Jane & Howard's Diary

Notes from a lonely place …

It is February 2009 and I am picking up where Howard last left his diary in March 2008.  Those of you who know us will know that Howard died on the 28th August 2008. His last five months were full of enormous highs and great lows.  His health had started to falter in January 08 and continued to do so throughout the year.
Every time he pulled through one medical hiccup he would have to face another. In hindsight he was obviously dying but we managed to convince ourselves that it was just bad luck that things kept going wrong.

With customary courage and understatement Howard squared up to each challenge and summoned the strength to move forward and fit as much into his life as he could.  A trip with friends to Majorca was planned so that he could get some sun and start training. The wonderful events that were planned through the year gave him such strength and the will to carry on.  Three days before the Ridgeway walk in April he was unable to walk a few yards but when the morning of the first day dawned he was up and dressed by 6am and ready for the challenge, taking those who had seen him only days before by surprise.

The Ridgeway Walk was a success on so many fronts.  As a fund raiser it achieved so much more than we had hoped; as an exercise in pulling together people from disparate backgrounds it was unique and for Howard it gave him such joy and a sense of enormous pride that everyone involved in the walk was behind him (not literally).

Our next highlight was the Howard’s Way Walk Dinner – 30th May.  Between the walk and the dinner Howard had tried to restart chemo as his March scan had showed some signs that the cancer had spread to his liver and the tumours on his lungs had increased by 25% - this was not good news.  After his first infusion he became unwell and terribly sick, completely unable to keep food or liquid in his system.  It turned out not to be related to the chemo but that he was suffering from a blocked duodenum.  This meant two weeks of not eating or drinking resulting in a dramatic weight loss, loss of strength and a lengthy stay in hospital for a correct diagnosis and the insertion of yet more stents. He felt he was becoming rather like the Million Dollar Man – made up from metal tubes!

On the night of the dinner we packed him up with pain killing patches and rested him all day so that he would have the strength to last the evening.  He made a moving and memorable speech and stayed on his feet until 5am chatting and socialising – it was such an amazing feat and the evening an amazing success.  The generosity of those who attended and those donated auction gifts once again took our breath away.
It is so true that adversity brings out the very best in people.

On a perfect English Summer’s day in June our local friends organised a Charity Cricket Match at one of the most beautiful cricket grounds in England – it was a day full of warmth, laughter and a little light competition!  At that time Howard was feeling very weak again and spent most of the day lying on a blanket listening to the chat – we had not realised that his ulcer had started to bleed again resulting in yet another transfusion a couple of days later. At the end of June he managed to attend the Henley Regatta and in early July the Henley Festival.

July also brought the news that we had definitely made our fund raising target of £75,000 with money still trickling in. Howard had been reading a great deal about the Byzantine period and mosaics so we decided to go to Italy, initially to stay with a friend in Umbria, and then at the end of our trip to visit Ravenna to see the fantastic Byzantine Mosaics. For Howard it was the Holy Grail and a trip that turned out to be one of the most special of his life.  He, Octavia and I had such peaceful and happy times together – Howard appeared to rest and gather strength – we thought perhaps he was turning a corner.

On our return to the UK at the beginning of August Howard seemed to slump, spending most of his days either in bed or lying on the sofa.  We managed to attend a friends birthday dinner, and a couple of parties but Howard was definitely very tired. By Friday 22nd August we were seeking pain relief from the Sue Ryder Home.  When they saw Howard they were very concerned for him – asking that he stay in overnight for them to make him more comfortable. Although I was concerned I didn’t realise the extent of their concerns.

Howard did not want to stay – he wanted to come home but we talked it through as best we could and decided that I would take him home on the Saturday and bring him in daily to have his morphine changed. Over the weekend Howard weakened and weakened but we managed to get him up and down the stairs with the help of Octavia, Rebecca, Harriet and Daphne who had come down to stay.

Our final trip to Sue Ryder was on the Tuesday morning.  On arrival they got him into bed and, after checking him, quickly took me to one side to say that they thought he was dying.  It was the most terrible shock as I had truly believed that something would happen to turn things round.  Calls went out to those who were important to him and friends and family started to arrive to say their farewells.  At this stage Howard could hear but could not speak.

The Sue Ryder Home had allocated Howard a lovely room with views of the garden and were completely relaxed about the large numbers of people who were gathering – it was a wonderful and amazing thing that everyone was able to say their goodbyes – rather surreal but comforting.

On our last night at his bedside Howard’s best man, Andy, brought a bottle of port that he had been saving to drink with him and we all toasted Howard, putting a little drop on his lips to taste.  At the end of the evening Andy, a doctor, told me that Howard was having to work very hard to breath and that I should tell him it was OK to stop fighting.

Everyone gradually left leaving Octavia, Harriet, Nick, Fiona and myself at his bedside. We lowered the lights and put on his favourite music, and Octavia and I kissed him and stroked him and whispered that it was time for him to let go and that we would be OK.  I knew he did not want to leave us as we had often talked late at night when we couldn’t sleep and what bothered him most of all was leaving Octavia and I alone.

He drifted on, his breathing getting shallower and shallower – you could see him relaxing and in the end at 00:45 he breathed out gently and that was it – he had gone.  It was so peaceful and the relief that he was no longer in pain was evident in all our faces and it was wonderful that his end was calm and without struggle.
We knew our lives would never be the same and that he was leaving such a gaping void.

When first diagnosed Howard and I had talked about funerals and how we both wanted to be sent off.  In typical fashion Howard wanted the last laugh and requested that his coffin follow a Mr. Whippy Ice cream van, that his pall bearers wear clown shoes, that tartan was worn by them as well and that we had a close-magician.  I ticked all of the boxes but one – the clown shoes had to go as the stress levels would be stratospheric should anyone trip!

To the very end he did it his way!