Surgery 2021 – #6 of 6: Life at home

Over the past few weeks, I have been describing my recent hospital stay in Oxford and the care I received after I was discharged. I must backtrack now to my actual coming home.

On the day of my discharge from hospital, my personal assistant and good friend Mary came over to Oxford with a friend from church to pick me up. General confusion and a lack of communication meant they had to wait patiently for an hour in reception before I finally showed up, but I did eventually get home.

I couldn’t climb up and down stairs to and from my bedroom so, prior to my coming home, my bed had been moved down to the ground-floor lounge and the furniture re-arranged accordingly.

Mary had moved in to look after me before I had surgery as I was already struggling and she stayed to care for me after my return from hospital.

After my operation last summer, for many weeks I was not allowed to put any weight at all on the leg which had undergone surgery. This time I was allowed to put some weight on the operated leg but I wasn’t allowed to bend and, at first, some actions, such as getting in and out of bed, were painful and difficult. Having my bed in the sitting room meant that at least I could get to the downstairs cloakroom under my own steam and without having to worry about negotiating any steps. After a while, movement gradually became easier and less painful.

Mary is still looking after me now like the absolute star she is. At first, she even had to help me get dressed. I can manage that by myself again now, but she is still doing most of the cooking, washing and much more.

So, where am I now?

The X-ray I had a few weeks ago shows that all is progressing as it should. The surgeon I saw in out-patients at Oxford told me that my leg was now so strong, I could run a marathon. I had to point out that I couldn’t do that even before the operation, so I’m very unlikely to be able to do it now!

I am not allowed to bend for six months, so many items in my kitchen, office and bedroom will need to be re-arranged. I won’t be able to put shoes on without help, either.

I have, however, now cooked two meals and been none the worse for it.

I am also sleeping upstairs once again. Mary dismantled the bed and carried it upstairs and then put the furniture back in place. You see what I mean? What a star! I can only walk up the stairs toddler-fashion, but it is wonderful to be back in my own room.

I still walk best using my trusty Zimmer frame, but I can manage with one or, sometimes, two crutches. Walking without any aids still leaves a lot to be desired but I am working on it!

So, this time round, I am making real progress. Mary and I are working towards me “taking back control” of my life.

I look forward to it. Oh happy day!

Surgery 2021 – # 5 of 6: Follow-Ups & Mix-Ups

In the course of recent blogs, I have been recounting my adventures in the Manor Hospital in Oxford, where I had surgery to replace my replacement hip and remove a shattered femur which had failed to heal after an earlier operation.

When I was discharged from the Manor, I was told that I would be given an appointment two weeks after the operation to come back to have my dressings checked.

A couple of days before this appointment was due, I received a voicemail telling me that this would be a telephone consultation and not to come in to the hospital. This seemed a bit odd to me, so I rang them. I was once again told not to come in and that a doctor would call me.

On the appointed day I waited and I waited. No one rang.

The next day, I rang the Manor Hospital to find out what was going on. The person answering my call could find no note on their system to indicate what should have happened with my case the previous day. For that matter, there was no note on the system to indicate that the surgeon had seen my previous message enquiring what was going on.

At around 5 pm, one of the surgeons called. He didn’t know how the mix-up had happened but he assured me that they had definitely been expecting me to come in for a face-to-face consultation the day before.

What’s more, I would have seen a physio.

The surgeon ended our conversation by asking me to contact my GP and get a district nurse to check the dressing. So that’s what I did.

My GP was less than impressed. The hospital hadn’t given them any information about the surgery.

I pointed out that I had got a friend to deliver a letter to my GP that I was given on discharge from hospital. The GP told me, however, that this had turned out simply to be a list of medications.

I then tried to explain as best I could what the operation was that I had had. My GP listened in growing dismay.

I have to say that at this point the Community Health Team suddenly whirred into action. A district nurse came and removed the dressing on my leg which, by that time, had been in place for some time. The nurse assured me the wound was looking good.

Then another positive thing happened. An occupational therapist from the Nuffield Orthopaedic Centre phoned to ask if there was anything I needed. I asked if they could refer me to a physio at my local hospital, the Great Western in Swindon. Such a reference would not only involve crossing the boundary between one Area Health Authority and another, but also between the private health sector and the NHS. I wasn’t at all sure that anything would actually happen!

Despite my misgivings, though, lo and behold, a physio from the Community Health Team duly contacted me.

Wonderful!

At the time of writing, they have already been to visit me twice. This is so much better than after my operation last summer, when I was left to rehabilitate myself. The physio has given me exercises to do and organised for me to receive a perching stool to go in the kitchen, and for my sofa to be raised to a better level. It is so much easier to get in and out of the sofa now that I think I will keep it at this level.

The physio is due to come back next week and I hope he will be able to help me with other practical living and mobility issues.

Surgery 2021 – #4 of 6: Relief Supplies

I have been recounting my experiences in the Manor Hospital in Oxford whilst I waited for and then recovered from surgery. I suppose at this point I should explain what the new surgical procedure involved.

Well, they took out my existing hip replacement and the broken bit of my femur. They then gave me a new hip and put metal in right down to the end of my femur. I am metal now from hip to knee and have a very impressive scar to prove it.

One of the benefits of this approach was that, as they had taken away the broken femur, there was no longer any fracture to heal. One of the surgeons opined that, if they’d left the femur in place, it never would have healed. This was at least in part because my rheumatoid arthritis interferes with the healing process. Medical opinion was that this operation would give me more stability, which it has. I can stand on my two feet without holding onto anything and feel pretty secure, which I didn’t after the first operation. Even better, now, some ten or more weeks or so on from the operation, my leg is nothing like as painful as it was after the first procedure. The pain never did go away after that one.

Mind you, my leg was pretty painful in the weeks following this operation and, while I was in hospital, there were the usual issues over pain control. All was well at first. In the days immediately following surgery, the doctors ensured that I had sufficient pain relief for me to cope. After a few days, though, the nurses started commenting that I had very few of my morphine sulphate tablets lefts. These are the ones I use to control acute “breakthrough” pain. I asked what would happen if I ran out. I was told, “Well, our pharmacy may have them.”

This was vague and not very encouraging.

I discovered when they gave me my medication to bring home that they had simply been relying on the supply that I had brought in when I was first admitted. So much for private healthcare. In the NHS Great Western Hospital in Swindon, when they saw any of my medicines running low, they always made sure that they ordered more from the pharmacy. Fortunately, I was discharged from the Manor Hospital before my supply of medication ran out and I was able to get more from my GP.

It was unnerving, though, and raises questions for me about the contract the NHS has with the Nuffield Orthopaedic Centre.

Surgery 2021 – #3 of 6: Private versus NHS

As related in my previous posts, following an unsuccessful operation last year, I was referred to the private Manor Hospital in Oxford for an NHS operation to replace my hip and repair my broken leg.

I have to say that the nurses and health care assistants at the Manor Hospital were very kind. One took a long time helping me connect to the hospital Wi-Fi. When I discovered I had accidentally only brought the charging cable and not the plug for my phone, one of the night staff kindly lent me a charger for the night.

The only real difference I noticed at first between NHS and private care was that I had a room of my own and everyone knocked and waited for me to say “Come in!” before entering. I also think the curtains might have been made of slightly nicer material.

Then again, I didn’t find the food particularly special. At the Great Western Hospital (GWH) in Swindon, they have a different menu for each day of the week. It’s true that if you are in for more than seven days, the same choices come round again but, in the meantime, each day is different. In contrast, the menu at the Manor Hospital was exactly the same every day except for Sunday, when there were fewer options but one of them was a roast.

Oh yes, I almost forgot: the tea at the Manor Hospital came in a pot, and the milk arrived in a proper jug. All very civilised.

At GWH, I was cared for by nursing staff and they were always very good about anticipating my needs. As I can’t see, they would explain what was on my plate and where the different items (meat, potato, veg etc) were located. They would also offer to cut up my food for me, which was very helpful. The food at the Manor was served by catering staff and, until some of them eventually got to know me, I had to explain to them each time what I needed.

When I first arrived at the Manor, I was told that I would be going down to theatre early the next day, but a problem soon arose. Due to having had a large blood transfusion some years ago, I had antibodies in my blood and, before they could operate, they had to be sure to match the blood I might need very carefully. This meant sending test results to the John Radcliffe, a nearby teaching hospital, and waiting for them to send over the right blood products.

Whilst I waited to go down to theatre, I started to explore my table. I found a remote control. It felt very similar to the remote I have for my Digibox TV receiver at home. I tried pressing buttons. Lo and behold, a TV came on! Even better, it was Freeview, like I’m used to, so the channels were where I expected them to be. Even more wonderful, the audio-description was switched on!

This TV became my lifeline. After surgery I was in a lot of pain and discomfort. I had no visitors so there were an awful lot of hours to while away. I put the TV on a station which ran back-to-back detective shows and watched it from mid-afternoon till 2 o’clock in the morning.

I wouldn’t have been able to do this if I’d been on an NHS ward. Another benefit of being in a room of my own!

Surgery 2021 – #2 of 6: Sent to Oxford

As I explained in my previous blog, I was told in January that the operation to repair my broken leg last summer had failed and I needed urgent surgery.

I was informed that two consultants at the Great Western Hospital (GWH) in Swindon had had to clear their diaries for what could be an all-day operation. They would remove my original hip replacement, install a new one and put a piece of metal down past the fracture in my femur (upper leg bone).

Three days later, one of the consultants phoned me. There was a problem. Because I had arthritis as a child, I have narrow bones, and they didn’t have a prosthesis small enough to fit me. They had decided that better results would be achieved by a different operation and were referring me to the Nuffield Orthopaedic Centre in Oxford.

This is a centre of excellence but I viewed the change in plans with some trepidation. I would have preferred to be in my local hospital, not one an hour’s drive away. However, if it was for the best, then so be it.

I asked about transport but none was available. So, it was going to have to be a DIY job.

It turned out I was actually being sent to the Manor Hospital, a private concern run by Nuffield Health which, nevertheless, does take on some NHS work. While they were happy to accept the ECG and other test results provided by the Great Western Hospital, they insisted on doing their own Covid test before they would admit me. This meant that I had to pay a driver to take my assistant Mary and me to Oxford the week before the proposed admission for a test that had already been carried out by GWH.

Oh well, who am I to question the strange ways of hospital bureaucracy?

Thankfully, the Covid showed that I was free of infection so my niece kindly drove Mary and me to Oxford the day I was admitted. Once again, because of Covid regulations, Mary couldn’t stay with me and, of course, I couldn’t have visitors so, once she had handed me over at reception, I was all on my own.

Surgery 2021 – #1 of 6: Breaking Bad

Hello, I’m back!

When I last saw you, I was limping around in great discomfort and with a growing sense of frustration. I had had an operation to repair my broken leg but, after months of what was supposed to be recuperation, I had started to feel that not only was I not making progress but I was actually going backwards!

I thought this was due to a lack of correct exercise and went to my appointment at the Trauma and Fracture Clinic in January all set to request some physiotherapy.

Accompanied by Mary, my friend and PA, I arrived at the Great Western Hospital in Swindon at 11 am and had an X-ray to see how well the bone in my leg was healing. When I got to see the doctor afterwards, though, there was a nasty surprise. Not only had the fracture in my femur still not healed, it had become displaced. In layman’s terms, it had got worse. The doctor told me that I urgently needed surgery.

From this point, my planned ten minute appointment turned into an all-day affair whilst they did pre-surgery checks for an operation the following week.

Because of Covid regulations, Mary was not allowed to stay with me. I couldn’t get a mobile signal so I had no way of keeping her informed of my progress nor of finding out how she was faring. I waited around on a ward and was given various tests, with long gaps in between. I wasn’t allowed to eat although at some point I was given a glass of water. Eventually, at around 5.30 pm, I saw a doctor, who said that I needed a chest X-ray.

I was reunited with Mary at this point and we made our way down to Radiography for the second time that day. Once there, we waited and waited.

After some time, we were told that the doctor hadn’t made the X-ray request in the correct manner. They would have to find another doctor to complete the paperwork properly.

Once again, we waited and we waited.

Eventually we were told that the doctor had decided that no X-ray was required and we could go home. By this time it was 7 pm. We were tired and hungry, although when I thought about the operation in prospect, I quickly began to lose my appetite.

The Gas Man Cometh (eventually)

Another year, another lockdown. Well, we knew it was coming. I didn’t expect to be in tier 4 but, never mind, it doesn’t affect me unduly.

I hope you enjoyed the holidays, whatever they brought you. My sister and brother-in-law found an imaginative way of bringing us together on Christmas Day. They erected a gazebo over their patio and decorated it with fairy lights. My brother made wooden foot plates to keep our feet warm by reducing direct contact with the cold ground and my sister lit a fire and tucked rugs around us. In this manner we sat in their garden, socially distanced from each other and eating hot turkey rolls followed by Christmas pudding. A good if chilly time was had by all.

Unfortunately, my brother, sister-in-law and I didn’t return to a warm house.

Do you know the Flanders and Swann song “The Gas Man Cometh”? I recommend it to you.

Just before Christmas, on 22 December, the gas man did come. He went to service my boiler, discovered it was unsafe and switched it off. He gave me the glad tidings that it was obsolete and so couldn’t be fixed and, by the way, the gas pipe it was connected to was the wrong diameter.

The engineer, Stefan, was very concerned about my situation and gave me two fan heaters out of his van. He then arranged for a surveyor to come straightaway and price the job for me. He even waited in his van until said surveyor, Kevin, had arrived.

Kevin was very helpful. We discussed how the pipe would make its way from the front to the back of my house. I vetoed any taking up of floorboards on the rational grounds that I don’t have any floorboards to take up. (I have laminate flooring under my carpet which wouldn’t be at all easy to lift.) In the end, we agreed that the pipe would come in at the front of the house, go round the top of the wall in my bedroom, through the spare room, and end up in the bathroom.

As I have rheumatoid arthritis I am, apparently, classed as a Category 1 customer and so the job was escalated to be done between Christmas and New Year instead of on the originally proposed date of the 5th of January.

I spent the next week wearing two layers and keeping all doors and windows shut to keep the heat in. I took to wearing fingerless gloves while I worked. I managed to get individual rooms quite warm with various forms of electric heater but still got cold moving around the house.

My brother attached a timer to the fan heater in my bedroom so at least I got up and went to bed in the warm. The bathroom was the place that didn’t heat up very well. As I don’t have an immersion heater, I also had to have an electric kettle upstairs to heat water for washing.

I don’t normally use my dishwasher very much but it really came into its own while the heating was off and I had no hot water supply. The same went for my washing machine. It could all have been much worse, and I felt I was luckier than the poor people who were flooded out over Christmas.

The gas company told me that they would install the pipes and new boiler on the 30th of December. I looked forward to this and counted down the days.

The new boiler and accompanying parts were duly delivered on the morning of the day in question. In the afternoon, an engineer appeared. He poked around a bit, declared that it was a two-man job and went away again.

He said that he would email his manager and “someone would be in touch.”

Fortunately, my family and friends persuaded me not to wait for this nebulous event. I rang the gas company the next day and, after an hour on the phone, I learnt that the non-completion of the work had never been logged onto their system. As far as they were concerned, the appointment had been kept and the job had been done. If I had waited for someone to call me, I would have still been waiting now. In the event, after I had patiently explained that the work had not even been started, I was told that the job had been re-scheduled for the 5th and 6th of January.

In other words, they would do the work on the dates when it would have been done if I had not been a so-called Category 1 customer.

On the 5th of January, an engineer named Michael arrived. I queried why there was only one of him. He told me he could do the job on his own.

What? Had I just waited a week unnecessarily? This is a question I am going to take up with the company concerned.

In fact, Michael did get help. Another engineer, James, had become free following the cancellation of his scheduled job, and so he and Michael beavered away for two days installing new gas pipes and a boiler in my house.

I am pleased to report that they worked very hard, were courteous, and took my visual impairment into account by not leaving equipment in my way and putting everything back where they had found it. They kept me informed of their progress and cleaned up brilliantly when they had finished.

By 6.30 in the evening on the 6th of January, I had heating and hot water once again.

Oh joy, oh rapture!

I had a celebratory bath and luxuriated in the warmth of a centrally heated house once again.

Putting people in boxes

We all tend to put people in boxes, even if we try hard not to: that person is English, that person is deaf, and so on. As we get to know them, we find that they don’t fit neatly into any one category and we gradually adapt to seeing them as they really are.

Large bureaucracies like the NHS find it harder to think outside the box.

I have to have regular blood tests. While I was not allowed to walk because of my broken leg, there was no question of me being able to attend the surgery, so arrangements were made for a nurse to come to me.

Now I am on my feet it is a different story. The rule is unbreakable: if you can step outside your front door, you are not housebound and you do not qualify for a home visit. I tried explaining to the community nursing team that whilst that was true, it was one thing to ask a taxi driver to guide me because I am blind and quite another to ask them to assist a visually-impaired person who is using a Zimmer frame.

The answer was still no.

In the end, I had to ask a friend to accompany me to the surgery.

In example number two, I was trying to book hospital transport. For my first X-ray I was allowed transport because I couldn’t walk. There was no ambiguity there. However, when I rang back recently to arrange transport to hospital for my second X-ray, there was a definite reluctance on the other end of the phone.

“Do you go out at all?”

“I go to church.”

“How do you get there?”

“A friend gives me a lift but then she is going there anyway. It’s quite a different thing to ask her to take me to the hospital.”

“Can’t anyone go with you?”

I was asked to see if I could find someone to accompany me. I was told, that, if this really wasn’t possible, I could come back to them but there was no guarantee that they could help me.

In the end, I did manage to find a friend who could take me, and I’m very grateful for their help.

Now, it probably sounds as though I’m complaining but, actually, I’m not. I do understand that the NHS has limited resources and has to draw up rules to ensure that those resources are used for the benefit of those who need them most. I also understand that if they started making exceptions it would end in over-stretched resources and headaches all round for those in charge.

There is an issue here, though, about what happens when you don’t slot into a convenient category or meet a predefined bureaucratic criterion – when, in other words, you don’t quite “fit into the box.”

When I mentioned this to the nurse as she took my blood, she said it was a problem many of her patients had. I’m sure it is. There are lots of us out here with complex needs.

I hope I’m getting across that I’m not indulging in special pleading for the visually-impaired. We’re not the only ones affected by these issues. I do want to make a point about visual impairment, though, when it’s combined with another physical disability. I don’t think people always realise how much this complicates life.

Even when I am in my own home, where – at least in theory! – I know where I’m going, I still bash into the walls when I have to use a Zimmer frame because I can’t accurately judge how big the frame is. I don’t always walk smoothly through gaps in the furniture for the same reason. I’m not a brilliant Zimmer frame driver and, when I do go out, I have to get my friends to grab hold of the frame to steer me, rather in the manner they used to do when helping me with supermarket trolleys back when I still went out to a supermarket!

Imagine me trying to explain to a taxi driver, for whom English may not be their first language, exactly what help I need! They are mostly very helpful, but I think that would be asking a bit too much.

I don’t know what the answer is and, as with so much in life, there probably isn’t a perfect solution. I do wonder, though, whether a little education for health service professionals about the complications thrown up by having more than one disability might not be a very good idea.

Autumn

I have just been walking round my garden with my trusty Zimmer frame, getting a little exercise and soaking up the sunshine.

I love these autumn days when the sun is bright and there is even still a little warmth to be had but there is that wonderful sharp tang in the air.

I associate this time of year with fresh beginnings: starting a new school year, starting college, starting my first job, and now, of course, recommencing activities that I had to suspend for the summer.

It’s great!

There are two aspects of this time of year that I don’t like, though.

The first is the drawing in of the days. I hate putting on the lights and drawing the curtains at six o’clock in the evening. Interestingly, some of my friends who can’t see at all feel the same so it isn’t just to do with actually seeing the approaching darkness outside. There must be something more fundamental to do with feeling the days are growing shorter and we are living more enclosed lives. This may take on an even deeper significance now that we are living with coronavirus and the spectre of local lockdowns.

Once the winter has truly arrived, I can start to enjoy being cosy indoors, but right now I am still lamenting the end of summer.

The other thing I don’t like about this time of year is the coming of the cold. I have poor circulation and arthritis so the chilly air really doesn’t agree with me. Some days I can actually feel myself slowing down. More problematic still is having cold hands. Cold fingers lose their sensitivity. I find it more difficult to feel things, and particularly to read braille. It doesn’t help that my office faces north and can be quite chilly, even on otherwise warmish days.

And the truth is, I have a little of Scrooge in me.

We have had some relatively warm Octobers in recent years and I have been able to put off starting the central heating until we were nearly in November. This has become something of a challenge to myself. How long can I hold out?

Meanwhile, I put on my fingerless gloves in the office. Sometimes I find I just have to put the electric fire on but I let the room warm up and then switch it off again. I tell myself to put more layers on. Eventually, of course, the elements will win.

Just between you and me (please keep it a secret!), I have already put the central heating on a couple of times this year. It was just to warm the house for a short while in the mornings and evenings you understand. Not cheating at all…

I probably won’t win the “Can you keep the central heating off until November?” challenge this year. The forecast isn’t great but I’m going to hang on for as long as I can!

Devon boats, trains and cars (not to mention cathedrals and Jurassic cream teas!)

I promised last week to tell you some more about the holiday my friend Mary and I took in Exmouth recently.

The day after our abortive ice-cream sundae hunt, we took our second boat trip of the week. This voyage was along the so-called Jurassic Coast and included a Devon cream tea, which was absolutely delicious. Whereas on Sunday’s river cruise the water had done no more than lap gently at the side of the boat, this time there was a definite swell and there was no mistaking that we were out to sea. The boat bobbed up and down and the waves slapped vigorously at the sides of the vessel. This was all very satisfactory from my point of view. I don’t want a calm mill pond, I want a sea that is alive and kicking so that I can get the full experience – and on this occasion I certainly did!

Another fun if slightly more sedate trip was riding on the land-train around the town. Again, we got a commentary as we went along and this helped us get a good idea of where everything was.

Our explorations of south Devon by land and sea were extended still further when, half-way through our holiday, a college friend of mine who lives in the area came over and took us out in her car for a pub lunch and a drive along the coast.

On Friday we decided to venture into Exeter. This meant travelling on the train. We hadn’t booked assistance in advance but the station staff at Exmouth and Exeter Central were wonderful. They put wheelchair ramps in place and made sure we got safely on and off the train.

I have been to Exeter Cathedral before but it repays visiting more than once. It has a lot of history attached to it and is a magnificent building. One of the volunteers on duty offered us a guided tour, which we were pleased to accept. She was extremely knowledgeable and helpful. She knew the best route for the wheelchair, found a braille guide and showed us a tactile floor plan of the cathedral. This was really useful. I know what the layout is likely to be up to a point but when you can’t see it can be quite hard to hold the image of such a large building in your mind’s eye and work out which bits link up and where. They also had an architect’s model of the outside of the building which gave me a different perspective. Again, drawing a picture in of such a large structure just in your head can be very difficult.

Late summer was already becoming autumn and the weather started to turn colder and wetter towards the end of our stay. We had chosen a good week for our holiday but now it was time to go home.

We came back refreshed and feeling we had been very fortunate.

So now it’s back to work. No peace for the wicked, as my P.E. teacher used to say!