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,