I look back on it now and think that it was a surreal 6 months. I saw a picture of myself without hair the other day and just felt sad - it was like another me that I pitied, empathised with and didn't want to be again.
It's not been easy, readjusting to your "old" new life, post cancer. You can find yourself feeling rudderless, confused, misunderstood.
After the initial blaze of relief (not celebration; it's important to remember that, you've lived with it for so long that celebration is rarely what you feel after the all clear, more a "thank [insert god/expletive] that's all over") came the need to reassert control over my life. But it's hard, so hard - you feel like you want to make up for the lost months, go full pelt and try to make yourself the life you promised yourself when you were sick. That impulse becomes overwhelming and overbearing.
However, most people don't really understand this. I'd sat through horrific things, and I returned to work full time to hear people expressing serious discontent about trivial things; I reremembered the ludicrous politics; the rat race of everyone trying to climb the greasy pole. And I recoiled, I honestly did, thinking "you all have no idea". I wanted to improve, to be the best me. You want change, but you only upset people in your haste to make it happen. The world had moved on whilst I hairless, and I didn't feel like I was rewarded for what I'd gone through.
When this all came to a head, I was feeling a bit upset a little while ago and had a week off to recollect. I'm so thankful I did. In that week I did nothing - no thinking about the future, no despair at my disassociation from what I'm doing at work, no pressure. And I relaxed, exhaled and felt for the first time in a while that, yeah - it's all going to be okay.
Because cancer scars you. Physically, I have the big cut across my neck from my biopsy. I still itch and become super paranoid when I do. I have sleepless nights. Beneath my skin, I have big lumpy scars in the places that the nodes once were, that still give me a fright sometimes. Mentally, I fear more than anything it coming back. I'm trying to cut out a nervous tick that sees me touch my neck constantly.
But you can't help but move on. Time is always the healer.
In the last few months there have been shining positives. A lovely person has come into my life which makes me smile. My amazing friends are still there, as they always have been, for me. My family have been absolutely incredible in their unflinching support for me - my Mum, Dad, sister and Nan were with me every step of the way and I cannot express, even in words (lucidity of articulation being one of my key attributes) how thankful I am to them for everything they have done for me, unselfishly and unconditionally. Plus all other extended family members for their loving, unstinting support. And I've been taken onto a prestigious programme which is very exciting. I'm more confident in myself (oh dear, I'm sure you all sigh :) ), what I want to do and am even less afraid of what other people think of me. More changes are in the offing.
I'm now moving towards where I want to be - it's been slow, arduous and occasionally frightening. In a while, I'm sure it'll become less and less prominent in my thoughts. I'm working on it, and I'll get there. I'm alright now - it's just a case of me and myself coming to accept it.
Wednesday, 28 October 2015
Thursday, 17 September 2015
Tuesday, 15 September 2015
The one before it was all fine again
I really hope this is it.
It feels like so long ago now, such a surreal time had been had. I feel like the same person, yet simultaneously altered. Older somehow.
Yes all the same frailties exist, but I'd hope there's now some steeliness beneath with which to carry on.
I've got to admit, I'm sipping at a beer to try to help me sleep later - I'm going to be pretty agitated. Don't think I've slept much the last few days as my overhanging sense of nerves has affected me subconsciously.
I think it's all going to be okay, though. No pain, no real itching, quite energetic.
So we go on, so we go on... I don't have too much to say apart from an extant, searing hope that it will be okay.
If I can, I'll write in detail for tomorrow.
For tonight, cheers. And here's hoping that this is the end of something awful, and the start of something that'll last the rest of my life; basic healthiness.
It feels like so long ago now, such a surreal time had been had. I feel like the same person, yet simultaneously altered. Older somehow.
Yes all the same frailties exist, but I'd hope there's now some steeliness beneath with which to carry on.
I've got to admit, I'm sipping at a beer to try to help me sleep later - I'm going to be pretty agitated. Don't think I've slept much the last few days as my overhanging sense of nerves has affected me subconsciously.
I think it's all going to be okay, though. No pain, no real itching, quite energetic.
So we go on, so we go on... I don't have too much to say apart from an extant, searing hope that it will be okay.
If I can, I'll write in detail for tomorrow.
For tonight, cheers. And here's hoping that this is the end of something awful, and the start of something that'll last the rest of my life; basic healthiness.
Monday, 31 August 2015
Final scan tomorrow
Nervous?
You bet. It's been a long while since anything.
Scanxiety, we call it on the macmillan group.
I'm really anxious about the needle going into my skin. About the cannula being inserted. The pain I'll feel. Whether they'll be able to progress it.
But most of all I worry. Is it still there? Is it all gone? I feel my neck still quite often, wondering if there's anything raised. I see my scar from before infringing on the left hand side of my neck. Pushing it all up a little bit. Meaning the skin is slightly more raised on my left than my right. Any little pain in my neck and I can't leave it alone.
Psychological scars, I tell myself. Psychological scars.
People always say to me - do you not want the results earlier? I say I'm not sure. I have had a long time to go through all of this and try to get my life in check. Now, I just want it to be over.
Time always marches forward, and there's nothing we can do except live in the reality in which we are presented.
I just hope this is the last time I ever have to worry about this. The numbers are on my side. The asymptomatic reality (i.e. without scaring myself, I think that there's probably nothing there) is also behind me.
Let's get this done.
You bet. It's been a long while since anything.
Scanxiety, we call it on the macmillan group.
I'm really anxious about the needle going into my skin. About the cannula being inserted. The pain I'll feel. Whether they'll be able to progress it.
But most of all I worry. Is it still there? Is it all gone? I feel my neck still quite often, wondering if there's anything raised. I see my scar from before infringing on the left hand side of my neck. Pushing it all up a little bit. Meaning the skin is slightly more raised on my left than my right. Any little pain in my neck and I can't leave it alone.
Psychological scars, I tell myself. Psychological scars.
People always say to me - do you not want the results earlier? I say I'm not sure. I have had a long time to go through all of this and try to get my life in check. Now, I just want it to be over.
Time always marches forward, and there's nothing we can do except live in the reality in which we are presented.
I just hope this is the last time I ever have to worry about this. The numbers are on my side. The asymptomatic reality (i.e. without scaring myself, I think that there's probably nothing there) is also behind me.
Let's get this done.
Friday, 24 July 2015
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.
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.
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.
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.
Monday, 20 July 2015
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.
"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.
Thursday, 9 July 2015
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.
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.
Friday, 3 July 2015
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
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
Monday, 22 June 2015
Since the last treatment
Almost a week on, and I can't really write tomorrow, so figured I'd do this today!
So it's been a little while now, and I've seen some real improvements in my digestive tract. Day-by-day it's been getting better, from really struggling during my holidays last week (mostly spent playing my PS4, forcing down porridge, and then working out before forcing down some soup) to it being almost fine today.
Towards the tail end of last week, my tongue, I realised, had gotten quite swollen up which made eating quite interesting! It never struck me that when you eat you move your mouth in a set way, which meant that this one area was consistently clipped by my teeth :( - very painful by the end. But, with a steady flow of painkillers, rest and time, everything's receded.
On Saturday, I went out for a meal with my parents and, on Sunday, I had food round my friends and found that eating became gradually easier. Today, I felt like I was beginning to some of the drugs for no real reason and could actually ENJOY FOOD AGAIN, which was lovely.
And, more than anything now, my HAIR IS GROWING BACK. I now look like I've shaved my head by choice rather than to try to pass as a normal person. Oh dear, oh dear. But, at least, a sign of improvement like I'm not all cancery and chemotherapy-like anymore :)
Here's a pic! Ignore the sadface - it was the only one that was vaguely acceptable for the net lol... Write soon :)
So it's been a little while now, and I've seen some real improvements in my digestive tract. Day-by-day it's been getting better, from really struggling during my holidays last week (mostly spent playing my PS4, forcing down porridge, and then working out before forcing down some soup) to it being almost fine today.
Towards the tail end of last week, my tongue, I realised, had gotten quite swollen up which made eating quite interesting! It never struck me that when you eat you move your mouth in a set way, which meant that this one area was consistently clipped by my teeth :( - very painful by the end. But, with a steady flow of painkillers, rest and time, everything's receded.
On Saturday, I went out for a meal with my parents and, on Sunday, I had food round my friends and found that eating became gradually easier. Today, I felt like I was beginning to some of the drugs for no real reason and could actually ENJOY FOOD AGAIN, which was lovely.
And, more than anything now, my HAIR IS GROWING BACK. I now look like I've shaved my head by choice rather than to try to pass as a normal person. Oh dear, oh dear. But, at least, a sign of improvement like I'm not all cancery and chemotherapy-like anymore :)
Here's a pic! Ignore the sadface - it was the only one that was vaguely acceptable for the net lol... Write soon :)
Wednesday, 17 June 2015
The one when it was all over
Oh my. I don't know where to begin.
People have asked me lots how I'm feeling. Pleased? Elated? Relieved?
No. None of those really. The closest I can come is sanguine. I've lived with this for what seems like an age now, so I didn't feel too much at all. Today, come 4pm, I did think "oh, it's nice that I'm not in hospital", but it's just felt like another day (albeit a day I'm off work)
 |
| My mask - now at home |
I feel tired and my dysphagia (difficulty swallowing) continues, which might be another reason why this is still feels like it's an ongoing concern. I woke up at 11 today (surprisingly not in too much pain) and pottered around. Eating is the main problem currently; my tongue feels a bit swollen and has some nasty irritated/sore bits adorning it at the edges, right where the teeth normally are just out of contact with it at the back. Eating is thusly an exercise in how much niggly pain I can tolerate before I give up: I managed a whole bowl of porridge, but couldn't eat my dinner and instead had to supplement with a tin of fruit and custard. Gourmet dining it was not.
Once my palate returns and my food is enjoyable again (it's actually so sad not enjoying eating, despite the positive affect on my figure post chemo weight gain... damn chocolate bars) I think I'll truly feel like something has happened, and life will become something I can enjoy a bit again. Maybe I'll feel like I can write something profound (the crowning glory that this blog deserves?) at some point soon.
But, for now, all I'm going to do is rest up and will my digestive tract to sort it's life out. Just as I've been waiting for my body to do the same. I'm off until Monday, so hopefully there'll be a tangible improvement day-by-day. After all, today and tomorrow are simply like having another weekend off - it'll only be on Friday when it will have been 3 days since a rads sesh that maybe things will ameliorate.
Write soon - once I'm feeling a bit better.
T
Tuesday, 16 June 2015
The night before the end
Just dawned on me that it's the last time I'll go to sleep with a cancer treatment coming the next day. Fairly momentous.
I can't believe I get to take my mask home tomorrow.
I just want to get this done for now. I'll pause and reflect on what I can tomorrow... It's a lot to take in.
Friday, 12 June 2015
Liquid life
Almost the end of treatment now! After today's radiotherapy it'll be 13/15 "fractions" of rads done - only Monday and Tuesday to go. I also have taken Wed 'til Fri of next week off to recuperate.
Hopefully by then I'll be able to start eating again. I've almost completely stopped eating solid food now (the insides of my gums are very sore now, so eating anything salty is akin to salting a wound.... horrendous), instead relying on these nutrition drinks for, basically, everything.
As you can see, there's a few flavours - I think I have vanilla, chocolate, cappucino and the 'fruit of the forest'. I don't really like the latter one - tastes like thick blackcurrant milk, almost. Blurgh! However, the others don't taste too bad; just like milkshake. They're basically drinks packed with calories, vits and all the other bits and pieces one needs for staying nourished; I might have to move to drinking 4-5 a day and totally replace eating early next week.
The painkillers I have been using are strong, as I said before. They've been so good in numbing the intense pain that was brewing at the start of the week, but it must be said that I feel like I'm living a weird existence due to how strong they are, trapped inside my own little bubble of cotton wool. There's also a set regime now to using them daily. All of this I'd like to write down so I remember this later on in my life.
In the morning, I'll wake up in quite intense pain - it kind of feels like knives in my throat (or, as I prefer to say although most people won't get the reference, like my throat has transmogrified into the sarlacc). I'll get up and do my artificial spit swishing, whilst dissolving an effervescent painkiller in some blackcurrant cordial and water. After swishing I'll (very slowly) drink down the painkiller. Every sip is fairly agonising, and I normally have to stop for a couple of minutes midway to let the pain go away - this morning I gagged a bit and started to cry (not blubbering sadness, just involuntarily from the pain in my throat). Upon finishing the cocodamol, I'll then start to disperse the aspirin in the Mucilage mixture whilst I get my things ready to leave. Finally, I'll try to gulp down the Mucilage in two gulps before leaving, slowly drinking one of the protein shakes as I walk down to the DLR.
By the time I reach work (having chewed gum on the tube in to get the saliva going) my mouth feels a bit more numb. I'll drink some coffee (with cold water mixed in to get it to lukewarm temp) and continue to chew gum. By 11/12, I'll be hungry, but won't be able to eat until the 1, when it'll have been 5 hours since my last cocodamol / Mucilage combo and I'll be able to mix it again. I do, and after I've downed it I will run out to see if I can get anything I can process for lunch. I can just about 'eat' soup, and slippery things like raw fish (I've picked up some salmon sashimi (raw salmon, Japanese style)) the last few days, but a things have to be timed for my painkillers to kick in, which is a weird experience.
I'll walk to radiotherapy about 3:30, getting there for 4. I'll lie motionless, lost in my own thoughts, as the machine deposits its radiation in my cells. I get the tube home, very hungry now, and have a nutrient shake to supplement me (and stop me feeling faint). By 6:30-7, it's time for another cocodamol / Mucilage combo (after another swish with the artificial spit), and a quick race to force down anything I can - a really soft roll smeared ('fortified', as the NHS literature puts it) with cream cheese dipped in tomato soup is all I can manage, until my gums start complaining (despite the numbing effect of the pain killers - revealing how much is actually being blocked out) and I chuck away the soup in favour of a few scoops of froyo.
Before bed, I'll swish again and, at the last possible moment (probably about 11:30, when I'll be in a fair bit of pain because the painkillers will have worn off and my digestive juices will be irritating my gullet a bit) I'll mix a cocodamol and drink it before sleeping... the painkiller will help me fall into a sleep. It's never dreamless; I'll dream of lots of things; having hair, smoking, people who cared for me; foreign lands; happiness. I'll wake up in pain and go to the toilet twice a night, and force some water down my aching throat; the painkillers only dull so much.
I'll wake up each day in quite intense pain; but it'll be another day closer to the end of treatment and the resumption of normal life.
Tom
Hopefully by then I'll be able to start eating again. I've almost completely stopped eating solid food now (the insides of my gums are very sore now, so eating anything salty is akin to salting a wound.... horrendous), instead relying on these nutrition drinks for, basically, everything.
The painkillers I have been using are strong, as I said before. They've been so good in numbing the intense pain that was brewing at the start of the week, but it must be said that I feel like I'm living a weird existence due to how strong they are, trapped inside my own little bubble of cotton wool. There's also a set regime now to using them daily. All of this I'd like to write down so I remember this later on in my life.
In the morning, I'll wake up in quite intense pain - it kind of feels like knives in my throat (or, as I prefer to say although most people won't get the reference, like my throat has transmogrified into the sarlacc). I'll get up and do my artificial spit swishing, whilst dissolving an effervescent painkiller in some blackcurrant cordial and water. After swishing I'll (very slowly) drink down the painkiller. Every sip is fairly agonising, and I normally have to stop for a couple of minutes midway to let the pain go away - this morning I gagged a bit and started to cry (not blubbering sadness, just involuntarily from the pain in my throat). Upon finishing the cocodamol, I'll then start to disperse the aspirin in the Mucilage mixture whilst I get my things ready to leave. Finally, I'll try to gulp down the Mucilage in two gulps before leaving, slowly drinking one of the protein shakes as I walk down to the DLR.
By the time I reach work (having chewed gum on the tube in to get the saliva going) my mouth feels a bit more numb. I'll drink some coffee (with cold water mixed in to get it to lukewarm temp) and continue to chew gum. By 11/12, I'll be hungry, but won't be able to eat until the 1, when it'll have been 5 hours since my last cocodamol / Mucilage combo and I'll be able to mix it again. I do, and after I've downed it I will run out to see if I can get anything I can process for lunch. I can just about 'eat' soup, and slippery things like raw fish (I've picked up some salmon sashimi (raw salmon, Japanese style)) the last few days, but a things have to be timed for my painkillers to kick in, which is a weird experience.
I'll walk to radiotherapy about 3:30, getting there for 4. I'll lie motionless, lost in my own thoughts, as the machine deposits its radiation in my cells. I get the tube home, very hungry now, and have a nutrient shake to supplement me (and stop me feeling faint). By 6:30-7, it's time for another cocodamol / Mucilage combo (after another swish with the artificial spit), and a quick race to force down anything I can - a really soft roll smeared ('fortified', as the NHS literature puts it) with cream cheese dipped in tomato soup is all I can manage, until my gums start complaining (despite the numbing effect of the pain killers - revealing how much is actually being blocked out) and I chuck away the soup in favour of a few scoops of froyo.
Before bed, I'll swish again and, at the last possible moment (probably about 11:30, when I'll be in a fair bit of pain because the painkillers will have worn off and my digestive juices will be irritating my gullet a bit) I'll mix a cocodamol and drink it before sleeping... the painkiller will help me fall into a sleep. It's never dreamless; I'll dream of lots of things; having hair, smoking, people who cared for me; foreign lands; happiness. I'll wake up in pain and go to the toilet twice a night, and force some water down my aching throat; the painkillers only dull so much.
I'll wake up each day in quite intense pain; but it'll be another day closer to the end of treatment and the resumption of normal life.
Tom
Tuesday, 9 June 2015
More pills
Sadly, it's now gotten incredibly uncomfortable to swallow if I am without any painkillers. By uncomfortable, I mean that unaided swallowing is almost cryingly painful. I thought it was bad on Sunday night/Monday morning, but last night was just terrible; I kept waking up in dire pain in my throat, all dried out and with swallowing incurring a wince and a yelp pre and post completion.
So, I'm on cocodemol which, as every medicine cabinet afficionado knows, is a rather strong painkiller - codeine mixed with your old pal parecetmol. They're in effervescent tab form so I can swallow them - here they are:
So, I'm on cocodemol which, as every medicine cabinet afficionado knows, is a rather strong painkiller - codeine mixed with your old pal parecetmol. They're in effervescent tab form so I can swallow them - here they are:
I've just downed a couple and am pleased - they seem to be incredibly effective... I almost felt the pain ebbing away by the minute.
Let's hope this holds!
Today was radiotherapy 10/15. Tomorrow is the last Wed ever of cancer treatment - today was the last day where there was at least another week to go of treatment.
We inch ever closer to the end...
Friday, 5 June 2015
more artificial spit
So my week went okay - I'm in the majority of my radiation fractions now (I've had 8/15!) the week is over.
On Tuesday I started to have trouble getting food past my gullet, which slowly kind of got worse until today, where eating is become a mite difficult. The problem is that, although the artificial spit I posted about on Monday has done some sort of a job, it's dried out below that and, now, it's tough to swallow it at all. Soup diet for a while, methinks... trim for summer at least!
Anyway, I told this doctor this on Thursday and got prescribed yet more artificial lubrication for my digestive system, this time in a swallowable gel which is combined with dissolvable aspirin (left) that becomes the appealing mixture you see on the right
Yummy, huh?
So my enjoyment of food is a bit strained now, as a result of all of these bits and pieces. It's not the nicest feeling, having food that won't go down.
Gaviscon city.
So, this weekend, not too much going on, just some r&r and sleeping off the last few days. Hopefully everything won't deteriorate too much next week; just not very far to go now, which is great. Not far until the end!
On Tuesday I started to have trouble getting food past my gullet, which slowly kind of got worse until today, where eating is become a mite difficult. The problem is that, although the artificial spit I posted about on Monday has done some sort of a job, it's dried out below that and, now, it's tough to swallow it at all. Soup diet for a while, methinks... trim for summer at least!
Anyway, I told this doctor this on Thursday and got prescribed yet more artificial lubrication for my digestive system, this time in a swallowable gel which is combined with dissolvable aspirin (left) that becomes the appealing mixture you see on the rightYummy, huh?
So my enjoyment of food is a bit strained now, as a result of all of these bits and pieces. It's not the nicest feeling, having food that won't go down.
Gaviscon city.
So, this weekend, not too much going on, just some r&r and sleeping off the last few days. Hopefully everything won't deteriorate too much next week; just not very far to go now, which is great. Not far until the end!
Monday, 1 June 2015
special mouthwash
So a new week breaks, another 5 rads ahead and I'm still quite tired! I spent the weekend waking up at 11am and going to bed at 11pm, tired despite a long day.
Sadly, I'm going back down to reduced hours at work - I don't want to rush and screw up my recovery. And it's just also not feasible for now. I'm a bit sad, and a bit guilty, as we're really busy + because I do feel like I'm letting people down - yeah it's not like I asked for HL, and yeah I know it's not my fault, but I'm still human and empathetic (yeah, the perfect boyfriend... still single, thanks for asking...) and wish I could do more.
Anyway, my throat is drying out and my saliva has become thick. I went to see the rads nurse today and she said, whilst the thick saliva is nothing they can affect, the drying out is.
Anyway, 4 more rads to go this week (I'm on 4/15 as of today, will be over half way by the end of the week!) and then another sleepy weekend ahead I'm sure
Saturday, 30 May 2015
Total wipeout
Interestingly, there are side effects despite there being no impact upon you during the actual rads treatment. And they're actually, annoyingly, quite tangible (though nothing compared to the nauseated chemo experience, as I keep having to remind myself!)
I slept until 11:30am today. I haven't been able to sleep long for ages - not since I started feeling tired from cancer, not even after chemos. But last night I was so wiped out it was unreal. I could just imagine all of the little cells in my neck and chest frantically dividing and redividing as they dealt with the impact of the the rads.
I wasn't really responsive to my parents talking to me and, unusually for me, I didn't feel like gaming and instead just watched trashy TV until 10, when I went to bed.
I can only imagine the tiredness getting worse! It's okay, though - part of it is definitely the fact that it was my first full(ish) week back at work on top of the rads, which is, in itself, fairly tiring... I guess I used to sleep quite late on Saturdays pre-cancer too (though I was, invariably, quite hungover) so I'd suppose it's a case of plus ça change, plus c'est la même chose...
Other side effects include a feeling of very slight sunburn on my neck and chest and, also, a weird salivary situation. My mouth feels pretty dry (necessitating a lot of ice cream and fruit pastilles ice lollies) the whole time, and, when I'm digesting food, the spit feels kind of thick. Very weird.
But, all in all, it's very manageable. 12 days to go until I'm done treatment.
I slept until 11:30am today. I haven't been able to sleep long for ages - not since I started feeling tired from cancer, not even after chemos. But last night I was so wiped out it was unreal. I could just imagine all of the little cells in my neck and chest frantically dividing and redividing as they dealt with the impact of the the rads.
I wasn't really responsive to my parents talking to me and, unusually for me, I didn't feel like gaming and instead just watched trashy TV until 10, when I went to bed.
I can only imagine the tiredness getting worse! It's okay, though - part of it is definitely the fact that it was my first full(ish) week back at work on top of the rads, which is, in itself, fairly tiring... I guess I used to sleep quite late on Saturdays pre-cancer too (though I was, invariably, quite hungover) so I'd suppose it's a case of plus ça change, plus c'est la même chose...
Other side effects include a feeling of very slight sunburn on my neck and chest and, also, a weird salivary situation. My mouth feels pretty dry (necessitating a lot of ice cream and fruit pastilles ice lollies) the whole time, and, when I'm digesting food, the spit feels kind of thick. Very weird.
But, all in all, it's very manageable. 12 days to go until I'm done treatment.
Wednesday, 27 May 2015
Zap One
No, it doesn't hurt at all. It's just like having a scan - except you're in a green face mask which is tightly clamped to your cranium.
It's called Saturn (they're all named after planets) and it's the machine that delivered the radio waves to my affected areas. You can see my mask perched on the end of the bed, too.
I was positioned, repositioned, tweaked and moved slightly to the left and right for what felt like ages - all in all, the treatment itself actually took about 5 minutes, but they had to keep moving me around to ensure I was at the right angle to be hit by the beams in the affected areas. As I looked up, this was the amazing view I had:
And yeah, that was it - it felt like having a scan taken, as I've said. I didn't feel anything at the time, and I don't really feel anything right now either.
In any case, the radiographer explained to me that I'd get some soreness on the neck, bit like sunburn, and probably some dryness of the throat and perhaps some minor difficulties swallowing. I've been given the cream on the right to lather and soothe the skin, twice a day.
And yeah, that's it. I walked out, and got on the tube as if I'd just had a normal scan. Perfecto.
Same again tomorrow, for the next 15 days - hopefully it'll be as quick and painless as that next time around!?
T
I basically just took my shirt off (don't all scream at once, girls) and was led into a room which housed this contraption:
 |
| Saturn the radio waver |
I was positioned, repositioned, tweaked and moved slightly to the left and right for what felt like ages - all in all, the treatment itself actually took about 5 minutes, but they had to keep moving me around to ensure I was at the right angle to be hit by the beams in the affected areas. As I looked up, this was the amazing view I had:
 |
| You can see my topless reflection, ladies |
 |
| acquiescent aqueous cream |
In any case, the radiographer explained to me that I'd get some soreness on the neck, bit like sunburn, and probably some dryness of the throat and perhaps some minor difficulties swallowing. I've been given the cream on the right to lather and soothe the skin, twice a day.
And yeah, that's it. I walked out, and got on the tube as if I'd just had a normal scan. Perfecto.
Same again tomorrow, for the next 15 days - hopefully it'll be as quick and painless as that next time around!?
T
Tuesday, 26 May 2015
the one before the radiotherapy
So, I get zapped tomorrow. It's a bit weird to think that I'm on the eve of starting another treatment, on the precipice of one further unknown. I don't know - I hope that it is, as advertised, painless, with minimal side effects compared to the chemo. All I'm doing is thinking that yes, it'll be okay - I've lived through the worst. This has got to be it. I wish I could write more, and more eloquently, but the fact remains that all I want is for all of this to be over now.
I have 3 weeks' worth of radiotherapy coming up now. We have 15 days of it; no weekends, just weekdays. Every day for 10 minutes.
I hear I won't experience anything too bad until the very end of the 'fractions', when I might have a bit of a tiredness, maybe some dryness of the mouth as the zaps are near my salivary glands.
16th June. The last day of my cancer treatment.
I hope so much that this is it. I really, really do.
I have 3 weeks' worth of radiotherapy coming up now. We have 15 days of it; no weekends, just weekdays. Every day for 10 minutes.
I hear I won't experience anything too bad until the very end of the 'fractions', when I might have a bit of a tiredness, maybe some dryness of the mouth as the zaps are near my salivary glands.
16th June. The last day of my cancer treatment.
I hope so much that this is it. I really, really do.
Monday, 25 May 2015
in the name of science
Soo it happened
 |
| yay |
I had some beer and some wine. I ate some cheese. We roasted some potatoes and some pork.
And I didn't itch uncontrollably!
No pruritus. Nothing.
I don't have it! Itching all over was the major telltale sign of HL for me!
And it's gone! All gone!
I don't have Hodgkin's anymore! I actually don't think I do!
Of course, I kept drinking in the name of science...
But it's all gone. I genuinely think it has.
Deep breaths.
A new day dawns.
T
Thursday, 21 May 2015
the first non tense thursday
Today is the first Thursday I haven't been tense on since I can remember.
16 weeks ago I was scared and massively apprehensive. I was about to go through chemo treatment for the first time. I had hair. I had muscle. I had cancer.
I could barely sleep the night before - I finally peeled off through exhaustion around 4, having worried myself to oblivion about what would happen to me. I knew I had to do it, I kept telling myself so; but the apprehension of the unknown is a scary thing.
I went through chemo, and felt the sharp pain of the needle, what it was like to be attached to a drip for real, the cold fluidic cytotoxic drugs slowly seeping into my veins; even now, it makes me shudder. I tasted horrendous chemicals at the back of my throat. I felt my veins burn at the arms. I felt what it was like to begin to realise and be overwhelmed by a rampant nausea that turned the pit of my stomach - I threw up everywhere after the taxi ride home. I hadn't felt anywhere near as bad since before. All I could do was lay there and hope to fall into a fitful sleep.
I was scarred by what happened.
And so it was that every 2 weeks, on the Thursday before the Friday chemos, I'd begin to go through the motions. I'd leave work, saying my goodbyes, feeling the pit of my stomach start to churn. I'd make a phonecall to my nan to hear her tell me it's be okay - one more down. But I couldn't ever buy it - the apprehension often felt like a great wave crashing over my once-again-reformed self. And at night I didn't sleep well, knowing what was to come.
And it would be the same. I would have good days, and bad ones. But it was always the same. Less throwing up, though.
I can't believe I did that 8 times. I still can't, if I really think about it. It was so hard, and I found a strength within me I never realised was there. Everything I've been through doesn't feel like anything compared to it. I was so lucky to be in remission so quick. I'm lucky that I don't have much treatment left.
If I could tell myself from that time anything, I wouldn't know. You know why? Because nothing I could have said would have prepared me, or softened the blow. It was a path to be taken alone: with supporters by the wayside, massively appreciated, but alone.
Maybe I would say you'll make it. Time marches on; tempus edax rerum, time; the devourer of all things. I'd get to the end, it'd just be a slog. A big, nihilistic trudge. But you'll get there. There's no rhyme or reason to it - nor, indeed, to anything associated with cancer. But you'll get there.
In sum: I'm looking forward to not going to chemo tomorrow. Instead, I'll enjoy the sunshine.
T
16 weeks ago I was scared and massively apprehensive. I was about to go through chemo treatment for the first time. I had hair. I had muscle. I had cancer.
I could barely sleep the night before - I finally peeled off through exhaustion around 4, having worried myself to oblivion about what would happen to me. I knew I had to do it, I kept telling myself so; but the apprehension of the unknown is a scary thing.
I went through chemo, and felt the sharp pain of the needle, what it was like to be attached to a drip for real, the cold fluidic cytotoxic drugs slowly seeping into my veins; even now, it makes me shudder. I tasted horrendous chemicals at the back of my throat. I felt my veins burn at the arms. I felt what it was like to begin to realise and be overwhelmed by a rampant nausea that turned the pit of my stomach - I threw up everywhere after the taxi ride home. I hadn't felt anywhere near as bad since before. All I could do was lay there and hope to fall into a fitful sleep.
I was scarred by what happened.
And so it was that every 2 weeks, on the Thursday before the Friday chemos, I'd begin to go through the motions. I'd leave work, saying my goodbyes, feeling the pit of my stomach start to churn. I'd make a phonecall to my nan to hear her tell me it's be okay - one more down. But I couldn't ever buy it - the apprehension often felt like a great wave crashing over my once-again-reformed self. And at night I didn't sleep well, knowing what was to come.
And it would be the same. I would have good days, and bad ones. But it was always the same. Less throwing up, though.
I can't believe I did that 8 times. I still can't, if I really think about it. It was so hard, and I found a strength within me I never realised was there. Everything I've been through doesn't feel like anything compared to it. I was so lucky to be in remission so quick. I'm lucky that I don't have much treatment left.
If I could tell myself from that time anything, I wouldn't know. You know why? Because nothing I could have said would have prepared me, or softened the blow. It was a path to be taken alone: with supporters by the wayside, massively appreciated, but alone.
Maybe I would say you'll make it. Time marches on; tempus edax rerum, time; the devourer of all things. I'd get to the end, it'd just be a slog. A big, nihilistic trudge. But you'll get there. There's no rhyme or reason to it - nor, indeed, to anything associated with cancer. But you'll get there.
In sum: I'm looking forward to not going to chemo tomorrow. Instead, I'll enjoy the sunshine.
T
Wednesday, 20 May 2015
onwards
A bit of a lull in writing recently, I know. But, as the old adage goes, no news is good news.
It's been a fairly uneventful few days; I've just been recovering from the chemo and getting on with things. I feel a lot better than usual, which is the good news; almost definitely because the "threat" of another chemo sesh coming up has been alleviated for good now.
Consequently, I'm looking forward to seeing what happens to me in terms of my recovery after Friday; it'll be the first 2 weeks in what feels like bloody ages (almost 5 months now!) which is not bookended by cytotoxic drugs being pumped through my system.
On that, I went / tried to go for a run on Sunday and it amazed me just how much I've lost my physical fitness now. I mean, I shouldn't be too surprised, given what my body's had to deal with, but still; I was halfway down the road and my lungs began to feel like I'd been on 30-a-day for the last few months... lovely! I guess I'll build it slowly as time allows.
Other things; went to clinic today - nothing of importance to note except that my final PET scan is on the week commencing 6th September; I'm booked back into clinic on the 16th September to hear the (what she said should be expected to be good) results. I'll try to forget about it now, lest the scanxiety begin.
Not much else planned - I'll write again this time next week once I've had my maiden radiotherapy sesh
It's been a fairly uneventful few days; I've just been recovering from the chemo and getting on with things. I feel a lot better than usual, which is the good news; almost definitely because the "threat" of another chemo sesh coming up has been alleviated for good now.
Consequently, I'm looking forward to seeing what happens to me in terms of my recovery after Friday; it'll be the first 2 weeks in what feels like bloody ages (almost 5 months now!) which is not bookended by cytotoxic drugs being pumped through my system.
On that, I went / tried to go for a run on Sunday and it amazed me just how much I've lost my physical fitness now. I mean, I shouldn't be too surprised, given what my body's had to deal with, but still; I was halfway down the road and my lungs began to feel like I'd been on 30-a-day for the last few months... lovely! I guess I'll build it slowly as time allows.
Other things; went to clinic today - nothing of importance to note except that my final PET scan is on the week commencing 6th September; I'm booked back into clinic on the 16th September to hear the (what she said should be expected to be good) results. I'll try to forget about it now, lest the scanxiety begin.
Not much else planned - I'll write again this time next week once I've had my maiden radiotherapy sesh
Wednesday, 13 May 2015
Casting call
I went for pre-radiotherapy planning today!
It was very interesting; they basically make a cast of your face out of some mesh plastic, and mark up the places (based on another CT scan) where the radio beams will be aimed.
Here's a pic of me being fitted with the mesh (please ignore the obvious fat / lack of muscle... blame it on the chemo) and what it looked like afterward:
 |
| the mask |
 |
| live long and prosper |
Anyway, I had that and a scan. Prepping for the scan involved a cannula for the dye to be injected into me... oh boy. I had to get Dad out very quickly to get some chewing gum to get rid of the taste of the saline (he ran out quick - he'd seem me proj vom enough last Friday!)
Unfortunately, as I told the Doctor but she did it anyway, the veins in my right are as shot as the left... she couldn't advance one of the cannulas, and the one she actually did get in was in my hand.
Ugh. So painful. So bruised. Far too soon - the smell of hospitals makes me feel sick still.
The scan was straighforward, though.
Radiotherapy begins on the 27th May and will run until the 16th June. I'll be there for 10-15 mins per day, and it'll be painless, so they say :). So not long til the end of treatment at all!!
Today is the last day of anti-sickness pills! My last domperidone will be tonight!
Write soon!
Monday, 11 May 2015
my last ondansetron
... was today
I'm down to just ONE anti-sickness pill now - 2 more days of that until I have just the anti-congestant... and one week or so until I have NO MORE PILLS!
Wow, it's all finally coming to an end.
In general, I'm tired but feeling okay. Trying desperately to keep my mind busy, alongside keeping my taste buds busy too - this time's yuckmouth is unfortunately too close to what I tasted in hospital on Friday.
I must've thrown up at least 10 times, all whilst dealing with the side effects of the chemo being pumped into me. It was one of the hardest days of my life for sure. I guess, if you wanted an ending, it was a grisly one.. but it felt like it was an end. A crucible of an apt ending.
I think I'll take a couple of weeks off work to get my head together. I've started to think about life after chemo now the shackles of the chemo cycles has been lifted... more on this later on.
The next hospital appointment is on Wednesday, where we'll be planning my radiotherapy and, I'd guess, getting the equipment for it. By equipment, I mean they will need to have a plastic mould of my upper body with only tiny holes penetrating it at which the radiation will be aimed... I'd guess the rest would deflect it. I may even need tattoos apparently to pinpoint exactly where they'll be aiming the radiotherapy... we'll have to see after Wednesday. I'll doubtless need another CT scan, too.
On Thursday I am going to my GP to get some crazy dental toothpaste for radiotherapy patients. I went to see the dentists last week in prep for the radiotherapy (they passed me dentally fit to be zapped!) but said I needed some special toothpaste for poor chemo gums.
I'll have more info on Wednesday
I'm down to just ONE anti-sickness pill now - 2 more days of that until I have just the anti-congestant... and one week or so until I have NO MORE PILLS!
Wow, it's all finally coming to an end.
In general, I'm tired but feeling okay. Trying desperately to keep my mind busy, alongside keeping my taste buds busy too - this time's yuckmouth is unfortunately too close to what I tasted in hospital on Friday.
I must've thrown up at least 10 times, all whilst dealing with the side effects of the chemo being pumped into me. It was one of the hardest days of my life for sure. I guess, if you wanted an ending, it was a grisly one.. but it felt like it was an end. A crucible of an apt ending.
I think I'll take a couple of weeks off work to get my head together. I've started to think about life after chemo now the shackles of the chemo cycles has been lifted... more on this later on.
The next hospital appointment is on Wednesday, where we'll be planning my radiotherapy and, I'd guess, getting the equipment for it. By equipment, I mean they will need to have a plastic mould of my upper body with only tiny holes penetrating it at which the radiation will be aimed... I'd guess the rest would deflect it. I may even need tattoos apparently to pinpoint exactly where they'll be aiming the radiotherapy... we'll have to see after Wednesday. I'll doubtless need another CT scan, too.
On Thursday I am going to my GP to get some crazy dental toothpaste for radiotherapy patients. I went to see the dentists last week in prep for the radiotherapy (they passed me dentally fit to be zapped!) but said I needed some special toothpaste for poor chemo gums.
I'll have more info on Wednesday
Saturday, 9 May 2015
I did it!
Well, I did it. No more chemo!!!!
It was the worst one ever. Oh my, do I love irony. I was keeping it together but completely lost it at the smell of the tape around my cannula and the taste of the domperidone. Cue about 10 voms throughout the chemo :( I am normally in and out by 3... Yest I was in til 8 cos of how horrifically nauseated I was. Most of it was mental rather than physical... As I say, v ironic that I only buckled mentally on the last sesh
But its day 2 now and I'm slowly inebriating myself on anti emetics.
And, suffice to say, it's tinged with victory.
I did it!
I'll write soon
Tom
ps Hi Nan and Auntie Jean!
Thursday, 7 May 2015
100 days later
My hair is thinned. My veins still ache. My muscle has diminished to nothingness.
But my mentality endured.
I've almost made it
Tomorrow will be 100 days since chemo began on the 29th January 2015.
And it feels like its been really long time.
I never believed I'd be the one going through this kind of thing, much less actually experience it. I never thought I'd get used to feeling that sharp spike of pain as the cannula hits my arm. The cold chill as the drugs smash through my cracking veins. The flood of relief as the drip is disconnected. The rush of nausea as I stand up for the first time, with cytotoxic drugs sloshing around in my veins. The nights of near delirious agony, clutching my stomach and telling myself it's one more down, Tom, it's one more down.
And, now, I can't believe it's (almost) all over.
Obviously at the moment I don't know how I will feel, on the eve of the last infusion; I'm imagining massive relief, alongside the inevitable nausea (the apprehension for which is turning my stomach even now as I write this). I really hope with everything I have that I have beaten this thing. That's that. Done for good. And, hopefully, life is there for me to reclaim.
I've been thinking a bit recently about who post-cancer-boy Tom will be. It's a bit strange, actually; I don't think it could be said that I'm an apt subject for one of those Hollywood-esque narratives wherein an originally obnoxious and self-centred boy turns into caring sensitive man via pain and adversity. I was already quite empathetic and not particularly self centred. Perhaps, behaviourally, it will have made a change. But, mentally, I think it might have just ossified things I already knew about myself, alongside shortening my shrift for things in life that people care about that I'd always kind of suspected were meaningless.
But let's see. I have one more infusion to go, 36 hours til it's all over. I can't wait for that final needle to be removed from my vein.
Bye chemo. It's been educational but, seriously, I will not be sorry if I never see you again.
But my mentality endured.
 |
| at the end of chemo |
I've almost made it
Tomorrow will be 100 days since chemo began on the 29th January 2015.
And it feels like its been really long time.
I never believed I'd be the one going through this kind of thing, much less actually experience it. I never thought I'd get used to feeling that sharp spike of pain as the cannula hits my arm. The cold chill as the drugs smash through my cracking veins. The flood of relief as the drip is disconnected. The rush of nausea as I stand up for the first time, with cytotoxic drugs sloshing around in my veins. The nights of near delirious agony, clutching my stomach and telling myself it's one more down, Tom, it's one more down.
And, now, I can't believe it's (almost) all over.
Obviously at the moment I don't know how I will feel, on the eve of the last infusion; I'm imagining massive relief, alongside the inevitable nausea (the apprehension for which is turning my stomach even now as I write this). I really hope with everything I have that I have beaten this thing. That's that. Done for good. And, hopefully, life is there for me to reclaim.
I've been thinking a bit recently about who post-cancer-boy Tom will be. It's a bit strange, actually; I don't think it could be said that I'm an apt subject for one of those Hollywood-esque narratives wherein an originally obnoxious and self-centred boy turns into caring sensitive man via pain and adversity. I was already quite empathetic and not particularly self centred. Perhaps, behaviourally, it will have made a change. But, mentally, I think it might have just ossified things I already knew about myself, alongside shortening my shrift for things in life that people care about that I'd always kind of suspected were meaningless.
But let's see. I have one more infusion to go, 36 hours til it's all over. I can't wait for that final needle to be removed from my vein.
Bye chemo. It's been educational but, seriously, I will not be sorry if I never see you again.
Tuesday, 28 April 2015
radiology
I saw the consultant radiologist today, who said that I'm basically going to start getting zapped on the day after the late May bank hol for 3 weeks, concluding I guess around mid May... unbelievably, I'll hopefully be finished with treatment by mid June!!! OH EM GEE.
Radiology is, as the consultant put it, "not as bad as chemo, bluntly" - the key side effects sound like tiredness (I'm already knackered so this holds v little fear), skin irritation and a sore mouth/throat which sounds tantamount to a liquid diet for a few weeks to me.
The treatment will be Mon-Fri for 3 weeks, so 15 "fractions" of treatment. I will need a dental check up and also another scan (CT) beforehand. I will also need to have a mesh mould made of my face prior to treatment (which I'm obviously keeping as some quasi artistic item)
The treatment will be Mon-Fri for 3 weeks, so 15 "fractions" of treatment. I will need a dental check up and also another scan (CT) beforehand. I will also need to have a mesh mould made of my face prior to treatment (which I'm obviously keeping as some quasi artistic item)
The radiotherapy is going to be targeted at both sides of my neck and right in the middle of the chest; the three main sites. It's not going to be a huge amount by any means, so I was told, but it'll still have an impact. The neck will get a bit irritated (see above). But the chest is the bigger impact, which is a little permanent - there's going to be minor scarring of the lungs which will be irreversible in the area to be zapped. But, they told me, it won't be noticeable
Anyway, it's sad, but, as the consultant said, they think this is the best source of treatment for me and most likely to knock the HL on head first time round.
So yeah, I've signed up, basically.
6 weeks to go until I am done with cancer treatment. Hopefully forever. I'm really looking forward to it.
Sunday, 26 April 2015
empathy for marathoners
I'm doing alright following Friday's high-temp incident. I'm quite tired in general, and am feeling a little bit fed up about everything. I couldn't sleep last night due to loud rain, and was woken up by people putting stuff onto the street this morning. Either way, I'm still a little more fed up than usual with my circumstances. However, I reckon it's to be expected to hit 'the wall' at some point
Seguing nicely on this metaphor, just a quick one to say that my balcony overlooked the London marathon today, and it was amazing to see the throngs of people running down the street (of course, it's kind of littered with rubbish now!) and also to listen to the wellwishers who were out to cheer on those running. I don't know whether people were there for someone in particular or just for the spectacle, but the amount of people with loudspeakers was quite cool, alongside the amount of well meaning but still semi-sexist language ("come on dahlin'" / "you can do it luv" / "keep goin' gawjus") being espoused by one especially audible - and visible - gentleman.
I thought, reflecting on people working hard physically below, that marathons and cancer treatment have a lot in common. You start with a smile, if a little trepidation. You endure countless ups and downs; moments of encouragement interspersed with occasional seconds of doubt. There are milestones; 1/4 through; 1/3; 1/2; 2/3; 3/4... 7/8. And, as light begins to shimmer from the end of the figurative tunnel, you paradoxically begin to feel whacked, yet know you can do it.
I'm almost there. I'm so tired, mentally and physically, but I know I can make it over the line and be better for it. Much like the marathoners.
T
 |
| i'm one of these. figuratively |
Seguing nicely on this metaphor, just a quick one to say that my balcony overlooked the London marathon today, and it was amazing to see the throngs of people running down the street (of course, it's kind of littered with rubbish now!) and also to listen to the wellwishers who were out to cheer on those running. I don't know whether people were there for someone in particular or just for the spectacle, but the amount of people with loudspeakers was quite cool, alongside the amount of well meaning but still semi-sexist language ("come on dahlin'" / "you can do it luv" / "keep goin' gawjus") being espoused by one especially audible - and visible - gentleman.
I thought, reflecting on people working hard physically below, that marathons and cancer treatment have a lot in common. You start with a smile, if a little trepidation. You endure countless ups and downs; moments of encouragement interspersed with occasional seconds of doubt. There are milestones; 1/4 through; 1/3; 1/2; 2/3; 3/4... 7/8. And, as light begins to shimmer from the end of the figurative tunnel, you paradoxically begin to feel whacked, yet know you can do it.
I'm almost there. I'm so tired, mentally and physically, but I know I can make it over the line and be better for it. Much like the marathoners.
T
Saturday, 25 April 2015
ABVD - 7/8
1 more to go!!
Yesterday was the fastest and least sickness-inducing yet. I was having the drugs by 11:50 and was done by about 3, with not really too much nausea.
Unfortunately, we did discover yesterday that the vein in my right arm is shot to pieces (it wasn't bleeding as profusely as it should), meaning that my poor left had to be used for the FIFTH time. It was really quite painful getting the cannula in because the vein is really hardened now through overuse, and it took quite a while for it to acclimatise to having a needle in it (i.e. it was painful for about half an hour before I felt able to continue with the chemo).
Yesterday night, too, we had a mini crisis as my temperature soared to the heady heights of 37.7 degrees centigrade at 8:30pm - the highest I'd ever seen it on my little digithermometer. The chemo hotline was rung, though, and they said it was a fairly common reaction; I also am not neutropenic (I have sufficient "fighters" in my blood at the moment... surely dying off as the chemo washes around my system) so they weren't as worried about me as they would have been otherwise.
An anxious wait ensued as we made plans to potentially go to A+E and be admitted for the first time. I was getting quite stressed between 8:30 and the next temperature at 9:30, I have to admit, because I was not really looking forward to more hospital, more prickly needles, more stuff in my veins.
Fortunately, by 9:30 my temperature was down to 37 on the dot, and, finally, at 10:30, down to 36.6.... relieved, I passed out. Only to awaken again at 12, 3, 5 and 7 to pee... the amount of water I'd drunk and also had pumped through me in saline form in the hospital is rather voluminous.
I've taken 4 pills already today. Ugh. But anyway, I don't feel too awful actually. Mouth is a bit yucky and I'm a bit fatigued, but, by now, I know that's to be expected. The overriding mantra is that there's LESS THAN TWO WEEKS TIL THE END OF CHEMO. I can't wait.
I'm seeing the radiotherapy specialist on Tuesday to plan out that stage of my treatment. I'll update then, if not before.
T
Yesterday was the fastest and least sickness-inducing yet. I was having the drugs by 11:50 and was done by about 3, with not really too much nausea.
 |
| poor right hand :( |
Yesterday night, too, we had a mini crisis as my temperature soared to the heady heights of 37.7 degrees centigrade at 8:30pm - the highest I'd ever seen it on my little digithermometer. The chemo hotline was rung, though, and they said it was a fairly common reaction; I also am not neutropenic (I have sufficient "fighters" in my blood at the moment... surely dying off as the chemo washes around my system) so they weren't as worried about me as they would have been otherwise.
An anxious wait ensued as we made plans to potentially go to A+E and be admitted for the first time. I was getting quite stressed between 8:30 and the next temperature at 9:30, I have to admit, because I was not really looking forward to more hospital, more prickly needles, more stuff in my veins.
Fortunately, by 9:30 my temperature was down to 37 on the dot, and, finally, at 10:30, down to 36.6.... relieved, I passed out. Only to awaken again at 12, 3, 5 and 7 to pee... the amount of water I'd drunk and also had pumped through me in saline form in the hospital is rather voluminous.
I've taken 4 pills already today. Ugh. But anyway, I don't feel too awful actually. Mouth is a bit yucky and I'm a bit fatigued, but, by now, I know that's to be expected. The overriding mantra is that there's LESS THAN TWO WEEKS TIL THE END OF CHEMO. I can't wait.
I'm seeing the radiotherapy specialist on Tuesday to plan out that stage of my treatment. I'll update then, if not before.
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