11th January 2022
A quick update now Damian has had his operation. Last week was pretty tense: I had hoped we would get some confirmation of the surgery and some instructions on what to take in, if we should isolate, if he needed Covid tests etc.. I phoned the hospital so many times during the week that I ended up on first name terms with the secretary, but it was 5.40 on Friday afternoon when we finally got the call.
I took him in to the ward at 10am yesterday. No visiting is allowed but they let me stay for a few hours which was a blessing as it meant I could talk to the staff on the ward, the doctors and the surgeon's assistant. We went through the consent forms which were quite complex. The surgeon was keen to save as much bone as possible but until he got in there he wouldn't know exactly what the surgery would involve. Damian had his lunch and I left him just after two o'clock. He was very positive and upbeat.
He slept on and off (as did I) and was a bit more apprehensive, but still positive this morning. He was first on the surgeon's list and, as far as I can tell, he went in to theatre at about 10.00. I had assumed he would have a general anaesthetic, but instead he had an epidural so could hear all sorts of drilling, chiseling and sawing but could feel nothing. He was back on the ward at about 2.30 and rang me straight away. He was remarkably perky and seemed fully alert. I dare say there will be some pain when the anaesthetic wears off. I feel fairly sure that the physios will get him up and about tomorrow.
I don't know any details as I haven't yet spoken to any staff at the hospital but I will try to get through to the ward tomorrow.
Now the surgery is over I feel quite a bit of relief, but also some trepidation until I see him back at home and able to manage safely. It's certainly great to have the surgery behind us before we start to try and get back to where we were before last August.
More when I can.
When I spoke to Damian last night he was much less perky - the anaesthetic had started to wear off and he was in a bit of pain. Codeine had made him vomit, but he had been ok with paracetamol. I'm sure they'll sort out his pain management. At least I think I'm sure ...
I was wrong about them getting him up and active. A physio from the ward phoned me earlier today to say he wouldn't be able to weight-bear for about six weeks. I suppose I should have realised that would be the case as it is his "good" leg but it has been a bit of a shock to be honest. I've got a meeting with them tomorrow morning at 10 o'clock so will hopefully find out more then. I have no idea how they expect him/us to manage if he can't walk at all.
Hopefully I'll have a more positive update tomorrow.
I went in this morning to see Damian and to talk to the physio. He seemed a bit brighter than he had been yesterday which was good. He’s been moved into a bay now rather than the room he was in before but he seemed quite contented.
The physio came and tried to get Damian to transfer from the bed onto a chair using a banana board. He did manage it but it was difficult and he needed a lot of help. I can’t see how he could manage from an unadjustable bed onto a chair with an arm. It was quite difficult to watch him struggle. I spoke candidly to the physio about our experience in August and September and she agreed that Damian should be transferred to a rehab hospital until he is safer and more mobile. We are both desperate to have him home but I think this is the right thing to do. She promised to ring when it was sorted out.
I suppose this is progress - but it still feels like an uphill struggle.
On Friday I managed to get through to the ward to ask how Damian was getting on. I was told that he was comfortable and that the move to the rehab hospital was being arranged. After our experience last summer I am very nervous about the move but the physio I spoke to assured me he would get plenty of attention and help. I asked if I could visit on Saturday and they said as long as I took a lateral flow test it would be fine.
When I turned up I had to persuade the weekend staff that I had been given permission to visit. I was allowed in and spent an hour or so with Damian. He really is in a bit of a mess. Just moving about in the bed is a huge effort. I just can't see how he can spend six weeks like this: he certainly isn't in a fit state to be at home but I find it increasingly difficult to trust the NHS to look after him properly. I was disappointed that by 1pm he hadn't been washed or had his bedclothes changed. I had to ask them to do it while I was there. Damian remains cheerful and positive in spite of it all.
One of the nurses told me they were going to move him to the rehab unit in the afternoon. As always it was a bit later than promised but he was installed at Rowley Regis Hospital by about 8.30 last night. I'm a bit surprised no one from the hospital has actually spoken to me yet - the only reason I knew he was on his way was because I checked the FindMy app on my phone. They've told Damian there will be no visiting at all there. This makes me very concerned. His aphasia makes it difficult for him to get his points across so I feel I have to advocate for him. His communication problems are part of the reason his last hospital stay was such a disaster. I will ring the ward tomorrow and try to appeal to their sense of decency. Hopefully I'll get to speak to someone who has a bit of common sense but if I need to be a bloody nuisance there I will.
I have spoken to him this morning and he seems ok but, like me, he didn't get much sleep last night. I imagine that today will be very quiet for him so hopefully he'll get some rest before what I hope will be some serious rehab tomorrow.
I'll post again when there are some developments to report.
Damian has settled in to Rowley Regis and seems ok. He has had some physio but as he can't weight-bear it is mostly about transferring from bed to chair and back using a banana board. I have had mixed responses to my requests for a visit. As I expected I am usually fobbed off with "hospital policy" but after a phone chat with one of the physios I had a call offering me a meeting with the rehab team on Thursday. It was great to see Damian and talk to the therapists. They said they are hoping he will be able to come home this coming week and someone is coming to see the flat tomorrow morning. We will need a special chair for him to sit in and possibly a hospital bed so there will have to be some changes at home. I don't know yet what this will mean for me - I will certainly have to be at home for a few days to make sure he is safe. It all feels out of my hands so I'll just have to wait and see.
One of the things I'm worried about is the care package. The therapists kept talking about changing it again. That would mean going back to the same team he had before which I dread. They often came to get him up at 11am and to put him to bed at 6pm. It's no good at all and we really don't want it. We have a wonderful and reliable carer called Pelegie and it was a struggle to get her back last time so I will do whatever it takes to leave things as they are. Again I find myself up against "policy".
This morning Damian called and said he needed some clean clothes so I took them in. The security guard on the door started on about me not having an appointment so I would have to use a phone on his desk to check with the ward. I am sick of being beholden to these stupid rules so I told him it wasn't my policy to use public telephones and sailed past him. When I got to the ward they were absolutely lovely. The nurse grabbed my hand and dragged me in to see Damian for a couple of minutes. They're not all jobsworths.
Hopefully next time I post Damian will be home.
A quick update to say that Damian was discharged from the rehab hospital yesterday. His plaster cast and the staples in his knee were removed and replaced with a brace and he came home in the afternoon.
We are both delighted that he is home at last and I do think that the hospital have treated him well this time. He is on good form, but the mobility issues are very significant. He can transfer from bed to wheelchair to commode to an armchair but every move is a bit of a palaver. Robbie is coming later today so hopefully he will have some ideas how we can manage things more easily.
Pelegie came first thing this morning and we were both delighted to see her. It was a bit of a learning curve for her too as the routine has to be so different from before but she managed perfectly.
I will stay with him for a while. School are very understanding and allowing me to work from home for the moment. Hopefully in a week or so things will have improved to a point when I can go back to work properly.
Damian has been home since last Wednesday and in himself is well. Certainly he is delighted to be out of hospital but being at home is not without its difficulties. I have a tendency to be quite naive I think. It comes from trying to be positive and mixing up what I want with what is realistic. The truth is that he can’t be on his own for more than an hour or so because he needs assistance with pretty much everything. He has an armchair with arms that can lower to enable him to transfer into his wheelchair but he can’t lower it himself and anyway he can’t propel the wheelchair without help because of his stroke affected arm. I had hoped that there would be a gradual improvement and that he would be able to manage more each day, but until he can weigh-bear fully that’s not going to happen.
This means that I am unable to go to work. I am doing what I can from home - online lessons again like we did in the lockdowns - but it’s not the same and I am missing being at school enormously. I know that I am incredibly lucky that School is being so accommodating but it doesn’t make me feel any happier about everything I’m missing.
Anyway - Damian’s knee seems to be doing well. Robbie has given him some exercises and his speech therapy starts again today. He’s also been involved with quite a few Silverlining Zoom calls and several friends have visited so he is kept busy most of the time.
It’s three weeks since the surgery, so another three weeks before we will see what the results really are. At that point, hopefully, we will be back to where we were last August. Not a great place in itself, as he needs the toes on his stroke-affected leg to be operated on as they are very clawed and make walking difficult. Hopefully we’ll be able to concentrate on that soon.
Last Saturday we had an appointment at the Royal Orthopaedic Hospital for the Botox clinic. Getting there was not straightforward as we can’t yet use our own car, so I booked a TOA taxi. There was a problem with the carer and she wasn’t able to come so the day didn’t get off to the best start. The driver was fine and got us there safely, and assured me that all TOA Taxis could take wheelchairs so I could use the app to book our return journey. When we got in, there was no record of the appointment - they were expecting him on March 5th, not February. I know we booked February - the appointments are supposed to be every 4 months and his last one was on October 2nd. I put it in my diary when we made the appointment last time.
As luck would have it Mr Mikalev, the consultant who operated on Damian’s arm last year, was in the office at the time and came out to see us. He said he would talk to us and examine Damian’s arm and leg. He could see that his toes were very clawed but was fairly pleased with his arm, although he may well need to do some more work in the future. He was happy to give Damian the botox but suggested we might get more benefit from leaving it until March as Damian is not able to walk right now anyway, so he’d get an extra month of benefit in late spring.
I was relieved that the morning hadn’t been a complete waste of effort and I ordered a taxi home. It took nearly half an hour to turn up and when it arrived the driver pointed at Damian and asked me “is he in a wheelchair?” Apparently he was “exempt” from having to deal with wheelchair users. He then told me how he had wasted his journey to pick us up. To add insult to injury TOA charged me £3 for cancelling the ride.
Anyway the rest of the week came and went. My sanity was saved by my online teaching. I cannot begin to tell you how pleased I am to see my pupils and feel as though I am actually doing something vaguely useful. I am very fortunate that School are so understanding.
Yesterday we had a visit from a Sandwell physio. She was extremely helpful and said she would chase up some other issues we were waiting for. She explained that he wouldn’t be able to weight-bear until we’d seen the surgeon again, but she will chase up the appointment. She is also going to arrange someone to look at our bathroom to see if it can be modified so Damian will be able to shower safely, and try to get his wheelchair changed.
A couple of hours after she left we had a call from an OT who is coming to look at the bathroom today. That’s what I call service.
Damian seems really well in himself. He’s seen Robbie as usual for his physio, Ruth for his speech therapy, the Silverliners a few times, BCU for their conversation and book groups and friends have called in to see us too. It is still very frustrating and limiting though and he is as keen to get back to being able to get about himself as I am to get back to work. Fingers crossed things will start to change soon.
(This might be quite long so please feel free to scroll past it. I know it's dull but writing these updates helps me get my head around things)
Quite a few things have happened this week so here goes with another update. Since my last diatribe things were fairly uneventful for a while. Damian did his physio exercises which kept his movement going but there was no weight bearing allowed so we were both pretty stuck. Damian didn't leave the flat at all until this week when we finally had the appointment with the consultant on Thursday. We both had high hopes: Damian's priority was being rid of the large and clumsy brace he has had to wear 24 hours a day, and mine was him becoming safely mobile again so I could get back to work. We needed a taxi because there's no way Damian can get into the car safely. I learned from our experience last time to book it over the phone and explain that we needed a wheelchair compatible vehicle and driver.
Damian had his X-rays and we got to speak to the consultant and his registrar. The news was good and bad. To be honest, at the time, it felt largely bad. The most important result was that the healing is happening as the surgeon hoped. Everything is in line and seems to be fine. His range of movement is excellent, thanks to the regular physio. I saw the X-ray and there is a huge amount of metal work in there. A big triangular wedge and a couple of dozen bolts are holding everything together. What wasn't so welcome was that he still isn't allowed to weight bear for at least another three weeks. I think they are being extra cautious because of Damian's other issues. His stroke affected leg can't compensate fully for his healing leg, and his single working arm means a crutch or walking frame is not suitable. He is allowed to stand with support, and he can take a few steps, but only with someone by his side. The brace cannot be discarded either. He has to wear it whenever he is transferring or exercising, but at least he can take it off in bed.
Robbie came once we were back at home. We were both a bit crestfallen but he saw things much more positively and helped Damian stand straight for the first time in seven weeks, and take a few very tentative steps. We felt a bit more positive after he left, but I still have major concerns about the next few weeks.
Looking back none of this should have been a surprise but I have been hoping, naively, that I would be free to get my life back. Apart from selfishly feeling sorry for myself being stuck here I worried about letting down School yet again. This can't go on and I need to move on but there's no way Damian can be left for more than a couple of hours. If he fell it could be catastrophic and after everything we've been through I can't let that happen.
I had a (another) very disturbed sleep and spoke to Neil the next morning about what to do about School. He suggested I went in a couple of mornings a week for now. That is doable I think. Damian has his carer at 6.30 and another at 11.30. He will need to stay in his chair in the interim but he should manage for a couple of days a week. It will allow me to take a couple of my ensembles and to teach the younger pupils at school who can't have Zoom lessons. The thought of it made sense and I emailed School. It's so difficult to keep going to them cap-in-hand, especially when they have been so understanding for so long, but I got a reply in the afternoon to say they were happy for me to try that. It will be difficult but I cannot wait to get back to my room at School and do something "normal" again.
Yesterday afternoon Damian had an appointment for a blood test at the Doctor's surgery. I had the bright idea of walking up there - it's only about half a mile and he has a new wheelchair that I though we could take for a spin. Not my finest brainwave. Halfway there, an uneven curb caused one of the tyres to come off. Getting it back on was a right palaver but somehow I managed. Once we finally got to the surgery I asked if we could have a face to face appointment with the doctor who knows us best. The next available one is April 4th. This is ridiculous. We can pretend we have an emergency and see a doctor who doesn't know either of us from Adam, but we have to wait weeks to see "our" doctor. I'm going to write to her and see if she can do something sooner. Going through the dear ladies on the reception never gets you very far.
Today we had the re-scheduled Botox clinic. Again TOA got the benefit of our grudging custom but, to be fair, it all worked well this time. About two years ago Damian had an ingrowing toenail on the big toe of his right (stroke affected) leg. His chiropodist has been dealing with it regularly but it has flared up several times, especially when the spasticity causes his toes to tighten and curl. Because of what's happened recently we are well over-due a visit to the chiropodist so it is not in a good state. We saw a couple of specialists at the clinic, one was the consultant who operated on his arm last year, and the other was from NPP (the company Robbie works for). They were very unhappy with the state of his toe. It has become infected and they were concerned it could have serious consequences if it wasn't dealt with quickly so they sent us to A&E. The Botox has been postponed again until it's sorted.
We sat in A&E for some hours. I could write a book about hospital waiting rooms. It would be very boring but very long. The staff constantly avoid eye contact with everyone and shuffle about holding bits of paper. The only time I saw any of them walking with any sense of purpose was when they went off for breaks. They'd return fifteen minutes or so later, back to shuffling again, clutching enormous Costa cups. The waiting area was next to a staff area separated by one-way glass. It didn't stop us hearing lively chat and gales of laughter while we waited and waited.
Eventually a smiling, friendly nurse came to get us. He had a very quick look at the toe, gave Damian a week's course of antibiotics and suggested we get referred to a podiatrist ASAP. I'm not hanging about any more so in the taxi on the way home I booked an appointment at a clinic near the flat a week on Monday.
So on it goes. We are trying to be positive - Damian tends to be better at that than me. I am really looking forward to Tuesday and spending a couple of hours at School and I dare say Damian is looking forward to a couple of hours of peace and quiet.
More when anything important happens.
Things are starting to improve at last. Once the infection in Damian's toe was sorted out we went to the podiatrist who sorted out the offending nail. She seemed to know what she was doing, and we've had to go back a few times for them to check it so I hope we've finally got that issue sorted out properly now.
I was delighted to be back at school - just a couple of mornings for the first two weeks, then full time for a fortnight. It was a bit nerve wracking being away but I loved being back at work with other things to occupy me.
Yesterday we went to see the consultant who had operated on his knee in January. It was a very positive visit. There were new X-rays taken and everything is healing well and the bones are knitting together correctly. At last he is now able to weight bear, and can start to walk again. He is delighted to be rid of the brace but he is supposed to wear it while exercising for a couple of weeks yet. It's early days but I can now start to see that things will get better.
We have managed to get a face-to-face appointment with our doctor for tomorrow so it will be good to go over everything with her. There are referrals I want to chase up and also go through Damian's drugs properly as I have a feeling that some of his drugs are making his fatigue worse.
Today we went out for lunch. We managed to park near the restaurant but I think going without the brace was a mistake to be honest. He did manage but the walking was very slow and extremely hard work. He was exhausted when we got home and needed a couple of hours sleep.
The best thing about today was phoning Medequip and asking them to come and collect most of the equipment and aids we've had since last September. I'm looking forward to a couple of weeks at home when we can start to get out and about again, but I suspect the brace and wheelchair will still be needed for a while yet.
It’s five years today since this whole saga started. When I took that first call from the paramedics I can remember thinking “this will all be fine - terrible things don’t happen to us - he will get better and be back to normal in no time.”
As time has passed I have realised that I was wrong. It is a terrible thing and has had a long lasting and disastrous effect on both of us. It has been a very difficult lesson to learn. I have discovered many other things too: The importance of real friends, loving family and generous colleagues - true, steadfast people who are there no matter what. We seem to have lost some I would have classed as friends along the way which causes me sadness, but it makes our gratitude for the ones who have stood by us all the stronger.
The last two or three weeks have seen some really encouraging progress. The healing of the toe took longer than we hoped but Damian was finally discharged by the podiatrist last week. This is very fortunate timing as we are off to see Mr Fenton next week. He will hopefully be able to stop the clawing of his toes and make his walking better.
Almost all of the equipment from Medequip was collected last week too. Getting rid of frames, commodes, risers, cushions and stools was extremely therapeutic.
He managed a family barbecue and had a great time. He was really energetic, chatty and perky and stayed that way until about 4pm. We had a concert at school last Friday and I managed to persuade Damian to come. He was picked up by a friend at 2.30, the concert was at 5.20 and we went for a drink and something to eat with some colleagues afterwards. It was 9pm by the time we got home and it was amazing to see him out and about, enjoying himself and socialising.
His undiagnosed fractured leg has set us back massively not only with his mobility but also with his confidence and his fatigue. At last things are starting to get back to where they were a year ago. It’s a start. We’re never going to get back to our old normal, but maybe the new normal won’t be so bad after all.
It's been a while since I've updated news on Damian's progress, and as today is his birthday, our wedding anniversary and a year since his seizure which caused all of our recent difficulties, I thought now was a good time.
Healthwise Damian is doing well. We are still waiting for some surgery on his toes which I hope will improve his mobility and I also want him to have some more work done on his arm. It is still very tight and there hasn't been any improvement in function.
The big news really, is that Robbie will be leaving us in October. He has been coming to see Damian two or three times a week for well over five years and has made an enormous difference to our lives. We are both very sad to be saying good bye to such an influential person but he is a young man and wants to go off and see the world. He finally has the opportunity and we are thrilled for him. Damian has decided that he doesn't want to find a new physio. It would certainly be impossible to replace Robbie and we have agreed that by now, Damian should have the knowledge to keep up his work and exercises. If he can be motivated to do that for himself it will be fine. If not we will have to think again.
We've had some good experiences so far this summer. In July we went to Glyndebourne to see La Boheme. We had a wonderful time and loved every minute. We took Damian's wheelchair which made it less tiring for him (if not for me...) and although the weather was wonderful it wasn't quite as hot as last year so we were much more comfortable.
The opera itself was wonderful and we had a beautiful picnic with Louise (one of Damian's speech therapists from Moor Green), her husband Anthony and her sister and niece. They were great company and we laughed a lot.
The other really notable experience so far this summer was our trip to London last Friday. The journey there was fine: we had requested assistance from the station and it was excellent. We had a lovely lunch at Brasserie Zedel, bumped into an old friend from sixth form days and made it to the hotel which was thankfully air conditioned. We were both full and tired so just relaxed in our room and had an early night. On Saturday we went to the Abba Voyage show. I have never seen anything like it in my life. It was wonderful and we were both buzzing for hours after. Again we were looked after superbly by the staff at the Abba Arena. Sadly the same can't be said of the very frustrating (and eye waveringly expensive) taxi trip back to the hotel but nothing could spoil our mood. Our journey home, in the end, went well. Again the station assistance came up trumps and, having cancelled our original train home, we managed to find an earlier train which was almost empty.
I learned a lot from both trips. Firstly we took the wheelchair which for me is a bloody nuisance, but it makes it much easier and less tiring for Damian. I also learned that we really are limited to one event a day. The journey and lunch on Friday, and the concert on Saturday meant on both nights we were fast asleep by about 8pm.
The summer has seen a few frustrations too. We've had lots of difficulties with the care company. Monday-Friday is always fine because Pelagie comes and is wonderful. It has been a (generally un-)lucky dip at weekends. In the space of five weeks I've had to phone up six times, and on five of those occasions we never did get a care call. This week I've had a face-to-face meeting with the care manager and have been assured that things will improve. Hmm. We'll see.
As well as our two trips away we've seen friends and family which has been wonderful and we still have our nephew's wedding and the Tilling Gathering to look forward to. I'm also really looking forward to getting back to work and in spite of the misery of the news these days I am optimistic that the year ahead will be much better than the year we've had.
Enjoy the rest of the summer. I'll post again when there's any news.