Ken Sunderland's diary giving his thoughts and experiences after being diagnosed with mesothelioma.
A wonderful Golfing holiday in Florida with ‘The Friendship Golfing Society’. The last night was finished off in style at the Spanish Wells Golf and Country Club with US versus UK Karaoke fuelled by enormous G&Ts. I think we won but can’t be sure. I know we lost the golf match. Next morning I didn’t feel great and put it partly down to the excesses of the previous night but felt it was a little more than that. I was tight-chested and suspected an infection. My symptoms persisted. I consulted my GP complaining of chest discomfort and wheezing. He asked if I had ever been exposed to asbestos. I replied “oooyezzz” - sounding like Churchill the insurance dog.
From 1959-1974 I worked in shipbuilding as a draughtsman and engineer. My work coincided with ‘fitting out’ times when asbestos insulation application was at its peak. Of course, no one was made aware of any dangers and it was handled in a cavalier manner, without 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.
Despatched for a chest X-Ray at Alnwick Infirmary on 15th May. Results revealed a small pleural effusion on the left lung. It was decided I should be examined by a chest consultant. The paperwork was sent off to the NHS.
I consulted my GP. I was concerned at the length of time it was taking for an appointment. Given the potential seriousness of my condition he contacted Nuffield Hospital to arrange a private consultation for 13th June. However, on 12th June I became breathless and was admitted to Wansbeck Hospital A&E. I had three days of ‘observation’ before being seen by a consultant. I noticed that standards of cleanliness were poor and standards of care caused some concern. A fellow patient was told he couldn’t have a urine bottle because of shortages, and he’d have to “just hold it in”.
I underwent a blind needle biopsy procedure on the ward – involving pushing a screw-ended needle in to my back, twisting it in to the pleura and withdrawing it, removing a core sample. It was only later in that year at a Mesothelioma Conference, a Senior Oncologist said that no patient should be subjected to this procedure - it being antiquated, unreliable and a cause of infection.
On 29th June Pam and I were back at Wansbeck for a further consultation. We were told test results were inconclusive but mesothelioma was suspected. I asked what the prognosis was for me. I was told: “Very unpredictable, but assuming it is mesothelioma it could be only months but I stress it is very unpredictable.”
That sort of information hits you like a brick on the back of the head. 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.
Another hospital appointment, another poor experience. A 9.30am appointment for a pleural drain. Despite assurances, it was 6½ hours later before the drain was eventually inserted and yielded a miserly 0.5 litres. Understand that the previous day’s prognosis sat on me like a lead weight. With limited time ahead I could have done without wasting yet another day sitting waiting for a doctor who lacked basic courtesy or awareness of patient accountability.
Not all of my experiences were poor. Thompson’s Solicitors, who looked in to my case were prompt, efficient and knowledgeable. I could not fault them. Efficient help from Social Services to complete complex government forms was also gratefully received.
A Video Assisted Thoroscopy (VAT) and talc pleurodesis procedure were carried out, with a biopsy to confirm diagnosis. I was told that the possibility of radical surgery - Extra Pleural Pneumonectomy (EPP) was ruled out as the cancer had spread to the pulmonary media-steinal lymph node. We all know that hindsight is a wonderful and useless thing, the EPP operation depends entirely on early detection and I wondered if this could have been possible in my case and who should take responsibility for ensuring everything is done to allow early diagnosis. 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 options.
Following my operation, I woke up feeling dopy but comfortable in a recovery ward and was transferred into a ward with 6 beds.
Next morning I was transferred into my bedside chair, ostensibly to assist drainage and recovery. My bed, which belonged (apparently) to the high dependency unit, was nicked. No-one checked that a replacement was available even though I desperately needed to lie down. It was late that evening before I got a bed. My chest ached and my breathing was laboured.
A big problem was toilet facilities. I dragged a chest drain bottle, a wheeled stand for morphine and 12 meters of vacuum tube, whilst navigating the 4 visitors at the next bed (one of whom placed their chair on my vacuum tube and anchored it completely!).
I was discharged on 19th July. Before this, I was visited by a surgical team member. I asked him whether an endoscopy procedure had been carried out because my mouth and throat were tender. He confirmed that it had, even though I’d not been advised beforehand. I asked him for advice about anything I should be doing on my return home. His patronising reply was, “go and have a few bar meals”.
There followed a particularly bad week. My surgical wounds were sore and the whole of my left side felt numb and painful to touch. At home I found I could be comfortable only on one side but was unable to sustain that position for a whole night. When turning over I felt a rush of fluids go from left to right and experienced fits of sickness and coughing. I had not been warned that this might happen. This was another new low point. I thought I was dying.
Things improved 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. 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. It was agreed I would be placed in the hands of the oncology department where ultimately I received six courses of chemotherapy which combined Alimta and Cisplatin.
A CT scan showed a slight reduction in the tumour mass and the mesothelioma was classed as being “stable”.
I don’t recall being warned of the possibility (or existence of), peripheral neuropathy until I was told that the tingling in my hands, but particularly my feet, was due to this condition, because of chemotherapy. The problem in my feet grew increasingly worse with a numbness which has continued throughout. I was told it was unpredictable but likely to last up to 18 months before recovering. It never stopped.
My daughters Joanne and Shirley were unceasingly vigilant in their trawling of the internet, and my files on research of mesothelioma increased to 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 let alone the rest of the world.
With the Chemotherapy at an end I enquired at Wansbeck Oncology Department if there were any clinical mesothelioma trials available in the UK. They found a trial at the Northern Cancer Unit involving a drug called SAHA. After assessment, I was invited to take part. This involved taking daily capsules and attending Newcastle General Hospital clinical trials unit each week for a full check up, and 6-weekly CT scan to monitor changes in the lungs and I continue with this throughout 2007.
At a mesothelioma conference in Gateshead town hall I met a consultant from London. In pursuit of further options, I arranged to visit him at St Bart’s hospital. I was offered more chemotherapy in a different combination. I said I would think about it.
I continued on the SAHA trial until March 2008 when the tumour again became progressive and it was deemed necessary to end my participation in the trial. Information came to light about a 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 though where it was suggested that the larger metastases on my right lung could possibly be treated by CyberKnife. I 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 the CyberKnife route.
I discussed St Bart’s offer of further chemotherapy with Oncologists at Wansbeck Hospital but decided to accept their chemo combination instead. I had 3 more chemo sessions at three week intervals. It 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.
Next on the agenda was an investigation of a trial at Southampton University. They required my original biopsies from the time of the pleurodesis. Due to the vagaries of the NHS these took 6 weeks to reach Southampton. It turned out that my cancer cells didn’t have the particular “marker” required to meet the criteria of the trial. Another 7 weeks of precious time wasted.
CT scan showed traces of multiple peritoneal nodes and a trace of ascites. I had a distended abdomen which was very uncomfortable and affected my mobility.
I started on a course of steroids to assist with appetite and breathing, both of which were a problem at that time. They worked effectively.
Information surfaced regarding a trial being carried out in Germany in the Frankfurt University Hospital. This was a process of chemotherapy called chemoembolization 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’d been on the trial programme for less than a year. Her tumour was reduced by over 50% (now 73% and she’s been told it’s dead and unlikely to revive).
I contacted the programme Director, Prof Vogl. I sent him a copy of my latest CT scan. He said he thought could help me.
I travelled to Frankfurt. I had a first chemoembolization session on 3rd February. In one day, an MRI and CT scan, and embolization procedure were completed. From entering the hospital at 11am, I was in a recovery ward by 2pm. I would need 3 sessions at three week intervals. 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. Arrangements were made to have an ultrasound scan to assess the extent of this condition.
The ultrasound was arranged during our planned trip to Portugal - a mistake caused by poor communications at the hospital.
I contacted a specialist to discuss my case and look at the options open to me in view of disease progression and palliative care. I was extremely anxious to avoid hospital admission.
The re-scheduled ultrasound revealed that my stomach distension was caused by partial bowel obstruction which was caused by peritoneal metastases displacing part of the small intestine and not ascites. The diuretics were duly stopped. A chest x-ray at the same time also showed increased fluid in the left lung, not suitable for tapping.
Even though there was some indication that my tumour had reduced in size, I was too poorly to keep the 2nd appointment in Frankfurt on 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”!
20 March 2009.
Ken died aged 66.
Ken’s messages for professionals:
• Patients need a single point of contact to find out all they want to know about this disease their options (perhaps the proposed National Centre for Asbestos Related Disease could act as a hub for 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 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 often about 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.
Ken’s 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
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