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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.

https://www.facebook.com/media/set/?set=a.10152424488834020.1073741834.342860419019&type=1