03/12/2023 - 'Getting a second opinion' by Alice
The date of 27th November marks 16 years since David started working at UHS and the first day we ever met. We both remember it well as I had to stay late at work to bring a patient up to recovery from angio and poor David also had to stay late on his first ever day at work to help me look after them. We laughed about the fact we had the same surname and then I thought nothing more of that skinny bloke from the island.
16 years later, the 27th November was also the day we travelled to Oxford together to the John Radcliffe hospital for an expert second opinion. We were in no doubt of David’s diagnosis but as he had been referred to Oxford for consideration of a research trial, getting a second opinion was part and parcel of this appointment.
We both had the day off for the appointment and had decided to head up early to visit the Wasteless Wonderland – an eco-market in the main shopping centre. It had been featured on South Today and sounded right up our street and a nice way to spend the morning before the big appointment. A bit of festive shopping and eating was just what we needed before what could be a heavy afternoon. After finally finding it, we were dismayed to discover it was closed for the day and David insisted he was going to write a letter of complaint to the BBC for false advertising! We didn’t fancy any of the big shops so looked for lunch instead and ended up with two tasty tofu curries.
With the weather wet and not much else to do, we decided just to head to the hospital early to grab a coffee and cake and luckily, this was a sensible decision. Any patient coming for a visit to Southampton hospital will comment on our limited parking but the JR hospital was something else! We were getting lost and flustered, driving round and round, in and out of different car parks trying to scout a space. We finally ended up parking outside the maternity unit which unbeknown to us, was on the complete opposite side of the hospital to where we needed to be. Another frustrating and confusing walkabout ensued trying to find the neurosciences out-patients department. I have worked at Southampton hospital for nearly 25 years and despite the fact they keep adding bits on here and there, I know the site inside out and back to front. I could easily direct a patient to a ward or clinic but at the JR, I felt very lost and vulnerable and it really made me think about the lost patients I see wandering the corridors of my own hospital every day. We were up and down in the lifts and backwards and forwards down corridors until we finally found where we were looking for and successfully checked in.
There was a short, nervous wait with the other patients before we were called in to see Dr Turner, a professor of clinical neurology and neurosciences with a specialist interest in MND and research. We immediately warmed to him as his manner was open and honest. He asked what we wanted out of the appointment and did we have doubts over David’s diagnosis? As we didn’t, we moved onto discussing the potential causes, progression and prognosis. When David was diagnosed in July, his hands were unaffected however, his hand function has deteriorated over the last 4 months and his concern was that the speed of this deterioration would overtake his legs. However, the professor reassured David that the area where MND starts, is the area that takes the biggest and fastest hit. Just imagine for a moment what it must feel like to actually feel pleased you will lose your leg function first over your hand function. But we are faced with the situation where this was ultimately good news as it will still give David some independence, even in a chair. We asked again about walking time scales, in particular Rachel’s wedding and again, we were reassured that although mobility will be significantly declining over the next few months, and although it may be difficult, David should still be able to walk his daughter down the aisle. He did warn however, that standing up for the whole father-of-the-bride speech will most likely be very difficult by then and a stool to perch on should be sourced. MND is a very individual disease and affects people differently so most medical professionals have shied away from any real timescales or prognosis but the professor did tell us that David does not have the slow progression we once thought he had and in actual fact, is ‘average’. He was careful to stress to us the importance of ticking things off his bucket list sooner rather than later so this is now more time-critical than we had once thought. Hard and sobering news to hear but did very much put timescales into perspective. Some good news though, he did have a look at David's mouth and confirmed his tongue was still unaffected so for now, speaking, singing and swallowing are all safe from the ravages of this awful disease.
Speaking of averages, the professor told us David really does tick a lot of the ‘averages’ boxes – a fit man who has taken care of himself over the years, has maintained a normal weight and who has a good metabolism, meaning he hasn’t succumbed to a ‘middle-aged spread’. Nearly all causes of MND are unknown but he did reassure us it was nothing to do with ‘burning out’ your body through exercise and it is mostly just the way you are put together. So we will never really know the true reason David’s nervous system has packed up in such a catastrophic way and it will not do anyone any good to dwell on why it has happened as will most likely never find out.
We then came on to talk about potentially signing up for a research trial however, Oxford have nothing to offer right now until they open a study in the new year. This would involve monthly visits to Oxford for the first part of the study and the professor stressed that David’s time and quality of life was essential right now and that we had to weigh up carefully if a whole day taken for one appointment for a trial that might involve a placebo was worth it to us. After sitting in a horrendous traffic jam trying to get out of Oxford to get home, we both agreed that no, it wasn’t worth it. This does still leave us with a Southampton trial which has the convenience factor but does come with the risk of not only getting a placebo, but with no opportunity to get the actual study medication at a later stage. We discussed this and I think we are both resigned to the fact that this is the best option and if there is no benefit to David directly, someone has to get the placebo and all information gained will still help in the overall fight to get a cure for MND.
We were in the consulting room for over an hour and felt like the professor had given his time to us generously and been very honest with us. He asked if we were receiving psychological support and we do have input from our local groups and MNDA visitor. We also have wonderful families and friends checking in regularly. However, he did remind us that it is often the partner who struggles more mentally than the affected person so we need to keep this in mind moving forward. We do talk about it, laugh about it and cry about it together so we feel we do a good job of looking after each other. We talked about it on the way home and we both seemed to feel ok that evening but this seems to be the normal pattern for us now of feeling ok on the day but then really feeling the kick later. We met up to walk home from work on Tuesday and David’s legs felt weak and he struggled to walk with a stick on one side and me on the other. This made us both feel teary and sad and David couldn’t even make it to Sainsburys so headed home while I picked up the shopping and cooked dinner. A taste of what is to come when I have to do this every day, as David’s carer. David gets very tired now so called his mum to update her on the appointment and then headed up to bed around 7pm. Sometimes this can be a good thing as it means we get our own space and time to mull things over.
Despite these early bedtimes, we are still out and about plenty! Sunday we were out for a Christmas meal with our vegan runner friends and Thursday was a meal out with family.
Thursday also marked the day that David formally announced to everyone at work his retirement date which will be 14th December. I know that despite enjoying his job, the walk to and from is becoming just too hard and leaving just before Christmas seems the perfect time. He won't have to get up in the dark and cold and can stay at home, listening to records, reading books, watching films and sports and sorting his clutter out! I know he will miss everyone and I will miss knowing he's only one floor away but it's time to close that chapter of his life now.
David and I have always loved Christmas and he was excited for the start of advent and opening the first door of his 4, yes FOUR advent calendars. A traditionalist, he opted for one chocolate one (thanks to my mum for sending) and 3 picture ones, one of which he had last year but just pressed all the doors shut again! David and I always sleep with the radio on, 6music being our channel of choice, but we treated ourselves to Christmas radio. Both of us wake in the night sometimes so it was lovely to lay there listening to the festive tunes and thinking about this Christmas time together.
We had a really busy but festive weekend. Saturday morning we finally ticked off our NENDY parkrun. To those not in the know, NENDY is 'nearest event not done yet' and Whiteley had been the one to do for a few years. We'd not been enthused about it as most people report it's a bit boring compared to some of Hampshire's more scenic routes but we decided this week it had to be ticked off and as always, there were friends who wanted to come too. We woke to freezing conditions and as David and I always run in shorts, we were shivering on the start line. David found it to be a tough run, possibly due to the cold affecting his muscles. The course was fairly flat but he needed two of us to help him on the inclines and a few times, his feet scuffed on the ground. This concerns us both because as much as David wants to keep running, we can't risk a fall so we've been talking about when the right time will be to switch to parkwalking. That will be a sad day but we're not quite there yet.
After a post-parkrun coffee and home for a rest, we then bussed into town for a festive evening. We had dinner and both did a bit of Christmas shopping then headed to the big wheel.
To take the edge off, we chugged a cherry Gluhwein from the German bar and enjoyed the vibes, watching shoppers laden with their gifts and all the young people with their huge stein glasses. We then headed to the 1865 to watch The Style Councillors- I'm sure you can guess from the name they're a Style Council tribute act and they were on fine form. I only know a few songs but David was in his element watching the 9 piece band, singing along to the funky tracks. Evenings like this are memories to be treasured.
Sunday was another busy day as we took part in a Santa dash in Lymington. The 3k run was to raise money for the local hospice and David was excited to dress as Santa for the first time in his life! Joined by my work colleagues, Lymington High Street was a sight to behold with hundreds of adults, kids and dogs decked out as Father Christmas. We were not sure if David would be able to run any of it after the parkrun but he declared his legs were up for trying and we did jog the first kilometre before walking, mainly because the suits were so hot! We did however manage to run over the finish line and treated ourselves to a well-earned coffee. Not just any coffee but a panettone latte!
16 years later, the 27th November was also the day we travelled to Oxford together to the John Radcliffe hospital for an expert second opinion. We were in no doubt of David’s diagnosis but as he had been referred to Oxford for consideration of a research trial, getting a second opinion was part and parcel of this appointment.
We both had the day off for the appointment and had decided to head up early to visit the Wasteless Wonderland – an eco-market in the main shopping centre. It had been featured on South Today and sounded right up our street and a nice way to spend the morning before the big appointment. A bit of festive shopping and eating was just what we needed before what could be a heavy afternoon. After finally finding it, we were dismayed to discover it was closed for the day and David insisted he was going to write a letter of complaint to the BBC for false advertising! We didn’t fancy any of the big shops so looked for lunch instead and ended up with two tasty tofu curries.
With the weather wet and not much else to do, we decided just to head to the hospital early to grab a coffee and cake and luckily, this was a sensible decision. Any patient coming for a visit to Southampton hospital will comment on our limited parking but the JR hospital was something else! We were getting lost and flustered, driving round and round, in and out of different car parks trying to scout a space. We finally ended up parking outside the maternity unit which unbeknown to us, was on the complete opposite side of the hospital to where we needed to be. Another frustrating and confusing walkabout ensued trying to find the neurosciences out-patients department. I have worked at Southampton hospital for nearly 25 years and despite the fact they keep adding bits on here and there, I know the site inside out and back to front. I could easily direct a patient to a ward or clinic but at the JR, I felt very lost and vulnerable and it really made me think about the lost patients I see wandering the corridors of my own hospital every day. We were up and down in the lifts and backwards and forwards down corridors until we finally found where we were looking for and successfully checked in.
There was a short, nervous wait with the other patients before we were called in to see Dr Turner, a professor of clinical neurology and neurosciences with a specialist interest in MND and research. We immediately warmed to him as his manner was open and honest. He asked what we wanted out of the appointment and did we have doubts over David’s diagnosis? As we didn’t, we moved onto discussing the potential causes, progression and prognosis. When David was diagnosed in July, his hands were unaffected however, his hand function has deteriorated over the last 4 months and his concern was that the speed of this deterioration would overtake his legs. However, the professor reassured David that the area where MND starts, is the area that takes the biggest and fastest hit. Just imagine for a moment what it must feel like to actually feel pleased you will lose your leg function first over your hand function. But we are faced with the situation where this was ultimately good news as it will still give David some independence, even in a chair. We asked again about walking time scales, in particular Rachel’s wedding and again, we were reassured that although mobility will be significantly declining over the next few months, and although it may be difficult, David should still be able to walk his daughter down the aisle. He did warn however, that standing up for the whole father-of-the-bride speech will most likely be very difficult by then and a stool to perch on should be sourced. MND is a very individual disease and affects people differently so most medical professionals have shied away from any real timescales or prognosis but the professor did tell us that David does not have the slow progression we once thought he had and in actual fact, is ‘average’. He was careful to stress to us the importance of ticking things off his bucket list sooner rather than later so this is now more time-critical than we had once thought. Hard and sobering news to hear but did very much put timescales into perspective. Some good news though, he did have a look at David's mouth and confirmed his tongue was still unaffected so for now, speaking, singing and swallowing are all safe from the ravages of this awful disease.
Speaking of averages, the professor told us David really does tick a lot of the ‘averages’ boxes – a fit man who has taken care of himself over the years, has maintained a normal weight and who has a good metabolism, meaning he hasn’t succumbed to a ‘middle-aged spread’. Nearly all causes of MND are unknown but he did reassure us it was nothing to do with ‘burning out’ your body through exercise and it is mostly just the way you are put together. So we will never really know the true reason David’s nervous system has packed up in such a catastrophic way and it will not do anyone any good to dwell on why it has happened as will most likely never find out.
We then came on to talk about potentially signing up for a research trial however, Oxford have nothing to offer right now until they open a study in the new year. This would involve monthly visits to Oxford for the first part of the study and the professor stressed that David’s time and quality of life was essential right now and that we had to weigh up carefully if a whole day taken for one appointment for a trial that might involve a placebo was worth it to us. After sitting in a horrendous traffic jam trying to get out of Oxford to get home, we both agreed that no, it wasn’t worth it. This does still leave us with a Southampton trial which has the convenience factor but does come with the risk of not only getting a placebo, but with no opportunity to get the actual study medication at a later stage. We discussed this and I think we are both resigned to the fact that this is the best option and if there is no benefit to David directly, someone has to get the placebo and all information gained will still help in the overall fight to get a cure for MND.
We were in the consulting room for over an hour and felt like the professor had given his time to us generously and been very honest with us. He asked if we were receiving psychological support and we do have input from our local groups and MNDA visitor. We also have wonderful families and friends checking in regularly. However, he did remind us that it is often the partner who struggles more mentally than the affected person so we need to keep this in mind moving forward. We do talk about it, laugh about it and cry about it together so we feel we do a good job of looking after each other. We talked about it on the way home and we both seemed to feel ok that evening but this seems to be the normal pattern for us now of feeling ok on the day but then really feeling the kick later. We met up to walk home from work on Tuesday and David’s legs felt weak and he struggled to walk with a stick on one side and me on the other. This made us both feel teary and sad and David couldn’t even make it to Sainsburys so headed home while I picked up the shopping and cooked dinner. A taste of what is to come when I have to do this every day, as David’s carer. David gets very tired now so called his mum to update her on the appointment and then headed up to bed around 7pm. Sometimes this can be a good thing as it means we get our own space and time to mull things over.
Despite these early bedtimes, we are still out and about plenty! Sunday we were out for a Christmas meal with our vegan runner friends and Thursday was a meal out with family.
Thursday also marked the day that David formally announced to everyone at work his retirement date which will be 14th December. I know that despite enjoying his job, the walk to and from is becoming just too hard and leaving just before Christmas seems the perfect time. He won't have to get up in the dark and cold and can stay at home, listening to records, reading books, watching films and sports and sorting his clutter out! I know he will miss everyone and I will miss knowing he's only one floor away but it's time to close that chapter of his life now.
David and I have always loved Christmas and he was excited for the start of advent and opening the first door of his 4, yes FOUR advent calendars. A traditionalist, he opted for one chocolate one (thanks to my mum for sending) and 3 picture ones, one of which he had last year but just pressed all the doors shut again! David and I always sleep with the radio on, 6music being our channel of choice, but we treated ourselves to Christmas radio. Both of us wake in the night sometimes so it was lovely to lay there listening to the festive tunes and thinking about this Christmas time together.
We had a really busy but festive weekend. Saturday morning we finally ticked off our NENDY parkrun. To those not in the know, NENDY is 'nearest event not done yet' and Whiteley had been the one to do for a few years. We'd not been enthused about it as most people report it's a bit boring compared to some of Hampshire's more scenic routes but we decided this week it had to be ticked off and as always, there were friends who wanted to come too. We woke to freezing conditions and as David and I always run in shorts, we were shivering on the start line. David found it to be a tough run, possibly due to the cold affecting his muscles. The course was fairly flat but he needed two of us to help him on the inclines and a few times, his feet scuffed on the ground. This concerns us both because as much as David wants to keep running, we can't risk a fall so we've been talking about when the right time will be to switch to parkwalking. That will be a sad day but we're not quite there yet.
After a post-parkrun coffee and home for a rest, we then bussed into town for a festive evening. We had dinner and both did a bit of Christmas shopping then headed to the big wheel.
David has always had a fear of heights and was conflicted by both wanting to go on the tallest wheel in the UK but also feeling terrified. Sure enough, as soon as we got on and lifted into the air above the town, David came out with the classic lines I've heard many times during rollercoaster rides and views from towers. 'I don't like this', Oh God' and a few swear words were repeatedly proclaimed while gripping the pole in the middle. I tried not to laugh but sorry David, it was funny!
To take the edge off, we chugged a cherry Gluhwein from the German bar and enjoyed the vibes, watching shoppers laden with their gifts and all the young people with their huge stein glasses. We then headed to the 1865 to watch The Style Councillors- I'm sure you can guess from the name they're a Style Council tribute act and they were on fine form. I only know a few songs but David was in his element watching the 9 piece band, singing along to the funky tracks. Evenings like this are memories to be treasured.
Sunday was another busy day as we took part in a Santa dash in Lymington. The 3k run was to raise money for the local hospice and David was excited to dress as Santa for the first time in his life! Joined by my work colleagues, Lymington High Street was a sight to behold with hundreds of adults, kids and dogs decked out as Father Christmas. We were not sure if David would be able to run any of it after the parkrun but he declared his legs were up for trying and we did jog the first kilometre before walking, mainly because the suits were so hot! We did however manage to run over the finish line and treated ourselves to a well-earned coffee. Not just any coffee but a panettone latte!
We finished the weekend by putting up the Christmas tree and Fin even put his festive jumper on for the occasion! Listening to Christmas music, we unboxed the lights and got decorating. Our tree is the most mismatched tree going - everything on it is random but also sentimental.
Some decorations were made by our children, some bought on holidays years ago and as we got them out one by one, we were remembering where they were from and the lovely times we've had together. We both know Christmas will never be the same again so in the words of Yoko Ono - 'let's hope it's a good one'
Lovely update xx
ReplyDeleteThank you x
DeleteI have to say you two really are amazing together what a team! Love to you both. Maria xxx
ReplyDeleteThank you Maria x x
DeleteThank you for sharing. Love to you both. Matt S
ReplyDelete