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steved

Newbie facing hemipelvectomy

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Have posted under intros but thought I would post here too. I am due a right sided hemipelvectomy (taking half pelvis and right leg) in August and am beginning the process of gaining knowledge and understanding of what I am facing. I am 39 and live in the southwest of the UK with my wife and two kids (5 and 8). I was diagnosed with bowel cancer at 31 and was free of it for 7 years before it recurring in pelvis last year. I am now being offered this op which has never been done in the UK for bowel cancer as the only real means of potential cure. I was very active before my recurrence and want to get back to that in time.

I am interested in anyone who can offer insight into what I am facing. I appreciate hemipevectomies are fairly rare but I Am sure other amputations face similar challenges and would appreciate general advise from people to help me think about adapting now and after the operation. I know little of prostheses (due to meet prosthetic team preop so am trying to get my knowledge up in preparation so can make the most of the meeting) and even less of wheelchairs and crutches which are all going to become part of my life. I am beginning to look at what adaptations to do to the house now and what to wait and see how things are postop.

What do people wish they knew at my stage and what kind of advise can peole give about practical and psychological adaptations that I should be thinking about. It is a whole new world I seem to discovering and much of it is rather overwhelming and baffling (spent yesterday with my head spinning with names of chairs, prostheses and adaptions!) and thought this may be a good place to look for guidance in beginning to navigate my way through.

All advise, signposting, support and ideas welcomed.

steve

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Hi, Steve...sorry you're looking at this surgery, but if it will take care of the cancer I think you'll eventually find that it's worth it. I'm a very, very simple type of amputee myself --left below-knee (or LBK)-- but I know a couple of folks who have had to go through a hemipelvectomy (HP). It is, as I'm sure you've figured out, a pretty darn major operation, but it is "survivable" when it comes to staying active. I'm trying to think of an HP among our members here, but I'm failing...so if someone who's living with an HP kicking around, please check in and offer up some specifics for Steve here!

I know that, at least until very recently, a good prosthesis for an HP was a rare thing. I also know that there have been some significant advances in suspensions and hips in the past few years...but the HPs I have met have generally preferred to go prosthesis-free. While I, with my simple BK (and a lifelong case of the "clumsies") am really lousy at getting around with crutches, I know an awful lot of folks who are extraordinarily agile and even graceful on crutches. So do see what feels "natural" to you, and don't be afraid to change up your mobility aids as needed from day to day...living your life fully and actively is far more important than the tools you use in order to reach that goal.

I'm going to tell you a story, although I'll add right up front that it's actually NOT a good thing for an amputee to hop places. When I'm at a large family gathering, I'm generally the only amputee there...but at one joint birthday party for my grand-nieces, I noticed a fellow, about 30-ish, hopping along, chasing after the little kids and having a fine old time. It took me several seconds -- about as long as it took him to make his way from one side of the party space to the other -- to realize that he was hopping because he was one-legged. "Wow...not just another amp, but an above-knee amp!" I thought, and I went chugging over to meet him, tell him that I admired his hopping ability, and find out what his story was.

Turns out that he was a friend of a friend of the "birthday dad"...and an HP. He "normally" used crutches, but in the crush of the party crowd he just thought hopping would be less-complicated. Aside from the fact that we then sat down and discussed the conditions that led to our various amputations and how we dealt with assorted challenges, there was absolutely nothing out-of-the-ordinary about our conversation. Just two of the "grown-ups" at the kiddie party going through the buffet line, chatting about the kids and mutual acquaintances, complaining about our jobs...the usual stuff.

I hope that's somewhat reassuring for you...while you'll face more challenges than most amputees, life will go on and you'll be right in there living it! And we're here to answer any questions that arise as you adjust to your "new normal." :wink:

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Wow... what an awesome story to tell Cheryl.... good for you....

I on the other hand, can only say that the HP's I know of are women and are in the USA. I will say that Lenor Madruga has written a couple of books about her journey as a hemipelvectomy. Maybe some thing like would help... She has a website.....

http://www.rogueweb.com/lenor/about.html

You can check it out...

I most certainly wish you the best of luck and a fast pain free healing.... and one other thing... Take it one day at a time, sometimes, only one moment at a time. I was told later on, to keep a journal.. It would be perfect for you. To write your feelings now, pre surgery, and then later afterwards..... I bet a year from now, you will be surprised at things and about your feelings.....

I hope that you feel comfortable enough to ask any questions you have.... Surely someone on the forum will have an answer... They usually do....

Best of luck to you.....

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Thank you for the early responses- they are extremely reassuring and helpful to focus on the 'normality' that can continue in life post-amputation as so many of my own thoughts are focused on the things that will change or I will lose. Am already reading Lenor Madrgua's book but will check out the website. Have been thinking of a journal myself- has been a long journey with this cancer (8 and a half years now) and still a long way to go and a journal may help me take this next step.

Interested to hear people's experience of amputation surgery and recovery even if not HP (all the jargon is starting to creep in) as that is what I am trying to focus on. Get distracted and start to think of all the steps at once- prostheses, coming home, getting back to work- and need to remind myself to focus on one step (one day as you say, Higgy) at a time.

thanks for warm welcome.

steve

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Welcome Steve. Sorry you're having to join our club. Cheryl and Tammie have given you good advice. I know of a woman who had a HP as a child. She went on to become a doctor. She almost always wears a prosthesis. There is new technology our there to make walking easier for an HP.

Good luck on the surgery.

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Hi Steve,

Welcome to this group. You have a lot on your plate. The previous words encouraging you to take one moment at a time are so important. What your facing can be overwhelming if taken in all at once. The idea to keep a journal is really good. Pictures too. I didn't and at some points regret not do so. Keeping a balanced perspective helps a lot.

Best of luck.

Jane

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Thanks for the replies- strangely coincidental to your post Neal I already am a doctor (and plan on continuing being one post-op). If you have any links to this lady I would be interested but appreciate it sounds like some time ago,

steve

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Dr. Christine Skoski is a retired anesthesiologist from the LA area. I don't have any contact information on her. I've met her a number of times and she is very nice. I think she could give you some words of encouragement since she was discouraged following her amputation. You can try contacting her through the Amputee Coalition. She has a scholarship fund through them.

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Hi Steve, you won't recognize the name but bumped into you on another forum, am so glad the good folks on here are giving you some feedback and links which hopefully will be helpful to you.

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Hi, Steve -

It's taken me a few days to get down to searching for some resources for you (sorry about that!) but here's a little bit of info for you on just what can be accomplished after undergoing an HP:

http://nbclatino.com/2012/06/04/paralympic-fencer-reaches-for-the-gold-a-fourth-time/

Mario is actually on our member roster, but it's been years since he's checked in...I have sent him an e-mail asking him if he'd have the time to offer you some advice on embarking on life as an HP. That might not be possible for a while, as he's currently a member of the US Paralympic Team and headed to London to compete, but I'm hoping we can hook you up. I thought of Mario, not because he's some sort of "super-HP," but because he's been an HP for many years and has a very good idea of "what's out there" in the way of prosthetics, mobility aids, and coping strategies for the HP lifestyle.

Anyway, it's another starting point for you. :smile:

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I had forgotten about Mario. I know a guy on FB who is a very active HP. I'll try contacting him.

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Great information and links- have checked out both and the link to the doctor is on a very useful website dedicated to information about hemipelvectomy and disarticulation which is great. It is such a hard balance to get right- some of the info is overwhelming and quite shocking (the prosthetics look so incredibly bulky and hard to manage) but it is a reality I need to start to get my head around so the sooner the better.

Keep the info coming as it is all welcomed,

steve

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Just want you to know you have joined an elite group of friends...and will be there for you whenever you need to talk or ask questions that only amputees can help you with. I am so proud of this group....you are in the right forum for over the top information.

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I think Dr. Skoski has a website, Steve. Welcome and best of luck to you.

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I don't know if she does or not Marcia.....

Look out Steved, we may give you more than you want......Becoming an amp, you'll find there are no strangers here.!

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Look out Steved, we may give you more than you want......Becoming an amp, you'll find there are no strangers here.!

Yeah...Higgy's right. We're basically incredibly eager to offer help and advice to anyone having to face amputation. My personal opinion is that it's because so many of us went through our own amputations without ANY "amp-to-amp" advice...and there are just some things that an able-bodied person (AB--don't you just love all the acronyms?), even one who works extensively with amputees, simply doesn't think of because it's so far outside of their personal experience. I know that I tried like mad to find out all I could about amputation, prosthetics, mobility issues, etc.......but it took stumbling onto an online support site (not this one, not at first) and making contact with some experienced amps to get me on the right track.

Soooooo.....even though there may not be a great number of HPs involved, you're going to have a TON of support!

And, gang, I think that Neal and I may have hit on one possible solution: if you happen to know an active HP yourself, why not ask them if they'd mind being an "online mentor" to Steve?

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Thanks to you all- the support and advise here is great and not overwhelming. I have a tendency to try and deal with all aspects of a situation at once and it is that which is overwhelming. Trying to learn about the operation, recovery, prostheses, wheelchairs, rehabilitation, house adaptations, car adaptations, disability rights etc totally threw my head into a spin. you are right that the main benefit I am finding from interacting with people who have 'been there, done that' is that it focuses you on what you ned to think about NOW and provides a direction and grounding to the process of getting your head around it. I have used cancer forums for some time and similarly find them hugely useful and think via them I am useful to others (having had cancer on and off for 8 years I am one of the old timers on those sites).

Christina's website is great- probably the most comprehensive single site I have found but feels quite inactive (no changes since 2009) so not sure if it is still being updated. There are people to contact via that site but not sure how up to date the contacts are. Thanks to those who have provided a couple of fabulous contacts from here.

One issue I have witnessed on these sites is the feeling amongst some that they struggle with the perception that all amps are paralympians/ marathon runners/ climbing mountains when for many dealing with day to day issues or climbing a flight of stairs is a huge challenge. As I learn about this new world I am entering I don't necessarily want to begin with a distorted view of it and wonder whether there is a risk of that by having contact with Mario (paralympian) and Christina (clearly a high achieving remarkable woman working as an anaesthetist)- I guess it is also important for me to understand the full spectrum of people's experience of amputations and hemipelvectomies so welcome any contacts with people who can give a range of perspectives.

In truth all advise, ideas and support are welcomed and in time I hope I can be of use to others.

steve

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Hi again Steve

I have a few links for you regarding some of the organizations in the UK which might be helpful to you, you may have already contacted these but they may be helpful to someone else reading, I have also spoken to someone who knows another amp whose surgery was at HP level so if I get feedback from this person will send you a pm through this forum.

The Limbless Association http://www.limbless-association.org/ there is quite a bit of info on here that might be helpful. Also Limbcare http://www.limbcare.org/ , they also have a locked page on Facebook, there are lots of amputee pages on FB, though be aware that though most of us are authentic amps., others post who are not!

If you take the normal NHS route to prosthetics, you will probably be referred to transferred if you are an inpatient, from the hospital where you have your surgery to your local Disablement Services Centre (DSC) where you will, usually (depending on where you live) be looked after by a prosthetic rehab team. The Team will probably include a rehab consultant, prosthetist (they make the limbs), physio, OT and nurse. You are still fairly young, and hopefully I can say this without offending anyone older (as am getting older myself now) but as a youngish amputee you'll probably find yourself rehab-ing with much older people and some Centres are not always 'that' geared up to younger amps ... and am not sure if I should be saying this seeing as you have already posted that you are a doctor, but you may find, (again depending on where you go) that you have to be a bit 'pushey' in letting them know what your goals are in terms of walking, etc etc., I think prosthetics is these days getting much more geared up to the needs of younger amps., but sometimes especially if you are more complex, you do have to push and as you are already probably realizing, getting fitted and walking with a prosthesis is very much a process and takes time. Its good you are meeting your prosthetic team pre-op, ask all the questions and ask to look at the prostheses and perhaps meet up with up amps at the same level. Most DSC's have a user group ... some have newsletters, websites, do get-togethers, and perhaps have useful local information.

If things don't work out locally, you can go out of area for prosthetics, some people also access the private sector through NHS funding, though am imagining this can be slightly more difficult at the outset when you are needing rehab and recovering from surgery. Usually the route to access this is through your GP/PCT, as you will need NHS funding. Then there is of course the private route too.

A lot will depend on your existing living accommodation and the way the hospital you have the surgery in arranges things, but some new amps will go straight home after surgery and others might be transferred to a rehab ward in their local hospital. The Douglas Bader Centre at Roehampton, http://www.queenmary...bilitation.aspx is probably one of the very few hospitals that now does specialist amputee rehab., again, if you are thinking of this route then start talking to people now, before you have the surgery.

I read what you said earlier about prostheses looking bulky and hard to manage, and I think most people who don't wear prosthetics probably would think that, and often the first prosthesis is bulky and is hard to get to grips with, but thats where the rehab comes in and its all done in gentle stages so you gradually build up the strength to walk with the prosthesis, till eventually it just becomes automatic. I am not at your level, but in the past have worn some very bulky prostheses but at the time, because they fitted me well, they worked with me .... when prostheses fit well they work with you and don't feel as cumbersome as when they are not fitting, least thats how it works for me.

Wheelchairs. In hospital you will probably be given a hospital wheelchair and either at the rehab centre or local wheelchair centre be measured up for an NHS wheelchair. When you first get your prosthesis you have to break it in carefully, it is a process. So probably when you return home from hospital you may need a wheelchair or you might use crutches, a lot will depending on your living accommodation and also what your team recommends, you may be classed as a full time or part time wheelchair user and that may be the criteria for what you are allocated, in your case you might also be asking for special seating, though if you don't think it suits your needs then keep pushing for what does.

I am bilateral, so need a wheelchair when I am not wearing the prostheses and haven't found NHS wheelchairs very accessible in my home. In my area they have a wheelchair voucher scheme whereby the NHS will give you a certain amount of money towards you buying a private wheelchair, you can't just buy what you want, you have to be assessed for your needs and the purchase has to be approved, but for me this has been the best route, though it does take some time to go through and maybe something for you to think about at a later date. Generally though when looking at wheelchairs, try and work out when and where you are going to use it most, some are better inside and others better outside ... have a good look at all the wheelchair websites, mine for example has very tiny wheels at the front, brilliant for indoors and has a very small turning circle, but not so good on bumpy ground outside. Also wheelchair width and door widths, can sometimes be a problem, also whether or not you may need rails on stairs or in the bathroom.

In your home it might be a good idea to be looking around now and thinking about what is and what isn't accessible. Generally, I find the most important thing I need is space I need when using the wheelchair, so perhaps you can move furniture around to give you more accessibility. You can also hire things like temporary ramps and other bits of equipment that might help in the early days from your local Red Cross http://www.redcross.org.uk/ ... this is quite useful and might save spending money on things that, although are necessary in the early days, though as you progress and get more confident you will find different ways of doing things yourself. Though the rehab OT should also be able to help you with things like equipment and housing adaptations, should you need them.

Regards driving, again I am diff as drive with hand controls, but most single amps I know drive automatics, one a manual, but most auto's and I think it depends on what side your amptuation is as to whether you need the pedals changed, am sure someone on here will come on and advise on this but you can get info on driving from http://www.ricabilit...g.uk/index.aspx . There are also local driving assessment centres http://www.ricabilit..._list/mobility/ though you might find you don't need these. You will though have to let the DVLA and your insurance people know, and the DVLA sometimes have stipulations of what you can and can't drive. Not sure if you will be able to claim Disability Living Allowance but Motability http://motabilitycarscheme.co.uk/ might also be useful to you too.

I chuckled at your comment about many of us "struggling with the perception that all amps are paralympians/marathon runners/ climbing mountains" etc., which I think is very true for many of us, there are some who achieve these heights but most of us are just getting on with everyday life ... I only really have my own experiences to go by, and people at different levels may have different experiences etc., but life is good and is as you make it really, there are challenges and there are frustrations, sometimes you just have to alter the way you do things a bit.

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Wow, Ann...that's a grand overview of amp life in Britain! Thanks for filling in the "blanks" that those of us here in the US don't fully understand!

Steve, re: your comment about the public's perception of the "super-amps," I've found that the world tends to "see" two extremes in the way of amputees: we're either the "super-amps" to them, or we are completely helpless. What it seems to take folks a while to see is that the vast majority of us--just like all the rest of the world's general population--are everyday people living everyday lives. We have a full range of both abilities and "disabilities" and we just get on with living.

However, while ABs out there may find us confusing until they get to know us, every single amp out there--even the "super" ones--embarks on this life as someone who has found themselves feeling uncertain, overwhelmed, and to some degree "helpless." And most of us remember that feeling very, very well! A "successful" amputee is one who can get past that feeling and do everything in their power to get out there and live their normal life. And the "super-amps," by and large, understand that and can be a good resource for advice on reaching that mind-set. Your basic, everyday amp can also be a good resource. So can someone who is living at a level far "below" what you hope to achieve...if they're doing their absolute best with their abilities, just about anyone can give you insight on living fully with limitations.

So just get out there and grab all the helpful hands you encounter and you'll be fine! :biggrin:

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Thanks for the hugely informative email and the links which I will explore. I ahev taken some steps already as have a reduced use of my right leg because of my cancer. I have done the car and due to my access to DLA (was very straight forward as a cancer patient- I understand is more complex for many amps and due to get more complex with PIPs coming in) have an adapted motability car with left sided peddles (great flip up system so you flip up the left foot accelerator and a right one comes down so my wife can still drive it- actually still driving right footed as bit scared about using left foot to accelerate after years of clutching with the left foot- will take that leap soon) and had OT come to look at house. Will do a wet room for accessibility and a couple of ramps but wait and see how I am mobilising before doing more. Is two story place and not sure how good at getting up a flight pf stairs I will be on getting home so may need a stait lift I guess.

Great info on wheelchairs and understanding the system- helps me think of the right questions to ask as I go and meet people like the local DSC. Will ask about rehab and where would be best for me- hope to have the surgery locally as have a great team but may consider a specialsit rehab unit- my surgeoon wondered if he could access one of the miliatry ones which post-Murrison seem to be the centres of excellence now. Not too sure of the reality of achieving this though.

One hicough in contacting Christina Skoski is a wrote to ehr via the hphd website and got quite a difficult response accusing me of being a hoax. I find it hard to understand why (struggle to think why anyone would hoax about amputation but your comment about false posters on facebook confirms it happens- some people are strange!) and have written back to try and reassure her as I do think she may offer an interesting perspective of working as a doc as an amp. Marios contact has been great- he is a facinating chap!

Anyway thanks a lot for all the info and if people have more to add it is all very welcomed,

steve

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Hi Steve, I have just posted my introduction here somewhere so that will give you an idea of how I ended up with my amputation which I call a hindquarter amputation but I guess hemipelvectomy is the same / similar. I'll give you the good and the bad of my experience.

Firstly, the op itself is really nothing to fear. In fact, they get you setup with all the wires and stuff before you go into the operating room and when they give you the knockout drugs, WOW, it was fantastic! Hell, I even offered to have the other leg removed if they would knock me out like that again! When I awoke I felt fantastic, really well rested and as a bonus could feel or do nothing from the chest down. For someone that had been in pain on my right thigh / lower back for so many years this felt like heaven (see my introduction post).

The op is nothing to fear whatsoever. Post op I was stapled together with god knows how many staples, it looked like a big zipper on my side! These came out a week or so after the op and the only issue I had was a pooling of stale blood in my pelvis area that leaked from a small, unhealed opening from the area that was stapled. I had a bag stuck over the hole that collected this blood and actually used to open and drain the bag in the shower (not sure I should have but hey ho). :) Obviously this had to be changed every day or two anyway and the staff at Birmingham Royal Orthopaedic were absolutely fantastic. This blood drain was obviously bad at first, the bag would need to be emptied at least once per day initially but it did eventually slow down over time. The downside is that it was almost March (op was November last year) before it finally stopped so it was a bit of a nuisance.

The pain after the op is pretty considerable when getting into a wheelchair and mobilising but I refused to let this stop me going out for a smoke. I had to sit on a pillow, no way could I manage without that, especially since my backside was now misshapen (smaller on one side than the other). As soon as I returned from my wanders I was always going "Nurse, can I have an OxyNorm please". That's a morphine tablet. The pain is quite bearable though and it does lessen surprisingly quickly. Be prepared for upto a month in hospital after the op though. In my case I was in Birmingham for just over a fortnight before being transferred to Leeds, op was 11/11/11 (wow, never realised the date before) and I was released home on 2/12/11.

So that was the op. Now the bad bits. Aftercare, there is virtually none! Once released you are pretty much left to it. Fortunately for you, you have found a place to find things out before the op, I didn't have that option alas. Next problem is phantom pains. Now these are more of an annoyance than pain on an agony scale. You'll find that if you sit idle, unoccupied with a task that you experience what I can only describe as an electric shock or like someone trying to squeeze your 'foot' hard. You can feel exactly where it hurts, foot, calf, thigh etc. It's very annoying and if you sat watching me glaring at this PC screen but not really doing anything you would see me 'jump' in the wheelchair now and again. This is me getting a jolt in part of my leg!

Another downside is actually being able to sit down. I was lucky enough to get a very expensive cushion supplied with my wheelchair that has like teabag air modules inside five different compartments. I have managed to remove or add these teabags in the right areas so that I can actually sit comfortably because my backside is no longer totally symetrical. To give you an idea, I tried driving the car without the cushion and after 30 minutes of driving I was in too much pain to continue as I was only sat on one side of my bum. When I tried with the cushion I was actually able to make a 2.5 hour drive! :) That said, I'm laid down for 8 hours and mostly sat in my wheelchair for the other 16 hours. Your bum will ache / feel sore before long. Again, this takes time for your body to adapt. I can do the full day in the wheelchair quite comfortably now but I still have to change position occasionally and going to make a cup of tea is a good excuse to get up and stretch.

Another point to note is your bed. Ideally, you may be better asking for a hospital bed. I came home and had a monkey bar delivered for my kingsize double, I would be utterly lost without a monkey bar, even now. After a few days in the kingsize I decided that I needed the ability to be able to raise and lower the bed and stuff, my kingsize was too high and it proved very difficult to get in to / out of. Another major issue with this level of amputation is sleeping on the side where the leg has gone, it is incredibly difficult. So difficult in fact that I sleep almost solely on my left side (it was my right leg that was amputated). The downside to this is that your left shoulder aches almost constantly, or mine did until fairly recently, I think that too has now adapted. When you first start sleeping after the op it feels incredibly wierd. You are so used to the weight of the thigh of your now gone leg that it feels like the amputated leg is 'floating'. It really is odd. Worse still is if you try sleeping on the side of the amputation, that feels horrible, you feel like you've sunk into the bed as there's no thigh there. Worse still, because you're laid on all of those nerve endings it triggers the phantom pains big time! Not fun at all. I can now have an hour or so on that side before fully waking but this is only achieved by rolling over onto a pillow to sort of trick my other existing leg into thinking the thigh is still there. Again, this takes time and is a recent development for me.

Finally, driving. If it's your right leg you're losing then you'll be needing a left-foot accelerator. I have one fitted and this can be flipped up which in turn releases the right-foot pedal for my son to drive. Be warned that driving left-footed initially is very scary and daunting. I was an extremely confident driver prior to the operation but since then it has taken some time to get that confidence back and I'm still a way off. The biggest problem is if you turn the music up or allow yourself to be distracted in any way, you forget about the left foot thing. A few times now I have come very close to having a minor collision! It is now slowly becoming second nature but like everything else, it takes time.

On the benefits front you may well qualify for Disability Living Allowance and this can be claimed whether you work or not, PM me if I can help you more on that front although I suspect there will be plenty of guidance here anyway.

Oh and I'm also in the process of getting a prosthetic but trust me, this takes a lot of hospital visits (physio especially) and it is one big and heavy thing! You also will never be able to walk without crutches, it is more cosmetic than actually performing any real function alas. Any questions you have, fire away. :)

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