Anne Conlon

Hello I would like to tell you my story if that is ok. It all started a few months ago prob about 7/8 months. I was working for a care company looking after old people in their own homes, I was working a lot of hours day and evenings Mon to Sun everyweek. I ended up so run down I got shingles in my face and eyes, I was very ill anyway I had to stop working for awhile and it cleared up. I went self employeed which was much better so life went on as normal, I was happy in my work. I have asthma so one day I went the the asthma nurse and asked her if I could have a x-ray done, she asked me why so I said well my Mum has got emphersemia and asthma and I wanted to make sure I didn't have it or the onset of it so she said yes that would be a good idea. So a week later I went off to the hospital and had my x-ray well little did I know this was going to be the hardest few months I was going to have in my life because you see I am never normally ill, never go to the doctors and never been in the hospital only to have my four children who are now grown up with children of their own. So anyway back to my story I had my x-ray done and was told I would hear the results in about 10 days If I didn't hear anything then everything would be clear so I waited. 10 days came and went never heard anything so I thought thats good I must not have it so I got on with my life. Until one morning I got a letter through the post saying I had to make an appointment to have a ct scan at the hospital. I went into shock so I eventually phoned my doctor and said whats this all about I got a letter from the hospital to have a ct scan have I got cancer he said no I do not think so but now I am in panic mode not knowing what is happening the doctor didn't tell me too much except evade my questions. A week later off I go to the hospital not knowing and worrying about what is going to happen to me. I have my ct scan another 10 days later I get another letter I have to go to the hospital for a lung function test, blood tests, more x-rays and a heart monitor. Still not knowing what is going on another 10 days pass and I get my results I have Sarcoid they think, so I see a lung specialist who tells me that he is sure I have got Sarcoid but not 100% certain. I need to send you for a bisopsy through your nose and into your lungs. So off I went for this after about 3 months of waiting for the appointment the results come back 1 week later and I see my specialist again he says yes I am almost certain it is Sarcoid he then tells me a bit about it then asks me how I am feeling health wise, so I tell him I have hot sweats day and night, nighttime being the worse time because I can't sleep I am awake nearly all night. I am struggling to breath I am having leg cramps and pain in my body, I have got a cough which I have had for weeks maybe months. So he says right I think you need another biopsy this time through the neck in my lungs so they can take a piece from my lungs and my lymphnodes so again I am admittted into the hospital for this to be done the next day the specialist comes to see me and I asked him what he was looking for and he tells me lung cancer/lymphona/sarcoid or TB. So now again I am in a deep panic mode terrified I have got lung cancer I could hardly speak for a week not to anyone. I just sat really quite thinking the worse I think I was in shock anyway I eventually got my results and the specialist says good news no cancer anywhere in your body. Thank God it is definatly sarcoid I have got to admit I was relieved.  I have now found out since from my specialist that I have got it very bad in my lungs, he showed me my x-ray and it is covered in these white patch like things all over. He said there is more at the bottom of my lungs then there is at the top, I have also got it in my lympnodes in between my heart and lungs. He said I have very poor lung function and if they had to take a piece from my lung they wouldn't be able to do it because of the state of my lungs with the sarcoid. He said I would prob die, he also said I am going to be very ill from it and that I will prob struggle to walk because of my breathing I told him I keep feeling dizzy and that my legs go to jelly and hurt when I walk. He said its all part of sarcoid but now I see my specialist again Nov 4th, so I will see whats happening then. I am still glad it isn't cancer thank you for taking the time to read my letter. -Anne Conlon