“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!
5am Get out of bed, 9am arrive in Dublin, 9:30am eat leftover turkey-and-stuffing sandwich and sausage for breakfast in taxi to hospital, 10:45am locate correct wing of enormous hospital and have CAT scan and three boob tattoos all before 11:30am. Plane journey sitting next to the most vile, drunken chav duo from hell, then back to Manchester in time for dinner at a city bar, spot I’m a Celebrity… Get Me Out of Here! and Coronation Street actress Helen Flanagan out on the razzle dazzle with her mates and leave just as the paparazzi arrive… Bed by midnight. All in a day’s work for a dedicated cancer-fighter like me!
Apart from the paparazzi (who I think were there to photograph Miss Flanagan, rather than my dear self), I expect what most intrigued you from the above were the words “boob tattoo,” so let’s delve a little further into that subject. Disappointingly, the tattoos are not actually on my boobs. They are all in a line below my boobs – one in the very centre, and one on each side.
First, I lay on the machine while the big whirring CAT scan machine bobbed me under and took a few pics (this was painless and took two minutes). Then a young man called Owen (or Eoghan – I’m not at one with Irish spellings yet but will ask him next time) appeared as if from nowhere with a felt-tip pen and drew some lines on me in an X-marks-the-spot fashion. He and another lady called Olivia stuck some stickers on me and finally Owen/Eoghan tattooed me with a needle at the meetings of each of the three Xs. It wasn’t painless but was basically just the same pin-prick as a quick injection and was over in minutes.
Above-left, you can see what one of the tattoos on my side looked like yesterday after the tattooing took place (please excuse the bra marks). It looks sort of painful and bruised, but I can assure you it’s just ink and was not in the least bit painful. Fortunately the Xs washed off, and to the right you can see what the tats look like post-wash. I was kind of expecting them to be a little smaller – you can certainly see them – but I couldn’t care less. I now have three permanent scars from my cancer and three little tiny speck tattoos, and I love having the war wounds to remind me what I’ve been through. Something to show the grandkids, I s’pose…
I have just posted the pics of the tiny specks on my side as I have a feeling I might regret it if I post the one in the middle of my cleavage, so I won’t…
Meanwhile, it seems the lovely Miss Flanagan decided to go bra-less last night, according to the Daily Mail. I’m thinking maybe she was doing it in sympathy for me?
Phew! So yesterday I got back from an exhausting two-day tour of the UK and Ireland’s cancer hospitals.
It started with a 5am rise on Tuesday for my flight to Dublin with Mum, to meet the oncologist who’ll be looking after my radiotherapy treatment. By 9am I had trekked through two airports and endured a cramped Ryanair flight with a screaming, kicking child in the seat behind me, people coughing all around me and the constant intrusive din of Ryanair’s overhead advertising of refreshing J20, a selection of hot drinks and snacks and a very special, exclusive 2-for-1 scratch card deal. Let’s just say I understand why air travel is not recommend during chemotherapy treatment. It’s exhausting.
First up, I headed to work to see my colleagues and pick up my post before going to my hospital appointment. At 11:30, after greeting half of my department with a hug and being regaled with tales of how half of them had just got over the 24-hour vomiting bug that’s sweeping Britain and Ireland, I called my doctor for the results of Monday’s blood test and found out I was neutropenic again. My white blood cells and neutrophils had completely reversed their earlier gain and were so low that I had virtually no infection-fighting abilities and shouldn’t really be around anyone at all, let alone sitting on Ryanair flights and hugging germ-ridden workmates (no offense!). However, I was already in Dublin by that point and any damage had already been done, so the hospital said they’d test me when I got back to Manchester.
Next up, my appointment at St. Luke’s, a specialist cancer hospital in the leafy Dublin suburb of Rathgar. Now, for those of you who’ve been reading this blog since the beginning, you’ll know I was diagnosed at St. Vincent’s, which is a large hospital in Dublin, and I was expecting something similar. But as soon as we pulled up in the taxi outside St. Luke’s, I could see it was different. You can’t really tell from the photo to the left but it was more like a quaint old people’s home or an American chapel than a hospital – just one storey high and with a very friendly, intimate vibe. I loved it immediately. (Well, as much as it’s possible to love a hospital where you’re about to be blasted to pieces with radiation).
I walked up to reception and said “Hi, I’ve got an appointment with Dr McVey” and the response from the reception desk was a very hearty, smiley, “Ah, you must be Laura!”
Honestly, I have never felt so welcome (even at a hotel, never mind at a hospital!) It turns out I had been in touch with the friendly woman on reception via email, and when she saw me with my little wheelie suitcase she realised I was from out of town and put two and two together that I must be the young British girl coming over for radiotherapy. But still! What lovely people.
Unfortunately, after all that, it turns out I won’t be able to have my radiotherapy at St. Luke’s because they couldn’t fit me in on the public system so I have to go privately at St. Vincent’s instead, but that’s fine because it’s closer to work and my flat. I’ll write a separate post about my radiotherapy treatment plan because it’s too much information for this post, but basically I should start on 2nd Jan and finish at the end of February, with 33 radio sessions.
Flying Back to Manchester
On the flight home, with Aer Lingus this time, I was momentarily delighted when I saw that we were sitting in the emergency exit seats, i.e. plenty of leg room and as much space as possible away from my fellow passengers with their various vomiting bugs and winter flu. The delight was soon snatched away from me, though, when your lady from Aer Lingus looked at me, gestured towards the window I was sitting next to and said “You’re guarding the emergency exit there, are you willing and able to initiate an evacuation in an emergency?” (You see, I had taken off my wig by this point and was wearing a snazzy purple beanie and I obviously screamed “cancer patient/invalid” to her.)
I paused for a moment, recalling the opening scenes from series 1 of LOST. Was I really strong enough, after six rounds of chemo and one exhausting day of travel, to lift a 15kg aeroplane door off its hinges in a crash and lead my fellow passengers down the inflatable slide into the sea, making sure they all took off their heels so as not to puncture it?
“Yes,” I finally said. I was too exhausted to move and I really didn’t care that much about my fellow passengers anyway. (Apart from Mum, and I’d help her down the inflatable slide first anyway). Plus the evacuation procedure looked simple enough.
“Please ensure all electronic devices and mobile phones are switched off,” the cabin attendant said, eventually, preparing for take off.
“Oh NO!” Mum exclaimed from the seat next to me. She had left her mobile phone on, and the cabin lady had insisted we put our bags up in the overhead cabins so as not to block the emergency exit, and now we were all firmly belted in and ready for take-off. “What should I do?” she said, looking at me for answers.
I was in two minds. I knew Mum’s phone was unlikely to cause a crash during our 40-minute flight to Manchester, but I wanted to avoid any increased risk that I would have to get off my poor chemo-sapped arse and shuffle 100-odd passengers out of that emergency exit, so eventually we asked the cabin lady to get Mum’s bag down so she could switch her phone off.
The plane did not crash. We made it safely to Manchester. Then I got a paper cut from one of the items of my mail I’d picked up from the office. Will it ever end?!
Back to the Christie
Luckily, we had the good sense to stay overnight in Manchester on Tuesday, otherwise I don’t think I’d have even had enough strength to get myself back there on Wednesday (purely due to tiredness and still fighting this infection). I was in for my three-week post-chemo check-up, which truly marks the end of chemotherapy – hooray!
Because I was neutropenic on Monday, I went in for another blood test on Wednesday. Unfortunately, I was dehydrated from our overnight stay in a stuffy hotel room (I know people commit suicide sometimes but I really wish hotel rooms had openable windows…) and it took three painful attempts before the nurses could get blood from me. Yuck! Seriously, I must have had more than 100 needle injections so far in 2012.
Then followed a tense wait for my blood count results. If my white blood cells and neutrophils went down from Monday, I would have to be admitted as an inpatient and be hooked up to a drip again for a few days in hospital – possibly spending Christmas Day at the Christie Clinic. But if they went up, I would be allowed to go home. So you can only imagine how relieved I was when the doctor told me they’d gone up. Not exactly by much, but honestly, I couldn’t care less as long as I was able to go home.
Now please let me not have picked up any vomiting bugs in the past two days! (Not that it matters anyway, seeing as the world is going to end tomorrow…)