ChrisC's blog

MRI Scan

2009-09-19T12:48:10Z

Hi All

Going for my 1st mri scan on thursday and I am very nervous about it. The consultant damaged my jugular bulb in the op and had to finish early so does not think he has all the tumour. It will need another op, hope not.

Chris C

Chrondosarcoma

2009-06-26T19:46:34Z

Hi Everyone Just to let you know I had my op 2 weeks ago for the removal of the tumour attached to my corited and jugular artery. I have had a hariy time of it. The op should have been for 4 hours and ended up 8 1/2. The docs harvested some fat from my stomach to pack into the hole in my skull, whilst in recovery I developed a bool clot. A decision had to make where it was, my head or my stomach. My bllod pressure was sky high, the doc decided to go for the stomach and thank goodness that was where it was. Another 4 hr op. I was away with the fairies for 3 days. My hb levels were rock bottom and I need a transfusion. Fifteen minutes into the transfusion I had a severe reaction to it. Violently sick and a rash. I had to be stopped immediately. You can imagine my energy levels are really low. But hey it could have been so much worse. My family were scared to death. Of course for a while I knew none of this. I see the consultant next week and hope & pray he managed to get it all. I want to thank you all for your kind words and prayers which helped me so much. Love Chris C

Chondrosarcoma

2009-06-01T21:19:07Z

Bit jittery this week as I go in for my op next Tuesday to try to remove the tumour from the artery. I have found out that this cancer responds to something called a proton blaster, or proton therapy. Guess where, the good old USA. Why have we not got at least 1 machine here? It is very successful. Another method, which I have not been told about by my consultant is Gamma Knife, again successful. There is one in Sheffield. Is this the post code lottery we are told about? We should be lobbying our MP's right now for one. Without sites like this I do not know what I would have done as very little is known about this tumour. Has anyone had this treatment here? Chris C

Date for op

2009-05-21T16:02:25Z

Hi Fairly new to this but have my date for the op to try to remove some of the tumour from the artery. Found out today Chrondosarcoma does not respond to chemo or radiotherepy. Feel so alone, know one seems to have heard of it in this place. My gp is doom & gloom. Not a good way to go into an op. Can't stop crying, worrying about the family etc. Cannot find any info as the consultant has had to research world wide. So difficult. ChrisC

Messages

2009-05-19T22:06:13Z

Hi Me again, I was sending a reply to somebody but got interupted, had to close down and now cannot find my original message, any clues on how to retrieve them? ChrisC

Where to begin?

2009-05-13T10:33:10Z

Hi There is not much information out there for a tumour attached to the corited artery. How do I know who is the best to deal with this. My GP sent me to a ENT consultant but who is to say he is the best. He was very blase at the only meeting to discuss what he had found. I have 1 million questions and have had to ask him to see me again. Should I just keep the faith? My faimly and I are demented. It is the not knowing. Any advice out there? Chris