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 20^th 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.

Heads up

I might not need to just yet but I’ve taken to wearing a headscarf.

Right now it’s more to hide the greasy hair that I’m not supposed to wash and to stop it from blowing away in the wind.

Luckily I’ve already got plenty to choose from. One of my flatmates is a fashion designer and thanks to her I’ve managed to build up quite a collection.

They also keep my bald patches properly covered. Since my last post I’ve discovered another one near my fringe.

I’m actually quite enjoying wearing headscarves. They remind me of being back in the former Soviet Union. Over there they’re much more popular.

This is one of my favourites. It was bought from a stall in a Kiev underpass. For my Moscow friends, I’m sure you’ll agree it’s one that Masha Headscarf would be proud of!

I’ve realised that there’s an unexpected silver lining to all this headscarf wearing. It’s not that I’m being stopped in the street to read a few palms.

No, wearing a headscarf has a kind of cancer chic to it. I think it makes me look a bit more like I may be sick.

Don’t get me wrong, it’s not that I want to appear like I’m going through cancer treatment. It’s just that right now I’ve got the opposite problem, I have plenty of hair and a rosy complexion and so I look well.

For the most part this is great. But I’m easily the youngest patient having chemo. Even mum is younger than most of the patients. I don’t think that at hospital I’m always seen as someone who’s very ill.

Looking fighting fit when you feel like rubbish has other difficulties. The chemo means my immune system is pretty pathetic and I should avoid public transport. On the odd occasion that I do get a bus or a train I really need to sit down.

Most people do move if you ask them but it would be much easier if I didn’t look so healthy. I don’t have the energy to explain to random strangers sat in the priority seats that I’m having treatment for cancer.

You can already get “baby on board!” badges, I’d like to one that says something like, “cancer on board!”

Or perhaps to be more accurate, “I might not look like it but I’m having chemotherapy and still recovering from major surgery so please let me have your seat as I’m so exhausted that I might collapse at any minute.”

Not sure that would all fit onto a badge so instead I’ll be sticking to the headscarves.

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!

Diamond advice

I was all prepared for the pain that follows chemotherapy. I’d been hypnotised. I’d been given a white paper bag full of pain killers at hospital.

I’d even bought boots stuffed with wheat that you heat in the microwave.

But did any of this do me much good? Not really.

In the days after my last cancer treatment, the pain steadily increased. Chemo makes your joints hurt. Plus I had to inject myself in the thigh to boost my immune system. It helps the bone marrow to produce the all-important white blood cells apparently. It meant that the bones in my legs ached so badly, especially at night.

But when it came to it, I was too scared to swallow the super strong painkillers.

I know they probably would have done the trick but I think that I’m still traumatised by what happened in hospital. How close I came to dying. When I stopped breathing after having an allergic reaction to a drug to relieve the pain after surgery.

Now I was faced with taking something similar. So I chose pain.

Constantly being in agony changes your personality. A few days on from the chemo, and I was finding it hard to even talk about the pain without crying.

Then thanks to the Diamond Jubilee things changed. A bank holiday visitor came bearing a cake topped with red, white and blue icing and some simple advice. I shouldn’t just accept it. I needed to sort out the pain.

It made me realise how I’d become a shadow of myself. Willing to accept a situation that in ordinary life I would have considered unacceptable. So I made a phonecall and with the help of a chemo doctor, I changed my medicine once more.

Within an hour my body relaxed. That night I fell into a long, soft sleep. The best one since the last evil chemo cocktail.

Trying to get some rest at night has been hard. It seems like sleep fights you. Eventually, exhausted, you doze for a matter of minutes. Then the pain screams at you again and you’re awake.

Now all I have to contend with is a whole load of tiredness. And that is lovely. It’s a side effect that’s easy to deal with.