Chemo#13

I quite like Mondays. It’s the start of my super short week. I’m now so incredibly tired that my week only lasts for two days. Basically I feel sort of normal on Mondays and Tuesdays, and then the treatment begins again. Weekly chemo feels relentless. I’m spending most of my time in bed. I just want it to end. Last week it nearly did.

A couple of days before I was due to have chemo#13 I thought something I hadn’t thought before. For a few brief moments I decided that I didn’t want to continue.

I felt so ill and frustrated by the horribleness of it all. It’s not just the toxic drugs that are so awful but all the other stuff too. Last week I spent around 12 hours over three days at hospital with scheduled appointments, procedures and tests.

When I woke up the next day after the wobble, my symptoms seemed to have faded a little. I wasn’t so exhausted and I knew that really didn’t want to end it early. Even so I came up with a list of pros and cons. I realised that there is only one thing that matters, it’s first on the list and outweighs everything else.

CHEMO PROS

*It’s hopefully helping me to live longer

*Chemo makes me feel that I’m doing something to fight the cancer

*Somehow it makes my skin glow. I know this is totally ridiculous but everyone tells me that I look really well when I actually feel so ill…

CHEMO CONS

*Extreme fatigue, most days I’m close to collapsing

*Lots of random pain all over my body, especially in areas that I’ve had surgery

*Fingernails and toe nails hurt and feel like they’re going to fall off

*Fingertips are a bit numb, meaning I’m clumsier than normal

*Painful pins and needles in my feet and hands

*Breathlessness, I can’t really walk and talk

*Painful to walk and I can’t exercise like I used to

*It’s making my hair fall out

*My eyes are watery and sticky as I only have a few eyelashes are left

*Constant bleeding nose

*Comprised immune system and I could end up dangerously ill if I get an infection

*Steroid induced mood swings

*Insomnia

*Disgusting taste in my mouth

*Dizzy spells

*Bloating

*Always starving thanks to steroids

*Chemo weight gain

*Mouth ulcers and sensitive teeth

Now that’s some list. The treatment is truly horrific. You need to be totally convinced this is what you want. I am but it doesn’t stop me from sometimes pretending that it’s not happening.

Before chemo#13 started there were lots of things I had to do at hospital. They required me and mum to navigate the confusing corridors which link the mass of buildings together. On our way back to the ward we made a break for freedom!

Instead of following the signs we left the hospital for an outdoor detour. The morning sun warmed my skin and I felt amazing. For a moment I wasn’t a patient. I was someone out for a walk with their mum, trying to convince us both that we weren’t lost.

As we weren’t that lost, it was soon back to reality. It was the first time I’d faced the toxic drugs after questioning whether I wanted to carry on. As I was hooked up to the drip I knew I wanted to continue.

Some people have been in touch with me on the blog to say that their elderly relatives are refusing to have anymore chemo and they don’t know what to do. I can only really talk from my own experience.

For me the most important thing is being able to have a good quality of life. Aside from the cancer, I’m a fit and healthy 41 year old. I feel very resilient. Despite the long list of chemo cons, I’m lucky that my body is capable of withstanding the treatment and I’m coping well. However, I know that I’ll probably need more and more evil chemo cocktails after this course finishes and in the future I may feel differently. There may come a point when I decide that I’ve really had enough.

This is such a personal decision. I’m convinced that I’m doing the right thing. I feel that I have so much to live for. Whatever it takes, I’m going to make it through the remaining five sessions of chemo.

Chemo#9

It was a room without a view but I wasn’t complaining. Once again I’d been upgraded. I had my own private room. It came with a bed and an isolated sense of calm. Stark and clinical, it was such a contrast to the country pub where I pulled a pint from my List for Living, a few days ago.

I knew I was in for a long afternoon. My magnesium levels have got so low that I needed to go on a drip of the stuff for two and half hours before I could even start the anti-cancer drugs.

Luckily I had company. My friend Keith came for chemo coffee although it turned into chemo coffee, lunch and tea. He was well prepared. With sushi and sandwiches and cream cakes, he laid on a hospital bedside banquet.

When I’d walked onto the ward earlier, I hadn’t really looked at the other patients. In my little room, Keith kept me entertained with a laptop stuffed with movies. It felt like a lovely lazy afternoon albeit in slightly strange surroundings. I could almost pretend that I wasn’t being pumped full of poison. Normally just being there, surrounded by sick people and all the medical equipment means that you focus on the cancer. It’s hard to avoid it.

Yesterday I also had a visitor – a fellow patient from my previous lot of treatment last year. We had got to know each other quite quickly as most of the other people at hospital are about twice as old as us. My chemo sister is totally fab-u-lous. She is positive but pragmatic and ensures that she looks amazing at all times. Something that takes an admirable effort.

My chemo sister came to see me with something sweet. A sparkling chocolate cake that she’d baked herself. Me and my steroids were very happy to be taking home that beauty.

By the time I was unhooked from the drip, the ward was almost deserted. My session at the chemo cocktail bar had left me a bit dizzy and almost like I was drunk. Probably thanks to the pre-meds.

I also felt surprisingly well. I reckon that was mostly because of my afternoon with friends and the chemo-cake-therapy. Despite the hours of treatment, it had been easy to forget about the cancer. Sometimes a little dose of denial isn’t a bad thing.

Chemo#7

It’s not quite what you expect to see but there to greet us at the entrance to the chemo unit was a bird of prey. It wasn’t long after lunch and the kestrel had just killed a vole in the hospital car park.

Like the bird, I was about to do something pretty violent, in my own way, in order to survive.

Rather than feeling squeamish, I enjoyed seeing such a powerful creature. It seemed like an inspiring sight just before chemo#7. I didn’t realise why until I did a little research while waiting for my chemo cocktail to be mixed up.

Some people apparently see the kestrel as a warrior or a warlike symbol and in battle they use its image believing that it gives them prowess. The bird represent success, victory and rising above a situation.

Wow – I’ll take all of that thank you very much.

The skill of the kestrel is to hover in the air, locate its target and then choose the right moment to strike. According to a mystic on the internet, they are all about focus. When you see one it’s a sign that you should focus on your goals and do what’s necessary to make your desires become a reality.

The bird’s timing was perfect. I’m now entering probably the hardest part of my treatment. The side effects are getting worse and yet it seems like there’s no end in sight to the chemo sessions. Still 11 to go after this one. Even if none of the kestrel stuff is true, it was lovely to see something so special.

It was almost a relief to get back to the business of fighting cancer. This week has been a nightmare thanks to the actions of one person. I don’t even know if they are a man or a woman but The Idiot has caused me lots of trouble. And yes, they know that I have cancer.

I have wasted hours worrying. I even spent a whole day of my precious life just crying in bed. This big stressful thing has come along just when I really don’t need it. I won’t go into details as it’s complicated and I’ve had to explain it far too many times.

The day before chemo I didn’t put on much make-up as I knew I’d probably end up in tears. Ahead I had some horrible hospital tests and the prospect of throwing away huge chunks of time on the phone because of that big stressful thing.

I decided to base myself at Maggie’s Cancer Care Centre. It’s a place offering coffee and support. It’s right next to a hospital but it doesn’t look or smell like one. There are a number of Maggie’s Centres around the country, mine is a beautiful oasis, designed by a famous architect. I was hoping for some friendly words of advice and perhaps some cake. I got that and much more.

make upI was already on my phone talking about the actions of The Idiot when I walked into Maggie’s. I could see that one of the staff wanted a word with me. Once I’d finished my call, I was asked if I wanted my make-up done by a professional. Oh, let me think about that for a few seconds.

The make-up session at Maggie’s was only interrupted twice by my mobile and that big stressful thing. However getting some smokey eyes certainly relaxed me.

Later when I ended up sitting in a hospital corridor with only a couple of cotton gowns to cover my dignity, I looked a lot more glam than usual. I continued to take yet more phone calls relating to The Idiot but I felt stronger. Thanks to some very lovely people, hopefully it’s being sorted now.

From the random make-over to the magnificent bird of prey, life didn’t seem quite so bad. Then during treatment I got an upgrade from chemo club class. I didn’t have to sit in a big pink chair; I had a proper bed in an en-suite room.

Perhaps I got the side room as I was living dangerously. Once again I had opted to cut my steroids. Now I’m on a quarter of a dose. Reducing them before didn’t give me any problems. Mum and my friend Chantal, the flower girl, kept an eagle eye on me. But it was fine. I just slept in the comfy bed covered by a thin blanket.

I dreamed of the kestrel. My warrior bird of prey hovering in the sky, waiting for the perfect opportunity to swoop on my tumour. Attacking it and killing the cancer.

Normally I focus on 007 doing my dirty work. Could it now be a case of move over James Bond there’s a new bird in town?

Chemo#4

It’s not even Valentine’s Day but already I’ve been struck by chemo’s very own Cupid’s arrow. There’s now something very close to my heart. I’m the proud owner of a PICC line. For a cancer fighter like me I’m going to get a whole lot more pleasure from it than a dozen red roses.

It’s become just too painful to have needles forced into my hand every week. The veins on my hand are difficult to find at the best of times and the chemo is making them worse. To solve this problem I’ve had a permanent line put into my upper arm where the veins are a lot more juicy.

I went to get the PICC line the day before treatment. Simple, I thought. I had to go into a side room of the chemo ward and it would soon be sorted.

Wearing a beautiful silk blouse, the hospital’s vein expert arrived for the small op. As she was wearing such a lovely purple top, how bad could it be? When she put on a blue surgical gown, I realised I’d lulled myself into a false sense of security. Even then I didn’t quite realise how gruesome it was going to be.

The consultant selected a big vein on the inside of my right arm. After some local anaesthetic she made an incision. A thin plastic cable more than 40cm long was inserted and gently eased into the vein in my arm. Bleugggh!

The tiny tube travelled through the vein up my arm, across my shoulder and then down until the tip was pointing right at my heart. There it will stay for months, until the chemo is over. The other end of the cable now pokes out of my arm but most of it is covered with a clear dressing.

It means that I can’t play netball, swim or have a proper bath. I can carefully shower but I won’t be able to have long hot showers. That’s a real shame. Showers are the perfect place for a good cry. Although I don’t seem to have so many emotional showers these days. I still get upset but I have far less of the raw grief that seems unstoppable. I guess that I’m coming to terms with my new reality.

The restrictions of this chemo Cupid’s arrow are a small price to pay. It’s lovely to say goodbye to the needles plus there’s no need for any more friendly threats to pinch me. The PICC line will be used for chemo to go in and blood for tests to come out. If I get an infection like before and have to go into hospital in an emergency, it can also be used for an antibiotic drip.

The next day and chemo#4 was a breeze. It didn’t hurt at all. Just like last time, I only had half a dose of steroids. It seems I’m not the only one who gets a rush from this medication.

I had a comment on my last blog post from a woman called Janice whose husband who was being treated for tongue cancer, telling me how the day after hospital he’d be out in the garden from 6am wielding a powerful petrol strimmer. She said he was as high as a kite and worked like a dog for two days and nights. Their garden had never looked so good!

The past week has been much better. No steroid high, followed by a crash and burn. Instead I felt good but incredibly tired. I was wiped out. Now I’ve lowered the dose my mood feels more stable.

As always once the drip started the chemo cocktail virtually knocked me out. My consultant, The Professor was visiting the ward. I saw him walking towards me but I didn’t recognise him until he spoke to me and gave me a hug.

I wasn’t much company for mum and dad who were with me for this week’s chemo. As always I couldn’t stop myself drifting off. As I fall into a deep sleep I love to imagine my tumour getting a good battering from James Bond.

On the way to my parent’s home I dozed on the train, again I visualised Daniel Craig, I have to admit it got quite violent. I think of the chemo as 007 licensed to kill my cancer. Normally he has the biggest, baddest gun. On this occasion he took me by surprise as he turned up with a rocket launcher! Good work Mr Bond.

Almost home and I woke up, still woozy from the drugs. On the opposite seat – someone joined me for the journey. I’m sure he wasn’t there before I went to sleep. There was something familiar about him and I did manage to recognise this man.

Chemo#3

I have a confession to make. The last two blog posts have been written under the influence. I didn’t realise it but both times I was on a steroid high. Chemo#1 and chemo#2 have gone something like this…

Tuesday – Have chemo along with a load of steroids to help my body cope with the toxic side effects. Tuesday night – Insomnia.

Wednesday – Feel so energetic that I go for a little run. I know. A run – the day after chemo! Wednesday night – Horrific nightmares followed by insomnia.

Thursday – Feel miserable.

Thursday night – Sleep returns to normal.

Friday – Wake up feeling like me. No high, no low, no desire to do any running.

On Wednesdays I felt amazing and was bursting with energy. The real problem was with that awful Thursday comedown. Both times it’s hit me hard and I have months of treatment to go. I couldn’t work out what was happening until I mentioned my mood swings to a doctor.

If I really needed to have so many steroids then I’d just deal with it but why put up with something that can be changed?

Red band spells steroid danger

Before I started chemo#3 I asked if I could get the moody drugs reduced. It caused a bit of a kafuffle. Not many people opt for this. Steroids are used to reduce this risk of your body from having a bad reaction to chemo; like that patient did last week. Apparently it’s rare but a really bad reaction can be deadly. Cutting back on the steroids was a gamble although the doctor on the ward preferred to call it a calculated risk.

I knew that my body copes well with chemo. Oh yes, it’s one of my hidden talents. But I still wasn’t sure and neither were the medical staff. In the end we agreed that I’d have half the usual steroids and be closely monitored.

If something scary is going to happen it will do so in the first 15 minutes or so. I wanted to be awake to watch and worry however like before, the chemo cocktail put me straight to sleep. I didn’t even have time to take my wig off. I was relieved to have my friend, Chantal the flower girl at my side.

So what happened? Nothing. I was totally fine and slept all the way through the critical period and beyond. I’m still writing this after all!

It was quite stressful though. Not exactly what you need. I’m trying hard not to turn chemo into a big deal. I want it to be just part of weekly life.

As I’m keeping everything normal I offered to work an early morning shift before chemo in the afternoon. Getting up at 4.30am wasn’t great. But that was the whole point. I was playing mind games with myself and it worked. My brain was more annoyed about the stupidly early hour rather than the prospect of chemo.

It was a busy morning at work doing live TV reports and interviews for the BBC News Channel. I didn’t have time to think about my impending trip to the chemo cocktail bar.

I can see why my consultants have encouraged me to continue to work if I’m able to. The morning made me realise more than ever just how important it is to do the things you really enjoy. It gives you a sense of purpose that you’ll never get from a trip to hospital.

Also work is a big part of my identity. I may have cancer but that doesn’t define who I am. Being active is another part of my identity which has nothing to do with the disease. Earlier I went out for some exercise. I used to be very sporty and I’m keen to get fit again. Playing netball again is on my List for Living which I’m still working on.

I think that I’m now having much less of a steroid rush. The insomnia wasn’t so bad last night. The steroid highs made me feel like I had boundless energy. Today I managed to jog for two and half minutes with great difficulty. It’s good not to feel so hyper but just happy, tired and rubbish at running again.

Huffing and puffing

I have a hot date later today!

Hmmm sound familiar? Well that’s because my wig-man turned up wig-less yesterday. Mind you it’s not the first time I’ve had a disappointing date.

He’s promised that today at hospital he really will come up with the goods. So I should get to choose my new fabulous wig. He knows that I want to be much more Kate than Princess Di. Plus he’s going to let me try on some WAG wigs.

I could end up with some seriously big hair. Hopefully.

As I prepare for the next evil chemo cocktail I perhaps should warn you that I’m writing under the influence of steroids. I’ve just taken a handful of the tiny drugs. They normally make me feel wired; right now they make me feel weird. In a good way, it’s like my face is drunk and I keep laughing. I think I’m going to need a disco nap before getting ready.

Anyway after I choose my fake hair, I’ll start chemo session number four. Yayyyy once I’m hooked up to the drip I’ll be two thirds of the way through!

And there’s some more great news.

This bad boy doesn’t let any air in

My breathless tests are now all done. I needed this pair of nose clips for the last one.

Yesterday I had to sit in what looked like an old phone booth, wear these and blow into a blue rubber tube. It was quite surreal. The woman putting my lungs through their paces stood on the other side of the glass door telling me when to inhale, exhale and pant. Yes pant.

The results from all the scans, the x-ray and the panting shows that everything is healthy. Both my heart and my lungs are normal.

It’s such a massive relief. I didn’t realise how worried I’d been. I’d feared that my breathing problems could have be caused by a dangerous blood clot, a killer disease or even more cancer. Instead it seems that it’s probably down to the fact that I’m still not recovered from the huge operation and the chemo could be making this worse. Once this is over then I should just get better.

It’s brilliant that I’m not seriously ill with something else and I only have the orginal cancer to deal with. I can now breathe easy.

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.

One down. Five to go.

Several big bags of clear fluid later and my first session of chemo is over. But let me rewind my nine hour day and show you how it started.

This is a photo of me taken just before the treatment. Pretty normal, if a little tired. But this picture is important as it might be my last with a full head of hair for some time.

Just before chemo kicks in

Sadly the toxic chemical cocktail didn’t come with an umbrella and a slice of pineapple on the side so instead I had a couple of friends over for chemo coffee. Mum was with me all day, just like before during my nightmare stay in hospital.

I thought about James Bond some more. I hope that the boys did the business.

The most uncomfortable part was the cold cap. A helmet of ice that helps stop chemo attacking the hair follicles, and can leave you with frostbitten ears if you don’t protect them. It was the most painful things and could only maybe prevent my hair falling out.

To add insult to injury, it didn’t even match my clothes.

The big freeze. Minus 5 degrees to be precise.

So how did I pass the time? Some chat, some sleep and some home comforts. Plus of course reading words of support from outside the four walls of the ward.

Morale boosters

Plenty of time to read messages

So far I’m not too tired or sick but I think that’s just the steroids talking. The evening they have also been shouting at me. The steroids made me eat a burger on the way home. Ha, so much for the healthy diet.

When they wear off then I’ll be left with the evil side effects of chemo. By that point I’ll be back home with my parents and back in my old bed.