Saturday, 27 September 2014

I realised what's been missing in my life

Oh heck. I started writing this yesterday, when I was feeling absolutely exhausted but otherwise good. 24 hours later and I've got a stinking cold. My throat is on fire and I'm all bunged up. Waaaaaaaaaah! I'm not even allowed any vitamin C drink (which I always neck loads of when I have a cold - I'm convinced it works) because of the sodding chemo. Waaaaaaaaaah! So all I'm armed with to beat this cold immediately (there are 3 more days before chemo #3 and I have plans for all of them) is some paracetamol and my stubborn determination.

This doesn't really change anything I wanted to say in this post, it just makes me even more sure of what's been missing in my life and that I need to make a very important change.

So, once again it's a Week Three. All hail Week Three, week of freedom to do anything! I  actually think everyone should celebrate Week Three, whether you're having chemo or not. It's much fun!

This Week Three technically began on Wednesday, although, as I love Week Three so much I actually started celebrating it three days in to Week Two. Yeah, yeah, I know, I know. Week Two is the one where your immune system is all pathetic and if you're sensible you keep away from people and places where you might pick up germs and end up with something like a cold. Ahem. But I was not going to miss running in the Big Fun Run or seeing very important friends.

Anyway! Wednesday evening I went to a work party. I have to say, I was shitting bricks beforehand because I'd decided to turn up with the wig on. I think only four close friends had seen me wearing it in real life up until this point so turning up (late) to a party that so many of my work colleagues and friends were at was pretty daunting. But the ongoing anxiety about losing my hair has been making me lose my mind so I'd decided it was about time I just got over it and made myself wear the wig out so that if/when I do lose all my hair, I'll feel ready for it. I knew this already, but it was 100% reinforced on Wednesday night - the people I work with are ace. I arrived feeling self conscious and stupid, and went home feeling relaxed and happy - and not just because I was a bit tipsy (thank you millions you lot xx).

Friday I went to Leeds for a Breast Cancer Care Younger Women Together event which took place over Friday and Saturday (today). It was two full days of group workshops, presentations and opportunities to talk to other young women with breast cancer and a range of experts on all sorts, including nutrition and diet, exercise and relaxation. There was a lot to take in, and I need some time to process it all so I will write about the content of it properly another time. But I wanted to say here that it has been incredibly informative, and inspiring. I am so grateful to Breast Cancer Care for organising it (we were put up in a hotel, fed well, and looked after by lovely staff and volunteers) The support Breast Cancer Care provide is invaluable.

Anyway, it was in my hotel room in Leeds yesterday afternoon that I realised my tiredness has reached a point that needs addressing. Deee-lite came on the radio. Obviously I turned the volume right up, but I simply didn't have the energy to get up and dance around the room. That's just not right! And it's just not me. Groove is definitely always in my heart, but there was no energy left in my body.

Excuse the dodgy mirror selfie but look at the bags under my eyes! Don't even need to zoom in to see them haha!

It was at this point that I realised what was missing from my life. Afternoon naps.

They got me through my earliest years, they got me through university. And now, starting tomorrow, I am going to reintroduce them in my life to help me get through chemotherapy.

Snoopy sums it up well:

So that's what I'm going to do :-)

Sunday, 21 September 2014

What chemo is and what it's doing to me

First of all, how does chemotherapy work?

For anyone who doesn't know how chemotherapy works (I didn't really, up until recently) here's a summary. I've taken information from the Cancer Research UK website.

Your body is made up of billions of individual cells. Body tissues grow by increasing the number of cells that make them up. The cells reproduce themselves exactly. One cell doubles by dividing into two. Two cells become four and so on.

This happens very fast between conception and adulthood. But once we are grown up, most cells only reproduce in order to replace others that have died, for example through injury or illness. Some cells carry on reproducing. These include hair cells, cells in the gut and cells that make blood in the bone marrow.

Chemotherapy kills cells that are in the process of splitting into 2 new cells. Chemotherapy drugs circulate all round the body in the bloodstream. They can reach cancer cells almost anywhere in the body. Because cancer cells divide much more often than most normal cells, they are more likely to be killed by chemotherapy.

Some chemotherapy drugs kill dividing cells by damaging the part of the cell's control centre that makes it divide. Other drugs interrupt chemical processes involved in cell division. You may have a combination of different chemotherapy drugs. The combination will include chemotherapy drugs that damage cells at different stages in the process of cell division. So, with more than one type of drug, there is more chance of killing more cells. (I'm having two types of chemo - the first 3 or 4 blasts are a combination of 3 drugs (FEC), then I'll be having 3 or 4 blasts of a different drug (Taxotere).)

Chemotherapy causes side effects because it affects healthy body tissues where the cells are constantly growing and dividing. The skin, bone marrow, hair follicles and lining of the digestive system are examples of cells that are constantly growing and dividing. But, unlike cancer cells, normal cells can replace or repair the healthy cells that are damaged by chemotherapy. So the damage to healthy cells doesn't usually last. Most side effects disappear once your treatment is over, and some only happen during the days while you are actually having the drugs, for example, sickness.

What's the chemo been doing to me (so far)?

Today is Day 12 of my second cycle of FEC (and 33 days after my first blast of FEC).

Last Monday night, 5 days after Chemo #2 I indulged myself in a big moan about not feeling well and not feeling happy. My friends were quick to respond with bucket loads of kindness and sympathy. Some asked more about what it's like being ill from chemo - then I felt like a bit of a drama queen for moaning, because ultimately, I felt less ill than I do when I've got a cold. It's a weird kind of ill and the first time I've experienced anything like it. Aside from the sore scalp/follicles "complaining", I think this is a full list of the side effects I was experiencing at the time of my moan:
  • I had swollen glands.
  • I was aware my heart was beating. It wasn't pounding, it wasn't fluttering, it wasn't beating irregularly, it wasn't painful. I was just constantly aware that my heart was beating, when I'm not normally.
  • I was aware my lungs were breathing. It wasn't painful, it wasn't laboured, I wasn't breathless. I was just constantly aware that I was breathing, when I'm not normally.
  • I was aware of my whole body, because it was sore. I was trying to work out whether it was skin or muscle, but I've come to the conclusion it was my veins (your veins do suffer from transporting the poison that is chemo around your body).
The doctors advise you to listen to what your body is telling you. I felt like mine was telling me it was using all the energy it had to mend what the chemo had damaged, and to stay in bed and just let it get on with that. So I did. And after a few days, I felt better.

To date, I think I've been pretty lucky when it comes to chemo side effects. Through the YBCN (Younger Breast Cancer Network) I've made friends with and got to know a lot of women roughly my age who are going through chemo at the same time as me. I hear about the side effects they are dealing with and have been waiting for them all to hit me but so far I seem be one of those that is getting off lightly. In addition to what I mentioned above, I think this is my complete list of side effects to date:
  • Some tiredness in the week after each chemo. There's also times I've felt a bit spaced out in the days after chemo but I think that's actually a side effect of the steroids, rather than the chemo itself.
  • My hair has thinned a lot, and I am developing an attractive old man bald patch on top of my head. (My early nightmares were of me turning in to George Dawes or Gollum. I now know Friar Tuck is more likely.) It doesn't feel like it, but 33 days in to chemo, this is actually a bit of a cold cap success story. I'll soon be at the point where you'll definitely only see me in public with the wig on, but there's a good chance a load of my own hair will still be tucked away under there. Because if it stays as it is (too thinned out for me to be happy with it, but still plenty of hair there) then I am going to stick it out and not shave my head. It would mean as soon as chemo is done and hair starts growing again I will be able to get back to "normal" much more quickly. Filling out patchy bits enough for them to not be noticeable is much quicker than growing an entire new head of hair that's long enough to do anything with from scratch. Anyway, we'll see what happens (there's still plenty of time for another mass shedding leaving me with no option other than to go skinhead).
  • After both chemos I have had some patches of rough gums for a few days. But they haven't been sore or anything. I just noticed they were a bit rough. Like after you've burned the roof of your mouth on pizza (without the pain).
  • The gum above one tooth receded a bit after chemo #1 but so far doesn't seem to have gotten any worse.
  • There was the extreme vomiting the night of chemo #1 but a different anti-sickness drug given to me for chemo #2 stopped that happening again. I just felt a but sick later on that night (so I went to bed, slept, and was fine the next day).
  • I had one very minor nosebleed after chemo #1.
  • One of the veins in my left arm is hard and sore. You can see it sticking up through my skin. Sore, hard veins in your hand/arm seems to affect everyone that has chemo. It's no wonder - the entire dose of chemo goes through them before spreading out to the rest of the body. But, while it's sore at the moment, I can't say it's a massive issue or intolerable.
  • I'm absolutely going to blame any times where I have been an overreacting stresshead on the chemo too.
I think that's it. The massive bag of lotions, potions, and pills I bought in Boots remains intact. My card for free prescriptions remains unused.

I am hoping I'm now all set to be well until chemo #3 in ten days time (as long as I don't pick up any coughs or colds from anyone in that time). Fingers crossed!

Monday, 15 September 2014

Running on empty

The Breast Care Nurse who explained chemotherapy to me shortly after I was diagnosed did warn me that at this point in the chemo cycle (when I've no more pills to pop and I come down from the steroid high) I would be a misery guts for a few days. It didn't actually happen at this point during chemo #1 but it sure as hell is happening right on schedule now. I hope that means it goes away right on schedule too (when is that? I don't remember, let's hope tomorrow) but for now, I really just need a moan, I'm sorry.

Oh peeps, I feel bluuuuuuuue :-(

I hate cancer. I hate chemotherapy. It takes so much from you. And it hurts.

The vein in my left arm where I had the first chemo has started hurting again. It's hard, and it is sticking out of my arm. I could almost strum it like a guitar string.  Why has it done that? I thought it was better - it had been fine for the last week or two. Not any more.

The whole of my body is sore and I can't tell if it's my skin or my muscles. I keep checking myself to see if I have come out in bruises, that's how it feels. But no bruises. I hate that - when you're bruised, and you know you're bruised, but you don't have the visible bruise to prove it to everyone else. You'll have to take my word for it, I'm bruised all over.

I've got swollen glands and they hurt too. Apparently this is a sign that my body is trying to fight the damage the chemo has done. Good body. But I think it's having to fight pretty hard, and it's struggling today.

The top of my head hurts a lot ("that's your follicles complaining") and the whole hair-falling-out thing is mental torture. At what point do I give up? At what point would you give up? Because the hair loss isn't an event. It's a process, and one where you never quite know what's going on or what's going to happen next. At the moment, I have the dilemma of a parting that has widened to the point of "bald patch" on top of my head, with the rest of my hair having thinned out but still being actually ok. Currently suggests the cold cap kind of worked apart from missing a bit on top. If that's the case, do I soldier on with what is essentially a combover (currently do-able in terms of hiding the offending patch) and be patient for the bit I lost to grow back. Or is it just going to keep getting worse anyway in which case I may as well shave my head now? Completely bald, or hopefully hideable bald-patch? I can't make that call today because I don't know what's going to happen tomorrow. I'm stuck.

I feel lonely, and I miss people. I know I need to rest, and I'm not stupid enough to ignore all the signs my body is giving me that that's what I need. I'm also about to go in to the "you're immune system is at it's lowest and if you so much as look at anyone who sneezes you'll end up in hospital" phase of the cycle. So I am behaving myself and staying cooped up indoors and resting. But I'm not happy about it. I'm lonely. I want to be out there, like you. I want your freedom.

And on top of this, it's been one of those days where I remember it's cancer, and I am really worried that I'm going to die. I don't want to die. I don't want to have cancer and I don't want to die. I know this is a pointless and unhelpful question but it's one that's been going round in my head today: What the fuck did I do to deserve this?


Saturday, 13 September 2014

Why can't The Sun newspaper raise awareness of breast cancer without Page 3 and topless models?

A bit of background

A few weeks ago I wrote an open letter to The Sun newspaper explaining why their Page 3 vs Breast Cancer: Check 'em Tuesday campaign upset me. You can read it here if you want. That blog post has had over 9,000 hits, and led to follow up articles on The Debrief, Buzzfeed and The Stir. I was blown away by the response, it was completely unexpected. But it was clear that I was far from alone in feeling the way I did, and on that day (the day before my first chemotherapy blast) the No More Page 3 campaign got over 1,000 more signatures on their petition. It was amazing! It felt like writing that blog post was a really positive thing to have done. A little something good to come out of my own breast cancer diagnosis.

Then this:

3 weeks later, just after my second blast of chemotherapy, I see this pop up in my Twitter feed.
I followed the link and this is what I read:
"Some of you yesterday forwarded an email you received from The Sun, or via other means, that had rendered you sad/angry/gobsmacked. This is the email...

'I'm looking for women who are happy to pose tastefully topless and speak about how often they check their breasts for lumps and bumps. The shoot will be taking place in London on Saturday, all expenses paid. Ideally they will be young-ish and are happy to be interviewed about their breast checking habits (ideally looking for women who check their breasts regularly or have just started doing so). They may have had breast cancer in the past or have relatives who have, or they could be BRCA positive. They may also be perfectly healthy.
With you, can you please email me asap with
Name of nearest station:
Dress size:
Shoe size:
Bra size:
Email address:
Mob number they'll have with them on the day:
Along with a little head shot (not for publication, just for reference).
And do pass this on to any other contacts of yours.
Dylan Sharpe, Head of PR at The Sun newspaper responded to the No More Page 3 tweet above with:
Yes, Dylan, there is a problem.
Dylan's response left me speechless. But only temporarily. I have so many questions I would like him to answer about Check 'em Tuesday and about The Sun's approach to raising breast cancer awareness. I have put a few of my key questions below, and given my own answers, as I doubt I'll be getting a reply from Dylan. But obviously if Dylan does want to take the time to send me his own responses in writing, I'll be very keen to read and share.
1. What specifically is being gained in terms of raising breast cancer awareness by using topless models?
With regard to raising breast cancer awareness, nothing is gained by using topless models. Simple as that.
Breast Cancer Care don't need to use images of topless models to raise breast cancer awareness. Instead they provide the information women need to know to check their breasts and be aware of potential signs and what to do about them. The same applies to Cancer Research UK, Breast Cancer Campaign, Macmillan and the NHS (to name just a few). 
2. Is it appropriate to use sexualised images of women (as in Page 3 vs Breast Cancer - Check 'em Tuesday) as part of a campaign to raise breast cancer awareness?
No, it is not appropriate to use sexualised images of women as part of a campaign to raise breast cancer awareness. I am speaking here from first hand experience, as a 33 year old woman with breast cancer. Breast cancer awareness has nothing to do with sex, with being sexy, wanting to be sexy, being perceived as being sexy, having your boobs leered at by others etc. Breast cancer is a terrifying, life-threatening illness - which if caught early, can be very treatable. What women need is accessible information and guidance about how to check their breasts, what they should be looking out for, and what to do if they notice anything that  might be of concern. Sexualised images of topless women are inappropriate  (and completely pointless) in this context.
3. Was it appropriate to circulate that "journalistic call out" asking ideally "young-ish" women to "pose tastefully topless" for The Sun?
Nope. See answers to questions 1 and 2 above. And by the way, what is "young-ish" and why have you not asked for people's age and date of birth to ensure you are not following up on responses from girls who are under the age of 18?
4. How much thought has been put in to the content of the information that will accompany these "tastefully topless" images of ideally "young-ish women" to raise breast cancer awareness?
Judging by the call out, we could assume not a lot. Seems you're after any "young-ish" women that are prepared to pose "tastefully topless" - doesn't seem to really matter whether they are breast aware or not, have a family history or not, have had breast cancer previously or not, are perfectly healthy or not (!), have a BRCA mutation or not. As long as they are willing to pose topless and talk about whether or not they check for "lumps and bumps" - that's all that matters.

You do know there's more to raising awareness of breast cancer than discussion about checking for "lumps and bumps" right? You know there are other important signs that could present in the absence of any noticeable lumps or bumps, such as nipple changesOf course you do. The reality is that the respondents' knowledge and experiences of breast awareness and breast cancer are going to be much less relevant to your selection process than their head shot and bra size . It's obvious you just want some "real women" to pose topless for you in your increasingly desperate attempt to justify the existence of Page 3. See next question.
5. Exactly why won't The Sun try and raise breast cancer awareness without the use of topless models (Page 3 models or members of the general public)?
Because this is not about raising breast cancer awareness. This is about using breast cancer as a gimmick to try to justify the existence of Page 3. I'm sure I'm not the only one to be stunned by how low The Sun will go with this, so as with my original open letter to The Sun, I am going to end here by encouraging anyone who reads this who hasn't already to please sign the No More Page 3 petition, and share it with others. You'll be adding your name to over 200,000 others saying enough is enough.

PS. To any men reading this, take a few minutes to visit Breakthrough Breast Cancer and learn about the signs and symptoms of breast cancer in men. Breast cancer is much, much less common in men than in women, but does affect around 500 men in the UK every year. 

Friday, 12 September 2014

My second FECking chemo

The run up to my second blast of chemo, and the immediate chemo aftermath have been an improvement on the first. Hurrah! I didn't have the same levels of anxiety about chemo in the week leading up to it this time. I knew roughly what to expect, and my side effects had not been too bad after the first night, meaning I've not been toooo worried. Plus my oncologist had told me I could do whatever I wanted during the third week of the cycle so I made the most of it, and kept very busy.

Preparing for chemo #2

Friday night I went out and got drunk on Pina Coladas with some of my friends from work. I even got conned in to having a tequila when the "You only live once" line was thrown at me. I'm easily led. I was prevented from pulling my hair out in front of people, but my chemo side effects were used as an attempted alternative explanation to the red marks someone got all over the table ("That's not nail varnish, her over there on chemo had a nosebleed." !!!)

Saturday afternoon I was back to the pub to meet up with some local women who are also in the Younger Breast Cancer Network (YBCN). I had such a lovely afternoon, it is so inspirational to spend time with such amazing, strong, positive women. And I discovered that there is more to "drawing on eyebrows" than getting an eyeliner and literally drawing them on, which is what I was imagining, and dreading. No, there's a whole world of building eyebrows out of magic stuff, which stands up to very close inspection (I did peer at some from a distance of about 3cm and was completely blown away by how real they looked).

Sunday afternoon, for a change, was spent in a pub garden, with one of my loveliest friends and her gorgeous baby. We established that we are having some similar experiences going through chemo and having a young baby -  we are both not getting enough sleep, both have hormones all over the place, both spending too much time discussing bodily fluids, but both making ace new friends as a result.

Monday morning I went in to work, and then I took the afternoon as annual leave to meet up with Rebecca where we spent a good 7 hours over a few glasses of well-earned wine discussing... everything. And I won't be expanding on that here.

Tuesday morning before work I went to oncology where I was told that all was well. Had a day in the office, and then went out with my friend Amy for my last supper before chemo #2. When booking the table for dinner, Amy had told them I was celebrating finishing round 1 of chemo and ..... they brought us a bottle of Prosecco on the house! Seeing as Amy was driving, and my oncologist had told me I could do whatever I wanted during week three I did drink most of it! You only live once right?!

Chemo day

It is the worst day. There's no denying that. The thing I was most anxious about was passing out again (having nearly fainted again at the doctor's on Monday when the nurse struggled to get blood out of my chemo hardened vein. OUCH.) This time though, I didn't pass out. Well done me! And they gave me the real anti sickness meds this time. Well done them!

But oh my days. There's nothing like watching tubes of poison being injected in to you for an hour, while wearing a head freezer, which, put on extra tight this time, makes you want to rip your own head off. My first cold cap experience was fine - this one was not. I need to say a massive thank you to Emily here, who sat in a miserable hospital for about 4 hours, listening to me whinge and whine about the fucking cold cap. It was making me feel seriously ill, and I could not get out of that hospital and in to McDonalds quick enough (because as soon as it was off my head and we were out of the hospital I felt fine!).

The miracle anti sickness meds I was given this time did their job. I ended up fast asleep in an armchair by about 8pm feeling sick, but I never was sick. Vast, vast improvement on the first chemo.

Post chemo #2 - so far

Chemo was Wednesday, it's now Friday so it's only been two days but I have mostly been fine. Slept a lot. Lazed around a lot. I've turned down a curry out with friends tonight not because I couldn't, cos I bloody well could! But because my 5k charity race is next weekend and I want to do my best to avoid getting ill - particularly from picking up other people's disgusting germs - between now and then).

Now I just hope that the next few weeks are as kind to me as the last few weeks were.(And perhaps kinder on the hair front.) And if I remain well enough, I'm about to get mad about Page 3 again. More to follow.

Oh and one last thing because I don't think I can ever say it enough, thank you to every single one of my friends. You're all amazing, I am so lucky to know you. Once this is done, I'm throwing you a massive party. XO

Thursday, 11 September 2014

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.

Tuesday, 9 September 2014

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 20th 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.

Sunday, 7 September 2014

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.

Friday, 5 September 2014

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 :-)


Thursday, 4 September 2014

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"

Wednesday, 3 September 2014

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!