25th April 2021 by Jack Allan
Hi, my name is Fiona Gray, I am a 59 year old music teacher living in the Scottish Borders. I was first diagnosed with breast cancer in 2013 and then secondary breast cancer in the bowel in 2017.
I have been on capecitabine for the last 4 years and regular scans every 3 months. However I was doing so well up to the Summer of last year that my oncologist felt that I only needed to come for a scan every 6 months. In October 2020 I had one of my stomach “episodes'' - chronic sickness and diarrhoea over about 48 hours - usually caused by the capecitabine or a reaction to something I shouldn't have eaten - e.g kidney beans! I contacted the hospital and was called in for an early scan. I had a follow up appointment with my oncologist a week later. Up to that point I had found my oncologist to be pleasant , bright and breezy - but not this time!!!
The oncologist told me that the scan had detected a change in my bowel. “They” ( I don't want to get too specific about identity!) were very negative from that point on - I was told that they didn't know what to do if the capecitabine stopped working, that I would have to go back on to intravenous chemotherapy with worse side effects and my hair would fall out again. I was asked what I felt - keep going with capecitabine, or change medication? I opted to stick with capecitabine for a bit longer. I felt that there was an air of reproach in my consultant’s attitude - as if I were a naughty child that had done something wrong, but I couldn't work out what or why! I didn’t say or ask very much as I was quite stunned and came out feeling very low. I am quite tough and I decided after this that I would just keep going and be positive!
However, I was still very anxious about my next scan - in January 2021. I was able to block it out until about the week before: I was working, teaching online, so I tried to put all my energy into this but then it preoccupied my thoughts and I had difficulty sleeping that week. It wasn’t so much the thought of the scan: Scans at the Borders hospital have always been as pleasant as they can be - the staff are lovely, there is a very relaxed unhurried atmosphere but I have never had to wait more than about 5 minutes to be called in for the scan. What was making me apprehensive was the appointment with my oncologist the following week. My scan was clear. So the oncologist told me we could continue with capecitabine and a scan every 3 months. It was a very matter of fact consultation. I didn’t feel much warmth, but I was just relieved to get out quickly! My last scan was at the beginning of April 2021 and I was determined not to get worked up about it - or rather the oncologist’s follow up appointment - but I still had some sleepless nights and bad dreams beforehand. When I saw the oncologist this time, I was told that there was evidence of some change - albeit minor - a shadow where the scarring had always been.
My consultant said that they felt it was inevitable that we were going to reach this point i.e the capecitabine not working any more. They did manage to say that it was miraculous that I had managed to stay on capecitabine for 4 years. I expected at this point to be told that I would be back on intravenous chemotherapy, but the oncologist said that there was another option - palbociclib. The cycle of palbociclib was explained to me, along with taking iron and vitamin D and calcium supplements and receiving a bone strengthening injection every cycle. The oncologist felt I could administer that myself. When I expressed concern about this I was told it shouldn't be a problem as it could be done in the thigh. I wasn't given any literature to take away re my new medication. The oncologist offered to write palbociclib down for me - if I wanted to look it up. I was determined to remain positive through this consultation but when I got back to my car the effort of it all overwhelmed me and I burst into tears and wept for about half an hour before I could drive home. One thing that struck me was that when I had had previous consultations at the Western General in Edinburgh, if a nurse was present, they always came out with me afterwards and had a good old chat about everything.There was a cancer nurse present at this appt. But, apart from being introduced, she didn't contribute at all.
Luckily - when I went for my first appointment to receive my new medication - the nurse was an absolute honey. I could have kissed her. She was so chatty and positive and very upbeat and positive about palbociclib. She told me about their first patient to start taking the drug in 2019 and how that lady was still doing very well with far fewer side effects. This nurse also made it clear that the bone strengthening injection would be given to me by a nurse each time I came for my drugs. I felt that I got more constructive information from her in that half an hour than I had in all the meetings with my oncologist. I came away feeling really buoyed up and positive! I did some soul searching about my oncologist’s “approach” to me: Was it because I appear disinterested as I didn't ask many questions etc etc? But then I told myself to stop! I always made an effort to be polite, pleasant and positive in our meetings and it was not for me to try and work out why my oncologist’s delivery was the way it was.
I admitted to myself that I am not the sort of person who does question things - I tend to leave it to the doctors. - whatever they think is best and trusting that they are the experts! I realise this had to change. I decided that I needed to find a support group who could help me through all this - which is how I came to find the wonderful 2nds Together charity a few weeks ago. In those few weeks, I have felt so much better in that I now have lovely people to turn to for a sympathetic ear, support and unbiased information. I am going to make sure that I am better informed about my treatment and the options open to me, so that I can ask questions of my oncologist in future and not just leave it to them to give me their version! I can't say that my relationship with my oncologist is going to change, but at least now I don't feel so alone and I am ready to be more involved in my consultations - which - hopefully - will relieve some of the anxiety