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

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 33: Smile even harder when things don’t go according to plan

It’s Sunday morning. Most weeks, I would be enjoying a leisurely lie-in and a lovingly-prepared cup of tea while putting the world – and the week – to rights. On this morning, however, I have had to go to hospital to make sure I don’t have dangerous levels of hormones running through my body. Thanks cancer, first you take my boob and now you’re going after my lie-ins!

It was supposed to be a blood test. And, it certainly started like a normal blood test. Left arm tick. Needle tick. Rubber band to bring up veins tick. Lovely smiley lady in scrubs who called me ‘darling’, tick. Only thing missing? The actual veins.

With right arm (otherwise known as obedient blood giving arm) now permanently out of action due to risk of lymphoedema, left arm is left in charge. Trouble is, left arm doesn’t like to play by the rules… Ever!

So, here’s what happened on my Sunday morning (before my morning cup of tea).

1) Smiley lady preps left arm and starts tapping. Nothing.
2) Smiley lady tries in three places to draw blood from my elusive veins. Nothing.
3) Smiley lady asks whether she can try my leg. I say: ‘go in anywhere. I have a high pain threshold’.
4) I, dutifully, start taking my jeans off. Smiley lady points out that by leg, she meant ankle, so no undressing required. Oops!
5) Smiley lady heads to my ankle. All I can think of is the fact I should have shaved more closely as it looks a bit hairy.
6) Ankle does not play ball.
7) Smiley lady looks less smiley as she asks me to sit outside and drink six cups of water and rub my hands together.
8) I head to the watercooler, realising that I didn’t do my jeans up properly after the aborted undressing attempt. Quick adjustment required.
9) I drink eight cups of water for good measure and look like I am rubbing my hands together in front of a fire. To others in the waiting room, I look like I have ants in my pants. I look weird. I am now the weirdo in the waiting room.
10) I need the loo. I cross my legs.
11) I go to the loo. Oops!
12) Smiley lady, rejuvenated by my epic water drinking, tries again. Four times. Nothing.
13) Smiley lady not smiley any more. I just feel bad that I haven’t been the perfect patient. My smiling looks a bit misplaced. My mind goes straight to the chemo nurses, the blood tests and the cannulas all waiting for me in the next round.
14) No more needles. Just another appointment tomorrow first thing with the anaesthetist. I have been upgraded from weirdo in the waiting room to annoying Monday morning patient with an arm that doesn’t play ball. Lucky anaesthetist!
15) I leave hospital with instructions to keep injecting (while still wondering about my hormone levels). And, guess what? It’s two injections for me today, not one. First Menopur, now Cetrotide wants in on the action!

By the way, if you’re wondering where everyone is on a Sunday morning in London, I’ve found them. They’re in the Assisted Conception Unit, watching me be a weirdo.

So, thank you cancer. You took my lie-in, you took my boob and, because you decided to spread out into my lymph nodes too, you took my right arm (for blood taking purposes).

My left arm looks like a dot to dot. My bladder feels like it has been abused (the body corset isn’t helping) and I really need a cup of tea. But, you know what? Even though I had the burning desire to start wailing in the waiting room, I didn’t. Every time you knock me, I’m going to dust myself off and come back fighting. Just let me have the tea first!

Breast cancer lesson number 29: If someone gives you the chance to freeze some embryos, grab it with both hands

Being a mother has always been part of the life plan (although so too was being married at 28, so I’ll admit it is a pretty rubbish plan)­. Surely you don’t give someone a passion for cooking, baking (and eating), knitting, sewing and playing and then take away the person (or people) most likely to benefit from it all ­– and love you unconditionally even though you have a tendency to throw icing sugar round the kitchen.

The trouble with life, however, is that things very rarely go to plan. In fact, I would go so far as to say that the more I plan (outside of a work context), the more life likes to throw me off course. For a person who finds comfort in to-do list making, itinerary planning and copious note taking, sometimes I just wish life would see it my way and stick to the schedule! We would both be better off.

If you’d told me last Christmas that I might be infertile by the time I pull my next festive cracker, I probably wouldn’t have believed you. In fact, it was only yesterday, when I was sitting on the train with a cold bag of fertility drugs (free cold bag on the NHS can’t be bad) that I started thinking about the possibility of life without a bump (this time a giant one that I would actively want to feel).

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To be honest, on most visits, I feel a bit of a fraud in the assisted conception unit, sitting next to couples who have tried so hard to conceive naturally. For some people, this is their world. For me, it’s something we’re squeezing in between having a boob taken off and chemo. When you’re on the rollercoaster all you can think about is hanging on (and not falling off). It’s only when you’re standing on solid ground again does the reality of what you’ve just experienced set in. Cancer is certainly a pretty unforgiving rollercoaster (certainly wouldn’t pass health and safety) – and I can guarantee you won’t see people queuing up for a piece of the action.

Yesterday, however, I didn’t feel like a fraud. Life has already had one go at my femininity and I would never forgive myself if chemotherapy stopped my ovaries from functioning before I’d had chance to give them a good workout. Sat in the waiting room (a rather plush waiting room with bespoke artworks and a plasma screen playing to itself in the corner) armed with my cold bag, I was just another woman trying her hardest to cling on to the hope of starting a family.

Of course, unlike a lot of women in the waiting room, my body is currently a textbook baby-making machine (so much so that I have to have lots of blood tests as I am in danger of hyper-stimulation). I am happy to report, however, that even with the world’s most pathetic period, I have started my course of Menopur and am one step closer to my next general anaesthetic. It’s Menopur at a certain dosage until a Sunday morning blood test, then I add in Cetrotide (and Ovitrelle gets a look in at some point). Meanwhile, I am also pumping my body with the anti-cancer drug Letrozole in an attempt to keep my oestrogen levels safe. So far, the scrap inside my body is a silent one – and long may that continue.

For those of you considering IVF or thinking about fertility preservation, please don’t worry about the injections. I was delighted to see the teeny weeny needle pop out of the packet and, once the nurse had walked me through the drug mixing and skin squeezing drill, I was all set. As long as you alternate injection sites, follow the pack instructions, tap the syringe to get rid of the air and don’t inject through tights, you’ll be fine (she says, I actually start injecting it myself tonight).

Should I come through chemotherapy with my fertility in tact (apparently a group called the ‘alkylating agents’ are the drugs commonly linked with infertility), the next fertility-related hurdle is Tamoxifen. This hormone treatment (which women tend to take for a minimum of five years) is used in oestrogen receptor positive cancers. You are advised not to get pregnant while taking the drug, even though it can actually make you more fertile. If there’s no sign of the menopause when I complete the course, then there might just be a window of opportunity still ajar that we can squeeze through.

Beyond setting injection reminders (my Menopur injections need to be taken in the evening) and taking my anti-cancer drugs, this is one plan I don’t control. And, you know what, that’s fine by me. I think now is the time to stop writing lists and start making things happen. After all, I need to store up all my planning energy to organise a wedding – something for which a list and a spreadsheet or two would be hugely beneficial. Life surely wouldn’t disagree with that!

Breast cancer lesson number 26: Make every day a milestone day

Today is a milestone day. Ok, so it’s not exactly on a par with diagnosis day or pathology results day (just a few of the compulsory days Breast Cancer likes to throw in to keep us entertained). But, that doesn’t make it any less meaningful. No, today is the day I come off Provera (my progesterone hormone). That means, in a few days time (if my body plays ball), the fertility side of my treatment will begin. Self injecting here I come!

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Moments in time don’t have to be monumental to make it as milestones. When you are strapped into a body corset, even getting to the end of the road can feel like a huge achievement! So here is a glimpse into my world of the major – and not so major milestones – that have made a mark in my diary these last few months. I hope this will help those facing the cancer challenge in the future to understand a bit more about timeframes and what to expect.

1) 24 December: Lump discovery day
Arguably the most important day (and most valuable shower) of my life. I took the discovery seriously, but am glad to report, it didn’t put me off the Christmas ham.

2) 25 December: Proposal day
Ok, so not fundamental to the story, but it’s a lot easier talking about losing a boob and making embryos when you have a man by your side (and a ring on your finger). I am a lucky lady.

3) 27 December: GP referral day
Not the most reassuring of visits I’ll admit, but the doctor acted really fast and referred me straight away. I know a lot of young women are told to come back at another point in their cycle to see whether the lump has changed size, but thankfully, due to it being Christmas, I got my referral. Just another reason to love Christmas!

4) 9 January: Hospital appointment day
Was planned in as the morning before, but due to work commitments, I moved it to the Thursday morning. I know how stupid that sounds, but I really didn’t believe it was anything other than a breast mouse. Let’s just say, I have learned my lesson (and missed a fabulous annual client lunch that day as punishment). What started as a quick ‘feel’ turned into an ultrasound, a few biopsies and a rather awkward conversation with two consultants (they didn’t say cancer, but they did ask about my family history A LOT).

5) 17 January: Diagnosis day
Not a day I’ll forget…ever! Crying, mammogram, more crying, truck load of leaflets and, you guessed it, more crying.

6) 18 January: The day that taught me the value of friendship
Afternoon tea at the Modern Pantry was made all the more sweet with a close friend at my side. Having hidden away for months, this day encouraged me to get out my phone and start planning (trips to Sketch, nights with Darius, relaxing walks and home visits). I love my friends and the colour they bring to my days.

7) 23 January: MRI day
Four needles, one arm full of contrast dye and a noisy test to determine whether or not I could have a lumpectomy.

8) 25 January: Feeling human day
I had a facial. No one mentioned cancer. I walked into a shop (ok, so I was buying track suit bottoms and zip up tops) and someone told me I looked and smelled great. I smiled. It felt good.

9) 27 January: Diagnosis day (part two)
More cancer, another biopsy, a trip on a secret staff bus, a plastic surgeon meeting, pre-op testing and a lot of tummy squeezing. The mastectomy is on, the tummy is borderline.

10) 31 January: Fat testing day
One CT scan and one feel-like-you-are-wetting-yourself moment to check whether I had a good blood vessel in my tummy to transfer to my boobie.

11) 1 February: The day I decided to start this blog
A major mental milestone, this blog helps me stay positive, while keeping my loved ones informed and helping others diagnosed with the big C!

12) 4 February: Carbo-loading day
Ok, so with the volume of chocolate coming through the letterbox on a daily basis, this was more like a two-week period. But, on this day, at a work away session, I ate a lot. I believe this was a major step forward for tummy and will always think about it when rubbing aqueous cream into new boobie.

13) 10 February: Decision day
Tummy confirmed as new boobie. Did a little dance (away from the surgeons of course)!

14) 14 February: Provera day one
The countdown to freezing embryos begins. Won’t mention what happened to Duncan that day. More of a fertility milestone for him than me. And on Valentine’s Day!

15) 15 February: Last supper with D day
Sounds a bit dramatic, but it was actually a beautiful meal at the Cutty Sark pub that reminded me of the importance of taking time out to savour special moments with loved ones.

16) 19 February: Pre-assessment and mobile off day
Memorable not because I found out about leeches, physio moves and arm measuring, but because I turned my work emails off on my Blackberry for the first time in a long time. The red button now only flashes to alert me of good wishes.

17) 20 February: the day I tried my first ever Nandos
Ok, don’t judge me. Not quite the last supper I had imagined. Couldn’t resist. First time ever – and with my parents.

18) 21 February: Surgery day
Wasn’t around much, but hear it went well. Got a new boobie. Got rid of cancer. Not a bad day.

19) 22 February: The day I survived
Owwwwwwwwwww! It hurt, but I got through it, and that is all that matters.

20) 23 February: The day I got up
Getting out of bed is only a big event if you thought you’d never get out again the day before.

21) 24 February: The day the drains started coming out
They don’t hurt if you breathe in and out three times and follow the nurse’s instructions. Go to your happy place and you’ll be fine.

22) 25 February: Big reveal day
I don’t think I’ll ever forget the mirrors or the tears. I did manage to wash myself and pull my big knickers up though, so it wasn’t all bad. I also got rid of that moving mattress (certainly something worth celebrating).

23) 26 February: The day I got released
Hospital day 5 means home time. Felt good sinking down into our old mattress and getting settled with my home comforts.

24) 1 March: The day I did nothing
Having overworked my arm the day before, today was a day of reading and film watching. Never underestimate the restorative power of nothing. I have been too busy in life to notice.

25) 3 March: The day I finished my first post-surgery book
I love books, but could never get into them after my hip surgery. I take this as a good sign my brain is starting to fire again.

26) 5 March: The day I dressed myself
Wouldn’t have made this a milestone a few weeks ago. It’s amazing how much excitement can be gained from putting your socks on. I also passed wound care today, so one step forward.

27) 6 March: The day I walked in the park
Ok, so we had to drive there, but Greenwich Park had never looked so inviting with the early signs of spring. I even got to see the deer and admire the view.

28) 7 March: Pathology results day
The first day of the rest of my life. A big meeting that reinforced the importance of seeking out milestones and making a difference every day. Friday was also the day my wonderful nurse of a mum went back home to leave Duncan and I to fend for ourselves. I am happy to report that we are doing pretty well. Duncan is spending most of his time trying to stop me lifting things (I have resorted to painting my nails in the hope that the frustration of chipping the paint will stop me in my tracks) and we did have a rather interesting discussion about the merits of a scrubbing brush when doing the washing up (he is going to buy one this weekend).

29) 8 March: Duncan does the washing up day (and gets a quick look)
A monumental life event. Ok, so he struggled with the pan, but he did great (even without a scrubbing brush). His reaction to the ‘new’ me was thoughtful and kind. He even towel-dried my back when I couldn’t reach. I also got to remove the sticky mesh on my tummy and the final steri-strips on my boob, so am starting to look less like an accident victim.

30) 9 March: Bye bye Provera day
The window to help preserve my fertility is starting to open. Have also just had a lovely lunch outside for the first time this year.

They may not be big, but for me, each one of these milestones has made 2014 one of the busiest and most emotional yet – and it’s still only March. Each date has made such a lasting impression, I didn’t even need to consult a diary to write this post.

There will be many more cancer milestones (and more tenuous ones) to come (from chemo day one to radiotherapy planning day and the day I get my first tattoo) and I intend to embrace and smile in the face of each one. After all, a life without milestones, however small, is not really a life at all.

So, raise a glass to milestones. May you all have many happy ones this year.

 

Breast cancer lesson number seventeen: The body is an amazing – and unpredictable – thing

One week on from chop-me-up-and-get-the-cancer-out day and I am delighted to report that (touching all wood around me), I seem to be free from any early complications.

On the tummy side, I’m still pretty sore, coughing is savage and laughing just cruel, but my magic corset is helping me get around. On the boobie side, there’s still numbness, some hard tissue (that’s not had enough blood) and swelling (wouldn’t mind if that stayed actually) and it’s a nice shade of yellow, but it’s alive and that’s all that matters. And on the arm side, with the exception of some nasty pins and needles in my hand and swelling under the armpit (that means I can’t use it properly), it’s coming back to life. Healing takes a long time, but for week one, I’m feeling good.

There is one tale of the unexpected, however, that I have not yet shared – and it was enough to contribute to my recent broken sleep (if you’ve read lesson four, you’ll understand the significance of this). After working hard to ‘switch everything off’ for surgery so that I could start fertility treatment in a few weeks time, imagine my surprise (and that of the nurses) when, on day one, I ‘came on’.

I realise this subject is enough to turn most male stomachs, but this wasn’t any ordinary monthly cycle or episode of PMT. It was the cycle I wasn’t supposed to have, so I could give myself a window to preserve my fertility and freeze some embryos before chemo. Its arrival brought with it two fears: 1) I had lost that window and would have to start chemo with the realisation it may take away my fertility for good or 2) I would have to start self-injecting with hormones now and taking anti-cancer drugs to try a give myself the time to stimulate those ovaries. Sadly, when the nurses called the fertility clinic to explain my dilemma, it became clear option two just wouldn’t be possible so soon major surgery.

The good news – and the reason I have held off sharing this until now – is that the cycle disappeared nearly as quickly as it arrived. When the body is subjected to trauma it starts doing funny things. This was just its way of being funny. Thanks body, not funny! On Wednesday, I was given the green light to keep taking the pills, so that fertility treatment can start once the scars have started to heal properly. So, we’re back on track.

There was, however, a bit of amusement attached to this mini drama (again sorry male friends, this could be considered over-sharing). When I made the discovery, I needed pads fast. It was at this point that I was presented with NHS equivalents (imagine full on adult nappy or pad the length of an oven glove). It may not have been shocking enough to stop my period in its tracks, but it certainly prompted me to ask my two unsuspecting male visitors (sorry guys) to sort me out – and fast!

So, if your body starts playing up and having a bit of fun, do not despair. It’s just its way of saying: ‘Hang on a second, did I consent to this rather brutal attack? I have feelings too.’ Let’s just hope it plays ball when I come of the pills at the end of next week, otherwise there’ll be strong words! 

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

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!