Sunday, 30 September 2012

Phase 1 treatment complete.

Afternoon all.

They say Sunday is a day of rest, so I've been resting. Actually I've been very lazy today and have spent much of the day snoozing between meals and my treatment. I guess I have to catch up on the sleep I've been losing at night somehow.

This afternoon saw the final cycle of Rituximab antibody treatment, which was the last treatment I was due to have in this first induction phase of my chemotherapy treatment. All being well if my temperature stays stable overnight I'll be going home tomorrow for a spell.

When I do get home, my bone marrow needs time to recuperate and start doing it's normal job before I have another bone marrow biopsy. That will show how my Leukaemia has reacted to the treatment and what extent if any remains. Even if all of the Leukaemia is gone, which is what I hope, I will still have to go through a second phase of chemotherapy to make sure it doesn't return.

I'll know more about the timing of everything after tomorrow morning's consultants ward round, after which I can hopefully go home for a break.

A few of you may be wondering how my friend from the next bed during my previous stay was. I'm pleased to say I caught up with him a couple of times during the week last week and each time he looked better. I saw him on Wednesday when I came in as an outpatient and again on Friday when I was re-admitted for the weekend. On Friday he was discharged and allowed to go home for a rest which he looked like he was looking forward to. His infection is clearing up and apart from still having a sore mouth he looked like a new person.

I know he's following this blog and will keep in touch by email or phone. He has also vowed to do the Snowdon climb with me so we have a joint goal. It would be good to summit the peak side by side with him to mark the end of our respective journeys to recover from our illnesses, and as between us we cover the Leukaemia and Lymphoma parts of my chosen charity it would be a fitting cause.

Keep up the fight Dean - we've got a mountain to climb together!

My sincere thanks go to those that have started the ball rolling on the fund raising side and made donations to my JustGiving page. Just a sneaky reminder that the address if you are able and wish to donate is justgiving.com/dieseldrinkersnowdon, or you can also donate £5 just by sending a text from your mobile phone by texting RTOR66 to 70070.

There's not much more to say today. I'm waiting to call Andrea soon and find out how Sam got on in his first Rugby games today, so I'll see you all tomorrow.

Thanks again for reading.

Saturday, 29 September 2012

Fund Raising Begins - JustGiving Page

Afternoon all,

I decided that whilst I was sat here today without much to do I might as well get the ball rolling on the fund raising front so I've spent part of the day creating a JustGiving page. More about that below.

I slipped up last night and felt tired when I went to bed so I didn't bother with a sleeping tablet at bedtime. That was a mistake and once again, as I had at home, I woke about 3am and couldn't back get to sleep. Largely the reason was silly things spinning around in my mind. I won't make the same mistake again tonight and will make sure I have a tablet. Thankfully I've managed to catch a short doze this afternoon and hopefully caught up a bit of sleep.

I had visitors this morning in the form of my parents, my sister and one of my nieces, Ellie.

Suzanne, my sister, went for the blood test yesterday that is required to see if she is a match to be a Bone Marrow donor, and bore the bruises to show it. I know she was being sarcastic when she said the Vampires had been after her for her blood, but looking at her arm it looked like she had been attacked and bitten!

Ah well I'm worth it I'm sure.

With such a crowd we thought it best to head out of the ward and went to the main hospital restaurant for a drink, snack and a quick catch up. As always it was good to see them all and it's the first time I've seen Suzanne since this all started.

I was just in the process of setting up the beginnings of my JustGiving page when they arrived so now is the time to expand on that.

As I've said in my previous blogs, I have been inspired to do something positive and raise some money for the charity Leukaemia and Lymphoma Research, which is the only UK charity solely dedicated to research into blood cancers, including Leukaemia, Lymphoma and Myeloma. It is therefore of particular relevance to me and my fellow patients here in hospital. Anyone can get a blood cancer at any age. Around 30,000 people, from babies to grandparents, are diagnosed with blood cancer every year in the UK.

The charities web site contains some fantastic information and has been of real use to me in finding out more about my condition. They also have some high profile fundraisers such as Ian Botham, who's done his various walks to support them, and the 'Pedal for Petrov' campaign currently has a high profile as Aston Villa player Stiliyan Petrov fights his own battle against Leukaemia.

But despite this, huge amounts of money are required to fund valuable research each year and the charity indicates that it needs around £20million each year to maintain the life saving research the charity funds.

If I can raise anything towards that I feel it's something I have to do to give something back to the medical teams that have cared for me, the researchers and scientists that have developed the treatments that are hopefully curing me, and to the patients who in many cases suffer considerably more than me. I feel fortunate enough to have maintained my otherwise relatively normal health through the first phase of my treatment whilst I've seen others who have fared less well and have had a considerably rougher road to travel along.

I've said before that my main fund raising aim is to conclude my 'Road to Recovery' by making the climb up Snowdon in North Wales and that is still my goal. I am in the process of planning for this to happen during the summer of 2013 when the weather will hopefully be agreeable and my fitness will be restored adequately to make the climb.



Already I've had volunteers from all quarters of family, friends and colleagues and hope that the walk can attract large numbers of people, all individually sponsored or as part of my 'team' to maximise the funds we can raise. Anyone that wants to tag along is more than welcome and as plans develop I will convey them through this blog.

But summer 2013 is a long way off and by creating a JustGiving page now I can allow people to start making donations. Through this blog and other media I can hopefully spread the word and raise some money ahead of the climb up Snowdon and have set myself a large but hopefully attainable overall goal of £10,000. With the sponsorship I hope to gain for the climb I hope I can smash that target and raise much more but let's see how things go.

So the fund raising growth hopefully starts here and will climb steadily to a crescendo when the time of the climb approaches and the event itself takes me to, and hopefully far in excess of my goal.

So my plea to all reading is therefore to please start to spread the word amongst family and friends and urge people that if they are willing to donate to please do so, great or small, for the sake of people like me and my fellow patients. Every penny counts and by using JustGiving as as UK taxpayer the Government has to release Gift Aid from it's claws which means the charity gets a bit more than your donation alone.

So the address if you are able and wish to donate is justgiving.com/dieseldrinkersnowdon.

To make things even easier, you can also donate £5 just by sending a text from your mobile phone. Simply text RTOR66 to 70070.

Please help me make a difference and I thank you from my heart in advance.

Friday, 28 September 2012

I had a day off.

Afternoon everybody.

I decided to have a day off from writing the blog yesterday, largely because I couldn't think of much to write and didn't have a great deal planned for the day anyway. But I'm back now with a quick update which I'm writing from the day unit back at Leicester.

I'm back here today for my the final series of treatments in the first phase of my induction therapy, and as I have to have anti-fungal and chemotherapy treatment today and my final chemo on Sunday I'm being admitted back to the Haematology ward for the weekend. All being well I'll be discharged on Sunday afternoon after my final chemo is administered.

Beyond that I guess at some point next week I'll be having another bone marrow biopsy (hopefully without the bone section) which will give the first indication of what effect the treatment is having. After that the medical team will plan the next phase of my treatment.

I'm hoping that the next phase can be carried out as the end of this has and be done by me visiting the day clinic, even if it has to be every day. Throughout my treatment I've had no adverse reactions to any of the treatments that have been administered to me other than the occasional mild headache and a metallic taste in my mouth. I've felt guilty occupying space in a hospital bed and I'm hoping the hospital can make better use of the beds by me not being there.

I'll take the advice of the medical team as ever and if they insist I will spend my time in hospital, but I'm being sensible about what I do, who I see and where I go whilst I'm at home so am doing my best to avoid picking up an infection.

Things are progressing as far as checking my sisters compatibility for a bone marrow donation is concerned. She had a letter earlier in the week from the hospital (the Vampires as she calls them) requesting a blood test. She's going for the blood test today at her doctors, but wasn't happy about the rather surprising standard arrangement to 'drop the samples in the post' along with everyones birthdays cards and bill payments afterwards. Thankfully my dad has stepped into the breach and is driving her and her blood down to the hospital on Saturday, which will also give me an opportunity to see her, my nieces (Ashleigh and Ellie) and my parents.

Andrea also has visitors this weekend, as her sister in law, Lisa and our niece Charlotte are coming to stay on Saturday night. Charlotte, with her brother Freddie were the masterminds behind 'Operation Yum-Yum' recently whilst I was on the Bone Marrow Unit, with the basket of goodies delivered by Lisa and Paul which were greatly appreciated. Freddie is playing football at the weekend so will miss out on a trip to Northampton.

I managed to snatch a look at Sam's Rugby training last night and was really impressed at the way all of the boys are performing. Some hard tackling, strong running and good technique was on display from all that were there and I think this season looks very promising. I hope I'm able to catch more of it.

Tom has no football this week thanks to an odd number of teams in his league so will have to endure watching his brother play Rugby on Sunday. At least he'll have his cousin Charlotte for company and no doubt the club's tuck shop will benefit from their custom.

I'll be torn between two Rugby games tonight as Leeds Rhinos play Wigan in their bid for a place in the Rugby League Grand Final, and Northampton Saints are out for their fifth win out of five against Wasps. I'll be tracking both games as best I can and best of luck to both teams!

Finally, I think hair loss might be starting. Each morning as I shower I've noticed a higher than normal number of hairs seem to be leaving my head, though at the moment to look at me the loss is not detectable. It's not something I'm worried about anyway and if it's the only side effect I suffer I think I will have got away very lightly.

Many thanks for reading.

Wednesday, 26 September 2012

Sleepless nights.

Morning all,

Here I am back in Leicester but today just as an outpatient. I was up early so made my way to the hospital so that I can hopefully get my treatment over and done with and back home for lunchtime, fingers crossed. So far I've had my blood samples taken and a cannula fitted so they can bring the Ambizone as soon as they like and get cracking as far as I'm concerned.

You would have thought being back at home in my own bed I would be sleeping well and possibly better than I did in hospital, but unfortunately over the past couple of nights that hasn't been the case.

On Monday night I went to bed about 10 and woke at 12.30 and didn't get back to sleep again before Andrea and I got up to check on Max at about 6am.

Last night I was feeling tired and went to bed about 11.30, thinking a late night would help me sleep. Unfortunately I woke up again about 3.30 and laid awake for a couple of hours, managing to drop off again for a while later and finally getting up at 7am.

The strange thing is despite the lack of sleep I don't feel tired though I guess I'll have a snooze this afternoon when I get back home.

Whilst I've been in hospital I've been having a sleeping tablet each night to help me sleep, and it seems to have been working. I've had some good rest whilst I was in the ward. After Monday night I went to the Doctors yesterday and asked for a repeat prescription of the tablets the hospital had been prescribing and awaited the decision. The Doctor called me late in the afternoon and ran through the reservations he had about prescribing the particular type of tablet, largely because I can become dependant on them.

I assured him that rather than taking them every night I will alternate, so hopefully I will get some good nights sleep. Perhaps when things settle back into a routine I'll have less on my mind and less to think about when I wake up, which seems to be the problem. I'm waking up and thinking about all sorts of silly, unnecessary things which distract my mind and stop me going to sleep.

I'll collect the prescription later and maybe try a tablet tonight to see whether it helps.

Following my post about mischievous Max yesterday he was as good as gold last night. Once again he was given the free run of downstairs (we have a stair gate to prevent him coming upstairs) and once again he made himself comfortable on the sofa to sleep curled up on the remaining cushions.

The only peep I heard out of him was just after 5am and when I went downstairs to check on him he'd knocked the cushions off both sofa's and was curled up on two of them on the floor. I put the cushions back in position again and he made himself comfortable, had a tummy tickle and settled down again.

I think we've cured him and the misdemeanour with the cushion yesterday could have been down to his frustration at the cushions falling off the sofa and him not being able to get comfortable, as there was no chewing last night.

As the photo below testifies, he likes being comfortable and cuddled and this was this mornings reward for being a good dog last night.


It looks like things are moving to get my Ambizone started and things are quiet in the clinic here so hopefully I'll be over and done with by lunchtime and on my way home again.

See you all soon and thanks as always for reading.

Tuesday, 25 September 2012

Mans best friend.

Afternoon everybody.

I'm a bit late today as I've had a lazy day at home. Mind you I managed to wash the car this morning though it made me a bit breathless due to my red blood cell count being low at the moment. My white cell count is currently within the normal range so my risk of infection is low, which is why I guess they let me come home.

Today I'll tell you more about the member of the family that has had a couple of mentions already, our Labrador Max. I promised to detail his slow cooker/chili escapade that he got up to the other night and forgot all about it, so today I'll spill the beans.

But first a quick update on the plan for my treatment over the next few days.

As promised I was allowed to come home yesterday and despite trying to disguise a trip to the hospital as a surprise treat for me from Andrea and the boys, Tom saw straight though the plan and worked out immediately that I was coming home again. He's a smart cookie that kid!

So after a couple of treatments in the afternoon which had me on the drip for the best part of three and a half hours, the boys and Andrea arrived towards the end and after polishing off my tea I was free to leave. We got home just after 8 o'clock last night and were greeted by one very excited dog.

I have three days remaining to complete the first phase of the treatment and have to attend the hospital on Wednesday, Friday and Sunday to get the last doses of the anti-fungal and chemotherapy treatments. Wednesday will be done on the day clinic as an outpatient so I can drive myself to Leicester and back for the day. But because the day clinic is closed over the weekend it means that when I report on Friday I'll be admitted to the ward for the weekend to receive my treatment on Sunday. This does mean I'll be in hospital again over the weekend but all being well I should be able to come home again on Sunday evening.

After that I'll be due another Bone Marrow biopsy to see how the treatment is working and dependant on that the timing of the next phase of treatment (which is a repeat of that I've just had) will be decided. Hopefully I'll get a short break to allow me to celebrate my birthday at home on the 10th October.

Anyway, back to the subject of todays blog, man's best friend - in my case Max.

Max is our yellow Labrador and he's about 17 months old now. He's a stunning looking dog as the photo below on his first birthday shows, and he comes from a breeder with true champion credentials, having had several dog show champions (including the famous Crufts). Max's own father was best of breed a couple of years ago and still continues to win shows.


It is said that dogs have a sixth sense and can detect when something is not right. Max's behaviour since my illness started and certainly since I've been in hospital seems to back this up and my absence has left him very unsettled as my blog has often mentioned.

I guess at 17 months old, he's the equivalent in  dog years of a grumpy teenager, but thankfully he's getting over his mischievous child stage. In his younger days he's been quite destructive. The house and some of the furniture carries the battle scars from his exploits. At one time he had a taste for the plaster on the walls and we've had patches of wall chewed out in the living room, hallway and kitchen. He's eaten dishcloths and tea towels and Andrea's silicone oven glove has also been destroyed. One of the kitchen cupboards has also had the Max treatment and the kitchen chairs (legs and seats) and the kitchen table legs have also had a good chew as you can see below.


Normally on a night Max gets the run of the hallway and the kitchen and mooches about overnight between his bed which we used to put in the hallway and his carpeted crate. But during his unsettled period whilst I've been in hospital he's had some restless nights and has destroyed his bed and chewed big holes in his carpet.

Last night we thought we'd show him some trust and extended his free area to the living room. Making sure that everything that might be a temptation to chew was out of harms reach we left him overnight to make himself comfortable on the sofas, which he duly did. I woke up about 12.30 and came downstairs to check up on him and found him curled up on one of the sofas as happy as Larry.

I didn't get back to sleep all night for thinking about silly things (must take a sleeping tablet tonight!) and so Andrea and me were up at 6am to see what Max had been up to. He'd had a minor misdemeanour and had chewed one of the older cushions, so the inner lining was ripped open and some stuffing was one the floor. Hopefully he discovered it wasn't to his taste and won't bother again. But the upshot is that I think we've found the way for him to be settled overnight which might just ease the burden on poor Andrea having to get up to him at all hours as he destroys his carpet.

But that's not before he destroyed the slow cooker whilst Bernoie was here last week. Andrea had made a chilli one night last week in the slow cooker and when dinner was finished there was a little bit left. So the slow cooker got pushed to the very back of the kitchen worktop and theoretically out of harms reach overnight. But that wasn't banking on Max's size and apparent reach as part way through the night the smell of chili must have been too much and somehow he managed to reach the slow cooker and pull it down to the floor.

It must have fallen with a real clatter but remarkeably nobody woke up at the sound, so in the morning Andrea came down to the kitchen to discover the glass lid smashed in pieces, the inner bowl licked clean and the outer casing kicking around the floor. So the dog had a chili midnight snack and we no longer have a slow cooker.

But other than his little misheivous acts, which will hopefully stop now I'm home, he's the truest faithful friend that a dog can be and an integral part of the family. As I write he's laid on the sofa alongside me chewing his bone as comfortable as can be.

Thanks as always for reading.

Monday, 24 September 2012

I'm going home again!

Great news this morning folks.

The docs have been round again this morning and as I'm generally fit and well, and my cell counts are around those of a 'normal' person, I'm being let out for good behaviour again and going home. I just need to come back as an outpatient for a couple of days this week to have my anti-fungal treatments on Wednesday and Friday, and my last chemo treatments which are due on Friday and Sunday. I guess the one on Sunday might roll over to Monday as the day clinic won't be open on Sunday.

So this morning is a good day, and it's made all the better by seeing my buddy in the bed next door sitting up in bed and looking much better than he has over the past few days. The break from his chemo treatment and the administration of drugs via IV rather than tablets seems to be giving him the break he needs to get his strength back up and carry on his fight.

We've been chatting this morning and he seems much brighter, and I've told him he must not give up the fight. I hope he heeds my advice which I'll keep giving through this blog, as I've given him the address. Keep strong matey and beat it!

So once again I'll keep things short.

Phil Bamber, my regular Monday visitor is hopefully due shortly, but I'm not going to punish him by making him wait all day to take me home again. I've spoken to Andrea and under the pretence of a surprise visit to see me with the boys after school this evening, she's coming to pick me up to take me home.

So tomorrow sblog will once again be from the comfort of my own home which I'm really looking forward to.

Thanks again for reading.

Sunday, 23 September 2012

The Saints flag worked!

Morning all.

Despite the reflective film on the window, the Saints flag remained in position (at least until my Tigers following visitors had seen it being unveiled on their arrival which was fun) and it must have jinxed the Tigers around the corner as they lost to Harlequins. Thanks to my poorly mate in the next bed having ESPN on his ipad me and one of the other guys were able to watch the game (when the picture wasn't frozen) so we were able to keep up with the score. It's amazing how much delay there is between what is actually happening live and seeing the pictures. I reckon there must have been two minutes at least and my phone was updating quicker than the TV.

So my lucky Saints flag courtesy of Scott will be locked away safely and brought out every time we play the Tigers from now on!

I had a really good nights sleep last night as did my mate next door. They're giving him a temporary break from his chemo and having chatted with him just now he's feeling better today. He had a really rough day yesterday and I felt his pain through the curtain. I hope he gets rid of the infection he has and can get back on the chemo he needs to cure him. My thoughts are constantly with him and I feel embarrassingly healthy in comparison.

Bernie is making her way home today with my Uncle Andy after he's been to watch Tom play football and they're planning on calling in on their way back to Lytham, so I have visitors again today.

Andy came down to Northampton yesterday and took the boys to the Northampton Town football game. Tom will have loved that but I suspect Sam would rather have been down the road at Franklins Gardens. Either way they will both have had a great afternoon so my thanks to Andy, I really appreciate it.

Sam hasn't been left out either and his Granny and Grandad have been to see him at rugby training this morning so both boys have had some family spectators at their respective sports today in my absence.

Other than that, on the treatment front I have a dose of Rituximab (the antibody treatment) due later  today which hasn't had any negative effect on me yet. Then all I have left is one more day of steroids, another dose of chemo on Friday and more Rituximab next Sunday to complete this phase of treatment. I can't believe how quickly it's gone.

A bone marrow biopsy at the end of this phase will indicate how I'm responding to treatment so fingers crossed the drugs are having the desired effect inside me before I move onto the next phase which is effectively a repeat of this one.

As always, thanks for reading.

Saturday, 22 September 2012

If ever inspiration was needed this is it.

Morning all,

This will be a quick post this morning as I have a day full of visitors. Andrea and the boys are due shortly and my parents are coming in the early afternoon. Then later this afternoon a couple of the great people I referred to in my post about working relationships are calling in on their way to the Leicester Tigers game round the corner.

But this morning the words will flow easily following a chat with the guy in the next bed to me last night. It has made me feel more inspired than ever to get on and ensure my goal of climbing Snowdon and raise as much money as is humanly possible to be spent on research into finding new treatments and hopefully cures for the conditions he, me and the others are suffering from.

We were laid watching Sky Sports on our respective ipad and laptops and got talking about sport initially. I was watching the Leeds Rhinos game and he was flicking between that and a football game. Once we got chatting though I was transfixed with it and lost track of the game for a spell.

I won't mention his name for the sake of privacy but he's only a couple of years older than me and like me he is involved in construction working on large projects. He has a form of Lymphoma that is even rarer than my Leukaemia, and I think he said there are only 4 cases a year compared to my 200.

He's been receiving treatment for about 3 months and has gone through radiotherapy and almost continuous chemotherapy which has really taken itself out on his body and left him very poorly. It's not helped that he's also picked up an internal infection and his only sustenance is the drips that he's on continuously. He can't keep any food or fluids down and is generally having a very miserable time of it at the moment. He's having a really tough time, poor bugger, and my heart goes out to him and his wife who's here regularly.

What really got me was when he told me that the stage of treatment he is at is effectively the last chance saloon and that despite his chances having increased from 30% survival, they were still no better than 50/50. I got an email from my sister later asking how I was and when I mentioned my bed door neighbour in my reply I had to wipe away the tears so that I could see the screen.

He's a really decent bloke and it just goes to show that these kinds of diseases are so random and indiscriminate. I wouldn't wish anything like this on anyone but why do they always seem to hit the nicest people. I truly hope he makes it through this and have wished him all the best and hope he gets through this successfully. It's taken my mind off my own illness which I still feel I have been unbelievably lucky that I have so far been unaffected by anything that has been done to me.

I'm off any treatment now until Monday I think, other than the steroids so have a couple of days rest.

I've just discovered that my plan to wind up the Leicester Tigers fans has been thwarted by the fact that there is a solar film on the windows which is mirrored on the outside. Just my luck that all we could see when me and the boys went out to the car park to check is mirrored glass! Not to worry, we've turned the flag round and as the photo below shows it just about fills the window inside. I'll leave it up and unveil it when Paul and Tracy arrive this afternoon before the Tigers game.


That's it for today I think so I'll sign off and see you all tomorrow.

Thanks again for reading.

Friday, 21 September 2012

An interesting night.

Morning all,

I'm settling into life as a patient in a multi-bed bay today.

Last night wasn't too bad after all. The snoring, farting and belching wasn't too loud and the other three patients were fairly quiet too! (Hehe)

My main gripe this morning was some of the nursing staff during the night. The bay I'm in sits opposite the nurses station and having got to sleep for a couple of hours I woke at about 1am to hear them sitting nattering not particularly quietly about nothing.

Then after a few minutes I heard a broad Scottish male accent and apparently a patient not belonging to this ward had wandered up the corridor dazed and confused. It sounded like he'd had a fall and when Security emerged a few minutes later it transpired he'd wandered from Accident Emergency, which is the opposite end of the hospital about half a mile away in an entirely different building! So much for hospital security.

Needless to say it gave the nurses something more to talk about and they regaled each other with tales of similar occurrences they'd encountered. I was just starting to get pissed off to the state of going to say something when things finally quietened down and I got back to sleep.

I think I woke up once again for a short time before the obs round came in about 7.15.

So it was a slightly unsettled and shall we say an eventful night but manageable in the end and perhaps not as bad as I had anticipated. The only other stay I've had in hospital in my life was when my son Tom had a major fall when he was about 2 years old. I spent each night in a guest bed at the side of his bed in a 4 bed bay in the children's ward and by comparison last night was easy so I'm counting my blessings.

Johannes, the registrar called to see me this morning and indicated that because of my condition, the situation of me mixing with other patients is not ideal and if they get an opportunity I'll be moved to a side room or even back to the Bone Marrow Unit. I'm not too bothered from a personal perspective now, but if it gives me a better chance of avoiding any problems then it's all good.

Whatever happens I hope they don't move me before tomorrow evening as sitting in my bed or chair I can see directly into the Leicester Tigers ground and have a view of a portion of the pitch, including the goal posts at the opposite end. They're at home to Harlequins tomorrow afternoon and I'll be flying the Northampton Saints flag in the window to show my own allegiance. Sam will be in his element when he comes to see me tomorrow.

Treatment wise I've had no real effect from the lumbar puncture yesterday other than a mild head ache, which is not surprising considering I've had chemotherapy drugs injected straight into my central nervous system. I've had a couple of paracetamol last night and again this morning and the pain is under control.

My regular chemo is due later today and a nurse has just been to see what my veins look like and succesfully installed a new cannula. The left hand has been attacked today as the right is a little bit sore and a couple of days rest will hopefully help.

My Aunt Bernadette (Bernie) arrived in Northampton last night to stay with Andrea and the boys for a couple of days. By now they are no doubt knee deep in craft activities as they are both serious crafting freaks, so it's probably just as well I'm not at home.

Tonights phone call to Andrea should be interesting. Her text this morning indicated that the dog had been up to mischief last night so I dread to think what he's been up to. The only indication I have was that it involved the slow cooker and a chilli con carne! I'll expand tomorrow when I know more.

All the best everybody and as always thanks for reading.

Thursday, 20 September 2012

The Holiday's over.

Evening all,

The holiday is well and truly over and as promised I'm back in hospital. Not in my luxury apartment in the Bone Marrow Unit either unfortunately and I now need to share a 4 bed bay with 3 other blokes! Given that I'm supposed to be at risk of infection and had been kept in isolation previously, then having been so careful whilst I've been at home I have to question in my mind whether this is putting me at risk? I think things over the coming days are gonna be tougher so I'm glad as always I have plenty to do.

One plus is that I can now see the Leicester Tigers ground from my window (but unfortunately not the pitch), so my plan of deploying my Northampton Saints flag in the window to wind up the natives may well get executed in the morning. It certainly will on match days and as they are at home to Harlequins on Saturday afternoon the plan will be executed no later than Saturday morning!

It's been another very long day, hence the lateness of this blog.

With the boys dropped off with our next door neighbour first thing this morning we made good time to Leicester and were at the reception early by 8.15. A wait ensued and I was finally taken to a bed in the Haematology day unit an hour later. News on when treatment was due to start was thin on the ground but I did manage to establish that I was going to be admitted after the lumbar puncture, so as nothing had started by 11am, Andrea made her way home and a text at 11.45 confirmed she'd got home safely.

I was finally taken to the treatment room about 12.30 and the treatment began after going through all the formalities of briefing and consent forms and was over by 1pm. In actual fact the treatment was straightforward and nothing in comparison to the two Bone Marrow Biopsies I've had. A fine needle was inserted between two vertebrae in my lower back (after a local anaesthetic) and after drawing off some of the spinal fluids a dose of chemotherapy was injected through the same needle.

The only drawback from the treatment was that for the next 2 hours I had to lay still on my back which, by the time the treatment was over, meant 3 o'clock.

All of this took place in the day unit which meant that with the exception of those of us having the lumbar punctures who had beds, loads of outpatients were in and out in the chairs around me all day coming for various treatments. I got talking to some of them and found they had a variety of conditions, primarily Lymphoma.

By the end of the day there was only me and a young guy left and we were both waiting to be admitted to the Haematology Ward. We got talking and I found that he has exactly the same condition as me and is on his third course of chemotherapy. He's only 20 years old which backs up the fact that this condition is a young persons, even childhood condition. From speaking to him it sounds like he's been through some rough patches during his treatment, even when he went through the stage I'm at, and one of the drugs I've been OK with reacted against him. Once again I get the impression my experience so far has been relatively trouble free and hope it continues that way.

Tonight could be interesting and a new experience having to share a bay with others. Hopefully I will sleep well and there'll be no drama's overnight but I think a sleeping tablet will definitely be required.

I'll report how it went in the morning.

Thanks again for reading.

Wednesday, 19 September 2012

Only a quickie today!

Afternoon all.

I can't believe it's almost the end of my second day at home and I'm back in hospital first thing in the morning. The time has flown as it had in hospital but it's been worthwhile and great to have been back in the comfort of my family and own home for a brief respite.

Today has been a fairly lazy day with the boys at school and Andrea at work, so most of the days it's just been me and the dog mooching around the house and watching TV. I've probably got less done than whilst I was in hospital.

I did have a brief trip out earlier though and after a quick chat with somebody special about my idea for the Snowdon charity climb, I went and bought a mini ipod speaker dock as the headphone socket on my ipod is knackered. At least when I go back to hospital now I'll be able to listen to a broader selection of music.

My thoughts about the Snowdon climb are gathering momentum in my mind and I have a few whacky ideas to explore which can be done whilst I'm back in hospital. I'm determined to do something and I want to make it really special and above all really productive in terms of fund raising.

I'm due back at the hospital for 8.30 in the morning so the boys are going to have to be up early and thanks to the kindness of our next door neighbour Margaret they have somewhere to go until it's time for them to go to school whilst Andrea and me head back to Leicester.

Tomorrow is the lumbar puncture, which is the injection of chemotherapy drugs direct into my spinal fluid to make sure that my central nervous system is clear. When they're fiddling with a needle around your spine it's something else I face with more than a little trepidation, but as with everything else it has to be done and who am I to refuse?

As far as other treatments go it could be a busy day tomorrow. Had I remained in hospital I would have had the anti-fungal treatment that I had on Monday today. I might end up with that tomorrow now unless they increase the dose I'm due on Friday. I'm also due to be back on the steroids from tomorrow and some of the normal chemotherapy drugs are due according to my treatment plan.

At the moment I'm not sure whether I'll be in the Haematology Ward or back in the Bone Marrow Transplant Unit and I guess it's dependant on the availability of beds. It doesn't matter to me, though I have got to know the Bone Marrow Transplant staff quite well now.

So my bags are packed, (more advisedly this time since I now know what I do and don't need in hospital) and I'm ready to go back in the morning. Once again I'll miss Andrea and the boys but I can go back in the hope that I might be able to escape for a short break again.

Thanks as always for reading.

Tuesday, 18 September 2012

Today is a good day!

Morning all,

I can't begin to tell you all how good it feels to be sat writing today's blog from the comfort of my own sofa in the comfort of my own home. But it's bloody good!

Yesterdays elation at being let home for good behaviour turned out to be a long drawn out affair and I'll tell more of that in due course, but not long after I announced me temporary reprieve from hospital in various forms came another surprise.

I got a phone call from my sister-in-law Lisa, letting me know that she and Andrea's brother Paul were on a secret mercy mission from Leeds called 'Operation Yum Yum' and that as she spoke they were on the M1 dashing to Leicester with a basket full of goodies from my nephew Freddie and niece Charlotte.

The announcement of my departure from hospital had just been broadcast and had unmasked their secret plans as they had to check I'd still be at the hospital for them to complete their mission. As it turns out they had nothing to fear and they arrived in ample time.

It was great to see familiar faces and the basket of goodies they brandished as they walked through the door will be very much appreciated and as the photo below shows brought a smile to my face.

 
We chatted for a good while and had a great laugh between us. Lisa is a very experienced nurse and understands better than most some of the issues I'm facing. We'd been up to Andrea's parents the weekend I really started feeling that things were not right and called at Paul and Lisa's the following morning so that Max could go for a walk with their dog, Echo. I wasn't feeling too well so stayed and had a coffee with Paul whilst the girls and kids all went for a walk. Lisa confessed to me yesterday that as we left that morning she said to Paul, 'he doesn't look well'. That must be a nursing intuition!
 
Well the mercy mission complete they departed in time to go and collect Charlotte and Freddie from school back in Leeds.
 
Not long after my next guest arrived, who had already planned on coming for an hour or so but in the end got press-ganged into waiting the day to give me a lift home. To Phil Bamber I will be eternally grateful for his company yesterday afternoon as we waited for the various bits of the jigsaw to fall into place that would finally let us leave.
 
Then yet another guest arrived in the form of Scott Pagano, one of my rugby buddies. He came bearing gifts too in the form of a Northampton Saints flag, which I will deploy to wind up the natives when I return to Leicester, and a Saints Rubik's cube, which should keep me occupied during the long hours in hospital.
 
Last weekend Scott and one of his sons climbed mount Snowdon and as we talked about it and looked through the photos he had, I became inspired to perhaps do the same when all of this is over to hopefully mark the end of my journey and the conclusion of my own metaphorical climbing of a mountain. In so doing it must give a great opportunity for some fund raising to be done and give something back to the people who make the treatment and hopefully cure of patients with Leukaemia possible. My current thoughts are to raise funds for the Leukaemia and Lymphoma Research charity as it is dedicated to blood cancers of the type I have.
 
Since then my mind has been working overtime and a plan is hatching which I think could be well worthwhile and could potentially raise money that could be put to good use. Through Sam's rugby I have a fleeting association in the main with Towcestrians Rugby Club, as does Scott. I think there might be an opportunity to get a substantial group together made up of parents, coaches and kids to do a 'Dieseldrinkers Road To Recovery - Tour To The Top' sponsored walk up Snowdon or something similar when I'm over this and my fitness returns - perhaps mid next year.
 
Not being one to do anything by halves my mind is also working on ways of making this a really special event to maximise the amount of money I could raise and I have a totally off the wall idea that I'm hoping to explore, again with a rugby flavour, but I'll say no more about that until I've made some enquiries.


Back to the escape plan.

Scott left after an hour or so, leaving Phil and me to wait for the cogs to whirr. I had to have a final anti-fungal (makes me sound like a fish doesn't it) treatment which left me on an IV pump for an hour and half, so we sat and watched daytime TV. Has anyone ever seen Man vs Food??

With the treatment finished the next obstacle was getting my pharmacy delivery sorted ready to go home which seemed to take an eternity. In my frustration I made a few trips to the kitchen and back to try and highlight the fact that I was till there! My dinner came and was consumed and still we waited.

On one of my journeys to the kitchen though I did catch sight of one of the nurses in tears and being comforted by one of the other nurses. I've mentioned before that one of the other patients (there are only 5 of us on that ward) has clearly been having a hard time and I think yesterday things may have taken a turn for the worse. I hope I'm wrong. With that in mind I elected not to make a nuisance of myself and waited my turn.

My pharmacy finally arrived about 7pm and the cannula was at last removed from my hand and after a briefing about my return on Thursday and precautions whilst at home I was finally free to leave.

Andrea had managed to keep my arrival home a secret from the boys so it came as a total surprise when we arrived home about 8.30pm. I rang the doorbell and stood with my back to the door in the dark as they opened it. As I turned they both leapt into my arms and tears were shed all round. It was all very emotional but so bloody good to be home.

It felt great to sleep in my own bed for a change, even though it was short lived as the dog was up and whining at 4.30am. I elected to let Andrea stay in bed as she's had to put up with him doing the same for the past 2 weeks so I went and laid on the sofa in the living room and Max went to sleep again.

We've walked the boys to school this morning which helped me realise how little walking I've done over the past couple of weeks and I actually found it quite tiring. Andrea has just got back from walking Max with her friend Wendy and we're having a coffee.

The next job is a trip to Boots to get a decent thermometer and blood pressure monitor as I need to keep an eye on things myself in the absence of the nurses observations. Any issues and I'll be straight back in hospital!

So for now I'm very happy. I never expected to be able to come home at all during this first 28 day induction phase and I hope it's a sign that things are headed along the right path and that my body is reacting as it should. I'm not taking anything for granted though and perhaps the goings on down the ward corridor yesterday are a sharp reminder of how serious this could all become.

Finally, I have to say thanks to Paul and Lisa for their mercy mission, to Phil for his unstinting patience yesterday (and the lift home), and to Scott for his inspiration to get my arse in gear at the end of this and do something worthwhile.

Thanks again for reading.

Monday, 17 September 2012

Really good news folks!

Morning all,

I'd prepared myself for a long blog today in the absence of any treatment and was going to give you the next instalment of the Coiners story, but as things have turned out this is going to be very brief, for a VERY good reason.

A little earlier I was lathered up with shaving foam tidying up my beard growth when the consultant popped in for an update chat and some very good news. She told me that my white cell count has improved to a state where my risk of infection has consequently reduced. The other parts of my blood are looking healthy too. This was the first part of my good news.

The best bit was that because they are happy with my progress and the fact that I'm fit and generally well, I'm being allowed to go home for a couple of days. I'm absolutely ecstatic about that and a quick call to Andrea after the consultant had gone was the best phone call I could be making right now.

So my bags are packed, and after a surprise visit from Andrea's brother and my sister in law to deliver a basket of goodies from my nephew Freddie and niece Charlotte, I'm finishing my daily blog off ready to go home later this afternoon with Phil who was also calling to visit today anyway.

I know I have to be sensible whilst I'm at home as I am still at risk, so no work, housework, diy and be sensible about where I go and what I eat. But it will be so good to be back at home for a few days with Andrea and the boys.

I have to report back here on Thursday morning for the next round of chemo treatment and a lumbar puncture which I'm slightly nervous about. In effect this is a needle into the spinal sack a bit like an epidural, which enables the injection of chemo drugs directly into the central nervous system, which is otherwise well protected from the normal method of administering chemo. This ensures that any remnants of anything in my central nervous system which could later come back to affect me are also cleared and gives me the best chance of getting clear.

Don't get me wrong, there is still a very long road ahead and I'm not taking anything for granted by any means, but this is hopefully a good sign that things are headed along the right path and that my determination to fight and beat this monster is justified.

I'll continue the blog until this is over, but tomorrows (all being well) will be from the comfort of my own home.

Thanks as always for reading.

Sunday, 16 September 2012

Yesterday - what a day!

Morning all,

Wow what a marathon yesterday turned out to be. It felt very long!

As you've seen from yesterdays blog I had a fantastic morning with Andrea and the boys, and the transfusion of the first unit of blood started not long before they left.

That all went fine and was complete by probably about 2 o'clock with no adverse reaction.

Before commencing any treatment the nurses check the cannula in my hand which is how they feed everything into me. They do this by injecting some saline solution into the cannula and making sure they have a good flow, with no pain or leaks.

A check of the cannula before the antibody treatment began showed that the one I had was leaking and as they can't afford to get the chemotherapy drugs on the skin or into anything other than directly into a vein, it was decided that I needed another cannula fitting. This was probably about 3.30.

A wait ensued whilst a doctor could be found to do the job. The nurses often do it but one of my fellow patients on the unit is going through a very rough time so they have their work cut out and I'd rather they concentrated on those that need it. The poor soul has had ITU staff and senior consultants in attendance for the last couple of days so sounds in a bad way. It's a reminder that so far I have been lucky and how things can change so I'm keeping my whits about me.

A junior doctor turned up about 4 and promptly began the process to cannulate my left hand to replace the cannula in my right. It helps to alternate hands and give them a rest for a few days as the cannulas normally last 3-4 days depending on use.

Well the poor girl really struggled and she poked and prodded my veins for half an hour without success in drawing blood and I have to say it was bloody uncomfortable at times. I do actually have good veins which are clearly visible and stand out like train tracks when they apply the tourniquet so she had plenty to aim at!

After two false throws she thought she'd had success with her third dart and a small flush of saline appeared to go in OK, if a little slowly.

Thankfully the nurse that came to prepare me for my treatment later did the same and to our alarm my hand started swelling. The junior doctor had clearly missed the spot again and the cannula was injecting into my flesh rather than a vein, which could have been rather nasty!

A call went out for her to come back and try again and I sat waiting for another hour dreading the sight of the same doctor returning. Just before 6pm I was relieved to see the familiar face of Johannes, one of the registrars that has been dealing with me since my admission, at the door carrying the tray full of utensils to do the job.

I told him if the left hand was difficult, to take the old cannula out of my right and go for it there again, which he duly did. Good man, he hit the bulls eye with his first shot and relief was felt all around.

After my Macaroni Cheese supper my treatment finally began about 6.30 and was the same stuff I had last Saturday over the course of 5 hours. Thankfully, because I'd had no reaction last week they were able to increase the rate to virtually maximum from the off, and maxed it out after a short time. It still took till 10pm though and then I had to have another half hour of saline to flush the line through and get all the good stuff inside me.

So I'd spent much of the day laid on my bed and by this time my legs were itchy and irritable. I was glad to get up and about at last and made a few trips to the kitchen to stock up the fridge in my room with goodies and stretch my legs a little.

Thank God for the WiFi service and Sky Go that I was able to watch my beloved Leeds Rhinos progress to the next stage of the Super League play offs and I hope my shouting at the laptop screen enthusiastically didn't disturb the other patients too much.

All I have planned today is the second unit of blood for my transfusion, so I have my afternoon and evenings TV viewing planned. Before then I'll be Skype-ing Andrea and the boys to get a match report from Tom on his second game of football and Sam on his mornings rugby training.

Then I have a few days rest with no more steroids and no more chemo until Thursday so hopefully things will remain as they are. Still feeling fit and strong and my spirits are as good as they've ever been. I'll let the nurses look after those that are more in need than me and I wish my fellow patient all the best in turning things around.

Thanks again for reading.

Saturday, 15 September 2012

A busy day ahead.

Morning all.

I'll keep the blog brief today as yesterdays was a bit of a marathon but well worth writing. I also have a busy day ahead starting first with the bit I'm looking forward to, which is the weekly visit from Andrea and the boys. They've hopefully got things planned to do with me and I'll rope them in to help write a bit for the blog too.

The bit later comes with an element of trepidation. I have another dose of Rituximab which is the drug they took about 5 hours to deliver last week. This week though having had no reaction to it, they can deliver it faster and hopefully shorten to a couple of hours.

But then as my drugs are causing Anaemia I need to have a transfusion of a couple of units of blood this afternoon. I've never had a transfusion before but it's one of those things you have to sign a consent form for having heard all the blurb about the risks. I know and understand that in this day and age the controls and screening that go into the processing of blood will minimise the risk of any problems, but it still has to be at the back of your mind. Despite all of the precautions there are still risks of contracting Hepatitis, HIV, CJD amongst the big ones, together with minor issues of picking up a virus or infection carried in the blood which can make me poorly very quickly in my immuno-suppressed state.

When weighed up though I have to have the treatment and it will restore some of the energy and hopefully colour I have lost. I know they will be monitoring my blood pressure, pulse, sats, and temperature and will be able to tell quickly if there is a problem so I am reassured by that.

Like everything else they've done to me I know it's in my best interest and I will not refuse their advice at any point.

I got another card yesterday from my Great Aunt's daughter, together with an email later from her to correct my relationship to Auntie Kathleen. Strictly speaking as she correctly points out she is my first cousin once removed but being a bit of a mouthful I hope she won't mind me abbreviating it to the Auntie Kathleen I've always know her as.

The boys and Andrea have arrived now so we'll see what the boys have to to say? As the photo below shows the boys are helping me write the blog.



Tom (right) played his first game of football last Sunday for the Grange Park Under 11's and scored two goals from his position on the left wing. Good on him! His first was a close range shot and the second was from just outside the 18 yard box. He also won a penalty with his amateur dramatics which one of his team mates converted and set up another goal by putting a cross into the box which one of his team mates put away in the back of the goal. Well played Tom!

Sam (left) had his second two hour training session of the new Rugby Union season at Towcestrians on Sunday too. They started with some fitness training followed by tackling practice and ended with a match of Rugby League which Sam enjoyed as he's spent the summer playing for the local League club, Northampton Knights. Afterwards he rounded the session off in the bar with a celebratory Lucozade, bag of sweets from the tuck shop and a burger. Takes after his dad!

At school they are in different classes but doing the same subjects, which is Micro-Organisms in Science (appropriate under my circumstances), Ancient Greece in History and have both joined the choir to exercise their 'angelic' voices ready for the Young Voices concert in the Birmingham LG Arena in early December.

My transfusion started whilst they were here but we got plenty of things done together this morning so we had a great morning and it was good to see the boys and Andrea today and have some quality time with them all.

The transfusion of the first unit of blood has finished without incident after 2 1/2 hours and I'm waiting for the Rituximab, which is the antibody chemotherapy drug that took 5 hours to run last week. Having had no reaction before they can run it quicker this time but it will still take about 2 hours. My cannula is leaking slightly and they can't afford to let chemo drugs leak onto the skin so they'll be fitting a new cannula beforehand. Hopefully I can swap hands over again as alternating hands gives them a rest to recover for a couple of days.

I'm not sure whether they're doing the second unit of blood today or whether they'll leave that till tomorrow but I'm feeling more comfortable about the process now that I've had the first. Andrea said the colour was coming back to my cheeks as the first lot went in so hopefully it's working.

So apart from having to spend most of the day hooked up to a drip the day is going well and some of the anxiety has gone away. I'm feeling happy now - must have been some good blood!

Thanks again for reading.

Friday, 14 September 2012

Working relationships

Last night I got a card with a letter inside from my Great Aunt which made me chuckle at her fantastic wit and humour. She's in her early 90's and had a spell in hospital herself recently after a fall. But the Yorkshire Grit that runs through her veins is the same Hartley blood that courses through mine and her letter is a wonderful tonic. If I can write a reply that's legible I'll write back but my handwriting is not a patch on hers. I know her daughter, my Aunt Kathleen, is following my blog so in the meantime I hope she'll pass on my heartfelt thanks on my behalf.

I had my second dose of chemotherapy last night too which again went smoothly, without incident and has so far shown no side effects other than a strange taste in my mouth which is bearable. The steroids which restarted yesterday are so far being taken without a recurrence of the heartburn, which is hopefully a product of me taking the precaution of ensuring I have a good lining of breakfast in my stomach first, with my cereal, fruit, toast and jam interspersed with the steroid tablets.

Mind you, after reminding the Nurse-in-Charge this morning of her promise earlier in the week of a cooked breakfast, it was chased up and sausage, bacon, beans and scrambled egg materialised, so nurse Jayne has gone straight to number 1 in the popularity stakes! Not only that but the dietitian has also been to see me today and I'm now on the list for a cooked breakfast over the weekend and all next week! Result!!

I had an early start this morning and woke up at 4am in one of those silly moods when you lay awake thinking about totally unimportant trivia that spins round in your head and induces a frustrating insomnia. Consequently I tossed and turned for the next 2 1/2 hours until I decided to put some relaxing music on and bide my time till my 7am observations. I don't feel tired though but if necessary might catch a little nap later.

My blood tests today revealed that I'm showing signs of Anaemia, which means this weekend at some point I'll be having a blood transfusion of a couple of units of blood to increase my red cell count and restore my energy carrier. To all those that donate blood out there I applaud you and am living proof that those donations serve a purpose. Fingers crossed the transfusion is as uneventful as the other treatments I've had so far.

I was going to expand further on the Coiners today, but having had a visit from my boss Andrew this morning thought I'd talk a bit about work and the impact it has on our lives. I think Andrew was pleasantly surprised to see that I don't look unwell and I admit I don't feel unwell, but my presence here alone is testament that things are not right inside.

It's always nice to have a break from work but I bet not many of us would choose to have it forced on them the way mine has. I'm firmly in the 'work to live' as opposed to 'live to work' camp but that's not to say I don't enjoy work and only attend begrudgingly.

The fact is that for most of us, work takes up a significant proportion of our waking hours and is therefore a major part of our lives. So there's no pleasure in doing a job you don't like, or working with people you don't get on with. In that regard I can confirm that I enjoy my work and regard the people I work with as much more than mere colleagues.

Many will know that I work for Balfour Beatty Engineering Services as a Project Manager having joined them when they were Haden Young just over 8 years ago. Part of the massive Balfour Beatty group, our part of the business is responsible for mechanical and electrical building services installations in various types of buildings and during those 8 years I have been associated with a couple of fantastic projects.

Not only that but you might think that being part of a huge organisation could make you feel quite anonymous, but chatting to Andrew this morning reminded me how human the working relationships are and the camaraderie that exists, certainly amongst the teams I have been part of. The number of emails I've had from workmates past and present together with the comments in the card from the team at Heathrow that Andrew delivered remind me of those special friendships that I have with my workmates. Whilst I miss the daily banter, the occasional email keeps me, and them, on their toes and still makes me feel part of the team, so please keep them coming!

I joined the company as part of the team that would ultimately build the new Queen Elizabeth Hospital in Birmingham. What a team that was and what a fantastic project to be part of. The new hospital is still the largest single site hospital build in the UK and has some staggering statistics.



It has almost 1000 beds spread over 29 wards, not including the extra couple of hundred we created in the Mental Health buildings we built first to make space for the new hospital. It has 32 operating theatres, 100 critical care beds (the largest unit in Europe), an automated laboratory the size of a football pitch, and accommodates the biggest new investment in imaging equipment in the NHS with 6 MRI scanners, 6 CT scanners, angiography rooms, cardiac catheter labs and many more general x-ray rooms.

The hospital also plays host to the Royal Centre for Defence Medicine and all injured troops returning from conflicts such as Afghanistan are treated at the QE Birmingham. Knowing you have contributed to a facility that enables the treatment of these brave people and puts them on their own road to recovery is perhaps one of the most rewarding aspects of having being involved in the project.

So it was a privilege to be part of the team that built this fantastic facility, but for all of its scale the project team was relatively small and very close knit. The photo below was taken in June 2009 and shows the external facade almost complete. In fact by this time much of the internal fit out was also substantially complete and not long afterwards the first areas were handed to the client for installation of their specialist equipment.

 
Virtually all of the team that co-ordinated and managed the entire build of the hospital is therefore in this photo and to my mind it's not a lot of people at what would have been around its peak. Several people reading this blog will be in this photo and if my memory was better I'd probably be able to put a name to everyone in the picture. And that is because it was a special team, a friendly team, a fantastic team to be part of. Everyone had respect for every other member of the team and the role they had to play. I'm proud to have been part of it.
 
The team was tiny when I started, probably about 20 in number, and I was one of the few to stay right through till almost the end of the project when there was only about a dozen of us wrapping up loose ends in early 2011.
 
But with things largely complete I moved on to other things and became part of another team working on a bid to build a new hospital at Alder Hey Children's Hospital in Liverpool. Again this was a small team and I have to say another very good one. Extremely knowledgeable about the construction, operation and maintenance of hospitals and skilled at listening to and understanding the clients needs. The building and some of the innovative solutions we came up with as a team would, I think, have been fantastic to work on and rewarding to complete.
 
Alas the client selected our competitor based primarily on financial scoring and the loss of the bid was difficult to take. I felt physically sick when the news came in on the Friday and took myself off for a solemn walk round the parkland around our office. It was over a years work down the drain and I know the rest of the team took it every bit as hard and were bitterly disappointed.
 
The following Monday my boss and I consoled ourselves over a coffee and weighed up the options for me. Without any major bid work to get stuck into I have to say I felt things looked bleak. However later in the day an opportunity came up to discuss moving to another of our prestigious projects. After an interview with Andrew that Friday, which also included the client, within another week I joined a new team at Heathrow's new Terminal 2B and have been there until illness struck.
 
 
 
Once again the Team at Heathrow has the same Balfour Beatty qualities running through it's veins and is great to work within. The BBES M&E team in particular led by Andrew, and as part of that the ICS (Information and Communications Systems) team that I subsequently managed are a true bunch of friendly, knowledgeable, professional people and a pleasure to work around.
 
I won't deny that the daily commute from Northampton to Heathrow was punishing and became exhausting after a while, but the prestige of the job and the team around me made the journey worthwhile. It was good to see a familiar face today and I know that the team is more than capable of completing the job to the usual exceptional standard. It's just a shame that my part in it has been temporarily curtailed.
 
The Balfour Beatty business values are Integrity, Teamwork, Excellence and Respect, and whilst the business runs training sessions to drum these into us, I have to say that the people and teams I've worked with over the past 8 years have had all of these in bucket fulls without prompting in a classroom.
 
The construction industry is running through difficult times in the continued recession and Balfour Beatty themselves face some difficult changes as a result. I only hope that as many of the fantastic people I have worked with emerge intact from the changes and that when I return to work I'll be able to work with those people again.
 
Thanks for reading.

Thursday, 13 September 2012

Coiners and 'Royal' Blood

It's Thursday in case you hadn't noticed, and whilst it's just another day for most of you, it brings me my next dose of chemotheraphy and I'm back on the steroids. Hopefully this time will be just as uneventful as the last and there'll be no adverse reaction. My strength is better than ever, I'm maintaining my weight and am feeling fit and determined.

That's the boring stuff out of the way!

I've mentioned my book a couple of times in my blogs so today I thought I'd give you some detail on the subject matter which is my families dubious history and their involvement at the head of a gang of criminals that dominated a portion of Yorkshire some 240 years ago.

In the mid 1760's the area around Halifax was renowned for the woollen and worsted trade and many of the locals supplemented their meagre livings as farmers by weaving cloth which they then sold at Halifax. The cloth was very high quality and the type of stuff used in military uniforms amongst other things. But when the Seven Years War finished in 1763, the demand for the cloth dropped and the industry in the area fell into decline. Families struggled on the reduced income that had previously come from their flourishing industry.

My own family lived in the area at the time. Overlooking the settlement of Mytholmroyd, between Halifax and Hebden Bridge was a farm called Bell House (below). The tenant was William Hartley, my great, great, great, great, great, great grandfather. He had three sons, David, Isaac and William, and a daughter Grace.



The eldest son David, who I am directly descended from, had been apprenticed to an ironworker in Birmingham and returned to his family home around the mid 1760's to continue his trade and help support his own new family. He had 3 children in 1766 (David), 1767 (Mary) and it is through his youngest son Isaac born in 1769 that the line continues to me.

There is evidence that shows that David not only brought his ironworkers skills back to his homeland, and whilst in Birmingham also learned the illegal practices of clipping coins and coining new ones. He quickly found support in the neighbouring farms and slowly a gang of clippers and coiners grew up in the area. In recognition of his stature at the head of the gang, David became known as 'King David' and his brother Isaac, the 'Duke of York' and William, the 'Duke of Edinburgh'.

Hence my reference to Royal blood in my line, albeit it is not genuinely blue!

The process the Hartleys and their gang members used was to clip the edges off a good sized gold coin, file a new edge onto the old coin and return it to circulation. The clippings and filings were collected and enough gold was obtained from about 7 coins to enable the gold to be melted down and a new coin sized blank cast. The Coiners would then use a pair of dies to stamp the impression of a head and tail onto the blank and it too would be returned to circulation for a large profit.

Because Spanish and Portuguese coins were in circulation alongside the English Guinea, and because their geometric shapes were easier to copy, the new coins were usually Portuguese Moidores. This also had the advantage that the Moidore carried a higher face value (27shillings) than Guineas (21 shillings) so the profit was even greater, especially as the Coiners only used about 22 shillings of gold to make the new coin.

So the Coiners gang turned a healthy profit and for some time carried on undisturbed. They gained the support of the locals as anyone who lent the Coiners a good coin for clipping would not only get their coin back, but would also receive a small payment, or a share of the clippings in return. So everybody made a bit of money, not just the Coiners, and it allowed the gang to prosper and grow.

Whilst most ordinary people saw no harm in making a little extra money on the back of the Coiners activities, the process was of course quite illegal and in fact carried the death penalty for Treason. In 1768 and 1769 the prevelance of clipped and counterfeit coins in the area drew the attention of the newspapers which increasingly reported the type of fake coins in circulation.

It also drew the attention in particular of the local Inspector of Excise, William Dighton, who began a pursuit of the Coiners gang that would result in a number of arrests including ultimately King David Hartley. But that final arrest would also have dire consequences for Dighton, more of which I'll describe in another blog.

So the subject of my book is the Yorkshire Coiners, led by my ancestors, and includes research I have carried out over the last 4 years. I have visited the National Archives in Kew, Halifax Archives, Sheffield Archives and Leeds Central Library to locate, review, and transcribe the original documents relating to the whole gang, not just my ancestors. This has enabled me to compile a complete chronology of the Coiners, who eventually numbered over 100. Those pursuing them to justice ultimately included a former prime minister and correspondence I have reviewed showed that the case was discussed at the top levels in government and even involved King George III himself.


The working title of the book is the 'Yorkshire Coiners Chronology' and having proof read it during my stay I hope to complete editing over the coming weeks and explore the possibility of having it published through a friend.

Thanks again for reading.

Steve

Wednesday, 12 September 2012

Daily Routine.

I thought today I'd give you an insight into the daily routine I'm settling into. Then, typical - my daily routine was disrupted, hence I'm a little later posting today.

Not that I minded the disruption one bit today since it entailed a surprise visit by my wife whose face appeared unexpectedly at the door and we spent the morning together. It was fantastic to see her and I think gave some reassurance to each other that we're both coping during these times.

So, the day normally starts about 7 am when I am either already awake or am woken up for my first observations (obs) of the day which are generally repeated every 4 hours or so. The nurse checks my blood pressure, pulse, oxygen saturation and temperature. Most mornings they also take blood samples from me for analysis which enables them to check what the treatment is doing, effects of the drugs, and whether there are any signs of infection or impact on the function of my main organs.

I usually settle down to snooze a little longer till I switch the TV on about 8am and watch breakfast TV before the pharmacy round about 9am with any tablets I need to take in the morning.

Once the tablets come I get up and have breakfast. Cooked breakfasts were mentioned but so far I haven't managed to blag one, so I'm making do with cereal and fruit followed by some toast and jam. The one thing I'd say at the moment is that my appetite is still good but I'm conscious that as things progress it may drop off so I'm trying to keep eating whilst I can. My weight usually gets checked daily and is also remaining fairly constant at around 99Kg (infact this morning I broke the 100Kg barrier - but I'd just had my breakfast!).

After breakfast I switch on the laptop and usually have a few emails to respond to from family, friends and colleagues. I've set up a separate folder for the loads of emails I've had and will keep every one.

Time to freshen up then and have a shower, which can be difficult at times due to the need to keep the cannula they use to adminster my drugs through dry. But I'm getting freaky about cleanliness and hygeine and it feels to good to have a thorough clean and put on some clean clothes. Most of the time I'm just wearing shorts and a t-shirt which is comfortable and practical. If you were picturing me in a surgical gown with my rear exposed I'm sorry to disappoint you!

So the rest of the morning is usually the time I settle down to do the days blog which takes me up to or over lunchtime depending on how verbose I'm feeling. The TV is usually on throughout but it's times like this that you realise how poor daytime TV is. Thank god for re-runs of Top Gear and some of the history programmes that I enjoy.

The morning usually includes at some point a visit from one of the consultants or registrars to see how I'm doing. They have access to my blood tests so I guess get a lot of information from that but they need to check that I feel OK in myself as any strange feelings, aches or pains need to be investigated. So far the indications are that I'm responding as expected and they are happy with my progress.

Usually around lunchtime I get to choose from the next days menu for lunch and tea and I have to say I have no complaints at the food I've had whilst I've been here. There is always a choice with something I like and when the meals come they are tasty and in good portions. I'm probably overdoing it a bit but what the hell.

The afternoon is normally a combination of reading a book or magazine, watching TV if there's anything decent on, or having a sneaky snooze. Usually the afternoon passes quickly and before you know it my tea arrives around 5.30, usually with another selection of tablets to take.

By the time I've finished my tea, cleared my pots to the kitchen and had a coffee to finish off it's time to call my wife and the boys to catch up on things at home. The boys are chattier than I've ever known them and it's good to speak to them each day and to know they and my wife are OK.

Then as most other people do I settle down for the evenings TV viewing again until my sleeping tablet comes about 10 and I get changed ready for bed, usually turning in about 10.30 - 11. I've been sleeping really well, especially since my wife brought me some nice thick pillows last weekend and I guess the sleeping tablets help.

I half expected to get bored when they told me I'd be spending weeks in hospital but I'm pleased to say it hasn't been the case. I still have loads of books to read, my own book to complete and my website to update, so I doubt I'll run out of things to do any time soon.

As far as treatment is concerned I've had a couple of days off the steroids, which has been good as they were starting to give me quite a painful heartburn. Thats gone thankfully and I'm feeling good ahead of my next dose of chemotheraphy and the re-start of the steroids which happens tomorrow.

Thanks again for reading.

Steve.

Tuesday, 11 September 2012

Hair Loss.

It's the thing most people associate with Cancer and Chemotheraphy and apparently it's inevitable.

Now I'm not a vain person. My fashion sense is non existent and as far as hair styles are concerned I prefer something practical, having had a clippered haircut for many years which does me fine.

So hairloss is not something that I expect to bother me and will probably just deal with it in the same spirit I'm tackling the rest of this. A baseball cap or woolly hat to keep my head warm should suffice.

But I thought I'd experiment a little and see where hair loss starts and to what extent.

I've had a moustache for probably the best part of 24 years and it's possibly what most people recognise me for. With the exception of a couple of times when I've been adventurous enough to shave it off to remind myself what my top lip looks like it's been a permanent fixture. In fact my wife insists on me keeping it as she thinks I have an ugly top lip!

Otherwise being fair haired I can get away with shaving every couple of days as the stubble isn't so noticeable when it comes back. I'll admit to leaving shaving a little longer between recently which has been due to working on a construction site environment where I did notice there was a prevelance of designer stubble, so generally have been shaving once a week.

But as part of my experiment I've decided to stop shaving completely and see what happens. The old razor blades can graze the skin anyway and any cuts and grazes just give another route into my body for infection so I thought why run the risk. That's my excuse and I'm sticking to it!

So I took a quick shot of me this morning as a reference of how I look now and show this below.


As far as I can tell no hair loss has started yet, though there have been a couple of loose hairs on my pillow this morning. That's probably not unusual anyway and I put it down to old age.

So on with the experiment.

As far as the treatment is concerned I have a couple of rest days now. I've been on steroids since the start but get a break from them till Thursday. That's good as they have a tendancy to give you a bit of acid which has been painful over the past couple of days. They're giving me something to counteract it and I have plenty of Gaviscon and the pain is much less today so hopefully we can avoid it coming back. My next dose of chemotherapy is on Thursday so until then I'm going to make the most of not being on a drip or taking loads of tablets.

See you all soon and thanks for reading.

Steve

Monday, 10 September 2012

Diesel who??

Hi everyone. I have a couple of good mates visting today so looking forward to a bit of company. Not that I'm bored anyway as the mornings are full of catching up with the bundles of emails and messages from the fantastic well wishers out there and I seem to keep well occupied.

So today I thought I'd clear up any concerns over the 'Dieseldrinker' and its origins. It's not something sinister and I'm not a closet consumer of syphoned fuel!

I've always had a love of off road motorsport and I guess I always preferred muddy vehicles, so watching rallying took precedence over F1 and motorcross over tarmac circuit racing. My interest in off road vehicles also extended to the 4x4 variety, and I've always been a fan of Land Rover.

My first car when I turned 17 was in fact a Land Rover Series 2a, built the same year as me (1966) which I co-owned with my mum. It was an experience learing to drive in that with a crash gearbox and first and second gears and very heavy steering. But being an offroader I was able to get in some individual practice on a private estate whilst my dad went rough shooting, leaving me to drive alone around the tracks left from the old army camp that had been there during the war.

The extra practice I got in stood me in good stead and I passed my driving test first time in a conventional car thanks to the local driving school.

For a cheap vehicle at the time it was great fun and despite being petrol powered and not that economical I can distinctly remember filling it up once a week with five quids worth of petrol (at a pump where somebody actually served you) and it would last almost a full week. Oh if only that were the case these days.

A series of 'normal' cars succeeded my beloved Land Rover and it wasn't until later in life that the 4x4 bug was in my system again.

As a consequence of redundancy from a job about 8 years ago I managed to secure for what turned out to be a very short time, a contract position in London which meant a daily commute by train from Northampton. In effect then I just needed a cheap runabout, that was cheap to insure and ideally that I could maintain myself and possibly tinker with on a weekend.

I turned to the trusty Green Oval again and bought myself a 1986 Land Rover 90 in Battleship Grey with a sluggish 2.5 litre naturally aspirated (non-turbo) engine!

It was a bit tatty but was good enough for me and gave me a project as well as a runabout. When I secured the job I now have only a couple of weeks later which came with the benefit of a company car and fuel card, the Land Rover was still kept as a toy and provided many weekends of tinkering, tarting up, and days of green laning with the boys sat in the back in their forward facing seats. I eventually gave the Landy a home respray which I was immensely proud of and at the end I was so sad to see it sold which was just after the photo below was taken.


But to help with any queries I had whilst I was tinkering I joined some of the online forums, most notably 'Difflock.com' where I became a regular poster. So in doing so I had to come up with a 'handle' and as the old Landy was a bit on the thirsty side and ran on diesel, my handle became 'Dieseldrinker', which has stuck ever since.

So there you have it, mystery solved - the origins of Dieseldrinker!

I'm still a Landy nut inside though and my ambition when my health is up to it and funds will allow is a new project. I fancy either restoring a Series 1, or creating a modern take on the Lightweight, with an LPG converted V8, fancy paint job, disk brake conversion, truck cab, etc, etc. My Mrs is probably reading this anyway so I won't go into the full details for the sake of her shattering my dreams!

Quick update on the treatment. Yesterday was quiet with nothing out of the ordinary and I've had an IV dose of Ambisone today for an hour which is some sort of anti-fungal drug. Other than that my mate Phil has been and we've put the world to rights so I have an afternoons TV viewing planned before the onslaught of my other mate Billy tonight.

All the best everyone and thanks for reading.

Sunday, 9 September 2012

The first week is almost up.

Firstly I'm going to start with an apology. I normally pride myself on my English skills so grammar and spelling are normally a strong point with me. However the spelling and grammar in my initial post was not up to my normal standards. I guess we get complacent with spell checkers on phones and in word processing software so I'll have to take more care in future proof reading before I post.

So last time I gave you the tale of how I ended up in Leicester, so having been here almost a week now I thought before my afternoons TV viewing that I have planned commences with the classic 'Italian Job' I'd bring you up to speed with whats happened in the first week.

As I said last time I reported to Leicester for 10am on Monday and after a lengthy day which involved the second bone marrow biopsy I was finally admitted to the Haematology ward by about mid afternoon. My wife made the solitary journey home and put my mind at rest after a short time to let me know that she'd got home safely.

I was put into a side room on the Haematology ward which I didn't mind. I like my privacy at times and being around other patients wasn't necessarily something I was too bothered about. There was talk of moving me to an open bay with other patients but in the end this never materialised.

The remainder of Monday was pretty uneventful as was Tuesday. I spoke to my wife and the boys each day and to my relief they seemed to be bearing up. I'm glad they're strong and hope that seeing me strong and in good spirits helps them through this with me. Not a moment goes by that I don't think about them though and I long to be over this and back with them properly.

My parents, sister and daughter have been in regular contact by phone and text, as have many other members of the family and friends so I don't have time to get bored and spend more time emailing, facebooking and so the days pass remarkeably quickly.

On Wednesday I was given an IV drip of a drug called Daunorubicin which is used in combination with the chemotheraphy drugs to inhibit growth of the cancer cells. This all went ok with no effects.

Later that afternoon I was told that I'd be moving to the Bone Marrow Transplant Unit for a more specialised environment and after a quick jaunt for a chest x-ray I walked with a couple of nurses and my bags the short distance to the BMTU where I now reside.

No complaints about the room which is large and functional and with a widescreen TV, broadband access and a view over the rooftops, I'm happy here. Just down the corridor there's a help yourself snack kitchen that I frequent regularly whilst my appetite is good.

Thursday brought the first dose of chemotheraphy. This came later in the day which gave my parents chance to visit from Leeds. It was good to see them both for the couple of hours they were here and again I think seeing me in good spirits and fighting fit will help them.

The chemotherapy itself was really uneventful. The nurse administering it sat with me for the duration and the chemo drugs only took 10 minutes to make their way in. A pink solution whose name escapes me was also given and I was warned that it might turn my wee pink - a later trip to the toilet proved the case. But after about half an hour the whole treatment was over and again so far there have been no adverse effects.

Friday was another quiet day and other than the steroids I've been on since the beginning there was no further treatment. I spent the day catching up on proofreading my family history book and watching TV.

Saturday morning was what I was looking forward to most - a visit from my wife and boys. It was great to see them all and they spent a couple of hours with me updating me on all the gossip from home, including school, football, rugby and the dogs antics. Just as they arrived I was put on another IV drip that eventually lasted till late in the day and left me bedbound during their visit. This was Rituximab, which is an additional drug that contains antibodies that attach to markers on the Leukaemia cells.

Despite being tied to the bed I still managed a cuddle with the boys laid alongside me and a hug with my wife which I think was a great comfort to them and meant a lot to me.

So here we are on Sunday. It's a day of rest (not that I'm religious anyway) and other than my daily dose of steroids there are no other treatments planned. So I'll chill out in front of the TV for the day and generally relax.

My consultant came to see me a short time ago and told me everything was going to plan at present but warned that things will get worse before they get better which I fully understand. I confessed to feeling a fraud at the moment as I feel better now than before I came in, but I know there is a long road ahead and some days will not be so good. Still, I'll keep fighting and the end of the road will draw closer.

Thanks again for reading and I'll see you all next time.

Steve.