Reactive node!

Had another ultrasound today and am very relieved to report that all is normal and the node - I had to point it out to the doc, so invisible was it to the ultrasound scanner - is of normal ("sausage") shape and not enlarged. Most likely a "reactive node" to my cough/cold form a week - nothing to worry about from their perspective.

He scanned all of my neck and didn’t see anything. My heart pounded heart on the examination bed - the last ultrasound led to my diagnosis.

At that time, when I was diagnosed with HL, I had nodes raised all over the neck, both sides. They were visible on the ultrasound (when I looked) - big pools of white with fluid inside. 

So when they ultrasounded me it was like OH YAH something is really wrong. 

But on this time he was looking all around and saw nothing which is great, and I even had to point out where the node was. 

So, slowly but surely, I am trying to adjust to the fact that I am okay. And likely cancer free.

Will try to write another chapter soon.

Chapter one - I'm trying to write up my experiences a bit. Wonder what you think...

"Come on, we'll miss the bus", Mum called from the living room, draining her green tea. 

"Alright, alright" I said. 

I pulled on a t shirt from my drawer and changed from my pyjama trousers to my chinos. I checked I had my train pass, my keys and chewing gum. I needed gum for my mouth. I then did up my Granddad's belt, forcing the link through the loop my Nan and I had poked through it when I'd borrowed it last. I was best man at my best friend's wedding that day. I'd not worn it for a while. But, now, I'd wear it whenever I went out; I'd worn it every day I went out since January. Ancestral protection. A symbol of enduring love beyond the grave. 

It was a warm day in June. The 12th. I'd been 26 for 2 months. 

I was with my Mum, and it was the last workday I would be off sick for a long while. We were going to the temple.

We walked to the bus stop; it was really nice out, too early for mosquitoes to bother me (they always love my blood), but warm enough for me to not fret too hard about forgetting my jumper. The 15 came round the corner, "TRAFALGAR SQUARE" writ large in the pale white light on the front, its ladybird red distinctive of buses, London style. It trundled towards us and stopped; we got on - Mum dislikes the stairs, but I went up to the top and sat at the front.

We rode out of my area, down Poplar High Street. The sunlight came through the trees that gave the area its namesake, crisp and true, in rays of blinding gleam. We crossed Saltwell Street into East India Dock road, eventually making our way to the long stretch of Commercial Road. I put on my Raybans as the sunlight began to illuminate the front of the 15 bus. 

We rode down the expanse of Commercial Road, past Limehouse into the Shadwell area. The shops spoke to the Asian identity of the area. Stylish ladies in hijab roamed the street; the shops sold saris with their makeshift signage. I saw the Holiday Inn on the right, just past Watney Market. Cavell Street. The Cavell Street entrance to the Royal London hospital loomed into view in my mind's eye. 

I'd been there before.

***
It cold day in December. New year's eve. I'd be hosting Rob and AJ that night, cooking curry and drinking prosecco to see in 2015 among lifelong friends. It'd be a good year, I'd promised myself.

My family had come back from a freezing Tokyo to a London of more genteel chilliness. No-one wanted to come back; no-one wanted to know what would happen next. We wished we could've watched the koi suck at the food we dropped into their pools in the zen gardens forever.

We alit from the bus at Watney market and crossed the road. The street down past the holiday inn. Us three strode toward the looming blue buildings. My mum was there, alongside my cousin, visiting from school in Southampton where she was studying from her A levels. I think she had some vague idea of what was going on, but I wasn't sure. It sounds cruel, even now, but I'm not sure I cared.

Royal London. ENT department. Ear, nose and throat. I was going to be seen. Seen urgently.

NHS waiting rooms are always dour. Grey walls, harsh plastic chairs in garish yellow that look like they were all formed in tandem, blocked together from some huge slab of acrylic and placed impassively on those matte floors. I saw people leaving, discharged. I saw people coming in, queuing up to be checked in.

Behind me, I heard a conversation:

"...he wants to get it all checked, it's not normal, he said. I think he said something about putting a needle in it; it's been swollen up for too long... What even is lymphoma anyway?"

I closed my ears. 

I'd looked it up when the GP had seen me earlier in December. 

"I am not happy", he had said, as his hand closed around the pulsing mass beneath my jawline. It was the size of a cricket ball. He booked me to a referral in hospital, and told me to be ready in the next few days.

"But I'm going to Japan! In 2 days! For almost 2 weeks!" I countered at that suggestion.

"You don't seem to get it", he replied in an incredulous tone; "I am referring you URGENTLY... have you ever heard of lymphoma?"

At home, a cup of milky tea in hand and teary eyed, I googled it. I had now.

Back in the Royal London, a trip to the Far East later, my name was called. 

“Thomas Cantle”

Ugh, they always have to say bloody “Thomas”, I thought, recoiling at a name I didn't really recognise.

Dr Salem as a stocky man, with short, tightly curled light brown hair. He looked vaguely Middle Eastern - Egyptian, I guessed, after reading his first name on his NHS identity card. He had a kindly face, but seemed to struggle to look you in the eye when he spoke.

“Now, we are here because we need to check, just to rule out the possibility of anything… bad… being there. Remember, this is all to rule out the worst. Okay? Now, let me take a look at you...”

He got up and stood behind me, and, starting from the edges of where my skull met the skin behind my ears, felt his way down to my collarbone. I winced as he did it: although his touch was not rough but rather the studied lightness of a practiced medical examiner. The swellings in my neck reacted angrily as he prodded them, sending a jolt of moderate discomfort through me.

“Okay", he said, sitting down in front of me again, "I think what you may have is a branchial cyst. It’s a rare defect that one can get at birth, but can swell up sometimes unexpectedly. It happens actually about your age when it exists. So, what I will do now is put a probe down your nose just to see what is there in your throat - sorry about this, but we have to. We need to be sure there’s nothing sinister”

It was my first medical procedure ever. And it felt weird. A healthcare assistant came in with the equipment - what looked like a black VCR connected to an old monitor (again with black finish), except there was a black line protruding from it that had silvery tip. When the assistant wiped it with disinfectant, a tiny fleck of light glistened from the top. A camera.

Dr Salem told me to relax and breathe in through my nose. As I did, he lowered the tip of the black wire through my nose. It felt odd - like I’d gotten my little finger stuck up there if I'd picked it too forcefully (I was always very snotty as a child). Every breath felt laden with mucus and, for want of a better term, thick.

He moved the wire around between his forefinger and thumb. I swore I could feel the end swivelling around somewhere behind my mouth.

“No, no masses… okay. Nothing sinister I don’t think Thomas. What we have to do now is get you in for an ultrasound” he said, as he slowly withdrew the wire from my nose. When it came out my nose streamed; in tandem my eyes watered involuntarily, although it was not at all painful.

As I was cleaning myself up, my Mum asked

“Will this be today?”

“Yes, yes - it’s in the next room. Go back to the waiting area and we will call you through”

The yellow acrylic welcomed me back. Mum texted Dad that it was perhaps a branchial cyst, and looked it up on wikipedia. I sat there and felt relieved.

“Thomas Cantle, please”

I walked through the brightly lit corridor, beyond the room I'd seen Dr. Salem in, to an adjacent, darker room with a bed on it. A lady whose name I now forget introduced herself to me. As she did, and we exchanged pleasantries, I registered an imager behind her - difficult to describe, but think of those contraptions you may have seen whenever anyone is getting their unborn child examined on TV.

She coated something that looked like a microphone - undimpled, of course - in some gel, and wiped some one my neck, too. It was cold. I got goosebumps. My neck is pretty sensitive. 

She then started rubbing it against my skin, pushing the globular top of the instrument fairly hard against the left side of my neck. 

“This isn’t a branchial cyst", she declared. "Looks like glandular fever to me… you’ve got all these little swellings everywhere. And look", she said, wiping it against my right side, "they’re on the other side, too.”

New to me. I felt a cold sweat break out.

“Okay, I’m going to take a sample now. Hold still, it’s just an injection. I may need you to come in again, just in case I don’t get enough cells. Sometimes it happens, like, in 20 percent of cases”

The needle felt odd as it pierced my skin and she drew the fluid from me.

The yellow acrylic greeted me once more as I told mum what had happened. She said something neutral - I forget what - but I saw her eyes widen with panic. I reached out to take her hand. Or at least, in this version of events I did. It all seems quite hazy now.

“Thomas”

The ultrasound lady’s assistant had come out to get me, what seemed like only seconds after I'd sat down; apparently, they hadn’t gotten enough.

“Okay, sorry, it didn't work. I’m going to grab something from the other side. What about this guy?” she said, moving round to my right.

She spoke and pricked me at once; I think I yelped slightly, and pathetically, as she drove the needle in. I waited until she withdrew it, and left, taking a seat on the cold plastic next to Mum and my cousin.

I felt like I waited ages. As I did, my life rolled around in front of me, in my head. It wasn’t a branchial cyst.

“...what is lymphoma anyway…?”

“Thomas”

Dr. Salem appeared at the end of the corridor and motioned at me. I’d seen him talking to a man who was suited and booted to a snazzier degree than the other doctors in the corridor - the consultant, I guessed - with my file open.

Mum came with me, leaving my cousin with the other waiting people.

Dr. Salem motioned at me to sit. I remember now, telling this story, that he had one chair for his patient that I sat on; it was red, and well cushioned. Mum and my cousin sat in standard issue plastic chairs next to me. In his hand he had a yellow slip of paper. I felt cold.

“Now Thomas, you know why you are here and why we do these tests. We want to rule out the worst and reassure. We want to find out what is wrong. But we do these tests for a reason. And, sometimes, we find something we don’t want to...”

My heart felt like it was falling through the floor; it quickened its pace and and felt like it was smashing through my ribcage. I wanted to drink. I wanted to smoke. I felt like I was falling apart, joining my heart as it hit the concrete below the building and smashing into a million pieces.

“... this isn’t a branchial cyst. This is the lymphoma.”

What followed next was a blur. I don’t remember too much. My mum asked lots of urgent questions. 

".. the endocrinologist had suspected after looking at the first cells in the microscope, and it was confirmed with the second..."

I was in shock and breathing hard, fast, panicked breaths, unsure of where to look, how to react, what to do.

Dr. Salem grabbed my hands and spoke to me -

“You probably won’t take this in”, I remember him saying, as he explained what was wrong and what was next. Chemotherapy, radiotherapy, all these things that other people went through. But not me, it was never me.

"... it's very treatable.. the prognosis is excellent... you will be fine..."

I didn't feel fine. I felt winded, askew, lost in a sea of mortal peril. I went to have a pre-op with a nurse. I’d be having an operation, a week later - a biopsy for them to confirm the diagnosis. 

All I remember is that he wrote it on a piece of paper, telling me “this is what you have…”

In his expansive scrawl, on a sheet headed with “Bart’s Health, NHS Trust”, he had written the words:

“Hodgkin’s Lymphoma”

I walked into the Royal London a worried boy.

I left it a cancer patient.

Rude awakening

a quiet few weeks - today (well, yesterday now, I'm at the cusp of a new dawn) was 2 months since chemo, and 3 weeks since the end of rads. My physical side effects are mostly gone -my mouth is still a mite dry, and my gag reflex is still mighty poor, but, other than that, things were going well.

Until last week. I developed a cough and went to get some antibiotics. So far, so good.

I also felt my neck for the first time in ages. And found a little bump on the left side. Yeah, okay, relapse at this point is incredibly unheard of. But still - these little bumps were the precursor to something nasty (HL!) taking hold. Cue, well, not panic, but discomfort inside. Suddenly little twinges in my neck became new nodes sprouting again; little itches in my feet (which normal people get all the time - except I don't quite remember normal anymore) became big stings that required the light on every 5 mins to check if they were Hodgkin's angry red marks. Fear begat sleeplessness- cancer tiredness? No, surely not - I feel a lot more energetic and far fitter these days.

Look, I've fought it down and held it together. I've survived what I've had to survived and did it with as much strength as I could muster. But I honestly thought that might have been it. I really hope that there isn't more in store, and it's just - well, I don't know what it is. Maybe a reaction to my virus (very mild; antibiotics a precaution)?

So, I'm going back to the chemo ward on Friday morning to get checked out. Yep, good ol vom central. I really CAN wait. I feel sick whenever I think of going up there.. I hope it's all okay.

I'll write on Friday after being examined - I'm guessing it'll be a "watch and wait" but, I hope, they'll just say it's nothing to worry about; hopefully nodes stick up in other people, too. It's just that nodes sticking up doesn't lead to cancer in other people. So let's hope I've rejoined everyone else again, rather than being cancer boy reincarnate.

Moving on

It's been quite a while now - sadly I'm a bit sick, having caught a VERY mild cough. However, in post-cancer land, this means antibiotics. Nevermind. I get worried whenever anything seems wrong, whenever I have a slight itch, whenever I feel a bit sick. Any twinges to the neck, anything like that, I'm worried straight away.  I think the long term mental effects will always be there.

The final scan is the first week of September. The second week of September I have my final meeting with the doctor. After that, I hope life will return to normal. It's all a bit confusing, because it's like there's a limbo between being happy it's the end of therapy BUT I don't have the final end outcome yet. I'm trying to forget about it for now, but it's still like the final block on moving on.

Apart from that, everything has been slowly reverting back to normal; whatever normal means. I've returned to my job, returned to having a fairly active social life, and am trying to write about my experiences in the hope that it'll be cathartic. I used to write a lot of poetry in the past, but it's tough.

Here's an effort for this week:

Thomas is my NHS name
They'll all say it when they see me -
"Hi Thomas, I'm..."
"How are you today, Thomas?"
"We're going to put the needle in now, 
Thomas
The canulla is going in now"
"I'm sorry for the pain, Thomas -" 
She said, as I dry wretch
"Your veins are bent out of shape;
It's because the chemo drugs
Has clotted them all up so
They don't flow so well anymore"

"If you'll lay down on the slab, Thomas"
"Thomas, here's your chair for today"
We'll do what we can to keep you alive,
Thomas; my body was broken and 
Couldn't fix itself - 
It was eating itself
And replicating itself
And misreplicating itself
And duplicating itself
And misduplicating itself and
Killing me

"Thomas, you've done really well - 
As far as I'm concerned, 
You're in remission"
You've got no hair, you've got weird nails,
Your immune system is shot
And your muscle has wasted away
But he's alive, is Thomas -
I'm not sorry to say I hope
To never see you again