Chondrosarcoma and scapulectomy

Sorry My sarcoma is seated in my womb so I can't help you with your question. Just wanted to let you know I am here and listening. I have my CTscan this morning so will find out about spread hopefully next week.  

Hi! Thank you for your reply. Before diagnosis I didn't even heard the word sarcoma. I have joined few FB groups but looks like with this cancer is so hard to find someone with same diagnosis and treatment... Also seeing other people's journey, I feel like I shouldn't be complaining as I was lucky to be diagnosed and operated quickly with no spread... 

I hope you will get your CT results quickly and I keep fingers crossed for clear scan

Hi Kuzz, do you have a sarcoma nurse specialist? After my first consultation my doctor introduced his sarcoma nurse. She was very helpful and gave me lots of advice along with her card and telephone number. I have spoken to her on the phone since and she has either given me advice or asked the consultant to ring me. If there is someone similar at your hospital you could ask her if there was any kind of support available. Deb

Hi kuzz, 

Just wondering how it's going for you, I've got a week's intensive physio starting on the 24th of this month, mine was chondrosarcoma stage 2 of the right humerus ( upper arm and shoulder joint) operation was on 1st December when they removed 14cm of bone along with rotary cuff and put me a reverse shoulder replacement in.

Ive had the same issue as you trying to find someone with the same or similar diagnosis, I managed to find a post which was 5yrs old and luckily they are still on here which was helpful for me. 

How's your sleep pattern and are you still taking anything to keep the pain at bay, tell me all about it and how your coping, the good and the bad. 

All the best, Dave

Hi Dave!

22nd I have another appointment with my surgeon to talk when exactly I can start my physiotherapy so nothing really changed since my post here. I'm so sorry to hear you had to go through this as well.  

I am still on painkiller but only one type, long lasting for nerve pain. Sleep pattern was fine for most of the time but I'm struggling recently, since last week I have a trouble with falling asleep and also I wake up in the middle of the night sometimes and can't fall asleep again. 

I think the biggest problem is that I feel in-between most of the time. I recovered very quickly and very well from surgery, I'm not in much pain, I can use my wrist and arm from elbow down to some point and I had no chemo or radio therapy like most people with cancer. I have been diagnosed very quickly so I only had about 3 weeks of stress waiting for diagnosis not knowing what's coming when for other people it was going on for months. I know how lucky I am but this only makes me feel like I don't fit within this community, that comparing to others experiences mine is like nothing.... On the other hand the rest of the people around me, my friends and family, they don't understand me. They trying, but all I can hear is that every thing will be all right. Like I have a broken bone that will heal in couple of months... I just feel like I don't fit anywhere anymore... 

Hi Guys hope you don't mind my jumping into your thread.  So sorry to hear your are feeling so understandably crappy. I think I can empathise I had bilateral mastectomy 8 years ago and will now loose all my reproductive organs as well, I feel like I have nothing to define me as a woman.  All the hype about trans-people is really upsetting too you know what make a woman a woman,  phew what a predicament we are in.   I suspect tho that we are 'handling' all this 's**t' means that we are pretty amazing people, at least I think you guys are...

Nanci

Hiya 

I read your reply and thought you'd read my mind , folk have said to me oh so it's just like having a hip operation but in your shoulder, duhhh, a friend of ours said oh yh you'll be fine someone she knows had a shoulder operation and they just do keyhole surgery and also it can't be that bad if your not having chemotherapy,

I tried explaining half a dozen times to them, chemo has little effect ( or is it affect) on this type of cancer and no it didn't show up in my blood tests but guess what, yh it is cancer and yes we have got to have the bone removed, not re coated or shaved the only option is removed, removed, removed.

It just shows its up to us to educate our friends that this cancer is one of the rare ones, even the consultant seemed excited when he told me.

The upper arm I'm not allowed to use at all and it must be kept in the sling and pulled up tight which is doing my head in, I can do gentle exercise of the lower arm but just taking it easy.

My sleep sounds the same as yours, get tired and go to bed about an hour later I can't sleep so I get up and end up staying up for a god few hours and return back to bed about 4 in the morning, never mind I'm sure it will work itself out, last week I did try to fight sleeping during the day which made it worse that night so I've decided to just go with the flow, if I sleep in the day I sleep in the day.

Another thing for me as I live in England is that I normally pay for my prescriptions but being diagnosed with cancer I now get free prescriptions after filling in a form from the hospital, also depending on how this cancer has affected us we may be able to apply for personal independence payments which isn't means tested, may be worth checking out but not sure where your from but worth a shot if your in the UK. 

Hi nanci 

You sound like an hero to me and I bet you've got a personality that could change the world 

You've had all this s**t sent in your direction and I bet all you want to do is give out a big long sigh,( just because) , in fact I've just done it for you.. 

You've also gotta think how far you've gone on your journey and the fact that you can talk about it which I think is fantastic. Keep strong which I'm certain you will and I'm always here to try and understand as I think that is all we can do as we only truly know ourselves how we feel deep down, ( I reacon that last bit could be a famous quote), joking apart a cuppa solves so much, I'm having one now, time for you to do the same. 

All the best Dave 

More like a pot I love my tea