Saturday, October 19, 2013
My last weekend before I return to hospital and there was just time to squeeze in another wedding - this time in Warwickshire.
The preparations for this wedding have been on a knife edge for some time as the date fell so close to my admission date, but thankfully everything is running to schedule and we were able to attend. As my hair is growing back now following my last batch of chemotherapy, I was able to ditch the wig and escape with just a hat.
Friday, October 18, 2013
Today I posted my first batch of used stamps to charity. After struggling to stuff the envelope into a post box we estimate there was just under a kilo of mixed franked stamps. They haven't cost anything to donate except a bit of time on our part trimming them from the envelopes but hopefully they will raise just a few pounds for Leukaemia Care.
You don't need to pledge tens of pounds to help a charity. Collecting used stamps or just using search engines such as everyclick.com raises cash without it costing you a penny.
Thursday, October 17, 2013
I have been busy packing my suitcase today. Unfortunately, I am not off to sunnier climes - however, I am likely to receive a sun tan on my visit.
As I'm sure you've guessed, I'm starting to pack my bags ready for my next stay in hospital and my sun tan will be the result of total body irradiation.
As my next hospital stay draws closer, my days are getting busier as I am frantically trying to pull in lots of jobs I am likely to miss in the next month when I am out of action.
By the time I emerge from the hospital, Christmas will be just a couple of weeks away so I am doing my preparations much earlier than usual.
Wednesday, October 16, 2013
Today the postman delivered my confirmation letter, so Monday is still D-Day.
The letter confirmed that I needed to return to my old ward at the Queen Elizabeth Hospital in Birmingham by 10am on Monday for some pre-admission tests.
By the afternoon I should have been swabbed for MRSA and other nasties and my bloods will have been taken and tested.
Monday is going to be very much like the day when you first check-in to a hotel. You do all the preliminaries and unpack ready to hit the ground running on Tuesday.
Tuesday, October 15, 2013
In the week before I return to hospital for more chemotherapy and radiotherapy, my hair has started to grow back.
This brings with it a new period of itching, but at least I have hair growth. As it is growing so well, I no longer bother with a hat in public either.
The public perception of hair loss has changed in recent years. If I had walked around with very little hair five or 10 years ago, somebody would have made a comment. Nowadays, because hair loss is accepted as the norm, nobody appears to notice never-mind make any form of derogatory comment. Over time, the public has learned that one of the most visible side effects of chemotherapy and radiotherapy is hair loss.
Monday, October 14, 2013
It was back to Birmingham again today for a routine blood test and check-up.
Everything is going to plan and my blood results are looking good. As this was my last check-up before I return to the ward, it was also a good opportunity for us to ask any outstanding questions about the transplant itself.
Sunday, October 13, 2013
The countdown has started. This time next week, I will only be hours away from returning to my ward at the Queen Elizabeth Hospital in Birmingham. As I have spent so much time in the ward before, I know how the ward is split into non-transplant and transplant sections. I also know that this time I will have my own private room with en-suite bathroom. All I ask for is a window room so that I can look out over the city, Internal rooms overlooking hospital corridors and other wards are not as appealing. A city-view room will make bonfire night far more entertaining.
Saturday, October 12, 2013
It is easy to underestimate the impact my daily newspaper diary has on readers.
Not a week goes by without a reader sending me a card, a letter, an email or a donation to pass on to a charity. My thank you messages today go to Mrs P Spencer and a reader identified only as 'J'.
These cards are truly touching, thank you for taking the effort to write to me. Also, Mrs Spencer, I have sent your donation to a charity close to my heart - Cure Leukaemia.
Friday, October 11, 2013
It was back to the hospital again today but only for a quick visit.
The dermatology team wanted to check the progress of the wound on my back. Everything is healing okay, it's just a slow process.
Today was one of those visits when the journey to the hospital took longer than the actual appointment, but that's okay as we would rather have lots of these short check-up visits rather than no appointments at all.
Our evenings are now spent cutting used stamps off envelopes - thank you to everyone who has donated. They may not look much, but they are worth pounds to the charities Leukaemia Care and Leukaemia & Lymphoma Research.
Thursday October 10, 2013
As expected, today was a busy day with numerous appointments for many different tests at various departments of the Queen Elizabeth Hospital in Birmingham.
The first lesson of the day was to never underestimate the potential congestion you are likely to face when travelling 35 miles to England's second city.
I made it on time - just - and went straight in for a lung function test - simplified as blowing into a big machine. Next was nuclear medicine where a radioactive dye was added to my bloodstream and then it was off to cardiology for an ECG and ECHO test.
With all of these tests complete it was a waiting game as I needed to have my bloods tested at hourly intervals. Tomorrow we're back at the hospital again - this time for the dermatologist, and then we're back again on Monday.
Wednesday, October 9, 2013
I had a day off from the hospital today, but I will certainly make up for it tomorrow and Friday.
Tomorrow will be the hardest and longest day to date as I need to have lung, kidney and heart tests. As the kidney tests involve a dye being added to my bloodstream, I will have to wait for repeat blood tests two, three and four hours after the initial kidney test.
My bone marrow test from yesterday has healed well which is pleasing as the last thing I need this close to transplant is a new infection or a wound which refuses to heal.
Tuesday, October 8, 2013
It was back to the hospital again today for a bone marrow aspiration.
This test comes in two parts but patients don't always need both sections to be completed.
One section involves a needle piercing your pelvic bone and withdrawing some of the liquid bone marrow for testing.
The second, and most painful part, is when a tiny sample of pelvic bone is extracted using a sharp cutting needle which is slowly turned by the consultant. Imagine a cork being drilled by a corkscrew being ever-so-slowly twisted.
Unfortunately for me, I needed both sections and although the consultant carrying out the test was extremely understanding and sympathetic, there is always going to be an element of discomfort with this procedure.
My bone marrow test today will be used as a baseline score. Around 100 days after my transplant, the results will be compared against these results - the post-transplant results will hopefully show that my cells are all of the donor variety and none of my own,
Monday, October 7, 2013
Today marked the start of a very busy week of hospital appointments.
First on the agenda was a meeting with the radiologist who explained about the total body irradiation I will be having the week before my transplant.
Patients with cancer in a very specific area usually have radiotherapy aimed only at that set part of their body, mine requires me to be zapped head to toe, twice a day for four days.
The most common side-effects associated with radiotherapy are hair loss, nausea, vomiting, mouth ulcers, lack of saliva, a sunburnt complexion, fatigue and maybe a higher chance of developing cataracts.
I was shown the giant chair I will be sat in for the process as I was measured by a radiographer. Body measurements along with your height and weight enable the doctors to precisely calculate the amount of radiotherapy needed. The sessions themselves will be pain-free and the state-of-the-art machines will allow me to listen to music during the process.
Next on today's agenda was a routine blood test at the clinic. All is looking good on that front.
Sunday, October 6, 2013
As promised, we are back into the swing of supporting various charities again today and so we headed over to St George's Park for the Cure Leukaemia football trophy.
The match was between Glascote Swifts and EnglandFans FC and ended 7-3. The teams or score didn't matter, we were there to support the charity.
It's been a busy weekend with Aston Villa on Friday night, Ride to the Wall on Saturday and this charity football game today, but as I will spend four of the next five days at the hospital, you might say this weekend was my last big blow-out before my transplant.
Saturday, October 5, 2013
Hundreds of people have supported my journey with leukaemia as they continue to religiously read my diary in the newspaper and online or they follow me on Twitter. Today was my day to show my own support.
Unfortunately, cancer has been a large part of my life for a few years. Leaving my blood cancer to one side, we have had family members succumb to pancreatic, breast, skin and lung cancer in the past years.
But today I left my vigorous cancer campaigning and awareness-raising to one side as I attended the Ride to the Wall event at the National Memorial Arboretum.
Surrounded by an estimated crowd of 20,000 people, it was a moving experience to watch the Military Wives choir perform and the Red Devils parachute into the grounds.
Today was a day for remembrance, tomorrow I will be back making sure we reach goals for earlier diagnosis, greater awareness and the eventual aim of a cancer cure.
Friday, October 4, 2013
Friday was a special day in my calendar as it was Cure Leukaemia's 10th birthday and the charity had invited me to help them celebrate at Villa Park.
The evening was superb with food cooked up by Michelin-starred chef Glynn Purnell which paid tribute to Birmingham's heritage - with a menu consisting of custard, chocolate and a special HP-inspired brown sauce renamed GP sauce.
A Birmingham charity hosting their birthday party at a Birmingham football club with a Birmingham chef meant there was a need a for Birmingham host and this was charity supporter Adrian Chiles,
What did I achieve from the party? I spent the evening chatting to former patients who are now cured following successful bone marrow transplants. When you speak to people who are 26 years post-transplant, you know you are in safe hands - the team at Birmingham are in fact some the best hands in the world for leukaemia care.
Thursday, October 3, 2013
A large part of the day has been spent trying to find a pharmacy able to prescribe some of the items on a prescription I now have for my Hickman Line maintenance.
As the items are not medicines as such - more medical style equipment - this has resulted in us trying three pharmacies in town. The third pharmacy on the list is still looking into the possibility of ordering in the items - but this too could result in a red light first thing tomorrow.
Hickman Line bungs and pre-filled saline syringes are not exactly everyday items for most people - they just happen to be important in our household.
Wednesday, October 2, 2013
The telephone is far more active in our house since my leukaemia - and many of these calls are various nurses or health workers.
Today's telephone calls brought mixed news. The good news in that a prescription I have been trying to sort has been arranged while the news I am not looking forward to is that I need to have another bone marrow test.
My bone marrow test will take place next Tuesday meaning that we will be at the hospital for four out of five days next week. Monday is the visit to see the radiologist, Tuesday is the bone marrow, Wednesday is free so far, Thursday is my busy day of various tests and Friday is another trip to the dermatologist.
Tuesday, October 1, 2013
The day started with the nurse coming to check the dressing on my back and to flush my Hickman Line.
I need to be as fit and active as I can be before my transplant and so regular walks of around a mile each time now have to be scheduled into each day.
Lunch was spent watching the DVD we were given at clinic yesterday on stem cell transplants
Some bits we knew but it was interesting to learn about the post-transplant support and education meetings.
The DVD heard from patients and nurses as well as many of the doctors who I have seen over the months at the Queen Elizabeth Hospital in Birmingham.
Armed with booklets, DVDs and a never-ending source of useful and useless information on the internet, I am heading for my transplant knowing pretty much everything there is is to know - both good and bad.
Monday, September 30, 2013
It was back to the hospital again today for another routine blood test.
All my results are fine and everything appears to be running like clockwork with regards to the timing for my transplant.
The dose of my medication has been increased slightly from 300mg twice daily to 400mg twice daily which meant another trip to pharmacy.
The bad news is that before my transplant I have got to have another bone marrow test taken. I hate these tests but sadly they are very much a common occurrence with my leukaemia.
We left clinic today with some evening viewing for when there is nothing on television (which is more often than not) - a DVD explaining the transplant process.
Sunday, September 29, 2013
It's exactly a month to the date (29th) until I receive my donated stem cells.
The week before this date I will be in hospital undergoing chemotherapy and radiotherapy, so I have just three weeks to go.
And these three weeks are going to be busy as the hospital tests and appointments crank up a gear as everything has to run like clockwork. While I am going through my various tests, my donor - be it a man or woman - in a city in Europe will be undergoing their own range of blood tests and fitness tests.
Planning such an operation takes immense teamwork between the NHS and Anthony Nolan charity in this country and the equivalent counterparts in another country. The factors of distance and language are just the tip of the iceberg.
Saturday, September 28, 2013
A letter I have been waiting for arrived with the postman today. It's the details of an intensive day of tests I must complete before transplant.
The day - on October 10 - will kick-off with a lung function test followed by a kidney test whereby dye will be added to my bloodstream. After this, it's down to cardiology for an ECG and ECHO heart test. Not forgetting that I will have to have blood tests taken two, three and four hours after the dye has been added to my body.
Friday, September 27, 2013
It was hospital day again today as I had a CT scan booked for the afternoon.
If you remember from my days back in the ward, the doctors discovered some nodules on my lungs. These have almost cleared up thanks to the medicine I take daily, and so this CT scan is just another routine check to make sure they are still vanishing.
It was the Macmillan World's Biggest Coffee Morning today and it was good to see a mobile trolley of tea and cake being wheeled around the huge open spaces at the hospital.
With the weekend off, it's back to hospital on Monday.
Thursday, September 26, 2013
It's back to the hospital again tomorrow for another CT Scan. Most people are 'lucky' if they get to journey inside one of these giant doughnuts once in their lifetime - this will be my second visit in the past month and that's not counting the multiple occasions while I was a patient in the ward.
The new creams, lotions and face wash prescribed by the dermatologist appears to be making a difference to the rash and dry skin on my face. It had started to improve by itself as my body accustomed itself to my tablets and now this added boost from these medicines has made it near perfect. I'm also pleased to say that my back appears to be healing well just lately - hopefully it will be almost healed by the time I return to hospital for the transplant.
Wednesday, September 25, 2013
Now the news is public about my transplant, I have been able to kick-start a lot of charity and fund-raising work - my way of saying thanks for the help I have already received and the help I may need one day in the future.
Today we collected another bag of medicines from the pharmacy - these are bits the dermatologist on Friday requested. I now have a special face wash to help the rash and dry skin on my face and I have another tube of ointment.
Thanks to everyone who follows me on Twitter - this is a great way to help promote various charities. My followers are increasing all the time as I now reach close to the 90 mark.
Tuesday, September 24, 2013
As we broke the news of my transplant on Monday, my diary for that day was very much focussed on that news too.
What we did on Monday is spend the afternoon in Birmingham meeting with my super team of consultant and transplant nurse.
It is so far so good as everything is running to plan with both my results and the various hurdles my donor has to overcome. We're back at the hospital again on Friday for another CT scan.
Meanwhile, today, the district nurse visited to check my back and to flush my Hickman Line.
The reaction to my donor news continues to grow with lots of support and messages of congratulations.
Monday, September 23, 2013 – Breaking the news
My big secret is now out in the open. You all now know that I have a donor match and that I will be going in for the transplant (fingers crossed) in late October.
Over the past couple of weeks it became increasingly difficult to keep the news under wraps especially when I'm writing a daily diary. How do I explain the reason why I suddenly need a dental check-up, a CT scan or extra clinic appointments without revealing the reason why?
Hopefully you understand the reasons why the news had to be kept quiet for a few weeks - as there are so many hurdles to overcome, we needed to make sure we were on the home straight before revealing the finishing post.
What I now need you to do is sign up to the bone marrow register yourself. I have a donor, but does your neighbour, your relative or your friend in need have one?
Sunday, September 22, 2013
Today was World CML Day. This probably means nothing to most of you, but CML is the type of leukaemia I have - Chronic Myeloid Leukaemia.
World CML Day is held on 22/9 for a reason. Here comes the scientific bit - CML is the result of chromosomes 22 and nine mutating to create the BCR-ABL gene, hence 22/9 is the perfect day to hold such a day. And 09.22 is a very special time.
World CML Day is an important day when top physicians join forces to discuss everything there is to know about CML, it is also a day when people with CML celebrate life and show their appreciation for all the wonderful work leukaemia doctors complete on a daily basis.
Saturday, September 21, 2013
I am continuing to itch - both from my scalp and my eyebrows.
You would think with less hair that life becomes easier but it's really quite the opposite. I am finding I am having to wash the minimal hair I have more often as it becomes greasy much quicker than when you have a full head of hair.
My Twitter account is only a week or so old and I am pleased that I am already clocking up close to 50 followers - from all over the country and abroad. Love it or hate it, social media is a very effective way of getting a message across to a lot of people, fast, free and with minimum effort.
Friday, September 20, 2013
My campaign to save used postage stamps for charity hit the headlines today and it was encouraging to hear that within hours of the story breaking, they had donations arriving at the office. We should soon be able to raise a few pounds for some vital leukaemia charities without it costing us anything.
It was back to Birmingham for me today. My blood results were fine and I am due to return on Monday for another meeting. Meanwhile, we spent a few hours with the dermatologists who examined my back, the remnants of the rash on my feet and the dry skin on my face.
It was a long but very productive day at the hospital, finished as usual, with a trip to the pharmacy for more cream.
Thursday, September 19, 2013
Tomorrow marks the start of a busy week with lots of day visits to the Queen Elizabeth Hospital in Birmingham.
Over the next seven days I have at least four appointments booked - all on separate days - and the results of any of them could mean extra appointments on top as well.
We kick off tomorrow with a routine blood test in the clinic followed by an appointment at the dermatology ward. These skin experts will want to check on the progress of the skin biopsy on my back as well as checking the remnants of the skin rash I had when I was an inpatient on the ward.
Next week we have another CT scan plus a few appointments with various consultants and specialists who need to chat about the next stages of my care.
My campaign for used postage stamps has now started. Please save them and drop them off at the newspaper office so that we can help Leukaemia Care and Leukaemia & Lymphoma Research.
Wednesday, September 18, 2013
I have a strange phenomenon - itchy eyebrows.
Before my hair started to fall out from the chemotherapy, I used to suffer with a very itchy scalp. I am wondering if my eyebrows are now going through a delayed version of the same process or if this itching is a side-effect of my new tablets.
Quite a few hours today was spent dealing with charities as I plan to launch a used stamp collecting scheme to raise money for charities.
A kilo of used stamps may only return about a fiver for the charity, but it is five pounds more than if these used stamps went off to the recycling plant.
Tuesday, September 17, 2013
Leukaemia coupled with the side-effects of various tablets, can make you very tired and so I am still recovering from the weekend.
Add to that the recurrent problem of an itchy scalp and the rash on my face.
In a bid to ease my discomfort, Stephen piled the E45 cream onto my face as if he was icing a cake - which relieves the itching but makes you feel that you are smeared in grease.
The nurse also came today to change the dressing on my back and to flush my Hickman Line.
This Friday we have an appointment with the dermatology team who carried out the original skin biopsy.
Monday, September 16, 2013
The busy weekend in London has taken its toll on me.
I have been extremely tired today as I slowly try to recover from late nights and lots of walking.
My reduced energy levels mean that I am fine during all of these events, I just have to pay a higher price for longer afterwards. A busy weekend knocks me back for a couple of days.
It's also difficult to plan extended hours of rest when you have to be aware of tablet and food timings so as not to mess up my ongoing treatment.
I will be back to normal after a couple of days.
Sunday, September 15, 2013
Times may be tough, but it is good to see so many people doing great things for charity.
Yesterday while in London I saw lots of riders from the Bikeathon ride held to raise funds for the Leukaemia and Lymphoma Research charity. While in Newcastle, the Great North Run would have helped raise funds for hundreds of different charities.
It will soon be time for our own charity fund-raisers to get pedalling and get running for Cure Leukaemia. Please dig deep and sponsor Rob Smyth and Geoff Merryweather on the Just Giving site.
Saturday, September 14, 2013
Today was a very rare change for me - we went off to London for a wedding. The Houses of Parliament to be precise.
Of course I had to be armed with a bag full of medicines and my emergency medical card just in case I was taken ill, but we made it.
Choosing what to wear is now made increasingly tricky because of my Hickman Line - anything too low-cut and you can see the dressing over where the tubes protrude.
A new technique of hair nets and hair clips also meant that I managed to wear my wig and a hat all day - and until I told them, nobody even knew it was a wig.
There comes a time when people ask you where you had your hair done, that you have to break it to them that it came out of a box.
Friday, September 13, 2013
I'm pleased to say that with copious amounts of E45 cream, my rash is behaving - even though I am on higher dose medication.
I've also been experimenting more with my wig and after lots of trial and error, I'm beginning to get used to wearing it - hair nets and hair clips are the answer along with a lot of patience.
Yesterday I mentioned I had set up a Twitter page @Leukaemia_and_K. I'm new to this world of social media and so I am gradually getting to grips with it and I'm slowly building followers. Thank you if you are one of those.
Thursday, September 12, 2013 – Making it on to Twitter
It was back to Birmingham for another routine clinic appointment.
My white cell count is now climbing steadily back to what is a normal level and so the dosage of my new tablets has been increased. As these tablets have caused me a few side-effects, I just hope this increased dose doesn't mean more or worse effects.
A skin specialist also checked the wound on my back and it looks as though everything is heading in the right direction - helped in part by my increased white cells.
For the social media lovers, I have also set up a Twitter account.
This diary will continue as always, the aim of the Twitter feed is to raise greater awareness of blood cancers and the charities battling to combat the disease - principally, useful information I cannot fit into these updates. You can follow me at @Leukaemia_and_K.
Wednesday, September 11, 2013
My involvement with so many health services means that life can be pretty chaotic and unpredictable. Take for example a telephone call at 12.45 today telling me that a space at the emergency dental clinic had become available - and so we needed to be at the Stockland Green Health Centre in the Erdington region of Birmingham by 3.30pm.
Admittedly, events like this would be frantic for most people but we have become more accustomed to these unpredictable days - we do of course have to drive around with a hospital bag in the boot of the car at all times just in case I take a funny turn.
As for the dentist . . . Everything went fine.
Tuesday September 10
If I could get my hands on a big vat of Calamine lotion, I would dip my head straight in.
For a few days now, my scalp has been itching. I have suffered from this irritation once before when undergoing chemotherapy and put it down to my hair follicles being killed off by the chemicals.
As my hair follicles are already dead, the problem cannot be attributed to the same cause this time. So after a little research on the internet, I discover it is another common complaint caused by my new tablets.
Apart from washing my head in bicarbonate of soda as one patient advises, I am going to stick it out. According to these 'web experts', the itching and my rash should disappear as my body gets used to the tablets - we hope.
Monday, September 9, 2013
As the days progress, I am beginning to discover the true scale of the side-effects of my new tablets - the main one being a rash.
To help ease the redness and itching of this, we have turned to a tub of E45 cream as recommended by the pharmacist.
As my hair continues to thin, it's becoming increasingly necessary to wear my hat. Although we have a very nice wig from the hospital, I fear it will take some getting used to as it has s tendency to make my scalp itch and so far I have only worn it for minutes at a time.
I think I am going to be more of a hat and bandanna person rather than a wig wearer.
Sunday, September 8, 2013
I don't class myself as a hardcore football fan, but today there was a match played which every club, fan and player should be proud of.
Former Aston Villa and Celtic player Stiliyan Petrov hosted a charity match in front of 60,000 fans to raise money for a new leukaemia charity he is launching. The support of fans and the stellar line-up of players was an amazing tribute to the former captain.
Stan as he is known to his fans, admits his leukaemia has been the darkest and most frightening times of his life - as his tears at the end of the match showed.
Until you have been through this hell yourself, you can't imagine how Stan feels. It's unfortunate I know exactly how Stan feels.
Saturday, September 7, 2013
My daily tablet ritual is now getting easier as my consultant on Thursday stopped a few of the pills I was taking and my antibiotics have now finished their course too.
So instead of taking an average of 14 tablets plus four spoonfuls of medicine and two doses of foot cream each day, I am now down to a mere four tablets plus my medicine and cream.
For the accountants reading this, I'm sure it must fill you with fear that some of my tablets are rumoured to cost around £22 each.
Friday, September 6, 2013
Each day the postman delivers letters from the hospital detailing more appointments with different departments. Today's letter was to confirm my visit to see the radiologist at the dedicated cancer centre at the Queen Elizabeth Hospital.
This meeting will allow the radiologist to plan his radiotherapy so that it will have the best impact while it will allow us to ask questions about the process. So far I already know that it is going to be two sessions a day for four days.
I've read that radiotherapy can give you a slight sun tan - as my treatment is full body radiotherapy, I should be bronzed head to toe afterwards.
Thursday, September 5, 2013
We're becoming a familiar and popular couple in the haematology clinic as every consultant, pharmacist and nurse makes an effort to speak to us on first name terms. I suppose they only see some people once every couple of months for a check-up while they are seeing us twice a week at the moment.
Today was another very busy and productive day in clinic - and I was checked over head to toe.
My blood counts have remained fairly stable and therefore I am sticking to my current dose of two of the potent anti-cancer drugs each day. As time goes on, I am noticing more blemishes on my skin and suffering a few more headaches but these are common side-effects of these tablets,
My consultant is arranging for me to see a specialist soft tissue consultant next week so that they can assess my back. He also wants me to have my teeth checked fairly soon and so instead of trying to battle for a routine appointment at my usual dentist, I am booked in to see the hospital dental team.
The CT Scan last week showed a slight improvement with whatever nodules are on my lungs but as these haven't fully cleared, I am booked in for another CT scan also.
I've also got kidney, liver and heart tests lined up over the next month.
I'm glad I'm not a hospital accountant as my shopping list of scans, tests and specialists from today alone must cost tens of thousands of pounds - not forgetting we left the hospital again with bags brimming with repeat prescriptions and equipment to flush my Hickman Line.
Wednesday, September 4, 2013
It's back to Birmingham again tomorrow, but what's significant about this appointment is that it was booked in early May. This appointment was booked before everything kicked into overdrive and is an example of how simple life could have been.
Instead of having months of freedom between visits, I am barely having two days go by without either a return visit to hospital or a visit at home from a health worker.
Instead of having weeks of glorious sunshine at home or abroad throughout June, July and August, I spent most of my time confined to a hospital bed.
I'm pleased with the stage I am now at with my treatment, but it has been a hard process to get to this point and I would have preferred not to have seen Birmingham at all between May 7 when the appointment was booked and September 5.
Tuesday, September 3, 2013
The side-effects from my new tablets are now developing. Thankfully, the headache I suffered for a few hours on Sunday hasn't returned but I am developing slight skin rashes and blemishes.
The nurses came today to flush my Hickman line and check my skin biopsy site - as I am likely to need these two intrusive silicon tubes poking out of my chest until the middle of next year, I am gradually learning new ways of showering and dressing myself without getting them wet or without ripping them out of the main vein they connect to inside.
Monday, September 2, 2013
Today we headed back to Birmingham for some precautionary blood tests because of the new tablets I am taking.
My white cell count continues to rise meaning that I am now able to double my dose of these new pills. The bad news is that my haemoglobin - my red cell count - has fallen again and so I am expecting a blood transfusion when next in Birmingham on Thursday.
More good news today is that the A38 tunnels which have been closed for six months have reopened - shaving a good 20 minutes off the journey time.
Sunday, September 1, 2013
It's back to Birmingham again tomorrow for another check-up as my doctors see how well I have taken to my new potent anti-cancer drugs called Nilotinib.
One of the common side-effects alongside tiredness and nausea is a headache and that's what I've suffered with for a few hours today.
So far I appear to be coping okay with these new tablets, I'm just keen to see what impact they have had on my body - the white cell count and platelet levels we have been waiting for to increase will now have taken a knock backwards.
Saturday, August 31, 2013
My hair continues to fall out by the handful - especially after it has been washed.
I'm surprised I still have as much left as I do because it has been falling out on a daily basis since I started the Flag/Ida chemotherapy at the end of June.
Today the wound on my back was checked and dressed by a specialist nurse and I've now fallen into a routine with the many tablets I now take on a daily basis.
Friday, August 30, 2013
It's so far so good with my new regime of tablets - in terms of side-effects anyway.
The downside is that I am struggling to know when to eat because of the strict timings. I'm hoping that once I have ironed out a strict timetable, this will become easier.
The tablets stipulate I cannot eat two hours before taking them or an hour after taking them - which is fine, unless you are taking multiple pills which share the same rules and ideally shouldn't be taken at the same time.
We return to Birmingham on Monday to see how these tablets are performing - if the consultant is happy, they will double my dose meaning tablets in the morning and evening.
This skin biopsy wound on my back is still a worry especially as it is now quite painful.
Thursday, August 29, 2013
It's been a long, busy and productive day in Birmingham and so there's plenty of news.
My cell count has now increased to 2.4 which means I am now able to start taking some new anti-cancer tablets which I will continue to take until transplant.
Before my leukaemia escalated, I was able to control my condition with six daily Imatinib (Glivec) tablets. These new tablets are a more potent and advanced variety of these called Nilotinib.
As these new tablets are so potent - bringing with them a new batch of side-effects - I am due back in Birmingham on Monday for another check-up.
Some trivia for you - patients taking my medication cannot eat grapefruit or Seville oranges.
We spoke in detail today with one of the specialist transplant nurses who explained that because of my age, I am also going to have to have radiotherapy as well as more chemotherapy prior to transplant.
He also explained how the process works in tandem with any potential donor who has his/her own set of hurdles to overcome as they are tested for matching as well as being screened for hepatitis and HIV.
Lots of nurses took an interest in the wound on my back today and so we also had to make a visit to my old ward to collect some specialist dressings for my daily district nurses. A swab was taken to check for infection and as a precaution, I have been prescribed a new batch of antibiotics.
Not forgetting of course that today I also had to have a CT scan - the results of which will be revealed on Thursday when we return to Birmingham for the second visit of the week.
As my treatment starts to escalate, it looks as though I will be gradually increasing my visits to Birmingham week on week until I am admitted again for transplant which will be an intensive four or five week stint in ward 625.
We left today's five-hour visit to Birmingham with a carrier bag brimming with new tablets and booklets to read on preparing for transplant.
Things are certainly moving in the right direction and plenty of work is going on behind the scenes to find and match a donor.
Wednesday, August 28, 2013
Tomorrow is D-Day again and it's hard not to feel anxious before my next session of tests in Birmingham.
We're expecting the visit to be lengthy as I have got to have a CT scan as well as my regular blood tests.
The nurses came today to check my wound and as it's now quite painful, they share the same concerns as me. It's almost six weeks since this wound started to cause me problems but my lack of platelets means my healing time is far slower than normal.
On a positive note, my dad was discharged from Glenfield Hospital in Leicester today.
Tuesday, August 27, 2013
On the rare occasion when I managed to watch some television in-between our trips to Leicester, I caught the new Anthony Nolan charity advert.
Yes it is hard-hitting and as is typical today, many go online and vent their disappointment at how the advert is the same old 'sob story'.
Living with leukaemia is not a sob story, it is very real. It is a killer condition which doesn't care whether you are young or old, fit or unhealthy.
Only one in three people find the life-saving bone marrow donor they desperately need. One survives, two won't - how do you make this message into anything but a sob story?
Monday, August 26, 2013
It may be a bank holiday but my routine remains the same.
My nurse came to check my skin biopsy dressings while I followed the strict timetable of tablets and medicines while Stephen kept a check on my temperature.
As well as visiting my dad in Leicester I spent a few hours trying to drum up sponsorship support for Rob and Geoff from the Mail who have put themselves forward to raise cash for a charity close to my heart - Cure Leukaemia.
Sunday, August 25, 2013
I am getting a little compulsive when it comes to alcohol cleansing hand gel.
While my cell count is low, I have to be careful not to subject myself to infection risks.
But while my dad is recovering in hospital, this is harder said than done and so I am compulsively cleaning my hand with gel while Stephen bans me from touching door handles or hand rails and we now always take the stairs rather than risking confined lifts.
As well as having a low cell count, I also have low platelet levels which means I am still not allowed to drive - I haven't driven since the weekend before I was diagnosed in April.
Saturday, August 24, 2013
I'm celebrating as I have white half-moon shapes on the base of each of my nails.
Most of you probably think I am mad as everyone has these shapes known medically as lunula.
I did have them, but then earlier this year before I was diagnosed, mine vanished completely.
We thought the obvious that it was maybe a calcium or protein deficiency but never investigated further as you can't really go to your doctor just to ask why your half-moons have vanished.
I believe mine was another sign of the serious illness taking hold within my body.
Leukaemia messes up your blood as it kicks into overdrive producing endless white cells and with so many white cells to support, I probably was calcium and protein deficient as well as being anaemic.
We are finding lots of niggles which we discounted as being significant on their own, when added up together, form the common side-effects of leukaemia.
Friday, August 23, 2013
Today was a worrying day as my dad went for a 'cabbage'.
The correct medical term is 'CABG' (coronary artery bypass graft surgery) - better known to me and you as a heart bypass.
We packed up my Mary Poppins' bag of medicines to last me for a few hours and anxiously waited in the intensive care department for my dad to exit following four-and-a-half hours of surgery.
Thankfully, everything went to plan and although unconscious, his progress is good.
You know you have spent far too many hours in hospital when you can chat to nurses in technical language about various bits of apparatus and drugs.
Thursday, August 22, 2013
As thousands of teenagers awaited their GCSE results, I waited anxiously for my latest blood results.
The bad news is that the latest super-strength medication I have been taking for my lung infection has the known side-effect of lowering certain blood cell levels - and this is what has happened.
My cell count has dropped from 1.2 white cells last week to 1.1 today.
The doctors need my count to rise so that we can start some new anti-cancer tablets before any possible transplant can take place.
It looks as though I will soon be making two trips each week to the clinic in Birmingham as we slowly move towards the next stage in my treatment.
Meanwhile, my dad undergoes a quadruple heart bypass tomorrow in Leicester.
Wednesday, August 21, 2013
I return to Birmingham tomorrow for my weekly check-up.
What we are really hoping for is news on when I will be returning to ward 625 for my transplant.
I love my time away from the hospital but what we all know is that I have at least another month or two of treatment to come and therefore I want to get these necessities over and finished sooner rather than later.
It is nearly September now and clearly with a month or two of treatment to come, I certainly don't want to be residing in ward 625 close to, or worse still, over Christmas.
Today has been my usual routine of a nurse visit and then over to Leicester for visiting.
Finally, it was a shame to hear fellow-leukaemia sufferer and former ward 625 patient, Stiliyan Petrov, (former Aston Villa captain) has had to take a break from his new job following his remission from the condition. I wish him well.
Tuesday, August 20, 2013
Today I had three nurses arrive to flush my Hickman Line.
Remember my Hickman Line consists of two white plastic tubes which dangle from my chest, they then burrow beneath my skin and are connected to a main artery in my neck.
At the end of these tubes are rubber connectors which can be screwed onto syringes for the quick and easy administration of drugs or for blood to be taken for testing.
The unfortunate part about these tubes is that they are prone to infection and so the nurses came to flush the tubes and change the nozzles. This is going to be a regular task as I have these tubes in place for up to 18 months.
I've had my CT scan confirmation letter for next Thursday in Birmingham and my dad is still waiting in Leicester for what we now believe to be a quadruple heart bypass.
Monday, August 19, 2013
The skin biopsy site has been quite painful over the weekend and so I was pleased when the district nurse arrived this morning to give it a thorough check.
It still continues to weep and needs regular re-dressing but it is starting to heal. The dermatology clinic at Birmingham has also sent me a an appointment to have it checked over again in September.
My dad's had news about his condition, and it looks as though he will be having a triple heart by-pass on Friday. Thankfully, the timing has worked so that I am out of hospital while he is in hospital.
Sunday, August 18, 2013
I continue to play visitor rather than patient as my dad remains in hospital.
Since being discharged myself, we are now coping well with the endless timetable of tablets, medicines and creams and Stephen does a good job in between the nurse visits to make sure the dressings on my back and around my Hickman Line are clean and tidy.
We're expecting a busy week with my usual clinic check-up on Thursday plus the potential for a visit to the dermatology ward and maybe a chat with the bone marrow transplant nurses also due any day. Plus between all of those slots in Birmingham, we will be visiting my dad in Leicester as well.
Saturday, August 17, 2013
As my dad remains in hospital in Leicester, I had to contact my ward in Birmingham to check on visiting advice.
Because my low white cell count leaves me prone to infection, I was allowed to visit but it had to be kept short and sterile.
I'm enjoying my freedom away from hospital but until my counts improve, I have to be extremely careful as to where I go and who I see. I am also getting used to completing daily tasks without catching the two dangling tubes from my Hickman Line.
Stephen is being a good nurse keeping my temperature monitored - 36.9 was the figure today. If it hits 38 or above, I am back in Birmingham within the hour.
Friday, August 16, 2013
I may be home but I am also extremely busy. The morning started with a visit from my district nurse and then before lunch I had spoken to specialist nurses in Birmingham on the telephone three times, collected a prescription from my GP and then travelled around Burton searching for a pharmacy which stocked the required medicine,
The reason behind this adventure is that my bronchoscopy results from last week now show an infection on my lungs and the tablets needed to treat this condition are so rare it took us to four different pharmacies in the town to track down the medication.
Today would have been the day we flew to Venice ready to board a cruise ship for our holiday - a lesson for everyone to make sure they have good travel insurance.
Thursday, August 15, 2013
After a day at home, it was back to the hospital again today - but this time as an outpatient at the haematology clinic.
My blood count is still recovering - the current cell count is just 1.2.
The good news is that there is growing optimism that I may not have to undergo a second round of the Flag/Ida chemotherapy I have just been through, instead, we may move straight to a bone marrow transplant - if a donor can be matched.
Meanwhile, as I enjoy time at home, my dad is now in hospital at Leicester.
It's a never-ending cycle of trauma and hospitals in our household.
Wednesday, August 14, 2013
This was has been my first full day at home since June 24.
But despite being home, my medical treatment continues. The district nurse arrived to check and change my dressings first thing and then my day revolved around a timetable of tablets, creams and medicines.
I managed to venture outdoors to the convenience store but this was quite a challenge - I'm not used to walking more than 50 metres at any one time. It's going to take a while before my energy levels return to normal.
I'm also immensely aware of being too close to people who I haven't been in regular contact with in the past few weeks for fear of infection - my regular band of visitors have spent so many hours confined to the same hospital ward as me, they are unlikely to be carrying any new infections.
Today also marked the day that I was able to open all of my cards and presents as I didn't get chance to open any yesterday.