Aboard Dignity (Lagoon 420) Blog

This is so hard to write. My wonderful Steve died this afternoon.

Everything happened so fast. The day after I wrote the last blog, Steve’s high temperature continued to worsen. He started becoming more confused and losing his coordination. Each day he dramatically worsen. Yesterday morning when I arrived at the hospital, Steve was barely conscious and Professor Linch was waiting to talk to me. He basically said that none of the treatment Steve was on was working and he felt it best to withdraw all treatment and make him as comfortable a possible. I knew then that Steve had lost his fight with lymphoma.

I reluctantly called our son Ben in New York who immediately booked a flight for himself, his fiancee Amy and his brother Sam (who had only just arrived in the States from Australia the previous day).

I spent the night with Steve who stayed comfortable and sleeping peacefully. I asked him many times to hang on as Ben and Sam were on their way to see him. The nurses were great, looking after him with care and always maintaining his dignity.

Ben, Amy and Sam arrived at the hospital soon after 10 am this morning and with their older brother John, were able to spend the last two hours with their Dad before he died. I am sure Steve hung on to have this time with his boys and me before he sailed away from this life.

We are all devastated.

Steve had a seizure/fit last Sunday at home. I called emergency and he was taken by ambulance to Stoke Mandeville our local A&E hospital. He stabilized quickly but was left confused and appeared to have no memory of recent events. Stoke Mandeville hospital kept him overnight and then transfer him back to University College Hospital in London once they had talked to Steve’s doctor there.

Since then Steve has no memory of the past year and vague memories of the previous year or so. He often thinks that what happen a couple of years ago happened yesterday. Neither can he retain short term memory. Everyday is a new day to him. We have to repeat where he is, why he’s in hospital, his time and treatment in Australia, our sale of Dignity, our return to England etc. every day. Often what we tell him in the morning is forgotten by the afternoon. After four days of repeating the same facts, I have written down the events of the last year so that Steve can read it over and over again.

Many checks have been performed to work out why Steve had his seizure and memory loss.
The results of the MRI showed no difference between the scan from before and after his seizure. This is good news as there are no noticeable damage to his brain and no sign that his lymphoma is increasing and causing the problem..

The neurologist did a whole load of tests. All physical reactions and reflexes were good. Steve was able to read fluently, respond articulately, name all pictures of objects and famous people shown and do numerical recalls extremely well. He has complete memory of his birth date, place of birth, our children’s birthdays, our anniversary date, all the things that he’s known for many years. He just does not have recent memories.

The neurologist is incline to think that the seizure and memory loss are caused by an infection. So specific test are being made for brain infections. We should get some results by Monday. Steve also had some EEG done on his brain mainly to check that he not having mini stroke. If Steve has a brain infection than the doctors are pretty confident that once treated, most of his memory will come back.

Steve is still very much himself although I think he is more cheerful, optimistic, mellower and funnier. He said it’s probably because he can’t remember his worries, although not remembering is a bit of a worry!

For me it’s been pretty distressing but I’m beginning to come to terms with this new complication. So for the moment I’m making the most this funnier and sweeter Steve while it lasts.

Everything is now geared for my return home late afternoon. The drug schedule is running another 30 mins early so we could be away by 5pm. We have had a vaste bag of drugs given to take at home and walked through their application. The staff here are all excited I’m going home and pleased I have done so well recovering from the round 1 complications. The more I hear from people the more I learn they felt the situation then was quite dire. I’ll be looking in the mirror for a return of Mr Yellow Man diligently.

Thursday I am back for at least a day visit. I am booked in to stay indefinitely again but could be sent home again that day. We’ll see on the day.

As a complete aside I ran into a good bio for Professor Linch. Tells us where he is professionally.

John’s here now visiting so I’ll say more later. From home I hope.