I can't believe it, not only have I spoken to a new diagnosed person this week but my one of my best friend's brother has just been diagnosed. We had hoped it would be just fluid only but when I went to see him today and asked about tumours etc he didn't think he had any. He later said his pleura was thickened and that's why they did a VAT. Why don't they explain that the thickening is the tumour?
Seeing it from the otherside is so different to dealing with this disease yourself. I now have a different perspective, yes I have emailed and become friends with a lot of people, I've spoken on the phone but I didn't know the person, this is the first time I've actually known someone personally for years that has just be told such devastating news.
I was going to say thankfully he's older than me, but what's thankful about that he still has this cancer, we know the tumours grow slower as you get older and usually the diagnosis use to mean certain death not that long ago, but meso is being diagnosed a lot earlier these days, usually before it has a chance to totally wipe the lung out, so I am hoping again that all those statistics out there are wrong.
I am a strong believer in that the earlier it is discovered the more affective the treatment and again I was asked the question chemo or surgery. My mate wants her brother to go through surgery but I have tried to look at it from both angles. If the meso is young then maybe the first course should be chemo, after all a new meso member has had good remission from chemo and without too many side effects, if he goes straight for surgery that's a year of his life in recovery, okay maybe not quite that long, but the first few months are hard work on both patient and family. Then again if he went for surgery now while fit, maybe the asbestos bit would be removed and the rest of the seeds would come away with the lining and we would have full remission, but then we don't have cryoablation to remove any unwanted tumours that grow!
It also brings back rotten memories of those first few weeks when you don't know which way to turn, what to listen to and what to ignore. As Lorraine put it, she wouldn't wish the effects of chemo or surgery on her worst enemy, worse for her as she has been there through my treatments along with hubby and has seen the damage both can do.
Bless, he and his wife are still shell shocked as he was only told yesterday, then I arrive and give out all kinds on info on the disease and it's information overload.
Your coming to terms with a cancer that will kill you, whether your 40 or 70 and use to being fit and healthy its a shock. What you think is a trapped nerve or just a bout of pleurisy leads you to a death sentence, is hard to take in. I must admit he was given a booklet on it, more than my piece of paper when I was first told! but it's still lacking. I don't know what to suggest to make the telling of the cancer any easier or what information should be given at the time but what is happening at the moment isn't enough.
It was only the other night that Terry123 wrote and let the EPP group know that Bill passed over, in one way its good that we have all formed a support network but the flip side brings us bad news too when we loose someone to the disease.
I was out of sorts today to, I got up felt terrible and unlike my normal self I went back to bed. I awoke at noon, I had sweated the dead rabbits, my weak spots were painful and I nearly cancelled as I didn't think I would give him a good impression of survival. Thankfully neither he or his wife noticed and we did have quite a long conversation.
When I came home hubby had pulled out the offcuts of carpets we kept, Bear's sleeping area is complete. Lexi wasn't too happy when he brought the kennel bedding out of the cupboard and stuck by his side all day. For a joke I nearly went upstairs and pulled the suitcase out .. I think she would have gone spare! At least that would keep her confused, as tomorrow the pup arrives and none of our lives will be the same again.
We have been strong and are only bringing back one pup, just hope our heart strings don't get too pulled tomorrow when we see the little girl for the last time.
I also must get the changes loaded to the website as I have a wonderful story from Danny which will lift alot of people out there. If anyone else has finished their pieces please get them sent in asap. Its true, most of what we read is depressing and above all else this is a time when we need to hear happy endings, or near happy endings, obviously death isn't a happy ending, but success with treatments, years of life we weren't suppose to expect are good news. If we all believed the statistics then most of us would be pushing up daisies by now, especially me!
I know that some of my postings have been heavy and I also know my story isn't pleasant but I hope that's the worst end of the spectrum, Danny's is on the good side of the spectrum and indeed I know a gentleman who has become a friend, diagnosed a week after me, we went through chemo together, he wasn't as affected by the chemo as me, and he is still going strong. Very little growth in 5 years and still doing what he wants in life. These are what we want to hear, success stories, but we also need to know about the sad stories too, how then do we place our own luck at survival from this crippling cancer.
People look at me and think and through the treatments thought that I always looked well and still don't realise how much pain I am in. I have been unlucky with the pain side, indeed Lorraines brother hasn't had much, even after surgery, and I am so pleased for him. I know a lot of people and each one suffers differently, some have pain, others have a little and some, god bless us, have a lot.
Another thing about this cancer is no one can tell you which way it will go. If we had colan cancer nearly each sufferer has the same symptoms, the same pattern of illness. Mesothelioma never seems to follow the same pattern with anyone. I'm A Typical, which means its not text book meso, but what is textbook meso?
Many of us have been to Action Day's and listened to the patients view, and at question and answer time, how many have actually experienced the same as you? We have one thing in common breathlessness, which comes on so gradual that it is hardly noticed, but then that doesn't cover 100% of all mesothelioma sufferers.
I've said before I hardly had colds, I didn't suffer the normal illness's everyone else did, but I had endo then straight into meso (how unlucky was that!) I bet the majority of you with meso hardly ever had a day off work, didn't suffer from colds, sore throats etc. I didn't get a bad chest very often but when I did it was really bad, but maybe only had one every other year or longer.
Going to crash on the sofa as my back feels like the old iron bar is pushing into it, probably another hot water bottle tonight as well. Must feel better for tomorrow as its 5 hours round trip in the car, which will knock me back without feeling out of sorts to start with.
To any one reading this, if you think of any ideas a what a Doc could do when they are going to give the bad news, I for one would be interested. Maybe we could group them all together and send them on to the chest guys to read. After all it should be the patients that make a difference to how we get treated.
Good night and god bless
Jan
No comments:
Post a Comment