Opinion

When Brenda was first diagnosed with secondary breast cancer, she signed up to the drug trial register. We made enquiries with her team on several occasions about potential trials and we were advised that she wouldn’t be considered for a trial until she was much further on with treatments. We were unaware at the time, but later found out that the information regarding criteria was completely incorrect. There were other patients in the same situation as Brenda that were being put forward for trials that were  proving successful. Women with the same cancer, same age and same health history as Brenda. Why not her? I became very angry and bitter when I discovered this. Why are some being fast tracked, and not others? What is the method and criteria of selection for such trials? Further into Brendas treatment lines, we asked her professor yet again why she wasn’t being put forward for anything. At this stage we were advised that their researchers were searching for a suitable trial drug that matched her cancer.

Later, through my own research, I found the professors statement to be incorrect. Sadly, by the time I found out what I did, Brendas condition had deteriorated so much with poor inappropriate treatment regimes, and of course the progression of the cancer itself. Trial would probably have been out of the question. Brenda would not consider anything but the formal method to access a trial.

I can’t put into words the position Brenda found herself. She was assertive and a quick thinker, but I know she had completely lost confidence and faith in her team and was hesitant to question or challenge anything. She knew she had to continue at least trying to trust in her team and her treatment plans. She always done her best to hide any negative thoughts and feelings that she had, as well as her fears – always considering others before herself and trying to reassure us that everything would be ok, though I know deep down she was so scared of what was ahead.

Brenda was admitted to hospital four of five times in a fairly short period of time. It felt like it was one thing after another and it was so difficult for her to keep her spirits up….yet she did. Brenda was always strong, both mentally and physically.

 Several months after starting treatment there was a day that Brenda became very unwell. At the time, we were unable to identify if the cause was due to progression of the cancer or side effects of the treatment. I phoned NHS 24 and I was informed they were extremely busy and there was a two hour wait time. I decided to take Brenda straight to hospital myself. I advised the oncology team that Brenda needed help urgently and she was outside in the car at that time. The nurses stated there was nothing they could do and to take Brenda back home. Thankfully a receptionist from the minor injuries clinic came to my assistance and spoke with a senior nurse from one of the assessment units. Brenda was finally admitted and was diagnosed with double pneumonia and a blood clot.

There was another occasion that Brenda became very unwell and had difficulty breathing, she was admitted to hospital but they were initially unable to confirm what was wrong with her. They eventually advised that she had either pneumonia for a second time or a similar condition called pneumonitis. It was explained to Brenda that pneumonitis is a side effect from the drug that she was on for her cancer treatment at the time: everolimus, and therefore it was more than likely pneumonitis and not pneumonia. Brenda was then advised that treatment on this drug would be stopped with immediate effect. It was during this stay in the western general, Edinburgh, that Brenda witnessed another cancer patient having a seizure. One of the nurses was singing and laughing at the time the seizure was happening and this upset the other women on the ward. Additionally, during this hospital stay Brenda was asked to sign a DNR (do not resuscitate) document by a doctor. This was completely unexpected. Brenda was disgusted at this and refused to sign anything