Well its been an eventful few days since I last posted.

On Thursday morning, bouyant from the relative successes of the week, small though they were, I decided to join Sarah in Northumberland.  Sarah had been up there since the weekend on a break that we had both planned to take to celebrate her 40th birthday.  I checked out the train prices and was amazed to find I could get a ticket from Sheffield to Alnmouth (between Newcastle and Edinburgh) for just £13.00.  Even First Class tickets were just £22.00 - and, well you know me...

I boarded the train, found my seat and almost immediately a carriage attendant offered me a menu of items I could have for free as one of the priveliged few who had chosen to ride first class that morning.  And it was a few - there were 3 of us.  There were numerous drinks (I'd only just bought some water and a Coca Cola), as well as numerous paninis and all day breakfast rolls - to have the mouth watering.  Well, it did mine.  I declined the food and decided on a bottle of water and a Coke - discreetly popping my purchased bottles in my bag for later in true Yorkshire style.

The journey passed very  quickly and it wasnt long before I was pulling in to Alnmouth.  We had a look round and then made our way back to the beachside log cabin we were renting at Beadnell - which was lovely.  That night we called for fish and chips because Sarah had not had any all week - which seems rude when you ar eby the coast!  Well, I am delighted to report that having stolen 3 forks worth of fish, and one chip - I was able to not only taste them - but swallow them too!  It stung immensely - but that was only temporary until I swished the Coca Cola round my mouth.  We then went on to a gorgeous pub, http://www.shipinnnewton.co.uk/  where we met two friends Sarah had made earlier in the week on one of her many walks.  We had a cracking evening and a good chat - and I believe Annie and Steve (and of course Marley the dog) have already found the blog!

Friday came and we decided to visit Holy Island.  I've never been before and was pleased the tide was well out before we made our way across the causeway.  During our visit, apart from Lindisfarne Priory - a highlight was our visit to http://www.cafebeangoose.co.uk/  where I am delighted to announce I took on some vegetable soup and a cafe latte.  The first cafe latte I have had since February.  After Holy Island we called in at Bamburgh then back on to our accomodation, where I fell asleep and pretty much stayed that way til the Sat morning.

Saturday was our last day in Northumberland, and with a trip to the Lake District in the offing we did what all sensible people would.  We went to the beach.  The weather was gorgeous....  We also stopped at The Village Bakery in Melmerby on the way over to Grasmere - the home of organic bread. (I didn' thave any!).  I dd have another latte though!

On Sunday I was again encouraged to try something and so I sampled a spoonful of Angelas (from our fave gusthouse Banerigg) scrambled egg - and that went down very bell.  Later that day at Lucys On A late restaurant in  Ambleside I was very tempted by the tomato soup but it just proved to be that little to hot.  Not sure if the picture does it justice.

It was also far too spicy - however - err - the bread and butter was very nice.

Final choce on the menue was custard.  As you can see I didnt do a bad job with the custard!!
  

Obviously it was Sarah's birthday last night and I can't go any further without wishng her a happy birthday - HAPPY BIRTHDAY SWEETHEART - HERES TO MANY MANY MORE...

And to MOnday - not to many after effects from the meal other than usual - and I left to come home.

I hope thats not been too boring for you - I will livene th next oneup!!

Gonna log off now - all the best to everyone who sent me a card in hospital.

Have you ever typed while falling asleep?  The above few words in bold were typed while I was falling asleep (long day) and I will leav them as they are.  I have no idea what I was talking about whoth the 'all the best to everyone who sent me a car in hospital) - thats an entire mystery!!

All the best

Nigel xx

I did promise the blog weary amongst you that I would refrain from any further posts until my situation had changed significantly.

Well, I'm delighted to report that after almost a week and a half of morphine pain relief, Solpadeine and 2 hourly mouthwash swill with 2 separate types of mouthwash - my situation right now can only be described as 'much better'!!

As last week drew to a close the pains in my mouth seemed to be reaching their peak - and sure enough over the weekend they subsided.  I even managed to drink a few sips of Coca Cola on Sunday - although I had read on one of the advice sites (I think it was the Macmillan Cancer Relief forum) that Coca Cola was considered a good treatment for mucositis (although obviously doctors will not advise you to use it!!)

Not managed any food yet - but I'm going to try today.  Nothing difficult - I have some custard pots in the cupboard that I'm going to warm.  They were recommended by the hospital because they have a fairly high calorie count compared to some of the other rubbish you can eat.

So - things are looking up - pretty sure I won't be eating significantly by Sarah's birthday meal on Sunday (now THAT would be ambitious!!) but at least I'll be able to have a glass of coke to toast her beginning her 40th (yes 40th) year!

So, as I don't expect to type on here again until after your birthday - have a great day Sarah, happy birthday.  xxxx

I'm sure you will all join me in wishing her a happy birthday too.

All the best

Nigel xx

Totally non-health related posting here - so if you think its self-indulgent - theres always the 'off button'

A few days ago I installed the juke box on the site - for a few reasons I suppose. 

1. I thought it was quite a nifty gadget and that appeals to my geeky side.
2. Music speaks volumes about a person - and I know loads of people who havent a clue what music I like to listen to
3. I thought it might be nice to listen to a few tracks I've chosen while you read the site.

I've moved the jukebox to the bottom of the page for purely visual reasons - its a bit of a cumbersome tool and I didn't like that I couldn't move it around on the page, or change the width of it.  But if you scroll down and click play on any track, it will do just that, and then continue to shuffle the tracks and play til you leave the page.  If you want to keep the music playing while you view other web pages/email etc, just leave this page open and minimise it if you like, and open a new page for your continued browsing (sorry if thats teaching you how to suck eggs!! )

I guess I owe my love of music to two sources really,  When I was growing up Mum and Dad enrolled us in the June Tyrell School of Dancing in Rotherham - where I was taught from an early age to do the sort of dancing you see on Saturday nights these days in Strictly Come Dancing!  I hated it mostly (usually cos the kids at school regularly took the mickey), and usually because it coincided with a game of footy on the park.  However, it instilled in me a sense of rhythm thats never left me, and i still prefer music with a damn good beat or bassline.

The other source was a very good friend of mine, John, whom I met when my parents moved the family to live in Bahrain in the late 70's.  John worked at the same firm as my Dad, and was a young bloke at the time who seemed to have no end to his abilities - or workrate either.  In all the years I've known him, thats never changed.  His day job at the Aluminium plant in Bahrain seemed to get in the way of his lifestyle - he played in a band, dj'd in all the big hotels and clubs in Bahrain, he hosted a radio show on Radio Bahrain (the only English speaking radio station serving the Gulf), and did promotions work too.

During my time there - and with the benefit of living 3 doors away - I helped out with most things.  I roadied for him, answered the phones on his radio show, helped with maintenance of the gear.  It was brilliant,  I learnt so much about music in that time and remember with great fondness the radio show in particular.  It was on a Thursday afternoon (which was like our Saturday afternoon as its the weekend in Arabian countries) and ran from 3 til 6pm.  I know it was listened to by a massive proportion of the ex-patriate community and they would listen in while lighting their bbq's, and ring the show with requests.  A lot of the time they would also ring in and ask us to 'tell Pete to collect 2 more steaks on his way home, Pat and Dave have called round'... 

But what I remember the most was the music.  I remember great tracks that I would never have listened to at home by people like Amen Corner, The Beach Boys, Aretha Franklin, Nina Simone, Sam Cooke, Otis Redding, Fleetwood Mac and many many more.  It was brilliant stuff for a lad of 11/12 to grow up on.  And it gave me such an appreciation for where music had come from.

You could hear the influences in later tracks taken from earlier stuff after a while.  John used to explain it to me, and at first it went completely over my head, but after a while started to pick up on it myself.  Its incredible just how much music derived (and still does) from the late 50's and Chuck Berry, Buddy Holly, Ray Charles and of course, the King, Elvis Presley. (My Dad hates Elvis Presley - to this day I think he's still bitter that he never visited England! - isn't that right Dad!!)

I guess theres no need to explain why some of the tracks are on there - given the background I've just outlined.  You may be surprised by some choices though.  To be honest - one of the hardest questions I can ever be asked is "Whats yur favourite ever 3/5/10 songs.".  I could spend days deliberating over a question like that, going through my CD's and I-pod, writing tracks down and scribbling them out!  So please - don't ask!

My favourite album of all time is dead easy - The Lexicon of Love by ABC.  They were a Sheffield band in the 80's - the music and lyrics were just perfect on every song on the album - and it's still a regular in the car.  People will remember Poison Arrow and The Look of Love - I know the lyrics to every song on the album I've listened to it so many times.

Favourite present day music? Theres some great bands out at the moment - I really like the Killers, Embrace and Snow Patrol. i can listen to the Klaxons when i'm in the mood, and of course Sheffield is really back on the scene with the Arctic Monkeys and Reverend and the Makers.  Not bothered about Little Man Tate though.  And of course the dance music scene is fantastic - anything that Fedde Le Grand touches turns to gold!  Everytime I see footage from a Faithless concert I want to be there - so maybe i could be the oldest swinger at one of their gigs in the near future... Favourite current Track - Newton faulkner - Dream Catch Me - it had me in tears a few times I don't mind admitting during the last 6 months - the words just seemed to  talk to me in a way thats difficult to explain.

Music from the past?  Well, thats really tough - theres just so much to choose from.  I'm constantly accused of being stuck in the 80's - and why the hell not!?  The Human League, Depeche Mode, OMD, Heaven 17 and New Order were all brilliant, and there were brilliant one-hit wonders like Belouis Some (I'm not counting Some People as that was rubbish), and Danny Wilson (not the former Wednesday player!) who recorded Mary's Prayer - which is always up near the top of my list of favourites, Colonel Abrams with Trapped and Ten City with 'Thats The Way Love Is' - probably the best dance track of all time.

I was a slow starter with Oasis.  Ive seen them a few times live now and have vowed to catch them live every year they tour now - they really are a band better heard on stage.  If you can cope with all the unsavoury things the crowd throw around in pint pots of course.  I saw them at the City of Manchester Stadium in 2006 - and that was quite lterally the biggest 'singalong' I've ever witnessed!! The following night I was at the Reebok stadium in Bolton to see Coldplay - and while it was a great gig - it really didn't get close to touching the quality of the previous night.  If you havent seen Oasis - make the effort.  But take a brolly

Flicking through my playlist - I reckon theres as much stuff from the 70's as the 80's and thats clearly as a result of Johns influence.  Theres plenty of Ska - from The Beat to the Specials and I really liked Selecter in the day.  Theres also plenty of early stuff from Michael Jackson - his Off The Wall album regularly sits alongside ABC in my car - he's a brilliant (if slightly troubled) performer - but then show me an artistic genius from the past who didn't have similarl issues!

I'm sure some will question the inclusion of the Carpenters.    The Carpenters are Sunday mornings growing up at Mum and Dads - right from being toddlers to teenagers.  Actually - as teenagers we were regularly awoken with the sound of the Carpenters - Mum not being one to sympathise to hangovers too much.  Now why couldn't it have been Curtis Mayfield - Move On Up to wake up to - there is no better song to start a Sunday morning to!  Especially if you're having freshly squeezed orange juice and croissants! (I'm sounding like a Marks and Spencers advert now!)

Rappers Delight by the Sugarhill Gang is another song I know from start to finish - its been played so much in the car. Even the kids know this one off by heart - which I think is pretty impressive considering its quite a complex rap in places - but it certainly demonstrates they are getting a good upbringing!!

I can't finish without a mention for Marvin Gaye.  What a loss he was to the world of music and still with so much ahead.  The same with Freddie Mercury - I never saw Queen live either - so I guess the moral of the story is - if they are touring and you have always fancied seeing them - go and see them. You never know whats round the corner - for them (or you) - so do it. Now.

Anyway - I've just spotted how many words I've typed and realised that this really is a self-indulgent topic - if you've made it this far - WELL DONE!  Many thanks to Mum and Dad and particularly John R for shaping my musical tatses thus far - and I hope you enjoy the playlist I've put together.

All the best

Nigel xx

PS: As I'm just about to publish this topic Chasing Cars by Snow Patrol is just finishing - what a song. Perfect. 

PPS: I can't believe I've written that entire article and not mentioned George Michael - or even given him a track on a playlist.  Can you imagine me trying to trim that list to 3/5...

Hi peeps

OK, the Corsodyl and Difflam combination mouthwash appears (a this very early stage) to be having some positive benefits, along with the increased morphine - and so I'm starting to up my liquid intake ever so slightly. I will try tomorrow - its a long and painful process so bear with me.  Ive also been using a 'Saliva Replacement Gel' at night - sounds disgusting - believe me, it is.  I apply it to my tongue with my finger then use my tongue to coat the rest of my mouth - stings like mad to start with but applied 2/3 times during the night it has been helping me sleep.

So progress, albeit tiny - but progress all the same.

As a result of my increasing boredom, and the fact that I'm always trying to teach myself something new - I've been playing with 'web widgets' these last couple of days. The music widget you see above is one of them, I love it but think its a bit too big where it is - again bear with me and i'll see what I can do - but I thought you might want to play some music that I have personally  chosen while reading the site - and I'm sure i will receive more complaints than compliments!  Just click on it - it will play randomly but if you see tracks you like click on them and it will override the randomness!!  I will be adding to the track listing over the next few days - the ones you see where the first ones that came to mind this evening....

If I get loads of complaints I'll probably remove it - but hey, its my site - who knows!!

See you later

Nigel xx

3rd blog post in 4 days?  Its obvious who's bored isn't it!

I'll apologise in advance because this post is going to be quite educational in places and I know most of you read this blog to be informed - not educated!

Following another sleepless night we contacted the hospital yet again (I hope they don't think I'm a pain) and were told that my oncologist Bernie was at Doncaster Royal Infirmary this afternoon - but (as is usual with their helpful nature) I was more than welcome to attend the clinic there.

I agreed and thanks to sister Lou for chauffeuring duties today.

The morphine dose I had been prescribed really wasn't touching the pain last week, so I read the leaflet that came with the bottle and re-prescribed myself an increased dosage in line with the instructions.  This again didn't seem to be working and so I started taking the morphine in conjunction with Solpadeine - a very strong soluble pain relief that can be taken through the peg.  Frustratingly - nothing seems overly effective at reducing the pain of the oral thrush.

And following todays appointment with Bernie (where she put a camera up my nose again 'to have a good look at the throat from the inside') its becoming clear why nothing is working on the oral thrush.  Its because I don't have oral thrush. At all.  It is mucositis after all.  And I have a lot of it.

People who don't like graphic descriptions should perhaps stop reading now.

OK, this is the educational bit.  The mucositis has basically attacked my tongue, inner cheeks and throat and is a common side-effect of radiation therapy in head and neck cancers.  What it has done is  stripped the lining of the soft membranes in my mouth, leaving the red flesh and nerve endings that are underneath exposed.  Which would explain why drinking even water is so painful.

This is an extract from Wikipedia about Mucositis.  Clicking on any of the red 'links' will take you to the Wikipedia page for more info.

 Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer.

As a result of cell death in reaction to chemo- or radio-therapy, the mucosal lining of the mouth becomes thin, may slough off and then become red, inflamed and ulcerated. The ulcers may become covered by a yellowish white fibrin clot called a pseudomembrane. Peripheral erythema is usually present. Ulcers may range from 0.5 cm to greater than 4 cm. Oral mucositis can be severely painful. The degree of pain is usually related to the extent of the tissue damage. Pain is often described as a burning sensation accompanied by reddening. Due to pain, the patient may experience trouble speaking, eating, or even opening the mouth.

Diagnosis is based on the symptoms the patient is experiencing and the appearance of the tissues of the mouth following chemotherapy, bone marrow transplants or radiotherapy. Red burn-like sores or ulcers throughout the mouth is enough to diagnose mucositis.

Treatment of mucositis is mainly supportive. Oral hygiene is the mainstay of treatment; patients are encouraged to clean their mouth every four hours and at bedtime, more often if the mucositis becomes worse. Water-soluble jellies can be used to lubricate the mouth. Salt mouthwash can soothe the pain and keep food particles clear so as to avoid infection. Patients are also encouraged to drink plenty of liquids, at least three liters a day, and avoid alcohol. Citrus fruits, alcohol, and foods that are hot are all known to aggravate mucositis lesions. Medicinal mouthwashes may be used such as Chlorhexidine gluconate and viscous Lidocain for relief of pain.

 And so endeth the lesson.

It was suggested that in order to increase my drinking of liquids it is important to get the pain under control.  I now have to take my morphine every 2 hours, not 4.  I also have to maintain the Solpadeine - though stick to every 4 hours with that.  I have a range of mouthwashes too.  One thing that wasn't prescribed was Corsodyl mouthwash - but I've just had a rinse with that as I was in the bathroom anyway (after diluting it with water - all of the mouthwashes are far too sharp without dilution) and that has relieved the pain quite a bit - briefly yes but its a start.

After the appointment I was introduced to the Speech and Language therapist Sam, who was lovely.  She was so understanding and I have a follow up appointment with her in 3 weeks, when hopefully the tongue won't be as sore and we can start working on some exercises for the tongue, throat, neck and mouth.  (Not THOSE kind of exercises - I just know where some of your minds would be going with that)

I have to do these to regain full movement - as you can imagine with the pain on my tongue I am starting to speak with minimal use of the tongue and this is making me sound quite strange.

So I've had a quiet evening in tonight in front of the Germany-Austria game, talking to nobody as Sarah has been in Sheffield watching The Wedding Singer at the Lyceum.  I hope whoever got my ticket for this really enjoyed it.

I've just realised I've already typed far more than I'd planned and with 3 posts in 4 days I'd hate to get accused of boring you all - so with that in mind I will bid you 'Good night' and promise you - no more blog posts until things change - significantly!

Thanks for stopping by

Nigel xx

PS:  This is quite an important PS.  Can I apologise to people close to me at the moment - you all know who you are.  I know I'm being very grumpy at the moment, and I know that as the people nearest to me you probably are on the sharp end of my tongue more than any of you deserve at the moment.    I'm really genuinely very sorry.  I start each day consciously thinking 'I will be more tolerant today'.  At the moment I seem to break that promise before 9am on each day.  Its not personal (at all) its entirely down to pain and frustration and none of you deserve it.  And I don't deserve the way you all manage to bite your own tongues (I will stop talking about tongues in a minute!) and not shout back at me.  Well, some of you don't!

Please, if I'm being grumpy or short - tell me.  Sorry again.  Love you all.

...... throat actually. And tongue, cheeks and everywhere else in the mouth.

Fathers Day kicked off with a call to Weston Park.  I had spent pretty much all night without sleep and suffering the worst pain in my mouth and throat since I was diagnosed last year.  That includes all of the radiotherapy, chemotherapy and also the operation I underwent at Christmas.

I cannot find words to describe the pain in my mouth.  Imagine pouring bleach into an open cut on your tongue?  I also cannot swallow at all now, other than the very odd sip of water when my mouth dries out so much I can't talk.  Even the water provides intense further pain - so I really do take it sparingly.

Everything is going through the peg tube right now.

Weston Park suggested I be re-admitted.  I wasn't keen on this so as a second option they suggested calling out the GP on-call team.  This we did and I was diagnosed a further course of Flucanazole for the oral thrush, and another bottle of morphine.  Sarah's been to the chemist - but being a Sunday we could only get the morphine - so I will start the Flucanazole tomorrow.

Needless to say I am extremely frustrated with the whole situation, I guess I just have to keep counting my blessings and remembering that there is plenty of people out there who would love to be in my position...

I felt so well yesterday and even found time to attend the Weston Park 5-a-side fundraiser for an hour - where some of the Owlstalk regulars had put together a team.  While they didn't win the tournament - they did raise £2000.00 along the way which is a teriffic achievement - well done lads (and lasses!).

OK, gonna have a kip now - its the best way to relieve the pain.

All the best

Nigel xx

Do what you feel in your heart to be right. You'll be criticised anyway.  Eleanor Roosevelt 1884 - 1962

The public is the only critic whose view is worth anything at all.  Mark Twain 1835-1910

Since my last blog I have received a couple of adverse comments.    It seems my comments about my experiences in Weston Park Hospital weren't to everyones taste, a little too graphic in their description.  Well, I've thought long and hard about them and also about quotes like the ones above, and the reason I've used the two above quotes is that the message is quite different.

I absolutely take on board the comments - yes criticism - I have received.  But, I was doing/saying what I felt to be right - and while I hadn't expected criticism for that - I can fully understand why.

I won't dwell on it - not here anyway - but I hope that if my comments have upset anyone that you can accept my apology first and foremost, but also understand my reasons for posting what I did.

Cancer is a very serious illness.  However I should emphasise that survival rates are improving all the time - for example 80% of breast cancer patients will survive - and so many more people will walk out of Weston Park with a smile on their face than the people I outlined last week.  I guess I just had a bad week...

Anyway - enough of that.

Since I left Weston Park last weekend the pains in my mouth have still not subsided.  I was given stacks of medicine, 2 lots of antibiotics (one of them a double dose in strength), an antacid and also morphine.  I also brought home some more pottassium tablets that are soluble in water to put through my peg.  While in hospital they did various blood tests and apparently the potassium levels in my blood were low - which would explain why I had been feeling so lethargic of late.  By the time I left they were back to normal and I felt so much better I actually mowed the lawns at home on Saturday afternoon!!

So Ive been feeling fine for the last week except for the mouth pains.

Yesterday was my second review following radiotherapy - can you believe its now been 8 weeks since my final radiotherapy session?  Everything was fine and they took another swab of the coating on my tongue - they think now that the oral thrush could be a different strain than the one we have been trying to treat - which would explain why a double strength dose hadn't cleared it.  New medication hopefully supplied next week will then hopefully get me back on the road to recovery.

A word on morphine.  WOW!!  Some of the hallucinations I've been having are incredible!!  I keep feeling like I'm asleep and apparently I'm not, although I am very tired for about 1/2 an hour after taking it.

Well, as its Friday I should wish you all a very good weekend, hope that whatever you have planned will go well and you come to Monday relaxed and refreshed.  Make time for your families....

Ooooh - as an aside - and while I'm mentioning families - lots of people have been asking about my Dad and his hip.  He was told he could take the brace off his leg on Thursday but have advised him he needs a new hip - to be fitted in 6-8 weeks.  So not the best news but we will get through it.

All the best

Nigel xx

As many of you will be aware from the last few entries I had quite a busy weekend planned!!

Well, as they say about the best laid plans...

I didn't mention in the wedding post how much pain I was in as I posted that night. My mouth was burning spectacularly, and all the usual techniques were having no effect. Sarah even went to Boots for Paracetamol and Codeine solubles (the strongest painkillers) and even they didn't help. We rang Weston Park who wanted to admit me, so like the awkward idiot I am I decided to try and sleep it off!

The following morning was no better, so I decided that the Lakes was probably a bridge too far and I sent Sarah off with the dog and they had a great time. To be honest I spent pretty much all day in bed, but still managed to watch Saturday Kitchen!!

Sunday brought the same problems and so I missed Aston Hall for Chloes 18th. The family did come back to ours after for champagne and I raised a glass of water inm her honour!

On Monday, with no improvements again (if anything things were getting worse) we rang Weston Park and they asked us to come in with an over night bag 'just in case'. Its now Thursday as I type this - and I'm still here!!

I've just met with my doctor who has put the camera up my nose (its specialised not a digital camera for all those who tell me I have a big nose). Apparently everything looks normal and is what they would expect for someone who had such aggressive treatment. The problem I have is mucositis in my throat, tongue and cheeks and it is recognised as being very painful and a very common side effect.

I've been on morphine all week as well as numerous antibiotics, plus a pottassium supplement as my pottassium levels are low.

Its not been the most pleasant of stays. Don't get me wrong, the nurses and staff have been as immense as ever, but its been very difficult being here and being more conscious of what's happening to people around me.

There are a number of people I'm aware of who are clearly leaving Weston Park in the worst possible way. I overheard a man in another room screaming for his Mum the other evening (around 2am) such was his pain. He died the next morning.

I've seen people who have been told their tumours are inoperable and seen at first hand just how that destroys people. There's a man on my ward who doesn't know what planet he's on and he has just found out he has two brain tumours.

Its strengthened my resolve to spend as much of my spare time as possible doing everything I can to raise money for cancer research and Weston Park Hospital in particular. The term 'angels' has been used many times to describe nurses. Its never been more appropriate to describe the very special people here. And the doctors are bloody 'Saints'.

All the best

Nigel xx