So tomorrow we get results, or not, this is limbo land.

Last week I walked into a MRI scan I wasn’t expecting to see just at that moment, the shock was partly because MRI scans are dead easy to read. Other films are a mystery, they need a medical eye, an MRI when you’ve been injected with contrast dye just lights up lesions like they are twinkly Christmas tree lights. It is quite something to be admiring how clever something is whilst loathing what it might be showing you. Cancer screening is difficult; some cancers are detected by screening but mammograms and ultrasound are just inconclusive if you have dense tissue. MRIs are really sensitive, so they pick up lots of stuff, stuff that is picked up could easily not be cancer.

This is what I would like them to be. My lesions. Not cancer. I would like them to be nothing. Having had to move to thoughts of more radical surgery and treatment, I could happily adjust right back to just removing a lump. But I’ve been down the rabbit hole and, at this stage, I am probably more worried about them missing something. My issue was that the radiologist couldn't correlate the ultrasound to MRI so how on earth did they know they got the right tissue. Luckily for me my very nice and sensible Senior Cancer Nurse at the Royal Marsden rang me yesterday. I’d written to let them know my diagnosis and to see if they wanted to discharge me because I was having treatment locally. She had lots of advice and my main fear was a question answered with the response that if the tests are inconclusive, i.e. don’t test positive for cancer tomorrow, I must ask for an MRI biopsy anyway. Nice to be clear. 

I won’t post her name here but I love the Royal Marsden and I love those nurses in the family history clinic. I’d been referred when I went to my GP (in London at the time) for antibiotics, I had terrible bronchitis. Someone came out into the waiting room to say they were short staffed and could anyone come back tomorrow. I knew I couldn’t but said I would only need a prescription so could be quick. Once in surgery it wasn’t quick, and to cut a long story short, GP asked me if I was worried that my mum had breast cancer so young. I said I was but I was in my 20s so nobody would take me seriously. I was referred to what was then a next of kin screening programme, it morphed into a family history clinic which lots of areas seem to have now, it may be a thing. I stayed under the Marsden when I moved to the Midlands because they are all brilliant and I like a trip to big London. I always thought I would want to be treated there, but that isn’t practical. I could though ask for a second opinion if I get to that point. I am also immensely grateful that I know I can call them if I need to. 

Nurse also had advice about genetics (without being specific, I am unlikely to reach the threshold for genetic testing but worth the referral so ask your GP). In all types of cancer, some of the body’s cells begin to divide without stopping and spread into surrounding tissues. There can always be something hereditary about this without having the BRACA1/2 gene Angelina Jolie has talked about. Nurse also told me the 5 things I need to know about my cancer but I have forgotten most of them. I was really so traumatized by talking about it and so grateful she wasn’t talking to me like a partially deaf 3 year old that it was all a bit overwhelming. Nurse is a lesson in how stuff should be done, and again I completely understand it might be my distress dictating my response to my nurses but my husband found them patronising before i motioned a thing and he is much kinder than I am! 

Mainly what I got out of that dialogue was the empathy and understanding of what this diagnosis means. Someone who didn’t pull any punches, was reassuring about how treatable this is, but also understood about the losses that aren’t just about losing a bit of your body. The bits that are about becoming a patient, bombarded with medical appointments and no say in how that pans out for your day and your life. There is a loss of identity in that maelstrom and the impact of not being able to do your job when you love your job. Putting me first is not only about my health, I won't sacrifice it, but cancer is not about to define me. That this nurse also understood how frightened I am was a gift. 

Top tips: 

I never want to scare anyone so for anyone reading this who is worried, the best way to detect breast cancer is to readup on self exam, detect change. Know what is the norm for you, I was ‘lucky’ because I really knew how to do that stuff after 30 years of exams but it is never too late. 

& for radiologists rummaging around inside my body. Well what can I say, my feedback is being compiled for the one I had last week, in the meantime this is a reflection of her practice: 

1. So telling me to relax something (am arm for example) so you can do your job more easily is an oxymoron. You need to tell me where you want said limb and I will do that, I will not be relaxed.
2. Whilst I am doing that and you are taking a biopsy it isn't helpful for you to say I have difficult breasts, you may find my tissue dense, you may find your screen difficult to read, all of that is difficult to take accurate samples. There are kinder ways to say that than making me difficult in any way. The other radiologist who said I had busy breasts, I'll take that, I knew she was being kind. 
3. Whilst using a very very large tube needle in my armpit without pain medication, if I say I am practicing mindfulness and imagining myself on a desert island (it worked - I didn't know it would!) laughing at me and saying this is hardly a desert island wasn't helpful for either of us. I came  straight back to pain and that was the point that I said I couldn't tolerate any more rummaging. Do you think if you had left me on my island you might have had a more successful exploration?