I've just found a note where I had written down some of the descriptions of cancer given in Siddhartha Mukherjee's book, The Emperor of All Maladies: A biography of cancer.
- a lethal shape shifting entity
- the emperor of all maladies, the king of terrors
- an all-consuming presence in our lives....infiltrating every thought
- the most relentless and insidious enemy
- stretches out the encounter with death.... dying, even more than death, defines the illness.
I was reading the book earlier this year. (It's excellent by the way, although I admit it is currently in the massive pile of books I have started but not yet finished.) These descriptions definitely sum up what cancer was to me. I felt like I was being stalked by an enemy that was just waiting to attack, but it wasn't going to be a fair fight. Me: small, weak, blindfolded, weaponless. Cancer: big, looming, omnipotent, invincible.
I realise now just how dark my thoughts were. It's no wonder I had various people encouraging me to go for counselling to help me deal with the double whammy head fucks of bereavement and genetic testing. At the very end of 2013, to shut people up, I did just that, and I'm so glad that I did, because I think it saved me. (I have been going to counselling at Coping with Cancer, a local charity that I can't speak highly enough of.)
One of the things that was really messing with my head was the idea of being diagnosed with cancer, and suffering through x many years of destructive, painful, miserable cancer "treatment" which would stop me living my life and doing the things I want to do, knowing full well that death from cancer was inevitable and just a matter of time (the experience of everyone in my family who has had cancer, which is almost everyone in my family). I desperately wanted to make the most of my life while I was well but I didn't know how. I didn't know the answer to the question "what is the meaning of life?", or "what is the purpose of my life?". I'm not religious, I don't have children, I felt like I had ended up where I was more by chance than by choice. I wanted my life to have a meaning, and a purpose, so I could focus and aspire, achieve, be happy and be fulfilled. There's a line in a song that really resonated with me: "all this breathing, and the truth that's in your last breath, don't it make you wanna cry?" I was thinking about end of life a lot, and couldn't bear the idea of reaching a point where I knew I was about to die, and was looking back on my life regretting not doing things, or not being the person I wanted to be (or worse, not even having figured out who I was.) Despite this, I was stuck, and afraid of change, because I didn't know what changes to make. What if I made the wrong decisions?
My counsellor suggested I read the book Feel the fear and do it anyway. I'm sceptical of self help books, but I think my counsellor is an absolute legend, so I went and bought it and started reading it the next day. It's actually ok! But there was one part that really, really hacked me off, to the extent that I took the book in the following week, read out the offending passage, and had a massive rant to him about it. Jeffers basically goes on about how when something bad happens you shouldn't think "that's terrible", you should think "it's a learning experience". She then says that's the case even if you have cancer. She knew because she had had cancer and it was a great and wonderful experience for her. I was fucking furious, having just witnessed my mom's slow and painful destruction by cancer. How could someone be so stupid and thoughtless to suggest that cancer could ever be a good thing?
Fast forward to the present day. I've had my own cancer diagnosis, I've started chemotherapy, and I feel happy, clear-headed and alive. Yes there are moments when I have a freak out, or when I'm in a bad mood, because I'm human. But I mean overall, the overwhelming feeling I have is positive. It's been puzzling me but I think I've reached a point where I've realised I am going to have to admit that (for the first time in my life) I was wrong.
Physically I'm going to be going through some horrible shit. My human body has let me down massively. (Bad body!) There's no denying that. But mentally and emotionally I'm good, and the strange thing is I think that's because of the cancer, not despite it. There are several contributing factors.
My surgeon gave me an earnest and convincing speech about how while they are both labelled "breast cancer", what I've got and what my mom had are two completely different things. What happened to her will not happen to me. I'd spent a week at that point knowing I had cancer but nothing more. I'd felt like I was dangling over a black hole (of death), with my sweaty little hands trying desperately to cling on to the edge, but they were losing their grip and I was slipping. Then Mr Big Strong Surgeon came along, leaned over, and pulled me up and back on to safe ground in one effortless move, and then threw the fear that had been plaguing me both before and since diagnosis (that I was destined to the same horrible fate as all the women in my family before me) into the black hole instead. The key thing here is that in addition to dealing with the cancer I've got, I am now eligible for the risk reducing measures that I wasn't before so I can actually look towards a future without feeling every day like my body is a ticking cancer time bomb, waiting to go off. I can actually see a future for myself now. Before the cancer diagnosis I couldn't.
I feel braver! I wrote about bravery before. I said that people keep telling me I am brave, but that I'm not. I still stand by what I said in that post because when people have been calling me brave it's been specifically in relation to "dealing with cancer". I think my fainting at the sight of a cannula shows that in that respect, I'm not! Here I'm talking about something broader. Cancer has opened my eyes and made me really see how very precious time is, and I don't want to waste it. If I want something I'm going to go for it. If I fail, or get rejected - and sometimes I will - so be it. I'll pick myself up and move on. But I reckon that more often than not, the bravery will pay off. (I like this J K Rowling quote: "It is impossible to live without failing at something, unless you live so cautiously that you might as well not have lived at all - in which case you fail by default.")
My perspective and priorities have changed. Since being diagnosed with cancer, I'm just not worrying or stressing about the small things. And I now view most things as the small things. I can now see what really matters to me.
- My health.
- The people who brighten my day.
- Experiencing and enjoying being alive.
That's it really. So now, if I consider the question about the purpose of my life, I'm very happy with the answer "To make the most of life and fucking enjoy it."
I will end by insisting you watch a video which a friend shared with me. I actually first watched this the evening before I found out I had cancer, and I thought it was brilliant then. He then reminded me of it on the day when my hero/surgeon informed me I wasn't going to die, and I watched it again with that whole new perspective. It's Rik Mayall's speech from when he received an honorary doctorate from the University of Exeter. He absolutely nailed what matters in life. It's amazing! Please watch it!
"It is your future, yours to create. Your future is as bright as you make it..... You go out there and have yourselves a fucking good life!"
I've had enough of this ridiculous Ice Bucket Challenge. I can't even bear the phrase "Ice bucket challenge" and it's now at the point where it's midnight, and instead of sleeping, I'm seeing red and need to let off some steam*. I'm well aware that many of my friends who will read this have done the "Ice Bucket Challenge". The last thing I want to do is offend or alienate anyone who is my friend so I am just hoping that you understand that if you are my friend and have done the "Ice Bucket Challenge" that this is not aimed at you personally, because I think you are lovely and wonderful and you are one of many, many people who I think very highly of and .... oh bloody hell why can't I just have a rant without apologising for it. Ok....
It's not a challenge though, is it?
Having someone throw a bucket of cold water over you while someone else films it so you can post it on Facebook isn't a challenge. End of.
Do you even know why you're doing it?
I think the people who do are in a minority. How many of you think it has something to do with cancer and chemotherapy? Some of you do! But it doesn't. Although for some reason, Macmillan have jumped on the bandwagon, have a webpage about it, and have actually tweeted that having a bucket of cold water poured on your head replicates the side effects of chemotherapy. WHAT THE ???? Fuck off does it. The "Ice Bucket Challenge" has nothing to do with cancer. How many of you know it originated as awareness raising/fundraising for something called ALS? And of those of you that could answer yes to that question, how many of you know what ALS actually stands for? Or, how many of you know about Motor Neurone Disease, beyond "errr isn't that what Stephen Hawking has?" I don't see much actual awareness raising about ALS going on in any of the fucking endless number of "Ice Bucket Challenge" posts and videos I have seen.
How many of the people who have had a bucket of water thrown on them in the UK donated money to charity?
An absolute shitload has been raised in the USA for the ALS association (over $80million if the Huffington Post is right). In the UK apparently the UK Motor Neurone Disease has gained £250k in donations as a result of this. That's actually not that much at all, considering how many people have jumped at the chance of "taking part" in this "challenge". Cancer Research alone got over £8million earlier this year when we all took photos of ourselves without make up on. I thought that was a bit stupid at the time but I joined in because I thought it was incredible how much money was being raised. Although I didn't donate to Cancer Research, I donated to a local charity called Coping with Cancer who are amazing.
Anyway, yeah yeah there will be some individuals who learned all about ALS/Motor Neurone Disease as a result of this, and then donated to the appropriate charities. (In fact, I will give you the benefit of the doubt and state here that I am sure this applies to all of my friends who have done it.) But, in the UK, those people are blatantly in a minority. So if it's not a challenge, and it's not raising much awareness, and it's not raising much money, what is the Ice Bucket Challenge? Pointless attention seeking from what I can tell. Oh yeah, and the kind that appears to have led to the death of an 18 year old.
Rant over. I am now going to go and pull some more hair out of my head and continue telling myself it's the Ice Bucket Challenge that has put me in a bad mood.
*Did just have the ironic thought that a bucket of ice cold water over my head might actually be what I need right now. Anyway.
In my last post I said that today was the day I was due to turn into a hormonal, miserable, emotional nightmare. Not so peeps! I'm in a bloody good mood! I didn't need the steroids they gave me at all, I just needed a day in my beloved motherland Birmingham! Best city in the world. Best people in the world. My heart belongs to you, Birmingham!
Here's why I'm so happy....
Yesterday my lovely friend Lucy drove me to Brum for my appointment at Trendco, a wig specialist in Birmingham. In all honesty, while I was desperate to go because of the anxiety of the impending clumps-of-hair-falling-out-and-turning-into-George-Dawes doom, I was not looking forward to it. My association with wigs is that of my mom having to wear them for most of her last 6 years alive because of her own cancer and chemotherapy treatment. After my mom died at the end of 2012, one of my jobs was to clear out her house- this included getting rid of her wigs. I'm not sure there's anything more creepy than walking in to the bedroom of your mom who has died and seeing her hair displayed on a stand. And then walking in to the spare room and seeing her hair displayed on another stand. And then finding a bag of a dozen of her old wigs that are past it, but have been kept (knowing mom) "just in case". And then being given the wig that she was wearing when she went in to the hospital before she died along with her handbag etc......Anyway, you get the point. I don't like wigs. Having said that, I don't want to walk around bald either, and I'm not convinced I can pull off looking anything other than like a cancer patient in a headscarf so I knew an amazing wig was what I needed.
Luckily of course, I was in Birmingham. Best city in the world, best people in the world. I was instantly put at ease by the lovely woman Naomi who I had my appointment with at Trendco. Naomi spends all day with people, aged from 3 to 98 years old, who have lost their hair due to illnesses like cancer and alopecia. She was absolutely fantastic, knew her stuff, and got a measure of me within minutes. The first wig I tried on was a synthetic one, which I hated, and Naomi's next move was basically to find me a real human hair wig, which is very, very much like my own hair, and which was absolutely the right one. My wig is called Emerald! Naomi sorted out the parting for me, got me straightening it, and explained how I could have it cut and coloured how I wanted. That was it - sorted! At the moment it feels kind of big and weird to me, but that's partly because my own hair is still there underneath it. But once that's gone if it still feels too big and thick, along with having it cut and coloured, Naomi can thin it out for me a bit too.
I'm not skilled at taking selfies in mirrors but here are a couple of photos I took this morning.
So if I wake up tomorrow and find that my hair deserted me overnight, I'm ready for it!
Next job: learn how to draw on eyebrows in case they abandon me too.
Hello!
Well, it's fair to say I've just had a pretty bizarre week.
Saturday: (having found out on the Thursday I would be starting with chemo instead of surgery) Got a letter in the post telling me my chemo information session would be on Monday. Pissed off! I had plans for the Monday to go to Birmingham to meet a new friend and shop for cancer related essentials (fake everything, essentially). We rearranged for Wednesday.
Monday: Went to the chemo information session and found out I would have my first chemo on WEDNESDAY! Shiiiit! Not mentally or emotionally ready! Plus this meant cancelling the Birmingham trip again so not practically ready either. Argh!
Then I had the shit well and truly scared out of me. I didn't think it was possible to fit the words "fatal", "emergency" and "life threatening" in to one short PowerPoint presentation that many times. The reassurance was that if you call the 24 hour emergency number (on the red emergency alert card that you have to carry with you at all times), for every tiny little thing, then they promise to make sure you won't die as a result of chemo. Phew! That's ok then. My friend Marta that went with me just kept reminding me that they are just making sure you're ok and that whatever the chemo was doing to me it was doing to the cancer too. Yeah, she's right, take that cancer!
I'm not sure what I learned at the chemo information session beyond: phone the number if you so much as get a sore throat and, you will have red wee for 24 hours after chemo.
I went home and started a mad panic of trying to get myself organised, lining up friends to keep an eye on me over the next week or so in case I needed it.
Then I wrote a blog post which I'd had in my mind about the Page 3 vs Breast cancer campaign, Check 'em Tuesday. I tweeted a link to the No More Page 3 team and they messaged me saying they'd share it tomorrow, as it would be Check 'em Tuesday. Cool! How exciting to get a message from NMP3! :-D
Tuesday: Tuesday was meant to be a day of getting shit organised. I had a dentist appointment in the morning to fix up a dodgy wisdom tooth and the one next to it. I had a doctors appointment booked to ask about things like the free prescription card, flu jab, and sick leave at work, and I planned to go to boots and buy one of everything. Pretty much. Did all this, while getting literally hundreds of messages via Twitter, Facebook and email about my blog post! Apparently it struck a chord/hit a nerve with a lot of people! To date, over 8000 people have read it. I was contacted by people at Buzzfeed and The Stir and also someone at ITV news! What the shit?! My little blog post that I wrote as a distraction from chemo nerves. It was only about a week before that I had the guts to share my blog with my friends... Now thousands of people reading about my wonky nipple and wobbly arse! Gawd. Still, I figured, if that many people were reading it and sharing it then I was probably far from alone in feeling the way I did. I hope...!
Wednesday: FECking chemo day. (My chemo will be 3 or 4 cycles of something called FEC and then 3 or 4 cycles of something called T.) Ok, so I was nervous, but my lovely friend Marta kept reminding me, this will kill the cancer. Chemo is a good thing, blast the cancer! So I went in to the hospital telling myself that I too was now a bad ass superwoman who was going to kick this cancer's arse. Cancer can fuck off! Yeah! I'm hard as nails! Bring it on! Then the nurse put the cannula in me. And I passed out. I passed out! It wasn't even connected to anything yet! Not feeling so bad ass anymore. I came round with about 8 nurses and important looking doctors in suits crowded round me, hooked up to a bleepy machine and with an oxygen tank ready. How embarrassing! They spent the rest of my time there teasing me about it! Oh well. I'm sure they'll take extra good care of me next time now. (Apparently next time I get to go in a recliney chair.)
Having the chemo at the hospital is the easy bit. You sit there for an hour while a nurse talks to you (in my case, makes fun of you!) and puts the drugs in. Don't feel a thing. While I was sat there I got a message from writer and columnist Daisy Buchanan about my blog, so I was emailing her about that on my phone as she wanted to do an article about it for The Debrief! And then I sat there for an extra 2 hours with the cold cap on in an attempt to not lose my hair. (Although I'm sure my scalp is sore already meaning it probably hasn't worked. Damn.)
For anyone who reads this who has chemo to come and wonders about the cold cap - it wasn't a problem. For about the first 15 minutes your head feels the way your ears do when you've been out in the cold in winter, and then you get used to it and it's cold, but not painful. Worth giving it a go! It works for some people.
However - one note about the cold cap and looking after your hair. Before having the cold cap on they cover your hair in conditioner (so the cold cap comes off easily without ripping your now very precious hair to shreds). Then when they remove the cold cap they tell you, don't wash your hair more than once a week, don't use any products on it, don't use a hairdryer or straighteners on it... I don't know about anyone else, but as someone who washes their hair every day I can assure you I would actually choose a wig over my own hair, stringy and greasy after a week of neglect. I'm washing it tomorrow and hoping for the best.
Anyway! I went home feeling great. Thought about ordering a pizza but was talked out of that idea. Luckily. Because a couple of hours later, I started being sick. I'll spare you all the details but lets just say it got to the point where I had my face on the toilet seat and could not lift it. I decided at that point, no more chemo, I would take my chances with just surgery and radiotherapy. Obviously I was calling the emergency number, expecting after the information session on Monday to be rushed in to hospital in an ambulance. But no! I was told to take some of tomorrow's anti sickness medicines there and then, with as little water as possible, then consume nothing more and just go to bed. It did do the trick, and I slept kind of ok that night.
Thursday: Woke up feeling ropey as anything but after a few hours I had settled down, got my instructions of what tablets to take from the chemo nurse, and was reassured that next time they would give me better anti sickness meds, and to definitely keep going with the chemo!
And then from this point on not a lot has happened. I haven't been sick since. I went to bed at about 8pm on Thursday and slept til 10am today, Friday. At which point I took some more meds, and then dozed for another couple of hours. Then I've sat around a lot and started to get quite bored and fidgety.
Tomorrow I am off to Birmingham, finally, and I can't wait! With luck I will get my fake hair sorted tomorrow. (Yes, I have realised I have a real issue with the word "wig"... It's made it on to my list of bad words, along with "moist".)
And then I think the next round of FECking chemo fun begins on Sunday when:
1. I get my first visit from the district nurse for daily injections of white blood cells. Woopee!
2. I'm no longer on steroids, meaning I am apparently going to turn in to a hormonal, miserable, emotional nightmare. SORRY IN ADVANCE EVERYONE! Just tell me you love me and it will all be ok and I'm sure I'll be fine.
To anyone who reads this who has FEC chemo to come - you will get through it. It might be shit for a bit, but you'll get through it. I promise. I'm actually the biggest wimp of them all and if I can do it, anyone can. x
Hi everyone,
I've just got back from the hospital after my first chemotherapy session. I'm ok although the nausea is starting to kick in. So please excuse this being quite brief. If I do feel well enough later I really want to get a post written about chemotherapy itself for my new friends who will be starting chemo very soon.
But I did just want to write a message to everyone who has taken the time to read my open letter to The Sun.
On Monday night I came home from my chemo information session at the hospital and decided I wanted my next blog post to be an open letter to The Sun. I really didn't think anyone would read it beyond the people who know me and are reading my blog anyway. I tweeted the link to @NoMorePage3 who retweeted it and the response has completely blown my mind! Over 7,000 people so far have read my original blog post. It has also been republished on Buzzfeed, and The Stir also wrote an article about it! There's now an article on The Debrief too!
This was all completely unexpected. Overall the response I have received has been incredibly positive and supportive. A lot of people have told me that I put in to words what they had experienced themselves, and what they felt. I have had lots of kind messages of support for my treatment. And I am so very grateful. I want to say a MASSIVE THANK YOU! All of this made me feel very positive at a time when I would have otherwise been overwhelmed by anxiety.
My letter has sparked some debate. I normally like a good debate, but I just don't think I'm up to it right now. My focus has to be on getting well. So I will leave other people to continue the debate that the wonderful people at No More Page 3, and their 200,000 plus supporters, have been having for some time.
I did just want to clarify a couple of things though.
First of all, I am not against Coppafeel. Awareness raising is good. I support awareness raising about breast cancer, signs and symptoms, being breast aware. My issue is simply with using Page 3 as part of a breast cancer awareness campaign. That's my personal opinion, I know not everyone will agree. That's ok. This leads me on to my second point....
I generally avoid reading the comments below articles but I have spotted a few having a right go at me for what I wrote. I would just like to remind people that I am just a regular person who started a blog. I wrote my opinion down. I'm not a celebrity, or a campaigner, or a columnist - I'm not someone who normally has a loud voice. I didn't for a second expect it to get the attention it did. I guess it did get attention because it struck a chord. I don't know. Anyway, if you disagree with me, fine. But I'm not going to worry about it - I've got more important things to deal with right now.
For all the support though, thank you. It's meant a lot.
I'm now going to go and take one of the anti sickness tablets that they gave me!
Sarah x
Dear The Sun
I've been meaning to write to you for a while. My name is Sarah, I live in Leicester, I'm 33 years old, and a few weeks ago I was diagnosed with breast cancer.
This is me. I tried to smile for the picture, but as you can see I'm looking pretty uncomfortable. That's because the photo was taken outside the Osborne Building of the Leicester Royal Infirmary today just before I went in for my introductory information session about chemotherapy.
I'm writing to you because "Page 3 vs Breast Cancer - Check 'em Tuesday" upsets me.
I know that many women, especially younger women, don't check their breasts regularly, or don't know all of the symptoms of breast cancer to look out for. (As an example, my own symptom wasn't a lump, it was a slight dent at the side of my nipple.) And younger women in particular often don't check because they really don't think for a second they could be diagnosed with breast cancer - or at least not until they are much older. So obviously I'm all for raising awareness about breast cancer and encouraging women to be breast aware! I'm only 33 and it was as a result of my own vigilance that my cancer has, hopefully, been diagnosed early enough to get rid of. Awareness raising is a good thing.
The reason I am upset is because I don't believe for a second that Check 'em Tuesday is in any way a genuine attempt to encourage more women to be breast aware because of a concern for their health. It is obvious to me that it is a response to the powerful No More Page 3 campaign (whose petition asking David Dinsmore to take the bare boobs out of The Sun has just exceeded 200,000 signatures). Breast cancer is being used by you as a gimmick to try and justify the existence of Page 3. Not only do I not think it is genuine, I also don't think it is an appropriate approach to raising awareness.
Like any other 33 year old woman in the UK, I have a lifelong personal history with Page 3 (despite the fact that I have never bought a copy of The Sun in my life). When I was in primary school, I was Art Monitor. This involved putting newspaper on all the desks before messy art classes. Me and my friend used to take great pleasure in hunting out all the Page 3s and putting them on our other friends' desks. At primary school age it was just funny. Naked was funny. Big boobs were definitely very funny. I hadn't really clocked the fact that it was only women that ever appeared on Page 3.
By the time I was a teenager I was well aware of the fact that Page 3 was only ever photos of topless women because I was regularly embarrassed and made to feel uncomfortable as a result of them. When you're a teenage girl on the bus on the way to or from school, and the man sat next to you is ogling Page 3, what is the best response? I never knew. I'd look away, trying to pretend I hadn't noticed, feeling at best embarrassed, and at worst, unsafe.
In my twenties I became aware of the fact that the images like those on Page 3 of the Sun, along with all of the other sexualised images of women in the media, were making me feel inadequate and ugly on a daily basis. I hated my body. Small boobs, thunder thighs, wobbly arse, pasty pale skin etc etc. I wished I was beautiful and had a better body. I would be so much happier if I did, I knew it.
I'm now in my thirties. I've still got the small boobs (although they'll be going very soon because of the cancer), I've still got the thunder thighs, the wobbly arse, the pasty pale skin and so on. But I feel something now which is much more powerful than the self hatred that can result just from looking in the mirror. I'm angry. I'm angry at the sexist portrayal of women everywhere in the media, and as far as I'm concerned, Page 3 is the worst example of it. Page 3 presents women as objects. The women featured on Page 3 are there for no other reason than to have their bodies leered at by men. The message Page 3 sends out is that beauty is young, slim, usually white, and with big boobs. That message is loud and clear, and personally, even if I had not been diagnosed with breast cancer and actually read The Sun, would drown out any messages about breast awareness on Check 'em Tuesday.
If The Sun genuinely cared about women, and raising awareness of breast cancer, you would do so without Page 3. Instead of linking breast cancer awareness with something that tells women that their bodies are nothing more than objects that exist for the pleasure of men (and that if yours isn't like the one on Page 3 then it's not really good enough) how about focusing on real women who have survived breast cancer? Because there are many inspirational, strong, funny women out there with incredible stories to tell, that could really help other women, promote breast awareness, and not only save lives, but give hope to those who have been diagnosed and who are struggling to come to terms with it or to cope. This includes young women, in their twenties, thirties and forties, who can speak honestly and openly about breast cancer and everything that happens from the first moment that you think something might not be right, through to diagnosis and treatment, and life "after" cancer... Including what it is like to be scarred or lose one or both breasts as a result of cancer. Women who have been through it could give the message that you can still be beautiful after a lumpectomy or a mastectomy. That someone will still love you. That you'll still be good enough.
I've written this as an open letter because I want to encourage anyone else who reads it, if you haven't already, to sign the No More Page 3 petition and then encourage your friends and family to do the same. I'm not a prude. I have no problem with boobs. But featuring them in a family newspaper (and it is a family newspaper, with regular promotions aimed at children) is not right, and now using breast cancer as a gimmick to try and justify the objectification of women on Page 3 is completely out of order.
Sarah
PS Update 16/09/2014
(No, sadly this isn't an update to say I have had a response!) My incredible friend Rebecca who was diagnosed with breast cancer on the same day as me has also written to The Sun about this. Please read and share Rebecca's letter too.
I'm not sure if it's because yesterday I got the appointment letter for the chemo info session that I need to go to tomorrow, or because I had a day off the booze, but I could not sleep last night. I'm well tired. Scuse any typos.
Anyway, yeahhhhhh some anxiety is definitely kicking in. I've been dropping references to a selection of deliciously attractive potential side effects of chemotherapy in to my blog posts (and pretty much every conversation I have with anyone these days). Although for the record, it's really been a "prepare for the worst, hope for the best" kind of attitude on my part. One of the nurses told me it's all in the mind, and that with my positive attitude and strength (!) I will be fine. I'll lose my hair (unless I get lucky with the head freezer) and I might throw up, but they can give me hardcore anti-sickness medication, and hardcore anti-pretty-much-every-other-possible-side-effect medication too. All I need are some excellent Microsoft Excel and PRINCE2 project management skills to keep on top of which drugs I should be taking and when. And I have those skills!
I've been believing in the power of my mind to successfully instruct my body to succumb to as few side effects as possible, and also reminding myself of the superwomen I've met who have been through this already and mostly been ok throughout. Kick ass. But.... Right now I can't help it. Knowing chemo is imminent is making me anxious and I can't find my fucking Rescue Remedy.
So this is a cry for help! I've made it this far in pretty much one piece by knowing what works for me. When I'm anxious I need distractions, and they need to be funny. Some of you have been naturally brilliant in this respect. You know who you are! (Yes! You, you, you, and especially You! By the way, thanks! Oh wait... No, sorry I didn't mean you.... I meant... Oh never mind!)
I hate anxiety! I want to blast it as much as I want to blast the cancer. Friends, send me stuff that will make me laugh please! Don't all rush at once right now and then tick this off your to do list and forget about it though, a sustained effort would be most helpful. (Maybe I need to put those outstanding project management skills to good use now and do a project plan along the lines of: those whose surnames begin with the letters A-D send me something funny today, E-H tomorrow, I-L on Tuesday and so on...)
And when I say funny, I mean accidentally-snort-and-choke-on-my-tea funny. Like this (and I insist you read it right now!), which is my favourite ever.... book review. (But PLEASE! You probably weren't, but just in case you were about to be extremely kind, don't buy me the book. Because, I'm not joking, I've just ordered it for myself.)
Rude stuff, silly stuff, weird stuff - all eagerly welcomed. Please, distract me with some humour. It really helps. It really does.
Cheers 'en.
x
To all my friends who have started reading my blog because you're secretly looking forward to the gruesome details about things like which hair on the body is the first to fall out or whether I end up being one of the unlucky ones who gets both oral and vaginal thrush as a result of chemo.... this post is not for you. (And yes, I know full well who you are you sickos!)
To anyone reading this because they are interested in the genetics of hereditary breast and ovarian cancer.... sorry about that first bit. It'll be all serious genetic business in this post from now on, I promise.
Earlier this year I had a genetic test looking at my BRCA1 and BRCA2 genes. No mutation, deletion, or duplication in either gene. As mentioned previously the Genetics Clinic hoped this was because there was a BRCA fault in my family and I did not inherit it, rather than the family history being caused by a fault in another gene (or genes) which I might have inherited but which I couldn't currently be tested for. You can read this post for some explanation as to why I never really thought it was a dodgy BRCA1 or BRCA2 messing with my family.
Anyway, I was interested in which other genes might have been killing off the women in my family one by one for generations but I was finding it quite hard to get much useful information about genes related to HBOC other than BRCA1 or BRCA2. My experience has been that once you wade through the masses of information online insisting on repeat that most breast and ovarian cancers are not hereditary, and then through all the information about BRCA1, BRCA2 and Angelina Jolie's risk reducing mastectomy and reconstruction (which some people don't seem to realise is very different to a "boob job" by the way), you're not left with much to read (that makes sense anyway).
However, there was one gene that was cropping up in conversations in some online forums I am part of (for women around the world whose families have been stalked for generations by breast and ovarian cancer - yes, more superwomen!) It was called PALB2. Some women in the USA had had genetics tests that also looked at this gene and lo and behold - they had no BRCA1 or BRCA2 mutation, but they did have a PALB2 mutation, and a miserable family history of breast cancer. The little bit of information that I did find about PALB2 grabbed my attention.
PALB2 stands for Partner and Localiser of BRCA2. In language that might make sense to someone with the same level of scientific knowledge as me (ie, little to none) - this is a gene that works together with the BRCA2 gene - so if there is a problem with your PALB2 then that might stop the BRCA2 gene doing its own job properly (and the job of BRCA2 is "tumour suppressor" - ie somehow (it's complicated... I dunno) stop cancerous tumours from developing).
Anyways, I found it interesting because my family history was sort of like a BRCA2 mutant history, but not quite. So the possibility that a gene that affects my BRCA2 being able to do its job might be messed up in my family was intriguing.
Then I got diagnosed with cancer and stopped any research about HBOC because, well, other more pressing matters on my mind.
UNTIL! Last week PALB2 made the news! Yes, yes, it turns out that mutations in PALB2 raise the risk of breast cancer in women by almost as much as mutations in BRCA1 and BRCA2. Not only that but it seems to cause some increase in risk of ovarian cancer too. So now, rather than being one in a long list of genes that might or might not increase a person's risk of breast cancer by a fraction, PALB2 is now being taken seriously as an important gene that's dangerous if it's defective in any way. It probably won't be long before it's tested as routine along with BRCA1 and BRCA2 on the NHS for those of us at high risk of HBOC.
I was debating whether to include some links to further info here but I expect they will quickly become out of date. If you're interested, just google PALB2.
And I await my latest genetic test results eagerly. PALB2 is one of 97 of my genes being scrutinised by clever lab rats at the moment. I'll let you know when I know!
This week I decided to stop being a chicken and actually tell my friends outright that I am writing a blog and share the link with them. I was nervous and a bit embarrassed! But people have been really, really kind and supportive, and I'm glad I shared.
This post is dedicated to, and especially aimed at, all the people who read this that know me personally....
I love compliments. My aim is to be one of those confident, self assured people who doesn't need approval from others, but I'm not there yet. I care what other people think of me and so I love getting compliments! But I think I generally have a good idea about whether or not a compliment is deserved. Since being diagnosed with cancer I have lost count of the number of times people have told me I am brave, strong and inspirational. I'd love to be brave, strong and inspirational, but I'm not and I want to set the record straight here. Actually, two out of the three just don't apply to me. The third, I would like to work on, starting today.
Brave
I'm bloody not! Bravery is facing up to something without showing fear. I'm terrified! And I have no choice in this matter either. I have cancer. I can't change that. The only way to (hopefully) "beat it" is to have chemotherapy, surgery, and radiotherapy. It's not brave to do these things, it's the only option I have. I got my appointment for my chemotherapy introduction session in the post today. It's on Monday (yeah! effing cancer has ruined my plans yet again!), and so I'm almost certainly starting chemo within the next week. Anxiety levels are rapidly increasing now. I'm sure on the day itself I will be crying like a baby. Not brave.
Strong
Nope! As above, I don't have any choice but to get on with things. In one of my early blog posts written before I was diagnosed, I said that I do not have the strength that my mom did, and that I wouldn't cope with cancer. Turns out, you do just get on with things, because you have to. But if I appear to have displayed any strength it isn't my own. I'm being held up, and held together by the people around me. I fucking love my friends! They are the ones who are being strong for me. I don't feel like I'm fighting cancer on my own. I've got the hardest, baddest, most formidable army of friends all around me. That's where the strength comes from. (By the way, thank you peeps, I love you. Mwah! Mwah! XO)
Inspirational
Errrrrrr.... I actually have no idea why people keep telling me I'm inspirational. I think all people have seen me doing so far is going out and getting drunk a lot. I don't think people should be inspired by that. (And drinking alcohol increases your risk of breast cancer, folks. Don't do it!)
However, I suppose really there is more to what I'm doing than getting drunk a lot, and while I don't think I'll ever be brave or strong, I guess inspirational is something I would like to aspire to. So I would like to explain, because there is something that's been bothering me recently. It came up in a conversation with a friend today, and has been on my mind all afternoon, so I decided to write about it. (Friends, pay attention - this is the bit I am aiming at you.)
You only get one life. Make the most of it. I'm not talking about the big picture. It doesn't work like that. You have to make the most of every day, one day at a time.
When I was diagnosed with cancer my world stopped. I spent 3 days in shock, struggling to come to terms with what I'd been told. Then I made a decision to make the most of every moment I have that I am feeling well. (Before, during and after treatment). I think some people have been surprised that I have been happy over the last few weeks, and have been having lots of fun. That's a very conscious choice and effort. Soon enough I am likely to be spending a lot of time with my head in a toilet, rubbing coconut oil in to my sore, bald head and bonjela into my ulcerated mouth (possibly simultaneously). I'll deal with it when it happens, but right now I feel well (when I'm not hungover). At the moment, every day, I have a choice. Worry, stress, get upset, be miserable. Or go out and enjoy myself while I can. It's a no brainer isn't it?
Being diagnosed with cancer has made me see that I do have a choice, every day. And I am choosing to make the most of every day that I've got. If I could possibly be in any way inspirational to other people, then I'd like it to be because of this.
Friends, don't waste your days, make the most of every one of them. If you are healthy, you are lucky. Don't take it for granted.
Don't stress unnecessarily over the little things. If you're guilty of looking for things to be miserable about, stop it. Don't feel hard done by every time something doesn't go your way. Life can be difficult and unfair, but try and keep some perspective, and pay attention to all the things that are good in your life. If you don't have cancer, you could start with being grateful for that! If that comes across as a bit stroppy, it's because I am actually being a little bit stroppy, but I think I have the right to at this point in my life, right?! Seriously, don't let the little things get to you. They're not worth it.
Don't like your job? Change it. (If you think that's scary (and it is) or don't know where to start then I can recommend this book: How to find fulfilling work. It was recommended to me by a friend and I thought it was brilliant.)
Stuck in a rut? Try something new. Maybe learn something new, or do some volunteering!
Had the same circle of friends for years? However lovely they are, go out and meet some more new people. I don't think you can have too many friends. (Maybe have a look at Meetup and find something you're interested in doing. This is where I found my book club (read: beer club) and yes, I was worried at first that because it was something I found on the internet I'd turn up and be greeted by a bunch of weirdos, but that's not what happened. The other people are as nice and non-weird as me. Ha!)
Something you want to do but you're scared to? Be brave! Do it! (Maybe read this book, it's actually quite good!) Missing someone? Go and see them. Love someone? Tell them. (Equally, hate someone because they're mean to you? Tell them to fuck off! Do it!)
You only get one life peeps, make the most of it while you can. Can't think there's much worse than regretting not doing something after the opportunity has passed.
A cancer diagnosis brings with it ups and downs (understatement). Yesterday I had a shit day. I had a short notice appointment to see my oncologist (for the first time). There had been some debate about whether I should actually have surgery first or chemo first. It turns out that a grade 1, her2-, small tumour like mine shouldn't really be in the lymph nodes. And normally a grade 1, her2-, small tumour would have a treatment plan of surgery first then chemo. But the dodgy lymph nodes were bothering the Breast Care Nurses and I was sent to discuss with the oncologist.
After an hour and a half in The Most Depressing Place On The Face Of The Earth (the Oncology Outpatient Waiting Area at the Leicester Royal Infirmary) I finally saw the very impressive and engaging oncologist who swept in to the room and said in no uncertain terms I was to start chemo right away - ie within the next week. She didn't know why surgery first was suggested, a supposedly non aggressive, slow growing tumour like mine that had misbehaved and made it's way to the lymph nodes already anyway needs treating with chemo immediately. There would be international expert consensus of chemo first on a case like this. Eeshk. Could I have just one more week of normality before treatment starts? No way. End of.
I went home and cried, and cried and cried. I think that's pretty much the first time since diagnosis that I've actually broken down like that. I did punch the bed in fury.... It's soooo fuuuuucking annoyyyyying to be feeling really, really, well, and know that in maybe 6 days time someone's gonna hook you up to a drip that will make you very, very ill. And bald. I suppose in some ways, despite the diagnosis, hospital appointments etc, this has not felt 100% real until now.
Anyway. I hit rock bottom yesterday, but was very promptly pulled back up by a hoard of superwomen. I'm a member of a group called the Younger Breast Cancer Network (UK). I think it should be renamed to "Fucking Amazing Kick Ass Superwomen (UK)". The online forum is an invaluable source of support, information (often of my favourite kind which is "too much information") and most importantly, lots and lots of humour. They had me playing "Spot the Wig" in The Most Depressing Place On The Face Of The Earth. I found myself laughing at the image of myself with drawn on eyebrows smeared across my forehead (makeup has never been a skill of mine), dentures falling out and toenails falling off (sexyyyyy)... I went from bawling my eyes out to crying my eyes out with laughter at these sent to me by one of my new superwoman friends who has gone ahead and ordered herself the Jessica Alba, haha! (In case you were wondering, I'm gonna go with the Jessie J with a fringe despite the fact that later on the same is listed as a Nicki Minaj...errrr... never mind, I've got cancer, I'll do what I want.)
I've already met up with several of these superwomen, and feel lucky to be getting to know such strong, funny, inspirational people. As well as a bald head and peeling feet, cancer brings with it new friends. (And that's not even mentioning the incredible friends I already have, who I will gush about plenty over the coming months). As long as my oncologist doesn't wreck any more of my plans with surprise last minute appointments, I'm off to Birmingham on Monday to meet with a superwoman who was diagnosed on the very same day as me. That's the one with the Jessica Alba! But on Monday we will shop for some serious fake hair, industrial strength makeup, and then reward ourselves with lunch and plenty of wine. I actually cannot wait. And then I'm ready for it. Blast the shit out of this fucking cancer. And I will work my way through 6 series of the Sopranos while that's going on.
I end with a quote someone shared with me that fits well: "On particularly rough days when I'm sure I can't possibly endure, I like to remind myself that my track record for getting through bad days so far is 100%, and that's pretty good." (And getting through those bad days is so much easier when you are surrounded by superwomen.)
I was back at the hospital on Friday morning for more test results and now have a somewhat better idea of what cancer is inside me.
Tumour size
I've now had 2 ultrasound scans, a mammogram, and an MRI. My right side is all ok. On the left side there is a 22mm tumour and a 6mm "satellite" tumour close by. (The little one will be a result of a cancer cell breaking off from the main tumour and starting to divide and create another tumour). Tumour sizes are divided in to 4 classes. (T1-T4) Mine is T2 (2-5cm) so not the smallest category but still on the small side.
Lymph nodes
There was also cancer found in the core biopsy of the close by lymph node that was enlarged. I expected this. The lymph nodes are part of your body's immune system. It's the lymph nodes job to catch things like waste material, bacteria, viruses, and cancer cells. Cancer spreads through the body either through the bloodstream or lymph system. Cancer in the lymph nodes is very common with breast cancer. Most cancer cells that end up in the lymph nodes get killed off by your body's immune system. But some may escape. So the fact that there is cancer in the lymph nodes does mean there is a risk that cancer has spread elsewhere. In my case, with a smallish, low grade tumour (see below) there are unlikely to be any tumours anywhere else in my body (I will be having a CT scan at some point to check) but there might be odd cells floating around. (It is chemo that deals with these little bastards, more on that another time.)
Stage
The stage of your cancer describes how far it has spread. I won't know this until after surgery and my CT scan (surgery will give a better idea of how many lymph nodes are affected, and CT scan will check the rest of my body for tumours). But I think at best it is stage 2B.
Grade
Breast cancer is graded on a scale of 1 to 3. The fact that my cancer is "Grade 1" is good news. It means that the cancer cells look similar to normal cells and are probably growing quite slowly. Grade 1 cancer cells are less likely to spread.
Receptors
When looking at the biopsies they test to see whether the cancer is responding to the hormones estrogen and progesterone, and the protein her2. The results of this determine what drugs you are given.
Mine is very strongly estrogen receptor positive. (ER+) This means the cancer is feeding off estrogen in my body. So the doctors will be shutting my ovaries down (before removing them, sooner rather than later I hope because of my ovarian cancer risk). Having breast cancer that is ER+ seems to be a good thing as there are lots of different drugs available to prevent recurrence after treatment.
Mine was also her2 negative (her2-). This was good news, as her2+ cancers are aggressive.
What does this mean?
It's a shame there is cancer in my lymph nodes, as there's a risk of spread, and I will need a bunch of lymph nodes removed, putting me at a 20% risk of lymphedema. However, other than that, from what I can tell, under the circumstances, it is pretty good news. It's a smallish, not particularly aggressive tumour, and there are lots of treatments I can have to blast it.
My treatment plan isn't entirely clear yet. I will write about that separately hopefully tomorrow.
I watched this TED Talk video the other day: Fighting Cancer with Dance (Ananda Shankar Jayant). It's inspirational, and well worth watching.
There was one statement that really stood out to me. Ananda describes the moment that she was told she had breast cancer. "I thought I knew what fear was. That day I learnt what fear was."
Tell me about it.
Worries
Wednesday 2nd July. I looked down when I was getting dressed and saw that my left nipple was leaning in slightly. I panicked at first then I told myself I was being stupid. Had it always been like that and I hadn't noticed? Was my "cancer worry" out of control? Should I actually call the Genetics Clinic and take them up on their offer of getting a Clinical Psychologist to address my cancer-related hypochondria?
Friday 4th July. "I'm sure it's nothing but there's something I'm not sure about. Can you check?" My GP examined me, and wasn't particularly concerned. She suggested I come back in 3 weeks time, at a different point in my cycle, to see if anything had changed, and then if I was still worried she could do a 2 week referral for an ultrasound - just in case, because of my family history. I left the doctor's surgery, not feeling reassured, but feeling sick. I just wasn't happy waiting 3 weeks and then another 2 weeks for an ultrasound. I went in to work and spent several hours googling, going off to the toilets at least every half an hour to have another look, and another panic.
If you find a lump, there are all sorts of things it could be. 9 out of 10 lumps are benign. I couldn't feel a lump. I was googling "nipple going inward causes" and found absolutely nothing to reassure me it was probably not cancer. I had no symptoms of infection, I hadn't had any surgery, I was not pregnant or breast feeding, I was not approaching the menopause. I was pretty much left with cancer as the only likely cause. I went in to a meeting room at work for privacy, called the Macmillan helpline and spoke to a nurse. She started out trying to reassure me. Then we went through the list of possible other causes, ruling them out one by one, and she ended up suggesting I phone the GP back that day to ask for an immediate referral....you know, just to get it checked sooner rather than later and cut down on the time I would spend worrying. She told me she would be thinking of me. Again I felt utterly sick. I called the GP back, and got the 2 week referral.
Over the next 2 weeks while I was waiting for the ultrasound appointment I tried to not think about it. But there were still moments of fear. Like when the appointment confirmation letter came through and the words "suspected cancer" had been highlighted in pink. I kept telling myself how unlikely it was that I had cancer. I must have injured myself at some point without realising and had some sort of weird scar tissue. Or maybe it had always been like that and I hadn't noticed. I didn't tell anyone about my appointment. I figured it would either be ok, and there was no need for anyone else to be worrying, or it wouldn't be ok - and I'd tell people then.
Diagnosis
However scared and worried I felt over those couple of weeks though, it was nothing compared to the life shattering fear I was about to experience.
I realise now that like "love", fear is one of those words that is greatly misused. There should be a different, specific word for the fear you feel when you're told you've got cancer. It's a fear that reaches depths no other fear can.
8.30 am Friday 18th July. I arrived at the hospital and was asked to change in to a gown. I sat in a little room and waited for the nurse to come in. The first nurse explained she was a trainee, and would do the examination first, and then another nurse would come in and go over it again with her. She examined me, couldn't see or feel anything unusual, and let me know she was satisfied that all was ok. Relief! The other nurse came in and went through the same process. She also said there wasn't anything that concerned her. More relief! I think I was actually grinning at this point. I apologised for being a hypochondriac, explained again about my family history and the recent genetic testing process and how that had me in a bit of a spin. The nurses were lovely. They said they would send me through for an ultrasound anyway, for my own peace of mind.
So I waited in the corridor to be called through for the ultrasound. I think at this point I was the youngest woman in the waiting area by about 20 years. I felt silly. I was then taken through to the ultrasound room, and laid down ready for the scan. I was thinking it was an interesting room with all the various screens and machines. Then the nice, friendly woman doing the ultrasound stopped talking. That's ok, she needs to concentrate. After several minutes she told me she would finish the scan and then she would explain. Explain what? I was only having this scan for my own peace of mind. Several more minutes of scanning and saving lots and lots of images. "I can see some things that I think explain the changes to your nipple. I'd like to send you through for a mammogram, and then I'll explain."
Back waiting in that corridor for the mammogram. The relief I felt ten minutes ago - gone. I felt sick, I was sweating, and I was freezing cold. The mammogram was over quickly and then I was there again, waiting in that corridor. I spent the next ten minutes watching the various nurses and doctors who had examined and scanned me rushing up and down the corridor, in and out of different rooms, deadly serious expressions on their faces, avoiding eye contact with me. Several other nurses stopped by to ask me if there was anything they could get me. I knew something serious was up. I felt very small, and alone.
I was called back in to the ultrasound room and told that the scans had shown "some changes" and that they wanted to take biopsies there and then. What the fuck? I laid back down so they could scan me again to do the biopsies. What changes? There was a 22mm mass under my nipple, a 6mm mass a bit lower down, and some of my lymph nodes were enlarged. I was told that they would use a fine needle to take cells from the lymph nodes and the small mass and that it would be sharp like an injection. I didn't feel it. I was then given a local anaesthetic so they could take a core biopsy of the larger mass. I was told the local anaesthetic injection would sting for a moment. I didn't feel it. I just lay there, looking at the expression on their faces. One deadly serious, the other sympathetic. I asked if there was anything it could be other than cancer. "No..... I'm sorry."
I will never forget that moment. I won't forget the expression on her face. I won't forget the sound of her voice. That's the moment my life as I know it ended. Nothing will ever, ever be the same again. I feel like I'm still in that moment, like time hasn't really moved forward since then. I'm stuck lying there, looking away from the woman, and across to the dark image on the ultrasound screen, hearing the words "No.... I'm sorry" echoing round my head.
I don't remember leaving the room, or what happened next. The following few days are a blur.
Limbo
To be honest, cancer has been a big part of my life for a long time, so my own diagnosis wasn't really a surprise, but it was a shock. I expected it to happen, and I was worried, but with the youngest diagnosis in my family being at age 47, I thought I had a few years breathing space at least (and time to argue my case for preventive measures). No such luck.
I had to wait a week to find out anything more about the cancer. I knew I had it, but until they got the biopsy test results I wouldn't know how aggressive it was, how far it was likely to have spread, what my treatment plan would be.... what my prognosis would be.
I like to think I'm a fairly optimistic person. However, I'm not sure anyone can genuinely feel optimistic knowing they have cancer, but not knowing how "bad" it is. It messes with your head in serious ways. I'm not afraid of death itself, but I am afraid of being alive, knowing I am going to die soon, not being able to do anything about it, and being too sick to live and be happy, and be myself. I described in a previous post what my mom's life was like from diagnosis to death. 6 years of illness and suffering. I can't face that.
Somehow I got through that week of limbo with help from friends and beer.
I was back at the hospital on 24th July to meet with the surgeon. Waiting for that appointment was torture. How I wasn't actually sick on the floor I don't know. But under the circumstances the news was "good". The 22mm mass was cancer - but it was grade 1, possibly grade 1-2. Slow growing - good news. The little mass and the lymph nodes had "atypical" cells, but they hadn't immediately found cancerous cells. It was suspicious, I would need more biopsies, but the fact that the initial biopsy of lymph nodes wasn't full of cancer was good news. When I asked my surgeon if I would die, his response was a resounding no. That's another moment I won't ever forget. It doesn't cancel out the "No...I'm sorry" moment a week earlier, but it has helped a lot.
I'm now back in a bit of a limbo. Last Monday I had an MRI and more biopsies of the little mass and the lymph nodes. I don't get any more results until this Friday, 8th August. I'm expecting the biopsies to show cancer. It was a different woman who took the second set of biopsies, but having seen the MRI scans she had the same "this is serious" face and tone of voice as the first.
The never ending list of things to fear
I'm scared about treatment. Going in to hospital, being put to sleep, and having the dangerous bits removed with a knife. Sewn back together, bandaged up. Do your exercises, but don't overdo it because you could get lymphodema. Something that can never be cured once you have it. You'll be at risk of that for life. Recover from the surgery, hope there are no complications or infections. And as soon as you're well enough, go through 4-5 months of being poisoned on a 3 weekly basis to try and kill any remaining cancer cells. Hair will fall out, eyebrows and eyelashes probably will too. Fingernails and toenails might go. Likely to be sick a lot. Apparently everything, even water, tastes like sewage. Sore skin, painful gums. Exhaustion. Even if you are lucky and feel well, you can't live a normal life because of the risk of picking up infections from other people at a time when you're immune system has been shot to shit.
I'm scared of looking like a cancer patient. I don't want people staring, feeling sorry for me, thinking I look weird, ugly, ill. I'm not going to rock the skinhead look. I'm not excited by the idea of getting loads of wigs with all sorts of cool, different hairstyles that I wouldn't normally have. I don't care how nice the headscarves are. I don't want them. I just want to stay as I am, normal like everyone else.
I'm scared of being dependent on other people. I'm an independent person. I like to do things myself, look after myself and be in control. I'm afraid of being a burden on the people who have been kind enough to offer their support throughout this. I'm afraid that they will never be able to see me as the same person that I used to be. I'll always be the one with cancer.
I'm scared thinking about how, if I do get through this treatment, that I will still need to go for regular scans and checks for years to come. Waiting for results every time to find out whether the cancer has come back, or spread.
Most of all I'm terrified that I can't beat this, and that I'm going to die young, after spending a lot of time ill, unable to do the things with my life that I want to do. Despite the fact that I've been diagnosed with cancer, there have been moments over the past few weeks where I have felt very happy. Then I remember what I'm facing and feel so, so sad. It's not fair. And one of the things that seems most unfair about all of this is that being diagnosed with cancer gives you incredible perspective. You know what is important, and appreciate every little thing. Every moment. Everything that makes you smile, or laugh. Everything that is weird, or interesting, or new. Everything that is ordinary and normally goes unnoticed. You appreciate everything at the point where you realise it might all be taken away from you.
That moment when you get diagnosed with breast cancer a few months after being told the good news about not having a BRCA1 or BRCA2 mutation.
Yeah. I just had that.
I've been debating what to do about this blog. I know I'll want a place to rant over the next few months, and an easy way to keep anyone who knows me and who wants to know what's going on up to date. But I also feel strongly about my original plan to keep a blog about being a non-BRCA mutant and record the stuff I find out about that. I'm too lazy to keep two blogs. I've decided to keep this original blog going but now it will also include my experiences of fighting cancer. So what I did intend to keep as a fairly anonymous log of information about HBOC is about to get very personal (and very sweary).
I will keep my original posts there as it's useful background but I will reintroduce myself properly now...
4 August 2014
My name is Sarah, I'm 33 years old, I live in Leicester (UK) and I've just been diagnosed with breast cancer. I've had various tests and don't have all the results yet, but I know I have a grade 1, 22mm tumour, as well as a smaller 6mm lump and some lymph nodes that appear somewhat dodgy (the first biopsies only showed atypical C3 cells, not cancerous cells, but bearing in mind there's definite cancer nearby, they have taken more biopsies to look again). I don't yet know what stage the cancer is, or what hormones it is feeding off (or not). But I would bet that it's ER+. I don't yet have a firm treatment plan - I go back to see my surgeon this Friday, 8 August, but it looks like surgery at the end of August, followed by chemo and then possibly radiotherapy. At first I was shitting myself about the treatments but now I say BRING IT ON. I want this thing gone, and asap. I've got a life to get on with.
The genetics clinic were a bit stunned by my diagnosis. My DNA has now been sent straight off to a research study that's going to look at 97 of my genes to see if that can work out what specific kind of mutant I am. And I now have the go ahead for not just getting rid of the cancer but lobbing both sides off asap to stop this from happening again. Good riddance.
People have been so lovely to me, and keep telling me I have an amazing attitude. I'm just going to say here, for the record, I'm terrified. And fucking pissed off.
