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 :)

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

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

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

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

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

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

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

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

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

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