Chondrosarcoma diagnosus

Hi Dave,

I'm sorry for your diagnosis. 

Your surgery sounds very much like mine. A reverse shoulder replacement.  Half the humerus taken and all muscle. 

I still have use of my elbow and hand which is a godsend as I'm right handed. I've had all the physio you could throw at me but I still have no reach at all so I've become left handed to everything other than writing. 

The first couple of days after the surgery were uncomfortable so relied heavily on codeine but that settles down quickly if you take it easy. I had to take codeine to go to bed every night for a year as I would have alot of pain at night but 21 months after the op an infection presented itself. We all think I got the infection in the op, it just took a long time to show itself. I was in Cyprus too which is another story.

My arm looked amazing once the scar faded after the initial op. You would never have seen anything had been done to it unless you looked closely. It was fantastic. Unfortunately,  I've had 4 infections in the arm and each time they take more skin and flesh. So now my shoulder looks really disfigured. I had skin taken from my back to try and put some skin on my shoulder as I had next to nothing left and its just even more scarred now. If I hadn't of had the infections my arm would look amazing but with all the ops I had to have afterwards I cant wear sleeceless tops as people stare too much.

Where are you having your op?

Have you still got treatment to do afterwards?

I wish you luck for the 1st Dec. The op is not as bad you think. Just make use of pain killers to help you getting mobile again. I was completely off of all pain killers, including paracetamol, by 4 days later.

• Nikki xxx

Yes it does sound very similar, you were one of only a couple i could find that'd had the opp on here regarding the shoulder and you were the closest in time frame ( 5 years) if you know what I mean. He did say it was rare. 

It's Such a shame that you got the infections as it sounds like the initial operation went well, I am concerned about the pain but as you and others have said  they know what they are doing and will look after me, its just the bone biopsy was well painful when I got home but codeine and paracetamol sorted that out,

No mention of any follow up treatment as he said chemo doesn't really touch it unless it's moved and all scans so far don't show it anywhere else, got another mri this week and will be having physio afterwards. 

I'm having it at the Royal Orthopaedic Hospital birmingham which thankfully is only about 15 mins drive from home so for the first time in a while I'm really happy for where we live.

I'll let you know how things go and I'm so grateful that you replied. 

Thank You, your a star, all the best to you, Dave 

Hi dave

You are very welcome.

Yes, it is rate but all you will hear now is of bone cancer. Especially the poor little kids. 

I had a lot of chemo and radiotherapy as I left it very late going to the gp with my lump. My scans showed no spread, thank god, but they wanted to be sure. I was all for it. Anything to make sure it had gone for good.

I read 10% of people get an infection from their op. I suppose I was just one of the unlucky ones there. I'm still sitting waiting to make sure the most recent op for it has got rid of it. There's no tears for it, you just have to wait and see if one presents itself.

I had my op at RNOH  stanmore. A bit of a drive but never mind. When I went to Basildon hospital with my first infection and the orthopaedic surgeon asked what cancer I had and i said dedifferentiated chondrosarcoma his eyebrows nearly hit the ceiling lol. I reckon I was probably the first he'd met with it. 

The very best of luck with the op. The pain is uncomfortable but not unbearable. I was pressing the morphine button all night to help me to sleep and in the morning they'd noticed the button hadn't been plugged in, lol, so I did fine with none. So I think you'll be fine. 

Let me know how it all goes. I will be thinking of you. 

• Nikki

I know I shouldn't but that comment you made about keep pressing the button through the night to keep the pain at bay only to be told that it hadn't been plugged in made me laugh but probably didn't you at the time, I can just imagine the look you'd have given them along with a few comments under your breath. 

Haha. I know.

I only kept pressing it because my friend (who has had dome major surgery in her time) said to me 'enjoy the morphine '. So when I knew I'd got some I thought let's make good use of this. Haha.

Tbh, there was pain, but its not as bad as you think its going to be.  I just used paracetamol and codeine.  When I knew the morphine hadn't been hooked up I told them not to bother with it. 

I'm sure you're going to be just fine. 

If they leave you with some muscle you will regain some,  if not alot,  of use of your arm. My cancer was inside and outside of the bone so I had everything taken, thats why I have no use of it even after extensive physio. But you make do. Like I said, I've become left handed except for writing so I get by just fine. 

Take care. 

Best of luck for the op.

Message me when you can afterwards 

Nikki

Hi nikki

Hope all is well, I've had the opp and all appears to have gone well, 5th day in hospital today, the pain the day after the opp came on gradually as the nerve blockers wore off and my numb fingers started coming back to life, managed a little physio on the second day but too painful on the third, really looking after me well and couldn't ask for any better,

Very nervous when taking my arm in and out of the sling but getting more confident and its great to have a quick wash in the bathroom, it took a while but managed to change my T shirt, should be out tomorrow so once home I can get into my own routine,

Thanks again for all your advice Dave. 

Hi Dave 

I'm so pleased all went well.  RNOH really know their stuff dont they.

Everything you said us exactly how I remember my first week so everything you're going through is normal. 

Take it slow when you're home. I used to take pain killers just b4 going to bed. It helped alot to get a good night's rest.

Take care Dave.  Again, I'm so so pleased all went well. 

Now you can relax and enjoy Xmas. 

Take care

Nikki