“Boob Tattoos, Five-Centimetre Soup and 66 Grays of Radiation: A Radiotherapy Diary” – my latest blog for the Huffington Post:
I’ll never forget Valentine’s Day 2012 because it was the day I went to the Clinica del Sol private hospital in Buenos Aires to get that lump in my breast seen to. There was nothing romantic about getting my boobs out in front of the grey-haired old male Argentine doctor, nor was it particularly sexy having them squashed like pancakes into the vice-like clamp of the mammogram machine. But hey, at least I didn’t have cancer! Or at least I didn’t find out about it until later.
The good thing about Valentine’s Day 2012 was it set the standards low for 2013, so I wasn’t too disheartened when the heart-shaped card in my letterbox turned out to be a thank you card (a nice one, at that!) and not a display of love from one of my many (elusive) secret admirers. Nor was I too bothered about spending a second consecutive Valentine’s day in the hospital, because at least this time it was for my penultimate round of radiotherapy. But it’s fair to say I’ll be easy to please come 14th February 2014.
One operation, six rounds of chemo, 33 rounds of radio, roughly 80 injections, 40 self-injections, more than 50 hospital trips, five nights in hospital, three seasons, one birthday and a whole load of cups of tea.
It’s been quite a journey.
But if anyone thinks that means it’s ‘over,’ they are very much mistaken. I managed to avoid hospital for the first 29 years of my life but I’ll be going back every year for the rest of my life without fail. The first check-up takes place in 4-6 weeks, the next shortly after that, and another one in July. For the rest of my life I’ll be having mammograms and letting strange doctors feel my boobs. But I’m fine with that, because I feel safe when I’ve got someone checking up on me. In fact, it’s widely said among the cancer community that the hardest part comes after the treatment ends. Once there are no more daily hospital trips, no more doctors and nurses monitoring your progress, the mind starts to wander and the insecurities and fear set in. It feels pretty overwhelming after such a long time under constant medical care.
The sun came out in Dublin for my final day of radiotherapy, affording me the rare opportunity to walk to the hospital via the beach. After so many weeks of gailforce winds and torrential rain, this felt quite symbolic. It also allowed me to take off my hat and get some much-needed vitamin D to my face and head, which I’m sure will help my hair grow.
The last radiotherapy session was the same as all the rest. The final eight sessions were ‘boosters,’ directed towards the area where the tumour was, instead of the whole breast. I was expecting to have a bright red boob by now, but in fact you can hardly see the effects of the radiation at all. It may get worse over the next few weeks and it’ll be a while before I can shave my armpit and use normal shower gel and moisturiser, but I was expecting it to be a lot worse. I’ve included this photo to the left so you can see what it looks like to be under the machine. Bear in mind this is just for blog purposes – in reality I’d be naked from the waist up!
After the final session, I went up to the Breast Care section of the hospital to say goodbye to the nurses who were there when I was diagnosed. One of them, Maeve, congratulated me on finishing and asked me how I was feeling. I could barely find the words to answer because the question made me want to burst into tears. The poor woman must think I’m an emotional wreck because every time I’ve seen her, I’ve welled up. But the truth is, I can’t go back to that little room where I received my diagnosis on 22nd June 2012 without breaking down a little. That little room with its wonderfully friendly nurses is the place where all this started and it just brings a big lump to my throat. Most of the time I manage to cope by taking each day at a time, but that place brings back the whole unbelievable overwhelmingness of it all.
The effects of the radiotherapy will continue to work for a few more weeks. The tiredness has already hit me and is getting worse, but it’s a strange kind of exhaustion that comes in waves. I sleep for 8-9 hours but often in the afternoons I feel the kind of sleepy you feel when you’ve had a few glasses of wine and a big meal in a really toasty room – a kind of after-lunch sleepiness where it’s hard to keep your eyes open.
For the final session, I decided to wear the heart vest sent to me by my fellow breast cancer survivor and Fighting Fancy founder, Heather. I wore it not because it was the day after Valentine’s Day, but because it was my last session and it kind of symbolised what myself and all the other girls in my global cancer support network have been through. From the one who’s currently in hospital after her fourth mastectomy surgery, to the one who was admitted to hospital with a horrible mid-chemo infection last week, it’s been great to be able to share my experiences with people who really get it.
As all those girls all know, the journey is far from over, but at least I can start to regain a little normality in my life and slowly get over the effects of the treatment. Now if only my hair would grow faster so I could stop looking like a cancer patient…
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!