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Diary of a Mesothelioma Victim
By asbestoshub | March 28, 2009
Parts of a diary kept by a UK man as his life drew to a close while he suffered from mesothelioma was posted on the Daily Mirror website.
Ken Sunderland passed away in late March 2009 but his daughter released the diary in hopes it would help others understand the disease and what it does to the body.
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… 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… 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… I became increasingly breathless and developed constant aching in my chest and began to feel quite ill… 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.
Mr. Sunderland goes into more detail as the disease progresses and the treatments become painful.
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…
As his condition deteriorated, Mr. Sunderland underwent surgery and chemotherapy.
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.
Mr. Sunderland was going to enter a trial being conducted in Germany but did not make it until the end.
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… 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”.
There is more but the diary unexpectedly ends. Rest in peace Kenneth Sunderland.
