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14/08/2014

My 34th year

Wednesday, October 22, 2014
I've been working myself up for a while about this, but tomorrow marks the first of the award ceremonies I am invited to. I have three such events in eight days and I'm extremely nervous about all of them. Tomorrow is the 'Best in Care' awards ceremony organised by the Queen Elizabeth Hospital in Birmingham.

Tuesday, October 21, 2014
I'm still recovering from a busy weekend and haven't felt 100 per cent today. My ear ache has subsided but I'm suffering from fatigue. This is another wakeup call for me as I try and continue life as normal but often pay the price for it afterwards.

Monday, October 20, 2014
I feel drained today, clearly the Great Birmingham Run yesterday has zapped me of energy.
You'd think that I'd run the marathon myself from how I feel rather than me just photographing the event.
I've also been suffering with ear ache which I'm putting down to the strong gales which were blustering around Birmingham yesterday. I need a few days to recover now but at least we managed to capture more than 700 photos for Cure Leukaemia - we took more than 7,000 overall.


Sunday, October 19, 2014
I may not be able to run the Great Birmingham Run for charity but I'm able to help in other ways.
Today I was taking photographs of the runners on behalf of Cure Leukaemia. If you watched the race live on Channel 5 you would have spotted me quite a few times in the media circle by the finish line.


Saturday, October 18, 2014
My tongue is slowly getting back to normal after a couple of very painful days.
I've pinned the problem down to sucking boiled sweets. I had a couple during a car journey on Tuesday and my mouth has suffered since. Small, simple things can create so many problems.


Friday, October 17, 2014
I have to commend Channel 4 for dedicating an entire evening's television to the Stand Up 2 Cancer campaign. There were some truly heartbreaking stories over the evening.
It's a shame that a campaign to help eradicate cancer doesn't get as much advertising, publicity or support as we're used to with the televised appeals for Children in Need and Comic Relief.
I'd like to see this campaign grow in future years as at present, one in three people will develop cancer in their lifetime.


Thursday, October 16, 2014
This weekend, thousands of runners will pound the pavements of Birmingham during the Birmingham BUPA Great Birmingham Run. As well as marking one year since Burton Mail reporter Rob Smyth took on the challenge for Cure Leukaemia, it also marks one year since I received the phone call to say I needed to make my way to hospital to start the treatment in preparation for a bone marrow transplant. 

Wednesday, October 15, 2014
I'm suffering with a very sore mouth today. I'm partly blaming the food I have eaten today coupled with the general weakness of the flesh in my mouth. As it now feels like I have eaten a bowl of grit and brushed my teeth with sandpaper, it's going to take a while to return to normal. This is just another of the complications you face post-transplant. 

Tuesday, October 14, 2014
An appointment with a chest consultant has now been finalised for November.
Or it had until I discovered the date I have been given is one I cannot make. Thankfully I've managed to rearrange the slot but it means its going to be two weeks later than initially planned. It's a good job my breathing has improved recently.


Monday, October 13, 2014
The final menus, times and venues are starting to arrive for the various award ceremonies I have coming up before the end of the month. It's all starting to feel very real and quite scary.
I really appreciate the recognition I am receiving but these award ceremonies leave me feeling a bag of nerves.

Sunday, October 12, 2014
I was out supporting a couple of charity events today by photographing the bikers taking part. First on the agenda was a charity ride in aid of Birmingham Children's Hospital while the second event was in aid of Children in Need.
As a result of our photos, we've now also raised more than £50 for the blood cancer charities I support.


Saturday, October 11, 2014
Recent press reports on me have resulted in a resident from Matlock sending me a charity donation. It's so heart-warming to receive a hand-written letter of goodwill and a donation from a complete stranger who has been touched by my story. I'm adding the donation to the money I collected throughout September for Leukaemia CARE as part of Blood Cancer Awareness Month. Thank you.

Friday, October 10, 2014
My breathing problem returned today - just when I thought it had subsided and cleared.
I've also had to call the doctors today for an emergency repeat prescription as it suddenly dawned on me I was running very low on some specialist cream - thankfully everything has been sorted quickly and easily.

Thursday, October 9, 2014
My official invitation for the Anthony Nolan awards ceremony to be held at the Houses of Parliament has now arrived. Plus I saw my name in the hospital newsletter yesterday for the QEHB 'best in care' awards. With three ceremonies to attend in an eight day period later this month, this is the calm before the storm

Wednesday, October 8, 2014
I was back at the hospital today for a routine appointment.
Everything is going well and the consultant is happy with my blood results.
As my breathing problem has improved immensely this week, it looks as though my appointment with the chest specialist will now be held in November.


Tuesday, October 7, 2014
Has the temperature dropped rapidly or am I starting to feel the cold more than I did before my life turned upside down? The good news is that my experience with leukaemia was publicised by the charity Leukaemia CARE during blood Cancer Awareness Month and now various people want to speak to me with regards to maybe publicising it further. We'll see what develops in the coming weeks.

Monday, October 6, 2014
The news has been full of stories on how the flu vaccine is being given to children.
This is going to be a nightmare for me as the nasal spray vaccine being used is classed as a 'live' vaccine. Anyone who has had a live vaccine recently is a serious threat to me and so I'm facing a problematic winter unless I cocoon myself indoors.


Sunday, October 5, 2014
As both the blood bank and Anthony Nolan issue an appeal for more donors to come forward from Burton, it shows that there is still a massive need for more education and awareness in the area. I am working towards the day when these organisations don't have to beg us any more as we adopt the donating attitude.


Saturday, October 4, 2014
I turned out in the awful weather conditions to show my support to the bikers attending Ride to the Wall today. Following our ride in March, we've got to know many new biker friends and today was a chance to support them. We've built up somewhat of a reputation over the months for photographing biking events and Ride to the Wall broke new records for us as we took more than 9,300 photos of the event.


Friday, October 3, 2014

When you've had cancer, you begin to celebrate mundane achievements.
Mine today is that I have used a hair drier for the first time in 18 months - until now I've never had enough hair to worry about but the 'chemo curls' are growing thick and fast.
This is the norm for you - it's an achievement for me.


Thursday, October 2, 2014

Today I've been mingling with former England football player Geoff Thomas as he launched a major fund-raising initiative to benefit the charity Cure Leukaemia.
He spent the morning in London briefing the national press and television before heading to Birmingham for the main launch event in which I was featured.
It was a pleasure to meet Geoff and I am honoured to have been asked to take part in the launch event.






Wednesday, October 1, 2014

Blood Cancer Awareness Month is now over and it's been a phenomenal success.
I received a really touching email today from the charity Leukaemia CARE thanking me for  my key role within the week which has reached five million people. That is five million extra people who now know the signs and symptoms of blood cancer.


Tuesday, September, 30, 2014

As the one-year anniversary of my stem cell transplant approaches, it's time to start planning for the next stage of my treatment. Having a transplant completely wipes away every vaccine you have had in your life, and so from the one year anniversary, I have to start being re-immunised. I hope the side-effects are minimal as I have a lot of injections to endure.  

Monday, September 29, 2014

My course of super-strength antibiotics finished today for my breathing problem. I'd like to say they had made a huge difference but I'm not sure of the impact they have had. The next few days are going to be a key test as to their effectiveness.

Sunday, September 28, 2014

My breathing has been fine all day until it was time to climb the stairs for bed.
The inconsistency of this breathlessness points me in the direction of lung scars caused by the intensive chemo and radiotherapy endured last year. If it was an infection, this breathing problem would be more consistent all day every day. 


Saturday, September 27, 2014

Whenever I receive an envelope marked the House of Commons I am always slightly excited as to its contents.
Today's letter was from Burton's MP Andrew Griffiths congratulating me on my Anthony Nolan award nomination. I extend my congratulations to Mr Griffiths as he too is nominated for an award for his help with my campaign.




Friday, September 26, 2014
My breathing problem has returned to its usual self after a few days showing some improvement. My antibiotics run out this weekend too which goes someway into showing this is maybe something other than a viral infection.


Thursday, September 25, 2014

As Blood Cancer Awareness Month is drawing to a close, I hope that people have paid attention to the information which has been made available through the media and social networks.
Thinking 'it will never happen to me' is not an option. I never thought it would happen to me either and my cancer was diagnosed late. Do you really want to follow in my footsteps? 

Wednesday, September 24, 2014

In the past few days my breathing appears to have improved. I still pin one theory on that the weather plays a pivotal role and as the temperature has dropped a few degrees this week, my breathing has eased. As I slowly come to the end of my course of antibiotics, I hope this there is some truth in this theory.

Tuesday, September, 23, 2014

My latest award nomination is now public and I'd like to thank everyone for their continued support. It's clear October is going to be a very busy month as I have two award ceremonies and a charity meal to attend within the space of eight days - two in Birmingham and one in London. Hopefully November will be a little quieter. 

Monday, September 22, 2014

Today was World Chronic Myeloid Leukaemia Awareness Day. Did you know or has the event passed you by without you knowing any more about leukaemia?
If it's the latter, my aim is to change this. I've just launched a new social media campaign which I hope will get people thinking more about blood cancer,

Sunday, September 21, 2014

I'm always keen to support those who have support me and today it was the loyal band of bikers we know as they went on their shoebox run to the National Memorial Arboretum.
We're getting to know more and more new faces and so I expect our next motorcycle fund-raiser to double its numbers.


Saturday, September 20, 2014

We started the day in London as I was really keen to watch and photograph the Great Gorilla Run where runners complete a fun run dressed head to toe in a gorilla suit. The day went to plan but my breathing was particularly troublesome first thing. Two minutes out of the hotel and I was seriously out of puff.

Friday, September 19, 2014
I received a surprise sackful of stamps today from the people of Ashbourne.
These stamps will help bolster my continuing efforts to raise money for the charity Leukaemia CARE. Health-wise, I'm still waiting for my appointment letter to see the lung specialist so my breathing remains pretty much the same - troublesome.  





Thursday, September 18, 2014

I've been working on a fund-raising project which will hopefully grip people's attention and spread viral. Wouldn't it be great if I could start a fund-raising project which became as successful as the ice bucket challenge. Only time will tell but I'm hopeful. 

Wednesday, September 17, 2014

It was back to the hospital today and the results from my recent lung tests show no improvement since I've been on specialist medication. The tests also show my breathing has deteriorated since my transplant in October.
This could be caused by one of three things - GVHD, where my new cells are attacking my body; a viral infection; or damage caused through intensive chemo and radiotherapy.
I'm being referred to a specialist chest doctor who will no doubt want to carry out an internal lung examination known as a bronchoscopy. 


Tuesday, September 16, 2014

It's back to the hospital again tomorrow. I'm hoping they have some conclusive results from my latest CT scan and lung function test as my breathing is still not sorted. As blood cancer awareness month presses on, can I remind everyone I'm still selling charity ribbons for Leukaemia CARE. 

Monday, September 15, 2014

I'm starting to dread going to bed as my nights are currently awful. Aside from being awake until 3am I have bouts of night sweats, nausea and restlessness. I'm blaming these problems on my bedtime cocktail of drugs. 

Sunday, September 14, 2014

As Blood Cancer Awareness month continues, you may have heard a radio clip from me today if you listen to Heart FM. The station spoke to me about the signs and symptoms of leukaemia as many people don't know what to look for. I hope every bit of media coverage I receive helps in some way save more lives.

Saturday, September 13, 2014

I ventured out today and was recognised many times by people who follow my diary. One of those who stopped to chat was one of the first consultants I had when first diagnosed at the Queen's Hospital. I was amazed he remembered me as I haven't been to the Queen's for almost 18 months and he must see hundreds of patients. It's days like today which reveal just how many people follow my daily trials and tribulations. 

Friday, September 12, 2014

The regional Pride of Britain finalists were revealed today. I'm not going through to the London finals but I am extremely proud of how far I have come having already beat off thousands of nominations. I'm thrilled for those going through to the London finals and I'm pleased that my video on the news will have helped to further raise awareness.
http://www.itv.com/news/central/search/?q=Pride+of+britain



Thursday, September 11, 2014

Did you catch me on the ITV Central News tonight? I missed it too as I'm featured on the East Midlands bulletin rather than the West Midlands version which we receive in Burton.
My fingers are crossed now for tomorrow when the grand finalists are revealed.
Link to video on ITV website:

Wednesday, September 10, 2014
My work and support for Blood Cancer Awareness Month is spreading and being recognised as the phone and email has been very busy today. I've also been sorting out my various donor recruitment plans as well as trying to sort confirmations for three very keen runners wishing to run the London Marathon in my name,

Tuesday, September 9, 2014

A few days ago, a national newspaper article discussed stem cell donation.
The reader comments linked to this story have left me appalled as they spread fear and misguided beliefs that becoming a donor is painful and requires an operation. Neither is true. Until we improve overall donor education, my campaign will continue to grow.


I hope you have been tuning into ITV Central News this week? I haven't appeared yet but you will have seen two of the other nominees in my category. 


Monday, September 8, 2014

I want to say a big thank you to the anonymous donor who posted me an envelope of foreign stamps for my Leukaemia CARE collection. Your donation means a lot to me and the charity.
I haven't received a telephone call from the hospital which helps me to believe that my test results from Friday must be acceptable. 


Don't forget to tune into the ITV Central News (6pm) every night this week as my Pride of Britain Award nomination video will be broadcast.


Sunday, September 7, 2014

I spent a few hours in Birmingham today - not at the hospital but supporting a cancer charity.
I volunteered to help take the photographs of a motorcycle ride for the Neuroblastoma Children's Cancer Alliance (NCCA) as they completed the final stage of a ride which has seen them travel between England, Scotland, Northern Ireland and Wales in a week-long tour.


Saturday, September 6 2014

I didn't receive a call from the hospital yesterday following my tests so I am hoping this means nothing unexpected was discovered. Today I started to retake some of the tablets I stopped as a precaution a week or so ago. I feel better mentally knowing that I am back on medication - I feel vulnerable without it.

Friday, September 5, 2014

It was back to the hospital today for more lung tests as I continue to experience breathing problems. Today was a lung function test (blowing into a computer) and a CT scan - my second CT scan in a month. And when I returned home, the postman had delivered yet more hospital appointment letters for the coming weeks.

Thursday, September 4, 2014

I have to return to the hospital first thing tomorrow for two more tests on my lungs.
A lung function test and a CT scan. It's hard not to get nervous about the results especially as my breathing appears to have taken a step backwards again. 
I don't know if I will get the results tomorrow or at my next appointment - or if I'll just get a telephone call when I least expect it from the hospital.

Wednesday, September 3, 2014

It was back to the hospital today for another check-up as my lungs are causing concern.
Everything appears to be okay but we still need the results of some tests to make sure it is what they hope it is.
News of me making the shortlist for the Pride of Britain Awards has already spread around the hospital - I feel like a celebrity and I haven't won anything yet.


Tuesday, September 2, 2014

It's back to the hospital again tomorrow as they are keen to keep an eye on my lungs.
I feel that my tablets have started to make a difference and so I'm hopeful that they are pleased with my progress. Next Wednesday we're back at the hospital again for a lung function test.


Monday, September 1, 2014

I've had one of my worst days for many months today. An excruciating headache coupled with nausea which simply left me unable to do anything. I'm not sure if it is down to my new tablets or if it's just coincidence. I don't want a day like this again for a while. 

Sunday, August 31, 2014

Tomorrow marks the start of Blood Cancer Awareness Month and the message is quite simple - would you be able to spot the signs? Spotting leukaemia early is vital to increasing survival rates - please just make sure you're aware of the symptoms before it's too late. 

Saturday, August 30, 2014

News of my Pride of Britain Award nomination is now public - I hope you're as excited as I am? I'd have loved to have revealed the news earlier but my latest stay in hospital hampered the filming somewhat. I've had loads of good luck messages today - thank you.
It's now a waiting game to see what happens next.

Friday, August 29, 2014

The tablets appear to be working to fix my breathing difficulties. There has been a noticeable difference in the past 24 hours which is a huge relief.
It's Blood Cancer Awareness Month in September and therefore I have been busy preparing some awareness and fund-raising initiatives.


Thursday, August 28, 2014

Today would have been my sister-in-law's birthday. She died in 2011 from breast and bone cancer aged 34 - the same age as I am now.
While ever there are cases such as this, the need for improved research and cutting-edge drugs continues and so does my determination to help raise the money to help fund this need.


Wednesday, August 27, 2014

It's time to celebrate. A few months ago, my bone marrow biopsy showed I had 0.004 per cent leukaemia in my body. My latest bone marrow test has come back as zero - zilch - nought.
For the first time in an unknown number of years, I am leukaemia free.
I now just need to sort this breathing problem. I have another CT scan and lung function tests on the horizon in the coming weeks.


Tuesday, August 26, 2014

My first full day back at home has had to be a day of rest as I'm still short of breath and my energy levels are low.
I've started my new regime of anti-fungal drugs and so far they are going okay - the list of side-effects is astonishing but they do say they are for 'life-threatening conditions'.


Monday, August 25, 2014

It may have been a wet and dismal bank holiday for most people, but it has been a joyful day for me as I was discharged from hospital. I'm returning again on Wednesday for another check-up and probably more tests but at least I'm home now. Armed with a bag full of new pills to go alongside my usual cocktail. 

Sunday, August 24, 2014

I'm still quite breathless but my temperature and blood pressure have stabilised. After speaking to the doctors today, I am still confident that I will be home within the next day or two.
My treatment will then continue for months in tablet form rather than intravenously.


Saturday, August 23, 2014

I'm still undergoing treatment in hospital but things appear to be going ok. I had a slight temperature spike and some low blood pressure tests today but both have now stabilised.
It feels strange in that everybody knows me here - news of my campaigns and achievements must spread far and wide as all the staff knows snippets of news about me.


Friday, August 22, 2014

My treatment is in full swing now as I have a mixture of intravenous and tablet-form drugs as well as those painful stomach injections.
I'm being treated for both fungal and bacterial infections as I have a form of pneumonia.
Everyone is still hopeful that I will be home early next week if my results continue to improve.


Thursday, August 21, 2014

Finding a bed at the hospital took a little longer than usual but I'm now back in my usual ward.
For the next few days I will have a multitude of anti-fungal and antibiotic drips alongside a fairly continuous supply of tablets. I'm still hopeful of being home by Monday.


Wednesday, August 20, 2014

My bone marrow biopsy results are still not ready so I don't have any further news on that front.
The bad news however is that following my hospital appointment and an emergency CT scan today, I am ending the day with news that I will be re-admitted to hospital.
Fluid on both lungs looks like a fungal infection.
I'm upset at having to be re-admitted but at the same time I need to get better.


Tuesday, August 19, 2014

I'm slightly worried about the hospital tomorrow as I can never second guess the results. 
However, at the same time I need to get my breathing problem checked before it escalates or causes further problems. I can't wait to be home again tomorrow with some good results under my belt.

Monday, August 18, 2014

My breathing is like a yo-yo. Today it has drastically improved to how it has been over the weekend. Whatever the underlying cause may be, it is something which comes and goes. Thankfully that rules out chest infections and other nasties but could point to conditions such as asthma. 

Sunday, August 17, 2014

My breathing remains problematic - it's a good job I don't have to climb too many stairs on a daily basis. Apart from my breathing I feel well without too many other grumbles. I'll be happier once I've been checked over on Wednesday and once I have the results of my latest bone marrow biopsy. 

Saturday, August 16, 2014

My breathing problem has resurrected itself this weekend. I am increasingly breathless and walking upstairs is the equivalent of climbing Everest. Thankfully I'm back at the hospital on Wednesday. No doubt this will be followed by numerous x-rays and tests.

Friday, August 15, 2014

Today it was confirmed that I can help Anthony Nolan monitor a new online forum it has created for bone marrow transplant patients. This voluntary role just requires me to log on to the forum when I can and help police the posts and stimulate new discussions. I’m hopeful it will be good for me and the users of the forum.

Thursday, August 14, 2014

I have to say a huge thanks to the kind readers who continue to send me their used stamps. Over the past couple of days, I have received a couple of bulk donations equating to a couple of kilos each - this is the same as sticking a bank note in a collection box, it really makes a difference.


To see earlier diary entries (dating back to April 2013) click on the 'older posts' link.

08/06/2014

The Pride of Burton

Thursday, August 14, 2014 - Diary update
If you logged on to my diary early this morning, you would have noticed a major shortage of entries. A technical glitch on the software I use to update this diary kindly decided to delete everything from June onwards. I'm hoping the diary is now fully restored thanks to me having to keep multiple copies of the daily entries. You may however notice that some of the links and photos which were once part of this page are missing. I'll try my best to remember what pictured appeared where and to update the page.
Technology can be amazing but it can also cause massive headaches.




Wednesday, August 13, 2014 - My birthday
It's exactly a year to the date since I was discharged from hospital after spending nearly eight weeks undergoing extensive chemotherapy.
A lot has happened in the past 12 months and although I suffer daily with one side effect or another, the difference in my health is remarkable.


Tuesday, August 12, 2014
Today Anthony Nolan released its 'be a better stranger' campaign to highlight how people are more likely to save a pet than the life of a stranger. This campaign came the same day as the announcement by a television actor that his mum needs a transplant. It's clear that the UK's donor numbers are poor and so my work will not only continue but will step up a gear.

Monday, August 11, 2014
My stamp campaign for the charity Leukaemia CARE continues to flourish and I have to thank all of the kind shop keepers and villagers around Burton and South Derbyshire who have been helping to publicise my campaign. Meanwhile, I'm now getting anxious to know the results of the bone marrow biopsy I had done a few weeks ago - I'm trying to believe no news is good news.

Sunday, August 10, 2014
This weekend I have been to Bristol to watch the city's annual hot air balloon fiesta (from the safety of our hotel room). I'm pleased to see that the fiesta this year is supporting the Above & Beyond Appeal at Bristol hospitals - which is important to me. 
Last year I needed bag after bag of blood and my doctors couldn't understand why - for the answer they called upon a team in Bristol. This is why I was keen to support the fiesta and the appeal, they work wonders for leukaemia and transplant patients.


Saturday, August 9, 2014
This time last year I was under sedation having plastic tubes forced down my throat as I underwent a bronchoscopy. Why is this important? Well August 9 is our wedding anniversary and it's events such as this which show the difference a year has made. Last year I wasn't in a fit state to celebrate anything.


Friday, August 8, 2014
My breathing has improved in the past couple of days but I still have a patch of eczema on my foot which is proving difficult to control. My main concern at the moment is still how to remain disease free as I still have a compromised immune system and there appears to be somebody coughing and spluttering around every corner.  

Thursday, August 7, 2014
As news of my recruitment drive between Anthony Nolan and Burton & South Derbyshire College is made public, I'm busy dealing with the feedback I'm receiving.
I'm fairly positive that this latest venture of mine is going to grow and grow and may even spread to other colleges and sixth forms in the area.
I just need to continue to press the Government now over the importance of widespread donor education in the post-16 curriculum. 




Wednesday, August 6, 2014
During the summer holidays please spare a thought for a seven-year-old Staffordshire boy called Joshua. His leukaemia means he won't be able to complete his summer homework which is writing about places he visits. Instead he is going to write about the postcards he receives from others. And so I will be sending him some postcards from my travels this summer - please do the same.

Tuesday, August 5, 2014
My breathlessness and cough returned today, but instead of this being down to the weather as it was last week, this episode was caused by over-exertion.
If I try and walk too far or up a steep incline, I'm drastically out of puff. Short distances with lots of rest is all I can manage nowadays.


Monday, August 4, 2014
The school holidays are proving a challenge for me this year. As my infection-risk radar is always on the lookout for the slightest cough or sneeze, I'm finding the sudden freedom of thousands of children a problem. Next time you're out, just stop and listen - you'd be amazed at how many people are coughing and sneezing - now try and avoid all of those potential hazards and you're in my shoes.

Sunday, August 3, 2014
It's Blood Cancer Awareness Month in September and so I am already throwing myself into thinking of ideas to help promote and support the event.
I've already achieved a little success in publicising the awareness week through Twitter thanks to a re-Tweet to thousands of followers by Debbie Magee.


Saturday, August 2, 2014
The recent rain has helped to clear the air and as a result, my breathing and breathlessness has improved. I'm a big fan of hot climates, I just don't like the breathing difficulties the heat now creates for me.

Friday, August 1, 2014
In March this year, I helped organise a charity motorcycle ride between Birmingham and Burton to raise money for three blood cancer charities. Well, the BONE-shaker MARROW-thon is returning again next year. Plans are already gathering speed for the ride pencilled in for Sunday, April 19th.
Visit: www.boneshaker-marrowthon.com for the latest




Thursday, July 31, 2014
I had an extremely productive meeting today with representatives from Anthony Nolan and Burton and South Derbyshire College.
Come September, the number of people on the bone marrow register in this area should start to climb. More details will be confirmed in the coming weeks.

Wednesday, July 30, 2014

It's my dad's birthday today. Rewind 12 months and I have memories of eating birthday cake at my hospital bedside as I was in the midst of my chemotherapy treatment. I would much rather be where I am now even if it does involve a handful of tablets every day and regular check-ups at the clinic. Let's wait to see the difference another 12 months makes.

Tuesday, July 29, 2014

My health remains about the same today - I'm still feeling a little breathless and not exactly 100 per cent. Do I need to see a doctor is the question or is it just the weather?
I'm pleased to say my stamp collection for Leukaemia CARE is gathering pace - another envelope was posted off to them today. 


Monday, July 28, 2014

I'm still a little breathless but I'm hoping it is weather-related.
A rash has also flared up on my feet but again I'm hoping this will soon disappear as I've started to use creams from my vast supplies.
I've got a few bits lined up with Anthony Nolan this week so hopefully there will be some news to report on my charity work in the coming weeks.


Sunday, July 27, 2014

I've not been firing on all cylinders today. I'm not sure if it's the heat and humidity, but I'm feeling quite breathless. I'm also struggling to sleep as a side-effect of my treatment, transplant and current medication is hot flushes - the last thing you need in this weather.

Saturday, July 26, 2014

I've been suffering with my tongue again over the past couple of days. Simple foods such as watercress leave me diving for a drink. Anything with even the tiniest hint of pepper or spice leaves me in agony. I thought things were improving but clearly not.

Friday, July 25, 2014

I've taken the first look at my latest bone marrow test wound today. Thankfully it all looks well. Most people probably don't think much of these wounds but if you remember, last year, one of mine became infected and resulted in me having weeks of visits by the district nurses and input from specialist skin doctors.

Thursday, July 24, 2014

Over the past couple of weeks I have been sending posters to the Post Offices in and around Burton to help boost my used stamp appeal for Leukaemia CARE.
The first returns started to arrive at the Burton Mail offices today and I'd like to thank everyone who is collecting and donating stamps as part of the appeal.





Wednesday, July 23, 2014

My three appointments within 24 hours at the hospital are over, and everything has gone well.
I was really worried about all of the appointments this time - worried about my blood results and worried about the painful bone marrow test I needed. Thankfully, my bloods are ok and the bone marrow test was bearable. As this was my tenth such test, I must be getting used to the experience - but my hip bone must look like Swiss cheese by now - full of holes.


Tuesday, July 22, 2014

Today marked the start of two busy days at the hospital with three appointments spread over just a 24 hour period. Today's appointment went okay, it was the journey to and from Birmingham which was the issue because of the A38 tunnel closures. Traffic jams in this heat don't mix and we will be hitting it at rush hour tomorrow.

Monday, July 21, 2014

My busy week of hospital visits begins tomorrow and it's hard not to feel anxious.
You can't avoid the knowledge that some of the procedures I am going to endure are some of the most painful you can experience - I am going to have a core sample of my hip bone taken with a sharp-toothed needle.
This will be my tenth such test and I am still very fearful as the pain is unbearable. 




Sunday, July 20, 2014

It's only been seven days since the end of National Transplant Week and already the NHS Blood and Transplant service has had to issue an urgent appeal for B- blood group donors.
The situation is so important, NHSBT will find you a donor session if you give them a call.
It's depressing to hear we are in such a critical state just a week after such a massive donor drive.


Saturday, July 19, 2014

Today we've had to turn the house upside down looking for tablets. I'm running low on some of my medication and I won't be re-ordering until my routine clinic appointment on Wednesday.
As I have to have little boxes of tablets in every handbag and car glovebox, it's been a treasure hunt finding the particular pills. Thankfully, I have just enough to last me - but if I drop one by accident, I might be in a mess.


Friday, July 18, 2014

I can't enjoy the sun as much as I used to, but it makes such a difference having nice weather. If you remember, this time last year I had already spent 26 days in Birmingham hospital and 11 days in Burton. You can appreciate why I am enjoying the weather this year, as last year, I was confined to that same ward until August 13. 




Thursday, July 17, 2014

I had a letter today from the Department of Health as I continue to press them into trying to encourage more stem cell donors to join the Anthony Nolan and NHSBT registers.
The Government reassures me that it has invested an extra £16m over the past four years into NHS stem cell services - for which I am grateful - so why is there such a shortage of donors?
This is an issue money doesn't fix. This is an education and social issue which needs addressing at a young age to encourage future generations to donate as the norm.

Wednesday, July 16, 2014

Regular readers will be aware of the various campaigns and fund-raising challenges I have locally - and now I am helping out abroad too.
A few weeks ago I was contacted by somebody in Sri Lanka. A few dozen emails and messages later and I've now sent some literature overseas to help them with their project.
If you hear on the news in the next 12 months of a big leukaemia charity and bone marrow charity forming in Sri Lanka - you know it had some help from Burton.

Tuesday, July 15, 2014

My skin is proving to be  troublesome again. Today a rash developed on my wrist which caused some concern - but then it had completely vanished again within an hour.
Meanwhile, I'm giving my used stamp collection a fresh kick-start by displaying appeal posters in some Post Office branches - keep your eyes peeled for a poster and keep saving those stamps.


Monday, July 14, 2014

Cramp is still an issue in my toes. It's such a weird place to have cramp and it's becoming an almost daily occurrence - it's something to mention to the doctors at my next visit I think.
Social media is proving useful again as a child in urgent need of a transplant now has a matching donor thanks to Anthony Nolan. Social media has played a huge role in this case.

Sunday, July 13, 2014

The rash on my feet continues to irritate me and now I've noticed some patches of dry skin on my legs. It's almost an impossible task to know if these skin problems are caused by 1) GvHD, 2) the sun or 3) my medication. Thankfully, the numerous creams I have in my supply cupboard are keeping it under control 

Saturday, July 12, 2014

The postman delivered me a nice batch of letters from the hospital today. It looks as though I will be a regular visitor to Birmingham over the next few weeks - just as the main A38 tunnels close again for summer work. 

Friday, July 11, 2014

I've heard some terrible news today which has knocked me back emotionally.
An 18-year-old girl I have been following died today - she was in hospital the same time as me last summer and had her stem cell transplant a month after I had mine.
Anyone who thinks leukaemia has an easy fix is completely wrong. I'm absolutely gutted.

Thursday, July 10, 2014

It's been a day of niggling problems today. I keep getting bouts of intense cramp - but only in my toes. My tongue has also been much more sensitive today than usual with normal toothpaste resembling acid. On top of that, I still have a rash on my feet which I believe to be GvHD.

Wednesday, July 9, 2014

We're now mid-way through National Transplant Week and it's pleasing to see that it is gaining more and more media coverage as the week progresses.
The figures are shocking - 1,000 people died last year in the UK waiting for a transplant and from those on the register, four in ten families would refuse to allow organs to be donated.
I think we need a National Transplant Week every week to reverse these figures.




Tuesday, July 8, 2014

Work continues behind the scenes as I make progress on some of the ideas I have for increasing donor levels. Change doesn't happen overnight, but it is always based on solid groundwork and that is what I am working on now.
Today also marks 10 years since we moved into our house in Burton and I'd like to thank readers for their continued support and encouragement.

Monday, July 7, 2014

My social media presence is growing as I'm now on one of Twitter's 'top patient advocate' lists.
I wasn't on Facebook or Twitter before leukaemia but now it is proving to be a very useful way of spreading the word and raising awareness.
A couple of days ago I mentioned a Sri Lankan seeking my help - I've now had further discussions with this man and I'm sending him some information and leaflets as he attempts to  start up his own leukaemia charity in that country.



Sunday, July 6, 2014

Tomorrow marks the start of National Transplant Week. It's time to think about what you would do if you needed an organ transplant - without donors, you would die.
This week, sign up and make sure you spell it out to your family. 

Saturday, July 5, 2014
I've noticed a small rash appearing on my ankles - and I'm almost certain that this is probably GvHD. That's the visible signs of my new German donor cells and my body fighting with each other. In small doses, GvHD is good news, however, it can become very nasty so I am hoping that it stays just as a small rash.


Friday, July 4, 2014
My story and fight to raise awareness must be going global.
I was suspicious at first when I received a message from a foreign country - I was expecting the usual 'send us your bank details and pin number' con.
However, this message is genuine. Apparently, Sri Lanka doesn't have any organisations raising awareness of leukaemia or hunting for bone marrow donors. In a heartfelt message, my follower is asking if I can go across and help start the ball rolling.

Thursday, July 3, 2014
Did you catch the Tonight programme on ITV today?
The main emphasis of the debate was on growing rates of breast cancer.
However, it also featured the work of Kris Hallenga who is campaigning to get cancer education into schools - I'm working on something similar too.
My question is how many people campaigning does it take to make the Government take this education issue seriously? 


Wednesday, July 2, 2014

Celebrities - and especially footballers - very rarely get a mention in my diary.
He may be a love-hate figure, but Christiano Ronaldo is in my love list right now. Why?
Because he refuses to have a tattoo as it will impact on his frequency to give blood. He is also on the bone marrow register.
Speaking to a Spanish radio station, Ronaldo said: "Donating bone marrow is something a lot of people think is a difficult thing to do but it's nothing more than drawing blood and doesn't hurt.”  I wish more footballers would follow in the footsteps of Ronaldo.


Tuesday, July 1, 2014

Social media has its good and bad points when you're recovering from leukaemia.
Firstly, some of the forums and support pages can be extremely useful. I learn a lot about other forms of leukaemia and the treatments available on these pages.
The downside is that you hear about many of the people you follow returning to hospital for various problems - this news isn't good for my anxiety levels.


Monday, June 30, 2014

Tomorrow - July 1 - marks a rare day for me. Rewind 12 months and I didn't see one glimpse of the outside world in July 2013. I didn't breathe one lungful of fresh July air as I spent every single waking hour in ward 625 at the Queen Elizabeth Hospital in Birmingham undergoing intensive chemotherapy.



Sunday, June 29, 2014
Following our meeting yesterday with the Anthony Nolan charity, I have started work straight away on some ideas and letters will be in the post tomorrow. It's too early to reveal exact details of plans but it revolves around my key belief that education is key to increasing donor levels.

Saturday, June 28, 2014

Today we had a very productive three-hour meeting with a representative from the charity Anthony Nolan. We learned lots about the charity while they listened to our ideas for increasing donor levels - not only locally, but nationally. There are some big ideas in the pipeline which may take months to come to fruition but could have a massive impact. It’s going to be a busy few months but this extra effort could help to save many more lives.

Friday, June 27, 2014
The pain and tingling in my scalp is very much intermittent which has helped convinced me that this cannot be a return of shingles. When I had this problem earlier in the year, the pain then was very much continuous. I'm more hopeful now that this is just a blip rather than a repeat of the illness which saves me from having to spend another week in hospital.

Thursday, June 26, 2014

I am still suffering with the occasional bout of pain and tingling in my scalp.
It's very uncommon to have shingles more than once, so I believe my pain is linked to a nerve problem called Postherpetic neuralgia which can be a common post-shingles problem.

Wednesday, June 25, 2014

I had to visit the hospital today for an unscheduled visit. A tingling sensation in my scalp had started to cause me concern, but has since improved. Blood tests and examinations  at the hospital today proved promising and so no further action is needed at this time.
The bad news is that I am now booked in for another bone marrow test next month.

Tuesday, June 24, 2014
I had to resort to contacting the hospital for advice today. I'm starting to get a tingling sensation in my scalp - a sensation all too familiar from when I had shingles in March.
I'm now booked in at the hospital first thing tomorrow for a check-up. I'm really hoping that it can just be a simple case of taking some tablets which I already have in stock at home.
I don't want another outbreak of shingles as last time I spent five days in hospital.


Monday, June 23, 2014
Today the news was revealed that the Prime Minister David Cameron is supporting me and the 'Take Five Minutes' campaign. I have read some of the comments on the online version of the story which have started to turn this into a political argument.
My view is that blood cancer kills. We need more donors, and anyone pledging their support deserves credit - what political party they support or represent is irrelevant. I'm more interested in their stem cells.


Sunday, June 22, 2014
I received a message from one of my Twitter followers today asking if I could help promote the hunt for a bone marrow donor for a 10-year-old boy.
My answer, yes, without question. When I started my diary and began publicising my fight with leukaemia, I did it for the benefit of everyone. Please, wherever you are, sign-up, spit and help save the life of Sam Wright. Imagine if this was your child fighting against time.


Saturday, June 21, 2014
With England out of the World Cup I have had to resort to cheering for my second team - Germany - the same as my donor.
As the weather continues to impress, I'm having to be more careful than usual about the sun and about keeping hydrated. I never go anywhere now without a bottle of water close by.


Friday, June 20, 2014

I'm still suffering with sleepness nights through various aches and pains. While the weather is good, i have the urge to get up and do something but find that my lack of rest in the night puts an end to such thoughts in the morning. Things are slowly improving but it will be a long road.

Thursday, June 19, 2014

Firstly, I need to thank the readers who have started to deliver batches of stamps to the Burton Mail office. No sooner had a box been prepared to post to Leukaemia CARE that another bagful arrived.
Secondly, it's been another very promising day with regards to my campaign to increase bone marrow donor levels. There are lots of emails and letters flying around and hopefully it won't be long before I can report on some positive actions.


Wednesday, June 18, 2014
My ongoing campaign to increase the number of potential bone marrow donors has stepped up a gear following the mention in Parliament by MP Andrew Griffiths.
Today I've exchanged thoughts and ideas with the charity Anthony Nolan and face to face meetings with some of their team have now been planned for the next few weeks. Things are moving in the right direction so I hope that these ideas result in a positive outcome.


Tuesday, June 17, 2014
I was mentioned in parliament today. This 'Take Five Minutes' diary, the Burton Mail newspaper and I were all mentioned and praised by MP Andrew Griffiths as he spoke about the need to increase donor levels. This marks a first for me, but it's nice to receive some recognition.


Monday, June 16, 2014

For this World Cup I have split loyalties. In today's match between Germany and Portugal I was an ardent supporter of our former enemy - Germany.
I have to have split loyalties nowadays as it was a mystery German lady who saved my life. I don't know her name, her age or where she is from. She may have been in the crowd in Brazil or she may even be married to one of the players, who knows?


Sunday, June 15, 2014
After what has felt like an eternity, I feel that some of the pain and discomfort I have been suffering as a result of some side effects is starting to subside. They haven't gone, it's just that they are less frequent, less intense and more manageable

Saturday, June 14, 2014

It's funny how people will throw themselves into anything for charity. A tweet from a charity close to my heart - Cure Leukaemia - mentioned the prospect of skydiving and now my husband Stephen appears to be setting his sights on jumping out of a plane. Watch this space.

Friday, June 13, 2014

I've been working on my action plan as to how I can help increase the number of potential bone marrow donors in the Burton and Uttoxeter constituency.
So far I've written to MP Andrew Griffiths to raise my concerns and have started to write to sixth forms and colleges with regards to a suggestion I have in mind.

Thursday, June 12, 2014

It's been a day of doctors and pharmacies today as it came apparent that I was running low on some of the medications I am taking for my ongoing side-effects. I also needed to restock on powerful painkillers to help keep me sane from the discomfort. Thankfully everything worked to plan and the stock cupboard is now refilled.

Wednesday, June 11, 2014

My various side-effects continue to cause me bouts of pain and discomfort but I'm trying to put them to the back of my mind. The first initial steps have now been taken to rectify Burton's low ranking in the Anthony Nolan donor league-table. I have many ideas, and with the right support and help, we can turn the figure around quite easily.

Tuesday, June 10, 2014

Figures released by Anthony Nolan over the weekend show that the constituency of Burton and Uttoxeter is quite close to the bottom of the list when it comes to the number of potential bone marrow donors registered - we're ranked 515 out of 650 constituencies.
I'm not overly impressed by the figure and so I'm setting myself the mountainous task of getting Burton into the top 100 as soon as possible - be it six months or a year.
I want to put Burton on the map but I need your help - sign up.

Monday, June 9, 2014
As I'm still struggling with pain and discomfort linked to one of my transplant side-effects, I am becoming a regular visitor at the hospital again.
This time I'm getting to grips with new doctors and new departments as it's not a haematology issue. I already have my next appointment booked in July which shows they keep a very close eye on my compaints.


Sunday, June 8, 2014

Thankfully, the sunburn I suffered yesterday has settled nicely and hasn't caused me any further problems.
I am hoping that many of you stayed up late today to watch the amazing documentary 'Dying to Live'. The film shows what positives can be achieved when faced with a terminal diagnosis. Positives can be achieved through cancer if you try.



Saturday, June 7, 2014

While some places suffered with torrential thunderstorms, others basked in boiling sun.
On my travels today I was lucky in one way to find the sun, but unlucky in another that I have now have sunburn. My medication makes me very prone to burning, plus sunburn can trigger skin-related GvHD. 


Friday, June 6, 2014

The medications I collected this week appear to be making tiny steps of progress but I am still suffering occasional bouts of pain and discomfort. 
On the positive side, today I received some more facts and figures from LeukaemiaCARE, the charity which I support through the used stamp collection. So far, the amount of stamps donated to them through the appeal is a whopping 150kg.

Tonight was awards night. It was the 101 Touch FM Pride of Burton Awards at the very posh Branston Golf and Country Club.
I didn't win the category in which I was nominated. Instead the organisers revealed they had some very special awards which came as a surprise to everyone.


And it is one of these that I came home with. After a very thorough introduction, I walked on stage to a standing ovation. I am so pleased.

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