RICHARD'S BMT DIARY
Thursday, March 11, 2004
  Well i don't know where to begin, but i know all friends and family have received the news, but my gorgeous Richard died the morning of Sunday 22 February 2004.

Richard suffered from a heart attack, we have been told he would have been quick and he wouldn't have suffered.

Richards chest and throat got worse on Saturday and after lots of tests etc they treated it as anxiety and a general virus affecting the chest and throat. His chest xray and ECG came out fine. I was there from 10.30am till 7.30pm on the Saturday. He couldn't talk very well but they were doing their best to make him comfortable.

Unfortunatley he had had a couple of tumbles on the Wed/Thurs so he also had two black eyes. Also Richards mother was told she couldn't stay with him any more overnight as he was in a shared male ward.

I left Richard Saturdy night, with a loving smile and the positiveness that he could get through the night without one of us there, and that i or his sister will be there in the morning. I will never forget that we took ages saying goodbye and his face as i left.

I heart goes out to his loving parents, family and friends.

I have copied his fathers speech and my speech from Richards funeral, and Sarah (Richards boss and Friend) might be able to add hers to shortly. Thank you for reading this and if it has been of any help to anyone, i'm sure Richard will be feeling pleased that he started it.

Lots of Love SallySutton

Richard J. SUTTON 1967 to 2004.
Although the baby boy entered this world in Singapore, it was in another Far Eastern
place, Hong Kong, that Richard spent some of his young formative years. You may
well imagine the fascinating and lasting experiences this provided a young person. No
one needed a Theme Park when living in Hong Kong then. They were already in one!

He then came to Norfolk in 1976, by which time he was already an out-of-doors
person and, shall we say, leaning more towards becoming an athlete than an
academic. Already a strong swimmer, happiest with a football at his feet, and one to
enjoy a good walk.

His schools in Norfolk fostered his games-playing inclinations. Running, Squash,
Tennis, Soccer, Rugby and Hockey all flourished. He was to continue with most of
these, and others, for many years following his school days. He joined several clubs
and won many awards, as is now in evidence in the family home.

Richard's running included that of many Half-Marathons and some Full-Marathons.

His hill-walking found him on the top of the highest peaks of England, Scotland and
Wales in just one 24-hour period. Many such tasks were undertaken in recent years. Most were for charitable fund-raising. Ironically, leukaemia might already have been with him.

He always enjoyed cycling. The height of that pastime was the amazing feat of
cycling across the Sierra Nevada, along Europe's highest road, in Spain. The depth of
that cycling pastime was when he fell from his bike, earlier this year, having
temporarily forgotten just how weak his legs had become.

The determination and enduring powers necessary to achieve well in such pursuits
were to be applied throughout his last months, together with much enormous mental
strength, courage and bravery.

Richard did relax sometimes. Fishing formerly provided him with plenty of
relaxation. A guitar was normally at hand. Music gave him plenty of enjoyment,
especially that of the Beatles.

The entry of Sally, his wife, into Richard's life was the beginning of his happiest
years. There is no doubt about that.

During their courtship, Sally was clearly seen, at a certain lakeside, with a fishing-rod
in hand, receiving angling-lessons from Richard. Was this to be the start of a fishing
partnership? Did Sally bite, or take the bait? Answer? "No!" In fact, it may have gone
the other way. Somehow, Richard's fishing just discontinued.

However, he is to rest just outside this Parish Church, close to where the brilliant
Kingfisher birds have their homes. There is something very fitting about that.

Throughout his long and final ordeal, Richard remained very well aware of the great
support he was receiving, if only from a distance. It came from his family, friends,
relatives and, importantly, from colleagues at Norwich Union. He felt all of this
strongly. It is difficult to describe.

There is clearly great camaraderie within his former team or group at the Norwich
Union. He was a contributor to that throughout the good times, and derived from it during his tough time.

Those persons here today, and who contributed such support, know who they are.
Such strength acted towards nearly saving Richard's life. I am here trying to relay a
message of gratitude which he would have wished to have conveyed. Please also pass
it on to all others who may have given such kindness.

Richard also had the benefit of four lovely and loving ladies in his life.

His fun-loving wife, and very best friend, Sally, who commanded and provided him
with so much cheer, happiness, love and joy.

A close and caring relationship existed with his sister Joanne. It was Joanne who
shared herself with Richard for the vitally important Bone Marrow Transplant -
which we thought might be the save-all.

A wonderful and most devoted mother, Jo, who never ceased to provide great care,
compassion and concern. Jo was as a sunbeam to Richard from his beginning to his
end. Richard, in his own manner, repaid as he could. A true mother/son love affair.

The fourth lovely lady is the little-charmer - the delightful daughter of Richard and
Sally, Ellie. Her arrival in this world provided Richard with, and I quote his words,
"the most wonderful experience of my life".

It was for all persons mentioned, and others, including the young son, Jude, that
Richard maintained incredible courage and determination in his effort to win a
massive battle. He had much to live for. To die was never a considered option.

The ordeal lasted for seven very long months. From July until his eventual release
from pain ten days ago. His body could then take no more. He remained mentally
very well aware. During that long time, he was released from hospital, amongst some
euphoria and much optimism, 11 times. Sadly, it also became necessary for him to be
re-admitted 11 times.

Richard so often expressed his apology for the troubles HE was causing OTHERS.
Those who knew him well will immediately recognise how aptly such a remark
reflects his personality and nature.

Thus it is, that Richard has left us. His passing on has caused much sadness. Such
sadness will remain forever with several persons here present.

Ipswich Town FC has lost an ardent supporter.

To live in the hearts of those we leave behind is not to die. Thank you.


This is my speech for Richard:

Richard Sutton, Rich, Gorgeous, scrummy man but my favourite was always ‘you’re my favourite hubby…..’ it would always make him smile. Well I’ve completely embarrassed Richard now!!

I knew him for such a small amount of time compared to many of you. I have learnt though from all the many cards and letters, myself and the children have received that no matter the amount of time people knew Richard, you all saw him the same way, as one of the most genuine guys you could ever hope to meet.

When we first met, some of you may remember this, I was put with him to listen to his calls, at the call centre, as part of my training. Well I can safely say no calls were taken!!! He showed me enthusiastically how the systems and phones worked and then lost the call he was transferring, due to my talking he said!! I must admit I was talking endlessly due to nerves, and then we got onto the topic of a parachute jump! Well that was it no calls were taken, which didn’t go down well!!

The best thing though was I met Richard, we emailed from there and that was it an NU romance in the bag! That was one thing Rich and I loved to do was reminisce of how we met and stories of the children growing up. It never failed to put a smile on our faces.

You just had to look into Richards face to see how proud he was of his life and his family around him. Words never seemed enough, so we would have competitions telling each other ‘ I love you more than you can imagine’, the reply would be ‘I love you more than that‘, and he would go, ‘well how do you know that, as you can’t imagine how much I love you!! A ‘Sutton’ sense of humour we used to call it! His favourite was, when you were watching a film, he would go…..’is it going the way you want it to go….? You’d turn and there would be a broad cheeky grin across his face. Ah that’s where the children have got it from.

Ellie and Jude, goodness how he loves them. He was proud watching Ellie settle into school and be the winner of Team Points in her year. Jude growing in character every day, whilst both of them having Richards kind and caring temperaments. Gosh that has to be something to be proud of.

I, his wife, well words can’t describe my loss. He was my husband, best friend, Daddy to our children, he was and will always be my soul mate. We were a team. I’m so proud that he chose me to be his wife. I inherited a loving family who thought the world of their Richard, and they will remain to be very much a part of my family. He will also be greatly missed throughout my immediate family.

One thing that I may ask of you all that you remember my husband , not as someone who lost a battle, but someone who went through life as a Winner. Richard strove to do his best at everything , he loved his football and music, he won so many medals and trophies for football, hockey and running. He loved and was content with his life with the children and I. He was and will remain to be, my Hero.

This is the speech from Richard's friends at Norwich Union:

Sally has asked me to say a few words about Richard on behalf of his colleagues and friends.

We first met Richard 5 years ago when he joined our team.
He was an instantly likeable guy, genuine, helpful, kind and uncomplicated. Funny, popular, a real team player.

Richard was an all-round sportsman, the star player of our annual Norwich Union 7-a-side football team, where he also brought along his family as the team's cheerleaders.
As you know, Richard was also a dedicated Ipswich Town supporter, much to the frustration of the Norwich City fans in the team.
You could always guarantee lots of football banter the days before and after a local derby.

Richard was always one of the first to volunteer to take part in charity events. We remember his impressive run in the London Marathon and also in June 2000, leading the team home in the 3 peaks challenge where despite being soaked through he was the only person who managed to sleep on the mini-bus.

Richard was a joy to work with, he was always prepared to help people out, he was polite, cheerful and well respected by everyone he came into contact with.

But without a doubt our over-riding memories of Richard will be as a devoted family man, a proud husband and father and a loving brother and son.
Throughout his illness, the support and love he received from his family was second to none.

Richard was one of the most genuine people we've ever met. He never had a bad word to say about anyone and was always interested in what other people had to say.
He was always smiling and remained positive even during his illness, never complaining, extremely brave, an inspiration to us all.

Richard was more than a colleague, he was a friend.
We're glad our paths through life crossed and his memory will stay with us all forever.


Quotes from sympathy cards recieved:

Please find below excerpts from cards and letters myself and the children have received:



I began to get to know the real Richard. He was a lovely kind guy and very clever. Richard’s own achievements with FPC 1,2 and 3 motivated me to do the same.

Take joy in the fact that those two beautiful children will forever be a little piece of him for you to hold onto.

You have Ellie and Jude who are an unforgettable memory of Richard. Just because he’s not there don’t stop talking to him, as someone said ‘I’m just in the next room’.

Richard was simply one of the nicest people I have ever met, and I don’t often say that about someone!

Richard was the nicest , kindest and most laid back person I have ever had the pleasure of knowing!

As you know, Richard was the nicest , most genuine person you could ever hope to meet and will always be remembered.

Richard was a lovely man and a great friend, a great pleasure to work alongside. He will be missed but not forgotten . As a fellow Ipswich supporter I will always think of Rich when I look for Town’s results and give a cheer for him!

Richard was one of the nicest blokes we had ever met, and to have you both as our friends meant a great deal.

My fond memories of numerous escapades with Richard will always be with me and now treasured even more.

He was without doubt the nicest man I have ever met, and I will miss him deeply. I am honoured that he called me his friend.

Richard was a true gentleman.

He was a lovely man and you both were a great team.

He was a lovely man and you were so happy.

He was a find and genuine person, who I had a lot of respect for.

It was a real pleasure to have known and worked with him.

Richard was a good friend to me over the years. It goes without saying I will miss him a great deal!!!

…..and when I saw you both in the summer I was struck by the affection between you…..

We have always had great affection for Richard and have happy memories of holidays he spent with us in the Sicily Isles………he enjoyed the sea and the freedom the islands gave …….throughout the ordeal of Richards treatment we marvelled at the courage of Richard………

Sally, Richard was special to us too. He had a special place in my affections, because we both loved sport………Richard was a fine lad. A great credit to his Mum & Dad. We’re going to miss him and will never forget him.

Richard was such a lovely person, and its an old fashioned word but he was probably the most decent person I’ve known. It was recognising some of Richards qualities in my partner, and seeing your happiness as a family that let me know that it might be possible for me. We’ll all be wishing we spent more time with him. I’ve thought for a while you two were the bravest people I know.

I only hope you can take comfort from the fact that Richard was one of the nicest people I’ve ever met. He was always friendly and always willing to help when help was needed. You should take strength and pride that he chose to spend his life with you.
Richard has left us with good memories and although he is no longer with us physically he lives on in those memories.

….but his face truly lit up as he described that he has less time for sport as he had recently had a baby daughter, Ellie. Richard was one of life’s true gentlemen. Richard was a joy to work with, he was always prepared to help people out, he was polite, cheerful and well respected by everyone he came into contact with. He was always so positive, content and genuinely happy with his life.

I’ll never forget his smile and his ability to eat everyone under the table……Richard was such a calm person, easy going and a great listener, but he also had a ‘cheeky’ side to his nature. It was a real privilege to have known Richard, as an employee but more importantly as a friend. He was so proud of you, Ellie and little Jude, so grateful to his sister Joanne and so close to his parents. I’ve no doubt that he is watching over you all now.

I only knew Richard for three and a half years, but I can genuinely say that in more than 20 years with Norwich Union, I have rarely met anyone as committed, enthusiastic and hard working. It was a pleasure to work with him…..I never heard him grumble…..He was a gentle man in every sense, so proud of his family and with very traditional and decent values that were a great credit to you and his parents.

I hope it may be some comfort to you that Richard was so highly thought of. If you’ll allow me to borrow one of your phrases from the Blogspot website, Richard was a hero to a lot of us as well. We won’t forget him.




Thank you for all of your support and kind thoughts

Sally, Ellie and Jude





 
Thursday, February 19, 2004
  Thurs 19 Feb

I'm afraid alot has happened in the last week. Richard was admitted to N & N hospital on Friday 13th! He started to feel worse int he afternoon and had collapsed in the kitchen due to his knees becoming so week. Unfortunately because he has felt rough since being released from hospital, he has found it difficult to exercise.

N & N have had him and have ran tests until Tuesday this week. They have been in contact with Addenbrookes along the way and felt he needed to go back to them for further tests. N&N do not specialise in Bone Marrow transplants such as Richards. Richard has been ok in the hospital as the team there were very helpful. He is currently a diabetic, this is drug indused and therefore can go back to normal later on.

We are all staying with him 24/7 at the hospital to keep him company and positive, as its terribly lonely otherwise. Richards mum has been and remains to be amazing and has stayed with her son all last week. I took over Tuesday midday. Richard had a bad afternoon as he was in alot of pain, but after taking some co-dydromol which made him more comfortable and now the pain hasn't returned! I went with Richard Tuesday night by Ambulance to Addnebrookes.

Addnebrrokes haven't had a bed until now so they took Richard as sson as the bed became available.

We arrived early morning and Richard is now in Ward C10. Again he mum is taking care of him which he is so grateful of. The doctors have the full facts and are looking at furhter reasons for Richard fatigue.

Apart from this Richards GVHD continues to have stayed away. His liver hasn't been good, so thankfully they have finally taken him off the cyclosporin and replaced it witrh a less liver distructive one.

Richard has said he is comfortable but bed bound as he no longer has the muscles to support himself. He is going to have regular meetings with the physio.

 
Thursday, February 12, 2004
  Thurs 12th Feb

Richard still isn't feeling too good, he has had a visit to N & N and has been checked by a new consultant there who sent him for a chest x-ray and for physiotherapy, as his legs have lost all the muscle to help him get up from a chair and climb the stairs. He is still extremley tired. The chest x-ray was clear.

We are hoping to get the remainder results from Addenbrookes hopefully saying what Richard has got and then treat him with the necessary drugs. Unfortunately Richard has more medicines to take, but they are still happy with his progress as the GVHD has reduced, and the steriods have been reduced again. These are the drugs that are taking the muscle away from Richard.

No more appointments until next when his platlets will be checked as they are low again, so hopefully no platlet transfusion.
He will be having lots for rest in the next few days so hopefully he'll feel better soon. He weighed in at 62kg and has also experienced sickness, which we will soon see if its due to the new drugs, combination of the drugs or reduction/increase in drugs.

He is amazing and my hero. 
Saturday, February 07, 2004
  Fri 7th Feb

regular consultancy at addenbrookes.

as spent past week at addenbrookes not many changes made and told no more results have come back yet. however counts reasonable fine and weight fine 65kg.  
  Wed 28th - Tues 3rd Feb

Unfortunately after feeling rough for about 4 days spent almost a week at addenbrookes. as usual lots of various tests to establish what is wrong but nothing found (so far) so the decision made to try and get better at home where there is a lot of feel good factor.

its the same old story though really where immunity levels are so low that im so open to everything and this is what has happened but not everything can always be found that easily. 
Saturday, January 24, 2004
  Wed 21st Jan (bmt + 178 days) - n & n

This visit turned out to be more of a routine check up rather than an informative meeting with the usual consultant.

Most blood counts were slightly down with the platelets dropping the most to around 48 !!

This i'm hoping is due to me very stupidly coming off my bike the day before leaving me with a black eye, battered and bruised and generally more work for the platelets to do.

Weight has remained about stable on the Norwich scales at around 66kg.

The last week has not been too brilliant with the aches and pains of the bike incident which seem to have left me tired with the body trying to recover from it.

However the early signs of the addenbrookes drugs re-arrangement seem good.

 
Monday, January 19, 2004
  Fri 16th Jan (BMT + 171 days)

Drove down to Addenbrookes with Sal who hadnt been for a visit for a while and wanted to catch up with things including hearing from the 'horse's mouth' that i could do lots of exercise as she cant believe some of things i'd been doing.

Anyway as ever the main topic of conversation was GVHD.

The consultant i saw suggested that this may just be localised i.e.confined to the hands, feet, mouth and face.

Because of terrible bowel problems ive been experiencing it has always been assumed that the GVHD has spread more internally however there has never been great proof of this.

However this could conceivably be something to do with after effects of Radiotherapy/Chemotherapy, an ongoing virus/bug, reaction to all the drugs i have to take or an infection from the peg tube feed that still comes out of tummy.

So the consultant has decided to change the arrangement of drugs with a review in 2 weeks time.

The PCR test results has come back. PCR stands for Philadelphia Chromosome and is the characteristic of the Leukaemic cell. The test is a very close inspection of the blood and more precise than the recent bone marrow biopsy that i had. The result was good news the consultant announcing that i was 'all female' (after the donor) so Sally has been calling me all sorts of girls names since !!

My weight has gone up 1 kilo to 65kg and counts acceptible HB 13.0, WB 5.5, Platelets 63 (slightly down from previous but this could be due to a cold i'd been having which can be a strain on the Bone Marrow / Stem Cells to produce).

Thats it for now, next stop n & n next Wed and yep the consultant confirmed all the exercise i'd been doing was good. 
Thursday, January 08, 2004
  Wed 7th Jan (BMT + 162 days)

This was my first post bmt consultancy at Norfolk and Norwich. The idea being that eventually because of distance n&n will slowly take over and the Addenbrookes visits will become less frequent.

I'm pleased with this and that i will still have good contact with the Addenbrookes consultant who i rate highly and have built a good relationship with.

I wasnt quite sure how much n&n new about donor bmt transplants as i new that they didnt perform the actual transplant itself but as it turned out the consultant i saw has had vast experience of bmts from previous hospitals and also looks after and sees people such as myself who have had bmts from far away hospitals who actually live in the norwich area.

Once again counts all very good - White Blood Cell 6.4 (normal range 4.00 - 11.00), Haemaglobin/Red Blood Cell 13.2 (Normal range for Males is 13.00 - 18.00), Neutrophils 4.6 (not sure normal range but i believe Netrophils are always someting like 70% to 80% the levels of White cells), Platelets 68 (normal range 150-400) - Platelets are low but this is something that goes hand in hand with GVHD and in a way its possible to monitor GVHD levels by this although i gather this is not a totally precise arrangement and something they would not look too closely at. Lymphocytes are at 0.8, not sure how high/low this is or what the normal range is but now i'm more clearer about their involvement i will be monitoring this more closely.

Otherwise weight is higher on the Norwich scales and it was generally interesting to hear a another stance on the whole subject matter from a different consultant.

Apart from looking like a puffed up bright tomato i'm feeling much stronger at the moment, eating well and exercising well and generally being able to do lots of things i wasnt able to do a few months ago.

Next stop Addenbrookes Fri week.  
  Fri 2nd Jan(BMT + 157 days)

Quite a good appointemnt at Addenbrookes in that both myself and the consultant agreed that there had been a slight improvement in the GVHD levels.

After a long chat with the consultant i learned a little bit more about the causes of GVHD which i will attempt to explain below

It is a reaction between the donor's new cells and my existing system i.e. they dont recognise and like each other very much at first and need slow and careful introduction.

In particular it is the Lymphocytes that are produced by the new cells whose normal job is to fight off anything foreign such as Bacteria, fungal infections and viruses who dont recognise your existing system as being of its kind and wants to fight that off as well.

There is normally more GVHD problems where the donor is female especially one who has had children as there is more of a mixture in their blood i.e parts of their partners/childrens as well so in other words not quite as ideal a match as say 2 identical twin brothers.

Thats the downside of GVHD, the upside is that the Lymphocytes also dont recognise and like bad Leukaemic cells that have been left around after Chemo/Radiotherapy being extremely foreign to them and try to destroy them as well.

So its quite often a case of if GVHD can be controlled long term results can be good. However to combat this in the short term the Lymphocyte production i.e. immune system is suppressed for possibly as long as 2-4 yrs leaving you open to picking lots of things up even though you are prescribed drugs to stop this happening.

Elsewhere my normal blood counts are good. Weight slightly down which didnt surprise me too much as i practically starved myself over new year to sort out a dodgy tummy problem i was getting - the consultant was cautious of this as it could be related to gvhd so instructed me to provide n & n with a stool sample.

I also discussed with the consultant going to shops, cinemas, restaurants, supermarkets and he explained not really a good idea - the bottom line being that anywhere busy/crowded gives me more of a chance of catching anything.

Next consultancy stop is n& n on 7/1/04. 
THIS IS MY BMT DIARY WHICH I HAVE SET UP PARTLY SO THAT FRIENDS AND FAMILY CAN KEEP IN TOUCH WITH HOW IM GETTING ON AND PARTLY SO SO I CAN KEEP MY MIND ACTIVE DURING MY STAY IN HOSPITAL. NOT SURE IF I WILL BE ABLE TO SET THE LAPTOP UP WHILST IN HOSPITAL, IF NOT SALLY MY WIFE WILL KEEP THE UPDATES GOING.

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