Jump to content
Heather Mills - Amputee Forum

joyv11

Members
  • Content Count

    11
  • Joined

  • Last visited

Community Reputation

0 Neutral

About joyv11

  • Rank
    Newbie

Profile Fields

  • Membership Type:
    Family Member/Friend of Amputee
  • Amputation Type:
    ??below knee
  • Amputation Date:
    27/4/4
  • Amputation Cause:
    Ewings sarcoma (bone cancer)
  1. Hello again everybody. Well, he got his new foot but we didn't get to see the pros that we normally see. We did see someone else though. When we asked (nicely) about other parts she was initially defensive but came round to guidiing us towards some alternatives. We have another appt for next week as she felt he needed a new cast taken for his socket as he can birl (turn) his leg round and round when it is fully on so hopefully that may make a bit of difference to the secureness of it. We asked about more flexibility but she said he was about 1and a 1/2 inches too short for a piece that would do that. ??? not sure what she meant but hubby seemed to understand. Sometimes wonder if we should go down the private route but wonder if we could sustain the cost. Does anyone have any ideas how much a private BK leg might cost thereabouts. Is there anywhere in Scotland or are they all in England? Thanks again for all the help Joyce
  2. My sons right (real) foot is a good couple of inches longer than his left prosthetic one. I have had to chase them up for a new on which hopefully we will get tomorrow. Fingers crossed. Joyce
  3. Wow Thanks for all your answers and advice. Makes me feel very humble that you took the time. Going tomorrow to see prosthetic person. The last time we saw his consultant we didn't even know that day that we were going to see him. We had gone thinking it was just a standard appointment and suddenly found ourselves in a room of 6-7 people. I was totally unprepared and didn't pursue anything as my hubby wasn't with me and we were papped in and out in minutes. Will have to learn more about the "bits" that go to make a leg. I couldn't even tell you what he has just now as he was just measured and given this limb which I would say must weigh at least 5-6 lbs as I was really surprised by the weight of it. Hhhhhmmmm informed choice, what happened there then? Ta Joyce :)
  4. Hi Elt and Lizzie thanks for getting back to me so quickly. Elt do you go to Westmarc or are you over East or North? My hubby is at the stage of going over our prosthetition to a superior. We have just had to wait nearly 2 month for a foot and when I phoned today (and yesterday with no answer) I was told it had "just arrived". His own foot is 81/2 and his artificial one a 6. I just feel that for a young lad who wants to be more active there has to be more out there. Thanks again
  5. My 14 year old son had bka 2 years ago. Since then he has been using a leg given to us by NHS limb fitting. It is heavy and not very flexible. We were told by physio dept that he should be able to get something lighter and flexible but when we spoke to prosthetics they started on about costs and budgets etc. He has just gone on a ski holdiay arranged by a charity called Katies Ski Tracks which takes disabled kids on holiday and he came back saying that other kids the same age as him had far superior legs from their NHS provider. Difference being we are going to a place in Scotland and the other kids stayed in England. We have an appointment later this week, can anyone advise makes/brands that we can ask about Thanks Joyce
  6. joyv11

    Alexander in Scotland

    Hi to everybody I hope you are all well. We have been offline for a while as the hard drive went, its still not fixed so I am on an old computer we have. Lost all my sites, can't get into my emails so sorry for not replying to folk (esp Debbie) I have not forgotten, just dont have the facility at the mo. Zander went to Westmarc last Monday but it was a waste of time as he still has a cast on. He had the tibia capped with his big toe bone and they put a cast on to protect it till it heals. This is supposed to stop the tibia growing any more. He has also restarted his chemo so will be getting that for another 6 month. We got the DLA and have also got a blue badge which makes getting about a lot easier. Again, hope you are all well. Love Joyce :D
  7. joyv11

    Make Josh`s Day

    B) Hi Debbie Going to get someting off to you from Scotland too. Joyce and Zander B) .
  8. joyv11

    Alexander in Scotland

    Hi Wendy and Debbie Thanks for your messages. Well Zander's friends came over and they had an o.k time. I could see that one wee boy (his bestest friend) was a tad uncomfortable at first but they were soon all having fun. The only thing was that because he does not have a prothesis yet they were limited to what they could do. He has also had a couple of days at school and the very young kids (5, 6) were so blunt...WHAT HAPPENED TO YOUR LEG!!!!. Zander just said he had an accident and they were happy with that. Anyhow, I will contact you Debbie and give you our email address as I am sure Zander really needs someone his own age to talk to right now. Too many adults mulling around him just now. I sowed him this site a few days ago and he had a laugh at some of the funny bits but also checked in at the phantom pain bit as that is a wee problem at times. Love and hugs Joyce :D
  9. joyv11

    Alexander in Scotland

    Thanks again for more replies. Well, we bit the bullet and phoned round three of his friends and they are coming today. We will be going to pizza hut at lunchtime so I hope it all goes well and his friends see that he is still the same boy. Luckily it is a wet day here so it will be inside play such as the ps2 etc and it won't be as if they want to go out and play football. Wendy I am so glad that you have recovered so well from your type of sarcoma, this gives me hope. Liliquoi, I will check out that sports site. Thanks for that one. Pam, I will keep chasing the DLA. Where I work my patients are getting every benefit going for mental illness and relatives get travelling expenses to visit them and everything. I am glad I am not at the desperate stage yet but all the travelling up and down to hosptals and the extras soon mount up. Sheila and Linda, thanks for your insight and support. It is not an easy time and although my workmates and friends often ask how things are I don't like to burden them too much with all thats happening. Lots of Love Joyce :)
  10. joyv11

    Alexander in Scotland

    Hello again Thank you for your welcoming replies, the board has a nice feel to it, I have used other forums as I myself was treated for cancer 2 years ago and I used support forums then too. They were pretty mixed tho' some good and some not so good. Debbie, once Alexander (or Zander as he likes to be called) has got his head round this I will try to get him to post some messages. Maureen, we have had a visit to Westmarc and that IS where we will be going so you never know we may get to meet some time. I will try the Limbless Assoc as you suggest. Having some bother with DLA as we applied for it in February and they sent a letter yesterday saying they still haven't reached a decision on DLA aaaarrrrggghhhh what evidence do they need to pay out this as they have had written stuff from oncologist and ortho surgeon. Don't even seem to be able to get a disabled badge for the car as you have to be in receipt of higher level DLA to qualify for that too, the wheels of the benefits system sure move slow and I am a novice to all this as we have never claimed for anything in our lives. Thanks to everyone elso for replying, it is nice to know you are not letting this hold you back. Alexander was/is a very active wee boy and was into snowboarding judo and football before all this happenned. I may be a tad paranoid but I have noticed that some of his friends have stopped calling, I don't know if it is because they know he is in hozzie a lot and they don't know when to call or whether their mums are discouraging them... maybe just paranoia on my part. Sorry for the long message, see you all soon Joyce
  11. joyv11

    Alexander in Scotland

    Hi to everyone, my first post. I am Alexander's mum. He is 12 in August and last Tuesday he had a below knee amp for ewings sarcoma which is a type of bone cancer. We are near Glasgow in Scotland. I have info from the Murray Foundation but if anyone can put me in touch with any other sources I would be very grateful. Wish you all well. Joyce
×