"My mum's cancer story"

My mum was diagnosed with colorectal cancer in May 2016 following a colonoscopy. She died in St Andrew's Hospice in September 2017, aged 70.

Her story is one of missed opportunity and poorly joined up service; of misinformation and in places, genuine incompetence.

Having initially been told - following CT - that her tumour was too large to operate on, she endured five weeks of daily radiotherapy, with chemotherapy orally, at the Beatson.

Consultations leading up to this declared her cancer to be stage 3, with no spread to distant sites or organs. Discussion were around 'when' the tumour shrunk, not 'if'.

Yet when we returned for results of CTs taken in November, it was to be given the devastating news that the cancer had metastasised to both lungs and pleura, and the situation was now 'palliative'.

However, in the week prior to this, mum had actually been seen by a consultant surgeon who erroneously told her that the cancer had spread to her liver, with no mention of pulmonary issues. She had been told at this stage to more or less 'go home and live what's left of your life'.

The oncology appointment a week later, corrected this info and gave the actual diagnosis of the spread to the lungs. She was offered palliative chemo after the info was delivered in a 'these things happen' manner. At the same time the oncologist told us they were leaving to take up a new post. 

This was the day that changed our whole lives. And when I probed further if the CTs taken at diagnosis had show any sign of spread to the lungs, I was told that there had indeed by 'tiny nodules' but that they were 'given the benefit of the doubt'. Yet no further imaging was carried out for 5 months. In my opinion this signed her death warrant.

Had we had any inkling of this info at the outset of treatment we would have insisted on a different path. It is without a doubt the key to everything that followed on.

She endured six months of palliative chemo in the vain hope that it might give her options. Yet, despite the primary tumour shrinking by half, there were no options given due to the metastases.

As her health deteriorated she was in great pain from that tumour with little or no help from the medical team. Co-codamol was the most that was offered. Only after she was hospitalised in June 2017 having become unable to walk, did we find out that we could seek help from MacMillan cancer care who then involved the team at St Andrew's Hospice. Only this intervention gave mum the significant pain meds she so badly needed. Throughout her two stays in hospital, and eventual two stays in the hospice there was no input whatsoever from her oncology team. In fact, they were so unengaged, that we received an outpatient appointment for her in the week she died.

Only St Andrew's Hospice gave her a little dignity and support and intensively focussed on her multiple and changing needs as the disease progressed. And she died there, having lost the ability to walk, and hooked up 24/7 to oxygen.