RICHARD'S BMT DIARY

2004-03-11T05:19:00.000-08:00

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

2004-02-19T01:34:00.000-08:00

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.

2004-02-12T04:19:00.000-08:00

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.

2004-02-07T04:35:00.000-08:00

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.

2004-02-07T04:19:00.000-08:00

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.

2004-01-24T08:02:00.000-08:00

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.

2004-01-19T01:16:00.000-08:00

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.

2004-01-08T12:39:00.000-08:00

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.

2004-01-08T07:09:00.000-08:00

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.

2003-12-22T04:57:00.000-08:00

Fri 19th Dec (BMT + 143 DAYS)

No improvement in GVHD from last weeks appointment so conultant has decided to up the steroids and because this will reduce my immune system even further has prescribed some Pennnicilan.

Weight not changed from last week which is a bit of a dissapointment considering i have been eating like a horse despite having low appetite levels and a sore mouth. Hopefully Christmas should sort this out especially as Margaret (Sally's mum) keeps talking about Christmas pudding !!

Other than the GVHD feeling well within myself although exercising extreme caution due to low immune levels etc.

2003-12-13T08:33:00.000-08:00

Fri 12th Dec (BMT + 136 DAYS)

Regular consultancy appointment at Addenbrookes.

Good news that the results of the recent biopsy on the gut revealed no evidence of GVHD. However GVHD is showing on the face, in the mouth, hands, feet and general flakiness of the skin.

This hasnt seemed to have got much worse over the last 2 months but the consultant would like this reduced before we can move on - he has therefore upped the Cyclosporin (an immuno-suppresant drug) to 200mg a day.

Elsewhere counts are acceptable. Weight 64.7kg and the dietician has given a few tips to get this up.

Because of the way Christmas has fallen this year and that they would like to monitor the GVHD closely my next appointment will be next Friday.

Generally feeling a lot better and now that i feel a little stronger will resume a bit of an exercise regime. The consultant recommended walking an extra 100 yds each day so you never know London marathon in 2004 !!

2003-12-13T06:49:00.000-08:00

Tues Dec 9th (bmt + 133 days)

Had a blood test at Norfolk and Norwich hospital and blood counts all very acceptable.

Not too sure why this needed to be done. I think its something to do with the N & N slowly taking over my case but i'm not entirely sure this will ever happen properly as Cambridge are more specialised in this field.

Anyway the N & N hospital is much nicer and Jude enjoyed the toys and play area !!

Generally starting to feel a lot better and stronger however still very cautious so am having plenty of rest and not over doing anything.

2003-12-06T07:14:00.000-08:00

Fri Nov 28th to Fri Dec 5th (BMT + 122 to 129 days)

Unfortunately a weeks long stay at Addenbrookes with a brief night at home on the Sat night when i thought i was better but i wasnt.

Basically i tend to feel rough all the time but every so often it seems to come to a head where i have no alternative but to go in. This time it was decided to have an extended stay in hospital so as to really get to the bottom of things and really thrash things out with the doctors.

When i went in i believed the problem was that either the Flu had resurfaced badly and or that the GVHD was getting out of hand internally.

They performed all the usual tests for Flu but nothing was showing up for this although they advised this was not to say i definitely did not have it.

With regard to the GVHD they performed a biopsy on my Gut. The camera revealed no abnormalities, the results of the sample tissue will not be available for a week or so. However doctor's agree that i have got bad chronic GVHD and have extended the drugs to deal with this.

Chronic GVHD is normally post 100 days and is harder to deal with than Acute GVHD which occurs pre 100 days. They always seem confident that they can deal with the Chronic GVHD, what they tend to do is up the immuno-suppresant drugs i.e.hold back the introduction of Joannes new cells. This is at the expense of producing Lymphocyte cells which fights off viruses, bacteria and fungal therefore my immune system is/will be low.

Whilst i was in they gave me one bag of platelets and four bags of red blood cells due to low counts probably as a result of the increased imuno-suppresant drugs.

They also found a bug in my stools and have prescribed anti-biotics to deal with this. i was rather pleased with this as all foods are going straight through and i would rather it be a bug problem than a GVHD problem although it could still be a GVHD one.

Anyway i went home not feeling too much better but reassured by the fact that one or two things had been ironed out and invesigated. i also gained a few new tablets to take and i'm estimating on an average day i take around 18 tablets in the day - who says i sit around reading books all day !!

Whilst i was in i met Lady Archer. Basically as an Addenbrookes Governor she was being shown round the ward and then she decided to speak to me as a typical example of a patient !!!

One final thing - it has recently come to my attention that some of you were not made aware when i changed my e-mail address. My e-mail address is richardsutton@ntlworld.com - any e-mails will gratefully be received.

2003-11-22T08:56:00.000-08:00

Fri 21st Nov (BMT + 115 days)

The regular consultancy visit to Addenbrookes went well.

The results of the recent BMT biopsy revealed that there is no sign of the return of the CML. Whilst there is still a long way to go, after 4 months this is a great piece of news and made us feel extremely happy - later Sally celebrated with a glass of Sherry, me with a glass of squash which is about as strong as i can manage at the moment !!

They also advised that tests made during my recent stay revealed that i had Flu. This was interesting as i was a bit worried at the time they hadnt really got to the bottom of what id got and it was nice to know what it was. It was also reassuring that my new immune system albeit with the help of some drugs was able to deal with this before me having the Flu job which im due to have soon as part of the post Transplant process.

My counts are within normal limits although at the lower end and my weight has dropped to 64kg. The weight is important as the more you put on the more nourishment there is for the growth of new Stem cells and therefore the increase of blood counts etc.

The Dr advised my GVHD is probably more than they would like but the fact that they are reducing the level of drugs used to get rid of this implies to me we are going in the right direction.

2003-11-22T08:30:00.000-08:00

Tues 11th to Wed 19th Nov

On returning home from hospital i discovered Sally cold had not improved. After a day or so of avoiding each other which is not the sort of thing you want to do with your wife i decided a stay at Mum and Dad's was required.

This was originally only intended to be for a couple of days but our colds never improved that quickly and it turned out to much longer. In the end i went home feeling not much better with the view that family life is just as important and that you just have to get on.

On a lighter note my hair is starting to grow back nicely and am starting to lose the very cool Michael Stipe look although the Sutty receding hailine is still evident.

2003-11-11T04:43:00.000-08:00

Fri 7th Nov (BMT + 101 DAYS)

Unfortunately it was not the Fri i thought it was going to be i.e.Consultancy meeting followed by BMB biopsy. Instead following a steadily worsening cold during the week i ended up with a temperature of 40 c and spent 4 days and 3 nights at Addenbrookes.

As per usual with temperatures they immediately managed to get things under control and performed lots of tests to see if there was any underlying promlems such as infections etc which all came back negative.

The conclusion on leaving was really that it was probably a cold that had got out of control and with my lower than normal immune system there was not much by body could do about it without help.

Just before leaving they performed the BMB biopsy procedure, not nice but nice to have it over.

At this point lots of praise needs to be given to Sarah and the team (my team at work) who on Fri had a fundraising day proceeds of which are to go to the Oncology dept at Addenbrookes. At the time of writing they have raised around Â£2500 through various activities - well done guys, what a tremendous effort and Al i hope the legs are better now !!

2003-10-29T12:05:00.000-08:00

Fri 24 October 2003 (BMT + 87 days)

Todays consultancy trip to Addenbrookes went well mainly as the main point of discussion was going to be the GVHD i had been experiencing which has now settled down a bit.

The bloods are all within limits (neutopils 1.3) and my weight has now increased to 66 kg having been as low as 62 kg at one stage.

Elsewhere feeling physically stronger by the day and able to do more and more however feel a bit rough round the edges
with a cold fortunately not accompanied with any high temperatures. i have been told that the Steroids i am taking for the GVHD to a certain extent mask any temperatures but that they can usually spot any underlying problems through blood tests, so far they havent.

Next appointment will be 2 weeks time at which time they will carry out some disease staging through blood tests and a Bone Marrow Biopsy. I have had 2 BMBs before early on in diagnosis and its probably the most painful one off procedures i have had during the treatment so the day should be fun !!

2003-10-16T09:15:00.000-07:00

Thurs 16 October (BMT + 80 days)

Just another 20 days to the big + 100 days if my calculation of the + 80 days is correct.

Anyway have now been out of hospital for around 3 weeks, my bigest spell by a mile!!

Have been back at home home for about 10 days after first being at mum and dads for a short while - a big thanks to them for their immense support.

My last spell in hospital was to deal with some GVHD which is showing as a rash on my hands and making the feet painful. Despite increased medication this has still not gone however the doctors reassure that it is fairly common and feel confident that it will go. Progress is slow though and the way things are going Fri weeks appointment could be interesting.

Apart from this im feeling a bit rough round the edges which im putting down to the rigours of the transplant, medication side effects etc

There are a lot of positives though im physicaly feeling stronger by the day, im eating like a horse and generally recovering from the transplant reasonably well.

2003-10-07T02:11:00.000-07:00

Friday 3rd October

Richard picked up El'sfor me from school as i spent the afternoon in casualty. Thought i had broken my nose, when i was clearing the garage out and something feel on me!!! Ouch!!! Ha Ha.

Anyway met Richard afterwards and everyday is better. His appetitie is nearly back to normal. So haopefully he'll pile the weight on.

Went to the Dry Ski slopes open day on Sunday and spent 4/5 hours out. Walked there and then sat and watched the displays etc. Excellent day and Richard felt fine with it all. We didn't realise how long we had been, so thats got to be good. He has been having some lovely long walks with his parents as well.

Monday 7th October

Hes back!!!!!! Yep my hubby is back, so being that he is here i'll hand you over to him..............soon!

RIchard is back on his ntlworld email if you would like to email.

2003-10-01T09:12:00.000-07:00

Sunday 27th Sept

Saw RIchard at Addenbrookes and he was feeling alot better the new drugs had made him feel less cold, and his feet and hands weren't so sore.

Due to the GVH affecting Richards skin the skin is now being repaired by the intrevenos steriod. Apparently the shedding of his skin could be alot to do with why Richard has been so much colder than norm. Also Richard has alot of fat and muscle to build to keep him insulated.

Monday went well in that Richard was told he could go home on the Tuesday when his course of treatment ended. They would confirm this in the morning.

Richard was discharged from hospital on Tuesday but didn't leave until late afternoon, as all the drugs etc have to be ordered etc. Richard returned to his parents and is doing well.

Wed 1st October Richard sounded well and was just resting, he is very tired and the car journeys seem to tire him alot. Thankfully the doctors say he dosen't have to go to clinic in Addenbrookes on Friday.

Richard walked down to pick El's up from school on his own and seem tired but happy. We are hoping that if all progresses well, Richard will retun home to me and the kids on Monday.

Generally the treatment has done the trick and hope that this leads to a quicker recovery as Richard is already regaining an appetite.

Again i will up date in the next 3/4 days if there is any news.

2003-09-27T01:09:00.000-07:00

Friday 25th

Richard went to Addenbrookes for his weekly appointment. They decided to keep him in due to the extent of his graft v host desease.

As i have said his feet and hands have got really sore and his feet felt bruised when walking. The nurses gave him a choice of going into Addenbrookes daily but Richard hasn't the strength to do this. He is staying on ward C10 where he receives one dose of steriods a day. The steriod cream stopped working and Richard said it made it sorer rather than better.

They will give him the steriods intreveniously for up tp 3 to 5 days depending on the reaction.

Richard is in good spirits happy that it is all being treated and looking forward to feeling beter as this really is the only thing holding him back. GVH can be serious but Richards systoms have got worse but not as bad as they could with the condition. Plus the doctors were always on the brink of giving him the steriods intreveniously, but with his past kidney probs they decided not to.

His mother will visit today and i will Sunday. I will up date this Monday / Tuesday next week when the ward rounds resume and the consultants pop in Monday afternoon.

2003-09-25T02:12:00.000-07:00

Sunday 20th saw Richard with the kids. Richard has relaxed and settled in. Apparently being tired alot is normal when returning home. Als as Richard has lost some weight, mainly muscle he is cold quite alot. Also saw Richard on Mondya. It was good for Richard to see Jude as Jude couldn't see Richard incase he had chickenpox. Unluckily Jude didn't get it!!

Richard walked down to the school on Monday and Tuesday to pick Ellie up and saw El's eacher. Proud father and all that. He managed it really well.

Picked the kids up and Richard was complaining of being cold, but also that his feet hurt.The soles of his feet felt bruised. Also his rash on his hands and feet was raised. he will mention it on Friday when he sees the consultant for his weekly appointment in Addenbrookes.

Unless there is news from Friday i will up date you all at the weekly. All good, richard is resting lots but also exercises as well. Oh and his beard has grown back so he has to shave regularly again, the hair on top should follow shortly. Good timing as it should keep him warm for winter!!

2003-09-20T01:25:00.000-07:00

MOnday 14th September, Richard was keen to see the doctors but also the consultants whose rounds were today. Obviously hoping he would get the ok to go home. Richards ichy skin got worse in the evening of Sunday, and then subsided nough for him to sleep. After changing JJ's he flt better. So was told it could be the washing powder his Mum is using. His skin is obviously alot more sensitive as its had a rash for a while due to the antibiotics and also he skin wash he has used cleans the skin a little to well!!!

Tuesday 15th September, Richard was told that he can go and was discharged in the morning. He appaently left about 3 pm with all of his drugs and things and arrived home tired.

Wednesday 16th Sept spoke to Richard finally. He seemd exhausted but happy to be out of the hospital.

The rash is alot more confortable. Went round to see Richard after school with El's. He was in the lounge looking relaxed and comfortable but very tired.

THursday 17th Sept saw Richard after school again and again he seem good and less tired. Still not eating proper food, but has a dietician appointment next week at N&N so hopefully that will get the ball rolling.

Friday Richard went to Addenbrookes for his blood tests and to see his consultant, Richard rang to say this went well, but was extremley tired so couldn't give the details.

There will be no Blogger until early next week as i won't be seeing RIchard until Monday with El's and Jude.

I will up date if there is any proper news. Thanks
PS, Richard no longer has the lap top but hopefully will be Home soon so you can email away then. Cheers

2003-09-14T06:06:00.000-07:00

Saturday 12th and Sunday 13th

Richard is comfortable and getting the the drugs he needs to feel better ........and bored! Always a good sign. Not much to say other than Richard is stillon Ward C8 until a C10 bed becomes available. The doctors are taking a new course of action, what that is in detail i'm afraid i do not know. Hopefully find out Monday.

Richard temp is down and and has remained down. He has had visits from his parents and sister over the weekend.

2003-09-12T03:38:00.000-07:00

Wednesday 10th
Richard is resting at home with his parents and spending alot of time in bed catching up with sleep and being tied to the PEG for food. Got to watch the England game, so can't be bad.

Thursday 11th RIchard was brightish on the phone but still very tired and felt generally ill. Haven't been able to visit Richard until all my cold systoms have gone, so i can only up date on conversations i've had with Richard over the phone.

Richard called with bad news at 8pm Thursday night to say that his temperture had risen from 37 to 38 and Addenbrookes wanted him back in again. Obviously he wasn't happy as was looking forward to the clinic appointment at Addenbrookes to review his drugs etc and speak to the consultant.

So Richards parents took Richard to A&E and Richard spent the night in the Observation UNit (or a unit of a similar kind) as there is a huge lack of beds at the moment. Ward C10 said at 11pm that Richard had arrived and was settled and comfortable.

Called A&E this (Friday 11th) morning and was told Richard had been moved to Ward C8. The staff nurse on this ward said Richard was again comfortable and was having his medicines.

Finally spoke to Richard this morning and he had a good night his temp is down and he is on the usual antibiotics but is yet to see the C10 doctors. When a bed becomes free Richard will undoubtably be moved back up where the specialised staff will take care of him.

Teresa Chapman the Pre-transplant Nurse Practitioner (point of contact on any issues need answering, lovely lady!) said that it is still very common for transplant patients to come in and out up to 3/4 times after the transplant, as Richard has. Apparenly up to 75% of cases go back and fourth and they will always treat it as an infection whilst looking for the reason even if they find out its GVH or GVL (which are not classed as infections) they need to be on the ball and missing an infection could be dangerous.

So as usual Addenbrookes are doing everything for Richard and i will up date Blogger when i know what the course of action is.

Please don't worry as this is all part and parcel of Richards recovery. It is traumatic for Richard most obviously to have to go back and fourth and generally be the victim of Cancer, but i do realise it is upsetting for his friends and family too, close to him or reading this , but we are VERY positive and looking forward to him returning home where he belongs!! Chins up to you all.

2003-09-10T08:52:00.000-07:00

Thurs 11 September

Oh my goodness has it really been that long, i do apologise for not keeping this up to date. I'm afraid i had an awful head cold so wasn't up to remebering my own name let alone writing Blogger!! Lets get you all up to date.............the main thing is all is well.

Richard arrived in Addenbrookes late Wednesday night, so woke up in ward C10 on Thursday 4th Sept tired and still with a high temp. The tests were rolled out to find the reason, as before. As before Richards attitude was very much he was pleased to be in there being looked after as he felt relatively rough on Thurs and was hooked up to the normal antibiotics and PEG. Lots of bed rest.

The doctors saw him and did the normal CT scan to see if the chest infection came back.

Come Friday 5th Sept and the weekend it was just a routine of anitbiotics to bring the temp under control. The doctors were talking ofpossible Graft v Host decease again as RIchard had an rash on his hands and shoulders. They put this down intially to the antibiotics allergy but beig that he came back in again they had to discuss whether it was something more. The doctor over the weekend is just cover and to maintain normal medication and emergency stuff, so RIchard knew he wouldn't get and more info until the doctors and consultant round on Monday.

Richard temp went down and stayed down for the rest of they stay. The doctors will look for a cause of infection that is causing the temp, but sometimes they will not find anything and just treat the systoms.

Richard did venture downstairs at the weekend fora hot choc and a paper and to people watch as you do, watching life go by. Much needed after being stuck in his ward room again. Richard has remained throughly positive during his visit but is eager to get back to his parents and to try again at being out!

Friday 5th Sept the doctors were encouraging Richard to put steriod cream on the itchy rash, which seems to have worked again, so they are again not going to administer the steriod by drip, as this could overload Richards kidneys. They would only do this if they were sure it was GVHD.

Monday 8th Sept the doctors were talking about Richard going home, but were cautious due to Richard kidneys not functioning properly. They felt the anti- rejection drug ( sorry forgot how to spell it, cyclos sporine!) due to its strengh was over loading the kidneys. They needed to consult the head of the dept to discuss a possible change of drug, and whether Richard could be let out.

Tuesday 9th Sept they decided Richard could be let out without the anit-rejection drug and anitbiotics until Friday when he would be reviewed by doing tests in the day unit on Friday. So Richard is a free man again, but unfortunatley he was only released late last night due to formalities. So is very tired but is taking it easy resting.

Third time lucky! Well i will keep you all informed soon of Richards progress. Thanks for reading.

2003-09-03T13:05:00.000-07:00

Wed 3rd Sept

Went over topick Richard up with El's. Very emotional and proud of my grown up school girl and my husband being out and getting himself better to come down to see El's go to school.

He was fragile and cold but was proud of El's, she looked gorgeous.

I then took Richard to the N&N for the drip, after waiting a while RIchard was set up, i wentot get El's and returned to pick Rich up.

Still very weak, i dropped Richard at his parents for a rest and sleep.

I was suppose to have called round with El's and Jude at 6pm but ater dropping Rich off i started to feel ill and seem to have a head cold.

Rich called at 6.30 to say his temp had gone from 38 to 38.5 and even 39 inone ear, but he felt fine. Addenbrrokes none the less want him back.
So once again my husband is on his way back to Addenbrookes for more tests etc. Hopefully not for too long, but the anti-biotics are for 6 more weeks so time will only tell.

I will do my best to keep this Blogger upt o date as i realis eit is the only source of information and some of you have been worried by the lack of info. Sorry, i may not do it as a daily diary but i will summarise the situation within every 3 days.

2003-09-03T13:01:00.000-07:00

Tues 2nd Sept

Richards mother goes to pick him up, which i later find out is not just for the night, but that they have managed to arranged to let Richard go daily to N&N for the antibiotic drip, but he has to take the medicine given to him by Addenbrookes and then give it to N&N to administer all because of funding and politics!

Anyway he didn't get home till 7ish as waited for prescription at hospital. Very tired and went to bed.

2003-09-03T12:57:00.000-07:00

Monday 1st September

Not sure how the day was but know the doctors said Richard could come home to see El's go to school and then return. They are trying to get N&N hospital to take Richard on as a day patient and administer his drip. Lots of politics and to do with money, hope they see theres a patient called Richard underneath it all.

2003-09-03T12:54:00.000-07:00

Sunday 31st August

Saw Richard today and after he had a shower, we went downstairs and spent the rest of the day approx 3 hours down there. The hospital, his room and the smell of te food is making Richard feel worse, so he is looking forward to getting out.

Unfortunatley Richard is still unable to eat, but likes to have the odd hot chocolate.

His temp was maintained and one antibiotic drip finished and leaving just the anti-fungi drip they are talking of Richard coming back Tuesday night and seeing Ellie go to school for her first day, and then returning on the Wednesday. Should know tomorrow on consultant rounds.

Richard feeling better but desperate to get out.

2003-09-03T12:48:00.000-07:00

Sat 30th Aug

Richards counts have gone down as they do with infection about 1.3 i think (sorry haven't the figures in front of me).

Otherwise still weak and stayed in bed whilst his parents visited. Temp maintained normal.

2003-09-03T12:45:00.000-07:00

Friday 29th August

Thursday night Richards temp peaked to 39 and then 40, when he experienced uncontrollable shivers, the nurses helped him throught the night with medication as best they could.

I visited Richard to find him lying in bed but in general good spirits, Extremley tired from the night He still was very much ill and weakened by the whole experience. He was on PEG food and also recieveing an anti-fungus antibiotic they started that morning. I arrived and within mins we were down stairs for Richard to have a CT scan of his chest. (Where there was a previous infection).

I mentioned to the nurse that Richard sounded blocked up in the nose and looked red across his nose, so they checked the sinuses as well.

Richard rested the rest of te day in bed as was chilled. he doctor said before i left that they found a fungi infection on the chest again but not on his sinuses. As he was already on the correct anti-biotics they would monitor Richards temp etc.

Temp stayed normal but low on fluids. Had fluid drips and Magnesium. Plus good old PEG food.

2003-09-03T12:39:00.000-07:00

Thurs 28th August

Richard was allocated a bed on ward C10 late on Wednesday night. He still had a temperature of approx 38. Unfortunately while down in the observation ward Richard collapsed, he fainted. A nurse came in to find him on the floor. Richard said he could get himself off the floor and found it a terrible experience.

Today consisted of swaps taken to test for viruses and continuous anti-biotics to combat the virus. They basically have to hunt the body for the reason to the temp.

2003-08-28T02:39:00.000-07:00

THANKYOU - Just a quick thankyou for all of your cards, emails and calls supporting Richard. He will be out again soon so please don't worry. Thank you for all your welcome out notes too...........hold that thought!

Love

Richard, Sally , El's and Jude

2003-08-28T02:32:00.000-07:00

27/8/03 (1st day out) Picked Richard up to take him for a blood test. Waited a long time in the waiting room, only to find out that they couldn't do it as Richard had taken some medication that would effect the test. So we will go again tomorrow morning.

Richard was very delicate and tired, so returned home. At lunchtime went to bed to rest and also have to start the feed through his PEG as this has to be down 16 hours a day.

I had agreed to return at 5.30 with the kids for an hour. Unfortunately the kids played up again. They are very tired and unsettled. Thought best to leave as Richard needed peace and quiet plus he felt he had a temperture.

After Richads parents taking his temp and it being 38.5 then 38.6, Addenbrookes decided that Richard needed to come back in. This is very normal as up to 40% of patients return with complications. Unfortunatley due to Richard only just being released he would have to return to Cambridge. If it was a couple of weeks in i'm sure it would have been N & N.

A very stressful and disappointing moment for everyone as Richard was so pleased to be in a comfortable enviroment surrounded by family. It is for the best to nip these virus/bug in the bud. I believe it was all due to the stress and anxiety of leaving, as there is alot involved, and to remember, plus the anticipation of coming home. Also Richard Neutropine levels were resonably high when leaving. We will find out the diagnosis in the next 48 hours, whilst Richard remains in the hospital for this duration.

His parents took him at 8.30pm to Addenbrookes A & E ( as the C10 ward was full), where the C10 doctors were going to check him.

I called the C10 ward at 11pm, and was told he was comfortable but still with a temp, and that he will remain on the A&E Observationward until a bed had become available.

2003-08-26T14:22:00.000-07:00

26/08/03 (1st evening out)

Richad was told by the doctor in the morning that he could return home. He then had to go throuhg all his medication and learn how to us e the different PEG pump etc. So alot to tak eon plus the prospect of leaving and seeing his children.

He's out!!!! Couldn't let all you blogg peeps miss out on the brilliant news. Picked him up 5pm today. Hes at his parents in Norwich and after the tearful reunion with El's and Jude we had an eventful journey home. Lets just say the kids were tired with excitement and Richard knew he had made the right choice to stay at his parents initially!!

Rich will be there to get used to things before returning home. This message will probably be deleted when Richard undates yesturdays blogger and todays, but i thought i would let all of you know!.

Importanly though this blogger website will carry on whilst Richard is experiencing being back home and new challendges that come with this. Thankyou all again for reading. Sally

Oh and this message will self distruct in 2 seconds (sorry always wanted to say that!!!)

2003-08-25T04:33:00.000-07:00

24/8/03 (BMT + 27 days) - Counts for today White blood cells 5.9, Haemaglobin 11.4, Platelets 134, Neutropils 3.90 - slight drop from day before but still very pleasing.

Eating is starting to pick up again with the help of the Irazapan (probably spelt nothing like that but thats how its pronounced !!) and i was able to eat most of my Steak Pie, Chips, Peas and Carrots from the main canteen.

2003-08-24T07:31:00.000-07:00

23/8/03 (BMT +26 days) - Counts for today are white blood cells 6.6, Haemaglobin 11.6, Platelets 157, Neutropils 4.90!

Saw my sister on her return from her and her families well earnt holiday to Disney World USA.

Once again tried to have some food downstairs, not too successful at lunchtime but for evening after using Irazapan. Also i had no sickness/vomiting at night. The burger king went down very well at tea time though. However the sideeffets of Irazapan make me extremley sleepy and i consequently missed out on Fame Academy, Stars in their eyes, and most importantly the Premiership!!!

2003-08-23T07:36:00.000-07:00

22/8/03 (BMT + 25 days) - Counts for today White blood cell 4.9, Haemaglobin 11.3, Platelets 154, Neutropils 3.20. These are now all within the normal ranges albeit right at the lower ends.

Junior doctor scared me today by saying that it could be nearer the end of next week for a release which contradicts all that has been said before. I am now trying to put a strong case together for Tuesday. It is well known that my main problem at the moment is sickness and that i cant put anything down, my case is that the room and the hospital are partly responsible for pysologicaly making me unwell and that if i went home that would be a whole new feel factor.

2003-08-22T02:37:00.000-07:00

21/8/03 (BMT + 24 days) - Feeling better with every day, i think all part of the new cells growing and now that the neutropil counts have risen any infections / fevers are dealt with quite easily.

As previously stated my main problem is continued feelings of sickness, psychologicaly brought about by my surroundings. For instance today instead of eating the hospital food in my room i had a baked potato in the main Addenbrooke's canteen and it stayed down perfectly.

The consultant officially stated that i could go home Mon/Tues time next week which i'm really getting excited about for lots of reasons but now having not seen Jude and Ellie for 5 weeks seeing them again is going to be the main thing i'm looking forward to.

oh and thankyou to Auntie Claire for her surprise visit, it was good to see you!

2003-08-21T03:49:00.000-07:00

20/8/03 ( BMT +23 days) - Todays neuropil count was 2.40, very pleased with that.

Had my stiches out of the Hickman line and skin biopsy, very pleased to see the last of the Hickman line.

Had a CT scan which revealed that the fungi infection i had on my lung, has now cleared up. Which means one less bag on the stand! Therefore less for the poor kidneys to deal with.

Once again popped out to the Jubilee Gardens, which is always a nice bit of exercise and takes me away from my four walls. I still have continued feelings of sickness that i believe to be psycological, due to my surroundings and was physically sick generally, (just mornings and evenings).

Finally on the doctors round the doctor suggested that i could be out either this weekend or the beginning of next week. Not getting my hopes up until see consultants tomorrow.

2003-08-20T02:14:00.000-07:00

19/8/03 (BMT + 22 days) - Todays blood counts are, White blood cells 3.1, Haemaglobin 11.4, Platelets 11.2, Neutropils 1.80 so once again a very pleasing improvement.

Advised today that my Kidney/Liver function tests are back to normal so Cyclosporin will be resumed.

Sal and I celebrated our wedding anniversary with balloons and carbonated grape fruit juice in pink champagne glasses !! Plus Richard sent me a lovely bouquet of flowers!! We had a lovely day and Richard managed to walk down to the Jubilee Gardens with me. We managed to have a hug for the first time in 4 weeks (as Richards counts were up and is no longer neutropaenic), so the best present of all.

Unfortunately most of the day was feeling sickley, doctors putting it down to my new system slowly coming together and i threw up about 4 times.

2003-08-19T05:45:00.000-07:00

18/8/03 (BMT + 21 DAYS) - Todays blood counts are, White blood cells 2.2, Haemaglobin 11.7, Platelets 89, Neutropils 1.19 so another pleasing upward trend.
Managed to get out of the hospital for a nice sit down in the gardens with my parents and i walked !! doesnt sound like much but certainly big steps for me at the moment.

Had a chest x ray to check everthing ok later found everything fine. Consultant advised before i could go home which isnt likely for a while yet the GVHD will need to settle down, counts need to be higher, Fungus infection problem needs sorting out and i need to be stronger with my eating.

2003-08-18T09:09:00.000-07:00

17/8/03 (BMT + 20 days) - Reached the 4 week mark of my stay in hospital.
Neutropils around the 0.50 mark so fluctuating a bit at the moment.
GVHD rash no worse and seems in control with the steroid cream i have been given for it.
Been told that that my Liver function test results are a bit high and i will need to be re-tested. They said that the 'bit high' is quite normal and it just means they may have to cut the level of drugs they are giving me.
Sal and i had a game of Millionaire on the CD rom and i have to say she answered more questions than me - mis-spent youth reading all those
childrens books i think !!

2003-08-17T03:04:00.000-07:00

16/8/O3 (BMT + 19 days) - Neutropil count back uo to 0.63. GVHD rash has got no worse. And once again im feeling reasonably well although most of the day i was cold and shivery for some reason. Because my counts were up Sal took me out of the hospital for a short while in a wheelchair which made feel really good as hadnt be out for a while.

2003-08-16T03:19:00.000-07:00

15/8/03 (BMT + 18 days) - Had my heart monitored first thing as there was a suspicion it was slightly longer on one side. No results on this however they did say that it has a good slow beat.
Doctor on the rounds seemed to think GVHD rash was slightly better.
My Neutropil count had dropped to 0.3 today, apparently these dips are quite normal and may well rise substationaly tomorrow - however it seems i'm back to being Neutropenic hopefully for the time being.
Overall today i have been feeling a lot betterprobably because of no temperature spikes.

2003-08-14T07:40:00.000-07:00

14/8/03 (BMT +17days)

AM : Woke up feeling rough, not a great sleep. Was sick in the night and twice this morning.

Nurse came in to change needle in hand to one in the arm. Hickman line dressing changed as was biopsy dressing. Neutrophile levels amaxingly 0.65!!! So officially i am no longer Neutropeanic, so lots of snogging (sorry i put that -Sally!)

Doctor came in and explained that the CT scan had bought up the infection close to the lung as a Fungi infection. The antibiotics i have been taking unfortunately are not for that type of infection. So since last night i am on a new course of antibiotics. So you never know my temperature may stabalise.

Runny nose has been noted and swab will be taken to see the type of virus causing it. Rash again has been checked but waiting for biopsy results. Need the steroid cream though as feeling very itchy.

Now the neutropheal levels are above 0.5 my body can start to fight infection, if just a little bit. My white blood count altogehter is above 1.0!

PM : Have had some anti-sickness drug to hopefully relieve the nausea i have started to get again.

Seen Doctor Crawley my consultant on the afternoon rounds and he is sure that the rash is a typical GVHD rash. Apparently GVL dosen't show as a rash but would show more in my cells. (not quite sure what it means!) So i have been taken off the dihorrea drugs to see if the diahorrea comes back which may also indicate GVHD, also liver problems can be a symtom too. So once they are more sure of the GVHD they will start the course of steriods.

I keep being told that showing abit of GVHD is not a bad thing and normally steriods can clear it up. Anxcious of the unknown as there are obviously different levels of GVHD to worry about. So keen that they start treatment asap, but understand they have to wait for ALL the symtoms to be sure of the diagnosis and not mask the systoms with medication first.

Still very itchy and waiting for steriod cream, very nauseous and don't know what to do with myself as continuously tied to drip. Oh have low magnesium levels in my blood, so having that topped up.

2003-08-14T07:06:00.000-07:00

13/8/03 (BMT +16days) Woke up to a temperature of 36c which was a relief as i was feeling a bit rough. Wondering if the lowering of Dia-Morphine to 0.5ml per hour is making feel not so good.

Rash continues and starting to feel uncomfortable as it is becoming quite itchy. The rash is mainly on my shoulders and back and agrevated by the heat. It has in the last few days appeared on the palms of my hands. With it appearing on my palms and now that my Neutropael levels increasing to 0.35 may indicate that it is GVHD / GVL and possibly not an allergic reaction, as allergy rashes rarely appear on the palms.

My aneamic levels required a blood transfusion first thing (from now on throughout my life if i have any blood transfusion, the blood will have to be irradiated to remove any unwanted white cells, to be on the safe side) Had a Ct scan (not nice as loud and very claustrophic) on my lungs to establish what type, if any, infection i had around the hickman line / on or around the lungs. In comparison the on going chest x-rays already have shown an improvement in the infected area since Friday.

Dermatologist confirmed that rash probably either a medicine rash or GVHD / GVL. They decided to do a skin biopsy on my hand under local anaesthetic, to rule out any other possible causes. Due to the type of rash they cannot distiguish between an allergy rash and GVHD /GVL rash even under the microscope. Both would be treatable with Steriods. Was prescribed steriod cream until biopsy is back. If rash GVHD i will then be given steriods intreveniously.

Came away from my visit with the Dermatolgist with shivers and high temperture. Not feeling too great.

My Hickman Line was removed as was causing an infection. Possibly the reason for the temperature spikes. Local anaesthetic was used for its removal, but didn't come away easily, which Sally can vouch for as she was present and thankfully isn't sqeemish, as had to assist nurse!!)

Finally later on the needle was put into my hand in order to administer drugs, normally given through the Hickman Line.

2003-08-14T06:36:00.000-07:00

12/8/03 (BMT +15days) Temperature went up to 38c. With our heat wave made me feel unwell. Haven't had any air conditioning since Sunday!

Doctors still unsure whether to remove Hickman line, incase the infection improves. Doctors still montioring rash but will refer me to Dermatology Dept to have it investigated further. In the meantime i have decided not to use the heavy duty antiseptic wash previously given to me, incase this could be the cause of the condition.

Morphine down to 0.5 ml per hour, mouth feels ok at this level, so may try to go without altogether.

2003-08-13T10:29:00.000-07:00

11/8/03 (BMT +14 days) Dia-Morphine levels down to 1 ml per hour. Neutrophile count up to 0.13. Can eat alot better as mouth not so sore ( and talk alot better!!)i. Had to have a platlate transfusion as platlate levels were standing at 9.2. As i have sadi previously these transfusions are relatively normal and frequent.

Have developed rashes on hands and shoulders since Saturday. This was bought up in doctors round. They have started to monitor this, but at the moment the Hickman line infection is their priority.

They will monitor the rash and other symptoms incase of possible GVHD but also what can occur during the grafting of Joannes cells is Graft versus Leukemia. Generally having the GVL rash is something that is the doctors like to see, showing everything is going according to plan, GDHD is more the desease and possibel rejection but again in a small amount, ie a rash and minor systoms can be easily treated with Steriods to hopefully 'nip' it in the bud.

The rash also could simply be an allergic reaction to medication. Time will tell.

2003-08-11T07:04:00.000-07:00

10/8/03 (BMT + 13 days) - The doctor advised that there has been a trend in my Neutropil count which suggests engraftment is taking place. On Fri it was 0.03, Sat it was 0.05 and today 0.08 so this is a little bit of good news and probably is a factor in the way i had been feeling. However normal levels of this is in the range 5 to 12 so lots of work to do yet !!

Elsewhere my mouth seems to be feeling a bit better and drinks seem to be easier to drink although there is the usual appetite for certain foods problem, nausenous is slightly better, diarorea problems much much better.

The doctor's are slightly concerned about some infrequent temperature spikes i'm getting, the feeling is it may be something to do with my Hickman Line where for about a week it has been slightly pinky with a possible infection at the entry site. A few small tests are to be carried out with the chance that the Hickman line may have to be removed.

I am also getting a few rashes around the body. This will be monitored probably with the help of an appointment to the Addenbrookes Dermatology/Skin specialists. At this stage the reasons for the rash are unkown as they can be caused by any number of things including GVHD.

2003-08-10T06:39:00.000-07:00

9/8/03 (BMT + 12 days) - Finally made it to the 3 week mark for being in hospital which seems to have really flown by.
Once again feeling a little better each day. Doctor's advised that engraftment of Jo's new cells will have just about started and is probably a contributing factor to this.
Probably my worst feeling at the moment is my mouth which is sore but tolerable with the Dia Morphine. i am able to increase the DM dosage but would prefer to hold on since the Peg feed is allowing me take on intravenous foods.

2003-08-09T07:18:00.000-07:00

8/8/03 (BMT + 11 days) - Had some recent family visits which im grateful for especially when these visits can be a 2hr drive away and i may not be in a positiion to talk/entertain. There is often a nice cool carton/bottle drink which i may have a real craving for which family are often able to bring in.

Today i was taken off the 2 large pumps used for anti-sickness and anti-diaroreah, these had been with me for a few days and their exclusions are positive signs in the way i'm feeling. The fluid build up problem mentioned yesterday still continues and i had a chest x-ray for this which didnt show up anything worrying.

2003-08-09T07:01:00.000-07:00

7/8/03 (BMT + 10 days) - Continued with the same rate of DM, they seem to think this rate may need increasing but i would like to hold out for as long as possible mainly because it plays havoc with your dreams and sleeping pattern. Yesterday i woke up thinking it was 6 in the morning but it was actually 6 in the evening!!
I'm starting to notice a few signs of improvement with the way i'm feeling and this seems to come across from various doctor's observations as well.
One of my biggest problems is that due to the huge amount of liquid i take on board with varios drips its difficult to get rid of it and it has made me feel very wheezy making breathing difficult, tolerable most of the time but diffficult at night.

2003-08-07T07:36:00.000-07:00

6/8/03 (BMT +9 days) - Dia Morphine dreams are so vivid they have made me feel a little bit wary about falling a sleep just in case i vividly pull one of the lines out. Theyre very necessary though as my mouth would really feel awful without. Doctors say that i can up the dosage levels if i want and most are above my current level of 1.3 ml/hr but i would like to keep things as they are.
I am feeling a little better everyday although because im so drugged up i am actually sleeping on off all day. On the one hand this is good because time is flying but on the other hand getting a bit worried about coming off the DM when it needs to happen.

2003-08-06T03:46:00.000-07:00

5/8/03 (BMT +8 days) - I have now been on the Dia Morphine for a couple of days and i'm beginning to suss it out a bit. Whilst its effects are very good i.e. it makes the mouth and everything else feel better it does make you feel extremely drousy and the dreams at night are very weird to say the least.

Signs of Jo's new Stem Cell engraftment i believe should take place from around + 14 days which i'm hoping will coincide with an improvement in my general health due to a whole new imune system being built etc. As previously mentioned they measure counts in white blood cell (wbc), red blood cells (rbc) and platelets and i'm being continually monitored for this.

Until my health improves life will be difficult as the level of medicines im receiving will be a lot making manoeverability difficult, for example i was attached to 5 separate things last night in bed alone. The drousiness doent make you feel like doing anything anyway, i have no concetration levels for newspapers or tv either - someone tells me there's a heatwave going on out there!!

Jo, Dave and family took off for hols today. hope the flight went ok, have a great time as i think you really deserve a good one and send my regards to Mickey!!

2003-08-04T21:12:00.000-07:00

4/8/03 (BMT + 7 DAY) - The usual cocktail of drugs continue. I have now taken on added mouth pain where the mouth becomes ulcerated due to the chemo.
To counteract this they give you Dia-Morphine which makes your mouth a bit better although i syill cannot eat - as it is morphine it also makes you feel slightly better generally.
So the stand was full today - peg feed, dia morphine, Cyclosporin plus i nearly always have 2 hand pumps going which are needles into the arm yo counteract sicknesss / diarrarea.
To make life a little easier i have a comode which seems to get nearer the bed every night!!.
Finally my hair is starting to fall out, it is expected hair loss will last 2 to 3 months.

2003-08-03T13:56:00.000-07:00

3/8/03 +6BMT day - Seen Richard today (Sunday). Throat worse and doctor says it will worsen for another couple of days and then begin to get better. So at the moment Richard is having Morphine, and mouth washes to help keep mouth moist as no syliva. This will help stop plaque and ulcers forming.

Holding alot of water retention due to amount of drips. This makes Richards face very uncomfortable and hard for Richard to concentrate. Richard has been suffering from headaches and high temperatures due to the glands in his face being up and fluid retention. He receieves a drug when needed to reduce the fluid over a period of time.

Still has lots of drips and i believe diahorria and nausea are the same. Richard couldn't talk without pain so wrote messages. Very tired due to certain drugs and the fluid retention.

'Text book symtoms' even though the man i love is going through alot of discomfort, it is all 'normal' for his treatment/illness.

I have agreed with Richard to cover Blogger, but when he is able he may replace or add to my news if i have been inaccurate in anyway.

2003-08-03T13:31:00.000-07:00

2/8/2003 BMT +5 day (On behalf of my gorgeous husband, kids amazing father and best mate on this earth) Hello its Sally writing the update today. All i can say is that Richards throat has got worse, as he was pretty much unable to talk late afternoon today. This is due to the chemotherapy slowly shutting off the glands that produce syliva and also the lining of the throat slowly disappearing. Another side effect of Chemo is the loss of hair, which is beginning to start. Richard was still able to Blogger yesturdays post and also email me. So still fighting strong.

He is still on alot of drips anti-rejection, flushing solutions, morphine, and others. A couple of pumps on his arm to help reduce diahorria and nausea. Richard is finding it hard to move around, even though he is confined to his room due to his Neutropaenic state.

2003-08-02T04:57:00.000-07:00

1/8/03 (BMT +4 days) - Written a bit early today but thought id make the most of getting the laptop out while vaguely well enough to write anything.
Its going to sound like deja vu but continue to feel extremely grotty all the time. The problems are all the same now with the added thing of a dry mouth. All these problems are compounded by the fact that i am on a constant drip usually for feed or Cyclosporin making getting to where i need to get quick difficult. I have been given several things for my mouth which help a little but the dryness is also contributed by dehydration because it hurts to take liquids on board - one vicious circle really.

The constant battle is to find something that does not make me feel sickly, at the moment in time jellies are particulary appealing.

2003-07-31T09:23:00.000-07:00

31/7/03 (BMT +3days) Had an eventful night as recieved second bag of food through my PEG, needless to say this didn't agree with me, so felt exhausted and very nauseous in the morning. I need to recieve this feed even though it disagrees with me to enable my donated to cells to eventually enter my bone marrow etc.

Having a drug change for the diahorrea. They are continously trying to find a drug, to surpress the systoms, that agress with me. People react differently to the treatment, so it will be trial and error, but they are always doing the upmost to make me comfortable.

Managed to stay out of bed for most of the day and watched the cricket (unfortunately). I have recieved a drip of Cyclosporin (anti-rejection drug), which has been given to me on and off since pre/post stem cell donation, on Monday and Tuesday.

Have been told that i will not be recieving a feed through the PEG tonight, HORRAY, so as to give my body a rest. They will then resume with a different type of feed that may be more compatible.

Sally has done what she does best today and gone shopping, at Tescos. Needed cardigans to get round all the tubes, plus needed more essentials.

Nearly forgot to say i'm officailly Neutropaenic. This mean that i no longer have the white blood cells that fight off infection.

2003-07-31T08:13:00.000-07:00

30/7/03 (BMT +2 day) Sickness and diahorea continues but medication changes regularly to surpress the systoms. Have been fed by my PEG (straight into my tummy)at night, which isn't agreeing with me but gives me the much needed norishment to help the donated stem cells to eventually establish themselves within my bone marrow.

Sally arrived at 2.30ish and stayed the night. Slept most of the evening due to exhaustion from sickness.

2003-07-30T08:06:00.000-07:00

29/7/03 (BMT +1 day) Second day of sister Jo's harvest. So could be construed as being BMT day x2, but we will call it BMT +1 day!!

Harvested cells again went in without any immediate problems, even though continuous use of anti-rejection drugs used all the time.

Elsewhere continuous feelings of unwellness. Coupled with difficulties in mobility as always on a drip, some of which can last up to ten hours!

On a positive note i managed to get out of bed and focused enough to read a paper, for the first time in ages.

The support and care that i have recieved from nurses, family and friends has been totally overwhleming and uplifting. If any of you are reading this many thanks to you all.

2003-07-29T06:09:00.000-07:00

28/7/03 (BMT DAY) Sister Jo had her stem cells harvested for 4 hrs. It was later found that this was not sufficient in quantity for the full transplant so she is required to return tomorrow.
In the meantime the cells that were harvested were fed into me. So far so good. Cells are doing well with the anti-rejection drugs that are given over the next 6 to 12 months.
Continue to feel very grotty with feelings of sickness and darrhaea throughout.

2003-07-28T00:45:00.000-07:00

27/7/03 (BMT -1) - (Sally is helping by typing this and will take over the reins of 'Bloggering' if i am not feeling up to it) -Same as previous days, couldn't sleep, stuffed up, unable to focus phisically and mentally. Unable to take any visitors or phone calls, outside my immediate family.

Sally arrived at lunchtime and after spending the afternoon together waiting for the drips to finish, we eventually ventured outside at approx 4.30pm. This was a much needed retreat from these four walls, though they have been brightened up by Ellie's and Jude's handy work. I was desperate to get some freash air, but felt nauseous, and extremley bloated so a trip in a wheel chair around the perimeter of the hospital was as adventerous as we could get. Good to get out and breath fresh air.

Have been on a syringe pump, which is slowly intrevenously helping to reduce the nauseousness. Also after Sally's arrival i felt alot more able to relax and managed to snatch 2/3 well earnt naps, which i felt much better for. Still disorientating not being able to focus and bloating getting worse.

After our walk the dicision was made between Sally and I, that she would stay on the ward overnight. This was not due to an increase in my physical symptoms, but just as the much needed moral support over the next 24 hours.

2003-07-27T02:12:00.000-07:00

26/7/03 (bmt-2) - Very similar day to bmt -3 day except worse, completely knocked back by it all and cannot eat or drink due to severe nauseousness - looking forward to some time out of hospital on bmt-1 day.

2003-07-26T00:09:00.000-07:00

25/7/03 (BMT-3) - A day of Chemo which seemed like a long drawn out affair since chemo is quiet potent and they like to dilute it down with lots of saline which means lots of bags on stands taking a lot of time and not being able to move very far. Not that i really felt like moving very far as i felt completely rough and uncomfortable not just nauseousness but completely being knocked back by the TBI.
Not sure how regular i will be able to make these updates now as feeling more rougher by the day and thats before the end of Chemo and their severe side effects - warn warn.

2003-07-25T01:40:00.000-07:00

24/7/03 - TBI now completed and decided to end up on a good note with The Beatles and in particular 'Hey Jude' for obvious reasons. A special thanks is warranted to the Radiography team - Karen, Justin, Marlisa and Nyssa who made a very scarey experience feel not too bad and i hope to catch up with you all sometime in the future.
Fri and Sat is intravenous Chemotherapy treatment followed by a rest day on Sunday which will hopefully include a day trip out with the family possibly for a much needed Sunday roast.
TBI followed by Chemo is known as conditioning the idea being to get rid of all the bad cells prior to the infusion of Jo my donor's good cells. That will take place on Monday and following that over the days, weeks and months will be a long anxious wait to see if my body wants to accept or reject them. The reaction between my body and Jo's cells is known as Graft Versus Host Disease (GVHD) and can be graded from 1 to 4 where 4 is potentially fatal. A little bit of GVHD is considered to be not such a bad thing as the new cells can react and overpower any remaining bad cells. To minimise the effects of GVHD a drug called Cyclosporin is prescribed which starts off at a high dose and then reduces down to nothing over the next 6 to 12 months. The reduction of this drug is a very careful balancing act as on the one hand they want to carefully introduce my new inmune system but at the same time dont want to hold it back too much as the new immune system is quite effective in kicking out any old unwanted bad cells.
The other concern at this time is that without a fully functional bone marrow my blood counts will be low. They can boost Platelet and Haemaglobin levels through blood transfusion but the white blood cell counts will take time to pick up. During this time i will be completely susceptible to infection so have to be completely careful at all times with just about everything i do.

2003-07-24T03:50:00.000-07:00

23/7/03 (BMT -5) - Woke up feeling sickly and promptly threw up the Ready Brek and Orange juice i was given. Spoke to the Dr who advised they will try another formula of anti-sickness tablets to see if things will get any better.
TBI went smoothly - to make things easier for you they allow you to listen to your own CD, today i chose REM yesterday it was the Rolling Stones.
Had 3 sets of visitors today - thanks to all of you who came, it was great to see you.
Generally feeling tired and sickly but trying my best to do the right things like exercising, practising good hygiene and eating as much as possible although this is proving difficult at the moment.

2003-07-23T07:44:00.000-07:00

22/7/03 (BMT-6) - Now half way through the TBI sessions and they say i'm doing quite well ! Not sure quite what that means except to say their previous patient feinted ! Now feeling sickly nearly all the time and to think about some of the hospital foods they're serving up makes it feel worse - not an experience i've ever had before ! - hate to think how i would actually be feeling without the anti-sickness tablets they give you.
Managed to do another hr on the exercise bike and did not need a blood transfusion after all as haemaglobin/anaemia levels have re-stabalised.

2003-07-23T07:36:00.000-07:00

21/7/03 (BMT -7) - 1st day of treatment. Over the next 4 days starting today it will be TBI. It involves 2 sessions a dayof around 20 mins each session. The process is completely painless and involves standing in front of a screen in a very cold room on your own whilst a macine clicks away. After the 2nd session today i felt slightly sickley which is quite normal.
Later on in the evening i was advised i may need a blood transfusion as Haemaglobin level are low - probably someting to do with my hr long session on the exercise bike !
Many people have sent Sally & i their well wishes unfortunately we havent been able to reply to you all but a big thank you to you it is much appreciated

2003-07-23T07:27:00.000-07:00

20/7/03 - After a bit of an emotional goodbye was admitted to Ward C10 at Addenbrookes at 4pm for the start of my BMT treatment. I'm staying in an isolation room (rm 7) whivh has a TV Video, CD player, Fridge, Phone, On-suite shower and a good view.
After a bit of form filling in i made the positve step of using the exercise bike located just outside the room.

2003-07-19T00:04:00.000-07:00

18/07/03 - Last appointment as an outpatient today before going in on Sunday.
This was the Dermatology department at the N&N who have been monitoring a Lymphoid Leukaemia bump on my leg. Despite increased medication levels it has still not settled down although it has fully healed following minor surgery to establish exactly what it was.
The Dermatology team today advised that the bump should be continually monitored post BMT. Following TBI (Total Body Irradiation) all bad cells in my body will be killed off. This bump is effectively a lump of bad cells and will probably become ulcerated hence the need for continual monitoring to keep it free of infection to help it heal.
The BMT co-ordinator at Addenbrookes confirmed that it is ok to proceed with how it is and it just reinforces the decision that a BMT is the right thing to do as all other treatments do not seem to be controlling the disease.

2003-07-18T01:09:00.000-07:00

17/07/03 - Saw the Addenbrooke's dentist today. A couple of the teeth are not brilliant in that they are not straight but otherwise they are all clean and gums are healthy. In view of this the BMT co-ordinator confirmed it will be ok to proceed but that those two teeth will need to be removed post BMT.
We also paid a visit to the BMT ward who flushed and cleaned the lines and turned the peg.

2003-07-16T08:14:00.000-07:00

12/7/03 - 15/7/03

AS SAT 12TH WORE ON MY TEMPERATURE ROSE UP TO AROUND 39 C (NORMALY IT SHOULD BE ABOUT 36.5) AND I WASNT FEELING GREAT.
THE TRANSPLANT TEAM RECOMMENDED A STAY IN HOSPITAL ALONG WITH SOME TESTS TO ESTABLISH WHAT WAS CAUSING THIS AND LOTS OF ANTIBIOTICS. THE MAIN WORRY WAS THAT THE NEW LINES MAY HAVE CAUSED AN INFECTION WHICH WOULD NOT BE THE IDEAL SITUATION WITH THE BMT DRAWING CLOSE.
SO AS A PRECAUTIONARY MEASURE I SPENT 3 NIGHTS AND 3 DAYS IN A NORFOLK AND NORWICH ISOLATION ROOM BEING LOOKED AFTER LIKE A KING!! WHEN YOU WAKE UP ON THE 1ST MORNING AND A NURSE SAYS TO YOU 'DO YOU WANT ME TO GIVE YOU A SHOWER' YOU KNOW YOU ARE BEING WELL LOOKED AFTER!!
ANYWAY AFTER MY 3 DAYS ON HOLIDAY I WENT HOME FEELING 10 TIMES BETTER THAN WHEN I WENT IN WITH THE CONCLUSION THAT I MUST HAVE PICKED UP A BIT OF A BUG FROM THE KIDS AS ALL THE TESTS ON THE LINES ETC CAME BACK NEGATIVE.

2003-07-11T13:47:00.000-07:00

11/7/03 - UNFORTUNATELY A MIX UP WITH APPOINTMENT TIMES MEANT WE MISSED MY 1ST ADDENBROOKES APPOINTMENT OF THE DAY WHICH WAS RESCHEDULED FOR 11 AM NEXT THURS. THIS WAS FOR THEIR DENTIST TO CHECK MY TEETH WILL NOT CAUSE ANY MAJOR INFECTIONS POST BMT.
HOWEVER BY NOW I AM STARTING TO FEEL VERY SORE AND TO GET IN FOR 9 AM WOULD HAVE BEEN QUITE AN ACHIEVEMENT ANYWAY. I WAS BARELY ABLE TO GET DRESSED IN THE MORNING AND SALLY HAD TO PUSH ME ROUND THE HOSPITAL ALL DAY IN A WHEELCHAIR!!
MY APPOINTMENTS INCLUDED TBI PLANNING AND CONSULTATION WHICH WENT AS WELL AS CAN BE EXPECTED. TOTAL BODY IRRADIATION WILL HOPEFULLY KILL OFF ALL THE BAD CELLS IN MY BODY PRIOR TO JO'S GOOD STEM CELLS BEING TRANSPLANTED.
JO HAD HER 1ST CONSULTATION TODAY WHICH I GATHER WENT WELL ESPECIALLY AS THE DR HAD A CHILD IN BETH MY NIECE'S SCHOOL CLASS - I HOPE THATS A GOOD OMEN!!

2003-07-11T13:15:00.000-07:00

10/7/03 - MADE THE MISTAKE OF HAVING A LITTLE FOR BREAKFAST ONLY TO FIND THAT THERE HAS TO BE A 6 HR GAP BETWEEN EATING AND HAVING THE PEG FITTED, IT WAS THEREFORE DELAYED FROM 11 AM TO 4PM.
SALLY AND I FILLED THE DELAY UP BY TAKING IN THE SITES OF CAMBRIDGE HOWEVER DUE TO MY LACK OF MOBILITY WE CAME BACK A BIT EARLIER AND SPENT THE REST OF THE TIME IN VARIOUS WAITING ROOMS.
AT THIS POINT I WOULD JUST LIKE TO PAY TRIBUTE TO SALLY WHO HAS BEEN AN IMENSE POWER OF SUPPORT THROUGHOUT, COMING TO EVERY APPOINTMENT WITH ME AND GENERALLY JUST BEING BRILLIANT - THANKS SAL.
THE PEG FITTING REMINDED ME OF THE 1ST HICKMAN FITTING, BASICALLY AFTER A LONG ANXIOUS WAIT SLEEPING THROUGH THE WHOLE THING AND COMING ROUND FEELING VERY CONFUSED.
THEY LIKE TO MONITOR YOU IN HOSPITAL FOR AROUND 4 HRS AFTER PEG FITTING SO FINALLY WENT HOME AROUNF 10 PM FEELING MORE SORER BY THE MINUTE.

2003-07-09T14:01:00.000-07:00

9/7/03 - AGAIN DUE TO THE SORENESS OF THE UPPER BODY DIDNT GO INTO WORK. SHAME BECAUSE IT WAS TO BE MY LAST DAY AT WORK BEFORE MY BMT AND I WANTED TO FINISH ON A HIGH NOTE.
TOMORROW IS THE FITTING OF THE PEG WHICH WHEN FITTED WILL ENABLE POST BMT INTRAVENOUS FOODS TO BE FED DIRECTLY TO THE STOMACH BYPASSING THE VERY SORE THROAT. THIS IS ANOTHER SURGICAL PROCEDURE SO IT COULD BE AN UNCOMFORTABLE WEEKEND FOR ME !!
STILL NO GREAT RESPONSE ON THE LEGS FRONT - HOPEFULLY THATS BECAUSE ITS STILL EARLY DAYS WITH THE 600MG GLIVEC.

2003-07-08T23:41:00.000-07:00

8/7/03 - WOKE UP FEELING VERY SORE BETWEEN THE ARMS DUE TO THE HICKMAN LINE. KIND OF A BRUISING EFFECT AND ALSO SUDDENLY VERY CONSCIENCE IT IS THERE AND NOT WANTING TO MOVE IT MUCH, PROBABLY SOMETHING I WILL GET USED TO IN TIME. TOOK THE DAY OFF WORK AND SPENT MOST OF THE DAY RESTING IB BED. AS MY LEUKAEMIA BUMPS ON MY LEGS HAD STARTED TO RAISE AGAIN STARTED THE 600MG GLIVEC DOSE TODAY BUT NO RESPONSE YET.

2003-07-08T10:57:00.000-07:00

7/7/03 - HICKMAN LINE INSTALLED TODAY. IST INSTALLATION WENT WELL AS WHAT WITH THE SEDATIVE AND FEELING TIRED ANYWAY SLEPT THROUGH IT ALL. HOWEVER AFTER AN X-RAY IT WAS FOUND TO HAVE A KINK. WITH LITTLE ANAESTHETIC LEFT THE RE-INSTALLATION WAS VERY PAINFUL.