Tag: chemo side effects

Breast cancer lesson 157: It takes time to heal

On By Jackie ScullyIn Chemotherapy, Moving forward, Reflections on cancer3 Comments

I have lost a nail. Now, if this had been as a result of an ill-timed run up the stairs or poor football move, it wouldn’t exactly be headline news. But, given this is the first chemo nail to fall (a toenail thankfully), it is a moment I feel I have to acknowledge.

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It’s five days on from the end of active treatment and I feel I having been making good ‘moving forward’ progress. The cards are down (although Duncan now thinks the living room is so bare it looks like we are moving out not just on)! The house is so clean you could eat a meal off the floor (not something I am going to test mind you). And, I feel fitter, healthier and a little bit hairier.

The nail incident, however small it may seem, is a sign though that cancer (or more specifically its treatment) isn’t quite done with me yet!

It does feel a little mean that you can often start looking a little worse for wear when you’re not actually being treated. I am currently on ‘boob watch’ to see whether the radiotherapy is going to do any real damage to my skin (it is just a bit red and angry at the moment). I still can’t sleep properly. The menopause is still in control of my body. My hands and feet still feel a little disconnected. And now, it seems, I am also on ‘nail watch’ (which currently involves tapping and fiddling with my nails every five minutes to see if anything else drops off). At least my hair has a thin covering of hair to keep me distracted.

The thing is, to a cancer patient, nothing about the above is particularly unusual. We understand the side effects will last for a while (and signed a form to let them). We know that underneath the smiles and the ‘back to normal’ activities we may have to cope with pains and twinges. We know it will take time for us to trust our bodies to know a cold is just a cold and a cough is just a cough. We know our lives, while brighter and enriched in many ways, will never quite be the same again.

Today, it was just a nail. Tomorrow, it may be something else.

One day, I will want to forget. For now, I need to remember, so I can give my body the attention, the tools and the time it needs to heal.

I hope you’ll give me time too.

Breast cancer lesson number 79: In search of the ultimate chemo-friendly ginger cookie

On By Jackie ScullyIn Baking, Chemotherapy, Happiness13 Comments

Anyone who knows me well will know that there’s nothing like a 250g slab of butter, a plastic spatula and a kitchen lightly dusted with icing sugar to make me smile. From grannie’s special shortbread and melted stilton and ham rolls to chocolate orange cake and even the odd hand-rolled fondant rose, if it involves a lot of measuring, plenty of bowl licking (oh, raw sponge how I love you) and a little bit of icing, I’m there.

As you might have guessed, I love to bake. The emphasis is usually on taste not presentation (although Duncan was stunned when I once produced a cake that actually ressembled Thomas the Tank Engine for my lovely godson), and there have been more than a few disasters (the less said about the collapsed Quiche Lorraine, the broken brandy baskets and the misshapen macaroons the better), but for me, there is no better smell than the smell of freshly baked goodies!

The trouble is, I love to bake with a purpose. And, when you’re tucked at home with a surgically-flattened stomach and no desire to enlarge it, that purpose is not so easy to find. I will certainly be doing another of my annual charity bake sales in the not-to-distant future, but for now, I am just keen to get creative while filling someone else’s tummy as well as my own. Plus, I have also started to notice that my new right breast is taking a rather larger shape than my left. With tummy fat all over the place (including in the new boob), I have more than just a bulging belly to worry about.

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Last night, however, I went to bed with a dream and I woke up with that purpose. Yes, after discovering that opening the bedroom door can do wonders for night sweats, I had a comfortable night. It also reminded me that I am stronger than the chemotherapy drugs dancing away inside me and now is the time to start fighting back. With chemotherapy cycle three just 12 days away, I am determined to triumph over every single side effect thrown in my direction. That means Difflam on tap (mouthwash for mouth ulcers), ice lollies and frozen grapes (yes, still focusing on the mouth) and a lot of ginger (for the sickness).

For FEC chemo cycle one, having discovered the medicinal benefits of ginger, my beautiful and thoughtful mum arrived on the doorstep with not one, but three bags of homemade ginger biscuits (plus a box of tasty cookies from a friend). I dutifully polished of the lot (with a little help, but not much) and the experience has got me thinking. What is the tastiest, most nausea-relieving and chemo-friendly ginger cookie in the world? Does it exist? Does someone have the recipe lurking in their family history? Is gingerbread better than a ginger cookie? And, could I make some to deliver to my chemo unit to help other chemo patients (and inspire others to do the same)? Why simply take on my nausea, when I can try to help everyone else too?

Of course, I am not ruling out bought ginger biscuits (or ginger bread for that matter). But, there is something about a lovingly-prepared homemade bake that I think might just have the edge. I have heard great things about the Fortnum and Mason stem ginger biscuits and do love a good Ginger Nut. Question is, do they have what it takes to banish waves of nausea from the chemo suite?

So here’s where you come in. Can you help me find the perfect ginger-flavoured treat? In return, I promise to bake every recipe and share my favourites with chemo patients (and maybe a few friends, family members and neighbours too) J. Plus I thought the whole exercise might be quite useful to my wonderful and kind sister-in-law-to-be, who just so happens to have a ‘slight’ addiction to biscuits of a gingery kind! Please post here or send me an email via the ‘Get in touch’ page and I will get cracking.

Spatulas at the ready, it’s time to turn on the oven and turn off those chemo side effects!

Breast cancer lesson number 54: Be yourself, not a science experiment

On By Jackie ScullyIn Chemotherapy3 Comments

If philosopher Francis Bacon had been forced to undergo a course of chemotherapy treatment in his lifetime, I believe he may never have penned the immortal words: ‘knowledge is power’.

Never one to shy away from polysyllabic medical terms and textbook-like content, I prepared for this five-month stretch of my treatment in the way I would a school exam. Chemotherapy is, however, one aspect of my treatment about which I wish I knew a little less.

The Breast Care Nurse was spot on when she handed me the mandatory chemotherapy booklets and compared the reading experience to that of a examining the leaflet that comes with a packet of paracetamol. The trouble is, if you present someone (on more than one occasion) with an eye-watering list of side effects, they will wake up every day after starting treatment, expecting something to have fallen off.

It’s four days after FEC round one, and I am delighted to report that nothing has fallen off. I’m still pretty much in tact. The pot of steroids is empty, the anti-sickness pills are back in their packets until round two and the only unusual turn of events is that my house looks cleaner than has done since we moved in. Who would have predicted that six syringes and a bag of toxic drugs would have given me the desire to clean not only the kitchen floor, but the bedrooms and the fireplace too?!

Why is it, then, that I still feel a bit like a science experiment, being examined in my very own Jackie-sized petri dish? Every morning in the shower, I tug at my hair to make sure it’s still there. I count the strands left behind on my hairbrush. I stare down the toilet analysing everything that passes. I take pride in commenting on the lightening of my pee. I diligently touch up my dark nail polish. If my eyes water as I eat dinner I blame it on the chemo. I think too hard about the importance of an itchy ear. And, my skin is so well moisturised, I’m surprised I don’t slide out of my clothes.

Far from making me unwell (yet), chemo has successfully managed to magnify my imperfections (imperfections I probably had before the drugs went in). I now feel the urge to discuss every bit of my body. But the truth is, apart from a mouth slowly filling with ulcers and the odd taste change, my bodily functions are not particularly exciting. To be honest, you probably have more noteworthy activity in your own toilet bowls. Even the dreaded constipation/diarrhoea dilemma (is it staying in or running out?) is a bit of an anti-climax. I’d find reporting on a cold more exciting.

I think mum and Duncan are still expecting fireworks. Part of me is still expecting fireworks. Admittedly, there are 17 weeks left in this drug-fuelled challenge. But, if the last few days are anything to go by, the only explosions we’ll be seeing this year are the ones in the sky on November 5.

So, my advice to anyone currently preparing for chemo is this: take the leaflets, read the leaflets and then forget the lot. Information is not your chemo buddy. Get a thermometer and some anti-bacterial hand gel and don’t worry about your skin flaking off. Enjoy every day and trust your body – not a list of symptoms – to tell you if it needs a bit more TLC. Life is way too short to waste time starring down the plughole. I found it so tedious, I ended up attacking it with some drain unblocker (oh, thank you steroids for this temporary cleaning high)! 

You wait. My hair will start falling out now… 

Breast cancer lesson number 53: There is a time and a place for playing the cancer card

On By Jackie ScullyIn Reflections on cancerLeave a comment

Every patient facing a cancer diagnosis gets a card (I like to think of it as the cancer equivalent of Monopoly’s ‘get out of jail free card’). It’s a card that when played too often can all too quickly become meaningless and frustrating. But, it’s also a card that, when played tactically, can open doors and make things that otherwise seemed impossible, suddenly very possible.

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Up until now, I have been reluctant to call in the card. I don’t want to scream and shout and parade my illness in a way that makes people uncomfortable. I just want to be me. While there have been a few notable exceptions – 95% of which involve couriers and delivery drivers, absurd delivery windows and strange demands ­(the thought that someone might actually dismantle my new kitchen table if it wasn’t delivered on the day of an important hospital appointment being one) –­ my card is pretty clean (and my conscience too).

That is, until today. Today I needed the card and I was more than happy to play it. Having had another steroid high of a day (yes, beyond a constant morning mouth feeling and strange taste sensations, I am doing pretty well after my first bout of chemo), mum and I decided to catch the boat from Greenwich into the city for a lovely long walk along the river. The sun was shining and it was wonderful being carried along by the crowds. It felt normal and we felt normal. It wasn’t long, however, before we realised there was something missing. Two little white anti-sickness pills!

Having experienced a nasty helping of nausea on Wednesday night, these were two pills I wasn’t going to miss. The trouble was, time wasn’t on our side. When we arrived at the jetty to catch the next boat back we were told the boats were fully booked for the next hour. With the memory of Wednesday still firmly imprinted in my mind, we aborted plan a) (quietly sit and wait) and opted for a more assertive (while still pleasant) plan b).

As soon as the words ‘cancer’, ‘chemo’ and ‘pills’ passed my lips, we were escorted to the nearest seats and looked after my a lovely chap in a bright orange high-vis jacket. He squeezed us on the next boat as a ‘priority case’ and we got back just in time for me to take the drugs. I will be forever thankful to this tall, dark, bright-orange clothed man and am now looking forward to – rather than dreading – the smell of sausage casserole filling the kitchen.

It may seem like a small incident, but that moment taught me the real power of ‘playing the card’. I felt weirdly untouchable and important. When I had actually got over the guilt of knowing it was my own fault for forgetting the pills, however, I also felt a little sad. It’s rare that I am reminded of the seriousness of the cancer that tried to take my life. The truth is, you don’t have to be being treated for the illness to know just how scary the whole thing is. When cancer comes into play, everything feels like a race against time. Trust me, it’s a powerful card, and it’s one I hope you’ll never have to play.

There was another reminder waiting for me at home of the doormat – confirmation of my histology results. For the first time, printed in black and white were the words: ‘multifocal grade 3 invasive pleomorphic lobular carcinoma with admixed LCIS’. As well as my dominant tumour, my naughty breast was also filling up with LCIS (lobular carcinoma in situ). With the LCIS and the invasive mass, the total tumour measurement came to a total of 60mm. Add in the lymph node involvement and that puts me in the stage 3 camp. High-grade, aggressive, and not very fun. The good news? It was stage 3 (click here for the science) and not 4 and it’s out. I have a life – and a wedding – to look forward to and my fight will end. I am lucky. But, I know there are many people who are not so and, for that, I am very sorry indeed.

It was a letter packed with medical terminology. But, it still made me smile. Tagged on the end, after talk of ‘macrometastic disease’ and ‘adjuvant therapy’, was the phrase: ‘On examination her wounds have healed well with good cosmesis’. Thanks to the wonders of Wikipedia, I looked up the word ‘cosmesis’ and discovered it to mean: ‘the preservation, restoration, or bestowing of bodily beauty’. In short, the new boob is pretty good looking. I’ll take that. It’s in a medical letter. It must be true. It may not have a nipple, but the shape is there.

Of course, fuelled by my steroid high and no longer fearing the nausea I didn’t dwell on the letter or the boat trip. Mum and I proceeded to clean the kitchen floor (until I cut a finger on my right hand and went racing for the Savlon), do the washing, hang out the washing, change some lightbulbs, do some composting and cook up some Turkish delight. The dinner is now on. Let’s hope when the steroids wear off tomorrow, the positivity and productivity continue. There’s publishing work to get back to next week!

Cancer doesn’t do days off. In most cases, a pill or a layering of antiseptic cream will bury it in the background for a moment, but it never goes away. At some point, you will need that card. Hold it safe and play it wisely ­­– and dream about the day when you won’t need to play it again.

Breast cancer lesson number 43: Cure, Help, Empower, Me to Overcome = CHEMO

On By Jackie ScullyIn Chemotherapy5 Comments

With the embryos now packed away in the freezer, one pixie haircut and one PICC line insertion are all that stand between me and chemotherapy. Cycle number one is planned in for next Wednesday and, I must confess, I’m already trying to imagine the side effects. Up to now, apart from a bit of pain, a lot of needles and enough drugs to stock a pharmacy, I have felt well. A week today, whether I like it or not, that’s all about to change.

They say the fear of chemo is often worse than the act of going through it. All I can say is, let’s hope they’re right (and that it’s not the cancer equivalent of ‘childbirth is fine’ so we all go into it with blind optimism). I have a rather vivid imagination and it’s currently in overdrive. This is in no small way to do with the consent form – or should I say dossier of potentially debilitating side effects. Beware drugs that come with consent forms! After seven pages listing out all the life-changing conditions I might end up with, it began to hit me that this is no normal prescription drug. This might actually be a bit grim.

For those wanting to know a bit more, chemotherapy is a systemic treatment using anti-cancer drugs. Its aim is to go after cancer cells in the whole body (not just the breast) and interfere with their ability to divide and grow. I will be going through what’s called adjuvant chemotherapy. This means it’s an additional treatment to reduce the risk of breast cancer returning after it has been removed (in some cases people have chemo before surgery – known as neo-adjuvant chemo – to slow the growth or shrink a tumour).

So, what awaits me in the chemotherapy chair? I will be undertaking something called the FEC-T regimen. First, I will enjoy three three-week cycles of FEC (lucky me). This is a combination of the following drugs:

1)    Fluorouracil (or 5FU)
2)    Epirubicin (a nice red liquid)
3)    Cyclophosphamide

Then, once I have got used to the way my body reacts to the above drugs, I will  move on to T or Docetaxel (one brand name is Taxotere, hence the letter T). This takes longer to administer and stays in the body longer (it gets better and better). And, I mustn’t forget the supply of anti-sickness drugs and steroids you get thrown in to keep said chemo drugs company.

In truth, the drugs are just words. It’s the list of side effects that leaves an impression. Everyone is different and no one knows how they are going to react. I know I’m strong, I know I’m positive, I know I will work when I can – and my consultant seems to think I’ll be just fine.

Bearing in mind, you probably wouldn’t take a paracetamol if you gave the pill packet too much attention, factsheets and side effects booklets are to be regarded with some caution. I will probably get some side effects, but if I get a lot, I will be more than a little unlucky and will be trading in my body for a better model at the next available opportunity.

The potential effects are many and varied. Rather than plough back through the consent form, here is my edit of the highlights (or lowlights depending on how you look at it):

1)    I will lose my hair: it seems the cold cap that is available will merely delay the inevitable, so I am going to lose my hair in style! Pre-chemo pixie is planned for Saturday and then, by the end of April, it will probably have disappeared. I am not particularly worried about this, am enjoying shopping for hats and am waiting for an opportunity to stand on a cliff with my bald head. Quite fancy not having to shave the rest of my body for months on end and it will, as a friend said, be interesting to see the shape of my head. My only fear? It growing back grey. At 32!

2)    I will get constipation: I doubt I’ll be able to beat eight days after hip surgery (not sure I want to try) so it will be back on the Laxido I’m sure. Whoop! You can also go the other way (now that would be a change!).

3)    I may get an infection: if my white blood cell levels drop, I will be more susceptible to infection. I plan to avoid the Underground where possible and have been acquainted with my new best friend, Mr thermometer. Apparently, if my temperature goes above 38 degrees, I will need to get to the hospital… and fast!

4)    I may vomit: having only vomited a few times in my life, I hope my strong constitution stands me in good stead. I certainly won’t be eating my favourite foods around the sessions, just in case I see them again ­– and then never want to eat them again. I hear the anti-sickness drugs can be effective but they can cause constipation (see 2).

5)    I may get fatigue: it’s fairly common, and the cumulative effect of all the treatment may take its toll.I plan to walk as often as I can and, of course, not operate any machinery if I feel tired (maybe just a kettle, a TV, a computer and a mobile phone).

6)    My sense of taste could change: I must say, I am intrigued by this side effect. Some say things taste like metal (yum) and others say they become addicted to sweet things. I better make sure I don’t overdo the baking, just in case. Let’s hope I don’t get too many ulcers and sores (another joyous side effect), so I can actually eat something.

7)    Docetaxel can cause bone pain: If it’s anything like my original hip pain or nerve pain, I will be willing these cycles to end!

8)    My hands or feet might start to tingle: This would be another treat from the wonderful T and is known as peripheral neuropathy. I am quite fond of my hands.

9)    Chemo brain: Chemo, if you’re listening, please don’t take my memory. I love remembering birthdays and running through my to-dos in my head. Take my memory and you take a big chunk of me. That’s not part of the deal.

All that, and I haven’t got started on heart problems, fluid retention, sun sensitivity, allergic reactions, blood clots, infertility or nail changes (or the side effects of Zoladex, the drug already in my system).

The truth is, by putting it out here in post form I wish to now close the A-Z of scary chemo effects. I will smile as the red liquid approaches. I will smile at my chemo nurses. I will smile as I write my first post-chemo blog. I will keep smiling until one of these things makes me smile no more.

As of this moment, I plan to take control of chemo. In an attempt to go down smiling (or better, not go down at all), I am in the market for chemo tips (I will write a post compiling them all later this week). Thanks to some beautiful friends, I have sleep caps, an inflatable bath pillow, nail varnish and queasy drops ticked off the list. I have senna. I have a toweling robe with which to dry myself and am on a mission to find the tastiest ginger nut. If you have a tip you think may help me stay strong and positive, please get in touch. I am willing to try, experiment and do anything (within reason), if I end up with a big smile on my face.

I was going to call this blog post ‘Know your enemy’, but when I finished writing it, I realised it’s wrong to call chemo the enemy. Cancer is the enemy and chemo is one of good guys (even if it likes to knock you down a few times along the way).

Here’s my deal. I’ll give you my hair, but you’ll have to fight me for everything else.