Treatment and transplant - October 2013 onwards

Tuesday, December 31, 2013 – New Year’s Eve

As today marks the end of another year, it fills me with optimism for the year to come.

This past year hasn’t been particularly joyous – with the bombshell of discovering I had leukaemia being dropped in April.

I’d probably been suffering with my CML for months or even years, but it was April when the news was confirmed and the whirlwind of tests, treatments, tablets and hospital stays commenced.

I have spent exactly 100 days in hospital this year which when coupled with my dozens of outpatient appointments, equates to a third of 2013 in hospital.

As today marks day 63 of my donor cells, everyone is hopeful that life can return to some form of normality in 2014.

Many people make New Year’s resolutions for the year ahead. Mine exactly isn’t a resolution as these ideas have been in the pipeline for a few months, but 2014 will certainly be the year when we do all we can to help the charities which have supported me in one way or another through a troublesome 2013.

Monday, December 30, 2013
It was back to the hospital today.
Despite the early start, the day went well as the roads and hospital were much quieter than normal.
My results were okay, and therefore, I am going to restart taking one of the chemotherapy-style drugs I used to take before my transplant - but in a lower dose.
There is always a risk - even after a transplant - that the leukaemia can return, and therefore taking this low dose medication helps to trim the chances of any potential relapse even further.
Dates are now being pencilled in for my next bone marrow aspiration and my blood is being analysed for certain genes for an early indication of how successful my transplant has been.

Sunday, December 29, 2013
It's back to the hospital tomorrow for a routine check-up.
Leaving my fatigue to one side, I generally feel okay and my cough has almost cleared now. The skin wound on my back is also close to fully healing and I don't think it will be long before we can pack away the need for creams and dressings.
Having said all this, the key thing is my blood cell count so you can never predict what will happen until I'm at the hospital. If my blood is good, I'm good.

Saturday, December 28, 2013
My tiredness spell continues. I am now spending far more hours each day asleep than awake.
And in the hours I am awake, Stephen is frantically trying to get me to eat, drink and take rounds of medication as he knows that I could nod off again at any time - for hours.
It's only in the past couple of days that this chronic tiredness has hit me so I am hoping it goes away as quick as it arrived.

Friday, December 27, 2013
My day today consisted of sleep, sleep and a bit more sleep.
The festivities of the past couple of days have caught up with me and I have not had the energy to do anything. I've spent vast amounts of today asleep and so this causes problems when trying to stick to a medication timetable or when trying to conjure up the enthusiasm to eat.
Hopefully I will feel a little more refreshed tomorrow as today has been a bit of a write-off.

Thursday, December 26, 2013 - Boxing Day
As expected, the Christmas festivities have drained my energy.
By 6pm today, I was ready for bed and desperately longed for a rest.
It's this lack of energy which is the greatest drawback so far to my transplant as I take tablets to solve the nausea and creams to clear any rashes but there isn't an easy cure for low energy levels.

Wednesday, December 25, 2013 - Christmas Day
The Queen's Speech this year was very much about reflection.
Her Royal Highness spoke about the ritual of keeping a diary each day as this allows you to look back and 'reflect' while at the same time, the act of writing can be a healing process.
I've never kept a diary before to the scale I am currently, and I have to agree that this reflection period is rather healing. 
However tired I am now, it is healing to know that the weeks I spent in hospital undergoing chemotherapy are now behind me. I can look back at those bad days and heal the worries and tiredness I may be experiencing today.

Tuesday, December 24, 2013 - Christmas Eve
My low energy levels mean that we are still running short on time and to the last minute.
Apart from wrapping the last few presents, I have been busy catching up with the Anthony Nolan 'Roadmap to Recovery' campaign. It's not every day that you receive personal letters from your MP, the chief executive of the NHS and the Department of Health.
I had a surprise call from my consultant in the afternoon. He was telephoning to check everything was okay before Christmas. I can't think of many consultants or hospitals that would go to that effort on Christmas Eve - it's just another example of how great a team I am under at Birmingham.

Monday, December 23, 2013
As the Christmas cards continue to arrive, I am deeply touched by the messages of support I am receiving. My leukaemia journey has touched many people who are intrigued with me, my condition and what the treatment involves. May I wish all my followers a very Happy Christmas.
Today marks day 55 of my post-transplant journey, so I am just over half way to the important 100 day marker.

Sunday, December 22, 2013
Christmas cannot come soon enough for me. It's not that I am excited about presents, it's because every day which we have to wait poses more risk of me falling ill. Today I had a temperature reading of 37.8 which causes the heart to flutter. If it hits 38 then I will be spending Christmas on the ward.
It's like living your life on a knife edge, every day brings risks and things can change in a matter of hours.

Saturday, December 21, 2013
After a busy morning delivering a Christmas wreath to my sister-in-law's gravestone, I was left shattered. It's not as though I had to do much as Stephen does the driving and we were able to park near the memorial. It must just be the fresh air and the change of scenery which zaps my energy. I'm going to have another day like this in the coming days as we have a wreath for my mum's grave too.
If you don't have these jobs to do at Christmas, then you should think yourself very lucky that cancer hasn't struck your family the same as it has ours.

Friday, December 20, 2013

I was discharged from the dermatology clinic today which is a big milestone to achieve.

Avid readers of my diary will remember that in June/ July, I suffered with a rash on my legs and feet, and a bone marrow aspiration I had taken went funny following an infection.

It has taken until now for these problems to clear up to a standard where the dermatology clinic feel they can discharge me from their care.

As a leukaemia patient is a patient for life, I will never get this discharge feeling from the haematology clinic, I'll be returning there on a regular basis forever.

Thursday, December 19, 2013
Every Thursday we wait by the telephone ready for the hospital to call.
One of the tests they carry out on a Wednesday at my appointment is to check the Ciclosporin levels in my blood. Ciclosporin is as an anti-rejection drug and whether you have a bone marrow transplant or a kidney transplant, the chances are you will take Ciclosporin.
The results take 24 hours and process and so we wait to hear if my dosage needs increasing or decreasing. Unfortunately for me, my dose needs increasing. I hate this drug as it has a lingering smell which is enough to make you gag and it brings with it nauseous feelings. 

Wednesday, December 18, 2013
It was back to the hospital today for routine blood tests and a check-up.
The results showed that some of my blood elements (platelets, white cells etc) have fallen since last week. Apparently, this is quite common when your body is fighting an infection which I clearly am with this cough.
Overall, my progress is good and I am due back for more blood tests in between Christmas and New Year. We are of course back to the hospital on Friday this week to see the skin specialist about the wound on my back.
As usual, I had a wish list of presents I wanted to wrap once I got home. But yet again, I arrived home shattered and so didn't achieve anything other than sleeping after my appointment.

Tuesday, December 17, 2013
The district nurse came today to check and re-dress the wound on my back - everything is doing well.
I had good intentions of spending most of the afternoon wrapping Christmas presents but found myself asleep for hours. My energy level today has been very low and I have struggled to keep warm. My cough which has been steadily improving over the past couple of days is back with a vengeance too.
It's a good job I caught up on my rest today, as tomorrow we have to be out early for my hospital appointment.

Monday, December 16, 2013

The busy weekend always catches up with me on Monday and leaves me needing extra rest. I woke up this morning with a slight rash on my feet - although this quickly disappears, I would like to think it is a sign of Graft versus Host Disease.
I'd also urge everyone to keep an eye out for the new Anthony Nolan Christmas advert featuring 'Chloe'. Donating £3 would help give somebody like me, a life-saving transplant.

Sunday, December 15, 2013
My energy levels are starting to improve a little - I am now managing without needing an afternoon rest. I am however still suffering with bouts of nausea which leave you feeling anxious as you never know if sickness will follow. I had a couple of situations today when I was left feeling extremely ill.
I'm thankful that I had my transplant when I did as anybody going into hospital now will be in for Christmas and the New Year. It looks so far as if my last session at the hospital before Christmas will be Monday, December 23.

Saturday, December 14, 2013
Today I managed to venture out of the house to go shopping for the first time.
Don't get too excited as 'shopping' means me waiting in the car while I send Stephen into various shops and supermarkets. As my immunity is still so low, I cannot mix with large crowds and so my shopping trips consist of me sat listening to the radio. I may not be able to fully take part in the activities, but just getting out the house and seeing a change of scenery is entertaining.

Friday, December 13, 2013
Once I was awake, I felt energised today and so hit the Christmas cards. I have been wanting to write them for days but have never felt that I had the energy until today.
My cough appears to be slowly clearing on these new tablets and so I am sleeping a little better at night which helps with my daytime energy levels.
More hospital appointment letters arrived in the post today, we are in Birmingham two days next week as I am booked in to see the skin specialists too.

Thursday, December 12, 2013
As usual, my visit to the hospital yesterday, has left me absolutely shattered today. My energy levels are very low and despite having the best intentions, I am just not physically able to do everything I plan to do.
I am finding that social media is proving a useful tool as I am speaking to people on Twitter who have been through the same process as me. What I am experiencing now is not uncommon - what's worrying is that I may still have some other nasty side-effects to come.

Wednesday, December 11, 2013
Today it was back to the hospital clinic for a routine check-up. This cough I am still battling with and the subsequent pain it is causing, is still a concern for the doctors and so I was issued with new antibiotics and sent for a chest x-ray. The x-ray results were clear.
My left eye is also bloodshot and so I was given an eye swab to check for underlying infection - no it wasn't pleasant, imagine sticking a cotton bud in your eye - twice.
Today was also a case of being in the right place at the right time as we returned to the clinic from the x-ray just as the entire Warwickshire Cricket Club team were being given a guided tour of the facilities.
I was asked by my consultant if I would mind speaking to the players about my leukaemia and bone marrow transplant and so this was filmed by the charity Cure Leukaemia.
Watch the video here:http://youtu.be/B1kJn9vTknQ

Tuesday, December 10, 2013
The district nurse came today to remove the stitches which held together the flesh where I once had a Hickman Line. Removing the stitches was a walk in the park compared to some of the procedures I have endured and thankfully, the resulting scar is only around half an inch long.
The nurse also checked the wound on my back which has been an ongoing worry and annoyance since the summer. Thankfully, now that my cell count and platelet levels are rising, this wound is now healing quite well. I'm hopeful that within a couple of weeks that we can suffice with just a simple dressing rather than the ritual of creams and silver-infused dressings.
It's back to the hospital tomorrow. This process gives me the same feeling as waiting for exam results - if I fail, I will end up in hospital again for days or even weeks.
Every week I need to pass this blood test exam.

Monday, December 9, 2013
The antibiotics and pain-killers must be working as I am feeling the best I have felt for days.
However, although I have lost some of the pain and my cough is subsiding, my nausea levels appear to be increasing. Some of the anti-rejection drugs leave me gagging - you wouldn't believe how bad they smell. Sometimes, I think the feeling of sickness is worse than the actual event, and today, I have had those feelings on and off frequently.
I conquer one problem and find another.

Sunday, December 8, 2013
I had one of my best night's sleep since June, meaning that something must be working. Either the painkillers are knocking me out, or they are helping to ensure I am pain-free. My cough is slightly better and things are certainly starting to loosen up on my chest. We're back at the hospital on Wednesday, so at least I can have everything double checked to make sure my pain and cough is nothing more than a discomfort and annoyance.

Saturday, December 7, 2013
My new pain killers are starting to relieve some of the pain and discomfort I have been suffering. Unfortunately, these coupled with my new antibiotics just add to the daily tablet tally which is already a challenge.
My energy levels have been zapped and therefore, I am struggling to do things which I plan myself mentally. I have great intentions, just not the energy levels.

Friday, December 6, 2013
Through all of my coughing, I must have pulled a muscle as I could hardly move on Thursday night. After a night's rest, things hadn't improved and so we telephoned Birmingham for advice on what painkillers to take.
As the painkillers they suggested were prescription only and as my pains were getting worse, we had to resort to an emergency doctor. I was seen within 10 minutes of making the phone call and left with a prescription for strong painkillers and some different antibiotics. My GP agreed that the pain was most likely muscular from the coughing but it was a reassurance to have it checked by a professional.
The speed, concern and efficiency of my team at Birmingham and my GP is proof of a superb health system.

Thursday, December 5, 2013
Yesterday's early clinic appointment has taken its toll. I am extremely tired yet my continually blocked nose and cough means I don't put together too many hours of rest.
I have developed an agonising pain in my left shoulder and chest bone. I am hoping that it is just a pulled muscle or a trapped nerve from one of my coughing bouts. If it's still bad tomorrow, it will be time for some medical advice.

Wednesday, December 4, 2013
It was back to the hospital today. The 8.30am appointment was a nightmare in rush-hour traffic  but we made it. My blood counts are impressive and things are looking good. The doctors still want to keep an eye on my cough, especially as my antibiotics have now finished.
I have developed a rash on my arm and so evidence is needed to determine if this is a reaction to certain drugs or early evidence of the donor cells fighting with my body - GVHD.
To determine this, I had to have a skin biopsy taken - a punch takes a sample of skin for testing.
I had anaesthetic for the procedure which made it pain-free. I just have another battle scar to add to my increasing collection of marks.

Tuesday, December 3, 2013

Tomorrow we are back to the clinic for a bright and early appointment.
Although it is good to have blood tests taken and to speak to the doctors, it also fills me with fear as you never know what the results will say. You can turn up for clinic in the morning and find yourself back on the ward by the afternoon.
I've got to come to terms with these fears as I won't just be coming to clinic for a few weeks or months, we will be regular visitors for years to come. Birmingham really is now our second home.

Monday, December 2, 2013

A blocked nose and chesty cough is causing me a few problems. Whereas a healthy person would shake this off within a day or two, I experience everything two or three times worse and two or three times longer.

And as I am on so many medications, I cannot pop to the pharmacy and buy over-the-counter remedies to ease the situation either. I’ll be glad when I have managed to shake off this annoyance as at the moment it is keeping me awake at night and I have completely lost my sense of taste.

Sunday, December 1, 2013
Today is the day when we would normally decorate the house in preparation for Christmas.
We have a few decorations in place, but nothing to the scale as it usually is because I do not have the energy and there is only so much one person can do on their own.
Instead of 'decking the halls' in a single day, I think it will be done over several days or even weeks. Fatigue coupled with a very bad cough is a very difficult combination.

Saturday, November 30, 2013

My energy levels appear to be improving - I managed to last the entire day without having to have a nap.

Some of the doses of my tablets have changed since I came out of hospital which is making medication time easier. Although the quantity of tablets hasn’t particularly changed, the strength has, and therefore I am keeping nauseous feelings under control. Despite taking a total of six anti-sickness tablets each day, these struggled to keep my nausea at bay prior to my last stint in hospital.
We’re back at the hospital on Wednesday for an 8.30am appointment meaning we will have to leave home at 6.30am to get there on time.

Friday, November 29, 2013

I was discharged from hospital today – armed with a supply of potent antibiotics to help clear my infection.
My temperature is now under control, but I still have a chesty cough which is unpleasant and annoying. It’s been said to me that at the moment, I am like a new-born baby. I have literally zero immunity against anything and so whereas you would shake off this cough in a day or two, the same cough will take me a week or two to shift. For that reason, I won’t be venturing out of the house for a while.

Thursday, November 28, 2013
I was hopeful of a discharge from hospital today, but I am still here.
Instead of a move home, I was moved from my private side-room into one of the wards. I have now lost my nice view over Birmingham.
I'm due another CT scan before I can go home and so I am hoping this happens first thing on Friday.
Finally, we heard that my BBC Midlands Today appearance was shown on the Wednesday lunch time slot. We hope that this was just a filler as the scheduled broadcast date should be Sunday when the two rowers involved officially start their challenge.

Wednesday, November 27, 2013
My temperature is now under control, I am now hitting figures of 36.5 rather than 39.5.
Unfortunately, what goes in must come out, and so to rule out the possibility that my Hickman Line may be infected, I had it removed.
This plastic tube has been used extensively since June to deliver drugs as it removes the need for cannulas and needles.
My line was connected in my neck and  was threaded beneath the skin before protruded through my chest.
The way a line is held in place is with a special collar beneath the skin. This collar is made of a different material and encourages your skin and flesh to bond around it.
And so, to remove my line, the doctors had to slice into my skin to find this collar before they had to then dig and cut around this until the entire line could be pulled out.
Feeling squeamish? Thank your lucky stars that you didn't have to endure this procedure - while you are awake.

Tuesday, November 26, 2013
My temperature has been on a yo-yo cycle today, so it is hard to judge how well I am or how soon I will be out of hospital.
I have recorded a very pleasing 37.3 but also a sky-high 39.4, so only time will tell. I am also on a regular batch of antibiotics and paracetamols which have been keeping my fever in check.
I was sent for a chest x-ray late in the day, so the results from that will probably determine what happens tomorrow.

Monday, November 25, 2013

What a day - and it ends with me back in hospital.
If we rewind, Sunday night was awful, as I was awake for 90 per cent of the night with a chesty cough.
To make matters worse, we had to leave the house by 7.30am this morning to get to Birmingham for an out-patient appointment.
The day on the out-patient ward went okay and I had a bag of platelets as arranged. I mentioned to the doctor about the sudden onset of a cough and he prescribed a dose of antibiotics after checking me over. I would be returning to the hospital on Wednesday for another assessment anyway.
However, by early evening, we noticed that I looked and felt hot. We soon got checking my temperature using a multitude of digital thermometers - they ranged from 38 to 39.5 and so we were forced to dial the ward's emergency number. Anything over 38 is considered serious for someone in my position.
We were advised to make our way to A&E and so by 9.30pm we were on the road again arriving in Birmingham in record time.
The A&E department at Birmingham was busy but we were whisked through within minutes and I was soon having bloods taken, lines fitted and antibiotics pumped into my system. The speed and efficiency was superb - I had kickstarted an emergency plan and it was impressive to see it put into action.
By midnight, a bed was being arranged in my usual ward. After all of this drama it was somewhat of a relief to find my temperature was still high at 38.4 degrees. It would have been embarrassing if A&E had tested it and it was only 37.  

Sunday, November 24, 2013

Again, fatigue is the worst side-effect I am currently suffering. I could sleep 24-hours a day given the opportunity.

The whites of my eyes turned a shade of yellow earlier in the day causing us worry that my jaundice may be returning. Thankfully, this cleared over a few hours and was probably the side-effect of one of the tablets.

We need to be in Birmingham for just after nine tomorrow, meaning that I will have to be up and about extremely early to allow time for tablets and traffic.

Saturday, November 23, 2013

I could easily sleep for most of the day. I am trying to keep as active as possible, but even the slightest tasks leaves me exhausted and my concentration level is very low. I can probably only manage a couple of pages of the newspaper before I either feel tired or feel bored.

We've developed a better system for the tablets and Stephen is chopping some of the larger tablets into smaller chunks to make them easier to swallow.

Friday, November 22, 2013

The full reality of taking 34 tablets a day is hitting home. It's difficult trying to juggle the timings so that I am not taking handfuls of medicines all at the same time. Even with a timetable to follow, this isn't an easy task.

Towards the end of the day I started to feel extremely nauseous – the mistake of taking two of the most potent tablets together and then eating afterwards.

Thursday, November 21, 2013

I'm home. I was discharged from hospital today marking a total stay of 33-days - and 23-days since my transplant.
Of course, a leukaemia patient is a patient for life and so I will be coming back to Birmingham twice next week for routine check-ups.
For the next month or so our visits to Birmingham will be a twice-weekly affair.
I left hospital today with a huge bag of tablets. On my busiest days I will be taking 34 tablets - and although this reduces to around 30 tablets on a quiet day - I will be popping pills pretty much constantly.
Some of the tablets - penicillin (Phenoxymethylpenicillin) - for instance, I will be taking twice daily for the rest of my life.
What I noticed most when I walked out of the hospital, is that the temperature has dropped since I was admitted. If you remember, I was admitted on the evening after the BUPA Great Birmingham Run on October 20.
The next hurdle to overcome is the 'day 100' marker. My day 100 is Thursday February 6, 2014.

Wednesday, November 20, 2013

The doctors are really pleased with my progress as my white blood cell count has suddenly jumped to 2.4.
I should have been heading home today but the bad news is that I feel awful and was sick first thing.
I have therefore taken the decision to stay for an extra night to be on the safe side. It's a long way back should I get home and continue to feel ill.
If I wake up tomorrow feeling fine then I should be home for sure on my 33rd day in hospital.

Tuesday, November 19, 2013

The good news is that the bone marrow aspiration I had taken last week is showing signs of new cells.
The bad news is that these cells are not showing up as well in my blood, and so I am going to be in hospital another day or two.
The pharmacist came to see me today so that my drugs can be ordered ready for discharge. As he needs to come again to explain what to take and when, I suspect my bag of drugs from the hospital will be huge. I'm expecting my daily tablet dosage to run into double figures.

Monday, November 18, 2013
It looks as if I may be home in the next few days. The doctors are pleased with my progress and so steps are being taken for my discharge.
Many of the drugs I have been having intravenously through my Hickman Line have now been converted into tablet form - the downside to this is that I will probably have a dozen or so tablets to take each day.
Once home I am going to confined indoors for most of the time as my cell count will still be extremely low - plus I have lost all of the vaccines I had as a child.
I'm no longer protected against TB, polio, mumps, measles, chicken pox or any of the other vaccines you receive as you are growing up. And it's going to be a full 12 months before I can have any of the vaccines again so I'm going to be quite exposed.
Plus we'll still be returning to the hospital twice a week for the next few months for frequent check-ups.

Sunday, November 17, 2013

My cell count is still just above zero at 0.1 They are now fluctuating in numbers as they rise and fall but hopefully when I can show continued growth and stability in numbers I will be allowed home.

Today marks my 29th day in hospital so I’m now ready for a change of scenery. Steps are already being taken to prepare me for departure as many of my drugs which were administered intravenously are now being converted into tablet form. Fingers crossed, I should be home this week.

Saturday, November 16, 2013

It may be microscopic in size, but the doctors believe they are seeing the first tiny flickers of new cell growth – meaning my donated German cells have hopefully engrafted and are starting to produce new white blood cells. I am really starting to see signs of fatigue which is a common side-effect of a transplant. After a few hours of sitting in my chair I’m ready for another sleep.

Today I experienced excruciating pain in my legs and lower back and had to have my first dose of liquid morphine, I’ve always tried to avoid hitting the morphine but today the pain was too much to tolerate and I needed relief – fast. I had a similar pain yesterday and I’m beginning to link it with one of the drugs I am taking.

Friday, November 15, 2013

It has been a worrying few days. Earlier in the week I had a jaundice complexion and was starting to show signs of serious liver problems.

Thankfully, although I am still waiting for the results of today’s CT scan, the liver biopsy has returned clear results and my colour is returning to normal.

The doctors believe it may have been a reaction to one of the drugs I have to take each day to help my new cells.

I had a welcome surprise today in that BBC Midlands Today were filming at the hospital. The news team were here to film Alex Bland and Harry Martin-Dreyer, two men who plan to row across the atlantic to raise money for Cure Leukaemia and a diabetes charity.

The news team thought it would be good if the two spent a bit of time in a ward full of leukaemia patients and I was asked by the doctor if I would be willing to take part. I was interviewed by health correspondent Michele Paduano and was filmed walking around with Alex and Harry. It was a scary experience but I’m thrilled I was asked to take part.

Thursday, November 14, 2013

Things aren’t running quite as smoothly as everyone had hoped. As I’m now on my 26th day at the Queen Elizabeth Hospital in Birmingham, I should be preparing to come home.

However, my donor cells aren’t showing any sign of engraftment to form new bone marrow – a worrying prospect for me and the doctors.

To be certain as to what exactly is happening, I had to endure another bone marrow biopsy today. As this takes a sample of bone and marrow, it will allow the doctors to analyse the inner workings of my body.

If you remember in the summer, it took nearly eight weeks for my cells to reach a level when I was well enough to come home. I’m hoping that the answer to this current problem is the same – my body just takes a long time to recover and regrow cells.

And if the news couldn’t get any worse, there is still concern about my liver. My visitors assure me that my jaundice is fading compared to Tuesday when I was very yellow.

This liver problem means that I have also got to undergo extensive scans and tests tomorrow.

Wednesday, November 13, 2013

Concern over the increased size of my spleen, fluid retention and my jaundice complexion meant that I was sent for a liver biopsy today.

The process sounds scary but the wonders of modern medicine means that I was conscious throughout as an incision was made in my neck near to where my Hickman Line is connected and a cable was threaded down to my liver so that it could slice off a slither for testing.

The worst part of the test was having to lie down for six hours afterwards and my blood pressure and temperature monitored every few minutes.

We don’t know the results of the tests yet so hopefully Thursday will bring some positive news for once.

Tuesday, November 12, 2013

My enlarged spleen is still a slight worry. My day continued as normal with lots of rest until I discovered that tomorrow I have got to have a liver biopsy. I will be nil-by-mouth from 6am tomorrow. As one hurdle is overcome, one slightly higher takes its place.

Monday, November 11, 2013
Today was my worst day so far. It started at 3am when I had to call for the doctor as I had severe abdominal pain. This then sparked off a busy day of blood tests, ultra-sound tests and extra vigilance as it was discovered my spleen was slightly enlarged.
Being in such discomfort meant that I ate very little and it was hard to rest properly as I couldn't lie on my left side.
This is another of the many side-effects of a transplant either caused by the new cells themselves or from one of the many drugs I am taking on a daily basis.
I finished off the day needing three bags of blood and a bag of platelets which would run into the night.

Sunday, November 10, 2013
For the first time in weeks, I spent quite a few hours disconnected from what has been an almost continual run of drips. This allowed me to have a nice leisurely shower without having to worry about my Hickman Line, the drips or the very expensive electronic pumps which administer the correct dosage.
The doctors are happy with my progress and the only change in my health today is the yellowness of my eyes. This could be one of two things - a side-effect of one of the drugs I am taking or an early indication of Graft versus Host Disease (GvHD). I'm sure we will discover which one for sure early next week.

Saturday, November 9, 2013
My nose bleeds are finally starting to subside thanks to a mixture of platelets and clotting drugs. My mouth sores are also greatly improved and although eating is still difficult, I am managing to keep well-nourished which is important if I am to keep strong while my body is under great strain.

Friday, November 8, 2013
Today is my 20th day at the Queen Elizabeth Hospital in Birmingham.
I'm currently in 'limbo land' as I wait patiently for my new cells to grow. I am currently neutropenic which means I have zero white blood cells - making me extremely prone to infection as I have no cells to fight off any nasties.

Thursday, November 7, 2013

I'm now on since my transplant and I'm starting to feel very tired. Little tasks now require a lot of effort.

I'm also in quite a bit of discomfort with my mouth as I have sores and ulcers inside coupled with extremely dry and cracked lips. This has made eating increasingly difficult. Jacket potatoes which I can smash into a pulp coupled with cold jelly are my main menu until things improve.

To help boost my fluid levels I was given a 1-litre bag of saline over many hours and to stop my nose bleeds, I was given more platelets.

Wednesday, November 6, 2013

My blood levels are still recovering after the mixture of chemotherapy, radiotherapy and various other drugs. Hence today my platelet count was quite low and so I didn't really have much to clot my blood. This was evident in the form of an almost continual nosebleed.
As it is now day eight post transplant, it was also time for another bag of chemotherapy style drug designed to help my new donor cells engraft better. I have one more dose of this drug on day 12.
The late side-effects of the chemotherapy and radiotherapy are starting to show as my hair - which was growing back - is now falling out again.

Tuesday, November 5, 2013

I've had another good day with controllable side effects. I am managing to live with the sores in my mouth and so I am able to eat normally.
However, I am still on pain relief for pretty severe stomach cramps but luckily I am able to control these with standard pain killers without the need for morphine.

Monday, November 4, 2013

My side-effects are slowly easing. However, the worrying thought is that these side-effects may just be the result of some of the drugs I am taking and the late symptoms of my chemotherapy and radiotherapy. I'm sure when my cells fully kick into force, I will see more rough days in the future.

The doctors visit me every day and they are happy, so am I.

Sunday, November 3, 2013

Saturday night into Sunday morning was awful with my temperature hitting 38.5 degrees.

Having such a spike kicks in place lots of procedures so blood cultures were taken, I was swabbed for infection and sent for a chest x-ray.

Thankfully, as Sunday went on, my temperature level dropped back to normal but I was left with a headache which wouldn't shift.

My blood levels also needed adjustment so I was prescribed three bags of blood and a bag of platelets - these would take place through the night so I wouldn't be getting much rest Sunday night either.

Saturday, November 2, 2013
The side-effects have arrived. My mouth is extremely sore and eating is getting more challenging with every meal which passes. On top of that, I am suffering bouts of stomach ache and my temperature is beginning to climb again.
To round off what has been a difficult day, I also needed another dose of the new chemotherapy-style drug which I had for the first time on Thursday. I have this new drug on days two, four, eight and 12 after transplant, so I have two more doses left.
One of the main side-effects of this drug is a sore mouth, so i am in for some troublesome days ahead. I have already been advised that I may need morphine for the pain and liquid food.
Not forgetting that my platelet level is low and so I needed a transfusion.

Friday, November 1, 2013
My temperature behaved itself today, although I did feel cold in myself and needed to wrap up more than usual. As the expected side-effects slowly develop, I am beginning to feel more lethargic than I have before.
During one of my rest periods, Stephen went to visit another Burton patient who is being treated in another ward. It's amazing the bond you can create with other families who are going through extended periods in hospital themselves - especially when they come from the same town as you. We wish them all the best.

Thursday, October 31, 2013

It's still so far so good following my transplant. The nurses are keeping a close eye on my temperature as they are predicting s spike at some point but so far this hasn't happened. My temperature did steadily climb for a while but then it corrected itself.
I have started a new drug today which helps the new cells engraft to my bones to form new marrow. It's potent stuff which not every patient can handle. Unfortunately, it is another form of chemotherapy which brings with it the same side-effects.

Wednesday, October 30, 2013

It's so far so good with my new cells.
There was a noticeable difference today in that I am no longer permanently connected to various drips and drugs. I've had a couple of bags of fluid, but nothing like on the scale of the previous week. It is just a waiting game now.

Tuesday, October 29, 2013 – Day Zero

The day has come – the day when I am going to receive my stem cell transplant.

It’s funny in life how certain dates attract a lot of activity and October 29 is one of those dates for us.

Not only is October 29 the day I am due to receive my cells, it would also be my late mother’s birthday, my late brother-in-law’s birthday, and was also the day when one of my aunts died.

And so we waited, and waited . . . and waited for the cells to arrive. My visitors arrived at the hospital before 11am so that they didn’t miss the magic bag of cells. Unfortunately, storm St Jude had made its way over to Germany and was playing havoc with the flights. My cells did arrive in the ward on October 29 – at around 11pm - but it was just after midnight when they were finally up on the drip stand.

I’m still always going to class October 29 as the day when I had my transplant as this was the day when I first caught a glimpse of them in giant red cool box.

Monday, October 28, 2013

Today I was able to imagine that this time tomorrow, I should hopefully of had my donor cells. My German donor can go home proud in the knowledge that he or she has helped a complete stranger in a different country who speaks a different language.
Did you go home today with that sense of achievement? If not, sign up today and help someone like me.

Sunday, October 27, 2013

Today was the last phase of my chemotherapy. In theory, my body should be almost fully ‘conditioned’ now for the transplant on Tuesday.

So the difference between me and you, is that you have a healthy bone marrow producing infection-fighting white cells, whereas I don’t have any bone marrow whatsoever.

In fact, the treatment I have received to ‘condition’ my body means that my bone marrow would probably never recover on its own and a transplant is now essential.

I’m on a one-way street now with no turning back. So for all of you hoping these storms give you a day off work or a day off school, spare a thought that somehow through all of this chaos, a bag of stem cells has got to make its way from Germany to Birmingham.

Saturday, October 26, 2013

With radiotherapy over, it was time to start my weekend of chemotherapy.

Thankfully, I have coped with the side-effects of the drugs very well – the biggest drawback has just been the vast quantity of liquid.

My chemotherapy this time has to be flushed through with saline, so you can imagine with a litre of chemotherapy followed by a litre of saline running alongside my usual array of liquid drugs, I am taking in vast quantities of fluid.

Overall, I am coping with the treatment so far very well. I am still eating my meals and fully mobile.

My mystery donor will have probably been admitted to hospital by now as they undergo further fitness tests and medical checks.

Friday, October 25, 2013

Today was my last day of radiotherapy. When you're told that you will need four days of radiotherapy with sessions twice a day, it sounds daunting, but the process was actually much easier than I expected.

Fingers crossed, I haven't experienced any ill-effects from the radiotherapy and I quite enjoyed my trips from my ward in the new part of the hospital across the link bride to the old cancer department.

Tomorrow I start my chemotherapy – I doubt if this will leave me feeling quite as well.

Thursday, October 24, 2013

I ended my Wednesday diary by saying that I was being started on a new drip which commonly causes a fever. I can confirm that it does - I felt awful.

As the drip lasted six hours, it was the early hours of the morning before it finished, and then I needed a bag of platelets afterwards too - meaning my bed time was closer to 3am.

Thankfully, although extremely tired, by the morning the fever had passed.

My day today has been fairly standard with two rounds of radiotherapy and various bags of drugs. Unfortunately, by 6pm, I was due for another dose of the fever-inducing drip. But this time, it was fine.

Wednesday, October 23, 2013

It sounds like a cliché, but today has been a day of two halves.

For the vast majority of the day, I have felt fine and I am coping well with the total body irradiation. I have now had four sessions out of eight, so I am half way there and to date, I haven’t suffered any ill-effects.

The change in the day came around 6.30pm when I had my first dose of a new drug. The common side-effect of this drug is a fever and so the medical team did everything they could to minimise the discomfort. I had steroids, paracetamol and an antihistamine before the drip and the half-litre bag was delivered very slowly over six hours to help my body cope better.

The drug helps to minimise rejection of a transplant – in my case a bone marrow transplant – but I suppose it is also used for preparing patients for organ transplants. You may therefore find it strange to learn that this drug is commonly derived from horse or rabbit antibodies.

And so my day ended with me getting the chills and turning very tired, very quickly.

Tuesday, October 22, 2013

My treatment started in full swing today. I had my first dose of radiotherapy in the morning and then another early evening.
As I am having total body irradiation, this involved me sitting in a giant chair with my knees tied together while I listened to music.
After around 10 minutes, the radiotherapy machine was stopped and I was spun around so that my complete body was targeted.
In between this radiotherapy, I was started on a couple of different drips via my Hickman Line.
Just before my visitors left for the day, I was moved to a single side room with en-suite bathroom. Just as I had wished for, it has a nice view over the city.

Monday, October 21, 2013

It's been a very quiet day in hospital today. As I arrived last night, most of the pre-admission procedures had already been completed and so there was very little activity today.

I'm in a ward of four beds but I should move to my own private room very soon.

Tomorrow the process starts for real as I will have my first session of radiotherapy just after 8am with another session late afternoon. This will be the routine then until Friday.

Sunday, October 20, 2013 – Return to hospital

It's been an extremely busy day today - and I'm ending the day back in hospital.

We had only been at Birmingham's half marathon for 20 minutes when we got a call from the hospital to say a bed had become available today.

And so although we had the best intentions of cheering on Burton Mail reporter Rob Smyth and the rest of the Cure Leukaemia team, I had to dash home to pack my suitcase so that we could drive all the way back to Birmingham again.

What made the day busier is that we started the day in Warwickshire as we stayed over for the wedding yesterday.