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Heather Mills - Amputee Forum
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Hi folks, just arrived here so figured I would tell you a bit about myself. I'm a 45 year old guy from Leeds in the UK and am new to this whole amputee thing. I had a hindquarter amputation (technical term) which means my whole right leg and a fair chunk of my pelvis due to chondrosarcoma (bone cancer). How did I end up here, well it was a bit of a rollercoaster...

I had been suffering leg pains since 2002 with the first recorded visit to the doctor about this in early 2004. Over the years this pain got much worse and more persistent, no amount of painkillers seemed to help and I had to take amitriptylene to help me sleep on a night. The prescribed painkillers and Amitriptylene doses went up and up until the last 18 months or so when the pain really peaked. I walked with a permanent limp and even had to have sicknotes for 3 months on two seperate occasions, such was the pain. Alas my doctor just kept sending me for physio and despite my continued protestations that physio was actually making it worse this continued. Indeed, just days before I went on holiday I had a doctors appointment and a physio appointment and I said to both that my leg had swollen. Both looked and decided that I was imagining it. I knew it was swollen compared to the other leg. Anyway, a few days after this I had a holiday booked.....

So, 28/9/11 I went for a fortnights fun and frolicks to Cyprus. Apart from the pain in the leg all was well and I could dampen the pain with the all-inclusive drinks. On the day before I was due to fly home I'd had a fair amount of cocktails and decided to go on a helterskelter waterslide. Down I went, landed in the pool and despite swimming as best I could I didn't seem to be getting anywhere. I was pretty boozed up so didn't panic at all. Next thing, the lifeguards are in and drag me out. They stand me up, I put my right leg forward and bang, down I went. So they tried again, same result. Ambulance came and took me off to a clinic / hospital facility where I had an xray and it was discovered that my femur had broken. As the effects of alcohol wore off the pain kicked in and that really was no fun!

So, after several days of being hospitalised I was sent to Larnaca hospital for an MRI. This revealed something very wrong going on in the femur area though I was never actually fully told at the time what was happening. They also kept me pumped up on drugs and stuff, such was the pain. I'll never forget the day I totally tripped out and accused the hospital staff of being kidnappers and tried to make my escape sorta crawling across the floor! Anyway, it was decided that I needed to be sent home for treatment and after 10 days in hospital there I was put on a flight home with a nurse to transport me, I was laid on a stretcher above the last three rows of seats at the rear of the plane (seats had backs folded down).

From Manchester airport I was taken to St James in Leeds who decided they didn't have a bed for me so I was instead taken to Leeds General Infirmary. Having been awake since 6am, travelling since 10am and finally put in a bed at 2.30am I was somewhat knackered! Anyway, after 10 days at Leeds General Infirmary they decided that I needed to go for specialist treatment at Birmingham Royal Orthopaedic Hospital so I was taken there. Whilst awaiting a biopsy I got talking to the guy in the next bed who had a similar problem and we both discussed the possibility of losing the leg. We both agreed that that would be preferable to losing our life and we would do it! Well, he had his biopsy first and being in the bed next to him I heard the surgeon giving him the result. Basically, the cancer had entered the base of his spine and there was nothing they could do. :( Off he went home.

I had my biopsy on the 5th of November (yup, bonfire night) and got the results a few days later. "I'm afraid you have a chondrosarcoma grade 3, if we don't amputate then it will spread to the rest of your body". I was gutted. However, after 10 minutes of tears I reminded myself of what I had said earlier and how much worse it could have been and came to terms with my 'loss'. So on the 11th of November I had the op. In the recovery room after I came around and thought "this feels absolutely supurb!". I had been given an epidural. God it felt good, for the first time in years I was in no pain at all, it felt fantastic in fact! Alas it didn't last long as they had to withdraw the epidural slowly and sure enough the pain of the op soon became apparent. I didn't however allow this to beat me! Just a few days after the op I was in a wheelchair and going some distance to get outdoors, wow it felt good, some freedom at last! And I could smoke again (silly boy)!!!

I was transferred to St James Hospital towards the end of November and on the 2nd of December I was brought for a home visit with the occupational therapist to see what modifications were necessary in my house. The OT's (there were two actually) witnessed how easily I got around on one leg, even getting up and downstairs. They had a workman arrive whilst I was there to add some grab rails in the bathroom, a second banister rail and things like that. It felt so good to see home again, even now it makes my eyes water thinking of that moment. I had left home for a 2 week holiday and here I was over 2 months later and minus a leg seeing my home once again. The OT's decided that I was capable of managing with the help of my son and after giving them some puppy eyes agreed to discharge me from hospital that day!

So, that was my rollercoaster! Since then I've got a car with an accelerator pedal on the left (it flips up and the right one drops for my son to drive it normally), I've had a stairlift fitted and my bathroom is now a lovely wetroom with a seat bolted to the wall for me. I cannot begin to explain the difference all of these have made to my life. On another note, solicitors are currently persuing a case against my (now ex) doctor for medical negligence.

Apologies for the loooong, boring post but there you have it. Cheers, Dave.

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Welcome to the forum, Dave. Sounds like you are a doing well and have a great attitude.

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Welcome to the forum, Dave. Sounds like you are a doing well and have a great attitude.

Thanks Marcia. I had little choice in the way things ended up but ultimately decided that it was pointless going on a downer about it, it's done and I have to adapt. I either get on with it or go into full blown depression and give up on life. That is not an option to me, I have a son who's 26 and a 21 year old daughter who is pregnant with my as yet unborn grandson. Not sure on the grandad (or grandpa) title at 45 years old but I certainly don't have time to think of the worst in my life. :)

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Hi, Dave, and welcome to our little "family!" It does sound like you've been on a major roller-coaster ride...but it also sounds like you've come to the right decision (indeed, the only good decision you could make) about how to live with an amputation. The fact that you were in pain for so long, and had been through such an ordeal in getting a diagnosis may actually have inadvertently helped you in giving you the time to understand that life one-legged is indeed better than no life at all.

I'm speaking from experience, here. My own roller-coaster ride was much shorter than yours (only about three years total with two years focused on the leg I ended up losing), and my simple little left-below-knee was a stroll in the park compared to your surgery...but it was enough to convince me that amputating was the right choice and that I would be able to deal with it.

So go ahead and settle in here and poke around on the forums. Ask questions, offer advice, whatever...it can be a good thing just to be able to "talk" to folks who "get" your situation and don't find it either "disastrously horrible" or--even more frustrating--"inspiring" :cool: !

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Welcome to the forum Dave, I think we have been in contact before, glad you found us.

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Welcome Dave. Life is what you make of it and it sounds like you're making it just fine.

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Thanks for the warm introduction guys (and gals). :) Cherylm, you are indeed correct. I had been in so much pain for such a long time that finally getting rid of that constant pain was actually a huge relief. The op itself has left some pain in the form of 'phantom pains' but these are much more manageable than the constant bad back and leg, I was popping pills like sweets! The biggest regret is that the surgeon said that had the cancer been detected before the bone finally snapped it was likely they may have been able to save the leg, when it broke it just spread the cancer to the point where the leg had to go. At least when I say "The holiday cost me an arm and a leg" I'm actually telling half the truth. :)

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  • Welcome to the forum- I am actually pre-operative but looking at a hemipelvectomy (similar to a hindquarter but probably taking more of the hip bone) for bowel cancer, so interested to read your story and great to hear your positibe attitude which feels like 90% of the struggle. Would be interested to hear how you are getting on with mobility and whether they have talked about prostheses with you. I am 39 and generally very active with young children so am keen to look at how best to rehab and maintain mobility postop. You sound like you have just got on with it which is probably the best appraoch in truth. I am in the position of being able to plan in advance I guess and wonder if there is any advise about what you would do in advance (home modifications/ mobility etc) if you had known this was gonig to happen.

Hope all continues to go well for you,

steve

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Hi Steve, I'll reply in more detail to your PM but according to my physio mine too was a HP op, I guess I never really saw the technical term for it so just assumed. :)

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OK...this is my "moderator" self speaking here, so forgive me if it sounds "odd" or even "cruel"...but I'm so glad that we have two new members looking at recovery from an HP! Not that I want either of you fellows to have to go through the operation and recovery...but it's so good that you'll have each other to share the process, work out coping strategies, appreciate accomplishments, advise each other on "what works" or "what doesn't"...and just be able to have someone to consult who is actually going through the same thing at the same time! When you're looking at such a severe operation, it's sometimes very hard to find someone who can fully relate to the situation. So take advantage of this, guys...it's a good thing!

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Cheers Cheryl, that's much appreciated and yes, we do seem to share something of a rarity here I guess. :) I don't know what sort of pain Steve is in with his leg at the moment but for me personally it was something of a relief to lose the painful leg. Sure, the post-op pains weren't exactly great but as I recovered it was nice to lose that constant, often agonising pain that I was in so it's not all bad. Adapting to life on one leg wasn't quite as bad as I thought it would be either since my one good leg had been doing pretty much all of the work of both legs so the transition was a lot easier than I imagined. Ultimately if it's a life saver then it's got to be done and you just have to adapt and get on with it, depression is not an option! :)

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Welcome - enjoy all the lovely people here!

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Hi Steve & Dave,

Welcome to you both. It sounds like you both have good attitudes which helps so much.

My issue is much less involved than you two as I had a bum knee and not a hip/pelvis leg problem. But I can so well relate to the feeling that now - post surgury, recovery, pt etc- life can move on. The chronic huge pain of a failing body part takes over your life. Without the pain you can live again!

My amp timing was mine to choose. To not do an amp at all wasn't a choice. I've had some folks look at me like I'm nuts to have had the operation. It is unfortunate that most folks who haven't themselves expierenced horrible chronic pain, infections etc etc can't understand our rational. I will say my close friends, who saw how I existed for 6 years, understood very well, and were very supporitive.

Good luck going forward to you both.

Jane

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Thank you Jane and I can fully sympathise with your rationale. It's only when you've been in constant pain for such a long, long time that the action required to be done with it comes as something of a relief. I'm sure we all wish we had all of our limbs and sure, my amputation was pretty drastic but I don't miss the constant pain I was in before. As you said, I'm sure that many wouldn't understand our reasoning if amputation is actually an option rather than absolutely necessary but it's only when you've suffered constant pain for such a long time that you can understand why it's often an easily made decision. :)

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