Kathleen’s Journey

How many of you have lost a loved one to cancer? How many of you have heard the term “he or she died peacefully”? Anyone who has witnessed a loved one dying in this way will appreciate that there is often nothing peaceful about it. It is heartbreaking, you are in fearful limbo, undergoing constant challenges and the result is painful and exhausting both physically and mentally. This may sound a little dramatic but it is an honest assessment and it was honesty which I felt was lacking in the story I wish to tell you.

At the beginning of 2014 Kathleen, my Mum, had a follow up Colonoscopy having previously had polyps. However on the day the procedure was performed there were complications and the test was abandoned. She was informed she would be recalled but sadly had not yet received this appointment at the beginning of 2015, when she died.

She became unwell during the summer of 2014; fatigue, loss of appetite and change in bowel habit. As her symptoms worsened she isolated herself socially. Her GP prescribed laxatives but they just made things worse and caused abdominal pain. I would say at this point she had no quality of life. She visited her GP and asked for more investigations but was informed that tests such as CT scans were expensive and she did not require one. This shocked us.

In November her abdomen became distended and the pain became worse. We were left with no option other than to take her to the Emergency Department. To my horror Mum was sent home with more laxatives but was so poorly had to return the next day. Once again they wished to discharge her but my dad stuck to his guns and insisted on admission. She had a number of tests and on the following Tuesday a CT of her abdomen. This revealed bowel and ovarian cancer. 

When Dad was asked by the Consultant to be present when he gave Mum the results he knew it was going to be bad. The Consultant informed them that the cancer had spread and that Mum only had weeks to live. There was no treatment to offer. There is no skirting around news like that. It was devastating but we were grateful that it was delivered with humanity, compassion and honesty. You don’t forget these things. As a family were reeling. The grandchildren were heartbroken and we all struggled to come to terms with the news. And then…..

A few days later another doctor came and told us the CT results were ‘inconclusive’. This news was delivered with a flippancy and obvious lack of understanding to how we all felt. We were then told that it would be over a week until we knew what the plan was as we needed to wait for a multidisciplinary meeting. This was almost too much but we clung to the hope now presented to us. Maybe….

Then we were told that there was no curative treatment but there was an option of palliative chemotherapy which MAY shrink the tumours. They offered 6 months of chemo which sounded hopeful and Mum went up to Edinburgh. However after the first course she suffered a perforated bowel, apparently as a result of the chemo, and was admitted to the palliative care unit. She was now asked what she wanted and discussion turned to the funeral!

Why was my Mothers final 6 months such a roller coaster? Why did it take so long to diagnose her? The end result would most likely have been the same but did she have to go through so much pain and confusion? I understand that an administrative error led to Mum not getting her follow up colonoscopy. This is inexcusable but when she became truly ill no-one seemed to listen to her. Listen to her symptoms, listen to her story. Had an individual healthcare professional actually listened to Mum or Dad and taken them seriously then I have no doubt she would have at least had her scan and diagnosis earlier.

And then all the confusion about “was it cancer or was it not?” It clearly was and the first Consultant we saw was clear about this and, not only did he honestly tell us the news and prognosis, he was right: she only had a few weeks left. A few weeks that could have been much kinder had she not been given false hope and a worthless (and uncomfortable) trip to Edinburgh. It was only when she got to the palliative care unit that they asked….What matters to You?

That is all it required….someone to listen and honesty.

Mum died in the palliative care unit well cared for and in dignity. The staff were honest and kind. They listened to her needs and provided them. We are very grateful to them and their professionalism.

This week’s blogger wishes to remain anonymous

6 thoughts on “Kathleen’s Journey

  1. Thank you for this. Communication is tantamount to what we do, and we must all make sure we are listening but also hearing what is being said.

  2. My partner works in Oncology Services in another Trust and was often concerned about patients and families having just the experience you have described. The challenge for him was that achieving the best outcome meant different things to different staff. He was always concerned that the best outcome in terms of quality of life might mean further invasive treatment to prolong life to a good standard, but at other times (depending on the treatment) might mean recommending that no treatment was pursued other than managing symptoms. He was often anxious that some patients were determined to have a certain treatment in the hope it might cure them, but that they often hadn’t been helped to really understand the stage of disease and that the treatment they wanted would ultimately hasten their death and make it significantly more painful and unpleasant in terms of side effects in the process. At those times, certain staff would spend time talking patients through the consequences of certain treatments and support them in a more informed choice about living their remaining days in some degree of comfort. Unfortunately sometimes this was readily blown out of the water by other staff then giving false hope based on striving for curative treatment at the expense of quality of life.
    I think we all differ individually about what we would want when faced with such a decision and with how we cope with the distress felt by patients and families in that situation. And I think this often clouds the support and hope we give.
    I’m sorry your family had such an experience.

  3. Thank you for sharing…it’s heartbreaking. I was in a very similiar position with my own mother. Unfortunately her news was not delivered in an empahtetic way, it was very matter of fact with no concern for her feelings, fear or shock. Her cancer was misdiagnosed and she was never afforded treatment. Diagnosed with bowel cancer at the end of January and died 11th March after being admitted for an infection we were told could be effectively treated. Neither myself or my father expected or were told that she was in her final stage of life and would die that evening. If we had been told the truth, we may have said more when we kissed her goodbye expecting to visit her the next morning…we never got that chance.

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