Tag: chemo nurses

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

On By Jackie ScullyIn Baking, Chemotherapy, Happiness4 Comments

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 108: Here’s to the nights that quickly turn into mornings

On By Jackie ScullyIn Chemotherapy, Happiness4 Comments

Whoever it is that is drafting this current chapter of my life, I am starting to think I might need a few rewrites. Why would you choose the only night in 2014 so far when I was pretty much alone (Duncan was grappling with the night buses and taxis after the England game until the very early hours) to send my temperature out of control. When you’re sitting attached to a digital thermometer wondering whether or not to brave Accident and Emergency on the Saturday night of our World Cup game, you really shouldn’t be alone!

Maybe it was payback for the fact I declared yesterday a complete triumph when there was still an hour to go. Within half an hour of posting my update I started to feel hot – and not in a hot flush kind of way! I took my temperature. It was 37.7. Throughout chemo it hadn’t before reached anything higher than 37. Macmillan advice usually suggests anything over 37.5 is a concern. The hospital card in my wallet says 38 is an urgent call to acute oncology and, most likely, a trip to Accident and Emergency. Throw in a sore throat and It didn’t take long to realise the night I feared most on chemo was here at last. To make matters worse, the thermometer decides to beep wildly when it exceeds 37.5 and was like a siren going off in my head.

Temperatures and signs of illness on chemo are a big deal. Anything that indicates infection needs dealing with – and fast. I have been so lucky with this side of the treatment and I was confused as to why my great day had to go downhill quite so rapidly (trust me, it had nothing to do with the footie). It was then that it struck me. Earlier in the day I had come off my painkillers. The painkillers contained some paracetamol. Paracetamol masks temperatures and improves symptoms. Just how long had I been hiding away a high temperature and a sore throat? Just knowing this made me even more worried.

Last night was one of those nights when I was willing it to be over before it had even started. I feared going to sleep in case the temperature somehow spiralled in the night, but I was too tired to keep my eyes open. I ended up spending the night hugging the thermometer, staying awake and resisting the temptation to text my nocturnal breast feeding mum friends and, of course, my mum. 

The morning couldn’t come quick enough and, when it did, I was delighted to see that my temperature had once again made friends with the thermometer. The sore throat is there, but less dagger-like and more just sore.

Today, I have been mostly operating at the level of a zombie. I have pretended to sleep. I have participated in the most appalling game of frisbee known to man. (I think Duncan is regretting his decision to let me loose in a public space with my unpredictable throwing action!). I managed to run a bath, but failed spectacularly (as did Duncan) at blowing up my inflatable pillow. (On that note, if anyone has one and knows the trick, please let me know. Duncan and I were stumped after multiple attempts. It looks so easy). It’s a day I think it would be best put to bed sooner rather than later.

Of course, it wasn’t all bad news. Ribena broke through the taste barrier today, so being able to enjoy dinner may be just a few days away. I have just completed my last injection for this round (only to discover that there is still a numb part of my tummy that is perfect for needle-related business). And, we have a beautiful lupins in the garden that Duncan grew from seed last year. 

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Here’s hoping for an uneventful night and some useful insights from the oncology team tomorrow about the painkiller/temperature conundrum. I am about to enter the low immunity days (10 to 14), so infection watch is about to get even more important.

Sleep tight everyone. 

 

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

On By Jackie ScullyIn Baking, Chemotherapy, HappinessLeave a comment

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

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.

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

On By Jackie ScullyIn Chemotherapy3 Comments

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 90: Life is short. There is no time to leave important words unsaid

On By Jackie ScullyIn Happiness, Pink hearts3 Comments

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

On By Jackie ScullyIn Baking, Chemotherapy, Happiness4 Comments

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!

 

Breast cancer lesson number 50: Conquer those fears! The chemo chair is actually very comfy

On By Jackie ScullyIn Chemotherapy4 Comments

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I have pink pee. It started off red, and I am so thankful someone warned me otherwise I would have been running all the way to the nurses’ station. That, a mild ‘ice cream’ like headache, a bit of a sore right eye (random and linked to headache methinks) and a general feeling that something weird is going on, is all I have to report. And, most importantly, my morning cup of tea tasted great!

As mornings go, it was a pretty pleasant experience. I have been wondering why there isn’t much discussion about chemo and breakfast. It was only this morning that it struck me. In many ways, this morning was just like any other. No nil by mouth, no random taste issues. Just me and my muesli. When you throw in the fact that you’re not greeted at the hospital with a gown, general anaesthetic or anti-embolic stockings – just a comfy recliner and a hospital wristband – it feels like you’re going in for a nice sit down, not a helping of toxic drugs.

So here’s what happened. Having selected my chair (very excited that I got to choose a window seat), I was quickly handed six pills to swallow (four steroids and two anti-sickness tablets). As soon as that started to kick in, my very friendly nurse talked me through the toxic stuff (getting me to call out my name and date of birth with each one just to make sure they were going in to the right arm). First up there was red-coloured Epirubicin (the reason why my pee is pink) in four giant syringes. Then there was Fluorouracil (5FU) in two smaller syringes. Finally, there was Cyclophosphamide in a drip bag covered with a red sleeve. So, EFC not FEC if you go by order!

I felt good as my PICC line (when you’re sat opposite watching someone get their arm soaked to find a vein, you do feel pretty smug too) was hooked up to a saline drip, which is used to dilute the first six syringes. I felt better when the tea lady came round and I could enjoy my first tea of the day. And I felt even better when the pump beeped to indicate the drugs had run their course. It wasn’t a particularly sociable occasion (was in a bay with three older men who knew the ropes), but with mum at my side, we managed to laugh and smile through most of it. And the nurse – newly qualified in the giving of chemotherapy – was really lovely. Did you know, the children of OBE recipients can get married at St Paul’s Cathedral? (you learn something new every day).

I think my fascination for what is happening to me is keeping me positive. It feels like I am watching a scientific experiment rather than actually having things happen to me. It’s the first part of my treatment that really is all about cancer and, I still feel like I’m not really a cancer patient – I’m just surrounded by them. One day, it might kick in, but right now, I am more than happy asking lots of questions about syringes and watching my PICC line with interest rather than fear as the drugs go in.

On returning home, I was not only greeted by a tasty egg sandwich (yes I broke a rule and ate something I liked post-chemo, so let’s hope it doesn’t come back to haunt me), but I had pretty hats from Suburban Turban through the letterbox and news that my Breast Cancer Care feature has been published in my inbox. Not a bad day so far.

I would be lying if I said I didn’t fear this first session. I think it’s because, up until now, it’s just been about my boob, my tummy, my right arm and my ovaries. Now the whole body (my nice well feeling body) is in on the action, and I’m not sure how I’m going to react. Only time will tell.

Chemo and I are getting on well so far, so watch this space…

NB: by the way, I saw the scalp cooling kit today and hat’s off to anyone who tries it. Looks like an inverted rubber pyrex-style dish and cap attached to a large cooling machine. Glad I chose not to try and delay the hair loss.  

Breast cancer lesson number 49: Get that chemo kit list ticked off and let the destruction begin…

On By Jackie ScullyIn Chemotherapy1 Comment

With the words ‘green sputum’ printed on my appointment card and a hotline to acute oncology in my purse, I know that whatever the next four to five months has in store, it’s going to be memorable – that is provided ‘chemo brain’ doesn’t wreak havoc with my memory.

It’s now the day before chemotherapy – or FEC cycle number one. I feel like I’m in the calm before the storm and it’s a storm I’m not even sure will head in my direction. I’ve got the umbrella, sand bags, windbreak, torch and bottled water, but I can’t see what’s coming. I think I’m ready, but I’m not really sure what to be ready for.

All I know is that, right now, I’m healthy (and cancer-free). My body may look like it’s been into battle (not helped by the addition of PICC), but I actually feel really good (beyond a bit of shortness of breath that I have now declared). It’s hard to believe that with a combination of toxic drugs, steroids and anti-sickness medication, I might start to feel a bit less so.

With less than 24 hours to go, I feel like I should be doing something significant. As it is, I am tidying, washing clothes, composting and generally being a bit boring. But maybe that’s just because, when you’re life is anything but, boring is actually quite thrilling (remember the excitement I had post-surgery in lesson number 19, when I could empty the dishwasher for the first time). It was supposed to be my first day back at work, but with the timing of treatment, we all decided a day in the office might just not be what the doctor ordered. Of course, I do have the urge to brush my hair continuously (just because I can without risk of a clump coming out), I am chipping off my nail varnish so I can paint a darker shade on tonight and I am ticking off items of my initial chemo kit list. I wonder if I will develop a night-before-chemo ritual?!

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Chemo’s version of a kit list (for all kit list lovers) is a sight to behold. For every possible side effect, there is a whole raft of products designed to help you relax, sleep, fake an eyebrow and generally look less like a patient. I do have a burning desire to list them all down now and thank all those who have contacted me with ideas and suggestions. But, given I haven’t even sat in the chair yet, I think this might be a bit premature. I am also planning to set up a page dedicated to cancer kit once I have perfected my chemo kit bag (or carry-round-the-home chemo caddy) to cover all general, surgery, chemo and radiotherapy tips etc, so see this as a little teaser.

Top tips to get you ready for chemo
Here’s what I’ve learned so far…

1) The dentist is your friend: coming from someone who starts to pace four weeks before a dentist appointment, this is me encouraging you to face your fears. If you need more convincing, have a look at lesson number 28. A dentist in battle mode is an impressive sight.

2) Take the Cancer Day Unit tour: ok, so no one is queuing for tickets to this event, but a one-to-one visit at the chemo suite before you start is a great way to learn the ropes and meet the nurses, without worrying about the drugs part. I went yesterday and was pleasantly surprised by the layout, the peaceful surroundings and the thought that must have gone into the design of the unit. The reclining chairs look comfy and the views across London from the chemo bays are wonderful.

3) Put your appointment card and emergency numbers in a safe place: I was congratulating myself at being able to tuck my appointment card (think dentist card from the 1990s) and numbers into my purse, when Duncan pointed out that he often finds it hard to find my purse (quite what he is doing looking for it in the first place is a little baffling). So, I am diligently copying out the details for the fridge door.

4)  Dare to play with your hair: having decided not to go down the scalp cooling route for a number of reasons, I am now sporting a short pre-chemo pixie. Ok, so it doesn’t have to be as bold, but if you have luscious long locks, it may be quite distressing to watch them as they fall. Plus, if you’re going to (probably, although not guaranteed) lose your hair, this is your chance to opt for the cut you never thought you’d have the confidence to try.

5)  Try not to obsess about the side effects: having had two rounds with the oncologist and a good session on side effects with the chemo nurse yesterday, I am determined to let my body do the talking from now on. It’s vital to know what might happen so you can spot the signs and react appropriately, but I don’t want my mind to think they are inevitable.

6)   Be honest about your veins: the disappearing vein act is not one you will want to perform throughout chemo, so if you are worried about your arms (or the fact you only have one to choose from due to axillary node surgery), just ask.

7)  Put your trust in the chemo nurse: within the space of an hour yesterday, my brilliant chemo nurse had me pegged as a workaholic whose biggest challenge would be learning how to be less hard on myself and take it easy if I can’t operate at full speed (don’t know where she got that idea from!). The oncologists are there to extend your shelf life as long as possible (I’m thinking best before 2081!). The chemo nurses are there to make sure you are comfortable, at ease and kind to your body.

8)  Prepare your kit bag: I think I will feel more qualified to comment on this once I’ve worked out what I need for each session, but needless to say, a good book, the iPad, my phone, battery pack (from surgery kit list), lip balm, a drink, appointment card and some sweets (to mask any nasty tastes), are all packed. More on this soon…

9)  Pick up a thermometer and don’t be afraid to use it: if the Cancer Day Unit doesn’t provide you with one, make sure you have one in house (and know how to use it). High temperatures are usually written next to the words SEEK HELP IMMEDIATELY. They don’t call it an emergency ‘hotline’ for nothing. The chemo nurse did mention that it’s important to check your temperature before taking any paracetamol, as the drug tends to mask the signs.

10) Get ready to write: a chemo diary sounds like a great idea to help you get a sense of your ‘pattern’ on each drug. While I appreciate there is a cumulative effect too as your body is worn down by each dose, I think anything that can help give you an idea of what to expect, is a good plan.

Top chemo tips to test
With more than 50 chemo tips filling up my inbox and my ‘secret’ Facebook profile, it will take me a while to sift through and work out my ultimate chemo kit list. To get things started, here’s a quick list of ten things already lined up next to my thermometer that I am interested to try:

1)  Dark nail polish: thanks to my wonderful friends, I look like nail varnish aficionado, when I have only ever really worn one colour in my entire life. I have been practising with dark pink to get used to noticing my nails, and the dark blue goes on tonight. Why you ask? My nails may get brittle and break easily. They could also get darker and get lines and ridges on them. For a preventative measure, it’s one I fully support. After all, what better reason is there to get acquainted with your femininity!?

2)  Sleep caps: my ‘small boobs, big smiles’ branded hat is ready for action tomorrow night. I wonder how long it will take to collect any hair.

3)  Senna (or your favourite poo-charming substance): constipation (especially when you’ve recently experienced it with surgery) is a pain in the bottom. The anti-sickness medication is the major culprit I hear.

4)  Flavoured water and ice lollies: as a water fan, the thought I might not like the taste of it, does make me slightly sad. But, it does give me the perfect excuse to taste test everything in the cordial aisle at the supermarket. Elderflower anybody? My mum has also brought up our childhood ice lolly moulds (basically plastic lolly-shaped containers with chew marks on the old plastic sticks).

5)  Inflatable bath pillow: once I have worked out exactly when I can get back in the bath, this item is top of my ‘be-indulgent-to-self’ list. Think this one may live long after the chemo drugs have left the system.

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6)  Toweling robe: I cannot imagine being so tired I can’t lift a towel, but I have robe on standby and am not afraid to use it!

7)  Queasy drops: another thoughtful present and one that I would be keen to stress test if the opportunity arises. If it doesn’t, I will probably have to check these raspberry-flavoured sweeties out to comment on taste (purely in the interests of science of course).

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8)  Pineapple chunks: could be a snack staple for the next 18 weeks (fresh and healthy sugar kick). Will keep you posted.

9)  Ginger tea and ginger nuts: in the cupboard and will be tested frequently just to make sure they are still fresh :-). Ginger is apparently good for nausea.

10)  Brow Zings: when its rival product Gimme Brow arrives (both from Benefit), I will enjoy working out which make-up product gives me the best Jackie-looking eyebrow. They’ll probably get more attention through chemo than they’ve had in 32 years. Lucky eyebrows. I just hope they don’t fall out!

There will be more tips – many many more! Let’s just see what the drugs want to throw in my direction first.

Chemo, all I ask is that we try and be friends. And, if that is too much to ask, I have queasy drops at the ready and I will smile at every side effect you give me (just as long as I don’t have my head down the toilet).

Let the destruction begin…