Chemo mini-break

I’d been seriously thinking about taking a week off as the chemo had got so exhausting but that decision was taken out of my hands. Last week as usual I had blood tests when I arrived at hospital. These are to make sure my body is well enough to cope with the evil cocktail of drugs.

I knew that I’d been feeling awful for several days. It turned out that I really was properly ill. The results showed that basically my immune system was too poorly for chemo. For anyone interested my neutrophils were 1.4. It means that I am have neutropenia and much more susceptible to infections.

At hospital I was told that I should spend my time off resting. After a magnesium drip I was sent home. It felt weird, almost like I was skiving. I hate the chemo but I was mentally ready for it. Instead we got to go home early.

I was warned that having the week off could make me feel much better so I shouldn’t over do it. But there’s been not much chance of that.  For the fist few days I just felt knackered and mostly snoozed on the sofa.

The biggest change is that I’m not attached to a bottle of chemo which needs to be carried everywhere. It means that this has had a week off too.

It’s brilliant not being connected to the bottle 24/7. My port gets a valuable week off too. Thats the thing which is buried in my skin and where the needle goes in and connects a tube to the bottle

I’m so aware of having all this stuff attached to me that it’s strange to not have to worry all the time. Usually I have to make sure I don’t move my right arm too much otherwise the needle could pop out. I have to be careful that the tube doesn’t catch on anything, especially door handles. Every time I stand up I need to remember to have that stupid bag wrapped around me.

After almost a week off I am starting to get a tiny bit better. Getting your brain and body back is an incredible feeling. Suddenly your head clears and you can move around a lot easier. It’s not all good though. When you’re really ugggggh you tend to focus on how horrible you feel. However when you’re not so ill, you become much more aware of normal life and what you’re missing out on. It becomes tantalisingly close but it’s still just out of your grasp. But even so I’d much rather feel like this than really sick.

I know that my chemo mini-break must come to an end soon. Despite how dreadful the drugs make me feel and how inconvenient how the bottle is, I really hope that I’m well enough for the toxic treatment this week. I don’t want anymore time off. Well I do, but i know thats not the best option for me. This stuff is helping to enable me to live longer and however awful it is, I need to finish this course of chemo.

Chemo-cationed

For the first time in months I woke up without a nose bleed. It’s a sign that my chemo-cation is coming to an end.

It hasn’t been a typical holiday although I’ve mostly just done a whole load of nothing. As I recover from my anti-cancer treatment, the hardest thing to deal with is the tiredness.

It’s been a few weeks since I finished my chemo, since then I’ve mostly slept or sat in a comfy chair but my favourite place to be is outside lying on the grass with the sun on my face. A soft fabric hat protects my thinning hair (more of that later.) Sasha the dog likes to sit next to me. I ask her why when I’ll stop being ridiculously exhausted. She has no answer.

Some of the side effects are easing. So, my moon-face seems to be deflating. But others are actually getting worse. My feet are so swollen that wearing shoes is painful. My toe nails and one finger nail appear like they’ve been dipped in acid.

My eyebrows and eyelashes are growing back but the hair on my head is falling out. And I mean seriously coming out. Towards the end of the chemo cocktail sessions my hair had started to grow. Now that it’s falling out in handfuls it seems so cruel. It’s difficult to stop myself constantly checking but each time I’m rewarded with a load of my hair between my fingers. I reckon that I’m going to need my wigs for longer than I thought.

Compared to what I went through during my treatment, both the hair loss and tiredness seem much harsher. It’s meant that my chemo holiday has been tough however there was one amazing afternoon when I got away from it all.

A couple of weeks ago I went to a Buckingham Palace garden party. As you do! Along with several thousand smartly dressed people, I had afternoon tea with the Queen and the Duke of Edinburgh.

My fug of fatigue was gone, it felt as if I’d woken up and for a few hours I was back to my old self. I think it was down to being part of something so special.

During my chemo-cation I also had a trip to Accident and Emergency. Not quite so pleasant. Last Wednesday I caught an infection and my temperature started to rise. As this happened before I knew not wait too long before going to hospital. When we arrived my temperature was bad but not critical. We sat and waited to be seen by a doctor.

Over the next hour I felt increasingly ill. During that time we were joined on the hard metal seats by five other patients. Separately they hobbled in and bizarrely everyone seemed to have twisted an ankle.

My temperature wandered into the danger zone. I was eventually given a bed in the emergency ward. By that point my blood pressure had dropped and my heart rate was worrying.

After some treatment and a night at the hospital, my immune system was back in charge. After the battering that it has taken recently, I was so pleased that it was able to fight back. It was only when I’d properly woken up that I realised I was staying in yet another room without a view.

I was able to leave hospital the next day but the infection took its toll and made me even more shattered. Ugggh.

Finally, life is now returning to normal and I worked at the weekend. At the end of my shift I felt like I’d done a massive work-out at the gym. I had no energy left. Not just my legs, but also my arms really ached. This was a different kind of tiredness. It comes from deciding that the chemo holiday can’t go on forever and pushing myself to do more.

Considering my diagnosis – this is a luxury. I’ll never beat the cancer but I can enjoy the time when I feel good and I’m not having treatment. I’m more than happy to have this sort of exhaustion as it shows that after 17 sessions of toxic chemicals I’m slowly starting to feel better.

Chemo#11

Squeamish warning: there’s blood in this blog however it’s a special kind of blood!

But before we get to that, let’s go back a bit. Last Sunday I was worried that I wouldn’t be well enough for chemo#11. I’d picked up a pesky infection although I had no idea where I’d got it from. It was nothing serious, unless you’re going through cancer treatment that is.

My immune system was already pretty poorly – the chemo doesn’t just attack the bad stuff in your body, it also harms good things. Now my immune system was having to fight off this unwelcome infection.

I took to my bed for a few days. I was mightily relieved that by Wednesday it had beaten the bug, not the other way around. I was healthy enough to be poisoned. Excellent.

Before I could have my chemo cocktail I needed a cheeky blood test. The permanent PICC line that goes into my arm is supposed to make life simple. The drugs can go into it and blood comes out easily. There’s no need for any nasty needles. But the blood refused to leave my veins no matter what the nurses did. They pumped and pulled and pushed my arm.

Bizarrely one of them suggested I coughed, a lot. Finally the blood began to flow. It was collected in an air-tight tube with a plastic stopper which was firmly attached to the top of the clear tube.

Then something very freaky happened.

As the nurse held the tube, the plastic top suddenly flew off and hurtled several feet across the room followed by my blood. Somehow it spurted out of the tube and left a trail of splattered red drops over the floor. It looked like I’d been stabbed.

Luckily the female patient who was wearing a pastel pink jumper and had been sitting to my left had popped out of the ward for a moment, otherwise she would have been splashed by my blood.

The nurse reckoned that my blood had sort of exploded out of the tube. She said she’d never seen anything like this before. It seemed that the blood sample had burt out of the tube of it’s own accord. So, apparently, my blood is explosive!

Actually it may well have had something to do with air pressure in the tube. Whatever it was, the hospital floor now resembled a crime scene. It was gruesome and funny at the same time.

With all my blood spilt, the nurses tried again, but I began to feel very ill. As I sat in the blue hospital chair I kinda collapsed. It was like I’d been hit over the head. I almost lost consciousness and could hardly move. My body seemed as if it had turned to stone. The last time I felt like this I was in intensive care and fighting for my life.

When one of the doctors pulled the blue curtain around the place where I was sitting and I knew THIS WAS SERIOUS. I had a oad of tests to try to work out what had just happened. I hadn’t started the chemo so this wasn’t a reaction to the drugs.

I felt ever so frightened but at least I wasn’t alone. My friend Jenny helped me to sip water as I couldn’t lift my arms.

It was feared that I might have been having a stroke but in the end it seemed that I probably fainted. Having spent days in bed may have made things worse.

Did any of this get in the way of my treatment? Of course not.

While I sat back and recovered I was attached to a drip and given all the pre-meds so by the time I felt a little better I was ready for the chemo. As always I couldn’t stop myself falling asleep. But this was a different kind of feeling knocked out. Something that was much easier to cope with. And there was no more of that explosive blood.

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.

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!

A turn for the worse?

Something has changed. Following each session of chemo you’re really ill for a while and then the symptoms start to ease. I had thought this was happening. I’ve had a good day or two but now instead of getting better, it seems like I’m getting worse.

I suppose I should’ve expected this. My body is taking a pounding from the poison that I get every few weeks.

I think that I may have an infection or a virus. In normal life it wouldn’t be a big deal but my immune system is compromised. Once again I’ve called on the services of James Bond. But to be honest it’s the painkillers which are helping more than a fictional hero with a six pack.

My digital thermometer has become a close friend. Constantly checking my temperature has got a whole lot more obsessive. If it gets much higher then I have to go to hospital. I suppose that I’ve been luckily as my chemo has been relatively uneventful so far.

When I first started having this evil treatment I was given a couple of medical cards to carry at all times. If I need to go to A and E these tell the staff that as I’m having chemo I have a high risk of something called neutropenic sepsis which is a MEDICAL EMERGENCY. You know it’s serious when the NHS spells it out in capitals.

As well as feeling rubbish, I don’t look too well either. My eyebrows are disappearing. You never realise quite how important they are in framing your face until they begin to go. One of them is fading faster than the other. It’s almost as if I’ve been on a dodgy stag do and it’s been shaved off, right in the middle of the brow.

I’ve tried using make up to disguise this but it doesn’t look right. So I’ll have to get myself an eyebrow stencil kit off the internet. And I need some fake eyelashes too. Right now I barely have the energy to buy them let alone use them but one day I will.

That’s what is keeping me going. Not the fake lashes and brows although they’ll go very nicely with my new big blond wig. No, it’s the knowledge that I just have a couple more months of this to go.

It could be so different.

If I hadn’t had that random pain just after Christmas and if mum hadn’t insisted that I got a second opinion when I was told it was nothing serious then my cancer may not have been caught in time.

I wouldn’t have this luxury of moaning about how awful the chemo is instead I’d be fighting for my life. I know this nightmare will be over soon enough and then I should start to feel better. Hopefully by this Christmas my life will be back to normal and the chemo a horrible but hazy memory.

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.

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.