In November 2007 my husband Derek went to Leeds Infirmary for his annual endoscopy investigation and because he had shown signs of anaemia it had been decided that a colonoscopy would be done. This was carried out and in early January 2008 the results were given as being clear, and they would send for Derek again in 6 months time. Unfortunately, we did not question why 6 months as this had been carried out over the last few years every 12/18 months, this was for Barrett’s oesophagus.
Life seemed to progress well until mid-January 2008 when flu took its toll on the family and we thought the same for Derek but as usual Derek refused to see the doctor. However after several nights of being really restless I made an appointment with the doctor. We saw the duty doctor of the day which was Dr Brain who immediately referred him to Pinderfields Hospital as an inpatient (it was later discovered that she thought it was pneumonia).
He was admitted to the admissions ward and put on oxygen immediately. He had scans, x-rays, ECGs and various other tests carried out and was moved around this department for a couple of weeks and then had a drain put in his side. This was later removed and the wound stitched before Derek was discharged on the 28 February.
On the 29 February received a phone call with an appointment to see a Consultant a Dr Blaxill and a Nurse called Joanne Bradley on Monday 3 March at Pinderfields Hospital. On 2nd March Derek had to be taken to the Local Walk In Centre for a new dressing to be put on the wound where the stitches were.
My husband was diagnosed with mesothelioma
On the 3 March we were back at the hospital and x-rays were taken and previous x-rays were shown to us. The diagnosis they felt was mesothelioma but further tests and an appointment was to be made with the Consultant Oncologist, Dr Stuart. The prognosis was Derek had months rather than years to live.
We were all very badly shaken with this news and had real difficulty in understanding where this illness had come from. Arrangements were to be made for a supply of oxygen to be delivered to our home with instructions of how to operate – it was all so sudden, so much bad news given at the same time!
On the 11 March we saw Dr Stuart and following consultation and discussion with Derek he was to book an appointment at St James’s hospital in Leeds for some radiotherapy but meanwhile, he asked that as soon as a bed was available he be readmitted to Pinderfields.
I’d never even heard of this terrible disease
Mesothelioma – what was this? Never heard of it. Couldn’t even say it at first never mind spell it. Check on the websites – couldn’t believe it! How did this happen?
The same day Derek was readmitted to hospital this time in the respiratory ward and on the 12 March another drain was inserted. He was again discharged on the 15 March and District nurses visited home to empty the drain at first once every 3 days. The family was also trained by the hospital to change the drain should it be necessary to do so. This was quickly changed to every day and more than one bottle of fluid drained. (The bottles were vacuum packed and sterile - very expensive also)
Despite continually asking questions about progress and diagnosis and whether an operation could be carried out very little information was being obtained. I believe I may have got cross with the nurse, but I was upset, devastated and wanted to hear some good news, but nothing changed. The nurse was, however, quick to ensure forms were filled in to claim relevant benefits, she had authority to sign the document and we were surprised how quickly things started to happen from then on. She even suggested that we take some legal advice to see if a claim could be made. Neither Derek nor I had even thought of this.
The appointment for radiotherapy was received for the 31 March but this had to be cancelled due to a drain being in place.
March was a difficult month for Derek - shortage of breath due to liquid in pleurex, uncomfortable, short tempered and frustrated due to pressure not being eased. It was thought to increase the amount of fluid being removed would perhaps ease the problem, and this proved to be a little better and therefore his food intake increased. He was never a big eater and would only eat if he felt like it, so we had obtained a large supply of liquid foods via the doctor. However a further problem was that his legs started to swell and a cough started which he could not get rid of and was distressing for him.
On a further visit to the hospital, he was again seen by the Consultant. X-rays were taken again and yet more fluid was removed. From then on 2 or 3 bottles a day were removed (with bottles holding approx one pint) He had difficulty in getting about, even a walk down the garden wasn’t easy and he really loved his garden and found this very hard to accept.
We contacted solicitors to discuss a possible claim
During this period we had also made contact with Mr Ian Bailey of Irwin Mitchell Solicitors and he visited our home to discuss whether Derek might be able to bring a claim against one of his former employers. Derek was very clear that he had been exposed to asbestos, but he did find it somewhat difficult. He was a qualified electrician and worked at many places during his working life and trying to remember how long and how many years with each employer took a while. Mr Bailey felt that despite the length of time since Derek’s exposure to asbestos, there was a case to be answered. Derek agreed and the claim moved swiftly.
It took a little time to locate the Company which had ceased to exist but eventually they located the insurers, and battle commenced. Letters, forms, telephone conversations followed and also meeting with a barrister, an asbestos expert and Health & Safety Person all of whom were very helpful. At times it got rather technical and very frightening, but we were always guided through it all and reassured.
In early April the fluid was removed daily because of the increased flow. A daily record was kept by the nurses and by me indicating the amount of this fluid which was taken off. He continued to be monitored and was seen by Dr Blaxill’s department on the lst May and 23rd May. By the end of May an extremely large amount had been drained off. It was difficult to understand where all the fluid came from. It was obvious the tumour had grown because where the drain had been inserted it now looked like a tennis ball on Derek’s side. No wonder he found it difficult to sit comfortably, despite every pillow, cushion and pads of different shapes and sizes that had been tried.
In June Derek was admitted to hospital
Early in June his feet were swollen although not thought significant by home visit from doctor. His feet were still swollen and then his stomach started getting quite enlarged. The district nurse on her visit on Sunday 8 June felt that an emergency doctor should be consulted. He was very quick to visit and decided that admission to hospital was necessary. I took Derek by car as he felt it would be much quicker than waiting for an ambulance. Again he was in Admissions Ward until being transferred back to the Respiratory ward. A drain was put into his stomach on the 17 June (a gravity drain) because of the swelling. On the l8 June he was again seen by Dr Stuart the Oncologist who decided to try one large dosage of radiotherapy, even though he still had a drain in his side because he felt it would make him a bit more comfortable. Arrangements were made for this to take place on Monday 23 June at St James Hospital in Leeds.
This turned out to be a very long day due to waiting for an ambulance as paramedics had to be on board due to oxygen being used, but once there we were seen very quickly and the radiotherapy given followed by another long wait for transport. Derek was made comfortable in a small room where oxygen was available but due to length of time we had to be transferred to a private ward on the top floor of the hospital to await the transport. He was given tablets for the pain and discomfort and eventually arrived back at Pinderfields in the evening where he was made comfortable although completely exhausted due to the treatment and long day.
When I visited the next day he was having the drain from his stomach removed as it appeared to have stopped. He was informed he could be going home on the Thursday. He was quite cheerful and looking forward to coming home, but alas this was not to be. On Thursday at 5 a.m. in the morning a phone call was received to say he had taken a turn for the worse and would I contact the family and go immediately to the hospital. However, we were too late and Derek had passed away at 5.10 after receiving emergency treatment. Our lives changed from that time on. The small consolation was that he was no longer in pain, although he must have kept a stiff upper lip in silence
A post-mortem and inquest needed to take place
We returned to the hospital later that day to collect personal items and to be informed what was to happen next. We were told that a post-mortem was to take place and the Coroner’s Office had been informed. The paperwork could not be completed because an Inquest had to be held and adjourned for a date to be arranged. Arrangements were made for the family to go to the Coroner’s Office, where I had to make a statement. Interim Certificates of Death were then sent to us via post. A date for the inquest would be arranged when we would be informed of the official outcome. The staff at the Coroner’s Office were very kind and sympathetic and were available to help in any way they could.
We informed our solicitor, Mr. Bailey, of what had happened, and the funeral of Derek duly took place. On the 15th October the inquest was to be re-opened due to the cause of death being unascertained. Mrs Nicola Handley of Irwin Mitchell came to support us through this ordeal. The Pathologist who carried out the PM was in attendance claimed that there was scaring due to a mild heart attack at some stage - however my family and myself were totally unaware of this. Also I do not believe even Derek knew of this, but apparently this was quite common. It was established that the mesothelioma had spread to the diaphragm and the lymph glands and lung. It had also spread from the lung to the stomach. The pleural cavity was suspicious of mesothelioma. He had been checked for prostrate problems but there were none. The tumour was examined for staining – asbestos fibres were found in each section of Derek’s lungs.
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The Coroner then gave her verdict - it was mesothelioma caused by asbestos exposure – Industrial disease.
Even though the months have passed, it is still very difficult to come to terms with, and the fact that it was not diagnosed before especially having been to Leeds at the end of 2007 and given the all clear. After all Derek and I had been married for 51 years and to suddenly find that everything is placed onto one of us when we had always done things and made decisions together has been traumatic to say the least. Even now a full night’s sleep would be a bonus and my blood pressure has only recently started to settle down. I have tried to absorb my time in finalizing paperwork and doing decorating jobs and garden in all of which previously had been done by Derek.
Nothing can replace what has been lost
We had an active social life and enjoyed our many holidays and at times I now find it very lonely. My daughter has had to consult a doctor because of sleeping and nightmares which have not disappeared some two years later. One goes through the stage of guilt and start questioning whether I should have been more observant and picked up any signs if there were any, it seemed to happen so quickly. Particularly so in view of the fact that at 8p.m. on the previous night he was laughing and looking forward to coming home the very next day. We did note how weak he appeared to be so why this sudden change? It was said that the nurse had difficulty in finding a pulse and had to try a couple of times but when we questioned the consultant there was no record of this set out. They found him at the bottom of the bed and called the crash team to resuscitate him without success. Our family Doctor and the District Nurses who had regularly visited were all shocked, they never thought it would happen so quickly – they had discussed the case with the Macmillan Team but thought it was not yet time for them to become involved so no support was offered.
The legal case was finally concluded by agreement out of Court, our grateful thanks to Mr Ian Bailey and his team, but we all know that nothing can ever replace what has been lost. Life goes on for us in a different sort of way with memories of a much loved husband, father and grandfather.