Day I typing. Now it's 8 weeks after the operation and the mind is still not up to full power and balance is a big problem. I need to use both handrails to navigate the stairs both upwards and downwards, and walking on carpet with shoes or slippers on is virtually impossible. I tend to drag my right foot so footwear tends to stick to the carpet pile and makes me trip.
The appointment at the MS Clinic is still a couple of weeks away and I can't wait! Will medication make me feel better? Will I be classed as fit enough to have the low-dosage chemotherapy or will I be having to endure daily injections? Will I have had all the tests before Xmas for nothing, and have to endure them all again because of the time lapse?
Day 2 typing. The fatigue is making life so difficult that even typing this has been taking too much effort, hence the long delay. Add to that the other factors of family life and you have a perfect recipe for brain retirement, and mine has with no warning.
I have also had the first catheter change which wasn't as bad as I expected [that phrase seems to be my mantra!]. This first time was done at the hospital but future changes every couple of months will be done by the district nurses. So I will have that to look forward to.
Day 3 typing. There has been a 3 day gap and now I just about feel able to finish this. I went to the MS clinic yesterday and all the tests were worth it, the consultant told me which sort of MS it is. Are you ready for these long words? It is called - Aggressive; Secondary Progressive; Remitting, Relapsing MS. (SPRR) Basically, every relapse [which is happening now] will leave me a bit more disabled every time. So the consultant's aim is to stop the present relapse and therefore reduce the percentage of disability which I will be left with.
The only drawback is to the treatment is being a pincushion. First though there are the steroids, but before I take them I have to be infection free, so its to the docs with a urine sample and waiting for the results, then the 5 days worth of steroids which were wonderful last time even if they did stop me sleeping. I felt normal, well whatever passes for normal in my case.
After the steroids I will be waiting for an appointment to have the type of chemotherapy [low dosage] the effects of which will be monitored by regular blood tests and, the consultant asked me. had I understood what the side effects were? I said I had, but being a glass half full type of person, I didn't mention to him that I had only skimmed them, I have read them fully since and if I believed that bad things happen to me I would be worried. It can cause hair loss, heart damage and liver damage aswell as discolouring the urine. But lets not dwell on those. what is more frightening is that if neither this nor the follow up treatment of possibly daily injections don't stop the present relapse. I will be a permanent wheelchair user in about 12 months time. [Well that's better than colliding with the ground, or at least threatening to, on a regular basis like now].
So at the moment I am feeling a mixture of emotions and very edgy. Thank goodness that the plasterer who has been doing some work in the house on behalf of the Housing Department was not a 'jobsworth', I was in no mood for anybody to say 'cannot do this because of …..................' In fact I don't feel like being a nice person at moment it takes too much effort, so I apologise to anyone [especially Alan and the dog} that I may offend until my mind is more rational.
Thursday, 18 March 2010
Wednesday, 17 February 2010
OPERATIONS AND THE JOY OF ANAESTHESIA
So there I was ensconced at last in hospital waiting for the epidural.
Because I was on the early 'shift' I was woken at 7am to have a shower and be 'prepared' which once again involved blood pressure etc., and the putting on of long white stockings that were very tight and went all the length of the leg. Not easy to put on with only one functioning hand I can tell you, but I was rescued by a Nurse, who having had lots of practice with these things made the fitting appear easy.
I was taken to the ante theatre along with my friend the IPod. Why did nurses who asked what I was listening to, seem nonplussed at The Eagles but were shocked at The Black Eyed Peas? Is it a case of judging a book by its cover and I was seen as too old for any music post 2000?
The anaesthetist then attempted to give me an epidural, which was not successful, as I had expected. My experiences with these type of procedures had always been problematic. 30 years previously the epidural attempt at the birth of my daughter had been unsuccessful but things had advanced hadn't they over the past 30 years? Not to the extent of making things easy where I'm concerned I'm afraid. The anaesthetist was extremely apologetic at the failure and had to give me a general anaesthetic. She was concerned about the effect on my MS but all I was bothered about was getting the blasted operation over with,
So that is how what should have been a quick trip to the theatre turned into a marathon sleep-in. I woke at 3pm too late for lunch and wanting a drink. The nurses fetched me a sandwich and made me a drink. Within half an hour of the grand awakening the anaesthetist was once again at my bedside checking to see if I was all right, she did mention that I would feel the after effects for quite a while. What I didn't realise was that she wasn't talking about the actual operation but the MS. Thinking about the whole event later I realised that my long sleep had made all the staff worried, it just wasn't normal! Huh-huh? Normal and me have never made good bed-fellows.
Now I had the chance for a good rest, I had my book, my IPod and my phone which was not now banned. There was one problem though, in the rush to pack I had forgotten my phone charger so no-one could ring me, I had to make quick calls and turn off the phone between. Just to add to the problems I was trying to find a picture on the IPod when the blasted thing locked on me. I found out a couple of days later that running out of power does that. Clever isn't it? New technology at its best!
Of course because of my extra long kip and the uncomfortable stockings I never slept that night, at least I was able to read using my individual light, and read I did, finishing my book by the end of the night, The days did not start as early as I remembered but even so the days were long. I was glad to be sent home after lunch.
Once again transport had to be arranged and the snow and ice were still on the roads. I was taken to the discharge lounge to await my ambulance or taxi. This time I didn't have any entertainment so had to just observe other people to pass the time, a pity there was only two men to watch, they seemed to be either down & outs getting warm or substance abusers, not much to look at there then. My ambulance arrived and the driver told me there was one other pick up. That seemed the only time he wasn't complaining about the driving conditions. After we dropped off the other lady I was questioned about the incline of my road and the access to it. Although moaning about the driving he did help me too and from the ambulance, and, of course Alan met me at the ambulance. I was so glad to be home!
My first priority was to charge up my phone and to connect the IPod to the laptop so that would charge. I felt fine, I hadn't been in hospital long enough to feel disorientated when coming home. The next day however I understood what the anaesthetist had meant about feeling ill, the operation site was fine, but I had ran into a MS relapse at over 100 miles per hour.
Because I was on the early 'shift' I was woken at 7am to have a shower and be 'prepared' which once again involved blood pressure etc., and the putting on of long white stockings that were very tight and went all the length of the leg. Not easy to put on with only one functioning hand I can tell you, but I was rescued by a Nurse, who having had lots of practice with these things made the fitting appear easy.
I was taken to the ante theatre along with my friend the IPod. Why did nurses who asked what I was listening to, seem nonplussed at The Eagles but were shocked at The Black Eyed Peas? Is it a case of judging a book by its cover and I was seen as too old for any music post 2000?
The anaesthetist then attempted to give me an epidural, which was not successful, as I had expected. My experiences with these type of procedures had always been problematic. 30 years previously the epidural attempt at the birth of my daughter had been unsuccessful but things had advanced hadn't they over the past 30 years? Not to the extent of making things easy where I'm concerned I'm afraid. The anaesthetist was extremely apologetic at the failure and had to give me a general anaesthetic. She was concerned about the effect on my MS but all I was bothered about was getting the blasted operation over with,
So that is how what should have been a quick trip to the theatre turned into a marathon sleep-in. I woke at 3pm too late for lunch and wanting a drink. The nurses fetched me a sandwich and made me a drink. Within half an hour of the grand awakening the anaesthetist was once again at my bedside checking to see if I was all right, she did mention that I would feel the after effects for quite a while. What I didn't realise was that she wasn't talking about the actual operation but the MS. Thinking about the whole event later I realised that my long sleep had made all the staff worried, it just wasn't normal! Huh-huh? Normal and me have never made good bed-fellows.
Now I had the chance for a good rest, I had my book, my IPod and my phone which was not now banned. There was one problem though, in the rush to pack I had forgotten my phone charger so no-one could ring me, I had to make quick calls and turn off the phone between. Just to add to the problems I was trying to find a picture on the IPod when the blasted thing locked on me. I found out a couple of days later that running out of power does that. Clever isn't it? New technology at its best!
Of course because of my extra long kip and the uncomfortable stockings I never slept that night, at least I was able to read using my individual light, and read I did, finishing my book by the end of the night, The days did not start as early as I remembered but even so the days were long. I was glad to be sent home after lunch.
Once again transport had to be arranged and the snow and ice were still on the roads. I was taken to the discharge lounge to await my ambulance or taxi. This time I didn't have any entertainment so had to just observe other people to pass the time, a pity there was only two men to watch, they seemed to be either down & outs getting warm or substance abusers, not much to look at there then. My ambulance arrived and the driver told me there was one other pick up. That seemed the only time he wasn't complaining about the driving conditions. After we dropped off the other lady I was questioned about the incline of my road and the access to it. Although moaning about the driving he did help me too and from the ambulance, and, of course Alan met me at the ambulance. I was so glad to be home!
My first priority was to charge up my phone and to connect the IPod to the laptop so that would charge. I felt fine, I hadn't been in hospital long enough to feel disorientated when coming home. The next day however I understood what the anaesthetist had meant about feeling ill, the operation site was fine, but I had ran into a MS relapse at over 100 miles per hour.
Thursday, 28 January 2010
THE FUN AT YULETIDE AND JUST AFTER
So I thought I had over two weeks break did I? I had not taken my mother and the weather into account!
I did, however, have a break over Xmas but not the New Year. My mother decided to fall and break her arm on New Year's Eve, not due to the icy conditions but to her own stubbornness, insisting she could walk OK on her own within her flat. Of course being New Year's Eve, the A&E was extremely busy, so she was sent home after a few hours with a cast on her arm but no investigation into the cause of the fall. Needless to say she fell again a few days later, and my daughter was once again called upon to travel in the ambulance and wait in the busy A&E. This tine they have kept her and, hopefully, moving her to a home when she is released but they seem to listen to her when she says 'I'll manage' to everything when she obviously cannot.
We were, as a family, dealing with this emotionally when I received a letter to be an in-patient in the Urology department, As usual, transport was a problem, after many telephone calls it was decided that one ambulance could be used, I would be collected for my MS clinic appointment and after that taken straight to the Urology ward. So I did have a short Xmas break and logic was used with regard to the transport. But does anything in my life ever go smoothly? About as smooth as sea during a storm.
This time it was the weather, A heavy fall of snow the day before my appointments prompted me to ring and check about the next day's transport, and, yes, as I had thought, there would be emergency ambulances only due to the snow and many side roads being impassable. So I didn't know when I would get to the MS clinic for the results of the many scans and tests, or when I would be having my operation in Urology.
The next day, the day I should have gone as an in-patient, I received a telephone call from the ward asking where I was. I explained about the transport situation and was told that they would still pick me up as I was going to be an in-patient but she would check. She rang me back and told me I would be collected within the hour, of course this meant panic packing. I had been told that it would only be for one night so I didn't need much. Silly girl believing everything you are told.
The ambulance arrived at Out-patients at about 12.15 pm. Just as the MS clinic had closed but did I expect to be able to fit two departments into one visit? No, I had learned by now that I'm not that lucky!
I was left sitting all day in the day room and nobody going past to remind them I was there, of course the wheelchair was not one that I could wheel so I was dependant totally on other people. Eventually, at after 5 pm, a sister walked past and I managed to attract her attention which set all the wheels in motion. About 10 minutes later the consultant came to see me and told me I was first on the list the next morning. I was then taken to the ward and given a bed, settled into it then given loads of tests - blood pressure, blood, and temperature. I was given the first of daily injections into my stomach that prevents the danger of clotting. Surprisingly there was no pain from this injection probably because of the amount of fat!
It was explained to me that the ward staff had not known I was there despite telling the desk upon arrival, but unfortunately in a different part on the ward. I blame the porter!
The anaesthetist came to see me and told me that she intended to use an epidural anaesthetic rather than a general because the recovery time was quicker and would not cause MS problems like a general would. Obviously she didn't know my track record. Would this be as simple as was made out?
We shall find out next time.
That takes me and you up to the operation time, the next report will tell you all about the operation and the after effects plus what is now happening with my MS.
I did, however, have a break over Xmas but not the New Year. My mother decided to fall and break her arm on New Year's Eve, not due to the icy conditions but to her own stubbornness, insisting she could walk OK on her own within her flat. Of course being New Year's Eve, the A&E was extremely busy, so she was sent home after a few hours with a cast on her arm but no investigation into the cause of the fall. Needless to say she fell again a few days later, and my daughter was once again called upon to travel in the ambulance and wait in the busy A&E. This tine they have kept her and, hopefully, moving her to a home when she is released but they seem to listen to her when she says 'I'll manage' to everything when she obviously cannot.
We were, as a family, dealing with this emotionally when I received a letter to be an in-patient in the Urology department, As usual, transport was a problem, after many telephone calls it was decided that one ambulance could be used, I would be collected for my MS clinic appointment and after that taken straight to the Urology ward. So I did have a short Xmas break and logic was used with regard to the transport. But does anything in my life ever go smoothly? About as smooth as sea during a storm.
This time it was the weather, A heavy fall of snow the day before my appointments prompted me to ring and check about the next day's transport, and, yes, as I had thought, there would be emergency ambulances only due to the snow and many side roads being impassable. So I didn't know when I would get to the MS clinic for the results of the many scans and tests, or when I would be having my operation in Urology.
The next day, the day I should have gone as an in-patient, I received a telephone call from the ward asking where I was. I explained about the transport situation and was told that they would still pick me up as I was going to be an in-patient but she would check. She rang me back and told me I would be collected within the hour, of course this meant panic packing. I had been told that it would only be for one night so I didn't need much. Silly girl believing everything you are told.
The ambulance arrived at Out-patients at about 12.15 pm. Just as the MS clinic had closed but did I expect to be able to fit two departments into one visit? No, I had learned by now that I'm not that lucky!
I was left sitting all day in the day room and nobody going past to remind them I was there, of course the wheelchair was not one that I could wheel so I was dependant totally on other people. Eventually, at after 5 pm, a sister walked past and I managed to attract her attention which set all the wheels in motion. About 10 minutes later the consultant came to see me and told me I was first on the list the next morning. I was then taken to the ward and given a bed, settled into it then given loads of tests - blood pressure, blood, and temperature. I was given the first of daily injections into my stomach that prevents the danger of clotting. Surprisingly there was no pain from this injection probably because of the amount of fat!
It was explained to me that the ward staff had not known I was there despite telling the desk upon arrival, but unfortunately in a different part on the ward. I blame the porter!
The anaesthetist came to see me and told me that she intended to use an epidural anaesthetic rather than a general because the recovery time was quicker and would not cause MS problems like a general would. Obviously she didn't know my track record. Would this be as simple as was made out?
We shall find out next time.
That takes me and you up to the operation time, the next report will tell you all about the operation and the after effects plus what is now happening with my MS.
Saturday, 16 January 2010
FLOWERS ON ICE
Right. to tell you all about what a Contrast MRI is and involves along with the transport saga that is endless, and, of course, weather dependant.
The Urology department appointment was eventually made for the week after the MRI and the same week as my ECG appointment, convenient but tiring for me. The only scanner they had free for the MRI was at the local cancer hospital so the appointment was there, it's a nice place although I wouldn't like to be a patient there, for obvious reasons. I was taken to the scan department by wheelchair and shown into a changing room where I had two gowns to put on, one with the opening at the back and the other with opening at the front, to preserve modesty. I had researched the process thoroughly and so knew that it involved more needles, not something I was looking forward to! I was put into the tunnel machine with the space helmet like before and the a cannula put in my arm at the inner elbow spot, although they had a struggle as the vein wasn't compliant as usual.
The cannula was connected to a syringe loaded with a solution containing the same type of silver as is used to coat CDs, also the cannula would be operated by computer from the staff 'safety' area where they operated the scanner from. First, there was the normal thudding noise from the scanner as it traversed my brain and spine then about 20 minutes later the machine stopped and the syringe attached to the cannula activated, a slight stinging sensation was felt in my arm and then the scanner noises began again.
Afterwards the fun began again – I was wheeled back to the dressing room and promptly forgotten about, I sat for a while like a good girl then realised it was the self-propelling kind with that had large wheels on the outside. So Pat decided she could move herself to the reception area to wait for the passenger transport. Foolish woman! Only 1 hand/arm had a little bit of strength! So what happened? Circles is what happened. At first I could only move in circles but soon figured out that if I gripped the wheel tightly, or as tight as possible with my right hand I could achieve a sort of forward motion, it wouldn't have fooled a policeman looking for drunk drivers but I was going in the right direction f0r a change, that is until I encountered a door! There is not enough strength in my right arm to open a Pull door so obviously I always use my left hand. The only movement I achieved was going backwards as I pulled the door open but ended up too far backwards and unable to keep the door open whilst I propelled myself through the opening. After a few attempts a member of the admin department took pity on me and pushed the wheelchair with me in it back to the main reception.
The reception area is also the snack-bar seating area and I love to eavesdrop whilst waiting! As I said earlier this was the specialist cancer hospital and there was some people whom I couldn't help pitying but others were the ones who broke every rule for visiting or accompanying patients. One in particular caught my ear – A woman accompanying her daughter who both looked like talk show rejects; the mother (about my age) was regaling the person next to her with her ailments over the past twenty years, along with friends and relatives death details, this poor neighbour was bald, obviously because of chemotherapy, and was sat looking very embarrassed but was too polite to tell the woman to shut up. It amused me that we will endure a person with no forethought like that but all complain when the bins aren't collected on the usual day.
After they had gone along came another woman my age with her very frail, elderly mother who had obviously got to an age where she decided she could speak her mind and no-one would be offended. I cannot now remember what she said but it amused me at the time, I commented upon her pretty ring and she proceeded to be give me the history and provenance of all eight or nine rings she was wearing. She obviously still had all her faculties even though she turned out to be nearer 90 than 80.
On the journey home I couldn't help pondering on the fireworks if the older lady had been present earlier when the younger one had been loudly giving all the morbid details of her life. Now THAT would have been entertaining!
Five days later I was at the out-patents again, this time to Urology for my pre-operation assessment, basically it was a series of tests to ensure I was fit enough to have the operation whereas all the neurological tests of the past few weeks had been to make sure I was fit enough for the modified chemotherapy treatment I would most likely receive for my MS. So I was enduring loads of tests [with needles] to make sure I was fit enough to be made fit! (Well fittish anyway) So once again blood was extracted and my blood pressure taken, also the operation was explained [to be honest I would rather not know what people are going to do to me whilst I'm unconscious] I came away with even more leaflets about the procedure, what would happen afterwards, and the benefits of epidural anaesthetic which is what I would be having. As this was only about a week before Xmas no admission date could be given, not that I was desperate to be operated upon.
A telephone call the same day did not help. The local housing authority rang in response to my complaint, good to get a response even if it had taken a solicitor writing to them to get that response. The story is of no-one being prepared to admit to their mistakes, my bathroom and kitchen were 'modernised' during September and October 2008 and as a result of bad workmanship and being ignored for 6 months the leak has now created mould on my Living Room wall therefore the new wallpaper put on in December 2008 needs replacing and the new kitchen needs an entire corner replacing but the housing department thinks I should do the decorating but as I didn't cause the problem why should I pay? Anyway I digress, the house is another problem that will be solved when it is solved. [forget it for now woman and deal with your health at moment]
I was back at the hospital again the next day to have my heart checked, thank goodness it was the last test. I would now have just over 2 weeks with no hospital attendance, time to breathe and even smell the flowers as they say. But it's December and there are not any flowers to smell!
The Urology department appointment was eventually made for the week after the MRI and the same week as my ECG appointment, convenient but tiring for me. The only scanner they had free for the MRI was at the local cancer hospital so the appointment was there, it's a nice place although I wouldn't like to be a patient there, for obvious reasons. I was taken to the scan department by wheelchair and shown into a changing room where I had two gowns to put on, one with the opening at the back and the other with opening at the front, to preserve modesty. I had researched the process thoroughly and so knew that it involved more needles, not something I was looking forward to! I was put into the tunnel machine with the space helmet like before and the a cannula put in my arm at the inner elbow spot, although they had a struggle as the vein wasn't compliant as usual.
The cannula was connected to a syringe loaded with a solution containing the same type of silver as is used to coat CDs, also the cannula would be operated by computer from the staff 'safety' area where they operated the scanner from. First, there was the normal thudding noise from the scanner as it traversed my brain and spine then about 20 minutes later the machine stopped and the syringe attached to the cannula activated, a slight stinging sensation was felt in my arm and then the scanner noises began again.
Afterwards the fun began again – I was wheeled back to the dressing room and promptly forgotten about, I sat for a while like a good girl then realised it was the self-propelling kind with that had large wheels on the outside. So Pat decided she could move herself to the reception area to wait for the passenger transport. Foolish woman! Only 1 hand/arm had a little bit of strength! So what happened? Circles is what happened. At first I could only move in circles but soon figured out that if I gripped the wheel tightly, or as tight as possible with my right hand I could achieve a sort of forward motion, it wouldn't have fooled a policeman looking for drunk drivers but I was going in the right direction f0r a change, that is until I encountered a door! There is not enough strength in my right arm to open a Pull door so obviously I always use my left hand. The only movement I achieved was going backwards as I pulled the door open but ended up too far backwards and unable to keep the door open whilst I propelled myself through the opening. After a few attempts a member of the admin department took pity on me and pushed the wheelchair with me in it back to the main reception.
The reception area is also the snack-bar seating area and I love to eavesdrop whilst waiting! As I said earlier this was the specialist cancer hospital and there was some people whom I couldn't help pitying but others were the ones who broke every rule for visiting or accompanying patients. One in particular caught my ear – A woman accompanying her daughter who both looked like talk show rejects; the mother (about my age) was regaling the person next to her with her ailments over the past twenty years, along with friends and relatives death details, this poor neighbour was bald, obviously because of chemotherapy, and was sat looking very embarrassed but was too polite to tell the woman to shut up. It amused me that we will endure a person with no forethought like that but all complain when the bins aren't collected on the usual day.
After they had gone along came another woman my age with her very frail, elderly mother who had obviously got to an age where she decided she could speak her mind and no-one would be offended. I cannot now remember what she said but it amused me at the time, I commented upon her pretty ring and she proceeded to be give me the history and provenance of all eight or nine rings she was wearing. She obviously still had all her faculties even though she turned out to be nearer 90 than 80.
On the journey home I couldn't help pondering on the fireworks if the older lady had been present earlier when the younger one had been loudly giving all the morbid details of her life. Now THAT would have been entertaining!
Five days later I was at the out-patents again, this time to Urology for my pre-operation assessment, basically it was a series of tests to ensure I was fit enough to have the operation whereas all the neurological tests of the past few weeks had been to make sure I was fit enough for the modified chemotherapy treatment I would most likely receive for my MS. So I was enduring loads of tests [with needles] to make sure I was fit enough to be made fit! (Well fittish anyway) So once again blood was extracted and my blood pressure taken, also the operation was explained [to be honest I would rather not know what people are going to do to me whilst I'm unconscious] I came away with even more leaflets about the procedure, what would happen afterwards, and the benefits of epidural anaesthetic which is what I would be having. As this was only about a week before Xmas no admission date could be given, not that I was desperate to be operated upon.
A telephone call the same day did not help. The local housing authority rang in response to my complaint, good to get a response even if it had taken a solicitor writing to them to get that response. The story is of no-one being prepared to admit to their mistakes, my bathroom and kitchen were 'modernised' during September and October 2008 and as a result of bad workmanship and being ignored for 6 months the leak has now created mould on my Living Room wall therefore the new wallpaper put on in December 2008 needs replacing and the new kitchen needs an entire corner replacing but the housing department thinks I should do the decorating but as I didn't cause the problem why should I pay? Anyway I digress, the house is another problem that will be solved when it is solved. [forget it for now woman and deal with your health at moment]
I was back at the hospital again the next day to have my heart checked, thank goodness it was the last test. I would now have just over 2 weeks with no hospital attendance, time to breathe and even smell the flowers as they say. But it's December and there are not any flowers to smell!
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