“My Voice” by Jane Haden

Jane Haden - 'Survivor'

I felt I was starting to go mad, sick of having this constant aching pain in my left arm and feeling like my body weighed a tone, everything seemed such an effort.  It wasn’t that I didn’t exercise; I loved dancing from an early age and did different kinds of classes as well as doing amateur dramatic shows.  It was great having such a variety of friends as well as a wonderfully partner, who supported anything I wanted to do and believed that if I put my mind to it there was nothing I couldn’t do, it was lovely to be so protected and cared for.

My partner, John had told me on several occasions for at least 4 months or more to get referred to a specialist with the pain as it was getting beyond a joke.  It had got to the point when I would only need to brush my arm lightly and the pain would be that severe that it would make me drop to my knees, gasping for air and clutching my forearm until I could catch my breath or the tingling numbness eased off.

Eventually I was referred and I was sent for MRI’s, X Rays, CT Scans and ultrasounds, these inconclusive so I was then sent to have an open biopsy which entailed cutting along a previous scar in my forearm. I waited anxiously for 4 days for results, I never imagined the outcome. I walked into the specialists office on my own and sat down, he told me that my tumour was malignant it was a synovial sarcoma which is rare and very nasty and it was growing fast so we need to remove this part of the bone urgently.  I sat there for a minute taking in what he said writing things down it was almost like I was another person.  That night was a bit of a blur I think I cried in John’s arms for most of that night.  It didn’t really hit me that I had Cancer, until I was in hospital after having my radial head and part of the bone removed along with tissue and muscle.  The operation lasted about 6 hours and unfortunately the block they had put into my arm had not worked so when I was coming to in the recovery room the pain hit me like a truck, I remember hearing someone screaming and then realised it was me.  After a long night of painkillers being injected and sleepless nights I remember looking down and the scar whether it was the sight of my arm or the sudden realisation of the whole situation I remember feeling fear, loneliness, confusion and numbness which all hit me at the same time.  I thing that is when it really hit home for me a day later I was assigned a MacMillan nurse who has been a great source of help to me.  I remember thinking only people who are really ill deal with MacMillan obviously it then occurred to me that I had this horrible illness that could have killed me.  I was in hospital for 5 days and then after a week started physiotherapy to work on getting my arm as straight as possible for the radiotherapy, that is probably the most painful thing I have experienced to date but I worked hard every day at home and got it to a level that was acceptable for treatment.

I have now just completed 33 radiotherapy sessions and now have to wait 8 weeks to see if it worked, if not I may then have to have some chemotherapy.  The hospital has informed me that they will keep a close eye on me with chest x-rays every 3 months and will be monitoring me closely.  I find it hard to talk to my family and friends some times as it seems to upset them.  They tell me they understand but how can they.  I lost my brother in law to cancer last year and I know they mean well and having been in their shoes I know how they feel but it is not the same.

People keep telling me to be positive, and it makes me feel like screaming at them, “I am!”  The main feeling I have at the moment is anger I can’t seem to stop it although I try and laugh it off it is always there bubbling under the surface.  It is hard and although I am being very positive I am determined that this horrible thing is not going to beat me. However,  I still constantly feel lonely, confused and a bit scared.  Maybe it will go maybe not but unfortunately I know cancer will feature in my life forever, but the important thing is that I refuse to let it rule me.