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.
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.