Following Richard Lynham’s passing on 6th May, I thought it appropriate to publish his letter of 10th April, sent from his hospital bed.

His covering note begins:

‘Dear Kevin, I attached notes which might be of use for the BGS newsletter. On the other hand they maybe too formal, but I thought if you were to access my medical records you could write the “doctor’s tale” to provided the case study as the ‘other side of the coin’. Best wishes Richard"

We publish this epistle verbatim. I did not take up Richard’s typical offer for me to review his medical records so I could triangulate his views of his medical history, as I did not feel it appropriate.

The Patient’s Tale
“From Executive Desk to Zimmer frame in Two Years - written in the fifth week of hospital

Outline medical background
I was diagnosed as having an atypical form of CML and associated arthritis in February 2003. Oral medication kept me active until February 2005. I was hospitalised with pneumonia and fits in this period, and shortly afterwards a constricted aortic valve was identified. Two weeks after discharge, I collapsed at home, the result of a further lung infection, massive diarrhoea (lasting for several weeks) and the strain on the heart. On coming to, I managed to crawl to open the front door, pull down the phone and dial 999. The first paramedic arrived in 5 minutes, the ambulance a bit later. I have little recall of what they did, but they must have radioed ahead because a team of doctors and nurses were waiting in A & E. Again, I have little recall of the 3 hours in A& E and only a fuzzy impression of my stay in CCU, before transfer to Haematology.

Gratitude
I am most appreciative of and grateful for the clinically excellent and dedicated nursing during my number of weeks stay in hospital. When you are seriously ill you see the NHS at it finest. Any whinges fade into insignificance in comparison to my thanks. I am also greatly indebted to my highly supportive neighbours.

Emotions and Euthanasia
Haematologists outlined their planned strategy, but also warned of a number of potential risks, which I appreciated. Initially I took little interest in developments and it was sometime before I decided to take a more active part in “fighting back”. In the very early stages I could not have cared less whether I lived or died and should happily have signed my own death warrant; later I was less pessimistic; but later still, tried to rationalise my thinking – I have no dependents or obligations and I will die anyway in some two or three years. Why then bother to struggle and why use such extensive medical resources now? Why not just a shot of morphine and bye-bye? On the other hand I would like to complete my Open University degree.

A patient’s observations

• Why is it, when the (excellent) physios urge you to make a little progress each day, they all disappear for four days over Easter?
• Some catering staff are excellent, ensuring your meal table is the right height, cereal packages open etc. Others just plonk the tray on the bedside table, well out of reach.
• As for doctors, they will move your side table (with the water etc.) to examine you and then omit to move it back.
• One porter brought me back from X-ray and just parked me with no access to the call button.
• Doctors love to ask you what your stool looked like, difficult to answer when the deposit is removed backwards from under the commode and only the night nurse knows.
• You can tell the pressure on resources when you go to X-ray at midnight.
• Don’t poo in your pants during nurse handovers – you could be stuck with results for an hour.
• It’s Murphy’s Law that if 3 out of 5 nurses go for their break, every call button will be activated.
• Clearly the system for bringing in other specialties to complement diagnosis and treatment works well. However, there seems to be little liaison on timing. The Consultant Rheumatologist and his acolytes swept in as part of his ward round with no warning to Haematology.
• There is an effective system for distributing in-coming mail, but for outgoing mail you are reliant on the goodwill of a nurse to post it on his/her way home.
• One of the worst problems is coping with 12 tablets, plus soluble tablets and liquid medication. High time the pharmaceutical industry made medication more user friendly for the frail patient.
• When I was able to “‘sit out” I was put into elastic- absorbent knickers. I asked to return to “Pampers” as I found it impossible to extract my penis to use the urine bottle.
• Eating has been a problem and I have made good use of milk-based supplements.

Prognosis
The results of the bone marrow biopsy will reveal what the CML is doing. There is uncertainty on how to deal with the aortic heart valve. The jury is still out on both issues. Colonoscopy tomorrow, to try and find cause of bowel disorder.

Next Move
Convalescent home and then residential care.”

Richard sadly was very weakened by his illness and exposure to probable C.Difficile diarrhoea. He passed away shortly after he penned his thoughts.
Through his testament, written while ill, it provides a poignant insight into the patient experience and serves as a salutary reminder that we should get to know the patient in addition to knowing their illness.

As was emphasised at his memorial service at St Anne’s Church in Highgate on June 2nd, Richard was a gentle Englishman with many sides to his personality, only some of which he chose to reveal to friends and colleagues at any one time.

It is one of the sad ironies of life, that he passed away at 67 years, an age which would put many of his contemporaries 10-15 years away from engaging with a care of elderly service in the UK in 2005.

May he rest in peace and whatever about “making trains run on time”, we can surely ensure the out going post is dispatched in a regular and dependable way for our patients’ sake.

Kevin Kelleher