“Boob Tattoos, Five-Centimetre Soup and 66 Grays of Radiation: A Radiotherapy Diary” – my latest blog for the Huffington Post:
18 down, 15 to go…
Technically, that means I’m more than half-way through my radiotherapy sessions, but I still have 1-2 months of lethargy and sore skin ahead of me. Still, at least there are only 15 more hospital visits to go, and I’ll be particularly glad to say good riddance to the late-night trips to St. Vincent’s! (A lot of my radiotherapy sessions are after 8pm because the machines are in maintenance during the day).
After three weeks of feeling spritely, it’s safe to say the tiredness has officially kicked in. It hit me like a brick wall mid-last week and I’ve been feeling sleepy ever since. It’s not quite into the realms of chemotherapy exhaustion, but my eyelids feel heavy and I can see myself becoming partial to afternoon naps. In a month’s time I may be like a walking zombie. On the plus side, though, my skin is still only very slightly red and I’m not feeling any soreness from the radiotherapy.
The highlight of my week was when a lady asked me how I did my eyeliner. As all of my girlfriends will testify, I have never been able to do make-up, particularly not eyeliner, so the lady’s question came as something of a small triumph to me. Fair enough, she was a lady in the hospital, whose husband was having radiotherapy, and not some fashionista on the streets of Dublin, but nevertheless I gave myself a small pat on the back. If having cancer has taught me nothing else, at least it’s shown me how to do eyeliner.
Other highlights of the week involved the radiotherapy computer breaking down and causing a waiting-room backlog, sparking a rare conversation among patients; witnessing 13 seconds of snow in Dublin from the office window, while all my friends and family in the UK had several inches of the stuff; being caught in a horizontal hailstorm that materialised just moments after perfect blue sky and sunshine earlier today; and being told by the heavy-accent Irish guy who came out to fix my TV that I have a ‘tick accent’. Other than that, it’s been pretty uneventful.
On the hair-front, I was afforded the opportunity for a rare back-of-head shot this weekend, on account of having a visitor from London, so I seized the chance. As you can see, I do have a bit of hair, but it’s slow progress. The good news is it’s growing back brunette, rather than grey or ginger. (I’ve mentioned previously that people’s hair can grow back a completely different colour after chemo, and very often grows back curly before it goes straight).
As you can see in the second photo, I still have plenty around the sides, including the partial resurgence of the famous Pricey sideburns, but still no sign of anything on top. (Please excuse the eyebrow situation – a result of the aforementioned horizontal hailstorm).
The green shoots, it seems, are appearing in all the wrong places, as I realised this morning I suddenly have rather hairy legs. Seriously?! Firstly, it took me just three weeks to lose every strand of hair on my head, yet pretty much every strand of hair on my arms remains strong and sturdy, 6 months after starting chemo. And then, just when I want my head hair to grow back in a hurry, I go and get hairy legs! Where is the justice? I’m going to have to start shaving again!
Another week of radiotherapy went by and I still haven’t really started feeling the effects. At some point soon, one of my boobs should go all red and sunburnt-looking while the other one remains its usual pinky self, but at the moment they’re both looking identical (except for the shark-bite scar from my surgery on the left one). I’m not feeling any pain or irritation and I don’t think the fatigue has really set in yet either. I’m still tired from the chemo and I can’t manage a lot of physical activity, but I haven’t got to the point where I need to sleep in the afternoons yet.
It’s almost two months since the final chemo and my hair still isn’t making much progress. As you can see in the photo above, there’s just a bit of fluff growing on the sides (and back) of my head, but it’s still really bald on top. I’m thinking I’ll have to start some sort of new trend for shaving a skunk-like panel into the middle of one’s head and just keeping the hair at the sides – anyone fancy joining me in that?!
Seriously though, there is no sign of any new eyebrows or eyelashes growing and it’s starting to get me down a bit. I don’t think I ever realised when I first lost my hair that it would be almost a year before I had enough hair again to grow a pixie, but that’s exactly what it’s going to be. So it’s a good job I invested in some quality wigs, as they are finally getting worn on a regular basis with me going to work every day. My target is to go to work wigless in a month’s time, though.
I’ve been conducting a silent and unofficial poll of my wigs at work this week and it seems the people’s firm favourite is ‘Joana‘ (pictured right) – funnily enough, the wig I’ve worn the least in all my five months of baldheadedness. So I got glammed up with Joana for my first proper big night out since the pre-cancer days last night and I actually almost felt I got a little bit of my confidence back.
Towards the final strait of cancer treatment, people tend to say “Oh, you’re almost finished now!” “You’re on the final strait!” “You’re back to normal now” etc etc. But it’s actually a great big myth. This stage of treatment (I won’t call it the ‘final’ stage, because my treatment will essentially go on for the rest of my life) has probably been the hardest for me. Even though I found chemotherapy infinitely more physically demanding and challenging than radiotherapy, I am finding this stage difficult for other reasons. My whole cancer treatment has been going on for so long now, it’s hard not to feel tired of it, and it’s particularly tough to see light at the end of the tunnel. The effect on my appearance is also at its greatest, but I’m no longer able to just wallow all day in the comfort of my own home and just be a cancer patient. Instead, I’m effectively living a normal life but I don’t look or feel normal, so it’s tough. Still, I know time will fly.
One of the silver linings of my week was being able to walk along the beach in Dublin to get to the hospital. It’s about a 50-minute walk from my work to St. Vincent’s and the views are beautiful, especially when the sun is setting, around 4:30pm. (Long winter…) I’m glad I took pictures early in the week when I did, because I’ve had to take taxis ever since Tuesday, when it started poured with torrential, sideways rain, hail and sleet and blew gailforce winds that nearly knocked me into the canal. Not exactly strolling weather.
Finally, I took the nutritionist‘s advice and bought an expensive juicer from UKjuicers.com. As you can see, it’s an intriguing contraption but I’ve used up all the vegetables and fruit in my flat and made the most amazing juices (apple, carrot and ginger being my current fave) in the past few days, so I think I’ll get plenty of use out of it. I’ve done pretty well increasing my fruit-and-veg intake in 2013 but my dairy-free diet is failing miserably at the moment. I haven’t given up hope, but somehow rice milk in my tea just isn’t cutting it. Still, one step at a time and I’ll get there in the end..
You may not think that sounds that great, but anyone who’s ever lived with me knows I like nothing better than a pair of boiled (or poached) eggs of a weekend lunchtime and I’ve been deprived of this pleasure for FIVE WHOLE MONTHS. Why? Because chemotherapy is like pregnancy – you can’t drink (much) alcohol, you can’t eat soft cheese, raw fish, live yoghurt or soft-boiled eggs, because of the risk of infection. Anyway, nobody told me at what point it’s ok to start eating foods off the banned list again, but it’s been 6 weeks since my last chemo, so I figured I would allow myself the pleasure on this otherwise joyless weekend. And I haven’t vomited yet, which is promising.
Anyway, back to radiotherapy. Week two is officially done. Eight (sessions) down, 25 to go. This week during my daily blasts of radiation I was treated to the likes of Alicia Keys, Coldplay, Robbie Williams and even Fairground Attraction (“It’s got to be-e-e-e-e-e-e per-fect, yeah”) – I can’t say these are my favourite musical artists, but fortunately the radiation sessions were short and sweet and I didn’t have to listen to Coldplay’s warblings for long.
The major development of the week is that I went back to work – after five months off. I’m working in the mornings and going for radiation sessions followed by rest in the afternoons, which is a perfect set-up as I think I’d go stir-crazy if I was at home the entire time, but I do need the rest. Some people work during radiotherapy, while others don’t, depending on the side effects, but the tiredness hasn’t really set in yet so I’m happy to be able to go to work. Fortunately, I also work at a place that provides the most magnificent catering, so I’ve been treating myself to delicious healthy breakfasts of scrambled egg, grilled tomato, spinach and mushrooms, and they’ve even provided me with rice milk to help me along with me no-dairy crusade.
On Tuesday I arrived at the hospital a little early, so I decided to visit the breast care nurses who were there when I was first diagnosed, at this very hospital (St. Vincent’s, Dublin), more than six months ago.
As I approached the second floor of the hospital where the breast care department is, I could see the women sitting in the waiting room outside the very room where I was diagnosed. Some of them would be waiting there for their loved ones, others might be just about to get diagnosed – just about to walk into a room and be told the news that shakes up their entire world and changes the rest of their lives. Needless to say, it was quite emotional for me, returning there. I even went into the room where I received the shocking diagnosis on June 22 last year, and I just about managed not to cry.
Aside from being back at work, being back in Dublin after six months is quite strange for me, as I had only just moved here when I was diagnosed. It’s like the City That Stood Still. Basically, everything that was happening in my life before I left Dublin was frozen in time and it’s all hit me all over again now that I’m back, as if the last six months never happened. Only I know they did, because I only have to catch a glimpse of my reflection in the mirror to see the hairless face and I know I’m still a cancer patient. That said, it’s great to be back in my apartment and back at work, living a semi-normal life.
On Wednesday I had the bright idea that I would start cycling to work. It’s only a 10-minute walk so I figured cycling it would be even quicker. My bike has been babysat for the past six months by my very kind colleagues and my aim was to eventually be able to cycle it to the hospital each day (a 50-minute walk).
Bad idea. Whereas I thought I was regaining my fitness pretty quickly and have been walking around at my usual pre-cancer pace, it seems I am far from fit and have lost all the muscle mass in my thighs. The 10-minute cycle to work almost killed me. Not only because I nearly had to stop in traffic I was so puffed out, but also because I have forgotten everything they taught me in my primary school Cycle Safety course. So the bike is now firmly parked once again inside my apartment and will gradually be taken on further outings once I start feeling fitter.
On the hair front, I have been wearing wigs all week because I am still looking horribly patchy and bald. While I cannot wait for the day when I can stop wearing wigs and just go out with my bare head with an even layering of hair, at least I can say the wigs don’t give me headaches any more. Plus, even though they all know I’ve had chemotherapy for the past five months and am bald as a baby, that didn’t stop one of my closest colleagues from saying he didn’t even realise I was wearing a wig. So at least I’ve got a few people fooled!
New Year, new cancer treatment…
Rounds of radiotherapy done: 3
Rounds of radiotherapy to go: 30
Feeling: Pretty good!
I arrived at the Herbert Wing of St. Vincent’s hospital, Dublin, on Jan. 2 for my first radiotherapy session and was shown almost straight away into one of the radiation rooms (unmissable due to the above sign). Inside the big, spacious room full of machinery, two lovely Irish ladies explained a little about what they were going to do, while I stripped off my top half and changed into the attractive and somewhat Christmassy white robe with red and white patterns (you can’t quite see the Christmassy-ness in the below photo). I then lay on top of the platform/bed you can see in the photo and put my arms into the red arm-rests above my head while the two of them fiddled around with machinery and called out various different numbers. (A lot like being at the dentist’s).
I’m lying on my back and can see three green laser beams – one directly above my head and one to the left and right of the room. These green laser beams line up exactly with the mini tattoo specks in the middle of my body and on my left and right sides, and this in turn lines up the equipment. Once it was all lined up, the girls quickly exited the room and proceeded to control the radiation machinery remotely (so as not to zap themselves in the process).
In the below photo, you can see the large machine above my head. The round plate thing detaches from this and rotates into different positions while giving me the radiation from a sideways position so as not to give too much zapping to my lungs and heart. It spent maybe five minutes on my left side and five minutes on the right side, while I just lay there, still as a sleeping lion, listening to One Direction on the CD player, having a whale of a time. (I had read in one of the radiotherapy booklets that you can take your own CDs for them to play while you wait, but frankly with the likes of 1D on the menu, I don’t think I’ll be needing to.)
After about 10 minutes, it was all done and I got dressed again and headed home. Meanwhile Mum, who came with me for the first few days and has now gone back to England, made friends in the waiting room and managed to get the entire verbal Tourist Guide to Dublin from the very friendly pal of a fellow patient.
On Jan. 3, I went back for round two. This time I was in a different room and Duffy was playing on the CD player. Two different lovely Irish ladies (I think they said there are five in total, so I knew I’d have met them all by day three) fiddled around with the machinery this time and called out the numbers, then they fled for about 10 minutes while the machines buzzed around me and I got radiated.
Jan. 4, much of the same. I was in room two again and Duffy was still on the CD player (I fear they peaked with One Direction on Wednesday and nothing else they play will ever live up to it). This time, the girls were back in the room within about five minutes and I said “That was quick!” It turns out the part where I’m receiving the radiation only takes about two minutes. Radiation is measured in units called “grays” and I have two grays each time. Two grays, it seems, takes about two minutes to deliver, and this time they didn’t need to take any photos with the machine, so I was in and out faster than Duffy could warble something about Warwick Avenue.
And that was that. I get the weekend off then it’s more of the same for the next six weeks, every single week day. The main side effects of radiation are extreme tiredness – which I’m told will get worse and worse, peaking about two weeks after the last session (i.e. beginning of March), and red, sore, burnt skin in the area receiving the radiation. This takes a couple of weeks to kick in, so in about two weeks I’ll have a really red, burnt, painful breast to look forward to! I can’t use deodorant (so apologies to my workmates if I stink) or underwired bras or perfume around the area, and I have to lather it in pure aloe vera gel or E45 cream twice a day. I already feel like I have a little ‘prickly heat’ in the area, but it may just be the association effect of the aloe vera gel, which I only ever use when I’m sunburnt.
Apart from that, it feels great to be back in Dublin and back in my apartment, living a more ‘normal’ life. Yesterday I went for my first run since the end of June – I ran about a mile and didn’t die, so that’s progress! A week or so ago, I could barely walk up a flight of stairs without nearly keeling over, so my fitness is coming back fast.
Despite the fact that chemo finished nearly six weeks ago, I am still bald as a baby and looking a bit like a baby chick again with short hair at the back and sides but nothing on top – not a good look! I’m hoping it will start growing back as proper ‘stubble’ soon and I’ll be able to go out sporting the Sinead look, but for now I think it’s wigs all the way… Roll on the next six months so I can have my pixie back!