Tag: Tax

Breast cancer lesson number 113: Being strong sometimes means not holding back the tears, but letting them fall

On By Jackie ScullyIn Chemotherapy, Happiness7 Comments

Today, I took my brave face and my busting-at-the-seams pink notebook – complete with list of side effects from Tax – to the oncology clinic. As I sat there reading them out and describing the last three weeks, however, that brave face quickly fell away.

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Knowing that this is the first day of my #100happydays project (you can read lesson 112 here to find out more), you’re probably thinking I’ve had a bit of a false start. But, I have to say that having a good cry in front of my oncology nurse was actually rather liberating.

It’s often hard to successfully describe symptoms when you’re no longer experiencing them. But tears never lie. Reliving the panic I felt the night my temperature spiked teased out those teardrops. Describing just how hard it is to spot the symptoms and determine what is and isn’t serious accounted for more than a few extra drops. And, discovering that my liver may be struggling with the chemo and that they may need to lower to dose to stop it being damaged permanently, certainly increased the flow. (Fingers are crossed for Friday chemo). 

For me, these tears were an acknowledgement of the fact cancer has shown me just how fragile life really is. One day you’re just another person trying to decide which kind of breakfast cereal to try. And then all of a sudden you’re a patient with no hair, clutching a thermometer hoping you don’t have a potentially fatal complication. That is, after you’ve got rid of the cancer! Life is fragile and oh so precious. And, having a good cry about that fact made me feel so much better. 

I did learn a few interesting facts once I had wiped away the tears. Firstly, when on Tax, the temperature thing is a slight red herring. Not hitting 38 degrees that night was no reason not to call the out-of-hours registrar. If you feel unwell, you need to pick up the phone. I also learned that, as well as lowering the dosage, they can transfer me to a drug called Paclitaxel (on a weekly infusion) to try and lessen the side effects. The prospect of another six chemos instead of two made me resist this option, but it may be something to revisit if chemo five is as brutal as four. I also learned that I should carry tissues more often. NHS paper towels aren’t so kind on the eyes! (Coincidentally, the opportunity to buy some came moments later on the train home when I was approached by a lady selling them to feed her children. Good will and soft tissues works for me.)

Of course, I did find more than a few happy moments to offset the tears. I had a good chat with the nurse about her PHD and how different patients respond to the same information. I had a lovely cup of tea in Greenwich with a thoughtful friend (who bought me such beautiful flowers), received a beautiful e-card from another and have just spent the last few hours eating birthday cake (not constantly I hasten to add) and watching my nephew (to be) stack plastic doughnuts. The icing set nicely on the cake too. In a strange way, being reminded of the fragility of life made me even more grateful for the little details it had to share with me today.

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We, none of us, are guaranteed a tomorrow. But that doesn’t mean we should hide our tears today.

There is also no greater smile than the one someone gifts you when you still have tears in your eyes.

Breast cancer lesson number 104: Small steps can make a big difference

On By Jackie ScullyIn Charity, Chemotherapy, Happiness4 Comments

If you’d asked me at about 4am this morning, what I hoped would be my achievement of the day, I would have said getting out of bed. With muscle aches, bone pain, a sore throat, tingling in my toes and my feet and a continued sense of emptiness, I woke up today – or rather decided it was morning – thinking it might be just one of those days when it would be ok to lose myself in a good book and a packet of painkillers and try again tomorrow. Sat in the evening sunshine with a smile on my face, however, I couldn’t have been more wrong.

There are two reasons why I made it out of my pyjamas and decided to fight the fatigue. Firstly, I had a dentist appointment. Usually, just the thought of those blue gloves and shining implements would be enough to tempt me back under the covers. But, having looked after me so well before chemotherapy, I felt I really should make the effort (especially given the surgery is about two minutes from my front door). It was a rather nice experience in a way, although I confess this had less to do with the shiny tools and more to do with the fact the chair worked wonders for my pains, almost hugging my body as it tilted me closer to the dentist. You know it’s bad when you look to the dentist for a bit of comfort!

The second reason is a little closer to my heart. Today, I had a rather important message to deliver and I’d promised myself I would do my utmost to get out of my fluffy slippers and deliver it – pain or no pain. And, that’s exactly what I did.

So, at 1pm today, I wasn’t surrounded by cushions, but a group of business women on their lunch hour all waiting to hear what I had to say about boob checking and why ‘copping a feel’ might just save their lives.

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If you’ve been following my journey you’ll know that I took the decision early on not to count the days until the end of active treatment, but to make every day count (click here to read lesson 68 where I explain a bit more). Giving back for me isn’t just about raising money, dusting off my trainers and hitting the city streets (although that is still crucial and you can still sponsor me here). It’s about using every bit of my experience to make a difference. Today that meant putting on a Boobette jacket for the amazing charity CoppaFeel and striking up a healthy conversation about boobs. Today that meant encouraging people to make boob checking a part of their daily lives. Today that meant burying my pain in a pill packet and reinforcing the work of dedicated founder Kris Hallenga, who has a treatable, but incurable form of the disease.

As I stood in front of those women, I knew that even if they didn’t remember the slides, the number to text or the latest breast cancer statistics, they might just remember the woman who stood before them with a hot flush, a funny hat and a desire to make a difference. I thought my message might be that little bit more powerful if I was speaking with toxic drugs in my system. I think I was right.

So, ask me what my achievement of the day is now and I’ll probably overlook the getting out of bed part (although I’ll admit, it was key). Back in my fluffy slippers now, I can rest easy knowing I did my bit to stamp out the late detection of breast cancer and give young women the confidence to go to the doctor. 

I’d like to say that had earned me a lie-in, but I have pilates first thing! Here’s hoping the pain starts to ease soon! 

NB: By the way, if you’d like to find out more about CoppaFeel and even get a visit from a Boobette at your workplace or school, please do get in touch. I am on Boobette training at the weekend, so will be a fully-fledged volunteer come Saturday!

Breast cancer lesson number 103: Tax by name, taxing by nature

On By Jackie ScullyIn Chemotherapy3 Comments

Chemo drug Docetaxel (which sounds more like a dinosaur than a toxic infusion) certainly lives up to its more commonly used name ‘Tax’. The side effects appear deliberately complicated, just the mention of it makes most people go a bit pale and the administration of it usually brings about pain. Whether you’re paying it, or receiving it intravenously, tax is no fun.

It started so well – although I think this had more to do with the extra helpings of steroids, which did give me the feeling I could take on the world (or at least the kitchen floor)! There was no nausea (thank you Emend). And, for the first 48 hours I had little more than mini bouts of fatigue, disturbed sleep, hot flushes and a general sense of unease. I had started to think we were going to get on.

Then, at around 4pm yesterday afternoon, the picture changed. All of a sudden, I went from Duracell bunny to flat battery. I lost my taste in the space of about half an hour. I ate early, was in my pyjamas by 6pm and drifted through the last Harry Potter film before making it to bed at a less-than-respectable 8.30pm. I had my first bone pain inducing injection. I wrestled with the bedding, got hot, got cold, got stiff, got up and eventually rolled out of bed when I couldn’t think of anything else to do to get comfy.

Six hours on and I am still trying to work out exactly how I feel. Strangely, it’s like my limbs feel heavy, but my body feels empty. I’m finding it hard to focus and everything from my back and my boobs to my sternum hurts a little bit – like someone is slowly tightening a band around me. I’d like to say I was having a nice time sat here in the garden with the light breeze on my neck. But, it’s not particularly fun.

And, the worst part is, I’m not sure what’s round the corner. I know there are another seven injections to come in this round and that injections mean pain. I know the steroids are over so there is nothing to help me with the housework or the cooking (when my lovely mum heads home). And, I now think I know what chronic fatigue is really all about – and I really wish I didn’t.

I’ve been warned that this drug is tough. All I’m hoping is that I am just that little bit tougher!

I think it’s going to be a long week!

Breast cancer lesson number 101: Nothing takes the past away like the future

On By Jackie ScullyIn Brighter Life List, Chemotherapy, Happiness2 Comments

Change is afoot in the Sloan/Scully household. Now by this, you might think I’m referring to the fact I’m about to start chemo drug Docetaxel. But, there is actually something far more newsworthy happening that I feel I really must mention. The three-piece suite that has been comforting my bottom for the last 21 years – and that I vowed would never make it through our front door in Greenwich – is now outside our house waiting to be taken away.

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Now we are actually parting with my parents’ old grey sofa (complete with embroidered leaves) I do feel a twinge of sadness. We’ve had some good times (curries, TV dinners and movie nights) and some bad times (it’s not good for sleeping on and it has swallowed up a few too many coins). But, overall, it’s been a pretty good sofa. Until Saturday, we are now sofa-less and all I hope is that the new one fits through the door. I’m not sure I fancy recovering from chemo cycle four on the floor!

That brings me neatly to the real subject of today’s blog. Tomorrow marks the official halfway point (not the unofficial one I claimed in lesson 88) in my chemo treatment. Out go red syringes and pink pee and back comes the fear of the unknown I thought I’d left behind in lesson number 49. How am I going to feel by Friday evening? Chances are, it won’t be as well as I feel right now (and by well I mean not in pain). 

Chemo cycle four does sound a lot closer to the end than chemo cycle one, but as the first cycle of my new drug, it feels as though I am right back at the beginning. There are, however, two key differences. Firstly, I’m not as healthy as I was when I started the first course. Will that have an impact? I’ll let you know. And secondly, while I don’t know what side effects will pop up to taunt me, I do know that it’s often the ones you least fear that are the ones that get you the most. I feared the vomiting on FEC. I should have feared the mouth ulcers and the loss of taste! 

I have heard that swapping FEC for Tax (as it is often known) is like swapping a stomach bug for a flu bug. It is likely I won’t vomit, but the muscle and bone pain don’t sound particularly pleasant. Apparently, the muscle pain is caused by the chemo drug itself and comes on in the first week. The bone pain is added in by the injections I have to administer from day 3 to help boost the number of white blood cells in my body (oh yes, this one wreaks even more havoc with the immune system). At least when I was self-injecting for fertility treatment I got eggs at the end of it. Sounds like all I get is pain this time (not sure I will be able to feel my boosted immune system). The list of side effects is long, so let’s just hope the drug is kind. I even get more steroids, which will either help me with the spring cleaning or the piling on of pounds!

The day before my first chemo, I wrote down ten chemo tips I was keen to test. Here’s a quick glimpse into how I’ve got on so far…

1)  Dark nail polish: I’ve painted it on and so far my nails have not fallen off, so I will claim a victory. My big toe is a little on the dark side (under the polish), so let’s hope they last the course. I also have interesting nails for the first time, so even without the
benefits, dark colours work for me.

2)  Sleep caps: They certainly catch stray strands of hair, but they do make it a little tricky to manage those hot flushes. I love wearing them when I am really cold though, even if I look a bit like a gnome!

3)  Senna (or your favourite poo-charming substance): Who needs Senna when there’s All Bran in the house! Ok, so I used it once when I couldn’t remember if I had ‘been’ and then regretted it. It is a handy item to have on standby, but you can’t beat a few mouthfuls of bran with your brekkie!

4)  Flavoured water and ice lollies: It’s nearly summer, so I now have two reasons to eat ice lollies. While I wouldn’t recommend frozen grapes (tried them on chemo 3 to keep my mouth in check and they tasted a bit too weird), I think there is a lot to be said for sucking on something cold while the chemo drugs are going in. It’s a lovely sugary distraction!

5)  Inflatable bath pillow: I think I need to stay in the bath a bit longer. I am still a bit of a speed washer.

6)  Toweling robe: Love it! Not sure I love it because of chemo, but I love it all the same. Who couldn’t love a soft, fluffy robe?!

7)  Queasy drops: Tick! They taste nice, they distract me from thinking about nausea and I don’t get bored eating them.

8)  Pineapple chunks: I would go as far as to say that they taste even better on chemo. Same goes for blueberries and strawberries – and extra strong mints of course!

9)  Ginger tea and ginger nuts: I am finding it hard to tolerate the smell of any herbal teas (so much so I wonder whether I will ever be able to enjoy one again). Ginger nuts are great for baking (as we all know from lesson number 79). But, whether or not they help with nausea, I just haven’t a clue. It would help if I actually ate one when I felt nauseous rather than just when I felt hungry. 

10)  Brow Zings: I’ll tell you when my eyebrows fall out!

The cancer kit list of tips and suggestions is coming, but there is one tip I want to add in for now. Plan in something that makes chemo day a day to look forward to rather than fear. For me, that means baking for the cancer unit so I feel excited about giving something back. I’m also so busy thinking about what ginger chemo cookie (or gingerbread) to bake next, I momentarily forget about the drugs making a beeline for my veins. It certainly works for me, and I hope it will work for you too.

This week it’s out with the old and in with the new. Let’s hope both the drugs and the new sofa are a welcome addition to our little London life.