Ken Sunderland's mesothelioma diary

By Nick Sommerlad on Mar 26, 09 12:25 PM in Personal Stories

Ken-Sunderland.jpg

We were very saddened to hear that Ken Sunderland died of mesothelioma last Friday.

My colleague Emily spoke to Ken before he died and he was a strong supporter of our campaign.

His daughter Joanne has sent us the diary that her "lovely Dad" kept until the very end. We're posting it here in the hope that it helps others in the same terrible position.

What shines through is Ken's priceless sense of humour in adversity and his efforts to discover all he could about the disease taking over his body.

Here is Ken in his own words:

In April 2006 I had a wonderful Golfing holiday in Florida with a bunch of blokes calling themselves, 'The Friendship Golfing Society'. The last night was finished off in grand style at the Spanish Wells Golf and Country Club with US versus UK Karaoke fuelled by enormous G & T's. I think we won but can't be sure. I know we lost the golf match. The next morning I did not feel great and put it partly down to the excesses of the previous night but felt that it was a little more than that. I was a bit tight in the chest and suspected an infection setting in. The long journey ahead seemed a bit daunting but it turned out there were many opportunities for sleep and rest and we all got safely back to Newcastle eventually despite delays and chaos in Miami and Paris.

My symptoms persisted and I eventually consulted my GP and complained of chest discomfort and wheezing. He asked if I had ever been exposed to asbestos and I replied oooyezzz sounding like Churchill the insurance dog. From 1959 when I was 17 years old for a period of 15 years I had worked in the shipbuilding industry as a draughtsman and engineer. During that time I visited almost every shipbuilding and repair yard in the UK as well as others abroad. Most of the visits coincided with 'fitting out' times when asbestos insulation application was at its peak and plant rooms in which I spent a good deal of my time were particularly prone to asbestos dust which got everywhere and into everything even making it difficult to see from one side of the room to the other at times.

I never worked directly with asbestos but at the end of the day it was usual to hose down boiler suits with compressed air to get rid of the excess.

Of course no one was made aware of any dangers and the asbestos was applied and handled in a cavalier manner without thought of precaution.

My Doctor said that whilst cases of mesothelioma were rare they were becoming increasingly common and it would be best to rule it out. I was duly despatched for a chest X-Ray at Alnwick Infirmary on 15th May 2006 and the results were available within a week and revealed a small pleural effusion on the left side. It was decided that I needed to be examined by a chest consultant and the necessary paperwork was sent off to the NHS. At the beginning of June I again consulted my GP and I said I was concerned at the uncertainty in respect of length of time it could take before an appointment would take place and given the potential seriousness of my condition we agreed that he would also contact the Nuffield Hospital to arrange an early private consultation and this was arranged for 13th June. I became increasingly breathless and developed constant aching in my chest and began to feel quite ill. On Monday 12th June I was admitted to Wansbeck Hospital A & E. The Nuffield consultation was cancelled and I was now 'in the NHS system' and naively oblivious of its shortcomings!

In A &E I was examined promptly, wired up like Frankenstein's monster and given the full range of tests and checks considered desirable. This included a needle aspiration of fluid from the pleural cavity. The junior doctor who performed this procedure looked about 18 years old and ready for a Bigg Market night out, complete with bare midriff and jewelled belly button. OK, so I took my eye off the ball momentarily. I was brought back to reality with a pain in my back like a 1000 volt electric shock causing me to elevate completely off the bed. My blood pressure dropped like a stone (to 60 over 27 if I remember correctly) and I almost fainted. I think she did it on purpose!

I was eventually transferred to Medical Ward 2, a busy ward full of mostly ex miners all with pneumoconiosis and hacking coughs. Outstanding compensation claims were one of the favourite talking points and some said they had been waiting for five years and had still not been paid. I wondered who fought their legal corners for them?

My stay in Wansbeck Hospital lasted for 5 days but seemed like ten. Not having been hospitalised since a child I was not prepared for the experience. I was admitted on a Monday morning. Consultants at Wansbeck only do their rounds on Thursdays so Monday is not a good day to be admitted! On the upside it is much better than Friday! I had many questions but was usually told by whoever I directed them to that I would have to wait until I had been seen by God the Consultant. I had three days of 'observation' with four nights of sleep deprivation and would have been much better off at home! During my stay, I had little to do but observe things going on around me and make mental notes of anything of interest. I began to learn medical terminology and the names and functions of hitherto vague and unseen body parts and which bit joined on to what bit. I began to realise that ignorance could truly be bliss!

I watched the cleaner at work, systematically missing exactly the same bits each day!
The food tables which were slid into position over your bed at mealtimes were clearly multi functional. The cleaner used mine for her plastic bottles and cleaning cloths as well as putting my drain bottle on to it when she needed to clean the floor. Urine bottles full or empty were often in pride of place on the table also. The tables were given a spray and wipe down occasionally but not every day. Each had a small raised wooded rim around I think 3 sides. In the angle of the rim and the table was trapped a congealed grey accumulation of what I assume consisted of old food, detergent and god knows what! A micro-biologist would have been ecstatic faced with such a plethora of challenging wriggling goodies.

I recall a large stain on the floor reaching from my bed toward the centre of the ward. This stain had clearly been machine polished over on a daily basis and was encapsulated in a deep gloss. I realised this was the same colour as the fluid in my chest drain bottle, I had the uncomfortable feeling that I knew what it must be!

My bed was at the end of the ward and I was fortunate enough to have a window of the aluminium sash type which opened vertically. When it closed, it was into an inverted channel and when open, this channel was exposed. The bottom of this channel would have the previously mentioned biologist in 7th heaven judging by the vast variety of weird coloured growth abiding there.

I pointed it out to the cleaner. 'Errrrr', she exclaimed in horror. 'Not my job, I only clean the windows inside, it's the window cleaners'. 'But he won't see it' I said 'because the window has to be shut when he cleans outside'. I pointed it out to the Junior Doctor who came each day. 'Errrr', she said in horror 'and said she would mention it'. I pointed it out to the Ward Sister, 'Errrrr', she exclaimed in horror and said she would report it. I suspect that if I returned now to the same ward some 2 ½ years later it is not unlikely that the problem remains in place.

During my stay I underwent a blind needle biopsy procedure on the ward. This involved pushing a screw-ended needle in to my back which was then twisted in to the pleura and then withdrawn, removing a core sample. It was only later in that year at a Mesothelioma Conference I listened to a Senior Oncologist say in his presentation that no patient should be subjected to this procedure it being totally antiquated, unreliable and with dangers of infection and tracking. I then recalled that this procedure was carried out with me sitting on the edge of my bed with the hole in my back no more than a metre from the window biological culture channel...

An elderly chap was in the next bed to me and his wife was in the ladies section of the ward at the other side of the corridor. Late one night, she was tending to her husband. She rang the nurse call alarm and when the nurse arrived, asked if he could have a urine bottle please. 'We don't have any because there is a shortage and none have come back from sterilising yet and the hospital has run out of disposable ones'. 'Well what is he supposed to do' asked the man's wife? 'He will just have to hold it in' said the nurse. I wonder if this was straight from the "Patient Care Manual".

God finally arrived with his white coated file carrying entourage of juniors and students on the morning of the 15th June where my case was discussed with the whole ward and I was prodded and examined by each white coat. God spoke unto me and said he would return later and insert a drain in my chest to relieve the pressure and pain. At 5.00pm he performed his miracle and 1.0 litre poured out within the hour and a total of 2.9 litres was drained off over the next day into a large bottle. At the end of the day I was sent home with instructions that I could return at any time if I felt the need for further plumbing.

On 29th June Pam and I were back at Wansbeck for a further consultation. We were told test results were inconclusive but that mesothelioma was suspected. I asked what the prognosis was for me. 'Very unpredictable, but assuming it is mesothelioma it could be only months but I stress it is very unpredictable'. Now that sort of information hits you like a brick on the back of the head. You try to remain calm and keep your next question pitched within 2 octaves of the last one. I can't remember that question now. Shows how calm I managed to stay!

Pam and I drove home in relative silence. When we got there, a flood of tears from me and hugs from Pam helped to relieve my tension. The hardest thing to deal with at that point was getting my head around how to break the news to family and friends. How to deal with them being upset themselves and how to be strong for them. I did not really want to face anyone at all. Cowardice was setting in.

Fortunately Pam well understood this and shielded me from the many telephone calls over the next few days and she patiently and calmly repeated our story many times.
I went back to Wansbeck for more drainage on the 30th June. I rang first and was told to come in at 9.30am. I saw the Junior Doctor on Ward 2 briefly at around 10.00am and she promised to return and insert the drain before lunchtime. Several requests to the nurses for information as to her non-appearance drew complete blanks and the Doctor did not return until 4.00pm. She then inserted a drain and this yielded a miserly 0.5 litres. It will be understood I was not in a happy frame of mind with the previous day's prognosis sitting on me like a lead weight. With limited time ahead I felt I could have done without wasting yet another day sitting waiting for a doctor who was lacking basic courtesy or awareness of any patient accountability. It was 6.00pm before the drain was removed and I was allowed home again.

I asked for information about procedures for compensation during one of my visits to Wansbeck Hospital and ultimately and happily settled on Thompsons Solicitors to look in to my case for me. They dealt with this promptly, efficiently and very knowledgably and I could not fault them in any way. Specialist nurse opinions, forensic accountant opinions and eminent oncologist opinions were sought and duly obtained and incorporated in the claim document which was finally settled some 14 months later, although received in several stages up to final payment.

I also asked for information on social services and was given contact details. A competent and efficient chap paid me a home visit and his help in completing some quite complex government forms was gratefully received.

An appointment was made for me to attend the Freeman Hospital and I was admitted there on 13th July for an operation the following day. The consultant surgeon visited me and explained the proposed procedure which he said had a high success rate. A Video Assisted Thoroscopy (VAT) and talc pleurodesis procedure were to be carried out as well as biopsy of the pleura to confirm diagnosis. I asked if the procedure would rule out the possibility of radical surgery (Extra Pleural Pneumonectomy (EPP)) as a further option. I was told it would not but such a procedure could not be carried out if the cancer had spread to the lymph system and particularly the pulmonary media-steinal lymph node. I was advised that my X rays indicated that it had spread to that node though it would be possible to carry out a small operation and biopsy to confirm the situation.

We all know that hindsight is a wonderful and fairly useless thing but the EPP operation depends entirely on early detection. The questions arise:

a) Was early detection possible in my case and what if anything was or could have been done to assist this in the period between my initial presentation to my GP at the end of May and the confirmed diagnosis of Pleural Mesothelioma on 28th July some 10 weeks or so after its first mention as a possibility?
b) Who takes responsibility for ensuring that everything is done to allow early diagnosis to be made?

The Patient can't be expected to do it. They are unlikely even to have heard of mesothelioma let alone be in a position to fully understand their situation.
I was given premedication and went off to theatre in quite a cavalier fashion. I woke up feeling dopy but comfortable in a recovery ward and was soon transferred from there into the care of ward 25 which had 6 beds arranged in sets of 3 on each side of the ward. I was hooked up to a chest drain and a vacuum line with plastic tubes in my back and I had a canular in the back of my hand through which morphine was administered. The dosage was push button controlled by myself in response to pain but I needed only a small amount. Night time on 25 was not a great experience. Apart from being unable to lie comfortably tubed up as I was, bleepers and buzzers were constantly sounding as drips needed changing round the ward and temperatures and blood pressures were checked and monitored at regular intervals. Nurse call alarms were frequently operated and attached conversations were sometimes ongoing at volumes not conducive to rest or sleep.

The next morning I was transferred into my bedside chair. I was told it was important that I sat up to assist drainage and recovery. My bed, which belonged apparently to the high dependency unit was then nicked, wheeled away back to its home where it was urgently needed. Unfortunately it appeared that no-one had checked that a replacement was available for me and though I desperately needed to lie down, I could not take advantage of the allocated afternoon quiet period because a bed had not been found. It was late that evening before I got a bed. My chest ached and my breathing was laboured.

One of the big problems I had related to toilet facilities. Urine bottles were fine but I needed to find my way to the WC for more than that. I was in the middle bed in the ward and the WC was on the other side of the wall behind me. The access door into the WC was at the top of the ward in the corner next to the window, and this door led into a storage/utility room through which the WC was accessed. In terms of actual distance I think it was close to 10 metres walk in 4 directions to negotiate the route. Now let's add the personal baggage I had to drag with me. My chest drain bottle and tube. A wheeled stand for the morphine syringe and driver. My vacuum tube, all of 12 metres or more in length and plugged into my back and into the wall by my bed. Now add 4 visitors to the patient in the bed next to me and note their annoyance at having to move to allow me to pass by them with all my bits and pieces to get to the WC. This performance was repeated on return trips. On one occasion a visitor had placed their chair on my vacuum tube, anchoring it and blocking it completely!

As an aside, I know it is impossible to have a cleaner on permanent standby but when a number of patients and visitors share a communal WC you quickly find out that others don't necessarily share the same standards of hygiene as yourself.

My situation deteriorated rapidly when it became clear I could not pass urine and my bladder became painfully extended. Simultaneously I realised that the operation had left me with chronic constipation. So I had two first time experiences in the course of one day. I was catheterised (absolute heaven) then given two enemas to get things moving (not a pleasant experience).

The next night, things deteriorated further. An infection set in around the catheter and I was painfully passing blood and protein in the early hours. I believe I was then at my lowest point of despair and ready to give in. The nursing staff members were sympathetic and excellent and I was quickly on antibiotics and re-catheterised. Everything returned to a semblance of normal order and my days were brightened by daily family visits.

I remained in the Freeman until discharged on 19th July. Before discharge, I was visited by one of the surgical team. I asked him about the operation and whether or not an endoscopy procedure had been carried out as well because I felt my mouth and throat were particularly tender. He confirmed that it had. I noted that I had not been advised of this beforehand, I asked him for advice as to anything I should be doing on my return home. His totally unsatisfactory and I felt, patronising reply, was, "go and have a few bar meals". Cheeky b%!@#!d.

There followed a particularly bad week, my surgical wounds were sore and the whole of my left side felt sort of numb but quite painful to the touch. My first night back home I found I was able to be comfortable only on my left side but not able to sustain that position for a whole night. In the early hours of the morning I turned over and felt a rush of fluids go from left to right and I had to make a hasty retreat to the bathroom, where a fit of sickness and coughing produced lots of blood and "material" which I could not identify. I had not been warned that this might happen. I think was another new low point. I thought I was dying.

Things did improve over the next few days, with visits from my GP and the district nurse and my birthday on 22nd July was celebrated with a BBQ in the garden and I was feeling somewhat better but still very weak.

I had an appointment at Wansbeck Hospital on 28th July and at this time I was told that mesothelioma was a confirmed diagnosis, and it was agreed that I would be placed in the hands of the oncology department where ultimately I received six courses of chemotherapy which combined Alimta and Cisplatin, administered at three week intervals.

In August, I had several visits to hospital where bloods and lung function tests, x-rays and reviews were carried out. On 9th August, I started taking steroids in preparation for the first chemotherapy session on 10th. The chemo took just short of 8 hours, was painless and I was well enough to play golf the following day.

A CT scan showed that there was a slight reduction in the tumour mass and that the mesothelioma was classed as being in a stable condition.

I experienced the usual symptoms of chemotherapy including nausea and tiredness and minor hair loss (not on my head), but still well enough to function fairly normally, playing the occasional game of bowls and golf every week. One of the most troublesome symptoms, though, was night-time sweats where my pillows, bedding and pyjamas would be absolutely soaked. I took to wrapping tea towels and towels around my neck on retiring to bed to help soak up the sweat. This continued right throughout the 18 weeks of chemotherapy and beyond. I dutifully filled in my daughter's - "Ken's How Am I Feeling Today Record" - on pain of death, giving scores from 1 to 10 against many different categories.
I got in to a routine of CT scans performed at 6-week intervals, and eventually finished the chemo cycle number 6 on the 23rd November. I noted that my tolerance to the chemo was being further tested at every session and on the last one, they reduced the Cisplatin dose because of my symptoms and I was extremely tired for a full week after the last session. At one point I was given a blood transfusion because of anaemia in September. I don't recall being warned of the possibility or indeed of the existence of, peripheral neuropathy until I was told that the tingling in my hands, but particularly my feet, was due to this condition, which in turn was due to the chemotherapy. The problem in my hands was, and remained, very minor. The problem in my feet grew increasingly worse with a numbness which has continued to this day. In response to my questions at the time on this neuropathy I was told that it was unpredictable but likely to last up to 18 months before recovering - however it ultimately went on much longer than this.

My daughters Joanne and Shirley were unceasingly vigilant in their trawling of the internet, and my files on research of mesothelioma increased to four or five A4 boxes. It became increasingly obvious that there was no single point of information or resource, and that you had to work hard to find out what was going on in this country and indeed the rest of the world.

I enquired at Wansbeck Oncology Department if there were any clinical trials available in the UK specific to mesothelioma and was told that they would attempt to find out for me. Information came back from them of a trial at the Northern Cancer Unit involving a drug called SAHA and after assessment, I was duly invited to take part in that trial. This involved taking capsules on a daily basis and attending the clinical trials unit at Newcastle General Hospital on a weekly basis where I was fully checked out each week in respect of blood analysis, lung function, temperature etc, and every 6 weeks I was given a CT scan to monitor any changes in the lungs.

I continued on the SAHA trial until March 2008 at which point the tumour again became progressive and it was deemed necessary to end my participation in the trial.

Some time after this I started to develop a productive cough which usually carried on in periods of two to three weeks and then nothing for perhaps four weeks. The fluid (for want of a better word) released could be in a single coughing session up to half a pint in volume, the colour of milky tea and the consistency of custard. Samples were sent off for analysis and precautionary courses of antibiotics were prescribed before we went off on yet another last holiday in June 2008. These were discontinued when the lab results showed no infection.

Whilst on the SAHA trial, information came to light about new American radiotherapy, based on weapons-guided technology, with the ability to deliver substantially higher doses of radiotherapy with much more accuracy than conventional means - called CyberKnife. I spent a considerable amount of time pursuing information on this and passed it round the Northern Cancer Unit where opinions were quite negative as to its potential effectiveness. I was given some encouragement from a CyberKnife clinic in Munich where it was suggested that the larger metastases on my right lung could possibly be treated by CyberKnife but ultimately decided on the advice of the Northern Cancer Unit specialists that because of the large number of smaller metastases following on behind it would be unadvisable to proceed down that route.

At this time there were around 140 CyberKnife clinics worldwide, but none in the UK. As of today, one is now operating in the Harley Street Clinic in London.

Next on the agenda was an investigation of a trial being carried out at Southampton University, they required my original biopsies from the time of the pleurodesis and due to the vagaries of the NHS these duly took 6 weeks to reach Southampton. Unfortunately it turned out that my cancer cells did not have the particular marker required to meet the criteria of the trial so another 7 weeks of precious time wasted.

At a mesothelioma conference in Gateshead town hall I met a consultant from London, and in pursuit of further options, arranged to visit him at St Barts hospital. As a result I was offered more chemotherapy but of a different combination than that which I'd had previously. I discussed this with my Oncologists at Wansbeck Hospital and instead decided to accept their offer of further Alimta and Carboplatin chemotherapy, which I started in July 2008. I had this for three sessions at three week intervals after which time it was stopped because of the toxicity and severity of the side effects in September 08. At this point, some of the smaller metastases had disappeared from the CT scan and the tumour had not progressed.

The CT scan on 30th November showed traces of multiple peritoneal nodes and a trace of ascites. I started having problems with the distended abdomen which was uncomfortable and affecting my mobility.

In early December 08 I started on a course of steroids to assist with appetite and breathing, both of which were a problem at that time. They appeared to work effectively as my appetite improved and my general wellbeing also.

Around this time, information surfaced regarding a trial being carried out in Germany in the Frankfurt University Hospital. This was a process of chemotherapy called chemo-embolization whereby chemotherapy is administered directly in to the tumour via the arterial system. Research showed some very positive results and I made contact with a Plymouth patient who had been on the trial programme for less than a year and her tumour had showed over a 50% reduction (now 73%) and she had been told that it was dead and unlikely to revive.

I contacted the programme Director, Prof Vogl, and sent him a copy of my latest CT scan. His response was positive in that he said he thought he would be able to help me. I duly made arrangements to travel to Frankfurt and had a first session on 3rd February 2009. This was all done in a one day visit and involved a high resolution MRI scan, a CT scan and the embolization procedure, and from entering the hospital at 11am, I was in a recovery ward shortly after 2pm. The procedure was painless and the side effects limited to tiredness and the usual constipation following chemotherapy.
Prof. Vogl advised me that I would need 3 sessions at three week intervals and I made a further appointment for 6th March.

On 12th February I was put on a course of diuretics by the NCCT trials unit to combat the potential ascites and arrangements were put in place to have an ultrasound scan to assess the extent of this condition. Within the next two weeks, I met with a palliative care specialist and arrangements were made to add further diuretics to those already prescribed. I made contact with the specialist through the suggestion of my GP to discuss my case with him and to establish his thoughts as to the options that might be open to me in view of the disease progression. It must be understood that I am extremely anxious to avoid hospital admission if at all possible, particularly in view of the earlier experiences described.

Unfortunately due to a communication breakdown between hospital staff, the ultrasound scan was arranged during a planned trip to Portugal and it was subsequently postponed until our return on 3rd March.

This ultrasound revealed that the distension was in fact caused not by ascites but by partial bowel obstruction which in turn was apparently being caused by peritoneal metastases displacing part of the small intestine. The diuretics were discontinued with immediate effect. A chest x-ray at the same time also showed increased fluid in the left lung, not suitable for tapping.

Unfortunately I found myself insufficiently well to keep the 2nd appointment in Frankfurt on the 6th March. In an email from Prof Vogl when advised of this situation advised me by email that he thought I would be better soon and to "keep my ears up".

From initial diagnosis to the present day, I have lost count of the number of "last" holidays that Pam and I, and the family, have taken. We have enjoyed every single one of them. I have also managed to continue playing golf and bowls on a regular basis.

Messages for Professionals:

Patients need a single point of contact to find out all they need to know about this disease and the options open to them (- perhaps the proposed National Centre for Asbestos related disease could act as this point, a hub, for all information dissemination - for what's happening in the UK and also across the rest of the world). This point of contact needs to be able to cater for a wide spectrum of patients with different attitudes, views and information needs.
Take a holistic approach when dealing with patients and avoid focusing solely on your particular area of expertise.
Think about how you speak to patients, what you say and how you say it: how would you want to be spoken to?
Be guided in your communications by the level of knowledge that the patient has, needs, and actually wants. If they want lots of information, a 10 minute consultation slot is not appropriate.
Show willingness to embrace and explore new technologies and developments and not dismiss them out of hand.
Acknowledge that some patients know just as much as oncologists about their own cancer and its potential treatments. View consultations as a two way learning process.
Deliver care that takes into account the individual and diverse needs of each patient.

Suggestions for newly diagnosed patients:

Get all the facts together about where and when you might have come in to contact with asbestos.
Decide how involved you want to be in your ongoing care and medication decisions and communicate this to the people delivering your care.
Decide how much you want to know or understand about your disease - some people, like myself, want to know everything; others I have met, want to know as little as possible. However, in my experience, I have found that information about different options was not offered to me, it had to be sought and even then, from a multiplicity of sources.
Think about how you feel about the illness now, the options you've been presented with, and what you want to do about it now.

Ken Sunderland, March 2009