know your body

'Tis a lesson you should heed.  If at first you don't succeed, Try, try again.

1840 T. H. Palmer Teacher's Manual 223
Once I was admitted to hospital I was put on intravenous antibiotics and started to feel a bit better. We were due to move house that week and I was a bit stressed by that. Poor Russell had  a lot of running around to do and it wasn't helped by the fact that my signatures weren't matching up to computerised ones. Thank god for the lovely man at the RBS for trusting. When I was visited by a doctor she asked me to talk her through the last couple of months. She wasn't impressed by my tale and said that my chemo regime should have been changed long ago and my side effects were intolerable and unacceptable. Hmm my thoughts exactly. She asked my permission to write to the oncology staff stating this. I didn't argue.

I recovered and was dismissed in time to move into the new house. The bonus was that many friends had come round and spent their Saturday painting the whole house from vile magnolia to white. Thank you all of you. When I went back to the clinic I was asked if I wanted to stop chemo at this stage as it was doing so much damage. Anyone who has been through this type of situation will know how hard that was. The thought of another dose was hellish but at the same time I wanted to protect myself in the future. I decided to have another round at a reduced dosage (at last some tailoring of the drugs) and see how it went. I remember thinking that I couldn't live with myself if it came back and I had chosen to cut it short. This time around it was less awful, that's about the best I can say about it. I did get through it though without major health issues but it was still hard. At my next appointment it was decided that we would call it quits. I was delighted as it was nearly Christmas. Within a very short time I was feeling good and my hair was coming back. We had a nice festive season.

I was due to start my radiotherapy early January and I was dreading what that would bring. This regime means that you go daily for a session for a month. To be fair it was straightforward. During this time I started to have other problems. What I didn't know about chemo was that the effects linger on. Its not a really a big surprise I suppose. I had developed painful joints and other ailments. I was told that these were just the chemo hangover. I had also gone into early menopause and the hot flushes at night were causing massive problems with sleep. Again, just another nice wee reminder of the chemo. I ended up agreeing to take part in a piece of research into post chemo menopausal symptoms and the effects this had on sleep. I kept a sleep diary as part of this and only then realised that I was averaging about 3 hours sleep a night.

On February 10th 2012 I had my last radiotherapy session. It was over. I asked one of the radiographers what happened next and she told me that I would be sent a letter for an appointment with a consultant in about 6 weeks. That letter never came. Here is yet another example NOT to follow. I got energy back and tried to get back into a normal life. I was actually pretty down and I think its probably not uncommon to feel this way after such an experience, but at the time I couldn't understand why I didn't feel happier. By March I was noticing changes in my breast. It felt strange and the area around the scar from the lumpectomy felt hard. I wasn't overly worried as I rationalised that after all of the shit I had been through there couldn't possibly be any cancer. The changes continued though and when I went to the clinic as part of the research I was taking part in I asked to see my breast care specialist nurse. She wasn't available and I asked for a message to be passed on about my concerns. I never did get the chance to see her. I was confident that my follow up letter would arrive and that I could discuss the issue with a doctor soon.

Time slipped away and before I knew it, it was Easter holiday and then it was May. I still had no appointment through. By the May I was having pain in my breast and there was what I could only describe as a lump where the scar was. Russell told me to see my GP but my argument was that I was now in the care of the Beatson and my GP wouldn't really be able to do anything. Like most people I had always believed that breast cancer was not painful and that if you had a painful lump then it was more likely to be a cyst or some other benign problem. I didn't bury my head in the sand but I also didn't do as much as I would recommend anyone else to do about this. I did make many phone calls to my breast care nurse to find out about my follow up appointment and get general advice but these were unsuccessful. Getting through to the right people isn't easy and if I could go back in time I would turn up at the hospital and demand to be seen, please don't make my mistake if you are ever in such a position. Listen to your body and MAKE the care staff listen to you. More time passed and before I knew it I was back at work. The pain etc was still ongoing but I was less free to pursue the issue. By June I was no further forward and very frustrated. I decided that I would just wait and see my original consultant after my annual routine mammogram which was due in late June. I went for this and was going back for the results in the July. We went on holiday and my breast was becoming more painful and looked pretty mental by this point. I was back to the clinic to where it all began a year earlier, at the end of July. My original consultant came in to the room and announced the good news that the mammogram was clear. Great. I was less confident. I told her about the problems I had been having and she asked what they had said at my follow up. What follow up? This wasn't discussed any further. Deja vu? When she examined me she agreed that my breast looked pretty awful and suggested plastic surgery. She also said that we should have an ultrasound just to be on the safe side. This was scheduled for the following week. I was beginning to worry. The ultrasound again showed nothing suspicious and I was told that there was a lot of bad scar tissue but no sign of cancer. As a final precaution I was given a biopsy and would get the results the following week. I was told not to worry too much as I left.

The following week I went back for the biopsy results, I had taken the advice and not worried too much. So much so that I went alone as didn't see the point in Russell coming home from Ardroy. As I waited I was thinking about my Higher class and a couple of things I wanted to say to them later that morning. It was only when I was called in to the consultation room and left on my own for a few minutes that I asked myself "I wonder if I should be worried"? In no time my question was answered. The doctor appeared and yes the angel of doom just over her shoulder. The journey was about to take another twist.