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!

 

Breast cancer lesson number 51: Where there’s a will, there’s a way

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What would you crave after a steroid-induced sleepless night? A really good shower. What does a PICC line usually prevent you from enjoying? A really good shower. That is, unless you, like me, have a new plastic protection sleeve as part of your chemo kit list! Meet LIMBO.

Ok, so it looks like I am about to enter a radioactive zone. But, as a sleeve for keeping my arm dry, this rather odd tube is pretty effective. And, most importantly, the shower was really good (worth mentioning I did not shower fully clothed, but I don’t think you’d want to see the rest!). I won’t dwell on the fact I am now over-analysing every part of me to make sure nothing is falling off – or the fact I cut my legs shaving for the first time in about a decade.

If I’m honest, the last 24 hours is not something I would like to repeat (only 21 days to go until I have to sadly). I think I have got off lightly so far, but here’s the side effect list. It’s steadily growing…

a)    A nasty bout of nausea lasting from 4.30pm until about 11pm (but my ‘three vomits in a lifetime’ record is still in tact thankfully). We had some emergency extra anti-sickness meds, so these were taken and made me feel a lot better.
b)    A bright red face (maybe hot flush, maybe drug reaction, definitely not temperature). More a source of amusement rather than a pain.
c)     A sleepless night (for me, Duncan and mum). Steroids made me wide awake, but my body was screaming for sleep. Too weary to read or get up. Too bright-eyed to rest.
d)    An ice-cream headache. Easing this morning thankfully.
e)    A dry mouth. I feel like I have consumed two bottles of wine and haven’t drunk any water for days. This couldn’t be further from the truth.
f)     Weird taste sensations. Tea still tastes good, but it feels like it has been diluted down (if that makes sense). The taste is there, but my palate has been suppressed. I know Weetabix tastes like cardboard on a good day, but today it was hideous.

The chemotherapy hangover on its own is not particularly exciting. Add in the continuing effects of surgery and the ‘trying-to-get-comfortable’ game is not particularly pleasant. I roll onto one side in bed and find PICC line. I roll onto my other and the odd sensations in my bad arm and new boob kick in. I lie on my back and my tummy pulls through the body corset. In the end, I ditched the corset in favour of some Bridget Jones-style pants and felt a little better. Thanks to more than 30 wonderful university friends, we have a new mattress arriving today (the last one was given a shelf life of 10 months when I bought it more than a decade ago), so hopefully that will help us as we search for sweet dreams tonight.

Of course, it’s not all bad. I don’t have a temperature. The pink pee is getting lighter. My appetite is still there (even if the food tastes weird). There wasn’t a strand of hair in my sleep cap and I’m even getting chemo tips from the boss. Plus, flat lemonade is really exciting. The weirdest part is just not knowing what to expect next. Thankfully mum and Duncan aren’t staring at me constantly for the next reaction.

Having popped eight pills this morning, I am hoping for a quiet and better day. The queasy drops are working, the baby toothbrush is kind on my mouth, and today’s mission is fresh pineapple (before settling down with a good book and a film).

I’m still smiling. If this is it, I will be very lucky. If it isn’t, I may need to dig a bit deeper and cling on to every bit of positivity I have. Here’s hoping for a better night.

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

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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…

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…