Thursday, June 5, 2014
Wednesday, June 4, 2014
I have had bouts of excruciating pain today followed by long periods of agony.
Unfortunately, my bouts of pain continue. I'm hoping that the bag of goodies I left the pharmacy with on Tuesday start to kick into action soon. The most unfortunate aspect to my recovery is that I never appear to be free of one ailment or another. Last week I was battling the result of days of sickness and now this week I'm in pain. What will next week bring?
It's just 24 hours now until the 101 Touch FM 'Pride of Burton' awards. Wish me luck and remember if you use Twitter, use the hashtag #PrideofBurton in your Tweets.
What problems I had before have been made 10 times worse by the doctors having to prod and poke to determine what to do next. They had to do what they did to assess me correctly, it's just that I am living with the consequences today.
This Friday it is the Pride of Burton Awards. Thankfully the venue has been really helpful with my menu requests and I am having my meat cooked different to everyone else and they have arranged for an alternative starter for me - I'm playing safe and opting for melon.
I've now seen a photograph of the actual award trophies and they look very impressive - it's a metallic sculpture shaped like a star as in the Pride of Burton logo.
Tuesday, June 3, 2014
Monday, June 2, 2014
Sunday, June 1, 2014
It's amazing how much can change in such a short space of time. Two weeks ago I was feeling great, this time last week I was feeling absolutely awful and now I am back to normal again.
Thankfully these blips - which are likely to be quite common - are just the inevitable consequences of the treatment I have received rather than anything linked to leukaemia.
Saturday, May 31, 2014
Friday, May 30, 2014
As my tablets are waiting at the pharmacy in Birmingham, I had to get family to travel over and collect my potassium pills. Thankfully, my sickness problems have now gone and I am able to think about getting back to normal again. Hopefully these new pills help in some way.
Thursday, May 29, 2014
It's reassuring to know that when I leave hospital, my file isn't just placed in a pile until my next visit. Today I had a telephone call to say that after further analysis of my blood tests, I need to collect a prescription of slow-release potassium. This is clearly to replace the minerals and salts I have lost over the past week.
My problem now is to work out how I am going to get the tablets from Birmingham before the weekend when everyone is out at work?
Wednesday, May 28, 2014
I was back at the hospital today for my regular MoT test. My blood tests show that the leukaemia is still in remission which is good news. However, the lymphocyte levels in my blood are quite low which shows I have been fighting an infection. But because these levels are low, it means this gastroenteritis I am still fighting is taking much longer to shift.
As usual, I left hospital with a bag full of tablets to keep me healthy.
We're back at the hospital again on Tuesday so that more specialists can inspect me.
Tuesday, May 27, 2014
I may have finally turned the corner with this mystery illness which has been running me down since last Wednesday. Thankfully, it's back to the hospital tomorrow so I can speak to the doctors, and if there's anything else nasty waiting in the wings, my extensive blood tests should find it.
Monday, May 26, 2014
Very much like the rest of Burton, I watched in hope that the Brewers would clinch victory at Wembley today. The final whistle left me deflated, but so did the knowledge that this annoying illness I have had since Wednesday last week is very much like a boomerang - it keeps coming back when I think I have thrown it off.
Sunday, May 25, 2014
I have been ill on-and-off since Wednesday, but I feel I may have at last turned a corner.
I'm starting to see and feel improvements which fills me with confidence. My stomach occasional churns around like a cement mixer but overall I think I am on the mend.
Saturday, May 24, 2014
Unfortunately, I'm still not well. I've been hopeful all along that this is the result of something I have eaten or a bug which is doing the rounds, but so far, I can't shake it off. As I have had a transplant, this could also be a Graft versus Host Disease symptom - I'd prefer it to be food poisoning given the option. We're edging closer to the time when I need to contact the hospital again for advice.
Friday, May 23, 2014
For the time being, I am monitoring my health at home with the knowledge that I have a 24-hour telephone number for my old ward should things get worse. I know for certain that one telephone call to my ward would see me back in Birmingham within hours
Thursday, May 22, 2014
After being struck down with a mystery sickness bout
yesterday, I am slowly recovering.
I don't feel 100 per cent, but the good news is that I haven't been sick
again today.
If there is a reason behind it, I'm hopeful that it is a bad meal or a 24-hour bug rather than anything else or anything to do with my tablets as the latter are far harder to deal with than just a one-off dose of food poisoning.
If there is a reason behind it, I'm hopeful that it is a bad meal or a 24-hour bug rather than anything else or anything to do with my tablets as the latter are far harder to deal with than just a one-off dose of food poisoning.
Wednesday, May 21, 2014
Whatever the cause, I hope it is short-lived.
Did you catch The One Show on BBC1 tonight? There was a feature on the work of a volunteer Anthony Nolan stem cell courier.
Below is the clip featuring Anthony Nolan plus I have included some extra YouTube videos on the same subject.
Tuesday, May 20, 2014
Monday, May 19, 2014
The good news so far is that I managed a weekend of sun
without suffering too many side-effects. The good weather has been a test for
me to see what I can do without suffering.
I have to be careful nowadays because the tablets I take make your skin more sensitive to the sun and if I'm not careful, I will fry myself without realising.
I have to be careful nowadays because the tablets I take make your skin more sensitive to the sun and if I'm not careful, I will fry myself without realising.
Sunday, May 18, 2014
I'm not a regular listener to Radio 4 but today I tuned
in to hear a special broadcast by actress Olivia Colman who was appealing on
behalf of Anthony Nolan.
I support Anthony Nolan because they saved my life.
Olivia Colman put it bluntly why you should support the charity.
In the UK, 1,800 people need a bone marrow transplant
every year. Anthony Nolan manages to help around three of these people every
day.
For every person Anthony Nolan helps, there is one they
cannot help. You could be that person one day that they cannot help.
Listen to the appeal here: CLICK HERE
Saturday, May 17, 2014
I was very brave today and ventured to the Moira Canal Festival. I had to be on my guard at all times trying to dart away from anyone with a cough or sneeze while also trying to avoid the sun but it was nice to get out and about. It was also pleasing to discover I have avid readers of my diary as I was instantly recognised as soon as I walked through the gate.
Friday, May 16, 2014
I was busy today helping to sort out the finer details of a campaign I have been working on which will see the Queen's Hospital stock and promote a device known as a central line holder.
This invention will be of great benefit to haematology patients and I have enjoyed working with the inventor of the product and gathering support from the hospital and MP Andrew Griffiths.
Thursday, May 15, 2014
Some of the projects I have been working on in the
past couple of weeks are starting to come to fruition. I received some good news today about a campaign I
started with Burton’s Queen’s Hospital and I am still in regular contact with
Anthony Nolan regarding their Roadmap to Recovery scheme.
These charity campaigns take a lot of time, patience and energy but the end results are worth the effort.
These charity campaigns take a lot of time, patience and energy but the end results are worth the effort.
Wednesday, May 14, 2014
Today I heard the sad news that Staffordshire teenager Stephen Sutton had died.
Stephen was remarkable in that he always kept positive even when faced with the worst. He said that he had the enthusiasm to live life, but not the time to do so.
You have time on your side, share some of Stephen's enthusiasm and start to live your life.
Cancer for me has kick-started certain things in my life - I have renewed vigor to do and change things. Don't 'give up' on life if faced with cancer.
Tuesday, May 13, 2014
You get to know a lot of genuinely nice people when you are diagnosed with something as nasty as leukaemia. I've met people on Twitter, Facebook and in Burton who I would never have been in contact with - all because of my CML. These are the few positives of fighting CML, it connects you with people you may not otherwise meet.
Finally, My appointment letter for a visit to a specialist at the hospital came today, it's in a couple of weeks on a Tuesday, so I'll keep you posted.
Monday, May 12, 2014
Did you that Monday, May 12 is International Nurses Day? Many probably didn't as nurses all too often are the forgotten element. Without my doctors, I wouldn't be here today - but likewise, I wouldn't be here either without the nurses. When you spend more than 100 days in hospital, you form strong bonds with the nurses and I feel they need celebrating and rewarding. Well done all, thanks for your care.
Also, today marked the day that the finalists were announced in the 101 Touch FM Pride of Burton Awards.
I have been nominated for the coveted Burton Pride Award along with two other finalists.
After speaking to some of those who put me forward for the award - these are the reasons why:
- Increasing overall awareness of leukaemia through my continued media presence,
- Increasing potential blood and bone marrow donors in the Burton area by 15 per cent;
- Raising thousands of pounds which has been split between Cure Leukaemia, Anthony Nolan and the QEHB;
- Spearheading a used stamp campaign which has seen LeukaemiaCARE benefit from more than 30kg of donations. When cashed in, the stamps have raised hundreds of pounds;
- Successfully lobbying MPs to support Anthony Nolan's 'Roadmap to Recovery' campaign;
- Campaigning to have Central Line Holders stocked by Burton Hospitals NHS Foundation Trust;
- Organising the now-annual motorcycle rally - the BONE-shaker MARROW-thon;
- And achieving all of the above while recoving from leukaemia and a stem cell transplant and spending 105 days of the past 12 months in hospital.
Read more about the 101 Touch FM Pride of Burton Awards here:
Sunday, May 11, 2014
I now know what people mean when they say they are experiencing a 'hot flush'. I can switch from being cold to having to start taking off my jumper in the space of seconds as a sudden heatwave engulfs my body. Yet as quick as this heat arrives, it is gone again and I am back to piling on the clothes to keep warm.
Saturday, May 10, 2014
I struggle when we have days of bad weather. Today I was out wearing a hat with ear flaps and a coat yet I was still frozen to the bone and felt pulled pillar to post. I feel the weather so much more now than ever before - every gust of wind feels like being hit by Mike Tyson.
Friday, May 9, 2014
Many people ask me how we discovered I had CML. At the time, there were big signs such as chronic headaches alongside painful and burning legs as well as a swollen spleen. But there were other signs which must have been linked including awful toe nails. I had them tested for a fungal infection - twice - but the results always came back clear. Now I am CML-free, my toe nails are perfect - just painful as the bad bits continue to grow out.
Thursday, May 8, 2014
Not a day goes by without somebody mentioning the charity motorcycle ride we held in March. Now that more and more people know us in the biking world, we're attracting more and more support by the day. We haven't officially announced the date for next year's charity ride yet but we already have close to 20 confirmed riders.
Yesterday, I had an telephone call from our local radio station 101 Touch FM. I have been shrorlisted as a finalist in their Pride of Burton Awards which will take place on Friday, June 6th.
The ceremeony is tipped to be a red carpet affair with a five course dinner.
I'll keep you updated as I learn more about the awards and the ceremony over the coming weeks. If you follow me on Twitter @Leukaemia_and_K , please use the hashtag #prideofburton if you mention these awards.
Wednesday, May 7, 2014
As with all long-term illnesses, there are times when you have to be assessed, quizzed and inspected by various health workers for lots of different reasons - and today was one of those sessions. Unlike my usual sessions with a doctor, I don't benefit from these visits as the results are for others to examine.
Tuesday, May 6, 2014
Monday, May 5, 2014
I filled in a detailed question and answer session today for the charity Bpositive as they may feature some information about me and my leukaemia on their website.
Bpositive is a support network for anyone who is unfortunate enough to be told they have leukaemia. The founder of the site is in remission himself from leukaemia after undergoing a stem cell transplant. Like me, his donor is from Germany and he was treated in Birmingham.
Sunday, May 4, 2014
I'm continuing to help as many blood cancer charities as my energy-levels allow. Nearly every day, I find a new avenue or new charity to help in one way or another. Just people knowing my story has a tremendous impact as it educates people about leukaemia while offering hope to anyone unfortunate enough to be diagnosed with a blood cancer.
Saturday, May 3, 2014
The good weather today isn't quite as exciting as it used to be. The medication I am taking makes me more sensitive to the sun, so I have to be careful about stopping out too long. My inner thermostat also isn't quite as it once was either, because as most people had their car air-conditioning on full blast, I needed the heater on high.
Friday, May 2, 2014
It was back to the hospital today, but for a social occasion.
We were invited by Cure Leukaemia to speak to Alex and Harry from the Rowing4Research team. These two men rowed across the Atlantic to raise money for Cure Leukaemia and I was filmed with them by BBC Midlands Today in November. As they last saw me when I was really ill, it was a nice touch for them to see me now in remission.
Thursday, May 1, 2014
I was touched by a television documentary today on a young woman fighting breast cancer and a brain tumour. As well as telling the story of Kris Hallenga, the documentary showed Kris' efforts to get cancer awareness taught in schools.
As one in three of us will get cancer, shouldn't we be taught at an early age what to look for to increase our long-term survival rates?
Wednesday, April 30, 2014
I returned to the hospital today for my regular check-up and I'm pleased to say that I am progressing well.
A few weeks ago, the doctors took a sample of blood to test for a gene known as BCR/ABL - the presence of this gene in your blood usually indicates Chronic Myeloid Leukaemia. My test was negative meaning that i am still in remission.
The drugs I take on a daily basis are called Tyrosine Kinase inhibitors - their job is to inhibit the formation of the gene BCR/ABL and so they are still working well too.
Tuesday, April 29, 2014
It's back to the hospital tomorrow for my routine appointment.
I'm keen to get the results back from a few tests I have had in recent weeks - firstly my MRI scan and secondly the special blood test which reveals the exact level of leukaemia in my blood.
Fingers crossed it has reduced further or stayed stable.
Monday, April 28, 2014
After an energetic weekend with lots of fresh air, I've been extremely tired today. My energy levels mean that if I have a busy day or two, I need a day to recover. I'm not in a position yet to cope with continuous days of activity.
Sunday, April 27, 2014
I did my bit for charity again today by supporting the Bike4Life charity motorcycle ride at RAF Cosford. The event raises money for the Midlands Air Ambulance and the RAF Museum at Cosford and our way of supporting the event is to take photographs of the riders as they arrive.
We've photographed a few charity rides now and so we're beginning to make a name for ourselves. Today was the largest event so far with more than 2,000 photographs taken.
Saturday, April 26, 2014
The weather may be a little hit and miss but we made an effort today to get some fresh air and a little exercise. It's surprising what outdoor air and a little stroll can have on your body. My energy levels don't allow me to walk far, but I can notice the difference already.
I have a new website.
Many of you will know that I already have one website up and running under the domain www.katherines-story.com
From today, we also have a second domain which is specifically for my fund-raising ride and other motorcycle-related bits as the BONE-shaker MARROW-thon is also a (BMF) affiliated motorcycle club as well as just a ride.
This new domain is www.boneshaker-marrowthon.com Visit the website
The site is still in its very early stages of construction, but at least the web address is up and running.
I have a new website.
Many of you will know that I already have one website up and running under the domain www.katherines-story.com
From today, we also have a second domain which is specifically for my fund-raising ride and other motorcycle-related bits as the BONE-shaker MARROW-thon is also a (BMF) affiliated motorcycle club as well as just a ride.
This new domain is www.boneshaker-marrowthon.com Visit the website
The site is still in its very early stages of construction, but at least the web address is up and running.
Friday, April 25, 2014
I'm back to experiencing really bad sleeping patterns which do nothing but leave you shattered all day. I learned quickly when in hospital that internet research is not a good idea as you normally end up self-diagnosing utter rubbish. I have to admit that I have done a little research this time, and the main cause is most likely a tablet I take twice a day.
Thursday, April 24, 2014
For many people, the name Stephen Sutton will now mean something to them. He is the 19 year-old from Staffordshire with terminal cancer whose fund-raising total has now surpassed the £2m mark - largely due to Stephen Tweeting earlier this week that he was close to the end.
I'm fully appreciative of everybody who has now pledged to support Stephen's chosen charity - the Teenage Cancer Trust. What I wish, is that people would support charities more often.
Why has Stephen had to get this close to the end before people decide to give and rich celebrities start to join the publicity campaign?
Why has Stephen had to get this close to the end before people decide to give and rich celebrities start to join the publicity campaign?
Wednesday, April 23, 2014
I would like to dedicate my diary today to Penny Walker who appeared in (Wednesday's/yesterday's) newspaper.
I remember sharing the same 'fear' when I was told I needed chemotherapy. I soon found that this fear-factor and worry was worse than the treatment itself.
i endured some of the strongest chemotherapy available and had radiotherapy on every part of my body. Yes I had days of sickness and yes I lost my hair, but the light at the end of the tunnel far outweighs the side-effects.
Before you know it, the treatment you will endure will be a blur and will be behind you. It's vital that you remain upbeat and don't dwell on the obligatory 'down days'. Stay strong and before you can blink, this 'blip' will be over.
My hair is now growing back at a rapid pace and my leukaemia has been kicked out.
Tuesday, April 22, 2014
Today it was back to the clinic - this time in Burton rather than Birmingham - for a meeting with a doctor. This meeting was more for others to assess my health and fitness rather than for them to tell me about my current state of health. I have a few of these assessment style appointments in the coming weeks.
It is very sad news today about Stephen Sutton (Stephen's Story) as his health worsens. please help him hit his £1m target.
Monday, April 21, 2014
I have to say thanks to the readers of my diary for your kindness and concern. Over the past few days I have spoken about my sore tongue and the issues this creates when using toothpaste.
A handful of people have come forward with suggested products, hints, tips and suggestions to help ease the pain - I will be trying some of these in the coming days. Who needs an agony aunt column when I have concerned readers?
Sunday, April 20, 2014
Today was another opportunity for me to give something back to all those people who have supported me, and more importantly, those who supported my charity motorcycle ride last month.
The day started with a trip to the annual Easter Egg run from the Town Hall to the Queen’s Hospital in Burton and ended with a trip to Solihull to photograph a huge St George’s Day parade featuring hundreds of bikes, cars, 4x4s and vans all flying our national flag.
The day started with a trip to the annual Easter Egg run from the Town Hall to the Queen’s Hospital in Burton and ended with a trip to Solihull to photograph a huge St George’s Day parade featuring hundreds of bikes, cars, 4x4s and vans all flying our national flag.
Saturday, April 19, 2014
As my tongue is proving to be a problem when it comes to simple tasks such as cleaning my teeth, I switched from normal toothpaste to children’s toothpaste.
Unfortunately, even this causes intense stinging and so I think I’ll have to resort to baby toothpaste in the near future.
Friday, April 18, 2014
A recurring side-effect of my transplant and drugs is a very sore tongue.
I am extremely aware of what foods cause the most pain, but now I am having issues brushing my teeth. The toothpaste is so strong, it is like putting acid on your tongue. i have had to resort to experiment with toothpaste designed for toddlers.
If you caught the VirginMoney London Marathon at the weekend, you may have seen a clip of this video during the BBC Sport coverage. This extended version of the film by Anthony Nolan shows just why the charity is so important.
If you caught the VirginMoney London Marathon at the weekend, you may have seen a clip of this video during the BBC Sport coverage. This extended version of the film by Anthony Nolan shows just why the charity is so important.
Thursday, April 17, 2014
The hidden side to a long-term illness is that you are almost always in demand from one agency or another for different assessments and health tests. I've now got two appointments in as many weeks so that I can be assessed on my health and long-term outlook.
Wednesday, April 16, 2014
Since my one-year anniversary feature appeared in the newspaper yesterday, I have been overwhelmed by emails of support, encouragement and joy.
When anyone hears the word leukaemia, or even cancer, there is a tendency to think the worst - and for very good reason as I lost my mum and sister-in-law within five months of each other in 2011.
And so this one-year feature of mine has acted as a ray of hope and encouragement for so many people. We need to start taking a positive stand against cancer - a positive mental attitude puts you in a much better fighting mood.
Tuesday, April 15, 2014 - One year since diagnosis with CML
I feel a million times better than I did this time last year.
Apart from having the bombshell dropped on me that I had leukaemia, I was also starting my first night in hospital. At the time this was a very scary experience as I had never been admitted to hospital or undergone any form of surgery or tests. Fast forward a year and I'm now a pro when it comes to hospitals and there aren't many tests or procedures which I haven't had done.
Now that I have reached my one year milestone, I would like to reiterate my thanks to the people of Burton and the readers of the Burton Mail who have supported me through a difficult journey.
I started this daily diary of my treatment on Monday, June 24 2013, in the hope that I would raise awareness of blood cancer and hopefully encourage more people to sign up to the blood and bone marrow register. I have achieved both - and more besides - and my diary will continue as there is still a long way to go on my recovery and I'd like to take you on this journey with me.
Read my one year since diagnosis feature in the Burton Mail here: CLICK FOR STORY
Monday, April 14, 2014
This time last year, I was gearing myself up for a visit to the A&E department at the Queen's Hospital the following morning.
Fast forward a year, and I am praying for a better night's sleep, praying that I don't experience another bout of cramp in my toes and hoping to lose the fidgeting feeling I have had all day.
But despite these grumbles, I would much rather be where I am today rather than where I was 365 days ago.
Sunday, April 13, 2014
It may be Sunday but my care and treatment doesn't stop.
Today we were back at the hospital in Birmingham for an MRI scan. The purpose is to determine if I am suffering from neuralgia parasitica - a nerve problem which could be behind the 'bee stings' I experience in my legs.
The bonus f visiting the hospital on a Sunday is that both the traffic and hospital were much quieter meaning the entire experience was quick and easy.
Saturday, April 12, 2014
I'm having a few problems with my overall body temperature. I feel cold when everyone else is putting on their shorts and then I have sudden hot flushes which leave me roasting.
I've read on a few leukaemia forums that one of the tablets I am taking can cause these hot spells. I'll have to monitor how it progresses over the next few weeks.
Friday, April 11, 2014
I've been busy trying to think of new ways to support the blood cancer charities which have been instrumental in my care. I have my ongoing stamp collection and we will repeat the BONE-shaker MARROW-thon ride again next year, but I'm after something in the meantime to help keep their funds afloat. Answers on a postcard please as to what I could think about for the summer.
Thursday, April 10, 2014
I managed to sleep much better last night. I'm not sure if it was a connection to me changing my tablet and food timings or if it was a result of me being so tired after days of no sleep that I could have slept anywhere.
Today i was touched by a YouTube video by 19-year-old Stephen Sutton who despite being diagnosed with terminal cancer, has a tremendous outlook on life. Search for the video yourself and make sure you use every one of the 86,400 seconds in each day to its full potential.
See Stephen's video below:
Wednesday, April 9, 2014
I'm still surprised by the widespread messages of support and goodwill I receive as a resort of my daily diary. Today a letter arrived just addressed to 'Katherine, Balfour Street' which clearly our post lady recognised as being for me. Inside was a collection of stamps for my campaign for Leukaemia CARE. I've been asked a couple of times recently if the stamp appeal is still running and the simple answer is yes - I plan to permanently keep the campaign open as it raises hundreds for the charity without too much effort or cost to anyone else.
Tuesday, April 8, 2014
My sleeping patterns continue to be disrupted but my body clock must be getting used to the situation as I'm not tired during the day. Just before Christmas I was lucky if I could manage four hours of activity a day followed by 20 hours of sleep. i'm now the opposite - awake for 20 hours a day and asleep (if I'm lucky) for four.
I'm now just seven days away from my one year anniversary since diagnosis.
Monday, April 7, 2014
I continue having trouble sleeping. We've swapped and changed covers and pillows but nothing appears to be working. It's now been a few weeks since I've managed a full night's sleep and so this gradual build-up of tiredness leaves you feeling rather rough at times.
Sunday, April 6, 2014
I ventured out into Derbyshire today for a change of scenery. Next weekend I am back at the hospital for an MRI scan so I have to take the opportunities when I can come rain or shine.
I've also been catching up on some of the work and campaigns the charities I follow are working towards - there are some important projects in the pipeline which I will continue to support.
Saturday, April 5, 2014
I can safely say that my shingles have now started to fully clear as the hardened scabs are falling out each time I comb my hair. I'm still struggling with my sleeping patterns and I don't appear to be any closer to finding out why or how to solve the problem.
Friday, April 4, 2014
Anyone who objects to supermarkets opening 24-hours a day hasn't had a bone marrow transplant.
I'm eager to try and carry on with normal life as much as possible but I am always wary of visiting crowded places as my risk of infection is far higher than normal.
Therefore, to allow me to enjoy visiting the supermarket, we have started to shop at rather unsociable hours. You'd be surprised how quiet the aisles are when shopping at 11pm - but at least I remain infection free.
Thursday, April 3. 2014
Today I've been busy sorting out used stamps for my LeukaemiaCARE appeal. It was during this sorting and bagging process that I came across a letter of support and appreciation from a reader - thanks to all those who continue to show me their support.
Letters are quite prominent in today's diary as I have received a letter of thanks from Anthony Nolan for my BONE-shaker MARROW-thon fund-raiser and I have finally discovered who sent me a letter whereby the contents went astray in the posting system.
Wednesday, April 2, 2014
I returned to the hospital today for my regular routine check-up.
My blood results continue to look promising and the blood transfusion I had last week has improved my haemoglobin and platelet levels.
A sample of blood has now been sent off to the laboratory so that the level of leukaemia remaining in my system can be monitored. If you remember, at the last count it was a microscopic amount. We need to make sure this level hasn't increased. Hopefully it is being wiped out by my new bone marrow and the tablets I am taking.
Tuesday, April 1, 2014
My sleeping pattern is getting worse - so much so that I wonder if going to bed is worth the effort as I am awake 90 per cent of the night. I can't pinpoint exactly when or why this sleeping issue started - I just want it to end. Sleep deprivation is so depressing.
Tomorrow we're heading back to the hospital so this will have to be a topic of conversation.
Monday, March 31, 2014
For the past couple of nights I have really struggled to sleep. I don't know why this has suddenly started, but I'm finding that I am still wide-awake at 3 or 4 am in the morning without having had a wink of sleep.
One theory is that I am on two new sets of tablets for my shingles and it could be these reacting with the tablets I continue to take on a daily basis.
Sunday, March 30, 2014
The weather this weekend has been glorious again.
After I missed all of last summer by spending my days having chemotherapy in a hospital ward, you might think that I would be itching to see the sun.
Unfortunately, one of the hidden side effects of my treatment means that I now have to avoid the sun. Too much sun can trigger a bad dose of GvHD and so I now have to be careful to cover-up, wear sunscreen and a hat.
Saturday, March 29, 2014
I've now had the appointment through for the MRI scan I need - this is going to take place on a Sunday in the coming weeks. Following my recent stay in hospital, I wouldn't be surprised if more tests and scans of various kinds don't follow in the next few weeks.
I'm back at the clinic on Wednesday this week for my routine blood tests which make sure there are no signs of leukaemia.
Friday, March 28, 2014
I'm beginning to get to grips with the side-effects of my shingles. I still experience electric-shock style pains shooting through my scalp but I am learning to handle them better.
Thursday, March 27, 2014
Wednesday, March 26, 2014
I made it home today - just.I'm beginning to get to grips with the side-effects of my shingles. I still experience electric-shock style pains shooting through my scalp but I am learning to handle them better.
It may be a coincidence, but these shocks are more prevalent when I experience a sudden shock or adrenaline rush. It can be something as simple as a car you're following braking suddenly - most people would get a sudden adrenaline rush as they went for the brakes, whereas I get a shock through my scalp.
I needed a good rest today after my late discharge from the hospital last night.
Since discharge, my tablet tally has increased again with two new batches of medication added to the list.
My day ended with the sad news that 27-year-old Ed Fox has died as a result of not finding a bone marrow donor. You have probably seen the 'Match for Ed' campaign which swept the West Midlands on television, radio and in the newspapers. Unfortunately, despite all of this publicity, a match wasn't found.
News like this leaves me thinking what I can do next to help increase donor numbers further. Too many people are dying unnecessarily.
Wednesday, March 26, 2014
It was very close to breaking into Thursday morning before I finally made it home, but I got there in the end.
The doctors noticed that my haemoglobin levels were slightly low today (more than likely because of the medication I am taking) and therefore I was given the option of having two bags of blood today before I left, or return on Friday.
The first option sounded the best but I hadn't bargained on being allowed to take part in a charity cheque presentation we had pre-arranged at the hospital.
This cheque presentation threw the schedule out of sync and I ended up having the blood much later than planned resulting in a very late discharge.
Tuesday, March 25, 2014
I was moved to my usual haematology ward at around 1am this morning, but
as I've spent so many hours in this ward, I know all of the nurses by
name - this ward has become my second home over the past 12 months.
I'm still holding on to the hope that I can return home tomorrow, The doctor hinted that this would be the case when he visited today.
Tomorrow also marks the day that my BONE-shaker MARROW-thon fund-raiser hands over a dummy cheque for a photograph with the charities at the hospital. Unfortunately, it looks as though I am going to miss this opportunity as my expected discharge from the hospital won't happen until early evening.
I'm still holding on to the hope that I can return home tomorrow, The doctor hinted that this would be the case when he visited today.
Tomorrow also marks the day that my BONE-shaker MARROW-thon fund-raiser hands over a dummy cheque for a photograph with the charities at the hospital. Unfortunately, it looks as though I am going to miss this opportunity as my expected discharge from the hospital won't happen until early evening.
Monday, March 24, 2014
I hoped that I would be making my way home
today, but it looks as though I am going to be a resident at the Queen Elizabeth
Hospital in Birmingham for a few more days.
The doctors are concerned about the location
of my vesicles (shingles blisters) as they are apparently in a rare place. The
nerve where my blisters are forming can cause sight or hearing problems and so I
am going to be monitored for a few extra days. They also want to ensure that I
don’t suffer with postherpetic
neuralgia (nerve pain) once the shingles subside.
I’m now hoping that I should be home by
Wednesday.
BONE-shaker MARROW-thon cheque presentation details:
Sunday, March 23, 2014
Today marked my first full day back in hospital and
so I’ve been getting used to walking around with drip stands and learning to
ignore the almost continuous warning beeps from the automated drip
machines.
The doctors have now diagnosed my condition as shingles
which is affecting my fifth cranial nerve (a
bundle of nerves that controls areas of sensation
and movement in the face).
To tackle this problem I am on intravenous antibiotics
which should soon switch to tablet form so that I can continue to recover at
home.
Although the antibiotics appear to be working, I am
still in quite a lot of pain and need fairly frequent doses of pain relief
medication.
I’m crossing my fingers that I can return home tomorrow armed with a box of antibiotics and a box of painkillers.
I’m crossing my fingers that I can return home tomorrow armed with a box of antibiotics and a box of painkillers.
The view from my room at the Queen Elizabeth Hospital Birmingham.
Saturday, March 22, 2014
The day started with me having to sort an emergency appointment with the doctor as the electric shock pain running through my scalp was intensifying and I noticed the onset of small blisters beneath my hair.
The doctor agreed with my assumption that I had shingles and it was agreed that I would contact my team in Birmingham to discuss how best to proceed.
Birmingham wanted to see me for themselves and so we made our way over to the hospital - having been told beforehand that I may not return home today.
As you might guess, I am being kept in for a few days while I start a series of intravenous drugs to halt the spread and progression of the shingles.
This marks my first stay in hospital for 2014 - I was hoping to avoid overnight ventures this year as my stint last year was more than enough for anyone.
Friday, March 21, 2014
I had to resort to a few pain killers today as this problem with my head hasn't improved and the sharp electric shock style sensation is becoming a little more frequent.
I feel fine in myself - probably the best I have been for months - it's just this problem upstairs which is frustrating me.
Thursday, March 20, 2014
Thursday, March 20, 2014
Wednesday, March 19, 2014
I'm still suffering a little with a sore head - and I'm still no further forward in working out why.
Apart from this reoccurring soreness in my head (it's not really a headache) and some tiredness, I am feeling okay today. If this head problem continues, we will be forced to have it checked out by my medical team.
Tuesday, March 18, 2014
I've been suffering with a sore head all day. I did bang it on a cupboard a few days ago but the impact wasn't huge and there are no visible marks, bumps or cuts.
The pain isn't one I would normally associate with banging my head, so although I could worry that this discomfort is caused by this knock, it could equally be linked to GvHD or even the drugs I am taking. Things aren't always black and white anymore.
Monday, March 17, 2014
More and more people are diagnosed with leukaemia every day.
I know I should be resting and taking it easy after my treatment and transplant but I am acutely aware of the continuing need for funding for the charities. Therefore, I am starting to think about my next fund-raiser.
This time it's a sponsored team walk between Birmingham and Burton using only canal tow paths.
Sunday, March 16, 2014
I'm having to resort to drinking through a straw as the sides of my mouth are beginning to split. If I'm not careful, every sip I take, takes on a taste of blood, therefore, straws are the answer. In addition to this, my taste buds have changed as food and drinks which used to taste normal now taste very different.
Saturday, March 15, 2014
I am starting to have relatively normal days as the days of nausea and tiredness have passed. I'm coping with the tablets I am now taking, although the strict timings and rules mean that when I can eat has to be controlled. One of the tablets requires me not to eat anything for two hours before I take the pill and then nothing for one hour afterwards - giving me a three-hour no-food window both in the morning and at night.
Friday, March 14, 2014
It's less than two weeks ago since I held the BONE-shaker MARROW-thon motorcycle ride and fun day to raise money for charity, and I am already thinking about next year.
The response from the bikers who took part has been overwhelmingly positive and so plans are being put in place to hold the event again next year.There will be a few changes to the event, and the date is likely to change, but planning early ensures the ride is bigger and better than this year. The number of potential riders has already doubled as interest grows.
Thursday, March 13, 2014
As the dosage of some of my tablets was reduced yesterday, I have had a much better day.
I am now taking just one 25mg anti-rejection tablet each day compared to the 250mg twice-a-day dose I was on immediately following my transplant.
As my tablets are working on a sliding scale, I have now increased the chemotherapy-style tablet - this tablet is making sure the leukaemia doesn't return. As the anti-rejection drug dose is lowered, the dose of this tablet increases.
Wednesday, March 12, 2014
It was back to the hospital today. My blood results were good and these are the most important element when it comes to assessing my progress.
My consultant was interested to hear about the stinging in my legs and believes he knows what it is and what's behind it. Before any conclusions are made, I am going to have an MRI scan to double check there is nothing else causing the pain.
Tuesday, March 11, 2014
It's back to the hospital tomorrow and the first thing on my agenda will be the increasing discomfort in my legs. I've now resorted to prescription-strength painkillers to help ease the sensation at night as I have had a few nights where I've only managed two hours sleep and this is having an impact on my ability to manage a full day.
Monday, March 10, 2014
I had the worst night of all time last night with close to zero hours sleep.
Side-effects common with GvHD are increasing at pace and so I am pretty much continuously in discomfort with either stinging in my legs, itching under my arms, a sore tongue or split lips.
Things have certainly changed over the past few days and I'm suffering as a result.
Sunday, March 9, 2014
We went along to Bassetts Pole and to the National Memorial Arboretum to see the bikers hand over shoeboxes full of donations for troops serving abroad. The weather was fine and the turnout was good and as a result, we have made some new friends in the biking world.
Saturday, March 8, 2014
I may be tired but I am finding it increasingly difficult to have an uninterrupted night. Whether it is aches and pains which keep me awake or just a sense of restlessness, I never achieve more than a few hours continuous sleep.
My tongue is still sore which makes eating what you want to eat a chore. The good news, is that this tongue problem can only be GvHD - when the donor cells start to attack my body.
Friday, March 7, 2014
The stinging sensation in my legs is still an annoyance. I read today through an online support group that leg pain is sometimes a side-effect of one of the tablets I am taking, which always leaves me questioning whether I am witnessing side-effects of drugs or GvHD. I want it to be GvHD.
The official figures for the BONE-shaker MARROW-thon charity ride and fun
day are:
Total raised: £2,001-23p
Total raised including Gift Aid £2,178-73p
An equal (33.3%) split between the three charities equates to a share of (approximately) £667 (or including Gift Aid) £726 each.
An equal (33.3%) split between the three charities equates to a share of (approximately) £667 (or including Gift Aid) £726 each.
My Virgin MoneyGiving page is still open and active if you would like to help increase this total:
Thursday, March 6, 2014
I was feeling charitable today and decided to repay some of the bikers who attended my ride on Sunday by supporting their ventures. Sunday will see bikers making their way to the National Memorial Arboretum for a shoebox appeal - where goods are packed into a shoebox and sent to troops overseas.
With a mountain of stock left-over from my fund-raiser on Sunday, I packed up two shoeboxes and took them over to one of the organisers in Halesowen (Birmingham) ready for the ride at the weekend.
Wednesday, March 5, 2014
I've had an awful day with my leg as symptoms of GvHD start to increase.
It's a feeling of pins and needles inside the muscle of the leg while the skin feels quite tight to touch. As the dosage of my anti-rejection drug continues to lower, I'm expecting the GvHD symptoms to continue to increase. Today has just been awful so it's scary to think of how bad this may get in the coming weeks.
Tuesday, March 4, 2014
The late nights and chaos of the past few weeks are starting to catch up with me. However, I shouldn't moan too much because two months ago I wouldn't have had the energy levels to do half of what I have achieved recently. More positive feedback keeps flooding in on my charity ride - so far it's been a 100 per cent satisfaction rating - which is extremely rare for a first attempt at such a venture.
Monday, March 3, 2014
The day after my fund-raiser has been just as busy as the weeks leading up to the event.
Feedback from the bikers who took part has been overwhelmingly positive - therefore, a return of the BONE-shaker MARROW-thon ride in 2015 is looking promising.
I'm suffering a little after putting in so much effort for the past weeks - I just need lots of rest to recuperate and re-charge my batteries.
Sunday, March 2, 2014
Today is the day - it was the first BONE-shaker MARROW-thon.
I say first, as we haven't ruled out running a similar event next year and maybe turning it into an annual event. The weather impacted on the overall turnout but we were happy with the numbers attending and have already thought of how we could change or alter the event should it return in 2015. This may include running it later in the year to hopefully guarantee warmer (and drier) weather as well as maybe just running the ride as a stand-alone event separate to the linked-in fun day.
Saturday, March 1, 2014
If I thought Friday was hard-work, today has really pushed my now exhausted energy-levels to the limit. Going to bed at 2am for two or three days in a row would have a serious detriment to a fully-fit person, never mind somebody who is still recovering from extensive leukamia treatment.
Friday, February 28, 2014
I am really pushing my energy levels to the limits as I try to frantically prepare everything for my fund-raiser on Sunday. So much behind-the-scenes work goes into planning such events. Work which nobody ever sees and nobody realises you had to do, but is vital to the smooth running of the day.
Thursday, February 27, 2014
I'm having to juggle visiting the hospital to see my dad with working on my fund-raiser which is taking place this weekend. Thankfully, much of the nausea and tiredness as subsided now as I am having to work late into the evening to keep on top of things. It looks as though it may be a few weeks yet before my dad proves himself fit enough to be allowed home - therefore, hospital visiting will be a major factor for a while yet.
Wednesday, February 26, 2014
It was back to the hospital again today - my second appointment in three days.
The results show that my body has a leukaemia reading of 0.004 per cent.
This is a minuscule figure but clearly, the overall aim is to achieve a reading of 0 per cent.
The onset of 'graft versus leukaemia' coupled with the tablets I take should eradicate this 0.004 reading.
I also spotted more coverage of my fund-raiser while at the hospital - it's also in the QEHB Charity magazine.
Tuesday, February 25, 2014
Today has been a day of visiting the Queen's Hospital in Burton as my dad continues to recover from his operation, while tomorrow will be a day at the Queen Elizabeth Hospital in Birmingham for my routine appointment.
Tomorrow's check-up should be useful as hopefully the results of my x-ray and ultrasound scans should be ready.
Monday, February 24, 2014
It was back to the hospital today for my x-ray and ultrasound tests.
These were arranged to determine the cause of a pain I sometimes experience in the left side of my body.
I'm now a familiar face at the hospital as I am on the front page of the hospital's charity newspaper QEHB which is widely distributed throughout the complex.
Regular readers of my diary will know about the charity motorcycle ride and family fun day I am holding on Sunday. Hundreds of bikers are expected to leave the Queen Elizabeth Hospital in Birmingham at around 10am. They will then make the 35-mile journey to Burton-on-Trent.
In Burton, the bikers will pass (but not stop) the Queen's Hospital. From here, they will head to the Pirelli Stadium for a family fun day (stalls, raffle, tombola etc). The bikers should arrive back to Burton between 11.15am and noon depending on their speed/ traffic/ departure time etc.
The Pirelli Stadium (Burton Albion FC) will open a snack bar for hot/ cold drinks, hot food and an alcoholic beverage bar.
I appreciate many of my diary followers are not from Burton-on-Trent. Therefore, hopefully this map of basic instructions should help if you decide to pop along and support my fund-raiser.
I'm raising money for Cure Leukaemia, Anthony Nolan and the Queen Elizabeth Hospital Birmingham Charity.
Click HERE for the map
Sunday, February 23, 2014
You could guarantee that everything would happen at the same time in what's probably going to be my busiest week of the year. It's my x-ray and ultrasound tests tomorrow.
Saturday, February 22, 2014
I have been trying to wean myself off some of the anti-sickness medication I am taking.
After suffering an extreme bout of nausea this morning, I have decided to scrap that idea for now. I'd rather take the tablets and feel well rather than leave them out and feel rotten.
We're now regular visitors to the Queen's Hospital as my dad recovers from his operation.
Friday, February 21, 2014
My dad had his operation today for his fractured hip –
instead of trying to repair the damaged ball joint, they have replaced it with
an artificial piece. He is determined to be up and about as soon as he can, as
he is adamant that he will make my charity fund-raiser next weekend.
As for me, I’ve had a couple of very good days with just the
occasional nausea. There is so much still to do in preparation for next Sunday’s
event that I cannot afford to feel ill anymore.
If anyone would like to support my charity event - but cannot make it on the day - donations can be made via my Virgin MoneyGiving page:
If anyone would like to support my charity event - but cannot make it on the day - donations can be made via my Virgin MoneyGiving page:
How much bad news can one family handle? I’m not talking about my recovery from leukaemia, I’m talking about the other stresses and strains which I have to endure.
Today my dad tripped over an extension cable and fractured his hip, so it’s been another day of ambulances and hospitals as he is prepared for surgery in the morning.
Just when we think we have seen the back of hospital wards for a while, my dad takes up the baton with his 999 admission
After feeling under the weather yesterday, I am back firing on all cylinders today.
Today has very much been a full day on my fund-raiser with lots of miles covered collecting raffle prizes and an afternoon publicity photo-shoot with the Burton MP Andrew Griffiths - who hopes to take part in the fund-raising motorcycle ride himself.
My appointments have now come through for my x-ray and abdominal ultrasound tests - it looks as if a lot of next week will be spent in Birmingham.
Tuesday, February 18, 2014
I've felt a little under the weather today. It's hard to pinpoint exactly what's wrong, but I've felt tired, drained and have suffered from annoying heartburn and indigestion feelings.
Part of the problem may be down to over-exertion as I was up and about very early this morning working on my fund-raiser. I have to appreciate that I don't have the energy levels I once enjoyed.
Monday, February 17, 2014
The stinging in my legs which plagued me yesterday has been much better.
On the one hand, this is good news - but on the other, these hit-and-miss side effects which come and go make it very difficult to judge if it is GvHD or just an issue caused by one of my tablets.
I am still being contacted by people in the UK and abroad who have read about my leukaemia and my diary and want to get in touch. There are some truly good people in the World who care so much for others.
Sunday, February 16, 2014
The stinging sensation in my legs has really started to intensify. It's not a continuous feeling, it comes on in spells throughout the day - it's just that today, these spells have been more frequent with greater discomfort.
I'm fairly certain that it must be a sign of Graft versus Host Disease. Unfortunately, there are no physical markers which anyone can inspect to give a definitive diagnosis.
Saturday, February 15, 2014 - Entry Number 2
My remission news is proving very popular with lots of messages on Twitter, Facebook and via email. Just as the storm was settling from the Burton Mail front page story, the Daily Mail Online published the story and the publicity tornado continued.
With just two weeks and one day to go until my charity event, we have been trying to work on the preparations - but today even Stephen was finding avoiding the spotlight difficult.
When your face is on the front page of the newspaper, you cannot really go anywhere or do anything without complete strangers wanting to speak to you.
Daily Mail Online Story
Saturday, February 15, 2014 - Entry Number 1
I need to say a little 'sorry' to my loyal followers.
Many of you will have been checking my diary on a regular basis to discover news of my clinic visit on Wednesday. The news was exceptionally pleasing - I am in remission.
As I continue to be the face of leukaemia and stem cell donor campaigns across much of Staffordshire and Derbyshire, we agreed with the newspaper not to reveal the news until today.
We've spent the past couple of days sorting photographs and quotes for the newspaper story which appears in today's Burton Mail on the front page - as well as on most of the town's billboards.
Friday, February 14, 2014
I was out and about early this morning as I try to drum up support for my charity fund-raiser on March 2. This continuing bad weather is a worry, but my optimistic theory is that this storm will have cleared by then and we will be enjoying beautiful sunshine with cloud-free days.
Thursday, February 13, 2014
With just a couple of weeks to go until my fund-raising motorcycle ride, I am having to dedicate as much time as I can manage to the project.
I still suffer with the occasional bouts of fatigue and nausea, but I try my best to keep as active as possible.
My aim was to raise £1,000 for each of the three charities I am supporting.
I think I should easily surpass this target as so far through online donations and raffle ticket sales, I have already raised around £1,000.
Wednesday, February 12, 2014
This freak weather is starting to cause a headache when it comes to heading over to Birmingham for routine appointments. Some of the roads were resembling small rivers and the high winds threw up their own obstacles with flying signs and branches.
I'm waiting for the forecasters to warn you not to venture out unless vitally necessary - as my hospital appointments are always vital, we will have to venture out regardless.
Tuesday, February 11, 2014
Tomorrow is D-Day as I discover the success so far of my stem cell transplant.
The result is impossible to predict which makes my clinic appointment tomorrow more worrying.
On the positive side, recent blood tests revealed very promising results.
But on the negative side, I haven't had many confirmed signs of Graft Versus host Disease.
I have had side-effects which could be GVhD, but the condition hasn't been officially diagnosed by a doctor which always leaves me in doubt.
Monday, February 10, 2014
I've had some good news today from one of the many charities I am keen to support.
I found out today that the latest batch of stamps sent to Leukaemia CARE is expected to raise in the region of £350 for the charity.
All of those doubters who questioned how much they thought I expected to raise by saving used stamps can now hopefully see that every little bit does help. I know that my loyal supporters continue to drop stamps off at the Burton Mail so another delivery will be made to Leukaemia CARE in the coming weeks. Thank you, and please keep saving.
Sunday, February 9, 2014
Despite the ongoing awful weather, I enjoyed a change of scenery and drive through Derbyshire.
My somewhat rapid hair regrowth following my chemotherapy means that I no longer have to leave the house dressed like an Eskimo.
Saturday, February 8, 2014
It's still so far so good following my 100 day marker.
I'm starting to get slightly nervous about hearing the results of my latest bone marrow biopsy on Wednesday. Yet at the same time, I am eager to know the success of the transplant I had in October.
You shouldn't be too surprised to learn that day 101 was no different to day 100, 99 or 98.
Over the next few weeks, my tablet ritual should become slightly easier as many of the tablets you have to take following transplant stop from day 100 onwards.
My anti-rejection drug dosage will also continue to lower. As for pills such as penicillin, I will be on a daily dose of this for life.
Today I have been busy making preparations for my fund-raiser on Sunday, March 2nd. Please help spread the word if you can so that we attract a huge crowd.
More people = more life-saving money for Anthony Nolan, Cure Leukaemia and the Queen Elizabeth Hospital Birmingham Charity.
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