Chronicles of My Cancer, Part 3: Complications

complications

Time for part 3 of my time with cancer. You can find part 1 here and part 2 here.

The all-clear

At this point in my journey I’d finished my two cycles of chemo. I was given a second PET scan after the completion of my chemo to see if my body had reacted appropriately or not. Basically, if the scan came back clear, I could move straight onto two weeks of radiotherapy. If it came back with residual disease, I would have another two cycles of chemo.

I seem to remember not having to wait too long for the results of the scan. I think it might have literally been the day after. Either way, I received my results sitting on a train into London, sitting opposite my mum.

My phone rang, I answered and about 20 seconds later, I received the best news I could have been given at that point: my scan came back all clear. To be precise, the exact term the woman on the end of the phone used was that I’d had a “complete metabolic response”. As you can imagine, I thought it must mean something positive but I wasn’t totally certain of what that term meant, so I asked her to clarify.

“It means  you can go straight on to your radiotherapy. You won’t have to have chemo anymore and you won’t have to see us again.”

It was amazing. It meant that I could finally start recovering from the two months worth of constant nausea and just generally feeling awful. I was told I was to start radiotherapy a couple of days later.

The betrayal

Unfortunately, my feeling of ecstasy would be short-lived. It was a couple of days later that I got a call from the hospital again.

They wanted me to have another two cycles of chemo before I started my radio.

It literally came out of nowhere. Everything was going according to plan yet for some reason my doctors felt like exposing me to more chemo.

To say I was pissed off was an understatement. To me, my doctors had just completely gone back on their word and decided to change my treatment plan for no reason.

I relayed my thoughts to the person on the end of the phone in, well, let’s just say, not the politest of ways… I passed the phone over to my mum after a while who has pretty much the same reaction as me. I remember going up to my bedroom and crawling back into bed, breaking down into tears out of pure frustration.

About an hour went by before my brother came into my room. He said that after the phone conversation with the oncologist, my mum thought I should have another two cycles of chemo, but that ultimately the decision was mine to make.

It was horrendous. I had gone from a feeling of pure ecstasy to feeling utterly betrayed in the space of a couple of days. How could my doctors do this to me?

After a short conversation, my will to not have more chemo caved and I agreed to two more cycles. I didn’t sleep well at all that night.

The meeting

The next morning, I’d changed my mind. Why should I have more chemo when this was the plan all along? It just all felt unnecessary.

So that’s what I told the CNS when she rang me in the morning to find out my decision. I made it clear that I felt betrayed by my doctor and that there didn’t seem to be any logical reason for me to have more chemo.

The CNS was slightly taken aback and suggested that I come in and speak to my oncologist in person the get a better grasp of why he had made this rather bizarre suggestion.

I remember walking into my oncologists office ready to explode with anger – but I knew I had to hear him out. This was my life after all. It wasn’t something I could make and ill judgement over based on my emotions at the time.

I sat down in the chair next to my doctors desk and prepared for a lecture. He looked pretty nervous as he began his explanation.

It turned out that his reasoning to give me more chemo was two-fold: 1) a new study had come out right at the end of my original plan for chemo had finished suggesting that people with my stage of Hodgkin’s lymphoma had a slightly better (and I mean marginal) survival rate; and 2) I was young so although my original treatment plan would suffice, my body would be able to take another two cycles of chemo and therefore a greater chance of eliminating any stray cancer cells.

After what felt like about a half hour-long speech justifying this new treatment plan, I still wasn’t convinced.

Not only were there MANY things I picked out about the study – such as a marginally better 5-year survival rate (which for Hodgkin’s is incredibly high at around 92%) not really making that much difference to my prospects – but I also argued the fact that I really didn’t want more chemo and therefore a higher chance of damaging my healthy tissue even further. So what I was young! What’s the point in exposing myself to more chemo for an extra 2-3%?!

My doctor continued to try and talk me into it but after a while I simply said “I’m sorry but you really haven’t convinced me that this is a good idea. If you’ve convinced me of anything it’s that I’ve already done enough.”

To my surprise, the CNS in the room with me was nodding. She agreed with me and so did my mum.

Frustrations to this day

The worst part about all of this? My doctor made out that the additional chemo was all part of the plan from the start.

That’s right – apparently I was supposed to have 4 cycles and then two weeks of radiotherapy all along. This is despite the fact that during the conversation regarding my second PET scan I was literally told that I’d fulfilled my chemo treatment and that I wouldn’t have to have anymore. And this is despite the fact that my own CNS phoned me after the meeting with my oncologist to confirm that the plan was to have two cycles and, dependent on the results of a second PET scan, I would either move straight onto radiotherapy or onto two more cycles of chemo. MY OWN CNS CONFIRMED THE ORIGINAL PLAN.

Even so, every time I go to for my now bi-annual check-ups, I am told that I refused to complete my chemo. Like I was the one that changed the plan!

The whole scenario means that I now have to live with the decision I made for the rest of my life – a decision I don’t even know was the right one. I have to live with the fact that I had to go against my doctor’s decision which in itself feels very alien (because you always trust a doctor’s judgement right?). I went with what was originally promised yet my doctor made me doubt myself so much to the point that I don’t know whether I should be blaming myself if, God forbid, my cancer were to ever come back.

You’d think that maybe losing my hair or feeling like shit 24/7 would be what I found the hardest part of my time with cancer. But no – THIS was by far the worst part of my entire cancer experience.

Chronicles of My Cancer, Part 2: the Chemo Days

cancer-plughole

Something I haven’t been back to in a while is my story with cancer so I think it’s about time I carried it on – and what better time to recall it than the Easter weekend!

If you would like to read part 1, you can find it here.

The Treatment Plan

So at this point – after being given a definitive diagnosis that I had Hodgkin’s lymphoma – it was time for me to start my treatment.

I remember sitting in a room with a CNS nurse who had called me in to discuss the treatment I was going to have. I was sat in a small consultation room in one of those padded armchairs with my mum to one side of me and a small desk with leaflets on it about Hodgkin’s lymphoma.

My girlfriend at the time (who turned out to be an absolute DICK – more on that at a later date) had come along also – a decision my mum thought would be a good idea as it would make her realise just how real the situation was (we were one of those on/off-every-two-weeks couples and she hadn’t really taken my diagnosis seriously).

I remember desperately hoping beforehand that I would have chemotherapy tablets rather than have the treatment intravenously because I was pretty scared of being turned into a human pin cushion. As it turned out, my worst fears were realised: I was to have two cycles of intravenous ABVD chemotherapy followed by two weeks of radiotherapy.

Beginning the First Cycle

Not much happened between that day and when I started treatment. I remember there being many re-tellings of my treatment plan to friends and family members to the point that I just wanted to get going with it. I went for drinks with my closest 5 friends and filled them in on the details. I let them know that I’d be pretty unavailable for the next 3/4 months or so. I felt like Edward Norton in 25th Hour – like I was going to prison or something.

On the day of my first treatment, I wondered into the chemo ward, expecting it to be a row of separate rooms with different people having their therapy in each one. To my surprise, it was a pretty small room – probably the size of an average living room. The reception desk was right in front of me as I walked in which was only about 4 feet away from the closest chemo chair. Everything felt incredibly cramped and very impersonal. I just wanted to sit on my own with nobody else in the room but my mum.

I remember feeling pretty nervous but happy we were going to get on with the therapy. I just wanted to get the whole episode of my life over with so the quicker we started, the better. At the same time, I remember having an overwhelming sensation of everything happening way too fast. This was cancer therapy we were talking about – surely we should take our time to make sure everything goes swimmingly? Instead, I was brought in, sat down and had a drip in my arm within the space of about 5 minutes.

On this occasion, because it was my first session, I got to sit in a private room to have my chemo. I don’t think it was an actual private chemo room, I think it was a consultation room and they just wheeled my drip through.

Once the line was inserted into in my arm, that was that. I had started my cancer treatment.

An Awkward Conversation and Irn-Bru Pee

Whilst I was sitting there bored out of my mind (there wasn’t a TV or anything in the room I was in), a representative for a children and young adult cancer charity came in to chat to me. The charity he worked for offered special days out for people of my age with cancer.

Along with that (I ended up choosing two full weekend tickets to Reading festival in case you were wondering), he started telling me about the kind of things I would have to be aware of now I was having chemo. There were loads of little things I’d never thought about: I should ask for a glass in a restaurant if I ordered a canned drink because the can might be contaminated enough around the mouthpiece that it could make me sick (especially important seeing as my immune system would be on its arse from the treatment). I should try and avoid acidic foods as much as I could because the chances were that the extra acid would irritate my stomach lining, in addition to the effect my chemo would be having on it already.

And then came the awkward info – I should avoid oral sex with my girlfriend because my “sexual fluids” (as he put it) would contain some of the chemo and I could therefore pass the side effects onto her. I mean, don’t get me wrong, it’s important information, but damn, I’d just met the guy 5 minutes earlier!

I think he was there for the entire 4 hours of my treatment. He eventually left after we co-munched our way through a bag of Haribo Starmix. I remember desperately needing a pee when the drip had finished and swiftly jogging to the toilet once I was allowed to. What was really weird was that my pee came out a lovely shade of luminous orange. Apparently it was due to one of the drugs that I’d been given. It’s also the reason why I feel a bit sick whenever I see a glass of Irn-Bru (not that that happens too often these days…).

The Dreaded Side Effects and Becoming Best Friends with the Plughole

I got home from my first stint as an outpatient, still waiting for the realisation to hit me that I had actually just started treatment for cancer. I remember sitting on the sofa in the front room feeling like I’d just finished a marathon. Every muscle in my body felt like they had absolutely zero energy left in them. I think I ended up nodding off for a couple hours or so.

Thankfully, that was the worst of my side effects after the first treatment cycle and I was pretty much back to normal by the end of the next day. Unfortunately, it wasn’t to last. The doctors had told me that the side effects would build up and that I’d gradually feel worse with each cycle. It was a necessary evil to make sure the cancer was getting no let up on the chemo front.

On a side note, I ended up splitting up with my girlfriend around the time of my first treatment cycle because she randomly decided to go on holiday for the exact length of time that my cancer treatment would take. A 2-month holiday that seemed to have been booked immediately after she found out I was to have cancer treatment. Coincidence? I think not… (told you she was a dick).

By the second cycle, I felt a bit more rough. For a few days after the treatment, I was feeling nauseous and incredibly tired all the time, but still, the side effects were manageable.

By the third cycle, the plughole started to become my best friend. Not only was my hair starting to fill it every time I had a shower (luckily, I never lost all my hair because I had really thick, curly hair at the time) but I would find myself looking at it a lot as I retched into the sink at least a few times a day. Things going anywhere near my tongue would bring on the sudden flood of nausea. Brushing my teeth suddenly became a genuine challenge.

Weirdly enough, I wasn’t actually sick too many times. There were plenty of moments of retching but very little actual being sick (although I did throw-up pretty much immediately once I’d woken up at home after my fourth treatment – brought on no doubt by the Pot Noodle I’d eaten just before I’d fallen asleep).

That was pretty much the pattern for both my third and fourth cycle. During my third, I was feeling sick literally 24/7 for a good week or so after my treatment. By the fourth, the feeling was so overwhelming that I was essentially bed-ridden for a couple of weeks and I barely ate anything. At that time, every evening I would dread waking up in the morning just to continue my nausea misery.

My sense of taste had also gradually deteriorated as the cycles went on. By the last cycle, I was pretty much exclusively eating salt and vinegar Walkers crisps as they were the only thing my stomach could take and that I could actually taste. I think that and my lack of movement contributed to me gaining about a stone in weight.

The Side Effects Part 2: the Long-Term

Those were all short-term side effects though. I do still have some long-term side effects too. I have a real problem with lavender handwash, mainly because it was the smell of the NHS-standard soap they had in the hospital toilets. To this day, I get a sudden wave of nausea whenever I smell it. My hair is different now too – what were once thick, big curls have now become thin, tighter curls (it doesn’t help that my genetics dictate that I should be losing my hair about this age, as evidenced by my two older brothers who lost their hair at my current age). I had this strange sensitivity along the top of both of my forearms for quite some time after I finished my chemo. I think that’s from the amount of needles that were jabbed into those areas though. I also have problems with my neck and upper back now where my radiotherapy was aimed at, meaning I pretty much always wake up with a stiff neck. And of course, I have the mental scars from it all (as you might have already guessed from this blog).

So after two months of living like a hermit and feeling like absolute shit, that was it. I’d finished my chemo. I can’t tell you how happy I was at the time.

Unfortunately my happiness would be short-lived. Little did I know, things were about to truly go tits-up.

Chronicles of My Cancer

What makes us think that we are special?

Is it because of our upbringing and the duty that parents perceive they have to make their children feel they can do anything in the world?

It’s strange isn’t it, how we believe what we do has a major purpose in this world inhabited by around 7 billion people. A world that is but a speck in the vast expanse of stars and galaxies we call our Universe.

Perhaps the illusion of self-importance is our way of dealing with the inevitable truth that what we do during our lives will more than likely go unnoticed in the ongoing timeline of our constantly reproducing species. Not even a blip in the history of time.

Before I go into a full-on psychoanalysis of human behaviour and the society that we live in, let me just reel this back in and relate it to what made me realise this bizarre behaviour of ours.

Cancer. Of course it’s cancer.

Recent studies indicate that the lifetime risk of developing cancer for anyone born after the 1960s in the UK is 1 in 2.

That’s 50%. Half of my generation and those that have followed it will be diagnosed with cancer.

That’s a pretty scary statistic.

So why then are we so surprised and shocked when someone we know is diagnosed with it? Why do we kid ourselves that it’s never going to happen to someone we love or someone we merely had a 5-minute conversation with one time at Tescos?

And that brings me back to my initial question: why do we think we’re so special?

A brief history of my cancer

If there’s one thing I had to comes to terms with with my diagnosis was that I’m not special. There have been thousands, hundreds of thousands, perhaps even millions of people who have had my type of cancer across the entire history of time.

My type of cancer incidentally was Hodgkin’s lymphoma – a type of cancer that begins in the lymphatic system (imagine it as the sewage system that runs alongside our veins and arteries). Our lymphatic system houses our immune system – our own personal army to fend off any nasties that want to harm us. Hodgkin’s lymphoma begins when a specific type of these soldiers goes a bit haywire and starts over-replicating, interfering with the proper function of various systems in our body.

Multinucleate

“Multinucleate”.

That was the first word that I saw on the specialist’s screen. During my consultation following a biopsy of a lymph node in my neck, the doctor brought up the results on his computer before letting me know the bad news.

Unbeknownst to him, I had already seen the term “multinucleate” and, combined with my patchy previous knowledge of some cancers, had reached the conclusion about a minute before he told me. His version of events just hammered home the realisation that I had cancer.

I will never forget that feeling. The cold, empty feeling inside as the doctor reminded you of the harsh reality of the world. His condemnation of me as no longer a person, but instead a “patient”.

Cruel irony

Let me rewind things a bit because obviously my encounter with cancer didn’t start there.

It was about a month and a half or so before that consultation that I kicked the whole thing off with a little visit to the doctors.

I was at Uni at the time and had been suffering from a major bout of the flu the week before. This, unbelievably to some, was my first ever experience of the flu at the tender age of just 21 (I can safely say I hope I never experience it again).

As with most people who’ve had a foray with the absolute douchebag virus that is the flu, I experienced the temperature, the dizziness, the rather unbelievable feeling of nausea without actually vomiting constantly, and my lymph nodes were swollen pretty much all over.

So I got through my war with the virus in a couple of days and started feeling back to normal after that. One thing that didn’t go back to normal though was a lymph node in my neck. It remained hard and… I would say swollen but it didn’t actually hurt… abnormally big (?) for a few days later.

At the time, I was finishing up my end-of-course project entitled – and yes, this is some cold irony right here – “The Personalisation of Cancer Treatment” (something that becomes even more ironic when realising that my course was a forensics course and had nothing to do with cancer except, what felt like, a slightly out-of-place module in my third year).

During my copious amounts of reading and writing about the disease, I had come across swollen lymph nodes quite a few times as a possible symptom of cancer that has spread. Bowel cancer, for example, can often spread to the lymph nodes in our abdomen and cause a lot of pain.

Having read all of that, I figured it was probably best to get it checked. I thought the doctor would just come out with the old “it’ll pass eventually” kind of response when I pointed it out to him, but then it’s always better to be safe than sorry right?

Thank god I did get it checked out.

My Uni doctor referred me to a local hospital for an ultrasound of my neck to clarify what exactly was going on. Even at that time, he reassured me that the chances of it being cancer were pretty low.

That cold, cold gel

So I went along to the ultrasound, happy as Larry. Perhaps this would just confirm I needed to take some anti-inflammatories for the next few days and I’d be back to normal.

They applied the gel – that cold, cold gel – and started to rub away on my neck with the ultrasound scanner, searching for the “abnormally big” culprit of concern.

They found the lump immediately, gave a few extra ultrasound rubs to make sure and then lifted the scanner away. I thought that was it.

In my peripheral vision I could see him looking at his monitor in detail. After a couple of minutes, he returned, instead pressing his scanner on the other side of my neck. He then proceeded to pass round the front of my throat and towards my collar bone.

Something didn’t feel quite right to me. It now felt that he was searching for something without telling me what it was.

After a few more minutes of probing, he stopped, he looked at his monitor a bit more, and then decided to inform me that it was all done.

I am passed some paper towel to mop away the gel as he starts explaining to me what he had seen.

Apparently it wasn’t just the one lymph node that was abnormally big, it was several, either side of my neck and down near the collarbone.

He didn’t go into detail about the results too much but seemed pretty convinced that this was a result of the virus I had contracted a couple of weeks ago and that “everything would be fine”.

The phone call

Life went on like normal for a couple of days after that. I was waiting on my doctor to give me a ring to tell me the results. In the meantime, I carried on plugging away at my dissertation.

I ended up getting a phone call mid-morning another day later from my Uni doctor. Here’s how I remember the conversation:

“Hello, is that Marco?”

“Hi, yes this is him. Who’s calling?”

“It’s Dr. (I forgot his name), the University campus GP. I’ve phoned you to discuss the results from your ultrasound.”

At this point, I had already taken note of the rather sombre tone of voice he was using. It didn’t sound too promising…

“Ok, go ahead”, I said.

“Would you like to come in to see me in person or would you mind me telling you your results over the phone?”

If the alarm bells weren’t ringing already, now they were clanging as loud as they could. Why would he want to tell me the results face-to-face unless it was bad news? That was my first thought anyway, then I naturally started to reassure myself with the possibility that it was something to do with patient-doctor confidentiality. Until he added an extra line of dialogue:

“You may want to bring a relative with you.”

That was it. That was when I knew I had cancer. Not that something was wrong, no. I had cancer.

Things started to piece together too easily for me to come to a different conclusion. The careful prodding and stopping of the ultrasound man searching for something I didn’t know was there. The sadness in his eyes hidden by the false, patient-friendly smile that he gave me when he proclaimed that everything would be fine. And now my GP wanted to speak to me face-to-face with a relative if possible.

I phoned my mum. She said she’d be down in a couple of hours. She arrived and we went to see the doctor. We sat down, mother and son brimming with curiosity as to what the doctor was going to say.

I was already in tears before he said it.

“I think you might have cancer.”

Looking back, I find it incredible that a GP had the nerve to make an assessment purely based on an ultrasound. But even so, he said it. The room fell into silence for a couple of seconds and then went by in a blur as he and my mum began to discuss the results. I was busy looking out the window, wondering what would happen in the coming months or even years.

I found myself outside the doctor’s room with my mum after our 10 minute or so appointment. She immediately hugged me and told me that we didn’t really know 100% if it was cancer until I’d had a biopsy of the lymph node in my neck and at least a couple more scans.

Space handgun

My Uni doctor had referred me to a specialist back home who put me forward for a biopsy through the NHS, but my mum insisted on organising it through private healthcare to get a diagnosis as quick as possible.

I traveled home in the morning to get to the midday biopsy appointment.

After a couple of minutes briefing me on what exactly was about to happen, I had to lay back and be injected in my neck with some local anaesthetic, right by where the enlarged lymph node was. This was quite possibly one of the weirdest sensations I have ever felt.

The doctor had told me that there would be two types of biopsy taken that day – one was a “fine needle aspiration” of the lymph node and one was a core biopsy.

The fine needle aspiration went by fine, I couldn’t feel anything at all.

The next thing I knew, the doctor had pulled out what I can only describe as a space handgun of some sort and placed it against my neck where the lymph node was.

“This may feel a bit strange and, although you won’t feel pain, you will feel some pressure as the needle takes a core of your lymph node.”

“Strange”. Yeh, you could say that again. The anaesthetic injection to the neck was weird enough, but this coring of a lymph node was even weirder, almost like I’d been shot in the neck but without any feeling of pain.

In a bit of a daze following the gunshot I’d just experienced to my neck, my doctor proceeded to explain that the biopsies would then be sent to a specialist to analyse and that my consultant would explain the results to me in my next consultation.

He then showed the the lovely core he’d taken of my lymph node. Lovely.

“Multinucleate” – Part 2

It is at this point we return to the land of multinucleate cells.

I had already seen my consultant before the biopsy who gave my neck a feel and a prod and gave me the reassurance that the lymph node was “the wrong shape” to be cancerous.

He was pretty cheery that last time, convinced that there was nothing sinister going on in the depths of my neck tissue.

This time round he was a lot more stern and emotionless, making sure he held the door open for us both as we walked into his office and asking if my mum needed help sitting down (he hadn’t bothered the first time so even at that point it seemed a bit odd).

After a minute or so of checking if I was feeling alright, he proceeded to pull up the results of my biopsy on his screen.

And that was when that horrible word “multinucleate” shone out at me like a sore thumb.

And that’s where I’ll leave my little story at the mo. I say little, this is already 2000 words! I’ll chronicle the rest of my cancer in time.

Speak soon.