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.

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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!

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Sickness and in health

The last few months have been some of the worst of my life. I’ve never ever been so ill for such a long period. I started my current chemotherapy in July and it’s been horrific. I’ve had plenty of this kind of toxic treatment before. Almost 50 sessions when I last counted. But this weekly chemo is by far the hardest to cope with.

Imagine what it’s like to wake up with a bad hangover and the flu, pretty much every day. That has been my life for almost four months now.

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The tiredness has been chronic. There have been days when walking from one room to the next has been almost impossible. I’ve clocked up some serious sofa time. Lying down of course, as sitting up is too exhausting. I often feel really dizzy when I do stand up. Even just bending down makes me feel faint. Most of the time, reading or looking at a computer is too much effort. Yet despite not doing anything all day, I still need a huge amount of sleep at night. Bad days feel incredibly bleak. The never ending fatigue is debilitating.

And so too is the sickness. Mostly it’s just nausea. Ha, I say just nausea, but it’s ridiculous. (It’s perhaps best not to read on if you are feeling a bit queazy.) Generally I have about three days a week of actually being sick. Here’s how I cope: I lie on the sofa, take a variety of tablets and stare at the TV trying not to think about it. Willing myself not to throw up. I concentrate on the screen and the sickness seems to pass eventually. This doesn’t always work. Sometimes it’s best to get it over with. It doesn’t hurt that much but these days I always seem to have tears rolling down my face as I vomit. It’s not that I’m particularly upset so I’m not sure why it makes me cry.

This nausea taints so much of my daily life. I have a long list of food and drink that I can’t bear. Most of the nausea is associated with hospital visits. It reaches a peak a couple of days before chemo. Just thinking about my treatment can send me rushing to the bathroom. A few weeks ago, a friend who was coming to chemo with me sent me a text. We were arranging where to meet. But just reading the text made me throw up!

Must of the time I haven’t been able to eat much, which is no bad thing, although not eating doesn’t stop me being sick. It’s a strange sensation when it’s just cold water that comes out. But thats much better than bile. I often wake up early in the morning and my first thought is that I’m going to be sick NOW and before I can say to myself, you’ve got to be kidding, it’s started again.

I should explain that this is not a standard chemo, I’m on a clinical trial. The weekly infusion only takes 15 mins and as it slips into my veins I get the taste of almonds in the back of my throat. Something else for my banned food list. This is experimental stuff and so it’s taken a while to establish the right dose for me. My chemo cocktail has been reduced a couple of times. This has eased the symptoms, a bit. It means more sitting on the sofa and less lying down. It’s still really tough though and I have many more weeks to go.

But there are a couple of things which are getting me through all the horribleness and make it all worthwhile. My tumours are shrinking and I am happy to still be alive.

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.

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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.

Happy Mothering Sunday

Mothering Sunday, two years ago, it felt like I was barely alive. I was stuck in hospital. But it was thanks to my mum that I wasn’t dead. I don’t think I’ll ever be able to express just how grateful I am to her.

I hadn’t long been out of intensive care. I was rushed there the day after my massive cancer-removing, life-saving operation. While I was recovering from the surgery, I slept pretty much all the time, but suddenly without warning I quietly stopped breathing. It was my mum, who’d been sitting beside my bed, realised that something was badly wrong and raised the alarm. She saved my life. For the second time.

The first time was much less dramatic. A month or so previously I’d had some worrying symptoms. The severe pain had been dismissed by a couple of medical professionals. They’d said it was probably nothing to worry about. My mum wasn’t convinced and made sure that I went for some proper tests. She was right to make me see my consultants. She ensured that I survived.

 

Then…

That Mothering Sunday in hospital in 2012 I felt so incredibly ill. I’d lost a huge amount of weight and could hardly walk. I didn’t realise how frail I was at the time. Mum and dad visited that afternoon. It wasn’t your usual Mothering Sunday. We chatted in the ward’s television room. I got there with the help of a walking frame. For the past couple of weeks I hadn’t been able to sit in a chair without collapsing so for me these were big achievements. We celebrated that I’d made it through the worse.

I’ve been thinking about this recently as I accidentally came across some photos a few days ago from that Mothering Sunday. To be honest I can’t really remember them being taken. My cancer treatment over the past two years seems so much of a blur. Perhaps it’s easier to forget many things. Last Mothering Sunday I was bang in the middle of more chemo.

But this year is so different.

The chemo cocktails are finished. Hopefully it’ll be a long while before I need any more. I don’t feel ill, I feel brilliant. I’m still very tired but I just have to pace myself.

 

…now

I haven’t been able to do too much lately other than concentrate on recovering and getting my normal life back. Plus I’ve been planning a few more things from my List for Living. I’m now settled in my own home in the countryside. I’m very much enjoying number 1 and 2 on my bucket list!

Compared to the past couple of years, I feel so much better. But there is something else that makes this Mothering Sunday so special. While you read this I could well be baking or boiling or maybe burning. This year, for the first time since getting cancer, I’m cooking a family lunch for Mothering Sunday. It’s a very small way of saying thank you. However lunch turns out, this will be a very happy Mothering Sunday.

Result

I’m back. Finally, for the first time in months I feel much more like me.

The trouble with chemo is that it takes such a long time to recover from. It doesn’t help that by the time I finished, my magnesium levels were almost non-existent. Slowly I’m getting better. I wish that just having the toxic drugs automatically annihilated tumours but it’s not that easy. You could go through all this and it still have no effect.

One of the hardest parts of having cancer is waiting for important test results. It’s like having a really evil lottery ticket. You get automatic entry into the draw. With the right set of numbers, your life could be transformed. You get to have more years on the clock, a renewed sense of hope for the future and a holiday from the chemo.

Before you find out the result it seems that anything is possible. You run though all the lovely things that the good news would bring. It seems so real. Despite the odds, which for this advanced stage of ovarian cancer are bleak, you always dream of winning the jackpot.

What makes this cancer lottery such a nasty game is that being given the wrong set of numbers can only mean more pain, suffering and worse. When it’s bad news, it feels like you were almost within touching distance of something great and it’s been snatched away. When the reality is that you weren’t even close.

So several weeks after finishing chemo I was back at the hospital to find out my magic numbers. It’s at times like this that you’ll find me next to the fish tank. Sitting in a high backed chair with hard wooden arms. The chair is a nasty shade of pink. It’s a colour that is probably supposed to be welcoming to cancery people. When to me all it says is bulk buy and wipe clean.

I am solid block of nerves. Not the excited, adrenalin infused buzz that I get when I’m about to do something scary or go live on TV. But there is a crushing lump of anxiety which fills my body. It makes my breathing short and my brain run slowly.

You wait and wonder about the numbers.

My coat is off and laying across my lap and my bag is by my side. I am more than ready to spring out of my seat when my name is called. The fish tank seat is nearest to the consultants’ rooms.

No news is good news. For those few moments or even hours you are not being told something horrible, which is why I don’t mind the waiting part.

It’s the wondering that I find stressful. It’s as if every cell in my body is on standby. Ready for flight or fight but all you can do is sit. I’m almost frozen with fear. I don’t really want to talk, I can’t eat or drink, I can’t move. The tips of my fingers tingle with nervous energy. Or maybe it’s the chemicals.

You try to think positive but after getting so much bad news you know that hope alone won’t change a thing. You prepare for the worst. My brain is jittery.

Yes or no? Good or bad? Life or death? My consultants don’t mess around. We’ve been through this so many times before. They know that I want the cold, hard facts straight away. It only takes a second to find out. The combination of chemo and clinical trial drugs are working. It’s the right result.

Yes. Good. Life.

All I feel is relief. Not happiness or joy. This pure relief is similar to the sensation you get from quickly drinking a glass of something strong and full of ice, it seems to flood through my body. I relax.

The enormity of the news is only now starting to sink in as I start to feel more like myself. It means I get to live longer. Hopefully years longer. This is amazing!

My cancer is not cured but the disease is dormant once again. No one knows how long it will stay this way. Right now I’m just trying to focus on being the current holder of a winning ticket.

Chemo no 6

It’s all over now. My last chemo, thankfully, was a couple of weeks ago. It’s probably not the final one ever but it’s the last one for a while. Maybe for months. Hopefully for years. I’m so happy to be at the end of this current course of treatment. I’ve now had 35 chemo cocktails in total, I think, most of them over the last two years. To not have to face the prospect of that evil stuff, like that above, dripping into my veins is wonderful.

I hope the break is long enough to get some hair. It’s still a shock to see my bald head. I really miss not being able to tie it back. Yes I could do that with some of my wigs but it’s not the same. Anyway I’m not really into wigs at the moment. Wearing a wig takes up precious energy. Instead most days I wear a soft hat. It’s much more comfortable and doesn’t seem out of place at this time of year.

But to celebrate chemo no 6 I wore my favourite wig to hospital. It’s the one you see me wear when I’m occasionally on television. I now have an impressive collection of them however my work wig is the one that I love wearing the most. Despite this it still has no name!

I always like to try and look smart when I go for treatment or consultations. It gives me back a tiny portion of control, knowing that I’m not too ill to wear make-up and a dress. If I look well, I feel better. I feel worse when I don’t make an effort. Cancer forces you to give up so much of your identity that you have to cling onto what you can.

Chemo 6 was totally unremarkable. I saw my consultant, The Professor. It was the best kind of appointment as there were no test results to be told about. We ran through all the side effects of the past few weeks but there was nothing alarmingly awful. Just standard awful.

For this treatment, mum and my aunt Rose came along. To keep them entertained I sent them out on missions. First to the pharmacy, now thats always it’s an adventure which tends to take ages – finding the place and then waiting in the inevitably long queue. After picking up my prescription I asked them to go in search of a jacket potato with melted cheese. They were successful on both counts.

I then slept for a few hours. Probably the most interesting thing was eating a baked potato in bed in the afternoon. It was the first time I’d had eaten something hot while having chemo. The day really was that dull.

The nurses stayed late to ensure that my treatment got finished. I ended up being the last patient to leave the ward. Parts of it were already in darkness and the cleaner had started his evenings work. As I walked out my spirits lifted. I had a dizzy, drunk, fuzzy feeling. The potent cocktail of super strength drugs and steroids was acting like the rocket fuel, giving me the boost I needed to get home.

I felt so wired and that we started our journey by bus. It took us through streets that have become so familiar to me. Past the school where I used to play netball matches for the BBC team and then along a road to the sports centre where we used to train. The outdoor court we used was next to a row of football pitches. It had a concrete canopy as it was just below a busy fly-over. With such a stark, urban setting, it always felt like the set for a trainer advert.

The bus stopped near the training ground and a sporty looking woman got on. She was dressed in the kind of kit that I used to wear for netball. As we travelled further away from the hospital I smiled to myself. I realised that this was a tantalising glimpse of what my life after chemo could be like.

Happier New Year

This may seem a bit late but pretty much most of Christmas and the New Year has passed me by. There were some lovely moments however far too much of the last few weeks have been a blur of illness, aches and a throat full of the most painful mouth ulcers.

When it gets this bad you have to pause your life. Most of the stuff you want to do just doesn’t happen. You have a constant exhaustion. Meanwhile it seems like everything around you just carries on as normal. Recently there have been some wonderful comments on my blog. Thank you. I’m sorry that I don’t have the energy to reply right now but they’re all read and apperciated.

The three weeks recovery time after chemo no 5 are always the worst because it’s the penultimate load of drugs. The build up of toxic chemicals is horrific. There is no real chance to recover before the final session. Somehow chemo no 6 doesn’t seem quite so awful as you know that the treatment is over. At least for the time being.

So it was on Christmas Eve that I had chemo no 5. This was exactly a year after being told that the disease I’d thought I’d fought off was advanced and would kill me someday soon. What is it about my cancer that ensures I spend Christmas Eve at hospital??

This year there were no mince pies as we waited. It didn’t matter as I’m not allowed to eat on the morning of my chemo anyway. But there was some Christmas cheer on the ward. Especially as my friend Chantal brought along some festive flowers.

I saw the same lovely consultant as the year before. I’ve been her patient for so long. We have shared some Incredible highs….she gave me the all clear from my ever first lot of cancer. And more recently, some terrible lows…on Christmas Eve 2012 she explained that I may only have months to live.

But Christmas Eve 2013 seemed so much more positive. The latest test results were encouraging and showed that the chemo was giving my latest tumour a good kicking. Most importantly I was still alive! Still able to sit in that small, bright room and talk about my future. On the way out I gave my consultant a hug. I thanked her for helping to prolong my life. There’s not many people you can say that to!

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It wasn’t great being in hospital at that time of year. But at least we were all able to leave at the end of the day. There was a unique feeling that we had something special waiting for us when the treatment finished. Normally all you have to look forward to is projectile vomiting and a chemo hangover.

Even my bag of drugs had a Christmassy look. As they slipped into my veins I had a dreamless doze under a thin, blue blanket. When I woke up it was time for Christmas.

That night, when we got back, I slept in my own home. I’ve now properly moved to the countryside. Thats no 1 and 2 that I’ve been able to tick off my List for Living! It means I’ve stayed alive long enough to do the most important on my list. As I fell asleep I was happy that this Christmas Eve was much better than the last one.

No 50 on the List for Living


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

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It’s exactly a year since I was told I may only have six months to live!! And here I am, very much alive.

I marked the special day with a festive chemo cocktail at hospital. But I’ve also had some proper celebrations. If you keep beating the odds what else can you do but drink a glass or two of champagne.

Happy Christmas! x

Chemo no 4

If you’ve never experienced chemotherapy then you should consider yourself incredibly lucky. It is really, truly, one of the worst things I’ve ever had to go through.

I’m now just over half way through my current course of treatment. What makes it so bad is that it builds up in your system. This cumulative effect makes each evil chemo cocktail more horrific than the last one. This stage is also tough because I’m still a while off from finishing.

It seems like ages ago that I had chemo no 4. It’s taken me more than a week to start to feel sort of normal.

My normal is very different these days. It means I feel okay. I’m not stuck in bed. I’m not throwing up. I’m not feeling too emotional. I can walk without too much pain. That’s my new normal.

Despite this I still quite enjoy the actual chemo day itself. As usual I had lovely friends there to help distract me. They came armed with some very thoughtful presents. So Chemo no 4 went quickly.

But within hours, I could feel that the poison was working. This doesn’t usually happen so fast. Over the next few days it got worse. It seemed like I was tumbling into a deep pit of misery. My body and my head hurt so badly. There was intense tiredness and nausea and all sorts of other horribleness. It took four days to hit rock bottom. It was a very dark, bleak place and it took far too long to leave.

Now, I’m out and suddenly it’s almost Christmas. When you go through cancer treatment you kinda dip in and out of life. You lose track of time.

Luckily I have something to remind me about 25th December. My next session of chemo is on Christmas Eve. It’s not the most festive of things to do. But I’m still here. And this time last year I wasn’t sure that I would be.

Chemo #3

I didn’t realise it at the time but I think that it all started to go wrong with the chocolate milk. The night before my chemo I forgot to have my usual glass of cold, sweet milk. I read somewhere that it helps you prepare for the onslaught of cancer-kicking chemicals. Not sure how much science there is to that but it’s a comforting routine.

It was dark when we set out for the hospital on Tuesday morning. My aunt Judy was driving us. She was a games maker driver for the Olympics so I knew I was in safe hands. But the miserable weather and sloooooow traffic jams seemed determined to conspire against us. Then I remembered about the missed milk. I knew it was going to be one of those days.

When we arrived I noticed that the room on the chemo ward, which was to be my base for many hours ahead, had a stopped clock. That just about summed up how I felt.

If you’re not ill, you may think that its terrible what I’m going though. It is. But I also get to see the other side. At hospital there are many people who are far worse than I am. Clearly it means that there are sometimes emergencies and delays which can’t be predicted. I don’t mind waiting, I’m just relived that its me left sitting there, instead of causing the consultants to come rushing off through the corridors.

I was told that my blood count was really good. It means my body is coping with the savage chemo regime and my immune system is recovering well in-between the sessions. The only problem is with magnesium. As always, it seems, this is far too low and I needed a bag of it via the IV drip. That added on another two and a half hours before the chemo kick-off. And so it went on.

But there was no drama for me, thankfully. Instead I had wonderful friends to entertain me who brought cakes, presents and gossip from the outside world. I feel so very lucky to have the support of lovely family and friends.

And I’ve saved the best for last. I had my first set of test results since the start of my latest lot of toxic cocktails. Big drum roll…..They show that the chemo is working!!!

After just one session of chemo, the tumour marker tests called the CA125, has dropped by a quarter. It’s amazing news and will help me get through all the horrible side effects to come. I’m already half way through my treatment. Just three more to go. Hooray!

Back home after a marathon 11 hours at hospital, I finally got that cold glass of chocolate milk. It was a sweet celebration.

Oh, by the way, happy 100 to me! This is my 100th blog post. I never thought I would do so much blogging. But continuing to blog means that I’m still here and still going strong. Thanks for reading and being there for me.