radiology

I saw the consultant radiologist today, who said that I'm basically going to start getting zapped on the day after the late May bank hol for 3 weeks, concluding I guess around mid May... unbelievably, I'll hopefully be finished with treatment by mid June!!! OH EM GEE.

Radiology is, as the consultant put it, "not as bad as chemo, bluntly" - the key side effects sound like tiredness (I'm already knackered so this holds v little fear), skin irritation and a sore mouth/throat which sounds tantamount to a liquid diet for a few weeks to me.

The treatment will be Mon-Fri for 3 weeks, so 15 "fractions" of treatment. I will need a dental check up and also another scan (CT) beforehand. I will also need to have a mesh mould made of my face prior to treatment (which I'm obviously keeping as some quasi artistic item)

The radiotherapy is going to be targeted at both sides of my neck and right in the middle of the chest; the three main sites. It's not going to be a huge amount by any means, so I was told, but it'll still have an impact. The neck will get a bit irritated (see above). But the chest is the bigger impact, which is a little permanent - there's going to be minor scarring of the lungs which will be irreversible in the area to be zapped. But, they told me, it won't be noticeable

Anyway, it's sad, but, as the consultant said, they think this is the best source of treatment for me and most likely to knock the HL on head first time round. 

So yeah, I've signed up, basically.

6 weeks to go until I am done with cancer treatment. Hopefully forever. I'm really looking forward to it.

empathy for marathoners

I'm doing alright following Friday's high-temp incident. I'm quite tired in general, and am feeling a little bit fed up about everything. I couldn't sleep last night due to loud rain, and was woken up by people putting stuff onto the street this morning. Either way, I'm still a little more fed up than usual with my circumstances. However, I reckon it's to be expected to hit 'the wall' at some point

i'm one of these. figuratively

Seguing nicely on this metaphor, just a quick one to say that my balcony overlooked the London marathon today, and it was amazing to see the throngs of people running down the street (of course, it's kind of littered with rubbish now!) and also to listen to the wellwishers who were out to cheer on those running. I don't know whether people were there for someone in particular or just for the spectacle, but the amount of people with loudspeakers was quite cool, alongside the amount of well meaning but still semi-sexist language ("come on dahlin'" / "you can do it luv" / "keep goin' gawjus") being espoused by one especially audible - and visible - gentleman.

I thought, reflecting on people working hard physically below, that marathons and cancer treatment have a lot in common. You start with a smile, if a little trepidation. You endure countless ups and downs; moments of encouragement interspersed with occasional seconds of doubt. There are milestones; 1/4 through; 1/3; 1/2; 2/3; 3/4... 7/8. And, as light begins to shimmer from the end of the figurative tunnel, you paradoxically begin to feel whacked, yet know you can do it.

I'm almost there. I'm so tired, mentally and physically, but I know I can make it over the line and be better for it. Much like the marathoners.

T

ABVD - 7/8

1 more to go!!

Yesterday was the fastest and least sickness-inducing yet. I was having the drugs by 11:50 and was done by about 3, with not really too much nausea.

poor right hand :(

Unfortunately, we did discover yesterday that the vein in my right arm is shot to pieces (it wasn't bleeding as profusely as it should), meaning that my poor left had to be used for the FIFTH time. It was really quite painful getting the cannula in because the vein is really hardened now through overuse, and it took quite a while for it to acclimatise to having a needle in it (i.e. it was painful for about half an hour before I felt able to continue with the chemo).

Yesterday night, too, we had a mini crisis as my temperature soared to the heady heights of 37.7 degrees centigrade at 8:30pm - the highest I'd ever seen it on my little digithermometer. The chemo hotline was rung, though, and they said it was a fairly common reaction; I also am not neutropenic (I have sufficient "fighters" in my blood at the moment... surely dying off as the chemo washes around my system) so they weren't as worried about me as they would have been otherwise.
 An anxious wait ensued as we made plans to potentially go to A+E and be admitted for the first time. I was getting quite stressed between 8:30 and the next temperature at 9:30, I have to admit, because I was not really looking forward to more hospital, more prickly needles, more stuff in my veins.
Fortunately, by 9:30 my temperature was down to 37 on the dot, and, finally, at 10:30, down to 36.6.... relieved, I passed out. Only to awaken again at 12, 3, 5 and 7 to pee... the amount of water I'd drunk and also had pumped through me in saline form in the hospital is rather voluminous.

I've taken 4 pills already today. Ugh. But anyway, I don't feel too awful actually. Mouth is a bit yucky and I'm a bit fatigued, but, by now, I know that's to be expected. The overriding mantra is that there's LESS THAN TWO WEEKS TIL THE END OF CHEMO. I can't wait.

I'm seeing the radiotherapy specialist on Tuesday to plan out that stage of my treatment. I'll update then, if not before.

T

Consultant trip before cycle 4

Unimaginative title but lots of good news today.

The haematologist confirmed that I am in remission as far as she is concerned, and that my PET scan was negative (as per the letter I reported a while ago... but nice to be told in person).
As it is, this means that I will have the final two chemos (one on Friday, then the final one on May 8) followed by 3 weeks' worth of radiotherapy, probably starting mid May. The radiotherapy will be targeted at key areas (neck, chest) where the lymphs were enlarged back in January; I have an appointment with the oncologist responsible for that part of my treatment next Tuesday to ascertain the treatment plan.

So I'll be finished treatment in early June!

3 months from the end of treatment, I'll have a final scan which will determine my "final" outcome... I'll be being monitored every 3 months from the final outcome too for the next couple of years, too, slowly elongating to 6 months as I get further on out.

All in all, it's pretty damn good. I'm so close to the end now.

It's weird to think that I'll have a normal life again soon. It seems almost unfathomable now, a normal life. It's such a strange feeling, aspiring to return to some sense of normality...

My brain has become a bit stilted due to the chemo drugs and these blogs have stopped being flowing beacons of flowing prose. I'm looking forward to being able to think normally again.

stalking fatigue

I'm definitely feeling more tired as I go through these treatments. It's weird; it's like a kind of stalking tiredness beyond what I've ever felt before. It hasn't quite receded yet, despite being a few days in; I'm usually over it by now (I got back to work tomorrow) but it hasn't really been cleared up, despite me trying to sleep it out! Well, it can only get worse is the bad news... but there's only two treatments to go, which is the good news! 

It's strange how it has suddenly accumulated, but I guess it's not unexpected. As previously mentioned, I'm really thankful that I'm getting the longer slews of recovery right at the end, rather than throughout the process. It could've been so much worse.

I finish chemo - I hope - in THREE WEEKS from tomorrow!

less grumpy in the sun

Feeling better now - definitely by day four (when I've stopped taking aprepitant and ondansetron) I seem a lot more "normal";  yuckmouth has receded a little bit, my head feels more screwed on and my mood has improved. It's really warm in London - 23 degrees centigrade today, 24 tomorrow - which is inevitably lifting my mood further.

All in all, I feel quite good now. I had a nice little walk today; I'll try to get on to the exercise bike tomorrow and do some cardio.

I keep telling myself there's 2 more bad days to go - 2 more - and everything will be over. I can't wait to not take pills. I can't wait to be able to arrange something with my friends in evenings or on weekends without thinking about infection risks. I can't wait to resume my life....

But I'll keep taking it day by day. It's the best way to do this kind of thing. Otherwise it's too much for one's little brain. Especially one as perpetually frazzled as mine at the moment.

I'm 26... but birthday postponed!

Today I am 26. Thank you to all who have written me or phoned me or carded me.

Sadly, this day coincided with the most tiring day on the recovery schedule. The Sunday after Friday treatment is always a bit of a write-off. As much as I tried to be energetic and birthday-like, I am so lethargic.

I've come to the conclusion that, for this year, my birthday is to be postponed until later on in the summer when I can really enjoy it, rather than a day when I feel variously queasy, woozy and sleepy. Yuckmouth has also visited me in a big way - I've only really been able to taste a vague metallic taste all day.

Anyway, I know it's early on in the recovery cycle to be writing but I have to say that this treatment has been quite strongly felt in contrast to the previous five. I'm definitely far more tired and generally a bit addled by it all.

But all in all I am thankful. Thankful that this is only happening now, at treatment six. I've had five treatments that have been a trudge but not the kind of somnolent crash I'm feeling this time round.

I'm really looking forward to when this is all over - less than four weeks 'til the end of chemo - and when I can go out and enjoy a birthday in the sun without worrying about everything I do at the moment. And without days like these in my life.

So happy birthday to me. But to be celebrated belatedly. Not like this.

Onwards and upwards - not far to go now is the mantra!

T

ABVD - 6/8

Helloo

My treatment yesterday went very quickly; I was all finished by three!

I spoke to my cancer nurse as well yesterday who said that the complete remission news was very positive - of course - and also gave some clarity to everything:

• Complete remission means over 75% reduction in the mass of the infected areas. Interesting, eh? 
• Complete remission varies between people; some have partial (i.e. ~50%) remission; some have no response - so it's a good thing
• If I haven't lost my eyebrows by now, I'm not going to!
• After my radiotherapy, I'll have 3 months of recovery followed by a final scan, which will determine my Final Outcome. If I finish chemo in May and have 3 weeks of radio, this'll take me up to late June. I'd guess the PET would therefore be in September time.

Anyway, yesterday was a bit of a bad one in terms of nausea. I was almost delirious with it last night when I was in bed after getting in - rolling around and unable to find a spot that was comfortable until I tired myself out. Blugh :(

I think that the associative disgust is also really strong now for me nowadays; I felt sick the moment I sat down in the hospital to have my treatment. My body is just taking psychological cues from the surroundings and acting up.

It's a mental battle as much as anything now as I smash towards the finishing line - chemo is ended in less than 4 weeks now and, as I kept telling myself last night, it's almost over.

I feel much better this morning.

Tomorrow I am 26.

Tom

Another buzz cut

I've had my head shaved right down now. No crying this time, though!

thug life

I'd hoped that I could get through the final few treatments without having another one - where it was still present, my hair was growing back fairly evenly (save a easily concealed bald patch back by my crown). However, unfortunately, my hair had started to fall out right at the front in a big patch, with a clear patch developing over the last couple of nights which was pretty obvious, so I just thought **** it, best get it done.

I can't ever remember having hair this short! I guess I've gotten rather used to my circumstances now though; I didn't get all weepy telling the hairdresser to cut it to #1 this time, and happily explained to him that I was having chemo. It only occurred to me after I'd left the barber's that it might've been a bit of a shock for him to hear that I was going through it - to me, that just seems to everyday now.

I was back at work today and experiencing something odd. I've told them the good news and people were - and have been - congratulating me. It's kind of weird, but I think people expect me to be ecstatic or overjoyed; instead, I'm quite ambivalent about the whole thing. Maybe it's the trudge of treatment that has made me a bit nihilistic, but the feeling I felt in accepting people's congratulations was a bit fake. I'm hugely grateful for the amazing and heart-touching support I've received, but it did feel odd people congratulating me like I'd won a marathon or something and I felt oddly like a bit of a fraud... all I've done is just endure the chemo and the side effects, as anyone would. But I know people mean well and I still feel touched, despite the oddly incongruous feeling I'm recording here.

Anyway, no big deal, of course at my core I'm hugely relieved to be, apparently, cancer free. As I've said to people (I work in sport, remember), I feel like I've won the title but still have a few games left to play. Three more (I hope it's just the three) and radiotherapy still loom, just as the original plan stated. Maybe the consultant on the 22nd will give me different news but, as it is, it doesn't feel like much has changed (despite the fact that everything has).

Tom

Easter treat

Happy Easter, everyone.

Yum!

I went out to Bristol to see my Nan this weekend, which was nice as I hadn't had the chance to go and see her since I was diagnosed; I wasn't able to go down there at the last juncture as my Nan had a cough!

It was nice to be down there to see her. And, of course, be treated to one of her famous roast dinners over general catch up.

My family seemed surprised that I wasn't frail or pale - "looking well" was a constant refrain - which was nice for me to hear and, I suspect, them to see .


Anyway, further news.

I got back from my Nan's house to some mail - in particular, the update letter from my consultant to the GP.

On it was a general report about me, and then, below that, was a single, heart-lifting line:

In case you can't read that on your device, it says:

"PET scan from 26th March 2015 confirms complete metabolic remission."

I was kind of overwhelmed with emotion seeing it, but then kind of stabilised quite quickly as  I realised that I didn't know anything yet; it's still all to be, I guess, "revealed" on the next clinic visit on the 22nd April.

Either way, I think it means that I don't have cancer any more :).

Anything with the "r" word has to be good, right?

Will report back more as soon as I find out more, but, overall, I feel like it might all be looking like its coming to an end. 

I so, so hope it is.

april is the cruellest month...

... well, I hope not. In fact, in what I hope will be the obverse of TS Eliot's circumspect treatment of my birth month in his Waste Land, I can only be encouraged by the fact that this is my last full month of chemo (provided all goes well with the PET scan).

I've still retained a fair amount of my hair, but it's all prickly in many places all over my scalp now where my hair is down to just the ends. It's really odd and basically feels pretty uncomfortable when it rubs against anything - even my pillow.

Other side effects feel under control. I'd previously mentioned that I have a new drug called lanzoprozole, which has been highly effective in terms of keeping the indigestion in check.
I'm also finishing anti-nausea tabs today. In that regard, I actually haven't felt too horrific this time round... I hope the final three treatments are also like that.

So yeah, there we go. All in all, it's continuing to be a bit of a slog. Although I feel alright the vast majority of the time, I nonetheless have a persistent feeling of being a little frayed around the edges; a bit of constant fatigue that I find very difficult to shake - regardless of how early I climb into bed and however late I get up.

But I guess humans are adaptable, and you quickly familiarise yourself and accept the new conditions you live your life in. I guess I've adapted to my currently incredibly slow pace of life, with whole days lost without doing much except recovering. I've begun to forget about the active and outgoing life I used to have - it all seems so long ago I could go out without thinking about infection and being wary about that sneezing man on the tube. It seems so long ago I could go to the gym and then go to the pub with my friends afterwards. It all seems like such a distant, unattainable memory. Another life. I guess, someday, this one will seem equally distant and, probably, a little surreal to Future Super Healthy & Happy Tom.

As the weather improves, I'm more and more looking forward to this all being over - chemo is over 5 weeks as of Friday. As Mr Churchill said, "we must KBO":
Keep
Buggering
On
Well, not literally. But, metaphorically, I'm with you there, Winston. Super good advice.

Tom