Post op Chondrosarcoma

Just wanted to reach out and say hello. I was diagnosed with chondrosarcoma last October and in January this year had a Proximal femoral replacement and am now in recovery and rehabilitation.  Wondering if there is anyone else in the community going through similar challenges.

Thank you for reading my message

  • Hi . Just answered your other post, hopefully the members here will be along soon to chat. You could also read some of the older threads and reply to any of them. There's no etiquette as such here, we're all here to support each other and make this journey easier.

    Hugs, B xx


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  • Hi shb, 

    Just giving you a shout to see how your doing and hope its all going as planned, I've not yet had my surgery, I was told  a couple of week ago that I'd got chondrosarcoma in my right proximal humerus (upper arm  and shoulder joint) so just waiting for a date on the surgery,

    I'm guessing like me you had never heard of it before but am slowly becoming an expert.

    All the best dave 

  • Hi Dave, Thanks for getting in touch, it's felt a bit lonely here for a while!.

    I'm recovering well thanks, although its not going quick enough for my liking! I've found out a couple of weeks ago that there's a good chance I'll always need a walking stick to get around and that I'll always have a limp. I've got just over a year to get to the best I'm going to be so I'm going to do my damndest to try to get back to the way I was.

    I hope you get your surgery soon, have they told you exactly what they'll be taking out and putting back in place? How long you'll be in for and whether you'll get a physio programme straight away? Have you had chest xrays to make sure you're clear?  It was all very quick for me and its taken time to actually come to terms with it all. I still don't really think I have. Obviously, on the one hand thank god they found it and took it all away but on the other hand I feel like I've been in a dream for year.

    I know its a different operation but if I can answer any questions just drop me a message.  Thanks again for getting in touch. Let me know how you're doing.

  • Hi, yes I've had xrays, ct and mri and they can't see it anywhere else so that's good, it was Sept when I was told something wasn't right with an xray I had at A+E after pulling my shoulder on the stairs, good job I slipped,

    Part of the humerus and shoulder joint needs to be removed but not sure how much yet, I've got another consultation at the end of the week so I'm sure they'll give me the full details and how much of the bone they are going to remove. 

    How was the pain for you after your surgery and how is it now 

    All the best Dave 

  • Glad to hear that all your scans are clear.

    The pain after surgery was kept under control brilliantly. I had a button to administer morphine as and when I needed it. To be honest tge first couple of days are a bit of a blur but that's because of the drugs. I did start to get very itchy skin after a day or so and had to have a strong antihistamine that helped to blur the whole thing too. After that it was Di hydracodeine, then dropped to Co codomal then finally just paracetamol.  I dont really have pain as such now, it's just a soreness.  Difficult to lay on that side still but it's improving all the time.

    Hope you get on alright at your next appointment.  Drop me a message if you get a moment.  

    All the best to you Slight smile

  • Just thought I'd say hi,  See how you're doing.  Have you got a date for your surgery yet?

    Best wishes

  • Hello, I have got my date for the surgery which is the 1st of december, they have told me that they will be removing about 12cm and fitting a reverse shoulder replacement so will be in for a few days.

    got Al the Christmas Dec's out of the loft as I don't think I'll be up to climbing into the loft for a while and also just re painted the stairs, all the jobs I put off which weren't that important all of a sudden are.

    I must say I do love Christmas and I am looking forward to coming home and having a Mince pie and a glass of sherry, you can probably tell by the way I'm going on that I'm a little anxious but I'm sure it'll  all be good.

    Hope your feeling OK and  thanks for the message it means a lot , Dave 

  • So pleased for you that you've got your surgery date. Sounds like a similar amount of bone you're having removed as me. It is absolutely amazing what they can do. Might sound a bit weird but I asked to have a copy of the xrays before and after surgery which they allowed me to have. It really helped me to make sense of all that was and is happening. We're all different so it might not be something that you would find helpful. Just don't be frightened to ask if you think it might help you. It's only natural to feel anxious in my opinion, even scared. The op is one thing,  then you'll be thinking how is it going to be after. Just take it one day at a time. After my surgery I couldn't move much at all but once they start you on the physio you'll be amazed at how quickly you can move again. 

    Well done for getting all the jobs done before you go in, at least when you're home you'll be happy to sit around and recover in comfort!

    I too love Christmas and am looking forward to a sherry or two to celebrate this year!!

    I'm going to see a Strength and Conditioning coach tomorrow, hoping that they'll be able to help me learn to walk without such a pronounced limp. The hospital physios have given me the ok to go ahead. I've been discharged from the hospital physio but am desperate to improve from the point I'm at now.

    I wish you all the very best for your surgery and if you're happy for me to get in touch I'd like to see how you're doing. In the meantime feel free to message me at any time. 

    All the best, take care

    Sharon

  • Hi Dave, just thought I'd say hello see how you're doing. Hopefully you're back home by now enjoying those mince pies, I'm guessing the sherry might be on hold at the moment, you might still be on the heavy duty painkillers! I hope the surgery went well and that they've managed to get it all and also that you're coping OK. I mentioned before that I've been to a strength and conditioning coach. She's got me doing a lot of different exercises and I can definitely feel that it's making me stronger. Only time will tell.

    I'll take this opportunity to wish you a Merry Christmas and all the best for the New Year.

    Take care

    Best wishes

    Sharon

  • Hi Sharon,

    Really pleased your new exercises are making a difference, everything went really well for me, they let me out on the sixth day, I'm just doing gentle lower arm exercises guided by my good arm which is for six weeks, other then that it has to stay in the sling which in turn is kept secure by another strap around my waist, after six weeks they will then start physio on the upper arm,. I've mamaged apart from on 2 occasions to keep off the morphine and down to 1 codeine just before bedtime and 1 mid morning along with a couple of paracetamol here and there but not too bad, seem to be sleeping at the drop of a hat all the time.

    Keeping off the drinks but it's very tempting, might just have a glass Christmas eve, obviously if I stop the codeine. 

    Had a call yesterday from the specialist nurse to tell me that it was a good clean margin from the lab so very promising.

    Hope all carries on in the right direction for you and I too wish you a happy Christmas with a really great new year ahead.

    All the very best, Dave