A Knight’s Tale (113: Terminal Illness)

One evening, late in 1997, over the space of three hours, what seemed to be ‘flu’-like symptoms reduced my wife Jessica to a terrifying inability to swallow. I telephoned the emergency GP service and spoke to a most unhelpful doctor. He refused to visit and told me to give Jessica aspirin. ‘If she can’t swallow, how am I going to give her aspirin?’, I asked. The response was that I should contact my GP in the morning, and if I became concerned in the night take her to casualty.

In the small hours of the morning I drove my wife to Newark Hospital’s casualty department, by which time panic had set in. There we were seen by a man in white, presumably a qualified medic. He stuck a spatula into her mouth, peered into it, and said he couldn’t see anything. He took a blood test, told us to go home, and said we would have the results in three days. I stood between him and the couch, faced him squarely, and asked: ‘If you can’t see anything, why can’t she swallow?’. At that, without a word, he walked out of the room leaving us alone. After what seemed like an age another man came in and announced that we were being sent to Nottingham. There followed a 25 mile ambulance trip.

Within minutes in one of that city’s casualty departments, with the aid of more sophisticated equipment, epiglottitis was diagnosed. I asked the doctor on duty what would have happened had I not stood firm. He replied that at the next stage Jessica would have been unable to breathe and would not have lasted the night. She was treated, rapidly improved, and we thought that was that.

Jessica seemed well, we forgot about the blood test, and I resumed my commuting to London. A couple of days later, in my consulting room 125 miles away, I received a phone call from my GP sister-in-law. ‘It’s myeloma’, she announced. I had no idea what that incurable bone barrow cancer was. This is what the test had revealed.

Naturally I complained in writing both to the hospital and to the GP services. I had no energy left to pursue the bland responses I received. There were much more important channels for it.

There was a sequel to this story. One of the professional tasks I undertook in Newark was the supervision of other freelance therapeutic counsellors. One day one of my supervisees spoke of a couple with whom she was trying to engage. She said she was unable to work with the man who was unbelievably chauvinistic and treated his wife very badly. She asked me if I would take over this piece of work. I replied that I couldn’t because this was the emergency GP, in fact a psychiatrist, who refused to visit Jessica.

There followed ten years of various treatments, including blood transfusions, two stem cell transplants, and finally, an unsuccessful donor transplant.

Knowing that her first bout of chemotherapy would result in hair loss, she asked her friend Jane Keeler to cut it all off for her.

Mostly she was treated as an outpatient, but there was one week when to visit her in hospital I travelled by train from Lindum House to Kings Cross early in the morning, carried out a normal day’s work, took a train to Nottingham, visited, then took another train to Newark. I was relieved that I only had to do that once.

Initially, periods of remission were such that Jessica was able to continue working as an emergency duty social worker. The months of relief gradually became shorter and shorter, and the relapses longer and she retired on ill health grounds after about five years. She died on 4th July 2007.

116 comments

  3. This must have been painful to revisit, Derrick. I hope it was therapeutic. I truly wonder about some physicians and their oath to do no harm. My sister’s wife recently saw a doctor–a specialist–who was both unpleasant and unhelpful.

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  4. You are writing from a far distance, looking back, almost emotionless, which is understandable. A lot of time has passed, you have re-married, have a different life now. I am sorry you had to experience such a terrible loss so young. I am glad you found happiness again.

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  5. So sorry to hear how both of you had to face this kind of treatment at the hands of those doctors. And sorry for your loss. I can relate to the doctor’s response. I’ve been through it, but fortunately, I found good doctors – both when I had cancer and then when I had severe bone problems and couldn’t even walk. It must be hard to walk down this memory lane.

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  6. I have had both good and bad doctors over the years, have had cancer myself, and can painfully relate to this story. I am angered by the poor treatment Jessica initially received from the medical system, and saddened by the eventual loss of this bright and wonderful soul. She fought valiantly, and you did too, right along side her throughout the 10 years of her ordeal.

    Much love to you and Jackie, Derrick. ❤️

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    1. Thank heavens, Jessica had you in her corner. The emergency GP sounds like a real shite all the way around. What an episode. Glad she got better care. She sounds like she was lovely woman. Cancer is the worst.

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  9. Read this with tears in my eyes. Jessica was beautiful, no matter the length of her hair. How old was she when she died? And Liz is right. It’s a cruel disease. So many people in my family have had cancer, including me. Some have survived it; others have not. So very sorry to read what you had to go through with the doctors. Oh, gosh.

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  10. Jessica was fortunate to have you stand up for her in the face of an uncaring medical worker as she struggled to swallow. Women’s health complaints are often not taken seriously by medical professionals. Those years of her fight against cancer must’ve been very difficult for you both and for your children. Life can be cruel.

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  11. Thank heavens, Jessica had you in her corner. The emergency GP sounds like a real shite all the way around. What an episode. Glad she got better care.

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  12. I am so sorry that you and your family had to go through that. You are lucky to have such good pictures to remind your kids of the good times.

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  16. Derrick, I think you are a brave man putting this out for all of us to see. We can all learn something from this. For me one of the biggest lessons here is to stand up, protect and to fight for someone you love. Your story thus far has shown signs of this already, yet this is a fight that no-one should have been faced with. Absolutely no-one!

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    1. Well said, Anne. I get so angry with some of the uncaring attitudes still displayed by some medical staff. Nurses too, but not so often, it seems.

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  19. I am so sorry that your beautiful time with Jessica had to come to such a long and difficult end. It is unfortunate that some healthcare workers have to go out of their way to make such situations worse. ?

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  20. As merrildsmith said, it must have been painful to revisit. I thought medical incompetency was a recent development, but clearly it is not.

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  21. I’m so glad you shared Jessica’s story. Thank you, Derrick Life has dealt you much sorrow

    Such a pity you’re unable to locate those site pages that were here prior to giving your site a facelift

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  24. I’m sorry you and Jessica were treated with such cold negligence in the beginning. You did an excellent job as her advocate. It sounds like you both had a great deal of courage and perseverance, though it must have been hard. Thank you for sharing this difficult time with us.

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  25. More than sadness, I felt overwhelmed by the helplessness of Jessica’s situation. Our medical fraternity can be callous and uncaring to the core when they choose to be so. Apparently, patients, even those facing emergency conditions, are merely subjects and statistics for them. That is not to say we don’t meet the blessed kind.

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  27. Oh that was terrible. How could that doctor be so irresponsible?
    Jessica must have suffered so much. And for everyone in the family.
    In 2017 when my mother was diagnosed lymphoma, she used to to wonder how did that come because all her life she hardly had any health issues. Cancer came back twice after that. As of now she is fine. Thank you for sharing Derrick.

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  28. Thank God she had you by her side Derrick. You saved her life. There are a lot of people who should not be in the medical profession.

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  29. Like is not the correct button to hit, but WordPress does not offer another option. And the uncaring doctor/s almost offered you no other option on that fateful night. Thank goodness you would not be intimidated. It gave you another ten years together, although I am sure they were years of both sorrow and joy. I can recognise the process you are going through at the moment, recording all the good and not so good parts of your life. Such honesty is a privilege for all who read it, not the least of which are the family members who will treasure knowing about these years.

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    2. You have said it well, Gwendoline. Thank you for putting into words what I was thinking: this is a difficult story, and part of a personal process of documenting and categorizing, and I feel honored to be able to share it with Derrick and Jackie.

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  30. I can’t imagine the insensitivity of those people in emergency service. I’m sorry your wife was subjected to that level of “care”. It is frightening when one loses the ability to swallow or breathe, frightening beyond just concerned. She must have been very distressed, as you had to have been, too. I’m sorry, too, that her condition proved to be a slow path to her end. Even when we accept that we are mortal, that last day is one that one hopes is well into the future, that it won’t be painful or involve prolonged illness. I’m still trying to imagine how the two of you managed to get through that terrible night. It’s too late – or is it? – to offer condolences and hugs on the loss of your wife, for the terrible care she got that first night.

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  31. I had my own experience of uncaring (if not unethical) physicians in my mother’s last year, and it was not a pretty situation. It can be difficult to stand up against ‘established procedures’ in any case, but when a loved one’s life is at stake, it becomes necessary. You were strong enough to do it, thank goodness.

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  35. It’s hard to decide if it is one individual or system in general makes is difficult for patients and their families in crisis. Sorry to read about all this.

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  37. There’s so much I don’t know. And I’m sorry for that. I knew about your first wife. I had no idea about this experience. Multiple myeloma? Such a horrible disease. My heart aches. It is a wonder you chose the side of light my friend. For few who experience this loss would have the will. It only makes me admire you the more for the man you are. A man anyone should be glad to have in their life in some way. I deeply wish you hadn’t been honed but these experiences. You are such a bright soul despite all and it radiates from you.

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      1. I went to bed thinking I wished I had read everything you wrote in Knight’s Tale and how frustrating it is that I’m not online much and seem to never have enough time to read what I WANT to read. I hope (selfishly of course) you one day put all of this into a book / memoir? Of course if you did I would love to help you do that. But truthfully it works as a powerful testimony without needing to cut down trees. I’m just a luddite.

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  39. Your life has been touched by such a mix of happiness and sadness. We celebrate your good times with you and are grieved by the sad times. Your intervention to save Jessica’s life reminds me of Mum’s first husband’s diagnosis. She remembers taking the phone from his doctor’s hand so she could speak to the consultant rather than him, although she was young and timid back then.

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  41. Big hugs to you, Derrick. Thank you for adding the part about what would have happened had you not stood firm (Several Times!) Very good to hear that you followed your gut and saved Jessica’s life that night. The pictures of the haircut make one love her, don’t they? what a day that must have been for all of you. Big hugs, Derrick

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  42. Hi Derrick, I am really sorry to read this post and learn about your wife’s passing. I thought perhaps you and Jessica were divorced. The initial poor assistance you had from the NHS seems fairly common in London, but the treatment seems better in the smaller towns outside of the cities.

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  43. Those doctors! Mine provided no help until the fourth month of my illness, which was too late. Pericarditis will not go away. I had an excellent doctor, but he retired.

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  44. Derrick, what a small word, that you would be asked to counsel this horrible GP. It also sounds like your health care system does not believe in the value-based care model. To me valued based care is the way to go as it considers the patient experience and outcomes, as well as the total cost of care. The gem of it is risk is being shifted onto the providers, from the payers. The providers will be responsible for the risk of inappropriate or ineffective care and are only reimbursed for both team-based care and preventive services, which include early detections. Although Jessica was not able to receive this at least in the beginning, you were a wonderful advocate and husband. I am sure you two had a beautiful life, and you have the photos to prove it.

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  46. That must have been much tougher to write than it was to read, Derrick. I’m so sorry. As for the docs, we all get things wrong, but, as in all walks of life, a little less arrogance and more listening and humility wouldn’t come amiss sometimes. Bless you.

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