To baldly go

Getting your head shaved is one of those big moments. It’s such a bold statement. You can no longer pretend cancer hasn’t happened. Some people get it done as soon as the treatment starts but I waited as long as possible.

For most of my chemotherapy I wore an ice cold cap which protected the hair follicles by freezing my scalp. It worked pretty well but was so painful that in the end I had to ditch it. Thats when the hair loss began properly.

I didn’t go completely bald. Oh, no. I was left with big freaky tufts of soft fluffy hair. It was a cross between a mullet and a mohican. A mullhican if you like.

Meet the mullhican

I really needed to get it shaved off so it would all regrow at the same length. It’s more than five weeks since the chemo ended. Amazingly my eyelashes and eyebrows have already started to reappear. It won’t be long before my hair also comes back to life.

It was good to be doing something kinda normal again. The last time I visited Daniel Galvin, my hairdressers in London, it was a few days before my massive cancer operation. I had a cut and a bouncy blow dry. I wanted to go into hospital with it looking lovely. I’m sure the surgeons appreciated the effort.

My friend Angela has been cutting my hair ever since I moved back to Britain. When I was abroad I had plenty of bad hair days – it had been “accidentally” dyed orange and subjected to many dodgy styles. Angela helped to nurse my hair back to good health. It was finally in great condition and I really liked how it looked. Now I was getting her to chop it all off.

As Angela set to work, she kept checking that I wanted it all gone. I certainly did.

Here come the clippers

It’s taken me months to feel okay about losing my hair. Compared to what I’ve been through it shouldn’t have been a big deal but it was. It’s bad enough to have to fight a killer disease twice. I didn’t want to have another Sinéad O’Conner. However, I slowly got used to being a skinhead again.

Sitting in the busy salon with my tufty mullhican I wasn’t upset or even embarrassed. I was ready for my new look.

I’d thought I was going to get a baldy head, all smooth and shiny. I was worried that I was going to look awful. Instead Angela gave me a number three all over. I managed to avoid getting a close shave. I’’m really happy at how it turned out.

Hey cancer – look – I still have some hair!!!

Tah dah!

Before the drastic cut, I was scared to touch my hair because it would just fall out in my hands. Strands of the stuff got everywhere. It’s now very very short but it feels thick and strong.

With my real hair sorted it was time to introduce Candice and Raquel. This was their first trip to the hairdressers. I needed Angela to work her magic on my wigs and she couldn’t wait to get her hands on them.

The trouble with wearing a wig is that it can so easily look fake. Like a lump of unnaturally big hair that’s been plonked on your head.

Angela, me and Raquel

After both getting a trim, they looked much better and a whole lot less wig like. Even so, I won’t be wearing them all the time. They’re far too hot and itchy.

I’m so glad to have finally got rid of the fluffy mullhican. It was actually making me appear a lot sicker than I was. I had started to hate what I saw. This was something that cancer had done to me.

I’ve taken back control and now when I look in the mirror I see a new start.

A letter to my cancer

Dear Cancer,

It was six months ago that we were reintroduced. I’d already got rid of you once and I can’t believe that you came back for more. This time I only had a fifty fifty chance of surviving. Like the flip of a coin. Well, heads I won.

After half a year of hell you are now just dust and dead cells.

You started out as ovarian cancer, if that wasn’t bad enough you took the liberty of spreading around my abdomen. It took a team of surgeons the length of an average day at the office to remove all visible traces of you. I imagine that the tumours have long since been incinerated. All that’s left is an awesome battle scar.

The next step was to kill off any lingering reminders of you. I had chemotherapy to destroy the teeny tiny cells that couldn’t be seen. On Wednesday I’m having the last of my six sessions

Like a coward you left me before the chemo had even finished. Repeated blood tests show that you are no more.

I’ve not just beaten you; I’ve proved just how much I want to live. My body hurt so badly when I woke up from the operation that I thought I was dying. I wasn’t.

But the drugs to deal with the pain almost killed me. They lulled me into a deep sleep. I quickly slipped into a happy bubble of unconsciousness and stopped breathing. I was only a few minutes away from my own death. But I fought back.

I wish I’d never met you. Okay maybe that’s only partly true. In many ways you’ve changed my life for the better. During the cancer treatment ten years ago I came up with a big list of things I wanted to do. Afterwards I went out and chased my dreams. The reality was even better than I dared to hope for.

So why did you come back? I thought we were done. I really didn’t need another reminder that life is precious.

When I was in the process of being diagnosed the second time round someone who should have known better suggested the cancer could be terminal. It wasn’t. She told me this devastating news over the phone. I was sitting on my bed on top of my pink stripy duvet at the time. As I cried my life didn’t flash in front of my eyes. Instead I saw images of my future, of what I was still to achieve.

I’m so angry that I’ve had to put almost everything on hold. Hey cancer – in a few hours I get my life back.

Over the past few months I’ve done everything I can to annihilate you. I’ve been having the maximum strength chemo cocktail. It’s been a marathon of pain, sickness and complete exhaustion but I haven’t considered asking for a lower dose.

Chemo has so many petulant demands. It wakes me up in the middle of the night. The poisonous chemicals make me run to the bathroom to throw up. I have no eyebrows now and only six eyelashes. I’ve watched my lovely hair fall out, there’s just a thin covering left to go. Then there have been the bugs, bacteria and infections. I never expected to have an emergency stay in hospital.

And yet, you haven’t managed to break my spirit. I’ve even been able to do some things which I thought were virtually impossible. Just days after my last chemo I managed to get to the Olympic Games. When the cancer treatment is over, I won’t collapse in a heap at the end. I’ll be flicking the V sign at you as I cross the finishing line.

Don’t worry, I won’t forget about you. How could I? There will be tests and scans every few months. When I go to hospital for the results I won’t be able to think about anything else. You’ll be constantly me on my mind.

However I refuse to be scared of what hasn’t happened. Because of you, I appreciate every moment. Well almost every moment. And so because of you I live.

I’ve now beaten you twice. TWICE. I want you to know that if you come back, I will beat you again.

Goodbye stupid cancer.

Helen

Just one more

Exhausted, so exhausted. But also I was slightly excited that I managed to make it through chemo number five. The end of my cancer treatment is really in sight now.

For the previous sessions friends have come over for a chemo coffee on the ward with me. I was too ill for that this week. Although I did have a cheeky chocolate muffin before it started. Then all I could do was to lie in bed.

Not only do I want this to all be over but so do my veins. They’re beginning to give up on me and I don’t blame them.

They appear normal but once a needle goes anywhere near them they seem to disappear. During my emergency stay in hospital last week, it took three people to get just one blood sample and some rather spectacular bruises.

The chemo is delivered via a needle that has to stay in a vein all day. My evil chemo cocktail is so toxic that the nurses wear gloves when they’re handling the bags of liquid. If the drugs escape from my veins into the surrounding tissue this could be really dangerous. So the nurse has to hit a good strong vein.

One way that I cope with this is to play the alphabet game. I look away from my arm and silently name countries of the world from A – Z. Usually I get to Egypt or France. These days I end up in Kazakhstan, Libya or even Mexico.

And that wasn’t the only pain. I’ve been persevering with the pink cold cap. The hat with a rubber lining that’s frozen to -5c and helps to stop you from going bald. I love my new wigs but I’d still rather have my own hair even though it’s very thin now.

Of course the more exposed your scalp is, the colder your head gets. Normally the frostbite feeling gradually subsides but not this time. This time it hurt so much. After two hours I couldn’t stand it any longer. I gave up.

So that’s it, there’s no real chance that I’ll keep my hair. It was a sad moment but I was too tired to get upset.

That’s the best thing about being so shattered all the time, you don’t have the energy to worry about much. You just focus on getting through each day. When I had chemo before, it was this period between the fifth and sixth session that I found the toughest. It seems like your body is screaming at you that it can’t take any more of the poison and yet you know there is still one final dose to go.

Since the chemo on Wednesday, all I’ve done is sleep. Mostly just waking up to be sick, take tablets and eat. My life is almost completely on hold but I’m hoping that the Olympics will help me to feel a little bit better.

Before I was diagnosed with cancer, maybe before I even had the disease, I got tickets for London 2012. This Sunday I should be there watching show jumping and basketball but the Sunday after chemo is normally my worst day. However I’m determined to make it. Even just for a few minutes.

Not only that, I’m going to wear one of my new wigs for the first time. While I won’t be going for gold, I’m quite looking forward to being blonde and proving that I won’t be beaten by the chemo.

Back to my old self

I have a hot date later today! 

I’m feeling both nervous and excited. By all accounts this man has made countless women very happy. I’m hoping he’ll do the same for me.

No, this isn’t George the doctor from the other day who made my healthy heart flutter. The person in question is the hospital’s wig-man. It’s time for him to sort me out.

I need to choose my NHS wig. I can only do this at hospital. Today I’ve got more breath tests plus the usual pre-chemo stuff.

My hair has been slowing thinning rather than falling out thick and fast. Sadly the bald patches are getting bigger. My comb-over is getting higher.

It’s incredible that my hair has lasted this long but I reckon that soon I’ll have to shave my head.

I want to get my wig while I’m still feeling kinda okay. Due to the relentless build-up of the toxic drugs I’m worried that in the next few weeks I’ll feel so horrendous I won’t want to get out of bed most days.

My wigs have been locked in a hospital cupboard just waiting for me. I picked out a selection from a catalogue a few weeks ago. I now have to fit them on and decide which one I want. They all look pretty much like my hair used to.

There weren’t many that I liked. It seems that the world of wigs is stuck firmly in the 1980s. If you want to look like Princess Diana then you’re in luck. I’m hoping that my wig will be more Duchess of Cambridge.

The hair may be taking a while to come out but the chemo really must be working its magic as my eyelashes and eyebrows are disappearing. I can disguise these with make-up. The loss of head hair is harder to hide.

I still have Barbarella, the blond bombshell of a wig, on stand-by so why do I need an NHS one?

As I start to feel more and more tired, my confidence is quietly ebbing away. I’m not really sure that I could pull off the Barbarella look every day. In the past it would be no problem. I’m quite outgoing, well I was. Since being diagnosed with cancer I don’t always have the energy to be the person I used to be.

It’s ironic that it’s going to be easier to wear a wig that makes me look how I used to even if I don’t always feel like my old self. But the chemo won’t last forever. In a few months, I may be bald but hopefully I’ll be feeling a lot more like I want to be Barbarella.

Diary of a chemo girl

I’m still so deliciously happy at properly getting rid of the cancer.

Yesterday I had more chemo as it was back to the business of keeping it beaten. Today I’m feeling oh so incredibly sick. I still have a few more months of treatment to go but at least I’m now officially half way through!

To celebrate here’s a blow by blow account of what I go through every three weeks. There’s much more to it than having a bunch of nasty drugs…

Tuesday 19th June – Preparing for chemo

9am: Wash my hair in tepid water so that it’s ready for the frozen hat on chemo day. Depressingly loads of it comes out.

10am: Start drinking.

Sadly it’s only non-alcoholic. I need to make sure I’m not dehydrated. Apparently it’s good to drink milk. What’s better than milk? Chocolate milk.

11am: Hypnotherapy at hospital. Once again I go to my imaginary tropical island and somehow it appears to work. The bad but bearable leg pain that I constantly get seems to go.

Lunchtime: Rest at Maggie’s Centre. It’s a beautifully modern building in the grounds of the hospital. Run by a charity, it’s for people dealing with cancer. I curl up on the big sofa in the living room.

2pm: Get a taxi to a different hospital in another part of London. We drive past BBC TV centre. I really want to stop the cab and go to work. I could be starting a late shift rather than another round of medical appointments.

2.30pm: At the chemo unit I get given a pink laminated card and wait for blood tests. It’s like a speedy boarding pass and means I can jump the queue. The tests will determine if I’m well enough for the horrible treatment.

The man taking the blood tells me I have chemo veins. They’ve gone into hiding but he manages to hit one first time. I accidentally watch as he wiggles the needle and then plunges it deeper into my arm to make the blood pour out. It’s pretty gruesome but I don’t actually feel anything.

3pm: Appointment with my lovely consultant, the Professor. As I wrote in my last post, he gives me all sorts of brilliant news, a big hug and sends me on my way.

4pm: My friend, Chantal the flower girl gives me a lift home in her big flower van.

On the way to my flat she has to make an emergency delivery.

5pm: Ring the hospital. Happily the results of the blood tests are good so chemo will go ahead. Rest on my own sofa.

10pm: Start the steroids. I have to take ten of these tiny tablets. They stop me from being sick but they make me feel wired.

Midnight: Still awake. The steroids also make me eat peanut butter on toast and ice cream.

Wednesday 20th June – Chemo day

7am: More steroids. Another ten tablets and I’m wide awake despite only having about three hours sleep

10am: Back at the hospital, this is where I have to sit. All day. I share the room with five others.

10.30am: I cover my hair in conditioner and the chilly hat goes on. My hair has to freeze before the chemo can begins. It hurts like hell.

A nurse puts a needle into a vein on my left hand. I’m attached to a drip that will deliver the anti-cancer drugs. First though I’m given even more steroids and other clear liquids to stop nausea, pain and any allergic reactions.

These make my face feel funny, like I’ve drunk too much vodka. As the dizzying drugs race around my body, I start to get a puffy face.

11.20am: The chemo finally starts. It’s so toxic that my nurse use gloves to handle the clear plastic pouches. I have two types of chemo, this first one takes a few hours to slip into my veins.

I have to wear two wrist bands. White to say who I am. Red to make it clear that I have a drug allergy. That’ll be the drug that almost killed me after surgery.

11.30am: Listen to my chemo mix tape and attempt to sleep in my chair under a white hospital blanket. I feel so tired and cold.

2pm: A friend comes over for a chemo coffee. She brings a big bag of sweets. I’ve eaten so much cake, chocolate and sweets since I started this treatment. Opps!

2.30pm: I get the second type of chemo; this is the most dangerous one. It makes your hair fall out among other awful things.

3pm: Sleep. As I drift off I try to dream of Daniel Craig and his army of James Bond cancer killers. But instead I keep thinking of the fantastic things I’m going to do when all this is over.

4pm: The last drugs pouch is empty and all the evil of chemo cocktail is now in my body. I’m unhooked from the drip. My hair is frozen to the cold cap so it has to stay on for a bit to allow it to warm up.

4.30pm: I have to go for a chest x-ray. Walking just a few metres makes me breathless so The Professor wants to make sure it’s nothing serious.

5pm: The flower girl picks me up and I start the long journey back to the house where I grew up. My hair is still defrosting. You don’t have to look too hard to see one of my bald patches.

I don’t feel too bad considering but the side effects of the chemo are like a time bomb and you never know when they’ll go off.

8.30pm: Still feeling kinda normal as I arrive at my parents’ home in the countryside.

I know that I may not lose my hair.

But I don’t quite believe it so again I’ve packed Barbarella just in case.

Beaten cancer, definitely

It has to be the best day I’ve had since this whole horrendous cancer nightmare began.

Yesterday was pretty perfect. I should have written about it last night but fatigue and a certain England football match, not necessarily in that order, got the better of me.

I have my third session of chemo today which will take me to the halfway point of my treatment so I saw my consultant yesterday afternoon. Let’s call him The Professor. Now he isn’t any ordinary consultant. He’s very senior and not only that he’s also one of the leading experts in the country on my kind of cancer. To me basically he’s God.

And he was able to tell me that I really am going to live!

We already knew that every bit of the cancer which could be seen by the surgeon was removed from my body. The pea and all his uninvited friends are long gone. After starting chemo a few weeks ago I had a very important blood test. It was to establish if any cancer was still lurking inside my body. Or more worryingly if it had come back since the big operation.

The Professor beamed at me as he delivered the incredibly wonderful news. The killer disease has been successfully treated!!! This is offically the second time that I’ve beaten cancer. You could say it’s Me 2 – 0 Cancer. I now need to think about changing the name of this blog.

For anyone interested, my CA 125 is now 10, well within the normal range and way down compared to when I was diagnosed.

A wave of relief and joy and surprise swept over me. I’ve been totally focused on the chemo and I’d forgotten that I was due the result of this test. It was an amazing moment. This confirms that I definitely no longer have cancer.

After some very happy swearing I opened my notebook and started to go through a list of questions I wanted to ask about the chemo. It’s the kind of pad that I’d normally use for work. Now I use it for this job.

We spent ages taking about the terrible side effects – mostly the pain and the tiredness. There’s not a lot that can be done about the exhaustion apart from resting.

But The Professor who speaks with a slight Scottish accent did have some more good news. This time I don’t need to have the dreaded post-chemo injection to boost my immune system as it’s still quite strong The jab gives me the worst pain. Ever. Without it I’ll be able to cope much better with all the other stuff.

There was one last question.

“What about my hair?” I asked The Professor. “Shouldn’t it have fallen out by now?”

“I was going to say the same thing. How come you still have so much?” He replied with a smile.

I ran my fingers over my scalp and a few hairs came out but not many. He thinks that I could be one of the lucky few to not lose all my hair thanks to the freezing cold hat that I wear during treatment. If it doesn’t all disappear by next week, then I really might not go bald.

On the way out The Professor gave me a massive hug. It was a great day at the office for both of us.

Becoming Barbarella

As I don’t have a proper wig yet, Barbarella is on stand-by.

Barbarella is a massive long blond wig that I wore to a friend’s fancy dress party last year. I could never have imagined that just over six months later I might have to wear it for real.

The fake hair came with a 60’s style zip-up dress. The outfit was supposed to transform me into Barbarella as in the science fiction flick.

It didn’t quite work out like that. (That’s why this photo from the party is just a head shot!)

Incredibly though I still have hair.

I thought I’d be bald by now. The chemo should have seen to that a couple of weeks ago. Instead as I write this I have almost a full head of really greasy hair.

I’m still following the advice of the hospital’s wig man. To try not to wash it very often, to preserve what’s still there. I can’t even put it up or do anything that would encourage it to fall out. That includes using dry shampoo.

Please don’t tell me that after a while it starts to clean itself. If I was backpacking around Thailand then I wouldn’t mind trying out that theory. Going through treatment for cancer with skanky hair is a whole different matter. I can safely say that after more than a week, my hair does not self-clean.

It just continues to fall out in great big handfuls especially on the rare occasions that it is washed.

My hair is thinning but I must have so much of the stuff normally that you can’t really tell. Well apart from a bald patch that I can cleverly disguise with a comb-over.

I reckon that it’s just a matter of time before I have more bald patch than comb-over. When that happens I’ll get it all shaved off. I have to say I’m feeling a lot more relaxed now as I wait for that moment.

I won’t get my NHS wig for at least another week and I don’t want to buy any wigs until all my hair is gone. So if I do have to become Barbarella anytime soon then I’ll be happy to be blond but I certainly won’t be wearing that silver dress again!

Wigging out

 

Waiting for chemo round two to start and to get my new look

This is where I expected to say something along the lines of… I got my NHS wig today. Hahaha it so was hideous, I’ve been transformed into a 1980′s soap opera super-star. Get a load of the pictures below.

But there are no photos as I didn’t get my wig.

This morning I woke up to find a halo of hair on my pilliow. It looked horrendous.

But I was told at hospital later it’s likely that it’s not falling out, it’s just thinning. Maybe I’ll get to keep most of it after all.

So I spent 6 hours wearing the special freezing hat to cool my scalp and attempt to save my hair.

Again it was excuriating. My forehead felt like it had frostbite to start with. At least this time it was a bit of a better colour.

The NHS wig man came in with a selection of wigs for me to try on. He proudly took one of them out of its box and it didn’t look too bad.

He agreed with the nurses that I don’t need a wig, certainly not yet anyway. They’ve all been left at hospital. I’ll be able to try them on during my next chemo session in three weeks.

They’re locked inside a cupboard on the ward. If I suddenly lose my hair then I can quickly go to hospital for some emergency hair.

Despite the icy headwear, I actually quite enjoyed this round of chemotherapy. At times it was even fun although I’m not sure I’m supposed to say that.

What made it different? Was it the hypnotherapy? Maybe that was part of the reason. It was certainly less painful.

I think though it probably had more to do with the great company. Okay and the cake they brought me. Also we were able to watch a film. Sorry James Bond but while you were busy killing any cancer cells, we were watching Batman take out his enemies.

The evil chemo cocktail slipped easily into my veins. You have various pouches of clear liquid. I was surprised each time that the machine started beeping to say the current bag was empty.

The chemo is light sensitive and it has to be hidden in what I think looks rather like a ‘modesty’ bag.

I reckon it wants to be covered up as it’s so bashful that it could well be saving my life.

After feeling good all day, the side effects from the contents of that bright bag haven’t yet kicked in. That will take a few days.

This time I’m even more prepared. I have my hypnotherapy trances to practise and stronger painkillers. Hopefully it won’t be so awful.

Hair today but not long now

Well it’s still here. Mostly.

My hair is now falling out ever so slightly. It’s hard to work out if this is normal and or down to the evil chemo drugs. I know it’s really the later but I’m trying to pretend otherwise.

Just because I lost it all once before it doesn’t make the prospect of this happening all over again any easier.

Through a fog of chemo pain and tiredness I’ve been thinking a lot about my hair. We’ve been through a lot together. I’ve realised that it’s the bad hair days that mean the world to me. And some of them were truly horrific!

It was ten years ago that it last fell out thanks to cancer. Back then, inspired that I had a second chance at life I came up with a list of things I wanted to do once I was better. It was my list for living.

One of the things was to live abroad. Not long after my treatment ended I set out on my big adventure. I was still bald, so me and my wig moved to Moscow to work at the BBC bureau.

A few months and an inch of re-growth later and I ditched the wig. I unveiled my brand new hair at a New Year’s Eve party.

The temperature that night in the Russian capital was about -30. You can see why I’m already well-practised at having a freezing cold head.

Also on the list was working as a foreign correspondent. I was doing just that in Estonia when I thought that my hair was long enough for its first cut.

A friend was helping me translate. Unfortunately she didn’t know how to say, please don’t make it a mullet.

I was beginning to understand that bad hair dos were part of the experience although it couldn’t prepare me for my next hair don’t.

A year or so later and I’d been working like crazy covering the mass protests of Ukraine’s Orange Revolution as the BBC’s Kiev correspondent when I decided as a treat to get my hair dyed for the first time since it’d fallen.

I went in for subtle highlights. I left with bright orange hair.

There was no time to have it corrected properly because a big story broke while I was still in the salon. I had to leave before it was even dry. A few days later and still in shock I got it toned down.

It was with trepidation I got my hair cut and coloured in all sorts of places. It was never quite that awful again although I have blanked out an encounter with a hairdresser in Kosovo who had a very liberal attitude when it came to peroxide.

Now I’ve had to have my long hair cut short. It’s an attempt to stop it all falling out. Apparently it was putting pressure on the follicles. I got it chopped at the hairdressers in the village.

All those memories from my foreign adventure were left in a heap on the floor. I picked up some of locks and stuffed them into an old envelope.

I’m not sure what I’m going to do with them but I didn’t want them all to be just swept away.

I have to do everything I can to encourage it not to fall out. That means I have to avoid washing and brushing it too much. Then maybe I’ll only lose some of it.

So I’ve got a short bob now. I’m getting used to another hairstyle that I didn’t want. But I’m not sad. This symbolises another important stage in my life – beating cancer again.