Category: Chemotherapy

Breast cancer lesson number 37: Be a kind stranger. You never know when you’ll need one

On By Jackie ScullyIn Breast reconstruction surgery, Chemotherapy, Happiness, Kindness4 Comments

If you’ve ever been at the receiving end of a random act of kindness, you’ll know that a little bit of thoughtfulness can go a very long way. Kindness is the gift it costs nothing to give and the mark it leaves often lasts a lifetime.

I’m amazed and humbled when I think of all the wonderful acts of kindness that have been gifted to me over the years. For example, I will never forget the lady in the bed opposite me when I was recovering from hip surgery. In the absence of a bed on orthopedics, I was sent to the oncology ward (maybe I should have just stayed there and had my boob off at the same time), surrounded by some people with just days to live. Unable to move properly, for fear of triggering the nerve pain in my hip, it was difficult to perform even the simplest of tasks. I remember struggling to reach my water one night, only to find the lady opposite (an elderly, frail and very sick lady) had got out of bed just to fill my glass. It may not sound like a grand gesture. But, to me, the stranger in the bed opposite, it meant everything. I was wheeled out of that hospital just a few days later. She never left the hospital again.

Roll the clock forward six years and I am still touched by the kindness of strangers. Whether it be the thoughtful Waitrose delivery man (who would restock my fridge if I let him), the nurse in recovery who extended his working hours just to make sure I was comfortable or the catering lady who slipped my mum a free lunch, it’s random acts such as these that really underline what beauty there is in the world.

Only last week was I reduced to tears by the kindness shown to me by a company called Bold Beanies (they make fantastic sleep hats and beanies to help with hair loss). I ordered one navy and one pink beanie and requested the words: ‘small boobs, big smiles’ be printed on each one. A few days later I received an email from the lovely Emilienne saying the designer had thought my slogan was so good he wanted to turn it into a logo! I was so thrilled with the results, and touched by the gesture. Certainly something to smile about when the hair starts to fall out!

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Of course, in each of the examples above, these wonderfully kind people probably guessed (or knew from the tubes and the morphine in the hospital) that I was fighting. Trouble is, it’s not always easy to know who might benefit from a smile and a thoughtful gesture. But, chances are, we’re all battling in some way.

Travelling to the assisted conception unit yesterday, I was reminded of the train journey I took to get my pathology results. Mum and I were sat facing an anxious looking couple who seemed miles away from the train carriage in which we were all sitting. I didn’t imagine I’d ever see them again and get to the bottom of their anxiety. Imagine my surprise, when I found myself sitting opposite them once more – this time in the breast clinic waiting room. You just never know. Everyone is fighting. Everyone is hurting.

To the untrained eye, when I’m travelling to hospital now, I’m just a fairly ordinary young person probably on her way to meet a friend and have a nice brunch in town. Look at my breast cancer pin, the fact I move awkwardly when I sit down and the fact I am guarding my right side and you might find the picture changes. At the moment, my illness is pretty much invisible. But, that doesn’t make it any less real or frightening.

We’re all familiar with the concept of giving back, but this is my little plea to ‘pass it forward’ too. If someone is kind to you, find a way to pass that kindness on – or better still, be the one to start a chain of kindness. It could be as simple as opening the door with a smile, offering your next delivery man a biscuit or giving up your seat on the train (I acknowledge that smiling on trains in London may get you arrested). Random acts of kindness can turn a grey day into a day to be remembered.

So, join me today. I want to be a kind stranger and make the world just that little bit brighter… one random act at a time.

 

How to make a drain bag
If you’d like some inspiration, my wonderful friend Fran, has typed out the instructions for making a drain bag. If you’re keen to dust off your sewing machine and join me in making a few, I promise to deliver them to the hospital. With just a few sheets of material (instructions below), you could make the life of someone newly diagnosed with cancer, just that little bit better. Please email me at Jackie_scully@hotmail.com, if you’re planning to pick up some thread!

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Instructions below make 40 (length) x 30 cm (width) drain bag with adjustable strap

NB: I use buttons for the adjustable strap but you could use any kind of attachment e.g. a buckle.

You will need:
½ metre pretty material
½ metre lining material
2 x big buttons
Matching thread

1) Cut out both materials 45 (length) x 66 cm (width), making sure you cut the edges off first (where the material is thicker and you see little pinpricks). Also, cut two lengths of the pretty material for the strap, both 10 cm wide (1/2 metre length).
2) Pin the pretty and lining materials right sides together. Pins should sit at 90 degrees to the sewing line. Sew both sides and bottom edge as one line of sewing 4/8 from the edge of the main bag material. Cut the corners a couple mm from the sewing line.
3) Pin the two strap pieces together along one 10cm edge – right sides together. Sew.
4) Turn the main bag material the right way round and iron (into the hem).
5) Iron the strap seam so it sits open.
6) Fold the main bag material inwards for the top seam (pretty material slightly higher than lining material). Iron and pin. Sew as close to the edge as possible.
7) Fold and pin bag in half with the pretty material on the inside. Sew bottom and side seams.
8) Turn bag right way round and iron.
9) Fold the strip of strap material in half (right sides together). Pin and sew. Turn back the right way round.
10) Fold the end edges of the strap in to form seams and iron. Sew as close to the edges as possible.
11) Pin one end of the strap to the inside of the bag. Use a strong zig zag stitch to sew a square around the edge of the strap to attach it to the bag.
12) For the other end of the strap, you need 4 button holes roughly 10 cm apart (depending on the size of your buttons).
13) Sew the two buttons 10cm apart on the main bag.
14) Done!

Happy sewing!

Breast cancer lesson number 34: Take one day at a time

On By Jackie ScullyIn Chemotherapy, Fertility7 Comments

Hermione Granger (of Harry Potter fame) has something every single cancer patient needs. By this, I don’t mean books (although you get given quite a few), a wand (wouldn’t say no, though) or intellect (although it does come in handy when tackling those cancer terms). By this, I mean a time turner. Basically, if you ever need to be in two places at any time, you can.

In the absence of said magical device, this morning was a little bit challenging. My task, on the face of it, was simple. Visit the Assisted Conception Unit at 9am for a blood test with an anaesthetist and then head over to oncology for a 9.45am with a cancer doctor. You can usually get quite a lot done in 45 minutes. Not so in hospital. Blink and you can miss a whole day in cancer land.

Armed with a cup of tea (second of the day as first was one designed to warm the veins), five layers and a scarf, I was toasty and ready for my blood test at 8.50am. Little did I know, it would be 11.20am when they actually managed to squeeze me in to take it (by which time I had changed departments, undressed for the oncologist, redressed, and pretty much lost the benefit of all the tea drinking). The good news? He got the blood. The bad news? It wasn’t easy. The good news? At least I can handle the pain even with bad veins. The bad news? Even with a high pain threshold, it still wasn’t very nice.

Why is it that time always seems to disappear quickly when you need it the most? Running between departments certainly doesn’t do much for the stress levels, so first lesson of the day is: one day, one appointment. Any more and you quickly develop an unhealthy obsession with clocks (which all conveniently like to tell different times). In fact, I think my Blackberry likes to tease me by moving forward a minute a day just to play with my mind.

Albeit in the wrong order, I did get to both appointments and, am now, one step closer to the end of my treatment. Abraham Lincoln once said: ‘the best thing about the future is that it comes one day at a time.’ All I can say is, thank goodness for that. Today, I got one long look into the future. Eighteen weeks of chemotherapy followed by five weeks of radiotherapy. My reward for passing this endurance challenge? Five years of anti-oestrogen drug Tamoxifen. If that future came all at once in a giant high-dose injection, I think my body would probably start walking… with my mind not far behind. Put it this way, left arm certainly wouldn’t produce a vein for that one.

Having had a whistle-stop tour through the world of cancer drugs and its wonderful list of side effects (starting with: ‘you will lose your hair’), it didn’t take long for the subject of time to rear its head once more. Because the cancer they extracted so neatly from my body was high stage and aggressive, they want to get going… as soon as possible. For someone still strapped into a body corset for the next three weeks and still currently injecting herself with fertility drugs in any part of her body that doesn’t feel tender (there aren’t many of those left), the prospect of swapping one set of drugs for another lot (while also still trying to laugh and cough without my tummy hurting) is not particularly inviting. Guys, this is really hard – and don’t let anyone tell you any different.

It looks like my next two weeks will be a delicate juggling act of blood tests (both fertility and cancer), appointments (scans, tests and assessments), a quick anaesthetic to collect some eggs and possibly the insertion of a PICC line. Fertility and cancer are fighting for my attention and they both need time. Trouble is, by the looks of both schedules (and the current uncertainty surrounding egg harvesting day) neither really wants to wait in line. Far from avoiding two appointments in one day, I’ll be hard pushed to avoid two at the same time. If life can’t magic up a time turner (or just a few extra hours in each day), I will just have to get used to the fact that the day I wake up expecting might not be the day I end up experiencing. 

The future does looks brighter with a game plan, and I just have to accept that, for the foreseeable future, my time is not my own. All I can do is take one day at a time. If I can get through this unscathed, I will give myself the best chance of survival. Then, I might just have time on my hands – or on my side – once more. 

Breast cancer lesson number 28: Don’t forget your toothbrush… or the dentist

On By Jackie ScullyIn Chemotherapy1 Comment

There’s one thing I fear more than giant needles, mean cancer-fighting drugs and surgeons with sharp scalpels ­– and that’s the dentist. Don’t ask me why. I have never had invasive procedures, don’t have a clue what real toothache feels like and I have been blessed with lovely dentists (my childhood dentist even had a photo of the town on his ceiling to keep us patients entertained). I know it’s irrational. I know it sounds truly bonkers when I seem to be smiling in the face of everything else. But, there is something about the prospect of sitting in a dentist’s chair that makes me feel a little bit sick! Maybe it’s the fact that when someone has their hand in your mouth, no one can hear you scream.

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I have to admit, however, that following today’s early-morning appointment, I may have to reconsider my view of the dentist. I still hate the chair (more so today because I had to raise my knees to stop it pulling on my tummy ) and the fact every time I go to swallow I fear the dentist’s tools will end up in my cheek! But, I have now discovered a word that makes dentists roll up their sleeves and forget the flossing lecture. The word? CHEMO!

I felt sorry for my dentist this morning. No one wants an 8.30am patient with more problems than can fit on a medical history form (they should make the boxes just a little bit bigger though. Am not sure having room just to put the words ‘breast cancer’ is enough). A few minutes racing through new boobs, fertility, chemo and radio and my check-up turned from a quick blast of dentist speak: ‘one, two, upper part erupted etc’ into a 20-minute ‘let’s-fill-and-seal-what-we-can-to-stop-the-chemo-getting-your-teeth’ session. I reckon my teeth are now so well reinforced, I could make a stick of rock feel like a stick of celery.

I would never have summoned up the courage to go to the dentist two weeks after the introduction of new boobie, had it not already been penned in the diary (I don’t like crossing things out). But, having had such a pleasant and supportive experience, I’m already booked in to go back in June (with the hygienist in a few weeks time).

Humbled again by the kindness of strangers, it’s amazing just how many people there are willing you on and arming you with the tools to stay strong.

Read booklets about chemo (which my breast care nurse did warn me is like reading the list of side effects in a packet of paracetamol) and they talk about the possibility of getting a sore mouth, dry mouth, ulcers, tooth decay, infection, bleeding gums, oral thrush and taste changes! Nice. They also advise people to use a soft toothbrush, brush after every meal, use an alcohol-free mouthwash (which Listerine in photo isn’t by the way), avoid spicy and acidic food (if mouth sore), take regular sips of water and chew sugar-free gum.

Hopefully, with a combination of toothpaste treats and dental checks, I’ll get through this next phase with happy – if not pearly white – teeth.

So, today is the day I say goodbye to ‘the fear’ and hello to mouthwash! My teeth are ready for battle – now I just need to work out what else needs a bit of reinforcement!

Breast cancer lesson number six: If Dr Google really had the answers, we’d all be camping out at A&E on a regular basis

On By Jackie ScullyIn Breast reconstruction surgery, Chemotherapy, Diagnosis and treatment planning, Reflections on cancerLeave a comment

Dr Google should be struck off! Far from reassuring us with his wit and his wisdom, one session on the computer is enough to make us run a mile – preferably in the direction of a general anaesthetic! (Please note, I have nothing against Google the colourful brand and the usefulness of its search functionality, just the medical company it keeps.)

In the fight against cancer, however, it doesn’t take long to learn that knowledge is power. And I’m a big fan of power. I walked into the hospital on diagnosis day thinking about my latest publishing deadlines and whether or not I had enough chorizo left to make a risotto for dinner. I came out armed with a small forest worth of paperwork and the determination to read and understand every word.

As far as I am concerned, cancer is just another client – albeit a rather impatient and demanding one that doesn’t seem to like my scheduling! It has its very own notebook, to-do list and meetings calendar. It also has its own agenda – which currently doesn’t quite match mine!

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So, having discharged myself from Dr Google’s rather unsteady hands, I took it upon myself to plough through more than 400 pages on the subject in just one day (it was a particularly fun day!) I am at last learning the language of breast cancer – and fertility for that matter. From lobules to lymph nodes and stages to systemic treatments, my brain is now a giant glossary of specialist terms that sound like they belong in a science fiction movie. I am also comfortable talking openly about boobs (hence the name of this blog), which has been a little alarming for the men in my life. 

Knowing that you feel well, but also knowing that there is something inside you trying to take your life away, is a hard thing to process. For the first few days after my diagnosis, I found it so hard to sleep. As irrational as it may sound, I thought that if I shut my eyes and let my body take charge, the cancer would take me. That’s why I quickly realised, it is so important to stick to what you know and what makes you feel like you are in control. For me, that’s hard work – and lots of it.

If you’re as interested as me about the little battle going on inside my angry right breast, here are the facts (as I currently know them). I must add here that two weeks does not a cancer surgeon make. I have a degree in English, not medicine, and this is my take on the information provided to me.

The Scully guide to Stage 2, invasive lobular carcinoma

1)   It wants to make friends: invasive (rather than ‘in situ’ or non-invasive cancer) means it has the ability to spread. It has already teamed up with the lymph nodes under my arm, so they’ve all got to come out on surgery day. I can assure you this is one invasion that won’t make the history books.

2)   It all started in the dairy: the lobular bit in the name means that cells started to divide and grow abnormally in my milk-producing glands or lobules (rather than my ducts – tubes that carry milk to the nipple). 

3)   It knows the score: whether you like it or not, your cancer gets a grade (and trust me, this is not the time to be top of the class!). The scoring system used grades the cancer (from 1 to 4) by looking at the size of the tumour, whether the lymph nodes are affected and whether there is any spread to other body parts. I have a tumour that is around 40mm (there are two other suspicious areas and I get the biopsy results tomorrow) and there is evidence of cancer in my lymph nodes. That puts me at stage 2. I’ll take that thanks.

4)   Oestrogen is keeping the cancer well fed: this is actually one of the hardest parts of the diagnosis to take in many ways. It feels like my own femininity is leading the charge. The only good thing is that there are more hormone drugs available to join my side of the battle.

There will always be more to learn but, for now, I think I know my enemy. Cancer, it’s time for you to be afraid, not me! 

Breast cancer lesson number five: If it’s all coming off, it’s time to start experimenting

On By Jackie ScullyIn Chemotherapy6 Comments

Today was supposed to be a good hair day. Having booked a colour appointment for the first time in about seven years, I had planned to return to my blonder days (I confess to being one of those people who still writes ‘blonde’ to describe myself, when I am as mousy as they come) and discuss bridal hair styles.

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Let’s just say today didn’t quite go according to that plan! For those who know me well, I know what I like and I like what I know. I’m the girl who orders chicken tikka masala, special fried rice and a garlic naan because I fear the disappointment of trying something new. That includes my bob, which has been a friend to me these last six years.

Imagine my hairdresser’s surprise (lovely Jon, who is the amazing manager of Sean Hanna in Canary Wharf and has been cutting my hair for years), when I sat down this afternoon. He said: ‘same as usual?’ I said: ‘Not this time’.

Ok, so I haven’t gone pixie (that’s for the post-surgery, pre-chemo days in about six weeks time, so watch this space). What I have done is try a Michelle Williams look (as recommended by my lovely colleague Rachel) with the wind on my neck and my ears on show. For me, it’s bold. For those with short hair already, it’s not exactly radical. I appreciate I look nothing like Michelle Williams, but you get the picture. I think Duncan is going through an adjustment phase, but we both agree, it’s a good step towards the no-hair days!

Today wasn’t a good hair day. It was a great hair day. It was a day that taught me if you’ve got confidence and a smile, you have nothing to fear. Whatever the chemo days are going to throw at me, I’m ready.

You may take my hair (preferably starting with my leg hair), but you won’t take my spirit!

Breast cancer lesson number four: the time to have that awkward conversation is now!

On By Jackie ScullyIn Chemotherapy, Diagnosis and treatment planning, Fertility3 Comments

I love science. I still find it hard to understand exactly how planes stay in the air after take-off – and I have never really found a way of incorporating the periodic table into daily life – but, when it comes to the science of fertility, I am in awe.

The fertility question is an interesting one when you’ve been diagnosed with cancer. Talking about life after cancer, before you’ve even started the fight may seem strange. But, you know what, it wasn’t the possibility of dying that came into my mind when I first heard the news (the doctors have got that bit covered). It was the thought that the choice to have children may be taken away from us – before we even walk down the aisle. Having babies is all about the next chapter – after this rather unfortunate obstacle is but a distant memory. What is life about if it isn’t about hoping and dreaming – and making sure that next chapter is a chapter worth fighting for!

My advice to all women in the future who find themselves in this unenviable position is, just ask. After all, if you don’t ask… The last thing you want is to be sitting with a cannula in your arm being fed chemo drugs and knowing that those drugs might just be the ones to take your fertility away (and there’s no back-up plan). Having started my periods at the age of 10 (my primary school friends will remember me missing swimming lessons every two weeks for six months, which I put down to a strange-but-frequent illness), it would be a cruel twist of fate to have the hot flushes start at 32!

I promised my family that I wouldn’t do anything that would delay my treatment or risk my health. On surgery planning day (see lesson three), I explained (with a heavy heart) to the surgeon that I didn’t want to attend my assisted conception appointment if it meant that I would start out on a journey I wouldn’t be able to finish. At this point, the surgeon laughed and said: ‘Jackie, if you think we’re going to let you do anything that would risk your recovery, you’ve got another thing coming.’ That certainly told me who was boss!

The great news is, if you ask early on, and you are lucky enough to have time (I know this is unfortunately not an option for some women and other cancers), it can become just another part of your care pathway.

So, within days (thank you amazing NHS), I was sat next to anxious looking couples in the fertility clinic waiting to talk about freezing eggs and embryos (I’d already done plastic surgery and boob jobs in the same week, so why not?).

This is where the amazing science comes in. IVF involves exposing the body to high levels of oestrogen. The trouble is, my lovely lump quite likes oestrogen and is being fed by the stuff – the very thing my ovaries need. The solution? Pump my body with cancer drug Letrozole, which will try and protect the breast from the effects of oestrogen while stimulating the ovaries just enough to get those eggs going. In short, two weeks after surgery, two lots of drugs are going to have to have a scrap inside me! Let’s hope I don’t have to join in!

I came away from the fertility clinic truly humbled (and a little bit violated – but I won’t go there)! The biggest smile of my day, however, came from the pharmacist, who was confused as to why I was only being prescribed a small number of Letrozole pills. He was trying to be discreet in the waiting room and asked me to justify the prescription (as if I’m the doctor!). Having tried to skirt around the subject so as not to disturb other patients, I ended up saying: ‘Look, I’ve got cancer, I want babies, these drugs will let them pump me with hormones post surgery so I can try for babies, and then I can have chemo. Is that ok?’ I think I may have over-shared to both the pharmacist and the entire waiting room. After that, I think he would have prescribed anything just to stop me talking!

Of course, it takes two to make an embryo. What’s the last thing any man wants to hear a few weeks after proposing: ‘Um, would you donate some of your manhood towards the greater good?’ Just need to make sure he signs the consent forms now before the next appointment!

 

Breast cancer lesson number three: Good things do not always come in small packages!

On By Jackie ScullyIn Breast reconstruction surgery, Chemotherapy, Diagnosis and treatment planning, Reflections on cancer8 Comments

As a pint-sized person, I have always been an advocate of the little things in life – Cadbury’s Heroes being a particularly good example (why would you eat a full-sized chocolate bar again?!). My breasts were no exception – until now!

It pains me to say it, but small is not always beautiful. In fact, in breast cancer land, small is pretty annoying.

My world view was crushed on what I truly believe to be the weirdest and most surreal day of my entire life. Thankfully, I wasn’t alone this time – although I think my amazing mum (hello mum!) could have been forgiven for wanting to go and lie down in darkened room about half way through. Massive credit to her for laughing along with me throughout – even without lunch.

It was supposed to be one 10am meeting with a surgeon and a breast nurse to discuss the MRI results and plan what I thought would be a wide local excision or lumpectomy (in other words, chop it out, move on to chemo). I thought I’d be back at work within the hour.

Here’s what happened:

1)   Surgeon (who is hilariously funny and witty for a surgeon) explains that the tumour is more like 40mm than 28mm and there are two other suspicious areas that need investigating (just to qualify, this part was not funny or witty). Still smiling though!

2)   Surgeon examines me – and brings mum in too for a quick feel – and confirms that my breast is just too small to save (thanks nature). Bit scared and annoyed with nature!

3)   Surgeon explains the two ‘reconstruction’ routes, one of which involves taking out my tummy tissue to give me a new mound. Has a feel of my tummy and thinks they might just be able to use it. Laughing now at fact tummy is being squeezed!

4)   Surgeon refers for second biopsy to investigate findings and my kind breast care nurse loads me up with breast reconstruction literature. Still smiling… just!

5)   Care staff at biopsy number two turn out to be very entertaining and lovely. Smiling lots to block out fact my boob is yet again being explored – trying not to laugh otherwise might disturb procedure.

6)   Lovely breast care nurse points us in direction of secret staff bus to whizz us to another hospital. Mum and I laugh while trying to look like serious hospital staff.

7)   Meet nurse quickly and get weighed! Best weight in three years (yay for dry January and losing my Christmas podge). Feeling pretty smug!

8)   Meet next nurse who makes us tea and explains that the Dutch only put milk in their children’s tea. Smiling at having discovered something new!

9)   Meet plastic surgeon, three nurses and a doctor who explain tummy procedure and give me a quick squeeze. Check leg and bum and confirm just too tight (oh yes!). Feeling pretty smug again at weight loss.

10)  Plastic surgeon thinks tummy might have enough fat to go ahead with procedure, but needs to do a CT scan to check. Feeling less smug and starting to regret losing Christmas weight. Maybe need to make a batch of mince pies!

11)  Surgeon refers me to pre op assessment (why not, while I’m here)!

12)  Behind door number one, nurse one takes blood pressure. It’s high (I would say this wasn’t surprising)! Second time round, I pass and move on to MRSA testing. Smiling due to the fact I like passing tests!

13)  Behind door number two, nurse two (who told us a lovely story about buying herself a dressing gown for Christmas and wrapping it up under the tree because she’d always wanted one and never got one) talks me through op day. Smiling lots at having met a friendly lady who would have otherwise remained a stranger!

14)  Behind door number three, nurse three takes blood. Uneventful. Smiling at fact needle went in vein and was uneventful!

15)  Op date confirmed: 21 February. Phew! Bit tired of smiling now.

So three waiting rooms, two surgeons, 15 care staff, six appointment rooms and six and a half HOURS later, and my mum and I are hugging and laughing at the tube station as we say goodbye.

While neither the day nor the results were what I was expecting when I woke up that morning, I was a) humbled and inspired by the amazing hospital staff and the way they fast-tracked me and b) happy to have spent the day experiencing and laughing through it all with my mum. Every cloud…

Tune in on Monday to find out if I passed the ‘fat’ test…