ABVD - 5/8

not noticeable anymore

All done and not as bad as I thought (again). The anti-nausea drugs I've been having are really doing the trick; I only feel actually awful at the very end of treatment, and after that I am normally just waiting on yet another anti-nausea drug (I have 3 on the go at the moment) to kick in in order for me to feel okay.

I got in about 10, started being treated at 12 and was out by 5, so all in all quite good. I even managed to get up in the evening - normally, I just feel frightfully awful and stay in bed all night - to watch the England game and eat some marmite on toast (random craving). So all in all, not the worst thing to do.

I also have been given yet another new tablet called lansoprozole to deal with my stomach - it's been a bit acidy recently (necessitating a daily diet of gaviscon) so, hopefully, it'll help.

I was feeling my neck this morning and it's so true what the haematologist said - there's nothing there really now. I took a picture of myself yesterday which also shows this, so I'm happy.

bye bye hair

So far this morning, in terms of side effects the only real thing I've noticed is hair. Hair everywhere when I woke up; all over my bed and all over my t shirt and, now, all over my  hoodie. I guess it's a temporary parting of the ways for now as I inexorably accelerate toward baldness after the most recent treatment.

The other little thing is that the mucus in my throat (yummy) is also drying out a bit now so it can often feel a bit raw when I swallow - like two pieces of flesh rubbing together without an interlocutor. Hopefully it's temporary!

Will update soon - I'll just be in for the next ~72 hours playing my PlayStation but I expect I'll have to make an enforced visit to a barbers' soon to get my head shaved properly... let you know how it looks soon.

Anyway, 5/8 down now (hopefully out of 8 still, as I said yesterday) so I'm in the majority now. 3 more to go... hopefully a doddle.

T

interim PET scan

So I went to see the haematologist yesterday

The physical examination was all good. She said she couldn't feel any nodes anywhere on my body (as opposed to the last cycle) and I looked like I was taking everything well. I'm getting some new pills (more!) to help me cope with the bouts of indigestion I've been getting in between.

Hospital clothes don't work

The big news is that I had an interim PET scan this morning. It was a bit of a faff because I got up early to get there and they didn't have the radioactive sugar they needed, meaning I had to walk back to work (a 25 min stroll) to get my laptop before returning again later on... the day was a bit buggered up.

At least I got to wear my favourite gowns again.

The scan, anyway, was fairly smooth - usual procedure of being injected with the sugar, going to lie in a dark room for 45 mins or so, then being put through a whirring scanner. Remember, I was injected with the sugar to see what parts of my body are metabolising - from how I understand it, cancerous cells seem to show up as metabolising in this regard in the PET results.

Anyway, the results of this scan will dictate which path my treatment will take. As it stands, there are two:

• The course of radiotherapy I was initially promised after 4 cycles (i.e. finishing in May, as I've been anticipating) 

OR

• I have no radiotherapy and have an extra 2 cycles, taking me up to a total of 6 (i.e. finishing in July)

Obviously, I'm hopeful of the former - it all depends how well my body has been performing in terms of responding to chemo. As I've said, visually, externally it appears responsive. Let's just hope it's the same internally.

ABVD 5/8 tomorrow. I hope it's still out of 8. Otherwise it's not even halfway if it's out of 12 (option B), which did unsettle me a bit yesterday. But anyway. 

This cycle I'm ruining fruitellas.  All in all, feeling a little apprehensive but just keen to continue the slog... obviously a little wary of how crap I'll feel tomorrow night but apart from that it's head down, onwards and upwards

See you on the other side... again

No, I haven't shaved my legs...

It's the bloody chemo!

Seriously, look:

I look like I have the legs of an air stewardess... sigh :)

I'm going to go skinhead I think this week too. My hair is getting patchy and looks a bit leopard like...

Apart from slightly patchy hair, I'm all okay. I have a meeting with the haematologist on Wednesday in the run up to cycle 3 (hopefully just a catch up and formality for them to see how I'm doing). I think I'll see if I can get an interim PET scan from them to see how it's going internally. I don't know if it's possible but it'd be nice to know. I guess it's all good before ABVD 5/8 this Friday.

Will update on Wednesday

Halfway mark update // 7 weeks to go

Due to overwhelming public demand (literally 1 lovely person has asked me why I have been light on the blogging!) I thought I'd write a quick update :). As of today, there are 7 weeks to go until the end of chemo.

I'm doing okay after a fairly pain free chemo last Friday, as reported. I'm back in work today.

Here's a general update on everything in any case:

negligible neck nodes

My neck nodes are mostly gone - I received a letter from the consultant to my GP I'd been CC'd in on that said she agreed that my nodes were persisting but clearly receding. I hope it continues. There's some swelling beneath my neck where the biopsy was which is likely to be healing after the op, but still some bits and pieces of "hard tissue" are around if I grab around my neck where the swellings were previously (not that I do this habitually). I'm hopeful that this is just scar tissue now and that I am now in convalescence rather than still cancerous. I also  try to imagine my chest nodes diminishing in size too. I'll ask for an interim PET scan when I'm back in to see the consultant next Wednesday.

weird hair

I've been feeling the tiredness a lot more this cycle, finding myself feeling like I could sleep around 7/8pm every evening. I can easily sleep at 10-11pmish (still weird for me) and wake up around 11am the next day, yet still feel tired around the same time the next night. It's really odd to feel so fatigued the whole time - hopefully I'll keep being able to battle it back and get on with things. I'm naturally a little bit extroverted (of course), so it's good for me to keep seeing friends and getting on with it as I draw energy from social occasions like a vampire drawing blood :)

My hair shedding continues apace; my (white) bedsheet is beginning to resemble the floor of a barber's shop, and there's lots of little hairs basically everywhere I go! I've been reassured it doesn't look too different by people who have seen me, but it's definitely markedly thinner on top - it's a bit weird too because it's still growing in some places yet has stopped/begun to fall out in others, meaning it's all a bit funky and uneven overall... it's kind of odd basically, but I'm used to the fall out. I'd anticipate losing most of it before the end of chemo at this rate, but I'm mostly prepared for it and will get it shaved again next week I think - ABVD 5 will likely proliferate the hairloss further.

I also had the  nasty, chemical taste in my mouth this week until about Wednesday. Monday was awful, I couldn't shift it no matter what I did - it basically tastes like the alcohol gel handwash, if you've ever mistakenly licked your fingers after washing your hands with it... disgusting.

Mentally of course I'm still getting on with things. It's a nihilistic trudge but this is the reality I'm in and I have no choice but to continue on with things within the confines of the situation. It's okay, but I'm looking forward to having my normal life back again. Hopefully it won't be too long - 7 weeks isn't too long a time (that's when chemo is slated to end, anyway) - before I can feel like a normal person again. I'll definitely cherish the ordinary after all of this is done.

This week, I am working today (Friday 20/3) (as you can see I'm working hard currently by writing this blog), then Monday, Tuesday and Thursday next week. I'm in clinic next Wednesday for my check up pre cycle 3 (i.e. treatments 5 and 6) before ABVD 5 on Friday (dependent on the fighters in my blood - should be fine). I was going to go to Bristol this weekend to see my Nan but my Dad is unwell - no risk. I've seen a couple of friends this week but had to call off a lunch with another one because of sniffliness. Still not had to go to hospital outside of chemo and hoping this trend continues!

I'm staying strong, everyone. Onwards, upwards, light at the end of the tunnel in sight. 

(I'm beginning to hate these cliches !)

ABVD - 4/8

Surprisingly okay.

in the right place

I took my laptop in and distracted myself throughout the process and I was almost finished on the dacarbazine (drug four) before I knew it, which was really nice. It seems like my aprepitant (the new anti-sickness pills I'm on) are very effective and do me good.

The sweets I took with me really helped. The only thing I might have jinxed was my lunch of ham,cheese and pickle sandwiches which have now been tainted by association with chemo and feeling crappy... It makes me feel a bit sick typing those words, for example1

They also stuck the cannula in the right place (my left wrist) so I don't have any real pain today, which is nice.

I went to bed last night at 6 and stayed there - half waking half sleeping - until about 8am this morning. 

I feel a bit shaky but actually not all that bad at all today - a seamless chemo day was had. I hope they're all like that.

Time to relax on the PlayStation and recover.

T

Half way house

Tomorrow constitutes half way through my chemotherapy.

I'm closer to the end than the beginning, hopefully hurtling towards a successful conclusion to this rather harrowing segment of my life. And I'm happy about it. Or, at least, I will be once I've broached and then gotten through the next 36 hours or so.

It's silly (or it's not), but I'm almost as apprehensive before tomorrow today as I was the first time. I guess I'm just frightened by the languid inevitability of how **** I'll feel in 24 hours and the first few days of recovery - all over again.

I'm fearfully anticipating the poke of the needle into my vein, the salty tang of the saline across the back of my throat as my vein gets flushed and then the steady pump of those four drugs into my system, slowly building the acute nausea I've come to know so well.

Obviously I lighten it in my head by characterising it as a necessary evil; alongside the (continuing) hair loss and muscle wastage, it's just a necessary part and parcel of the crucible I need to go through before I can rebuild some semblance of normality. That's the goal I'm fighting toward and, to some degree, it'll be as easy as I can make it - although I'm apprehensive tonight, I have discovered mental resources within myself I did not even realise existed before this happened to me. It'll be more than enough to see me through.

Anyway, I'm all packed for tomorrow. I have sweets to allay the horrendous taste of the drugs. They're a new choice (Japanese sweets called Hi-Chews which I really like, a thoughtful gift from someone lovely); I have to rotate them because anything I eat during chemo gets destroyed for me by association with the nasty taste it's masking, becoming synonymous in my mind. For example, I feel sick even just thinking of eating the mint humbugs  I used for the first two chemos. I also have some ginger beer, hoping desperately that it will act alongside the anti-sickness pills to settle my stomach.

I keep feeling my neck at the crevasses between my right and the previously lumped up left. I can feel the main areas greatly diminished, but there's still a little way to go. I'll ask them for a scan when I go in to see the consultant in the next couple of weeks.

Right - here goes. One more into the breach, dear friends, to progress ourselves to 50% complete.

T

Chemo brain

If you know me you'll know I normally go at 100mph and like to think I'm the sharpest, smartest person in the room. Like to think.. I do have *some humility, I promise.

Today, whilst working, I found myself working slowly and forgetting whether I'd done the same thing a couple of times. I was looking for something in Tesco and found myself rechecking the same thing twice. It's never happened to me before. 

Since I started chemo, I've been feeling a little bit slow, a little bit disassociated. It's a little bit like I'm having trouble making connections between basic things - for example, yesterday, there were points where the conversation (not particularly deep or anything, just about normal things) would literally wash over me and I'd find myself feeling completely lost from it.

I spoke to one of my Macmillan buddies, asking her about what's happened to me. Here's what she said:

"[It's] another side effect: head feels full of cotton wool, can't follow conversations, forgetting words, takes an age to process information, emotionally disconnected. 

I felt like I was in a bubble and everyone else was outside the bubble and kept walking past not seeing me or talking to me. I felt like I'd never laugh again! And I like laughing. 

The chemo brain/fog stayed with me into early remission... it is a real pain when you're in the middle of it."

So there we go. Speaking to other members of the community on Macmillan confirms it. It's a real thing. I have "chemo brain" And, if I'm honest, it's all a tad scarier than I thought it would be.

I mean, I'd accepted and had appreciated that I would have some body discomfort. Some pain. And I've recently noticed that, despite trying to work out, muscles are wasting. 
But I hadn't really considered that my mental state would be altered and that my brain would slow down as my body goes through these shocks.

It's frustrating, frankly, and I feel bloody annoyed to be so doddery sometimes. I'm 25 not 75. As I've always felt more confident in my brain than my body - I was never the sort to think I could outrun or outfight someone, but I would always be confident I was smarter - this has been a fair bit harder to deal with. It's a pretty core part of who I am which is being strained by the chemo. 

For example, I used to start writing these blogs and the words would fly off my fingertips and a theme would form seamlessly, the thread of the narrative crafted in my mind with ease and conveyed, I hope, with eloquence on the (web)page. But I've had to reread and rewrite this entry quite a few times, which says something in itself. 

Of course, I accept it is inevitable as a part of my treatment in me getting better, a byproduct of the healing process. But still it's a bit more difficult than feeling a bit ill or a bit tired. I just hope it isn't lasting. Either way, I'll keep going - I'm sure I won't be trapped in this weird little state forever.

As I said, Sunday was 2 months before the end of chemo. It's six of one and half a dozen of the other, really - it can seem like a long time now, but it inexorably counts down and really isn't that long. There's *only two months of the football season left. Seems a lot closer in that context. 

So I'll keep willing myself using some mental resources I never knew I had. And I'll believe - feel - know - that I will be able to put the pieces of me together again at the end. After all, we only ever bend and break so we can put ourselves back together again.

T

2 months to go...

Just a quick one to say that in exactly two months, all being well, I'll be finished chemo...

Today, we ate a roast dinner and I am very full (and struggling to digest if I am honest)! Here's a few pics below:

Work this week, then 4/8 this Friday. Will write soon.

T

Still tired but feeling better

Just a quick one to say that, as with the weather, I've started to feel better and come out of the general malaise I was feeling last week.

It's such a nice day - here's the blue sky view from my balcony today:

Time to watch some football and enjoy today; roast dinner with friends tomorrow.

This week I'll return to work and try to have a few days of being as normal as possible. I'm still tired but I'm trying to get on with it as best I can. I can be a bit tetchy, too - probably a product of the sleepiness! I think it'll probably be this way throughout the rest of chemo now so I'll have to, as usual, adapt to survive. I'm sure I will.

Hair still malting everywhere too - a fair amount on my pillow and in the bath. But there's no bald patches yet really - maybe a sliver every here and there but apparently not noticeable to anyone other than me.

Will write after ABVD 2b - I'll be half way through by next Friday (it's treatment 4 out of 8). It's weird to think I've come so far, but still have half way to go. Kind of daunting - but maybe all a bit quicker in from here, like going down the slope after reaching the top of the mountain, or like getting to Friday once Wednesday is over :)

I've also not had any alcohol for 6 week too. Amazing.

Tom

Tough days

I'm not going to deny it. Yesterday was difficult. Probably my first day of being really hit down by everything. My nausea has gone now, as has the prickliness in my veins. But that's the physical symptoms. Mentally, it's been tough, and it's difficult to articulate how I'm doing on days like that.

[For easily worried relatives - I'm not suggesting I am depressed. I'm just using this to air some thoughts]

Let's have a go, though:

I guess before this point I'd been feeling like being off work and being at home with the Playstation was like a mini-holiday every few days; a bit of fun.

jaded cancer patient

This cycle it hasn't really felt like it. I've felt quite tired and a little more disassociated with  the world at large - especially as I see and hear about people's lives progressing all round me. To reuse an analogy, it feels a bit like a breakup - everything feels a little colourless and a little less meaningful, a bit like you're consciously waiting out time (which, of course, I am).

 I worry I'm losing touch with relevance. I worry about how my life has (necessarily) drifted in these 6 months, whereas everyone else's has progressed. Though - as one friend said, which made me snap out of it somewhat - maybe I am grievously overestimating how much people can get through in 6 months.

As usual, I'm not able to sleep properly either so my eyes are all darker than normal (see right). This is definitely not a good look for me. I'm also beginning to see my hair is falling out a bit more; I did a workout earlier on and saw a lot more hair in the bath than before.

It's all a bit difficult to eloquently express, I suppose. I know I shouldn't really feel down too much, and things could be worse. And, also, I guess it's healthy to feel upset. It's just such a long way to go still: I worked out that until May 8 (chemo 8) it's 65 days... 65... dear me. I can see a bit more why people say it's a battle, why people say it's a fight - it definitely feels like a nihilistic trudge.

Wow this is poorly written - I'll revisit this someday and prettify it.

I am better today. Obviously, I have no choice but to get on with it... and I'm looking forward to going back to work and getting my normal life back on course in a couple of months' time. As boring and straightforward as it was, it was still mine. And will be mine again. Just a bit better informed and infused with a bit more meaning.

I can't wait to break these cycles and beat cancer: f*ck off, cancer.

Onwards and upwards
T.

Cycle 2 - first impressions

It takes longer to get over it. I was okay-ish by Sunday night in cycle 1... was still quite feeling it yesterday and went to bed at 10 (unbelievably early for me!) - woke up at 10 today so I'm feeling a bit brighter and better which is a huge relief :)

There's a few things which have been plaguing me. One is a new one, the others are kind of recurrent.

The first is a weird prickly feeling in my veins in my lower arms. It's probably through where they've done the chemo through my hand and I'm using the muscles nearby (to grip a ps4 controller, mostly). It was keeping me awake on the Friday night after chemo, but it kind of makes sense when you figure the powerful drugs they were pumping through them. Either way, I'm going to ask that they don't put it in my hand again if possible. I did call this in and they said as long as I wasn't all swollen it was okay.

The second is a weird tug on my left temple. It's intermittent and might be related to anything really. Chemo makes you very suspicious of your body in general so I'm just keeping it under review and I'll call it in if it changes.

The third is my ever present nausea, especially if I think of Friday or even think about saline or salt water. My dad put some sealant up in the bathroom and the salty tang it gives off almost made me vom the first time I was in there. Awful.

All in all, it's taken me a day longer to feel better. But, as always, I'm generally positive about it all; this is all short term pain for a life time of gain, but I thought I'd record how I'm feeling right now anyway.

Oh yeah, and hair.. no real malting as of yet! Looks maybe a little thinner? But I don't see much drop off.. maybe I'll be one of those who doesn't lose it? Who knows :)

Onwards and upwards.
T