Saturday, 28 February 2015

ABVD - 3/8

First things first. Here's how the progression of the main sickness site over the three weeks:
30th Jan
13th Feb
27th Feb














Miracle drug

Definitely going down!

Yesterday I had course 3 of 8 of ABVD chemotherapy. Almost half way there now! It wasn't the nicest and, I have to admit, I was apprehensive beforehand because of how **** I felt last time after the chemo. Fortunately, I'd been prescribed this fantastic drug called Aprepitant (on the right) which I took an hour before I started. It's a newer anti-emetic designed to keep me from feeling as sick as I have been, and it seemed to work a charm - I didn't really start feeling particularly bad until right up until the very end of the chemo.

I was a lot faster this time taking the drugs in - the dacarbazine (big bad bag) wasn't as bad as it had been before. I can still taste it a bit this morning, though, which isn't as pleasant - glad I have my usual pills to keep me afloat. I got there 10am on the dot and I think we'd left by about 17:30... shearing a good 2.5 hours off my record. I just went to bed when I got in, feeling super crap as you might expect... sadly, although there are lots of drugs available, you're still going to feel crap after having aggressive chemo smashed through your veins.

owwie

On that, today I feel sore... I have sore veins. It's an odd sensation, just a bit of prickliness, basically, all around the lower part of my forearm - I haven't experienced this before. I'm fairly sure it has something to do with where they decided to put it this time - in my right hand, which is my dominant hand, right on the sinew of the vein. Yeah I have a big vein there, but it's really sore today and I can still (don't know whether it's mental or whatever) feel a bit of a weird sensation in my whole system. Hopefully it'll all be gone by next weekend.

Overall, then, my slight queasiness has returned, I feel pretty tired and am not in the best of moods. But - as I kept saying to myself last night as my veins were coursing, disrupting my sleep - I'll take this if it means I'll be better by the summer :)

Wednesday, 25 February 2015

Bone marrow clarity

Went into clinic today for a follow up after cycle one, and got my marrow results, too.

All clear! And no more bone marrow biopsies ever again! Yay!

In fact, she only told me about the results when I asked - which is only a good sign in my book.

She also examined my lumps and said it all felt noticeably smaller (if I feel it myself that's true for sure), which means I'm responding to treatment. Double yay!

There had been a little build up in my head coming into today (probably what my lil tension headaches are attributable to). Of course, the family and I were worried about all this; the bone marrow was the last part of the diagnostic process - the outstanding potential spanner in the works. So I was mightily relieved to hear the all clear. I hope the next time I hear those words - all clear - it's referring to my cancer in general :)

I had my blood test, too and, all being well (if the little fighters in my blood are strong enough - which they should be) I'll begin Cycle 2 (treatment 3/8) on Friday. 

It's really the correct term; "Cycle". Everything kind of just repeats itself - Friday treatment, 2-3 days feeling bleurgh, okay by Thur, a week of slowly forgetting about lymphoma, then Friday treatment again. I'm getting kind of bored of it already, but really, I'm not precluded from doing too much I normally do, apart from going out in the evenings amongst the crowds and working 'til after 4. I'm thankful that it's like that; with any luck it'll continue being that way and I can just get on with it. 

Also, my hair looks okay, a bit thinner if I scrutinise it but who knows. Only short term.

Treatment 3 on Friday then... almost halfway there. Feeling a lot more encouraged today - might do a high-octane work out to celebrate :)

T

Thursday, 19 February 2015

Exercise bike and discharge from hospital one

Going back to work tomorrow and feeling strong again. Completed both courses of anti-sickness tablets and no longer feel queasy so all good.

Went to see the doctor at the hospital where I had operation today (as opposed to the hospital where I'm being treated) to have my follow up on my biopsy op site. It's still there as a scar but not particularly angry or anything. The doc said it was all fine and good, it'd just take time to recover and recede to just a little scar on my neck (~2-3 months.. maybe longer because of chemotherapy). Also gave me the usual "if I could choose a cancer for myself it'd be this..." spiel, which was nice to hear (as usual!). I was then discharged as a patient from hospital one... one hospital down, one to go!
Home exercise enabler

Apart from this, I've been okay and have had relatively little to report (unless you like gaming - I'm guessing most people reading these words do not so I'm not expanding and wasting people's time!).

As with last week, as the feelings of sickness faded, I began to get more and more bored, so, luckily, on Monday my exercise bike arrived and I started using it (in conjunction with the weights and stability ball) to do some light exercise routines. For example, I did 10k today. Some lovely person has given me a few in-home routines to do to keep me occupied when I feel stronger, so I'l try to stick to that and become fitter during my time "off". It's such a good little outlet, and really odd to think that I'm subconsciously living a really healthy lifestyle at the minute, starved necessarily of the sin goods I'd normally be ingesting a few times a week. An unexpected silver lining.

I'll be back to work tomorrow (10-4), relaxing with friends/fam over the weekend, then back into work Mon, Tue and Thur of next week.

On Wednesday I am going to the haematology clinic to see the consultant and probably just catch up with how I'm doing, plus hear about my bone marrow biopsy (which I'm a teensy bit apprehensive about) and get my blood done so they can measure the neurophils (fighters) in there in preparation for next Friday, where the cycle begins again. Not the exercise cycle. The cancer curing one.

Expect I'll write again Wednesday about the results of the clinic

T

Sunday, 15 February 2015

Slightly queasy but bearable

Almost 48 hours since 1b, and I'm feeling okay. The only thing is that I basically feel slightly queasy the whole time - it's not the intense nausea I had on Friday night, just a little, persistent feeling of blurgh (that's the technical term). I also woke up in the middle of the night yesterday needing to take a pill to settle my tummy, which hasn't happened so far - am just a bit tired today overall as a result of having fragmented sleep.

Imprinted on my brain as a pre-teen!
The closest thing I've ever experienced like this was when I would play my Gameboy all day when I was younger and got square eyes and a sore head.  Seriously, images from Pokemon such as this one on the right were imprinted on my brain given how much I smashed that game!
The anti-sickness pills make it all bearable, but I hope that they will be able to provide me with those aprepitant super-pills to get rid of this hangover feeling after 2a. I say this just because it is a bit irritating if all I can do is sit around watching TV all day at this moment and that kind of makes me feel a bit sick.

Speaking of inactivity, a foldable exercise bike has been ordered (courtesy of Bank o' Dad) so I can do some cardio in home. My metabolism is off the charts at the moment because - according to the nurse the other day, anyway - my body basically needs fuel to deal with it all. I really don't want to get overweight if I'm housebound more than usual... not a good look for me - I got childbearing hips in the mixed race body lottery so any paunch becomes amplified!!

As with 1a, as long as the side effects are confined to nausea and sleepiness, I think I can live with that.

I'm already dreaming of remission, normality and freedom. I've noticed myself feeling a bit pent up and frustrated at times as life continues around me and I feel like I'm at a stand still. It's tough as someone used to going at pace the whole time. But, like nausea and sleepiness, it could be worse, and I need to be thankful for that.

As for the rest of this week, I'll be in again tomorrow - my cousin's coming in a bit to play FIFA avec moi tonight and will stay over - but will see if I can head out for a short walk in the afternoon. Then, I'll see a friend for lunch Tues, have a follow up meeting in clinic for ENT to check up on my biopsy would on Wed, and hopefully return to work on Thursday. See what everyone makes of my shaven headed new look...

T

Saturday, 14 February 2015

ABVD - 1b (2/8)

Had treatment two yesterday. One quarter of the way through treatment now!

The order of events was the same as before, as I think it will be from here on in.
Received my lovely cannula and got going about 12. They always look so bionic:
Cannulas: bloody bionic

Your next model?
[also visible are my beautiful Forever 21 (MEN'S! DEFINITELY MEN'S) sweat pants - chemo fashion is totally cutting edge, with loose sweat pants paired with long anti-compression socks worn under my electric blue trainers, plus a black thermal top with another check top over it... with my shaved head I'm sure I was the most fetching chemo patient in the land... see me on the left... model scouts take note]

I felt okay during the infusions. I was variously light headed, hungry, and irritable. And then, at the end, I began to be overcome with an awful, awful nausea. The same as last time I think, but lying in hospital rather than in my own bed, with the bright lights and the thin blue blanket over me, made me feel pretty bad.  I'm fairly sure if I was more conscious of my behaviour my random moans of pain and tossing and turning in the hospital bed would've been embarrassing. But I wasn't, so it didn't feel that way.

Ondansetron drip
The doc prescribed me one final drip (my arm was getting seriously sore by this point) of an anti-sickness to help me get home, which did seem to alleviate some of the nausea by the time it was done (it's the little bag on the right). Next time, I'm going to be given another, more intense pill called Aprepitant which will hopefully ward off the nausea. It is seriously bad, not just me being uber moany - the nurse said it's often bad in younger patients. So I hope it'll be better for 3/8.

We then got in the taxi home about 8pm (10 hours in hospital!) and I went to bed.

This morning I feel kind of groggy but not too awful - I took an anti nausea pill as soon as I woke up, but really all I felt was hungry after missing dinner due to being pumped full of anti-cancer drugs, which aren't particularly filling. My mouth is also a bit metallic again, meaning goodbye to my morning coffee. But, other than that, I'm on a familiar cycle.

The only concern now is that I am neutropenic, which means that the infection fighters in my blood are particularly low. I'll be at risk for the next few days - a chemo cycle takes in 2 treatments over 28 days, meaning after treatment 2 (i.e. the one I've just had), from days 15 to about day 23 (so to next weekend) are the points at which your system has been pretty decimated by the chemo. Any cough or cold or flu becomes serious for me and I have to go to hospital and be treated. Ugh. I'll just have to be fastidious over hand washing and avoiding crowds etc. and hope for the best :)

Will rest up over the weekend and hopefully be able to go out for a short walk or something on Mon or Tue. Not much else doing now, though, except recovery. How boring. I do hate cancer.

T

Thursday, 12 February 2015

On hair, identity and cancer

Today, I shaved my head. I did it because I'm starting treatment 1b tomorrow (1/4 of the way through) and that's looking like - from anecdotal evidence I've canvassed from all the lovely people I've been speaking to - the watershed for when hair falls out. So thought best to pre-empt it and get it shaved. Here's what it looks like  ---->
(apologies, model scouts, I'm awful at selfies) 

I'm not afraid to admit that I felt like crying during the haircut, was holding it in on the way home and burst into tears in the lift up to my flat.

It's silly, really - yes, it's only hair. But it's amazing to think that I didn't want to cry after I was diagnosed, after I was staged, after chemo number one... nope, of all those perhaps more pertinent times to cry, nothing.I was close when I got my letter, but didn't. Instead, it's the hair that's made me actually go and do it. I don't mean to sound like I was holding it in, attempting to conform to some sort of stoic idea of masculinity that belongs to a bygone age. I wasn't holding it in. I'm a modern male with emotions and feelings that I can, and do, articulate. It just happened spontaneously. It was just looking at myself in the mirror of the lift, as I do every day, and seeing a different picture, a different image of the self, that really brought it all home and made something inside me soften - even more so than seeing my name and "Hodgkin's Lymphoma" juxtaposed on a piece of paper.

I guess shaving my hair represents a departure from a sense of "normal".  There's obviously no shame in going through chemo and getting cured, and there's no suggestion I've been made to feel radically different in any way so far. Sure, I've been making jokes about looking like a Shaolin monk, like a Triad gangster, but the reality is it's a tough one for me to come to terms with: I'm soon going to * *look* like I'm going through chemotherapy. I'm going to look like a cancer patient in real life, not just on a hospital spreadsheet somewhere.

Of course, this just something I'll have to adapt to (and I will). Of course, one day I will be an ex-cancer sufferer. Much like going through treatment, I have no choice about either of those things. 

I am having chemotherapy number two tomorrow (chemotherapy 1b - 2 of 8, or 1/4 of the way through). Here's the picture of my neck today, 12th February 2015, alongside the older one from 29th January - before I started to be treated:
(Okay, I do look a little more gangstah now)
(I definitely share my sister's love of check shirts)

But anyway, as I hope is visible in the before/after pics, it's definitely gone down, which means, I hope, that it's responding to chemo treatment. I hope the mediastinal chest nodes are in the same boat and responding too.

It's the same treatment tomorrow (ABVD), after which I'll feel nauseous and tired for a few days, before returning to normal - all in all I spent this week-after-treatment forgetting I had lymphoma, living as close to a normal life as possible and enjoying myself.

I will now get treated again, have a week recovering (it'll take longer to recover from each treatment as time goes on, but I'm prepared for that) and then spend another week forgetting again. And that's the way it'll be from here on out, I think - until I'm better again.
And my hair grows back - albeit in a perhaps weird and wonderful new way (apparently it can happen).

In any case I will adapt to whatever happens and get through it.

"Strong" is not a characteristic I'd have ever really applied to myself before all of this.
Now it is.

T

Monday, 9 February 2015

First run since diagnosis

This evening, I went for the first run I'd gone on since I was diagnosed.

Now,  I'm no fitness junkie or anything, but last year I was (up until December when I felt like something was kind of wrong) gymming a lot and generally trying to improve my healthy living. But I hadn't really done anything since diagnosis, and, to be honest, I'd started to feel a bit like I needed some sort of outlet from the monotony of work, home, sleep, work.

This evening it was nice. Around 8 degrees centigrade (46 fahrenheit), and the twilight was pretty. Prime running weather. Songs on my spotify (music player) were consecutively higher tempo, willing me toward some exercise. I felt energetic; boundless.
Nan, who was on the phone to me, was sagely advising me not to overdo it and just wait 'til it's a bit warmer before I start going off and doing that sort of thing.
I listened intently to the advice of my elders and betters with as much acuity I usually do: as soon as I got home, I promptly stripped off my work clothes and put on my running gear. Then out I went.
Sorry Nan!

Out on the road, it wasn't too bad going - the run to Canary Wharf is about 1.9km according to google maps, but I take a longer route in. So I'd reckon it's about 4-5km there and back. It wasn't too cold, but I could feel it in my chest where I hadn't exercised for a while. But it was pretty out there:


I didn't run the whole way there and back - my fitness unfortunately isn't as high as I'd like at the moment, so I had to do some walking - but I got there and back again, safe and sound.

Now I'm all showered and warm again. And I feel good.

A cathartic experience. Must keep doing as often as I can.

Plans this week are a night Xboxing with my friend tonight, Dad staying tomorrow, maybe out with friends Wed and/or Thur all in preparation for Friday. Think this'll be the strongest I'll be before the cumulative affects of the chemo start to mount up, so I want to get stuff in where I can... plus, I can't let it stop it living as full a life as possible, can I? :)


T

Friday, 6 February 2015

Workin' 10 'til 4...

Back to work today! And who wouldn't miss looking at this stunning vista on a daily basis:

But no, seriously, I'm there on reduced hours and it was really nice to see everyone. I had already told everyone what was going on, so I don't think anyone is too embarrassed to ask me anything (plus as you might've gathered from reading this blog, I'm a rather open person anyway). Nice to feel useful and normal, plus have some sort of routine in my life. I think I'll be busy on non-time limited tasks that use my brain... which might be fun. I've also been issued with a new work laptop that I was irrationally pleased to acquire:

Possibly says a lot about my tech geekdom that I find this cute.

One difference to usual was getting my lunch signed off by the lymphoma nurse (Subway - all okay as long as its fresh!) and also giving the Chemo hotline (who I need to be in touch with whenever anything is slightly wrong) a quick call because I had a little headache. All fine though.

Another difference, perhaps a bit more pronounced, is that I guess the upside of work has become sort of a double edged sword now. A big part of working somewhere with lots of people my age is the social aspect of it - going out and having a good time on a Friday. And I can't now, which was sad. Well, I can, but I need to be vigilant of germs and crowded spaces... things that going out on a Friday night give you in abundance :(. Oh well, more than enough time to socialise when I'm all better, I tell myself - but I still feel a bit sad to be missing out.

This weekend, I'm doing not much tonight - think my Mum is coming by-  then watching the football tomorrow, and then on Sunday I may be having dinner with my friends. So keeping busy :).

Hope everyone has a nice weekend, too.
T

Wednesday, 4 February 2015

Feeling stronger

Today, I tried a longer walk and went out to Canary Wharf (which took about 20 minutes each way):


I was surprised, after yesterday when I was feeling a little weak when I went out, at feeling kind of fine on walking it. Maybe I felt a bit light headed and a bit weak at moments, but I think that was just over-analysis rather than actual fact. When I got there I got a very sinful vanilla latte and wispa gold to "celebrate" my achievement, albeit simultaneously negating the potential health benefit of my brisk walk.

I then went to the GP's for a chat en route home - they called me last night saying they needed to set up a wellbeing appointment, but it was really just a "how are you doing?" kind of thing with the doc. Nothing of note really - think they've got to see me as part of some sort of regulation for cancer sufferers under their care.

On the "suffering"... I think I'm approaching back to normal now :).
I guess this has all been about finding out how the cycle would go for me this time. For me it's been that you have a yucky few days laden with potential side effects at first - these are the days when you know the drugs are really at work inside you. 
Then, afterwards, it looks like it improves and clears up. 

There's been tangible shrinking of the nodes on my neck. I hope it's the same in my chest.

Today, on World Cancer Day, I think that I'm very lucky to have been diagnosed in a day and age when the anti-nausea drugs are potent and effective, and other side effects can be kept in check. I can only express my sympathy and admiration for those that struggled through chemo in bygone days when nausea and excessive vomiting were the norm for those undergoing treatment, alongside what I'm sure were other, horrific side effects.

I've finished both sets of anti-nausea drugs now for this cycle, so I think we're all good for a week or so until treatment next Friday.

I still feel a bit tired than usual, but there's not much else I can do about that. Just hope the effects stay on a level rather than intensifying over time.

Either way, I might try working Thursday - Thursday from here on rather than Friday, as is the plan currently. Instead of working, tomorrow I'll hazard a shopping trip at Stratford Westfield ,then return to work on Friday (10-4), maybe head to Bristol to see my Nan on the weekend (as chances may be limited later on), then work 10-4 Mon-Thur next week before chemo 2/8 on Friday.

Anyway, feeling stronger overall now. Can only be a plus.

T

Tuesday, 3 February 2015

Leaving the house

Went out today - just to the Tesco's down the road. It felt odd that it was the first time in 72 hours I'd been out. It does seem like a while to be indoors after chemo, but to be honest I was just staying in for a while to ensure I didn't have any real ill side-effects from the treatment. Apart from the nausea and tiredness I'd mentioned, there haven't been too many. I've also completed one of the anti-nausea drug cycles (the ondansetron), so I'm only on one tab (domperignon) now.

Anyway, back to the main theme. Going out was strange. I think, because I hadn't left my house in a few days, I was a bit weak. And it was cold. Nevertheless, I could feel a little bit like something was different in how I was dealing with the simple process of having a walk. I felt a bit tired, a little more spaced out - not horrendously bad or anything, but the chemo has definitely had a pronounced effect on how much I can do. And it was a little disconcerting, until I reasoned again that this, at least, means all the drugs are working.

I have also received this (right) little collection of home exercise kit that I ordered from Argos (off the back of cancelling my gym membership temporarily), and have begun to use it a bit. I've read in a few places (including Macmillan and the HL guide from the Lymphoma association) that exercise can help fight off the ill effects of cancer fatigue. That's an exercise/stability ball for a variety of exercises, a yoga mat for floor work (in a totally fetch purple and yellow colour scheme) and some dumbbell weights, for those who don't know what these items are :). I'll do my best to keep up a decent regimen and stay as healthy as I can - enhancing my fitness during this time off is no bad thing. And no, I'm not going to overdo it and "go silly" as a few family members have said!

In other news, tomorrow is World Cancer Day.
To "celebrate" a day I never thought would be quite so relevant to me this time last year - or, indeed, this time 3 months ago - I'll try a longer walk to Canary Wharf (~20 mins walk from my house). Once I get there, I'll buy myself something nice, then walk back. Should be okay.

The upshot of all this is that I'm keen to see what I can and can't do. I guess, with returning to work in sight on Friday and a possible trip to Stratford Westfield on Thursday, I've gotta build up to it. If others have worked and maintained a fairly active lifestyle through this, I'm going to try to do it, too.

In any case, one thing's for sure: I'm not going to let this limit me to sitting in my flat feeling sorry for myself, shorn of my independence and mobility (as much as I love sitting here watching daytime TV and ploughing through my Xbox games at greater pace than usual... has anyone played Far Cry 4? It's excellent)

Anyway, onwards and upwards.
T

Sunday, 1 February 2015

The first 48 hours

Hello

Just thought I'd write an update on how the first 48 hours have gone.

In sum: not as bad as I thought it was going to be. I had envisioned myself lying in bed unable to move. As it turned out, that bit was only on the night after I got the treatment; for the rest of the time, I've been relatively sound.

Here's what happened.

On the night after the treatment, as I've said before, I was pretty damn bad. Unfortunately, the strong anti-nausea tablets I've been prescribed - domperidone (aka domperignon) and ondansetron - had not managed to get to my gut on the night on account of me hurling them straight back out again. I also had the chills pretty bad. I was thinking to myself "if this is how it's going to be for the next little while, it's going to be really bad" They have a 24 hour haematology helpline with regard to what's going on with me, and I could hear my Dad sounding a little panicked on the phone to them... obviously it's all new territory for us. They were apparently very good, and just said that I had to ride it out... I can just about remember Dad saying "there's no quick fix for this, Tom" and feeling a bit dejected.

But, after finding a comfortable position on my really aching back (aches from the marrow biopsy), I kind of settled after a while and stopped feeling nauseous. I felt relieved. I even managed some bread. And, from there, it all got a bit better.

One incredible remedy for all this kind of stuff is ginger. I've been downing litres (well, cups) of green tea and ginger... it's amazing how much of a stabilising effect this has on the belly - especially a sensitive chemo patient such as me :)

Since that first rocky few hours, the last two days I've been surprised. I've felt relatively strong. The nausea's been kept in check by pills, I'm monitoring my temperature daily, and I'm keeping the regimen up.
I'm recording everything I'm taking and my temp ---->

The only detectable thing other than nausea (the chills abated on the first night) is fairly pronounced tiredness.

Now, I'm not used to tiredness at all. I'm used to being constantly switched on like a vacancy sign at a dodgy motel, buzzing away. I'm the sort of kid who would never sleep on trains, car rides or planes, for example. I could stay up late and watch Match of the Day from an early age. But, instead of that feeling of constant wakefulness, I can feel a slight shadow over my waking psyche, like something's not quite right at the moment, which'll probably be with me for a little while. I'm not falling asleep at the drop of a hat or anything, but I feel like I could if I didn't consciously try to get up and do stuff - even if it is just going on my Xbox. It's a bit disconcerting, but definitely not insurmountable.

All in all, if this encroaching sense tiredness and containable nausea are the only side-effects, I'll take them!

And also - MY LUMPS ARE GOING DOWN A BIT! I CAN SEE MY JAWLINE ON MY LEFT SIDE!!
[Okay, I sound a bit exuberant but, apart from tiredness, the neck lumps have been the key symbol of my cancer for the last few weeks. It's just so good to see the little buggers slowly being destroyed]

This week, I'm going to keep a watch on myself for a few more days, see if I can see peoples, then, hopefully, return to work for a day trial (10-4 again) on Friday! Just hope I can stave off the boredom... but I do feel quite tired, so my days are shorter anyway, meaning I don't have as much time to waste as I normally do :) every cloud...

T

Saturday, 31 January 2015

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

Thursday, 29 January 2015

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

Wednesday, 28 January 2015

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

Tuesday, 27 January 2015

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


Sunday, 25 January 2015

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

Friday, 23 January 2015

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

Wednesday, 21 January 2015

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

Tuesday, 20 January 2015

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