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03/05/2015

May 2015 onwards

Sunday, May 24, 2015
My foreign currency collection scheme for Leukaemia CARE is already proving popular - we've already got eight boxes being sent to the Birmingham-area thanks to friends on the motorcycling community. 
If anyone wants a box to start their own collection, please contact me:
Click here to email me.

Read the Burton Mail story on the campaign here:




Saturday, May 23, 2015
My foreign currency fund-raising scheme was officially launched today in the Burton Mail with a publicity article. I can now start to promote the scheme on social media.
I'm after any spare foreign currency you have and if you have a lot, I can even arrange for the agency to send a box directly to you. These boxes contain everything you need to collect - bubble wrap, money bags and sticky tape. They are delivered and collected free - all you have to do is fill it with foreign coins and notes.






Friday, May 22, 2015
Next Thursday it is World Blood Cancer Day. I am in the process now of trying to determine what I can do to help promote and support the event. The main theme of the event is to raise awareness of 'togetherness' and so the symbol chosen to represent the day is the ampersand symbol (the fancy 'and' sign) = &




Thursday, May 21, 2015
The latest box of stamps was posted today to Leukaemia CARE. The Ashbourne News Telegraph is planning an update on me next week to help further promote the new foreign coin scheme so I am hoping for a good response.

Wednesday, May 20, 2015
My latest fund-raising initiative gets underway today as we've prepared a story and images to promote my foreign coin collection scheme. The idea is simple - if you have been on holiday recently you will no doubt have a pocket full of small change. This cannot be exchanged at the travel agent back to British pounds and so you are left with a handful of useless coins. It's this foreign currency I want as I can turn it into cash for Leukaemia CARE.






Tuesday, May 19, 2015
I've been busy sorting and packaging the latest collection of stamps in preparation for sending them to Leukaemia CARE. I estimate this latest batch is around 3kg but includes some very old stamps which will significantly increase the overall value.

Monday, May 18, 2015
Today I received a huge batch of stamps from the Ashbourne News Telegraph offices - their readers have been eagerly collecting on my behalf. Within one of the envelopes I discovered a loom band featuring the name 'Katie' which I can only presume was a gift for myself. Many thanks for your thoughts.




Sunday, May 17, 2015
It was the third annual Stephen Sutton charity motorcycle ride today and so we were on photograph duties. The ride left Lichfield Rugby Club before heading out towards Alrewas and back around to Burntwood. We took hundreds of pictures as usual - hopefully the event raised a lot of money for the Teenage Cancer Trust.




Saturday, May 16, 2015
Following my usual pattern, a day out yesterday means I am feeling tired today. We did however manage to get out and about a little and I caught the sun - which isn't good news. My tablets and treatment mean I now burn so much easier and despite my precautions, the sun caught me.

Friday, May 15, 2015
In what is a rare day out for us, we went to Trentham Monkey Forest to mark our 12th anniversary of meeting. It was 12 years ago today that Stephen and I first met in Lichfield and so we decided to mark the occasion while tourist attractions such as the monkey forest are pretty much empty.




Thursday, May 14, 2015
Everything is starting to fall into place with regards to the foreign coin collection scheme I am starting with Leukaemia CARE. A story will be published in the coming days and we have some collection boxes coming from the agency who deals with turning the coins into cash for charity.

Wednesday, May 13, 2015
It's the Cure Leukaemia dragon boat race in Birmingham in a couple of weeks. I'm hoping to help in someway on the day as we helped them secure the bid for the event just before Christmas.

Tuesday, May 12, 2015
I'm trying to keep as active as possible and have downloaded a couple of step-counting apps for my smartphone. They have obvious disadvantages in that you have to keep your phone with you all of the time to get accurate readings but they help to give you a general idea as to your activity levels.

Monday May 11, 2015
My unusual stomach pains have just about disappeared. I now notice that any ailment I have, always stays with me for seven days and I am now getting to the end of seven days of discomfort.

Sunday, May 10, 2015
For the past seven to 10 days, I have been experiencing bouts of lower abdominal pain. This pain is intermittent making it hard to pin-point the exact pain or cause. 

Saturday, May 9, 2015
With all of the politics now out of the way, I can get back to campaigning about food hygiene scores. The delay some months ago was that there was an election looming. Now, hopefully, there isn't any excusable delay.

Friday, May 8, 2015
My recycling scheme looks set to extend to foreign coins in the next few weeks. Each time you come off a foreign holiday you accumulate a handful of foreign coins which are too small to change back to British pounds. This new recycling campaign will give you an outlet to give these foreign coins to charity.

Thursday, May 7, 2015
With the election now almost out of the way, it's back to work on various campaigns. We've been in talks today with the charity Leukaemia CARE regarding our stamp collection as we dispatched another 2.5kg worth today from the Burton Mail offices and have another couple of kilos due to arrive from the Ashbourne News Telegraph offices. We may now be able to extend the recycling campaign beyond stamps - keep your eyes peeled.

Wednesday, May 6, 2015
Many of the charities have been publishing their election wish-lists. Without turning too political, all of the charities are slightly worried as a new or changed Government could mean changes to the NHS or cancer treatment. Nobody knows what will happen - it's just a slight fear of what may or may not happen.

Tuesday, May 5, 2015
I've been dealing with the consumer watchdog Which? again regarding food hygiene scores. Progress at the moment has been slow because of the election - which appears to have taken over events for the past six months.

Monday, May 4, 2015
I'm pleased to see that the C Word has made such a huge impact. All press and media reviews are raving about the drama - while at the same time it has helped to raise awareness of cancer, its treatment, the impact cancer has on the family, and its deadly consequences.





Sunday, May 3, 2015
Today  is dominated by a television drama - The C Word.
Here's the post my husband published on Facebook following the 90 minute drama:


Just watched the best television drama we have seen in years. . . . The C Word.
It ranks as being the most accurate portrayal of cancer and its horrendous treatment ever publicised. It’s impossible to put into words the impact of this drama – but this isn’t television, this is real life.
As a couple, Katherine and myself where able to relate to every single one of the trials and tribulations of Lisa Lynch’s (Sheridan Smith’s) treatment.
We’ve suffered the life-shattering side-effects, we picked handfuls of hair from the plughole and used a sticky-roller to try and keep up with the constant battle with hair loss.
I’ve sat in the manager’s office arranging time off work, we’re cancelled pre-booked holidays and have been quoted eye-watering amounts for travel insurance since.
We’ve been stopped in the street by random strangers because they recognise Katherine’s photograph in the newspaper and read her daily diary.
We’ve also done a wedding with a wig.
And unfortunately, we’ve also learned of the deaths of some friends and followers you inevitably gain on Twitter and Facebook.
Paul Nicholls (playing Pete Lynch) and Sheridan Smith have just played out the past few years of our lives.

And within minutes of The C Word finishing, the BBC 10 O’clock News starts with more of the endless political back-slapping and back-stabbing which has dominated our televisions for months.

The C Word puts life into perspective.

As a bonus, Sheridan Smith now follows me on Twitter. What an amazing actress.

Saturday, May 2, 2015
For the first time in weeks I have started to feel relatively normal. It has been so busy over the past couple of months with a trip to London, our charity motorcycle ride and the marathon runners completing their fund-raising, it has been an epic everyday challenge.

Friday, May 1, 2015
As our marathon runners are keen to continue with the 'Run4Katherine' name and team, we've been in touch with the Anthony Nolan charity to discover what other events the team may be able to enter. With London under their belts, next time it could be Berlin or New York.

02/01/2015

In the year 2015

Thursday, April 30, 2015
There is a very powerful drama planned for Sunday evening - The C Word. Starring Sheridan Smith, the drama promises to be powerful and touching.

Wednesday, April 29, 2015
There's no visit to the hospital today which is a rarity - and a welcome bonus as I am so tired.

Tuesday, April 28, 2015
I'm slowly starting to recover after what has been a very busy few weeks. It's been so busy I haven't had time to fully recover and my energy tank has been running lower and lower.

Monday, April 27, 2015
Post-ride and marathon work continues as there is so much correspondence to deal with for the various events between the charities. Thoughts are already centred around the next challenge.

Sunday, April 26, 2015
Our three marathon runners all successfully completed the London Marathon under the team name of 'Run4Katherine'. Their total fund-raising total was an incredible £6,597-40.
With the London Marathon complete, the runners are already hinting that they may undertake more challenges for Run4Katherine.






Saturday, April 25, 2015
Armed with a bucket full of coins we headed to the bank to pay all the monies from last week's charity ride into our account so that we can make the necessary online donations via the Virgin Money Giving website.
The total raised from this year's ride was £1174-22. We will organise a dummy cheque presentation in the coming weeks.



Friday, April 24, 2015
Work continues on the BONE-shaker MARROW-thon as we have selected a prospective date for 2016 and now it is time to start filling in various accounting returns for the money we have raised.

Thursday, April 23, 2015
Attention now turns to our three marathon runners who take on the London Marathon on Sunday for Anthony Nolan. The team - known as Run4Katherine - have managed to hit their £5,550 target but the more we can raise the better. If you want to sponsor our runners, their JustGiving page is:
https://www.justgiving.com/Run4Katherine

Wednesday, April 22, 2015
It was back to the hospital today to see the eye specialist. Thankfully, my vision is perfect and there are no signs of any serious GvHD issues as a result of my transplant. I've been issued with some drops for when my eyes are sore.
We also had to return the trike to Harley-Davidson today.

Tuesday, April 21, 2015
Our ride this year has so far raised more than £1,100 which will be split between Cure Leukaemia, Anthony Nolan and the Queen Elizabeth Hospital in Birmingham. 
I'm hopeful this total will continue to rise as people make last-minute online donations through our Virgin Money Giving page:
http://uk.virginmoneygiving.com/Boneshaker

Monday, April 20, 2015
The ride may be over for another year but the work continues as it is now time to start counting the money, posting raffle prizes and dealing with the post-event forms and admin. The Harley-Davidson also has to go back to Gloucester on Wednesday.

Sunday, April 19, 2015
It was our charity motorcycle ride today. Thankfully the weather remained dry and the number of bikes taking part had increased since last year. Finishing at the National Brewery Centre was a great choice and everyone appeared to have a great day.
If you haven't already, please sponsor the event and help to increase our fund-raising total:
http://uk.virginmoneygiving.com/Boneshaker


Saturday, April 18, 2015
It was time for me to have a test-ride on the trike today in preparation for tomorrow's charity ride. It was a great experience and our 15-mile ride took me on country roads and dual carriageways so that I could get used to the different situations.
We also took time to take more publicity photos.





Friday, April 17, 2015
All efforts are now focused on the BONE-shaker MARROW-thon this weekend. Boxes of materials have been dropped off at the museum and our student helpers have their buckets and T-shirts ready for the big day.
Please support the event as every penny helps eradicate blood cancer:
http://uk.virginmoneygiving.com/Boneshaker

Thursday, April 16, 2015
Support and publicity for Sunday's ride is growing. And the weather forecast is looking promising too. If you can't make the ride but would like to make a donation to support the charities, visit http://uk.virginmoneygiving.com/Boneshaker

Wednesday, April 15, 2015
It was my two year diagnosis anniversary today - and what a busy day I had. 
Firstly I had two hospital appointments. Unfortunately, some of the tests I have had over the past weeks haven't revealed a cause behind my current issues. Monday's CT scan hasn't been processed yet and so this may still have the answer.

Following a busy morning at the hospital, it was a trip to Gloucester to collect a Harley-Davidson Tri-Glide (trike) ready for Sunday's BONE-shaker MARROW-thon.
The agent we collected the bike from was superb and the long ride home was good (thrown in at the deep end) tuition for Stephen - especially as it was roasting weather and continuous traffic jams.




Tuesday, April 14, 2015
I've felt slightly funny today after the various liquids and injections I had to consume yesterday in preparation for my scan. Tomorrow promises to be a very busy day with two hospital appointments and a trip to Gloucester on the cards.

Monday, April 13, 2015
After drinking the bottle of liquid I was sent yesterday, I was at the hospital again today. This CT scan must be very in-depth as I had to drink some liquid yesterday, I was given another litre of special liquid to drink when I arrived and I was injected with some special fluid too.
As my appointment was late afternoon, it was gone 5.30pm before we left the hospital.

As the days count down to my charity ride, I'm appealing for sponsorship. If you can't make the ride but want to help boost our charity total, visit:

Sunday, April 12, 2015
The route for our charity ride has had to be changed. Part of the problem is because of the success of the ride and because of the good weather we are expecting. 
The original aim of the ride was to follow a 'Queens to Queens' route - the Queen Elizabeth Hospital in Birmingham to the Queen's Hospital in Burton.
However, there is no easy route to the Queen's Hospital in Burton - especially when we could have two, three or even four hundred motorcycles.
The safety issue of causing an obstruction near to the hospital has resulted in us scrapping the route via the hospital - instead we will head straight to the final venue.

Saturday, April 11, 2015
I have another CT scan on Monday and in preparation I have been sent a bottle of liquid by the hospital through the post. I've got to drink half of this liquid tomorrow evening - 24 hours before my scan time. I'm not sure how well it mixes with my medication which I have to take around the same time

Friday, April 10, 2015

With just over a week to go until our charity motorcycle ride, things have stepped up a gear or two. The route through Burton is still under scrutiny because of safety concerns and may end up being changed again. It's now also time for us to start making signs for the route which will be strapped to lamp-posts late next week.

Thursday, April 9, 2015
Parliament may be dissolved for the upcoming election but I am still working closely with the ministers from the Public Health department as I continue my campaign to make food hygiene ratings at restaurants compulsory. The latest twist shows the Government was adopting a system of cutting back on legislation and my plan would require extra legislation. 

Wednesday, April 8, 2015

We've had to make a few last minute changes to the route of our charity ride following safety concerns raised by our team of marshals.In hindsight, the new route is much better but the change just creates a lot of extra work in terms of notifying the authorities and updating the website.

Tuesday, April 7, 2015

With just a week or so to go until the BONE-shaker MARROW-thon there are lots of things to plan and finalise. With more than 200 riders showing an interest in the event on Facebook, the ride should be much bigger than last year.

Monday, April 6, 2015

It's taking me a while to recover from my busy week away last week. My entire body aches and it feels as if I have the flu.

Sunday, April 5, 2015

I'm really tired after my visit to London. I can manage one or two days of activity before I need the same amount of time to recover. I'm so tired and my legs feel so stiff and heavy that it's likely to take a few days before I am feeling better.

Saturday, April 4, 2015

I'm back home again now and waiting for me on the doorstep was an appointment for a CT scan next Monday afternoon. As this scan is looking at my internal organs, I have also been sent a bottle of liquid to drink 24-hours before the scan.

Friday, April 3, 2015

I'm thoroughly enjoying my time in London - and I'm walking greater distances than usual. The downside is that this extra exercise hasn't made any difference to my increased weight gain which again proves that this has nothing to do with anything I eat or drink or how much exercise I undertake - it is purely a side-effect of my tablets which I am hoping is rectified soon.

Thursday, April 2, 2015

There was a huge fire in London today - and our open-topped bus took us by the incident on our travels. This is when you realise that even open-top buses have their downside as I had to dart downstairs to avoid the clouds of black toxic smoke heading in our direction.

Wednesday, April 1, 2015

It's so far so good in London as I'm working to avoid crowded places and enclosed spaces. An open-top tour bus is a good way to travel when you have to avoid the underground.

Tuesday, March 31, 2015

I'm off to London today for a short break. As I'm still prone to infection, I'm going to have to be very careful when out and about and this means that the underground and enclosed buses are out of bounds. Travel will have to be on foot of via taxi.

Monday, March 30, 2015

Our charity runners have now reached their London Marathon sponsorship target for Anthony Nolan. Thank you everyone.

Sunday, March 29, 2015

I've been supporting the Shoeboxes for Heroes campaign again today - this is a scheme whereby shoeboxes are filled with goodies and then sent to our troops who are serving overseas.

Saturday, March 28, 2015

Plans for our charity ride continue to come together. A very nice firm in Birmingham - LogoMotif - has helped us by designing a poster for the event. We'll now start to get some of these posters printed and circulated.




Friday, March 27, 2015

Just a quick reminder that my charity runners - Run4Katherine - have their fund-raising event tomorrow night. They are now very close to hitting their target for Anthony Nolan.




Thursday, March 26, 2015

I've not had the best of days today as I'm frustrated with my gain in weight and the time it is taking to have the problem diagnosed and reversed. It's a game of patience but it is hard to get to grips with.

Wednesday, March 25, 2015

It was back to the hospital today. Firstly, my blood results are absolutely fine. The results which are testing for 'cushings syndrome' have been processed but the consultant who understands these figures was not in clinic. I have to wait another couple of weeks to get these results and a possible diagnosis. In the meantime, I'm being sent for a full body CT-scan to see if anything shows up on the scan.

Tuesday, March 24, 2015

Our attendance at the egg run on Sunday has gained us many new supporters who in turn may attend our ride. The numbers for our ride are slowly increasing and these are just the people we know - there is an unknown number of people coming who will have seen the ride in the press or on Twitter.

Monday, March 23, 2015

It's back to the hospital again later this week. I am hoping that there are some results ready from the tests I underwent a week or two ago. In the coming weeks I have a range of appointments with new and different doctors including a specialist eye doctor.

Sunday, March 22, 2015

We were in Stoke-on-Trent this morning to photograph the Star Bikers charity Easter Egg run. Hundreds of bikers bearing eggs made the run from the Britannia Stadium in the city. As a result, we're gaining more and more support for our ride in April.




Saturday, March 21, 2015

I like to walk along the canal at the weekends as it gives me exercise and some fresh air. Today's walk was a little longer than usual and helped to push me a little. 

Friday, March 20, 2015

Lots of work is going on behind the scenes on our charity ride. Clever use of Twitter and Facebook is helping to gain us dozens of new friends and followers every day who in turn then decide to join our ride. It's looking promising that we may even have some scooter riders on the run this year.

Thursday, March 19, 2015

A television programme today on the dangers of sugar has left me wondering and confused. Too much sugar we are told makes you fat. The alternative is artificial sweeteners - are these the same sweeteners which have been linked to leukaemia? Is that the only choice - fat or leukaemia?

Wednesday, March 18, 2015

Work has started in earnest now on our charity ride as we spend hours designing and printing labels and sticking them to collection buckets while sorting balloons, charity T-shirts and trolley tokens. We've spent quite a few hours today preparing things for our ride next month.

Tuesday, March 17, 2015

We have some great news. Harley-Davidson has agreed to loan us a Tri-Glide (trike) for our charity ride next month. All of the forms have been signed and driving licences checked. Everything is now starting to fall into place for our charity ride on April 19th.
My chest pain has finally started to subside - almost exactly a week since it started.

Monday, March 16, 2015

The days are ticking down until my three charity runners - Run4Katherine - take on the London Marathon in my name to raise cash for Anthony Nolan. The trio are now extremely close to reaching their £5,550 target but we still need more. The more money donated means the more lives we can save.
https://www.justgiving.com/Run4Katherine/

Sunday, March 15, 2015

My chest pain has still been on and off and continues to cause me problems.
I haven't heard anything from the doctors since my tests last Wednesday so I am hopeful they are okay.

Saturday, March 14, 2015

For the past few days I have been suffering with a chest pain each morning. This pain started after I had to take the steroid tablet on Tuesday evening in preparation for my tests on Wednesday. It's a strange pain as it vanishes by around 2pm but leaves me unable to bend down or move each morning.

Friday, March 13, 2015

I'm in the newspaper again today for the partnership story between the college and my charity ride. We've also had some very promising news surrounding our bike loan for this year. Last year my husband was loaned a brand-new Suzuki bike as at the time he was regularly reviewing their motorcycles for work. This year, I want to take part in the ride myself and we have therefore been searching for a trike so that I can ride pillion. It has taken months to arrange, but we are now 99.9% certain of having a Harley-Davidson Tri-Glide for the event next month. There's just a few more forms and emails to send before it is all fully booked and confirmed.




Thursday, March 12, 2015

For the past few months I have been the leukaemia representative for a campaign known as #KeepYourPromise. The campaign is a reminder to the Prime Minister that he made a promise that all cancer patients should receive the drugs they need - but now he is cutting the cancer drugs fund. Despite a petition and campaign, the cuts still went ahead which is a huge disappointment. A trip to Number 10 may now be called for to ask him in person - why?

Wednesday, March 11, 2015

Today's hospital visit was the quickest ever. We enjoyed an empty waiting room and had done all the tests we needed to by 9.15am. We've now got to wait a couple of weeks for the results. All of these tests are looking into whether it is something called Cushing's syndrome which is causing my weigh gain.

Tuesday, March 10, 2015

Today I need to take a steroid tablet in preparation for some blood tests tomorrow. The timings appear to be quite critical and so I have to take it at 11pm in preparation for blood tests at 9am.

Monday, March 9, 2015

We had a photograph taken today with the level 2 Public Services students at Burton and South Derbyshire College. It is these students who plan to help us at the BONE-shaker MARROW-thon in April.

Sunday, March 8, 2015
I've now started to prepare for my next appointment on Wednesday. 
Before we return to the hospital again this week, there are various tasks I have to complete and special tablets to take.
We've also been out today photographing a charity motorcycle ride in Birmingham. We're now well-known among the bikers for our photographs.

Saturday, March 7, 2015

We've had an appointment through for a CT scan - but this time it's not for me it's for my husband who has recently started to suffer himself. Fingers crossed in the next month that both he and I can be swiftly diagnosed with one ailment or another so that we can continue life without worrying.

Friday, March 6, 2015

I'm really starting to suffer with this feeling of bloating I have which is still being investigated by the hospital. I am struggling to find comfortable clothes but it's not worth buying new as all of this added weight should disappear as soon as the doctors have an accurate diagnosis.

Thursday, March 5, 2015

Plans are being arranged for a publicity photograph on Monday with the college. We have managed to secure 8-10 students to help with our charity motorcycle ride in April and as we now have T-shirts from all three charities, we want to give them a little newspaper coverage for their efforts.

Wednesday, March 4, 2015

The good news is that I my thyroid is fine. The bad news is that I have many more tests to come to determine the cause of my weight gain. The doctors are considering a condition known as cushing's syndrome - an illness usually associated with steroid use but it can also be triggered by other factors. I'm back at the hospital next Wednesday for some special blood tests but first I have to carry out various tests myself at home on Monday and Tuesday. Finally, we met with the QEHB charity today who kindly loaned us collecting buckets and wristbands for our charity ride.

Tuesday, March 3, 2015

With two hospital appointments on the horizon I am a little anxious. I should however discover what is leading to my weight gain as the results from my thyroid tests should be back. If the thyroid is clear then in should be a simple case of water tablets to clear the excess fluid I am carrying.

Monday, March 2, 2015

It's a year today since our first charity ride - and the weather has been awful again. As March has been terrible in weather terms again, it has reinforced our thoughts that our ride has to be held in April - or later. Meanwhile, I'll be helping the charity Anthony Nolan in the coming days as they launch a campaign to help dispel the myths surrounding stem cell donation.




Sunday, March 1, 2015

This coming week is going to be exceptionally busy as I have two appointments on Wednesday. Having to get to Birmingham for the first one at 9am will mean having to leave home before 7am. We are also meeting with the charity QEHB to discuss our BONE-shaker MARROW-thon motorcycle plans.

Saturday, February 28, 2015

There was a huge scooter event at the National Brewery Centre today so we popped along in the hope of attracting some extra riders to our fund-raiser in April. The good news is that our promotional banner for the ride is now on display for drivers to see.




Friday, February 27, 2015

Thankfully I am now fully recovered following the side-effects from my latest injections. I suffered 24-hours of feeling depreadful and expected to be returning to hospital but I managed to contol the fever and swollen arm myself at home.

Thursday, February 26, 2015

Thankfully I feel much better today - although my arm is badly swollen following the injection. It was a good job I was feeling better as we had an appointment at the National Brewery Centre with the blood bikers for a promotional photograph. A photo to partly promote our ride but also their services.

Wednesday, February 25, 2015

My predictions were correct. Throughout today I have felt increasingly worse following my injections yesterday. My temperature also spiked to 38.8 which put us on high alert for a possible hospital visit - thankfully I was able to reduce this with paracetamol tablets.

Tuesday, February 24, 2015

I have been back to the doctors again today for more injections. Today's jabs were another shot of pneumonia and diptheria. For some reason, these injections hurt more than previously - I may be in for a bad night.

Monday, February 23, 2015

I am starting to experience some timgling and pain in my scalp. The last time this happened, I was later diagnosed with shingles and was hospitalised. I really hope this is not the case this time.

Sunday, February 22, 2015

It may be Sunday but we had some positive feedback from Burton College today. We have asked them if any students may be interested in helping with street collections at our fund-raiser as we now have a licence from the council. Early indications suggest this may be happening.

Saturday, February 21, 2015

We always attract a high number of blood bikes at our charity ride and as they are now making more and more trips to the Queen's Hospital in Burton, we are planning a joint promotional photo this week. The photo if we can arrange it in time will be at the National Brewery Centre with some blood bikes and us with our new BONE-shaker banner.

Friday, February 20, 2015

The new online petition has started well and has already attracted a few hundred signatures. I know my original petition needed 100,000 signatures before anyone would take any notice and I suspect this one to be the same. The difficulty with an election on the horizon is that these signatures have to be gathered before the end of March.

Thursday, February 19, 2015

It's been a busy day on social media as the new petition regarding the cancer drugs fund was publicly launched. The petition is a joint initiative between leukaemia, bowel and prostate and kidney cancer charities.
Read about the campaign on the Leukaemia CARE website:

http://www.leukaemiacare.org.uk/news/keep-your-promise


Wednesday, February 18, 2015

There have been a few changes since I launched my petition calling for a reversal of the changes made to the cancer drugs fund.
My petition just concerned blood cancer patients and there were many other patients with different cancers fighting their own corners. After a few weeks of planning, it has been decided that one joint multi-cancer approach would be better and I have been asked to represent the leukaemia front. The new joint-charity joint-cancer petition officially launches tomorrow and you can add your name to the petition here:

https://you.38degrees.org.uk/petitions/keepyourpromise


Tuesday, February 17, 2015

The mystery over whether or not I have a hospital appointment tomorrow continues. I've come to the conclusion that without having official confirmation of an appointment, I'm not going to make the 70-mile round trip to Birmingham and waste time. When I next see my usual consultant I will let him chase up what's gone wrong.

Monday, February 16, 2015

I'm certain that I am meant to be seeing a new specialist on Wednesday. However, as I don;t have an appointment letter, I ventured into telephoning the hospital.
After speaking to four or five different people and sending an email, I'm still no further forward. The appointment is needed but at the same time I don't want to waste my time and money travelling to the hospital if I don;t have a slot booked.





Sunday, February 15, 2015

I'm coming to the end of my two week trial without taking my leukaemia drugs and unfortunately, I haven't noticed any difference. The doctors wanted to check if it was the tablets causing fluid retention but as there hasn't been any noticeable changes, it probably isn't down to them.

Saturday, February 14, 2015

Each day I now try and get out and about for a little fresh air and exercise. That is easier said than done at this time of year when the weather is so unpredictable but it is a regime I have been sticking to for the past couple of weeks.

Friday, February 13, 2015

This weekend marks the one-year anniversary since I was placed in remission from leukaemia. I will have been cancer-free for 12 months without any sign of relapse.
I may continue to suffer other side-effects, but at least I am well-clear of leukaemia.

Thursday, February 12, 2015

I've now done more than a week without taking any of my leukaemia tablets. This trial is to test if it is the tablets - Nilotinib - are causing water retention. After seven days I haven't noticed any changes which is unfortunate as I was hoping this may have answered some of my ongoing issues.

Wednesday, February 11, 2015

Today has all been about my charity motorcycle ride again as the publicity stories are appearing already in the pages of motorcycle magazines and websites. We are also 90 per cent of the way to securing a very special bike for the day of the ride. It will certainly attract a lot of attention if we can sort the deal in time. Meanwhile, Hardy Signs has supported my ride again by producing another amazing banner for us:





Tuesday, February 10, 2015
There has been some significant progress in relation to my charity motorcycle ride.
I've applied for a street collection licence which will allow us to collect money in charity boxes on the day and I've been liaising with the police with regard to the plans. A press release has also been arranged through a specialist PR agency, this will be sent to loads of motorcycle magazines.

Monday, February 9, 2015

It's usually me who is the patient but this week it's my husband who is booked in at the doctors, the hospital and the opticians. 
There has also been progress in relation to the online petition surrounding the Cancer Drugs Fund. It has been decided that the best way of securing a change of policy is if all of the various cancer charities join forces and campaign together. I have been asked to represent leukaemia patients.

Sunday, February 8, 2015

Organising our charity motorcycle ride takes many months of behind-the-scenes work. Today we have made a small impact on the huge list of tasks to complete in the next few months. Meanwhile, the numbers attending keeps increasing.
You can find details on the ride here:
http://www.boneshaker-marrowthon.com/boneshaker%20ride%20bars.htm

Saturday, February 7, 2015
I am enjoying not having to take some of my medication as it is giving me a break from fasting. My usual routine means I cannot eat for two hours before I take the tablet and for one hour after - giving me a window of three hours when I can only drink water. And I take those tablets twice a day so this takes up six hours of an average day.


Friday, February 6, 2015
Today marks the one year anniversary since I marked 100-days post transplant.
If you remember, reaching the 100-day milestone was a major achievement as this was the time frame when things were most likely to go wrong.


Thursday, February 5, 2015

I’ve been to the hospital again today for an appointment with my chest doctor. This was a follow-up appointment following some recent lung function tests I completed.
On the plus side, we now know that the breathing problems I had a few months ago were down to a viral infection which has now cleared.
What the results also show is that the weeks of chemotherapy and radiotherapy conditioning I underwent have permanently damaged my lungs. I have probably lost around 10 per cent of my lung function when you compare the results from my original tests before treatment and the results now.

Wednesday, February 4, 2015

On World Cancer Day I was back at the hospital. I'm going to stop taking my anti-leukaemia drugs for two weeks to see if they are causing fluid retention. I am due to see a specialist in two weeks' time so this trial will help formulate some results. I am also being referred to an eye doctor as I am starting to suffer with a few vision problems - another common side-effect of a transplant.


Tuesday, February 3, 2015

I'm preparing for my two days of hospital visits, especially as the weather man keeps warning of snow, ice and frozen conditions at every bulletin. Making the 70-mile round trip in the height of summer is easy, it just gets a little worrying in the winter time. Thankfully I think we should miss the worst of any weather.

Monday, February 2, 2015

Make sure you mark Wednesday in your diary - it's World Cancer Day.
This day enables people to unite around the World with one common theme - cancer.
To support the event in the UK, Cancer Research charity shops are selling special 'unity' wristbands for £2. My local charity shop has already sold out - has yours?

http://www.worldcancerday.org/


http://www.cancerresearchuk.org/support-us/donate/world-cancer-day?gclid=CKvzi76mxMMCFaSc2wodxicALA&dclid=CNTzrb6mxMMCFUidfAodt1wAQg



Sunday, February 1, 2015

The first of many publicity articles appeared in the press yesterday and already it is helping to spread the word. Physical numbers may not rise as a result immediately, but having an online story enables others to share the news on your behalf and reach a wider network of friends and supporters.

http://www.burtonmail.co.uk/Charity-bike-marathon-bigger-better-Burton/story-25952584-detail/story.html





Saturday, January 31, 2015
It's been nice to get out and about and enjoy a little fresh air as I spend the majority of my week indoors. This coming week promises to be busy and tiresome as I have morning appointments at the hospital on both Wednesday and Thursday. Wednesday is my normal blood clinic and Thursday is my follow-up appointment with the chest doctor.

Friday, January 30, 2015
My charity ride in April has gone from bubbling away in the background to being my main focus of effort. The first publicity stories start tomorrow in the Burton Mail and details have now been sent to most of the major bike magazines. We've already secured a listing for the event on a popular biking calendar and already the numbers are growing. We now have more than 150 people signed up to ride and the numbers tend to grow by two or three people every day. 

Thursday, January 29, 2015
Plans for my charity ride - the BONE-shaker MARROW-thon have stepped up a gear on the past 24 hours. Letters have now been sent to the police and Highways Authority plus I will soon be applying for the relevant council licences. In the meantime, my husband Stephen is sorting the publicity and motorcycle for the day.

Wednesday, January 28, 2015
I've suffered a few side-effects since my injections yesterday. Tuesday night was difficult as both my arms were quite painful. It was difficult to know how to lie as I had had injections in both arms. There is also some promising developments when it comes to action against the changes proposed to the Cancer Drugs Fund. It's too early to reveal the exact details but the developments sound promising.

Tuesday, January 27, 2015
I was back at the doctors today for another round of injections. On the menu for me was yet more inoculations for diphtheria,  tetanus, polio, meningitis and pneumonia.
I'm back again in a month's time to repeat the process again. 

Monday, January 26, 2015
I’ve received some feedback from the Department of Health regarding my campaign to see the display of food hygiene scores (known as Rate my Place or Scores on the Doors) compulsory.
I’m being supported in my campaign by the consumer agency Which? and before Christmas I wrote to the Minister for Public Health Jane Ellison. I’ve now been given an update by the Food Standards Agency and Ms Ellison has also encouraged me to write to the food safety team at my local authority. I’ll be putting pen to paper again in a few days.

Sunday, January 25, 2015
I’ve been out supporting a charity motorcycle ride today for a young cancer victim.
Brandon Carter died from skin cancer at the age of 27 in 2014 and it was his wish to ride on the back of a Harley-Davidson motorcycle. He fulfilled his wish last January before passing away. The ‘Dream Ride’ is now an annual event and I went along to take photographs of the riders. The ride raised more than £1,000 for cancer charities so was a huge success.
Plans are now coming along for my own charity motorcycle ride the BONE-shaker MARROW-thon which returns in 2015 on Sunday, April 19th.
http://www.boneshaker-marrowthon.com/welcome%202015%20ride.htm

Saturday, January 24, 2015
My team of marathon runners are busy trying to raise funds so that they hit their minimum sponsorship target by April. They have now nearly raised half of what they need and so plans are in the pipeline for a charity night at a pub and another body combat session in March.
Please donate and help them reach their target for Anthony Nolan
https://www.justgiving.com/Run4Katherine/

Friday, January 23, 2015
My mouth is still sore so I am still having to resort to prescription-strength mouthwash to ease the pain. You'd think it would only be spicy foods which caused the stinging sensation but I'm finding I can eat certain spices without any pain and then the plainest of foods sets my mouth on fire.

Thursday, January 22, 2015
Today, completely without warning, my mouth has developed soreness. I have had to resort to using some of the prescription-strength mouthwash I was issued when I first left hospital. I have prided myself on not having to use this much but today I was left without a choice. I just hope the various niggles I am currently experiencing are not late bouts of GvHD - a condition whereby your donor cells starts to attack your own body.


Wednesday, January 21, 2015
After my dealings with the doctors earlier this week, I've now got my prescription to help ease some of the pain and discomfort I have been suffering in recent weeks. I just hope it is fast-acting as standard pain-killers have been of little use.


Tuesday, January 20, 2015

I've been in touch with my GP today after days of pain and discomfort - I'm hoping the prescription that's waiting for me is the answer to my problems.
Aside from my grumbles, I'm pleased to say that stamps are still arriving on a daily basis for my campaign and signatures are slowly being added to my Cancer Drugs Fund petition.

Monday, January 19, 2015

I've been suffering pretty much daily for the past three weeks or so with bouts of pain and discomfort. I've tried pain killers and I've given things time to right themselves naturally but I think it's time to pay a visit to the GP. Hopefully I can get an appointment to be given the once over in the next couple of days.

Sunday, January 18, 2015
My online petition regarding the Cancer Drugs Fund is slowly progressing. It received a boost today thanks to a couple of television personalities using Twitter to promote the web link. As we need 100,000 signatures before someone takes notice of the issue, every signature counts - especially as you yourself may count on these de-listed drugs one day.

http://epetitions.direct.gov.uk/petitions/73868

Saturday, January 17, 2015
I'm continuing to receive stamps and donations through the post - thank you for saving them for me over the Christmas period. Last week I posted a hefty box of stamps to Leukaemia CARE and already I have enough to send another sizeable donation. Your stamps help the charity maintain a 24/7 helpline for patients and their families.


Friday, January 16, 2015

My petition has been approved and is now online. i now need to find 100,000 signatures so please sign and share. Share it with your friends, neighbours and work colleagues as it is only through widespread sharing and the power of social media that we will hit the 100,000 mark.
http://epetitions.direct.gov.uk/petitions/73868

Thursday, January 15, 2015

After a little deliberation and some useful guidance from the charity Leukaemia CARE, I have submitted an online petition. If approved, the petition calls for the Cancer Drugs Fund panel to re-analyse its findings surrounding certain de-listed blood cancer drugs. There may be cheaper and newer drugs on the market, but the ones which have been de-listed are tried and tested and proven to be effective. Once the petition is approved and online, please sign it in support.

Department of Health

Call for reassessment of the Cancer Drugs Fund for blood cancer patients
This is a petition on behalf of blood cancer patients who are concerned about the recent changes made to the Cancer Drugs Fund.
It was announced on Monday, January 12, 2015, that life-extending cancer drugs are to be removed from a list of medicines that are approved for funding via the Cancer Drugs Fund.


This petition calls specifically for a rethink over the de-listing of the following drugs:
Bosutinib and Dasatinib for blast-phase Chronic Myeloid Leukaemia;
The de-listing of Bortezomib for relapsed Myeloma, Mantle-Cell Lymphoma and Waldenstrom Macroglobulinemia;
The de-listing of Bendamustine for non-Hodgkin Lymphoma;
The de-listing of Ofatumumab for relapsed or refractory Chronic Lymphatic Leukaemia;
A re-analysis of the decision to reject Vemurafenib for all Hairy Cell Leukaemia patients and also a re-analysis of the rejection of Idelalisib for Chronic Lymphatic Leukaemia.

Wednesday, January 14, 2015

I've been looking closer at the Cancer Care Fund since changes were announced earlier this week. I am now consulting with a couple of leukaemia charities so that the true impact of the changes can be monitored. I'm interesting in starting an online petition to call for a re-think on some of the drugs, but before this can happen, I need a better idea of patient numbers and costs. There are a couple of areas causing me concern but it's too complicated an area to jump in with both feet until further research has been carried out.

Tuesday, January 13, 2015

You've probably seen the news surrounding the changes to the Cancer Drugs Fund.
It's wrong to say I am lucky, but my current medication doesn't fall under the remit of this fund. However, if this medication I take ever stops working - which it could as my last medication stopped working - then I am firmly into Cancer Drugs Fund territory.
I welcome the extra investment being pumped into the fund but the axing of certain life-prolonging drugs leaves me worried. Who is to say what drugs will be axed when the review body meets next time? Should pound signs play such an integral part when deciding the best medication to treat a patient?





Monday, January 12, 2015

Did you see my home from home on the television tonight? The BBC One show Inside Out ran a very interesting feature on organ donation - an issue very close to my heart.
The hospital at the centre of the programme was the Queen Elizabeth Hospital in Birmingham and the doctor who was the main focus was my chest consultant.
Being so familiar with the hospital and its doctors must show I spend far too much time in Birmingham.


Sunday, January 11, 2015
I'd like to say a big thank you to everyone who came along today and supported my marathon runners as they held a body combat session. Over the next few months there will be lots of little fund-raising events taking place as the runners need to hit their target before April. Please let me know if you'd like to help or donate.
https://www.justgiving.com/Run4Katherine





Saturday, January 10, 2015
My team of marathon runners are in action tomorrow as they try and raise a few more pounds to help enable them to hit their London Marathon sponsorship target. We've got just four months left to help them raise another £4,000 so the three runners hit their minimum entry total of £5,550.
It's a tough challenge and that is before they even think about the run itself.


Friday, January 9, 2015
I posted the latest batch of used stamps to the charity Leukaemia CARE today. Readers listened to my pleas for stamps over the Christmas period and they have been flooding in along with some special first-day Royal Mail covers. This latest batch should be worth fair few pounds to the charity.
Thank you.


Thursday, January 8, 2015
I'm not sure whether I should be waiting on tenterhooks for the hospital to call me following yesterday' blood tests or if I'll just learn about them at my next appointment.
If the thyroid test does show I need medication to bring either an over-active or under-active gland back to normal, I'd like to start taking the relevant tablets as soon as I can.
I'm not particularly worried about the results because it is just one of a massive list of problems I am likely to encounter - and anything is better than having leukaemia. 


Wednesday, January 7, 2015

It's been a very busy and tiring day at the hospital. The lung function test appeared to go well and I know that the results are better than the last time I did the test which is a promising step.
Over the past few months, I've noticed that I am gaining weight without reason and this is now being investigated. One of the side-effects of my tablets is water retention and this is one possible cause. Another side-effect of both the medication and the transplant itself is thyroid problems - both under-active and over-active. I've had extra blood samples taken today so that my thyroid can be monitored and corrected with medication if required. 


Tuesday, January 6, 2015

As I'm at the hospital tomorrow, I'm having a day of anxiety today. I still get extremely nervous in the run-up to my appointment as so much hangs on the results of just a simple blood test. It's likely to be a long day as I have to also squeeze in a lung function test for my chest consultant plus I need a wheelbarrow full of drugs.

Monday, January 5, 2015

As Christmas now officially draws to a close, I'd like to thank the many readers who either sent me cards, letters or donated stamps. You have followed my journey since my diagnosis in 2013 and continue to support me and the charities I support. I touched your hearts and now your kindness is touching mine.

Sunday, January 4, 2015

I keep having occasional bouts of heartburn. I have never suffered from heartburn before but in the past few months I keep having instances after eating certain foods. I can only assume this issue is side-effect of my tablets reacting with certain foods.

Saturday, January 3, 2015

Everything gears back to full speed next week as many services scaled-down over Christmas return to normal. It's back to the hospital on Wednesday for two appointments. I have my routine clinic appointment as well as a lung function test as my recurrent chest problems continue to be monitored.

Friday, January 2, 2015

Another day and yet another blood cancer death hitting the headlines. This time it is Deborah Bone - the lady who inspired the Jarvis Cocker/Pulp hit Disco 2000 in 1995. Deborah died from multiple myeloma - a form of blood cancer which affects plasma in bone marrow. The attention this death is receiving because of the Jarvis Cocker link will hopefully help to raise awareness and funds for blood cancer charities. 

Thursday, January 1, 2015
It is meant to be a happy New Year but in the past 24 hours I have heard of the deaths of three people from leukaemia - two of whom had the same CML strain which I was diagnosed with.
The entertainment world is mourning the loss of Christine Cavanaugh. Maybe not a name which springs to mind for many of you but you will know her voice.
She was the voice of Babe the Pig and Chuckie from the cartoon Rugrats.