Being treated as an outpatient and finishing the intense treatment (Week 30-43)

Dear Reader

Welcome to my sixth blog post.  The last few months have been busy: I’ve been devoting all my time to finishing the fourth phase of intense treatment (Delayed Intensification) which has meant that I have been fairly poor at keeping in touch with people. Before I delve into the murky depths of describing chemotherapy and illness, I’d like to mention my current status.  It’s 4pm on the 11th of July: the sun is shining and I’m getting mentally ready for the England vs Croatia semi-final of the World Cup.  I’ve enjoyed a restful past week and finally feel like the tide is turning, bringing with it a wave of better health and an intimation of normal life.

(Having started this blog entry on the 11th,  I have now picked it up again on the 15th.  With my dad being English, I too support England — much to the dismay of my Scottish friends — and I have to say, I am pretty gutted with the outcome of the England Croatia semi-final.  Never mind though, there are more important subjects to discuss!!…)

Back to the main topic … Delayed Intensification.  Reflecting on this cycle as a whole, I can say that it was probably the easiest of the four cycles so far.  Hmm, ‘easiest’ probably isn’t the right word.  ‘Least difficult’ is no doubt a better description because this time was far from easy.  Halfway through delayed intensification I was placed on ‘chemo-hold’.  It was exasperating — all I wanted to do was finish my chemotherapy, and be done with it.  Apart from delaying your finish date, these chemo-holds can be cruel in other ways.  They usually last long enough to allow you to start properly recuperating, but just as you cross the metaphorical line of feeling better, it’s time for you to start again.  This see-sawing pattern to my convalescence was very tiresome.

It wasn’t all bad though.  During this period while slathered in Factor 70 (because chemo makes your skin incredibly sun-sensitive), I was able to enjoy the glorious hot weather and spent hours reading outside.  I’ve read some interesting books including ‘My Year Off’, in which writer Robert McCrum details suffering a shocking stroke at the tender age (for stroke victims) of 42.  At the time (1996), he saw a gap in the literature of suffering and pain, realising that there wasn’t much in the way of describing the dramatic impact of an ailment like this on the younger generation.  Despite McCrum being double my age and enduring a totally different disease, I was able to draw many parallels between our situations.  His struggle of spending days upon days in hospital stuck in bed bored and in pain was not to dissimilar to struggles I faced. He captured the helplessness that you feel when in the vice-like grip of severe disease.  I thoroughly enjoyed his writing style and would recommend it to anyone interested in understanding what it is like to suffer illness while trying to keep your mental health and spirit intact.

As the chemo-hold continued, so did the transfusions.  Having poor blood levels meant continuous red cell/platelet transfusions. It’s hard to fathom how many I’ve had, but if I had to guess, I would say it’s somewhere in the region of 90 with an average of 10 per month over 9 months.

By 24th May I was ready to start the final straight.  Plain sailing from here right??  I’m afraid not.  By the 28th, my temperature had risen and in familiar fashion, I packed my bags and readied myself for another inpatient stay.  With a racing heart, a temperature of 39 and a hefty bout of nausea I wasn’t exactly in the best of spirits.  Thankfully my Doc was happy to power through and keep the chemotherapy coming.  After a tough few days, I was out and much to the dismay of my parents, I was straight off to Wagamama to enjoy my favourite noodles and crispy chilli squid because it is important to enjoy life even if there is a small risk involved. If this experience has taught me anything, it’s that you must look after your mental health as well as your physical health.  There’s no point curing your body if you come out with so much frustration and emotional baggage that you’re unable to function.

The next 10 days were better.  I still spent most days going back and forth to hospital but I was recovering and gaining some strength.  I spent a few days accompanying my dad around Craigilaw.  With my final bag of chemotherapy scheduled for the 15th June, things were starting to look up.

Then it all came crashing down.

Sunday 10th June started off fantastically — I watched Scotland beat England at cricket in a one day international at the Grange.  What an achievement!  By the end, though, I had started to feel unwell.  After getting home I took my temperature — it was almost 39!  I was a bit stunned, and really rather annoyed.  I couldn’t even enjoy a day at the cricket without it being disrupted by this flipping disease.  It’s hard to explain how terrible these next two weeks were but yeah, they were pretty bad.  After two days of being hooked up 24/7 to fluids and IV antibiotics, my blood cultures came back positive for E-coli. Agggghhhhhhh!  Not only did I feel terrible, but E-coli is a dangerous bacteria, especially when it reaches your blood.  This would require a long course of treatment and a cocktail of drugs.

I lay in my hospital bed day after day.

Time passed so slowly.

On Friday of that week, six days after admission, they finally decided I was well enough to go home.  First though I’d have to take my final bag of chemotherapy — a big moment!  After receiving this, taking the obligatory photos and handing the nurses a heartfelt letter of thanks, it was finally time to go home and recover.

Can you guess what happened?

After a restless night I woke up, picked up my thermometer and in true Han Solo fashion had a ‘bad feeling about this’.  After taking my temperature, my nightmare was realised as yet again my temperature rose above the 38 degree threshhold.  I joke about it now but at the time I was somewhere between fuming and gutted.

And so I returned to the Teenage Cancer Trust unit at the Western. Everyone watched me with the same sorrowful, empathetic look.  God knows I didn’t deserve this.  But what teenager or child ever deserves serious illness? Reconciling the unfairness of this situation continued to be one of my main challenges.

After loads of testing including the whole array of blood and urine samples, multiple injections, cannulas, oral and IV medications, I was physically in an absolute state.  My PICC line had to be removed because the doctors thought the infection might be coming from there. This meant bruises now tracked up my arms following the progress of IV drugs that irritated my veins. I also had bruises ballooning from the different places on my hands and wrists where the nurses tried to place cannulas but were unsuccessful. My hair was falling out again; my skin was ashen; I was losing more weight and in pain. This was a low point, but it got worse…

After two bed-bound horrific days of infection, I got the news that it was the same strain of E-coli that had showed up in my blood last week. That treatment had failed…it was back.  They were now classing it as a multi-drug resistant bacteria and were giving me a new, very powerful antibiotic to try to fight in.  I was told that this was a last-line antibiotic and, trust me, that is something you never want to hear. I asked the doctor: ‘What happens if this doesn’t work? Will I die?’

I could literally feel my life slipping away.  I was facing up to having a seriously dangerous bacteria coursing round my veins and understanding that should this latest antibiotic not work then I could be in some major trouble. To complicate matters, I was seriously struggling to pass stool.  It was causing bleeding and severe pain.  The doctor determined that this was a secondary infection so that meant another antibiotic, a cocktail of drugs was being delivered by cannulas in both arms.

To add to my worry, everyday I spent in bed tied to the IV machine was another day closer to returning to university and another day of recovery lost.  I HAD FINISHED MY CHEMOTHERAPY BUT WAS STILL IN THIS HOSPITAL FEELING TERRIBLE: WHAT WAS GOING ON, WHY WAS I STILL HERE?? AGGGGHHHHHHHH! Whenever anyone asked me how I was doing, I’d always finish in an almost comical voice saying ‘oh yeah, and my arse still hurts’ (the secondary infection was causing a lot of pain down there).

Of course, it wasn’t funny, but I was so exasperated that there was almost no other option — if I didn’t laugh, I’d cry.  And I did a lot of that.  I couldn’t help myself.  Thinking about my situation I’d just end up bursting into tears.  There wasn’t anyone I wouldn’t cry to. Family?  Check.  Doctors?  Check.  Nurse?  Check.  Psychiatrist?  You betcha.  One day the cleaner (whom I’m very fond of) came in and was buzzing around in her usual chirpy manner.  All it took was one simple question.  “How are you honey?”.  This is a question I have come to fear.  It is a question that is very difficult to answer when you are seriously ill — you either lie and mumble something about being ‘fine’ or you are open and honest about how terrible things are.  The problem with that approach is one problem follows another follows another and, before you know it, you’re 20 minutes deep into a monologue about how bad life is and bawling your eyes out in front of the cleaner.  I can imagine that was a first for her.  Credit to her though because she listened and then chatted to me until I had calmed down and definitely left me in a better state than she had found me.

This was one of the absolute lowest points of my life.  I haven’t exaggerated or embellished anything here, I just write honestly, and try to do justice to what I’ve been through.

The next week was very difficult but my health started to improve.  It was a slow process but after 4 days my high temperature had fallen away. After another 4 days I was given the ‘all clear’ to go home.  This explanation doesn’t do justice to the difficulty and frustration that comes with being connected to a machine 24/7 and never leaving my room but the consolation is that by the end, it was no longer life-threatening and this stay, at least, would come to an end.

I returned home on Monday 25th June a broken man, desperate for the better times.  Unfortunately I had to wait.  My counts were low, so I needed a growth hormone, Filgrastin, injected by my dad at home.  This made me feel nauseous and made it difficult for me to walk.  One day I managed a five minute slow stroll around the block and almost fainted from exhaustion. It also creates side effects akin to body-wide growing pains.  There comes a point when you feel like this is what life is always going to be like.  I owe my convalescence over this period to my parents for their wise words, always reassuring me that there will be an end to this torment and reminding me how close I was.

The 1st July was the day things changed.  I was becoming stronger and more capable to do things.  I started feeling that incredible feeling: normality.  I started to understand again what happiness felt like and how it feels to just sit there and be content in your own skin.  I vividly remember an emotional conversation with my father expressing my thankfulness at feeling happiness, real happiness again.

It’s currently the 20th July and my convalescence has been pretty successful over the last three weeks.  I haven’t been coming on leaps and bounds and I won’t be running a marathon anytime soon, however, I have been slowly but surely repairing and growing my strength.  I left the hospital underweight, at just 65kg. Over the past few weeks, I have made my way up to 71.5kg, a much safer weight and a platform from which I can begin exercising properly.  As my physical health improves, so does my mental: writing this blog coupled with multiple sessions with my psychiatrist have gone a long way to improving my state of mind.  Happiness is also a great medicine and strangely addictive.  I, for one, hope to continue this addiction for years to come.

I was due to return to University in three days.  Unfortunately this has become unfeasible because the fact is, I still need more time to recover.  I’m keen to return though.  I’ve got a meeting with the heads of the dental school on 9th August with a view to organising everything needed for my return.  This situation is obviously not ideal, but with my determination together with the support of my invaluable friends and family I’m sure I’ll make a really good go of it.  And in the end, that’s all you can ask for.

On Monday 23rd July I begin my next cycle, Maintenance, which entails solely chemotherapy pills and lasts around two years eight months.  I’ve had good reassurance from my Doc that these pills should be fairly inoffensive and that I will be good to move forward in my life.  Fingers crossed.

There is nothing guaranteed about the future, but I’m excited to see what it holds.  I’m also not sure where this blog goes from here.  I’ve finished my intense treatment so there may not be any need for me to continue.  It’s also about to get very busy so don’t hold your breath on me updating this!… but you never know, one day I might find myself with a spare few hours, and the inclination to write my thoughts down.

I’d like to take a moment to thank everyone for their contributions no matter how big or small, over the last 10 months.  I am truly grateful and quite honestly owe my life to you.  I’d like to thank everyone for tuning into this blog, taking time out of your day to fill in on how I’ve been doing.  Knowing so many people are interested in my recovery has made me realise how many friends I have looking out for me.  It has always given me a little giggle whenever I’ve looked at the numbers visiting the site.  So as I draw to a close on what has been a rather long entry I’d like to leave you with one quote I’ve held dear over these tumultuous last 10 months: “If you think you can, or you think you can’t, you’re probably right” Henry Ford.  If you believe in yourself and your ability to do something then in all likelihood you will succeed.

Remember folks, health is wealth: look after yourselves ❤

Signing off for now,

Andrew Tetley.

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Being treated as an outpatient (Week 20 through 30)

Dear Reader,

Welcome to my fifth blog post.  Since last updating this page, I have completed my third cycle of chemo and started my fourth cycle.  As you can imagine, it has been a tough time recently.  I’ll start by explaining my experience of the third cycle.

In short, it was really really hard.  This cycle was characterised by spending 5-7 nights in hospital every 14 days over eight weeks. During this time I was physically very unwell.  I started developing horrible mouth sores making it agony to eat, drink or even speak.  I would go days and weeks with these ulcers — almost unbearable.  During these hospital stays I was very depressed.  I’ve always been so active and full of life and thus it was very difficult having to live in one room for upwards of a week at a time.

And the minutes passed so slowly.

It was just terrible.  Over a 56 day period, I had to spend 22 nights in hospital.  It took a lot of counselling and support from close family just to get me through this mentally.

At the beginning of each 14 day cycle I would receive an intrathecal injection.  If you’re squeamish then I advise you to move to the end of the blog.  These procedures required me to sit on a bed and be bent double over a table.  The aim is to protrude my back out as far as it will go, so as to make each vertebrae as visible as possible.  The doctor then marks out the entry point on the spine.  What follows is an extremely uncomfortable ten minutes.  Local anaesthetic is placed peripherally and then placed deeper.  This is given two minutes to work.  Then comes the long needle.  It is introduced into the space between the vertebrae and is advanced until it reaches cerebral spinal fluid.  Often though, the needle can miss and ends up hitting nerves.  This sends a jolt, akin to electricity, down my leg which to be honest, is quite scary.  I’ve had procedures where the doctor missed four times before finally finding the right spot.  When this happens, it feels more like I’m part of some cruel torture chamber rather than a well thought out medical procedure.  I have to keep reminding myself that I need this treatment to save my life.  It sucks though; it really does.  And to think I’ve had to have over ten of these operations and to know that I’ve done nothing to deserve this leukaemia.  All this pain and anguish just because I got unlucky.  Don’t get me wrong, I’ve come to terms with my diagnosis and I know it’s important to remain positive and move forward, but it’s hard sometimes when I think about all I’ve been through.  The process finishes with the cerebral spinal fluid (CSF) being collected and some chemotherapy drugs are introduced into the spine heading up to my brain.  These operations never used to be part of the treatment for leukaemia patients, however people were relapsing too often in their CSF.  It is a necessary evil in the pursuit of attaining a full cure.

Image result for intrathecal methotrexate

My other main problem in this cycle was the constant nausea which led to days upon days of throwing up and feeling sick.  Never pleasant.  Couple this with the terrible back aches I would get from lying in bed too long and you can begin to see why I’m so glad this period of my life is over.  There were days where my dad would spend hours just massaging my back.  It got so bad that at one point I had to be on constant morphine from an intravenous ‘pain pump’ just to keep the pain at bay.  Being on morphine was interesting to say the least.  Some of my conversations and suggestions were just hilarious. On one occasion, at midday, I asked my mum if my friend Jack could come for dinner. ‘But he lives in Northern Ireland, Andrew,’ she said. ‘He can just catch a plane this afternoon,’ I replied thinking it made total sense. It was a nice respite from the reality of a very difficult time.

After each hospital stay, I would get to go home.  This was better, but not by much.  It took a full week of feeling nauseous, weak and sore to recover from each High Dose Methotrexate and I had four rounds. Two months in survival mode.  It’s why I cannot wait till this is all over.

But guess what?  I got through it.  Because that’s what I do.  I’m a battle hardened veteran now.  On the 18th September 2017 I was introduced to the gates of hell, and yeah I’ve had my ups and downs but I haven’t given up yet.  I know how strong I am — I now believe I can do just about anything.  Obviously, worries about the future still creep in.  In several months I’m planning on going back to Glasgow University to complete my Dentistry degree whilst on daily chemotherapy pills.  Aghhh I mean does that not sound kinda crazy to you?!  I finish my intense treatment on the 11th June and I’m hoping to be back up in Glasgow come the 23rd July!  A month and a half to recover and get back to it is kinda nutty when you think about it.  But I believe it is do-able.  Anything is do-able if you have the right mindset. The incredible people surrounding me have helped so much.  Whether it’s my rock solid family or my huge group of loyal friends in Edinburgh/ Glasgow or the supportive healthcare workers that I meet almost every day during my treatment, I truly believe my comeback will be founded on your incredible work, so no matter how big or small your contribution I’d like to take this moment to say thank you.

So like I mentioned above, I have finished the gruelling third cycle and made it onto the fourth and final stage of ‘intense’ chemo called ‘Delayed Intensification’.  I’m almost three weeks in and so far this has been the least difficult course so far — long may it last.  I’ve had almost no nausea, I’ve been eating some and I’ve been able to go out to  the movies with my friends  (btw  ‘Avengers Infinity War’ was amazing but the ending had me a bit like WHATTTTTT??? haha.)  I’ve even been able to drag myself along to cricket training! I’m building up my strength little by little and to be honest I’m feeling as positive now as I have been since diagnosis.  I had a brilliant chat with the head of the dental school where he promised lots of support to get me back on my feet.  This means the world to me.  He’s even offered extra manual dexterity classes so I can feel as confident as ever when dealing with patients again.

I know, however, that there are still challenging times ahead.  In the coming weeks I begin some really tough chemo drugs — Cytarabine and Cyclophosphamide … and we have a difficult history together. In December, they floored me for weeks. But, the way I think about it is this: I’ve beaten them before and this is their final attempt to have vengeance.  I’m a strong lad and know I’ve got what it takes to come through this.  Couple this chemo with the fact that I still have two intrathecals to endure and it is easy to see the immediate future isn’t all plain sailing. But, it’s true — I can do this! As I write this on 3rd May I’m sizing up the fact that my last chemo of the intense treatment is the 4th June!  Just over a month!  After eight long months, I’ll soon be able to get my life back!

So yeah, signing off for now people.  If you have any old memories of us doing cool or funny things together then I’d love to see them. Just fire them over on messenger, I’m sure they’ed really cheer me up.  If you have any questions about anything, I’ll be more than happy to answer them.  The future is looking brighter. Ya boy is getting there folks.

Andrew.

Being treated as an outpatient (Week 12 through 20)

Dear Reader,

Welcome to my fourth blog post.  You might want to grab a cup of tea.  This is going to take a while.  A lot has happened in the past eight weeks.  I’ve been through the good, the bad and the ugly but spoiler alert- it’s been very good recently.

I’ll start from where I left off: in the lead up to Christmas.  I was coming to the end of a grueling period of sickness and nausea, but this was beginning to fade.  However on 24th I began feeling really under the weather again. I was sluggish, tired and sick.  I had to be admitted to hospital for testing to check if I had an infection — something that would have undoubtedly meant spending Christmas in hospital.  However, ‘thankfully’ on this occasion it was just a case of severe anaemia.  After two bags of blood I was right as rain and ready to head home.

I’d like to use this time to say thank you to anyone who has ever donated blood before.  It is so so important in the treatment of people like me and without it I’m really not sure where I would be.  At any one time there is never more than a weeks supply of blood in reserve — yes only a week.  That means, should you give blood today, that same blood would be processed, packaged, matched up and given to someone by this time next week, most likely sooner.  So, rather selfishly, I’d encourage anyone reading this to find out more information about giving blood and work out whether it might be right for you — thank you.

As it turns out my family and I had a lovely Christmas filled with happiness and good health — all you can ever ask for.  The 28th was my final intravenous chemo from my 2nd cycle.  It hit me really hard.  Chemotherapy is never great at the best of times, but after 10 long weeks without a break, the toxicity had built up in my system.  The following two weeks were absolute hell.  Hardly eating, having days where I was virtually unable to get out of bed and so on. I lost 5kg in this period moving to a mere 67kg.   Standing at 6’3, you can begin to see why this was such a problem.  On the plus side, it’ll make a good comparison for when I get fit again lol.  But I managed to get through this dark period.  I was scheduled in for the all important bone marrow test — this would determine whether I could continue on my course of chemotherapy or if I needed a more dramatic intervention (stem cell transplant or new experimental therapy called CAR-T).

Before I could get this bone marrow I had to wait for blood counts to rise as I could not take on such an operation without the sufficient neutrophils and platelets.  After two weeks of waiting I was ready to have the procedure.  As explained in a previous post these are not the most comfortable of operations, however I got through it and was left with only a little scar above my hip.  The operation had been successful and the sample would be sent off to Birmingham for specific testing.  These results would take another two weeks to come back, so yes, that meant more waiting.

You might wonder what I got up to over this fairly empty time frame.  Well I began to start feeling better.  I had over a month without any chemotherapy essentially in limbo.  This was the first proper break since diagnosis and to be honest I wasn’t expecting a good period — I had imagined that I would be feeling terrible throughout the whole length of treatment so it was a great relief.

Having this time off was a mixed blessing though.  From the beginning, I had been told that the intense treatment would take seven months, with the less intense treatment taking just over two and a half years on top of that.  Every day without chemotherapy would be one more added on at the end.  Having started chemotherapy on 22nd September I was hoping 22nd April would be my ‘finish’ date for the intense phase.  With my latest delay, plus others that came before, it is looking more like the 10th June.  I was hoping to join university around the 24th July so you can see why these delays aren’t ideal.  A month and a half doesn’t seem long enough to return to where I was before diagnosis- and of course it isn’t.  A mere six weeks is not time enough to catch up on all my work, while also trying to build my body back up.  More likely than not, I’m also going to be returning to Uni fairly bald: this six weeks won’t be long enough for my hair to grow back. There’s also the small issue that throughout this period I will be recovering from a brutal cycle of chemotherapy.  Moreover I’ll still be on active treatment, just with a lowered intensity.  I think it’s going to be important for me to accept myself as I am throughout this period, because I may not be able to complete everything as quickly as I like.  There’s also a worry about what others will think and how that might affect my self confidence.  Proudly however, I can say that I have a brilliant support network of friends in both Edinburgh and Glasgow (and abroad!).  I know people are going to be there to support me and, although there are still tough times to come, I can have a positive outlook because there are going to be more good times than bad.

I know what you’re thinking: you’re saying ‘Andrew, at the beginning of this post you promised some good news, but all I hear is you complaining about your problems!’  Well wait no longer.  On the 1st February 2018 my Doctor called me up to tell me that my bone marrow sample had come back as testing negative for leukaemia.  After a long four and a half months I had finally made it. I was (and am) officially in remission!  Remission, in my case, means that my body is no longer producing cancerous cells.  You may wonder if I’m in remission, then why do I still have three years of treatment?  Well, although my body is no longer producing cancer cells, there may still be ‘rogue’ cells left throughout my body.  If I were to just finish treatment then these cells would start replicating and I would certainly relapse.  The long treatment is needed to lower this chance of relapse — remember, we are fighting for a cure here!

Had I failed this test, my treatment would have changed to something more invasive e.g. stem cell transplant or Car T cell therapy.  Being honest, with these treatments, I almost definitely would not have been ready to start university in time for 2018-2019 and thus my dentistry career would be in doubt.  As it is, I will continue on my original regime with the idea of returning still firmly possible.

The following day I had an appointment with my doctor to discuss the next stage of my care.  My treatment is being done through a trial called the UKALL 2011 trial.  It looks to compare the standard treatment of Acute Lymphoblastic Leukaemia to that of newer treatment with the hope that the newer treatment could reduce relapse rates but also increase quality of life for young cancer patients.  Some people prefer to be treated through the standard treatment, however, after reading the extensive papers on the trial I believed the newer treatment would suit me.  Moreover, taking part in the trial was an important thing for me mentally.  I’m an advocate for research because that is the only way we create better, kinder treatments and I believe that by participating in this trial, I am doing my part to help towards this goal.  After signing off the necessary papers my details were put into the computer so my path could be randomly chosen. Out of four options, I was randomised to the exact course I wanted!  Not only was I going to be treated by the newer treatment, but I had also been randomised to receive a less intense course of treatment over maintenance.

It might not seem it, but this was almost as important as the previous days results.  I had worried for a while about undergoing chemotherapy while at university.  Would I be healthy enough to treat patients?  Would I be too sick to concentrate in lectures? Would I be able to go out with my friends?  Would I be well enough to get back to sport and exercise?  I was scared. I worried that I would get back to Glasgow and find everything just too difficult.  Of the four possible treatments, three involved more intense chemotherapy during the time I was hoping to be back at university. Luckily, I was randomized to the fourth which is easier during ‘Maintenance’ meaning I will make it back to university and it will be possible for me to prosper while still completing my degree.

To put this in perspective, I’d like you to imagine an important decision being decided by a 25% chance.  Imagine applying for a job or sitting an exam or proposing to a loved one etc.  Now think about these situations being totally outwith your control. Anxiety — this is what it was like for me. (And keep in mind that I’d already lost the Leukaemia lottery being the one in 50,000 19 year olds to get it!) So I was nervous. My luck hasn’t been so great lately but on this day it fortunately came through. Thank goodness. Now I can proceed with a happy heart and a healthy mind.

I begin my next cycle tomorrow (February 6th) and truth is, I know it is going to be a tough one.  It will entail many overnight hospital stays and lots of invasive procedures along with a new and extremely toxic set of chemotherapy drugs.  At this point, I am kind of dreading it, however I know if I persevere then I will get through it.  Having been through a lot already, I know I can do it.  Below are two nice pictures of me off chemo and feeling well in January.  It was brilliant to be able to attend the Dental ball and catch up with all my friends who I haven’t seen in months. I’m looking forward to many similar occasions in the future.

Thanks for reading my 4th blog post!

Andrew.

 

 

Being treated as an outpatient: Week 3 through 9 (then 9 through 12)

Dear Reader,

Welcome to my third blog post.  Unfortunately I’m having to play catch up in terms of getting everyone up to date and it means I may not have space to write about everything that has happened over the past six weeks.  I’m hoping that in future entries I’ll be able to reflect and cover certain topics in greater detail e.g. dealing with body image etc.

Back to the story: cast your minds back to the 10th October: I wonder if you can remember anything that happened that day.  It’s difficult to come up with something if it was a fairly normal day.  Well for me it wasn’t a normal day.  For me, it was the day I was released from hospital, allowing me to sleep in my own bed for the first time in almost a month.  It was a big day — a day to remember and cherish. I recall the Doctor telling me I was allowed to go — it was exciting but also a little scary.  By allowing me to go home, the Doctor had put some of the onus on me.  I was now partially responsible for my treatment. No longer would the nurses bring me my pills or check my temperature or check in to see how I was feeling.  Instead, I was given a huge bag of pills and a thermometer and all the information I would need.  I had to check my temperature four times a day and take eighteen pills: eight at breakfast, five at lunch, four at dinner and one at bedtime.

So, when I’m not staying in hospital at night you may wonder what I do to keep myself entertained.

Well it changes from day to day depending on what is happening and how I’m feeling.  Quite honestly I still spend quite a few days in hospital. Just recently, there was a two week period where I had to go into hospital thirteen of the fourteen days.  As you can imagine, this becomes quite tiring and makes it hard to do anything but eat, rest and spend time with my family.  However, there are less busy times and it is during these times that I try to do something productive.  If you’re reading this blog you most likely have a job or go to uni or look after a family etc… and therefore your idea of productivity may be slightly different to mine (lol).  For me, productivity means going for a 45 minute walk or doing some reading or completing 1/3 a blog post or doing some easy cooking or tidying my room or meeting up with friends or going to watch my sister/cousins play sport.  If I can do any one of these activities — or god forbid, multiple! — then it has been a good day and I’ve been able to achieve something.  This sense of achievement might sound slightly crazy considering these all seem like fairly menial tasks, however in my situation, these ‘simple’ tasks suddenly become much more taxing.  There have been days (and quite a few of them) where I haven’t done any of these activities because I’m sitting in a treatment chair getting chemo at hospital or I’ve felt so sick that all I can do is lie in my bed feeling sorry for myself.

It is at this point that I must interrupt the story and apologise.  The paragraphs above were written about four weeks ago and in the meantime I have been unable to add anything at all, until now.  As I explained earlier, writing this blog requires me to be well(ish), however unfortunately this has not been the case over the past month.

After my first cycle of four weeks, a bone marrow biopsy was taken to check on my progress.  Once obtained, this biopsy is tested to check for the presence of any more leukaemia.  The first test came back negative! — and I was told the happy news that I was in ‘morphological remission’.  A second, highly specific, test called the MRD (Minimal Residual Disease) was then conducted: a test so specific that it can detect one cancerous leukaemia cell in a million healthy cells.  My biopsy came back as “MRD positive — risk” meaning that although my bone marrow had responded really well there were still a very minute number of malignant cells left in my bone marrow.  Not the perfect result but a close second: my body was responding well to the chemotherapy but I needed a stronger concoction of drugs to completely eradicate the disease.

Because of this MRD positive result, my treatment for the next cycle changed.   I went from the medium risk group to the high risk group.  I needed to explain all this because this fact is the reason for my trouble lately.  The second cycle, called Consolidation, is renowned as being a particularly intensive and harrowing cycle. The chemotherapy really ramps up in an attempt to kill the leukaemia for good.  Moving into the high risk group meant that my chemotherapy for this cycle was upped in concentration and intensity.  It turned what was an already difficult cycle into an extremely arduous one.  On this particular day, 13 December, I’m feeling better however it is no exaggeration when I say that the past month has been very very tough — the toughest of my life so far.  I can only hope those days are behind me.  With only six more days of treatment in December I’m thinking I might have some brighter days ahead!

I will try not dwell on the bad times however I feel obliged to write a little on it.  The past month I have really struggled with nausea: the horrible all encompassing feeling of death that occurs when your body is unwell.  It turned me from happy chirpy and full of life to utterly bitter and sorrowful.  With the nausea you just cannot live properly.  You end up bed-ridden, unable to eat, not wanting to talk to anyone, not having the energy to even make eye contact or watch the TV.  The only thing you want to do is sleep so the pain will go away.  Pretty dark, right?  Yeah, not nice.  In fact it’s totally horrible.  I wouldn’t wish it upon anybody.

The other main problem I’ve been having is infection.  Recently, I have had three ‘infections’ and I have had to be hospitalised for each one.  These hospital stays are not pleasant.  They entail lots of injections, constant cannulas, lots of IV fluids and antibiotics.  I’m not going to explain it all, but basically they are really unpleasant stays where I feel ill for ages and spend days constantly hooked up getting Intravenous drugs/fluid.  Having an annoying machine next to you 24/7 beeping and making noises can drive you absolutely bonkers.  I’ve struggled so much with illness and nausea that my treatment has had to be delayed five days — there was a point I was so ill that continuing chemo would have been dangerous.  Even writing and recalling this period brings shivers: I just hope I don’t experience these problems again.

Talking of running, have you guys ever heard of the Santa Dash?  It’s kinda a rhetorical question because almost everyone reading this must have seen the incredible effort that occurred at this race.  120 of my Dentistry friends grouped up and ‘ran’ the Santa dash 5k while raising money for the Teenage Cancer Trust (I use the would ‘ran’ quite liberally here lol).  They’ve raised over £7300, an absolutely incredible amount.  Thank you so much to everyone that took part or donated: you’re helping to make the lives of ill young people just like me a whole lot better <3.  I must give a special shout out to my great mate Martin Laird who put so much effort into the event and made sure it was such a brilliant success — thanks a bunch.  I was really gutted that I wasn’t able to make it up to see everyone, however unfortunately I was bedridden at the time and totally incapable of making the trip up to Glasgow.  With my growing strength and less difficult schedule ahead, I’m sure I’ll be able to see you guys very soon!

So yeah that just about wraps up this blog entry.  It’s been a tough time — there’s no denying that; but there’s also no denying that the future looks positive.  I’m excited about what is to come and I’m looking forward to being more social and more happy.  You never know, there could be some sort of normality of life on the horizon.  Guess we’ll have to wait and see…

For now, though, it’s goodbye from me and thanks for reading,

Andrew

The Beginning: being diagnosed.

Dear Reader,

Thanks for being interested in my journey: welcome to my blog.  I never thought I’d be sitting down beginning an online blog but I guess I never thought I’d be in the situation I am.  I feel like this is the best platform to write about my experiences: it’ll help me express myself and come to terms with what is going on and also help keep people up to date with how I’m getting on.

So, how did it start?  Well as some of you may know 6 weeks ago on 18th September I was diagnosed with Acute Lymphoblastic Leukaemia (ALL). Scary right? This is a cancer of the blood where a cancerous immature white blood cell (B-cell of origin) is made.  In normal circumstances this cell would be killed by the body however in my case, it was allowed to live. It began proliferating and proliferating.  When I was diagnosed I had roughly 100 billion(!!!) of these diseased cells in my body.  This was making me very sick: they were using all the nutrients available and taking over my body, quite a scary thought.  To give an idea of how bad it was: the normal range for haemoglobin (structure in a red blood cell that carries oxygen) in a man is 135-180 grams per litre.  When I was diagnosed I had a haemoglobin count of just 67, less than half of the normal range.  This was because the cancerous cells were using up all of  my body’s nutrients and out competing the other cells.

As you could imagine, it was quite a shock finding out I had cancer.  My first thought was ‘how could this have happened to me, what have I done to deserve this?’  I’ve since looked up the possible causes of ALL and they are smoking, obesity, lack of exercise and exposure to radiation.  I looked down this list and thought none of these even remotely affect me, how the f*** have I got this disease?  It turns out that sometimes people are just unlucky and although the above factors can increase your chances of getting ALL, anyone can get it at anytime.  So yeah, I was just unlucky.  Kinda sucks when you think about it. However, I want to keep this blog fairly positive.  Obviously there will be setbacks, and times when I’m down etc however there is also so much to be positive about.  My incredible friends, my caring family, the amazing Teenage Cancer Trust, the unbelievable care I get,  my impromptu gap year, my cool new hair cut… these are to name but a few.

I was diagnosed at the Beatson hospital in Glasgow, however I could also receive treatment at the Western General in Edinburgh.  It was decided that it would be best for me to stay in the Edinburgh hospital as it is a 5 minute drive from my family home.  Quite early on it was explained to me that I would have to drop out of my course because to receive chemotherapy and study at the same time would be impossible. I would like to say at this point how incredible the dental school were with the whole thing.  I spoke to the head of the school and he wished me his best and said that absolutely, there would be a space for me in the year below the following year.  He has even offered special help for me should I feel I need it.

I’d like to thank everyone for their kind messages at the time of my diagnoses — it means so much to have people reaching out to you and it definitely helped me.  There were so many incredible people supporting me at this time but I’d like to give a special mention to one of my best mates, Joshua McNabney.  He was by my side before my family had made it to Glasgow when the Doctor first told me what was going on.  He hugged me and supported me when I burst into tears at hearing the news. He was by my side as we walked through the entrance to the teenage cancer trust and he was still there at the end of day when I was ready to go to bed. A true friend. Thank you.

Thanks for reading my first blog post!

Andrew.

Starting chemotherapy: my in-patient stay

Dear Reader,

Welcome to my Second blog post.  After being diagnosed and having moved to  Edinburgh’s Western General Hospital, a treatment plan was made.  With leukemia, there is no tumor so I don’t need radiotherapy or surgery. All of my treatment is chemotherapy.  They explained to me that there would be four cycles of treatment and that the best case scenario would be to have this ‘cured’.  They technically don’t call it a cure until you have had five years of no cancer so this is a long term goal.  Once the cancer has been killed off (best case scenario seven months), I will go onto a maintenance period.  This entails having my blood tested once a week to check for relapse, taking daily chemotherapy pills along with a monthly visit to the hospital to get Intravenous chemotherapy and finally going to hospital once every three months to get an intrathecal (intraspinal) injection.  This will go on for two and a half years and I am hoping this is the period I’ll be able to get back into normal life (Uni+Sport+Social).  Taking pills and getting my blood tested has become the usual now so I’m sure it won’t get in the way too much.  If you are interested about my condition and want to read more about my treatment plan etc go to  http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-treatment-children-young-people-acute-lymphoblastic-leukaemia-lymphoma-ukall-2011#undefined .  My treatment is being done through this UKALL 2011 trial.  The first 4 cycles will hopefully take seven months and the final cycle will be two and a half years.

My first cycle was as an in-patient.   This means you stay in the hospital — you are allowed to leave for periods during the day but generally you just end up staying and spending all your time in the hospital.  The first cycle is called induction and is renowned as being quite an intense stage — they are trying to stop the production of the cancerous cells and greatly reduce the numbers.  I started chemotherapy on the 22nd of September and my first cycle finished on the 20th October: I was meant to live in hospital for almost a month!  As it turned out, I did really well with my first cycle, so much so that the Doctor released me early!  I was allowed to go home on the 10th of October and finish my first cycle as an outpatient- where you only go into hospital on the days you have treatment.  Despite doing well and getting out early there were definitely some setbacks and some difficult times.

The first two weeks were really hard.  I was still facing up to the diagnosis; the news was still pretty fresh.  One night I got quite angry and began punching pillows and bed sheets and swearing and cursing my luck, continually asking ‘why me’ ‘why me’ etc.  I haven’t cried much over the past eight weeks but that night I cried. I’ve since come to terms with my situation but looking back this release of emotion was probably needed.  Moreover I was receiving a lot of invasive chemotherapy.  For my first day I was greeted with a bone marrow biopsy and an intrathecal injection.  A bone marrow biopsy- pictured below- requires me to lay an examination bed and receive a local anesthetic to the skin directly above my hip bone (the part that protrudes from your lower back).  After 5 minutes, the doctor opens up the skin and attempts to stick a needle into your bone.  The doctor then attempts the draw up some of the bone marrow liquid.  I’ve exercised and played sport all my life.  This has lead to me creating a set of bones that are very strong.  This is a good thing in almost any situation, however not bone marrow biopsies.  The Doctor toiled and toiled trying to get a sample from me.  She had to have two attempts at it and throughout, she would explain ‘you’ve got the hardest bones of anyone I’ve ever tried to do this on’.  It’s nice to know I’ve got hard bones but let me tell you- it came at a price that day!  The doctor then had to take a sample of my spongy bone.  For this, she got out what looked like a small apple corer.  I had to brace myself against the railing as she did her best to get the sample quickly and effectively.  There was a lot of pressure and there was pain.  Pretty grim when you think about it, however I got through without too much fuss so I’m proud of that.  Next was the Intrathecal.  I’ll explain more about that later but first time round it went smoothly and it wasn’t too painful.

Image result for bone marrow biopsy

It was strange living in hospital.  It was a totally different routine to what I was used to.  One of the tough things about this first two weeks was getting used to this routine.  For example all of a sudden I had 18 pills to take a day.  This wasn’t too much of an inconvenience- the nurses helped me take them at the right time and I’ve always been good at swallowing pills.  I also had to get my temperature and blood pressure checked 6 times a day (every 4 hours).  This wasn’t too invasive though- just a thermometer in my ear and a blood pressure monitor on my arm.  It was the constant blood tests that made it difficult.  I was having to get my blood tested 4 times a day (every 6 hours).  This meant that everyday I was having to get minimum 4 injections.  I’ve always been good at receiving injections- I always just got on with it and never complained- and I continue to be like that.  However, getting 4 injections a day (and it was usually more) takes its toll especially when you have one at 00:00 and another at 06:00.  It basically meant that just before I went to sleep I’d get an injection and then at 06:00 I’d get woken up for my morning injection.  When you couple this with the fact that I was also being woken up at 02:00 to have my temp and BP checked, you can begin to see why this was quite a difficult time.  But I kept complaining to a minimum and I managed. People throughout history have been through a lot worse than being woken up at night and a few injections.

The toughest part about this 2 week period was probably the nausea.  This initial block of chemotherapy made me feel very ill.  Imagine the worst hangover you’ve had.  You were out the night before and you took it one step too far and ended up like rolling around the floor or something.  I know I’ve been there before.  Well that is how I felt for days in a row over this period.  I was pretty bedridden and could do nothing but sit there and think about making it to the next day.  It took its toll on me: I started losing weight and getting pretty skinny. The combination of not getting out of bed and only being able to stomach a little food lead to a pretty unhealthy loss of weight.  The nurses offered anti sickness drugs and I took them. They helped, however they also made me feel kinda numb.  They would reduce my nausea but they also reduced my senses.  The result was I didn’t really want to talk to anyone apart from family and I didn’t really care about what was happening around me.  I sorta just sat there feeling a bit ill and feeling a bit numb.  It was an odd time and I’m very thankful that I haven’t felt like that since (I’ve been free of nausea for about 4 weeks now).

It wasn’t all doom and gloom though.  Throughout this period I was very determined and did my best to keep a positive attitude: I know that there is light at the end of the tunnel.  This period also made me realise the incredible volume of support I have.  So many people reached out to me to wish me the best of luck in recovery and basically everyone asked if there was anything they could do to help.  It’s an amazing feeling knowing everyone is rooting for you!  I could not write this blog entry without mentioning the Teenage Cancer Trust.  Their incredible £3 million unit in the Edinburgh Western General was one of the reasons I made it through my inpatient stay.  I was allowed my own room with nice wallpaper and a TV.  This is an incredible luxury when you consider that all adults (age 26 and above) had to share a room with 3 other people! A horrible thought and I would have really struggled had I been in that situation.  Moreover the TCT unit has a lovely treatment room and a brilliant activity hub kitted out with large TV’s, football table, games consoles, kitchen area etc.  This brilliant facility meant I could spend time in somewhere other than my room, something that I really appreciated.  They also had fast wifi- something the rest of the hospital didn’t have!

So yeah, that explains a little bit about my initial stay and my treatment etc.  Obviously there’s so much more to say but I think this post is already too long lol, but if you’re interested to find out more then CancerresearchUk and Macmillan and good websites to look at and if you have any questions about my treatment etc don’t hesitate to ask.

Thanks for reading,

Andrew.

P.S. I know I’ve been telling people about this blog for a month now so I appologise that I’m only releasing it now.  Unfortunately I’ve been really busy recently with being in hospital almost every day over the past two weeks.  Hopefully now I’ll be able to stay on top of it!