Hello everybody, I'm still here even though it has been a while. I've had the second low dosage chemotherapy treatment but little progress on the housing situation.
Let me tell you about the treatment day. The good points of the day were that I wasn't as bruised as before, they had no trouble finding a vein that would play and so inserted the cannula and took the blood test sample from that; they had football on the television instead of the usual 'magazine' programme, which is usually about Celebrity and fashion, even the recipes, and as I am not interested in either, I find those programmes boring, also a friend who lives near the hospital came to keep me company, and we can and do keep talking for hours! My urine was olive green time not the bright green of last time. Probably because more is staying in my system, it is a cumulative treatment after all.
That evening I let my leg bag fill too much and had what I thought was strong bladder spasms, by the time I realised that it wasn't a spasm it was too late to get to the toilet and so I made a puddle on the floor. [That'll teach me to make sure the bag is emptied regular]
My blood test results are gradually improving so something positive is happening. Maybe next time the effects will last longer. Another indication of my body retaining more of the treatment is the steroid high I have been on for about a week. The feeling of being able to handle anything life throws at me and the overwhelming tiredness afterwards. Plus the steroid flush that I have been warned about but has never happened to me before, and, of course the insomnia, but I've attributed that to my mind overworking due to the imminent move.
The news that I will have to move has counteracted any positive effects of the treatment. I now drag my right foot continually even scraping it on the riser part of the stairs which is not safe. It takes me so much effort to climb the stairs I have no energy to do anything apart from sit on my dressing chair, and the thought that I have to descend the stairs doesn't help either. I have to cling to both handrails so cannot bring even the dirty washing downstairs. Oh the joy of having a bungalow.
My GP has referred me for a wheelchair and, after a discussion she is ordering an electric helper chair. I can't have a self-propelled model unless I want to spend my days travelling in circles and a power-chair would only be provided if I had either a ramped or level access. As Alan has been told by the cardiologist that he cannot push a wheelchair the electric version that is easier for him is the only solution
So I have no independence until I move and that is making me impatient, I have spoken to the Occupational Therapist since and from what she said I am working on an October moving date. Not ideal but I am left with no option really, the workings of Local Government departments are powered by pedals it seems. My MS physiotherapist is prodding them to move quicker if that helps. I bet it doesn't!
I haven't told my mother yet about having to move, some days she just isn't on this planet. Her planet must be light years away from mine because I never see her in transit. She is trying the care home again next week, which will give all the family a break from her ringing each of us for nothing.
Friday, 25 June 2010
Sunday, 13 June 2010
BLOOD TESTS AND ASSESSMENT
Well the woman from the Council is coming this Tuesday to see if access can be done for me or whether I will have move. I do need however to see the doctor, I feel as if I am imposing on the telephone.
Now it is Thursday and the woman came and went [useless] and her recommendation to her Manager is going to be that adaptations could not be done to this house and therefore the only option is to move to either a ground floor flat or a bungalow. Of course big mouth here mentioned Alan's ground floor flat, but we can't go there because of the dog, [bless her] that being one reason among many, so we have only one option, that is a bungalow.
This brings along two more problems - there are very few empty ones and those that are empty are in areas we don't want to live in and become members of the ethnic minority. Also when I asked her if there was any help with moving she said no, the thought of the logistics of moving has brought on another relapse, I am now finding stairs a 90% challenge whereas before they had rated a 50% challenge. So unless someone in the MS department knows of help I can apply for we are left facing a large bill for the packing and moving, when we get somewhere that is, we could be waiting about two years!
Don't you agree with me that the local authority are saving thousands by not doing any work and so giving me a moving grant to cover my costs is not too much to ask?
So now we are waiting for the outcome in writing. Once we get that we can say we want a bungalow and start the search hopefully with Medical Priority
My GP told me aswell, after consulting with her colleagues and MS specialists, that the bladder spasms are part of MS and can't be controlled with medication [thanks I really wanted to know that it would be with me for life]
The next treatment is on Tuesday when I see the vampire darts team again.
Now it is Thursday and the woman came and went [useless] and her recommendation to her Manager is going to be that adaptations could not be done to this house and therefore the only option is to move to either a ground floor flat or a bungalow. Of course big mouth here mentioned Alan's ground floor flat, but we can't go there because of the dog, [bless her] that being one reason among many, so we have only one option, that is a bungalow.
This brings along two more problems - there are very few empty ones and those that are empty are in areas we don't want to live in and become members of the ethnic minority. Also when I asked her if there was any help with moving she said no, the thought of the logistics of moving has brought on another relapse, I am now finding stairs a 90% challenge whereas before they had rated a 50% challenge. So unless someone in the MS department knows of help I can apply for we are left facing a large bill for the packing and moving, when we get somewhere that is, we could be waiting about two years!
Don't you agree with me that the local authority are saving thousands by not doing any work and so giving me a moving grant to cover my costs is not too much to ask?
So now we are waiting for the outcome in writing. Once we get that we can say we want a bungalow and start the search hopefully with Medical Priority
My GP told me aswell, after consulting with her colleagues and MS specialists, that the bladder spasms are part of MS and can't be controlled with medication [thanks I really wanted to know that it would be with me for life]
The next treatment is on Tuesday when I see the vampire darts team again.
Friday, 28 May 2010
MY EXPERIENCE OF THE VAMPIRE DARTS TEAM
Well what a week! I had the chemotherapy at the second attempt but it was still fun! Of course my veins don't ever want to co-operate. 4 attempts later and they did get some blood to test and I was left with 4 bruises on my left arm, one of which appears to travel down a vein leaving a nice elongated mark. Of course there was the essential urine test. The first being from the bag was too contaminated so this had to be taken from before the bag, as directly from the catheter as possible. A nurse was told to use a syringe on the valve, but I didn't realise it would leave a small hole in the valve. It wasn't until I stood up later that I noticed the damp patch [damp? It was more wet!], and, as is my want, I changed into my baggy, thin cotton trousers as soon as I returned home and so ended the day very soggily as well as bruised.
Fitting the cannula was awkward, and these were nurses who only did that all day, all week. A very tall surgical registrar wandered into the ward at that point and was instantly persuaded by the nursing staff to do the job, much blood everywhere later the cannula was fitted and taped into place.
The royal blue coloured infusion began. It probably took about two hours to drip into my vein [my watch needs a battery] then it was replaced by a bag of steroid solution so about 5 hours after I had first set out I was home and very tired. There were some people who had brought their partners but the said partners just sat patiently and read their newspaper. I couldn't help wondering just why they were there.
When I was finished infusing an appointment was made for 1 month later. Apparently the course consists of once a month for three months and then every three months until next April.
Luckily because the chemotherapy is only a weak solution the only side-effect, apart from the bruises, is bright green urine that fascinated me! I don't think people who haven't got a collection bag get the full effect of this colour change. They don't know what they are missing!
Unfortunately, my bladder spasm medication stopped working at the same time, I thought it just needed time to settle down but no, it got worse. The doctor has changed my medication and I hope it works because the local pharmacy that I use has changed their policy so do not deliver prescriptions unless requested by the doctor, [which it was] yet it still took 2 days to reach me!
So it is all quiet on the medical front at the moment until I go to see the vampire darts team in mid June. I am still falling to my right and waiting for the equipment and adaptations team to do the assessment with regard to the wheelchair etc, They gave me a date of July so I will have to see and miss all the decent weather,
Fitting the cannula was awkward, and these were nurses who only did that all day, all week. A very tall surgical registrar wandered into the ward at that point and was instantly persuaded by the nursing staff to do the job, much blood everywhere later the cannula was fitted and taped into place.
The royal blue coloured infusion began. It probably took about two hours to drip into my vein [my watch needs a battery] then it was replaced by a bag of steroid solution so about 5 hours after I had first set out I was home and very tired. There were some people who had brought their partners but the said partners just sat patiently and read their newspaper. I couldn't help wondering just why they were there.
When I was finished infusing an appointment was made for 1 month later. Apparently the course consists of once a month for three months and then every three months until next April.
Luckily because the chemotherapy is only a weak solution the only side-effect, apart from the bruises, is bright green urine that fascinated me! I don't think people who haven't got a collection bag get the full effect of this colour change. They don't know what they are missing!
Unfortunately, my bladder spasm medication stopped working at the same time, I thought it just needed time to settle down but no, it got worse. The doctor has changed my medication and I hope it works because the local pharmacy that I use has changed their policy so do not deliver prescriptions unless requested by the doctor, [which it was] yet it still took 2 days to reach me!
So it is all quiet on the medical front at the moment until I go to see the vampire darts team in mid June. I am still falling to my right and waiting for the equipment and adaptations team to do the assessment with regard to the wheelchair etc, They gave me a date of July so I will have to see and miss all the decent weather,
Sunday, 16 May 2010
BITS OF ME LOST IN TRANSIT
So I was having my low-dose chemotherapy this week was I? Anyone want to take bets on that happening? Of course I didn't! You all know by now that nothing in my life runs smoothly.
I set the alarm for 5 a.m to give myself plenty of time to get ready for the medicar/ambulance at 8 a.m. I even managed to put some make-up on even though I did make a few mistakes with the eye-liner but that has taught me to try applying the eye make-up first not last, doing it that way will make it easier to mop up my errors. I wasn't waiting too long for the medicar/ambulance either. 9 a.m saw me on the way with fully charged IPod and Nintendo, oh, and of course, the ever present family history magazine.
The ward I was taken to was a bay that had no beds but was full of armchairs with a nurses desk, there were three recliners that had already been taken and two 'old women' type in other words upright with wings. I was the only newbie so was placed in the seat nearest the desk and subsequently discovered that the upright chair did not stop me falling to the side.
Then began the pincushion time, I was asked which arm I wanted the blood taken from and after a discussion it was decided to use the left arm for the extraction of blood and the useless right one for the chemical infusion, plus the easy one, a urine test. The blood was sent to the lab, but nothing could be done until the results were returned. A while later, after two free coffees I learnt the infusion had to begin before noon and the lab had lost my blood plus results, a quite common occurrence apparently, so it was decided to take some more blood, this time from the back of my left hand and label this as urgent.
A doctor then appeared, asked me how I felt and did a check up, I told him that I had felt dizzy all weekend etc. and had dry cough, on this basis he decided that I most probably had an infection and so put the treatment back a week. I was told to come back next week and drink plenty of fluids between time. I knew the cough was because of de-hydration but he was the doc, well he had a security tag that said so.
This means two appointments at two hospitals in two days next week, although I haven't yet received a letter with the revised attendance date so I do hope transport has been arranged, I will ring them on the Monday if still no letter arrives.
The Wednesday appointment, at the other local hospital is for the bone density scan which probably will be affected by the chemotherapy especially being the following day, yet more problems and delays.
Why am I fretting about the whole situation when I know that all the chemotherapy can do is stop me getting worse? Even at this level of disability I know that I need a wheelchair and stair lift etc., and all I can do is to wait.
And there, friends, I will leave you. Join me again after the second attempt.
I set the alarm for 5 a.m to give myself plenty of time to get ready for the medicar/ambulance at 8 a.m. I even managed to put some make-up on even though I did make a few mistakes with the eye-liner but that has taught me to try applying the eye make-up first not last, doing it that way will make it easier to mop up my errors. I wasn't waiting too long for the medicar/ambulance either. 9 a.m saw me on the way with fully charged IPod and Nintendo, oh, and of course, the ever present family history magazine.
The ward I was taken to was a bay that had no beds but was full of armchairs with a nurses desk, there were three recliners that had already been taken and two 'old women' type in other words upright with wings. I was the only newbie so was placed in the seat nearest the desk and subsequently discovered that the upright chair did not stop me falling to the side.
Then began the pincushion time, I was asked which arm I wanted the blood taken from and after a discussion it was decided to use the left arm for the extraction of blood and the useless right one for the chemical infusion, plus the easy one, a urine test. The blood was sent to the lab, but nothing could be done until the results were returned. A while later, after two free coffees I learnt the infusion had to begin before noon and the lab had lost my blood plus results, a quite common occurrence apparently, so it was decided to take some more blood, this time from the back of my left hand and label this as urgent.
A doctor then appeared, asked me how I felt and did a check up, I told him that I had felt dizzy all weekend etc. and had dry cough, on this basis he decided that I most probably had an infection and so put the treatment back a week. I was told to come back next week and drink plenty of fluids between time. I knew the cough was because of de-hydration but he was the doc, well he had a security tag that said so.
This means two appointments at two hospitals in two days next week, although I haven't yet received a letter with the revised attendance date so I do hope transport has been arranged, I will ring them on the Monday if still no letter arrives.
The Wednesday appointment, at the other local hospital is for the bone density scan which probably will be affected by the chemotherapy especially being the following day, yet more problems and delays.
Why am I fretting about the whole situation when I know that all the chemotherapy can do is stop me getting worse? Even at this level of disability I know that I need a wheelchair and stair lift etc., and all I can do is to wait.
And there, friends, I will leave you. Join me again after the second attempt.
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