November 2011 - Baby’s First Birthday – Heart Racing

We’ve just read the whole blog and I have to say we’re both very pleased with how it reads. Yes there are a few details missing here and there, I forgot to mention that Carol was fitted with a catheter during that 3 week hospital stay back in April and it’s been there ever since. We decided that was the most sensible option as it removed all of the additional hoist transfers Carol would have to make throughout the day (wheelchair / commode / wheelchair etc). There was also a great App that we bought for Carol’s Iphone early in 2010 – ProLoQuo2Go – it’s an American software programme that uses pictures and text to aid communication. It was simple to use and easy to carry around, being on the Iphone – Carol really liked it as an alternative to the bulkier Litewriter.

When I look back to the beginning of 2011, having been through everything that 2010 had thrown at us, I must confess to being less than positive about what this year would bring. I remember talking to Bec and saying that if Carol made it to Christmas we’d be very fortunate. The disease is such that I had no evidence to back this up, but I was looking at what would happen if we had another year as aggressive as 2010 had been – now I’m thankful that hasn’t come to pass but I was really just trying to prepare everyone.

One thing I didn’t think Carol would see was our beautiful Veronica Mae’s first birthday – but here we are now into November and Carol is still smiling and battling on. I think having baby in our lives has made a massive difference to Carol – again there’s no medical proof of this but to see the way Carol’s face lights up whenever baby is around is evidence enough for me. As I’ve said earlier Carol has always been a fantastic mum and the children have always been first and foremost in our lives – and baby has brought the light back when times were looking dark.

It’s scary to think that first year has passed already but 5^th November arrived and we had a house full of presents. The animal train wasn’t quite the hit at first but the Smart Trike went down very well, especially when James and Samm took Veronica for a spin around the boating lake on it. The rocking horse and animal zoo will come into their own at a later date I’m sure – there was just so much going on and it was a little overwhelming. We didn’t know it at the time but baby wasn’t well on her birthday, a doctor’s visit was required the next day and she was diagnosed with a virus that knocked her out for a few days – it was quiet in our house the next week without her there.

Carol’s not been feeling too well this month either, I’ve already mentioned how tired she’s started to look and that hasn’t changed – if anything it’s worse. But Carol has been experiencing heart palpitations on a daily basis for about 3 weeks now. These have happened in the past but never with such regularity, and it’s stressful for Carol when her heart begins to race. We had a problem with the commode a few weeks ago, where Carol was starting to have trouble breathing when sat upright for any length of time. This was resolved with an OT assessment and delivery of a new commode (with a tilt function) but the palpitations have continued. There’s no warning, you just see Carol’s facial expression change and her breathing becomes shallow – and then you can see and feel the pulse racing.

Initial doctors’ visits didn’t find anything, chest was clear, blood pressure and temperature ok – Carol was treated for a UTI just in case but that didn’t stop them happening. We resorted to using one of the medications that Carol had been prescribed as a quick fix, it’s actually to help her relax and sleep better so gives the right end result, but it wasn't the solution.

It did help to calm Carol down when the palpitations started but also made her very drowsy. Now you would think that would be a help when it came around to bedtime but that’s not the case. For reasons we’ve yet to work out Carol’s sleep is worse since all this started – even the Clonazepam at night isn’t doing the job anymore.

Dr Anderson has visited again this week and everything still seems to be ok – heart, chest, blood pressure – the doctor thinks it’s anxiety, so in reality Carol’s having panic attacks. Looking at how these episodes develop that does make a lot of sense and new medication has now been prescribed. Carol’s prescription list currently has 31 items listed – just to give you an idea of how many different things have been tried over the last couple of years or so.  

When I started out to write this blog I prepared all the post titles so that I could plan how it would look – and there’s one I’ve still not got round to typing. The title is “what about me?” - I’ve spent the last few weeks bringing Carol’s journey to life so would it be selfish to write a post about me? Will I be able to get the wording right so I don’t sound like an idiot – or worse? Does anybody want to read about me when Carol is the one going through all this? Maybe the carer’s side / my side needs to be out there to complete the picture – both the positive and the negative. It’s not going to be an easy post to write but I think I need to do it.

August – October 2011 – Plateau Continues – A Couple Of Shows! – Tired

This period was probably the most settled of any so far. Carol had certainly reached a point where her general health was well controlled. We had the right medications and a care package in place around Carol that covered all her needs.

We’d met with Amy to discuss Carol’s Advanced Directive and had made changes to the instructions around breathing support. Amy had outlined the various options and Carol remained adamant that non-invasive support was all she would accept. This was written very clearly into Carol’s notes so there would be no misunderstandings should the time ever come.

We also talked with Liz (Mcmillan Nurse) to put a “just in case” scenario together should Carol become ill again. Carol was worried about possibly having to go back into Treliske, if there was another chest infection, and wanted us to do all we could to avoid this. Liz advised that it may be possible to introduce Mcmillan support to treat Carol at home should the need arise, which was good to hear. Additionally there were 2 specific medications prescribed for a “just in case” situation and these are now in the house and available for nurses / paramedics to use immediately should Carol become distressed – an early intervention to calm Carol down before any treatment would begin.

With Carol’s reduced mobility we’d stopped attending any kinds of outpatient appointments and Carol was very much housebound now. When Carol’s hands stopped working we’d had to move the wheelchair control onto the handle behind the seat so it could be driven by somebody else – it took some getting used to and we also had HSC limit the speed to stop us crashing into walls and things. Although Carol is comfortable the majority of the time in this chair her position needs to be changed throughout the day. When the healthcare assistants visit they hoist Carol up onto the bed for a few minutes rest or just into the air for a backside massage (and the happy slapper comment still makes them all laugh today!) We have to shuffle Carol or move her shoulders, stretch her legs and move her feet at various times – even in the comfiest seat there’s no fun in being sat in the same position all day. Carol’s general body weakness is another reason why she doesn’t like to go outside much these days. The wheelchair is good but Carol’s body now moves around in it constantly when it’s being driven any distance at any speed above 1, she just doesn’t have the body strength or head control to hold her position stable.

The one thing I started to notice over the last few weeks was Carol just seeming to become more and more tired – physically and mentally tired. Sleeping at night wasn’t brilliant anyway, and we’d moved to PEG feeding during the day to help this, but by the time early evening came around Carol was nodding off. At weekends, when I’m with her all day and the house is generally quiet Carol goes back to bed for an hour or so in the afternoon – but she doesn’t do this during the week as Samm and Veronica are here looking after her and the house is always busy. The impact of this was visible as we got into the evening but I felt the level of tiredness Carol was displaying was more than that. I started asking questions about progression again – is this just the next stage?

You see it’s been pretty straightforward to measure progress so far – parts of the body stopped working and that was the disease progressing. But once all of those areas had stopped working it became difficult to monitor changes in Carol’s condition. Yes, you can see muscle definition and you can watch Carol’s weight, but physical changes seem minimal to the eye. You start to wonder just what the disease is doing to Carol now – and what’s going to happen next.

Then you turn back to the positives and that mantra comes in useful again.

Carol was invited back into Marie Therese House but politely declined this time - the team understood why Carol opted to stay at home and there's an open offer of a room should Carol change her mind.

At the end of September we celebrated Rebecca's 18th birthday. It was a quiet celebration for us but Rebecca went out with her friends for the evening - Carol's beaming smile that day defied the disease and showed her strength and inspiration to us all again. 

In October we got to see a couple of shows in Truro – our taxi driver helped us out and we went to see “Buddy” with Kyle, Sue, Tom & Jo. Now this is a show that we’d seen many times back in the 90’s, before we moved down, and it was always a real favourite. You just can’t go wrong with that brilliant music and the story is told really well.

A couple of weeks later I took Carol to see “Fascinating Aida” – you must have seen the “cheap flights” video on YouTube – it’s a classic! Anyway these 3 ladies are quite superb, very cleverly written and performed songs that had the whole place in hysterics – I’ve not heard a crowd laugh that loud for a long time and Carol really enjoyed herself again.

So from what I set out to do a few weeks ago I’ve finally reached the last of the historical posts. This brings Carol up to date to the end of October 2011, so from now on I can post in real time. We’ll sit down and read all of these over the next few days and probably start to see things I’ve missed or want to change – but I’ll resist that and be happy that what I've written is a pretty accurate record of the journey so far.

My beautiful wife is quite simply the most wonderful lady in the world – to me she’s my much better half - I love her with all my heart and owe her everything. I’ve tried to be the best I can be for Carol and the whole family throughout this journey – I’ve got a lot of things wrong but I’ve also got a lot of things right. There’s no instruction manual you can read to help you out with MND – you’ve just got to get on with it the best you can…..and I think we’ve done that.   

May – July 2011 – Losing Hand Movement & The Search For Suitable Switches – Reaching A Plateau - A Week In MTH

From a general health perspective the next few months would certainly fit with my mantra – “no news is good news”. Carol’s condition had definitely reached a plateau and didn’t tend to change much from day to day. This wasn’t seen in any way as progress but MND is about making the most of what you have – and a plateau was something to make the most of.

Unfortunately, while Carol was in the main feeling ok the only thing left to go wrong did indeed start to go wrong. The thumb / forefinger on Carol’s left hand just stopped working – well, there was still some movement of sorts but it was no longer strong enough to press the buddy button (or any other button for that matter). That of course meant we’d have to try and find a different type of switch for Carol to continue using the laptop – and that was a vital piece of equipment for communication so we needed to sort it quick.

We tried a “blink switch” – this works by reading the blinking action of an eye to replicate what Carol had been doing with the push of a button. Great idea and a very simple piece of equipment but Carol’s blink reflex just wasn’t strong enough to make it work.

“SmartNav” was next – this has a dot sensor that can be placed on the forehead / on a pair of glasses / on a peaked cap and it is read by a camera attached to the laptop screen. The camera reads the movement of the dot as a mouse moving the cursor around the laptop screen – so as you move your head the cursor moves - very clever stuff. Unfortunately, although we got this working, Carol just didn’t have the full range of head movement required to cover the whole screen. The wheelchair headrest and support collar limited Carol’s movement too much, but we couldn’t remove them as they were supporting Carol’s head and neck.

“Buddy Button / Manfrotto Arm” – at present this is what we’ve ended up with. It’s far from perfect, and Carol really doesn’t like it, but it does the job. The buddy button that Carol used to use with her left hand is now attached to a flexible metal arm that holds the button by Carol’s head. Carol presses the button with head movement and this works in exactly the same way as it did under Carol’s hand.

The search continues and we have identified something called the “Tobii PCEye” which appears to be the answer to the prayers of everyone with mobility issues as severe as Carol’s. It all sounds very technical but the movement of the eye acts as the cursor moving around the screen – so no head movement is required. As I said it could be the solution for many people out there – but the price is definitely prohibitive – it’s almost £6000 to buy!! I contacted the UK distributors to see if we could loan or rent the equipment – one company will do a loan but only for 2 weeks and the cheapest rental quote I got was £367 per month – that’s far too expensive for us I’m afraid.

For the first time since November we managed to see a show – there’s a local taxi firm who we’ve now linked up with and he’s got us out and about at last. This show was actually on my list for London but we didn’t get to see it there. We went to Hall for Cornwall to see “Dreamboats and Petticoats” in July – an excellent show with brilliant music – Carol had a great night and when I see that smile and her head moving in the wheelchair I know she’s dancing!

Carol had been invited back into MTH for a weeks’ pampering and this was very different to the last time she’d been in. Carol was healthy this time so was more able to cope with being moved around and the whirlpool baths were definitely on the menu for the week. I think because Carol was healthy she didn’t actually enjoy being in there, as she’d have felt much better being at home. I know these weeks are also designed to give the family a break but it doesn’t work like that. I was going down to see Carol straight from work and not getting home until late – and then I couldn’t sleep as I’m so used to listening for Carol’s movements during the night now. In the end Carol couldn’t wait to get home and she has so far refused further offers to go back in.

During that stay I’d arranged to have a day off so I could go to London to see a show – those that know me have heard the story and I’m not going to repeat it here – but it was a decision I’d live to regret (and I’m sure Tom does too). I think Carol put the jinx on the trip as I was going without her – but I’ll never eat Chinese again!         

March - April 2011 – Botox Revisited - Chest Infection & 3 Weeks In Hospital – Secretions Problem Solved!

March began with the second botox injection – and still nothing happening yet.

In general Carol’s condition seemed to plateau – it may have been the fact that we’d stabilised the feeding regime, so Carol was getting the right balance of nourishment each day, but I believe it was almost as if the progression of 2010 had taken Carol’s body as far as it could go and there was very little left to stop working. At this point the only things Carol could still move were her left thumb / forefinger, which she used for communication, and there was still a degree of head movement possible with the support collar in place – but most importantly she still had that fantastic smile!

“No news is good news” would become a bit of a mantra over the next few months – whenever anyone would ask how things were going it was the automatic answer. In fairness most of the time it was the truth!

The beginning of April did catch us out though, and it was very quick. Carol had been back for the third botox injection on Wednesday (it still wasn’t working by the way) and had been feeling ok for a few weeks. On the Friday of that week the carers noticed Carol looking a little flushed through the day and by the afternoon visit she was in real distress. I arrived home to find 2 care assistants and 2 nurses in the house (1 nurse was talking to the doctor on the phone) and Carol struggling to breathe. I could see there was a real problem but Carol was refusing to let us call an ambulance. The PEG episode in Treliske had really put her off hospitals.

After a lot of begging, and me relaying to Carol what the doctor was saying about her needing to be assessed, we finally called the paramedics. The fact that it was late on a Friday meant there was little back-up in the community going into the weekend – limited GP availability means it’s always the worst time to get sick! They did a quick check and called an ambulance immediately – Carol had a chest infection and needed to go straight into hospital.

So we ended up in A&E at Treliske with a doctor assessing to confirm the chest infection and Carol was admitted immediately and put on medication. Having the experience of last year and the PEG I again made sure that someone stayed with Carol as much as possible. Carol ended up being in Treliske for a week (Friday – Friday) and I slept there for 4 of the 7 nights. I’d spent 2 really uncomfortable nights trying to sleep on a chair before they wheeled out a massive recliner from storage, so the remaining 2 nights weren’t anywhere near as bad. The whole family took turns to sit with Carol during the day, so I could show my face at work and Sue, Jeanette and Mags were also a great help during this stay.

Carol was moved around the first couple of days before being settled into a private side room on a ward – this was good from the privacy viewpoint but slightly worrying as Carol couldn’t call for help. There was no way for Carol to communicate with the nurses now as the Litewriter was long gone. We were using the laptop at home and our letters sheet – basically a double sided A4 page with the alphabet printed on it. Carol would look at the letters and we’d build the words – simple but effective, as long as you didn’t forget where you were in the sentence!

Carol was on oxygen and medication / fluids for the first 5 days. They were concerned because they couldn’t get Carol’s blood oxygen level above 95% for any length of time – it kept dropping if they removed the oxygen mask. There was a marked improvement on day 6 and we started talking about getting Carol out of hospital. The doctors were worried about a relapse so insisted that Carol went into Marie Therese House for ongoing monitoring before being allowed home. MTH is a small unit that specialises in care for illnesses like MS, MND and also brain injuries – it was also the place where we’d had those early appointments with the physio team – the place where Carol had initially not wanted to go. At this point though we didn’t have much choice in the matter - it was move to MTH or stay in Treliske – as I said not much of a choice.

However, on a positive note one major breakthrough did occur while Carol was in Treliske – and it was a really important one for Carol – we found a solution to the secretions problem at last. It came from a discussion with one of the many doctors we saw over that week after I explained how the problem had been affecting Carol for so long. He prescribed Glycopyrronium Bromide injections – we’d actually tried this many months earlier in tablet form and it hadn’t worked. But this time it was like a miracle – within 20 minutes of the first injection the secretions stopped! We monitored it closely over the next few days but daily injections did the trick – hallelujah indeed. This would continue as a permanent fixture, being administered via a syringe driver over each 24 hour period, to minimise the use of injections and ensure the effects of the medication would not wear off.

Carol was moved to MTH on the Friday, Mags went in the ambulance while I followed in the car. I have to say I was very impressed with MTH, this was a side we hadn’t seen before as our previous visits had been straightforward specialist appointments. There are only 12 rooms, all of them private, so the patient / nurse ratio is much better than Treliske. Dorrie welcomed us and took all of Carol’s details, including medication, mobility, sleeping and feeding information. There were no real restrictions on visiting so Carol could have company pretty much all the time. We all spent days with Carol - Sue, Jeanette, Mags, Tess and Steph all visited and Theresa also came down to see her which was really nice.

As each day passed Carol felt a little better and started to ask about coming home. Timing is everything I suppose and it turned out that the next weekend was Easter – which meant there would be limited cover in the community for a longer period and the medical team were worried about sending Carol home just in case she hadn’t fully recovered. Carol wasn’t happy about this but we needed to listen to the doctors so Easter was spent sat in the hospital.

Carol eventually came home the following Friday – 3 weeks since she had been admitted into Treliske. I felt Carol was weaker again but it was getting harder to judge as I’ve already said – nothing was really working but it was just my perception of further muscle wastage, and what appeared to be less mobility in Carol’s left hand.

There’s no evidence to suggest that Carol had a reaction to the botox and that brought on the chest infection – maybe it was just a coincidence - but we’d found a solution to the secretions problem that worked long term so there was no need to go back and try it again.        

January – February 2011 – Getting Feeding Right - New Wheelchair - Communication Challenges – Botox - Planning Carol’s Funeral

New Year started with us still trying to get Carol’s feeding regime right. As I’d said earlier we’d be moving Carol onto total PEG feeding during this period as it became more of a struggle to give anything by mouth. Carol also had to stop taking drinks so fluid was flushed in through the PEG using a syringe. Initially Carol was on the 1 litre / 1000 calorie feed but this just wasn’t filling her up so we moved onto the 1 litre / 1500 calorie feed instead. We were also given milkshake energy drinks to use as top-ups whenever Carol felt hungry. The actual PEG feeding process was really simple and with the ability to put fluids and medication through the PEG tube it suddenly became much easier to control Carol’s daily intake. Carol was put on a 10 hour feed (at 100mls / hour) so we decided to do that through the night to minimise disruption with care visits and so on. This would work for a few months but eventually Carol’s sleep would begin to be affected.

As we’d feared Carol had lost mobility and leg strength while in hospital but the new equipment was really helping. However, we did identify a problem with the hoist in that it wasn’t allowing the full range of movement we needed to comfortably transfer Carol between bed / chair / commode. So a new Arjo electric hoist was brought in and this one had the facility to tilt the sling, which made a massive difference to how we could manoeuvre Carol around. This is an excellent piece of equipment and it has made our lives much easier.

Solving one problem highlighted another, as it so often seemed to do, and Carol really needed to be assessed for a more comfortable wheelchair. This was all due to Carol’s upper body becoming weaker and us noticing how she sat when upright in the chair. As Carol now spent all day in the chair we were concerned about her comfort and wanted something with more support. HSC Mobility came out to assess Carol and agreed that a new chair was required. They ordered one with a larger seat and more comfortable armrests, plus a tilt facility to improve Carol’s positioning. It took a few weeks to arrive but this chair would make a huge difference to Carol’s comfort during the day. 

Carol’s fingers were now beginning to struggle with typing on the Litewriter keys so we had a discussion with the Speech Therapist. She supplied us with a similar machine that had a scanning facility – basically the letters are highlighted in turn on the screen and Carol would press a button to select them to build the words. This sounded like a good idea but in practice it was not very user friendly for Carol so we sent it back.

Changing direction I spoke to Ros, our local MNDA co-ordinator, and she arranged for a laptop to be loaned to us through the MNDA. This was supplied by AbilityNet and had the Grid2 software installed. I went through a tutorial over the phone with them to set the laptop up to Carol’s preferences before we could use it. This solved our immediate problem as the system was just what Carol needed. Carol was still struggling to type but we had a buddy button supplied that Carol could press to select letters / words / items that were highlighted on the screen. I was impressed with this system and it certainly did the job for Carol, she was now able to use the internet, text via her mobile phone and use the speech facility to talk to visitors at home - and since the Litewriters had gone back she'd stopped swearing so much!

I’ve not mentioned the secretions problem for a while but it was most definitely still there. Despite everything that had been going on and Carol becoming weaker this remained the one thing that Carol was most concerned about. The saliva build up was constant, as I’d explained earlier Carol was struggling to clear her throat due to a weakened swallowing reflex. Carol was wearing bibs / kitchen roll over her collar and the almost constant dribbling really bothered her. I’ve lost count of how many different medications we’d tried and even those with side effects of a dry mouth hadn’t worked, and then someone suggested botox. This was a new one for us and involved an injection into the saliva glands in the neck with the end result of hopefully stopping the secretions. Carol was a little unsure but I think after struggling with the problem for so long she just wanted a solution. We went along for the first injection in February – the doctor was very nice but advised that nothing would happen immediately. The injections would need time to work so patience was required and after our next visit Carol may start to see some changes (but that wasn’t due until March).

Here’s one of those delicate subjects that many of us just don’t know how to handle – me included. I’d been thinking about what Carol’s funeral wishes would be for a long time and decided I’d ask her to tell me – so I didn’t get it wrong – the problem was I just couldn’t seem to start the conversation.

Now this is the absolute truth as well as one of those coincidences that just make you go “huh?”. This particular day I’d had a chat at work with Tom and said how hard I was finding it to broach the subject, and we agreed I’d go home and do it that day. When I got home Bec was sat with Carol and I could see they’d both been crying. Bec had a scribbled note in her hand where she’d written down what Carol had asked her to do for her funeral – I don’t care what you say, that’s just spooky.

Anyway the subject was now open so we sat down and went through what Carol wanted me to arrange. It was upsetting but also pleasing to know I could do exactly what Carol wanted rather than what I might think she’d want – and I’ll tell you I would have got a lot of it wrong!

Carol wants the service to be in Cornwall, a cremation and in her own words “no god crap!” Carol has asked for specific songs – “Suspicious Minds”, “Sherry”, “Never Forget”, “Sweet Child Of Mine” and given me a list of places where she would like her ashes to be scattered – the lawn at Graceland, the Jersey shore and Liberty Island to name just a few. I organised the whole thing with a local funeral home and that’s one less thing for us to worry about – let’s just hope we don’t need it for a while yet.    
               

"Friends"!

Now this post could very easily turn into a rant and I don’t want it to be seen as that at all – and I’m not setting out to annoy or upset anyone here - this is just my own personal opinion, and everybody has one of those!

Firstly I admit I’m not any kind of expert to be talking about “friends”. I’ve never seen myself as being very sociable or outgoing and have always had just a very small core group of people who I would call my true friends. Yes, some of them have changed over the years, as I’ve done different jobs and seen people come and go, and I’ve got to confess to never being good at staying in touch when I’ve moved onto other things – but that’s just me.

Maybe that means I cannot really profess to being a true friend to those I no longer keep in touch with – point made and taken.

Carol was always the social one, the happy chatty one, and that suited me fine as I could keep out of the way and let her enjoy herself. Carol always knew that I was a miserable sod – but that’s why we worked so well together, it’s those 2 halves of the coin you see!

Anyway, I’ve had to do all the talking for both of us over the last couple of years so Carol’s certainly seen me have to change my approach after being silent for so long.

“Friends” is a word that’s been diluted with all this social networking and nonsense – Facebook friends, those people you’ve never met but they’re Facebook friends with somebody else you’ve never met….and on it goes – I told you I was a miserable sod!

What I’m trying to say is that, when you find yourselves in a situation like the one we’ve been in over the last few years you do ask that question – just who really are your true “friends”?

I haven’t got the answers but my thoughts are pretty simple – a friend doesn’t disappear.

A friend actually comes to you and helps rather than just saying “if there’s anything I can do” when you know they really don’t want you to ask.

A friend will sit with you – they don’t have to say anything, and they know they don’t really have to but they’re quite comfortable just being there.

A friend will listen – that’s all just listen.

A friend doesn’t try to burden you with their own problems – they may talk about things going on in their own lives but there’s understanding of your situation and perspective on what’s actually important.

A couple of years ago I would sympathise with those “I just don’t know what to say” comments – but eventually they just made me angry.

Why do you feel you have to say anything different to what you would normally say? Carol is still Carol.

Carol has a disease that will affect her personally in ways we can’t imagine – so the last thing she needs is you hiding behind “not knowing what to say” – why is it suddenly so difficult for you to talk to Carol as Carol?

Why do you no longer see Carol as Carol?

I’m sorry but I really don’t have time for that anymore.

There are a few true “friends” who we know we can absolutely rely on, and they are worth their weight in gold. Theresa back in Timperley is always there for Carol, Sue has been fantastic and keeps Carol’s spirits up along with Jeanette, Tess and Steph always bring a smile to Carol’s face, and Mags has helped us out many times when we’ve needed it most. For me there’s Tom and Jo who will always listen to my waffle and Hils who manages to keep me grounded.

To you that may not sound like many “friends” – but to us they’re the ones who fit that word perfectly.     

November – December 2010 – Grandparents!! - 12 Days In Hospital For PEG Operation - Aftermath – Hospital Bed & Hoist At Home

The phone calls started as soon as we got home – Carol needs the PEG fitted now. I talked to Amy and Dr Anderson, and anybody else who’d listen, it was the priority plain and simple.

But there was also some fantastic news to celebrate with the birth of our first grandchild on 5^th November – Veronica Mae was born to Samm and Jim, and a light came back on in Carol’s eyes. There were so many feelings going through me as I sat in that hospital ward with our son and daughter-in-law, a beautiful new baby and my wonderful wife. So much joy – Carol had got to see and hold our first grandchild - but also so much sadness – this wasn’t how it was meant to be. We were going to run around with our grandchildren, to laugh and sing and play with them, to take them on holiday – that’s how it was supposed to be. Carol wasn’t meant to be sat in a wheelchair barely able to hold our grandaughter – I hope you will excuse me repeating that life can be very cruel. But you turn those feelings off and focus on the positives, we had a beautiful new baby in our lives, one that would bring so much joy to Carol (and the rest of us) over the coming months.

So how did it feel being a grandad at 43 – that wasn’t part of the plan was it? Well, what can I say – Jim was the same age as I was when he was born so who’s to say what’s best for him in his life? Jim and Samm are really happy together and are building a life for themselves – sounds familiar - and ultimately as a parent isn’t that what we want for our children? So a grandad at 43 – such is life – looking at yours and seeing a happy family, now that was the plan.

A couple of days later we managed to get over to Torquay to see “Spamalot” which was a really great show – it would turn out to be our last trip for quite a long time.

November passed with Carol’s feeding not getting any easier and then drastic action was taken. An ambulance turned up at the house to take Carol into hospital – this had been arranged behind the scenes to try and jump the queue but nobody had told us. I was certain Carol would refuse to go but she obviously realised the PEG needed to be fitted so in we went.

Now there are criticisms in what I’ll write next, but these are not aimed at the nurses we met. They work extremely hard and do a great job, but quite frankly a patient with the degree of support that Carol needed at that point had to have 24 hour care and Treliske could not provide that. When you’re on a ward with 25 other patients you’re not going to get that high level care. I quickly realised we needed to make sure somebody was sat with Carol all day, to deal with any problems, so we all took turns – remember Carol couldn’t speak anymore so was using the litewriter to communicate. Overnight, when I did have to leave Carol alone on the ward, we used a special alarm sound on the litewriter to call the nurses, as Carol couldn’t operate the bed’s emergency call button – but this regularly went unanswered.

Over the first 4 days Carol was moved between 4 different wards – and she wasn’t fed at all. Despite my protests they’d written in the notes that Carol was nil by mouth and nobody would listen. It took too much time before they actually provided us with pureed food so that we could try to feed Carol again, and those few days had left Carol’s ability to swallow even weaker than it was before.

My concerns about Carol being in bed were also ignored until the 6^th day when a physiotherapist finally turned up. I’d been trying to get somebody to help me move Carol around (using the belt and turntable as I did at home) but she was just left in bed. By the time the physio tried to move Carol she was so weak that her legs wouldn’t work at all when we attempted to stand her up. They had to use a stand-aid, which defeated the whole object, and I realised right there that we’d finally lost what little mobility Carol had left.

Mentally Carol was also getting more and more upset with each passing day. Spending time lay in bed in a hospital ward is no fun for anyone but Carol had more to cope with than most. Everyday we asked when the operation was being scheduled and nobody could tell us – it took a full week before a date was actually arranged, and that was set for what would be Carol’s 10^th day in hospital.

Thankfully the actual operation was a straightforward procedure and Carol was out of recovery quickly. We then had to wait another day before the PEG was used, and the dietician sat with us and explained how it worked. Carol obviously knew all of this, from her nurse training, but it was new to me. As I’d be the one mainly using the PEG it was quite a daunting prospect at the time. However, once I’d seen the feeding / flushing procedure I realised there was nothing to worry about and I was able to practice putting fluids in before Carol came home.

I could see the problems we’d be faced with back at home once Carol left hospital so I’d been talking to Amy about our current set-up and what could be done. A number of other conversations were had and decisions were made about equipment. I had seen that Carol had lost the ability to use her legs so the turntable / belt would no longer work. I was also very worried about trying to move Carol using the belt anyway – as it went around Carol’s torso and there was now a PEG in her stomach, so a hoist was brought in. The current sleeping arrangements couldn’t continue either so an electric bed was also brought in (similar to those in hospital) along with an air mattress for comfort. This new set-up would prove invaluable over the coming months.

Carol was in hospital for a total of 12 days – and that period cost her dearly in further loss of mobility, muscle strength and the ability to swallow food. Once at home, although we would persevere with trying to feed Carol as we had before, the PEG would become the only feeding option within a couple of months.

On the back of all of this Christmas had also come around again – how time flies – and it was interesting to look back and think that just 12 months earlier Carol was still walking around and we’d been about to fly out to Gran Canaria for New Year.

A lot had happened in 2010 – there were some real highs and also some deep lows – but it was hard not to look back on the year without seeing just how far Carol had progressed. I started looking forward at 2011 and wondering where we’d be in another 12 months’ time.

October 2010 – Canary Islands Cruise – Real Concerns With Feeding

We’re ticking something off that list of things we were going to do together – as our options on holidays became limited due to Carol’s progress flying wasn’t on the cards anymore, so a cruise was the obvious choice. Never done it before (which is why it’s on the list) and we needed a UK port for departure – Southampton it was. We booked with Royal Caribbean on the” Independence of the Seas” – a 10 night cruise with stops in Madeira, Tenerife, Gran Canaria, Lanzarote and Spain.

Everything plus the kitchen sink was packed up to go – no luggage allowance is a really bad idea believe me! Just a 4 hour drive to Southampton and parking on the quayside – that first look at the ship (wow is the standard response here) and on through the rigmarole of customs and check-in, although again the wheelchair assistance was much appreciated. Our room was on Deck 2 and disabled access which meant a lower bed, wider doors, wetroom with support rails all round and a seat in the shower. It was all very nice and our view was almost at water level for watching out of the window to see what was passing by – I was hoping to see whales or dolphins but didn’t catch sight of anything.

I’ll deal with the developing feeding issue before briefly talking about the trip itself – feeding Carol on the cruise was a major problem. We were surrounded by more food than you’ve ever seen in your life, different restaurants serving everything you could think of 24 hours a day – and Carol couldn’t eat any of it. We ended up ordering room service breakfast every morning and Carol had porridge or yoghurt or maybe scrambled egg. The thickener had come with us so drinks were treated the same as at home. Carol tried the main restaurant area once but became really self-conscious of the fact that I was having to feed her so all future meals (lunch and dinner) consisted of me going and eating by myself, while Carol either sunbathed or watched TV in our room, and then I’d find something for Carol and carry it back to the room so she could eat. Carol survived the whole trip on a mixture of mashed potato, passata sauce, yoghurts and sorbet or torte type desserts. Occasionally I’d try to mix it up with some soup or pasta or mincemeat / gravy types of meals – but any food with texture caused Carol to choke so we always ended up going back to those first choices – as I said it was a major problem. Carol was fed up by the end of the trip – and we both knew the PEG was our priority when we got home.

The ship was magnificent – they’re basically floating towns so everything you need is available for you. A massive gym, ice-rink, cinema, theatre (we watched a couple of shows – Rat Pack & Abba tribute’s), casino, ballroom, library and a shopping area. Everything sparkled and the whole effect was quite stunning. There were bars for drinks and quizzes and they even had an Elvis hour on our last night! There was a newsletter delivered to our room every night listing the activities of the next day. Swimming pools and play areas and fabulous hot whirlpools which actually hung over the side of the ship.  There was a climbing wall (I don’t like heights but did climb this), tennis court, crazy golf and a flow-rider (surfing and bodyboarding – really great fun!). A cruise is definitely something you should try – even if you only do it once.

Watching Carol whizz around the decks in the powered chair was certainly a sight - when she was in 5th gear you just had to make sure you kept out of the way and let her shoot on past you - she just didn't care! 

We reached Funchal in Madeira after the first couple of days at sea – with the weather warming up very nicely the further South we travelled. We’d been warned about the Bay of Biscay being rough but didn’t really notice it. We either had good weather or the ship was so large – I’m not sure which. We had a few hours in port so wandered around town, we stayed on the front so didn’t make it into the shopping areas and we didn’t really have time to go up in the cable cars which was a pity (not that Carol would have anyway).

Santa Cruz in Tenerife was next and we were able to get out and about again. I liked it there with the narrow streets and architecture – there was the large pool just across from the port and we sat in the park where there was a children’s sports event going on. Carol went shopping and bought clothes, perfume and various other bits I’d have to try and pack into our already bursting bags for coming home – that luggage allowance you see!

Las Palmas in Gran Canaria was our next stop and there was a big outdoor / extreme sports event on in town with stalls and equipment for sale – and very loud music. Carol looked around the market instead – much more sedate. There was also a shopping centre but, as it was Sunday, everything was closed – remember those days? We tried to find somewhere to eat but Carol wasn’t happy sitting outside – that self-consciousness creeping in again.

The last of the stops in the Canaries was Arrecife in Lanzarote. This was the only place where we didn’t get off the ship as the town was too far away from the port to walk – and transporting that powered wheelchair with Carol in it just wasn’t happening. It’s a pity we didn’t get to see the town - we had to satisfy ourselves with spending the day sunbathing on an almost empty ship – that was such a hardship (excuse the pun!)

Our final port of call was Vigo in Spain. This was another place I really liked, from the views along the channel as we cruised into port to the bustling centre of town. We had a good look around and there were lots of things going on in the port – Carol found her favourite shop in the shopping centre - Desigual – so we had to buy something just because we’d found it – no different to Regent Street or the Westfield Centre but there you go! There was a P&O cruise in port at the same time as us and we followed them out – it really was incredible watching those enormous ships move around.

Heading home we sailed through the Bay of Biscay again – a little bit more choppy this time but still minimal and as we travelled further North it started to get chilly – it was almost November after all – so time to say goodbye to the Winter sunshine. We docked in Southampton at 6am and it was a case of waiting in line for disembarkation then into the terminal to find our luggage – I have to say once again this was a very smooth operation. Next job was to try and fit everything back into the car before the 4 hour drive home – and there it was gone.

We needed to focus on the PEG when we got home and I don’t recall either of us thinking at the time that the cruise would be our last holiday – but it certainly turned out that way. 

  

September – October 2010 – Downstairs Bedroom – Sleeping & Feeding Problems – Hospital Showers - Our Last “Jersey Boys” Show!

Those good spirits began to fade as we moved through September. Carol had been having trouble sleeping for a few weeks but would now wake up numerous times during the night needing her position changed. Unfortunately Carol was no longer strong enough to move her own legs or roll onto her side so I needed to help. It was just that Carol couldn’t find a comfortable position for any length of time, and then she also started having dreams. There was nothing out of the ordinary in the dreams themselves except that they were vivid and would wake Carol up. That’s the thing about MND, the brain still works as well as it did before the disease appeared. So this previously active lady is trapped in a body that no longer works, with a mind that's as sharp as it’s ever been – life can be very cruel, and I know I’ve said that before.
  

We’d been having discussions for a while with the care team, and one of the specialists at Marie Therese House, and different medications had been tried without real success. So the next idea to try was a different mattress, a foam one like those on a hospital bed. That’s all well and good but these are single mattresses and we had a double bed – so here’s the picture for you – this single foam mattress is laid on top of our double mattress with a sheet covering them both. Carol sleeps(?!) on the foam mattress and I sleep(?!) on the 12 inches or so of our mattress that is still visible – there wasn’t much room for me to move! Anyway we persevered with this for quite a few weeks, but it didn’t really help to settle Carol’s sleep pattern down.

While all of this was going on the care team were becoming more and more concerned about Carol’s general body weakness. Transfers using the belt / turntable / stairlift were getting harder and Carol’s upper body strength when she was sat on the stairlift was now a worry. So we had to make the decision and move into the downstairs bedroom. We simply duplicated the bed set-up from upstairs, so the foam mattress was still in use, but Carol continued to be very restless.

This move downstairs made life easier for the care team and certainly helped them to relax somewhat as the stairlift was no longer being used. There was a new problem though – our bathroom was upstairs. Carol and the care team agreed that a daily bed bath was going to be the best way to solve the problem but they also arranged for Carol to have a weekly shower at Newquay hospital. So every Sunday morning I’d pack Carol into the car and drive over to meet one of the healthcare assistants at the hospital, and they’d give Carol a shower. I do recall plenty of laughter coming from that shower room, with the healthcare assistants usually ended up soaked, and it was a very welcome option while it lasted.

We had one final trip to London booked, as a treat for Bec’s birthday we took her and her friend Taneal up for the weekend. We stayed at the Holiday Inn again – in adjoining rooms – and had a couple of shows planned. We surprised Bec on Saturday afternoon with 2 tickets to see “Thriller” which is the Michael Jackson tribute show – but the two of us were obviously going to see “Jersey Boys”! Paula and Gary turned up as an added surprise for Bec and we had a meal together that evening. Sunday morning I’d booked us all on the London Eye and that was good, and I must compliment the wheelchair access and organisation of fast tracking for wheelchair customers – very much appreciated. Sunday afternoon’s show – can you guess? It was back to “Jersey Boys” again – I’m sure the theatre staff knew us by this point and for those keeping count it brought our total up to 9 shows in 9 months. What we didn’t realise at the time was that it would be the last time we’d see the show – as circumstances later in the year would have a real impact on our future options for travel. Anyway it was a great weekend and everybody enjoyed the trip.

The other issue that had started to creep up on us was that feeding Carol had become really quite difficult. Throughout the year there had been changes in what Carol could eat and drink, and you’ll recall that thickener was being used in liquids. As we moved into October I was getting more concerned about Carol’s feeding. I literally had to liquidise meals using a blender so that Carol could swallow them without choking. I’ve mentioned the fact that Carol’s arms and hands had gotten weaker throughout the year, but probably not made it clear that the impact of this progress would be that we were feeding Carol by this point. Carol could no longer hold a spoon to feed herself so we needed to help her with every meal.

My concerns were made worse by the fact that there had been no further movement on the PEG and we were about to go on holiday – I was just hoping there would be some way to get Carol through the cruise without incident.             

Physiotherapy & Alternative Treatments Carol Tried (Magnotherapy / Kinesiology)

Carol has worked with a Physiotherapist throughout her illness but has not really found this beneficial. That sounds quite harsh and I want to try and explain it without sounding too critical of the Physio or the team. Initially a referral to physio was a straightforward thing to do and the early visits were about monitoring limb and body movement and looking at exercises. We bought an exercise bike and cross-trainer just after the diagnosis so that Carol could work on her leg strength. In truth the cross-trainer didn’t last long as Carol’s legs just weren’t strong enough to generate the power needed to move the footplates, and the locking knee was painful. The exercise bike on the other hand lasted well into 2010 and Carol was still able to use it even after she’d moved into the wheelchair. From my viewpoint the physio treatment did initially help to relieve some of Carol’s discomfort and joint pain, and the stretches were helpful.

The problem with physio as a treatment is that as the various areas of the body begin to shut down you start to wonder what it’s actually doing. We think of physio as a way to ease pain or assist with rehabilitation but that’s quite hard to do with a disease like MND. What you find is that physio on arms and legs that no longer have any muscle strength, movement or definition has little benefit apart from circulation and joint stimulation.  Now that might be exactly what these muscles need but Carol began to feel there was less and less impact on her body and minimal effect from the treatment – Carol felt it was becoming more like massage.

As I said above I don’t want this to appear as any kind of criticism of the Physio herself, as she’s done as much as she could over the last 2 years. It’s more an observation of what is realistic in the treatment of MND (in a case like Carol's) and the physical therapy of muscles that have ceased to work – and that’s purely my own personal opinion based on our experience. Carol actually wanted to stop the Physio visits around the middle of 2010 but I insisted that we continue as I felt that any treatment we could get for Carol’s limbs was better than none – that was probably the only time I’ve won that kind of argument.

So what about “alternative" treatments – well there’s no bigger sceptic than me - but it wasn’t about me – it was about what Carol wanted so we had a look around:

Reflexology – Margaret practices a number of alternative therapies and Carol has had a few sessions of reflexology. That’s the stimulation of the body through channels that can be manipulated through the feet. Carol has always enjoyed this and still finds the treatment relaxing.

Massage – Throughout 2010 Carol had a regular full body massage at home. Jacqui would come round and set up her table in the lounge and this was always beneficial for Carol as a way to relax the body and soothe her muscles. Massage didn’t help control symptoms or delay progression but Carol enjoyed it – and that’s the whole point. After the PEG was fitted full body massage became impossible and Carol stopped the treatments. However, we have recently re-introduced massage with Jacqui for Carol’s hands and feet and this is again helping her to relax.

Magnotherapy – Not long after Carol’s diagnosis I met a couple, Phil and Kathy, who have their own business called “Changing Lives”. I’d twisted my ankle playing football (silly I know) and couldn’t seem to shake it off. I went along as a sceptic, but also thinking about Carol, and Phil treated my ankle. Magnotherapy involves using magnets to treat ailments / injuries / illnesses of the body to stimulate blood flow and effective repair of the affected area. What a load of rubbish I can already hear you shouting – well Mr Sceptic was indeed turned! Phil wrapped my ankle in magnets and within 20 minutes I felt better – I don’t have an explanation but can honestly state that it worked for me with that specific injury.

Anyway I talked to Phil and Kathy about Carol’s diagnosis and the changes that had already occurred and Phil was adamant he could help. Carol was quite happy to give it a go and so we started what would become a long standing treatment programme. Over the coming months I would watch Phil treat lots of different people, while Carol was being treated, and there were many expressions of surprise when the magnets came off and people felt different!

Phil has to be one of the most positive people I’ve ever met and his belief system is infectious. You can’t help but feel better when you’ve spent an hour with Phil and Kathy and the treatment certainly does do something. As far as Carol’s condition was concerned I didn’t believe we were heading for a cure, although Phil always maintained he could beat MND, it was just about exploring the treatment and seeing what that could do for Carol. We visited pretty much every weekend we could between September 2009 and September 2010 and Phil always found time to treat Carol, even when they were already busy with customers. I offer our sincere thanks to both Phil and Kathy for all their help and support during that period, it was an unexpected opportunity that helped us both a great deal.

I suppose the question you’re asking is not so much “did it work” but more “what did it do”? You’ve seen from previous posts how Carol’s condition progressed through that period, at an almost unstoppable rate. Carol could still walk when we first started to visit Phil and was a long way from that by the time September 2010 came around. As I said it wasn’t about a cure, it was reaching out for something…..just something.

What I do know for a fact is this – every time Carol had treatment she felt better, it’s really as simple as that. For a period of time following each visit Carol felt stronger – now did that help to slow down the progression at all? Would Carol’s progression over that period have been even more aggressive without that treatment? The truth is we’ll never know – so again it’s about taking the positives and there were many of them for Carol.

Kinesiology - During this period Phil also introduced us to what I can quite honestly say was the most bizarre treatment I’ve ever witnessed - Kinesiology. We met with John who was the practitioner and he explained what the treatment was about – if I say this “Kinesiology - a natural health care system using gentle muscle testing to evaluate many functions of the body in the structural, chemical, neurological, and biochemical realms” then you can see where we’re heading.

Carol had 2 separate treatments – in November 2009 and August 2010 – and they were the strangest treatment sessions I’ve ever seen. I could go into great detail but there’s simply too much to cover and there is no way I could explain it - so in short:

·         The first visit involved getting Carol “balanced”, using mineral placement on the body – charcoal in Carol’s case - and she was placed into an almost trance like state (almost like hypnosis). John used the involuntary movement of Carol’s arm to answer yes / no to questions he was asking about what Carol was feeling (up was yes / down was no). As I said, difficult to explain, and we ended up with Carol identifying feelings of abandonment by her Mother. Remember none of this was spoken by Carol, everything was done with yes / no answers from the movement of Carol’s arm. Whether these feelings were a subconscious memory of Margaret and the adoption, or real time thoughts on Annie’s faltering health, I just don’t know . There was even the sight of Carol’s body arguing with itself in response to a question about telling Annie that Carol had found Margaret – Carol’s head was shaking “no” but her arm was raised and immoveable as a “yes” – believe me when I say that I have absolutely no way to explain what I witnessed that day.

·       But that was nothing compared to the second session. Carol’s health had deteriorated by August and we’d also lost Annie but just try and explain this! John started as before with “balancing” Carol and the arm yes / no system. This time the questioning led Carol back 35,000 years (yes that’s 35,000 years!) to a memory of a small child left behind in a hut in Africa after being abandoned by her Mother and family. Carol said later that she could see and feel everything around her, and even smell things as if it was actually happening. Now before you ask me to try and explain that I have to say that once again I had absolutely no idea what was going on – I was baffled the first time and completely clueless the second. It was without a doubt the single most bizarre treatment I’ve ever witnessed.

So again we ask what did Carol get out of this treatment? To be honest I struggle to answer that one even today. Carol experienced something very personal during both of those sessions and that is still very difficult to put into words – you should have heard me trying to make sense of it when telling the story to the family!

So that’s just some brief information on a few different treatments Carol tried – mentally I feel they all helped Carol, physically there was only so much that could be done.    

July – August 2010 – Reaching A Plateau – More Shows / Trips – Possum System – Hand Splints

July started with a trip up to see the family and a party for Carol’s cousin in Blackpool. We’d been invited to Sarah’s 21^st a few months ago and I wasn’t sure about it but Carol had really wanted to go. In the end I was glad we went as it was great to see all the family, and the first time we’d been together with them since Annie’s funeral. Carol had progressed since they last saw her but that’s the beauty of families – it doesn’t matter – everybody was really pleased to see us and Carol was able to catch up with all the gossip.

We also had a change of venue for our stay as our very good friends Hils and David were kind enough to offer us a place to rest our heads at their new house in Appleton Thorn. We spent a couple of days with them and it was really good to catch up, and be shown the local sights(?!) - and I know Hils will always thank me for demonstrating my gardening skills and helping her clear that dreaded ivy off the wall of the house! No trip back home would be complete without a diversion around Birmingham and down into London – yes it was “JB” Sunday matinee again – still keeping count out there?

One major point to note about this two month period was a distinct slowdown in Carol’s progression. I’ve read a lot of different reports and stories about MND’s patterns and this was where we really started to see Carol’s progress change. After 5 months or so of rapid deterioration Carol had one of those plateaus where very little changed. Yes there were slight differences, in feeding / swallowing and hand strength, but nothing of any real note during this time. We suddenly felt good about how the next few months would look and actually booked a holiday for mid October – a cruise around the Canaries (a cruise - that’s another one of those things we could now cross off “the list”).

I do feel we did make one real mistake here though, and it was because Carol was feeling so good we delayed going to see the specialist about the PEG.  An appointment for Carol to be assessed did come through but we chose to wait until after the holiday. I would regret that decision later and it’s still probably the only thing I’d change when I look back on how we’ve dealt with all of Carol’s challenges – I wish we’d had the PEG fitted earlier.

Carol went back to Marie Therese House for an assessment with the physiotherapy team but there wasn’t anything new to discuss around the condition. However, we did talk to a different specialist that day and she suggested Carol should get a Possum system installed in the house. Possum is a system that allows you to control numerous devices from a central point using a remote control.

When the engineer came round he advised us what the system could do and recommended which household items Carol should programme in to control. There’s so much more that can be done with this system than we actually had set-up, but Carol’s limitations really set the boundaries. Carol was given a touch screen remote unit that could now control TV, DVD, Sky, lights in the lounge and even the front door (with an intercom and remote door release). The engineer even added the house telephone into the system, and there were pre-programmed statements added – things like “hello”, “how are you” and so on. Carol never used that part of the system as I don’t think she wanted to risk getting into telephone conversations with anyone outside of the family. I must admit that Possum is an excellent system and it would work really well for Carol for a number of months to come.

The other appointment Carol had in August was with the specialist “splint” team at Treliske. They had been asked to look at Carol’s hands and fingers to see if they could create a bespoke splint for comfort. Carol had a number of the Velcro wrist guard type supports but wanted something that would specifically hold her fingers in place (they were starting to curl under into the palm of her hand). They did a great job and Carol left with a strange moulded resin / plastic kind of fingerless glove. The physio said it was something similar to a splint he’d made before, but he changed the design a little on Carol’s, and watching him create it was very interesting. Carol would get the other hand done a couple of weeks later.  

We finished August with a flurry – as another treat for our 20^th wedding anniversary that was coming up on 31^st (to go with the cruise). We booked 4 days in London over the bank holiday weekend and tickets for 4 shows. We also changed the hotel this time, as I knew getting around on the tube with the powered wheelchair wouldn’t be easy. We moved to the Holiday Inn near Regents Park – just a 5 minute walk from Oxford Street – and that would serve us well for getting around (and Carol really enjoyed the scrambled egg for breakfast!).

We saw shows on each of the 4 days and had a great time wandering around London - or even just sitting and watching crappy TV together in the hotel room – it was a really good weekend and Carol was on great form. I was even refusing to get too stressed about all those people walking into the wheelchair because Carol was suddenly invisible again.

The weekend started with “Jersey Boys” Friday night (no surprise there) and then on Saturday we saw “Priscilla - Queen of the Desert”. I’m not 100% certain but I may have been the only straight man in the whole theatre – but it’s a fun show and worth a visit just for the sights in the audience! You can probably guess what Sunday matinee was – yes it’s “JB” again – I’m making no excuses I did warn you that we love this show. The only slight disappointment came on Monday night, we went to see “Sister Act” again. Now I only booked these tickets because the date was during the scheduled run where Whoopi Goldberg was playing the Mother Superior character. Whoopi Goldberg – Sister Act – London Palladium - you’ve just got to go and see that haven’t you? Unfortunately over that weekend Whoopi’s mother had passed away back in the States so when we got to the theatre we were advised that she wouldn’t be appearing. As I said a slight disappointment but we still enjoyed the show and had a good night.

So it was a quiet 20^th wedding anniversary after that busy weekend and we were looking forward to our cruise with Carol in good spirits.