Life with mesothelioma is never an easy road to travel. The community of meso warriors are all involved in one form of treatment or another. Decisions to be made on surgery or chemotherapy, then those who are doing well and haven't had treatment for years against those who just can't get the meso into a status of inactive. The one thing all of us have in common is that we just don't know what is going to happen next.
A friend of mine went through surgery a year ago, although she too had a rough journey, her lung didn't want to stick back to the ribs either and spent quite a long time in hospital with a tube in, (thankfully I came home with mine), but she is having problems with her breathing. The CT Scan isn't showing anything unusual but she feels herself that something is wrong. Her weight has dropped, which I told her would be expected. The weight loss doesn't seem to happen at the time of surgery but quite a few months to a year later, those lbs start falling. This is caused by trauma to the body, it takes the body a while before it picks up on this, the brain deals with the surgery first, then the pain etc but sometime along the line our body then goes "hey something happened to me" and hence we have weight loss. Had better write here this is my opinion only and gathered by only a few people I know who have had surgery including myself. But I am worried about her, and asked her to ask for a second opinion. CT Scan's can only show growth if it is over 3mm or the cut has happened in the right place, (the time the CT Scan takes it's snapshot). It only takes 1mm of meso to make us uncomfortable, I should know as I felt mine return in the beginning of 2010 and then my USA radiologist noticed it in the April, it was a lot bigger in the December when my UK radiologist mentioned it.
Then you hear of other friends who are trying different treatments or have catheters in place to drain the fluid that gathers in the pleura space. Mesothelioma makes pockets and it can be quite difficult for the catheters to do their work as the fluid can't drain the individual pockets. This in turn makes breathing hard again.
Many are currently going through chemo, the loss of hair sometimes can be distressing, my hair is fine and so when I brushed my hair or ran my hand through it and had loads of hair drop out it worried me, on our treatment we don't go bald but shed quite a lot.
Then the worry of if the chemotherapy will actually work, we know that Alimta (Pemetrexed) doesn't work for everyone. One of the Warriors will be using a different chemo this time (4th line) and I for on am eager to see if it works. Although my other friend has just finished his 4th line with a 3 chemical infusion and so far is inactive but didn't get the shrinkage which we all hope for.
I guess I am slightly worried, my scan was last Tuesday and although my oncologist is away I am hoping my gp will give me the results. I have had some changes, I have to hope this is something to do with age and not the meso. My worry is still this leg, what if the meso has grown and is now resting on another nerve? Also a few new tighter pains in those left ribs, but that could be to do with my fat belly, see we all live in hope when we have this cancer.
It's Monday already and I have a busy week ahead, having been out of the office for nearly 3 weeks, I did get in a couple of half days so tonight I will probably come home and crash on the sofa. I am having trouble with my eyes at the moment, they get tired looking at the screen but if I put on glasses I can't see as they are for distance, I guess I need an appointment, will be quite hard I guess to match my eyes as I don't need anything to read things on my desk or in my hand only the screen.
Have a good week everyone, don't forget to drop in on my warrior friends blogs and catch what they are up to.