A weekend of freedom!

On Friday, I had two goals; one - to get home for the weekend, two - to make progress in the ppam aid! 

I knew that on a Friday the day starts with a "game session" in the rehab gym as a fun, end of the week treat!  I totally understood why this is a good idea in terms of moral etc but I was a little concerned that it meant my first goal might be unreachable as the afternoon physio session was balance class, a core circuit training session.  Much to my relief, the game session was just the first hour (or half hour as the Ward were not entirely on the ball with the drug rounds so no one was there on time). 

It was quite fun having a game of Wheelchair badminton though I had to continuously remind myself to curb my competitive impulses to make sure I let my teammates get involved.  This became all the more important when I came unbelievably close to hitting someone in the head with the racket when going for a shot, thankfully he didn't notice, the physios on the other hand winced!

So from half 9 until 12 I was in the ppam aid practicing getting some weight through the leg.  The goal was get walking outside of the parallel bars. Goal complete! After a lap in the parallel bars my physio got the crutches for me to practice in the bars. I did a lap, and then kept going.  I was satisfying to be out on crutches wandering around the gym and as time went on I upped the anti and started doing a step, slalom and rough terrain.  In many ways, it feels so incredibly natural to be up walking and in many ways it feel so wrong because the foot isn't there.  It's all going to take some getting used to, although an actual prosthesis should feel more natural as I'll be able to bend my knee!

So goal one, to get home!  Now roehampton aim to get people home for weekends as its good for the psychological side of rehab, it's beneficial for discovering what life skills you might need help to relearn and nothing happens in hospital at the weekend anyway so I was all set to be going home on my first weekend.  However, dispite the above, the blanket rule on your first weekend there, so soon after surgery, is no way - you don't go home. The issue is that the wound is fresh and still held together with stitches. My consultant made it very clear, if you fall over, it will split open - how grim would that be! It took a lot of
pursuasion and some slight exaggerations on the wheelchair accessibility of the house for them to be persuaded but ultimately, they relented.  I think they read between the lines and realised what I was really saying was "I AM going home, but I'd rather do it with your blessing than without!"
As I told them, if I go home I'll be chilling out with Morgan, if I stay in Hospital I'll get bored and think of stupid things to do or go and explore the area in my chair...
They gave me a few rules which I've (pretty much) kept to!

So physio was done by 2:30, I was in the car with Morgan and Mark (Morgan's dad) by 3 and heading home!

Weekend at home has been absolute bliss!! We've done very little but my little family (me, Morgan and Poppy dog) were fully reunited! Poppy was both outrageously excited to see me and a somewhat perplexed by the Wheelchair but it's crazy how pleased I was to see her. Week and a half away from the pooch was far to long!  Also had the pleasure of having some good friends around for a Chinese on Saturday night which was great. The rubbish bit of going home for the weekend is the knowledge that tonight I travel back to the Hospital where I'll stay for another week but that's most of a day away so we are ignoring it at the moment! Instead, I'm just snuggled up on the sofa with my wife who's the best - happy days!

In other news I'm trying to move off the oxycontin, dropped down to 10mg twice daily.  Stump pain, generally good though its a little tender. Phantom pain is very weird when it happens! Like having an electric shock put through your foot (which no longer exists)!  At times it can be extremely painful.  It's interesting though, if I'm busy it won't happen, if I'm in the ppam aid or doing physio, nothing! If I'm not doing anything is when it's likely to play up.  It's as though when I'm using the leg in some way I con my brain into thinking nothing happened.  Phantom pain is really common in the early days after amputation and for most people it settles down over time. It's encouraging that I don't get pain when the leg is being used though, definitely a promising sign.

Final thought - blog is really long. I must be more concise! Sorry if you got bored...

Welcome to roehampton!

So on Wednesday, exactly one week after surgery I moved to roehampton, with the help of Morgan, her Brother Oliver and his girlfriend Sammi! 
It was nice to get in the landy for the journey even if I wasn't allowed to drive it - come on DVLA, get back to me and clear me to drive left footed!!

I was sad to say goodbye to Parkside. Having a room to myself was a treat which I am already missing - the only person I'm eager to share a room with is Morgan and so 5 blokes (all, I think over twice my age), in my space is simply not the same! I'll also miss the food. Parkside is a private hospital, an expense worth incurring to get the surgeon Mr Ward who, along with being keen to be filmed, by all accounts is renowned for being incredibly good man to have chop your leg off, without NHS waits enduring pain and limitations.  I'll also miss the food at Parkside.  Here at roehampton, back under the care of
the NHS (which, for the record never ceases to blow me away!), is a little more basic food for the masses... 
In reality, I digress given the food I eat and the sleeping arrangements are of no importance or interest to anyone bar me! The biggest issue is that not only am I in a WiFi free zone but signal is something which simply doesn't exist on the ward so I am connectable everytime I go outside/to the entrance foyer  of the hospital so don't expect quick responses to texts/calls/tweets/messages/comments...

So having made it here to Roehampton around half twelve as previous planned we had the odd moment of turning up to the bed which was due to be mine and discovering the man who had the bed before me hadn't actually left yet so we dumped my stuff and made a subtle retreat to find some food! I didn't feel it was my place to boot the guy out, or put him under pressure - thatd be all kinds of awkward!

So Wednesday in all honesty, very little happened.  I briefly  met Abby, my physio who told me where to go Thursday morning where we would get started. Beyond that I answered lots of questions so that the nurse could check their records were correct and to be honest that was about it beyond getting to meet some of the other patients! 

Thursday morning and rehab began with a being in the gym by half nine having had breakfast, a shower and set myself up for the day! It was good to get started with some core exercises, leg (what's left - my short leg as Morgan calls it as a nicer term than stump), and hip exercises as an aim to help to prepare my body for the stresses of prosthetic limb wearing when the time comes.  Having spent the last year or two making improving my core strength and fitness one of my top priorities, it was satisfying to really make my physio scratch her head to try to find ways to think of exercises that would challenge me! It was satisfying that in the end, she was giving me exercises which I could do but with a lot of effort which I then challenged her to try and she really struggled - not bad for  a bloke with a titanium crammed spine!

I'm really aware of how lucky (don't believe in luck but you know what I mean), I am.  If your going to loose a leg, being otherwise fit and well, and knowing in advance that it will happen allowing you to put in huge amounts of prep work makes a huge difference to the rehab process (so far at least)!

Part way through the morning I was pulled out of the gym to have the wound examined (new hospital, they like to check these things). Having taken the dressing off, the nurses response looking at it was "Mr ward really is the best!" I concluded from that that it was all looking good so happy days on that front.  Because it was all neat, clean, not oozing, or wet I'm now just covered by a standard glorified plaster dressings just to keep it clean. Following that I was presented with my stump (or little leg) compression sock. Basically it's a snug fitting tight that compresses the stump to limit swelling and help mould it into the best possible shape. That's right, I wear tights and will forever - get over it.  Any time I am not sleeping, or wearing a prosthesis, my stump sock sill be donned.  As Morgan kindly pointed out, it looks very sexy - I imagine she was being totally genuine at the time!  I've avoided getting any ladders so far so Im doing well. 

After a busy morning it was lunch back on the Ward, followed by Morgan and Milla (friend from Carroty wood days) arriving which was lovely and at about half two I made a move back to the gym for some more physio.  Because the wound was looking good, I was given the chance to get myself up on my foot in the ppam aid.  The ppam aid is like an inflatable prosthesis which covers your whole leg and allows you to partially weight bare. It's part of the training process and it helps with swelling, desensitization, and to practice getting on your feet to some degree. Because it covers your full leg you have no knee movement so it's an odd movement but it's good to be on your feet.  For my first go I was just working within the parallel bars but I was amazed at how well it went with various laps of the bars done just on the first go. It's fair to say it hurt a bit but less than in was anticipating given the bruising and the wound!  In theory, when I next get in the ppam aid I'll be using crutches as apposed to the bars!

Following physio, Morgan, Milla and I made a break from the hospital and had a little run away to be anywhere that wasnt a Hospital.  We headed up the road not knowing where we were heading and ended up in Barnes where we had a wonder (they walked, I wheeled)  before going out for a meal. It was really nice to get some freedom and some non hospital food with company of my wife and our friend.  Upon return to the Hospital they left for home and I went to the gym, blagged myself an induction there and then, had a workout which felt extremely refreshing before attempting some degree of uni work... Progress is being made, I'm not sure it's my best work but itll do!

As Friday morning roles around its looking all set for another day of phsyio. Accoreding to my timetable (which gets written up on a whiteboard above my bed each day for the following day), I'm expected in the gym from 8:30 til 14:30 with an hour and fithteen break for lunch at midday! Hopefully it will prove productive and beneficial.

Stump continues to do well. Pain well managed by the drugs although I do need to keep weaning myself off the oxycontin as its opiot based and extremely addictive apparently.  Phantom sensation remains a very regular thing pretty much all the time but not really bothering me... Phantom pain springs up occasionally here and there as a sharp shock, generally if the little legs been still too long. If I get it moving/gently message the stump it settles down pretty well on the whole!

It's incredibly weird being here and going through another rehab process!  In many ways it's incredibly similar to the Stoke Mandeville set up which in some ways is good because it gives me the advantge of knowing roughly what to expect and so on, but at the same time its hard work for morgan and myself.  Theres that real sense of you know what, we've done this before and don't have any desire to do it again.

Ultimately though, it's what we are doing so we may as well do it well.  One of the inpatients was talking about what seemed to be the average stay for an impatient and how well they could walk when they left.  It was interesting to listen to his views but in my head I was just thinking stuff that, there is going to be nothing average about my stay! I WILL either progress stupidly fast and be discharged much faster than average or I'll stay an average amount of time and be discharged with mobility levels that are unheard of upon standard discharge! Hopefully both of those things! I have come to the conclusion average people get average results and so I refuse to be average!

unveiling the stump!

I realize its been a few days since I was last on here and its fair to say not a huge amount as happened in terms of the leg itself but thats to be expected this early on.  I've rested lots and have been enjoying having my own room and pretty good food while it lasts.  I'm off to Roehampton on Wednesday and will not be in my own room (I wouldn't want to comment on the food quality until I get there).  

I'm not used to it yet as such...

So what has been going on?  I've been doing my physio exercises on a pretty regular basis.  These basically consist of laying in various positions in bed and moving whats left of my leg in various ways for a few reasons; to help keep flexibility good, to keep as much muscle bulk in place as possible, to keep circulation good as possible (and to fill the time I guess..).  I've also been lent a hospital zimmer frame - how cool am I?! to get around my small room on.  I've done trips from bed to toilet, from bed to chair and other variations to and from those destinations.  Its exciting and I mean that genuinely though I realize it might sound a little sarcastic.. What is taking some getting used to is not needing to bed my knee to walk with the zimmer.  Its a little instinctive to bend the knee but of course that's totally unnecessary now my leg is considerably shorter!   Its nice to be able to get out of bed though. 

me, not at my peak! 

We've been playing with what drugs and how many drugs I should have for a while.  I'm told its important to stay as pain free as possible in the early days of an amputation as it helps keep chances of long term issues such as phantom limb pain at bay.  To begin with I was on some decent oral painkillers and a PCA (patients controlled analgesia - I push a button and something stronger than morphine hits my through an IV).  The advantage of this is that if I so desired, I could have more drugs up to every five minutes.  Its biggest downside was when I was asleep. Ill give you an example, on Thursday night I probably fell asleep about midnight and was well pumped with meds. I slept quite well until about four am when I woke up and whilst the four hours sleep were great, whilst sleeping I had of been unable to push my button.  This meant I woke up and was in so much pain.  I was literally lying holding my stump in the air because contact with the pillow it was on was just too painful, so I just watched painkillers drip their way into the IV and into my arm.  It was not a fun way to spend an hour or so.  
We seem to have the drugs/pain better managed now.  Having spoken to the medics, we actually decided to get rid of the PCA (bonus, no lines going in me now), up the strength of the oral meds and have oramorph (oral morphine) as a support drug as required.  Its been fantastic, and pain has been managed incredibly well since I have been on it.  Only real downside is that it leaves me as high as a kite feeling totally detached from the world around me, or sends me close to sleep.  As the pharmacist who visited today to check how I'm doing observed, that doesn't matter really - it seems my uni work is not her priority.  I am still on these drugs so I will blame them for any spelling/grammar/general lack of sense issues in the blog!

I had the treat of turning 25 on Saturday which was as lovely as it could have been all considered.   Well, apart from the new painkillers making me violently throw up first thing but that was before guests arrived so we draw a line under that!  I had Morgan, her auntie Kelly, and various friends come over the course of the day which was totally lovely - and they came with a spectacular cake!  Massively blessed to be visited by Jonny and Fiona, Jonny who had only been

my cake, with candles (right under the smoke alarm!).

discharged from stoke mandeville the day before after a 5 month stay - what a hero!  I cant claim it was the best birthday Ive ever had, but I can say it was the best birthday I've had in hospital, and the best birthday I've ever had with a missing foot so some definite wins there so thanks to all involved, including those who sent cards, gift, Facebook messages, texts etc.  All were very appreciated!  One of the birthday treats from Morgan was to be signed up to do a tough mudder event with some friends (look it up if you dont know!).  This is how awesome my wife is. I've not even got a prosthetic yet and already she has every faith that I can achieve this at some point in the future so me, Matt and Oliver will be doing this sometime soon as the team "five and a half legs" so watch this space. If anyone wants to join us we can always add more legs to the team! 

Beyond the birthday, I have had visitors every day, from my parents, to morgans parents yesterday, another of morgans aunties, friends and Morgan has been up every day. phone calls with a few others also help to take my mind out of the hospital.   The company is fantastic and helping to keep me sane.  There really is only so much day time TV a man can take after all. 

So hows life with the stump.  It remains weird but not terrible I am pleased to say.  I continue to get plenty of phantom sensation but generally not phantom pain which is great! Its very odd getting mild cramp or pins and needles in a foot that no longer exists, but its not painful and that's the key thing.  Morgan is getting used to it as well which is good.  She has touched it a few times which sounds odd but is universally considered a really good step towards becoming used to it.  That's not to say its normal now, far from it.  There are still moments when we are together and Ill stretch my leg and move it about when she is not expecting it and the sight of the stump takes her by surprise and I am swiftly asked to put it down which is fair enough.  Its one thing to get used to it, its another to have me wave the thing in her face after all!  Dan, a friend offered an interesting perspective when he told me "it almost looks too real."  He then explained himself and said because he is so used to seeing such incredible special effects in films and TV he looks at it and thinks, wow that really well done as an effect rather than - whoa you've got no leg.  The crazy world we live in I guess.

Little things surprise me, for example I got out of a hospital gown and into shorts and t-shirt a couple of days ago.  It took me three, repeat THREE goes to put short on on Sunday, simply because you instinctively  go to put the shorts over your foot, the foot not being their meant I miss judged it and missed my leg, simple as! Funny without a doubt, but also really odd!  

Big news of today was that the dressings came off the stump for the first time and I saw it down to the skin.  I'll be honest, I was amazed by how neat and tidy it was.  Its swollen and bruised, but much less so than I was expecting, it actually all looked really neat and tidy!  This surgeon knows what hes doing!  Its now wrapped back up in a much lighter and smaller dressing which is nice but it really threw me.  The original dressing was think and weighty and restricted my knee, so moving my leg felt s little like moving my leg used to.  Now its in a slimline dressing its extraordinary how light my leg feels.  Its like it floats!! I imagine I will feel somewhat differently when I am trying to get used to the weight of a prosthetic... 

I'm thrilled that help and love from others isn't just directed to me at the hospital.  Its been awesome to see the support Morgan has been getting from home from very kind people willing to be around for her, help with walking Poppy, even offering to move in to give her some company and support.  Oliver my brother in law has basically lived there for the last week and its great to know that however much it sucks that I am not at home with my lovely wife, she is being loved and supported by both family and friends in my absence!

Right, reading back, this is really long so I'll sign off as your probably bored, but I will add a link to the video of the stump being unveiled.  Its a bit long, and if your squeamish you might not enjoy the final minute but its there if you want to watch it.  I'd argue its worth watching just to see my surgeon enjoying being filmed - he seemed to love it, and tried to really engage with the camera.  
Hope you enjoyed reading! 

Heres the link, last couple few seconds seem to have been cut which is annoying so I'll add a screenshot below (bit gory, don't scroll down if you don't want to see)! -   https://www.youtube.com/watch?v=lfnAfnGtNos

I'm actually an amputee...

So two days ago the operation happened! I've been a below knee amputee since Wednesday.  I thought I'd share some initial thoughts but am on some impressive painkillers so this may or may not make sense...

It hurts - I realise this seems like pointing out the obvious but nevertheless I bet you were wondering! Whilst it does smart from time to time, it's certainly not the most painful thing I've dealt with, but it does hurt.  I'm on a fairly spectacular mix of drugs at the moment, I've been warned that the pharmacists won't be happy as if I overdo my PCA (patient controlled analgesia) I could end you struggling to breath so sensible use only! But it generally keeps it manageable.  sleep is an issue though. When I sleep, I cannot push the PCA button, so I don't get any gradual top ups, so last night at 4 (ish) there was a moment with such pain I was holding my stump in the air to keep it from contact with anything... Quick call to the nurse for some quick drugs were the way forwards!

Still feels right - it was a big decision to loose a foot to achieve more mobility with less pain.  Going into the op there was always a risk that I would come out of theater and think "what have I done?!" it's very common after an amputation to feel a sense of bereavement and loss so I realised there was a chance of feeling bad about it afterwards. I'm thrilled to say I don't. It still feels good and right.  That's not to say I won't have a stage where I wonder if it was the right choice but at the moment, despite post op pain and the frustration of bed rest, it feels like a positive step towards improved mobility and less pain!

Phantom sensation is odd - phantom sensation and phantom pain are two different things! Sensation is the feeling of the limb still being there and is extremely common, phantom pain is your brain remembering the pain of the limb and is fairly common in the early days of an amputation, for some causes real problems! I'm pleased to say at this stage, i've only been experiencing phantom sensation.  it's an incredibly odd thing to get pins and needles in a foot that no longer exists, or having an itchy toe. Even just the feeling of the foot being there. I've already had a couple of moments where I've looked down and taken a moment to work out where my foot is.

My wife is incredible - coming up on Three years ago, I gave Morgan a horrendous experience to deal with when I had my initial accident and she had to help me through an intensive care experience, through to the slow rehab (both in Hospital and continuing at home for the last couple of years), slowly building up further strength, better mobility and sadly discovering the issues of the ankle.  There is one thing I hate about this, and that's the fact I'm putting Morgan through this horrific experience once again. The next 6 (ish) weeks we're going to be going through this rehab process once again (which will continue at home after discharge), and it's not fair for her to have to deal with it all again.  despite that, she blows me away with her strength, her willingness to support me, her ability to appear with a smile on her face dispite it all. She is an incredible lady!

I'm excited about the future - despite all of the rubbish we are dealing with right now, I genuinely believe we are starting a new journey which is going to be better once we are though the rehab stage.  If I can master a prosthetic well (and I'm confident I will), I will not let anything stop me! I'm feeling positive that I should be able to have some real adventures with Morgan. I want to climb again and to paddle again. I want to take morgan to Petra - we were really excited about going to Petra on our honeymoon but when we arrived were then told it would be inaccessible from the wheelchair! Most excitingly, I hope this will allow me to be me more with nieces, nephews, and in due course my own children. To be able go run around in the garden with James, bethan and Harriet and Toby in due course. To be able to carry my own children (when the time comes) without being scared of the ankle giving way and me falling/dropping a child and as they grow up, to do some real family adventures!
And who knows..  Maybe I'll be in Rio 2016!  Better get training.

A long journey ahead - I have to remember, its going to take time.  It's good and important to be excited about what the future can offer as it gives motivation to push yourself hard but equally, I have to respond to my body and what it is telling me! Rest where rest is needed and be patient as I go through the process.

As the rehab process goes on I'm planing to do some blogging to keep a record of the experience... I know that as I was researching my options I found others accounts of their experience really helpful so maybe sometime in the ffuture this will prove helpful to someone!

Slow processes...

So in August last year (2012), my right ankle was fused meaning it will never move again.  The theory behind this move was to rid me of pain!  For the year prior to that, ever step had hurt and because me foot was in stuck in such a poor position, only if I walked down a steep hill could I get my whole foot flat to the floor. It was a real faff to walk on and extremely painful to boot!  

At the time it appeared that I had two choices...  To fuse it or loose it!  If I fused the joint, the ankle should be pain free but it would never work as an ankle again - beyond basic walking, and had the potential for long term complications on the surrounding joints such as the foot, knee and of course the spine (anyone reading this who doesn't know me, I broke my back in two places in the same injury in 2010, a whole other story for another day blogging...).  The other option was to loose the foot and have a below knee amputation.. This seemed quite drastic but would have the potential for better walking, more activity, less strain on other joints and so on but of course it came with the complications of only having one full leg and using prosthetics, needing to swap legs for different activities and so on.  In reality, I was quite sold on amputation then as there was an element of finality about it but after a few appointments my consultant had won me around to the idea the if I fuse it and it doesn't work, I still have options...

The fusion was completed and the op itself went well.  I was in and out of the hospital in a day, although the nurses weren't too happy about it and I went home expecting a 6 week non weight bearing followed by 6 weeks partial weight bearing before full weight bearing.  By the mid January (a little over the predicted 12 weeks), I was just about bac k to moving without crutches.  The problem is, it is not the pain free result we were hoping for!  It's less painful than it was, but in all honesty, its only a marginal improvement, in fact, if i am walking on anything other than pretty flat tarmac, Im still pulling at least one crutch out the car!  The initial thought was that the fusion may have failed but it actually looks very good in the rays and by a process of investigation it seems pretty clear that its the joints around the ankle, at the heel and in the foot which are giving me grief!  A problem that was always potentially on the cards but meant to be 10/20 years down the line.. Not 6 months!  I can only assume the joints took more of a pounding than we had realised and it was all simply over shadowed by the pain in the joint which has now been fused! 

So what now?  It seems we are back to that same question, fuse it or loose it?  We could fuse the subtalar joint and the joints in the mid foot but that really would make walking a nightmare, putting masses of strain on other joints, particularly the spine - my top priority! Amputation now totally looks like the top option, and my treating consultant appears to agree (as does my spinal consultant).  Sadly, it appears that nothing in medicine happens fast.  My treating consultant wanted a second opinion from another consultant who, based on a tiny fraction or the picture came up with a theory of why I am in pain which has more holes in it than your average sieve, but nevertheless, its a theory, which means delays in making ANYTHING happen.  I'm now in the process of waiting to see my treating consultant
 to see his views.  Hopefully, he will have the guts to say that no, that theory is ridiculous so we don't waste 2 months faffing about before being productive!  

In the meantime, I'm meeting with prosthetists, rehab consultants etc and finding out more and more about potential life as an amputee.  Is it weird to be excited?  The idea of less pain, better mobility and more activity is actually thrilling!  Even if I have to put a leg on in the morning to get there!  Who needs four limbs anyway...