Wednesday, December 31, 2014
As the year draws to a close, I can reflect on how 2014 has been a phenomenal year for me.
Admittedly, I've had to have two hospital admissions - one for pneumonia and one for shingles - but this a remarkable improvement on the third of a year I spent in hospital in 2013.
As I'm now being re-vaccinated, I'm hopeful hospital admissions will become a thing of the past.
2014 has also been a busy year for my charity work as I've been working closely with both Anthony Nolan and Cure Leukaemia in recent months to help raise funds and stem cell donors.
I've already started to plan 2015 and so my work in this field continues. Just because I may be clear of leukaemia doesn't mean I'm giving up on the charities. Everything I do is geared to benefit others in my position rather than to be of benefit to myself.
Tuesday, December 30, 2014
I've been to the doctors today for the first stage of my re-vaccination against diphtheria, tetanus, pertussis, polio, pneumonia and meningitis.
I am having low-dose vaccines which means these injections will be repeated again at the end of January and then again in February. I'm then also in line for further pneumonia vaccines before it will be time to have the flu jab again.
Monday, December 29, 2014
It's the doctors for me again tomorrow night as I'm due my next batch of vaccinations.
I haven't had the best of days today which doesn't bode well if I do suffer a raft of side-effects from the meningitis, polio and pneumonia jabs I am set to receive.
The countdown then begins again tomorrow for when I have to repeat these injections again in a few weeks, and then again once more after that.
Sunday, December 28, 2014
In the days between Christmas and New Year, people start to think up their resolutions for the year ahead. My resolutions are simple - continue on the road to recovery and continue to support the charities who have helped me over the past months.
Saturday, December 27, 2014
I've packed all of my energy into the past two days and now I am shattered. I feel as though I could sleep for a week. Two consecutive days of hustle and bustle is all I can handle nowadays without me needing time to recharge my batteries.
Friday, December 26, 2014 - Boxing Day
This time last year I was still in the very early stages of my recovery. very weak and very tired but trying the best I could to soak up the festive spirit.
This year will be equally memorable for the snow blizzard which forced us to endure a three-hour car journey in treacherous conditions. It's not an experience I'd want to repeat in a hurry but it has created memories.
Thursday, December 25, 2014 - Christmas Day
Christmas Day is a time when we begin to reflect on events of the past 12 months. Leaving my health aside, this year has been phenomenal with me being shortlisted for a Pride of Britain Award plus me taking home a host of charity accolades. I have some really big plans and projects in mind for the coming year so who knows what I may be writing this time in 12 months time.
Wednesday, December 24, 2014 - Christmas Eve
I've been suffering with a few sudden, sharp pains in my right side today.
I haven't been able to pinpoint the exact source of the problem - I'm keeping an eye on whether it could be a pain in my kidney. I'm not overly worried - the sudden stabbing pains are more of an annoyance than a concern.
Tuesday, December 23, 2014
Today should have been the day to have my second batch of vaccines including pneumonia and meningitis. However, as the threat of possible side-effects just two days before Christmas caused me a spot of worry, I took the decision to postpone them by a week. The injections are important, but not at the risk of ruining Christmas as I didn't have much of one to celebrate last year.
Monday, December 22, 2014
It may be getting close to Christmas but my campaigning continues.
I've mentioned before how I have joined forces with consumer experts Which? as I press for changes to food hygiene regulations. Having already gathered support from Burton MP Andrew Griffiths, I have now been armed with the facts and figures I need from Which? to start the ball rolling with Government Ministers. Watch this space.
Sunday, December 21, 2014
The busy days in the run-up to Christmas are starting to take their toll. Although my energy levels have vastly improved over the past 12 months, they are not what you could describe as 'normal'. This is more prominent now as the days and nights get increasingly busy in the festive build-up.
Saturday, December 20, 2014
Following on from the success of the Anthony Nolan donor recruitment event at Burton and South Derbyshire College, I am now on the hunt for other establishments keen to bolster the numbers on the register. I'm keen to hear from any sixth form centres or large businesses with a predominantly 16-30 workforce who would be keen to run similar schemes.
Friday, December 19, 2014
My messages about saving your used stamps for Leukaemia CARE have been well received as I continue to receive plenty of donations. Christmas is probably the only time of year when we all send and receive vast quantities of mail and so this is an ideal opportunity to raise cash for charity without it costing you a penny.
Thursday, December 18, 2014
As Christmas draws closer the generosity of my followers continues. i've received yet more questions today about where people can donate money. Although I support many blood cancer charities, I am urging people this festive season to support the charity Cure Leukaemia who are based in Birmingham. Alternatively, just join the Anthony Nolan bone marrow register or save your old stamps for Leukaemia CARE.
Wednesday, December 17, 2014
My chest doctor has been in touch with a date for a follow-up appointment which shows the issue is being taken very seriously. The plan is for me to undertake some breathing tests so that the specialists can compare my lung results from before the transplant and when I was last very ill with my breathing to see what drop in performance I have experienced since transplant.
Tuesday, December 16 2014
The Anthony Nolan team returned to Burton and South Derbyshire College today with their spit-kits to recruit donors who had been inspired by last week's talks.
I popped in to check on progress and was pleased to see a slow but steady stream of students showing an interest.
There is a lot of hope that this project at the college can become a regular event which will help build up interest over time,
Monday, December 15, 2014
I've been extremely tired today. I think my three separate visits to Birmingham last week are starting to catch up with me. I need to revitalise as tomorrow is a very important day at Burton College as the Anthony Nolan charity is returning to sign up any interested students.
Sunday, December 14, 2014
I have to say a big thank you to all of my loyal followers and supporters who have sent me Christmas cards. Many of you have also sent stamps for my collection for Leukaemia CARE and I've had a couple of questions on how to donate money to the charities I support. I would like to thank you for your continued support and interest in my recovery from leukaemia.
Saturday, December 13, 2014
All week, a team of Anthony Nolan volunteers have been speaking to pupils at Burton and South Derbyshire College about becoming a stem cell donor and its importance in saving lives. The volunteers spoke to around 150 students each day as they held 27 special tutorial classes. I just hope these talks help turn students' interest into names on the register.
Friday, December 12, 2014 Today I have working alongside former international footballers Lee Hendrie and Geoff Thomas as well as some big names in cricket. The charity Cure Leukaemia was one of three charities going head-to-head for votes for a major funding stream from Brindley Place in Birmingham. Our campaigning paid off as Cure Leukaemia won the vote. The tens of thousands of pounds they will now receive will save many lives. Thursday, December 11, 2014 My visit to the chest specialist went well. Further investigations will now be carried out to determine the quality of my lungs with a lung function test. The problems I have experienced could be down to scarring and damage caused by the intensive chemotherapy and radiotherapy I have received over the past 18 months. I'm just happy that it's nothing more sinister causing my intermittent problems. Wednesday, December 10, 2014 Getting to a hospital the other side of Birmingham for 9am tomorrow is going to be a bit of an eye-opener but that's what I need to do if I am to get my chest examined. Over the past couple of days, the pains I experienced daily last week have started to subside. Tomorrow could just be a quick check-up or it could involve all manner of tests, scans and x-rays. I'm expecting a busy day. Tuesday, December 9, 2014 Now that most houses have their Christmas lights in place, the next job on the agenda is writing the cards. That's why I am relaunching my used stamp collection for the charity Leukaemia CARE. All households receive far more mail at this time of year and I just want your used stamps for charity. You've already helped raise more than £1,000 through your stamp collections but I am certain this Christmas that we can give this total a mighty boost. Monday, December 8, 2014 The Anthony Nolan recruitment event started today at Burton and South Derbyshire College. In this first day, the charity's volunteers have spoken to 175 students - so by Friday, the event could be close to addressing 1,000 potential life-savers. It's pleasing to see the event finally come to fruition as planning started for this day in July. Sunday, December 7, 2014 Today I was in Birmingham supporting another charity - St Mary's Hospice. The hospice was holding its first 'jingle jog' around a park where participants dress up as Santa and I wanted to go along to show my support. I've heard many great things about the hospice from the nurses who treated me in Birmingham which was one of the reasons for me supporting the event today. Saturday, December 6, 2014 This coming week is going to be extremely busy. The Anthony Nolan recruitment event at the college begins on Monday, I am helping Cure Leukaemia later in the week with a video and then on Friday I am helping Cure Leukaemia again as it strives to secure a big deal with Brindley Place in Birmingham. Friday, December 5, 2014 I am beginning to look forward to my hospital appointment next week as I really need to have my chest pain checked out. The pain is intermittent which rules out quite a few possibilities. However the last thing I want to happen this close to Christmas is for me to be admitted to hospital. Thursday, December 4, 2014 My intermittent chest pain continues. Thankfully I don't have the breathing difficulties I had the last time I experienced such discomfort. I've even considered the possibility that it could be something as simple as heartburn caused by my medication. With hospital appointments on the horizon next week I don't have long to wait to get it checked out. Wednesday, December 3, 2014 A few months ago I mentioned how I was supporting a group of people in Sri Lanka to start up a leukaemia support charity. You'll be pleased to learn that interaction with Sri Lanka continues and my first overseas Christmas card arrived from one of the group today - they are so thankful and appreciative. Tuesday, December 2, 2014 I keep experiencing occasional chest pains, similar to pains I had when I was admitted with pneumonia a few months ago. Thankfully I see the chest doctor next week should the problem continue - however, I'm really keeping my fingers crossed that it is nothing to worry about and that it subsides soon. Monday, December 1, 2014 Tomorrow, is Giving Tuesday, a national day of generosity. It's a way to give something back whether that's joining in with some of the 'selfie' challenges being invented, recycling your used stamps or signing up to an organised event. With Christmas on the horizon it's easy to think of presents and indulgence, but it should also be a time to think about a charity which one day may save your life. I wouldn't be here without the efforts of charities. Sunday, November 30, 2014 On the weekend closest to December 1, I always like to put the Christmas decorations in place. Last year I had only just been discharged from hospital and so we managed with minimal fuss as I felt awful. I'm going to make up for it this year and hope to have a proper Christmas this time around. |
Saturday, November 29, 2014
I keep having bouts of excruciating cramp in my toes. At first I just accepted it as an inconvenience but I've been doing some research and it appears this cramp is a side-effect of my transplant. According to an advice booklet produced by the Anthony Nolan charity, these cramps may last years and could be caused by dietary or vitamin deficiencies or through medication. Quinine is supposed to help.
Friday, November 28, 2014
I may have spoken too soon about my lack of side-effects from the flu jab I had on Tuesday. I keep experiencing bouts of feeling very hot and then very cold. Almost like a fever but my body temperature doesn't change it's just that I feel different.
Thursday, November 27, 2014
I haven't suffered any ill-effects following my first post-transplant vaccination which is a promising start.
Meanwhile, plans are coming together for what will be a huge stem cell donor recruitment drive in Burton in the coming weeks. i hope to be able to reveal more next week when the action plan has been finalised.
Wednesday, November 26, 2014
Television can play a pivotal role in helping to raise awareness of leukaemia and increasing stem cell donor levels. Today it was the Surprise Surprise show which thrust leukaemia into the spotlight with a tear-jerking story of a lady who has battled aplastic anaemia and lymphoma.
What television does is make people realise that their 'ordinary' lives today could be filled with the nightmare which is leukaemia by tomorrow.
Tuesday, November 25, 2014
I've had my first vaccine today following my transplant. Today was just the normal flu vaccine via injection - many of you may have had the nasal version but that strain is too dangerous for me.
Plans are also falling in place for the mass donor recruitment session we have been planning for Burton & South Derbyshire College for many months.
Monday, November 24, 2014
The postman delivered a very important parcel today - tablets.
We mis-calculated the last time we visited the hospital and wrongly assumed I had enough tablets to last until my next appointment. Thanks to the power of email and a superb team in Birmingham I'm now fully re-stocked and have enough pills to last come rain, snow or shine.
Sunday, November 23, 2014
This coming week marks the next stage of my recovery from leukaemia as I begin the re-vaccination programme. This week I have diphtheria, tetanus, meningitis, pneumonia, polio and possibly the flu vaccine to have - and they'll all be repeated again next month, and the month after and then a few months after that.
Saturday, November 22, 2014
I've been asked today to help in any way I can to find a matching donor for a young girl suffering with aplastic anaemia.
Anna Leigh is a five-year-old girl from South Carolina who needs a matching donor to save her life. The good news is that you don't have to live in the USA to help as you could be a matching donor if you sign up in the UK today.
Friday, November 21, 2014
Today it was 'Hero Day' for the charity Anthony Nolan. It doesn't require you to possess super powers - or dress as Superman (but this helps). It's a day when everyone comes together to be a hero. That can be anything from shaking a tin to collect money or baking cakes to sell to raise funds. My super powers rest in raising awareness, which was done alongside sorting out the final bits of organising for a donor recruitment event to be held next month at Burton and South Derbyshire College.
Thursday, November 20, 2014
Twelve months ago I was finishing my last full day in hospital before being discharged following my transplant. Looking back, I felt as rough as you can possibly imagine but a I was just thrilled to be heading home.
A year down the line and I'm still not 100 per cent as I still have days when I struggle, or lack energy, or just feel rotten. In another 12 months time I will probably look back on today and realise how different I feel with yet another year under my belt.
Nobody said that this would be a quick or easy road but I'm so grateful to be writing this diary another year down the line.
Wednesday, November 19, 2014
I struggled today climbing up a steep incline - an experience which left me extremely frightened.
What I keep having to remind myself is that I am not super-woman. A year ago I could barely manage the stairs without assistance and I have to appreciate it will take many more months, if not years, to recover fully from my leukaemia battle.
Tuesday, November 18, 2014
I support many charities but that doesn't mean I have to agree with everything they do. A few months back I made a charity donation via text - and today I received a call to my mobile asking me to pledge £10 a month.
What's annoyed me is that the telephone call was from a third-party agency hired by the charity at a cost of more than £7,000 for the campaign.
Dear charity, we will all give what we can to help, so please don't waste the donation I gave you on a five minute marketing call.
Monday, November 17, 2014
I've spoken to my doctors today and things are moving forward with my vaccines. I have my first injections next week. This will be the first major step in rebuilding my fragile immune system.
Sunday, November 16, 2014
Today I was in Birmingham supporting my ever-growing number of biker comrades.
A charity ride was taking place to raise money for specialist equipment for disabled children, and as the ride required riders to wear a 'onesie' and as it passed by the city's German Market, it was an opportunity too good to miss. I like to support all of those people who regularly support me, and the bikers we know are part of this loyal band of supporters.
Saturday, November 15, 2014
A scary experience with a meal today has reinforced my commitment to change rules surrounding food hygiene. Did you know it's law for a restaurant to display a 'no smoking' sign but there are no rules governing the display of food hygiene ratings?
I want to change this legislation and I've already joined forces with consumer watchdog Which? to help bring this to fruition.
Friday, November 14, 2014
Thursday, November 13, 2014
Wednesday, November 12, 2014
Tuesday, November 11, 2014
Monday, November 10, 2014
Sunday, November 9, 2014
Saturday, November 8, 2014
Friday, November 7, 2014
Thursday, November 6, 2014
Wednesday, November 5, 2014
Tuesday, November 4, 2014
Monday, November 3, 2014
Sunday, November 2, 2014
Saturday, November 1, 2014
I keep having bouts of excruciating cramp in my toes. At first I just accepted it as an inconvenience but I've been doing some research and it appears this cramp is a side-effect of my transplant. According to an advice booklet produced by the Anthony Nolan charity, these cramps may last years and could be caused by dietary or vitamin deficiencies or through medication. Quinine is supposed to help.
Friday, November 28, 2014
I may have spoken too soon about my lack of side-effects from the flu jab I had on Tuesday. I keep experiencing bouts of feeling very hot and then very cold. Almost like a fever but my body temperature doesn't change it's just that I feel different.
Thursday, November 27, 2014
I haven't suffered any ill-effects following my first post-transplant vaccination which is a promising start.
Meanwhile, plans are coming together for what will be a huge stem cell donor recruitment drive in Burton in the coming weeks. i hope to be able to reveal more next week when the action plan has been finalised.
Wednesday, November 26, 2014
Television can play a pivotal role in helping to raise awareness of leukaemia and increasing stem cell donor levels. Today it was the Surprise Surprise show which thrust leukaemia into the spotlight with a tear-jerking story of a lady who has battled aplastic anaemia and lymphoma.
What television does is make people realise that their 'ordinary' lives today could be filled with the nightmare which is leukaemia by tomorrow.
Tuesday, November 25, 2014
I've had my first vaccine today following my transplant. Today was just the normal flu vaccine via injection - many of you may have had the nasal version but that strain is too dangerous for me.
Plans are also falling in place for the mass donor recruitment session we have been planning for Burton & South Derbyshire College for many months.
Monday, November 24, 2014
The postman delivered a very important parcel today - tablets.
We mis-calculated the last time we visited the hospital and wrongly assumed I had enough tablets to last until my next appointment. Thanks to the power of email and a superb team in Birmingham I'm now fully re-stocked and have enough pills to last come rain, snow or shine.
Sunday, November 23, 2014
This coming week marks the next stage of my recovery from leukaemia as I begin the re-vaccination programme. This week I have diphtheria, tetanus, meningitis, pneumonia, polio and possibly the flu vaccine to have - and they'll all be repeated again next month, and the month after and then a few months after that.
Saturday, November 22, 2014
I've been asked today to help in any way I can to find a matching donor for a young girl suffering with aplastic anaemia.
Anna Leigh is a five-year-old girl from South Carolina who needs a matching donor to save her life. The good news is that you don't have to live in the USA to help as you could be a matching donor if you sign up in the UK today.
Friday, November 21, 2014
Today it was 'Hero Day' for the charity Anthony Nolan. It doesn't require you to possess super powers - or dress as Superman (but this helps). It's a day when everyone comes together to be a hero. That can be anything from shaking a tin to collect money or baking cakes to sell to raise funds. My super powers rest in raising awareness, which was done alongside sorting out the final bits of organising for a donor recruitment event to be held next month at Burton and South Derbyshire College.
Thursday, November 20, 2014
Twelve months ago I was finishing my last full day in hospital before being discharged following my transplant. Looking back, I felt as rough as you can possibly imagine but a I was just thrilled to be heading home.
A year down the line and I'm still not 100 per cent as I still have days when I struggle, or lack energy, or just feel rotten. In another 12 months time I will probably look back on today and realise how different I feel with yet another year under my belt.
Nobody said that this would be a quick or easy road but I'm so grateful to be writing this diary another year down the line.
Wednesday, November 19, 2014
I struggled today climbing up a steep incline - an experience which left me extremely frightened.
What I keep having to remind myself is that I am not super-woman. A year ago I could barely manage the stairs without assistance and I have to appreciate it will take many more months, if not years, to recover fully from my leukaemia battle.
Tuesday, November 18, 2014
I support many charities but that doesn't mean I have to agree with everything they do. A few months back I made a charity donation via text - and today I received a call to my mobile asking me to pledge £10 a month.
What's annoyed me is that the telephone call was from a third-party agency hired by the charity at a cost of more than £7,000 for the campaign.
Dear charity, we will all give what we can to help, so please don't waste the donation I gave you on a five minute marketing call.
Monday, November 17, 2014
I've spoken to my doctors today and things are moving forward with my vaccines. I have my first injections next week. This will be the first major step in rebuilding my fragile immune system.
Sunday, November 16, 2014
Today I was in Birmingham supporting my ever-growing number of biker comrades.
A charity ride was taking place to raise money for specialist equipment for disabled children, and as the ride required riders to wear a 'onesie' and as it passed by the city's German Market, it was an opportunity too good to miss. I like to support all of those people who regularly support me, and the bikers we know are part of this loyal band of supporters.
Saturday, November 15, 2014
A scary experience with a meal today has reinforced my commitment to change rules surrounding food hygiene. Did you know it's law for a restaurant to display a 'no smoking' sign but there are no rules governing the display of food hygiene ratings?
I want to change this legislation and I've already joined forces with consumer watchdog Which? to help bring this to fruition.
Friday, November 14, 2014
I've been given a copy of the vaccination schedule I will be following
over the next few months now that I am one year post-transplant. I should soon
be having the flu vaccine alongside the diphtheria, tetanus, polio, meningitis
and pneumonia jabs.
My vaccines must be lower doses so diphtheria, polio and tetanus are done monthly for three months - I can't just have one injection and move on.
My vaccines must be lower doses so diphtheria, polio and tetanus are done monthly for three months - I can't just have one injection and move on.
Thursday, November 13, 2014
Today was the World's first Pancreatic Cancer Awareness Day - if you
paid attention you may have seen TV presenters or newsreaders wearing purple
items of clothing as a sign of their support. I had reason to visit Birmingham
again today, and by chance, we met the entire team from the charity Cure
Leukaemia. We can't go far now without meeting someone we know.
Wednesday, November 12, 2014
My hospital appointment went well. My blood results are still fine and
they're not thinking of taking another bone marrow biopsy until early next
year. It's a huge relief once I have been to the hospital and heard the
results, I'm just very nervous beforehand.
Tuesday, November 11, 2014
I'm still waiting to hear about my re-vaccination schedule now that I am
one year post-transplant.
I'm hoping wheels are put in motion soon so that I benefit from the added protection vaccines offer. Tomorrow it's back to Birmingham for my usual blood tests and consultations.
I'm hoping wheels are put in motion soon so that I benefit from the added protection vaccines offer. Tomorrow it's back to Birmingham for my usual blood tests and consultations.
Monday, November 10, 2014
My spleen pain has now subsided but I'll still be getting it checked out
on Wednesday at the hospital. Although every visit to the hospital gives me the
frights because I never know what they are going to say, I always feel a huge
sense of relief afterwards.
Sunday, November 9, 2014
After a night and another morning of pain in my spleen, I'm pleased to
report that the discomfort has started to subside. I'm due back at the hospital
on Wednesday and this issue is going to be top of my agenda. Even in remission,
you don't get many days when you can completely relax and forget leukaemia.
Saturday, November 8, 2014
I keep having spasms of pain around my spleen which is worrying.
With leukaemia, the spleen often becomes enlarged as this is where
excess white blood cells congregate. My spleen is now back to normal size but I
sometimes wonder if months of being swollen has left it weakened and prone to
discomfort.
Friday, November 7, 2014
Living with a compromised immune system has made me reconsider many
things and one of my latest campaigns concerns food hygiene. It's too early to
reveal the full details, but today I received support from a very well-known
organisation. I think the resulting partnership could be very big news in the
coming weeks.
Thursday, November 6, 2014
Over the past 12 months, my social media presence has grown at a rapid
pace.
The downside to this, is the more people I interact with, the more
tragic stories I hear.
In the past two weeks I have heard about the deaths of five people I
followed and communicated with on a regular basis. You can't forget for one
second, that blood cancer kills people.
Wednesday, November 5, 2014
For the past few days I have been wading through various pieces of
legislation as I consider my next move to increase blood, stem cell and organ
donation. Turning ideas into reality takes months of work behind the scenes but
hopefully there will be some positive news to report soon.
Tuesday, November 4, 2014
The drug regulator NICE often hits the headlines for the wrong reasons -
but today it's positive news for leukaemia patients with chronic lymphocytic
leukaemia - CLL.
This doesn't affect my treatment as I had CML not CLL, but it's really encouraging
to see a breakthrough tablet which costs £182 per 100mg given the green light -
and it's British, made by GlaxoSmithKline.
Have I mentioned one of my magic drugs cost £37,711 for a year's supply?
Drugs aren't cheap but they save lives.
Monday, November 3, 2014
As I have passed my one year post-transplant birthday, the time has come
for me to start organising my re-vaccination schedule. I need just about
everything you all had as children - measles, TB, etc along with flu and
pneumonia vaccines. Having so many vaccines in a short time-scale of just a few
weeks could lead to some side-effects, we'll have to wait and see what
happens.
Sunday, November 2, 2014
As I promised before, my campaigning doesn't end just because I have
collected a number of awards - if anything it will increase. I have a few
political issues I will be addressing as well as pressing ahead with plans for
my mass Anthony Nolan recruitment event which is earmarked for Burton and South
Derbyshire College in December.
Saturday, November 1, 2014
Today marks the start of Pancreatic Cancer Awareness Month, and in
memory of my mum who died from pancreatic cancer in 2011, I am supporting the
campaign this year. The charity Pancreatic Cancer UK was holding a 'purple
lights' event today which involved lighting the sky purple - I took part in my
own little way with some purple glow sticks.
Friday, October 31, 2014
After a busy week attending various award ceremonies, I’ve returned home with yet another accolade. Today was the Cure Leukaemia charity ball and I was crowned ‘Champion of the Year’ – returning with a stunning engraved crystal vase.
We attended this charity ball held at Villa Park last year while I was still undergoing treatment so it’s great to be able to return feeling so much better – thanks in part to the efforts of the charity Cure Leukaemia.
Thursday, October 30, 2014
This week I've received another large donation of used stamps for my Leukaemia CARE appeal - huge thanks to reader Iris Mullis. As the season for traditionally sending more cards and letters is on the horizon, can I remind everyone that the appeal is still active. We have already raised more than £1,000 and Christmas card postage will hopefully give this figure a real boost.
Wednesday, October 29, 2014
I celebrated my first birthday today. This may sound strange to many people as you know I’m actually 34-years-old.
My birthday today marks the one year anniversary since I received my stem cells from a mystery German donor. A transplant gives you a new lease of life and can change many aspects of your past life (your blood type, hair colour, appetite etc), therefore its classed by many as a re-birthday. When I reach two-years-old, the mystery surrounding my donor can be lifted and we can make contact if we wish.
Meanwhile, today marks exactly three years since the passing of my sister-in-law. Cancer is never far away from any of us.
Monday, October 27, 2014
I've had an exhausting but exciting day in London. It's
been a real privilege to be given a guided tour of the Houses of Parliament by
MP Andrew Griffiths and his PA Sarah Bridgman.
During our visit to the Commons, Prime Minister David
Cameron made a short but memorable speech on British forces leaving
Afghanistan, plus he told the EU Britain will not pay its demand for £1.7bn -
we were sat opposite in the gallery as this speech was made. The awards at the
end of the day were the icing on a very enjoyable cake.
My husband and I travelled down to London today in preparation for the Anthony Nolan Awards tomorrow. I'm good friends with quite a few people linked to the Anthony Nolan charity through Twitter and Facebook and tomorrow will also prove a good opportunity to meet these people in person.
Saturday, October 25, 2014
I'm preparing for my big trip to London in preparation for the Anthony Nolan supporter awards which will be held at the Houses of Parliament on Monday. These awards are big news for Burton as both my husband and I plus our MP Andrew Griffiths are shortlisted for one of these prestigious accolades.
Friday, October 24, 2014
I'm preparing my next charity campaign - but this time it won't be for a blood cancer charity.
Three-and-a-half years ago my mum died of pancreatic cancer and as November is Pancreatic Cancer Awareness Month, I've decided I need to turn things purple to show my support. I'll reveal more about my plans in the coming weeks.
I'm preparing my next charity campaign - but this time it won't be for a blood cancer charity.
Three-and-a-half years ago my mum died of pancreatic cancer and as November is Pancreatic Cancer Awareness Month, I've decided I need to turn things purple to show my support. I'll reveal more about my plans in the coming weeks.
Thursday, October 23, 2014
It was the first of my award ceremonies today as I was shortlisted for a 'Best in Care' Award from the Queen Elizabeth Hospital in Birmingham.
I wasn't the overall winner of my category but I walked away with a certificate and badge honouring my contribution. It was a great event with some truly wonderful medical staff rewarded for their work. The hospital is a world leader in so many ways.
Wednesday, October 22, 2014
I've been working myself up for a while about this, but tomorrow marks the first of the award ceremonies I am invited to. I have three such events in eight days and I'm extremely nervous about all of them. Tomorrow is the 'Best in Care' awards ceremony organised by the Queen Elizabeth Hospital in Birmingham.
Tuesday, October 21, 2014
I'm still recovering from a busy weekend and haven't felt 100 per cent today. My ear ache has subsided but I'm suffering from fatigue. This is another wakeup call for me as I try and continue life as normal but often pay the price for it afterwards.
Monday, October 20, 2014
I feel drained today, clearly the Great Birmingham Run yesterday has zapped me of energy.
You'd think that I'd run the marathon myself from how I feel rather than me just photographing the event.
I've also been suffering with ear ache which I'm putting down to the strong gales which were blustering around Birmingham yesterday. I need a few days to recover now but at least we managed to capture more than 700 photos for Cure Leukaemia - we took more than 7,000 overall.
Sunday, October 19, 2014
I may not be able to run the Great Birmingham Run for charity but I'm able to help in other ways.
Today I was taking photographs of the runners on behalf of Cure Leukaemia. If you watched the race live on Channel 5 you would have spotted me quite a few times in the media circle by the finish line.
Saturday, October 18, 2014
My tongue is slowly getting back to normal after a couple of very painful days.
I've pinned the problem down to sucking boiled sweets. I had a couple during a car journey on Tuesday and my mouth has suffered since. Small, simple things can create so many problems.
Friday, October 17, 2014
I have to commend Channel 4 for dedicating an entire evening's television to the Stand Up 2 Cancer campaign. There were some truly heartbreaking stories over the evening.
It's a shame that a campaign to help eradicate cancer doesn't get as much advertising, publicity or support as we're used to with the televised appeals for Children in Need and Comic Relief.
I'd like to see this campaign grow in future years as at present, one in three people will develop cancer in their lifetime.
Thursday, October 16, 2014
This weekend, thousands of runners will pound the pavements of Birmingham during the Birmingham BUPA Great Birmingham Run. As well as marking one year since Burton Mail reporter Rob Smyth took on the challenge for Cure Leukaemia, it also marks one year since I received the phone call to say I needed to make my way to hospital to start the treatment in preparation for a bone marrow transplant.
Wednesday, October 15, 2014
I'm suffering with a very sore mouth today. I'm partly blaming the food I have eaten today coupled with the general weakness of the flesh in my mouth. As it now feels like I have eaten a bowl of grit and brushed my teeth with sandpaper, it's going to take a while to return to normal. This is just another of the complications you face post-transplant.
Tuesday, October 14, 2014
An appointment with a chest consultant has now been finalised for November.
Or it had until I discovered the date I have been given is one I cannot make. Thankfully I've managed to rearrange the slot but it means its going to be two weeks later than initially planned. It's a good job my breathing has improved recently.
Monday, October 13, 2014
The final menus, times and venues are starting to arrive for the various award ceremonies I have coming up before the end of the month. It's all starting to feel very real and quite scary.
I really appreciate the recognition I am receiving but these award ceremonies leave me feeling a bag of nerves.
Sunday, October 12, 2014
I was out supporting a couple of charity events today by photographing the bikers taking part. First on the agenda was a charity ride in aid of Birmingham Children's Hospital while the second event was in aid of Children in Need.
As a result of our photos, we've now also raised more than £50 for the blood cancer charities I support.
Saturday, October 11, 2014
Recent press reports on me have resulted in a resident from Matlock sending me a charity donation. It's so heart-warming to receive a hand-written letter of goodwill and a donation from a complete stranger who has been touched by my story. I'm adding the donation to the money I collected throughout September for Leukaemia CARE as part of Blood Cancer Awareness Month. Thank you.
Friday, October 10, 2014
My breathing problem returned today - just when I thought it had subsided and cleared.
I've also had to call the doctors today for an emergency repeat prescription as it suddenly dawned on me I was running very low on some specialist cream - thankfully everything has been sorted quickly and easily.
My official invitation for the Anthony Nolan awards ceremony to be held at the Houses of Parliament has now arrived. Plus I saw my name in the hospital newsletter yesterday for the QEHB 'best in care' awards. With three ceremonies to attend in an eight day period later this month, this is the calm before the storm
Wednesday, October 8, 2014
I was back at the hospital today for a routine appointment.
Everything is going well and the consultant is happy with my blood results.
As my breathing problem has improved immensely this week, it looks as though my appointment with the chest specialist will now be held in November.
Tuesday, October 7, 2014
Has the temperature dropped rapidly or am I starting to feel the cold more than I did before my life turned upside down? The good news is that my experience with leukaemia was publicised by the charity Leukaemia CARE during blood Cancer Awareness Month and now various people want to speak to me with regards to maybe publicising it further. We'll see what develops in the coming weeks.
Monday, October 6, 2014
The news has been full of stories on how the flu vaccine is being given to children.
This is going to be a nightmare for me as the nasal spray vaccine being used is classed as a 'live' vaccine. Anyone who has had a live vaccine recently is a serious threat to me and so I'm facing a problematic winter unless I cocoon myself indoors.
Sunday, October 5, 2014
As both the blood bank and Anthony Nolan issue an appeal for more donors to come forward from Burton, it shows that there is still a massive need for more education and awareness in the area. I am working towards the day when these organisations don't have to beg us any more as we adopt the donating attitude.
Saturday, October 4, 2014
I turned out in the awful weather conditions to show my support to the bikers attending Ride to the Wall today. Following our ride in March, we've got to know many new biker friends and today was a chance to support them. We've built up somewhat of a reputation over the months for photographing biking events and Ride to the Wall broke new records for us as we took more than 9,300 photos of the event.
Friday, October 3, 2014
When you've had cancer, you begin to celebrate mundane achievements.
Mine today is that I have used a hair drier for the first time in 18 months - until now I've never had enough hair to worry about but the 'chemo curls' are growing thick and fast.
This is the norm for you - it's an achievement for me.
Thursday, October 2, 2014
Today I've been mingling with former England football player Geoff Thomas as he
launched a major fund-raising initiative to benefit the charity Cure Leukaemia.
He spent the morning in London briefing the national press and television before heading to Birmingham for the main launch event in which I was featured.
It was a pleasure to meet Geoff and I am honoured to have been asked to take part in the launch event.
He spent the morning in London briefing the national press and television before heading to Birmingham for the main launch event in which I was featured.
It was a pleasure to meet Geoff and I am honoured to have been asked to take part in the launch event.
Wednesday, October 1, 2014
Blood Cancer Awareness Month is now over and it's been a phenomenal success.
I received a really touching email today from the charity Leukaemia CARE thanking me for my key role within the week which has reached five million people. That is five million extra people who now know the signs and symptoms of blood cancer.
Tuesday, September, 30, 2014
As the one-year anniversary of my stem cell transplant approaches, it's time to start planning for the next stage of my treatment. Having a transplant completely wipes away every vaccine you have had in your life, and so from the one year anniversary, I have to start being re-immunised. I hope the side-effects are minimal as I have a lot of injections to endure.
Monday, September 29, 2014
My course of super-strength antibiotics finished today for my breathing problem. I'd like to say they had made a huge difference but I'm not sure of the impact they have had. The next few days are going to be a key test as to their effectiveness.
Sunday, September 28, 2014
My breathing has been fine all day until it was time to climb the stairs for bed.
The inconsistency of this breathlessness points me in the direction of lung scars caused by the intensive chemo and radiotherapy endured last year. If it was an infection, this breathing problem would be more consistent all day every day.
Saturday, September 27, 2014
Whenever I receive an envelope marked the House of Commons I am always slightly excited as to its contents.
Today's letter was from Burton's MP Andrew Griffiths congratulating me on my Anthony Nolan award nomination. I extend my congratulations to Mr Griffiths as he too is nominated for an award for his help with my campaign.
Friday, September 26, 2014
My breathing problem has returned to its usual self after a few days showing some improvement. My antibiotics run out this weekend too which goes someway into showing this is maybe something other than a viral infection.
Thursday, September 25, 2014
As Blood Cancer Awareness Month is drawing to a close, I hope that people have paid attention to the information which has been made available through the media and social networks.
Thinking 'it will never happen to me' is not an option. I never thought it would happen to me either and my cancer was diagnosed late. Do you really want to follow in my footsteps?
Wednesday, September 24, 2014
In the past few days my breathing appears to have improved. I still pin one theory on that the weather plays a pivotal role and as the temperature has dropped a few degrees this week, my breathing has eased. As I slowly come to the end of my course of antibiotics, I hope this there is some truth in this theory.
Tuesday, September, 23, 2014
My latest award nomination is now public and I'd like to thank everyone for their continued support. It's clear October is going to be a very busy month as I have two award ceremonies and a charity meal to attend within the space of eight days - two in Birmingham and one in London. Hopefully November will be a little quieter.
Monday, September 22, 2014
Today was World Chronic Myeloid Leukaemia Awareness Day. Did you know or has the event passed you by without you knowing any more about leukaemia?
If it's the latter, my aim is to change this. I've just launched a new social media campaign which I hope will get people thinking more about blood cancer,
Sunday, September 21, 2014
I'm always keen to support those who have support me and today it was the loyal band of bikers we know as they went on their shoebox run to the National Memorial Arboretum.
We're getting to know more and more new faces and so I expect our next motorcycle fund-raiser to double its numbers.
Saturday, September 20, 2014
We started the day in London as I was really keen to watch and photograph the Great Gorilla Run where runners complete a fun run dressed head to toe in a gorilla suit. The day went to plan but my breathing was particularly troublesome first thing. Two minutes out of the hotel and I was seriously out of puff.
Friday, September 19, 2014
I received a surprise sackful of stamps today from the people of Ashbourne.
These stamps will help bolster my continuing efforts to raise money for the charity Leukaemia CARE. Health-wise, I'm still waiting for my appointment letter to see the lung specialist so my breathing remains pretty much the same - troublesome.
Thursday, September 18, 2014
I've been working on a fund-raising project which will hopefully grip people's attention and spread viral. Wouldn't it be great if I could start a fund-raising project which became as successful as the ice bucket challenge. Only time will tell but I'm hopeful.
Wednesday, September 17, 2014
It was back to the hospital today and the results from my recent lung tests show no improvement since I've been on specialist medication. The tests also show my breathing has deteriorated since my transplant in October.
This could be caused by one of three things - GVHD, where my new cells are attacking my body; a viral infection; or damage caused through intensive chemo and radiotherapy.
I'm being referred to a specialist chest doctor who will no doubt want to carry out an internal lung examination known as a bronchoscopy.
Tuesday, September 16, 2014
It's back to the hospital again tomorrow. I'm hoping they have some conclusive results from my latest CT scan and lung function test as my breathing is still not sorted. As blood cancer awareness month presses on, can I remind everyone I'm still selling charity ribbons for Leukaemia CARE.
Monday, September 15, 2014
I'm starting to dread going to bed as my nights are currently awful. Aside from being awake until 3am I have bouts of night sweats, nausea and restlessness. I'm blaming these problems on my bedtime cocktail of drugs.
Sunday, September 14, 2014
As Blood Cancer Awareness month continues, you may have heard a radio clip from me today if you listen to Heart FM. The station spoke to me about the signs and symptoms of leukaemia as many people don't know what to look for. I hope every bit of media coverage I receive helps in some way save more lives.
Saturday, September 13, 2014
I ventured out today and was recognised many times by people who follow my diary. One of those who stopped to chat was one of the first consultants I had when first diagnosed at the Queen's Hospital. I was amazed he remembered me as I haven't been to the Queen's for almost 18 months and he must see hundreds of patients. It's days like today which reveal just how many people follow my daily trials and tribulations.
Friday, September 12, 2014
The regional Pride of Britain finalists were revealed today. I'm not going through to the London finals but I am extremely proud of how far I have come having already beat off thousands of nominations. I'm thrilled for those going through to the London finals and I'm pleased that my video on the news will have helped to further raise awareness.
http://www.itv.com/news/central/search/?q=Pride+of+britain
Thursday, September 11, 2014
Did you catch me on the ITV Central News tonight? I missed it too as I'm featured on the East Midlands bulletin rather than the West Midlands version which we receive in Burton.
My fingers are crossed now for tomorrow when the grand finalists are revealed.
Link to video on ITV website:
My work and support for Blood Cancer Awareness Month is spreading and being recognised as the phone and email has been very busy today. I've also been sorting out my various donor recruitment plans as well as trying to sort confirmations for three very keen runners wishing to run the London Marathon in my name,
Tuesday, September 9, 2014
A few days ago, a national newspaper article discussed stem cell donation.
The reader comments linked to this story have left me appalled as they spread fear and misguided beliefs that becoming a donor is painful and requires an operation. Neither is true. Until we improve overall donor education, my campaign will continue to grow.
I hope you have been tuning into ITV Central News this week? I haven't appeared yet but you will have seen two of the other nominees in my category.
Monday, September 8, 2014
I want to say a big thank you to the anonymous donor who posted me an envelope of foreign stamps for my Leukaemia CARE collection. Your donation means a lot to me and the charity.
I haven't received a telephone call from the hospital which helps me to believe that my test results from Friday must be acceptable.
Don't forget to tune into the ITV Central News (6pm) every night this week as my Pride of Britain Award nomination video will be broadcast.
Sunday, September 7, 2014
I spent a few hours in Birmingham today - not at the hospital but supporting a cancer charity.
I volunteered to help take the photographs of a motorcycle ride for the Neuroblastoma Children's Cancer Alliance (NCCA) as they completed the final stage of a ride which has seen them travel between England, Scotland, Northern Ireland and Wales in a week-long tour.
Saturday, September 6 2014
I didn't receive a call from the hospital yesterday following my tests so I am hoping this means nothing unexpected was discovered. Today I started to retake some of the tablets I stopped as a precaution a week or so ago. I feel better mentally knowing that I am back on medication - I feel vulnerable without it.
Friday, September 5, 2014
It was back to the hospital today for more lung tests as I continue to experience breathing problems. Today was a lung function test (blowing into a computer) and a CT scan - my second CT scan in a month. And when I returned home, the postman had delivered yet more hospital appointment letters for the coming weeks.
Thursday, September 4, 2014
I have to return to the hospital first thing tomorrow for two more tests on my lungs.
A lung function test and a CT scan. It's hard not to get nervous about the results especially as my breathing appears to have taken a step backwards again.
I don't know if I will get the results tomorrow or at my next appointment - or if I'll just get a telephone call when I least expect it from the hospital.Wednesday, September 3, 2014
It was back to the hospital today for another check-up as my lungs are causing concern.
Everything appears to be okay but we still need the results of some tests to make sure it is what they hope it is.
News of me making the shortlist for the Pride of Britain Awards has already spread around the hospital - I feel like a celebrity and I haven't won anything yet.
Tuesday, September 2, 2014
It's back to the hospital again tomorrow as they are keen to keep an eye on my lungs.
I feel that my tablets have started to make a difference and so I'm hopeful that they are pleased with my progress. Next Wednesday we're back at the hospital again for a lung function test.
Monday, September 1, 2014
I've had one of my worst days for many months today. An excruciating headache coupled with nausea which simply left me unable to do anything. I'm not sure if it is down to my new tablets or if it's just coincidence. I don't want a day like this again for a while.
Sunday, August 31, 2014
Tomorrow marks the start of Blood Cancer Awareness Month and the message is quite simple - would you be able to spot the signs? Spotting leukaemia early is vital to increasing survival rates - please just make sure you're aware of the symptoms before it's too late.
Saturday, August 30, 2014
News of my Pride of Britain Award nomination is now public - I hope you're as excited as I am? I'd have loved to have revealed the news earlier but my latest stay in hospital hampered the filming somewhat. I've had loads of good luck messages today - thank you.
It's now a waiting game to see what happens next.
Friday, August 29, 2014
The tablets appear to be working to fix my breathing difficulties. There has been a noticeable difference in the past 24 hours which is a huge relief.
It's Blood Cancer Awareness Month in September and therefore I have been busy preparing some awareness and fund-raising initiatives.
Thursday, August 28, 2014
Today would have been my sister-in-law's birthday. She died in 2011 from breast and bone cancer aged 34 - the same age as I am now.
While ever there are cases such as this, the need for improved research and cutting-edge drugs continues and so does my determination to help raise the money to help fund this need.
Wednesday, August 27, 2014
It's time to celebrate. A few months ago, my bone marrow biopsy showed I had 0.004 per cent leukaemia in my body. My latest bone marrow test has come back as zero - zilch - nought.
For the first time in an unknown number of years, I am leukaemia free.
I now just need to sort this breathing problem. I have another CT scan and lung function tests on the horizon in the coming weeks.
Tuesday, August 26, 2014
My first full day back at home has had to be a day of rest as I'm still short of breath and my energy levels are low.
I've started my new regime of anti-fungal drugs and so far they are going okay - the list of side-effects is astonishing but they do say they are for 'life-threatening conditions'.
Monday, August 25, 2014
It may have been a wet and dismal bank holiday for most people, but it has been a joyful day for me as I was discharged from hospital. I'm returning again on Wednesday for another check-up and probably more tests but at least I'm home now. Armed with a bag full of new pills to go alongside my usual cocktail.
Sunday, August 24, 2014
I'm still quite breathless but my temperature and blood pressure have stabilised. After speaking to the doctors today, I am still confident that I will be home within the next day or two.
My treatment will then continue for months in tablet form rather than intravenously.
Saturday, August 23, 2014
I'm still undergoing treatment in hospital but things appear to be going ok. I had a slight temperature spike and some low blood pressure tests today but both have now stabilised.
It feels strange in that everybody knows me here - news of my campaigns and achievements must spread far and wide as all the staff knows snippets of news about me.
Friday, August 22, 2014
My treatment is in full swing now as I have a mixture of intravenous and tablet-form drugs as well as those painful stomach injections.
I'm being treated for both fungal and bacterial infections as I have a form of pneumonia.
Everyone is still hopeful that I will be home early next week if my results continue to improve.
Thursday, August 21, 2014
Finding a bed at the hospital took a little longer than usual but I'm now back in my usual ward.
For the next few days I will have a multitude of anti-fungal and antibiotic drips alongside a fairly continuous supply of tablets. I'm still hopeful of being home by Monday.
Wednesday, August 20, 2014
My bone marrow biopsy results are still not ready so I don't have any further news on that front.
The bad news however is that following my hospital appointment and an emergency CT scan today, I am ending the day with news that I will be re-admitted to hospital.
Fluid on both lungs looks like a fungal infection.
I'm upset at having to be re-admitted but at the same time I need to get better.
Tuesday, August 19, 2014
I'm slightly worried about the hospital tomorrow as I can never second guess the results.
However, at the same time I need to get my breathing problem checked before it escalates or causes further problems. I can't wait to be home again tomorrow with some good results under my belt.
Monday, August 18, 2014
My breathing is like a yo-yo. Today it has drastically improved to how it has been over the weekend. Whatever the underlying cause may be, it is something which comes and goes. Thankfully that rules out chest infections and other nasties but could point to conditions such as asthma.
Sunday, August 17, 2014
My breathing remains problematic - it's a good job I don't have to climb too many stairs on a daily basis. Apart from my breathing I feel well without too many other grumbles. I'll be happier once I've been checked over on Wednesday and once I have the results of my latest bone marrow biopsy.
Saturday, August 16, 2014
My breathing problem has resurrected itself this weekend. I am increasingly breathless and walking upstairs is the equivalent of climbing Everest. Thankfully I'm back at the hospital on Wednesday. No doubt this will be followed by numerous x-rays and tests.
Friday, August 15, 2014
Today it was confirmed that I can help Anthony Nolan monitor a new online
forum it has created for bone marrow transplant patients. This voluntary role
just requires me to log on to the forum when I can and help police the posts and
stimulate new discussions. I’m hopeful it will be good for me and the users of
the forum.
Thursday, August 14, 2014
I have to say a huge thanks to the kind readers who continue to send me their used stamps. Over the past couple of days, I have received a couple of bulk donations equating to a couple of kilos each - this is the same as sticking a bank note in a collection box, it really makes a difference.
To see earlier diary entries (dating back to April 2013) click on the 'older posts' link.
No comments:
Post a Comment