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Heather Mills - Amputee Forum


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About steved

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  1. steved


    I had the privelege of being able to go to a few things and was amazing. Saw judo and GB play football at Wembley which was great but quite early on before the real hype got going. Then went to the athletics final last friday and saw Mo FArrah win the 5000m and the world record 4X100m relay with Bolt and Blake and have to say was the most impacting sporting event I have ever witnessed. Went with my wife and two kids (5 and 8) and so pleased to be able to creat those memories for our family. Have to also commend the organisers for making it very disabled access friendly- free parking on site with Blue Badge, very helpful volunteers and everything run incredibly well. The atmosphere was the most amazing aspect though with the noise in the stadium being almost overwhelming at times. Been put in contact with a chap with a hemipelvectomy due to particiapte in the wheelchair fencing too which has been great (as I am due an HP mid-September- pushed back a month due to surgeon's holidays!). Remarkable chap for swhom sports has played a central role in his recovery. Looking forward to seeing some of that too. Britain has really shown its true self and I feel proud of being part of that (as a Kiwi in Britain for last 15 years is one of teh few times I have felt tht British patriotism- quite strange to experience, but really very nice!) steve
  2. steved

    New to forum

    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
  3. steved

    New to site

    Welcome Charlotte- strangley I too am 39 and live in Devon. I am not yet an amputee but am due a hemipelvectomy (ery high amputation) in the next month so will be joining the club just behind you. Would be interested of you experience of our local services- I will mainly be using Exeter, not sure where you are based. think navigating services to get good treatments seem important especially in this early phase of getting the leg fitted right and learning to use it as well as accessing other supports. I had been told there is a Devon Amputee Support Group but not accesssed them myself. Do feel free to message me directly as others here may not be so interested in the nitty gritty of Devon life! steve
  4. steved

    Newbie facing hemipelvectomy

    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
  5. steved

    Newbie facing hemipelvectomy

    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
  6. steved

    Newbie facing hemipelvectomy

    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
  7. I am probably having a hemipelvectomy in August to deal with a recurrence of bowel cancer. I appreciate it is a fairly rare op but just looking to see if there is anyone out there with knowledge about this op and the subsequent recovery and disability. I would really love to hear from anyone who has been through anything similar to understand what I am facing to help me prepare for the op and its consequences. My big issue is mobility postop as I am very active and enjoy a lot of sprt and have two young children. I understnad a lot of people with HPs opt to use crutches and wheelchairs at times as well as prostheses. I know little about the prostheses and am due to meet with the mobility team pre-op to discuss things but almost fgeel I don't even know enough to know what questions I should be asking. Any adivse, suggestions, ideas etc are welcomed, steve
  8. steved

    Newbie facing hemipelvectomy

    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
  9. steved

    Newbie facing hemipelvectomy

    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
  10. 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