't have the same concerns about that as I did about potential lung cancer.
Thursday, 17 March 2011
Another Damned Scan
Today I was scheduled to have a "full body" CT scan. My appointment to see Dr. B about the nodule in my lung is next Tuesday and he needs the results by then which is, I reckon, pushing it.
I think I should have had this scan a week earlier to make sure that the results were with him on the 22nd and I usually get a week or ten days notice of the date for the scan so when I had heard nothing by the beginning of March I was worried. The lung cancer department and the urology department both have sessions with me about now for checks and as each would need a CT scan they agreed on one combined "full body" scan to save me going for two separate ones. I was worried that each department thought the other one was booking the scan.
The only contact I had with any of them was Dr. B's secretary so I rang her and expressed my concerns. She was very pleasant and helpful and said she would check and ring me back which she did some 10minutes later.
Judging from her scarcely concealed fury I had been right and it was her lot who had forgotten to book the scan.
Anyway I turned up at 12:30 this afternoon as requested and sat around for an hour. It appears that just before my appointment time victims of a road crash needed urgent scans and, quite rightly, they took priority so everybody in the queue had to wait well beyond their appointments. Instead of getting home by about 1:30 as I had expected it was just after 3pm when I got home.
Let's just hope they can get a wiggle on so that the results are with Dr. B. by next Tuesday.
I think I should have had this scan a week earlier to make sure that the results were with him on the 22nd and I usually get a week or ten days notice of the date for the scan so when I had heard nothing by the beginning of March I was worried. The lung cancer department and the urology department both have sessions with me about now for checks and as each would need a CT scan they agreed on one combined "full body" scan to save me going for two separate ones. I was worried that each department thought the other one was booking the scan.
The only contact I had with any of them was Dr. B's secretary so I rang her and expressed my concerns. She was very pleasant and helpful and said she would check and ring me back which she did some 10minutes later.
Judging from her scarcely concealed fury I had been right and it was her lot who had forgotten to book the scan.
Anyway I turned up at 12:30 this afternoon as requested and sat around for an hour. It appears that just before my appointment time victims of a road crash needed urgent scans and, quite rightly, they took priority so everybody in the queue had to wait well beyond their appointments. Instead of getting home by about 1:30 as I had expected it was just after 3pm when I got home.
Let's just hope they can get a wiggle on so that the results are with Dr. B. by next Tuesday.
Tuesday, 25 January 2011
Panic!
I knew I was getting low on overnight bags and would need to order more so yesterday morning I decided on a stock take of all my kit. I found I had one new overnight bag left so it was definitely time to order more just in case that one was faulty and I had only two or three leg bags left so I might as well order more of those too.
The big shock came when I checked my stoma bags. I thought I had a couple left in the small case where I keep the stuff I need each time, bags, wipes, disposal bags and so on and to my surprise there were no stoma bags in it. I didn't worry too much as I had another box of them somewhere ... except I couldn't find that spare box. Somehow I have miscalculated as I can't see how I've mislaid a whole box of the darned things. I must have used both boxes I remember having delivered.
So it appears that on Saturday night I used my last bag and I was going to have to make that one last until I could get some more delivered which would be Tuesday at the earlieest. I normally wear a bag for two days and I've currently got into the havit of taking a shower only when I'm about to change bags as the shower loosens the adhesive on the bags. Clearly in hot sweaty weather that will have to change but for now it works out OK.
However there I was on Monday morning with no spare bag if the one I was wearing started to leak. I broke out in a cold sweat & rang my supplier immediately and orderd what I needed.
I was worrying all Monday and especially over Monday night and, of course, I didn't dare have a shower.
There was huge relief on Tuesday morning when my new supplies turned up so tonight I can have a long, luxurious shower before fitting my new bag.
The big shock came when I checked my stoma bags. I thought I had a couple left in the small case where I keep the stuff I need each time, bags, wipes, disposal bags and so on and to my surprise there were no stoma bags in it. I didn't worry too much as I had another box of them somewhere ... except I couldn't find that spare box. Somehow I have miscalculated as I can't see how I've mislaid a whole box of the darned things. I must have used both boxes I remember having delivered.
So it appears that on Saturday night I used my last bag and I was going to have to make that one last until I could get some more delivered which would be Tuesday at the earlieest. I normally wear a bag for two days and I've currently got into the havit of taking a shower only when I'm about to change bags as the shower loosens the adhesive on the bags. Clearly in hot sweaty weather that will have to change but for now it works out OK.
However there I was on Monday morning with no spare bag if the one I was wearing started to leak. I broke out in a cold sweat & rang my supplier immediately and orderd what I needed.
I was worrying all Monday and especially over Monday night and, of course, I didn't dare have a shower.
There was huge relief on Tuesday morning when my new supplies turned up so tonight I can have a long, luxurious shower before fitting my new bag.
Normality Returns
I didn't go out today partly because of the miserable weather but more importantly because I had to wait in until my delivery of equipment arrived. More on this in my next post.
However I have been out and about a lot in this last week and finally it is becoming a pleasure rather than an endurance exercise. I am back to walking at my full speed for the first time for nearly three years rather than shuffling along like an old man and it feels absolutely great.
Last Friday I even considered seriously walking back from the centre of Sale but it was pretty cold and the bus was due any minute so I did chicken out in the end.
There is, I think, no doubt that life is rapidly returning to normal.
Mind you, I did duck out of helping to carry a half hundredweight of bird sand upstairs the other day. I think that might have been pushing my luck a bit too far.
However I have been out and about a lot in this last week and finally it is becoming a pleasure rather than an endurance exercise. I am back to walking at my full speed for the first time for nearly three years rather than shuffling along like an old man and it feels absolutely great.
Last Friday I even considered seriously walking back from the centre of Sale but it was pretty cold and the bus was due any minute so I did chicken out in the end.
There is, I think, no doubt that life is rapidly returning to normal.
Mind you, I did duck out of helping to carry a half hundredweight of bird sand upstairs the other day. I think that might have been pushing my luck a bit too far.
Friday, 14 January 2011
A Bursting Bag
Well, that's a bit of an exageration but it was a close run thing.
Today I headed back to hospital for a renal scan. This is to establish a base level reading of my kidney function and consists of pictures being taken as my kidneys work. A mildly radioactive substance is injected into a vein and a camera tracks it through my system as the kidneys try to get it out of my system. After about 15 minutes another injection is given which is the same stuff as in a water pill. Now such pills make you run to the bathroom pretty often and you can probably imagine how quickly they work when taken intraveinously like this.
I could feel fluids pumping through my still healing plumbing. My back ached and my stoma was throbbing as my kidneys worked at full capacity.
It was soon over, thank goodness, & I was told that I would keep on passing water pretty rapidly for a couple more hours.
Before leaving the hospital I enptied my leg bag but by the time my cab dropped me at home some 20 minutes later my bag was blown up like a balloon & I really was worried that it might burst.
Luckily I made it up the stairs to the bathroom and emptied for the first of many times well into the afternoon.
The aftereffects of all this are that I have a few more aches and pains and will probably take a pain killer before I go to bed tonight. Clearly I am not completely healed
Today I headed back to hospital for a renal scan. This is to establish a base level reading of my kidney function and consists of pictures being taken as my kidneys work. A mildly radioactive substance is injected into a vein and a camera tracks it through my system as the kidneys try to get it out of my system. After about 15 minutes another injection is given which is the same stuff as in a water pill. Now such pills make you run to the bathroom pretty often and you can probably imagine how quickly they work when taken intraveinously like this.
I could feel fluids pumping through my still healing plumbing. My back ached and my stoma was throbbing as my kidneys worked at full capacity.
It was soon over, thank goodness, & I was told that I would keep on passing water pretty rapidly for a couple more hours.
Before leaving the hospital I enptied my leg bag but by the time my cab dropped me at home some 20 minutes later my bag was blown up like a balloon & I really was worried that it might burst.
Luckily I made it up the stairs to the bathroom and emptied for the first of many times well into the afternoon.
The aftereffects of all this are that I have a few more aches and pains and will probably take a pain killer before I go to bed tonight. Clearly I am not completely healed
Back To Court
My sitting as a magistrate is an important part of my life and I have missed it but, of course, it would be unfair to my fellow magistrates and also to those appearing befor us if I returned before I was fit enough to give cases the attention and concentration they deserve. Yesterday was therefore my first sitting since my surgery.
Ann thinks it was too soon and that I would be exhausted but I promised her I would get cabs both there and back home and that I would try to avoid a late sitting. Also I took a sandwich with me rather than going out at lunch time.
It was a slow start to the day but once we got started it was an interesting day. We finished at about 3:15 and I was offered a lift home which I gratefully accepted.
I was tired but not excessively so & I came home with a sense of another milestone having been passed.
Ann thinks it was too soon and that I would be exhausted but I promised her I would get cabs both there and back home and that I would try to avoid a late sitting. Also I took a sandwich with me rather than going out at lunch time.
It was a slow start to the day but once we got started it was an interesting day. We finished at about 3:15 and I was offered a lift home which I gratefully accepted.
I was tired but not excessively so & I came home with a sense of another milestone having been passed.
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