ABVD - 1a (1/8)

Continued from the last post, after I, aching a bit, went to sit down to have some lunch I was called in again for my first round of chemo.

I can't deny I was feeling very nervous. I didn't know what to expect, apart from that my body - maybe - wouldn't really be the same for a while.

Anyway, I was led to a chair with a drip next to it, and the customary cannula was - after an initial miss in the vein by my wrist - inserted into my lower forearm -->

Whilst you're in the chair, having the drugs, you're free to do whatever you want, really. Read, watch stuff on your tablet, do whatever you want. You'll just have to wheel your drip around with you!

After being "flushed" with saline solution, and taken some anti-emetic (anti sickness) pills, it was time to get going with the ABVD. ABVD is named as such because it's 4 different drugs which I'll get every time, the combination of which is designed to, basically, smash the cancer out of me :)

First out was D (dacarbazine), which was a gloopy red fluid reminiscent of ribena that was slowly injected into my arm. Doesn't that look nice (left)? It lasted about 30-35 minutes and took some time to get through me, but I had a nice chat with my cancer nurse and she was lovely. It was really slowly injected - if it was done faster, it began to be a bit uncomfortable within my veins. It also made my wee red, which was fun!

After that was done, V (vinblastine) came out (right) - a little bag dripped into me, which lasted about 10 minutes and was relatively painless. After that, I did feel a little bit light headed after that but felt like I'd keep going!

Third was B (bleomycin), which was a less viscous than the D (left), was injected into me over the course of 10 minutes. Fairly simple.

After that, was the long one, which was A (adriamycin).  It took about 2 hours as it was a massive bag of drugs (right) and had to be dripped into me very, very slowly because it hurt if they sped up the administration within the vein.

But there we go. Actually fairly painless.

After that, I left the hospital in a taxi. I'd entered at 9am left about 6pm.

Straight away, in the car, I felt incredibly nauseous (despite taking some domperidon anti-emetics... hereafter called dom perignon of course) and managed to hold it in, much to the cab driver's clear relief, until we got back to the kerb by my flat. Up the stairs and straight to bed, to roll around in nauseous splendour.

I spent last night feeling hyper nauseous and visiting the toilet a few times. Not lovely, but it kind of stopped after about 9pm when I passed out - if I could describe it, it felt just like gastroenteritis (winter flu) in my system.

Today, I feel okay. Took my dom perignon and feel okay, like a bit drowsy but apart from that, I'm surprisingly less out of it than I thought I would be. I really hope this is the extent of the after effects (apart from my hair falling out!).

Over the next few days, I hope the side effects will fade and not expand. My parents are staying with me just to keep an eye on me, but if this is all the effects of what's going to happen, I can live with this. I can really live with it.

The key point is: this is killing the cancer. And I will survive. It all means I'm getting fixed, and that's what I keep telling myself... even whilst cradling the toilet bowl :)

Bone Marrow biopsy - DO NOT READ IF SQUEAMISH

Hello

I couldn't write last night because of the impact of all these crazy drugs filtering through my system! On a bit more of a level now so here's what happened.

I've had to split what happened yesterday over 2 posts so it's not monstrous. This bit is also a bit graphic so I thought best to keep this one separate. Here goes.

Yesterday, I arrived at the hospital about 9:45 and got seen right away forrrrrr.... The Bone Marrow Biopsy!

This was not pleasant. Possibly, the worst procedure I've had so far - painful, not, like, on the limit of pain, but still pretty bad.

The basic premise was that I was curled up in the foetal position whilst they inserted a couple of big needles in me and sucked out some blood and some marrow, under heavy local anaesthetic.

If that doesn't make you feel bad enough, here's the implements they used (which were hurriedly hidden from me by the doctor when he walked in);

The doc put some local anaesthetic on and kept prodding me with the needle to see if it hurt or not - it really stung when the anaesthetic was injected into me, but quickly went numb and I couldn't feel the needle any more.

Unfortunately, the actual (two part) procedure rather hurt. The first bit (blood) was okay - imagine a poke in the back that hurts a little bit. The second bit (marrow extraction) was not okay at all. It was like the entire bit of  bone on my back, around by my posterior, was pushed forward painfully in a jerking motion as the needle burrowed in me and sucked out some marrow. I was grabbing the pillow and turning the air pretty blue by this point.

If you've made it this far, well done. Almost there. As a reward, I'm guessing you want to see a picture of the results! So, here we are:

Looks like smoked salmon, no? In fact, it's the blood from my bones extracted from my back.

And...

Yup. That's a bit of my marrow.

All in all, a bit of a disgusting and fairly painful procedure. And my back still aches now.

Next post is about ABVD 1a, which also happened yesterday.

T

Cometh the hour

That's it. The last day before I'm chemoed up and neutropenic.

I had a nice day. I had a nice chat with people at work (prompted by some big Work News), lunch with probably my favourite colleague (don't tell him I said that, though), my meeting with HR (which was really nice) and, finally, a dinner with my friend and a couple of beers. I went nuts - Korean for lunch and Thai for tea. Yummy.

When the time came to leave, I felt genuinely sad and almost cried on Long Acre on the way to Covvy G. We often complain about work and fear getting up in the morning and going in, but all of this has thrown everything into sharp relief. It was almost like I didn't want my day to end - I certainly had to tear myself away from my friend.

But the truth is this has to end now. I have to start the process of recovery and, sure, this has been a fortuitously painless cancer but the truth also is that I'm currently dying with it attached to me. That has to end. I have to beat it, and to beat it I need strong drugs coupled with a strong mind.

I've been really worried about chemotherapy, as you might expect, not because of what it's doing but because of the side effects. I've talked to lots of lovely people and the overriding conclusion I've drawn is that it simply effects people differently - people have reported varying degrees of incapacitation and varying side effects. The truth is, I just don't know what's going to happen to me tomorrow and over the weekend. And this is strange.

At 25, you've gotten many, many firsts out of the way. First day at school. First love. First sex. First heartbreak. First day of university. The next for most people is their wedding, or first child. For me, it's this. It really highlights the fact that, with no informed experience to fall back on, I'm just as scared as I was when I was going to Big School for the first time. But, equally, I know that I will experience it and come out the other side better for it. I'm simply one of the unfortunate few who will need to go through this.

So, here we are. I've planned with work - dependent on how I take the chemo - to go back in next Friday and work, in effect, every other week. That'll give me some normality (I spoke about the importance of this in a previous blog) and also the human contact that I will need.

It won't be easy. But it's essential. And that's what I'll keep telling myself right up until the moment the chems hit the cannula tomorrow.

I'm also having the bone marrow biopsy tomorrow. I'll update when I can on how I'm feeling and doing as soon as I can.

And finally - as this is a journal - I think I need a pre-chemo selfie of the main visible area of impact so I can chart its decline over the next few months. Which will also see me reclaim my jawline. Which is very important in my obvious future career as a Eurasian model (joking... sort of... please sign me up if you're reading this and someone who can hook me up ;)):

Yep, that's me, in my bathroom, the day before chemotherapy started (Thurs 29 Jan 2015). Model scouts: it's my "bad side". But you can see the crick in my neck where the main cluster of nodes are lumped up, and where my jawline has been lost due to the size of them. Can't wait for this to go down over time.

I might not be able to write tomorrow / over the weekend, but, if I can, I will. 

This is the start of Tom 2.0. When the sickness ends and my cure begins. It won't be pretty, and I am not pretty, and I won't be pretty, but it'll get me better. And that is all I want in the world.

Onwards. Upwards.

Tom

Interesting research results

Another quick one.

I was stumbling around the internet this afternoon (when I should've been working - sorry Company) and, on the Lymphoma association's website, found this!:

[Source: Lymphoma association. Link to PDF here]

This is a booklet for kids going through HL (bless them all... dear me), but the nominative determinism just made it something I had to put on this blog! A little Asian (in the US sense) kid, too! What are the chances!? (okay, Tom is a common name and I'm sure there are other Asian people called Tom... but seriously!) I was just like WHAAAT!

Additionally, here's the adult version of this booklet (which I've just received) telling me what to expect, which is full of information and written in a clear, accessible way for people like me to know what's going on:

[there is a digital copy of this, too, again via the venerable Lymphoma association, accessible here]

Without being overly political, it's just astounding that this kind of support exists in the real world. My frequent use of Macmillan - through which I've met (or, rather, electronically met... e-met?) has also been so useful and helpful. I definitely need to do something to support these organisations when I'm cured. It's just incredible how much people do for other people without money tainting the scene (infer from that what you will on my views on the NHS ;))

I'll update the blog tomorrow on practical matters (I have my absence management meeting with my company's human resources dept tomorrow) and also some thoughts before I begin treatment on Friday.

T

Lung function

Just a quick note to say that I had my lung function test today and it all came back normal! Yay!

I had to breathe into a bag attached to a machine, basically. I could see my breathing being measured on a little graph in front of me, which was interesting. I then had to do this exercise when I emptied my lungs, breathed in hard then held it for around 9 seconds. I failed the first time because I got a bit anxious about doing it right and, promptly, got it completely wrong. Fine after the second time though, and all normal readings. 

He said that there was 102% of predicted haemoglobin in my breath (sorry medical readers, I'm a layman and just assumed that was good!) and other tests were above the standard so I'm super happy with that :)

I had a nice chat with the guy, too, who mentioned about the amazing prognosis and also had yet another anecdote about a relative who had gotten through Hodgkin :). 

Another fertility appointment tomorrow, then it's all on to Friday.

T

The last weekend before treatment

On Friday night I got my letter. It's the letter from the haematologist to the GP which explains what's happened to me, and it does so in cold, clinical detail.

The CT scan, it said, confirmed nodes ranging from 2.3cm in diameter in my neck to enlarged nodes up to 4cm (!) in diameter in my chest. However, there was no evidence of the disease below the diaphragm.

All in all, it says, I have features of "classical Hodgkin lymphoma, nodular sclerosis subtype". Okay. Deep breaths.

Now, of course, I already knew all this. I'd been told it and it had percolated around in my head a lot. But seeing it in black and white somehow brought it all home, made it more real somehow. My diagnosis didn't exist in the ether of speech any longer, but was documented, recorded and real.

I'm really lucky my cousin was here, otherwise I think I would have broken down. But I'm so lucky I have people like him, playing through an awful game of FIFA with me and talking about random nonsense to help the rawness siphon off a little bit.

After that I had a nice weekend, motivated by trying to move my headspace away from cancer as far as possible. And it went rather well actually. The last one pre-treatment and pre-hardcore chems pumping through my veins for a little while. But the last one of being an untreated patient and one before I started to get better.

At the risk of repeating myself from the last post - most of these have been in similar territory - I'm really trying to focus on the treatment now, how I'll react to it, and how I'll come through it. It's the first step to the light at the end of the tunnel - there will be some more moments like the one I describe above, I'm sure, but I'm sure too there will be happiness and hope. Just like normal life, only without the c-word looming over everything I do and plan to do. I guess I'm seeing it at the moment as a frustration rather than a source of fear - just f*** off so I can get on with my life, I often think.
Can't decide whether that's healthy or not... but I'd guess it probably is!

Anyway, this week I have to go to fertility tomorrow and then go to have my lungs tested before treatment, too, because one of the drugs in ABVD - think it's the B - can cause fibrosis of the lungs, meaning they want a baseline in case I get a bit breathless. Shouldn't be too bad.

And Friday is treatment 1/8.

Obviously, I'll write about how it all goes, alongside perhaps some other useless musings about how I'm doing.

T

On independence

A far better day today. I feel tired, probably because, as my Nan suggested, the uncertainty over the diagnosis has been a mentally exhausting exercise the last few weeks. But I'm glad that this process is almost complete and the next phase - treatment - is beginning.

Of course, this leads to its own set of considerations.
I'm talking about how cancer will impact on my independence, my sense of "having a life" - something everyone cherishes. And I'm no different.

Admittedly, my life wasn't deeply imbued with meaning or anything like that before this all happened. I'm not a doctor, a charity worker, nor someone important really in that sense. It centres more on spending time with my friends; playing on my Xbox; going out on the weekends; trying to find a girlfriend; football; working. The usual things mid twenties guys do. Yeah... really not that meaningful now I write it out, but nevertheless my life is still mine, and still open to being changed, rocked and improved at any point because, well, it is free. And I like that.

It was scary thinking that that sense of independence and individuality would fade away, and I'd be reliant on my parents again (as much as I love them), staying away from work and staying in the family home, unable to just do normal things nor have the freedom to do the things I enjoy.

With this in mind, and the freshness of the "side effects of chemotherapy" conversation in the back of my mind, next Friday was beginning to feel like a seminal moment when my independent life was ended, thereby mentally positioning this week as my "last week of normality for a while", like a lightbulb beginning to flicker before dimming and going out.

Now, part of the weird thing about having cancer is that you can find people all around who have shared the same experiences. In the beginning you feel a bit alone. You can feel like your life (and, of course, life for those closest to you) has shifted seismically, whilst the rest of the world meanders on. But you do find people online, and through friends of friends (what the modern era somewhat clinically refers to as your "support network") who will just talk to you, and make you realise that you're not abnormal, you're not alone; other people have been there, gone through it and come through. It sounds cliched, but it's a massive help to find others like you.

You also, of course, have your friends. They may not have much experience with cancer. But that doesn't matter. They're there. And it doesn't do them anywhere near the justice they deserve to say that they have been absolute stars. As they always were.

More than anything, this experience has reignited my belief in humanity. It's astonishing for me to see how helpful and lovely people are at heart, how the fundamental good I still think is extant in the human condition is evoked by awful situations and, ultimately, how much of a leveller cancer is.

One of the people I'd met through this unfortunate state of affairs inspired me today, and broke me out of my fears about losing independence.
Of course life won't be exactly the same. But I've accepted that now.
Moreover, what chimed with me from our conversation was that, for her, it was the normality, or the preservation of it as far as possible, which kept everything ticking over.
Normality.
Going to work. Seeing friends. Doing whatever you used to (within reason). Just adapting to the situation you find yourself in.
And, on hearing that, all I thought was this: I've always been good at adapting.

Suddenly it didn't seem so bad, to learn you can work, you can see your friends, you can exercise, you can do most things. In fact, it felt a bit like a brightness edging into view behind the large cloud that's hanging over (but not enveloping) my life at the moment.

I've spoken a lot about how I'm determined to get through this. It's clear that, once all of the treatment starts, I'll have to see how I feel physically, and things won't be quite the same for a while.
And I'll resemble a Triad / Shaolin monk for a bit, too.

Though I may currently be adrift in a sea of hospital appointments, the spectre of infusions of hardcore drugs and hair loss, I'm going to do my utmost to do all of this on my own terms.
As I do with most things.

I won't be living with cancer; cancer will have to live with me.

And it's only a temporary lodger, subject to a 4 month eviction order.

I'll hold onto my independent life like a barnacle to a submarine: without losing that independence; without losing my drive; without losing my life. In both senses of the latter phrase.

T

D-Day

Stage 2A.

It's in my neck, both sides (I already knew that), and also there's some enlarged lymphs around my heart.

But it hasn't crossed my diaphragm, meaning it's still classed in the "catching it early" definition.

My primary feeling on hearing that was relief. I have a bit of apprehension left because they need to do a bone marrow biopsy to make sure it hasn't infected the marrow - the levels of activity in the marrow are slightly elevated, but the haematologist said it was very unlikely that it would be the case, more of a rule out (I've heard that before, hence the sliver of apprehension )- but the abiding feeling is  definitively relief now that the uncertainty has abated.

The treatment plan is four cycles of chemotherapy, using ABVD (the standard drug for HL treatment), followed by a final radiotherapy course to shore up the remission. The biopsy results, by the way, confirmed the diagnosis of HL.

A "cycle" is defined as a month, wherein on the 1st and 15th day of that month you have treatment. It'll be pumped through my veins. This means  4 months of chemo plus perhaps a week of radiotherapy to cure me.

Apparently, I was close to a certain point of inflammation where they'd have less chemo but, unfortunately, I was slap bang on the cut off point... but definitely better to get it seen to rather than undertreat.

Throughout the appointment, I was listening hard for "consultative speak" which would betray any anxieties - it sounded like there weren't any from the consultant or nurse, which is hugely positive, too.

I start chemo next Friday (30th January). Before this, I've got to have a lung function test and, as a precaution, bank some of my sperm just in case the chemo has any adverse impact on my fertility - there's no guarantee that it won't, so best not take the risk because I definitely want to procreate some day.

So, all in all, relief - good news in a bad situation, as one person I spoke to put it.

I also get some cool perks (well, you don't want to be in my situation to get them, but whatever), which include:
- A wig. This might be an interesting party piece one day.
- Free prescriptions for life (you have to pay for your prescription drugs in the UK, nowadays, non-Brit friends)
- And this:

We've been hearing a lot about A+E recently and how long the wait is. One of the side effects - potentially very serious - of chemotherapy is that a little infection can turn very nasty very quick. If I have this card, I am seen within an hour rather than waiting 5+... apparently it's fairly normal to be admitted to hospital with an infection during treatment, and it won't affect my prognosis (still excellent) or anything, but it's just a little extra piece of mind that if I did have to be rushed in I'd be seen very quickly and anything bad taken care of.

Physically, I feel okay (obviously apart from, y'know, having cancer) and, mentally, I feel better able to adjust to what's going on. As my Mum said, "thank Buddha that it wasn't worse"

So that's it. As one person said to me, just have fun before the treatment starts and my life changes again, just for a bit. And I intend to.

T

The day before (take two)

It's amazing how the music you love changes over time in terms of what it means to you. Some songs become inextricably linked to other people, rendering them unlistenable if those people disappear from your life. Some songs you rediscover some time after you first heard them, and you feel yourself falling in love with them all over again. Others, perhaps the ones that were emblematic of one thing previously, become imbued with a new sense of meaning as circumstances change.
This is one of my favourite songs ever, Runaway by The National. Read over if you will, and/or maybe give it a listen. My emphases below.

There's no saving anything
Now we're swallowing the shine of the sun
There's no saving anything
How we swallow the sun

But I won't be no runaway
Cause I won't run
No, I won't be no runaway

What makes you think I'm enjoying being led to the flood?
We've got another thing coming undone
And it's taking us over

We don't bleed when we don't fight
Go ahead, go ahead, throw your arms in the air tonight
We don't bleed when we don't fight
Go ahead, go ahead, lose our shirts in the fire tonight

What makes you think I'm enjoying being led to the flood?
We got another thing coming undone

But I won't be no runaway
Cause I won't run
No, I won't be no runaway
Cause I won't run
No, I won't be no runaway

What makes you think I'm enjoying being led to the flood?
We've got another thing coming undone
And it's taking us over

We don't bleed when we don't fight
Go ahead, go ahead, throw your arms in the air tonight
We don't bleed when we don't fight
Go ahead, go ahead, lose our shirts in the fire tonight

But what makes you think I'm enjoying being led to the flood?
We got another thing coming undone
We got another thing coming undone
And it's taking forever

I'll go braving everything
With you swallowing the shine of the sun
I'll go braving everything
Through the shine of the sun

But I won't be no runaway
Cause I won't run
No, I won't be no runaway
Cause I won't run
No, I won't be no runaway

What makes you think I'm enjoying being led to the flood?
We've got another thing coming undone
And it's taking us over

We don't bleed when we don't fight
Go ahead, go ahead, throw your arms in the air tonight
We don't bleed when we don't fight
Go ahead, go ahead, lose our shirts in the fire tonight

But what makes you think I'm enjoying being led to the flood?
We got another thing coming undone
We got another thing coming undone
And it's taking us over
And it's taking forever

I'm sure you can guess the meaning to me now. I'm sure everything will feel like it's taking forever, and it will feel like my world has been taken over during my treatment, but the sentiment of the song will be something I'll stick to throughout; I'm not going to lose, I'm not going to run. 

To link it to tonight, I wrote this time last week how everything going on had made me feel - apprehensive; contemplative; a sense of nervous anticipation. But I guess the thing about anticipation is that you have a highly active period during which time everything rushes ceaselessly arounds your brain as it crackles and chews on what's happening. But, for me anyway, this can't last. The bonds of thought that had absorbed me begin to shrivel and dissolve - much like my cancer will - as I begin to realise that none of the thoughts you can think, without the finality of what you need to know, will ever lead anywhere. I can't deny that I still think them, but it becomes easier to be disciplined about it. 

I think I'm ready to know now. I'll be able to deal with everything, the uncertainty removed. And I'll know for sure what it is, and how long it'll take for me overcome it. Which I most definitely will. 

I won't be no runaway
Cause I won't run

Tom

PET scan

Back into things today with a PET scan after a nice weekend of - mostly - forgetting about what's going on. As for the name, PET... no, I'm not taking my imaginary moggy for an X-rayed once over.  Moreover these, scans are, I was told by my haematologist, designed to see on a deeper level which nodes are reacting to this radioactive sugar they pump through your blood. This was the final diagnostic test (though I'm told I'll have PETs again in the future to assess the progress of chemo) When expanded beyond the acronym, these scans also sound refreshingly like the kind of technobabble used on Star Trek -  I can just imagine Picard saying "Data, scan that planet and tell me the Positron Emission Tomology of it." I can imagine many blank expressions and/or heads shaking in disgust at me just now... :)




Anyway, I arrived on time and waited until my name was called. Yet again, I found myself rocking hospital fashion, with loose fitting quasi-queasy green gown (left) accessorised, of course, by the obligatory cannula in my (now very bruised) elbow crook (right)

Through the cannula they pumped the radioactive sugar.  It's amazing how quickly I've adapted to having stuff sticking out of my arm and the "sharp scratch" you feel when the needle goes in felt everyday. Nonetheless, there was an odd sensation when the sugar was pumped through me; I can only describe it as a lukewarm chill going through your veins, a bit like if you touch metal on a cold day and feel, momentarily, the difference between your body temperature and the object.

I then had to sit in a darkened room for 45 minutes and was not allowed to do anything except sit there. If you know me, you might realise that that was a bit of an ordeal for me. If you don't - I'm normally highly active and multitask by default. But yeah, in the grand scheme of things, obviously not much of an imposition.

I was then led into a very cold room to see this large contraption, which is the PET scanner:

At the edges of the room there were lights that changed colour throughout my scan, which lasted about 25 minutes - presumably in correspondence with the progress of the scan, but simultaneously a fun light show to observe as I lay there, arms up, unable to really move for 25 minutes.

Fairly painless overall, just a bit hard if your brain buzzes and is in need of constant occupation. But that's just because I'm a Gen Y digital native I guess!

Back to work tomorrow, during which time they'll be conducting the so-called MDT meeting where there'll be discussing my case and agreeing the diagnosis. And then I hear the news on Wednesday, when I'll update (probably, might write tomorrow). Nerve wracking but, as I explaining to my friend today, a necessary thing in the long run... 

O+U.

T

A weekend off

I have another week (nigh on) to wait until I find out much more. PET scan on Monday and Diag-day on Wednesday.

So I'm going to put this to one side for the weekend, as a few really insightful texts have told me, and try to forget what's going on, just for a bit. I might even break out of my puritanical shackles and have a beer or two!

I'm shamelessly copying what I wrote to one of my lovely Macmillan buddies, but it bears repeating for myself and, if it's in the future, anyone else reading this blog:

I'm just seeing it as something I've got to do and get through. I can't not do it, I can't not go through it, so why not just accept it and make the best of it?

Why not indeed... :)

Anticlimax

Went in to see the haematologist today, all braced for a diagnosis as you know... she was very nice, but she didn't have any of the information. In fact, it turns out they need me to have more tests and the results of the biopsy (last tuesday) and the CT scan (monday) aren't available yet! 

All in all, a big anticlimax.

The schedule for the next few days is another scan - this time, a PET scan, which sounds like it's a more detailed version of a CT scan - and I had a further blood test today. Next Wednesday is the day.

I have some mixed feelings about the delay. I really wish I'd been told that the purpose of today was not a diagnosis, but moreover to begin another part of diagnosis. It also prolongs everything by a week. But hopefully I'll get going with the chemo (it's always chemo for blood cancer) as soon as the week after next. 

My steristrip across the incision into my neck also came off today, so I have this little cut across my neck on full show (with the lumps still underneath, minus their one compadre that was removed in the biopsy):

Can't decide whether it's cool or not! 

Either way, it'll be one to point to and tell the grandkids about someday.

So, another week on ice I suppose all in all. Shame, but at the end of the day they need to get the diagnosis right!

T

The day before

Well, I didn't really sleep last night. At least, it took me a long while to get to sleep, despite the fact I went to bed at about 11. I don't think I was even really throwing everything about in my mind, nor in a state of acute despair. I was just preoccupied thinking about all the permutations and ramifications... seemingly a bit justified at this stage. I'm surprised how rationally and coherently I've taken everything; after the initial shock, I guess it's something that you have to wrestle into some sort of intelligible form in your head, otherwise it overwhelms you. And I'm not going to let that happen, no matter what is said tomorrow.

Luckily, I've managed to tire myself out a good deal through my extended waking hours yesterday, so hopefully I won't be as long in falling to sleep tonight. Hopefully.

I'll write at length tomorrow, but I'd guess there's a fairly good chance I'll have a decent idea what I have and the treatment plan by the time I emerge from the hospital.

O+U
T

Tom's Tomography

CT scan all done. Easy process really, apart from having another uncomfortable little cannula inserted into my arm. Just lying down and going through a hoop a couple of times, with arms up and arm down. Only thing that was annoying was moving my hands up after I'd been fitted with the dye. Anyway, back the cannula, it's weird but I guess I need to get used to this sight cos I'll have one in my arm soon for the next few months, or so I've been told:

Pretty, eh?

Glad that's out of the way, along with the biopsy, so it's just the third appointment to go through which completes the triple pre-treatment appointment.

I hope my brain can relax now the scan is over, and stop ruminating over every little twinge or ache in my body. The facts have been captured now.

I also hope that I don't have to keep wearing hospital gowns. I'm not sure I'm very good at pulling off the "patient chic" look:

[mane is getting long again!]



Normal day at work tomorrow, friend over tonight. Then it's results time.

U+O.
T

The start of a big week

It's a big week this week, with the CT scan on tomorrow (well, today now) and then the meeting with the haematologist on Wednesday. The outcome of the latter will dictate how my life is planned out for the next few months.

I can't deny a distinct feeling of apprehension. Of course, it's only natural to feel that way, but it's something which is nagging at me nonetheless. The uncertainty, in particular, is the nub of it. It's almost like those memories of waiting anxiously for exam results day. I always envisioned my results, or moreover the potential for what they could be, swirling around in the air, endlessly reconfiguring on the paper up until that moment when I finally opened up the envelopes and discovered for sure how I'd done.

I've had almost 2 weeks now of living with all of this and it's been an odd experience realising things are different - even though I know something is wrong with me, there have been moments where I've almost completely forgotten (e.g. when I'm enjoying my amazing friends' company). Then, something like maybe a discomfiting pull in my jaw (from my biopsy incision) occurs when I'm eating, or I register an undisguised flicker by another's eyes to my neck, or I feel an insidious feeling of fatigue seep through me - all of which pull me firmly down to reality.

Other things have also been tough. I don't yet have the facts, so any twinge, ache or itch, especially in my chest, groin or armpit, is scrutinised and worried about whenever it happens. That is, until I consciously think to control of those thought patterns and try to shut them off.

The anatomy of the emotional process I've found myself going through is actually fairly similar to a sudden, unexpected break up, which, in my experience, is:
1) An immediate sense of shock on hearing the news that things will never be the same again - a numbness descends on you for a few days.
2) A slow reconciliation with oneself as the shock gradually dissipates, as you come to accept your new situation.
3) Acceptance; "yeah, I've got to move on, give it a few months and I'll be all right".

Strangely, I think that the lived experience I have of these past emotional traumas has enabled me to have a sense of discipline stored in my brain which helps me deal with "bad" thoughts somewhat. I never thought I'd be thankful for those experiences.

I'm almost at acceptance now, going by the little emotional model I set out above. By that, I mean I've accepted - obviously, how can one not - that I am a cancer patient, but once I know everything on Wednesday I'll absorb the news (probably going through the other two stages I just mentioned again!) and be able to reach a plane of mental stability, with my life having been planned out before me. Plus I'll have some idea of when the light at the end of the cloyingly dark tunnel I've unfortunately found myself in will be visible again.

Anyway, despite my apprehension, I'm taking the positives I can from it, and trying to live life anchored through those for the time being. These are:
+ We have identified what is wrong with me, and these results will determine how this will be fixed
+ This whole process needs to be gone through, no matter how apprehensive I feel; there's simply no other option
+ Medical science is incredible, and I am young and (relatively!) fit
+ I don't think I exhibit any "B" characteristics of Hodgkin's (i.e. I am not symptomatic, which can indicate that it's a bit more progressed)
+ I'll get the best treatment and, to be honest, what is a few months out of my life compared to if I did nothing and lost it
+ I'll come out the other side, as many have said (particularly my Auntie in a very nice text) far stronger

Time marches on doesn't it? I almost don't want to publish this because it'll mean the week has begun and I have to go to bed. But I must. U+O.
T

Back at work

Went back to work for a full day today. Had a friend over for some gaming last night - was odd to not be drinking alcohol alongside it (almost old school like back from when I was a kid with my friends) but a welcome change nonetheless.

I thought I'd go to bed early, only to be kept up by a constant whirring of some guy on the road doing his engine. At midnight. It came in long bursts, invariably followed by a short silence during which I'd start to settle, followed by the din starting again. Needless to say, I didn't drift off until far later than planned... the best laid plans...

At work I was okay, feeling fairly energetic when I went in, but started to get a bit fatigued towards lunchtime - the same feeling as last year, I suppose. At least I know what it is now.

Unfortunately, whenever I was eating I felt a slight twinge on my jaw. Must be because of the proximity of the cut to where my jaw sinks when I open my mouth to bite. Very frustrating! At least the swelling has abated a bit now.

Also today I've been talking a little bit to someone else my age with my condition up in Newcastle who was telling me what to expect regarding treatment. It seems like a lot of unpleasant days and a few rounds of treatment. But I'll take anything to get through this, and already can't wait 'til it's over; here's something I wrote in our chat earlier that bears repeating here:

"We will beat this because of the state of mind, as well as through therapy :). And yeah, I'm not looking much up [online] because it'll make me into a nutbag and also they aren't the facts when it comes to me, so I'm waiting until my Doc tells me what's going on. It's all for the best and, as you say, my road to recovery is going to be set out for me, it just remains for me to walk, stumble, crawl and, ultimately, run along toward everything being good again."

Being at work especially exacerbates the feeling that I can't wait and can't help but wish I was healthy and able to carry out what I want to straight away! I heard people talking about going out and things and I felt so jealous! But it wasn't like malicious or anything - everyone has been really nice and the amount of support I've received has been really humbling.

Anyway, this weekend. I am taking it easy tonight because I was feeling a little fatigued after today. My friend is coming around, and my Mum is staying here with me. I'll be seeing some friends tomorrow and then my cousin is staying over. Not sure about Sunday, but I'm determined to keep busy and try to be as active as I can!

Working swollen

Went to a meeting this morning and have been working this afternoon, so I feel okay as long as I keep on track.

I've been talking to a few people online via the macmillan forum (which is a group for people with my condition and, indeed, all cancers in the UK) and it's assuaged me somewhat. However, they're right that you really shouldn't be alone too much, I've been working from home this afternoon (thought it was a good idea to go and work from home post biopsy) and it's definitely a struggle to keep your mind on track when you're feeling worried.


It's a complex maelstrom of emotions, and you think many things which often cancel each other out. For example: I know it's serious, but it's treatable. I know it's scary, but it's curable. I don't know what stage I'm at, but I know the prognosis is excellent at any stage. And it's paralysing because it feels like everything should be okay, but there's a nagging uncertainty because I don't yet know the full facts.

I'm trying so hard not to touch my neck (I've obviously left alone where I was operated on), because whenever I do I keep feeling little lymphs dotted around. It's so scary and alien, and I can't wait until they've gone. I really, really can't wait to beat this.

Day after op

Just a quick one today. Went to bed at about 10 and slept about 11, waking up about 11 again - feel a bit groggy and my neck is all swollen from where they made the incision.. as you probably might expect.

I'll be spending the day relaxing and ensuring I'm okay for tomorrow - I'll go to work as normal (well, travel for a meeting!) so best get up to strength.

To be honest, I'm just still thirsty and hungry from having almost a full day of being nil-by-mouth yesterday!

Anyway, I'm glad the operation is over and everything has started moving toward diagnosis and treatment. 1 week and then we're good to go.

Onwards and upwards - O+U... gotta be a new motto.

Biopsy

Had my biopsy today. Was nerve wracking in many ways - I'd never had an operation before so I didn't know what to expect.

To be honest, the fact that I was nil by mouth was the biggest factor playing on my mind. I hadn't eaten since 11pm the previous day and hadn't had anything to drink since 5:45am! Sounds okay if you consider I got into the hospital at 7am... not okay if you consider that I wasn't readied for operating until 16:30 - a full 9 and a half hours later!

Here's a handy drawing of where the biopsy was -->

But I was really patient. I have in my head now that all these things NEED to be done in order for me to get better, and I'll live through them without complaint.

Anyway, the operation was fine. Was incredibly nervous before I went in, I felt the palpitations in my stomach and, obviously, I was empty so I was starving. I just kept thinking about eating to keep myself going rather than being worried about my op. I remember the anaesthetist talking to me as they fitted the cannula and everything began to go through me. I just passed out and I didn't remember anything after that.

I'm home now and feeling okay. My first ever operation done.

I have a CT scan on the 12th and then an oncology meeting on the 14th. I'd imagine that the 14th would form the establishment of my treatment plan and, most importantly, where I am to receive my full diagnosis. I'm obviously apprehensive, but hope that, after everything has been found and identified, that we can start moving forward to fixing me.

So there we go. It was a quick operation (just a long wait time because of our busy NHS!) and a smooth process really. Onwards and upwards.

Diagnosis

I'm Tom, I'm 25 years old and live in London, England

On 31st December 2014 I was diagnosed with Hodgkin's Lymphoma.

I'd been ill with the flu in November of 2014. I'd also had some like little things pop up in my neck a while before that which the doc said were innocuous. Then, towards the end of December, I'd noticed that I had some nodes or whatever they are pop up in my neck, and a lump had started to grow beneath them. I'd had some form of glandular fever around January I think - I had had some stuff pop up in my lower neck (always on my left side) before but they'd receded. I was also feeling knackered - more knackered than ever, I'm normally incredibly bouncy and enthusiastic - toward the end of the year. We'd had a big project at work - I work in sports research - so I'd attributed it to that and it being the end of the year. I'd also had some itching all over my body and was trying to find a cause - allergy to something or other, I'd thought. Anyway, after the lump popped up and, particularly, when my dentist felt it and also expressed concerns, I rushed to get an appointment with my GP.

I went to the doctor who urgently referred me - at that time, it was to "rule out the worst case". Obviously, I got really worried and upset as it was a cancer referral. But I spoke to friends and associated doctors who told me it was a really low chance that anything particularly malignant was going on - probably just glandular fever or a post viral infection. My family were going to Japan over xmas and had a bit of a period of uncertainty as to whether we should actually leave with that hanging over us. I'm glad we did.

On New Year's Eve, I went to see the head and neck specialist. He felt the lump and thought, too, that it was something innocuous and had me have an ultrasound to confirm it. The ultrasound technician, though, said it wasn't what he suspected and "looked like glandular fever". Two shots from both sides of my neck (which was a shock - I didn't know it was in the right side) and my diagnosis was confirmed.

I could tell from the consultant's body language that it wasn't good. He took me by the hand and told me what I had. I went out of body, I think. I don't remember too much, only him saying what it was, my Mum asking what the cause was (none - bad luck) and I asked a few questions but I don't really think I've retained too much.

It's been 6 days since then. I've been variably busy with friends and family, but it's been really scary. I don't think I've slept restfully.

Tomorrow, I have a biopsy on the affected area from which they assess my condition.

Mentally, I feel so mixed up. It's a heady concoction of denial (it doesn't feel like it's me), sadness, hope (it's really treatable and the success rate is high), attempts to distract myself and confusion. I don't have the facts yet but once I do then I can mentally adjust and get ready to be treated. But I'm glad they know that there's something wrong, and that it will now be dealt with. All of these are things I need to hold on to.

I'll maintain this blog throughout my time fighting this, up until I am back on my feet again.

I really hope that if someone, somewhere looks this up with the same diagnosis they will be able to derive even the smallest modicum of comfort from the fact that they are not alone and that others go through this too. I won't be giving up on me and will fight, fight then fight some more. If you're reading this in a similar situation, despite the unfortunate nature of this first post, I know I'll say the same to you.

Write soon.

T