First hair cut

Ah fuck.
 
I had my first post-chemo, post-cancer hair cut yesterday.
 
The hairdresser, Jamie, cut and coloured my hair beautifully. The hair cut itself is exactly what I asked for, is the best thing that could have been done with my hair at the length it's at while allowing for me being desperate to grow it out as quickly as possible, and is technically a very nice and good hair cut.
 
Unfortunately none of that matters because the reality is I look  completely shit with short hair. I look shit. I look like a boy. And to top it all off, now I have to put products in my hair that make my hair feel like a boy's hair too. That not-quite-sticky-not-quite-crunchy feel. Urgh. Fuck sake. Gross.
 
But, anyway,  ... let's get this over and done with.
 
First of all, as a reminder, here are my hair styles over the last 15 years.

 
Yep. Same haircut for the last 15 years. I am not fashionable. Not wacky. Not glamorous. Not funky. Not cool.

I am plain. My hair is brown. I have it between bob and shoulder length. I sometimes wear it down. I sometimes tie it up. That's as interesting as it gets because I am plain and boring and I am very happy that way thank you very much.

But right now, my hair is short like a boy's and that's just my tough shit because I had cancer. I can't bear to wear that bloody wig any more, and I can't hide away until my hair has grown. I can't even hide away over the next week as I've got plans every frigging day - some involve seeing people I see regularly, some involve seeing people I haven't seen in ages, and some involve meeting people I've never met before. One of the days I am going to be doing another talk in front of an audience (another "Oi! Tories! Stop selling off our NHS you bastards!" talk.) So I can't hide my boy hair away. I've got to just suck it up and go out there.

I don't know who reads my blog. But it generally gets a few hundred hits a post (I know, right?! WTF?!) so I'm hoping that's as many of my friends and colleagues as possible see this. I'm going to share photos here so it doesn't come as a shock when you see me. For those of you that do see this before seeing me, do me a favour and don't squeal at me about my hair! Please! There's no amount of kindness or well-meaning compliments that will help here - I hate it with a passion. The less attention the better.

 



This was it last night immediately after it was cut. But I prefer back and off my face like the above pictures (I think).

 

 

Maybe in time, as it grows, and as I maybe get more skilled with products and hairband and slides, I might hate it less. But right now.... no. 

 

Fucking cancer.

 

Fucking, bollocking, bullshit cancer.

 

BAH!

 

I am now going to go to a local Labour party meeting and instead of listening to what my MP Liz Kendall has to say about leadership and stuff, I am going to obsess over how jealous I am of her gorgeous, beautiful, perfect hair.

 

Laters x

Jojo

Oh Jojo, I'm in pieces here.

I've turned to writing because I don't know what else to do, even though I don't think it is possible to right now to think straight or put the pain into words. Yesterday when I heard you were gone, I was stunned. I didn't know what to do. I ended up painting the stairs and landing in my house. It's needed doing for a long time (years) but I can never be bothered. But yesterday, I didn't know what else to do with myself and I needed to do something. So I lay sheets down on the floor, and I painted. Methodically, and carefully, and quietly, I painted from floor to ceiling. When I was done, I washed the roller, the tray, the paint brushes. I showered. I ordered a takeaway. And then I sat and started to cry. The crying quickly became the ugly wailing kind. And then, out of the blue, for the first time in my life, I had a panic attack. My heart pounded. I was hyperventilating, my face and head and neck turned to pins and needles. My lungs hurt. I nearly passed out. I've had to try since then to keep the tears under control, because when they build up, I can feel my heart and my breathing start to go again. I can't hold the tears in any more so I am writing as I cry, in the hope that focusing as much as possible on this prevents me losing my shit again as badly as I did last night.

Cancer is too cruel, and completely unfair. I think I should feel angry right now. But I just feel confused. I wish I could find a way to put right all of the wrong cancer is doing. There's 7 billion of us on this planet. You'd think between us we could find a way to stop cancer. Especially when it is targeting people who are so young, vibrant and full of life. This should never, ever have happened to you. I am so sorry.

Oh Jojo, my heart is broken. I've only known you a short time, but from day one I have been indescribably proud to be able to call you my friend. So, so proud. I have wanted the whole world to know that I am friends with the amazing Jojo Gingerhead. I talk about you all the time. There's a picture of me and you on my desk at work. You have said so many kind and lovely things to and about me, and they have meant so much, and every time, again, I've felt so proud, and so lucky, to have you as my friend. You really are one in a million, and it is clear that everyone who has ever known you thinks this too.

The feeling of loss is overwhelming. You are unique. There just isn't anyone else on earth with your perfect mix of bright, rude, sweet, heart warmingly disgusting humour. This world has lost just one of it's very, very best. We will treasure everything you have left us. Your writing. Your art. Your photos. Your music. And all of the happy memories. 

Thank you Jojo Gingerhead, for being so utterly wonderful.

I'll miss you forever.

Farewell my friend. I love you. XO

No words

Oh Jojo,

My wonderful , bright and brilliant friend,

There is so much I want to write, but at the moment I can't find the words. I'm just at a loss.

Rest in peace, beautiful girl. I love you so much.

The lump

I'll start with the ending which is:

I'M OK!

Now back to the beginning....

Niggles

For about a month, something has been worrying me a bit. I kept thinking I could feel a lump in my "good" breast (ie the one that didn't have cancer). This is the circle I've been going round and round in: Feel lump, worry, convince myself it's nothing, put it to the back of my mind, feel lump again, worry but decide I can't face cancer again so put it to the back of my mind, feel lump again, worry, convince myself it's nothing but I'll just ask my surgeon to check when I see him in June, put it to the back of my mind, feel lump again, worry but decide I can't face cancer again so put it to the back of my mind, and so on and so on.

Yesterday morning I was at a "worry" point, partly because yet another of my most wonderful friends has just found out her cancer has returned, and spread to her liver. The first sign of this was a swollen lymph node by her collarbone which led to her having a biopsy and CT scan, and they confirmed secondary breast cancer. This has really shocked me and upset me. (Obviously.) And it brought my own worries back to the front of my mind. I decided to book a GP appointment to get my Tamoxifen prescription and to also ask the GP to examine me and show me again how to best examine myself - including lymph nodes. As a reminder - my original cancer couldn't be felt, neither could my lymph nodes, so I've actually no previous lump-feeling experience to draw on.

Terror

I went in to see the GP and she said of course she would examine me and explain everything. So I lay there on the bed, while she talked through how best to do a self breast examination. And then she stopped talking and her whole face changed. In one moment, the atmosphere in the room had switched from relaxed to very, very tense. I've had enough medical appointments in the last year to know that while some doctors and nurses are quite good at hiding things, you always get at least a moment of truth visible in their face as they first see/feel/read/hear something. I think this GP actually forgot altogether to put on her poker face. She stopped talking to me and stopped looking me in the eye, and focused very seriously on the same area that I'd been worrying about. And in that moment I knew.

She told me that there was a lump there, but that I shouldn't panic or lose sleep. Most lumps are nothing sinister. It was much more likely to be a cyst. I should not lose sleep over it. But because of my family and personal history of breast cancer, and my broken PALB2 gene, she wanted to do the 2 week referral. The "2 week referral" is the less intimidating name the NHS has chosen for what is actually the "We aren't going to hang around because you might have cancer" referral. When you're told you've got a lump and you're being given the 2 week referral and you've only just had breast cancer there's no amount of "It's more likely to be a cyst" that's going to help.

Meltdown

I couldn't face waiting two weeks and I couldn't face getting the "Suspected breast cancer" appointment letter in the post. I'm not sure what I was thinking, I don't think I really was thinking. I just walked out of the doctors, got in a taxi and went to the hospital. At the reception desk of the Breast Care Unit I completely lost my shit and burst into tears. I somehow managed to tell the receptionist that I didn't have an appointment but I'd just finished treatment for breast cancer and now my GP had found a lump, and I needed to see my Breast Care Nurse (BCN) - I didn't care if I had to sit there all day waiting on the chance someone else didn't turn up for their appointment. The receptionist was so kind and understanding, called the Breast Care Nurses' office and left a message. I didn't have to wait long at all until a very nice woman came to collect me and take me to one of the Quiet Rooms. I explained everything to her so that she could then go and relay the information to my BCN once she was out of clinic.

My amazing BCN came in, and I just started bawling my eyes out. I told her what happened at the doctors, and I cried, and cried and said that I just can not go through this again. I can't do it again. I can't. She told me she'd sort it so that we knew what was going on that day and to just think that I am having surgery on that side anyway, so nothing changes except the surgery might need to be sooner than planned. But what if it's in the lymph nodes? "Don't worry about that until you've had the scans and we really know what this is." She said that she would get me in with my surgeon and for an ultrasound that day, and if necessary biopsies, but I would just have to wait a bit until clinic was finished.

So I waited in the Quiet Room on my own, and as I cried, I made a series of decisions. I decided that this time I wanted surgery before chemo. I decided I would try the cold cap again. My hair's just grown back, I want to try and keep it. But I would buy a new wig as my one is old and tired now. I decided I would ask for a PICC line or similar from the outset as my veins aren't going to cope with more cannulation. I decided this time I would eat healthily and drink all the green tea. I decided to write a letter to everyone I care about, ready for if I die, so that they know how much they mean to me. I decided to buy one of those portable phone charger things because I use my phone so much while I am sat having chemo and the battery doesn't last long enough. I decided to buy an ipad. I decided to write a Will.

And then a nurse came to take me through to see my surgeon. He and my BCN came in to the room and again I started bawling my eyes out. I explained things to him, and then he examined me.

Hope

He has a MUCH better poker face than the GP. Almost perfect. But not quite. It was just for one split second, but I saw something flicker across his face as he felt it. And a moment later, just for the tiniest moment his right eyebrow raised the tiniest bit. But once he'd finished he told me he didn't think it was anything sinister. He said there are lots of reasons for lumps, ranging from breast cancer down to pretty much nothing. I can't even properly remember what he told me, it's a blur, but it was something along the lines of he thought what he could feel was more like thickening of tissue - and that can be caused by chemo. But he wanted me to go for an ultrasound scan just to make sure. He drew on me to show where I needed to be scanned.

I wanted to be happy but all I could think of was my very first ultrasound scan which was for my peace of mind, after two nurses examined me and thought everything was fine. The scan showed I had cancer. So I just held my breath, crossed my fingers, and waited to be called through for the ultrasound scan (which was being done in people's lunch break because that is how kind and lovely these people in the Breast Care Unit are!)

Relief

I lay on the bed and concentrated hard on the radiographers' faces while they concentrated hard on the images on the screen. They both had a go at scanning me, and they used two different kinds of probe. I could also see some dark images on the screen - I still have the ultrasound image of my original tumour imprinted on my brain. But they weren't taking screen shots or measuring anything. Good sign! And then they told me that there was nothing sinister there. I cried and cried and cried! Their report was NAD, U=1 (translation: Nothing abnormal detected, benign). They brought me tissues. I cried some more. They were saying something about scar tissue, thickening, and glands. I don't know. Whatever it was though, it's not cancer. I'm ok.

Thanks

Those were a few hours of pure hell, but it could have been a full two weeks of hell and I don't think I'd have got through that. I owe a lot to those hospital staff that went out of their way personally to help me yesterday. I'll be writing to them to thank them, and the card will be accompanied by the biggest and best box of chocolates I can find. Amazing nurses, amazing surgeon, amazing hospital staff, all of them. And I am now under orders to not do any self examinations at all, and instead to forget entirely about cancer until my next surgery, and enjoy life.

 

Natalie Portman's hair

Despite freezing my head during all six sessions of chemo, in the end, I lost most of my hair. What I did keep needed to be chopped off because I looked like something from a horror film. Bad times.

But since chemo stopped it's been left in peace to grow. And it has! Phew. And now, on 27th May, I am booked in for my first post-cancer and post-chemo hair cut.

To be honest, I'm feeling a bit stressed about it although it desperately needs to be done. I took these photos a couple of weeks ago. I tried to make it as best as possible. I even smiled in one photo! But I'm really not happy. I don't want short hair and I don't want to look like a boy.

 

 

Since then it's grown a little bit more - and there are another 17 days to go until the chop. So I've been looking at photos at very short hair and pixie cuts on girls online.

I have decided I've fallen in love with Natalie Portman.

In 2005, for the film V for Vendetta (which I have not watched because it sounds mean and scary) Natalie had her head shaved. Full on buzz cut. Here it is! I expect that this act has made her (or her hair, at least) an object of obsession for many a chemo-girl around the world since.

The thing about Natalie Portman of course is, she's absolutely stunning. And it turns out she has a nicely shaped head. (One of the reasons I knew I couldn't EVER go out as a baldy and why I stuck with the cold cap is because I know I have a wonky head.)

Anyway, back to the point. She had her head shaved! Which means chemo-ravaged women like me get to search the internet for photos of what happened next with her hair.

First it was fuzzy. Because she is Natalie Portman though, she still looks beautiful. (Also, of course - she didn't lose eyelashes and eyebrows to chemo - always helps with the whole "not looking like a cancer patient" thing.)

 

Then came some very cute pixie cuts... (I don't actually know if I have these in the right order - it's just my best guess)

 

 

 

 

Ooh looky - it's getting longer here......

 

 

 

And then.... I can't find any more. She suddenly seems to have long hair again. So I guess she didn't bother with the awkward in-between stage and got hair extensions instead? Good for her. So might I.

 

Although if anyone finds any pictures that show otherwise I'd love to see them!

 

So, I'm going to print these off, take them with me to the hairdressers on the 27th, and demand they give me whichever Natalie Portman haircut they can manage with what I've got. And then if it doesn't stress me out too much, I might ditch the wig and go out in public with my actual hair from now on. I honestly don't know yet which is going to be worse, but I really am sick to death of the effing wig.

 

So now I am going to start shopping for lots of pretty headbands and slides as part of my efforts to look more Pixie and less Boy.

 

 

A note about blog comments

Hello everyone, and an especially big, warm hello to all the Anonymous's out there!

Welcome to my blog. I just wanted to clarify a few things about comments.

I moderate comments, and I don't publish them all.  I'm actually under no obligation to. It's my blog, my decision.

I'm particularly unlikely to publish argumentative comments and comments from people who are anonymous. And it really doesn't matter how many times anonymous people whine at me that it's censorship, swear at me, call me names, or send me nasty comments about how I'm not publishing your anonymous comment because you are right, I am wrong and I can't handle it. That's not the reason why.

The reason why is that this is my personal blog, my personal space to share. There are limited hours in the day, potentially limited years in my life, and I'm just not going to spend them in never ending arguments with anonymous commentators on the internet. If you don't like it, don't come here! Set up your own blog, share your views there. Or go and argue anonymously with someone else.

This doesn't mean I refuse to engage in debate or consider other people's views. Quite the opposite - I love debate, I love hearing other people's views, and I love learning more. These are all very important things to me, and I am keen to engage with people who can add insight, help me to learn and see things from different point of views, and do this in constructive ways.

:-)

Sarah



  

I won't keep quiet about this

My whole life I have talked too much and been too open. If there's something I feel I need to say I just can't stop myself from saying it no matter how hard I do, at times, try to keep my trap shut. If I'm thinking something and it's important to me (even just in that moment) I'll say it. As a result I have spent a lot of my time worrying about having said too much, having said something I shouldn't or having said something to the wrong person. On a very regular basis I consider taking this blog offline, leaving Twitter and leaving Facebook. All because I think I have overshared or been too vocal and for one reason or another just want to quietly hide away from the world. If I keep quiet I won't annoy anyone. If I keep quiet I won't embarrass myself. If I keep quiet I won't upset anyone. If I keep quiet I won't get in to trouble. But it never lasts. As soon as there's something else I want to say, it's out there. I just can't help it.
 
A few days ago I was involved in an online discussion about the NHS and cancer care - and what the policies of the different parties were. A number of people had some really interesting insights to share - especially those who work within health and social care. A number of people were asking questions about the different political parties - where do they stand on this or that, what would the impact of their policies really be. I was speaking up in support of Labour pledges including repealing the Health and Social Care Act and capping the amount of profit private sector companies could make on NHS contracts. I shared a video which explained the impact of the steady privatisation of the NHS. Someone else (a Tory voter) responded with "Yawn." I shut up. I felt embarrassed and stupid. Should I have not said so much? I actually lost sleep over it. (Yes, I know, I need to become a lot more thick-skinned.)
 
Then last night I turned the TV on at 10pm to start watching the coverage of the election results. The first thing I saw were the shocking exit poll figures. I couldn't believe it. Today, the votes have been counted and the exit poll was pretty much spot on. We now have a Conservative majority government. And I realised... I've spent so much time worrying about talking too much when actually I have not been speaking up nearly enough.

The coalition government has been vindictive and cruel to the poorest and most vulnerable people in our society, and it is quickly dismantling vital public services. What has happened as a result over the last 5 years is disgraceful. I will give two examples...

Worsening, deepening poverty and over 1 million people needing emergency food and support from food banks
Welfare cuts since 2012 have increased poverty, pushing hundreds of thousands of people, including 300,000 children below the poverty line. New Policy Institute estimates that 29% of children are now living in poverty after housing costs. (Further info here). In 2011-12, 128,697 people needed emergency food and support from a food bank. In 2014-15, as a result of the coalition's austerity measures and welfare cuts this number increased to 1,084, 604. (Further info here)

The NHS is being sold off piece by piece to private companies in order to make a very small number of rich and powerful people even more rich and powerful
As a result of the coalition's Health and Social Care Act our NHS is rapidly becoming privatised. For example, private firms have been winning 40% of contracts that Clinical Commissioning Groups have put out to tender, worth a total of £2.3bn. That's £2.3bn of our National Insurance contributions being given to the private sector, instead of being invested into our National Health Service bodies. This is not about improving care or efficiency. It's about a minority of rich and powerful people becoming even more rich and powerful at the expense of the rest of us. 24 Conservative MPs and peers who backed health reforms have links to 15 private healthcare companies that won £1.5bn of NHS contracts in the two years following the Health and Social Care Act. (Further info here) These private companies exist to make profit for their owners. They do this by making cuts - cheaper hospital food, less staff, zero hours contracts for staff etc.

Those are just two examples and they are not even the tip of the iceberg.

And now voters have elected a Conservative government, which is apparently planning a further £12bn cuts to welfare* (Further info here). To give this some context, an estimated £119bn is lost in tax evasion each year and this figure is steadily rising (Further info here) - but instead of strengthening anti-avoidance tax laws, the government is more concerned with reducing support for people who are sick, disabled, homeless, full-time carers and so on. So this election result, which means another 5 years of Conservative government, is devastating news for the majority of people living in this country - although it seems that most of those people don't actually realise that.

(*immediately after posting this blog I saw this article - just hours after the election DWP releases document on cuts to disabled work access scheme - and so it begins.)

I fundamentally disagree with Conservative austerity - it is based on ideology not economics. So far I've been ok myself. I haven't needed to go to a food bank in order to eat. I haven't had to make a choice between eating or switching the heating on in the winter. I haven't had to depend on a loan shark company in order to pay a bill. But that's irrelevant. I know full well what is happening around me. I know people are suffering and being punished by a cruel government simply because they are the ones who do not have power, and do not have a voice. And this is set to continue for 5 more years.

I will not keep quiet. I want to speak up more, and do more.

I never, ever thought I would become a member of a political party. I never liked the idea of pledging any kind of allegiance to any political party. I've always voted on an election by election basis - whose policies do I agree with right now? I will vote for them. But I have come to two conclusions during this election campaign.

1. The left of centre vote is split between so many parties that no one of them could possibly win a general election. There is a lot that the Green Party stands for that I respect. I love the idea of the Women's Equality Party that Sandy Toksvig is setting up. But in reality neither of these parties are going to win the next election. We know that already.
2. I  do largely agree with Labour policies and I have spent a fair bit of time recently talking to Labour MPs and Parliamentary Candidates. I've been impressed and moved by their passion for a fair, equal and caring society.

So, I decided to become a member of the Labour Party as of today. I want to speak up, be involved, and do whatever I can to help Labour win the next general election in 2020. And I'm not surprised at all that a number of my friends have made the same decision today as me. Because while we can feel gutted about this election result, we can all also play a part in making it different next time.

If you too want to join Labour you can do so quickly and easily here.