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08/02/2014

100 days and onwards

Tuesday, April 15, 2014 - One year since diagnosis with CML
I feel a million times better than I did this time last year.
Apart from having the bombshell dropped on me that I had leukaemia, I was also starting my first night in hospital. At the time this was a very scary experience as I had never been admitted to hospital or undergone any form of surgery or tests. Fast forward a year and I'm now a pro when it comes to hospitals and there aren't many tests or procedures which I haven't had done.
Now that I have reached my one year milestone, I would like to reiterate my thanks to the people of Burton and the readers of the Burton Mail who have supported me through a difficult journey. 
I started this daily diary of my treatment on Monday, June 24 2013, in the hope that I would raise awareness of blood cancer and hopefully encourage more people to sign up to the blood and bone marrow register. I have achieved both - and more besides - and my diary will continue as there is still a long way to go on my recovery and I'd like to take you on this journey with me.

Read my one year since diagnosis feature in the Burton Mail here: CLICK FOR STORY



Monday, April 14, 2014
This time last year, I was gearing myself up for a visit to the A&E department at the Queen's Hospital the following morning.
Fast forward a year, and I am praying for a better night's sleep, praying that I don't experience another bout of cramp in my toes and hoping to lose the fidgeting feeling I have had all day. 
But despite these grumbles, I would much rather be where I am today rather than where I was 365 days ago.





Sunday, April 13, 2014
It may be Sunday but my care and treatment doesn't stop.
Today we were back at the hospital in Birmingham for an MRI scan. The purpose is to determine if I am suffering from neuralgia parasitica - a nerve problem which could be behind the 'bee stings' I experience in my legs.
The bonus f visiting the hospital on a Sunday is that both the traffic and hospital were much quieter meaning the entire experience was quick and easy.

Saturday, April 12, 2014
I'm having a few problems with my overall body temperature. I feel cold when everyone else is putting on their shorts and then I have sudden hot flushes which leave me roasting.
I've read on a few leukaemia forums that one of the tablets I am taking can cause these hot spells. I'll have to monitor how it progresses over the next few weeks.


Friday, April 11, 2014
I've been busy trying to think of new ways to support the blood cancer charities which have been instrumental in my care. I have my ongoing stamp collection and we will repeat the BONE-shaker MARROW-thon ride again next year, but I'm after something in the meantime to help keep their funds afloat. Answers on a postcard please as to what I could think about for the summer.


Thursday, April 10, 2014
I managed to sleep much better last night. I'm not sure if it was a connection to me changing my tablet and food timings or if it was a result of me being so tired after days of no sleep that I could have slept anywhere.
Today i was touched by a YouTube video by 19-year-old Stephen Sutton who despite being diagnosed with terminal cancer, has a tremendous outlook on life. Search for the video yourself and make sure you use every one of the 86,400 seconds in each day to its full potential.
See Stephen's video below:



Wednesday, April 9, 2014
I'm still surprised by the widespread messages of support and goodwill I receive as a resort of my daily diary. Today a letter arrived just addressed to 'Katherine, Balfour Street' which clearly our post lady recognised as being for me. Inside was a collection of stamps for my campaign for Leukaemia CARE. I've been asked a couple of times recently if the stamp appeal is still running and the simple answer is yes - I plan to permanently keep the campaign open as it raises hundreds for the charity without too much effort or cost to anyone else.

Tuesday, April 8, 2014
My sleeping patterns continue to be disrupted but my body clock must be getting used to the situation as I'm not tired during the day. Just before Christmas I was lucky if I could manage four hours of activity a day followed by 20 hours of sleep. i'm now the opposite - awake for 20 hours a day and asleep (if I'm lucky) for four.
I'm now just seven days away from my one year anniversary since diagnosis.

Monday, April 7, 2014
I continue having trouble sleeping. We've swapped and changed covers and pillows but nothing appears to be working. It's now been a few weeks since I've managed a full night's sleep and so this gradual build-up of tiredness leaves you feeling rather rough at times.

Sunday, April 6, 2014
I ventured out into Derbyshire today for a change of scenery. Next weekend I am back at the hospital for an MRI scan so I have to take the opportunities when I can come rain or shine.
I've also been catching up on some of the work and campaigns the charities I follow are working towards - there are some important projects in the pipeline which I will continue to support.

Saturday, April 5, 2014
I can safely say that my shingles have now started to fully clear as the hardened scabs are falling out each time I comb my hair. I'm still struggling with my sleeping patterns and I don't appear to be any closer to finding out why or how to solve the problem.

Friday, April 4, 2014
Anyone who objects to supermarkets opening 24-hours a day hasn't had a bone marrow transplant.
I'm eager to try and carry on with normal life as much as possible but I am always wary of visiting crowded places as my risk of infection is far higher than normal.
Therefore, to allow me to enjoy visiting the supermarket, we have started to shop at rather unsociable hours. You'd be surprised how quiet the aisles are when shopping at 11pm - but at least I remain infection free.

Thursday, April 3. 2014
Today I've been busy sorting out used stamps for my LeukaemiaCARE appeal. It was during this sorting and bagging process that I came across a letter of support and appreciation from a reader - thanks to all those who continue to show me their support.
Letters are quite prominent in today's diary as I have received a letter of thanks from Anthony Nolan for my BONE-shaker MARROW-thon fund-raiser and I have finally discovered who sent me a letter whereby the contents went astray in the posting system.

Wednesday, April 2, 2014
I returned to the hospital today for my regular routine check-up.
My blood results continue to look promising and the blood transfusion I had last week has improved my haemoglobin and platelet levels.
A sample of blood has now been sent off to the laboratory so that the level of leukaemia remaining in my system can be monitored. If you remember, at the last count it was a microscopic amount. We need to make sure this level hasn't increased. Hopefully it is being wiped out by my new bone marrow and the tablets I am taking. 

Tuesday, April 1, 2014
My sleeping pattern is getting worse - so much so that I wonder if going to bed is worth the effort as I am awake 90 per cent of the night. I can't pinpoint exactly when or why this sleeping issue started - I just want it to end. Sleep deprivation is so depressing.
Tomorrow we're heading back to the hospital so this will have to be a topic of conversation. 

Monday, March 31, 2014
For the past couple of nights I have really struggled to sleep. I don't know why this has suddenly started, but I'm finding that I am still wide-awake at 3 or 4 am in the morning without having had a wink of sleep.
One theory is that I am on two new sets of tablets for my shingles and it could be these reacting with the tablets I continue to take on a daily basis.


Sunday, March 30,  2014
The weather this weekend has been glorious again. 
After I missed all of last summer by spending my days having chemotherapy in a hospital ward, you might think that I would be itching to see the sun.
Unfortunately, one of the hidden side effects of my treatment means that I now have to avoid the  sun. Too much sun can trigger a bad dose of GvHD and so I now have to be careful to cover-up, wear sunscreen and a hat.

Saturday, March 29, 2014
I've now had the appointment through for the MRI scan I need - this is going to take place on a Sunday in the coming weeks. Following my recent stay in hospital, I wouldn't be surprised if more tests and scans of various kinds don't follow in the next few weeks.
I'm back at the clinic on Wednesday this week for my routine blood tests which make sure there are no signs of leukaemia.

Letter - have you posted me a card this week in a yellow envelope? 

It was posted second class and has a Nottingham post mark.
If this is you, I did not receive the card. It appears that the envelope came unglued during the mail sorting process and therefore, all I have received is an empty envelope and an apology from Royal Mail. Thank you anyway for your thoughts.
Please do get in touch if it was you who sent the card.

Friday, March 28, 2014
I'm beginning to get to grips with the side-effects of my shingles. I still experience electric-shock style pains shooting through my scalp but I am learning to handle them better. 
It may be a coincidence, but these shocks are more prevalent when I experience a sudden shock or adrenaline rush. It can be something as simple as a car you're following braking suddenly - most people would get a sudden adrenaline rush as they went for the brakes, whereas I get a shock through my scalp.

Thursday, March 27, 2014
I needed a  good rest today after my late discharge from the hospital last night.
Since discharge, my tablet tally has increased again with two new batches of medication added to the list.
My day ended with the sad news that 27-year-old Ed Fox has died as a result of not finding a bone marrow donor. You have probably seen the 'Match for Ed' campaign which swept the West Midlands on television, radio and in the newspapers. Unfortunately, despite all of this publicity, a match wasn't found. 
News like this leaves me thinking what I can do next to help increase donor numbers further. Too many people are dying unnecessarily. 

Wednesday, March 26, 2014
I made it home today - just.
It was very close to breaking into Thursday morning before I finally made it home, but I got there in the end.
The doctors noticed that my haemoglobin levels were slightly low today (more than likely because of the medication I am taking) and therefore I was given the option of having two bags of blood today before I left, or return on Friday.
The first option sounded the best but I hadn't bargained on being allowed to take part in a charity cheque presentation we had pre-arranged at the hospital.
This cheque presentation threw the schedule out of sync and I ended up having the blood much later than planned resulting in a very late discharge.



Tuesday, March 25, 2014
I was moved to my usual haematology ward at around 1am this morning, but as I've spent so many hours in this ward, I know all of the nurses by name - this ward has become my second home over the past 12 months.
I'm still holding on to the hope that I can return home tomorrow, The doctor hinted that this would be the case when he visited today.
Tomorrow also marks the day that my BONE-shaker MARROW-thon fund-raiser hands over a dummy cheque for a photograph with the charities at the hospital. Unfortunately, it looks as though I am going to miss this opportunity as my expected discharge from the hospital won't happen until early evening.



Monday, March 24, 2014
I hoped that I would be making my way home today, but it looks as though I am going to be a resident at the Queen Elizabeth Hospital in Birmingham for a few more days.
The doctors are concerned about the location of my vesicles (shingles blisters) as they are apparently in a rare place. The nerve where my blisters are forming can cause sight or hearing problems and so I am going to be monitored for a few extra days. They also want to ensure that I don’t suffer with postherpetic neuralgia (nerve pain) once the shingles subside.
I’m now hoping that I should be home by Wednesday.

BONE-shaker MARROW-thon cheque presentation details:

Sunday, March 23, 2014
Today marked my first full day back in hospital and so I’ve been getting used to walking around with drip stands and learning to ignore the almost continuous warning beeps from the automated drip machines.
The doctors have now diagnosed my condition as shingles which is affecting my fifth cranial nerve (a bundle of nerves that controls areas of sensation and movement in the face).
To tackle this problem I am on intravenous antibiotics which should soon switch to tablet form so that I can continue to recover at home.
Although the antibiotics appear to be working, I am still in quite a lot of pain and need fairly frequent doses of pain relief medication.
I’m crossing my fingers that I can return home tomorrow armed with a box of antibiotics and a box of painkillers.



The view from my room at the Queen Elizabeth Hospital Birmingham.


Saturday, March 22, 2014
The day started with me having to sort an emergency appointment with the doctor as the electric shock pain running through my scalp was intensifying and I noticed the onset of small blisters beneath my hair.
The doctor agreed with my assumption that I had shingles and it was agreed that I would contact my team in Birmingham to discuss how best to proceed.
Birmingham wanted to see me for themselves and so we made our way over to the hospital - having been told beforehand that I may not return home today.
As you might guess, I am being kept in for a few days while I start a series of intravenous drugs to halt the spread and progression of the shingles. 
This marks my first stay in hospital for 2014 - I was hoping to avoid overnight ventures this year as my stint last year was more than enough for anyone.

Friday, March 21, 2014
I had to resort to a few pain killers today as this problem with my head hasn't improved and the sharp electric shock style sensation is becoming a little more frequent.
I feel fine in myself - probably the best I have been for months - it's just this problem upstairs which is frustrating me.

Thursday, March 20, 2014
My head problem continues and so I have had a difficult day dealing with intermittent pain and discomfort. I have a few ideas now myself as to what this could be - neither are particularly pleasant so I'll have to wait to see what transpires over the coming days.

Wednesday, March 19, 2014
I'm still suffering a little with a sore head - and I'm still no further forward in working out why.
Apart from this reoccurring soreness in my head (it's not really a headache) and some tiredness, I am feeling okay today. If this head problem continues, we will be forced to have it checked out by my medical team. 

Tuesday, March 18, 2014
I've been suffering with a sore head all day. I did bang it on a cupboard a few days ago but the impact wasn't huge and there are no visible marks, bumps or cuts.
The pain isn't one I would normally associate with banging my head, so although I could worry that this discomfort is caused by this knock, it could equally be linked to GvHD or even the drugs I am taking. Things aren't always black and white anymore. 

Monday, March 17, 2014
More and more people are diagnosed with leukaemia every day.
I know I should be resting and taking it easy after my treatment and transplant but I am acutely aware of the continuing need for funding for the charities. Therefore, I am starting to think about my next fund-raiser.
This time it's a sponsored team walk between Birmingham and Burton using only canal tow paths.

Sunday, March 16, 2014
I'm having to resort to drinking through a straw as the sides of my mouth are beginning to split. If I'm not careful, every sip I take, takes on a taste of blood, therefore, straws are the answer. In addition to this, my taste buds have changed as food and drinks which used to taste normal now taste very different.

Saturday, March 15, 2014
I am starting to have relatively normal days as the days of nausea and tiredness have passed. I'm coping with the tablets I am now taking, although the strict timings and rules mean that when I can eat has to be controlled. One of the tablets requires me not to eat anything for two hours before I take the pill and then nothing for one hour afterwards - giving me a three-hour no-food window both in the morning and at night. 

Friday, March 14, 2014
It's less than two weeks ago since I held the BONE-shaker MARROW-thon motorcycle ride and fun day to raise money for charity, and I am already thinking about next year.
The response from the bikers who took part has been overwhelmingly positive and so plans are being put in place to hold the event again next year.
There will be a few changes to the event, and the date is likely to change, but planning early ensures the ride is bigger and better than this year. The number of potential riders has already doubled as interest grows.



Thursday, March 13, 2014
As the dosage of some of my tablets was reduced yesterday, I have had a much better day.
I am now taking just one 25mg anti-rejection tablet each day compared to the 250mg twice-a-day dose I was on immediately following my transplant.
As my tablets are working on a sliding scale, I have now increased the chemotherapy-style tablet - this tablet is making sure the leukaemia doesn't return. As the anti-rejection drug dose is lowered, the dose of this tablet increases.

Wednesday, March 12, 2014
It was back to the hospital today. My blood results were good and these are the most important element when it comes to assessing my progress.
My consultant was interested to hear about the stinging in my legs and believes he knows what it is and what's behind it. Before any conclusions are made, I am going to have an MRI scan to double check there is nothing else causing the pain.

Tuesday, March 11, 2014
It's back to the hospital tomorrow and the first thing on my agenda will be the increasing discomfort in my legs. I've now resorted to prescription-strength painkillers to help ease the sensation at night as I have had a few nights where I've only managed two hours sleep and this is having an impact on my ability to manage a full day.

Monday, March 10, 2014
I had the worst night of all time last night with close to zero hours sleep.
Side-effects common with GvHD are increasing at pace and so I am pretty much continuously in discomfort with either stinging in my legs, itching under my arms, a sore tongue or split lips. 
Things have certainly changed over the past few days and I'm suffering as a result.

Sunday, March 9, 2014
Today was my opportunity to support some of the bikers who attended my ride last week.
We went along to Bassetts Pole and to the National Memorial Arboretum to see the bikers hand over shoeboxes full of donations for troops serving abroad. The weather was fine and the turnout was good and as a result, we have made some new friends in the biking world.



Saturday, March 8, 2014
I may be tired but I am finding it increasingly difficult to have an uninterrupted night. Whether it is aches and pains which keep me awake or just a sense of restlessness, I never achieve more than a few hours continuous sleep.
My tongue is still sore which makes eating what you want to eat a chore. The good news, is that this tongue problem can only be GvHD - when the donor cells start to attack my body. 

Friday, March 7, 2014
The stinging sensation in my legs is still an annoyance. I read today through an online support group that leg pain is sometimes a side-effect of one of the tablets I am taking, which always leaves me questioning whether I am witnessing side-effects of drugs or GvHD. I want it to be GvHD.

BONE-shaker MARROW-thon update:
The official figures for the BONE-shaker MARROW-thon charity ride and fun day are:
Total raised: £2,001-23p
Total raised including Gift Aid £2,178-73p
An equal (33.3%) split between the three charities equates to a share of (approximately) £667 (or including Gift Aid) £726 each.
My Virgin MoneyGiving page is still open and active if you would like to help increase this total:
Thursday, March 6, 2014
I was feeling charitable today and decided to repay some of the bikers who attended my ride on Sunday by supporting their ventures. Sunday will see bikers making their way to the National Memorial Arboretum for a shoebox appeal - where goods are packed into a shoebox and sent to troops overseas.
With a mountain of stock left-over from my fund-raiser on Sunday, I packed up two shoeboxes and took them over to one of the organisers in Halesowen (Birmingham) ready for the ride at the weekend.

Wednesday, March 5, 2014
I've had an awful day with my leg as symptoms of GvHD start to increase.
It's a feeling of pins and needles inside the muscle of the leg while the skin feels quite tight to touch. As the dosage of my anti-rejection drug continues to lower, I'm expecting the GvHD symptoms to continue to increase. Today has just been awful so it's scary to think of how bad this may get in the coming weeks.

Tuesday, March 4, 2014
The late nights and chaos of the past few weeks are starting to catch up with me. However, I shouldn't moan too much because two months ago I wouldn't have had the energy levels to do half of what I have achieved recently. More positive feedback keeps flooding in on my charity ride - so far it's been a 100 per cent satisfaction rating - which is extremely rare for a first attempt at such a venture.

Monday, March 3, 2014
The day after my fund-raiser has been just as busy as the weeks leading up to the event.
Feedback from the bikers who took part has been overwhelmingly positive - therefore, a return of the BONE-shaker MARROW-thon ride in 2015 is looking promising.
I'm suffering a little after putting in so much effort for the past weeks - I just need lots of rest to recuperate and re-charge my batteries.


Sunday, March 2, 2014
Today is the day - it was the first BONE-shaker MARROW-thon.
I say first, as we haven't ruled out running a similar event next year and maybe turning it into an annual event. The weather impacted on the overall turnout but we were happy with the numbers attending and have already thought of how we could change or alter the event should it return in 2015. This may include running it later in the year to hopefully guarantee warmer (and drier) weather as well as maybe just running the ride as a stand-alone event separate to the linked-in fun day.

Saturday, March 1, 2014
If I thought Friday was hard-work, today has really pushed my now exhausted energy-levels to the limit. Going to bed at 2am for two or  three days in a row would have a serious detriment to a fully-fit person, never mind somebody who is still recovering from extensive leukamia treatment.

Friday, February 28, 2014
I am really pushing my energy levels to the limits as I try to frantically prepare everything for my fund-raiser on Sunday. So much behind-the-scenes work goes into planning such events. Work which nobody ever sees and nobody realises you had to do, but is vital to the smooth running of the day.

Thursday, February 27, 2014
I'm having to juggle visiting the hospital to see my dad with working on my fund-raiser which is taking place this weekend. Thankfully, much of the nausea and tiredness as subsided now as I am having to work late into the evening to keep on top of things. It looks as though it may be a few weeks yet before my dad proves himself fit enough to be allowed home - therefore, hospital visiting will be a major factor for a while yet.

Wednesday, February 26, 2014
It was back to the hospital again today - my second appointment in three days.
The results show that my body has a leukaemia reading of 0.004 per cent.
This is a minuscule figure but clearly, the overall aim is to achieve a reading of 0 per cent.
The onset of 'graft versus leukaemia' coupled with the tablets I take should eradicate this 0.004 reading.

I also spotted more coverage of my fund-raiser while at the hospital - it's also in the QEHB Charity magazine.

Tuesday, February 25, 2014
Today has been a day of visiting the Queen's Hospital in Burton as my dad continues to recover from his operation, while tomorrow will be a day at the Queen Elizabeth Hospital in Birmingham for my routine appointment.
Tomorrow's check-up should be useful as hopefully the results of my x-ray and ultrasound scans should be ready.

Monday, February 24, 2014
It was back to the hospital today for my x-ray and ultrasound tests.
These were arranged to determine the cause of a pain I sometimes experience in the left side of my body.
I'm now a familiar face at the hospital as I am on the front page of the hospital's charity newspaper QEHB which is widely distributed throughout the complex.





BONE-shaker MARROW-thon, Sunday 2nd March
Regular readers of my diary will know about the charity motorcycle ride and family fun day I am holding on Sunday. Hundreds of bikers are expected to leave the Queen Elizabeth Hospital in Birmingham at around 10am. They will then make the 35-mile journey to Burton-on-Trent.
In Burton, the bikers will pass (but not stop) the Queen's Hospital. From here, they will head to the Pirelli Stadium for a family fun day (stalls, raffle, tombola etc). The bikers should arrive back to Burton between 11.15am and noon depending on their speed/ traffic/ departure time etc.
The Pirelli Stadium (Burton Albion FC) will open a snack bar for hot/ cold drinks, hot food and an alcoholic beverage bar.
I appreciate many of my diary followers are not from Burton-on-Trent. Therefore, hopefully this map of basic instructions should help if you decide to pop along and support my fund-raiser.
I'm raising money for Cure Leukaemia, Anthony Nolan and the Queen Elizabeth Hospital Birmingham Charity.
Click HERE for the map


Sunday, February 23, 2014
I'm gearing up for a busy week ahead. Firstly, we have two visits to Birmingham, secondly, my fund-raiser is now just seven days away and thirdly, all of this now has to slot around visiting times for my dad who is likely to remain in hospital all week.
You could guarantee that everything would happen at the same time in what's probably going to be my busiest week of the year. It's my x-ray and ultrasound tests tomorrow.



Saturday, February 22, 2014
I have been trying to wean myself off some of the anti-sickness medication I am taking.
After suffering an extreme bout of nausea this morning, I have decided to scrap that idea for now. I'd rather take the tablets and feel well rather than leave them out and feel rotten.
We're now regular visitors to the Queen's Hospital as my dad recovers from his operation.

Friday, February 21, 2014
My dad had his operation today for his fractured hip – instead of trying to repair the damaged ball joint, they have replaced it with an artificial piece. He is determined to be up and about as soon as he can, as he is adamant that he will make my charity fund-raiser next weekend.
As for me, I’ve had a couple of very good days with just the occasional nausea. There is so much still to do in preparation for next Sunday’s event that I cannot afford to feel ill anymore.

If anyone would like to support my charity event - but cannot make it on the day - donations can be made via my Virgin MoneyGiving page:



Thursday, February 20, 2014
How much bad news can one family handle? I’m not talking about my recovery from leukaemia, I’m talking about the other stresses and strains which I have to endure.
Today my dad tripped over an extension cable and fractured his hip, so it’s been another day of ambulances and hospitals as he is prepared for surgery in the morning.
Just when we think we have seen the back of hospital wards for a while, my dad takes up the baton with his 999 admission

Wednesday, February 19, 2014
After feeling under the weather yesterday, I am back firing on all cylinders today.
Today has very much been a full day on my fund-raiser with lots of miles covered collecting raffle prizes and an afternoon publicity photo-shoot with the Burton MP Andrew Griffiths - who hopes to take part in the fund-raising motorcycle ride himself.
My appointments have now come through for my x-ray and abdominal ultrasound tests - it looks as if a lot of next week will be spent in Birmingham.




Tuesday, February 18, 2014
I've felt a little under the weather today. It's hard to pinpoint exactly what's wrong, but I've felt tired, drained and have suffered from annoying heartburn and indigestion feelings.
Part of the problem may be down to over-exertion as I was up and about very early this morning working on my fund-raiser. I have to appreciate that I don't have the energy levels I once enjoyed.


Monday, February 17, 2014
The stinging in my legs which plagued me yesterday has been much better.
On the one hand, this is good news - but on the other, these hit-and-miss side effects which come and go make it very difficult to judge if it is GvHD or just an issue caused by one of my tablets.
I am still being contacted by people in the UK and abroad who have read about my leukaemia and my diary and want to get in touch. There are some truly good people in the World who care so much for others.


Sunday, February 16, 2014
The stinging sensation in my legs has really started to intensify. It's not a continuous feeling, it comes on in spells throughout the day - it's just that today, these spells have been more frequent with greater discomfort.
I'm fairly certain that it must be a sign of Graft versus Host Disease. Unfortunately, there are no physical markers which anyone can inspect to give a definitive diagnosis.


Saturday, February 15, 2014 - Entry Number 2
My remission news is proving very popular with lots of messages on Twitter, Facebook and via email. Just as the storm was settling from the Burton Mail front page story, the Daily Mail Online published the story and the publicity tornado continued.
With just two weeks and one day to go until my charity event, we have been trying to work on the preparations - but today even Stephen was finding avoiding the spotlight difficult.
When your face is on the front page of the newspaper, you cannot really go anywhere or do anything without complete strangers wanting to speak to you.

Daily Mail Online Story

Saturday, February 15, 2014 - Entry Number 1
I need to say a little 'sorry' to my loyal followers.
Many of you will have been checking my diary on a regular basis to discover news of my clinic visit on Wednesday. The news was exceptionally pleasing - I am in remission.
As I continue to be the face of leukaemia and stem cell donor campaigns across much of Staffordshire and Derbyshire, we agreed with the newspaper not to reveal the news until today.
We've spent the past couple of days sorting photographs and quotes for the newspaper story which appears in today's Burton Mail on the front page - as well as on most of the town's billboards.





Friday, February 14, 2014
I was out and about early this morning as I try to drum up support for my charity fund-raiser on March 2. This continuing bad weather is a worry, but my optimistic theory is that this storm will have cleared by then and we will be enjoying beautiful sunshine with cloud-free days.




Thursday, February 13, 2014
With just a couple of weeks to go until my fund-raising motorcycle ride, I am having to dedicate as much time as I can manage to the project.
I still suffer with the occasional bouts of fatigue and nausea, but I try my best to keep as active as possible.
My aim was to raise £1,000 for each of the three charities I am supporting.
I think I should easily surpass this target as so far through online donations and raffle ticket sales, I have already raised around £1,000.


Wednesday, February 12, 2014
This freak weather is starting to cause a headache when it comes to heading over to Birmingham for routine appointments. Some of the roads were resembling small rivers and the high winds threw up their own obstacles with flying signs and branches.
I'm waiting for the forecasters to warn you not to venture out unless vitally necessary - as my hospital appointments are always vital, we will have to venture out regardless.

Tuesday, February 11, 2014
Tomorrow is D-Day as I discover the success so far of my stem cell transplant.
The result is impossible to predict which makes my clinic appointment tomorrow more worrying.
On the positive side, recent blood tests revealed very promising results. 
But on the negative side, I haven't had many confirmed signs of Graft Versus host Disease. 
I have had side-effects which could be GVhD, but the condition hasn't been officially diagnosed by a doctor which always leaves me in doubt.  

Monday, February 10, 2014
I've had some good news today from one of the many charities I am keen to support.
I found out today that the latest batch of stamps sent to Leukaemia CARE is expected to raise in the region of £350 for the charity.
All of those doubters who questioned how much they thought I expected to raise by saving used stamps can now hopefully see that every little bit does help. I know that my loyal supporters continue to drop stamps off at the Burton Mail so another delivery will be made to Leukaemia CARE in the coming weeks. Thank you, and please keep saving.




Sunday, February 9, 2014
Despite the ongoing awful weather, I enjoyed a change of scenery and drive through Derbyshire.
My somewhat rapid hair regrowth following my chemotherapy means that I no longer have to leave the house dressed like an Eskimo. 

Saturday, February 8, 2014
It's still so far so good following my 100 day marker. 
I'm starting to get slightly nervous about hearing the results of my latest bone marrow biopsy on Wednesday. Yet at the same time, I am eager to know the success of the transplant I had in October.

Friday, February 7, 2014
You shouldn't be too surprised to learn that day 101 was no different to day 100, 99 or 98.
Over the next few weeks, my tablet ritual should become slightly easier as many of the tablets you have to take following transplant stop from day 100 onwards.
My anti-rejection drug dosage will also continue to lower. As for pills such as penicillin, I will be on a daily dose of this for life.
Today I have been busy making preparations for my fund-raiser on Sunday, March 2nd. Please help spread the word if you can so that we attract a huge crowd.
More people = more life-saving money for Anthony Nolan, Cure Leukaemia and the Queen Elizabeth Hospital Birmingham Charity.

02/01/2014

New Year - new outlook

To view more of my diary (dating back to April 2013) click on the 'older post' link

Thursday, February 6, 2014 (100 days)
I marked my 100th day today since I received the donor cells from a mystery lady in Germany.
There is still a long road ahead but the 100 day marker is a major hurdle to clear.
Hitting 100 days gives me a renewed sense of determination to make sure that everybody who needs life-saving donor cells receives them. I want them to have a second chance like I have had. This can only happen if we have a thriving and growing donor programme. 
Therefore, as I grow stronger, I am determined to continue to raise awareness of the importance of signing the donor register. 

 


Wednesday, February 5, 2014
I've been suffering a little today with post-transplant side-effects.
I've been very tired following a rather busy Tuesday and my tongue feels more sensitive than usual. Foods which most people would consider bland and mild are the equivalent to a hot Vindaloo for me at the moment.
It was nice today to receive messages of support through social media from my followers who had remembered it was my 100 day marker approaching without being reminded.

Tuesday, February 4, 2014
My 100 day marker is drawing nearer - Thursday is the day when I reach the milestone.
Nothing spectacular happens on this day, it is purely a benchmark used by doctors when assessing Graft versus Host Disease (GVhD) side effects - side effects before day 100 are classed as acute whereas side effects post day 100 are classed as chronic.
For me, I will still be battling the same nausea on day 100 as I am today on day 98.



Monday, February 3, 2014
My energy levels have been very good today but I'm back to battling nausea and trying to accurately time my meals and tablets.
We have to make the most of the days when I am feeling energised and so I've been trying to catch up on some of the correspondence i receive through email and social media. 
My ever-increasing follower list on Twitter proves that people must be interested in my condition and charity efforts.
Follow me on Twitter @Leukaemia_and_K



Sunday, February 2, 2014
Right on cue, my Sunday ended with the return of nausea.
For 90 per cent of the day, I have felt great which has enabled me to continue work on my fund-raiser which is now less than a month away.
This nausea will now be a common occurrence until we can find a way to manage the tablets which are clearly responsible for this feeling.  


Saturday, February 1, 2014
I made the most of my 'tablet holiday' and absence of nausea by taking a trip to the shops.
Again, this just involves me waiting in the car as my immune system is still very low, but at least it is a change of scenery.
Tomorrow I'm back on the chemo therapy sty,e tablets and so my nausea will probably return. The other downside to these tablets is that they lower your white blood count meaning that my immunity is also kept suppressed. 

Friday, January 31, 2014
My 'drug holiday' continues as we try to establish what is behind my nausea.
I've felt really good today which must now prove without doubt that the majority of my nausea was caused between the chemotherapy drug mixing with the anti-rejection drug.
I've got to make the most of tomorrow as my 'drug holiday' comes to an end on Sunday.


Thursday, January 30, 2014
At my hospital appointment yesterday, we discussed my ongoing nausea. The theory that it is down to the tablets mixing together is being investigated. I am now on a four-day break from one of my tablets to see if the nausea improves. Day one, and the nausea has cleared proving it must be a tablet problem rather than anything else.

Wednesday, January 29, 2014
It was back to the hospital again today for a routine appointment.
We don't have the results from yesterday's bone marrow biopsy yet, but additional blood samples taken about three weeks ago look promising.
The highlight of today's clinic was bumping into one of the ladies we got to know through the Cure Leukaemia charity dinner last year. She had her transplant nearly five years ago and now just visits the clinic every six or 12 months. Meeting a 'success story' patient really gives your confidence a boost.



Tuesday, January 28, 2014
Next week, I will mark 100 days since my bone marrow transplant.
The only way to to see if my transplant is working as hoped, is to have a bone marrow aspiration and so that was on the cards for today.
Today's test would be my eighth bone marrow biopsy since April and so although I am now all too familiar with the procedure, nothing prepares you for the discomfort.
Thankfully, the procedure went smoothly and now we just cross our fingers for the results.

Monday, January 27, 2014
I spent the latter part of today battling nausea. I thought I had cracked the tablet and food timings to prevent such miserable occurrences but clearly not. Today's episode might have something to do with my anxiety leading up to my bone marrow biopsy in the morning.
Not only have I the worry of the biopsy, I have to be there for 9am which means an extremely early start, traffic jams and rush hour hell through Birmingham city centre.


Sunday, January 26, 2014
As the week draws to a close, I'm starting to get anxious about my appointments this coming week at the hospital.
On Tuesday I have my bone marrow aspiration. Apart from being one of the most uncomfortable and painful experiences you can imagine, the results from this test will give the first true impression of whether my transplant in October was a success.
If you remember, I had a bone marrow test done before the transplant. The results from my test on Tuesday will be compared to those results and what the doctors are looking for, are German donor cells rather than my own cells.

Saturday, January 25, 2014
Last Saturday I felt on top of the world but then this feeling quickly diminished throughout the week. Today, again, I have felt really well and so have spent many hours trying to plan my fund-raiser on March 2. I just hope that this feeling today doesn't diminish as fast as it did last week.
Click HERE for more details on my fund-raiser

Friday, January 24, 2014
It has taken a few weeks, but I think I have found a way to beat the worst of the nausea.
Intricate timings between my various tablets and food appear to be the answer. Altering the times I eat or take the tablets is proving a success so far.
It's not perfect as taking some of the tablets causes nausea anyway, but things are improving.

Thursday, January 23, 2014
I've had a slightly better day today but it's still been one where I am battling bouts of nausea.
I've experimented with lots of different tablet timings but I still cannot find one whereby I don't feel nauseous after taking the chemotherapy drug Nilotinib.
I also thought my tongue was on the mend until I ate something slightly spicy - I had to dangle my tongue in a  glass of water to ease the pain. I've learned my lesson - my tongue is still sensitive.



Wednesday, January 22, 2014
If we rewind to the weekend, I felt on top of the world on Saturday.
Whereas today I feel awful. I woke up with a headache and nausea, and even after the anti-sickness tablets and painkillers started to work, I still didn't feel 100 per cent.
Today has probably been my worst day for a while.


Tuesday, January 21, 2014
For a couple of weeks I have been getting a strange sensation in my legs. I describe it at home as a 'bee sting' as my legs tingle from the inside as if I am being stung.
This sensation tended to come and go for an hour each day, making me assume that it must be tablet related. That was until today when the feeling has been almost constant throughout the day - maybe it's a sign of GvHD?


Monday, January 20, 2014
I'm still struggling to have a proper night's sleep and so I have resorted to digging out new pillows in the hope that these make a difference.
A new problem today has been my balance when standing. It's not a major worry, but it's a new issue which has started to develop today. I'm hoping it's just a 24-hour glitch.
The good news today is that I am sending a cheque to Leukaemia & Lymphoma Research totalling £63 for the sale of their 'Beat Blood Cancer' pin badges.

Sunday, January 19, 2014
After feeling great yesterday, my Sunday hasn't been quite so good.
It's hard to pinpoint exactly why or how I feel different today, it's just that I don't feel 100 per cent. Over the past few days I have had real difficulty sleeping. I've been unable to get comfortable and find myself alert and awake for much of the night - maybe it's this broken sleep which is making me restless in the day?
This weekend is a prime example of how my health changes day to day without rhyme or reason. Yesterday I could have conquered the world, while today I feel deflated.


Saturday, January 18, 2014
For a change, I felt rather energised today and so threw myself into organising my fund-raiser.
The riding aspect of the event means that it requires very detailed liaisons with police, councils and the Highways Authority. Thankfully, they are all supportive of the event and nobody is objecting to a snake of bikers making their way from Birmingham to Burton.



Friday, January 17, 2014
Everybody keeps telling me that the weather so far this month is very mild.
I ventured out today for around 5 minutes and almost froze to the spot - for me, this weather is perishing. It probably doesn't help that I have lost my blanket of hair, but I am pleased to report that it is growing back rapidly.

Thursday, January 16, 2014
Yesterday at the hospital, we stocked up on anti-sickness medication and It's so far so good.
Last week, I ran out of my favourite anti-sickness remedy - a tablet called Ondansetron - and I struggled for a few days on two alternative pills which didn't work too well.
Now because I am fully stocked on Ondansetron while still taking one of the other anti-sickness remedies, I am managing to control my nausea better. The downside, is that I have noticed that since I have been back on Ondansetron, I am tired again.
It's a very difficult balancing act - I either have more energy and nausea or no energy and control the nausea.


Wednesday, January 15, 2014
It was back to the hospital today. Thankfully, my blood counts are pleasing my consultant and the many annoying problems I am currently experiencing (nausea, sore tongue, pains in my leg, tiredness and low energy) are all very common side-effects of having a transplant after extensive chemo and radiotherapy.
The clinic was exceptionally busy with more than 100 post-transplant patients having appointments. Listening to some other patient's stories, my side-effects are relatively mild - hopefully mine stay like this and don't escalate any further.


Tuesday, January 14, 2014
As my nausea continues, I now have another problem.
My tongue is starting to shed skin and crack which makes eating extremely painful.
Despite the discomfort, this is a side-effect I cherish.
A blistered tongue is a common symptom of Graft Versus Host Disease (GvHD) which happens when new donor cells begin fighting with your body.
Getting tell-tale signs of GvHD is a welcome early indication that the transplant has been a success as this can lead to a scenario known as Graft Versus Leukaemia whereby the new donor cells attack any remaining leukaemia cells in the body.


Monday, January 13, 2014
Nausea is still causing me problems. I'm convinced it's caused by the anti-GVhD medicine I am taking mixing with the chemotherapy style tablet I am also taking - not forgetting the preventative antibiotics and magnesium supplements.
Timing the tablets so that I leave adequate time between each dose is also tricky as some require an empty stomach while others need to be taken with food.
The mornings are currently my most stomach-wrenching time as the tablets have had a few hours to ferment in my stomach overnight. Getting up without needing to rush to the bathroom is proving more challenging each day.

The stamps we posted on Thursday have now arrived at Leukaemia CARE, and it was nice to receive a thank you message from the charity who are thrilled with the donation.





Sunday, January 12, 2014
I'm pleased to say that my chronic tiredness faze has lifted as quickly as it arrived.
Gone are the days when I could only keep awake for three or four hours a day.
Unfortunately, this tiredness spell has been replaced with an almost continuous feeling of nausea. 

Going to bed is now a problem as I know that I am likely to be kept awake with the worry and feeling of sickness. I'm on two types of anti-sickness tablet but neither appears to be working. I'm beginning to think that the tiredness spell was far more pleasant than this nausea.


Saturday, January 11, 2014
I have suffered with nausea all day today. I have been able to eat but have had a constant feeling of sickness. This makes taking tablets - which themselves cause nausea - a very difficult process. Today has probably been one of my worst days so far since the transplant.
Friday, January 10, 2014
Despite being exceptionally tired, I struggled today to get much rest. I couldn't sleep when I wanted to and felt very irritable. I managed to leave the house for a short drive-out to give me a change of scenery other than the hospital, but I'm still restricted to where I can go and who I can see because of my decreased immunity. 

Thursday, January 9, 2014
I may be low on energy, but there are certain things which give me a sudden upsurge of enthusiasm and today it was used postage stamps.
The response to my appeal in the newspaper has been amazing and although the house was covered in thousands upon thousands of tiny pieces of paper, it was worthwhile to know that the 25kg haul was going to benefit the charity Leukaemia CARE.
I’d like to hope that even after the packaging and excess paper has been discounted from this total, that Leukaemia CARE has somewhere between 18 and 20kg of stamps to weigh in to sell. Which by my rough calculations and estimations should hopefully raise between £150 and £200 for the charity.
The charity’s work continues and without any form of Government funding whatsoever, my stamp appeal continues – keep collecting please.
For information on how you can collect for Leukaemia CARE, click the link below:




Wednesday, January 8, 2014
It was back to the hospital today. The main news is that my consultant is happy with my results and my tablet doses are being adjusted to suit.
I am gradually starting to take less of the drug which prevents the side-effect GVHD while I am taking a slightly higher dose of the chemo-style drug which I am taking to prevent the leukaemia returning.
I also have a date for my next bone marrow biopsy which is later this month.


Tuesday, January 7, 2014
It's back to the hospital again tomorrow for the weekly check-up and blood tests. The 9.10am appointment will make life busy in the morning - have you tried driving from one side of Birmingham to the other in rush-hour traffic recently?
Meanwhile, today, has been a day filled with insurance headaches for the BONE-shaker MARROW-thon, you wouldn't believe the amount of planning and expense needed to host an event of this scale.


Monday, January 6, 2014
I'm struggling to keep warm and it's apparently quite mild for January.
I don't know whether it's because I have a distinct lack of hair or just another of the many side-effects I am learning to overcome.
With an open fire roaring and the heating piping, I am still freezing while my husband is walking around roasting as if it is a heatwave.


Sunday, January 5, 2014
My energy levels are still very low, but in the hours I have been awake, I have been busy working on my fund-raiser planned for March 2 - the BONE-shaker MARROW-thon.
There is still a long way to go in terms of planning and preparation but support for the charity event has been overwhelming with support coming from many parts of the UK.
Unfortunately, my energy levels don't allow me to do as planning and preparation as I would like.







Saturday, January 4, 2014
My hair appears to be growing back at a rapid pace. It's hard to tell what colour or style it will end up, but at the moment, I am just happy that the regrowth has started. I've heard it can take many months before it reaches a reasonable length - you only have to look at Jessie J to see how long it's likely to take.

Friday, January 3, 2014
Judging by the freakish weather we have experienced over the past couple of days, I am beginning to think January may bring with it some problems.
Come sun, rain, snow or wind - my hospital appointments will continue.
Me not making one if these vital appointments because of the weather is not an option, the problem lies in that it isn't just a drive around the corner, it's a 70 mile round trip each time.


Thursday, January 2, 2014
As many people returned to work today for the first time since Christmas, my routine remained relatively unchanged. Vast quantities of sleep inter-mixed with dozens of tablets.
The main change now that many of the charity staff have returned to their offices was a return to  the projects I started before Christmas - mainly Anthony Nolan's 'Roadmap for Recovery' and my own BONE-shaker MARROW-thon charity ride plans.

Roadmap for Recovery web lin
BONE-shaker MARROW-thon web link

Wednesday, January 1, 2014
The new year hasn't delivered me a new lease of energy as I am still extremely tired.
On the positive side, I am seeing the first signs of new hair growth appearing and so it won't be long before I have hair again. Being bald certainly makes you appreciate the insulation factor of hair as my head really feels the cold - I wear hats all the time, even inside.
Thankfully Santa delivered me quite a range of styles and designs to suit all weathers and occasions.