The Journey That Changes Your Priorities - Sue's Story

My husband Keith had two main "claims for fame" and passions of his life. Firstly, his legendary work ethic, exceptional skills and commitment to his professional life in heavy industrial engineering.

Secondly his tremendous fitness and stamina in pursuing his sports - high mileage speed cycling and long distance motor biking.

The first was to eventually put his life at risk as a result of industrial neglect and exposure to asbestos as a young man, leading to a diagnosis in 2007 of mesothelioma.

The second would equip him with the physical and mental strength to fight back against this disease and to empower him to meet it head on in a bid to secure a long term future.

It was the cycling which alerted us to a problem - Keith’s "nifty fifty" (50 miles in 2 and ½ hours every Saturday) was taking longer and longer and he expressed anxiety about shortness of breath. Our first GP visit ended in dismissal "you’re the fittest man around - nothing wrong with your lungs". A different GP, at the same practice responded immediately, sensitively and appropriately. We found ourselves at the local chest clinic then at St James’s hospital for the biopsy and then at the moment of truth - Keith had mesothelioma.

Mesothelioma - what a complicated and difficult word to pronounce, very apt to name a condition likewise complicated and difficult to countenance. In the first days, I would sit at my desk or in the car, trying to pronounce it. What a thing to achieve, almost tied to a sense of denial - name the demon and maybe that’s too real to face.

Because of relatively early diagnosis and Keith’s fitness levels and strong mental attitude, he seemed a good candidate for the Leeds MARS trial, where radical surgery to remove a lung is combined with traditional cancer treatments of chemotherapy and medication.

The surgery is extremely risky as the operation is extensive and may cause long term damage to the heart, so the decision was enormous. After many initial tests and consultations, Keith was offered and accepted a place on the trial. Keith knew that he may be doing it "for posterity" but it also gave him real hope, some tools to fight the disease and a sense of actively engaging in an ambitious treatment path.

An enormous decision, but for him there was no option. The two of us had always been a good "team" and together we agreed on this way forward. We have both been "it is better to travel hopefully than to arrive" sort of folk. And so in June 2007 we both embarked upon the most important journey of our lives.

From the moment of diagnosis, we were never alone on this journey. Our lung specialist nurse from the local hospital gave us tremendous support with recommending ways to nurture Keith’s well being, helping with benefits (all the benefits agencies were responsive and helpful taking the financial pressure off one less worry), at urging us to consider initiating legal action with regards to the industrial neglect.

This last element was to prove a long and complex process, but thanks to the support and expertise of the specialist solicitor and allied experts, Keith received his compensation early 2008 and also a sense of justice for the harm caused to him.

Our journey also involved many new acquaintances, the consultant oncologist and his research nurse, whose very human responses helped us so much.  The consultant surgeon and his team who showed Keith compassion, commitment and respect.

The MARS trial pathway was very explicit with a strong regime of chemotherapy being completed to lay the foundations of surgery. Trial participants are randomized by computer 50% are selected for surgery and the rest are not.  This is the nature of a trial in order to compare the long term outcomes of different treatments. Because Keith was totally committed to surgery he was relieved to be randomised "in". By this time the illness and chemotherapy had taken their toll and Keith was anxious to begin his fight back.

In October 2007 Keith had his surgery and the surgical team were very satisfied with the outcome. It had been exactly the result they had hoped for. After two weeks in hospital Keith came home in extreme pain, with deep anxiety but also with high hopes. Hope was by far the prevalent emotion, lighting our lives with positivity.

We were well supported at home by our GP and the District Nurses who appreciated Keith’s sprit and by the McMillan nurse who was a young man to whom Keith related well. He was to become a true ally to us both but he and Keith often "conspired" against me! Their care, support and above all encouragement were key factors in Keith’s confidence and progress, physically and emotionally.

The following 3 months were deeply satisfying and full of hope, with Keith (myself to a lesser degree) doing the post-operative experiences and got out very day for a walk.  We started walking slowly round our street, progressed into town and then designed a circuit of 4 miles including up "the castle steps" and up "the bank" - both very steep but Keith relished the challenge.  Looking back this period of convalescence when we balanced plenty of rest with good exercise was so positive - we really felt we were "travelling hopefully".

In early 2008 it became clear that Keith’s progress was not continuing and further treatment by way of radiotherapy to target a secondary site was undertaken. The oncology team advised us that this complication was unexpected and it is extremely rare and that Keith had been very unlikely to get this.  He became less well and our daily walks and exercises were gentler. However, and this was important, Keith believed that his "journey" was continuing, that these were just complications which could be dealt with.

I understand that this would not be the right way for everyone but this continuing sense of optimism and faith in the future was important for us.

After a short stay in our local hospice to regulate his pain relief, Keith’s resolve to get home and back to his routines was as strong as ever. However, I was not becoming aware that his future was uncertain.

One Friday evening in March, Keith decided to plan for my 60th birthday, due in June 2008. He joked that a weekend in hilly Whitby would be good as he could use his wheelchair and I could push him up and down all those steep slopes!  He had his plans for the future and he talked about what to do this weekend, but a few hours later he died.  It was sudden and devastating but I believe that for him to be still "travelling hopefully" was absolutely right and for myself it gave me comfort.  His courage, strength and optimism will stay with me always.  He could have won his battle and he had helped "posterity" during our 15 month journey, I experienced a vast spectrum of emotions, from despair to elation, from fear to hope - especially hope.

At month 6 during Keith’s chemotherapy, I ceased work. My job in the care sector was demanding and the pressure to appear calm and confident both at home and work became too difficult. I am glad I had those months full time with Keith for many of them were so positive. My priorities have changed forever and in June at age 60 I retired for good - I never thought I would, but Keith’s experiences have made me determined to honour his memory and live my life on my own terms. I now work as a volunteer with a deep sense of contentment for two local charities. A year on and I now feel move able to "travel hopefully" and I know Keith would approve of that.

I am deeply aware that many people will be taking this journey and if my experiences can help them in any way I would be pleased to help, it would be a privilege.

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