Sunday, 19 October 2014

Taking A Break From Tysabri!

Over the past few months I have been thinking a lot about my Tysabri treatment. 
I started on the infusions on 30th June 2009 so I've been on it now for over five years, I've had around 65 infusions and to be perfectly honest that scares me........a lot! 
I know that I am monitored but that seems to vary depending on where in the country you are having the treatment, some are monitored a lot more than others and when one of the downsides of Tysabri is developing a potentially fatal brain infection called progressive multifocal leukoencephalopathy or PML, I actually don't think you can be monitored too closely! 
When Martin and I took the decision for me to start the infusions (and it was a joint decision) we didn't take it lightly. There had been known fatalities from people developing PML as a result of being on Tysabri infusions, none in the UK though which was promising! We had to weigh up the possible benefits with the possible downsides, as with any treatment you start, but this definitely felt like a heavier decision. The risks seemed to have jumped up in their seriousness and it wasn't a decision that we were going to rush in to. Having said that, there was a fair amount of reading material to look at and, of course, with the internet, there was endless information to be found. It seemed to be the drug that consultants were choosing, at that stage, and taking PML into account, it did appear that if you were on the infusions, you were going to be monitored and you were told what to look out for etc.
So after some thoughtful discussions, we decided that it was worth a try. In 2009 it looked as though three years was the maximum that people were on it for. I can't remember though whether that was the longest people had been on it or the longest you should be on it for. 

The idea behind Tysabri - tysabri.com - is that it is designed to slow down the progression of the MS in people with relapsing MS, it can cut down the amount of relapses someone has. It is given as an IV infusion once every four weeks. There is an increased risk of developing PML but they now know that the risk is higher if you have been exposed to the JC virus so they are able to do a blood test to check this for you. When I had my blood test done a couple of years ago I was negative for the virus but you should be tested regularly because the result can change. I know of people who tested negative for a handful of tests but then tested positive. If you test positive it doesn't mean you can't continue with Tysabri, it just means that the risk of developing PML is greater so you should talk it through with your consultant to see if that risk is worth taking. 

When I started my Tysabri infusions the first hurdle that I had to get over was being canulated. My veins, even at that time, were not good, but my main problem was pain. To stick a needle in my skin is like sticking a red hot poker in it. My skin is so hyper sensitive that the pain is horrendous. I'd had problems being canulated in the past but I hadn't needed it on a regular basis like I was going to be now. 
The infusion was every four weeks and the idea of going through this trauma on a regular basis did not fill me with joy. And it was horrible for the nurses too. They don't like inflicting pain on their patients really! 
There was a nurse on the unit I was at who I had originally met in 2002 when I first went there for all my diagnostic tests. She had held my hand throughout my first lumbar puncture and we hadn't forgotten each other! She was also the nurse that is a wizz at canulating people, especially those with difficult veins and whenever she was there she was the nurse that would canulate me but even for her it was a real struggle. 
It was because of all this that I ended up having a portacath (or TIVAD) implanted in my chest. It is a little device that they put into my chest. It has a tube that is connected to the main arterial vein in my neck and then I was sewn up and this device sits just under the skin. When I have my infusion the nurse has a needle with a tube attached to it, the needle is put into the device in my chest which is connected to the vein, the tube is hooked up to the saline bag with the Tysabri in it and the infusion goes directly into the vein through the needle. I still have magic cream put on before the needle goes in, because I am the ultimate baby.......and it still b****y hurts, but on the whole it is a much more satisfactory way of me receiving my infusion and that is how I have had it done ever since! The device itself can stay in my chest for life....as long as there are no problems with it like infection. 
When it was first put in I was quite self conscious. I would wear tops that covered it but it didn't take long for me to forget that it was there! The funniest thing is when I show people that it's there and I get them to touch it, you can feel the device just under my skin and it tends to freak people out! ;-) 

Once I'd had the portacath fitted the infusions were a lot less stressful for me. The only issue I had then was that there were only a couple of nurses trained to use it. It is a little more complicated than a normal canulation so the nurses have to be trained and signed off on using the portacath. At the time I had mine fitted I was the only patient that was regularly on the unit that had one, so there was no one for anyone to practice on! I know that sounds bad but nurses need real people to hone their skills! By the time I had my latest infusion there were about half a dozen nurses that could use it though and I believe that there was one other patient with one fitted too! 

I cannot believe that I have been on Tysabri for over five years, that is incredible! But because I have been on it for so long it has got me thinking about it a lot over the past six months or so. There isn't a lot of information about the consequences of being on this treatment for a prolonged period of time and that bothers me slightly. So I wrote down my concerns and questions I had regarding whether I should take a break from the infusions and I emailed my consultant with those questions and fears. I know of friends who are on Tysabri and they know when they are ready for their next infusion. They know when the four weeks is coming to an end and they are due the treatment again because it affects them in such a way that they feel it but I have never experienced that. In fact in 2012 I virtually missed an infusion because of a holiday, I went for seven weeks in between infusions but I didn't feel any different. That has always been in the back of my mind and has made me wonder whether this drug is actually doing anything for me? I will say though that my MRI scans have been reasonably stable in the time I've been on the infusions, my consultant has always been happy with me being on it and I trust him wholeheartedly. 
I've just begun to question whether this is right for me though. It's one of those scenarios where I wish I had a clone so we could see how I would be now if I hadn't started on Tysabri at all....but there is no clone so we have to deal in the facts that we have now! 
I suggested to my consultant about having a break from my infusions for a number of reasons. 
1) I've been on it for over five years and we don't know the consequences of that. 
2) I don't feel any different from one infusion to the next so is there a chance that it's not doing anything for me? 
3) Immediately after the infusion it wipes me out, I have to write off the following two or three days because of how it makes me feel and I'm getting fed up of that now. 
4) If I have a break how long should it be for, should I start with three months and see how I'm doing after that? 
5) I know that I will be at risk of having a relapse if I stop this treatment but do you know how big that risk is? 
6) If I do have a relapse will I be able to go back to having Tysabri infusions? 
7) In a warped kind of way if I do have a relapse I will know that the Tysabri has been helping but if I don't have a relapse is it reasonable to assume that the infusions weren't helping me and so do I stop it altogether? 

As you can see I really have been giving this a lot of thought lately! 
My consultant was very good though and he answered a lot of my questions with the information that he has.
He agrees that a break could be a good idea, for the reasons I have stated. He has also said that yes I would be at risk of having a relapse but it is all hyperthetical, there is no way of knowing whether I will relapse or not or how bad the relapse would be if it did happen. Yes I can go back to having the treatment if I need too, I would just need an MRI to confirm a relapse. If I decide to go ahead with a break, his advice would be to go for six months to start with because it can take up to three months for the existing Tysabri to leave my body.
We recently had an appointment with our GP and we talked about the possibility of taking a break. I told her my reasons for wanting to do it and what my concerns were too, she felt that I was approaching it in exactly the right way and that providing I got answers from my consultant, she thought it was a good plan!

So here we are faced with another decision to make about my treatment! 
I know we have come a long way in giving the patient the right to make decisions about their own treatment and having been dealt the hand I have, I do appreciate that and I think it is a positive thing......but.......sometimes I wish the doctors would just make the decisions for me!
As with most things we do, Martin and I talked about it and came to a joint decision and I am going to take a break from the Tysabri. 
It does feel like a big thing that we are doing and there is no way of knowing whether it is the right thing or not but time will tell.
I had my last infusion on 28th August 2014 and because we had been on holiday I was a couple of weeks overdue for my treatment anyway so I haven't had that next one and my six month break is underway! I am obviously in contact with my consultant and our GP and I will be keeping them informed with anything that happens so I do feel that I am being supported, medically, with this break......so here goes! ;-) 

XxXxX


Sunday, 12 October 2014

Navigating the Avon Ring! :-)

When I was growing up, my mum and dad took me, my brother and sister on holiday, not abroad or anything fancy like that but on a narrowboat on any of the miles and miles of canals that exist in the UK! We loved it! And we all have memories of or we know the stories of my sister falling in the canal and losing her wellies! 
It was always a magical time, sleeping on a boat and the adventures we had on them. I have some really vivid memories, I remember us being on a boat over an Easter holiday and having chocolate Easter eggs given to us while we were there. I also remember being quite young and we went on the Llangollen canal. It has the tallest aqueduct and I remember being so terrified that I hid in the boat the whole way across. I wouldn't go up on deck or get off and walk over, I just couldn't face it! So it was full circle in 2009 when Martin (my husband) myself and my dad did the Llangollen canal again many many years later and I drove the boat over the aqueduct! It was very satisfying! 
Another memory I have is of the locks......I was terrified of them as a child! You would either disappear down into a deep, dark, wet hole if you were locking down the canal or you would drive into the empty lock and wait for the water to rise bringing you up to the daylight of a full lock if you were locking up the canal! I never understood them as a child, I don't think I even realised what they were for, but now I love them! It is such a feat of engineering, so impressive and of course I understand their purpose now and I know how to operate them even if I can't physically do it myself anymore......my job is to drive the boat into and out of the locks! ;-) 
Canals hold a very special place in mine and Martin's hearts too. Martin had never done a narrowboat holiday until 1996. My mum and dad were going on the Kennet and Avon canal and they wanted to know if we'd like to join them. The beauty is you hire the boat, you don't pay for how many people are on it so we shared the cost! It was on that holiday that Martin and I had our first anniversary of being together as a couple and to celebrate that Martin proposed to me on that night! It was wonderful and something we've never forgotten.  
Canals also played a part in 1998, when we got married as we had our honeymoon doing the Warwickshire ring around the Midlands! 
Martin had fallen hook line and sinker for the magic of canal boating and has never needed much persuading to go on them but we hadn't been in a position to go on any canal boat holidays after that, especially after I was diagnosed with MS. We weren't sure whether we would do them again one, as they have become ever more expensive as they have become more popular and two, because of my disability. But in 2009 my Dad and I started talking about how nice it would be to go on a canal holiday again. Martin was all for it too so we booked to go for a week on the Llangollen canal. It was one I had only done as a child and Dad hadn't done it since that trip all those years ago. I had wanted to drive the boat over the Aqueduct and to show it to Martin too. 
Sadly we'd lost my mum in March 2008 and so Dad wasn't able to hire a boat alone. Plus, I was disabled with MS by then so Martin and I couldn't hire a boat with just the two of us as you have to have at least two able bodied adults on board your boat, to do the boat handling and also to work the locks! I can't work the locks anymore and I can't jump ashore safely either but I can drive the boat, so that is my job! Dad and Martin work the locks between them while I drive the boat through each lock....it works really well! 
So in 2009 we did the Llangollen canal and in 2010 we did the Shropshire Union canal up to Ellesmere Port and back. We didn't do one in 2011 because we were building up to going away for six weeks in 2012 and incorporating the Caledonian Canal in Scotland. Then last year we did the Monmouthshire and Brecon canal (Mon and Brec) in South Wales. 
All this time my dad was still working, he was a captain in the Merchant Navy and I hear you all saying what a bus man's holiday, but I can assure you it is completely different, being on the canal is so relaxing.......you can only do a top speed of 4mph! ;-)  
Well on 17th of this month Dad will be 74 and he finished his last trip at sea on September 3rd.......he has now retired! :-) We knew that he was looking at doing this now so we decided we wanted to do a decent holiday as a kind of celebration and we chose to do the Avon Ring. We have started in Stoke Prior on the Worcester Birmingham canal. We are going on the Droitwich canal, the Rivers Severn and Avon, the Stratford upon Avon canal and back on to the Worcester Birmingham canal again. We do a complete circle......well figuratively speaking anyway and this will take us two weeks! 

SATURDAY 13th SEPTEMBER 2014
We collected the boat on Saturday afternoon of the 13th September. You have to do a handover and sign all the official bits of paper that they ask you to, even if you are experienced, like us, they will show you over the boat etc. If it is your first time on a narrowboat, then the company you hire your boat from will not let you leave until you are happy with everything and understand to use the boat and the principle of working the locks.
We left Stoke Prior, where we got the boat from, around 4pm and we wanted to try and get down to the junction of the newly renovated Droitwich canal to stop there for our first night. We got there around 6pm which wasn't too bad! We were all absolutely shattered though as it had been a long day that had started early for us all! 
Conveniently we had stopped right next to a pub.....The Eagle and Sun at Droitwich, so we had dinner there and an early....ish night! 
Going away with my Dad almost certainly means early mornings! He is so used to getting up at 6am for his job that he finds it difficult to switch it off when he's at home.......it's a habit he wants to break now he has retired!! 
But while we are on a canal boat, getting up early works, because you can only work in daylight hours. So we get up early but then go to bed early too, which suits me fine! 

  Our boat......"Siobhan" from Black Prince Narrowboats! :-)



SUNDAY 14th SEPTEMBER 2014
On our second day we left the Worcester Birmingham canal and turned right onto the Droitwich canal. Straight away there were three locks to do. They were single locks too which means that only one boat can use the lock at a time. That day we did seven locks in total between the beginning of the Droitwich canal and getting to Droitwich town centre. We moored up at the marina for the night and spent the afternoon having a wander around the town working out which Chinese we'd use later on that evening! It worked out just right for us and it was a lovely Chinese too!





MONDAY 15th SEPTEMBER 2014 
On Monday morning we left Droitwich early as we needed time to get down through the rest of Droitwich canal, out onto the River Severn and down to Worcester where we were staying for the night. There were seven locks including Bevere lock on the River Severn which is operated by a lock keeper! 
Martin and I hadn't been on the River Severn before, in fact we hadn't done a River before and I found that a little scary........The River Severn is huge, especially in comparison to the canals! Plus the rivers have a current, which worried me because I thought that we'd have less control of the boat but I needn't have worried as it has all been very manageable! 
The River Severn is huge! It's very wide, especially when you compare it to fairly narrow canals....But it is still very beautiful! :-)
                       
                       Bevere Lock on the River Severn



River Severn


We arrived in Worcester by about 3.30pm and got tied up on the river. Because the river has a current running through it, Dad turned the boat around and we tied up facing back the way we'd come which also meant that we were going against the current. That's what you do on a river......apparently! Dad and Martin left me to nap on the boat while they went and investigated Worcester. They came back with some lovely fresh bread and some other bits and pieces and we decided that they would take me into town in the morning before we left as there was a nice little shopping precinct that I'd probably like. I'd go in my wheelchair though as it was too far to walk. 
We had some dinner on the boat tonight, I'd made a large pot of stew a while ago and frozen it in Dads freezer so we brought it with us and let it defrost over a couple of days. We had that with some fresh bread for dinner tonight which went down a treat! ;-)

                       Worcester








TUESDAY 16th SEPTEMBER 2014
On Tuesday, after we'd been into Worcester to stock up on supplies, we headed on down the River Severn. We had another large lock to do but again it was operated by a lock keeper. This one was Diglis lock which is where the Worcester Birmingham canal comes down to and joins the River. 

Diglis Lock on the River Severn












If we hadn't done the Droitwich canal we'd have come down on the Worcester Birmingham but doing the Droitwich was a new one for us all, which was good. 
We made our way down the River Severn, going with the current, which made things a little easier for us. As we are doing a ring, there are obviously two ways you can go, clockwise or anti-clockwise. The information from the boatyard was suggesting that people go in a clockwise direction but all the way along dad had been saying that, if we could, he wanted to go anti-clockwise. Not to be awkward, he did have logic to back this up! ;-) Going his way round meant that you were with the current on the River Severn, which can be quite anti-social at times. That River is also much the same, the banks are built up quite high so there isn't much to see, once you've seen a bit of it, you have really seen it all! And then there is the big flight of locks, the Tardebigge flight, and going this way around means, when we get to them, we will be locking downhill rather than uphill and going downhill always seems quicker! 
We got down to the junction with the River Avon where we had to turn left off the River Severn, our experience on the River Severn was a perfectly pleasant one and we certainly had nothing to worry about as far as navigating it was concerned! 
Coming off the Severn and getting on to the Avon meant going through the Avon lock. This one was a fraction of the size of the two we'd gone through on the Severn but it is also manned by a lock keeper. This gentleman was an absolute star too. Dad had phoned him the previous day to inform him we were coming and to see if there was any way to secure a place to moor as there was a disabled person on board so if possible we required wheelchair access. Because dad had made that courtesy call, the lock keeper had reserved a special place for us, it was right next to the lock and had a decent ramp next to the towpath which enabled me to go with the other two into Tewkesbury, which is the town we were in that night! 
The River Avon is managed and looked after by The Avon Navigation Trust (ANT) which is totally different from the canals and River Severn which are maintained by the Canal and River Trust (Formally the British Waterways Board or BWB) so to travel on the River Avon you have to have a separate licence and that is purchased from the lock keeper at the Avon lock and a seven day licence costs £50. 

                       Tewkesbury






WEDNESDAY 17th SEPTEMBER 2014
The next day was Wednesday. We got up and decided that rather than popping back into Tewkesbury, that happened to have a market on that day, we would fill up with water at the water point by the lock and then get underway. We were heading to Pershore today so we are now going against the current, going up the River Avon and we will be going all the way up to Stratford upon Avon where we will join the Stratford upon Avon canal. We are looking at being in Stratford by Saturday because we will have lots of locks to do once we get back on the canal! 
The locks on the River Avon, apart from that first lock, are all unmanned so we were back to doing them ourselves! They are generally bigger than canal locks but nowhere near as big as the River Severn locks had been and the ANT ask that whichever gate or gates you leave the lock by you leave those open which generally saves you a bit of time! 
We arrived in Pershore and tied up next to a park. This particular piece of the Avon is so pretty, a real beauty spot! I see what Dad meant about the Severn being boring compared to the Avon and canals. The Avon is so much more open and you can see for miles around you! Don't get me wrong, the Severn is lovely in its own way but the Avon is really pretty. Once we had tied up in Pershore we knew there was an Asda supermarket just 5 minutes from the canal and our stocks of beer and cider were very low and needed replenishing! We did a shop and popped the shopping back to the boat and then we went into Pershore to find a pub or somewhere to have some dinner. It was Dads birthday today so Martin and I wanted to spoil him with a nice dinner somewhere. Unfortunately we've had to put that on hold for now as we couldn't find a decent pub anywhere without having to walk miles to get to one and as we had walked passed a Fish and Chip shop, we settled on that for the night! It was actually very nice and something different, just not what we had expected or wanted for that evening! We've given Dad an IOU for his birthday meal though! ;-) 



THURSDAY 18th SEPTEMBER 2014
We left Pershore on Thursday morning and were making our way towards Evesham today. It was a beautiful day with the weather today. In fact we hadn't had a bad day since we picked up the boat on Saturday........yet! It's probably the best weather we'd had, so far, on any of our canal trips over the last few years. 
The River Avon really does have some beautiful parts to it and of course everything looks better when the sun is shining! One of the differences between the rivers and canals is that the locks on the rivers are few and far between. There will be the odd one here and the odd one there, where as the canals have some stretches where there can be lots of locks together and we knew once we got back to canals with both the Stratford and the Worcester Birmingham that we were going to have certain stretches where there were going to be lots of locks together.
The stretch between Pershore and Evesham wasn't too far today so we stopped around lunch time and had some lunch. It's funny how normal habits go out of the window when you are on holiday especially when you are doing something so different as a canal holiday! Martin and I aren't great breakfast eaters but we nearly always have breakfast when we are away with Dad and Dad doesn't always have lunch but he will generally have it with us or we will have brunch depending on what we have been doing that morning! I guess when you are doing something physical like working a canal boat you earn your fuel......You certainly burn it off when you're working the locks etc (well Dad and Martin do anyway!) It's also funny because Martin and I aren't great drinkers of alcohol....don't get me wrong, we don't mind it every now and then but it doesn't feature heavily in our day to day lives......but when we are on a canal holiday, we both enjoy the odd drink or three! The whole principle of narrow boating is that you travel along the river or canal and you go from pub to pub! This isn't exactly what we do but we do enjoy a drink or two on board. Martin is never happier than moving along a canal, having a group of locks to do and enjoying a bottle of cider while he is doing it!! :-) 
We arrived in Evesham about 3pm. I hadn't realised how tired I had become but after we'd stopped it was decided that I should have a little nap. We had already sorted out dinner, Dad had bought a freshly cooked roast chicken at the market in Pershore first thing this morning and we decided that if we could get some sort of rice to go with it that would be fine for dinner tonight. So while I had my "nap" Dad popped up the road to the local Lidl and Martin was sorting out a few bits on the boat! 
When Dad got back from the shops, he'd found a launderette and so between them, Dad and Martin, got the washing together. I had brought with me some of the two in one gel capsules, because I knew we'd need to do some washing somewhere along the line, the trouble was neither of them knew where I'd put them! ;-) Apparently Martin woke me to ask me where they were, and I told him, but I don't remember it at all and I just went straight back to sleep! 
I didn't wake up again until 6.30pm that evening and I only got up because I was busting to go to the toilet......I couldn't believe it when I realised how long I'd been asleep! Dad had been to the shops and back, he'd had a shower and he was doing the laundry while I'd been snoring my head off, I felt so guilty but I must have needed it because I hadn't stirred and I certainly don't remember Martin asking me for the washing gel capsules! ;-) 
We had dinner on board tonight and then I went to bed early......even after my mammoth nap, but that's what all the fresh air and physical stuff will do to you, especially when you throw MS and fatigue into the mix!

    The beautiful River Avon :-)




FRIDAY 19th SEPTEMBER 2014
After saying how lucky we'd been with the weather......I will point out that I had said "so far" because over night the heavens had opened and we had torrential downpours! It was lucky that we had pushed on to Evesham yesterday because today was looking to be decidedly damp! We didn't want to do too much today but we did want to move up the River a little way if we could. 
We eventually moved around midday, it was still a little wet but only drizzling by the time we left our moorings at Evesham. I think what might have helped was that Dad and Martin both got suited up in their wet weather gear so, of course, as the afternoon went on the weather brightened up didn't it?! ;-)
We had looked at just moving up to Bidford on Avon this afternoon which wasn't far, only a couple of hours cruising and a couple of locks but when we got to Bidford, the weather was half decent and we all agreed that we'd push on a little further to give us a little bit of breathing space. 
When we had done our shopping at Asda in Pershore, we had made sure we had enough stuff for a couple of meals on board in case we needed it so we knew that we didn't need to be near a pub or take away as we had decided on spaghetti bolognese for tonight! 
We eventually stopped just after a lock that we had been through and we were on the outskirts of a place called Welford on Avon. We had pushed on just a little bit but that was good because all the time we were making up at this end would give us breathing space for doing the Lapworth flight of locks on the Stratford canal and the biggy, the Tardebigge flight on the Worcester Birmingham. The Lapworth flight is about twenty locks and the Tardebigge flight is thirty six locks! 
We threw together a spaghetti bolognese for dinner tonight, a request from Martin! Not long afterwards I had gone to bed.......exhausted! :-) 

SATURDAY 20th SEPTEMBER 2014
Saturday and we are already a week through our two week holiday......it never ceases to amaze me how quickly time goes when doing a canal boat holiday but we are incredibly lucky this year because we have two weeks on board. It is still going quickly but the saying "Time flies when you're having fun" springs to mind! ;-) 
We were up and on our way early today. We weren't too far from our next lock and there was a water point there too, which we definitely needed! We did the lock, found the water point and Martin and Dad sorted out filling the water tank while I made bacon butty's for breakfast! There was another boat taking on water just ahead of us too and they were going in the same direction. They were a lovely couple who owned their boat. They were heading to Stratford but they were going to stay there for the day before heading on to the canal the following day! 
There were two more locks to do before getting to Stratford and because they were double locks on the River Avon, we were able to do them both with the other boat......not only does it halve the work but it also saves water. Every time you use a lock you are using a massive amount of watery whether you are going up the river/canal or down it, so when you have double locks it is always better to share them if there are any other craft around. 
Once we had done those two final locks, we were on the edge of Stratford upon Avon, the home of Shakespeare and the RSC or Royal Shakespeare Company! It also signalled that we were at the end of (or beginning of depending which direction you were going!) the River Avon. And that was our first experience of both the Rivers Severn and Avon coming to a close, now it was back to what we know best which is canals! 
We turned left off the River Avon and on to the Stratford Upon Avon canal. The one main problem with this, to start with, is that Stratford is incredibly popular with tourists, especially right around Bancroft Basin, which is slap bang in the middle of Stratford with the RSC theatre on the banks of the river Avon too! This means that when you go through the first/last (depending which way you are travelling) lock, you are on show. There will always be lots of people milling about, especially on a Saturday and when it's not raining! ;-) 
We got onto the canal with no problems but we decided to tie the boat up after getting through the basin because Dad had spotted a Baguette Barge on our way through! We all fancied one for lunch so we stopped to get them and pick up some papers. In hindsight we should have stayed there longer and done some shopping but we carried on after lunch because we had thought there were both a Tesco and a Morrison's fairly close to the canal a little further on. Unfortunately neither were that close and there weren't any sensible mooring places close by either which was a bit disappointing. 
We ended up going as far as Wilmcote before we stopped. We knew there were two pubs here we just had fingers and toes crossed that they could feed us! The pub we went to was called The Mary Arden and it turned out to be brilliant......not only did they serve food, they served quality food. We were able to buy Dad his belated birthday meal and wiped out our IOU! ;-)

  Cruising the Stratford Upon Avon canal on a beautiful day!


SUNDAY 21st SEPTEMBER 2014
We had a bit of a lie in this morning, Martin and I didn't get up until around 9am and then Martin and Dad went up to the village shop to see what they could get. As we hadn't stopped at the supermarkets yesterday, they tried to get what they could from the village shop. They were reasonably successful!
We left Wilmcote around 10.20am and had a destination in mind but we went past that destination as we were doing so well. Martin was working the locks while Dad and I shared driving the boat. We got through 24 lock miles. That means we did 9 actual miles and 15 locks. Add those two together and it comes to 24 and if you divide that by 4 you can work out a rough estimate of how long it should take to do that. 4 into 24 is 6 so it should take roughly six hours to complete all that. It's not an exact science because you never know what hold ups you might have but it is a rough guide! We started today at 10.20am and we were tied up for the evening by about 4.30pm.......roughly six hours later! 
We stopped tonight just after lock 25. It was a lovely little stretch of the canal, very quiet and we didn't need to go anywhere tonight as we'd eaten lots of bits along the way today. I ended up having a sleep, while dad had a wander and Martin rested his weary body! 
Martin had managed to get a TV signal, even though our phones were a little less co-operative! The previous days episode of Doctor Who was repeated on Sunday night so we watched that this evening, after which I went to bed, knackered! ;-)

MONDAY 22nd SEPTEMBER 2014
We had a chilly night overnight and for the first time Dad put the heating on this morning because it was cold and damp to start with. There was a mist about this morning too, which lingered on the canal for a while, it was beautiful though and we have one of the most stunning photos from the trip! 
We were up and on our way early today as this was going to be a hard work day. We had the Lapwork locks to do today, one of the areas on the canal that was loaded with locks. We had chosen the spot that we wanted to stop at for the night but to get there we needed to do twenty six lock miles. This was made up of four miles and twenty two locks, hence the reason we were on our way by 8am.....ish!
We needn't have worried though as we got a good system going.......Martin would set the lock, so he would empty it if it needed it etc and open the gate ready for me to drive in......yes, I was the captain for the day, Martin and Dad did the locks while I drove the boat! 
Dad had actually made an interesting observation through this trip, it was always the ladies who were sent on to do the physical work of sorting out the locks and the men drove the boats into them. I said that I was convinced it was because generally women aren't confident enough to drive the boats.......I pointed out that I was okay because I had Dad as my teacher! I actually meant that genuinely and in a positive way, Dad has SO much experience and he's been teaching me to drive Narrowboats for as long as I can remember! When he remembered he asked a lady who was setting the lock for her husband and sadly I was proved right because she said she didn't have a clue when it came to driving the boat! ;-) 
Anyway as I said, Martin would set the lock for me to drive into.....we are going up hill so you go into an empty lock, open the paddles and fill it with water so the boat rises up to the level of the canal above you. Martin would open one paddle and then walk on to the next lock.....if it was reasonably close.....Dad would stay at the lock to control the water and once I'd driven the boat out he would shut the gate behind me! We had a really good system going and got through the locks really well. We completed the twenty six lock miles we wanted to do and ended up at a place called Hoxley Heath at about 2.30pm. Martin was knackered so he stayed on the boat and showered while Dad and I walked up to the village to get supplies and cash. 
We booked a table at the pub on the canal side called The Wharf Inn. We went up about 6pm and had a lovely meal there........yet again Dad and I ate far too much and had to leave having a dessert again! This was becoming a feature of this holiday, no dessert because we'd eaten too much and no ice cream during the day either, which was a complete disaster!! 


   Navigating a lock on the Stratford upon Avon canal! 

 




TUESDAY 23rd SEPTEMBER 2014
We had decided all together that we didn't need to go too far today. We had been asked by the boatyard that we don't stop at a particular area overnight, they had had problems such as theft and break ins etc so they didn't want anyone staying overnight from bridge 10 on the Stratford canal until past the long tunnel on the Worcester Birmingham canal. This was fine but it meant that we had to stop just before it and get this stretch done in a day. We had worked backwards from giving the boat back on Saturday morning, we needed to be at the yard or close to it on Friday night which means being at the top of Tardebigge flight on Thursday night to complete it on Friday. We needed to do the no stopping stretch on the Stratford in one day so we decided to go from Hoxley Heath along to bridge 12/Dickens Heath today which would be six miles and only a few hours cruising time. It would mean we could do the no stopping bit tomorrow and give ourselves a quiet day on Thursday to be ready for the hard day on Friday! 
We ended up doing what we'd said and we stopped just after bridge 12 which was Dickens Heath. We had no idea really what was on offer here so Dad decided he would walk up to the village to see what was available......we were hoping for a Chinese takeaway tonight! ;-) He came back having found a Tesco express, a pharmacy and a Chinese takeaway so full marks to him! 
I had a shower this afternoon, the shower room on this boat was a reasonable one considering you are on a barge. We had worked out that this barge was 58ft which was three feet longer than the one we had on the Mon and Brec canal last year. You could tell too because both the shower room was bigger and the living room area was better laid out too. It's amazing what a difference thirty six inches makes! ;-) 
After my shower I decided that I'd walk up to the Chinese with Dad while Martin (who wasn't feeling great) stayed on the boat. We popped to the pharmacy because I needed some more dressings for my elbow which I have managed to bash twice quite badly on this trip. I have got a vulnerable elbow anyway because of how I sleep......I'll explain that another time.........but I managed to misjudge the step at the back of the boat one afternoon. I thought I was on the bottom step but I wasn't I was on the next one up and I scraped my elbow on the side trying to catch myself.....I ripped the skin right open and made it bleed quite a lot! We were looking after that and it was healing quite nicely when we noticed it was looking very sore again so I must have bashed it, without realising this time, because the scab had come off and it was all open again, so we got some fresh dressings from the pharmacy to try and help it to heal.......again! 
We ordered our Chinese, Dad popped to Tesco and once the Chinese was ready we walked back to the boat. It was wonderful food, really enjoyable, we watched a bit of television and then I was in bed by 9pm! :-) 




WEDNESDAY 24th SEPTEMBER 2014
I can't believe we only have three full days left on the boat :-( I love these holidays so much. I get really excited in the build up to it and then quite flat when it's all over. There is just nothing like it, in my opinion! You have fantastic scenery, you are travelling from pub to pub, the fastest you can go is around 4mph, everyone helps everyone else, it is just the most unique experience and the three of us enjoy ourselves a lot when we do these holidays. This one has been extra special because of Dad's retirement and the fact that we have done two weeks......We needed the two weeks though, you could never do it in just a week! When we were looking at booking this, Dad had said that the Avon Ring has a bit of everything on it and he was right! We have had both canals and rivers, lots of locks and stretches with no locks, tunnels, swing bridges, lifting bridges and even an electric bridge. The scenery has been breath taking and there has been plenty of wildlife, plus we have been extraordinarily lucky with the weather, especially for this time of the year! 
Anyway back to Wednesday! Martin and I had a lie in today......actually Dad did too because he didn't get up until about 7.30 this morning! I didn't wake up until about 8.50am though! I think all these early mornings and all the fresh air etc is catching up with me! Martin hasn't been feeling too well today so he's had a quiet one on board which was fine because it was only driving the boat today. The only other things that were on the agenda today was the electric drawbridge, which Martin did, he enjoyed that though because he got to stop the traffic, and a couple of tunnels! 
We left about 9.30am and arrived at Kings Norton Junction, after we'd done the smaller tunnel that was 322 metres and in a little bit of rain. The junction is actually the end of the Stratford upon Avon canal ending and coming together with the Worcester Birmingham canal. It is a T junction and you go right to go up to Birmingham or left to go towards Worcester. I wanted to go right because just up the canal is Cadbury World but we are going to go there on Saturday after we've given the boat back so they wouldn't let me go there today as well! 
Just after the junction we stopped to fill up with water and because it had started to rain we stayed there and had some lunch too. It was a good move because it brightened up this afternoon so we avoided getting too wet! We moved on from here and the next thing we came to was the long tunnel, this one was 2726 metres and took us half an hour to get through. This tunnel is wide enough to pass other boats so it wasn't too claustrophobic, we have been in some where you can't pass and the tunnel roof is quite low which can be quite disconcerting! This is the longest tunnel that all of us have done though and it was really good, it was funny too because straightaway Dad said to me that there was either a boat coming towards us or a boat in front of us with an aft light. I asked him if it could be the other end of the tunnel but he doubted it because we would be in the tunnel for at least half an hour and the tunnel probably wasn't that straight......they aren't usually! After a little while though the light we could see wasn't changing so I used the binoculars to look and see if I could see what it was.....low and behold it was the other end of the tunnel! ;-) This tunnel was literally a straight line from one end to the other which made it a little easier to navigate!! 
We had decided to stop not long after the tunnel at a place called Hopwood. We stopped just outside the Hopwood House Inn where we decided we'd have dinner tonight! It was perfect, just a five minute walk up the bank and into the pub.......just what we like! Dinner was lovely and Dad and I finally managed to have the dessert that we've been trying to have all along but being too full to eat....scrumptious!! ;-)





THURSDAY 25th SEPTEMBER 2014
I didn't wake up until about 8.40am, Martin didn't have a good night which in turn disturbed me. But we weren't going far or doing much today really. We needed to move down to the top of the Tardebigge flight in readiness for doing the flight tomorrow. We've got about 36 locks to go through tomorrow! :-) 
So we were going from Hopwood to Tardebigge today which was only a few miles. We stopped off at Alvechurch for Dad and Martin to pop into the town, Martin wanted to get some things from the pharmacy to help him be okay for the locks tomorrow. When they got back we had some lunch and then moved off again. There still wasn't far to go but we did have two tunnels to do. 
In between the two tunnels we went past a boatyard called Anglo-Welsh and we stopped off for Dad and I to pop into their shop. We were able to get some souvenirs and also an ice cream each! ;-) 
We continued on and had been told at the boatyard that if we go through the first lock, there was plenty of space to tie up in between that lock and the start of the flight. That one lock was a deep one, it was 11 foot deep! 
We found a place to tie up and settled in for the rest of the day, it was about 3.30pm! Martin decided to have a nap about 4.30pm and got up about 6.45pm. In the meantime, I fell asleep on the sofa type seat and so did Dad! We were all up about 7pm and we'd planned to have a bit of a messy dinner to use up the last of a few things. The trouble was none of us felt like much! Martin had some toast while Dad and I had scrambled eggs on toast! 
I was in bed again by 9pm hoping for a good night before the hard work tomorrow! :-) 

FRIDAY 26th SEPTEMBER 2014
So, here we are, on our final day of this wonderful adventure! I always feel quite sad when our canal boat trips come to an end, I enjoy them so much......there is just something about them, I don't know what exactly, I think it's the whole everything that I love, I guess there is nothing quite like it, the scenery, the pace of life, the fact that everyone helps everyone else, it is just so unique as an experience! :-)
We were all up by about 7.45am and we were underway by about 8.30am. One of the guide books that we were using had estimated seven hours for the bit that we were doing today but although we were fairly sure it wouldn't take us that long we needed to allow enough time just in case! It's all very well knowing that we could be organised and efficient but we didn't know who would be in front of us or who we'd meet on the way down the flight of locks. We had tied up a little way back from the first lock last night but Dad had walked down to see how far back we were and whether there was any other traffic in front of us. There were two boats tied up right by the first lock, one was another hire boat from the same boatyard as ours was from and the other boat was a private boat, it didn't matter though as we didn't know what time they would be leaving in the morning, but at least we knew who else was about! 
We got underway and were at that first lock within a couple of minutes. The other hire boat was just setting the lock so we just tied up and I waited on our boat while Martin and Dad helped the other people. It turned out to be a couple but the wife had become quite poorly and they were returning to the base early so that they could return home. It meant that the man was having to do everything himself so Martin and Dad tried to help him as much as they could. Because he had gone through first it meant that we would need to reset the lock once he'd gone through. We were going downhill with this set of locks, so you go in with the lock full of water. Once the boat is in the back lock gate is shut and those paddles are closed. The paddles on the front gate are opened and that let's the water out of the lock and lowers the boat down to the level of the canal below. Once the water is down at that level, the front gates are opened, the paddles are closed and the boat can pass through. The boat that was ahead of us did this but then the water is then down at the lower level so Martin and/or Dad open up the paddles on the top gate so that the lock fills with water again.....once it is full they open the gate, shut the paddles and I am able to drive the boat into the lock. The only time that this process would be different is when there is a boat trying to come up the canal. If the guy who is ahead of us has gone through the lock and we are there waiting to go through behind him, we need the lock to be full again but if we see that there is someone coming up the locks, even if we are at the lock first, the correct thing to do would be to let them come up through the lock before us as the lock is set ready for them to come straight in. If we just went ahead and filled the lock and went through the procedure for us, we would be wasting two locks worth of water, so by letting them come up the lock, we would be using the lock far more efficiently. We were OK to start with as it would be at least a couple of hours before we would start to meet any uphill traffic. The other positive about meeting something coming the other way when you are doing a flight is that you don't have to shut the gates behind you! Normally once we have used the lock and have driven out of it, we would then close the gate behind us. We don't know who is going to be using that lock next, uphill or downhill traffic, so you can't set the lock one way or the other, so you shut the gates and leave the water as you have just used it so if you meet someone coming up the flight while you're going down it, you can leave the gate open for them so that they can just drive straight into the lock......it works for us too as the lock they have just come up through means the lock is full of water so they don't shut the gate behind them either and I can just drive straight in too! 
Anyway back to our last day! To get us back to the boatyard where we have hired the boat from, we need to go through thirty four locks over three miles today, which is why it could take a long time! I believe the drop was well over two hundred feet from the top lock to the boatyard! 
The actual Tardebigge flight is thirty locks which includes the very deep one we went through last night. It took us four hours almost exactly, to go through the twenty nine locks today as I was driving out of that bottom lock at 12.30pm almost exactly! :-) How's that for efficient! 
We were going to stop then and have some lunch before returning to the base but there was nowhere to tie up so we ended up just going straight back. It actually did us a favour though as we got tied up on the actual wall of the yard, there were a lot of boats that arrived back behind us and they had to tie up next to other boats, so where we were on the quay side we had two other boats tied up to us as there wasn't room for them all up against the wall. We were also able to move our car so that it is just next to the boat......it means that unloading everything is a whole lot easier! ;-)
After we'd had a bite to eat we started unloading. We had already decided that we would eat out tonight, we had nothing left on board to eat anyway and we didn't need the hassle of cooking tonight! We had a lovely meal at a pub just around the corner from the boatyard called The Navigation Inn. Once we'd done that we went back to the boat and after about half an hour I called it a night and although that's the end of the canal boat holiday, we aren't going home until Monday. Martin had found out that it is the tenth anniversary of the musical Billy Elliot and to celebrate they are broadcasting it live from London in various cinemas around the country. When the tickets went on sale I phoned up and booked for the three of us to go as it is being shown on Sunday afternoon.......what better way to finish our holiday?! We've booked into a Travelodge for a couple of nights but that left us with Saturday free as we have to be off the boat by 9.30am. We are only just around the corner from my favourite factory, Cadbury World, so guess where we are going tomorrow.......a pick me up after handing our boat back!! ;-) 












SATURDAY 27th SEPTEMBER 2014
We were up early again this morning and so were all the other boats moored around us! We have not hired a boat from a big company before, we've always gone for independent companies which generally have only a handful of boats. It meant that doing the handover back to the yard was a little chaotic due to lots of boats being handed back in........obviously not literally! ;-) 
We finished the last little bits of packing, that can't be done until the last morning, we had a small bite of breakfast and Dad and Martin finished loading the car. When we had picked the boat up we were given a really nice map in a polythene cover. It was a map of the Avon Ring that we had out on the table as a useful reference guide all through the two weeks. It was a really lovely map that I had wanted to keep to frame it when we get home but it had got a bit tatty in our use of it. We had to go to the Black Prince Narrowboat office to settle up for the fuel etc so while we were there I asked if I could buy another of those maps. They have obviously come across that a lot because they had all the different routes available for people to purchase. They also had some lovely goods that I wanted to get a few of as souvenirs and presents! We settled up for the fuel, it is actually very fair these days because it used to be quite common to have the fuel included in the hire price but as the price of fuel has sky rocketed it hasn't been fair that someone taking out a boat for a week gets charged the same as someone taking one for two weeks, so a lot of companies now take a fuel "deposit" before you take the boat.....what Black Prince did was just take the details of one of our bank cards......they send you out with a full tank of fuel and then fill it again on your return. You then just pay for what you have used which is much fairer. 
And there we were, all done for another holiday.......another Canal/River system ticked off our list and what a beautiful time we have had! I hate that last morning, not only do I have to get up at stupid o clock but I have to say goodbye to the barge, the canal, the wonderfully slow pace of life and the stunning surroundings! :-( 
So, as I always feel a little down after handing the boat back, as a pick me up we had decided to pay a visit to Cadbury World. Well we were on the doorstep so it would have been rude not to go wouldn't it!! ;-)
We had all been before but quite a few years ago and let's face it, all I really remembered was getting free chocolate! We ended up with nine full size bars of chocolate that were given to us, three each......I was in heaven! :-D 
We ended up going there early because the boat had to be returned by 9.30am at the latest. It was a good job too as we hadn't pre booked our tickets and by the time we had been round and come out there were no 'on the day' tickets left! 
Once we'd finished there we went for a meal and then found the Travelodge we were staying in. 
The reason we hadn't just gone straight home was because Martin had found out that some cinemas around the UK, on the Sunday, were going to be showing Billy Elliot, the musical, live. It was the West End musical being screened, the first time any mainstream musical was being shown live. It is a brilliant musical which Martin and I have seen in London but that was quite a few years ago and we knew that Dad hadn't seen it so we decided to finish off the holiday with a little treat and it didn't let us down, it was fantastic and it is being released on Blu-ray in November too! 
We saw the show on Sunday afternoon and the cinema was on a big leisure park where there were plenty of restaurants and as it was around 5pm when we came out of the cinema, we decided to eat while we were there. We returned to the Travelodge and settled in for the night. We packed up everything in readiness for leaving and returning home tomorrow.........and there you have it, our wonderful adventures on the Avon Ring! :-) 
XxXxX


Sunday, 7 September 2014

Enjoying the things you can!

When you are living day to day with a chronic illness, whatever that may be, you will find yourself, and in my case Martin, going through a lot of ups and downs and the downs can be pretty horrible at times. Because of that it is really important to make sure you have some pretty good "ups" that you can hold on to through the rough patches. 
I have to say that Martin and I have had a rough few years. 
Twelve years ago I developed MS, which, between the various consultants and Doctors, has been pretty difficult to manage. We had just bought our first house too! 
Six years ago we lost my mum to Dementia. That was particularly tough because when dementia is involved you lose the person while they are still alive and then you lose the person physically. 
Two and a half years ago Martin became very very poorly and he was diagnosed with a malabsorption illness called Whipples Disease. I thank the histologist, who worked out what was wrong with him, every day because it scares me how close I came to losing him. Thankfully he is fit and well again now....it can relapse but we'll cross that bridge if and when it happens!
Last year I started getting very severe bouts of vertigo and at the start of this year I was diagnosed with Menieres Disease. I am not driving at the moment, I need to use a hearing aid now because of the loss of hearing in my left ear and I'm on even more medication! 

So yes, you can say that things haven't been easy! 

BUT through it all Martin and I have had each other (and all our wonderful friends!) and that saying "A problem shared is a problem halved" couldn't be truer in our case! Because we have each other it means that we keep each other going and we look to have things in our lives to look forward to or to take advantage of. This has become very important as it is having something to look forward to or to plan for that helps you through the days where you have so little energy you can't even make it out of bed or the neuropathic pain is at a level that you actually feel/are physically sick because the pain is so intense. 

I've spoken a lot in the past of our love for the theatre, both doing it and watching it, so that is something that we try to have in our lives whenever we are able to.......or can afford it!
We also love the cinema so that features a lot in our lives.......and there is quite a crossover between that and the theatre these days with National Theatre Live (NTLive) projects that are theatre productions being shown live in cinemas across the country. We have been able to see four West End theatre productions, The Audience, Warhorse, A Curious Incident of the Dog in the Night Time and Skylight and through different companies we've also seen Merrily We Roll Along and Billy Elliot, in this way so far, without having to drive around four hours to London and four hours home again each time! 
There are also short breaks and holidays that we have been incredibly lucky to have in the past and will have again very soon!
It is all these sorts of things that enrich our lives and are the things that counter-balance all the down times of living with illness every hour of every day.

This year has, without a doubt, been a pretty good one for us with respect to "doing" things!
 
Martin and I had discussed between us that we wanted to get out more this year. To take my own advice and to plan things for us to do like going for a drive or going to the zoo. We wanted to make an effort to put those positive experiences in our lives. It can be so easy to get in a rut or a circle of getting up each day and just plodding through, where every day is the same and then you get to a point where you get comfortable just staying at home and you don't want to go anywhere. 
We didn't want this to happen to us, so, finances permitting, we started thinking of what we'd like to do! This was made a whole lot easier when we had some amazing input from charities and our local council!

It started off with us getting a grant from the MS Society that enabled us to go to Disneyland Paris for a week! It was incredible and the knock on effect from going on that holiday is still being felt now. I often look at the photographs and have a giggle at the memories we have from there.
When we came back, I started using Direct Payments to organise and pay for my care. I had been having care for six days a week, an hour and a half in the morning and half an hour in the afternoon and this was being provided to me through a care agency who were paid directly through the local council. But there is a scheme now, called Direct Payments, where the council will give me the money to pay someone to come in for my allocated hours. I have someone in for an hour and a half, six mornings a week and I have two hours a week allocated for swimming. I have been lucky enough to find someone who is a friend more than a carer. She comes in for those nine hours a week and helps me with personal care etc. The council have set up an account and they pay my money into that and that is used to pay for those eleven hours a week. It is a great system and it has given Martin and I a greater sense of freedom.

Along with this I was able to organise a respite grant. I had no idea that this was even available to me but it is! I believe it is there for anyone receiving care in the community. I was awarded two weeks worth of money that I can use to give us both - Martin and I - respite, we get the equivalent of the cost of me going into care for two weeks (without me going into care!). We have been able to use this through the year for all sorts of trips, we've done a London theatre trip, we've been to see lots of things at the cinema, including NTLive events. At the beginning of September we were even lucky enough to go to London to see Kate Bush.....her first live performance for thirty five years! 
It really has given us incredible opportunities! 
It was very strange to start with though, we had gone for so long without getting any help at all and here we were being given money that was to be spent on things for us to do.......it was very weird!! ;-) 
It didn't take us long to think up ways to spend it though and as I've said we have been able to do and see lots of things that would never have been possible otherwise! 

It has been a great year.......so far and it's not over yet! We have just been on another canal boat holiday, with my dad too, of course! We did what is called the Avon Ring which was a circular route. It started on the Worcester Birmingham canal. Then we went on the Droitwich canal, the River Seven and River Avon, the Stratford canal and back onto the Worcester Birmingham canal. It took us two weeks and was truly wonderful.....Look out in the coming days for my post all about the holiday! :-) 
On Saturday we are going back to London for the afternoon. We are going to the Cadogan Hall to see Claire Balding interviewing both Paul Merton and Danny Baker. Both of them have new books out and they are both books that we would want to get, so to hear them talking about them will be fun! I like Claire Balding too so all round it should be a good afternoon! We are lucky too because included in the ticket price are copies of both of the books! ;-)


Whether you have ill health or not, everyone needs positive things to do and to look forward to.......it's what gets us through life........isn't it?! ;-)

Whatever you are looking forward to or are doing at the moment, enjoy it and savour every moment! ;-)
XxXxX