Have you ever really thought about what control you have in this world? Take any scenario in your head and think what control you have over it. You either will have no control over it or if you do its because its a thought in your head or an action you can control therefore you can change it at any time. So when the Professor sent the letter to my medical team I had absolutely no control over the situation. All I had control of was my own thoughts and actions which for 3 weeks would drive me mad with frustration, thinking I and the letter from the Royal Marsden was being dismissed and that no one would consider the recommendations. My thoughts created hysteria I ranted to anyone who would listen it had now taken over my life I couldn’t think of anything other than was this nightmare ever going to end?
Three weeks after my visit to London I met Dr J. I will just say that up until the point when I made the decision to go to London Dr J and I had a very trusting patient/Dr relationship. He was the one that diagnosed my Inflammatory Breast Cancer even though I had been dismissed by another Dr. He organised for me to be transferred to another hospital when I had lost faith in my original one, he acted on my recurrence in January seeking his colleagues opinions on the best option, he reassured me about the surgeon who would do my mastectomy and all through my chemo if I asked for something to help with the side effects I was prescribed it. Unfortunately what I did learn is that seeking a second opinion from another hospital is certainly one way to piss an oncologists off.
As you have probably guessed by now I am not behind the doors about being forward and with three weeks frustration built up and a pissed off oncologist there was a lot of friction at the meeting to say the least. I do recall my sidekick (who I will now just refer to as B) saying afterwards that at some points during the meeting she “felt like crawling up her own arse” yea I think that was the term she used. Dr J believed that the visit to the Royal Marsden would put a wedge between the trust that I had with him. I said setting the letter aside I was a 37 year old women who had two kids at home and wanted to do everything I could to prevent this thing from coming back.
Well I’m not going to go into the detail of the meeting as I and Dr J agreed to put the meeting behind us and some things are best left that way but we did talk for over an hour that day. I will give him his dues I have never been ushered out of the door or felt that I have been taking too much of his time or felt that he has switched off during any appointments, unlike my first surgeon. I will never forgot the meeting my husband and I had with him giving me the results of my lumpectomy. After he had dropped the bombshell that I needed chemo and that I had triple negative breast cancer that was it his time was up, he had said what he needed to and was making that very clear to us by turning around in his chair and shuffling papers in front of him. People do not realise the lasting impression the simplest of gestures can leave someone with and my impression of him was that he had very little time for his patients. They were just numbers in his clinic get them in, get them out, next please, hit the targets and I’ll get a big pat on the back.
Before I left the meeting with Dr J it was agreed that we would wait and see what the results of my genetic test were which incidentally I had an appointment for the next day before any decision was made about starting a new chemotherapy. I left the appointment more settled, however the looming will I? wont I get it? still there.
The next day I had my genetic testing appointment and met a Genetic Dr who explained everything about genetic testing. Prior to me going I had to complete a family tree of family members who have or had cancer. Going through my family trees and talking to family it became clear that in my grandmothers generation and the generations before her cancer wasn’t talked about therefore it was unknown for sure whether it was cancer they had died from. The Dr explained that it would take 6-8 weeks for my result to come back however she would be in touch when she got the results.
As I was feeling more settled I decided I needed to return to work and I had always aimed to be back to work by May/June 2016 so felt it was a good time to start planning my return. During my absence from work my colleagues were fantastic. My Manager had been really supportive while I was off and kept in touch as my boss but also as a friend. It was really important for me to have ties with work while I was off although I know this wouldn’t be for everyone. Unfortunately some people do not get the option as I have heard some horror stories of how people being treated by their employers while they are off on sick leave due to cancer. I was very lucky and got emails, cards, frequent visits and a lot of prayers and to all those people I will be forever grateful. The social committee had nominated my chosen charity of Inflammatory Breast Cancer Network UK to raise money for throughout the year. It was therefore much easier for me to make a return to work and decided that I would go back on 25th May 2016.
My Radiotherapy had started in April and continued throughout May so as well as going to other appointments I was attending Radiotherapy everyday. Although the Radiotherapy session itself didn’t take long there was always long delays due to instruments being down or just by the sheer volume of patients which go through the Radiotherapy clinic everyday. You get a sense of the crisis which is causing so many delays and putting immense pressure on the NHS when you see the volume of patients being treated for cancer on a daily basis.
On my final week of Radiotherapy I seen a Dr who had to check everything was ok with my symptoms. I remember him looking at the computer screen and saying to me “I see you have had genetic testing, you do know that it is rare to actually have a breast cancer which is genetic? and that you are most likely just unlucky.” To which I replied well then I have been very, very, very unlucky.”
That was the difficulty I was facing with the test result looming. To me it was a double edged sword as although no one wants to have a faulty BRCA gene as it in itself brings a whole new dimension of issues. To me having the BRCA gene would sort of explain why I had been so unlucky and give me a sense of well ok then it was going to happen. So when the phone call came on Tuesday 28th June and the Dr informed me they had found a BRCA 1 mutation it wasn’t the end of the world for me. I can sympathise with other women who have been awaiting those results who do not have cancer and to hear those words must be horrendous, but for me who had already been to hell and back this was ok for me. I had received the sword, however I will never know how I would have felt if it had been the other edge of the sword I had received that day.
I have only control over my own thoughts and my actions.