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 no 73

Chemo is such a long hard slog. I’m now more than half way in but there are still far too many weeks to go. The drugs are working and my cancer is now stable which is brilliant. It makes the treatment so much easier to deal with.

Apparently I’m coping well. By this point most other women on the same regime take a break. I was determined to push through and get this finished as soon as I can. Although now I’m not so sure.

Part of coping with chemo is accepting this new reality. You can’t live life like you want to. But it’s so boring. You’re too knackered to do much.

One thing I do occasionally is to draw flowers. Like those above. Focusing on the tiny details of the flowers helps me to forget about the bigger picture.

The worst side effect is the tiredness. It’s just horrific and relentless. Most days I’m just wiped out. Often my body is exhausted but my mind isn’t. It’s frustrating. You want to do stuff, your brain tells you can do things just like you used to but physically it’s impossible.

The trouble is that I now have  a dangerously low level of magnesium. My latest blood test result for it had to be double checked as it was unbelievably bad. As my body can’t retain it and the toxic drugs only make this worse theres not much we can do other than regular mega dose drips of magnesium.

The chemo also has an impact on my already rubbish digestive system. I’m on a low fibre diet anyway. I eat hardly any fruit or vegetables. Due to all the treatment I’ve had my body can’t cope with anything which is too hard to digest but now I have to be even more strict. The other week I ate part of a peeled raw tomato. Bad choice. It made me vomit for a couple of days. I know it sounds ridiculous that something so innocent, something healthy can make me so ill.

Generally most people having the treatment are exhausted and this is made worse by the cancer killing drugs. Chemo is often a long, dull day sat in a room full of ill strangers. So it’s understandable that you do what you can to pass the time.

Phones are great for entertainment but recently everyone on my ward had to put up with a visitor playing lots of video clips out loud. At the time all the patients including me were trying to sleep but with each new clip I woke up. I’ve even sat next to someone who talked to a friend for half an hour with their phone on loud speaker. I mean seriously, do you think any of us wanted to listen to both sides of your boring conversation??

Please, please don’t put your phone on loud speaker on a chemo ward, use headphones instead. Otherwise you’re just being selfish.

Okay, rant over. Did I mention that chemo can also make me quite bad tempered!

Chemo no 61

It’s been such a horrible shock remembering just how bad chemo can be. I suppose it’s been so long since the last lot that I’d conveniently forgotten. Otherwise I might not have agreed to have more.

I’ve just been so tired and dizzy from the anti-cancer drugs. It’s been like a never ending hangover. And this is just the start. There are many, many weeks to go.

For this treatment I have a chemo cocktail once a week and then I have a bottle of the stuff to go home with. The container is attached to me. I never thought this part would be so very hard.

The bottle has a clever mechanism pumps the drug into my body continuously. It’s the size of a small bottle of water and it has to come with me everywhere and I mean everywhere. I was given a bag at hospital (below) to carry the bottle around my waist but it’s not brilliant and quite uncomfortable.

My friend Lynne suggested that I ditch this for a 80s bum bag and thats what I’ve gone with! Well almost, the one I using doesn’t look too retro. It’s actually a running belt and seems to work much better.

Now that I’m feeling incredibly exhausted most of the time, having to carry around this bottle of toxic liquid makes things even worse. It’s so frustrating. It’s also a constant reminder that I’m on chemo. That’s something which I really want to forget.

Chemo no 60

I found it hard to believe that this was my 60th chemo cocktail. As you can imagine I was dreading it. I was well aware of how horrific the next few days and months will be.

I had a bit of a wobble the night before but I actually felt great as I sat in the hospital chair waiting for my toxic fix.

I realised that doing something you’ve done so many times before has it advantages. You know what to expect and how to prepare. And most importantly I had Luke to hold my hand.

It was such a long day at hospital. Endless hours of being attached to a drip. For anyone interested I’m having two chemotherapy drugs – Cisplatin and 5FU. Plus the usual fluids, magnesium, and steroids.

Oh yes the steroids. I’d forgotten how wonderful they are. After a few of hours I was on a steroid high. It felt almost like a drunken daze. It certainly makes the chemo cocktail easier to take. So what else is a drunken girl going to do? Take selfies in the toilet of course!

That drunken daze stayed for the rest of the session. Maybe it was the drugs but I felt happy to be having treatment. While I dislike chemo. I hate even more the sense that my cancer is growing again. I want to be in control. As my friend Kevin put it, I’m now building up my chemo-cation airmiles.

When the drips were done, the chemo hadn’t finished. I had to take home a bottle of the 5FU drug. It’s attached to me via tube into the port thats in my chest. I’m now on a constant portable drip. It means this drug will be going into me 24/7. The bottle is attached to a belt around my wait. You could say that its my new hip flask.

I’ve no idea how I’m going to feel. I had the first drug many years before and it was fine. But I’ve never had the second drug or been on a continuous drip. I’ve been told to expect to be exhausted. A couple of days on I feel quite rough. I woke up on the first morning after with what felt like a hangover. I suppose that was only to be expected.

Since my last blog post I’ve had lots of lovely comments. Thanks ever so much. They mean so much to me and help to keep me going.

Thats the first one done, I’m so glad to get that under my belt without any big drama. Just 17 to go.

Christmas cheer

I blame Christmas. Thats why there hasn’t been a blog from me for ages. The chemo is still really tiring but when I’m feeling well, the best thing in the world is just enjoying doing ordinary stuff. I’ve even made my own Christmas pudding vodka!

Okay, it’s not just Christmas thats got in the way. I also had an emergency stay in hospital. A little while ago I suddenly became very ill in the middle of the night. It wasn’t long after a session of chemo. I had hours of severe pain and then I started vomiting. Sorry this is another blog post about being sick!

I couldn’t even get out of bed. Instead I was using the plastic bin in my bedroom. I’d actually bought it thinking that one day it may have an alternative use.

As I’ve had so much of this, I knew it was different this time. This was something much worse that the normal awful. Speaking to one of my consultants on the phone it was clear I would have to go into A and E. The moment when being ill turns into an unexpected hospital visit is scary. You get used to coping with being poorly but when you need proper medical help, it turns the situation into something much more stressful.

30 hours later and I was still vomiting. By this point the only thing coming out was bile. I was too ill to sit up in my uncomfortable hospital bed. Moving made things worse. Instead I was lying on my side, resting my head on a cardboard sick bowl, in place of a pillow. When I needed to throw up I just had to turn my face into the bowl. This is genius, I thought to myself, as I filled another bowl.

Genius??? It was only a few days afterwards when I’d stopped vomiting that I realised just how bad I must have been to think something like that. Drips and drugs helped me to improve. My parents brought in some of my post so I managed to make my stack of sick bowls look a little bit festive.

Almost a week later and I was out of hospital. No one was quite sure what exactly made me so ill but it wasn’t anything serious thankfully. As a veteran of getting bad news, I can’t tell you just how relived I was.

The problem was probably something to do with my stomach lining becoming inflamed. Apparently the correct medical term for my horrific sickness is that it was….”just one of those things.” Excellent.

Since getting out of hospital, I’ve had another dose of chemo and I’m fine. I managed to make the Christmas pudding vodka above. It wasn’t that which put me in hospital!

I have all the usual nonsense that goes with chemo of course. But that’s alright. That’s more than alright. I’m alive and feeling (relatively) well. I’m so looking forward to celebrating another Christmas with the people I love.

Pains and needles

Here’s a tip. If you’re at hospital, about to have a medical procedure and someone asks you what your pain threshold is…..be careful what you say. As I found out, this question means that what’s going to happen next will hurt. A lot. And it involves needles.

I never used to be too bothered about needles. But the pain seems to get worse and worse as times goes on.

When the cancer came back almost three years, I had chemo through a vein in my hand. Each time a new needle would have to be used for the treatment and then taken out when it was finished.

The problem is that the more chemo you have, the harder it is to find a vein. They vanish from the surface of your skin. If I was one of my chemo veins I’d do a disappearing act too. It gets really painful hunting down a vein that can be used. Sometimes they even seem to dry up as soon as the needle goes in.

Then I graduated to a PICC line. Much easier. There is a small operation but after that there are no needles. The PICC line is basically a clear plastic tube which goes into your upper arm, it travels up a vein which ends up in the chest. There’s a short part of the line which sticks out of your arm and thats where the chemo goes into.

However my experimental drug seems to keep blocking the PICC line so I needed something more serious to enable me to continue with the chemo. It was time to say hello to the port. Or to give it the proper name – the port system for continuos vascular access.

The port is small device which is put under the skin in the upper chest on the right hand side. A tube is attached to the port and goes into a vein. The tube does a semi circle and ends kinda above the heart. Everything is buried under the skin. As you can’t see a thing, I was even given a wristband to wear in case of an emergency so paramedics would know I had a port.

You may be wondering you do you get the chemo into the tube? This is the gruesome bit. Basically every week a nurse has to stab your chest with a needle, go through the skin and into the port. Uggggh. At least the awful sickness and tiredness that I’ve having for months have eased up a bit.

So back to the question about my pain threshold. I was sat in a flimsy hospital gown waiting to go into the operating theatre with my friend Sally when I was asked about it. The procedure was explained and it didn’t seem too bad. I said I could handle quite a lot of pain. Haha big mistake.

Inside the operating theatre I was prepared for surgery. An orange liquid was spread over my right shoulder and chest to make it sterile. The stuff was cold, it stank and it was being rubbed into my skin, really hard. I must have looked upset as a nurse asked what was wrong. I could only reply “all of it.” I didn’t want to be there. I didn’t want to be cut open. I didn’t want any of this. How do you explain all that when you feel so emotional that you can hardly talk?

Thankfully I was given some sedative. To get this port under my skin in the first place I needed a local anaesthetic. The first needle hurt, as did the second and the third and then I stopped counting. It was clear very quickly that I needed some painkiller after all.

My eyes were firmly shut to stop the tears so I couldn’t see the nurse who took my hand. Such a kind, compassionate gesture. She told me to squeeze her hand when I felt pain. The needles were bad but it was even worse when the anaesthetic had to be firmly massaged into my body. Finally the medication kicked in and the squeezing could stop.

It was only 11am by the time I became the proud owner of a new port. It felt like enough had already happened for one day. But I still had the weekly dose of chemo to go. Just to illustrate the seriousness of the op, I wasn’t allowed to walk instead I had to be wheeled to the ward on a hospital trolley.

The rest of the day was fine. Just a normal, horrible day at hospital.

Things picked up on the way home. While waiting for the train home, we were randomly offered some free cocktails. I wasn’t sure if I was allowed any alcohol straight after treatment but after what had happened, I just didn’t really care. We said yes. It was the best cocktail I’d ever had on a chemo day!

On repeat

My life seems to be stuck on repeat.

Get cancer, have treatment, recover. Get cancer again, have treatment, start to recover. Get cancer again, have treatment, start to recover. Get cancer again, have treatment, start to recover. Get cancer again…

Yes, it’s back. The disease is active once more.

The wonderful drugs I started taking last October as part of a clinical trial, had managed to keep it under control. They shrunk the tumours. These clumps of evil cells are still dormant.

But cancer is clever. It morphs and mutates. It learns how to beat whatever gets thrown at it. So I now have new spots of the cancer near to the shrunken, old tumours. Tiny bits of worrying shadows have shown up on my scans.

My consultant described them as flecks. I think of them as like gold flecks in a beautiful Turkish carpet. When you roll out the carpet, they are so small that you hardly see them but they are there and they change everything.

I’ve stopped taking the no-longer-so-wonder-drugs. Looking on the positive side I am now allowed to eat Seville oranges and grapefruit which had been banned. But, thats it.

I feel weary and frustrated that my body is such a successful cancer making machine. It means yet more toxic treatment. Once again I’m back at hospital and ready for danger. My identity wristband is red in case of an emergency. It should alert medical staff not to give me a drug that almost killed me in the past.

Today, Wednesday 2nd July, I am having chemo cocktail no 36. Just writing that makes me cry.

You may try to imagine how I’m dealing with all this but don’t. Unless you’ve had far too many cycles of chemo it’s impossible to comprehend what I’m feeling. Mostly I’m fine.  I’ve pretty much come to terms with this. I can cope with writing this blog but as for talking about it, I’d rather not. I mean, what is there left to say? It’s awful.

You might be wondering what you can do or to say to me, or to someone in a similar situation. Here’s a link to a brilliant article you should read.

http://www.telegraph.co.uk/women/womens-life/10832932/What-to-say-to-a-35-year-old-mother-dying-of-cancer.html

The new tumours are very small. They are not causing me pain. This latest development is a cruel blow – another treatment has stopped working however I still have options. I know that my amazing doctors will never give up on me.

My advanced cancer has advanced again but this is not game over. Not by a long way. I am certainly not dying. I am not terminally ill. Worrying about the future is a waste of my precious energy. I just want to enjoy now.

Lets get this new treatment started.

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#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#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.