Tuesday, August 13, 2013 – Discharged from hospital
Good news, apart from being my birthday, today I was also allowed home.
Before you pull the party-poppers, the reality is that it was gone 9pm before I managed to set foot out of the ward and so not getting home to Burton until 10.20pm meant my cards and presents have remained unopened.
My leaving presents from the hospital included a bag of dressings to give to the district nurses for my back and a bag of new nozzles, clamps and cleaning fluid for my Hickman Line which remains in place.
The pharmacy team also equipped me with endless different tablets, medicines and a bottle of that awful anti-fungal fluid. So many that I need a timetable to ensure I remember them all.
Leaving was difficult because after more than seven weeks in hospital, you accumulate a lot of stuff and so Stephen's present from me was two trips to the car with two small suitcases, two holdalls and endless carrier bags - I don't travel light.
Monday, August 12, 2013
For the first time I made an entire day without having to be connected to some form of drip.
And as I start my eighth week in hospital today, it is only fitting that eight doctors should come to visit me.
Progress is good. Hopefully home this week and there is talk of finding some tablets to keep my condition under control for the days I am at home.
As for the fungus on my lungs, a team in London are taking a closer look at that problem.
It's my birthday tomorrow and it looks as though I will be spending at least part of the day in the ward.
Sunday, August 11, 2013
I started the morning with a refreshing shower which really helps to revitalise your mind and body. It does have one drawback in that it means all of my dressings need to be redone.
My doctors continue to be pleased with my progress but it looks as though I will still be in the ward as we start my eighth week in hospital.
The new anti-fungal drip I have started may have side-effects on my kidneys and so I spent most of the afternoon hooked up to a giant bag of saline.
The downside to this is that it tied me to the ward for hours on end - thankfully, the doctors agreed to pause the drip so that I could spend some time out of the ward at the hospital restaurant.
Saturday, August 10, 2013
Day 48 for me in Birmingham was relatively quiet. The haematology department rotates doctors on a fairly frequent basis to keep the team fresh and on their toes, and so today was my first meeting with the new batch of doctors.
My progress is good and everybody is hopeful that I can spend some time away from the hospital for my birthday on Tuesday.
My skin biopsy site is still healing and so I had three doctors and two nurses take a look at it today.
My medication list is now minimal with just a new style anti-fungal drip and some additional foul-tasting fungus liquid.
Friday, August 9, 2013
I've reverted back to being a patient again today after enjoying a few hours off the ward in the past couple of days.
In preparation for my lung inspection - a bronchoscopy - I was given three bags of platelets. I was also nil-by-mouth which meant I would miss out on breakfast and lunch.
I was taken down for the procedure at around 1.15pm and was given a dose of sedation through a cannula in my arm and an anaesthetic spray - but as usual with sedation, it didn't really work and I felt every movement.
I am pleased that I wasn't 'knocked out' for the procedure as I was able to view every movement as the camera went from lung to lung until we found the mass in question.
I was still smiling when I returned to the ward as the procedure went far better than I anticipated.
The skin doctors visited again in the afternoon and I was hooked up to a new custard-coloured anti-fungal drip in the evening.
Thursday, August 8, 2013
It's been a busy day for me today but I still managed to grab a bit of time out of the ward.
First was the visit by two foot doctors followed by my four specialist doctors.
Then we had another CT scan, the four stitches removed from my skin biopsy and then another bone marrow biopsy. All intermingled with a couple of drips and a handful of tablets.
We didn't venture far on my outing from the ward today - but just a trip to the hospital restaurant is still an adventure.
When I got back to the ward at 9pm I was given some unexpected news by the specialists. The CT scan is still showing up a lung nodule and so I am placed on another custard-coloured anti-fungal drip and put on a nil-by-mouth regime again as I have got to have a camera placed into my lungs tomorrow.
Wednesday, August 7, 2013
I did it again. My cell count on Tuesday was the magic 0.5 figure which was my key to getting out of the ward.
And today, I am climbing fast at 1.1.
My medication list is now fairly minimal with the anti-fungal drip switching to every two days instead of every day and many of my antibiotics have now completed their course.
As I was out of the ward much earlier today, it gave me time to make the journey home to Burton before returning to the ward at 10pm.
A lot depends now on how they opt to progress with my treatment as to whether I will soon be home for a few days or weeks or if the next phase starts now.
Tuesday August 6, 2013
I made it, at last. My first sight of the outside world and fresh air in the past 44 days.
Bit before I could venture into the outside world I had my usual range of drips and the dressings on my skin biopsy wound changed.
The doctors reminded me again about the need for a fresh bone marrow biopsy and so I suspect this procedure is getting closer.
By the time all of this treatment for the day was complete, it was around 5pm and I was told to be back on the ward by 10pm.
I was pleased in that I managed to walk the entire distance from the ward to the car park - which considering the size of the hospital - is an extremely long way when you haven't really moved much in seven weeks.
I had a nice evening out before arriving back at the ward at just before 10pm. Now I have done this once, hopefully more outings can follow.
Monday, August 5, 2013
The daily game of cell count yo-yo continues as I have dropped again from 0.4 to 0.3.
Always so close but not quite close enough to hit the magic 0.5.
Today marked the start of my seventh week at the Queen Elizabeth Hospital in Birmingham and aside from my ping-pong cell counts, the doctors are pleased with my progress.
The skin doctor visited again today to examine my feet and it looks as if his next job will be to take some sample clippings of my toe nails,
Meanwhile, it looks as though I have another CT scan and maybe another bone marrow biopsy on the cards sometime this week.
Today consisted of my usual batch of anti-fungal and antibiotic drips as well as two bags of blood.
Sunday, August 4, 2013
Another quiet day on the ward without too much news to share with regards to cell counts.
My temperature and blood pressure remains stable while I continue to have endless bags of antibiotics connected to my Hickman Line along with my usual anti-fungal drip and a bag of platelets.
Tomorrow marks the start of my seventh week in Birmingham and hopefully my last for a little while as my ambition is to be home this week as it's our fifth wedding anniversary on Friday and my 33rd birthday next Tuesday and I want to celebrate both at home.
Saturday, August 3, 2013
More good news was on the cards today as my neutrophil cell count is now 0.4.
Remember the magic number I have to hit on two consecutive days before I am allowed home is 0.5.
Yes it's close, but it's too early to get the bunting out as there's also a lot riding on my temperature and blood pressure remaining stable, and me being able to have the many medicines I take in drip form being available in tablet form.
My future treatment is still undecided and so nobody knows yet if I will need to repeat this intensive course of super-strong Flag/Ida chemotherapy or if we take a different approach - the results will hinge on yet another bone marrow biopsy. At the moment, my main ambition is just to be able to go home after this first round which has so far taken 41 days.
Friday, August 2, 2013
Another busy day on the drip front but with only one of my two Hickman Line inputs being used today.
The day was fairly mundane compared to some of the hectic days I have had recently. My only specialist visitor today other than my usual team of doctors was a skin consultant. She took another look at this biopsy wound on my back and gave the ward nurses directions on how to apply a new steroid-based cream I have been diagnosed.
Overall, both the rash on my feet and the skin biopsy site are healing very well. There has been a vast improvement in both over the past couple of days - the pain has also subsided a little although I continue to take my daily dose of codeine. Today was also the first time in a few days I have been able to contemplate walking along the ward corridor for some gentle exercise.
Over the past couple of days the menu on the ward has altered giving me fresh enthusiasm at mealtimes. When I first arrived at Birmingham I thought the menu was superb, but even the best menus start to feel repetitive when you clock up six weeks on the ward. This redesign is a much-needed boost in the fight to keep me enthused.
I said on Monday that I was optimistic of coming home for a few days this week. Clearly things didn't quite go to plan as I am still here. Let's run the same optimism again and say I hope to be home one day next week - which will be the start of my seventh week.
The magic number for my neutrophil count today was 0.3, so things are certainly heading in the right direction for an escape next week.
Thursday, August 1, 2013
Today has been another busy day with lots of medical activity.
My blood cell count continues to ping-pong between 0.1 and 0.2 - today I am back down to 0.1 after celebrating 0.2 yesterday.
At around lunchtime I was taken for an ultrasound on my spleen. A common side effect of Chronic Myeloid Leukaemia is an enlarged spleen and although mine has reduced quite a bit over the weeks, the doctors want to make sure it returns to normal.
Soon after returning from this I was visited by a specialist wound nurse who wanted to check the skin biopsy site on my back. The medical term for the rare condition causing pain and inflammation around my wound is pyoderma gangrenosum - a form of skin ulcer often associated with certain blood disorders and surgical procedures.
The afternoon was then just a mass of drips with both Hickman Lines continually on the go and two automatic drip pumps bleeping at random intervals. My intake today was the usual anti fungal treatment, many different antibiotics and potassium.
We are six weeks into my daily diary and the Burton Mail's campaign and I continue to receive messages of praise and encouragement. It pleases me when people realise that this isn't just a campaign about me - it is a campaign to help every sufferer of leukaemia, whether they have CML like myself, AML, CLL, ALL or even the rare 'hairy cell' leukaemia. (I bet you didn't realise until now quite how many disguises 'leukaemia' has - each having completely different symptoms and requiring different treatments).
I am just the focal point of the campaign because through Stephen, I have strong links to the media and I am willing to share details about my route to recovery if it encourages more blood and bone marrow donors, and if it helps to raise awareness of the condition while hopefully helping the dedicated leukaemia charities such as Cure Leukaemia and the Anthony Nolan Trust raise much-needed funds.
Wednesday, July 31, 2013
What links Birmingham to Bristol? Yes there is the M5 but my blood is now also linking top specialists at these two centres of excellence.
Readers will be aware that it is fairly common for me to need at least two and sometimes three bags of blood a day. You would expect with this much new blood being pumped into my system that my daily blood tests would show big improvements.
However, it is suspected that my body isn't a fan of this new blood and often starts destroying it almost as soon as it is administered - on the plus side, today's results did show an improved haemoglobin level and my magic number today for my cell count is 0.2.
While the medical experts take a closer look at my blood, I have spent my day having the usual antibiotic and anti-fungal drips as well as the additional extras of a bag of potassium and that new chewable calcium tablet.
Meanwhile, the nurses took a closer look at the skin biopsy wound on my back to make sure it was clean and healing to plan. My form of leukaemia can spread to the skin and clearly this has been a concern of the specialists - thankfully, mine is just a nasty infection rather than anything cancerous.
Despite the weather being awful in Birmingham again today, it would have been nice to have been allowed out of the ward as the hospital hosts a monthly farmers' market in its grounds. If you haven't visited the Queen Elizabeth Hospital in Birmingham, you will be amazed at the size and scale of the site - it's the only hospital I know with a permanent fruit and veg stall by the main entrance and its own WH Smith and Costa Coffee - not that I have had any opportunity to visit them in the past 38 days.
Tuesday, July 30, 2013
I was desperately hoping that I would be home by today as it's my dad's birthday.
But instead of the usual cards, cake and presents, the celebrations have been put on hold until I am allowed home for a few days.
My cell count is still yo-yoing and is back to 0.1 again today. I need at least two consecutive daily counts of 0.5 or above to be allowed out of the ward or home.
My daily schedule of treatment is now pretty intensive as almost every drug I take is administered intravenously through my Hickman line. This means the day and most of the night is a constant cycle of drip changes, line flushes and warning bleeps on the automated pumps.
The pain from the skin biopsy site is subsiding a little. Tomorrow it will be seven days since the procedure and so I will soon have to have the four external stitches removed. The eight dis-solvable stitches inside the wound will probably also start to disappear.
A new medication to my ritual today was the addition of a chalky strawberry-flavoured calcium capsule. I'm not sure if this was a one-off booster tablet or if this will become a regular feature.
I haven't spoken about my diminishing hair for a few days. It continues to fall out but at a much slower rate. As my hair was very thick originally, it continues to look normal but just much thinner.
This hair loss may gradually subside as the chemotherapy works its way out of my system - only to take a further battering when I repeat the chemotherapy process for stage two of my treatment. Apparently the good weather returns later in the week - hopefully just in time fir my exit from the ward.
Monday, July 29, 2013
Today marks the start of my sixth week at the Queen Elizabeth Hospital in Birmingham, and despite my health taking on a yo-yo effect over the past couple of days, I now feel I am on the upward bounce rather than heading downwards.
Since my new antibiotics have been switched to intravenous rather than tablet form, I haven't experienced the awful nausea I suffered yesterday and my temperature is now well under control.
I am back on food and drink after being nil by mouth overnight following my sickness bout yesterday.
The scientists in the lab have also worked their magic and have discovered exactly what is causing the infection around my skin biopsy site. As is usually the case with my conditions, this too is an extremely rare bacteria known by the name serratia.
My treatment continued late into the night with yet more antibiotics and a few bags of blood.
I continue to be touched by the words of encouragement and support, and my latest round of appreciation goes to the team at Brownz Hair Salon in Horninglow who have offered their assistance with any future fund-raising events.
My diary is as much about helping others with leukaemia as helping myself, and if we can pull off a fund-raiser later in the year for a dedicated leukaemia charity such as Cure Leukaemia, then we accomplish that goal.
Sunday, July 28, 2013
I'M a little bit like a yo-yo as one day my health is good and then the next it takes a tumble.
The same can be said for my cell counts, they are rising, but again they are taking on a yo-yo formula with my counts over the past 24 hours bouncing between 0.2 and 0.1.
The sore on my back is getting worse with now a red inflamed area stretching beyond the realms of the dressing.
The doctors prescribed me two more antibiotics to help combat this infection (taking my daily antibiotic tally up to five) and it was one of these which caused the yo-yoing of my health today.
Less than an hour after taking this new tablet I felt nauseous and was finally sick.
I am constantly impressed by the staff and doctors on my ward and today was no exception - within minutes I had two doctors and a team of nurses by my bed. Nothing is left to chance and the misguided belief that doctors only work Monday to Friday is certainly not the case in this ward.
New drugs were immediately ordered (intravenous this time rather than tablet form) and I was put on a nil-by-mouth regime until Monday morning. Further blood tests were taken and I was given a dose of anti-sickness medication through my Hickman Line.
I soon recovered from my nausea and then had the frustration of not being allowed anything to eat or drink.
The celebration that me cell count has started to rise to short-lived as something else comes along to set me back a little. But I'm determined and by tomorrow I will have yo-yoed forward again. To aid my recovery I was also given two bags of platelets and a drip of tranexamic acid which is used to help clot the blood.
Saturday, July 27, 2013
Yesterday was a Champagne celebration while today is back to reality.
We were warned by the doctors yesterday that my neutrophil count was susceptible to going down as well as rising and therefore, my count today is back to zero. At least it stayed at 0.1 for a few hours proving that it can be done.
Leaving the figures aside, the most important aspect is the bone marrow sample which is being monitored as it sits on a Petri dish in the lab. What the scientists are searching for is evidence of remaining bad cells which have escaped the chemotherapy - thankfully, no bad cells have been found.
I have been extremely tired today - I think it is the culmination of weeks without proper sleep, a few nights of feverish temperatures and a build-up of worry and anxiety. Not forgetting the ongoing pain caused from the skin biopsy. The codeine doesn't appear to be making a difference so I may have to opt for something stronger. I am trying to avoid the likes of morphine for as long as possible in the hope that the pain should subside on its own once the wound begins to heal.
Until this happens, my back feels like it is being branded with a red hot poker continuously making it uncomfortable to sit, lie, walk or stand.
My blood levels need a boost and so I needed a bag of platelets and two bags of blood as well as my staple diet of anti-fungal treatments, antibiotics and a bag or two of normal saline.
Friday, July 26, 2013
Day 33 in hospital and it's time to pop the champagne corks.
For the past few days I have been working myself into a frenzy with worry.
Readers of my diary will know that on Wednesday, I was sent for a fresh bone marrow biopsy. What readers didn't know is that the results were likely to be one of three scenarios:
Scenario one would indicate that the chemotherapy had worked as hoped but my body was just taking a while to recover. Scenario two would indicate that the chemotherapy had killed everything and a bone marrow transplant would be more urgent. And the third scenario would require the doctors to sit down with me to 'discuss the way forward'.
Clearly scenario one is the most desirable, scenario two is acceptable but not ideal, and the third scenario doesn't warrant discussion.
You can probably guess with the popping of Champagne corks that I fall into the first and most desirable scenario. My neutrophil count (a type of white cell) is now 0.1. After weeks of hitting zero every time, that one decimal point is equal to six lottery numbers. Furthermore, the bone marrow test failed to detect any remaining bad cells but the doctors will keep an eye on it as it is grown in Petri dish the lab.
This good news puts my other bad news in the shade - but last night I had the worst night imaginable. I was practically cooking with a temperature of 39.4 and a pulse of 140bpm.
The pain from the skin biopsy which needed 12 stitches was excruciating and my blood pressure and temperature results were so dire, the intensive care nurses were buzzed to give a second opinion.
It's suspected that this skin biopsy site may be infected leading to my high pulse and high temperature. As a result, I am now on a cocktail of antibiotic drips along with endless bags of blood - three today. Not forgetting pain relief, anti-fungal drips and cell boosting drugs.
Thursday, July 25, 2013
Another day of anxiety as I wait for the results of yesterday's bone marrow biopsy.
This anxiety is further compounded today as I wait for news on my dad who is undergoing heart tests at the Queen's Hospital in Burton.
Today was unique in that Stephen was my only visitor and he arrived earlier than normal as he tested the journey on the train to alleviate Birmingham's many road and tunnel closures.
It was nice to spend six or more hours together even if it was just on the ward.
My anxiety soon turned to pain and agony as the skin biopsy site from yesterday fired into life.
The pain was horrendous and after paracetamols failed to make any mark whatsoever, I was put on codeine tablets.
My temperature also took on an upward spiral of 38.5 rising to 39 degrees by 10.30pm and 39.4 in the night. My blood pressure and pulse also climbed but these thankfully stabilised. My pulse at one stage was a throbbing 126bpm.
Alongside a bag of platelets, two bags of potassium and the anti-fungal drip, I also went back onto some antibiotics which we stopped a few days ago - it is hoped these will sort out my sudden fever.
My haemoglobin levels were better than usual today and so the two bags of blood I was allocated are on hold until tomorrow. Pain coupled with endless worry has left me drained today.
Final thanks again go to the fellow Burtonian who visited me last week as today they posted a nice card to the ward.
Wednesday, July 24, 2013
I was extremely worried about what was in store for me today and so I'm glad it is behind me now. A constant feeling of nervousness is not pleasant and so now I am able to calm down and relax - a little.
The day started with two bags of platelets and the cell-boosting drip ready for the multiple procedures I was going to have to endue.
After a morning of anxiety I was collected by a porter around lunchtime to go for my biopsy.
It was decided that the biopsy wouldn't be taken from the rash on my feet but instead from the swelling around my last bone marrow test site, as this swelling is suspected to be caused by the same fungus/ bacteria which is responsible for the foot rash.
Thankfully I didn't feel too much discomfort despite needing eight internal dis-solvable stitches and four normal stitches. There's little to see now of my 'battle scar' just a small dressing until the stitches are removed next week.
I didn't return to the ward until about 3.15pm where my visitors were waiting patiently for my return. I hadn't been back more than 10 minutes when the ward doctor came to do a fresh bone marrow biopsy.
This went extremely smoothly and was pain-free apart from a tingling sensation in my legs. Today, the doctor only needed to take a sample of bone marrow fluid rather than having to take a tissue sample.
So with the biopsy on my right hand side and the bone marrow test on my left hand side, I spent most of the day resting on the bed - having the usual anti-fungal and potassium drips.
Tuesday, July 23, 2013
I didn't sleep particularly well due to the general hustle and bustle of the ward coupled with the horrendous thunder storms and the fact that I had to have a potassium drip through the night.
Tomorrow looks as if it is going to be the day from hell. Not only do I have a skin biopsy on my foot to endure, the doctor also told me this morning that they want to take another bone marrow sample to see what's happening with my cells.
Bone marrow biopsies are very uncomfortable and I found my last one particularly painful even after a local anaesthetic.
For those of you keen to learn what this procedure involves, it is basically two needles in your pelvic bone. One needle pierces the bone and extracts bone marrow fluid while the second needle is twisted so that a sample of tissue can be taken - a bit like using one of those coring tools on an apple.
Today I've had a fairly busy day of treatments with a bag of platelets and two bags of blood along with my usual anti-fungal drip. I'm keeping active by walking up and down the ward corridor - mostly pushing along a drip stand and pump which my visitors jokingly refer to as 'my friend'.
Monday, July 22, 2013
Today marked the start of my fifth week in Birmingham and although I long for some good news on my cells, I am going to have to wait a little longer.
I started a new drip last night which is designed to kick-start my cells following the Flag/Ida cocktail of chemotherapy drugs - this chemical mixture must have really knocked my cells for six.
The good news is that the doctors hope my cells should have grown enough to allow me off the ward by the weekend or maybe at the start of the following week - either way, it means I have at least another five days in the ward.
It looks as though I am going to have to have a skin biopsy taken on Wednesday from the rash on my feet. Although the rash has nearly cleared, the doctors still want to take a few slithers of skin to see what it is. Apparently the injection given to numb the area before they take their samples can be quite painful so I'm not looking forward to Wednesday.
I haven't been given a time, so I cannot sit watching the clock. I only get to find out its imminent when a porter arrives with a wheelchair.
As for my other treatments, I have been on my usual potassium and anti fungal drips along with my antibiotics.
Sunday, July 21, 2013
Thankfully my thirst for blood has subsided and today's medication has just been the usual anti-fungal drip, antibiotics, potassium and a single bag of platelets.
My temperature is now also stable at 37.5 which is a vast improvement on events earlier in the week.
Boredom and frustration continue to be the largest obstacles I face, as I hope each day will bring good news about my cell count so that I can venture out of the ward.
Just the hope that one day I can make a trip to the hospital shop gives me the same levels of anticipation and excitement I would normally get when preparing to go on holiday.
My visitors are also now having to endure their own daily set of problems as the closure of Birmingham's A38 tunnel network means lengthy diversion routes and extended journey times.
I always hoped that I would be home before the start of these roadworks to avoid this added daily hassle.
Saturday, July 20, 2013
Blood is the subject for today as I appear to be getting through more of it than Dracula.
Last night I got through two bags and by 9am I was on my third bag with a fourth and even fifth due later in the day. To all those people who have taken the time to give blood since the launch of the Burton Mail's 'Take Five Minutes' campaign, thank you. I am certainly getting through my fair share of A Positive bags.
Today is my 27th day at Birmingham's Queen Elizabeth Hospital, which means that come Monday, I will be entering my fifth week on the ward.
Stephen will have soon clocked up more than 2,000 miles making the daily commute to visit and we will have spent more than £100 on television cards for my bedside unit.
The publicity is working as my first head teacher sent me a nice 'thinking of you' card. She knew I had leukaemia but assumed I was managing the condition at home with tablets. It was the Sunday Express article last weekend which gave her a shock with regards to my current situation.
Stephen's dad also received some phone calls this week from people who had seen various bits of coverage - there's apparently some coverage in some of the free Derby papers this week.
As for my health, my temperature is stable, I'm still on the antibiotics and the anti fungal drip and my hair continues to leave a trail everywhere I go as it falls out by the handful.
Friday, July 19, 2013
Thankfully my temperature is now under control - this morning it was 36.4 compared to yesterday's 38.8. It did creep up slightly to 37.8 but overall everything is running smoother.
Stephen spent part of visiting with one of those sticky clothes rollers filling sheet after sheet with discarded strands of hair. It is falling out at a regular rate but still there is little evidence to the outside world that I am losing it by the handful daily.
Both of my Hickman lines were infusing at the same time today as I had platelets followed by potassium and anti-fungal infusing together.
The evening then gradually got busier as I had to have two bags of blood through the night - finishing at 5am Saturday.
Thursday, July 18, 2013
It's been a hot one today - I'm not talking about the weather outside you are all enjoying but my body temperature.
I knew I was in for a rocky day when my temperature check in the night spiked to 38.2, but some paracetamols at 6am helped to settle things temporarily.
Unfortunately, by lunchtime my temperature had rocketed, it was now 38.8. Normal body temperature is considered to be between the 36.1 to 37.2 region so I certainly had a slight fever and I felt the worst I have felt for a few weeks.
I was hooked up to a potassium drip and given some giant soluble paracetamols followed by my normal anti-fungal drip. A day of feeling hot, tired and suffering a headache means I haven't been firing on all cylinders today. Add to that news that my cell count remains unchanged and you don't have the best of days. Hopefully, tomorrow will be better.
Wednesday, July 17, 2013
Today I realised for certain that the column I write for the Burton Mail has a loyal following and is making a difference.
While resting in the ward, a fellow Burtonian arrived clutching a card, balloon and a small Paddington Bear. This in itself is exceptionally kind and compassionate, but what made the visit really special is when the visitor told me they had also looked into becoming a donor.
It would be insensitive for me to reveal how and why my visitor had reason to be at the Queen Elizabeth Hospital today, but their kind words showed strength and encouragement. They too are very familiar with the daily commute my visitors have to endure and it's true that this commitment and dedication makes your bond stronger.
Unfortunately, my visitor arrived as Stephen was busy buying me an iced lemonade from the coffee shop - at least I can pretend I am enjoying the sunny weather even if I am cooped up in the ward.
We receive a handful of emails every day from readers of either the Burton, Ashbourne or national newspaper articles and we are eternally grateful to all the people who take time out to write with offers of support.
As for my health today, my cell count remains unchanged but my temperature and blood pressures are fine. I needed a bag of blood platelets in the afternoon to give my levels a helping hand along with my usual anti-fungal drip and antibiotics.
To prevent my legs and feet swelling up from a lack of movement and exercise, I now do a couple of tours of the ward corridor each day. It's good to have a change of scenery and I even get the odd wave from fellow patients.
Tuesday, July 16, 2013
Another sunny day and another day where the only glimpse of this fine weather I get is through the ward window.
My white cell counts are still low meaning I am still confined to the ward for the time being.
Boredom is the hardest obstacle to overcome in hospital - although I am equipped with a television, magazines, newspapers, electronic games and constant internet access for my iPad, I struggle to maintain interest and long for a change of scenery.
I still needed a potassium tablet in the morning but I should soon be able to stop this medication.
My afternoon medication involved my usual anti-fungal drip and a bag of blood. I have now stopped taking an anti-sickness tablet which I have been using since my first diagnosis back in April.
Monday, July 15, 2013
As my hair continues to shed by the handful, there is now no denying that I am losing my locks.
But as I have a plentiful supply, it is still going to be at least another week before the results are noticeable to the outside world.
My blood cell count hasn't increased since yesterday and so I'm no closer to being allowed out in the sun - but at least the doctors are pleased with my progress overall.
The morning was fairly quiet and so It gave me time to sort out bits and pieces and have a leisurely shower without having the need to rush for medicines,
I started my anti-fungal drip after lunch and this was followed by a bag of platelets. Both of these made me very tired, but on the plus side, the fungal drip and cream has worked wonders on the rash on my feet.
My temperature and pulse were slightly high when tested at 6pm but this is probably down to the drug and blood infusions.
I also received good news late into the evening when I was told I can probably stop taking the potassium supplements from tomorrow as those levels are now good.
Sunday, July 14, 2013
It's taken a while, but I am now fairly confident that my hair is starting to fall out.
It's not falling out by the hand full, but loose strands of my long locks are starting to depart at fairly frequent intervals. I may be lucky and it may just gradually start to thin, or it may fall out altogether - either way, I have wigs, a bandanna and hats at the ready.
Today started as usual with my 6am wake-up call followed by the daily doctors' visits. My white cell count is now 0.2 so my body is gradually recovering from the chemotherapy and the counts are rising which is good news for me soon being allowed to venture out of the ward.
Saturday, July 13, 2013
Whereas yesterday started busy, today looked as though it would end busy.
After the usual 6am blood tests and observations it wasn't long before the doctors arrived.
My rash is starting to clear and my temperature is now staying at normal levels. I am still waiting for my blood cells to rise so that I can venture out. Anywhere would be nice, even the main hospital foyer would be an adventure after 20 days in the same ward.
To keep active and to give me a little exercise I have started to walk up and down the ward corridor.
After lunch I was given my daily drip of anti-fungal along with antibiotics.
As my blood counts need a little boost, I ended the day with two bags of blood.
Friday, July 12, 2013
The day started busy and remained busy for most of the morning.
Almost as soon as the 6am blood test was over, I was connected to my first bag of the day of A Positive blood and given a dose of antibiotics.
As soon as breakfast was over, I was given a second blood test before it was time for the doctors' visit. Progress is good but I am still neutropenic with zero white cells meaning that I am going to be a resident at the Queen's Hospital in Birmingham for a little while yet.
The doctors explained how I can expect to be on the fungal drip through my Hickman Line for maybe another seven days as this deals with a nodule discovered on my lung and the rash on my feet.
By 10am I was on my second bag of blood and my feet had been creamed with the new ointment and bandaged.
Just after lunch I was given more antibiotics and connected to my second fungal drip of the day.
Stephen and my father requested a visit with the doctor in charge of my care on the ward and they were brought up to speed with progress and treatment plans.
The doctor explained that as soon as my cell counts start to rise, I will be allowed home for periods of time before returning for my second round of chemotherapy which is similar in duration to the first.
It is then a waiting game again for my cells to rebuild for a second time.
Once a bone marrow match is found - they are still looking - I will return for a short but intensive week of chemotherapy to ensure I am completely clear of all bad cells before the transplant begins.
As my potassium levels are quite low, I am having to take large dis-solvable tablets - believe me, they taste disgusting.
No sooner had I finished tea before it was time to have more antibiotics, more cream and bandages on my ankles and the usual temperature and blood pressure checks - 37.5 degrees today which is nice to hear.
Thursday, July 11, 2013
The usual 6am blood tests and antibiotic injections went to plan and I managed to grab another hour or so of sleep waking again at 7.30am for breakfast.
Four doctors were on ward rounds today and they revealed that my white blood cells still haven't started to regrow following the chemotherapy. I need a healthy level of white cells before they will allow me off the ward or home for a few days.
They mentioned that I appear to need quite a lot of blood - so all of you A Positive blood group donors, thank you.
Following the doctors' visit I was seen by two dermatology doctors who came to examine my feet and bring me a new brand of cream to try.
After my omelette for lunch it was time for more antibiotic infusions through my Hickman Line and another bag of that lemon-coloured anti-fungal drip. In the evening I was cross-matched ready for a blood transfusion tomorrow and was given a bag of platelets. My temperature is under control today with no unexpected spikes.
Wednesday, July 10, 2013
Following the early morning blood test and observations, I rested until my breakfast arrived at 7.30am.
Two doctors came to visit mid-morning and spoke to me about the fungal drip I have been having and confirmed that this would clear up the rash on my feet and deal with a small nodule on my lungs illustrated at Monday's CT scan.
I had my first blood transfusion of the day at around 11am followed by a chat with the nurse about my general health and well-being.
I'm sure the mornings are getting longer as the minutes feel like hours as I wait for lunch and then visiting time.
With lunchtime over we started on the antibiotic syringes pumped into my Hickman Line followed by my first lemon-coloured anti-fungal drip of the day.
A few more antibiotic syringes and my usual round of tablets finished off the day.
Tuesday, July 9, 2013
As usual, the morning started with blood being taken for testing at 6am and an antibiotic infusion through my Hickman Line.
I was then visited by two doctors who said that my haemoglobin levels were low and that I may need to have blood transfusions at some point throughout the day.
The specialist dermatologist visited to reassess the rash on my feet and he decided that I should receive a fungal drip through my Hickman Line and a new tube of cream. One of the pharmacy team came to chat to me about the new cream which is on order - I think it must be super-strength,
A nurse also took swabs of my feet and the swelling on my back.
By the middle of the afternoon I was on an antibiotic drip and later I was placed on the fungal drip - a lemon-coloured liquid which would infuse for three-and-a-half hours.
My temperature spiked at 6.30pm to 38.1 degrees but a subsequent retest was more promising at 37.9. The new fungal drip was suspected as being the cause of the spike.
A couple more blood culture tests were taken before I had more antibiotics through the second of my Hickman Line tubes while the fungal drip continued. The evening ended with a bag of blood and more antibiotics.
I'm hoping the weather's still hot by the time I am allowed home for a few days.
Monday, July 8, 2013
The day started with a visit from a team of doctors keen to investigate the rash on my feet and a swelling which has developed on my back near to the area where I had my last bone marrow sample taken. Over the next few hours I received two lots of antibiotics through my Hickman Line.
A nurse came later in the day to take swabs of my feet and in the middle of the afternoon, I was sent for a CT scan after my temperature spiked to its highest ever - 38.2 degrees.
The evening involved a bag of platelets and more antibiotics but thankfully my temperature fell to 37.4 degrees.
A doctor from the dermatology ward came in the evening to examine my feet. I should hear more tomorrow.
Sunday, July 7, 2013
A doctor concerned about the rash on my feet tries to take some skin flakes to test. Unfortunately, he couldn't get enough skin to sample so we stick to the cream and I have two lots of antibiotics. My temperature again spikes to 38 degrees but nobody knows why. I am visited by the doctor at 11pm who wants to find out the reason for the temperature rise. Four more blood culture tests are taken - these should hopefully some answers but they take five days to cultivate in the lab. The doctor tells me I am 'doing well' which is good to hear.
Saturday, July 6, 2013
The weather looks hot outside and as I am expecting more visitors than usual today, I enquire about venturing out of the ward.
As I am still neutropenic the risk is too great to venture out of the ward and so the only sun I see today is that shining through my sixth floor window.
I am given two bags of blood and a bag of platelets as well as my usual antibiotics.
Two culture tests are also taken to check for any bacteria in my blood which isn't catered for by my current antibiotics.
Thankfully, my head itching has started to subside and I haven't noticed any signs of hair loss yet.
Friday, July 5, 2013
I am given a drip of platelets to help increase my levels. I am no longer having to take blood thinning injections, instead I am taking blood thickeners.
Platelets are a strange substance, it looks like a thick orange paste but strangely it still manages to pass through the drip with ease. To help control my temperature and to fight infection as I am still neutropenic, I am given antibiotics.
A rash has developed on my feet and so I am given some cream to help take away the inflammation and the itch.
Thursday, July 4, 2013
As my temperature keeps fluctuating I am given more antibiotics through the Hickman Line. A quieter day today allows me to rest.
Wednesday, July 3, 2013
I am sent for an X-ray to check my lungs are fine as my high temperature could be a sign of water building up. Thankfully, everything is clear.
Today, Stephen and I meet a lady who specialises in wigs for cancer patients. Armed with two mirrors and a suitcase full of headpieces we spend the next hour going through various styles, colours and lengths. The quality of the products is superb and we opt for a design not too dissimilar from that which I normally have following a trip to the hairdressers. My temperature today is down to 37.8 degrees.
It's probably the first sign of my hair being killed off by the chemotherapy as today my head has been itching me to distraction.
Tuesday, July 2, 2013
I had been warned that one of the effects following chemotherapy is a temperature spike and today that happened. Hitting 38 degrees on the thermometer, I am given antibiotics through my Hickman Line.
Blood tests also highlight some levels need to improve and so I am given two bags of blood. I didn't know my blood group until now, I'm A Positive.
I am now officially neutropenic which means my white cells - the ones which help fight bacteria - are down to zero meaning I am now very prone to infection.
Monday, July 1, 2013
Life returns to some normality today as I am clear of the bleeping drip machine. I'm hoping to catch up on some rest today.
Sunday, June 30, 2013
The day I have been looking forward to, the final day of my chemotherapy.
Again I am having all three drugs interspersed with bags of saline.
With my body now pumped full of chemicals, it's now a waiting game for the drugs to kick-in. Thankfully I have been eating and drinking as normal with my only side-effect being lack of sleep.
Saturday, June 29, 2013
The timetable for today is the same again with three drips of chemotherapy drugs interspersed with bags of ordinary saline.
Side-effects have been minimal so far, the biggest drawback is when the automatic drip machine starts bleeping at 3am in the morning to signal the end of another bag.
Friday, June 28, 2013
The intensity of the chemotherapy increases today as we introduce a third drug to the mix - Idarubicin. This fast-running 10-minute drip is bright orange and is the only one which lists discoloured urine as a possible side effect. The side effects for the Cytarabine and Fludarabine include tiredness, nausea, fever, taste changes, headaches, confusion a sore mouth and diarrhoea. Thankfully I have escaped all of these so far. Not forgetting hair loss which usually starts two to three weeks after treatment.
Thursday, June 27, 2013
My chemotherapy today follows exactly the same timetable as yesterday. Again I haven't suffered any major side-effects yet, I am just having to drink loads of water and take eye drops to prevent my eyes drying out through the chemotherapy. Alongside the chemotherapy, I am still having daily stomach injections for my pulmonary embolism.
Wednesday, June 26, 2013
Before my chemotherapy could get under-way I had to go for an echo cardiogram - a heart test to make sure my body was strong enough to handle the treatment.
I had already been given lots of literature from the nurses about the Flag/Ida chemotherapy course I was about to start.
The drugs are to be administered through the Hickman Line which rules out the need for a cannula and injections. The Flag/Ida course follows a timetable and so I know what drugs I will be having, how long the process will take and how much of each drug I will receive.
The intensity of the chemotherapy is set to increase as the week progresses but we start off nice and easy with a four-hour bag of normal saline followed by 30 minutes of the drug Fludarabine. Then follows another three-and-a-half hour bag of saline followed by four hours of the drug Cytarabine.
The worst part of the treatment so far is the timings, as I am on a drip for 12 hours a day, it's inevitable that the bags run out and need changing just as I fall to sleep.
Tuesday, June 25, 2013
Today I was moved out of my private side room to the main ward - a ward with just four beds and a window overlooking the unique shape of the Queen Elizabeth Hospital which is built as a series of three figure of eights.
I was taken to theatre to have my Hickman Line inserted. For this I had to be sedated but I could still feel every pull and tug as a plastic pipe was threaded from my rib cage under the skin and is then connected to a vein in my neck.
The blood clots on my lungs which I am also being treated for mean that I take blood thinning agents. To prevent uncontrollable bleeding during the procedure I am given a drip of platelets to help thicken and clot my blood.
As I have never had an operation before, this was a completely new experience for me. The entire process was quite quick and easy and completed within 20 minutes.
Monday, June 24, 2013 – Admitted to hospital
Following my appointment with Professor Craddock last Wednesday, I was told to arrive today with my overnight bag packed. At my appointment today, Professor Craddock told me that the results from the bone marrow test showed I was in blast crisis phase and so I was admitted to ward 625.
I was assigned to a private room and was given a tour of the ward and visited by the doctor. Tests were taken for MRSA and HIV.