CAROL ANNE GORMLEY - 23/12/1964 - 29/12/2011

Carol passed away last night at 7.30pm.


There's so much to say, so much to process - but right now all I feel is incredible pain.


We've been waiting for this day to arrive - putting everything in place - and you think you're ready - but you're not.


The end was very peaceful, Carol just couldn't fight anymore and it was time for her to let go - I'm sure we'll see the good in that at some point - but right now all I can see is an empty space where Carol should be.


My beautiful lady - my soulmate and the love of my life.

The bravest person I've ever known - so incredibly brave.

December 2011 – Scared – Carol’s Birthday & Still Sorting Stuff Out!

This month has had challenges on a couple of fronts for Carol - we’ve been dealing with:

1)      The laptop is currently gathering dust as Carol can no longer use the headswitch comfortably, so she hasn’t been keeping in touch with everybody. We’ve been looking at options with Carrie from the Speech Therapy team and she arranged for Carol to have an assessment for the Tobii PCEye – that’s the device I’ve previously mentioned that costs a fortune! The assessment was a real success, and it’s a very impressive piece of kit which would suit Carol’s needs perfectly – we’ve just got to hope that funding can be sourced from somewhere – Carrie’s on the case and fingers are crossed. 

2)      Carol’s sleeping has actually got worse this month – something I didn’t think was possible! This arose from the heart palpitations problem and the introduction of the new medication to stop them happening. Although we got the palpitations pretty much under control the side effects from the meds caused other things to happen. Carol experienced problems with a dry mouth (typical after all the trials of 2009/10!) and this was keeping her awake so I had to use the artificial saliva spray to counter this. Despite the sedative properties of both of the new meds Carol continued to baffle medical science by lying awake most of the night! The recent challenges of trying to get Carol comfortable in bed have also impacted on sleep and we’ve now resorted to a V-shaped pillow to try and give Carol the required neck / head support. I do need to thank Amy and Dr Anderson for all their help this month – we’ve had a number of conversations trying to find solutions and we’re now on the 4^th different permutation of meds / doses. Too early to say if we’ve cracked it yet but Carol is now on a stronger sedative at night to help her sleep – I’ll keep you posted.

My parents have come down to stay with us for 3 weeks – it’s always good to see them and even more so at this time of year. There’s the good feeling in the house that they always bring and Carol has more company – so she’s not just stuck with me!! These visits also give Mum and Dad the chance to catch up with the kids, and now of course their Great Granddaughter – they’ve not been down since August and baby has changed a lot since then. They’ll be here right through New Year so it’ll be nice to spend time with them – especially as I’m off work myself for the Xmas break.              

18^th December - Carol told me she was scared today – scared of how her body feels inside and of the things that are happening to her every day. What’s the correct response to that when I’m terrified myself? We no longer have many answers and “it’s going to be ok” doesn’t work anymore. Being the organiser I’ve been able to get things done for Carol and keep everything under control so far, but as we reach this stage of progression our ability to keep ahead and find solutions is diminishing.

23^rd December –Carol’s birthday - I‘m wishing my beautiful lady a very happy 47^th birthday today – and judging by the numbers of cards, presents and flowers so are plenty of others! Despite all that’s going on there are still things that need to be celebrated and today is most definitely one of those. Great to have some of the family around and there are also lots of messages on Carol’s Facebook page – my lady is loved by many people and that’s something to cherish.

So Xmas is upon us again – not a time to dwell on the negatives, we’ve got through another year and for me that’s a real bonus. This has always been Carol’s favourite time of year so let’s all enjoy ourselves and be thankful for what we have. There won’t be any New Year’s resolutions – let’s just keep going and see where life takes us from here.

More From Me - Caring And Some Painfully Honest Thoughts......

Bearing my soul and being brutally honest about a subject as personal and painful as this one is pushing me well away from my comfort zone.  Caring for Carol is the hardest thing I’ve ever had to do – nothing can prepare you for having to watch the person you love being overtaken by a disease that cannot be beaten. Let’s face it, finding a soulmate in our lifetime is hard enough – sitting and watching as that person is slowly taken away, well there are just no words to describe what that’s like.

There’s no instruction book or training manual to read when you’re a carer – it’s something you just do, making it up as you go along and learning from the mistakes you will most certainly make. You can find lots of advice around, and plenty of support if you’re lucky, but it’s a situation that’s unique to you so your days will not be like anybody else’s.

I’ve thought long and hard about whether I should even write this next thing down but this blog only works if I’m honest – it will only help somebody reading this to understand if I’m honest. The thoughts that go around your head can’t be controlled in this situation – however you would like them to be. The worst one of all is when you allow yourself to think that you want everything to be over. Let me be perfectly clear – I’m not sat here wishing that Carol would die, in fact I’m selfishly wanting to hold onto every single day. But that thought is actually about not wanting Carol to suffer anymore, not wanting this disease to take anything else away from Carol. I know how hard all of this has been for Carol and just can’t stop myself from thinking at times that she’s been through enough. I’ve said before that life can be cruel – and I mean that it’s cruel on all of us. How bad do I feel for even letting that thought enter my head? How can I even contemplate such a thing? I don’t have the answers but it’s a constant battle between wanting to keep Carol here with us while this disease eats away at her every day (selfish?) and wanting Carol to be released and free of it all (also selfish?) – and behind it all knowing the depth of the loss we’ll all feel when that does actually happen.

I wrote something a couple of weeks ago on the MNDA Forum, in response to a lady questioning how a carer should feel and whether it was right to not want to carry on. My reply was instinctive, typed quickly and without any real planning, but when I read it back I realised I’d written a very honest subconscious thought that I’d actually never said out loud before. I wrote this: 

“Speaking as someone who's been caring since my wife was diagnosed in 2009, and dealing with all that needs to be done, I can honestly say that…should not feel bad for having those thoughts. I doubt there's a carer out there who hasn't hit the wall at one time or another - we're all human and we're all going through something traumatic. Everybody develops their own coping mechanisms but having the right support around certainly helps to pull you through. Those thoughts come from the circumstances we have all found ourselves in - they're not aimed at the people we love and care for. Carol gets frustrated with me as well - but it's what the disease has done to our lives that brings those feelings out - not the way we feel about each other.”

It’s the last part that really hits home for me – the person I’ve become is not someone I ever expected to be. There are times when I dislike this person – those times when my frustrations boil over and I get snappy. Don’t get me wrong – I would never do anything that would hurt Carol or endanger her care in any way, but there are times when doors get slammed and I’m generally grumpy because it’s taken me half an hour to get Carol comfortable in bed – pillows in particular are a nightmare these days. Then after the tantrum I feel terrible because I know none of this is Carol’s fault and I shouldn’t let her see those reactions. As I said above it’s the disease that’s doing this to us and there are times when I hate it.

As far as being a carer goes our days are all about planning and routine – this has changed regularly over the last 2 and a half years, in response to Carol’s condition, but they’re pretty stable at the moment. I get things organised the night before, next day’s clothes and morning meds etc. This gives me a headstart in the mornings, as I’m getting myself ready for work and setting Carol up for the healthcare ladies visits each day. As I’ve already said Samm looks after Carol during the week, and Kyle’s around as well, but most days I’m talking to someone in Carol’s support team. Whether it’s meds or care or general questions there’s usually something that needs to be discussed.

I come home from work each night and get straight into whatever jobs need to be done. Evenings are about keeping Carol settled – watching something on TV (currently working our way through the entire series of ER on Sky Atlantic). Feed needs sorting, flushes and meds go in at set times and then it’s all about bedtime – not forgetting any toileting that needs doing as well (Carol likes to save that just for me!!) then preparing for the next day again – and on it goes.

At the weekend I rarely leave Carol’s side – something always needs doing and the healthcare ladies only visit twice so there’s more to cover during the day. We’ve developed a routine that works and on these quieter days Carol tries to sleep during the afternoon – with varying degrees of success.

Sleeping is an issue I’ve mentioned many times already – Carol really struggles to sleep and, as I’m next to her on a mattress on the bedroom floor so do I! It’s been like this for over a year now and I can’t remember the last good night’s sleep I (or Carol) had. Keeping Carol settled through the night involves having to change her position, give meds if required, sort covers out and so on – and being woken to do this 4 or 5 times each night is normal. Those frustrations I mentioned earlier often rear up around 3am, when we’re awake for the 4^th time struggling to function and the pillows won’t behave!

You just can’t switch off as a carer – getting Carol into bed means I can then think about the jobs around the house – and you all know they never go away. But all that keeps me busy – and busy works well for me.

Some Thoughts From Me………

I’m 44 years old and have been with Carol since I was 19 – so I don’t know anything else. The future is quite scary when you look at it like that.

You see it’s always been simple for me – someone says “tell me about yourself” and it starts with “married to Carol, dad to James, Kyle and Rebecca”…….and on it goes. The most important things in your life always come out first – well they should.

Looking at the future without Carol in it – sometimes I wonder how I can even do that while she’s right here battling with this disease, but the mind is a curious thing and thoughts like that just happen. The life we should be living at this point in time has already gone, remember this is our parallel existence, so what comes next?

Emotion is something I try very hard to control, but let’s be honest – my heart breaks every day. It’s not something anybody can see – I make sure of that - but inside I have to wake up each morning, put on that brave front and get things organised for another day. That’s why I try to keep myself busy all the time – because it’s the downtime that catches you out. Sitting doing nothing is when the brain is relaxed – that’s when you start feeling sorry for yourself – and that isn’t something I’ll allow myself to do. 

I would hope that you’ve picked up quite a few things about who I am from the previous posts - it’s not something I’ve thought about really – I don’t have that kind of ego.

In many ways I’ve always been the opposite of Carol so I’m not the sociable one, as you’ve probably gathered – not comfortable in those situations and any chance of having friends has certainly disappeared since I wrote that earlier post!! Being in a room full of strangers is my idea of hell – small talk is something I just can’t do. I’ve never been interested enough to find things out and don’t think I’m interesting enough for others to want to know about me – and yet here I am opening up just like that – who’d have thought it.

Writing about my perspective doesn’t sit comfortably with me either – it all sounds so selfish. I should be concentrating on Carol and her needs, telling others what she has had to go through and how incredibly inspiring she is. Talking about how that’s affected me doesn’t come easily.

When I say things like “Carol is going through this illness and my life has changed to fit around her needs” it sounds really selfish – of course my life should change to make sure Carol gets everything. But the point I’m trying to get across is that there is no “normal” for us anymore. “Life” has gone into a kind of limbo, because the complete focus is on Carol’s daily needs – but we’ve always been in this together so there was never going to be another option.

Here’s an example of what I’m trying to say. My one real vice is Springsteen – I’ve been fortunate to be able to see 27 shows since 1988 and have taken Carol and the kids with me to see the various tours. Tickets have just gone on sale for next Summer – over here there are 4 UK shows and 2 in Dublin. Now in our previous life I’d have booked tickets for 5 of those shows without even thinking about it, with hotels etc, and all would have been well with the world. In this life I’ve booked for just 2 – the venues that are easiest for me to get straight to and back – and I’m already thinking I may not even get there when the shows come around. You see everything will depend on how Carol is at the time and whether or not I can ensure her care is covered on those 2 specific days. I appreciate that may not be a great example but what I’m trying to say is the things that used to be taken for granted are now regularly out of reach – and that just has to be how it is.

I’m going to stop using the word selfish just as long as you can understand that’s how I feel a lot of the time, with things I think about and don’t necessarily say out loud, and with how most of this looks when it’s written down.

Touching briefly on work - this has provided a distraction for me. I have continued to work full-time throughout everything you’ve read so far – we both agreed I’d do that right from the start – unfortunately we also need the money so what else can you do.

I was completely open with my employer right from Carol’s diagnosis and thankfully they’ve been supportive of everything we’ve needed to do. I’ve worked from home at times and changed my hours to cover all of the appointments and general daily “stuff” that has had to be dealt with.

Because of this Carol obviously has to have support during the day, in addition to the healthcare / nursing visits. I’m very grateful that Samm now does this (with baby) and helps to keep a smile on Carol’s face. Kyle will step in whenever he’s needed and Bec has also helped to cover. This allows me to relax – a little at least – knowing Carol is being taken care of during the weekdays.

I do a good job for my employer, leading a team that’s spread across West Cornwall, and have developed the ability to focus on the work in hand every day - despite always thinking about what’s happening with Carol. It’s not about trying to shut home life off – that can’t be done - it’s just about being able to visualise each day and take everything one step at a time.

Because don’t forget there’s a much more important full-time job waiting for me at home - and I'll write about that next.   

Quick Update – MNDA Survey…….”Assisted Suicide”?

Just to update now that the new meds have had time to get into Carol’s system – yes they do appear to be working. Always wary of speaking too soon, just over one week, but there have been no further palpitations so far. One of the meds is a replacement so I’ve weaned Carol off an existing med and onto the new one. Unfortunately there hasn’t been a marked change in Carol’s sleep pattern, it’s still patchy at best, but let’s keep our fingers crossed. What we have seen is a build up of saliva since these meds started – may just be a coincidence but Carol requested an increase in the syringe driver dosage to try and counter this – and then a couple of days later asked for it to be dropped again! We’ll monitor to see whether there are any changes over the next week or so.

We’ve just completed a survey from the MNDA. The carer’s one is pretty straightforward and I’ll talk about this later but the one for Carol was mainly around end of life choices – we had to answer simple questions on Carol’s personal instructions (Advanced Directive etc) but there are others like:

1)      “The MND Association is very keen to know what their members think about assisted suicide.  What are your views?”

2)      “Are there any circumstances in which you would consider this for yourself?”

Now this is a very emotive subject – which is probably why our views, and those in a similar position to us, are interesting to the MNDA study. I remember listening to a Jeremy Vine phone-in a few months ago about Dignitas – the Swiss clinic – and getting all wound up over some of the callers and comments. As I’ve said before everybody is entitled to an opinion – but I get annoyed when people who have never been in the position to even have to think such thoughts get all high and mighty about those who are actually having to live that life – or not living life (which is the whole point really isn’t it). Then to add insult to injury some of them try and bring religion into the discussion and the whole thing disintegrates into farce.

Now before I upset anyone with my opinion please be assured that we have absolutely no intention of even considering this route – it’s just not in Carol’s nature despite facing the uncertainty of the future – so don’t panic!  I’d also like to say that this wasn’t a subject we discussed much before Carol became ill. But I do know for certain that I have never looked at any of those stories on the news and objected to what those people were doing – I wasn’t living their lives so how could I understand what they were going through.

The answer to question 2 has been touched upon in an earlier post – Carol and I always agreed that the only time we’d ever consider such action would be if machines were the only thing keeping us alive – that’s not any kind of quality of life – it’s not living so we wouldn’t want it.

Question 1 is a very personal choice, but again both Carol and I share the same viewpoint. Until you are living with something like we are every single day then I’m sorry but you cannot understand what it’s like. You may think you can empathise with the situation but unless you are also trapped inside a previously healthy body that now doesn’t work how can you tell me you understand? I’m living with Carol, and have experienced every single day of this disease – but do I / can I really understand how Carol feels? The answer is probably not as much as I’d like to think I do.

What I’m trying to say is that nobody but the individual themselves can really understand and therefore they should be allowed to control their own journey – while the rest of us must accept their decisions. Unfortunately that’s impossible because “suicide” is illegal – and that’s the bit that gets me annoyed.

I’m afraid that what I object to is the word “suicide” in circumstances where the individual is diagnosed with an incurable / terminal illness. If you are facing a certain death, and in many cases a painful, confusing, undignified death, then the medical profession should be able to do something about that in line with your wishes – without any comeback.

Now don’t get me wrong – if you take your own life when you’re “healthy” that’s worthy of challenge – but then the argument over what constitutes “healthy” begins and nobody gets anywhere – which is the whole problem!

To probably oversimplify the point – over the last 2 years we’ve lost both of our families pet dogs. Holly had cancer and Meg had diabetes that caused complications – in both cases they faced the prospect of living with severe pain so we put them to sleep. Why did we do that? Because it was the “humane” thing to do – and we’d probably have been accused of causing unnecessary suffering if we hadn’t made that decision.

So the question is – why is it not “humane” to do that to “humans” – why do we not have the right to make that decision for ourselves when the person facing that life of pain is us?  Again it’s because the law classes any such action as “suicide” - and that’s just not allowed.

Now those high and mighty people will come back and say that dogs can’t make the decision for themselves so we’re doing the right thing by them when we take action – well I say what difference does that make? It seems that we have absolute control over such decisions in our lives as where we want to live, who we want to live with, what job we want to do, where we want to go on holiday, how we want to spend our money etc, etc – but we are not entitled to make the decision about ending our own suffering irrespective of what kind of existence that leaves us facing - sorry but for me that’s just not right.

Stopping before I go any further with this rant I repeat that Carol has no intention of choosing this option – the future will be faced with a smile and each new day brings the chance to spend time with the family.

But the question is, if there’s someone out there in similar circumstances who does want to choose this option would they be wrong? And how could we really understand?     

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.