THE BOOB DIARIES
Discovery and panic.
I am a woman of ample bosom. As a child of nine, I had the budding breasts of a 16 year old in a stuffed wonder bra, and now at 30, I have a set of wazzbags generally only found on the silicone saturated sets of larger budget American or eastern European porn movies.
They have been both friend and foe to me over the years. Weighing in at a whopping stone a piece they have caused more back problems than I care to count, but, luckily for me despite their weight, they do defy gravity slightly and for their size are rather perky. Their buoyancy and sheer mass have been the gateway to many a steamy night and romantic entanglement, and they are currently an ongoing source of pleasure, entertainment, comfort, fascination and, (I suspect) obsession, for my partner.
Whether the bane of my existence, or a handy crutch I used to use whilst trying to pull, my breasts have always been an intricate part of who I am. You see, you learn things when you have a killer cleavage.
You learn that the people worth talking to and spending time on are not the people who choose to constantly talk to your tits rather than your face. You learn that women are bizarrely cheeky and over familiar with you. Grabbing and groping at you under the premise of ‘we’re all girls here’. You learn that people are desperately rude about other people's bodies without even realising it. You learn that men have no idea of personal space and how not to invade someone else’s. You learn that a lot of people base their opinions of others solely on appearances and they make snap judgements and box people into stereotypes. You learn how to utterly rock their world when you bring more to the table than blond hair, big boobs and perfect teeth and you learn how to revel in that.
As a result of all of this, I love my boobs. I love how they look on me, I love how they feel on me, I enjoy the slightly envious looks from other women, I love how my girlfriend looks at them and her reaction to them, and most of all I love how they have made me see the world and given me an understanding, I never would have achieved without them, of how people think and react to others.
That’s why I’m sure you can imagine the unadulterated shock I felt when I found the lump.
I’m a worrier. I automatically jump to the worst case scenario in my head about absolutely everything. So when I found this large, painful lump the first thing that went through my head was ‘How ridiculous am I going to look with only one giant boob?’ Melodramatic, yes, but it’s just how my brain works.
Any bad news over the Christmas period is awful. It seems so much worse, not only because of the holly jolly idiots surrounding you, but because the holidays always take on that surreal quality, where the normal rules of physics seem to stop applying to time, and everything goes so slow and feels so long. A day seems like a week and two weeks seems like months and months. Or at least it felt like months and months until I was able to get to a doctor, despite it only being two weeks from when I found the lump in the first place to when I could get to my GP.
It was a bizarre two weeks. The lump started small and grew rapidly over three days getting increasingly painful all the time. It eventually got so large that you could see it protruding from the base of my breast, but then three days later again, it had gotten smaller. The pain though, did not subside.
I eventually got to the doctor this week. While most peoples mind would be put at ease when the doctor told them that, while it could be a malignant tumour, it wasn’t likely and was probably an abscess, all it did to me was provide me with a whole new set of worries to put on top of the ones already there. If it is an abscess it’s a big one, and there is a risk of it bursting. But nothing is certain until I go for a mammogram.
Of course this whole conversation was held with me lying topless, boobs flopping to the side, arms above my head while she poked and prodded at me roughly, smiling away as though my lumpy breast was an everyday occurrence. It did lose some of its gravitas in my head at that moment so in a small way I am grateful for her nonchalance.
But now I have the problem of having to wait to find out what it is that’s wrong. My brain constantly rushing towards inevitable hysterical fates like me contracting septicaemia from a burst abscess, or having to have a breast removed and the subsequent reconstructive surgery, and the decisions I would face then. Would I get the boob as big as my other one, or would I get the new one a bit smaller and the make the old one smaller too?
With my brain gone into hyper drive, I feel a little lost, and scared and overwhelmed. The Christmas tree is still up and everyone still has that post-holiday afterglow and all I feel is heavy.
The wait to know is worse for me than whatever the actual knowledge will be. So here I languish until further notice, the weight of the world on my shoulders and the fate of my two stone mammary glands hanging in the balance of cold hospital steel and a stranger’s diagnosis.
THE BOOB DIARIES
Written on my phone while in the waiting room.
The sleepless night before this has rendered me over sensitive. Sitting here in A&E waiting to be seen by a doctor I feel so detached from myself. I came here because I still haven’t received a letter from the breast clinic to come for a check-up and the pain of the lump is worsening. So, with a letter of referral from my GP here I am, entering the mire of the waiting room masses. The first and most disconcerting part of the ordeal was the double mirrors on either side of me at the reception desk. It’s like they’re trying to make you look at yourself. Look at how sick you are. How frail. Look at how everyone else is seeing you. Next there was the weird examination by the triage nurse and Jessica, the over friendly, overcompensating student nurse. They didn't even ask me to remove my bra. How can you examine a breast with a bra still on?
So now I’m sitting in the waiting room waiting to be seen by a doctor. With my dad in tow, my eyes adjusting to the buzzing strip lights after being in the toilets that are lit by UV lights. “That's to stop junkies from finding veins so they can’t shoot up”. My dad informs me. Everyone around me is sick and tired and failing as much as I am at health.
20 minutes later:
Having been seen by a male doctor I have been assured that it is a cyst. A large one that I will have to have removed. I'm back in the waiting room waiting on an appointment time to get the procedure done. First off brought through the sickening masses to a curtained-off section. Standing up, boobs out, and poked and prodded at further. The whole thing is so humiliating.
One good thing is they are moving very fast. I've only been here for an hour and forty five minutes not too bad for an A&E visit. A cyst is serious. At least one this size is. Still though at least it’s not cancer. Worst fears allayed. It could make me ill and he was surprised I wasn't ill Already with it. Although between pernicious anaemia and my general bad health I probably wouldn't notice if it was making me sick. Sicker than usual. I'm sick of being sick. It seems to be one thing after another lately. Still though. My adrenaline is racing. I feel giddy and light headed with nerves and a weird sense of relief coupled with fear. Now I have to wait again to see what has to be done. I feel like my life is on hold at the moment taking breaths in between the fluorescent blinking of waiting room lights. I look forward to it being over.
THE BOOB DIARIES
Further Adventures in Hospital Land
There’s something about sitting on the floor of the bathroom with your mother washing your hair because you can’t raise your arms over your head that makes you question your mortality a bit. The previous relief I felt after last week’s hospital visit now thoroughly washed away.
My appointment to see a consultant in the breast clinic in Beaumont was on Tuesday Jan 14th at 10 am. While I was a bit nervous, I wasn’t too bad because of the fact that I was under the impression that the lump was a cyst. A misapprehension I was soon to become all too aware of.
First of all let me give you a quick low down of what happened to me in the hospital that day. A breast examination, an ultrasound, a mammogram, another ultrasound, and three biopsies. Obviously a cyst is not what we are dealing with, or at least it’s not likely.
The doctors and nurses in the breast clinic in Beaumont Hospital are wonderful. They are friendly and informative and do their best to keep you calm and make it as easy on you as they can. Still though, despite their best efforts I felt as though the whole hospital had seen me topless that day.
When I was sent for my first ultrasound scan I was led to a changing room and told to take off my top and bra and put on a hospital gown. This, I’m sure, is all well and good for ladies with a smaller bosom than I, but the last time I walked around in public with no bra on, I think I was about 9! It’s a weirdly intrusive feeling to walk past people in a corridor with your girls set loose. You feel exposed and vulnerable. On display almost. But after about 20 minutes, that was the least of my worries.
I was still under the impression at this stage, that this was a cyst. The very first doctor I saw said they wouldn’t be doing a mammogram as they didn’t need to when it was just a cyst, so my first sinking feeling began when, during the ultrasound the doctor looked solemnly at the nurse and merely nodded. A few painfully silent moments later I was informed that I would have to have a mammogram after all.
So, led back through the corridors, breasts bobbing everywhere under starched, scratchy cotton, I began to feel a rising panic. It all felt so surreal, like I wasn’t really there. I had the mammogram fairly quickly, no real wait. They are an unpleasant experience in and of themselves, but I get the feeling that they are slightly easier on a woman of slightly larger proportions, so I won’t complain too much about that part. Then straight after it I was taken back around for another ultrasound scan.
I was told then, that I was to have three biopsies done. That I would have a numbing injection first and then the procedure would be performed. I got up to leave, thinking they meant, another day, when I was gently pushed back down onto the bed and my boob was quickly lathered in iodine, before I had any opportunity to protest. Of course, this was probably the best way for this to happen, no time to over think it and back out, which is what I probably would have done if I’d been given any time to think.
So, while I was being scrubbed with iodine, the doctor was showing me the instrument that they were going to use to perform the procedure and making me listen to the snapping sound it makes so I didn’t jump when it happened for real. What happened next will surely go down in the annals of my history as one of the more unsettling and unpleasant experiences of my life.
When she said numbing injection I assumed that she meant my whole breast would be numb, she didn’t, only the skin was numb, so I could feel everything that was going on inside me. Due to their size and the position of the lump they had to open me up more than usual for a biopsy, and they had to dig. They had to dig inside my boob to get to the lump. It was just horrendous from start to finish. And they not only had to take one sample, but three. You know it’s bad when the doctor performing the procedure is apologizing to you with every movement she makes, and making exclamations like ‘this is so difficult’ and ‘I just can’t get to it’ whilst pulling my breast to one side with her free hand and rummaging around roughly inside me with the other. It wasn’t easy and it wasn’t quick.
After I had gotten over the shock and got my clothes back on I had to go back to the consultant. I wandered through the hospital, led by my mother, in a total dream state, so when I went into his office I felt completely disconcerted by his happy tones and smiling face. Did he not know what I had just been through?
He then sat me down and told me that it doesn’t look like a cyst from the scans and that he couldn’t speculate as to what it is and my results will be back in the same day next week. We will have a proper chat then and see what is going on. None of this comforted me at all.
So now it is Friday and I feel like I’m in recovery after some sort of accident. The biopsies were more like mini operations. I’m in almost constant pain, I’m not sleeping and I can't even wash my own hair. As I write this I’m waiting on my girlfriend to arrive at my house and I am living for it. All I want is to be held and told it’ll all be ok. It has to be ok. Tuesday is looming large.
So with this I leave you, for now, I am trying not to waste my energy worrying, and am trying instead to invest it into hope.
It's the day before I go back to the hospital for the results of the biopsies and barely a minute goes by that my brain doesn't turn toward cancer.
I'm up the wall, I feel crazy. Like there is a serious disconnect going on in my brain between irrationality and sense and you can guess which part of the brain is winning.
I feel like I haven't slept in weeks. I feel greasy and unwashed. I haven't worn clothes since Tuesday! I've barely left my bedroom. This is seriously getting the better of me.
It's really sunny outside and I'm trying to let it rub off on me a little bit. I'm going to have a bath. I'm going to put on a bra. I'm going to get dressed. I'm going to brush my hair and pluck my eyebrows. I'm going to, I'm going to, I'm going to. Probably.
Problem is that I've been telling myself this since 10am. It's now 12.08 and I'm still sitting in bed.
I've made a cocoon for myself. Everything is within arm’s reach so I’ll never have to leave this spot on the bed.
I'm just so scared that I can't cope with anything else other than my fear. It's all consuming at the moment. Even when Franky was here at the weekend it felt like a dream and seemed to happen too fast. And my dreams were really weird. I feel like I'm in a bubble.
Tomorrow literally can't come soon enough.
THE BOOB DIARIES
The Big C
My girlfriend looked from the tiny wall mounted TV to me and said: “why is Jeremy Kyle always on in hospital waiting rooms?” “It’s to make you feel better about your own life” I said, “it’s like they are saying, look whatever is wrong with you, it’s not that bad, you could be these people.” She laughed at me and held my hand. Five minutes later my name was called, five minutes after that the entire bottom had fallen out of my world completely.
There is nothing that prepares you for the transition that happens in your head that switches you from healthy person to sick person. In an instant I became part of a statistic.
Invasive carcinogenic tumour. That’s all I heard. I know he continued talking after that but that is literally all I heard, after that words became warped and muffled and the walls of his office began to bend and close in on me. Panicked I began thinking: ‘does he know I’m not listening? Can he tell? What is my face like? What do I look like right now? Why can’t I feel my hands?’ I think at that point I smiled, which was met with a rather confused look because he had been in the middle of explaining to me about the after care of a lumpectomy. Myself and my partner were then brought to a green room where the liaison nurse explained everything to us again. A bit more information resonated this time but it felt like a whole universe of information to take in. Then I had to ring my parents and get them to come and pick us up. That car ride from Beaumont Hospital to my parent’s house in Kinsealy felt like it lasted a whole day. All of that began at 11.30 this morning. Its now 8pm and it feels like this day has been my whole life.
I can’t even begin to explain the feelings I am feeling. To wake up one morning ok and to end that same day as a cancer patient is beyond any explanation.
Today I made the decision to push my surgery back a week. Last night I felt like I was literally going insane. Like life had just done a complete about face and I was turned all the way backwards and inside out. I felt completely out of control of everything.
Yesterday I was told that I had breast cancer. That was Wednesday. The proposed schedule was to be today blood tests and general health check in preparation for surgery. Tomorrow would have been an isotope injection, which is a radiation injection to the breast. Then a lumpectomy and the removal of the sentinel lymph node under my arm would have been taking place on Friday. The lump and an area of breast tissue of a 3cm diameter around the lump would be removed and sent off to be analysed. After the results of that came back approx. ten days later the next steps would be discussed. This is still the schedule of events, but instead of them starting the day after tomorrow surgery has been pushed back to next Friday 31st of Jan.
This decision wasn’t made lightly. I’m going to use the time to find out all I can about what’s going on inside my body and to be good to myself. Buy myself something, watch movies I like, eat food that’s bad for me and go places that calm me. Once I go for the operation my life will change completely, at least for the immediate future.
It is pretty likely that I will have to have chemotherapy. They won’t know for definite until the results of the lumpectomy analysis come back but the nurse said that because of my age they would more than likely go ahead with chemo as a preventative measure anyway.
This would mean that for the next year I am going to become the cancer patient I became in less than ten minutes in the cold leather chair of a consultants office.
There are upsides though. It is most likely the most common form of breast cancer which means it is the most widely researched and most curable of the breast cancers. It doesn’t look like it has spread based on the mammograms and if it is the type they think it is, this type of breast cancer has one of the highest survival rates.
But the most surprising upside has been people. People have been so kind and warm and open with me. My gratitude will never be expressed deeply enough to everyone. Friends and family alike. I am lucky enough to be surrounded by beautiful human beings who are full of love and support and my survival of this will be in no small part due to your extensions of kindness, wisdom and grace.
But the one person of all of the people who has risen above the rest is my beautiful girlfriend. My Franky. What she has done is taken all of my weak fragile parts and held them in her heart. She has wrapped me up in the gentlest of kisses and most tender embraces and steeled me against this coming storm. I feel so cloaked in love and light and safety because of her. From her relentless hand holding to the fact that she is moving in with me to my parents’ house in essence to look after me in the aftermath of surgery and for the duration of this thing, her sacrifice and selfless unconditional love for me has shown no bounds.
I love you. I love you. I love you.
I still feel like I’m walking through a wax version of real life. It was only one day ago that I was told and yet I feel like yesterday and today have been the two longest days of my entire life.
All I want to leave you on is that I won’t let it beat me, as one of my friends said, “You’re too stubborn to let a little thing like cancer beat you down”. So all that’s left to do is sound my own personal battle cry. Sound it loud from the roof tops ‘Hey Big C, I’m not afraid of you, you picked the wrong dyke to mess with.’
I woke up in the middle of the night from a dream. I dreamt that my cancer had all been a dream. Just one big nightmare. I dreamt that I was sitting at the table in the kitchen with my Dad, laughing at the silly dream I had. Then I woke up for real. I went to the bathroom and I discovered I had gotten my period and suddenly I couldn't handle it. I felt a bit like I had a sore throat too and I started to think, 'What if I'm dying?, what if all along, every time I've been sick lately has been because of cancer, and it's spread all over me? What if, what if, what if?'
I felt so panicked and scared and like everything was falling in on me, pushing up from beneath and coming down from above.
I went back in to bed and began to sob. Deep guttural sobs that came from my heart and soul and the depths of my belly. The kind of gulping cries that mean you can't catch your breath and you scrunch up your face and whimper and weep and the tears form a river on the pillow.
Franky woke up, and I cried into her chest. She just held me and held me and held me.
I woke up again two hours later with period pain and it was weird because I felt kind of glad to be feeling a normal pain. That was the second time I've cried over this. Only the second, but it was the first time I really allowed myself to let go and really feel it. It's part of the reason I put the surgery back to next week. To give myself time to be weak for a while and to cry buckets before I have to do this thing. I feel better now. I know I'm not about to die. They wouldn't have allowed me to postpone the surgery by a week and a half if I was literally on deaths door, so I feel OK. For now.
I'm going back in to the hospital today. Just to meet with the liaison nurse with Mam. Mam needs to chat with her and I have a few questions that I never thought to ask yesterday, it’ll be a good thing I'm sure.
I'm also going for a few drinks with all of my friends on Saturday. I'll just invite all of my closest ones and whoever wants to come can. If people feel they aren't able that's fine too. It'll be nice to have a night out before all of this madness begins.
It's really about taking one step at a time it seems. Every single person I know, and even some I don't have been so nice and I really do feel really loved. I think if I just take it one day at a time and don't think of the broader picture this will be easier. I cannot, and will not let this win. It's just something that's happening to me. It is not all of me. It is not the thing that beats me. I am bigger than it. I am better than it and it will not win. I am the master of my own destiny and cancer can fuck right off. I haven't got time for it. I'm too busy making plans for the rest of my life.
When this is all over I'm saving up and bringing Franky to Japan. I want to eat miso soup and buy manga comics.
It's weird; it feels like both much longer and much shorter than one week since my diagnosis. I'm scared. So very frightened. The biggest fear at the moment is the surgery. I know that because I have never even so much as taken a sleeping pill that the loss of control involved in going under is what freaks me out the most. Still though, not an awful lot I can do about it. I go in for surgery on Friday and that's the end of it really.
I feel so weird. I went out on Saturday night and got absolutely fucking wasted and I really regret it now. Not the going out part that was great, just the amount of shit I drank. I guess that was inevitable though. I ended up getting a cold; I think that's why I regret it so much now. Not looking after myself properly in light of what is going on in my body seems really fucking stupid. Still though, not a lot to be done about it now. A friend said she would come over to me tomorrow and I can feel myself backing away from that idea mentally. But only because tomorrow is Wednesday which means three days away from surgery and I'm just nervous. I can't allow myself to lock myself away from my friends. After all, I'm going to really need them over the coming months. So obviously despite the fact that what I feel like doing is hiding under my bed covers for a whole day tomorrow, I will embrace a visit from my friends and talk and have a laugh.
It still all just feels so surreal. I don't feel sick. Aren't you supposed to be ill when you have cancer? I don't feel ill. Or maybe I do. I don't know any more. I have so many questions. I feel like the amount of questions I have can never be answered. Most of the questions I have can't be answered until after the surgery anyway.
I read a lot about it tonight and I honestly don't know if it made me feel better or worse. I think I have an excess of information now. How can I expect myself to be ok with it after only a week though?
I'm just so scared of everything, of how much my life is going to change, of stupid things like not waking up from the surgery. I'm scared of losing Franky. I'm scared of dying. I'm scared of more surgery. I'm scared of never achieving what I want to achieve in life. I'm scared of never getting a degree, I'm scared of going into early menopause, of infertility. I'm scared of a year of chemotherapy and losing my hair. Well, not so much the hair on my head weirdly, but my eyelashes! I'm scared of losing my eyelashes, I like my eyelashes.
I'm exhausted and I can't sleep and I'm having messed up dreams when I do finally sleep. For now though I guess I'll just read until I do fall asleep. I have to stop over thinking this.
Tomorrow is the day I get the isotope injection for the sentinel lymph node mapping. It is four injections of radiation around the lump or nipple. This essentially carves out a path from the lump to the sentinel lymph node. They do this because on Friday, when I go in for the surgery they will inject a blue dye into my breast , which follows the path made by the radiation and turns either one or two of the first lymph nodes blue. When they open me up they need it to be blue to see it as they are tiny and however many have turned blue, that’s what they remove.
I'm trying so hard not to freak out about surgery on Friday. I can't imagine it, so I can't imagine waking up from it. I'm so scared to go under, and I'm scared of the pain and I'm scared I'm going to die on the operating table. I've never even been sedated for anything. I don't know what it feels like to have the control over your bodies’ wakefulness taken away from you. It's terrifying me but at the end of the day, there's nothing I can do about it. There is no option.
If I didn't have surgery I would definitely die, and it would be slow and painful and awful, so I have no choice as I see it anyway. Doesn't stop me from being scared shitless though.
Tomorrow is scary too because once it's done that's it, there is no turning back. And the idea of having a radioactive substance pumped into my body isn't exactly appealing either.
I guess I just still can't believe it's all really happening. I mean, I have breast cancer. I don't think I will ever get used to saying that and more to the point, I don't think I want to get used to saying it. It is literally going to take all I have to get through this year. I keep thinking that I'm tired, when really, I don't even know what tired is yet.
My brain feels like it's turning inside out over and over again.
I'm just so scared, and frightened and freaked out.
THE BOOB DIARIES
I have always been afraid that my breasts were what defined me in most people’s eyes. Now my fear has been realised. I’m not just the girl with the unfeasibly large breasts anymore; I’m the girl with breast cancer. It’s a thing that defines a whole faction of people whilst keeping them faceless, nameless. Breast cancer, it’s all pink ribbons and inspirational slogans.
People keep looking at me with pity laden faces and doleful expressions. ‘She’s so young’ they think. My hospital visit to get my isotope injection the day before surgery saw a whole host of nurses explaining procedures and talking directly to my mother. ‘They think it’s her’ I thought. Each time I corrected them and told them it was me who was getting the procedure I was met with that look. That ‘I’m so sorry, you poor thing, how old are you anyway?’ look. It’s understandable I suppose, it’s how I would have looked at me before all of this. It doesn’t make it any easier to accept though.
It’s now four days after my surgery and the wait has become all that there is. It seems insurmountable.
My surgery was a success as far as it goes. I had a bilateral partial mastectomy and a sentinel lymph node removal. So, there are two separate incision sites. I’m healing nicely albeit in a hell of a lot of pain, but thankfully the good people of Beaumont saw fit to prescribe some lovely strong painkillers so I’m managing.
The surgery wasn’t as bad as I thought. Mind you, anything would have been better than I thought. I was convinced I wasn’t going to wake up from it.
I was in at 7.30 in the morning and was down in the anaesthetist’s room by 8.40. Having been walked down through the back corridors of Beaumont’s dimly lit halls I was brought to a room and told to sit. A small TV was on overhead and Suzanne Vega was on it, singing Tom’s Diner, her dulcet tones eerily haunting the empty room, my fear rising as she swelled to the chorus. I felt sheer panic. I’ve never even so much as taken a sleeping tablet so the prospect of going under was filling me with a kind of raw fear I’ve never felt before. But the anaesthetic team were lovely. They calmed me down really well.
It’s the weirdest feeling to go under. You literally have no control. After they hooked up my IV the doctor told me I’d be asleep in 20 seconds. The next thing I knew I was out in the recovery room, being woken by a young student nurse. I woke up talking. Babbling about taking a maths test that I didn’t know any of the answers to. It was completely disorientating. But that was it. It was done.
I was brought back up the day ward to be monitored and my mother and girlfriend were called. They were allowed sit with me until I was discharged. I was home and in my bed by 6.30 that evening.
When the surgeon came around I was still slightly doped up, but he told me that the operation had been a success. All went well and based on the x-ray that they took of the lymph node, lump and surrounding breast tissue, to the naked eye, it doesn’t look like the cancer has spread. However they won’t know until the results come back of the analysis. 10 days after the surgery is when the results come in. that’s 7 days from today. 7 days to find out if it’s gone, if it’s likely to come back, and what kind of treatment I will need. I will definitely need treatment but what it will be all depends on these results. Will I need chemotherapy, radium, hormone therapy, more surgery? What combination of those things will I need? Will I need all of those things?
It’s the longest heaviest wait of my life, and all I can do is sit and rest up and recover and try to brace myself for what is still to come.
It’s the day before the results and I haven’t slept properly in the last two days. Well, really I haven’t slept properly since my operation. Still in a lot of pain, but I have been even worse the last two nights.
It’s odd, because I’ve been in so much pain after the operation I was able to push all fears aside for a while and just focus on that, but now that the pain has lessened slightly and it’s the day before the results, I literally can’t think of anything else.
What do I do?
Where do you go with such a huge weight and I’m fucking terrified. This is definitely worse than whatever comes next, this horrible no mans’ land of waiting for results.
I just want to know. I need to know. Worst case scenario even. Its ok, I’d deal with it but this waiting is killing me.
I feel so on edge and jittery. Still in less than 24 hours I’ll know one way or another. I’ll know the direction my life is going to take or the next year or more. A decision that has been taken entirely out of my hands and placed in the laps of the gods. I hope they’re smiling at me. I’m already so tired of all of this.
To say something like ‘I’m glad I have to have chemo’ feels like a very strange thing to say, but I am, I’m glad.
I’m not glad I will be sick, and I’m going to lose my hair, but I am glad that I don’t need any more surgery and I’m glad that having chemo now greatly reduces the risks of the cancer coming back so yes, I’m glad that I have to have chemotherapy.
The waiting room of the breast clinic was packed. It felt like we were waiting an age to be seen. It was only actually about a half hour though. My nurse called me into a room first where she removed my surgery dressings and stitches then she brought me back out to the waiting area where my Mam and Franky were waiting. I sat back down, the nurse told us we had to wait a while longer and we began chatting amongst ourselves. It was then that the first of the day’s blows came. The nurse came back out to me and said: “I didn’t want to burden you with this before but with chemo, fertility becomes an issue, it’s something you need to think about now, have you ever considered having children? You might want to freeze your eggs. You need to think about it now because if it’s something you want to do you have to tell the doctor asap because they would have to postpone chemo to do it.” Well, I was floored. I didn’t know what to say, first of all I hadn’t officially been told yet that I was definitely going to be having chemo, so I was getting my head around that first, I mean she wouldn’t have come out to tell me all of that if it wasn’t definite that chemo was on the cards, secondly there was everything else she had just said.
Now, me being me, I had already researched all possible outcomes of chemo so I had known that should I have to have it infertility is a possible side effect. I knew this. I had already had the discussion with Franky. I have never wanted children of my own. I’ve even written an article about it, but being told by a medical professional that my choice of children is about to be taken away from me made my womb do a sudden lurch and all of my previously lacking, broody mothering instincts began to crash and bash at my head all at once. The minute you are told you can’t do something, it suddenly becomes the only thing in the world you want to do.
But aside from the deafening toll of my biological clock pounding in my ears, once the shock of hearing it said out loud in such a matter of fact way was gone, I realised that the only reason I was panicking about it was because my choice was being taken away, not because I actually had a choice to make. I still do not want children. Once I realised that I calmed down. Decision made, I won’t be freezing my eggs.
So then there was just the wait to be called to go in to see my surgeon to get the results. When the nurse called us in “Aoife and entourage”, I began to hear my own blood rushing around my head and feel my heart beating almost in my throat. After a quick check of how I had healed, we were all seated and he began to tell us the results.
Without using all of the medical jargon he threw at me it boiled down to this:
1. There were some more cancer cells detected in my breast other than the lump removed.
2. There were isolated cancer cells found in the lymph node that was removed.
3. I won’t need more surgery despite this as he didn’t think they were of individual growth, merely left overs, so to speak, of the original tumour.
4. My cancer is what’s known as triple negative, which means it is not responsive to Oestrogen or Progesterone.
5. The cancer was a grade 3 tumour.
6. Because it is triple negative it means that hormone therapy won’t help me at all, which means I have no option. I have to have chemotherapy followed by radio therapy.
The type of cancer I have is called IDC which means Invasive Ductal Carcinoma. It is the most aggressive form of breast cancer and the fastest growing one too.
After the surgeon told us all of this we were brought down to the same green room we had been brought to the day I found out that I had cancer.
My liaison nurse went over a few more things with me, gave me some booklets and set up my appointment with my oncologist. I am to meet him next Wednesday 19th Feb. and he will tell me the regime and give me a start date for my chemo. According to the nurse it will probably be the one of the harshest forms of chemo as I am so young and because of the type of cancer it is. My hair will begin to fall out after the first cycle. They suggested that I put college on hold for the rest of the year. Which I’ve done. And she told me that I will be sick. The chemotherapy will last for about 6 months after which time I will begin the radio therapy which will last about two months.
So that brings me to now. The last few days since I got the results I’ve been basically trying to come to terms with the prospect of being pretty much constantly sick for the next 8 months. There are so many things that you don’t even think of that are about to happen, like, being told by a friend of my sisters to make sure to get a good nasal spray as all of the hairs in my nose will fall out.
It’s all just so much. And I’m really scared. I don’t want to be sick. I don’t want to lose my hair, I don’t want to look sick. There is so much going on in my head. My sister has had to tell my 8 year old niece about all of this stuff because I am going to look scary to her soon enough. So she needed to be prepared for that. And I’m trying, god I am trying so fucking hard to just take each day one at a time and not think about the ‘what ifs’ and the ‘when I’s’ but it’s so hard not to leap off in my brain about two months into the future. I over think everything anyway, so this is no different. It just seems like it’s going to be such a struggle and I suppose it will be. But it’s just something that has to be done.
I am glad though, that it’s not starting immediately, and that I do have this time to get my head around it.
I think I would have cracked up if I hadn’t had the time to prepare.
At least now I have time to ready myself. Like on Tuesday I’m getting my hair cut short. I figured it’d be less of a shock to everyone, including myself if we all got used to looking at the shape of my head before it’s completely bald. It’ll be more of a gradual process that way I suppose.
I’ve also had time to do things like buy blankets that I can bring to the hospital with me when I start my chemo and buy a load of books online and that sort of thing. I find this sort of preparation makes me feel a bit better. Like at least I can be in control of some aspects. If I can take of all this stuff in hand I feel like I’m in charge of the situation a bit more.
So now it’s just more waiting. I feel like I’m wishing my life away at the moment. Still though, at least soon I’ll have a plan of action, no matter how hard it is and I am prepared for any and all possible outcomes and side effects.
For a neurotic like me, there’s an awful lot to be said for a decent plan.
It’s two days before I meet with my oncologist to find out my chemo regime and when it begins. I am absolutely dying with a cold and for the first time since all of this began I am feeling really truly sorry for myself. I just keep thinking about how for the next 6 months at least I am going to be pretty much constantly sick. I keep thinking about things like my nieces first holy communion in May. Will I be totally bald by then? Should I go if I am? I know she would want me there but, we all know that kids can be so cruel to one another, or even just that little bit to inquisitive and I would hate for anything to upset her on that day, or any day after it really. So I just don’t know what to do. But that’s months away and I know I’m losing the run of myself, it’s just feeling so ill has me feeling down. I’m finding that difficult to shake today.
I suppose that, given my usually stupendously sunny disposition I’m allowed at least one or two down days. I’m taking this as my first.
I just can’t wait for Wednesday. I feel like for the past month all I’ve done is wait for one thing or another. At least after Wednesday there will be no more waiting really. I’ll know what’s happening and when it’s happening. I just feel a little like my life is on hold at the moment.
Again, I know I’m feeling that way because I feel so sick but staying so consistently…buoyant…well it gets tiring and when in the grips of a cold it is harder to maintain.
So I think today I’ll allow myself to wallow here in my melancholy. I’ll stay in bed, drink Lemsips, watch cheesy movies, and cuddle my cat, even when she doesn’t want me to, and just generally feel a bit sorry for myself.
After all, tomorrow is a new day, I’ve plenty of time to stay positive then.
People keep telling me I’m so strong. But I think that it might only be because I’ve completely cut myself out of normal functioning society. It’s easy to be strong when you’re in the middle of a life less lived. I feel like everything is on hold.
On Wednesday 19th Feb I had my meeting with my oncologist. He told me that my chemotherapy would start on the 6th of March I would be getting four treatments of AC chemotherapy, once every 2 weeks, so that would be eight weeks, followed by twelve treatments of T chemotherapy, once a week for twelve weeks, bringing my total chemo treatment time up to five months.
After that it would be 6-8 weeks of radiotherapy, meaning that in total it is 7 months of treatment, all starting on 6th of March. Or at least that was the plan.
That same day I noticed an odd redness and swelling in my breast around the wound site from my operation. So while in with the doctor I asked him to take a look. He didn’t seem overly worried, and prescribed me antibiotics and went ahead and told me all about my chemo regime. The next day I was to go into hospital for the day to have a CT scan and a bone density scan, all parts of the procedure before you can start chemo. I was to fast the night before and had my self all geared up for the next day.
My sister was to drive myself and Franky to the hospital and the three of us would spend a lovely afternoon drinking greasy hospital coffee and chatting. That was the plan.
But by 10 o’clock Wednesday night I had an unmerciful pain in my breast and an aggressive swelling began in earnest. I decided to take off the dressing to have a look, I lifted up my top to find the dressing swamped in puss and ooze and when I took it off it just began to pour out of the wound. I rang the hospital, I contemplated going in to a&e but the nurse on the phone told me, as I would be in the hospital any way the next day I would be as well waiting to see the breast care specialists then. So I hung up, put new dressings on and went to sleep. The next morning I woke up soaked! My t-shirt, the bed, everything. It was nasty and horrible and painful. I covered it with more dressings and went to the hospital with Franky and my sister.
The CT scan was at 9 in the morning, so I went and got that and the isotope injection for the bone scan out of the way as quick as I could. Then I went to the breast clinic to have it checked out.
After waiting a bit a nurse came out to see me, thinking she was just going to check a wound and dress it properly. Oh how wrong she was.
She took one look at it and immediately called the surgeon, who’s office we were in, over with the statement: “You need to see this, it’s an infected seroma and what feels like an abscess”. ‘Fabulous’, was all I could think. They began to squeeze the puss out of the wound, which was ridiculously sore. The nurse filled a little sample jar with puss and went off to give it to whoever has the unfortunate job of checking and analysing puss samples.
While she was gone, the surgeon continued to squeeze, but then he turns and says to me: “How do you feel about me opening you up a good bit more with a scalpel? It’s a tight opening and if it was bigger we would be able to get more out without having to squeeze quite as much”. Wide eyed with shock I replied with: “Well honestly I don’t feel very enthusiastic about it but you have to do what you have to do.” And then he did it. Straight away, just like that, boom, opened me up with a scalpel.
Whilst he was opening the packet of the scalpel he goes: “I won’t use any anaesthetic, it’s too infected to have any effect anyway.” So he went ahead, and opened a hole in my breast, large enough to fit his middle finger through apparently, without using any anaesthetic, not even a topical numbing cream. To put it mildly, this was not a pleasant experience, and the pain was simply awful. So now I had a nice big gaping hole in my boob, and when the nurse finally came back they continued to squeeze until nothing else came out. They stuffed the wound with a wick and dressed it. I then, after all that, still had to wait around for another 2 hours to go and get the bone density scan. It became one of the longest days of my life.
When I came home I had to make an appointment with my local HSE clinic to see a nurse daily to get the abscess drained, the wound packed and it all dressed. Even at the weekends a nurse has to come out to my house.
It’s over a week later, closer to two weeks later and I’m still attending the clinic daily, my chemotherapy has been pushed back to when ever this clears up. I have an appointment with my doctor in the hospital tomorrow to give me the results of my scans, check out the wound and hopefully give me some sort of date for my treatment to begin.
I’m exhausted all the time. I’m sick of being unwell and sick of not having even one day to myself where I don’t have to see a medical practitioner of some sort. I feel like I’m in a fishbowl, constantly going between my house, the hospital and the clinic.
It just feels as though I’m not getting a break. I know I’ll feel better once I’m given a date for the chemo to start. Even if it can’t start for another 6 weeks at least I’ll know and can prepare myself for it, build myself up for it. At the moment I just feel so lost in it. Like that’s all there is to my life right now.
The sooner I start treatment the sooner it’s over and I can get back to living my own life again, not the life of a cancer patient. I feel like I’ve stepped into someone else’s skin accidentally and I’m trapped here. Everything, all of the interesting, creative, fun parts of me have been replaced by this strangers life and a foreign sickness. It’s really beginning to weigh me down. It’s not going to take me down completely, nothing ever does, that’s just not who I am. Too strong willed to be taken down by anyone else other than myself. I just feel like I can’t see past it. My vision will adjust to the new light eventually, I know that. I’m just so sick and tired of feeling so sick and tired all the time. Hopefully tomorrow will bring some good news and a date to focus on. Here’s hoping anyway.
I’m not sure if many of you would be familiar with the Alanis Morissette song ‘So Unsexy’. I realise most people aren’t aware of her existence post ‘Jagged Little Pill’, but it’s off her 6th album, ‘Under Rug Swept’. The chorus goes like this: ‘I can feel so unsexy for someone so beautiful, so unloved for someone so fine, I can feel so boring for someone so interesting, so ignorant for someone of sound mind.’ Now, it’s not that I think that I am particularly beautiful, fine or interesting, it’s just that I don’t actively think that I’m not.
You read a lot in the media about how having great sex is all about feeling sexy, and if you’re anything like me you think: “Pfft…what tosh! I don’t feel sexy and I have amazing sex!” that’s what I thought. You see, I didn’t realise that I ever felt sexy until the first time I really felt unsexy, and that was after my partial mastectomy. It was the first time I was feeling even remotely amorous, and my girlfriend took my top off while kissing me. Now I’m as cool as cucumber and I don’t think she noticed, but inside I was reeling. I felt horrible and while my loins definitely still burned for her, I didn’t want her to even look at my breasts never mind touch or caress them.
In the end, we didn’t have sex that night, I said I was too sore, but perhaps she had noticed my uncomfortable squirming, because she did something so tender right when I pulled back from her. I know she didn’t even realise she had done it and I never told her how I felt about it but just when I lay back from her, my top was off, bandage still on the wound, I think I slightly flinched as she put her arm across me, and then she did it, she traced her fingertips across the bandage and looked at me for a second, then she gently kissed the outside of the dressing. That’s it, but it’s something that keeps replaying itself over and over in my head. I felt tears well up in me and I coughed them off and went out to the bathroom to compose myself. But that moment of delicate tenderness and intimacy helped me more than she knows. Or knew, after she reads this. It just comforted me to know that she wasn’t horrified by the missing piece, or the unsightly wound. She loves me and she will always find me attractive regardless of what’s going on with the physical vessel I inhabit. She finds my soul sexy and that’s a definite comfort when going through something like this, because all of a sudden I am so aware of how unsexy I feel. Mostly, because of how my breast now looks, but also because of things like, not being able to shave properly because I’m in pain. For a while I couldn’t wash properly and for two weeks after the operation I was almost completely dependent on Franky. Even needing help going to the toilet. That sort of co-dependence isn’t sexy.
There is the looming thing also. The hair loss. So not only will I have a funny boob but I will be completely hairless too.
I’ve tried so hard to imagine what it’s going to be like in the throes of passion, throwing back a shiny bald head. I can’t even imagine it let alone find the sexy in it. It’s terrifying to think that for the next year almost I’m going to be or at least feel so physically unattractive.
On top of all of this there is the infection I have in my breast at the moment. I mean, its oozing for Christ sake!
It’s like one of those horrific things you see on Embarrassing Bodies. The woman is massively overweight, she has greasy hair and a skin tone best described as ‘grey’. She removes her top and chewing gum coloured bra to reveal heaping sagging breasts, with the nipples pointing all the way down to the floor. There are bright red spots and huge black heads all over her chest. She lifts up one of her great, flaccid mammary glands to show to the camera a gaping, oozing pustule, seeping yellow beside an open wound. She exclaims, in the most perfect cockney accent you have ever heard: “ I don’t know Dr Christian, it were fine when I come out of ‘ospital, innit? But now lookit!”.
That is what keeps going on in my head every time I think about the infection I have, and that is not sexy. Not to anyone. Not ever. It’s just grotesque.
Of course Franky insists she doesn’t care and is unphased by it all. I believe her. I really do. And I have total and complete faith in us. I just don’t have a lot of faith in me right now. I don’t know if I will be able to maintain even the pretence of sexiness in order to keep up a sexual relationship with my partner. I know sex is not everything. But I don’t care what anyone says, its important. Intimacy is important, and I really don’t want to lose that.
I know my body is about to change. The chemo will send me into early menopause which could also affect my libido. I’m about to undergo some stark physical changes and emotional ones. I am worried that I won’t ever regain the ability to feel desirable again.
My girlfriend is wonderful and we are two souls who are aflame for one another. There is no mistake in that. It’s just scary to feel so alien to yourself. I need to start convincing myself that how I look has no influence over how she feels about me. Ours is a deeper pull not solely borne of base physical attractions.
She’s my soul mate and kindred spirit, and I know she feels the same way . it’s just going to be hard to adjust to sex as a menopausal, balding neurotic with lopsided breasts.
I’m just back from another hospital appointment. Mr Allen (my surgeon), had a look at the wound and said that it was healing, but I’ve still to get it dressed daily and I’ve to come back to him in 2 weeks’ time and hopefully by then it will be healed up enough to close me up and let the wound heal up. Then they will be able to fix a date for my chemotherapy to start. At this stage I’d say though, that I’m looking at, at least another 4 weeks before my chemo will start. It’s all just adding time onto something that I want over and done with as quickly as possible.
But then, not only was I given this bad news, when the doctor had left the room and I was all put back together with my clothes back on and the wound packed and dressed, my nurse told me the results of the scans I had last week.
While everything was mostly ok, (I do NOT have cancer of everything which was an irrational fear I had been cradling), I have, what looks like cysts on my ovaries. And lots of them. So I have to see a gynaecologist to have more scans to check that they are definitely cysts and not anything more serious, and figure out what to do with them if anything.
Now, the nurse said that it isn’t really anything to worry about. They look to be the kind that show up whilst you have your period and go away by themselves when your period is finished. This would make a lot of sense as I’ve always had extremely painful periods and the nurse said that given that I’ve probably had them for a while. If they are this type of cyst, even if I wasn’t about to have chemotherapy they wouldn’t perform any form of surgery to remove them, all they would do is prescribe a particular pill which would control them, but seen as I will go into menopause with the chemo that would be unnecessary and this problem should, hopefully sort itself out in the long run.
That’s all well and good, but after what happened with the lump in my breast initially, I have zero faith in 'probably' and 'most likely' and 'it looks like'. I won’t rest easy until I go for a scan and find out exactly what it is. This much I know.
So now it’s back to more waiting and another thing wrong and more complications. I just feel so completely exhausted right now. I’m taking hit after hit and there are only so many times I can smile in the face of adversity. I just feel so helpless and out of control in it. I just want it all to stop. Even if just for one day. I would just love a day where I could sleep in until 12 in the afternoon, and not have to worry about getting dressed or going to the clinic or the hospital. Just one day, but even just that feels like I’m asking for a miracle at the moment.
“Human beings make life so interesting. Do you know , that in a universe full of wonders, they have managed to invent boredom.” – Terry Pratchett.
Today, the sun is out. I mean, really out. I’m looking out my window and from what I can see, it’s mostly cloudless, just the odd faint cirrus wisp dappling the vast, clear pale blue. The trees that I can see are so still, and all I can hear out there is just the distant whirr and hum of faraway traffic. It’s so serene. Even the cat is asleep on the window sill.
I just got brought a gift. My mother’s friend Mag, won a competition that she entered for me on TV3. The prize was the book, ‘B is for Breast Cancer’ by Christine Hamill. It was such a lovely gesture and receiving this gift coupled with the weather has me in a truly good mood today. I feel like old me, normal me, the me from before. I’ve begun, as old me would, to think about things. Specifically about boredom, and finding ways to fill the huge amount of empty space and time I have ahead of me.
I’ve always been the type of person that has her finger in many pies. Like the old saying; ‘Jack of all trades, master of none’. It’s something that always really annoyed my about myself until now. Now I’m grateful for it. Finding it easy to pick hobbies has made me feel better the last few days. For example, I always could draw a little, so I’ve decided to take up sketching and watercolour painting. Then there are my musical instruments. I sing, I write, I’ve always been a voracious reader. All of this has brought me comfort because I know that I don’t have to have nothing to do. I mean, you know, it can get you down a bit, I should be in college right now. I should be having my days filled with learning and social interaction, but instead I’m languishing here, counting seconds and waiting for stuff to happen. It could drive a person mad. And I thought you know, it’s like this now, what’s it going to be like when the chemo starts? I know that for the first 8 weeks of treatment it’s one session every two weeks and you have to go in the day before for blood tests and the day after for some injection got to do with boosting your white blood cell production. So that’s three days but what about the 11 days in between sessions? It’d be unbearable if I had nothing to do. You’re advised to avoid overly crowded places, nights out, and anywhere you’re likely to pick up an infection, so that’s my normal social life out the window I know there are going to be days where, even if it was a good idea, I won’t be able to leave the house because I’ll be feeling so sick, but I can’t just sit in my room, staring at the four walls as they slowly close in on me.
I was thinking all of this when it dawned on me that of the majority of people I know, I do the most stuff. I’m interested in everything. I mean literally, you’d be hard pushed to find a topic that I’m not interested in. I’ve always had loads of hobbies, I’ve just never stuck to any of them with enough dedication to become pro or exert at them. But I have a huge amounts of interests, from comic books to philosophy. Art, music, literature, science, and everything in between.
I’ve books of every genre, I have my guitars, a ukulele, keyboards. I sing, I write poetry and stories and flash fictions, I can draw and make clothes. I realised that whilst I’m going through this shitty shitty thing I can be making something beautiful. Art, music, words. I will have the opportunity to hone my skills in any area I want to, maybe finally become that expert in something. Basically, I realised, I have everything at my disposal to never feel bored again. I have a million positive, productive, creative and artistic ways to spend any time I might have. I don’t need to let the walls close in.
After all, you can only be bored if you’re boring, and I don’t think anyone could ever accuse me being that.
It seems to come right when you think you’ve got a grip on what’s happening. I thought I would go in to the hospital on Tuesday, see Mr Allen, he would look at the wound and tell me whether its healed up enough to stop getting it packed and dressed daily. If it was they would make another appointment with my oncologist and then he would make a new appointment for the chemo to start. In other words, I thought I would have at least another three weeks before it would start.
Well, just now I had a phone call from one of the nurses from oncology to tell me that she is booking me in next Friday 21st for my first chemo treatment. If Mr Allen says that the wound isn’t healed enough on Tuesday I have to go in anyway because it might be healed enough by Friday and they need to start the chemo ASAP at this stage. Those were her words. ASAP. Also they will sort out an appointment with a gynaecologist for me as well to get the cysts on my ovaries checked out.
So there it is. A date. Finally a date. I don’t know how to feel about it really. I think I had been able to push it almost to the back ground. Like going to the clinic every day was just for a wound. Nothing to do with cancer. The elusive start date of the chemo was almost enabling me to convince myself that it wasn’t really going to happen. Like all the cancer stuff belonged in some far off distant place. I’d become almost complacent about it. But now, here I am, right back in the thick of it.
It’s going to hit everyone all over again once the chemo starts I think. I mean, if I was pushing it to the background I’m sure everyone else was to a certain extent.
But I’m glad to finally have a start date. The waiting was killing me. I’ve developed an almost insatiable lust for other people’s breast cancer stories. I feel like I’m devouring them. Swallowing survivor tales whole. But it seems like one of the common threads through most of these stories seems to be waiting. I really hate the wait. So yea. It’s good to have a start date. The sooner it begins the sooner it’s over.
I’m just scared. I don’t think it will properly hit home for me until I have those drips in my arm and I’m sitting in the hospital being pumped full of chemicals. It feels like that’s going to happen to someone else. Not me. I’m just scared of being sick and just not knowing what’s going to happen, or how it’s going to affect me. And I’m just a bit, well, I don’t know how to describe it really. Forlorn maybe? I’m sad I guess. I wish I’d more time of not having anything to do. All of the constant visits to the clinic has made me feel like my life is not my own. I would have liked more time. To just be a bit normal and do normal things.
I’ll have plenty of time for that after treatment. I know, but still. Just wish it was all over with already. I wish I didn’t have to do this. It’s already been so hard and the real fight hasn’t even begun. I just wish it was all of my tomorrows already and that this was far behind me.
One thing is for sure, I’m experiencing a lot of firsts at the moment. Last Thursday presented me with the opportunity to become the owner of my first ever wig. I’ve never even worn a wig as part of a fancy dress costume so the whole experience was new to me. I had envisioned going to an outdated wig shop and taking part in hilarious dress up sequences with a funky dance tune permeating the events, but while it wasn’t exactly the retro 80’s montage I had imagined it was still a fun experience and ultimately very rewarding.
I went to Roche’s. To their hub in The ARC centre on Eccles Street in Dublin. The girl I dealt with there was lovely. She was pleasant, and patient and really welcoming. The whole experience was made to feel very natural and non-judgemental and she gave me decent and constructive advice and was honest with every wig I tried on.
I have a medical card so am entitled to one free wig, but she also threw in all the care products I would need. Shampoo, conditioner, etc., and also a small piece of hair that looks like a fringe that just sits under a head scarf or hat and makes it look as though you have hair under there. The difference even the smallest glimpse of hair can make is really quite surprising and I can see myself using the fringe way more than the wig. In all honesty I wasn’t even going to bother with a wig until my 8 year old niece said to me “remember don’t forget to get a wig for my communion”. Well, what can you do, out of the mouths of babes.
So anyway, now I have a wig. It’s strange because I do feel slightly comforted to have it there. I have to say it is a great wig. It doesn’t look like one, if you know what I mean. The quality of it is impeccable, it doesn’t look like synthetic hair. I went for a short style, for me they looked the most realistic and closest to a style I would actually have myself. It looks great on and as I said, it is a comfort knowing that I don’t ever have to leave the house bald if I really don’t want to. So all in all a great experience and I just can’t say enough good things about Roche’s and the wonderful ladies in The ARC centre either.
So Thursday was wig day. The first of the firsts last week. The next first was the chemotherapy which started the next day.
On Tuesday my Doctor had told me that the wound had healed up enough that I wouldn’t need it to be packed anymore and that I should be ok to start the chemotherapy on Friday. So that was that. I knew it was going to start. I had spent so much of my time just waiting for it that when I actually got the go ahead it felt utterly surreal. A feeling that hasn’t left me four days later.
My sister and my girlfriend came with me, and thank god because I was in Beaumont from 11 in the morning until 6 in the evening. Seven full hours in the hospital. It was an ordeal. They have assured me that the first cycle takes the longest as they have to check your weight and height. They do this to make up the correct dosage of chemotherapy to give you. So they send off their data to a pharmacist and he makes up the dosage that day. In future that will already be done and the chemo drugs will be pre-ordered, so that’s one part that should only happen on your first visit. However, they do still need to take blood tests and wait for the results to come back, so while my next session probably won’t take up a full 7 hours in the hospital it probably won’t be shorter than 4 hours either. Either way, I was certainly glad of the company. The oncology day ward in Beaumont is nice. It’s a bit more homely than other waiting rooms I’ve been in, but it is still a waiting room. The staff are lovely and I was left yet again, full of gratitude for the wonderful nurses who break their backs to make everything as pleasant as possible for patients. But all the pleasantries aside, there were still some things I didn’t realise were going to happen. I had no expectations of anything so everything was a surprise for me really I suppose, but that day and the next few days after have been and were hard going, so here’s a few things I didn’t know before that I’m glad I know now, and if you’re about to go for your own chemo or go with someone to get theirs, it might helpful for you to know too. So here’s a list:
1. The oncology ward is warm. I mean really warm. People going through chemo are at varying levels of sickness, therefore the ward is kept at a toasty temperature. All I can say is wear layers because you will need to remove most of them within the hour.
2. Everything takes time, so be patient. First you will have to wait to be seen, this took an hour and a half in my case. Then I got taken to have bloods and my weight and height checked. Then another wait to see a doctor for him to explain everything that was going to happen to me that day. Then another wait for blood results and chemo meds to come in. it is a really long and drawn out day and don’t expect anything to be done quickly.
3. No one else getting chemotherapy is under 40. Seriously. Ok, well I know that’s not strictly true, but everyone in there while I was in there was well over the 40 mark, and generally a good bit older. It was, to say the least, disconcerting. To be looked at with such sympathy by people suffering worse fates than you takes an adjustment. Just prepare yourself, if you’re young going in there, you may be the only one young person in there. It can make you feel a bit depressed. I know that’s how I felt when I looked around me.
4. They will give you free tea and sandwiches. Win. We even got biscuits.
5. There are other things that you get via drip as well as the chemotherapy. This is something I hadn’t known beforehand. First they put a drip of saline solution into the line in your arm, then you are given an infusion of steroids and anti-nausea drugs that takes 15 minutes. Then they flush the veins with more saline solution.
6. Make sure you bring the drugs that were prescribed to you by your oncologist. I did on a whim and was glad I had because there are certain ones that have to be taken at specific times before or after the chemotherapy is started.
7. I am receiving AC chemo at the moment. This is a combination of two different types of drugs given simultaneously. This is given to you by the nurse. She will inject it into the line in your arm. There are four bottles of it, two red and two clear. Each one takes about ten minutes to inject so the whole process takes about 45 minutes. That plus the previous 15 of steroids and sickness medication takes the whole chemo process up to about an hour and a half in the chair in total.
8. After I got my chemo I went straight to the toilet. Do not panic. If you are receiving AC chemo it turns your pee red. You are not bleeding from anywhere. This seems to happen almost instantly so don’t worry. Everything is fine.
9. Prepare to feel warped beyond all control. The steroids have had me feeling totally crazy. The next day after the chemo was bizarre. Have you ever had a night of heavy drinking, and you wake up to early and you’re still really drunk, but really hung over at the same time? Well, this is kind of what it felt like. Weird head spins, inability to focus on anything, headaches, dizzy spells, nausea all punctuated by a surreal stoned feeling that I still have right now.
10.I have been irritable. In fact, I have been beyond irritable, and then I’ve been weepy, and then I’ve been angry, and then giddy, and then happy and then sad and then irritable all over again. I think that’s the steroids too.
So that’s what I found out about chemo after my first session. It’s been a hard few days. One of the most unpleasant side effects has been the back and hip pain. This is from the Neulasta injection I have to get. AC chemo is usually given once every three or four weeks. This generally allows the body to replenish itself with white blood cells, however I am receiving an accelerated form of chemo and am receiving it once every two weeks. This means that I don’t have the chance to replenish my own white blood cells and need some help. This is where the Neulasta injection comes in. It is given to you about 24 hours after your chemo therapy, into your stomach (ouch afterwards!) and it stimulates the body into making more white blood cells. They are made in the bone marrow of the spine so, while your body is in over drive being almost forced to make extra cells, your spine is in pain. I felt like I had been through a mangle at one stage but thankfully, it has passed now and my back is not too bad so that really only lasted two days. I hear that everyone doesn’t get this side effect. So don’t panic if you have to get it, this may not happen to you at all. Everyone reacts to things differently.
So it has been a bizarre few days. I feel spaced out pretty much all of the time. I’m really tired, it has literally taken me all day to type this into the computer. I know that some people have barely any side effects , where some people are deathly ill from their first cycle of chemo. There is just no way of knowing what way it will affect you. The only thing to make sure you keep doing is just keep on looking after yourself.
You will need to get yourself a thermometer. If your temperature drops below 35.5 or goes above 38 you need to ring the hospital straight away. Even if you don’t feel ill. As a result I have been checking my temperature almost feverishly. But surely better safe than sorry, even if it has become a slight obsession.
It’s just such a surreal feeling to feel so totally out of whack. I feel like even getting dressed in the morning requires an inordinate amount of energy. This morning it completely took it out of me for an hour, just putting on leggings and a top!
A lot of it has to do with the cocktail of drugs you’re on too I guess. For the three days after chemo, you’re on a mixture of anti-sickness tablets, steroids and some other stuff to help the steroids work. 15 tablets a day. Plus whatever pain killers you want to take if you do happen to suffer from the back pain from the injection. I have just never felt like this before.
All I can do now is hope that as time goes on I get some sort of grip on things. Get used to how it feels, and hope it doesn’t get much worse. I know when the second set of chemo starts it will be different again as that is going to be once a week, and I have a feeling, from the way the doctor said ‘We’ll cross that bridge when we come to it’, when I asked him about it, that it’s going to be much tougher going than the AC chemo. I just hope it doesn’t get the better of me and as time goes on, I can manage to sustain a relatively normal life and not feel so house bound. I guess only time will tell with that one.
TEN THINGS I HATE ABOUT CANCER
Ever since I got my diagnosis I’ve noticed things. Things I never would have noticed before. Now that I’m week one into my chemotherapy, I realise that these things don’t just bother me. I actually hate them. So here are my ‘ten things I hate about cancer’, so far, I’m sure there will be more as time goes on.
1. People become nothing but vessels full of clichés. They placate you with useless overly saccharine sentences like ‘sure the time is flying by’, and ‘it’ll be over before you know it’. Really? Is it? Well, while it might be flying by for you with your perfect health, these last three months have actually felt like an entire lifetime to me. I get that people don’t know what to say. I wouldn’t have known what to say either 4 months ago. But trust me when I tell you that I’d rather you said absolutely nothing than offer the false platitudes that people so haphazardly throw about the place at a time like this. Remember this, it won’t be over before I know it, I’m not that strong, cancer didn’t pick the wrong girl to mess with, and I don’t want to look back at this in a year and laugh about it. Or maybe I will. I don’t know. But neither do you.
2. Your body becomes public property. My breasts have now been seen by more people than I care to count and are the topic of conversations I’m not even present for. This is not something that sits well with me.
3. People seem to think they know better than you about your own illness.
4. People seem to think they know better than your doctors about your illness. This is one that really riles me up. I have had so many people telling me about how, cancer is a multibillion dollar institution. That they know the cures they just won’t tell us. That chemotherapy kills more people than it cures. That all I need to do is go for this alternative therapy or that alternative therapy and I will be healed forever. Well to this I say, balderdash! Firstly, I know too many nurses and doctors on a personal level to think that they have anything other than my best interests at heart. Secondly, why do you think you are the only person with access to the internet? From the minute I found out about my illness I researched and researched and researched some more. I know about everything you know about and have made my own informed decision on the best course of action for me. There is a reason that these other therapies are not used by hospitals. In my opinion that is because they don’t work as well. Since my diagnosis I have heard of so many people who have been cured thanks to chemotherapy and radiotherapy. In Ireland hospitals make no money from giving patients chemo treatment, in fact they lose money on it. Why would anyone keep the cure to any cancer secret when bringing out that cure would make them into instant billionaires? It’s not that I’m dismissing any other form of therapy. I’m not. I’m glad that other people have other belief systems, and that there is other research going on out there, not just the standard, but at the end of the day don’t force your rhetoric down the throat of a sick person who has chosen a path you, in your full health think you wouldn’t choose. At the end of the day, it is not you with the potentially fatal illness, it’s me. I’m glad you have a belief system to turn to, so do I, I believe in medical science. Please back off and respect that.
5. I have become a cancer bore. It’s true. It seems to be all I talk about. Or at least, most of what I talk about. I even feel agitated when people try to talk about less serious things. But it’s something I’m really trying to stop. I don’t want to be a cancer bore. I’m trying to focus on the fact that, for everyone else around me, life hasn’t stopped in the same manner as it has for me. So I need to cop on and start chatting about the frivolous. Who knows it might actually help.
6. People will feel like they are walking on eggshells around you. This can’t be helped. You will notice one throw away comment about someone’s male pattern baldness will be met with sideways apologetic glances. Don’t worry. Everyone will get over this soon enough, especially if you help them out by throwing in your own jokes about your soon to be bald head.
7. Everyone has an opinion on everything. I don’t care how your aunt’s friends cousin coped, I’m not her I’ll do things my way thank you very much.
8. I have become a total hypochondriac. So far I’ve been convinced that I have all of the other cancers all over my whole body. I thought I had mouth cancer because my gums bled after I brushed my teeth the other day. I hear this passes, but I’m still on tender hooks about the whole cancer of everything thing. I’m still not convinced.
9. I am bored. Having cancer, and being a cancer patient is boring. Interminably so. I’m still not sure how to deal with it. I’m sure I’ll figure something out soon enough but days drag, minutes drag, even seconds drag. I don’t have the capacity to focus on things for long periods, so, even watching TV, or reading becomes harder to do so passing time obviously gets harder. This is a work in progress and I’ll let you know when I’ve figured out how to beat cancer boredom.
10.Finally, the one thing that has been happening since the day I came home with the cancer banner around my neck. Cancer is everywhere. Literally. Every time I turn on the TV that VHI ad is on, the one where the woman has breast cancer. I change station, and there’s that Irish cancer society ad, I turn on the soaps and there’s Carol Jackson on EastEnders with her breast cancer. I even watched an episode of Archer on Netflix, a cartoon comedy about a male spy, I did this to ensure laughter and frivolity and no mentions of the C word, well guess what, in the episode I chose to watch he got breast cancer! I believe that when pregnant women find out they are pregnant they see other pregnant women everywhere as if by magic. I don’t know if this is true, but all I know is that suddenly everywhere I look, cancer is looking right back at me. It’s really very alarming.
So, there you have it. The ten things I hate about cancer. There are more. In fact I’m sure that soon enough there’ll be a list of things as long as my arm, but I have to try not get too negative. Who knows, maybe next week I’ll write ten things I love about cancer and have a whole new outlook. I won’t hold my breath for that one, but you never know.
HAIR TODAY GONE TOMORROW
It’s a little over a week and a half after my second chemo and three days before my third one. The second bout hit me harder than the first, more nausea, more exhaustion, more of everything. But then, I had completely expected that to be the case. What I didn’t expect though, was literally one day after the second chemo I started to lose my hair.
I mean, I did expect to lose it but I don’t think anything really prepares you for how it makes you feel.
I had thought all along that I wouldn’t really care about losing my hair. I do so many unorthodox things with it anyway, that having a shaved head wouldn’t exactly be beyond me, but I do care, I care a lot.
Maybe it’s because it feels like the final bullet in the assassination of my femininity and I hadn’t prepared for that.
Everything about having breast cancer has felt like an assault on my womanhood. From having one of my breasts essentially mutilated, to how I see my body, to now having a Mach 3 cut all over. I guess I just hadn’t realised I would feel like that. It’s not the look of it as such, it’s just so much of your identity is stripped away. You’re sick. You’re a sick person. It becomes all you are, all you think about, all you talk about and now, to add insult to injury you look sick as well.
As soon as the first big lumps of hair began to come out I decided to shave it all off. First to a blade 3 but a few days later, as small bald patches began to multiply, and I began to resemble a dog with mange, it was shaved as close as possible without getting my Gillette to it.
I did it myself. Franky thought I should wait a bit longer but I just wanted it done. I figured it falling out when it was just stubble would be less traumatic than having strands of hair follow me about the house in fistfuls for the next few weeks. So I took the razor, went to the bathroom and did it. Just like that.
Before I went in, I was sat on the bed staring at the razor for a minute, Franks came over to me, tears rolling down her cheeks, hugged my head to her chest and said: “you ready?” I just nodded and that was that. Decision made.
She came in the bathroom with me, and I could hear her crying through the buzzing of the razor. She did the back for me. When it was all done she took my face in her hands and said: “I’m so proud of you” and she kissed me. That was that. I was bald.
My hairless head has been met with rave reviews since and I was pleased to discover that I have a nicely shaped head. I had been afraid that without hair it would look horribly misshapen. People have even said the shaved head suits me. I’m not so sure I’d go that far but it doesn’t look as shocking as I thought it would which was a small relief. But it still affected me more than I thought it would.
I went out with my sister and my niece four days after I shaved it. Headscarf on. I felt like all eyes were on me. I’m used to people looking at me for various reasons. I have huge boobs, I’m covered in tattoos, as mentioned earlier I usually have some crazy hairdo going on, and I’m often holding hands with a girl. I’m used to odd sideways glances, but this time it wasn’t that sort of look I was getting. It was pity. You see someone in a head scarf and you know that person has, or has very recently had cancer.
So there it is again. Reduced once more to the cancer victim. They don’t see the tattoos or the alternative clothes, they see headscarf girl. The fact that I look a good bit younger than I actually am doesn’t help. It adds to the doleful looks. You can feel the emotion drip from them as they pass you. Hear their thoughts almost.
That’s the thing about it that I think bothers me the most. The pity. You see I don’t feel like I need people’s pity.
I realise that being sick is probably something that most people would say is deserving of pity. But I don’t see it that way because I feel lucky.
Not lucky to have cancer and have to go through all of this, but I feel lucky that I have so many wonderful people in my life. I feel lucky that I caught the cancer in time and that I, in all likelihood, am going to be ok, and pull through this just fine. I feel lucky to live in a country where I have access to the best of medical care. I feel lucky to have such amazing support. I feel lucky to have such a wonderful family. And I feel lucky to have such an unbelievably fantastic girlfriend to stand at my side through all of this. I feel lucky and I feel grateful and I feel humble but I don’t feel pitiful. I’m not angry or resentful. I’m not even really that sad. I feel so lucky to have realised that I have all these wonderful things in my life so that I can feel thankful for them.
This cancer thing is a definite pain in the ass but don’t pity me. Celebrate with me, the fact that I have a shot at a fantastic life, just as soon as I kick this thing into touch.
So the next time you see someone wearing a headscarf, do me a favor and smile at them, or wink at them, or even high five them, but please don’t pity them. Hang on to your pity for someone who might really need it.
ABSENCE MAKES THE HEART GROW FONDER
New adventures in Lyrica.
It’s been months, I know. Three to be exact. I guess a lot has happened. At the same time I almost feel like I have nothing to write about.
I didn’t want to get bogged down with a weekly update, writing the same thing over and over again for the 12 weeks of my Taxol treatment.
So here I am, two days before my 9th Taxol cycle. I’ve only four left to go then that’s it. For the chemotherapy anyway.
The last few weeks of it have been tough. At first the Taxol felt like a walk in the park compared to the AC, but after the 6th week it started to take its toll.
Getting it weekly is tough. It means you have no break, no time off, no time where you feel normal. For me, I am only just starting to feel ok on Thursdays, and then all of a sudden its Friday morning again and I’m back in the car on the way to the hospital. It is relentless and wearing, and I've been so tired. It’s a tiredness I can’t even describe, it can’t be eased by sleep or rest. I can’t even walk down the stairs without feeling like I’ve just run a marathon, all sweaty and horribly out of breath.
That hasn’t been the worst of it though. For the last four or five weeks I have been getting really bad facial neuralgia that comes on about two days after my chemotherapy. For those of you that don’t know, neuralgia is severe nerve pain.
It’s intense and horrible. All I can liken it to is the pain you get in your teeth and head when you eat something that’s too cold. It’s like that but worse, more intense and rather than it being a stabbing or shooting pain, it’s just there constantly all day long.
I have no idea how common it is. I know that peripheral neuropathy is really common for Taxol patients. That’s nerve pain in the hands and feet and I know it is related but I don’t know how rare it is to solely get neuralgia, thankfully I haven’t gotten neuropathy at all.
It is a shame though, because if it wasn’t for this, all I would be is tired and this whole process would be going a lot smoother for me.
I’ve found it hard to find painkillers that get rid of it. Nurofen Plus didn’t do a tap for it, Ponstan didn’t work, and even Tramadol didn’t work fully, although it did ease it significantly. Because of this, last week in the hospital the doctor prescribed me a tablet called Lyrica, I had never heard of it before, but it’s a tablet specifically for nerve pain. It also is used in the treatment of epilepsy and anxiety. The latter is something I should have paid a bit more attention to before I took it.
I am a bit anal when it comes to tablets in so much as I like to know everything about them, and exactly how they are going to affect me. So when I start on a new tablet I always read the leaflet in and out before I take them. I was only two or three side effects in on the Lyrica leaflet when I came across the first of many weird side effects. “May cause patient to have suicidal thoughts or have the urge to self-harm”. This was listed as one of the rare but not uncommon side effects. There were more like this, I won’t bore you with the list but another one I found to be particularly alarming, albeit funny, was “may cause abnormal growth in the breasts”. Now, as an already amply breasted woman, this is something I really didn’t want.
It stated more than once that they make you high, so when I took them (despite the possible boob growth) I was expecting that. What I wasn’t expecting was the manic mood swings, the paranoia, the inability to form a coherent thought, the mild nausea, the mild headaches, the dizziness, the effect it had on my balance and the blurred vision.
This all happened after only taking them for two days with most of the effects happening to me within two hours of taking my very first pill.
By Monday they had reached a peak, and when, despite the lovely side effects I was experiencing, I still got the bloody neuralgia anyway, I decided to ring the hospital.
I tried to pick up the house phone, bent down and when I stood back up nearly did a 360 spin into the fireplace. I figured they might not be the tablets for me. Thankfully the nurse informed me that blurred vision is bad (she said nothing about the other effects, which draws me to the conclusion that they are commonplace when taking Lyrica), and told me to come off them immediately and go back to my Ponstan/Tramadol mix.
I was relieved, although needless to say, I currently have a pain in my face with having a pain in my face.
But it’s all coming to a close soon. Just three and a half weeks left.
This is the first time I’ve really seen the end of it. Up until now it has still felt like forever away. Every week before this has been more than a month away from the last one. When you are literally spending all day every day in your room watching TV, or reading because you can’t even walk down to the sitting room without having a minor convulsion, more than a month might as well be a year. The days and weeks have been dragging by for me, but there is something about being able to say: ‘only four left’, that has me excited it all suddenly feels surmountable.
I know that I’m not out of the woods yet. I still have to get through these four cycles and after the chemo, I have a 3 or 4 week break and then I start my radiotherapy. I know that my radiotherapy will be once a day Monday to Friday for seven weeks, so that won’t be easy either, but I feel like I’m about to jump over the biggest hurdle and I’ve come through it all relatively unscathed.
FROM JEREMY KYLE TO MOBY AND BACK AGAIN
So, it’s been three weeks since my last chemo. I did the thing. The going out and seeing people thing, the getting out of my room before I totally fester in it thing. It was good, it felt like life again, like the real world, not this weird unyielding bubble I’ve been trapped in since January.
I’m still feeling the effects of the chemo. I’ve had a cold now for a week and a half and more of my hair fell out after I stopped the treatment. It was like a final hurrah, or a final ‘fuck you’ I’m not sure what way to look at it.
Still it’s over. That part anyway. So I sit here now, on the edge of my bed, on the morning of my first radiotherapy treatment. I feel a whole jumble of things. I feel glad that it’s all about to be over. I mean in 6 and a half weeks all of my treatment is over with. Providing nothing scary has happened, like more cancer grew or something, that’s it. I am for now, cancer free.
I’m nervous too though. 12 weeks of Taxol was a killer and that was only once a week, what’s it going to be like every day, Monday to Friday, for a month and a half? What effects will it have on my body? I mean I know it doesn’t make you sick, but everyone I’ve spoken to says that the tiredness is like nothing you’ve ever experienced before. And what’s my body going to look like after? Permanent skin discolouration, and changes to the feel and shape of my breast. The breast tissue toughens. Permanently. I’d only just gotten used to how it looks with a 7cm wide chunk gone from it, now I’ll have to deal with more changes. I really didn’t realise how concerned with my appearance I was until I got breast cancer. Still I’m sure I’ll cope. I always seem to.
Now it boils down to just this one more thing. All going according to plan my last radiotherapy will be on 8th of October. I have a meeting with my breast care surgeon, Mr. Allen, on 2nd of October, and a meeting with my oncologist, Dr. Morris, on 15th of October.
Hopefully that will be the one where I get told I’m cancer free, in remission and we’ll see you again in 6 months for your next mammogram.
It’s the beginning of the end of this road, I can see it. Off in the distance. All shimmering and loud and bright.
AFTER THE HOSPITAL.
I’m beginning to feel as though there is a sound track to my cancer. An audio visual accompaniment to my life as a cancer patient.
The day I was diagnosed it was Jeremy Kyle and his early morning theme tune. On the day of my operation it was Tom’s Diner by Suzanne Vega, and her eerie melancholic voice. Every time I was in chemotherapy, sat in their bright red motorised dentist chair/recliners, it was the game show, Tipping Point followed by The Steve Wilkos Show, on the tiny little personal TV that was part of the mechanics of the chair. Then while on the table today, with a giant machine that looks like a camera lens, rotating around me, it was the Moby album, Play. This was really fine by me because that is one of my all-time favourite albums, I think the problem was it’s also one of the most emotive albums ever made.
It was disconcerting. Lying there after the nurse left the room, arms stretched above my head, hands clasped together, breasts flopped to either side. I was bare and stuck and open. Lying there. The lights went out almost completely, the room was really dimly lit, save for a far off fluorescent on the ceiling in the corner and the green laser light that was shining on me from the ceiling to help mark me for the machine. A faint mechanical whirr kept time at my head and then, the low dulcet tones of The Shining Light Gospel Choir’s male lead holds sway over the room. “Why does my heart, feel so bad” he sang, “Why does my soul feel so bad”, and then the crescendo of Moby’s genius crashed in, and it was all I could do to fight back the sting of tears.
It’s not that I was overly upset by the experience, it’s just that it all crept up and almost became too much. I mean, I was already feeling a bit, well, weird. The radiologists, although lovely, essentially handle you like a piece of meat. Pushing you this way and that, fixing you into position. Talking over you, shouting numbers and measurements over your head. The only acknowledgement they give you during this process is to either tell you not to help them while they move you or to tell you to keep perfectly still.
I couldn’t help but feel slightly objectified, what with the two areas of my body that I am most self-conscious of, my breasts and my stomach, out and on show with no way of hiding them and the clinical nature of the whole procedure. It left me feeling a bit emotional, and then, just to throw some fuel onto the fire, that particular Moby song comes on, right at the point I was left on my own in the room. I defy anyone not to get teary in the same circumstance!
Thankfully though, I am terribly fickle and whimsical and the next song that came on was ‘South Side’ which instantly cheered me up. I’m just glad that while the song previous to ‘Why Does My Heart Fell So Bad’ was on, I was distracted by the radiologists poking and prodding. Given that the opening lyrics to that song, called ‘Porcelain’, are: “In my dreams I’m dying all the time”, I can honestly say that I may not have been able to contain myself had I had to listen to them at that moment, and the tears that were successfully blinked away, might have become and ocean on my face. I don’t know. So I suppose I should thank God for small mercies as they say.
Musical embellishments aside though, the whole thing is a very odd experience. There is really nothing quite like it. The machine literally barely makes a sound. You would think it wasn’t actually doing anything at all if you didn’t know better.
I would take this over the chemotherapy any day. I was in and out in an hour and a half. Every one after today should be quicker than that. I might experience skin changes and soreness around my breast, and I will be tired, but at least I won’t be sick all the time.
I can’t be sure but it think I will be able to cope with this for the next six weeks. I kind of feel like if I got through chemo I’ll get through anything.
So now the countdown really begins. It’s the beginning of the end my friends, the beginning of the end.
DAY TWO, A SMALL NOTE.
I literally can’t tell if its psychosomatic, or if it’s really happening, but I swear my boob is sore and feels a little burnt after today’s treatment. None of the side effects are supposed to kick in for about two to three weeks though, so I’m really not sure. I guess I’ll just have to wait and see how I am tomorrow.
I do know one thing though, day 2 and I’m already totally exhausted. I am actually dreading the next six weeks for that. I already feel like I’ve been doing it for a month and its only been two days. What am I going to feel like, even by the end of next week?
The good thing about it is that you are out so quick, just as promised yesterday, today was quicker and I was in and out in 45 minutes. 30 of those were spent in the waiting room, so only 15 on the table, which really, after spending 5 and 6 hours in the hospital at a time up until now, is a really welcome and nice change. And the St. Luke’s Radiology part of Beaumont is in a separate building and is lovely so it’s nice to sit in.
It’s just that, today I feel a bit, I don’t know, sad maybe? I guess it’s just that, judging by how tired I am today, I know that the fatigue thing I keep hearing about isn’t exaggerated, it means that any social life has to be entirely put on hold for the next seven weeks.
Now I know what you’re thinking, surely you’re used to that by now Aoife? After all you’ve had no social life at all for the last eight months!
Well yes, you would be right about that, but for the last three weeks since my chemo ended I have had a bit of one. It’s like I tasted freedom and now I don’t want to go back into the cage.
It feels harder now than it did for the chemo. More unfair somehow. Maybe that’s just because I reminded myself of how great being outside my house is. Maybe it’s because now I’m not actually feeling unwell, just tired, that I feel up to being social, and I really want to be. It’s like I have this voracious appetite for night life that I know will never be fulfilled.
Ok, so that was slightly over the top, but I do feel a little more cheated now than I did before.
Or maybe I’m just having a bad day, who knows.
Now more than ever though, I just can’t wait to have my life back.
FOREVER IS TOMORROW IS TODAY
“She stood in the storm, and when the wind did not blow her way, she adjusted her sails.” – Elizabeth Edwards.
‘What is that? Is it a bruise or something? Did you bang yourself?’ My nurse asked me this with a raised eyebrow as she squeezed and kneaded my breast between both of her hands for what must be the 50th time. ‘No’, I replied, ‘it’s a scar from one of the big blisters’. ‘oh good’, she said obviously relieved, ‘as I asked it, I was actually afraid of what you might say, I thought it might be a love bite or something and I was afraid of the answer I was going to get!’. We both laughed. She finished the breast exam, waited for me to get dressed and shook my hand heartily. She told me I had been amazing and that I looked brilliant. We ended the conversation by telling each other that we never wanted to see each other again, at least not in the same context, and I walked away smiling from ear to ear.
Forgive me, I know I’ve skipped ahead. You see the day before yesterday I was officially discharged from St. Luke’s Radiology and Oncology Unit in Beaumont, having gotten the all clear three weeks ago.
It’s difficult to go backwards when you’ve reached the end of something. Difficult to wilfully revisit things.
But I’ll give it a go.
I haven’t kept this updated all during my radiotherapy for many reasons. First off I didn’t want to keep repeating myself every single day for nearly 8 weeks. Secondly though, my usually buoyant and sunny disposition took a bit of a battering over the 7 ½ weeks of it. I had a hard time with it. After about the second week things started to get bad. I burned. Severely. Under my arm, under my breast, and the side of my breast all burned and blistered and swelled. I was in agony for a lot of the time. I couldn’t sleep. I had to have the dressings changed twice daily, and between that and having to have the radiotherapy every day the constant disruption to the skin and dressings meant the wounds were open and oozing all of the time. According to my Doctor, the reaction I had to radiotherapy is extremely rare. While most people do experience some sort of discomfort and slight burning of the skin by the end of their treatment, only 8% of people who have radiation therapy have the kind of severity of reaction that I experienced. It is apparently more common amongst women with larger breasts. So lucky me, once again my ample bosom had landed me in more trouble than it has proven to be worth.
So, as I’m sure you can understand, updating my blog really was the least of my worries. Especially when every movement I made sent shock waves of pain through my breast and armpit. You really don’t realise how much you move that area of your body until you can’t move it.
My radiotherapy experience was horrendous, no two ways about it, but if you are reading this and you are about to go into some form of radiation treatment, please do not despair or panic. As I said, only 8% of people get a similar reaction to mine. Most people sail through their treatment relatively unscathed, especially after having gone through the horrors of chemo.
But if you do have a bad reaction, rest assured that the doctors, nurses and radiographers take amazing care of you. You are there every day so they can keep a close eye on you, and in my experience they are all lovely, kind, warm, amazing people who literally cannot do enough for you.
They know that, burns or not, it’s tough going for everyone. It’s relentless because it is every day. Your bones and muscles begin to ache after a few days because you’re moved into such unnatural positions to accommodate where the machine has to pin point, and you have to hold said positions for at least 15 minutes each time remaining perfectly still.
They know how uncomfortable and invasive the whole thing is, so they do try their very best to make you as comfortable as they can.
The best advice I can give you if you are ever in this situation is, let them do their job. They have to move you in very specific ways, none of which are comfortable, but they do this for a reason. The machine they use works in measurements of millimetres. One slight movement from you and the whole thing is off. After all, they have gone to college to understand how this machine works, they know better than you and everything they tell you to do is for a reason. If you follow their instructions the whole thing will be over as quick as it can be. You don’t want to have to be in there any longer than you need to be. There is no point in complaining; it has to be done either way so you may as well make it as smooth an experience as is possible.
My last session of radiotherapy was four weeks ago now, and I’m still experiencing some pain. The nurse the other day told me it was all perfectly normal considering the severity of my burns. Thankfully though all the wounds had healed up about a week and a half after my last radiotherapy and now my skin is totally healed, with just some very minor scarring.
The final week of radiotherapy was like nothing I’ve ever experienced. Emotionally I mean. In the same week I had my final consultation with my oncologist where he officially discharged me and confirmed that I was cancer free. The week previous I had been to see my surgeons’ team and they had told me the same thing. They don’t discharge you though. You remain with them going forward. From now on I will have to have a mammogram every 6 months, and it is through their breast clinic that this is done. The first of them for me is in January. It means that from now until then I have no more hospitals. I literally don’t know what to do with myself!
Being given the all clear does strange things to you. Obviously you are happy and relieved but for me it was like someone peeled off all this old skin I’d been carrying around and let the new shiny pink skin underneath finally breathe.
I’m still terrified. I check my breasts almost obsessively, and every pain and twinge sends me into a minor panic. I suppose I will be like that from now on. At least for a while, but to be told that it’s gone. It was incredible. I had this elation, this intense feeling of freedom that I could never have imagined before.
I began to take stock and realise that I’ve changed, in such a big, deep indescribable way. I see things so differently, almost more, than I did before.
All of my priorities have shifted. I have no time for some things and more time for others. I am unashamedly fixated on the pursuit of my own happiness. I don’t have the patience for people’s silliness and small problems. If you are not on my side, simply move out of my way. I have no intention of letting others drag me down. I feel more ruthless, fierce almost. This is a good thing, before cancer I was a bit of a walk over.
I just feel like I don’t have time for the petty squabbles that people fill their lives with. They are distractions. People distract themselves from going after the things they want because they are afraid of failure and it is often easier to just stagnate. I am not allowing myself to do that anymore.
I don’t care what people think of me anymore either. Everyone says that don’t they? But I think, until something like this happens, you don’t really mean it.
I’ve become proud of my body in a way I never would have been before. I feel like, yes I know I’m over weight, yes I know it’s not perfect, but look at what it has just done, look at what it just carried me through. I respect it more now if nothing else.
I’ve also developed a massive sense of respect for some people in my life, and lost all respect for others. I have a bullshit detector that just won’t quit at the moment.
I am just different. I’m stronger. I feel like David in the David and Goliath story. I took on the giant and I won.
I am ferocious, I am gracious, I am grateful and I am humbled.
I just feel as though this has to have happened for a reason. I’m determined to make my life better than it was before. I don’t want to have beaten cancer for nothing. I want me beating cancer to be the reason I make the best of my life.
Once we hit the end of 2014 I’m going to hit the ground running, with everything I’ve learned as my weaponry and everything I’ve been through firmly behind me.
There is only one way to go from here and that is forward. No moving backwards.
I want to make a promise to you, to all of you who have stuck by me, been there for me, reached out to me, or even just silently read this and rooted for me from the beginning: once you have enough momentum built up you will keep moving forwards, and no force on earth will be able to stop you.
Thanks for the big love, I’d be nowhere without it.