Post op Chondrosarcoma

Good morning Dave,

Just thought I'd say hello, see how you're doing.

1. Sharon

Hi, thanks for the message, not doing too bad at the moment having physio at roh and doing as many of the exercises at home that I can, just need a nice hydro pool building in the back garden, I've got some movement back in the upper arm, painful but can lift it about 45° on a good day so I'm pretty chuffed, I just have to be careful how I move it and have to use my left hand to place it on the table as can't lift it to the front very well. 

Anyway how's everything with yourself, how's the strength building going for you, I do hope it's helped things along 

Thats great news! Well done you! Great that you're getting some physio at the hospital too. I imagine that must help a lot.

I'm good thanks. Still doing the strengthening sessions which are helping. Small improvements but I'm told that it will take time from now. No magic results overnight. Trying to be motivated is a big thing for me at the moment but I'm hoping that now January is out of the way and Spring is around the corner that'll lift my spirits a bit.

Keep up the good work with your exercises. Hopefully you'll see even bigger improvement over the next couple of months

Hi, just thought I'd send you a note just to see how you're doing, hope all is well with you, Dave

Hi Dave, I'm good thanks. Still getting on with the exercises

 I've been in the gym and at the pool trying to mix it up a bit this week. I can't see any real progress at the moment but I think I mentioned before that I've been told that I won't see big differences from now. Just got to keep on trying to get stronger. 

How are you doing? Hopefully you're seeing some more progress since we last spoke.

I dont know if you'd be interested but I found a group on Facebook called the Bone Cancer Research Trust which I joined.

 They have a virtual coffee afternoon with people that have been diagnosed with all types of bone cancer. They just go online and chat, give information and tips on how to deal with things. It's for families too, to have a chat with someone if they need it.  Some people's stories are quite harrowing,  I won't lie, but they're a friendly group. They advised me to fill in a PIP form that I'd not heard of and pointed me in the right direction for applying for a blue badge. Dont know if it'd be something you'd be interested in but I thought I'd mention it.

Hope you're ok and haven't been affected by the storms

All the best 

Sharon

Sounds like you've got a good plan going there, I find the hydro pool is a great help, I have applied for pip, did it back in December but haven't heard anything back yet but I have been told it can take a few months for an assessment but I'm not holding my breath on getting it, can't drive my own car though and am thinking of getting an automatic and fitting a ball on the steering to help me and yes I have seen the Facebook group, is it the chondrosarcoma group that you have joined, we're in Birmingham so the winds haven't been too bad, no fence panels gone so all good

Dave 

Hi, ShB, I just wanted to say hello and offer you some support. My partner is currently undergoing treatment for bone marrow cancer and I felt the need to reach out and talk to people going through this kind of experience as he won't talk about it. Your post sounds very positive and I take great comfort from that. Take great care and keep safe. Chrissy x

I've not had access to a hydro pool. Everything was closed due to covid when I was having physio from the hospital, great that you've been able to get that and it's helping you.

Theres not a particular group to join in with The Bone Cancer Research Trust, they cover all aspects in the one group. The people I've been speaking to there said that the PIP assessment can take many months and like you, I don't think I'll be eligible. With your driving, do you think you will ever be able to get back to driving a regular car? If not, sounds like a good idea to change to an automatic with the adapted steering wheel if you're able. Get yourself some independence back. I was able to get back behind the wheel after about 4 months post op, it was a struggle at first but at least I felt I could do something for myself, even just to get away from the house on my own,  gave us all a bit of space.

Keep up the good work with your physio.

Best wishes

Sharon

Hi Chrissy,

Thanks for getting in touch. I don't know anything about the treatment that your partner is going through I'm afraid but am happy to chat. I am very lucky in the scheme of things since I've had the cancer removed and at present am considered Cancer free. I'm having quarterly checks at the moment to make sure there's no lung mets. Sometimes though I dont feel very lucky. The surgery has been life changing and it's been very challenging to get moving again. I've tried to stay positive and am improving but it's very hard to stay motivated since being discharged from the hospital physio team. 

What kind of treatment is it that your partner is having? How long is it that he's been diagnosed? Maybe he's trying to process it all before he can start talking about what he's going through. Is there a group or charity that specialises in supporting his specific diagnosis that could help you both? I found a Bone Cancer support group via Google who have been great to talk with. If there were something similar for you I'm sure they'd be very informative for you.

I wish you both well and if you need to chat about anything please drop me a message anytime

Take care xx

Hi hope you don’t mind me butting in . I hope you are recovering well. I have arthritis and have had shoulder pain for a few months , I have been getting physio with no improvement. Both GP and physio initially said no to X-ray but I now have an area on my shoulder which is sore to touch and increasing pain / ache down my arm. My physio mentioned speaking to her senior as it’s not getting any better and now this painful area ,she is querying an MRI or X-RAY. I am an ICU nurse and sometimes to much knowledge is a bad thing .Sorry for the long post but I just wondered what kind of symptoms you had and for how long? Thanks