While I try and urge my over-tired brain cells to come up with intelligent conversation, please bare with me. Writing this blog is cathartic, fun, indulgent and even intelligence boosting. I always maintain that I was a lot cleverer before, well, before I don't know what, but I'm not as clever as I used to be. I usually rely on the excuse that since I'm a journalist I use my daily word allowance up quite quickly at my desk, so by evening I am a bumbling moron. I think it might just be that fashion doesn't stimulate my brain like university and coursework and philosophy did (you don't say), so my grey matter isn't getting such a good work out these days. This extra curricular writing is definitely helping on that front, plus it's like a virtual support group, and since I'm not a support group kind of a person, I really appreciate the friendly email opportunities this digital journal presents.
But writing it nearing the end of my treatment - let me say that again, the end of my treatment - is challenging.
I've got two days of radiotherapy left, out of three weeks. My doctor said I would feel exhausted, I should think about not working through it, or having a couple of weeks off at the end. This is me we're talking about, I'm allergic to not working, so I did the sensible thing of going in part time as a happy compromise. I also switched hospitals so I'd be near work, which means travelling there every day anyway, which means it'd be silly not to pop to the office on my days off, since I'm right there...
So yes, I am quite tired. This intelligence boosting trick is not very effective these days, instead I am mildly aware that I'm babbling nonsense. This is a less commonly documented side effect of radio, along with these:
Tattoos. You don't tend to hear about this until they're standing over you with a needle and a biro (I don't think this is the literal technique, but its certainly along those old school prison variety lines), then you get various dots forever tattooed on your body, to perfectly line up the machine every time.
A) why use permanent ink? Fading ink does exist! Its what 16 year olds always plan to get as a token act of semi-rebellion. I have enough scars from this experience without adding three blue freckles to the equation.
B) why use blue? Brown ink does exist. If you're going to mimic a freckle, think human, not smurf...
Route boredom is more irritating than radiotherapy itself. When I was a student at Bristol University I liked the novelty of driving up the M4 for two hours the first couple of times. Then I started to recognise that tree that indicated another 97 miles to go, the service station sign that meant I was not quite half way there yet, until the trip was mind numbingly boring and dangerously sleep-inducing. In much the same way travelling across London for an hour every day to have a 5 minute Xray is so routinely rubbish I try to find novel ways of jazzing it up. So far I have invented 'beat the song', a race to get from bus stop to waiting room before the ipod shuffle song choice finishes.
Association Sadness I like to invent names for new afflictions. This one happens when I feel tired, as is expected of me, but then lump on slightly depressed too, because being tired reminds me I'm having treatment for cancer and makes me feel like a sick person again. Stupid I know, the tiredness is nothing compared to chemo, but I'm impatient for the not feeling tired, and knowing what it feels like to have a good few weeks of solid sprightliness before normal winter flu hits me or something sufficiently less stressful like that.
The good thing is radio is such a walk in the park compared to chemo that these whole three side effects are decidedly more 'meh' than 'ARGH', so I can forget about them long enough to enjoy the rest of my day. Until I try and put on a low cut - by which I mean slightly below collarbone - top, and am confronted by lopsided sunburn and a blue freckle.
Which brings me onto skin. I heard lots of horror stories about how my skin would go scaly/black/rock hard/dinosaur like/agonisingly painful, but unless I develop these symptoms in the next two days, I seem to have escaped relatively unscathed. The redness started creeping up after about a week, but its so mild I genuinely had to ask the radiographers if they were doing it right. I put my faith in their medical prowess that I'm not receiving a placebo, but my sensitive skin is kind of alright.
Uncomfortable, a bit unsightly in a 'Brits Abroad' kind of way, but generally OK. I put it down to the magic of Aloe Vera (as does my radiographer, but only on the sly, since they're not allowed to recommend it; There are no clinical trials that confirm it's good to use, but in their experience, everyone who uses it alongside the approved aqueous cream fares better skin-wise). I slather it on straight after treatment, then moisturise with aqueous after showers and before bed. The purest is best - anything less can cause a worse skin reaction, but this 99.9% stuff is amazing.
Where I failed quite miserably at chemotherapy, radio I pretty much excell at. On my first day my radiographer Beth said I was what they call a 'dream set up'. What this means I have no idea but praise for anything is always very nice. After the initial few sessions of hoiking my body about for ten minutes to line up the freckles, I seem to have got it down where I naturally lie in the right position, and every new day with minimal to no hoiking makes me feel inordinately proud. I find my achievements where I can... Today to add fuel to the smug fire I was told my skin was doing really really well, well done. A+ for me for radiotherapy 101.
So next week marks the start of my return to full time work. It's just the Tamoxifen to go now, which has its beauty challenges in itself, but at least I only have to travel to the kitchen for a glass of water to wash down this treatment. I can't wait to get stressed about normal things like a normal person once again and not waste my best outfits on a radiotherapy waiting room. Maybe I need a new back-to-work wardrobe?
But writing it nearing the end of my treatment - let me say that again, the end of my treatment - is challenging.
I've got two days of radiotherapy left, out of three weeks. My doctor said I would feel exhausted, I should think about not working through it, or having a couple of weeks off at the end. This is me we're talking about, I'm allergic to not working, so I did the sensible thing of going in part time as a happy compromise. I also switched hospitals so I'd be near work, which means travelling there every day anyway, which means it'd be silly not to pop to the office on my days off, since I'm right there...
So yes, I am quite tired. This intelligence boosting trick is not very effective these days, instead I am mildly aware that I'm babbling nonsense. This is a less commonly documented side effect of radio, along with these:
Tattoos. You don't tend to hear about this until they're standing over you with a needle and a biro (I don't think this is the literal technique, but its certainly along those old school prison variety lines), then you get various dots forever tattooed on your body, to perfectly line up the machine every time.
A) why use permanent ink? Fading ink does exist! Its what 16 year olds always plan to get as a token act of semi-rebellion. I have enough scars from this experience without adding three blue freckles to the equation.
B) why use blue? Brown ink does exist. If you're going to mimic a freckle, think human, not smurf...
Route boredom is more irritating than radiotherapy itself. When I was a student at Bristol University I liked the novelty of driving up the M4 for two hours the first couple of times. Then I started to recognise that tree that indicated another 97 miles to go, the service station sign that meant I was not quite half way there yet, until the trip was mind numbingly boring and dangerously sleep-inducing. In much the same way travelling across London for an hour every day to have a 5 minute Xray is so routinely rubbish I try to find novel ways of jazzing it up. So far I have invented 'beat the song', a race to get from bus stop to waiting room before the ipod shuffle song choice finishes.
Association Sadness I like to invent names for new afflictions. This one happens when I feel tired, as is expected of me, but then lump on slightly depressed too, because being tired reminds me I'm having treatment for cancer and makes me feel like a sick person again. Stupid I know, the tiredness is nothing compared to chemo, but I'm impatient for the not feeling tired, and knowing what it feels like to have a good few weeks of solid sprightliness before normal winter flu hits me or something sufficiently less stressful like that.
The good thing is radio is such a walk in the park compared to chemo that these whole three side effects are decidedly more 'meh' than 'ARGH', so I can forget about them long enough to enjoy the rest of my day. Until I try and put on a low cut - by which I mean slightly below collarbone - top, and am confronted by lopsided sunburn and a blue freckle.
Which brings me onto skin. I heard lots of horror stories about how my skin would go scaly/black/rock hard/dinosaur like/agonisingly painful, but unless I develop these symptoms in the next two days, I seem to have escaped relatively unscathed. The redness started creeping up after about a week, but its so mild I genuinely had to ask the radiographers if they were doing it right. I put my faith in their medical prowess that I'm not receiving a placebo, but my sensitive skin is kind of alright.
Uncomfortable, a bit unsightly in a 'Brits Abroad' kind of way, but generally OK. I put it down to the magic of Aloe Vera (as does my radiographer, but only on the sly, since they're not allowed to recommend it; There are no clinical trials that confirm it's good to use, but in their experience, everyone who uses it alongside the approved aqueous cream fares better skin-wise). I slather it on straight after treatment, then moisturise with aqueous after showers and before bed. The purest is best - anything less can cause a worse skin reaction, but this 99.9% stuff is amazing.
Where I failed quite miserably at chemotherapy, radio I pretty much excell at. On my first day my radiographer Beth said I was what they call a 'dream set up'. What this means I have no idea but praise for anything is always very nice. After the initial few sessions of hoiking my body about for ten minutes to line up the freckles, I seem to have got it down where I naturally lie in the right position, and every new day with minimal to no hoiking makes me feel inordinately proud. I find my achievements where I can... Today to add fuel to the smug fire I was told my skin was doing really really well, well done. A+ for me for radiotherapy 101.
So next week marks the start of my return to full time work. It's just the Tamoxifen to go now, which has its beauty challenges in itself, but at least I only have to travel to the kitchen for a glass of water to wash down this treatment. I can't wait to get stressed about normal things like a normal person once again and not waste my best outfits on a radiotherapy waiting room. Maybe I need a new back-to-work wardrobe?
Just finished reading your whole blog, it's so inspiring! I'm 29 and it's so nice to see someone else with a youthful, optimistic perspective on this whole thing. I start chemo next week and will definitely be referring to your blog throughout. Thank you!
ReplyDeleteI did everything in the reverse order as you - I did a year of Tamoxifen, then mastectomy, and now chemo (followed by the remaining 4 years of tamoxifen). At least for me, there have been literally zero side effects from tamoxifen. I wouldn't know I was taking it if I wasn't, well, taking it. But since it did shrink my tumors (ever so slightly) I do know it's doing something. Hopefully it'll be as easy for you, too!