Tag: cancer diagnosis

Breast cancer lesson 149: Ten things breast cancer has taught me that I never thought I’d ever need to know

On By Jackie ScullyIn Radiotherapy, Reflections on cancer2 Comments

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As I begin my last full week of active treatment (the end is now just a week away), I have started to reflect on the last nine months and the impact this unbelievable chapter has had on my life.

I think it is fair to say I have discovered an awful lot about myself and life in general as my body has been systematically destroyed and put back together again. I will be sharing these life lessons here over the coming months, but I thought I’d start by looking back on the things I never thought I’d ever need to know!

It’s amazing how we can move through life completely unaware of the intricacies of a certain topic or illness. Then, something changes, and we are required to become an instant expert. Back in lesson number 32 I remember describing the language of breast cancer as something not dissimilar to school. With talk of grades, stages and examinations, all I was missing was a satchel and a uniform (unless a backless gown counts)!

Beyond the booklets and the cancer glossaries, however, there are other learnings for which no amount of reading can prepare you. It’s true that I never thought I’d need to know these things, but, in a funny sort of way, I’m rather glad I do. It makes me cherish the bits of my body I still have that little bit more – and reminds me just how wonderful the human body really is.

Here’s my top ten (trust me, there are many many more). Consider this my alternative breast cancer guide!

1) Tummy fat is pretty intelligent: Top of the list has to be the fact that your tummy fat, wherever it is positioned on your body, never forgets its origins. Hard to believe unless you see it in action! I have been losing weight since the end of chemo so I am evening up a bit now! I must confess, tummy fat is a lot better looking up top.

2) Arranging an appointment to see the Orthotist is like signing up for a spy mission: I will never forget the day I got a voice message from the patient appliances department that was so cryptic (along the lines of ‘Miss Scully, we think you know why we’re calling, so please get in touch to book in a time’, I had no idea what appointment I needed to call to arrange. Starting the call with: ‘I think you want to see me, but am not entirely sure why’ is not something you do every day. I should also add, I had never before heard of an Orthotist. Such mystery all to fit me with a wig!

3) Cancer gives you tattoos: I didn’t think a serious illness would make me a rebel. Now the proud owner of three tattoos for radiotherapy alignment purposes, I am no stranger to a bit of inking. Now all I have to do is wait for my final tattoo when I get my nipple back!

4) Losing your hair downstairs makes peeing in a straight line pretty tricky: if you’ve asked me a year ago whether I would feel comfortable discussing weeing tactics at all, let alone publically, I would have laughed out loud. Now, pretty much anything goes. Try it ladies and you just tell me if don’t agree!

5) Being bald can be brilliant: getting acquainted with my bald head is one of the most liberating things I have ever experienced. While I would never wish to watch the clumps fall into the sink again, I am now pretty comfortable with my head shape and am still loving the ease with which I can get ready for the day. Silky smooth legs are also a bonus! Just wish the nose hair would return quickly.

6) Leeches may be used in breast reconstruction surgery: thankfully, these little beasties didn’t make an appearance in my cancer story, but I was slightly shocked to hear they might. Apparently they can help encourage blood flow if the new boob starts to struggle. This was a bit of oversharing on the part of the nurse prepping me gift surgery!

7) Tea can taste bad: I thought I would never see the day I would decline a cup of tea. Lose your tastebuds, however, and it’s one of the first things to go. I guess I also thought I couldn’t love tea more than I did. Getting my tastebuds back, however, has given me a whole new appreciation for the brown stuff! Rediscovering herbal teas (the smell is still a bit potent) may take a little longer.

8) A saline flush tastes like mouldy oranges – and that orange-flavoured laxative drink they give you doesn’t taste like oranges at all: it would be fair to say, I will never look at an orange the same way again. I still love them, but don’t be surprised if I run out the room if I ever smell a mouldy one again. That PICC line (which I couldn’t imagine having inside me and then couldn’t imagine having out) has a lot to answer for.

9) There are women walking around with magnets in their knickers: yes, if you see a lady attaching herself to a supermarket trolley or opening a drawer with her pants, do not fear. She is probably just fed up of the hell that is the hot flush and desperate for a solution. For the record, it didn’t work for me so no need to keep me away from filing cabinets.

10) Boobs are pretty unexciting: breasts, boobs, jugs, melons, cupcakes and mounds. This year, I have seen (and spoken about) the lot and I have to tell you, they are not all they are cracked up to be. While I will always have a soft spot for my man-made mound, I have started to see boobs less as sexy body bits and more as mundane fleshy lumps. That doesn’t mean I will be stripping off at every available opportunity.

You certainly can’t say the last nine months have been boring. I would say they’ve been anything but.

Question is, knowing what I know now, will life ever be the same again? And, would I want it to be?

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

On By Jackie ScullyIn Breast reconstruction surgery, Fertility, Happiness5 Comments

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 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!