Trials Medical

when brenda first started off in her journey with metastatic breast cancer she signed uf to the drug tral register . we made enquiries through dr hall who advise Brenda that she would not be considered for a trial until she was much further on with treatments. We were unaware at the time but we were to discover, DR Hall was completely incorrect recarding access to drug trial criteria, frustratingly we found out that some very fortunate patients were accessing trial drugs through a back door with some of the cancer charities. I was very angry and bitter at this fact, it did come to mind that many senior DR’s have board positions with many charities and cannot fail to see the possibility that some very lucky people are being fast tracked, unfortunately I have made attempts to find out whether this method of accessing a drug trial is legal or ethical, but so far have not achieved any answers, what i can say is when enquiring with Professor Cameron he advised Brenda that his researchers were constantly searching the trials register for a suitable drug to match her cancer. Later through my own research I found Professor Camerons  statement to be incorrect, sadly by the time I had this information Brenda’s condition had deteriorated so much with poor inappropriate treatment.

Regimes, and of course the progression 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.

Brenda

I cannot overstate the position Brenda found herself in, she was a very clever lady, but I know she had completely cannot lost confidence in her team very early on, sadly she knew she had to continue at least trying to have some faith in them, almost all of the time she would hide her feelings and thoughts . she hould have been considering me. I have suffered PTSD / GAD for many years, being ex military, this was Brenda, always thinking of others.

Failures Continued

I wonld not describe Brenda as super human but have referred to her as one tough lady, even so Brenda was admitted to hospital 4-5 times, very significant failures were prevalent here also. Soon after initiating treatment for metastatic cancer Brenda became very unwellI. I phoned the NHS 24 line. I was informed extremely busy possibly 2hrs waiting time, I took Brenda directly to hospital advised hospital Brenda felt very ill.

she is also  cancer patient, and she is outside in the ca. The nurses stated they could do nothing and I was to take Brenda back home and  re-call NHS 24. The receptionist at minor injuries came to my assistance and spoke with the senior narse from 1 of the assessment units. Brenda was finally admitted with double pneumonia, and a blood clot. On another occassion whilst in hospital again, again very ill, and also with difficulty being admitted Brenda was advised they were unable accurately confirm what was wrong with he. They did however confirm she either had, pneumonia or a very similar condition, called pneumonitis. Pneumonitis was a side effect from the drug that she was on at the time being treated with – Everolimus, therefore brenda has further advised they would be ceasing this treatment immediately, as it was safer to consider it was, pneumonitis rather than pneumonia, although they could not say for certain.

It was during this stay in hospital, cancer assessment unit Western General Edinburgh, Brenda witnessed a fellow cancer patient having a seisure, she was also vomitting violently, when 1 of the nurses was singing and laughing. The other women patients witnessing this were very upset, additionally during this time in hospital Brenda was approached by a DR unknown to her and was invited to sign a DNR, Brenda was disgusted and refused.

Broken Arm
Sometime July2022 brenda had a fall in the the back garden. At the time we had sometime no idea if she had sustained any injuries, but called 999 we were advised it was very busy and to make her comfortable, but do not move her . call unable to give ETA. We called cancer line who were unable to help, Call handler returned call giving ETA of approx 5Hrs . I informed them we are not prepared to wait my son, and i administered some morphine prior to lifting brenda from ground. Brenda passed out at this time. Once at  the hospital Brenda was diagnosed with a seriously broken arm, and placed in a cast. The following day we were contacted and advised she required an mMRI scan to ascertain if bone cancer was on her arm. The hospital were unable to confirm a date for a scan, advising it could be weeks. Brenda and I considered paying privately for the scan, however Brenda was experiencing severe injury pain attending hospital several times as out-patient.

I was at this point, Professor Sam Paton became involved. Brenda was fast tracked for consultation with him, and almost immediatey after recieving her MRI Slan .

Phone Call
Soon after the MRI scan, Professor Paton phoned Brenda and I, Brenda gave her consent for me to take the call, Professor Paton, firstly confirmed a very complex fracture ( unusual ) shockingly he also confirmed bone cancer in her arm, advising that surgery would not be appropriate stating bone likely to break up when drilling, Professor Paton enquired whether Benda and I were fully aware of the extent of cancer. I  informed him breast cancer with extensive mets on liver, some on bones – lower spine, hips and pelvis. I was very angry and upset when the Professor informed me the MRI results had shown extensive cancer mets throughout skeletal mass, he was aware that I was clearly shocked and upset at hearing this. I advised him that Brenda and I had continually been advised by her team that her bone cancer had continued to remain stable, with no progression throughout her treatment. Professor Paton talked brenda and I through his plan of action, getting a more substantial cast fitted, he advised even with cancer in the arm there is no reason the bone will not repair itself, although not in the normal natural way, that a non-cancerous bone would heal.