Nipples nipples nipples nipples nipples

Something the other day prompted me to ask my friends if I was blogging about nipples too much. But then this happened:

Another friend told me that they had shared my blog with their colleagues. One of them, who didn't know until they read my story that a wonky nipple could be a sign of breast cancer, has now gone to their GP with their own wonky nipple and has been referred for a scan to be on the safe side. As this is someone who has been pregnant, it's more likely to be caused by that than cancer - but you should always get things checked and I'm so glad they are.

So rather than worry that I have gone on about nipples too much, I now think I'd like to start a national "check your nipples" campaign.

Most people know that a lump can be a sign of breast cancer. (Having said that, if you find a lump, don't panic because 9 out of 10 breast lumps are not cancer). But there are other signs of breast cancer that you should be looking out for, lump or no lump.

A reminder of my own situation: there was a slight dent to the side of my nipple, which was making it lean slightly. It was really subtle. I spent a lot of time looking, poking and prodding but I couldn't feel anything suspicious and so I wasn't sure if it was anything or not. But as it wasn't something I'd noticed before, I got it checked out. Sure enough, there's a cancerous tumour underneath it, pulling on the skin, causing the wonk. Myself, my GP, my surgeon and I've lost count of how many nurses have poked, prodded, squeezed and rubbed - and no-one can feel the lump. But it's there. The wonky nipple was the sign.

So I know from first hand experience that it is important to be aware of the signs of  breast cancer other than breast lumps, and nipple changes is one of them. I think it would be great if everyone who read this went away and spent some time getting to know their nipples (ha!) and then checked regularly and looked out for changes. Then if there are changes – get them examined by your GP.

Things to look out for include nipples:

• becoming inverted (turned in) when they weren't previously
• changing shape
• changing position
• developing a rash
• crusting
• producing discharge.

All of these can be caused by things other than cancer, but you should always, always get them checked out immediately.

Don’t assume that if you’re young you’re ok for now. Unfortunately my situation is not as uncommon as people would like to think. I know because I’ve already made friends with a lot of local women, the same age as me, who are going through the same thing right now. (We went to the same university, at the same time! We get together and talk about cancer, and chemo, and Reagans and Mega. It's bizarre.) Check yer nipples kids.

And don’t assume that if you’re a bloke you’re ok. It’s less common for men but around 400 men are diagnosed with breast cancer in the UK each year. Check yer nipples lads.  

And there are other signs too. You can read more about different signs of breast cancer here.

Eye of the tiger

It’s Day 21 and I have now officially finished Chemo Number 1. I’ve been to Oncology this morning and they said that I’ve got the eye of the tiger. They said I am a fighter, dancing through the fire. They said I am a champion and you’re gonna hear me roar, louder than a lion. That’s what they said!

They gave me my blood test results. My blood is fine and fully recovered from the attempted annihilation of the first chemo. I am a fighter.

They are going to give me better anti-sickness medication tomorrow so I can take on Chemo Number 2 with my head held high and my fist in the air instead of my head in the toilet and my fist clutching the loo roll. I’ve got the eye of the tiger.

They said that otherwise I can expect the same from the second chemo as I did from the first. A few days feeling tired, then back to my life and back to running in preparation for my 5k race on 20^th September. I am a champion.

They said I have not been given a date for a CT scan because I don’t need a CT scan to check for cancer spread because my cancer is a small, slow growing tumour. It won’t have spread and there’s no need. Then they heard me roar. Then they agreed to give me a CT scan for my own peace of mind. (As much as what they say should be reassuring, we all know what happened the last time someone thought I was fine and gave me a scan for my own peace of mind. They found cancer. I need the scan. I need to know.)

I am apparently so well that the oncologist doesn’t want to see me next time. I can just get on with things for the next 2 chemos, unless I have any issues. I will see them again in 6 weeks.

I came out of the hospital, in to the sunshine, feeling amazing. I was smiling. I was standing taller. I practically danced along the streets and in to work.

Who'd have thunk it. This "cancer journey" really is full of surprises.

Being open and honest

Something else people keep telling me I am brave for is being open and honest in this blog. As openness and honesty is coming up in conversation so much I thought I'd explain, openly and honestly, here.

Aside from the original plan to log useful information about hereditary breast and ovarian cancer, there are now two main reasons I am writing this blog.


1. Writing is cathartic for me

There you are, bumbling along in life, doing whatever it is you're doing. Bit of work, bit of play, make the dinner, wash up, read a book, walk the dog, go to the pub, da de da de da. Then you're told you've got cancer. Your life as you know it just ended. Just like that, in an instant. And suddenly, urgently, you need to become an Expert in Cancer.

You need to understand the difference between a Grade 1 and a Grade 3 tumour. The difference between Stage 2b and Stage 3a cancer. You need to learn about what your lymphatic system actually does and how. You need to understand what things like ER, PR, HER2, TN, DCIS, FEC-T, DIEP, FNA, WLE, and SNB mean. You need to understand the reasons why your chemo might be adjuvant or neo-adjuvant. You need to know the signs of neutropenic sepsis.

And you're trying to learn about and understand all of this shit while attempting to come to terms with the fact that you have a life threatening illness (am I going to die?), you won't be able to have your own children (what are the rules on adoption?), and your hair is all going to fall out (how can I avoid every potential situation where I might get laughed at for being an egg head over the next 6-9 months?).

It's too much! It is for me anyway. Writing helps. The more I write, the less I have polluting the inside of my head. As an example, one of my earlier posts was about Fear. The stuff in that post was weighing me down - until I wrote about it. I've barely thought about the day of diagnosis since. It happened, I thought about it, I wrote about it, I moved on.

Also, I want to keep clearing the cancer stuff out of my head so that there's more room for the non-cancer stuff in my life. The 7 weeks and 2 days since the ultrasound of doom have been intense and filled with limbo-induced anxiety. Waiting for test results (am I going to die?), waiting for the treatment plan to be agreed (which kind of incapacitated freak am I going to be next week? A one-boobed woman who can't make herself a cup of tea or a bald woman who needs help to lift her head out of the toilet after some extreme vomiting?), waiting for all sorts of terrible chemo side effects to kick in (not really the case in the end though), waiting for my hair to fall out (I know am going on about this non-stop but it's so stressful and I'm almost at the point where I'm ready to shave my head just to put an end to it). So I've been talking about cancer and chemo all the fucking time. But once the hair is gone, there's going to be a lot less limbo and anxiety, and a lot more just getting on with the routine of it all. 

I can't wait. Because I'm still me you know. And I don't want to be the cancer bore. I want to be the friend who does the 30 days abs challenge with you. I want to be the friend who takes the time to talk to your daughter about art and music when other people are just complimenting her on her pretty dress and shoes. I want to be the friend who is there when you need someone at 1am to rant about your prick of an ex boyfriend. I want to be the friend you eat too many crepes with at the Christmas markets. I want to be the friend who sits in the pub with you all evening putting the world to rights.

So anyway, this blog is how I plan on getting through the coming months. Shit will happen, I'll write about it, I'll move on.


2. I want to be open and honest with you

Ultimately this is just who I am. I'm not good at keeping things to myself. I've got a big mouth and I talk too much. I've been like that my whole life (I can still think of plenty of examples even from primary school) and I know I'm not about to change now, even though at times it can get me into trouble or leave me feeling like a bit of a twat.

The thing is though, I've discovered there's something very liberating about being completely open and honest. What I am doing in this blog is being upfront about the following:

• I am a human being with a human body
• I have feelings and emotions
• I am flawed and can behave like an idiot

Being honest about these things means I don't need to go through the stress of trying to pretend to be someone I'm not. Anyway, I have just been working on the assumption that everything on the above list applies to every single person who reads what I write. And that's probably why people have been so nice to me, rather than laugh or be mean, even though I've admitted to:

• having a defective human body,
• having to go to counselling,
• being wrong,
• getting angry,
• being scared and anxious,
• being over sensitive and overreacting to things
• hair loss and obsessively pulling hair out of my head,
• having a receding gum, 
• feeling ugly,
• being a control freak,
• being such a wimp that I passed out at the sight of a cannula....

The list just goes on and on! But yeah, in my opinion, no-one's perfect so no-one should expect anyone else to be perfect, and no-one should feel like they need to try and pretend to be perfect. I've discovered that you can be open and honest about all the ways you are a flawed, idiotic human being and still be surrounded and supported by the lushest friends in the world. That feels very nice. I recommend trying it.

I am woman, hear me roar

This week I'd been feeling very sensitive, and overreacting to little things (knowing full well that I'm overreacting but being completely unable to stop myself from getting upset anyway). This was made worse by the fact that as of this last week, when I'm stressed I can sit and obsessively pull hair out of my head, which then gets me even more stressed and upset. I've been trying to work out what's going on, and with the help of some clever, observant, objective people I think I've got it.

At the beginning of this week someone told me that I may feel fine now, but I am about to get very ill. I didn't know why but that one comment crushed me. I have made a concious effort to be positive, and to maintain as normal a life as possible. I thought I was doing a good job of that and I felt good and people have been supporting and encouraging me. Plus I've met so many women who have been through this and have been very well overall. But suddenly I felt like an idiot for being positive. I felt like an idiot for thinking this might not be so bad. I felt like an idiot and was sure that everyone else must think I'm an idiot too. Cue several days of unnecessary over-analysing and beating myself up over literally anything and everything.

Different friends asked me, "Do you think maybe what you're actually upset about is having cancer?"

Huh. At first I thought "No! I am genuinely very upset about [insert ridiculous thing here]". But having been asked the same question a number of times I decided maybe I should reflect on it, and I feel much better for having done so. (Turns out it's much easier to get over being upset, when you know what it is you are really upset about.)


Realisation number 1: I'm a control freak

I already knew this. But am now understanding it in the context of the situation I'm in. Might sound odd, but I've been giving very little real thought in recent weeks to the fact that I have cancer. As soon as I knew what was going on, I put all of my attention and energy to the treatment plan.

I'm not dealing with cancer. I'm dealing with chemo. Dealing with chemo is much easier to manage, mentally. I can plan, prepare, make decisions, overall maintain control. I know that Monday morning before work I'll be going to the doctor for a blood test. Tuesday morning before work I will be going to see the oncologist. Wednesday I go for the chemo. I know to eat a big breakfast this time, and drink plenty before I go in to try and avoid a repeat of the passing out incident. I know which friend is kindly accompanying me and making sure I get back to my bed safe and sound. Etc etc. It's all organised. So, while I can't say I'm looking forward to it, I don't feel too stressed or upset about going back for chemo. It's just what I've got to do next week.

But there are regular reminders that I am not in control at all. The unexpected nosebleed freaked me out. The hair coming out is a big one. Made more traumatic by it not going all at once (in one big shock move that I can then deal with and move on from) and not a general gradual thinning that I barely notice, but occasional decisions by specific patches of my hair to completely give up the fight and abandon me, leaving me constantly wondering whether that's it now or if there's more to go. One (luckily very small) area of my gum receeded a bit. It can be a side effect of chemo. I asked my dentist about it. Apparently if that's it, it's fine. But if it starts happening much more by that tooth, or starts happening to loads of teeth then they will be concerned. But what can anyone do? I have to have the chemo. Will my gums be ok or won't they? I don't know. There's nothing I can do but wait and see.

These things are all stressful, but I know full well they are just the icing on the cancer cake. Forget what the doctors said. What if the treatment doesn't work, the cancer spreads, and I die? I don't think about it much - because it is so far out of my control, what's the point - but of course, it's there in the background. I'm at the mercy of my doctors, the treatments available, and my stupid human body. So yes, I am upset about the cancer.

My usual way of handling things is to be in control. And now here I am in a situation where there is a huge amount outside of my control - and there is nothing I can do about it. I realise that the way I have been coping is by taking control of anything that I could, in particular my attitude. As I've said before, being positive is a concious choice. I could easily cut myself off from everyone, feel sorry for myself, assume the worst. But I had a choice, and I made a decision not to. How I respond to this is one of few things at the moment that I have control over.

I've discussed it with other people in the same position and we are agreed. It's up to the person with cancer to deal with it how they want to and how they are able to, and to tell other people how it is. It's up to everyone else to support them in that. So if there are days when I need to hide under the duvet feeling ill then I will. But the rest of the time, if I want to go on as normal (or as close to that as possible), then I should, I can, and I will.


Realisation number 2: I was angry

A particularly clever person surprised me by saying they thought there was anger in amongst what I was feeling. I know I rant and swear a fair amount but I don't normally think of myself as an angry person. Having spent a few days being overwhelmed by feeling hurt, stupid and sad I realised in that instant that yeah.... there was a truckload of anger in there. I was PISSED OFF! For obvious reasons.

I have found writing this blog to be very cathartic (to the extent that it definitely outweighs any fears/embarrassment associated with everyone who knows me getting full disclosure on what's going on inside my mind all the time now) but it turns out that getting really pissed off and angry once in a while is also very good for one's mental health.

So dudes, while positivity is my go-to approach to all this, obviously it doesn't work 100% of the time, therefore next time I am being annoying, over-sensitive and whingy, perhaps actually invite me to have a massive rant about everything that makes me mad. It might be about cancer, or it might be about the number 31a bus. Who knows. But sometimes it will be the case that I am woman (with cancer) and I just need someone to HEAR ME FUCKING ROAR.

Having said that, right now I'm actually back to a good mood and soon off to have a nice time and a few beers with my friends :-)

TTFN xx

Battle Born

(Back to the family history thing. As a reminder, or in case this is the first of my posts that you've read: My mom had inflammatory breast cancer at 47, her mom had breast cancer at 59, her mom had ovarian cancer in her 50s. I now have breast cancer at 33. We are the only 4 women in that line of my family. So before diagnosis, I was classed as being at high risk of hereditary breast and ovarian cancer. Quite right.)

You know when you sing along to songs by The Killers at the top of your voice, wondering all the while what the hell Brandon Flowers is actually going on about? I've done that plenty of times.

I've not listened to The Killers in ages. Just put Battle Born on. Argghhhhhh! Flesh and Bone! That song! Fuck knows what Brandon "Breaker of Hearts" Flowers was really going on about, but I remember listening to it on a train (singing along at the top of my voice... silently to myself in my head) and it hitting me like a ton of shit that it was MY song. I think all but the first couple of lines chime with me. Big time.  

I've gone through life white knuckling the moments that left me behind.
Refusing to heed the yield I penetrate the force fields in the blind.
They say I'll adjust, God knows I must, but I'm not sure how.

This natural selection picked me out to be a dark horse running in a fantasy.

Flesh and bone. And I'm running out of time. Flesh and bone.

 

Somewhere outside that finish line I square up and break through the chains.
I head like a raging bull anointed by the blood I take the reins.
Cut from the cloth of a flag that bears the name, Battle Born.
They'll call me the contender, now listen for the bell, with my face flashing crimson from the fires of hell.

What are you afraid of? And what are you made of? Flesh and bone,
And I'm running out of time. Flesh and bone.
And what are you made of?  Flesh and bone.
Man I'm turning on a dime. Flesh and bone.

This could decay like the valley below, defences are down.
The stakes are high, the fairy tale end, the staggering blow.
You led with your chin, this could be real simple.

 

And what are you made of? Flesh and bone.
And I'm running out of time. Flesh and bone.
What are you made of?

 

Faces forward and trade in this blindness for the glow of love.
And time is raging, may it rage in vain.
As you always had it, but you never knew.
So boots and saddles, get on your feet, there's no surrender 'cause there's no retreat.

The bells are sounding, in this monster land, we're the descendants of giant [wo]men.
 

Not sure if anyone reading this will get it. I might be being a bit weird and obscure. But in a nutshell I am cut from the cloth of a flag that bears the name Battle Born. Boots and saddle, I'm on my feet. Or something.

 

Hair today....gone tomorrow?

My hair has been playing mind games with me this week. I was holding out some hope at first that it wouldn't desert me... after staying up til nearly 3am Tuesday morning pulling at my hair and establishing that other than in front of the ears, the rest of it was firmly attached. "It's ok! These chunks by my ears can go! You can't even tell. Must have been where the cold cap didn't fit tightly to the head. The fact that the rest of it is ok means the cold cap maybe mostly worked this time!"

Then came the exodus at the top of my head. Another couple of hours spent pulling chunks out. I was going to put a photo of that here, but I have totally chickened out. It makes me too upset. I did however accidentally get my sad face in this one when I was trying to take a photo of the side of my head.

This is how I feel right now:

 

I tried to convince myself that maybe that would be the end of it, as once again, the rest of my head seemed to be keeping a tight grip on the hair. But all hope is going this evening as the hair by my neck has decided it can't be arsed any more and is just going to fuck off too.

 

Well, it can fuck off. Fuck it, I can't be bothered with the stress of it any more. So I've taken a night / early hours off pulling my hair out, and instead I've been arsing around with the wig.

 

My mood has improved although only slightly. I don't mean to sound ungrateful. Because I truly am very grateful to the, I'm guessing 35-40 women who donated their entire heads of hair to create the biggest, thickest mop on the face of the earth. I'm just not used to it.

 

 

There's so much of it!  I feel silly. It makes me cringe.

 

 

The photo above doesn't do the bouffant justice. Trust me, it's TOO BIG. I can't go out in it!

 

Having said that, some experimentation tonight has convinced me 100% that headscarves are not my thing. This is the first and last time you'll see me in one:

 

 

So for now I am just going to hide in my bed, with my B for Badass Bitch hat on, singing "Unchosen one*" at my hair until I figure out what to do.

 

 

 

*  "Give up, giiiiiive up; I wriiite it like a mantra. There's been enough, eeeeenough, hopelessness and banter. I'm not alive to whi-ine, it's an honourrrr juuust to be here, it's an honourrrrr just to beeee here, be here alive"

 



Side effects and cocktails

So I've had one blast of chemo, and having been prepared for the worst, 15 days later and now officially in to week 3 (the week where my oncologist said I can do whatever the hell I want) and the complete list of side effects experienced is as follows:

6 hours of vomiting on day 1. Followed by...
4 days feeling kinda tired.
1 sore arm for a few days around days 7-10.
2 patches of gums feeling rough for a few days.
1 minor nosebleed day 13.
Some time spent this week (literally) pulling my hair out. Although... you can't tell yet.
There were a few days where my hands were a bit dry so I put hand cream on and errrr...

I'm now scraping the barrel. That's really it.

I hope I'm not tempting fate here. But the nurses told me that I would be fine because I am fit, healthy and am going in to this with the right attitude, and they're convinced that makes all the difference. Maybe they were right....

I ran just over 5k yesterday as part of gearing up for a 5k race on the 20th. Took it slowly but it was fine. I'm back at work and am being treated like royalty by my amazing colleagues (I would like to give a particular shout out to Marie here for the cake... and I'm sticking my tongue out at Gary as I do so ha ha ha). I'm being invited for more coffees, drinks, BBQs, meals out than I can keep up with. Who knew having cancer would make you so popular?! Either that or my friends are all still expecting the worst - if so you can STOP!