Baldy's Blog

I thought nothing could shock me after everything I have been through in the last 18 months.

Then I finally got the news today from my most recent bone marrow sample.

Please bear in mind this test was carried out before I went mental and stopped taking my pills.

At that stage I was taking the drug Glivec which should be effective against the chronic/strange form of the disease.

But, as regular readers will know from my weekly whinges, I have also had that post transplant complication known as Graft versus Host Disease.

Collectively, these bad boys should have stopped any leukaemia from returning.

Well today was a bit of a shocker to say the least.

Continue reading "Bone marrow results" »

How many times can someone get kicked in the head and keep picking themselves up?

This latest blow has well and truly floored me. I've tried my best to turn this situation around, carry on with work, and see my friends, but I just can't do it.

Now before I drown you all with my unrelenting misery I'd like to say thank you to all the new readers and the people who have taken the time to comment.

As you can see from previous posts I really think it's important that I should reply to people who have given their time to support me and wish me well.

Continue reading "The drugs don't work..." »

Just over a week ago I nearly took my own life.

I had drunk a generous glass of whiskey and was lying on my bed. I am sorry to say it now but I have never felt so worthless and empty.

Despite everything I have been through there just seemed no point in carrying on.

There was no hope at all.

An overdose seemed the most logical option. I had even worked out the order in which I was going to consume the copious amounts of tablets stuffed in a bag by my bedside.

I'm ashamed to write this but that is the truth and I suppose this is what my blog is all about.

To indicate just how serious I was I had started playing all my Radiohead albums! God I'm a cliche.

What stopped me in the end was maybe cowardice - a drugs overdose will be a slow and painful death - but mainly thinking about just how cruel it would have been on my family.

I know there are lots of people, including readers of this blog, who care about me and don't want me to die - even though I care much less now.

When it came to it I just couldn't do it.

This is how I turned things around with a lot of help from some wonderful people.

Continue reading "Saved by my family, my friends and this blog" »

This time I have some really sad news.

Poppy has called off the wedding and decided to separate.

I have never been so sad in all my life.

I am utterly heartbroken.

But the most diffcult thing is that I don't blame her.

There was no big argument; I think there was just the slow realisation of what getting married to me means.

Me and Pops before the illness. This is what I used to look like

She also has a new job up in Hartlepool and all these factors together made her think she could make a clean break.

As for me I already miss her so much and my life is in tatters.

Continue reading "Heart break" »

I must begin this post with some more sad news.

My much loved N-reg Fiat Punto has died. I had come to think of it as the Herbie of the Leukaemia world.

Time of death 3pm Tuesday March 31 2008.

Location: M1 northbound just short of Wooley Edge services between junctions 38 and 39.

RIP little guy.

Of course my old car giving up the ghost wouldn't normally feature in my leukaemia blog but it's such a strange story I thought I had to include it.

Continue reading "The Punto is dead - long live the Vectra. Plus 5mg of steds a day and a more serious flare (Part 32)" »

I think this post illustrates just what a knife edge people with chronic Graft versus Host Disease - and who are trying to come off their steroids - are really on.

This is a video of me on 10mg a day. If it wasn't for the sted face I would happily stick now.

However, after two days of dropping down to 7.5mg this happened to my back...

Continue reading "Graft versus Host flare and continued steroid taper (Part 31)" »

Plunged into despair, buoyed by incandescent hope, crushed by another set-back, fighting illness and misery from all quarters, stuck in an impossible situation yet life remains rich with possibility; determined not to let this disease beat me.

What a pretentious gob shite.

Now let’s get down to business.

Continue reading "No pictures of my arse this week and can you help with a little dilemma? (Part 30)" »

It’s back.

The steroid dose is now down to 12.5mg a day and the chronic Graft versus Host Disease (cGvHD) has started to bubble up to the surface of my skin.

The affected areas at the moment are my thighs and elbow pits. It’s a horrible experience but bearable. At this stage I think it can still be managed by moisturisers and steroid cream.

What is difficult to deal with is that I know it’s only going to get worse.

The treatment at Rotherham may have helped but it certainly has not cured me.

The pessimist in me would be keen to point out that I’m actually worse off today than I was before my bone marrow transplant.

Now I’ve got leukaemia, cGvHD, a terrible immune system, normal energy levels and a head like a Space Hopper.

Continue reading "Graft Versus Host with the Most (Part 29)" »

I have just found out that the chronic myeloid leukaemia could be back.

I couldn’t believe it when my doctor revealed the results of my second bone marrow sample. I was just so confident it would still be a total remission.

However, I am not too worried about it.

As a journalist you are trained to put the most interesting facts at the top of the story. The purpose of this is to grab the reader’s attention and make them want to read on.

I hope that’s been achieved.

Now, before I explain why it’s important not to be too concerned at this stage, please permit me a little bit of whinging.

Continue reading "Bad news but don’t worry too much (Part 28)" »

Dr Donna McCormick and husband Greg Iredale

I have had a day of very mixed emotions.

My job involves editing the Huddersfield Examiner's website and when you read today's front page article I think you will understand.

http://www.examiner.co.uk/news/local-west-yorkshire-news/2008/01/10/the-best-daughter-in-all-the-world-86081-20334578/

I have spoken to Donna's mum and emailed her husband Greg.

I just wanted to say again to Donna's family that I am thinking about you all at this very difficult time and thank you for all your kind words.

Adrian

Happy New Year to everyone and thank you for all your lovely comments.

After a wonderful Christmas and New Year it’s sadly back to business and in the next couple of weeks we should know how effective the photopheresis at Rotherham has been in treating the chronic Graft versus Host Disease (cGvHD).

The steroid taper is rapidly approaching crunch time. If the treatment hasn’t been successful the unpleasant problems associated with cGvHD will reappear.

These could include:

● Incredibly dry skin
● Impaired joint mobility
● Unbearable itchiness

The bad news is that some of these symptoms, albeit in a very mild form, have started to emerge already.

I’m convinced that cGvHD is something I will have to live with for the rest of my life.

The question is just how debilitating it will be.

Continue reading "Crunch time (Part 27)" »

Just a quick post to let everyone know Poppy and I are engaged!

I asked her to marry me after midnight mass and she said yes. I know I'm not a great investment but it just felt like the right thing to do.

It was a brilliant Christmas Eve and we had loads of friends round at my parents' house in Pinxton, Nottinghamshire.

Joining me and Pops here are my mum and dad, my sister Carrie, and my best man Ben Hunter.

I have no idea what this year holds- and no idea about wedding plans - but I know if I can last until the summer it will be a fantastic do.

Once again wishing all readers a very merry Christmas.

The equivalent of around three bags of blood has gone missing from my body.

Needless to say this came as a bit of a shock yesterday.

Since being discharged from hospital on Monday with the viral chest infection I’ve been feeling a little drained and run down.

I also found it hard walking to the shops without getting out of breath.

But I just assumed all this was down to my body slowly recovering.

On Thursday I came back over to Rotherham hospital to continue with the Photopheresis treatment for Graft versus Host Disease.

Merry Christmas from the photopherisis team!

Continue reading "A bloody mystery, salad days and pork pies (Part 26)" »

Just been discharged and it’s great to be out.

Even though the cough hasn’t entirely gone it’s much better than it was before and I’m assured that the treatment has probably got rid of the virus.

The doctors told me that it is likely I’m no longer infectious and the cough will just work itself out.

It’s really strange getting a viral infection like this and knowing I have not got an immune system to deal with it.

The advice, as ever, remains if it gets worse - come back in.

I really hope it doesn’t. I’ve got more pressing matters to attend to including a bit of last minute Christmas shopping and spending lots of time over the festive period with Poppy, my family, her family and friends.

Two difficult issues remain nibbling at the back of my mind though.

Still not heard back from my latest bone marrow sample and we are approaching crunch time to find out just how much of a problem Graft versus Host Disease is going to be.

So it turns out the cold was a little bit more serious than first thought.

Here I am again, having a cup of tea – and some more treatment - back in the Royal Hallamshire hospital.

My cold-like symptoms are actually being caused by a virus called Respiratory Syncytial Virus (RSV). In most people it just gives them a nasty cough and cold.

Their immune systems will usually take care of it unassisted within a few weeks.

But for people like me, who are pumped up on steroids along with other immunosuppressants, the situation can be much more serious. If the infection takes hold and spreads it can cause pneumonia or bronchiolitis.

One of the doctors told me that in these cases mortality can be as high as 50% - crumbs!

Continue reading "A 50% chance of dying! I’m not having that – it’s nearly Christmas (Part 24)" »

THIS IS TRON - OBEY ME

There is no cure for the common cold so with all the bugs that are going round at the moment it was inevitable I was going to catch something.

After weeks of feeling good on the ‘steds’ (steroids) I am now starting the come down. Coupled with a mild cold and slight chest infection, I just feel run down and drained.

You try not to worry but it’s hard not to. I know that the steroids and other drugs I am taking are stopping my immune system from working – so what exactly is going to fight this infection off?

The good news is that most colds are caused by viruses that are limited in their ability to do serious damage. Most just get into your system and burn themselves out.

But for people like me because my body is putting up little resistance this process can take longer and other infections can develop.

That aside the good news at the moment is I haven’t got a temperature which means the infection is limited and I can continue to function as normal.

Continue reading "A new existence and my first cold (Part 23)" »

I have just got back from the hospital following my second routine bone marrow sample.

It was fine, didn't hurt and is not sore at all. We were hoping to film it today but were unable to get it organised in time.

I wanted to show people that it’s not a scary procedure and hoped that it might get more people thinking about bone marrow donation.

As I said before in previous posts 70% of bone marrow donation is now very similar to giving blood. Sometimes a bone marrow harvest - where it is taken from the back of the hip under a general anaesthetic - is still preferred.

What I had today with a local anaesthetic only involves one needle and a small sample is taken. The harvest uses more needles but is otherwise very similar.

Anyway, this time I'm really confident that the leukaemia won't have returned.

Continue reading "The second bone marrow sample (Part 22)" »

Baldy's Blog has won another award. Last night I was named feature writer of the year at the Yorkshire Press Awards.

It was a brilliant night and the Huddersfield Examiner also scooped the top award for headline of the year.

It was great going out with my work friends again. Needless to say plenty of alcohol was consumed.

Continue reading "It's the hat-trick!" »

I think seeing Extracorporeal Photopheresis (ECP) makes it much easier to understand. I really hope this video is useful to anyone else who may need this treatment in the future - check out the big needle too!

The point of this treatment is to cure my chronic Graft versus Host Disease (cGvHD). I have around a 50% chance of it working - but I remain worried.

PS. It's been really hard convincing people that this condition is actually pretty serious!

Continue reading "Treating chronic Graft versus Host Disease with photopheresis (Part 21)" »

Video diary, part 12

I still can't quite believe it, but yes, it's actually happened, I've started this entry to my Leukaemia blog with the words "Yee-Ha!!!!!"

Baldy's Blog has now scooped an international award in the world's biggest blog competition. From Yorkshire to Las Vegas - who'd have thought it?!

A total of 545,446 votes were cast in 49 categories.

What a result and thank you so much to everyone who voted for me. Last week's voting was so much fun and a really welcome distraction. Can I just say how interesting it's been too reading some of the other blogs in my category.

If any of their authors are reading this I'm just a journalist working in Huddersfield but living in Sheffield in the UK. It's been quite an experience dipping into the world of big-time blogging. There is some really impressive stuff in our category. I wish you all continued success.

Continue reading "Victory in Vegas!" »

This is Liam reporting live from The Joint in the Hard Rock Hotel. I'm at the 2007 Web Log Awards - you know that thing Adrian had us all voting on. I'm the lucky bugger Adrian sent on his behalf so far that luck hasn't translated to the card tables but fingers crossed it will work for Adrian tonight and he will have won the best Health blog award.

Continue reading "Live from Las Vegas: Winning result" »

THANKS FOR VOTING - POLLS NOW CLOSED

Incredibly Baldy's Blog is a finalist in an international competition - the results will be announced in Las Vegas early Friday morning (UK time). Crazy isn't it?

I think the award will go to the blog with the most votes so if you have enjoyed reading my posts please get voting. You can vote once a day. There is no prize - and it would be too risky for me to fly to America - but it sounds like fun!

Please just click on the logo and vote as much as you can. The blog is a finalist in the best medical/health issues section.

Best wishes to you all, Adrian

One of the hardest aspects - after having hopefully overcome two-types of leukaemia - is explaining to people that this post-transplant complication is potentially just as life-threatening.

My new bone marrow has engrafted successfully. It is making new red blood cells, platelets and white blood cells – the cells that help fight off infection. Unfortunately, these new white blood cells are starting to attack my skin. If left alone they could attack other organs of the body including the liver and lungs.

Chronic Graft versus Host Disease (cGvHD) leads to the death of a significant number of transplant patients every year. If it can’t be cured then the sufferer can be left with seriously debilitating long-term consequences.

The good news is there are a number of treatments now available. Many of them are cutting edge and more research is required to understand exactly how they work. The treatment I have just started also frankly sounds mental! It involves a kind of dialysis machine, chemicals, UV light and Rotherham.

I hope this post will explain in a bit more detail the nature of cGvHD and the treatment that offers me a 50% chance of long-term cure. On a personal note, I have to say I am worried about the future. I’ve just got this really bad feeling that I’m not going to fully get over this.

Continue reading "Treating chronic Graft versus Host Disease (Part 20)" »

Last week when I realised I would need another three months of treatment it’s fair to say it got me down a bit. The next phase is extremely complicated and not well-understood so I will explain further in the next post.

To boost my spirits I took a road trip to see more of the friends who have been so helpful to me throughout the last year. As I mentioned before, despite bloating my face and body, the steroids are actually making me feel pretty good, so I thought, 'Let’s get away and do something positive'.

If you were wondering, the man in the picture is my good friend Horace Woollard - supping the elixir of life. He’s 84 and needless to say is an absolute legend. Now you have the opportunity to meet Hoarce too, along with some of the other fantastic charcters I encountered on my A1 adventure down south.

Continue reading "Fat Face on tour '07 (Part 19)" »

I'm delighted to be able to tell you that the blog has won a prestigious national award from the Guild of Health Writers.

Baldy's Blog won best online feature award at a glitzy-do at the Foreign Press Association, off the Mall, in London.

I know everyone says it but I genuinely didn't expect to win. I had, after-all, been in hospital that morning for a check-up and things are not going quite as smoothly as I had hoped regarding the latest complication - but more on that another time!

I was told a while ago that I had been short-listed so Poppy and I were determined to make the most of our trip to London. Not winning didn't really matter, it was just a great opportunity to escape from Sheffield, get dressed up and have a really good evening. And that is exactly what we did.

Continue reading "Baldy's Blog scoops national award!" »

Just when everything seemed to be falling into place I have had another kick in the teeth.

Yet again it's potentially very serious, possibly untreatable, but if it was anything less than that I am sure you would refuse to read on any further - and quite right too.

I have a suspected outbreak of chronic Graft versus Host Disease (cGvHD). As you can see from this picture it has attacked my skin leaving it flakier than a flapjack and as sore as salt and vinegar crisps on a mouth ulcer.

So sit back and let me tell you a tale of a red raw epidermis, high dose steroids and the undeniably homoerotic application of baby oil.

Continue reading "A touch of chronic Graft versus Host Disease (Part 18)" »

Hello everyone. There's been good news as you know, and unfortunately bad news too. It's been a difficult couple of weeks as you will have gathered from my previous post. I was also yesterday diagnosed with a case of chronic graft versus host disease so have been feeling less than 100% for a little while - just as it looked like I was getting back on my feet. Well, at least it gives me something else to bore you with at a future date!

I really wanted to take this opportunity to reply to some of the fabulous comments I have received regarding being given the all clear. I don't get chance to go online everyday but again the level of support has been incredible so here we go.

Continue reading "Replies to readers" »

Andy Sage was one of the funniest and most courageous men I've ever had the privilege to know.

The 42-year-old Sheffield brickie was my best friend on ward P3 throughout the 10 months of my treatment.

He was one of those human beings who would light up a room and could get even the most miserable sods in there laughing. He was a massive character in every sense of the word measuring well-over six foot and weighing in, I'm sure he wouldn't mind me saying, at just a little over rotund.

Such was the size, strength and heart of the man he always, for me, carried an aura of invincibility.

When you're in a terrible situation, like anyone undergoing intensive treatment for cancer, you need people to help keep your spirits up and Andy did that in spades. His banter was incredible and wit as quick as any stand-up comedian.

Continue reading "Andy Sage" »

Finally some great news - I've been given the all clear.

It's hard to describe how relieved and elated I feel. I found out earlier today when I phoned the hospital braced for bad or no news.

I was told simply that the results had come back and there was no sign of either type of the disease.

After living for ten months with a complicated form of leukaemia I had feared the worst. When the doctor told me there was no sign of the disease in my last bone marrow sample I asked him to check, and then double check the results, before I could finally take them in.

Continue reading "Great News (Part 17)" »

The wait goes on. I've still not heard anything so continue to wait nervously.

I'm not sleeping brilliantly but apart from that I'm fine.

The good news is that my Hickman Line, that tube running out of my chest, has been removed from my body. It's literally been a part of me since December and has undoubtedly been a big part of my treatment.

Every time blood needed to be taken, or chemicals administered - which was most of the time - the Hickman line, named Fred by my aunt, has made it all possible without the use of needles.

Continue reading "Line Out (Part 16)" »

My Video Diary, part 10

Apologies for not updating this blog sooner.

I felt for a while that I should have written something but I was never quite sure what to say. The amazing comments that have come from the hundreds of people regularly taking an interest in my story have been unexpected and inspirational for me.

It's also been helpful knowing that the posts have provided a useful insight to people who will have to undergo a bone marrow transplant in the future.

I suppose it's with this group of people in mind that I've been most reluctant to write anything else. Much of my time post-transplant hasn't been much fun and I'm still nowhere near full-fitness.

I finally decided to write this post after talking to my grandma in Nottingham. Basically she's bullied me into writing it arguing that people respect honesty and the truth- even though it doesn't always make for pleasant reading. I think she's right, so here we go.

The first thing to say is I am waiting for the results of my final bone marrow sample. It's been sent away for analysis and the results will show that the leukaemia is either still here or gone completely.

Continue reading "The Waiting Room (Part 15)" »

My Video Diary Part 9

My Video Diary Part 8

My Video Diary Part 7

My Video Diary Part 6

My Video Diary Part 5