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.
Subscribe to:
Comments (Atom)