Yesterday was one of my regular visits to the Royal Free Hospital at Hampstead, North London.
The day started at 5.30 am when my carer, Margaret, came to get me up and ready for the day.
Usually Margaret doesn't come to me until about 8.00 to 8.30 am, which is later than I would really like her to come, but she has young children who she likes to get up and ready for school before coming, so it is sometimes difficult for her to be earlier. I'm prepared to put up with getting up a bit later because Margaret is so good at her job. I can always rely on her, she does a good consistent job and will often do extra little things for Mum and me, outside of her normal caring role. But when I have an appointment or am going out, she will come early so I am ready for my day. This morning she will come to me then go home and get her children up, before going our to do the rest of her calls.
Anyway, Margaret has me up washed and dressed by 6.00 am and this means I can have my pills, breakfast and a cup of tea before the transport turns up. The regular driver, who picks me up lives locally and can come from 6.00 am onwards but he'll wait for me to have my breakfast, as officially he shouldn't be here before 7.00 am but if we get going early we can avoid lots of the traffic through London before the rush hour starts.
The driver, Dave arrives at 6.40 am, and I am all ready, so once he has strapped my wheelchair down we get on our way. This morning we have to pick up another patient in Crystal Palace, so we go a slightly different way to normal. We go straight up through Croydon, to Thornton Heath and then pass the home of English football, Selhurst Park, before going up to Crystal Place and collecting the other patient.
The Home of English Football - Selhurst Park
Once we have picked him up we head up to Herne Hill, avoid Brixton and come out just south of the Oval Cricket Ground, and then head along the south bank of the river Thames before crossing at Waterloo Bridge. The view was no where near as good as this picture as it was a miserable day.
The view East from Waterloo Bridge
We go through the Strand Tunnel and then up through Holborn and onto Camden Town and up to the Hospital on the outskirts of Hampstead Heath.
The Royal Free Hospital
Dave is a very friendly driver and chats to us both most of the way up to the hospital. The guy we picked up is a 31 year old guy who has been very ill but is now on the road to recovery. He has a great outlook on life and whether he has developed this since being ill or has always had it, he sounds like he has the right attitude to get his life back on track, and to do the very best by his young son. I wish him well.
We arrive at the hospital just before 8.30 am, so it has been a very quick journey and the traffic has been good. After my customary visit to the toilet I make my way to the ward.
The ward I go to is on the 2nd floor and is called PITU, which stands for Planned Investigations and Treatment Unit. It is a ward for people like me who are going in for the day, or a few days, whether for treatment or small investigations or tests, but don't need to stay in hospital overnight. This means when I book my next date for treatment, I know that I'll be able to go in that day, because there no patients staying in long-term. Most of the patients receive their treatments in a recliner chair, with only a few beds available for people who specifically need them for minor procedures. This ward has been in operation for about 6 years, and it seems to work very well. Certainly in all that time, I've never had a treatment date cancelled, and I don't have the stress of phoning to see if beds are available before going in and the uncertainty of when I might get in. However it is a very busy ward and the nurses have to work very hard.
I book in and they make a space for me, as I stay in my wheelchair, which is easier than being hoisted into their chairs, and means I can move around on my own. Once I have been helped out of my fleece, I go to queue up to get my cannula put in and have a blood test. Usually, I'm a bit later getting to the hospital, so there is a long queue of people waiting for their cannula's, but this morning there is only one person ahead of me.
As I wait a nurse called Tinesha, comes and congratulates me on Crystal Palaces promotion to the Premier League. We always have a good chat about football.
The guy ahead of me is seen quickly, and in I go. I've seen this Phlebotonist before and know he is very good. He finds a vein easily and gets the cannula in and draws off the necessary blood for the tests, and then secures the cannula. I'm out in 10 minutes and already there is a queue of 4 or 5 people.
When I get back to my space one of the nursing assistant, Steph, checks my blood pressure, pulse, temperature and blood oxygen levels, which are all good. She then gives me the swabs for checking MRSA, which they do to all patients. One is a nasal swab, and the other is a groin swab, so I go to the toilet to do this, which is fortunate as I need to pee again. I can see it's going to be one of those mornings.
I'm offered a cup of tea, and the lady knows me well and just checks its still no sugar and very strong, with only a little milk.
After that I start reading my book whilst I wait for my drugs. I use a Kindle, as I find this much easier to handle that books, and is much more convenient to carry. When I first got my Kindle one of my friends sent me approximately 750 'free' books. There is a good range of books many by authors I have never read before, over a good range of genre. Currently I am reading the Alex Cross series of books by James Patterson, an author I'd never read before. They are very easy to read, and very fast paced. I am coming to the end of 'Roses are Red' and finish the last 80 or so pages, and easy start the next in the series, 'Violets are Blue'.
About 9.30 am, Karen, one of the nurses comes with my drugs - 250mg of Methylprednisolone - and hooks me up. They are very good on the ward. The night before you come in they get a doctor to do all the prescriptions for the patients coming in the next day, so they can have these ready early next morning. It only takes an hour for this to go through, and then 10 minutes for the saline flush, and I'll be finished.
Once it has all gone through, Lorna, another of the nurses comes and disconnects me and takes the cannula out. I make a huge fuss about her pulling the hairs on my arm out as she takes the dressing off, which makes her laugh - a lot! She knows I'm only joking.
I've known Lorna, and most of the other nurses for years. I have been coming to this hospital for about 15 years and have seen my consultant, Prof. Chris Denton, for all that time, and although some of his team change, there are some people who have been with him all that time. The nurses who work on PITU ward, are mostly the same nurses who used to work on the specific Rheumatology ward, but this has now been closed as most of the patients can be seen on PITU, or if they require longer stays as in-patients, they share a ward with the cardiac unit.
Prof. Chris Denton - a nicer doctor you will not meet
I tell Lorna about my recent trips to NHNN and about standing there with the physio's in the standing frame. She rushes off and tells all the nurses and very soon I seem to be surrounded by all the nurses from the ward, who are jumping up and down, smiling, clapping and shaking my hand. Most embarrassing.
It is now just before 11.00 am and Lorna tells me that the doctors want to see me and they will be there soon. Usually I only see the doctors if I need to, and we have an arrangement where I call the Professor's secretary and she puts me on his list, or if they want to see me. I'm first on their list to be seen.
I have another toilet break whilst I wait.
Just after 12.00 they turn up and call me in. Unfortunately the Professor is not there, but I see his number 2, Dr Wong, who is a really nice guy. He asks me how I am, and we discuss a few things.
He was the doctor who referred me to the Dermatologist in late 2011, about the problems I was having with the skin on my legs and the swelling in my legs and feet. He was very interested to hear that having the pressure stocking had made so much difference to me, and suggested to his colleagues there that in future they should be more pro-active in referring people if they have similar problems. I said that from my experience, the Dermatologists in my local hospital did not know enough about my conditions or how they might effect me. However as soon as I saw the Dermatology Consultant at the Royal Free, she recognised the problem straight away and knew the solution was the pressure stockings. In my opinion that was because she was more aware of my conditions.
I then told Dr Wong about my trips to NHNN and the standing with the physio's. Although the response was not quite so exuberant as with the nurses, there was still a lot on happy faces about.
Having seen the Doctors, I went and got my jacket back on, off to the toilet, again, and then headed off to the transport lounge to await an ambulance home.
Usually the transport lounge is a pretty dull place, full of people who had had long days of treatment, tests or clinic appointments, who are worn out waiting to get home. No one speaks, except to moan about how long they have to wait, and its quite a horrible place to sit. Anyway after sitting there for about 10 minutes an old lady comes and just sits there talking to everyone, cracking jokes, and generally having a good time.
I quietly thought to myself that she'll be in my ambulance home, and then she mentioned where she lived, and its about 5 miles down the road from me.
About 1.30 pm a driver came in and asked me if I can get into one of the smaller vans. I said I could so he said he'd take me. I went off to the toilet, AGAIN, and then went out to meet him at the front of the hospital. I was fully expecting to see the old lady there, but there was no sign of her. So I said to the driver that there was someone in the transport lounge waiting to go in the same direction, and he went back to see if she could come with us. They were only going to put her in another ambulance.
So we had a jolly trip home, with a few good laughs as we went. It makes a nice change to have company both ways as usually I have the ambulances to myself, and to have people who are ready to have a chart and a laugh. It certainly makes the journeys seem much quicker.
I can't say what route we used to get home as the only draw back with the smaller vans is that my heads touching the ceiling and the windows are so low, all I can see is the road down by the side of the van.
Anyway, we made good time and were home about 3.30 pm. And even better it managed to stop raining so I could get out of the ambulance and up the drive, indoors in the dry.
After going to the toilet, notice a theme here, I get into my armchair, and following a cup of tea and a couple of ginger biscuits, I'm out like a light.
I wake up about 5.30 pm and get back into my wheelchair, and get ready for dinner. On days when I've been out like this, because we can't always predict what time I'll be home, Mum usually goes over the Chip Shop. So tonight I have Steak and Kidney Pie and large chips, and shock horror, I can't finish all my chips. That's unheard of.
After dinner, my carer, Shola, who usually comes to me in the evening, comes at about 7.15 pm. She takes me to the toilet and then gets me ready of bed, and then puts me in my armchair, so I can watch television. Whilst Shola is taking off my pressure stockings, she notices I have a blood shot eye. I accuse her of having hit me whilst I wasn't looking.
This must have happened whilst I was asleep this afternoon, as no one mentioned it at the hospital. Anyway it's not to bad.
My 'Evil' Eye
After watching some television and catching up on the news, Mum helps me to bed at 10.30 pm. It's been a long day but a worthwhile one.
I go for these treatments every 6 weeks, but usually try to see other doctors from the other teams who look after me at the same time, to avaoid making to many trips backwards amnd forwards.
As a foot note, usually having Methylprednisolone this can upset my blood sugars for about 24 hours afterwards. A side effect of this is that usually after having had this I need to go to the toilet during the night, sometimes 2 or 3 times. Bearing how much I'd needed to go all day, it didn't bode well for the night. Amazingly I slept right through to 8.25 am this morning, until Margaret came and got me up. But man, did I need to go!!!
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