The last few days have been pretty busy, with two hospital appointments and volunteering.
On Monday I had an appointment at the National Hospital for Neurology and Neurosurgery in Queens Square, London, to see the Physiotherapy team.
I was got up at 6.00 am by Augusta, my carer. After getting me out of bed, to the toilet, showered, dried and dressed, she was on her way. I then had my pills and breakfast, and then got ready for going out. Augusta and mum kept telling me it was cold outside, so against my better judgement I had mum help me on with a thin fleece jacket. By the time I got to London I was boiling hot, and cursing the jacket.
Anyway, the transport ambulance arrived a bit early at 7.30 am, and I get myself out there and the crew get me strapped in. There is already an old couple on board and we are due to pick up two other people on the way. The ambulance is being crewed by Mr Grumpy and Mr Moany this morning, as they are already complaining about how many people they have to pick up and that they don't have enough time.
We get going, and despite having a Sat-Nav, they are using their own navigation system, which seems to be based on pot-luck. They take a strange route right through the middle of Croydon, to get them to Thornton Heath to collect the next person. Once she is on board, we are heading up to Clapham, to collect the next person. It is clear that neither driver knows where the next pick up is, but they still don't consult either the Sat-Nav or a map.
We get to Clapham fine, but then proceed to drive down random streets looking for the address. One of the patients asks for the address and we are told it is a nursing home, so we all start looking out for it. After 15 minutes of going round in circles, the cry goes out that the home has been spotted.
When we get there the driver discovers that the lady we are collecting is in a wheelchair - this fact would be on his work sheet, as these show the patients mobility. However he explains, that he already has a "very large" electric wheelchair on board and therefore can't take her. I would point out that my powered wheelchair is actually smaller than most manual wheelchairs, and that if they had put me on board the ambulance better there would be plenty of room, but this doesn't seem like it would be very helpful at this point.
So after calling the transport office to say they can't take the lady, we get on our way again, listening to Grumpy and Moany, on how difficult their job is, how they are going to be late, etc.
They proceed by a very strange route into London and across the river. We go to UCLH first and drop off one of the patients, who is now late for her appointment. We then head down towards Queen Square, and stop at one of the small hospitals to drop off the old couple. Normally, with a reasonable crew on the ambulance, I would offer to get out here and go round the corner on my own, but as they are such a miserable crew, I decide they can take me to the front door.
I am dropped off at about 10.00 am, but still have 45 minutes before my appointment. I go off to find a toilet, and on the way find a man wandering round looking for the MRI Department. He is obviously finding it difficult to walk, so I tell him to stay where he is, and go and find out where he needs to go. Fortunately it is only a short walk down the corridor from where he is, so he holds the back of my chair and I go very slowly, and take him into the department. I'm also able to point out where he can get a cup of coffee when he comes out. So he is happy, and I've done my good deed for the day.
After I've been to the toilet, I go and check in at the Physio Department reception. No sooner am I checked in than Mark, my physio, comes through. His 10.00 am appointment hasn't shown up, so he will see me early.
We review a couple of exercises we did last time, and see how I am getting on with them. He also does some work on my calf muscles to loosen these. He advises that the tilt table, he had wanted to show me wasn't available.
I then told him about the fact that I have a stand up wheelchair on order, and we talk through that. He is really pleased by this news, as he know that I want to stand more regularly and can see that this is probably the best solution.
We discuss a few more things and then he suggests that we don't make another appointment for the time being, and see how I get on with the new chair and standing in that. If I have anything I want their help with I can ring and make an appointment, but if I haven't been in contact in the next 3 months they will discharge me. That seems fine with me.
I advise him that I will be videoing me standing in the chair to share on here, and offer top send these to him, so that they could use these for other patients, so they could see how they work. I also offered to be available to speak to patients about the chairs, as I had found myself that it was difficult getting user feedback, when I was looking into these chairs. We exchanged details.
After leaving and checking in for transport home, I was in the back of an ambulance and on my way home, about 11.10 am. After an uneventful journey home, and a happy driver, I was home about 12.30 pm, which was actually the time my appointment should have ended if we had done everything that we had intended to. By the time I was home, I was sweltering in my jacket.
After lunch, and checking my emails and Facebook, I rested up in my armchair for the rest of the afternoon.
On Tuesday, I had morning volunteering, teaching people how to use computers at a local community day centre, the Douglas Brunton Centre.
My regular 10.00 am guy came along, and after going over a few bits on his emails, he wanted to know about the costs of travelling to Sunderland. So I talked him through looking up rail and coach fares. It is sometime until he wants to travel, but he is pleased to see how it is dome.
At 11.00 am I have a new person. She is 90 and has never used a computer, but keeps being told she should learn, so she has come along to see what all the fuss is about. She can't think why she wants to use a computer but at least she is giving it a try. I spend about an hour talking to her and showing some things she might fine useful, and after the hour, she agrees to come back next week, and says that perhaps there is something to using the computer, but she still not convinced its for her.
You have to admire someone in their 90's trying out something completely new, and as I said if after a couple of weeks she doesn't want to continue at least she has tried and hasn't lost anything. But I'm pretty sure we can get her interested in using a computer, if only a little bit.
My normal 12.00 pm is away this week, so instead of waiting for the Dial-a-Ride bus to take me home, as its a nice day, I head off in my chair. Its about 2 miles home and takes about 30 minutes, and is quite a pleasant ride across Coulsdon Common.
In the afternoon, I do a few bits on my computer before resting up for another busy day tomorrow.
Wednesday starts at 6.00 am, sharp, as Augusta gets me up and ready for the day. After breakfast, I get ready for the transport ambulance to take me up to the Royal Free Hospital in Hampstead, North London.
The ambulance arrives at 7.15 pm. It isn't my normal driver, but a guy called Marcel. He's a great character, so I know I'm going to have a fun time getting to the hospital.
He hasn't got one of the big mini-bus size ambulances, but a smaller van, which can carry wheelchair passengers. This has a number of disadvantages. In heavy traffic, they can't use bus lanes as the larger ambulances can. People don't treat them the same as the larger ambulances, by letting them out at junctions.
For me, they do not have much leg room. Also being tall, my head is touching the ceiling in the van, which means every time we hit a pothole or speed hump, my head bangs against the ceiling. Being sat so high I cannot see out of the windows as these are low in the vehicles body.
Marcel is a good laugh, and we chat all the way to the hospital and arrive just after 9.00 am.
I make my way to the ward and check in. The ward has been extended to include some newly refurbished rooms. These all look very nice, but as one of the nurses explains, they don't have the staff to be able to use these new facilities.
The system of getting a cannula put in has changed. Instead of going and queuing up at a room the person doing the cannulation, will now come to you.
They are short of the regular staff today, so have drafted in a couple of extra staff from other wards to help out. The nurse who comes to complete my admission is one of the staff drafted in. She has some of my notes - I'm currently up to 5 files - but she doesn't have any of the up to date files. I offer to fill in the admissions form for her, something I regularly do for the regular staff, but she says she has to do it herself.
I don't often criticise nurses, as I think they do a very difficult job under very difficult circumstances, but to me this was just a reason for her to sit down for 20 minutes going through a form. She wasn't a healthcare assistant, but a fully qualified nurse, and surely she could be better employed than filling in a form.
However when it came to the form maybe she was actually over employed.
She asked my date of birth, and then advised that I was born a couple of days after her. She then said that made me 46 years old! I pointed out that no I would be the same age as her, 47.
She then asked my gender.
She asked my marital status, to which I replied "single". A minute later she asked for details of my next of kin. I said, "My mother, Mrs Rhoda Wood". To which she wrote on the form, my mothers name and then the word "Wife". I again had to point out her mistake.
When we had finished this, my respiratory physio, Christine, arrived and reviewed how I was doing with my BiPap machine. Christine, brought along a new style of mask for me to try out. Currently I have one with small "pillows" that fit into your nostrils, and the air is blown directly up the nostril. I find this very easy to fit, and a lot less intrusive than other masks I have used previously.
The new mask has similar, easy to fit straps but the actual mask fits over the end of the nose covering both nostrils. The air is blown in towards the nose rather than directly up the nose. I'll see how I get along with it, but always have the old mask if I don't like the new one.
Christine hasn't booked the Lung Function Tests but this isn't critical, so we will do that when I come in again in 6 weeks time. I email Christine when I am coming in, so that she can arrange things round the other appointments, and it saves me making extra visits. She does want to check my blood gases but we agree that I'll call her once my treatment has finished, and we can do it then.
By now it is almost 10.30 am and still there is no sign of the cannulation team. I ask the nurse and she says they have left the ward so she has to go off and find out what is happening. Another male nurse appears and offers to put in the cannula, which he does really well. I have very difficult veins, due to years of having cannula's put in, and usually even the experienced cannulation team struggle to get a needle in first time.
Just after 11.00 am they get me started on my treatment of 250 mg of Methylprednisolone. This only takes one hour, plus a 10 minute saline flush. I settle down to read my book.
After the drugs have finished, and the saline has flushed the tubes through, I am disconnected from the drip. The nurse doesn't seem to know if she can take my cannula out, and after a bit of encouragement I persuade her to go and ask. She comes back, and rather than take the cannula out carefully, she yanks it out, and lets it bleed everywhere, before putting a dressing on it. Fortunately I manage to avoid bleeding on my cloths, but do make a nice puddle for her clean up from the floor.
I ring Christine, and she is busy at the time - I ask if its with lunch, to which she laughs - and we agree to leave the blood gases until next time. My oxygen reading in my blood was 98% when they did my observations, so there's no problem at the moment.
On my way out I make an appointment for my next treatment in 6 weeks, and go down to wait in the transport department. Its about 12.30 pm when I get down there and a little before 1.30 pm before I get called.
I am going home in one of the small vans again, so I will need to have a word with the transport people to try to ensure that I don't get these again otherwise I'm going to get a sore head, or they will get dents in the top of all of their vans.
We have two people to drop off near the hospital, and then its straight home. It is very hot in the van, and I find out the other draw back to these. They don't have air-conditioning, or many opening windows.
We get home around 4.00 pm, and I am exhausted, and sticky in my sweaty cloths.
It has been a long few days, but the up side is that I now have only one hospital appointment in the next month.
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