Updated with a response from Philip Hensher: I'll look at my mobile phone as much as I want to, thanks very much!

I read this article a couple of days ago:

"Looking at your mobile? You’re cutting off a world of creativity – and flirtation " - (Philip Henscher)

An excerpt:

"It’s fair to say that, now that pretty well everyone owns a mobile phone, your engagement with the world can be judged by where your phone is while you’re eating dinner. The woman in the Mousehole restaurant had yielded to a heartfelt request, I would say, in placing it in her lap under the table. More usual will be those who place it on the table beside the plate; and now, there are those who eat with one hand, the other holding the iPhone 6, rapt, quite oblivious of the poor waiter trying to pour your water.
 
To me, it seems fairly staggeringly rude to behave like this when you’re in company, but nobody else seems to feel that way. The truth of the matter is that if present company were instantly removed, and replaced by the people who are currently receiving messages, the phones wouldn’t be put away. The messaging would probably continue, to another set of people. It isn’t about showing that you’d prefer to be talking to people who aren’t in the room. It’s about your preferred distance from the human race. Those who text at the dinner table would generally like their relations with humanity to be conducted at electronic speed, remotely."

Oh shut up! I'm sick of people telling other people how much they should or shouldn't look at their mobile phone, or what it means about them as a person, or their relationships with other people, or their engagement with the wider world if they look at their phone "too much" or at the "wrong" time. The woman in the Mousehole restaurant that Philip refers to was a complete stranger. He has no idea why she was on her phone. So why does he think he has the right to judge her behaviour as rude?

These are just some of the things I use my own mobile phone for:

• Phone calls and text messages
• Reading news articles (I never buy a newspaper anymore - I get the news on my phone, and it's not limited to what one newspaper has selected for printing on it's pages on a given day).
• Taking part in discussions in the Younger Breast Cancer Network UK forum.
• Reading and responding to emails.
• Scrolling through Twitter and Facebook.
• Taking photos.
• Shazaming.
• Making notes and reminders of important things that pop in to my head that I don't want to forget.

As I look at all the apps on my phone I realise this list goes on and on. I'll leave the list there because you get the idea and I want to give some further insight in to what I might be doing when you see me staring at my phone instead of meeting "a frank, flirtatious gaze with another one." (You see, according to Philip, instead of looking stupid for having her phone out, that woman in the restaurant could have been the "best company in the room" by continually looking upwards and outwards with curiosity, waiting for a creepy - sorry - flirtatious "gaze" to acknowledge).

If I am out in a restaurant with you and I'm looking at my phone I might be:

Responding to alerts on Facebook. I'm a member of an online forum called the Younger Breast Cancer Network UK. There are over 1,000 members and it is a very active group. It was the information, advice and support of that group that got me through diagnosis, chemo, surgery and now radiotherapy. I've posted countless questions myself, and wonderful women across the UK who have been looking at their mobile phones wherever they happen to be have responded to me. As I've ticked different treatments off my list, I've learned and experienced enough that I can now answer other people's questions. I see it as a kind of Pay it Forward. Women who were diagnosed before me helped me, and now I want to do the same for women who have been diagnosed after me.
Sometimes I get an alert on my phone because someone has tagged me in a post - either to ask me a question personally, or draw my attention to a question or concern someone else has that they know I can help with. If I am out, and an alert pops up on my phone because someone is having a stress because they've found out they are going to have a skin sparing mastectomy with immediate LD flap and expander implant reconstruction plus full node clearance, is it rude for me to take a moment out to respond and send a link right away to the massive blog post I wrote all about my exact same (and not particularly common) surgery? If I am out and an alert pops up on my phone because someone is worried that their chemo vein has come up red and inflamed, is it rude for me to take a moment out and respond with a photo of my own, explaining it looks like a thing called superficial thrombophlebitis and is an inflammation and nothing to panic about? In my opinion - no. There are times that taking a moment out to respond to something like this can be a huge help, or save a person a lot of worry. I've been there myself. Going through cancer treatment can be terrifying, and the support of that group is invaluable. Right now, I am a part of it - whether I am sat in the hospital, or lying on my sofa, or out for a meal with you. I'm not thinking about it all the time - and as I move on with my life, I am lucky to be able to think about it less and less. But if an alert pops up because someone out there has a question I can answer, then I'm going to answer it!

Responding to emails. I mostly ignore emails when I'm out but sometimes there's a reason why I will check and reply. Here are two examples:
At Christmas, myself and some of my other YBCN friends who were sans-eyebrows as a result of chemo started creating our own festive "Christmas Chemobrows". Lots of the YBCN group joined in and Jojo created a community Buzzfeed article with lots of photos. It was a bit of fun - especially for women who were cooped up at home, ill from chemo, missing out on most of the festivities. The community article immediately got picked up by Buzzfeed, then Good Housekeeping, then the Telegraph, ITV news, Metro, Daily Mail, Good Morning America, ABC News America and so on and so on! I was getting emails from journalists, asking interview questions. This was while I was staying with my friend's family for Christmas. I didn't want to be rude, but I had to reply to the emails - it was wonderful publicity for our (volunteer-run) support group and the Christmas theme meant it was a very time-limited window of opportunity. (My friend's family understood entirely, and were excited by it too!)
Another example: recently I set up a blog called the Young Women's Breast Cancer Blog. I wanted to create a space for other young women with breast cancer to share writing if they don't have a blog of their own - maybe if they've never done it before, or if they are worried about anonymity etc. Sometimes I get an email come through - either a question, or a blog post submitted. I know that putting yourself and your writing out there can be nerve-wracking - so I try and reply right away, to at least acknowledge receipt and give an idea of when I will be able to get back to them properly, or upload their blog post.

Reading something on Facebook or Twitter. Sometimes when you look on your phone for one reason (eg an alert) something else catches your eye. Don't get me wrong - a lot of everyone's Facebook and Twitter timelines are useless shite. But not everything is. Once when I was with friends I spotted something on Facebook. My friend Claire had added a blog post with the title "Goodbye my friends." Obviously I read it right away. It was Claire letting everyone know that her cancer had spread to her brain, and she had days left. I completely zoned out of the conversation that was going on around me (and got scolded for it - until I explained what I'd seen). I didn't mean to be rude. But I had spotted that post and there was no way I wasn't going to read it immediately.
People can be so haughty about this, but actually looking at Facebook or Twitter doesn't automatically mean you are wasting time or looking at something of no value. Another example I'll give is that recently, Ruby Tandoh (Great British Bake Off winner) came out on Twitter. As a result of scrolling through Twitter and seeing her tweet, other people had a boost of bravery, and came out themselves.

Sometimes, the support you need and the inspiration you need are online - and many of us access the online world through our phones. Many people are part of online communities - not because they are shunning the company around them, but because a particular circumstance (such as in my case, an illness) or a particular interest, brings them together with people who just aren't local.
A couple of weeks ago my online friend Kayla saw something I wrote about Angelina Jolie's surgery to remove her ovaries. Both myself and Kayla are making decisions about our own ovaries as we too are at high risk of ovarian cancer. Kayla saw my post - not sure whether it was via Twitter or Facebook - and she immediately messaged me. We then arranged a time to talk about it all on Facetime. Without a mobile phone this wouldn't have happened. Kayla lives in California, I live in Leicester.
I wonder if Philip ever considered that that woman in the restaurant might have been looking at her phone for a similar reason. Maybe she wasn't arsing about, or taking part in mindless gossip or similar, just because she didn't want to engage with the "real" world around her. Maybe she was responding to something (or somebody) important to her?

Also, a note on the claim that "looking upwards and outwards is the source of all art, thought and literature" and (about communicating with others on a mobile phone) "Of course, none of this is going to lead to art, or literature, or intelligent observation about our fellow human beings." I call bullshit on this too. In my opinion, it is what is within a person that is the source of their art, the source of their thought, the source of their literature. The outside world can prompt reflection and inspire some creativity - but so can thinking, so can reading, so can conversation (whether out loud, or in writing).

And you know what else? Your mobile phone can be a wonderful facilitator in the discovery of art. I'll leave you with two things.

First of all, a link to a song. My friend Laura sent me a message the other day. She was out with friends for the evening, and took a few minutes out to read my post "Burn the pages (start tempting fate)". She said a song came on as she was reading and it seemed to really fit, so she shazammed it. It was Lykke Li, "Dance, dance dance". I downloaded it myself, love it, and have, as a result found a new musical artist that I like. Thanks to mine and Laura's mobile phones.

 

Dance, Dance, Dance.

 

And finally, this wonderful photo that appeared in my Facebook timeline. Taken by my friend Jojo who is an artist. I'm getting it turned in to a print to be framed in my house. I love it.

 

 

 

 (This photo belongs to Jojo Gingerhead!)

UPDATE! I got a response from the man himself!

Call me old fashioned, but I think if you are going to write judgemental opinion pieces in the national press, you should be prepared for people to disagree with you and if you choose to respond you should be grown up enough to do so with intelligent debate, rather than patronising comments like this.

Darn technology!

Oopsie - there appears to be a technical glitch of some sort on Philip's Twitter account and his tweets have disappeared. Luckily I took screen shots, so just for an accurate record (once a historian, always a historian!) here they are...

 

And I actually missed this bit but Jessica has sent me a copy of what came next. She responded with "So lovely of you to say so! What a sweetie." and was then accused of homophobia! That's left me a bit speechless.

 

 

 

 



Good behaviour...

I very much enjoyed Saturday's bad behaviour.

But... I got some advice from a wonderful cancer physiotherapist called Clare Lait (@ClareLaitPhysio)....

... and I've put my running trainers away.

(Please excuse me for a moment while I go and sob...............................................)

I've now got a better understanding of why I shouldn't be running. It's the stupid, stupid radiotherapy that's to blame. It's not just about my skin getting damaged. It's about what's going on internally too.

In simple terms for anyone who isn't all that interested:
Right now I'm 12 weeks post surgery and everything is healed very nicely and neatly in there. There's a good chance radiotherapy is going to damage what's healed, so I kind of need to behave as if I've only just had the surgery, all over again, and be very, very careful.

More specific detail for anyone who is interested in the effects of radiotherapy on LD flap and expander recon:
So the expander implant is there to save a space for a permanent implant which will be put in at a later date. The expander went in empty, and gets filled up bit by bit over time, stretching my skin carefully and gradually. The expander is very rigid and hard - it has to be to hold it's own against all the muscle and tissue as that heals and knits together in its new home on the front of my body.
Clare explained that the expander implant I have in is also stretching the pecs at the front, therefore weakening them. And radiotherapy can cause the capsule (the scar tissue around my temporary expander implant) to contract, potentially moving the expander. Running could also cause the expander to rise up, or weaken the pecs even further.
If the expander moves, it is essentially saving a space for the permanent implant in the wrong place. And that can't really be corrected. So in the interests of keeping everything where it should be now, for the best cosmetic result later, I'm not going to run again until the surgeon says yes. Gutted. But I don't regret the one run I did. It felt amazing.

(PS to be fair, I think all this has been explained to me by my surgeon in the past, it just didn't really click until today.)

Bad behaviour

Gosh, I hope none of my medical team come across this. If they do I'm going to be in for the mother of all bollockings....

But I just had to share...

JUST BEEN FOR A RUN!

WOOP WOOP!!

Oh my days it was amazing. Brilliant. Amazing. Brilliant. L O V E D.   I T.

I stopped running in September, part way through my second chemo cycle. I got a stinking cold, which lasted for 3 weeks, and then it was downhill from there. Chemo side effects, coughs and infections. I managed one 3k run in December after my last chemo, but that was all. Then I had surgery in January and since then I have been banned from running. I checked with my surgeon again this week and I am still completely forbidden from running. Absolutely, categorically, 100% banned.

But! But! But! You see, the thing is I've been desperate to go for a run for so long now. Desperate! I love it! Plus, it is good for your health, and it also reduces your risk of recurrence of breast cancer. And... I know people generally don't like to talk about this, but what if there's a zombie apocalypse? Eh? What then? I need to keep my fitness levels up. How tragic would it be to survive cancer, only to get eaten by a zombie, just because I had not kept my fitness levels up by running? Even my surgeon can't argue with that.

And if all that is not enough to justify my complete and enthusiastic disobeying of strict orders.... it made me so HAPPY! Look at! This is me just after the run. #SorryNotSorry because it made me really happy!

(By the way, can I just say... literally no makeup. Those eyebrows are real!)

 

It wasn't my most impressive run in terms of either speed or distance, but to be fair - cancer, chemo, surgery, radiotherapy... Under the circumstances I reckon not bad!
 

The good news for my surgeon is I probably won't get many more runs in for a little while now. I'm 4 radiotherapy zaps in and already my skin is burnt and peeling. It's going to need some real care, and wearing layers of sports bras and going out running and sweating like a pig isn't going to help.

But never mind, that's life. Right now I'm just over the moon that I was able to go out and run today.

About counselling

Yo!
I wrote a post for the Young Women's Breast Cancer Blog but thought I'd share it here too, both for any young women with breast cancer who read my blog, and also for everyone else who finds themselves here because you know what, you've all got shit to deal with and you would probably all benefit from some counselling. It's ace! Do it!

Much love
xx

PS - the things I say about people offering solutions, platitudes etc - I'm guilty of all that. This is about how a counsellor doesn't do what all of the rest of us do in normal conversation. MUCH LOVE!! XX



**************************
Hi!
 
This is Sarah - the one who set this blog up! I've decided to write a post myself, about counselling....
 
I remember the first time I mentioned in a blog post that I was going to counselling. I wasn't completely sure I wanted to share this information as I was a bit embarrassed. I would never, ever think this about anyone else, but when it came to myself, it felt like admitting I was going to counselling was admitting failure, or that I am weak, or damaged. (There are moments I can still feel like that - but not because I really believe it. It's because there is still so much stigma about mental health in our society.) But I shared it anyway, and have continued to share it whenever it's relevant. It's an important part of what's been going on in my life over the last year.
 
I first went to counselling at my local cancer support charity because my mom had died from breast cancer, and I had been referred for genetic testing because of family history of breast and ovarian cancer in my family. I was considered "high risk". It was all a lot to get my head round. My genetic test result came back as negative - ie, there were no faults in my BRCA1 or BRCA2 genes which were the two that were most likely to be to blame for a family history of cancer such as mine. A couple of months later I was diagnosed with breast cancer myself anyway at age 33. As you might guess, I kept up the counselling sessions.
 
As I said, I often mention counselling in my blog posts, and I also often mention it in discussions in the Younger Breast Cancer Network UK forum. As a result, people regularly ask me questions about counselling, and I thought it might be helpful to write all about it here. I'm structuring the post as a kind of Q and A and I'm writing it with other young women with breast cancer in mind. If there are questions I haven't answered, please ask away and I'll add to this. (You can post a comment on here, email ywbcblog@yahoo.co.uk or tweet @youngbcblog.)
 
What type of counsellor do I have?
Not normally the first question people ask me! But I think an important question to answer first here. There are lots of different approaches to counselling. For example:

• CBT - Cognitive Behavioural Therapy. This looks at the way you think and behave, helping you to understand how the way you think affects the way you behave, and vice versa, and then identify ways of making changes that will help you. It looks for practical solutions to problems, and you get set "homework"! You can read more here.
• Psychoanalytical and psychodynamic therapies. These approaches are based on an individual's unconscious thoughts and perceptions that have developed throughout their childhood, and how these affect their current behaviour and thoughts. (Think Freud.) You can read more here.
• Humanistic therapies. These focus on self-development, growth and responsibilities. They seek to help individuals recognise their strengths, creativity and choice in the here and now. You can read more here.

The type of counsellor I have is a person-centred counsellor - this falls in to the category of humanistic therapies. I landed a person-centred counsellor by chance. I didn't even realise until my first session that there were different kinds. Me being me (nosey, always want to know what's going on) I promptly went away and read all about it and I was very chuffed I got a person-centred counsellor! The thinking behind the approach sat really well with me and felt right for my situation. In a nutshell, a person-centred approach to counselling is a non-directive approach. The counsellor is not there as an expert - this is about me, and I am the expert on me. The counsellor doesn't dictate what is discussed, that is up to me, I lead the conversation. The counsellor is not there to advise me or tell me what to do - I know best. Sometimes it might take me a little while to work it out, but that's what the counselling helps with. It helps me work through what's going on in my head, how I feel, and what is right for me. I'll explain a little more about how in some of the answers below. (And if you're interested in the person-centred approach I recommend reading Carl Roger's book "On becoming a person".)
 
What is counselling like?/ What happens at counselling?
You talk and the counsellor listens! It took me a little while to get into it - I'd never been before so I didn't know how to "do" counselling. I felt awkward talking about myself - it felt self-indulgent and a bit rude. I'd always ask the counsellor how he was at the start of the session - it felt rude not to! I also wanted advice and answers. I'd repeatedly ask him what he thought (still do actually!). I wouldn't know how to talk - even if I had loads on my mind, I didn't know how or where to begin. But it comes more naturally once you get used to it.
I thought counselling was talking and sounding off. But actually it's very different to normal talking and sounding off. I do a lot of both to my friends (and anyone who'll listen really!) but I don't always feel better for it. The difference in counselling is the part the other person - the counsellor - plays in the conversation. I don't get advice and solutions, I don't get platitudes. I'm not being judged. I talk, and what the counsellor does is listen to me very carefully, and at times, make observations, or ask questions. It might not sound like much but these things make for incredibly helpful conversations. More on why below.

How and why does counselling help?
You can say whatever you want without risk of offending or upsetting anyone. This in itself can be really helpful at times. A massive rant, where you can name names and be as blunt and unfair as you want about everything and everyone - and no repercussions!

You don't get offered advice and solutions. People in your life who care about you tend to do this at every opportunity whether you ask for it or not. There are times you need advice and solutions, but there are also times you don't. Sometimes you just need to talk, and be heard and understood and sometimes you need to talk because just talking things through helps you to process and understand things and reach conclusions and decisions yourself. At these times, the last thing you need is someone else's advice and suggested solutions! They tend to be based on the other person's experience and personal baggage and so can leave you feeling fed up, frustrated and as if you haven't been heard. You were talking about you and your situation! You didn't ask for their advice based on their situation which they now want to tell you all about! Shut up! Well, at counselling, you don't get advice and solutions, the counsellor never talks about themself - and it's wonderful!

You don't get offered platitudes. Doesn't matter what you say at counselling, you won't get a platitude. That too, is wonderful. Platitudes are what people throw back at you when there's no advice or solution. For example: 
You: "I'm so upset, I have cancer and I might be dead by the end of the year."
Other person: "You aren't going to die, I just know you're going to be fine. Besides - we could all die at any time. I could go out and get hit by a car tomorrow!"
A couple things to say about this. First of all, I have lost count of the number of people who have told me they might get hit by a car, or bus. Apparently this is on everyone's mind, and the way most people think they are most likely to die? Oh please! Look, listen, look again when you cross the street, and stop telling me you might get hit by a car!
Secondly, they don't mean to do this, but the person has basically told you to change the topic, because, as there is no solution to your problem, they don't know what to say, so now the conversation makes them feel uncomfortable and they want it to stop. This is why platitudes are so annoying - they are meaningless and they shut you up.
At counselling, the response to you saying "I'm so upset, I have cancer and I might be dead by the end of the year" won't be a platitude that shuts you up. It'll be either quiet, to allow you to continue talking, or if you don't know what to say next, it'll be a question or observation that enables you to continue, if it's something you need to talk about.

The counsellor is very good at listening. VERY GOOD! And as a result what they can do is make observations that help you to move forward in your thinking, consider other perspectives, understand what things mean for you and so on. They can seem like really subtle points, but some of the things that a counsellor says can make a profound difference to the way you think and feel. They're the kind of observations and questions you don't get elsewhere.
As an example, after my mom died I was carrying a lot of guilt around with me for not knowing how ill she was. She'd kept a lot from me. It was over a year after her death and the guilt was playing on my mind every day. I told the whole story of her cancer, from diagnosis to death, and the year since her death, in great detail over a number of sessions. The counsellor barely got a word in, but those he did were so helpful. I remember him pointing out I say "should" a lot. For example, I should have known how ill she was, I should have done this or that differently, I should feel this way or that. He would ask, "Why should you?"
Another result of the counsellor being so good at listening, is they can ask you some very thought provoking (sometimes quite provocative) questions. For example, my counsellor asked me "Can you make someone tell you the truth?"
These things might not seem like much, the little observations, the questions like that - but actually they are incredibly powerful and effective in helping you to process thoughts, see things from different perspectives, and ultimately deal with things and move forward. I'd been tormented by guilt for over a year after my mom died - in a matter of weeks of counselling, it had gone.

And all of this is happening in a safe place -you aren't being judged, and nothing changes in the outside world. There are no repercussions. No-one else will ever know what you've said (unless you decide to tell them.)

Should I go to counselling if I don't know what to talk about?
Yes! I didn't know where to begin. It's ok because the counsellor is there to help you to talk. They're used to people turning up and not knowing where to begin or what to say. I started just by telling my story, in great detail, from start to finish. It was the counsellor's questions and observations that helped open the conversation up. I'm used to counselling now so I generally arrive and launch straight in to what's on my mind and my own observations about it and he adds in his own along with questions. It's brilliant.

Who goes to counselling?
More people than you realise, and people you really wouldn't expect are going to counselling! Think of the most together person you know. Chances are, they've been to counselling. When I first started, I admitted it to a friend. She told me she'd been to counselling before. I couldn't believe it. I then admitted it to another friend. She had started counselling recently. Over time I discovered that lots of people I know (not including the ones who have been diagnosed with breast cancer!) have been to counselling or been on anti-depressants at some point in their life. It's more "normal" than you'd think - it's just that most people don't talk about it.

Is counselling just an American thing?
Nope! Just seems that in the USA people are much more open about it. Counselling or therapy isn't seen so much as something "crazy people" do. It's something anyone might do, because we are all people, we all have emotions including the bad ones, life can be horrible, and counselling helps.

Will it open up the floodgates?
If you have floodgates that need opening then it might! In my experience it hasn't. The only time I cried at counselling - and it wasn't full on crying, it was more red/watery eyes and a wobbly chin - was when my beautiful dog was diagnosed with cancer. That was the final straw at that point! Other than that though, there haven't been tears. Just me unpicking everything that's going on in my head.

Where do you go for counselling and how much does it cost?
There are a number of options. If you're a young woman with breast cancer in the UK, then chances are, not too far from you, there is a cancer support charity. Some areas of the UK have places called Maggie's Centres. Some have places called The Haven which are specifically providing support for people with breast cancer. Others, like where I live, might have individual local support charities and centres (the one near me is called Coping with Cancer in Leicestershire and Rutland.) If you can't immediately find a centre near you, Macmillan should be able to advise.
My personal advice would be to seek counselling via a cancer support charity in the first instance as their counsellors should be experienced in supporting people with cancer. But there are other ways of accessing counselling, for example via your GP, and sometimes through work. (If you have private healthcare cover, counselling may also be covered as part of this.)
Generally accessing counselling through these routes should be free of charge.

You can of course also look in to paying for counselling sessions. If this is something you want to explore then these websites might be of use:

BACP
Counselling Directory 
 
Any other questions I might be able to answer?
If there are questions I haven't answered, please ask away and I'll add to this. You can post a comment on here, email ywbcblog@yahoo.co.uk or tweet @youngbcblog.

What are your experiences of counselling?
If you are a young woman in the UK and have had counselling to help with dealing with a breast cancer diagnosis, treatment, life after cancer etc and want to share your experience on this blog (you can do so completely anonymously) then that would be wonderful! Please get in touch at ywbcblog@yahoo.co.uk.

Burn the pages (start tempting fate)

I hereby dedicate this post to anyone who's at the end of active treatment for primary cancer!

I know it's a heavy load

carrying those tears around

carrying those fears around

worry makes the world go round

Breast cancer isn't a homogeneous disease and young women with breast cancer aren't a homogeneous group. We have different circumstances, different experiences, different beliefs. I guess these are some of the factors that lead to different outlooks and perspectives, different ways of dealing with cancer... different ways of moving forward once treatment for a primary breast cancer is complete.

Recently I saw an argument unfold between a number of women which was ultimately about life after treatment for primary breast cancer. (I expect the same argument fires up between people every single day). There's no right or wrong here, you feel how you feel. But I realised how differently people do feel. Some are very angry. Some are very frightened. Some block out all emotions entirely.

For a brief time, it made me question my own outlook. I had been ready to get back to "normal", to get back to my life, and live it to the full. I was feeling positive, and sometimes even excited. The argument made me wobble. I felt stupid. Was I stupid? For thinking that I could live a happy life, that I could be well, that I could do anything?

I offloaded at counselling. (Can I just say, counselling is amazing, everyone should go. Do it! Go and sort your shit out, you'll feel so much better for it.) I explained the whole argument, the different sides and how it had upset me. The conversation reached a point where I hesitantly suggested that I'm not stupid, that assuming it doesn't come back, assuming I don't get a secondary diagnosis, cancer might actually have been more of a positive thing in my life than a negative one. I couldn't believe I was saying it. I was scared to say it, but it felt true, so I went on. I feel happy. I feel well. I think things will probably be ok. My counsellor pointed out that when I was saying these things, I said them very, very quietly.

I was worried about tempting fate.

Fear is powerful. Powerful and manipulative. And when it comes to cancer - there's a lot you might be afraid of: loneliness, helplessness, pain, suffering, death. You can tell fear to f. off, but it won't go away without a fight. It will start threatening you with more fear -specifically the fear of the consequences of tempting fate.

(Image of fear)

But I don't want to live in fear just as much as I don't want to be angry and I don't want to be sad. I want to be happy. I want to enjoy myself. I want to spend time doing things I enjoy, with people who make me happy. You can't really do that if you're living in fear, or if you're holding on to anger. 

I think this fear of tempting fate business is all about self preservation. The horrendous shock and horror that comes from the original cancer diagnosis is monumental. Once you've experienced that you never want to experience it again. You can't guarantee it won't happen again, so you get in to the habit of trying to be prepared for the worst. But over time, left unchecked, being prepared for the worst has potential to turn into constantly assuming the worst. Nothing can shock you because you're already dealing with worst case scenarios (that haven't actually happened) but you're unhappy because you're being dominated by fear.

So you're left with a choice:

• Always be prepared for the worst - means living in a constant state of anxiety. Or,
• Assume the best - means risking another life-shattering shock.

Maybe the bravest thing to do is to assume the best. Let go of the fear. Let go of any sadness. And if you have it, let go of the anger. The only way to get rid of the fear of tempting fate is to start tempting fate and see what happens.

Yesterday is gone and you will be ok

Place your past into a book

Burn the pages, let 'em cook

I've thrown away all the information the hospital gave me on diagnosis and chemotherapy. It felt good! I've been saying out loud that I feel well, and happy, and I think I'm going to be ok. It feels good! I've returned to work. It feels good! And despite me doing and saying these things and not following them up with touching wood etc (to hell with what I said in this post) I have not been punished by fate with finding a new tumour (I've been checking, thoroughly and carefully).

The wobble has passed.  However long I have cancer free - whether it's weeks, months, years - I'm going to make the most of my days and enjoy them.

I choose happiness.

 

 

 

 

 

 

 

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!

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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.

Chemo#3
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.

Shampoo

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.