chemo cycle

Breast cancer lesson number 115: Think positive and positive things will happen

Strange as it may sound, I am starting to enjoy chemo day. This has nothing to do with being hooked up to toxic drugs and a saline solution (oh yes, the beautiful saline) or visiting the hospital (third day in a row) and everything to do with the positive routine I have established for myself.

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It starts – after a steroid-fuelled restless night – with the baking. Today, we tried out a chemo cookie recipe from one of mum’s beautiful friends alongside an experimental lemon and ginger muffin recipe (complete with ginger and rhubarb jam tucked away inside). Both were topped off with a drizzle of melted lemon chocolate. It always feels good to do something for other people and the thanks I got at the unit today meant the world to me. I know some of the cookies ended up as one nurse’s lunch (she was too busy for a break). I also got a wonderful phone call earlier thanking me for my latest pink heart, so I have pretty much smiled all day long.

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Next up is a good walk. By Sunday, I will probably find it increasingly hard to get round Greenwich Park due to the bone and muscle pain, so today is a good day to make the most of my legs while they are still working! In the absence of tastebuds, exercise has been my comfort eating. I do it to feel better and it is certainly does wonders for the waistline and the soul.

People often worry about what to eat before chemo. For me, I like to keep things simple. A bran-based brekkie keeps the constipation at bay and a simple lunch (with an afternoon appointment) means you go well fed, but without having eaten anything you’d avoid for life if you saw it again. My time at the chemo unit is always packed with planned-in treats!

By the time I reach the hospital, I am ready for action.

For those who have never been to a cancer day unit (and I hope if you haven’t, you never will), here is a quick glimpse behind the scenes:

1)     First you arrive, book in, hand over your appointment card and receive a hospital wristband in return (printed out of special wristband paper).

2)     Next, you wait in the lounge (this time in front of Wimbledon) until the drugs have been delivered and the chair is ready.

3)     Once in the chair, the nurse allocated to your zone takes your blood pressure and checks the oxygen levels in your blood.

4)     Providing all is well, the anti-sickness meds (Emend and Domperidone in my case) are administered.

5)     Once they’ve settled in the stomach, the PICC line is flushed and the drugs are hooked up to both a pump (so they can be released over time) and the PICC tube.

6)     Then (with Docetaxel), you get a good hour to eat (lollies and muffins), drink (tea, water and hot water) and chat.

7)     Summoned by incessant beeping from the pump, the nurse comes back to do a final saline flush.

8)     After everything has been disconnected, the rucksack-sized pharmacy bag arrives, complete with eight injections, and enough pills to make your stomach rattle.

9)     Before being released, the last job is to pick up the appointment card. We think mine may have gone home with another Jackie, so I had a nice new one to take home today.

And that’s it. Providing you don’t have an allergic reaction to the drugs, it is a fairly pleasant experience.

Back home, I am happy in the knowledge I have five behind me and just one poison to go. I have started planning my last chemo day (let’s ignore the fact I have radio and 10 years of hormone therapy for the moment) and I am pretty excited. This is the last cycle that ends with another poisoning. And that means the end of chemo (albeit six weeks away) is finally in sight.

It’s been a happy Friday for me. And, I hope it has been a happy Friday for you too!

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

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 102: It’s better to give than receive, particularly on chemo day!

Having been awake pretty much all night on a steroid-induced high (thanks to the dosage being doubled), I wasn’t expecting today to be as productive or as enjoyable as it has been. Especially with the words: ‘Docetaxel cycle one’ ringing in my ears.

The good thing about steroids, however, is they don’t stop working when you wake up. With four more at breakfast, I was answering emails, sweeping the floor, clearing papers and popping my next batch of chemo cookies in the oven (this time using a recipe all the way from Germany) all before 9am. I could have run (well, maybe jog a bit) all the way to the hospital, but instead decided it might be wiser to conserve my energy and just take a leisurely walk to the train in the sunshine through Greenwich Park.

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For me, today was as much about giving as it was receiving, and that fact makes me smile. I handed over a tin of sugary ginger cookie treats to the cancer day unit and wore my Breast Cancer Care T-shirt to raise awareness of this superb charity (click here to find out what they’re up to or visit my Justgiving page to help me raise funds to support their great work). In return, I got a slow-release infusion of T (the drug is administered over a longer period, with no red syringes in sight), some anti-sickness meds (including miracle worker Emend), eight pre-filled syringes to start self-injecting on Sunday (to boost my immune system) and what I can only describe as the world’s largest sharps box! It needed its own bag to carry it home.

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How do I feel now? A bit tired, a bit anxious about how the next week will pan out, but otherwise fine. The calm before the storm is a strange place, and I just hope the storm doesn’t involve nausea, chronic fatigue, bone pain, muscle pain, mouth problems and peripheral neuropathy. I have survived the first part by not having an immediate allergic reaction to the new drug. And, I have done what I can to lessen the side effects. I have had some exercise, taken my pills, sucked on a rather strange mango and passionfruit (or at least that’s what it said it was on the packet) ice lolly while the drugs went in (it’s a bit like the cold cap for the mouth, but more bearable if you actually suck on something flavoursome) and am now relaxing in the garden with a scarf over my head and shoulders so I don’t get exposed to the beautiful sunshine.

The good news? The cookies went down well (so much so I couldn’t locate the tin), the cancer day unit makes me feel like I am returning to see old friends and, at last, I got the free lunch I have heard so much about. There wasn’t a lump of mash in sight sadly, but they didn’t scrimp on the ham. I even returned home to a wonderful parcel of hats from a new friend I met at Breast Cancer Care’s Younger Women Together event back in May.

I am strong, so let’s just hope I am stronger than the drugs currently working their way around my body.

Only time will tell.

Wish me luck!  

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

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.

Breast cancer lesson number 100: Don’t expect your top to stay on for long!

I should have known. It’s a rare trip to the hospital that doesn’t involve me stripping down to my waist. But, when you’ve dressed for a pre-chemo blood test and a chat with the oncology nurse, you just don’t expect to end up in a gown.

In truth, this is a strip I could have prevented. I did, however, think it might be time to mention the fact that when I try to sleep on my left side, my heart starts to race. I knew it wasn’t normal, but with a PICC line in my arm, I just thought it was a side effect (that could be prevented by me sleeping on my back). As it turns out, even with a PICC line, it still isn’t normal.

So, instead of my usual trip from the oncology department to the pharmacy to pick up the next round of pills, I found myself next to a man with a sling waiting for a chest x-ray. Quick change and x-ray blast done, I then had to make my way to another new (to me) area of the hospital. This time haematology! I am certainly clocking up those departments.

As it turns out, I’m very glad I did get the chance to wear yet another gown. The PICC line was 3cm too far in to my body, which means that every time I turned onto my left side in bed, it was getting a little too friendly with my heart. Thankfully, it’s not hard to fix and, in a quick 15-minute appointment, the nurse pulled a bit of the tubing from the hole in my arm and kindly redressed the lot. Given I had only had the area redressed two hours earlier, my arm is still throbbing in protest! The only slight problem is that the tubing quite likes finding its way back into my arm. For now, it is taped in place, but I have to make sure it doesn’t slip back in.

Of course, it wasn’t all gowns and sterile dressings. I met one of the beautiful ladies from the Haven exercise video (see lesson 94) in the oncology waiting room and had a lovely (albeit quick) catch up. The oncology nurse was brilliant too and is going to see if she can dig out some menopause tips for me given my clinic appointment is booked for July. And, I am loaded up with painkillers for chemo round 4. Only downside? I didn’t like what I saw on the weighing scales (we always have to be weighed to check that the chemo dosage is appropriate). More exercise for me and less quiche making (we have been eating leftovers from Sunday’s lunch – pretty much half of the table in lesson 99 – for the last three days).

So, with the PICC line sorted and the painkillers in the kitchen, I am ready for chemo 4 on Friday. Let’s hope my blood agrees…

Breast cancer lesson number 98: If you can’t stand the heat, find someone to help you cool down

With a trip to the menopause clinic on today’s agenda (in yet another part of the hospital – this time Women’s Services) I was planning to fill this post with practical tips to help those going through both an enforced chemically-induced ‘change of life’ and the real thing. Trouble is, you don’t learn much when you don’t get further than the waiting room!

I always like to be punctual, but while turning up two minutes before an appointment is fine, two months is a little on the eager side! Whether it was a glitch in the admin system or an attack of chemobrain (which I am still trying to convince myself won’t affect me), I will never really know. But, let’s just say, the date and time in my diary (agreed over the phone last week) didn’t match the system or, in fact, the letter they’d sent me following the call (that I had failed to scrutinise).

I had a good laugh with the receptionist (who thankfully saw the funny side too) and it wasn’t a wasted trip (I got a PICC line flush and a beautiful back and foot rub thrown in from a kind Dimbleby Cancer Care lady), but the problem I now have is, the appointment is so late in my chemo regime (more than a week after my last poisoning) it almost isn’t worth having. Plus I am now facing two more months of hot flush fuelled nights. Trust me, two nights is enough! I could, of course, go to discuss the fact I may get more sweats on Tamoxifen, but I’m not sure the NHS would appreciate a hypothetical discussion about side effects I might get.

Sadly, the cancer card does not work in all parts of the hospital and I left with little more than a red face – probably due to the hot flush that had appeared as if on cue in protest. So I did what any woman in need of a natural cure would do and I rejoined a beautiful friend and her daughter (who I’d enjoyed a 30-minute pizza trip with an hour earlier) for a consolatory ice cream. It certainly didn’t magic up a new more useful appointment, but it was a brilliant temporary fix.

Hopefully I will be able to ask the oncology nurse for some advice next week (can you really be examined for hot flushes anyway?). In the meantime, I have turned not to Dr Google, but to the Young Breast Cancer Network Facebook group. Within a matter of minutes I was inundated with tips. My favourite has to be a lady care magnet, which you attach to the front of your knickers! Sounds strange and a little heavy, but I am absolutely going to try it.

I’ll let you know how I get on. Just don’t ask me about it in polite company! And, if all else fails, at least there is ice cream!

Breast cancer lesson number 90: Life is short. There is no time to leave important words unsaid

I am grateful that last night was just a night of sweats, broken sleep and nasty nausea rather than a night wedded to the washing-up bowl (I must stress the bowl has been retired from active washing-up duty in case you were worried). And, looking at the faces of mum and Duncan in the morning, I think I wasn’t the only one who was grateful!

I made it through. But I had to dig deep. The nausea and night sweats were among the worst I have ever endured. The Aprepitant drug worked wonders on the sickness and the quick hat and sock changes helped with the hot flushes. But there is one other trick I’d like to share, which – in between the waves of nausea – made the whole experience memorable in a more positive way.

I have never been one for counting sheep or filling my mind with the colour blue in an attempt to drift off. So, last night I introduced a new technique. From the beginning, I listed out all the wonderful and kind messages and gestures people have sent through over the last four months. By this, I don’t just mean the obvious. By this, I mean the well-timed tips, the lucky pre-surgery safety pin, the comment from an old schoolfriend about what she thought of me back then and how I hadn’t changed, the thank you from a girl I once helped in a small way and never thought much of it. Just yesterday, a lady I had met a month ago and showered in cancer-related tips stopped me in reception to thank me for my kindness. Those words meant everything to me. Each one of these moments has made an indelible mark on my heart. And, yesterday, I used them to build a patchwork quilt of happiness to comfort me at my lowest ebb. The great thing is, when I got out of bed this morning I smiled knowing that I have just scratched the surface, with many more patches to add.

Being at the receiving end of a lifetime of kindness has got me thinking about just how much we really say to those that inspire us and make us smile. When was the last time you turned to a friend and thanked them for just being there? When was the last time you contacted an old acquaintance and told them just how big an impression they have made on your life? When was the last time you thanked someone and meant it from the bottom of your heart? People can’t guess you’re your thinking unless you tell them. When the business of life gets in the way, it is hard to step back, reflect and not take all those you love and admire for granted. But, I can tell you now, there is so much I want to say to people while they are still around to hear it! People come and go in life, tucked away in chapters. But, their kindness will live on through you. I’d love to think that if someone were to cut me open (in a nice, non-cancer-surgery kind of way), I would be made up all of the brilliant people who have touched my life.

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So, I have chosen today, laced as it might be with a cocktail of drugs and a vat load of liquid, as the day to hand out my first pink hearts. The first is for my astonishing and truly wonderful mum who is one of the most beautiful people you’ll ever meet. She may weigh less than me currently (although we are having words), and she may not be able to take the pain of a cancer diagnosis away, but she has made living with it as comfortable and relaxing as possible. She has put her life on hold, so that I have the chance to get mine back. As a daughter, I have not always thanked my mother quite as often as I should. But she means everything to me and I plan to spend the rest of my days reminding her of that. While I won’t share the contents of my letter with you, I will share one line: ‘Life is no easy street, but you have made walking down it, so much more enjoyable.’

And, the second heart? You’ll just have to wait and see! I will also be posting more details of my pink heart plan (first mentioned in lesson number 30 – click here) in the weeks to some to inspire others to send ripples of kindness all across the world.

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All I ask is that you take a moment of your day to thank someone who matters to you. What is it about them that makes you smile? What it is you should have told them years ago, but never thought to mention? How have they helped make you the person you are today? I guarantee you’ll feel good saying it – but not as good as the person hearing it (especially if it’s for the first time).

Make today the day you start following your heart. Trust me, there’s no time to lose.

NB: it will take years to deliver all these hearts, so do bear with me. The accompanying letters are all handwritten and contain a piece of my heart. Plus, I have to make sure I don’t get arm ache! 

Breast cancer lesson number 89: A chemo day can be a good day

Believe it or not, today was a good day. I should qualify this by saying that most good days do not come with a helping of toxic drugs on the side. But as days on active treatment go, it was a complete success.

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I passed my blood test (yay!). My levels are good for someone on chemo (could be seen as a compliment). I had a lovely lunch with my lovely mum (that I could taste) and a walk along the river (in the sunshine). I met a friendly nurse who furnished me with a whole rucksack full of pills, mouthwashes and eye drops (including the mighty Emend/Aprepitant for vomiting). I got the chemo drugs (yay-ish because it wasn’t delayed) and actually waved goodbye to Epirubicin as the last red syringe was drained into my PICC line. I now know the name of the lovely lady who does my PICC line flushing every week (she doesn’t wear a name badge and after a few sessions, I felt it would be wrong to ask). I have sorted out my appointments for the next round (chemo is moving to a Friday). And, most importantly, the chemo unit LOVED the ginger cookies (although you could question whether or not a unit of patients with questionable taste buds is a robust test).

I also discovered a few new things (and we all know how much I love learning things)! One, there is such a thing as a menopause clinic, because I’ve been referred to it in an attempt to help me get a convincing night of sleep! (watch this space). Two, baked goods (with ingredients listed) are welcome on the unit (I did wonder whether health and safety would get in the way). Three (not the best revelation), the next set of chemo cycles requires me to have around 24 injections to help keep my white blood cell count at a good level (nothing like a few sub-cut injections to remind me of those fertility days). And last but not least, according to my stats, somebody discovered my blog by searching ‘extraordinary boobs’. Whoever found my blog by searching for this, all I can say is: great search terms (I wimped out after Googling it and sizing up the main subject matter) and I am sorry that I really don’t have extraordinary boobs. They are certainly not ordinary, but I am not sure that is what you were after!

Here’s a piccie of me in the unit ‘copping a feel’ (albeit not exactly going for a full grab) to show my support for the wonderful charity Coppafeel (click here), which was set up by a wonderful women called Kris, who was diagnosed with Stage four (advanced breast cancer) at the age of 23. Her mission is to make sure young women are more aware of their boobs, completing those regular checks that could just save their lives. It’s a simple and powerful message, and one I am going to help her spread over the coming months and years.

I may be nibbling my ginger cookies at a rapid rate to tackle the nausea inside me, but I think, as days go, it was a goodie. Let’s just hope I don’t have to make friends with my old washing-up bowl again tonight!

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I hope you’ve all had a good day!