Chemo number 78

It’s my last chemo. In total this is number 78. What a terrifying achievement. It’s both ridiculous and amazing that I’ve had so many of the toxic cocktails. They’ve made me horrifically ill and but also they kept me alive.

It’s been around 14 years since I was first diagnosed but it’s been in the last four years that I’ve had most of the chemo.

As you know I travel a long distance by train from my home in the Cotswolds to London for treatment. I quite enjoy the journey. It’s also easier to be ill on a train than in someone else’s car! Looking out at the countryside also helps to put things into perspective. 
The landscape looks so very beautiful. When you’re aware that your life maybe limited, things take on a new meaning. On these train journeys, when I look out the window, the colour of the land and the sky seem to be more vivid. Somehow much brighter. Like it’s being filtered though some kid of photo app. Or maybe I’m just noticing more especially after being cooped up at home most days. Whatever it is I’m glad that soon I won’t be having make this trip to get a big dose of toxic drugs. 

Don’t mind the gap year

There’s something missing. It’s winter, Christmas isn’t far away and I’m feeling really well. But there is a huge chemo shaped hole in my life.

I’m not complaining. It’s just so strange. I associate chilly weather with chemotherapy. Of having to wrap up warm to make the regular journeys to hospital. Coming home in the cold, feeling dazed and drugged up. It’s hard to remember a time when I wasn’t having treatment at this time of the year. When I started the last lot of chemo I was given wallet sized medical cards. I was told to have them with me at all times in case of a medical emergency. I no longer need to carry these. 

I thought I would have a chemo-holiday over the summer, then just like the past couple of years, I would be back on a toxic drip by the autumn. But I’m still on holiday! 

I reckon that the very earliest I will have more chemo will be January. It will mean that I have had a WHOLE YEAR without any treatment. This has now become my chemo gap year.

My cancer is considered to be stable. The disease hasn’t disappeared but it’s not doing much at the moment. Imagine this…. when I was first diagnosed my cancer was like a sports car. It had the ability to spread fast with little warning. Conventional treatment managed to stop it for a while but the engine was still revving away. Then last year I went on a clinical trial. This chemo has traded in my cancer. It’s gone from the sports car to a second hand banger. So thanks once again to these wonderful people.

http://www.bbc.co.uk/news/uk-wales-32917141

As this has been my longest period without chemo cocktails I feel amazing. Yes I still get tired and somedays I have to cancel plans just to lie on the sofa. Occasionally I can’t stop being sick. My magnesium levels remain shockingly low. But then I’ve have more than 50 sessions of chemo over the years plus plenty of surgery. You’d expect there to be some problems connected with all the gruelling things which have been done to keep me alive. However it’s nothing at all compared to how horrifically ill I’ve been.

Most of the time I feel really really great. If you’ve never had a serious illness, you’ll find it hard to understand quite how incredible it is to just feel well. Right now I’m lucky enough to have a pretty normal life. More than that, some amazing things have happened during my gap year. I cherish this time and the special people that I’m sharing it with.

My List for Living

Finally here it is.

There are no must-dos or should-dos. Just lots of love-to-dos.

Some people will call this my bucket list but I’m not a fan of that term. This is about living life to full while I can and not about focusing on the dying.

It was quite difficult to write as I don’t know how long I’ve got. I could get very sick soon and never properly recover. I might not be able to travel again. I wondered if I should have a short list but then I thought nah… let’s just put everything on it and see what happens.

The first five things are the most important to me. If I get to tick those off I’ll be happy. Doing all the other ones will be a bonus. After the top five, the rest of the list is in no particular order.

Deciding on what to do has been partly inspired by my original List for Living. That was the list of ten things I wanted to do after I was treated for cancer for the first time more than a decade ago. Back then I longed to live somewhere totally different. I wanted adventure, thrills and animal magic. To have a life without any regrets.

I’ve also been looking at other people’s lists. They’ve helped with ideas of what to add to my list. And what to leave off, like having a perm, trying balsamic vinegar and (this is one of my favourites) getting a pair of thigh high boots and wearing them without feeling like a hooker. I think I may have done those anyway!

Many of the things on my list are fun and quite easy. Others will be very hard to do. Some require me to live for a long time and prove the doctors wrong. A few are almost stupidly unattainable.

But I know that when I wrote my first List for Living it included dreams that I thought were practically impossible. The list led me to achieve more than I ever imagined. Now I hope that what will be my last List for Living will again give my life purpose with incredible goals to aim for.

Being told that your life will be cut short makes you realise what’s important in life. When you think about it, there’s not much that really matters apart from the people who mean the most to you. I’m going to do most of the list with family and friends. It’s a fantastic excuse for us to do amazing things and create some wonderful memories.

I may change the list or add more things to do along the way. My List for Living also has its own page on this blog so I can tick stuff off. Something I love to do and something I’ve already started. You see, I have a confession. In between compiling my list and writing this blog post, I’ve actually gone and done one of them!

Despite the speedy start, I’m sure there will be many items left that I don’t get to do. This is where my friends and family come in, again. I’ll be leaving the remainder of the list to them. I’d like them to take over my List for Living. To carry my dreams with them after I’ve gone.

 

My List for Living

1) Move to the countryside

2) Live in my own house

3) Get a dog

4) Play a netball game, again

5) Recover from chemo on a ridiculously perfect beach

6) See penguins in the South Pole

7) Go to Paris by Eurostar just for lunch (DONE!)

8) Visit Pompeii and drive along the Amalfi coast

9) Explore the ancient ruins in Rome

10) Snorkel on a coral reef

11) Trek in Nepal

12) Go to the 2016 Olympics in Rio

13) See the Northern Lights

14) Ride a camel across a desert

15) Drink a mojito in Cuba

16) See Stonehenge at sunrise

17) Go into space

18) Get married

19) Get my book published

20) Present a BBC Radio 4 programme

21) Hold an exhibition of my cow photographs

22) Do voluntary work

23) Run a 5K

24) Sky dive

25) Go gliding

26) Ride a horse through Hyde Park

27) Try kite surfing

28) Zoom down a zip wire

29) Surf somewhere hot

30) Go coastering somewhere cold

31) Take a speed boat down the Thames

32) Swing on a trapeze

33) Fly in a hot air balloon

34) Take a private jet over London

35) Fly in a stealth airplane

36) Be driven very fast around a race track in a sports car

37)  Sleep under the stars

38) Get a tattoo

39) Have a henna crown painted on my baldy head once the hair falls out

40) Grow my hair long, again

41) Be a model and work the catwalk

42) Learn to play poker

43) Pull a pint in a proper pub

44) Hold a party in a castle

45) Go glassblowing

46) See puffins in Britain

47) Swim with sharks

48) Sail alongside a pod of dolphins at sea

49) Catch fireflies in a jar

50) Drink champagne in one of the best bars in the world just before Christmas to celebrate still being alive.

My last chemo. Ever.

Whooo hoooooo! Finally it’s over. Yesterday I completed all my cancer treatment.

The day started well. On the ward you usually have to share a room with three or four others but I got to turn left instead of right as I was given my own side room. In the world of cancer having the superbug MRSA gets you an automatic upgrade.

My friend Tamsin came with me to the hospital. She may not be having chemo but as a surprise and to show her solidarity Tamsin wore a vivid purple wig. Normally part of a fancy dress witch outfit, it was almost like Halloween had come early! Seeing her fake almost florescent hair certainly helped to ease my anxiety.

As it was such a big day I wore my Candice wig for the first time. She’s reserved for special occasions and it was certainly one of those.

I’m still getting used to wearing a wig again. They’re quite hot and itchy even when you wear a wig liner over your head. My wig liner looks like a foot has been cut off a pair of American tan tights. It has a snug fit. Pull it down over your face and you look like you’re ready to do a bank job. After a couple of hours I had enough of the wig and ditched it in favour of a headscarf.

My friend Chantal, the flower girl spent the afternoon with me. She didn’t bring a wig instead she borrowed Candice. Seeing it on someone else was quite surreal. It’s such a massive WAG wig – I’m really glad I picked it!

I was so excited that after six months of treatment this was my last ever chemo. The hours seemed to speed past in a blur of coffee, cake and thinking about James Bond. It was his final tour of duty for me. Maybe one day I’ll be able to thank Daniel Craig for doing such a great job. Every chemo I have imagined that a whole battalion of Bonds were shooting the tiny but deadly cancer cells inside me.

As always I had several bags of cold clear liquid slowly dripping intravenously into my veins. Then at about 4pm it was all over. No more evil chemo cocktails. We punched the air with delight. I finally got to flick the V sign at cancer. I said goodbye and farewell plus other choice words beginning with F.

Now I had officially beaten this killer disease.

But I couldn’t go yet. The chemo is so dangerous that it doesn’t discriminate between the good and bad stuff in your body. It’s now destroyed my magnesium levels. To stop side effects like numbness and tingling in my hands I had one last bag of liquid to give me a magnesium boost.

By the time it finished it was past the opening hours of the ward. Some of the nurses had already changed out of their uniforms ready to go home. They didn’t look like medical professionals anymore. As I walked out I realised that they would no longer see me in the same way either. I had stopped being a cancer patient.

Outside the fresh evening air somehow seemed much more wonderful than normal. It was an incredible feeling to leave that chemo unit and know that I wouldn’t be coming back again to have my veins filled with poison.

Dad and I headed for the car park. We went past a small square of grass surrounded by wooden benches. This is where you go for a quiet cry. It’s what me and my cancer fighter friends call the garden of tears.

But at that moment I was full of joy. The days of needing this hidden green space felt like a lifetime away.

As we drove us back to the countryside, the sun was starting to set on what had been a brilliant day. The dazzling weather on the motorway home matched my mood. The sky was ablaze with dusky pinks and gold that stretched all across the horizon. Enjoying the view it suddenly struck me – now I’m really going to live.

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

What now?

The countdown is on to my last chemo. There are just days to go. I’ve dreamt about this moment for a very long time. I really don’t want to get ill and delay my final treatment. After this I’m done with the cancer. But there’s been a scary new development.

For the past week I’ve been in the danger zone. This is when my immune system takes a violent nosedive and because of this I’ve kept myself pretty much isolated from the outside world. Away from many of the everyday germs.

Following my last chemo I had that horrible hurty injection. It boosts your immune system but it makes you feel like you have flu and arthritis. I put up with the pain as I knew it would protect me.

When I had that really bad infection a few weeks ago I was advised to steer clear of certain risky foods so I carried on with this special diet. Salad, cold meat, milk that’s been opened for more than a day, yogurt, soft cheese, fruit and vegetables that haven’t been peeled and many others were on my banned list.

So I thought I’d be safe but I was wrong.

It turns out that I have MRSA. As in the superbug that kills hundreds of people each year, as in the bacteria that’s resistant to some types of antibiotics.

After my GP rang me with the news, the next thing I did was have a look on the internet. I know I know it was a stupid move. I was scared by what I saw but I did find this piece of advice: “The best thing to do is to avoid becoming infected with the bacteria.” Yeah, thanks for that.

Anyway, concerned by what I’d read I called one of my consultants. He put my mind at rest. I may feel overwhelmingly tired and have all the other horrible side effects of the chemo but I don’t have any of the worrying symptoms that would mean I have full blown MRSA. It’s unlikely to become critical.

Apparently many people have the superbug but most will never get ill from it or even realise that they have it. My case is a bit different so I’m back on antibiotics again. Plus I have a special pink shower gel which is stuffed full of ingredients with long medical names.

As long as the MRSA doesn’t turn into something serious before it’s sorted then I’ll be okay. My last chemo should be able to go ahead as planned.

Just as I’m so close to finishing my treatment I can’t believe that something else has come along but after all that I’ve been through I won’t let what is only a small problem get in my way.

Let it rain

What fantastic weather we’ve been having!

This afternoon I watched an angry rain storm drench the garden from the comfort of the living room. As the wind howled down the chimney I sat and enjoyed the show.

I’m too ridiculously tired to do much else. Mornings don’t really exist for me anymore. I sleep for at least 12 hours every night and still my limbs feel like they’re made of stone.

When it’s wet there’s nothing like being indoors and knowing that you don’t have to go outside.

Besides, now that the Olympics Games are over the bad weather is proving good entertainment. It’s still a couple of weeks before the Paralympics start. Even Sasha the dog is missing Team GB.

However cosy and dry it is inside, part of me would love to be out there going about my normal life. It’s amazing what you crave. Being stuck inside for so long means you lose touch with the elements. You understand just how much the weather makes you feel alive.

These days I’m never too hot or too cold. Unless of course I’m coming down with an infection. Sometimes if there’s a blustery shower I’ll put my wellies on and wander around the garden so I can feel rain drops on my face.

The first time I was treated for cancer I also really missed the weather. It was confusing as I lost track of the seasons. Experiencing extreme weather was on my big list of things that I wanted to do after chemo. It was one of the reasons why I loved living in Eastern Europe.

And I certainly got a whole load of extreme weather. Snow, ice and bitterly cold temperatures I had it all.

One day I was live on the TV news while stood outside in what seemed like artic conditions. When I came off air I realised my lip gloss had frozen.

At the time this was all part of my foreign adventure. Maybe I was packing in lots of wild weather back then so I wouldn’t be too frustrated now. Even so I’d quite like some more of it. Sorry in advance if you get caught in a sudden downpour but I’m going to be stuck at home for a little while yet so I’m really hoping for some more truly awful weather!

Olympic victory

Yes I made it!

Not long after my last session of chemo I actually got to see the Olympics. I still can’t quite believe it.

The day before I’d been shattered. I wondered if I could even make the journey across London. But there was no choice. I wanted to go so I had to feel well. After months worrying about tumours, rogue cells and being so agonisingly ill, it was great to focus on something totally unconnected to cancer.

Mum and I had tickets for basketball but our first event of the day was show jumping at Greenwich Park.

 

To get to the venue we did it like David Beckham and sped along the Thames by boat.

I have to admit I was nervous about the day ahead. I hadn’t done anything requiring this much effort for such a long time. Despite being determined not to be beaten by the chemo, I knew I was going to have to take it easy. But this wasn’t about what I couldn’t do; it was about enjoying a glimpse of normal life and how things will be when I’m all recovered.

Because of this I thought there was no better time than to wear a wig for real. Say hello to Raquel! This is a Raquel Welsh wig and so it becomes my Raquel. It was quite surreal suddenly going blonde.

The Olympic day was planned like a military operation. I’d slept as much as I could since chemo. I’d organised my medicine so that I was taking the max pain killers at the right time on the Sunday. Most importantly mum had hired me a wheelchair.

 

There was a torrential downpour as the morning session of the show jumping started but it didn’t matter. I’d managed to get to the games. It was an amazing feeling to be part of the Olympics.

For Team GB it was the beginning of an historic gold medal winning performance. I was also finding it quite tiring. Plus the super strong tablets had left me drowsy. As the final horses finished I had a sleep in my wheelchair. I was very grateful for that chair. There was no way I could have managed without it.

It had been mum’s idea to get the wheelchair even though it meant that she had to push me. I thought that we might only manage the morning. Mum had had other ideas and we headed for the Olympic Park. Luckily she’s very fit and when we had a clear stretch of pavements we whizzed along. If there were people walking the same way as us, mum enjoyed overtaking them.

It was definitely fun but shocking too. It made me understand just how much of an impact the cancer, surgery and chemo have had. Thankfully I know that I’ll recover.

Spending all day in the wheelchair also left me stunned. It was as if some people had never seen a wheelchair before. As we tried to navigate busy areas, some just starred and stood in the way. When we needed help few people offered any assistance.

The people working at the games however were brilliant. At the Olympic Park we were given a lift on a golf buggy. The wheelchair was strapped to the back. Our driver tooted his horn and shouted, “Team GB on board” as we made our way through the crowds.

The last time I was there was back in January. I was reporting live for BBC News on the start of the Olympic year. Just a few days before I had symptoms that made me think that something could be wrong. So much has happened since then but it’s almost all over. I’m so glad that I made it. This feels like I’ve come full circle.

Incredibly we managed to stay to the end of the evening session of basketball. I was knackered, of course and in some pain but delighted. This was good pain, the kind that you get from doing too much. It’s taken days of sleep to recover.

Since the opening of London 2012 I’ve been watching Team GB with so much pride. Now the Olympics has helped me to achieve something that was way beyond my expectations and I feel very proud of myself too.

Soldiering on

I thought I had it all sorted.

I have the chemo; James Bond kills the remaining cancer cells. I’m slowly poisoned as I imagine my own personal army of special agents blasting away at the enemy inside me. I try to carry on as much as normal while I visualise the 007s carrying out this covert operation for me.

But it turns out that I’m at war too.

Following my scary setback last week I had to see The Professor. Despite being totally exhausted, it wasn’t quite as awful as I felt during my emergency stay in hospital. With the infection launching a full on assault, my immune system dropped so low it was almost non-existent. Even he had to admit that it was impressively bad.

As I chatted to my consultant in a small clinical looking room I could hardly think straight. I was so shattered. It was such an effort just to sit on the plastic chair. Really I wanted to have a nice lie down on the medical couch that I could see behind a flimsy curtain. It was so inviting.

I had the appointment with The Professor at my usual hospital yesterday as I’m due to have chemo today. I had to convince him that I was ready to take the battering that you get from the drip of dangerous drugs.

Luckily the blood tests confimed that I was well enough. I’m so glad that it’ll continue as planned even though I still feel shockingly ill.

This will be my fifth session of chemo. After today, I’ll have just one more to go before it’s all over. The Professor reassured me that what I’m going is awful but nothing out of the ordinary. I’m not sure why but having someone else acknowledge just how horrendous things are somehow makes you feel a bit better. It was a welcome boost.

It’s not that I’ve been feeling down. It’s just that I have little energy to do much more than focus on finishing my cancer treatment.

It’s incredibly traumatic, it’s as if I’m in a warzone, my consultant explained to me. For six months now I’ve been under attack both physically and mentally. There’s the pain, the fatigue and the fear. You’re not sure if you’ll make it out alive. The last time I was anywhere near a warzone as a BBC foreign correspondent it was pretty stressful and I was only there for a week or so.

It makes sense – this is a fight for my very survival. While I think of myself as battling this killer disease, I’ve never seen myself as an actual soldier on the frontline. I’ve left that part to my gun-toting troop of James Bonds.

To be honest the fog of tiredness has meant I’ve considered myself to be more like a zombie but I must change that.

It’s much more positive to imagine myself as a solider and a successful one at that. The Professor took great delight in telling me that according to the very latest test results I’m still clear of cancer. So I’m already winning the war!

My Olympic recovery

I really was getting worse.

Not long after updating my blog I climbed into bed and got under the duvet. It was a sunny afternoon, my temperature was rising and yet I was freezing.

Then suddenly there was a spike in my temperature. I knew I couldn’t put it off any more. Mum drove me to the nearest hospital.

By the time we made it to Accident and Emergency my heart rate was racing, my blood pressure had slumped and my temperature was a sweltering 39c. I was quickly put into a hospital bed in what felt like the hottest part of the building.

So I was now a MEDICAL EMERGENCY and terrified. I may have been in hospital before but not this one and never in such a rush.

Tests showed that I was neutropenic. Basically my immune system was dangerously low. I had some kind of an infection and my body couldn’t fight it. Surely it was just a cold?

The doctor wasn’t so sure. He went through a list of possibilities with me; some were very serious and would mean emergency surgery.

I was put on a drip of antibiotics. Lying on my back, I stared at the ceiling and worried. Mum sat at my bedside, occasionally swatting the insects that flew in through an open window.  

It wasn’t until late that night that I was taken by wheelchair through the empty corridors to the cancer ward. I was wheeled into a side room with a television and an ensuite bathroom.

Result, I thought to myself.

The next day I realised it wasn’t such a good thing. I was almost in isolation. With the door shut, I stayed in the room on my own. I looked out on a couple of building and the wonderful weather.

By the time I saw a specialist consultant I was already responding well to the treatment. I was relieved to be told that I probably wouldn’t need anything more than antibiotics.

Most of the time bags of medicine or fluids were slowly pumped into my veins. It was lovely to be on an intravenous drip that made me feel good rather than the evil chemo cocktail that I’m more used to.

My consultant had said the treatment was going to be boring but relatively painless. And he was right. Less than 48 hours after I arrived at the hospital my immune system had recovered enough for me to be allowed home. I was shocked that I was so better so quickly.

Having an emergency stay in hospital was pretty traumatic. I was so glad to be leaving that I cried on the journey home.

I know that while the last lot of chemo will be horrendous, it won’t be nearly as bad as that.

I’ve been celebrating my release with Sasha the dog. It’s amazing that I got out in time for the start of the Olympics. I thought that I’d be stuck on my own in a hospital side room instead we’re going to be able to watch the games together!