Breast cancer lesson 155: Why the end of active treatment can be the start of something beautiful

If you’d asked me on January 1 to predict how 2014 would have played out, I probably would have focused on the wedding planning and guest list writing. Little did I know, however, that the lump I had found by chance in my right breast on Christmas Eve – and written off as nothing – would change not just my 2014, but the rest of my life.

I would be lying if I said the last nine months have been easy. Two biopsies, lots of tumours, one major operation, one new boob, one surgically-flattened stomach, one course of IVF, seven embryos, four and a half months of chemo, six Zoladex injections, 24 immunity boosting injections, three tattoos, 15 radio blastings and a pharmacy load of pills does not a honeymoon make (I won’t even count the needles and the hospital appointments)!

But, the truth is, when I think back over this period of active treatment, I don’t see pain, I just see happiness. I have been turned inside out and put back together again and I am still smiling. It is not something I would have ever wished upon myself, but I have looked for the positives and found them in abundance.

As I see it, 2013 was the year I got cancer – the year that tried to take my life away. 2014 is the year I got my life back. And what a life it is!

Cancer has taught me so much – some of which I am still processing. But, the three things I am thinking about right now as I leave the hospital for the last time (for a good three weeks, which is a big deal) are these:

1) A life without the people who make you smile is no life at all: this world is full of beautiful people. And If you don’t agree, you’re not spending time in the right company. Just look at the face of a charity runner with the name of the person they’re running for on their back. Come to my house and see the wall of cards and messages that greet me as I come down the stairs each day. Have a look at my inbox! I will be forever grateful for the support, kindness and generosity shown by all those around me – from thoughtful old school friends and supportive colleagues, to amazing uni friends and new friends united by this challenging disease. I have made so many beautiful memories with beautiful friends this year and I feel truly blessed to have you all in my life. Thanks also to the kind strangers. Whether it’s a wonderful lady making PICC line covers in America, a designer drawing bespoke boob logos on my bed beanies, a nurse making me last in recovery or a hospital caterer offering me extra biscuits, I will never forget the smiles brought about by every act of kindness I have received. Here’s to more memory making (and more photographic evidence) in the next chapter. And more pink hearts of course!

2) I am who I am because of my imperfections: I have never loved my body before, because society is designed to insist I shouldn’t. But, I have learned to love what cancer has chosen to leave behind and I couldn’t be happier with what I see staring back at me in the mirror. My scars are still angry, my boob is still covered in cling film to stop the skin peeling off, I can’t feel my hands and feet and I may never be able to give birth to a child. You could say my body is broken, but I think I am stronger than ever. The mirror doesn’t remind me of cancer, it reminds me of just how far I have come in my life. I’m here and I’m smiling – and that’s all that matters.

3) Happiness is about making the best of every day and enjoying the everyday: when Duncan proposed to me I was so happy. At last we would get to have our big day. Now, I realise that it is wrong to focus on the ‘big’ days years in the future. Why dream about one day, when you can seek happiness every day. I am nearly at the end of my #100happydays project, and when I look at the photos I have posted I don’t see many huge milestones (today being one giant exception). I see home-grown veg, freshly-baked cake, moments with friends, a new ink cartridge in an old pen and a sunny day. I love what I see when I wake up in the morning and I know that life’s details – not special occasions – are what help us bank happiness. And, we all need to bank happiness, because we don’t know what’s round the corner. I fully intend to seize each and every day – and I hope you will too.

A few weeks after my diagnosis, Duncan turned to me and said he was sad that he had proposed to me. This wasn’t because he no longer wanted to marry me, but because he was sad to think that one of life’s loveliest milestones (one I had been pestering him about for years) had been tinged with sadness.

It didn’t take him long, however, to change his view. In asking me to marry him, he gave me hope. He gave me hope for a future of happy days in his company. And that is one of the greatest gifts I will ever receive. I will treasure every moment sat on the sofa, every moment walking through the park and every moment waking up at home with his face smiling back at me.

Thank you. Thank you for every word, every message, every hug, every square of chocolate and every flower. Thank you for believing in me and encouraging me the see the positives. Thank you for getting up early on a Sunday morning to run for charity, for sponsoring me and for donating pledges. Thank you for going out of your way for me. Thank you for making me the person I am today. If you’re really looking for somebody inspirational, I urge you to take one long look in your own mirror! Thank you.

This is it. This is day I have dreamed out. I can’t believe it’s here, but I am off to make the most of it!



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


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 148: Life is too short to save things for best

This morning, a rather surprising reminder popped up on my Blackberry alongside the ‘Take Clonidine’ and ‘rub in Doublebase’ requests. All it said was: ‘life is too short to save anything for best’. Quite why I thought to write it down and deliver it myself on this particular day, I will never know. But, I’m really glad I did.

Engaging with my possessions is something I’ve been doing a lot more of this year. I, like a lot of people in the world, have a tendency to put certain things in a ‘best’ category. And, when they achieve this coveted position, they are pretty much never seen again.

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Why is it I have immaculate-looking pans, but always default back to my university pan with dodgy handle and food-encrusted bottom? (Quite what masterpiece I think I’ll be rustling up, I’ll never know.) Why is it that tops I buy after dreaming about them for weeks are carefully preserved in my wardrobe? (I’m not sure my wardrobe appreciates them quite as much as I do.) Why is it that special stationery is always too special for my ideas? Why is it that hand cream seems like an essential purchase at the time even when I feel like I need a special occasion to use it? And, why is it that when a meal is deemed good enough to repeat, it gets popped in the recipe tin and somehow forgotten about? (I always seem to focus on new meals rather than old favourites.)

Why indeed! This year I have come to realise that there’s no point saving things for a special occasion, because that special occasion may never come. And, the trouble with the word ‘best’ is, you can rarely spot a ‘best’ moment because it is almost impossible to define. Saying ‘best’ takes away the hope of there being something better in the future.

I have come to the conclusion, as explained by the recent reintroduction of my school-time favourite fountain pen to my life, if you want a good day to be great, why not start by filling it with your favourite things? When I discovered the pen the other day while rummaging through my bedside table, I remember thinking to myself how much I used to enjoy writing with it. And, then I thought, if I love it so much, why am I not writing with it every single day. Before I knew it, I was popping in a fresh cartridge (from about the year 2000) and giving my writing finger back its old inky smudge. Before I knew it, I was smiling while writing the word ‘bleach’ on the supermarket shopping list.

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A special occasion isn’t something you wait for, it’s something you have to create – not just once in a while, but everyday. (Just to clarify, writing the word bleach is not a stand out moment in my life – things aren’t that bad!)

I remember a friend once telling me that she always wears good (and matching) knickers and bras just in case something happens to her and she ends up in hospital unexpectedly. Now, this might seem slightly macabre, but I like her thinking. Of course, at the moment, hospital trips are not unexpected for me and, I think that If I do end up in one unexpectedly, I won’t particularly care about the colour of my knickers and whether they match my bra (when you are used to a nurse pulling up your magic pants, it would seem strange to suddenly adopt such a view). And, I really would have to invest to be so co-ordinated. What I like is the idea that matching underwear actually means something to her. And, by wearing it every day, she is celebrating that fact every day.

So whatever it is (pants, socks, pens, notebooks or even glasses), I challenge you to stop thinking that the best is yet to come, and start bringing a bit of your best into daily life. If you’re waiting for that moment, chances are you’ll never get it. And, if you aren’t, who knows what doors will open for you when you’ve injected a little more happiness into your day? Please do post and share your favourite things. I won’t be posting a pic of my favourite knickers, but I can tell you I have a ‘best’ mug, cup, pen, pan and notebook (for starters). I even have ‘best’ marigolds!

I’m off to drink tea out of a special mug, eat my special chutney before it goes off and write on the first page of a special notebook (that’s about six years old). All while wearing a special top. Daring I know!

As a quick aside, radiotherapy is still ongoing. Amusingly, while writing this post in the waiting room, I heard my name being mentioned by the radio team. All I could hear was fragments, but I got ‘she’s the young one’ and ‘why don’t you just ask her?’. At that point, I started imagining what they might be thinking. Would I have to demonstrate something? Would I have to take my top off for somebody else? Would I be bumped down the list?

About five minutes later, I was greeted by a friendly lady who asked whether I would mind changing one of my appointment times to 8.30am. She thought she was asking a lot, so she was delighted when I reacted like I’d just won the lottery. Being called ‘the’ young one, however, reminded me just how few of us ‘young ones’ there are (thank goodness). I am happy to be the odd one out, but I’d rather be known as the smiley one who always seems happy when she’s writing with her very nice fountain pen :-).

Breast cancer lesson 146: Time flies when you’re having a blast

It seems like only yesterday I was lying down to face my first tattoos. Now, four radiotherapy treatments down and I have completed my first week. There’s nothing like a daily mid-afternoon date with the hospital to make those days disappear – and fast!

So what have I learned from these daily doses? Here’s a quick rundown:

1) Don’t forget your dressing gown belt: it may seem like an insignificant detail, but a dressing gown without a belt just means you will flash more people than is really necessary.
2) Turn it around: to preserve your dignity a little longer, wear your dressing gown the wrong way round. That way, when you lie down on the bed, the technicians only need to reveal the blast area.
3) You can wash those felt-tip pen marks off: thanks to all those who advised me of this. It does seem like they only need to play noughts and crosses on your boob at the first session though. It’s just been one mark ever since.
4) Doublebase cream is your friend: what I love about this twice-daily (at least) ritual is the fact that it forces me to do a bit of scar massage at the same time. Doublebase may look thick and gooey, but it is actually lovely on the skin. Creaming first thing and at night works for me (it has to be two hours before treatment so it has time to absorb).
5) Practise your best rag doll pose: Tempting as it is to help the technicians get you into the correct position, it is best to let yourself go heavy on the bed so they can get wiggling.
6) Arriving early for an appointment is no bad thing: while I have never been called before my slot, it is better to check in than kill time in the hospital foyer, so you are more likely to be seen on time.
7) Keep it loose: while it is still early days for the skin, I am already seeing the benefits of keeping your clothes loose to reduce friction. It’s also good to carry your handbag on the other shoulder.
8) Clear that diary: radiotherapy schedules do change. It’s day four and I am on my third timetable. While you can move things around, it is good to avoid anything that puts you under extra time pressure (especially if your treatment is taking place underground with zero reception).
9) Expect to be taped up…but only on the first appointment: there is more setup involved at the first treatment, so you may find you have wires taped to your boob. Photos are also taken daily for the first few appointments (in my case four) before going weekly. Things speed up when there’s no topless photo shoot involved!
10) Don’t forget to breathe: if, like me, you become fascinated by the way the laser moves across your skin when you breathe in, don’t try and stop it by holding your breath (although this may be different if treatment is to the left side close to the heart). As a friend pointed out, you then have to breathe deeper to catch up – therefore moving the laser even more.
11) Keep that jewellery to a minimum: the post-radio hunt round the handbag for the rings, bracelet, watch and earrings keeps me in the changing cubicle for so long, I am convinced they must think I don’t know how to dress myself.
12) Pack that radio bag – and leave it that way: one foolproof way to remember your dressing gown (and belt), radiotherapy cloth, good book and appointment card, is to keep it together in a bag and leave it by the front door. Avoids all that last minute rushing too (unless, like me, you have sourdough bread in the oven that refuses to go brown)!

If reading this list makes you feel exhausted, you’ll appreciate just how significant the latest developments in radiotherapy treatment really are. In July, news reports applauded the introduction of intrabeam radiotherapy, which is administered at the time of breast surgery when the tumour is being removed. While I believe it can only be used when the tumour is contained within the breast tissue with no further spread, if this becomes standard practice, it could transform the lives of those going through treatment. As much as I admire and love my hospital for all it has done for me, I think daily visits are a little too much.

Four days in and I have my routine. Just 11 sessions left to go until the end of active treatment! Woohoo!


Breast cancer lesson 145: May the force be with you. When radiotherapy meets Star Wars

Of all the things I thought would be discussed in a radiotherapy treatment room, Star Wars was not one of them. Today, however, after a bit of banter about how difficult it is to describe the experience of going through a blasting, one of the ladies handed me a piece of paper with the following words on it: ‘Linear accelerator Star Wars (or LINAC)’.

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Typed into Google, this is what you get:

For those unacquainted with a radiotherapy room (you lucky things), this Star Wars figurine is sat on a linear accelerator (or LINAC), which is the device most commonly used for external beam radiation treatments. I love the fact he’s zapping planet tumour with his red laser beams!

Ok, so while not quite as futuristic as a Star Wars movie, I think it demonstrates the fact radiotherapy is quite unlike another other form of medical treatment. It also demonstrates that, even in a 15-minute appointment, there is always room for a bit of banter.

Even without the ‘force’ on my side, today’s blasting was so much more relaxing.

No tapes, no wires, just one felt-tip pen mark and a lot more laughter. (Apparently the appointments get quicker as they become more confident with the positioning. I will move to weekly photos after day 3 if everything is still ok.) I was also in and out of the hospital within 25 minutes flat, which is certainly a new personal best in terms of appointments.

There was even time for a photo or two given things were running to time.

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This is Elekta 4. She may look like a giant version of something you’d find at the hairdressers (and if you don’t agree, forgive me, I haven’t been in a while :-)), but I certainly wouldn’t mess with her. She can deliver high-energy x-rays, which makes her a pretty special cancer-fighting machine. You can also see the plinths on which I have to rest my arms while the dose is delivered. (Once again, I had issues with tingling and a dead arm, so am hoping that will improve.)

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And this is the autumnal forest scene designed to distract me from the ceiling tiles (Elekta 1 doesn’t have such a scene). I am so glad it was there, because I spent most of the treatment suppressing the urge to wriggle about (why is it when you are forced to lie still you are so tempted to move?). It also distracted me from the fact that every time I took a breath, I could see the green laser moving. I decided it might be best to hold my breath, but that wasn’t particularly fun. I then decided that I think way too much when left alone in a room with a high-tech piece of medical equipment. It would be far better for me to imagine myself walking among the autumn leaves, which I think is the idea. 

It’s back to the ceiling tiles for tomorrow’s blast. I can do without the autumn leaves, but now have high expectations for the level of banter now possible. If you have a burning question about radio (or other interesting radiotherapy-related You Tube clips) please post here. Happy to ask away.

Two down, 13 to go…

Breast cancer lesson 144: How to have a blast in the radiotherapy room

Thank you Emily Barr. Oh, how I needed you and your gripping novel in the radiotherapy waiting room. Once more the odd one out (half the age of anyone else waiting and one of the only ones not being asked to drink water), a good book was the only thing stopping me from staring aimlessly at the ceiling and wishing I had a few more wrinkles and a bit more hair (except for a few men, I was the only baldie as well as the baby of the group).

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Of course, the need for reading matter wasn’t the only discovery I made at this, my first radio blasting. I think the most essential item I won’t be forgetting tomorrow is my dressing gown belt. Having applauded myself for remembering to pack my dressing gown, I was amused to learn that, without its belt, it is about as useful at preserving your dignity as a hospital gown. Wearing it backwards, so it can be whipped off at the last minute meant that I gave all that could see me a good look at my naked back. It was a small crowd, but having not had to strip for a good few weeks, I was a little out of practice.

Before the main event, I was treated to a quick overview, reminding me of the need to cream up and not shave (not that there is anything to shave). I was asked to sign a form declaring I wasn’t pregnant, recall the date of my last period (to which I answered ‘March-ish’) and confirm I understood the daily drill. I was slightly surprised to be handed a new sheet highlighting that a good number of my appointment times have already been altered (and that I will be meeting Elekta 1 and 4 now). It looks like my life (and my diary) is now firmly in the hands of the NHS for the next three weeks and it seems I will now be enjoying many an evening in its company!

As appointments go, it was pretty futuristic, if you ignore the office-like ceiling tiles and the old-fashioned swimming pool-like changing cubicles. Here’s a quick rundown:

  • On entering the room, I was asked to lie down on the bed, position my feet up against a foot rest and raise my arms above my head (in exactly the same way as I did for the planning appointment). I was then wiggled around a bit (it’s very important you don’t help with the wiggling even though you want to be useful).
  • Once in position, the three people in the room started speaking in code (basically a series of measurements) and drawing on me in felt tip pen to ensure they lined me up correctly. Green lasers and what looked like a ruler were projected onto my skin and I was even treated to a few bits of tape, which were fixed to the breast and above and attached to wires. I believe this is to help them work out that the right dose is getting to the right part of the treatment area.
  • When the team were happy with my positioning, they left the room while the chest area was x-rayed. This is to make sure the position matches that of the radiotherapy planning appointment. I, meanwhile, just had to lie still and go to my happy place (which included trying to get intimately acquainted with those ceiling tiles).
  • After that, the machine clicked a few times to help the team focus in on the area to be blasted. The clicking was followed by a series of fairly loud noises (a bit like tinny buzzing). Then it was all over and I was free to leave with my felt tip pen marks and belt-less dressing gown.

The entire appointment (excluding waiting time) lasted about 25 minutes.

Was it painless? Not completely. While the treatment itself caused no pain, the ongoing tingling problems I have in my hands meant that when I raised them above my head, my right side decided to go dead (in that way limbs often do in bed). Normally, I would just move and shrug it off. Fifteen minutes in the same position without moving a muscle, however, and I wasn’t sure my arm would ever come back to life. Thankfully, it is typing now, so order has been restored.

By the way, I now know what this interesting piece of cloth is. It is less a medical gismo and more a piece of material designed to stop me sticking to the bed. It also helps them move me around without (in the words of my radiotherapist) ‘any heavy handling’. I thought it had magical properties. But, no, turns out it is just a cloth!

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How does it feel now? My boob is twitching slightly but otherwise fine. I feel a bit sleepy, but that is probably more to do with the build up than anything else. Mostly, I just feel a bit weird (nice and medical for you). I must confess, being back in hospital, reminded of the invisible illness that tried to steal away my life, while being blasted with invisible doses of radiation is actually not that fun. And, the worst part is, I have to do it all over again tomorrow – at 4.45pm. Rush hour and radiation! Whoop! And this is supposed to be the easy part!

If anyone knows whether or not it is ok to wash off these rather exciting black felt-tip pen marks, please let me know.

Now all I need to do is find that dressing gown belt!

Breast cancer lesson 143: Let the blasting begin!

Radiotherapy is now all that stands between me and the end of active treatment. 

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Tomorrow, I will go in for the first of fifteen blasts to my chest area and collar bone. And, in three weeks time, (if we ignore the fact the side effects are often worse a few weeks after treatment, I will still have side effects from chemo, no hair and ten years of drugs to take – not to mention a new nipple and tattoo to secure), it will all be over! No more needles. No more frequent visits to the hospital. No more cancer. Just me, a daily reminder in pill shape form and the determination to see the brighter side of life.

Up until now, I have seen radiotherapy as less of a treatment and more as the only thing stopping me from closing the door on this hospital-focused chapter of my life and moving forward. Now, as the day approaches, however, I confess I am a little nervous. I have been told that if you can handle chemo, you can more than handle radiotherapy. But, never one to get complacent, I don’t think I will feel entirely comfortable until I have stripped off and lifted my arms above my head a few times. 

Of course, while it hasn’t plagued every waking moment, I am prepared for this next stage. I have my dressing gown, appointment card and that strange piece of cloth I was given at the ready and I’ve been creaming the area since Thursday to get the skin ready for its close up. I have my tattoos (which still make me laugh every time I look at them) and I have already been thinking about which loose clothes and bras I can wear that hopefully won’t break the skin (they suggest you don’t wear dresses so you don’t have to strip each time). The information sheet warns against the wearing of ‘tight elastic undergarments’. I am just hoping one of my bras fits the bill otherwise running may prove a little tricky. 

Cream recommendations vary from hospital to hospital. For me, the recommendation is Doublebase, which I would describe as a gunge-like gel. Skin reactions are common, however, so I am creaming up two to three times a day and will avoid any other deodorants and shower gels for the period (thank goodness they removed my sweat glands in surgery). The advice is to use a small amount on the treatment area, massaging it in with the fingertips. The aim is to get a light covering so the cream absorbs easily. 

Amusingly, I was told that the only way radiotherapy can be effective is if you don’t miss a session and are blasted for five days in a row. I guess if that were completely true, we wouldn’t be honouring the August bank holiday! My treatment now starts on a Tuesday and finishes on a Monday! 

Oh, and just in case you were wondering, external radiotherapy does not make you radioactive. I will not glow yellow or look like an extra from a nuclear disaster movie. I will just be me – but maybe with a red boob and baggy tops! 

I am ready to meet Elekta (yes, my radiotherapy machine has a name). Wish me luck! 

NB: if you’ve recently discovered you’re due to have radiotherapy and would like to know more about the planning appointment, click here to read lesson 133. 

Breast cancer lesson 133: Embrace those tattoos! It’s radio planning time

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It’s official. I am a rebel. This morning I woke up a tattooless woman. Now, I have three!

Ok, so when I say tattoos, they are pretty unremarkable. Here’s one, and I must say it looks more like a misplaced biro mark or poppy seed. It certainly won’t be doing the rounds at parties, that’s for sure! But it is permanent and the hospital radiographer used the word ‘tattoos’ so I’m taking it. Surgery took my boob and tummy fat, chemo took the hair I spent 32 years learning how to style (it won’t come back exactly the same I doubt – let’s just hope it’s not grey) and will no doubt scar me in some other way, so I see this as radiotherapy’s way of getting in on the action and making its mark.

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As appointments go, the radiotherapy planning session is fascinating. Down in the windowless lower ground floor of the hospital I sat in a waiting room with just one other (a rare treat) ready for my biro dots. Here’s what happened:

  • It started with a quick pep talk from a radiographer. She talked me through the planning session, checked it was me who signed the consent form and took a photo (just to make sure they blast the right person in future).
  • Next, I was collected once more from the waiting room and ushered into a room with a CT scanner, a bed and a variety of plinths. The team of three (including a student) were really friendly and it was lovely to see them getting on so well. I was also amused by the party mix playing in the background, which was later revealed to be a playlist from someone’s younger days. Certainly livened up proceedings.
  • Once I’d taken my top off (again) and popped on a gown (best to wear a top and skirt or trousers rather than a dress so you don’t have to take everything off), I was asked to sit on the edge of the bed in a specific position. I then had to lift my legs up to rest against a metal plate at the end of the bed, before shuffling my bum to rest against something behind me. Bum in place, I was asked to lie down, clasp my hands together and raise them above my head, placing my arms into two arm rests. Finally, I was wiggled around (they ask you to let yourself go heavy in the bed so they do all the moving) to get my body in the correct position.
    2014-08-07 16.07.38
  • Position sorted, the felt tip pen came out. Then started the art class all over my boobs! Here’s one of the marks (that thankfully I do get to wash off tonight). The marks were accompanied by little stickers and lots of shouting out of letters and numbers (apparently my arms are CYK). I believe this is to make sure they record accurate measurements so that I am positioned in exactly the same way for every dose.
  • Art class complete, the CT scanning began. It takes a matter of moments and is completely painless. I did start to get pins and needles up my arm at one point (I think this may have something to do with the ongoing peripheral neuropathy in my hands), but thankfully it did fade so I didn’t need to move.
  • After the scan came the fun part – the tattoos. A bit of ink, a few tiny pricks, some cotton wool to stem the slight bleeding (I bleed at the sight of a needle) and it was all done!
  • Dignity restored, I was handed a piece of material to bring with me to each session (I was lying on it so imagine it is to do with the alignment or protection – if you know please post here) and my times for the 15 blasts. I now know that 2pm on Monday 15 September is the end! 
    2014-08-07 17.01.13

Lesson of the day? Don’t wear a white bra and shirt to a radio planning meeting. A bit of blood and felt tip do not clean clothes make! Also, maybe best not to wear sandals in hot weather that make your feet a little whiffy. 

I was also amused that the book I am currently reading started to allude to the children’s book We’re going on a bear hunt just before I was called in for my appointment. Regular readers may remember my connection with the book and the words inside. Click here for lesson 107 and a quick reminder! 

Biro dots in place, I am ready for my blasting!

NB: as a side note, my piece on running for Breast Cancer Care, has been picked up by The Guardian and is currently on the homepage and the Life and Style section. Duncan’s marvellous pink shorts have made it into the nationals! Click here to see them in all their glory.

Breast cancer lesson 125: Active treatment is like a roll of toilet paper. The closer you get to the end, the faster it goes

2014-07-16 16.19.06

Today was a big day. One last weigh-in. One last meeting with the oncology nurse (who loved her pink heart). One last chemo blood test. One last trip to the hospital pharmacy. And, one whistle-stop tour through the world of radiotherapy with an oncologist, my mum and two work experience students.

For me, the word radiotherapy means end. Yes, I will have to take hormone therapy drug Tamoxifen for ten years. But, when I walk out of the hospital on the last day of radio, active treatment will be officially over. And, just knowing that that day is no longer a day buried far in the future, is a fantastic feeling.

Radiotherapy is radiation treatment, designed to damage the body’s cells in a specific area. In my case, there are two specific areas. One is the chest wall and the other is the area above the collarbone where more of my lymph nodes are currently hiding. The two treatments are going to be run side by side, which means only 15 days of blasting! WOOHOO!

It does feel in many ways that they are saving the best treatment for last. For starters, the PICC line is coming out on Friday, so there won’t be any drugs involved. Secondly, the list of side effects is contained to one sheet (I think the seven-page chemo consent form will be imprinted on my memory for life). The main side effects are skin reactions and tiredness, both of which I would take tomorrow if it meant I could taste, sleep and not have to watch toxic drugs travel through a tube into my veins.

There are, of course, a number of other less common side effects that can present themselves even years afterwards. These include breast swelling, chest tenderness, the creation of scar tissue, rib fracture, breathlessness and, yes, more cancer (extremely rare as you can imagine). But, the benefits (risk of recurrence reduced by two thirds) make the risks more than worthwhile.

The appointment was an interesting one, with everything explained in full for the benefit of the two work experience students (and me of course). We started by talking through the treatment, the fact I have to have a planning session with a CT scan and some tattoos (the rebel I am!), followed by a ten-day wait before treatment can start. We then tested out the radiotherapy position (basically arms in the air) and had a good look at the area. The oncologist was very complimentary about my new boob (thankfully this part of the appointment wasn’t open to the 16-year-olds!). She even thought I was looking pretty symmetrical! I’ll take that!

No course of cancer treatment would be complete without the obligatory ‘banned’ list. And, unsurprisingly, there are a few comforts on there that are about to be taken away (should be used to it by now). Here’s a quick run down:

1)     No hot water when washing and no long soaks in the bath (that’s a shame now I have learned how to blow up my inflatable bath pillow)
2)     No shower gel, bath oils or bubble bath in treatment area (lovely!)
3)     No rubbing with a towel (ok, patting it is)
4)     No talcum powder (no real loss)
5)     No shaving under the arm (there’s no hair there anyway at the moment!)
6)     No perfumed moisturiser on the area (Doublebase or E45 is recommended)
7)     No tight-fitting clothing (what will I do with all those boob tubes J)
8)     No under-wired, lacy or tight bras (surgery sorted that out long ago)
9)     No swimming (the opening of the Olympic pool so close to my house still hurts me)
10)  No sun exposure for a YEAR (probably a good thing given my tendency to go red just looking at the sun)
11)  No hot water bottles (I think I should be ok in August!)

One radiotherapy planning appointment, one CT scan, three tattoos and 15 blasts of radiotherapy stand between me and the end of active treatment (please note the distinct lack of needles or scary tubes). That is, once I have navigated a little thing called THE LAST CHEMO on Friday! Wish me luck!