I know in my own heart and mind that I should have fought harder for Brenda. I should have been more assertive with her team, challenged more, educated myself more, advocated for her when she didn’t have the mental or physical strength to do so herself. I’ll never forgive myself for that. However, I don’t think she was given the attention and care she deserved, something we shouldn’t have had to fight so hard to receive.

Cancer

We know very little about cancer until we are staring it in the face. It is intelligent and advanced . I don’t think any of us are under any illusion that it will always be a difficult battle. We were reminded several times that Brendas secondary cancer can’t be cured, only treated. Successful treatment is aimed at long term stabilisation and is the next best thing to cure. There are meant to be so many advanced drugs out there, yet oncologists are still using old drugs that are destroying patients health, giving them a lesser chance of beating the disease. Follow up biopsies and body scans should be a routine part of their treatment plan.

Scandals

At this very moment, the media is full of stories about the blood scandal…who would ever have imagined? I appeal to you to consider carefully what I have written. At points, it reads like fiction. I know there are things in life that we don’t know or want to know. That doesn’t stop them from being real.
I recall attending a consultation with Brenda when she was on everolimus and exemestane and Brenda asking the Professor the question “will I know when the end is near?” The Professor advised Brenda that there would be very clear warning signs and it wouldn’t be a sudden thing.

On the 4th of September 2022 Brenda was admitted to hospital due to being very unwell. Amongst other things, Brenda had severe oedema in both legs. She was informed that albumin was leaking into her bloodstream. Two doctors visited Brenda on the ward and advised Brenda that the next two weeks would be critical – they didn’t divulge anymore at that point and it wasn’t clear exactly what ‘critical’ meant to them. I made requests on several occasions to have a follow up discussion with the doctors in order to query their earlier comments, but they never did make the time available to answer the follow up questions Brenda and I had. There was a big change in Brenda by then, both physically and psychologically. Brenda was thinking that when you don’t and can’t get answers, it usually means things aren’t good. At the time of admission, Brenda was placed on a drug called fulvestrant. They didn’t explain what it was intended for but it certainly didn’t improve anything. Just before Brenda was discharged from hospital, Brenda was placed on a drug called epirubicin. Brenda was extremely unwell at this time, and very rapidly continued to deteriorate at an alarming rate. There were no further consultations arranged to assess her or to check how Brenda was responding to this new drug. Looking back, I was in a complete daze at the time – I knew then that she was terribly unwell, but I lost focus on what was going on around me and all of my attention was on Brenda, just Brenda – not the doctors, not her team, not anything else going on around us. I was watching the love of my life lose her life, yet it didn’t seem real.