Sunday, 29 March 2015

Everything I've learned about... Chemo and hair loss

I originally wrote this post in October - about halfway through chemo. It's now March, and I finished chemo almost 4 months ago. I thought it was about time I updated this because I have some important things to add and change!


If you want to know how to do cold capping right...

First of all, before I say anything else, if you want the most useful blog post about cold capping on chemo in the world, ever, then head on over to A Lil Earthquake's blog post Keeping my hair through chemo. Diane cold capped through 6 cycles of FEC. FEC is the chemo that REALLY has it in for your beautiful hair. Diane kept most of hers - she followed the rules, took amazing care of her scalp, and was rewarded with great results (unlike me who broke all the rules because I was convinced it wouldn't work, and so probably lost most of my hair due to my own tugging!)

This is Diane's hair after 6 cycles of FEC...

Amazing! Now go and read her blog!

As for me, despite losing most of my hair in the end after chemo, I learned some very important things along the way, and I want to share them here....

My personal perspective and experience

A couple of key things to know from the outset are:
  • I am someone who would have done literally anything to avoid shaving their head. I am full of admiration for the many young women facing chemo who are brave enough to take control and just shave their heads and be done with it. But it turned out, I am not one of those women. 
  • I've been completely honest in this post, and I'm writing as someone who found hair loss traumatic, so if you're reading this because you're starting chemo and are anxious about hair loss, be aware this post isn't intended to cheer you up no matter what - it's intended to tell you the truth, no sugar coating! Having said that, I hope that ultimately this might cheer you up - not because I'm going to throw loads of motivational, empowering quotes at you, but because of the info I will share that might actually be useful.
This was my hair right at the beginning of chemo. (3 days after my first chemo to be exact!)..

I had 6 cycles of chemo, FEC-T (3 FEC and 3 Tax). I used the cold cap each time. This is a summary of what happened to my hair.

Chemo #1
As the clock struck midnight between days 13 and 14, the hair started dropping out from around my ears. "This is it!" I thought to myself. The cold cap didn't work, and all my hair is all going to come out. I stayed awake til about 3 am, pulling at my hair. The hair by my ears came out very easily, the rest of it did not. Important note: I should not have been pulling at it!

Here's horrendous photo number 1! This is my (greasy) hair that night when it started falling out from by my ears. To me this was disaster.

Over the coming days, I lost more - on the top of my head my parting widened, and at the bottom of my hairline where it meets my neck a fair bit of hair was coming out. Each day, I kept tugging and pulling at it. Important note: I should not have been pulling at it!

Not so horrendous photo number 2. I was so devastated by this at the time I was too embarrassed to show anyone! This was taken at the end of the first cycle of chemo.

I look back at this now and see amazing hair with just a wide parting on the top.

Chemo #2
So to my surprise, the day of my second chemo arrived and apart from the hair by my ears and neckline, and the wide parting, I still had a full head of hair, and went ahead with using the cold cap for a second time.

I lost some more during the second cycle of chemo, but not so much - and with hindsight it was probably all my own fault for constantly tugging at it. The parting on top of my head continued to widen.

While I'd lost a fair bit of hair, I could still tie it back and cover the ever growing bald patch, so I kept on with the cold cap. By the end of chemo #3 this is where I was at...(it's wet hair, that's not grease!)

Chemo #4
This is a photo of me just after my fourth chemo. To me, my hair was noticeably thin, and I had to tie it back to cover the bald bit... but it was passable, just about. More about the bald patch later on in this post and how I disguised it!
Shortly after this photo was taken I had another big shedding of hair, meaning I could no longer go out without my wig on. However, I did still have a lot of hair left, so I continued using the cold cap for Chemo #5 and Chemo #6. During these two chemos, I lost a bit more of the hair I had round the sides and back, but the hair on the bald patch on top of my head actually started growing back again - another reason why I wanted to continue with the cold cap.

This was the top of my head at the point of Chemo #6.

Hair had been growing since I finished FEC.

Then this was the top of my head about 6 weeks after my last chemo.

And this is my hair at 3 months post chemo. I've not yet had a real haircut - I just chopped what was left of the long bits off myself.

My friends keep telling me to go to the hairdresser and get a pixie cut, and I do have enough hair for that now but I'm not going to, for two reasons. 1. I hate it, I hate me with short hair, and I hate the shape of my head and face. And 2. I have loads of greys and I am trying to be good now and not dye my hair til 6 months post chemo.

Oh and just for information, this is a picture of me in my wig last weekend. I have just had one wig the whole time - I got one as close to my normal hair as possible, and once I got used to wearing it, it's been fine.

So anyway, that's a quick summary of what happened to my hair from day 1 of chemo up til now, nearly 4 months on. What follows is a bunch of stuff I learned along the way (including how to cover a bald patch!)

"It's only hair" and other pointless things people say

If you're diagnosed with cancer and told you will need to have chemotherapy such as FEC-T, these are some of the facts of your situation:
  • You will need to do whatever it takes to get rid of the cancer.
  • You're very likely to temporarily lose your hair as a result of chemotherapy.
  • In the grand scheme of things, keeping your hair is not nearly as important as getting rid of the cancer.
However, unless you are in the tiny minority of young women who are genuinely happy to have a bald head anyway, then losing your hair is going to affect you mentally and emotionally - at least for a while. If you're used to having anything other than a shaved head, then losing your hair is going to be shit. Everyone knows this. But the nice, well intentioned people you know won't be able to stop themselves from coming out with all sorts of unhelpful platitudes about it.
  • It's only hair!
  • It'll grow back!
  • You'll rock the skinhead look!
  • You can have loads of fun with different wigs and hairstyles!
  • How exciting! Now you could go blonde!
  • Think of all the time you'll save not having to wash your hair!
You're not an idiot. Hair loss is your new reality and you know it. But that doesn't mean you're obliged to be HAPPY about it! It doesn't mean you will feel calm about losing your hair. It doesn't mean you have suddenly become someone who is confident and self assured about their appearance, or because you're facing the ultimate Big Deal that is cancer that you no longer care about silly, trivial things like what other people think about the way you look. No! You're likely to be upset, worried, anxious, pissed off. And justifiably so.

The reason I'm bringing this up is just to say that if you're losing your hair because of chemo, and you're upset about it, and you want to punch the next person who tells you it's only hair and it's a small price to pay for getting rid of cancer, you're not alone. It's the normal, natural response!

(To anyone reading this who is not having chemo themselves but knows someone who is and is wondering what the right thing to do or say is.... Unless you're about to shave your own hair and eyebrows and remove all eyelashes in solidarity then avoid all of the above platitudes. Simple statements like "This is awful, I'm bringing a bottle of wine round" are likely to be much more helpful.)

Will you definitely lose your hair?

There are lots of different chemo drugs - some cause hair loss, some don't. My experience is with FEC-T which is a common chemo treatment for young women with breast cancer so that's what I'm writing about in this post.

FEC causes hair loss and there's no avoiding it. If you don't use the cold cap, you will lose your hair. Some people find that a very small amount of their hair remains, but this will be maybe 5%, in patches. Many (most?) women decide to shave their heads and be done with it, and feel a great sense of control and relief having done so.

If you use the cold cap then there is a possibility that you will keep a lot of your hair - but it will still thin out. My oncologist told me that if using the cold cap, you have a 50% chance of keeping 50% of your hair. I know some women who have been more successful than this, and have only had minor, and completely unnoticeable thinning. I also know women who have used the cold cap and their hair has all fallen out anyway after their first chemo. I'm somewhere in between the two extremes. The thing is, if using the cold cap, you have to be prepared to just wait and see what happens - it might work, it might not. Hope for the best, prepare for the worst!

When does hair loss happen?

I hadn't really thought about it before starting chemo myself, but unless or until you shave your head, chemo hair loss is a process which takes place over a period of time, not a single event. You don't wake up one morning to find you are suddenly bald.

If you have FEC chemo, and do not use the cold cap, you can almost guarantee to have lost the majority of your hair by the time of your second dose. It happens to people at different times, but it's quite common for the significant shedding to kick in at around day 13-14 after your first blast. This is the point at which many women shave their heads - partly because they are sick of eating their own hair, and partly because your scalp gets very sore - shaving the hair off gives relief to that.

If you have FEC chemo and do use the cold cap, this hair loss still might happen. I know someone who used the cold cap, and during the third week after the initial chemo blast, her hair started coming out in chunks. She was devastated at first - like me she was desperate to keep her hair. But the decision was taken out of her hands, she shaved her head, and the hair loss anxiety was instantly gone. I'm mentioning this because the reality for most people is that the anxiety of losing hair before it happens is far, far worse than dealing with a bald head once you've got one.

My own experience was different. As mentioned above, I didn't have any hair loss until day 13-14 after my initial dose of FEC. I was about to go to bed that night, tucked my hair behind my ear - and a little chunk came out. Argh! This was it! I was sure of it. The moment I had been dreading. I instantly started pulling, and on both sides, the hair in front of/right next to my ears was coming out easily. I would take some between my fingers, and it would just come out. I spent the next couple of hours obsessively pulling my hair - I pulled out loads from next to my ears but the rest of the hair on my head was staying firmly put. I started to have some hope - maybe the cold cap had worked but it had just missed the bits by my ears. Maybe the rest of my hair would be ok! I was given further hope still by the realisation that the hair-by-my-ears hair loss was accompanied by an instantaneous full Brazilian. The hair that was firmly in place on my head was in the clear, wasn't it? Was it? Wasn't it?

Over the next few days, my hair played mind games with me. One day I started losing hair at the top of my head - my parting was widening. Then nothing happened for a day or so. Then the hair by my neck started to give up and fall out. I was constantly stressed, and constantly being told off by my friends for tugging at my hair. But it never got so bad that I shaved my head. I could still cover over any thin patches by tying my hair back. So when I went for my second chemo, I used the cold cap again. 13-14 days after that blast, I was expecting another mass shedding of hair - but it never came. It turns out this is normal, and a really important point:

When cold capping on FEC, the worst hair loss will be 2-3 weeks after your first dose. After that, you will likely have a continued, gradual thinning of hair. But the worst hair loss happens during the third week after your initial chemo. So if you are cold capping on FEC, and lose a lot of hair during this week, but not enough to feel you are ready to shave your head - then I'd say stick it out if you can! I am so glad I did.

When does hair start growing back?

A lot of women, especially those cold capping, find their hair starts growing back when they move off FEC and on to Tax. That's what happened with mine.

What is using the cold cap really like?

I personally tend to refer to it as The Head Freezer rather than Cold Cap. Head Freezer is a more accurate description of the experience! Here is another horrendous photo - this time it's me wearing the cold cap. This was on my last chemo!

There is a rubber hat that covers the whole of your hair, and is attached to a big machine by a pink tube that you can see on the left hand side of the photo. This rubber hat is pumped with cold, icy water, -4 degrees in temperature. Then the black cap thing is pulled over it, and strapped tight under your chin, giving you hamster face. It has to be tight though to work. If the rubber cold cap isn't tight to your scalp, it won't do its job. (The white bits are just some gauze that are there to protect the skin at the edge of my hairline from the cold cap.)

You wear it for different amounts of time, depending on the chemo you are having. On the dose of FEC I had, I had to wear it for 30 minutes before they started administering the drugs, during the administration of drugs (about 45 minutes), and for two hours afterwards. Tax, thankfully, is less! 30 minutes before, about an hour while the drugs are going in, and 45 minutes afterwards.

It's freezing cold. The first ten minutes or so are the worst. Each time, I didn't expect to get through those first ten minutes. But that initial pain does ease off. In fact, the first time, I found it easy after that and was asking them if I could have it colder! The second and third times were much harder, and by the end I was feeling sick with pain, and desperate to get the thing off my head. Both times I think I gave up about ten minutes before the end. Fourth time onwards I took the advice of other YBCN (Younger Breast Cancer Network UK) members and dosed up on ibuprofen and paracetemol before putting the freezer on. I think the combination of that, and the shorter amount of time I needed to keep it on really helped. It was ok.

Anyway, using the cold cap isn't a pleasant experience. But because of the amount of my hair it saved, I kept going with it, and I'm glad I did. It's been worth a few hours of misery every few weeks (hours where, lets face it, I'm miserable as hell anyway because I'm in a chemo suite at the hospital).

Practicalities of using the cold cap, and looking after your hair

Some practical things to be aware of if you're going to be cold capping...

You will need to take these things to the hospital with you: conditioner, a hairbrush/comb, a small spray bottle which can be filled with water and used to spray your hair to wet it. Choose a conditioner that isn't your favourite. Trust me - after a few sessions that conditioner will be firmly associated with chemo and the cold cap and you'll never want to smell it again. (The smell of my old conditioner now makes me feel sick.)

Before putting the cold cap on, the nurse will spray your hair with water to wet it, then put conditioner all over it. This is because the cold cap is rubber - when it comes to taking it off at the end, it comes off much more easily if you've got conditioner on your hair. (You don't want to freeze your head for hours only to have the rubber cold cap rip your hair out anyway!)

When cold capping throughout chemo you have to be extremely, extremely kind to your scalp. This means:
  • Only washing your hair once a week at most, in luke warm water.
  • No hairdryer, no straighteners.
  • No products other than a very, very gentle shampoo.
As you'll leave the hospital with a head covered in conditioner, the first thing you need to do when you get home is wash your hair. This should then be the last time you wash it for another week.

This horrified me! My hair was used to being washed, dried, and straightened every day! I was gutted - what's the point of keeping hair if it's greasy and you can't do anything with it?! Anyway, the first few washes were about 4-5 days apart rather than a week, but after then I did as I was told. And my hair quickly got used to not being washed. It would be ok for about 5 days before it started to look even the tiniest bit rank.

Looking after your scalp is really important. It's about giving your follicles every chance to recover from any chemo damage. It doesn't appear to be all or nothing, either the follicle is blasted by chemo or it isn't. There might be follicles that have had a hammering from chemo, but with care, can recover. So be as kind and gentle to your scalp as you can.


General advice is to use a gentle, unperfumed shampoo. But so many women in YBCN swear by the Lush shampoo bar called New which is supposed to encourage new hair growth. It's pink, and smells of cinnamon. It only costs a few quid and will last months and months and months. I used it for my once-weekly hair wash and I'm still using it now. Hair is growing!

Covering up bald patches - the magic that is Toppik

As you now know, I had a humungous bald patch on top of my head. I took photos of it at various stages to share with other YBCN members and compare notes. I was never, ever intending to share any of those photos on this blog initially but now I don't care. I want to show how even the most enormous bald patch can be dealt with! If it helps anyone else who is facing chemo hair loss, then I figured it's worth my own embarrassment.

They aren't actually great photos - they were just taken quickly for a discussion in the YBCN group, but you should still get the idea.

Here is the monstrosity that was the top of my head at some point during the 4th chemo cycle.

Fucking chemo! Fucking, bollocking, bastard cancer and bastard fucking chemo! Fuck!

But anyway! Turns out it wasn't the end of the world. I found out about a product called Toppik. I guess it was originally developed for men who are starting to bald and can't cope with it! But it works a treat for us chemo girls too!
Toppik is "hair building fibres". Translation: powder in a pot that you sprinkle on your head to hide a bald patch. I have it in dark brown. This is what the pot looks like and you can order online.

Take the lid off and you will see that there is a top designed for sprinkling, kind of like herbs.

And the powder itself looks like this:

Doesn't look particularly impressive! But when you sprinkle it on your bald patch, this is what happens (allow for me not making an effort to take a "good" photo or actually brush my hair and make it look neat):

And once my hair was tied back, this is how the top of my head looked:

So, you see? Even a bald patch the size of Wales can be hidden quite effectively! So the cold cap doesn't need to be 100% successful to be worthwhile (in my opinion).

One final thing...

One final thing - if you are going to have chemo and are stressed about hair loss and have any questions that haven't been answered here, you are very welcome to contact me either via this blog, or via Twitter @mulheron81. I know how stressful it is! And if you are under 45 years old with a breast cancer diagnosis and living in the UK, then I recommend you join the YBCN group on Facebook. The support is amazing - it'll get you through this! You can find the public page here. Send them a message and you'll get instructions about how to be added to and find the secret, private support group.

Saturday, 28 March 2015

This is a good life, Sarah

I've stolen the title for this post from my friend Kayla. "This is a good life, Kayla" is something one of Kayla's friends said to her the night before she had surgery a few weeks ago. (Read about it in her blog, Love Conquers All!) Kayla is one of my inspirations - she was diagnosed with breast cancer at age 24 in May 2013, and is one of the most positive and bright people I've had the fortune to get to know. I was chatting with Kayla on FaceTime a couple of days ago (she lives in California!) and it prompted me to write this post and record some of the things that have made me really happy over the last week or so.

Thursday night last week I went out for a meal with some of my friends from work. It was the night before my birthday, and they surprised me with a whole basket of lovely presents! There was a wine and chocolate theme to them - they know me so well!

Emily stayed over at mine that night, and the next morning (my birthday as well as, appropriately, the first day of spring, International Day of Happiness, and day of the solar eclipse) we got up and went outside. We decided to go out the front of my house where you couldn't see the sun itself but we thought that wouldn't matter, what with not being allowed to look directly at it anyway. We figured we'd just enjoy the eerie atmosphere as everything went dark and the birds started going bonkers. 

We waited...
 And waited...

...and apparently missed it because it never actually went that dark and the birds didn't do anything exciting. Bonnie was thoroughly disappointed...

But I didn't mind - it was still my birthday! I'd made it to 34!

Me and Emily headed off to Cosy Club for breakfast. So amazing we both took photos of it to show off to everyone else.

I had a lovely day, with cards, flowers, and friends turning up at my door! 

And then I spent that evening with my feeders friends, Lucy, Rachel, Becky, Glen, Dave, Dylan, Matt, baby Finn and Bonnie. We ate and ate and ate and ate.  Rachel made the most incredible birthday cheesecake ever, and Becky brought a key lime pie covered in nipples.

I was very lucky and spoiled and had another pile of presents to open!

I loved them all, but wanted to mention this print in particular. It's a quote that keeps being sent in my direction - another friend had even written it out in her birthday card to me! I love it.

I loved all the cards and messages I received - THANK YOU. I always keep cards, but this year's are extra special to me. 

Especially my personalised Chorizo Cat card from Jojo*!

(*Also known as "CANCER WOMAN")

On Saturday I went to Birmingham for a big Younger Breast Cancer Network meetup. I met loads of incredible women for the first time, as well as getting to spend time with those I've become close friends with over the last 6 months or so like Kate and Laura! I love these two. Kate was the first other young woman with breast cancer who I met after diagnosis. I hadn't yet started treatment and I was terrified. I was preparing to spend 18 weeks alternating between the bed and the sofa, with crusty sick dried on my face, unable to do anything for myself except rub coconut oil into my scalp. I met up for a drink with Kate who was just coming to the end of treatment, and who was so WELL! So well, so happy, so full of life, back at work, all smiles. That was the moment I decided I wouldn't be ill from chemo if I could help it, and that I'd live my life to the fullest possible whenever I could.  I met Laura not long after that. She'd just finished chemo and was as happy and well as Kate, reaffirming my determination to just get on with things and live my life.
Amazing women.

That Saturday in Birmingham was a lot of fun!

On Sunday I went out for lunch for another friend's birthday and came home in the afternoon and collapsed. I was exhausted! I slept and slept and looked forward to a quiet week, with lots of rest before radiotherapy begins on the 30th. It didn't turn out to be all that quiet though...

I was contacted by a company who are making a Save Our NHS film for 38 degrees. They wanted to include me in the documentary! This is the point I realise something really has changed in me since I was diagnosed with cancer. Last August when my open letter to The Sun about their use of topless models for breast cancer awareness went viral on the internet (I still can't believe that happened!), I was contacted by ITV. I said I couldn't do an interview because I was ill from chemo. The truth was I was just too scared to say anything in front of a camera. This week though I said yes right away without even thinking about it!

So on Wednesday, 3 lovely people with fancy equipment turned up at my house, hooked me up to a microphone, shone a spotlight at me, and asked me a bunch of stuff about being diagnosed with cancer, the treatment I've had on the NHS, and why I think saving the NHS is important. When I'd been rehearsing with Bonnie the night before, I was incredibly articulate and engaging, if I do say so myself. But on the day I waffled and got my words muddled up. I think though that I'm still going to appear in the documentary! Eek! BUT, the thing is, even if I waffled and look silly, I am just so pleased with myself for doing it. Most of us aren't brilliant at things the first time we do them but that doesn't mean you shouldn't try. Plus - it was a really fun day! Big thanks to Charlotte who spent a couple of hours acting in the role of "friend". We had to do cheesy things like walk up and down the street talking and smiling, and drink coffee talking and smiling. It was funny! And fun!

Then last night I went out for drinks and dinner after work with Charlotte and Beth - a fairly normal Friday night - except that Leicester was absolutely buzzing! We've got a big, bad King buried here now and there's been all sorts going on this week. Last night the city was lit up and there were fireworks. It was an amazing atmosphere!

 This is a good life, Sarah.

Right now, I'm feeling so happy. I have wonderful friends, wonderful people in my life. Right now, I can assume the best - that I'm cancer free. The radiotherapy which starts next week will help with that. I don't know what's in my future, but right now, just for a moment, I don't need to think about that. I can enjoy this moment of feeling happy. 

Tuesday, 24 March 2015

Angelina Jolie's ovaries and me

Two years ago Angelina Jolie told the world about her medical choice to have a preventive double mastectomy. She has a fault in her BRCA1 gene. Put simply, BRCA1 is one of the genes responsible for stopping cancerous tumours from growing in breast tissue. A fault in the gene means it doesn't do that job properly - this put Angelina at an 87% risk of developing breast cancer. Having the double mastectomy reduced this risk to 5%.

Angelina's faulty BRCA1 gene also put her at a 50% risk of developing ovarian cancer. Today she has shared with the world, in her article Diary of a Surgery, that she has now had her ovaries and fallopian tubes removed in order to reduce (almost entirely eliminate) this cancer risk.

What Angelina has written in Diary of a Surgery has shaken me up.

I have a faulty PALB2 gene. In the same way that Angelina's faulty BRCA1 gene put her at high risk of breast and ovarian cancer, my faulty PALB2 gene puts me at high risk of breast and ovarian cancer. Of course, I've now had breast cancer, so that risk has already become a reality! My medical team are doing all they can to reduce the risk of that same cancer coming back - that's why I've had 6 cycles of chemotherapy, a mastectomy, and (I'm about to start) 3 weeks of radiotherapy. As well as reducing the risk of the cancer I already had coming back, the mastectomy reduces the risk of a new cancer in that breast. I am having the other breast removed to further reduce my risk of a brand new breast cancer as soon as my body is healed from radiotherapy.

Having a double mastectomy was not a difficult decision for me to make. In all honesty, it's possibly the easiest and quickest decision I've ever made in my life. 

Simple as that. I don't want to die, and my breasts were going to kill me. Good riddance. (Besides, reconstructive surgery means they are still kind of there - albeit minus a nipple and with a couple of scars.)

The ovaries on the other hand have been a very different matter, for two reasons; one is about health, and one is about children. Having your ovaries removed puts you instantly in the menopause - this means amongst other things that you can't have children, and that you are at an increased risk of osteoporosis and heart disease.

I've done a lot of thinking about these three things and I've had a lot of arguments about these three things. These are my personal views:

Heart disease: I'm not too worried. While the family I had has been obliterated by breast and ovarian cancer, hearts have always been healthy. Big, strong, healthy hearts (it's all the love, man!) I don't smoke, I do exercise, I can look after my heart ok.

Osteoporosis: I am worried about this. There's less I can do to prevent it, and from what my doctors have told me, it's more of a risk. If I do live for a few more decades, I'll have to be really bloody careful not to trip over my own feet and continually walk in to things the way I do now (Twice in one day last week I walked in to a door - forehead and hip. Clumsy idiot!) The sooner I have my ovaries removed, the more the risk of osteoporosis later in life increases, so there's an argument here for holding on to them as long as possible.

Children: This is the trickiest one. Some of my medical team seem pretty obsessed with me keeping my ovaries so that I have the option to have children in a few years time. I disagree. I don't think I should have children. First of all, if I get pregnant and there are any of my original cancer cells left in my body, it will be asking for trouble in the same way that waving a blowtorch round in a petrol station is asking for trouble. Secondly, there would be a 50% chance of the child inheriting the faulty copy of the PALB2 gene and facing a high risk of cancer later in their life - particularly if I had a girl. If in a few years I am still alive and kicking, and I'm in a relationship, then I'd love to consider the possibility of adoption. But right now, I'm single and I'm still undergoing treatment for breast cancer and so I guess staying alive has been my immediate concern. But the combination of hassle from others about keeping my options open about having children, and my concern around risk of osteoporosis meant that when I was discussing my ovaries with my oncologist registrar a couple of weeks ago, I said I'd keep hold of them for now. Everyone tells me the chances are I won't get ovarian cancer in the next five years.

Then I read Angelina's Diary of a Surgery article today, and as I said, it's shaken me up.

"...two weeks ago I got a call from my doctor with blood-test results... “There are a number of inflammatory markers that are elevated, and taken together they could be a sign of early cancer.” I took a pause. “[the blood test] has a 50 to 75 percent chance of missing ovarian cancer at early stages,” he said. He wanted me to see the surgeon immediately to check my ovaries.
I went through what I imagine thousands of other women have felt. I told myself to stay calm, to be strong, and that I had no reason to think I wouldn’t live to see my children grow up and to meet my grandchildren. 
I called my husband in France, who was on a plane within hours. The beautiful thing about such moments in life is that there is so much clarity. You know what you live for and what matters. It is polarizing, and it is peaceful.
That same day I went to see the surgeon, who had treated my mother. I last saw her the day my mother passed away, and she teared up when she saw me: “You look just like her.” I broke down. But we smiled at each other and agreed we were there to deal with any problem, so “let’s get on with it.”

Nothing in the examination or ultrasound was concerning. I was relieved that if it was cancer, it was most likely in the early stages. If it was somewhere else in my body, I would know in five days. I passed those five days in a haze..."

Angelina goes on to describe how the PET scan was clear meaning that while early stage cancer was still possible, at least it wasn't a full-blown tumour. She then had surgery to remove her ovaries and fallopian tubes. During surgery a benign tumour was found, and luckily that was all.

Reading all this took me back to my own diagnosis, and to the emotions you get when you are waiting for test and scan results. When I say emotions... I mean fear. You know that you are high risk, and those test and scan results are going to mean the difference between living and dying.

I tell people all the time to listen to their gut feeling when it comes to their own bodies. I've been right about mine enough times. And Angelina's article today has prompted me to pull my head out of the sand I buried it in in order to get some peace from everything "cancer" and the opinions of everyone else about whether or not I should have my own children, and go back to the oncologist and demand my ovaries be chopped out as soon as possible. The left one in particular, I don't trust it. It's been a troublemaker in the past.

I don't want osteoporosis, but more than that I don't want to die from ovarian cancer.

I do want children, but I don't want to get pregnant and risk my life.

Like Angelina, I want my ovaries out.

Sunday, 22 March 2015

100 reasons why I'm thankful I was diagnosed with cancer - Part 5

I'm adding some more to my list today, prompted by this post, Be Strong, Yo! which my friend Diane has published today. And I quote:

Be thankful: Focus on the good. Cultivate a life filled with gratitude and be thankful for the experiences that life has given you each day. Train yourself to find blessing in everything because a grateful heart is a magnet for a positive life.

So here's a couple more to add to the list. This first one I wrote weeks and weeks ago! But it is still relevant...

14. Self-esteem boost!
(There's a soundtrack to this one. It's here, sorry about the short ad at the start, especially if you get the same ad that I did, which is Kanye West, sorry.)
I'll try to not let this escalate uncontrollably into narcissism but I've had a bit of a self-esteem boost recently and that feels nice! Especially as over the last six months there have been points where my self-esteem nosedived to almost non-existent. I've found it hard to word what I want to say here so I'll just put it bluntly. There are people in life who make you feel good about yourself, and there are people in life who make you feel like shit about yourself.  I'm sure that's true for everyone. The question is, who do you let affect and influence you the most? I've been told plenty of times, and I know it myself, I'm a people pleaser. I don't think that's a negative thing, until it gets to the point where you allow people to treat you badly, or you waste time and energy trying to please people who frankly aren't worth your time and energy because they just aren't nice. And that's where self-esteem comes in.
In the run up to surgery, and in the few weeks since surgery, I've been inundated with cards, messages, emails, and I've been really moved by some of the things people have said to me. (I have a long list of thank you cards to write and send!) It's meant a lot, it really has. And it made me realise, in keeping with YOLO and life is short/time is precious, when there are that many people in my life who are so nice and so thoughtful, and who care about me, why would I ever want to waste time and energy on people who aren't nice or don't care? I'll try not to any more.
Oh and in explanation of the song... My honorary sister Emily sent me a card when I got my post-surgery pathology results and one of the things she said was that she thinks of me every time she hears Katy Perry, Roar. In all honesty, I'm not a Katy Perry fan, but I do love that song and I'm definitely making Roar my personal anthem.
Update [even this update is old now, oops]: I drafted this a couple of weeks ago, then last week, Emily was at mine, cooking me dinner (good sister!) and I put this song on. She told me the line that really makes her think of me is "I went from zero, to my own hero." That really made me smile because it was what I was going to put as the heading for this but then I didn't because it felt too bigheaded!

15. I waved goodbye to dignity
Yyyyup! I'm adding it as something to be thankful for because dignity is over-rated, anyway. A breast cancer diagnosis makes saying goodbye to dignity inevitable. It starts with repeatedly getting the top half of your kit off to be examined and groped by one doctor or nurse after another. Ask any woman with breast cancer; it becomes that regular an occurrence that when you walk in to a room to meet someone for the first time, you automatically whip your top and bra off without being asked and without even thinking about it, whether you need to or not. But talking to strangers topless is just the beginning. Once chemo gets going there's no amount of putting your clothes back on that will restore your dignity. Chemo causes bleeding, leaking, sweating, fungal infections, crusty bits, sores. There are times you might be puking so violently it sprays back out the toilet nearly hitting the friend who is holding your hair back. There are times you're too tired to wash or get dressed for several days in a row. And then there's surgery, when you have to lie back and accept, amongst other things, one of the following scenarios... You'll either have a catheter in meaning someone will be rooting around down there to get the catheter in you, or you won't, meaning it's possible you'll wet yourself while you're unconscious in surgery. In my case I had a catheter in. I went down to surgery with knickers and gown on, and woke up with a catheter in and my knickers handed back to me in a little plastic bag.
But you know what... once you accept all this and say goodbye to dignity, medical appointments and procedures actually become a bit less stressful. Doctors and nurses really have seen it all before, and whatever you're going to present to them - they've almost certainly seen worse.
I've not seen one in a while, but remember those adverts about bowel cancer? The ones that tell you to put aside embarrassment and go and see your doctor if something isn't right at the arse end of business? Those adverts really do have a very important message and it doesn't just apply to your bum. You might be a lovely person, but you're living in a human body. Hiding behind all the effort you put in to look or feel nice (your clothes, hairstyle, makeup, and your washing and shaving and whatever else you do) there's a gross and un-lovely human body. We all have one and they're all gross, they're all disgusting. So don't EVER let embarrassment prevent or delay you from seeing a doctor if something isn't right. I know I won't.

In fact, I'm going to end here, and leave you with this:

Monday, 16 March 2015

Ed Miliband, this is my response to your email

Dear Ed Miliband

Thank you for your email yesterday. You said this was my chance to ask you anything I like.  
As it happens, I have a very important question.
What are you going to do for my friend Jojo and other young women like her who have secondary breast cancer and who are currently unable to access the drugs they need through the NHS?
This is Jojo.
We became friends last year when we met through the Younger Breast Cancer Network UK. Jojo was diagnosed with breast cancer in May, I was diagnosed in July. In January, when she thought she was coming to the end of her treatment, Jojo was diagnosed with secondary breast cancer - it has spread to her liver. She has been given a worst-case prognosis of 6 months to live. She is 31 years old.
Jojo's friends are now fundraising to try and get together the money needed for private treatment, and possibly treatment abroad. In just 2 days £3,525 has been raised, which sounds like a huge amount of money, but for private treatment or treatment abroad it is nowhere near enough.
It shouldn't have to come to this. There are many highly innovative drugs that are licensed and that are being developed but that are not accessible to breast cancer patients in the UK. The last 8 consecutive drugs licensed for treating secondary breast cancer have been rejected by NICE for funding on the NHS. Drugs routinely used across Europe are not available in the UK- it is no surprise that the UK has the lowest breast cancer survivor rates. (As an example, the drug Lapatinib is available in 18 other countries including Ireland.)
The problem is cost and the UK Government can help fix this problem by demanding a fair price from pharmaceutical companies and creating a system of access and approval that will ensure cancer patients get the drugs they need at prices the NHS can afford.
Ed Miliband - I want to know, if you were elected as Prime Minister, would you address this?
Without access to the best treatments, my friend Jojo is going to die. I am in tears as a type this, it hurts me to even write it, it's devastating, but it is a fact. If you were Prime Minister you would be in a position to do something about it. So will you? Please? I don't want to lose my friend.
Yours sincerely,
Sarah Perry

Sunday, 15 March 2015

Take a photo on Mother's Day

For me it's a day to look at photos.

This is the only picture I have of my nanny and my great grandmother together (with one of my nan's brothers).

I wish I could go back in time and meet them when this photo was taken. I wonder what they made of life, what they saw in their futures.

This is a photo of my mom as a baby, with my nanny and granddad.

It's one of only a few photos I have of my mom and nanny together. I would like to say in my nanny's defence that cameras and photos weren't so common back then, but there's plenty of photos of my mom and her brother growing up - my nanny just isn't in them. So I'm guessing that like my mom, she didn't really like having her picture taken.

Here's the only three photos I have with me, my mom, and my nanny all in the same picture.

I'm the baby in the middle of this one. My mom is in yellow on the far left, and my nan is on the far right.

And then these two are from one Christmas - I know we are all three together in the room although I'm hiding (by the lego on the floor) in one, and my nan is hiding behind my mom in the other.


This is one of my nanny holding me as a baby.

And this is one of my mom holding me as a baby.

These photos crack me up now. My hair is not all too dissimilar now... !

And I just had to share this one. My mom reading The Sun. Headline "Police probe whacko school."

I love it though because she is looking at me, and she looks happy.

Anyway, as she got older my mom point blank refused to have photos taken. So I have lots of her with me as a child, but very few when I was an adult. I think the most recent one was actually one from the London Dungeon (one of those where you pay an extortionate amount of money to have a photo of you mid-scream on a ride).

So, my Mother's Day message to you all is, if you have a mom, and you see her (whether it is today or not) then get some photos of you together. Doesn't matter if you hate having your photo taken, doesn't matter if she hates having her photo taken, doesn't matter if you are both pulling a face, or your hair is a mess, or you hate what you're wearing... None of that matters. Photos are precious. Take some, and keep taking them regularly.

And if you, like me, don't have a mom any more, for whatever reason, then I am sending lots of love for today. xox