Man given palliative care after lymphoma diagnosis

Rebecca Whitney’s father Colin, now 77, was originally diagnosed with stage four lymphoma in the summer of 2019, around a year after he had been beginning to experience breathlessness and chest pains.

Just months before his cancer diagnosis, Colin was admitted to the coronary care unit at Nevil Hall Hospital in Abergavenny, where a hypothesis was suggested that he may have a form of cancer due to his work history with asbestos, but this was not yet officially diagnosed even after a pericardial window was completed at the University Hospital Wales in Cardiff.

In August 2019, Colin was officially diagnosed with stage four high grade, diffuse b cell lymphoma, an upgrade from a bone cancer doctors believed had metastasised from another cancer, which remained unknown.

Colin was put on palliative care for five years after a prognosis predicted he would not live to the end of the 2020 (Image: Becky Whitney) The Haematology consultants wrote to Colin’s GP in September 2019 and confirmed his diagnosis and plans for surgery, detailing a need for further tests, which his daughter claims never happened.

Rebecca told the Argus: “In autumn 2019, Dad had numerous rounds of chemo, but still complained about chest pains but when we brought it up, we were told it was dehydration.

“Lumbar puncture results in the October showed no signs of lymphoma, but the treatment continued. By Christmas 2019, he was diagnosed with difficulty swallowing, which he still has now.”

In January 2020, Colin was told he was cancer free, but his family were later told it was unlikely he would live to the end of the year due to the cancer’s aggressive  nature.

The family were told in April 2020 that Colin would likely not live more than four weeks, and that his quality of life would be poor if he lived beyond that, and he was discharged from haematology.

A dose of steroids in 2023 lead to lumps in Colin's face which they were told was the lymphoma, but that stopped when the steroids were removed (Image: Becky Whitney) Rebecca explained: “He was given oramorph and other medication and has lost his teeth because of it – he’s also completely reliant on a catheter and has become really depressed since.

“Palliative care nurses even told him he should give up driving, removing any hope of independence, and a dose of steroids in 2023 resulted in a loss of appetite and mania.”

An end-of-life package was given to Colin by his pharmacy, but by December, a home visit from his GP noted it was unusual he had outlived the prognosis, and a CT scan at the hospital revealed no signs of lymphoma.

The family asked about a possibility of misdiagnosis but were told primary scans had shown lymphoma, and that Colin would be discharged.

Colin with his daughter Becky earlier this year, and with son Adam pre-treatment in 2018 (Image: Becky Whitney) Since then, they have had multiple meetings with the health board whose records of Colin’s diagnosis don’t match the medical ones.

Multiple referrals have been agreed as Colin is still unwell, with many original symptoms not improving, but the family are no further forward in knowing what is wrong.

Rebecca added: “All we’ve had is a diagnosis of a UTI in June, and a letter from Aneurin Bevan claiming they don’t think they were negligent.

“We just want to know what’s wrong with our father so we can help him. We believe the NHS have gone against their own principles about further investigation by refusing further tests.”

Colin has experienced massive weight loss and is sleeping all the time (Image: Becky Whitney) Aneurin Bevan University Health Board have apologised to the family for Colin’s experience, which they note must have been “very distressing” and confirmed they had written to the family to address their concerns.

The spokesperson added: “However, we would urge the family to contact us directly should they have any further questions.”