Breast cancer lesson number 42: Make your next appointment a real treat

If my diary is anything to go by, I can tell you now, NHS staff are busy (and I mean busy). Let’s face it, when undergoing active treatment, a week without a trip to the hospital (or a least a series of letters) can seem a bit disconcerting.

Stood waiting for the nurse to puncture me with a giant needle and implant of Zoladex this morning, however, I was hit not by the fact it was my third appointment of the week and it was only Tuesday, but by the fact that it was before 9am and the waiting room was packed. On each warm seat was a patient (or supportive shoulder) with their own story, their own medical history and their own treatment plan. Each one of those patients needed time. But, when you have a waiting room overflowing with people, time is the one thing in short supply.

I am in awe of the NHS. This has nothing to do with the number of needles that have made it under my skin over the last 32 years, the eight general anaesthetic procedures I have now racked up or the phone system that you do occasionally get lost in. This has everything to do with the level of care that I have received – and continue to receive – on a daily basis. It’s the breast care nurse who attended my oncology appointment yesterday just because she wanted to catch up with me. It’s the surgeon who stopped me in the corridor to tell me I was looking well. It’s the student nurse who took me to the toilet seven times in one day on the ward and gave me a wonderful shower when I couldn’t move properly. It’s the receptionist who said how great it was to see me smile. See the NHS as a large, flawed, headline-making system and you miss the point. The NHS is an awe-inspiring service filled with people who give over their lives to make the lives of strangers just that little bit better. Don’t believe me? I challenge you to go and sit in an oncology waiting room. Then, you won’t disagree.

The trouble with cancer (like so many serious and debilitating illnesses), however, is that appointment times and treatment plans are only half the battle. A consultation provides merely a window into the life you are leading and each one is often determined by the way you are feeling when you get up that day. Away from the bright lights, the smell of alcohol wipes and the understanding faces, when it’s just you and the ‘big C’, it’s easy to feel alone and invisible. The experts are working tirelessly to save your life and reassure you at every stage. They can’t be there to help with through daily exercises, to rub oil into your scars or support you as you shape a new life plan.

I am a great believer that the more positive I am when I embark on a new course of treatment, the happier I’ll be both going through – and at the end of – it. That’s why I decided early on that I needed to find a place to go where I could be treated (in a pleasurable way), supported and encouraged to rebuild my body and my life (with not a needle in sight). The good thing about living in London is, it didn’t take me long to find it. It’s called The Haven, and I have just spent the day there exploring the wonders of Qi gong and discovering a few nutritional secrets – and surprises.

Haven by name and haven by nature, the centre is designed to help anyone affected by breast cancer. Here, deciding your treatment plan is less about the size of your tumour and more about whether you’d prefer to try a bit of homeopathy, Shiatsu or craniosacral therapy. Although there are currently three centres, this is a charity with no geographical boundaries. The therapists will skype, call, email or meet in their attempts to reach as many patients as possible. It’s the care that starts when the NHS consultation room door closes.

I learned some interesting things today, not least about blood sugar management. Here are a few fast facts to tease your palate:

1)    Cinnamon mimics insulin (will be sprinkling more liberally in future)
2)    The health benefits of turmeric are only felt by combining it with black pepper
3)    Cooking with lard is not always a bad thing (in fact cooking in lard is considered better than cooking with vegetable oil)
4)    My desire to have eggs with everything could work in my favour
5)    Apparently, try a bit of raw butter and you’ll never go back
6)    Herbs and spices are a girl’s best friend. Not only do they pack meals with great flavours, they’re superb for the body too.
7)    I drink too much tea (and wine)

I came away feeling relaxed, inspired and with a burning desire to eat porridge for breakfast all next week. Talking of food, I can confirm there is actually no fat to be grabbed from my tummy currently (I appreciate this has been engineered, but it still felt good to hear it). The nurse this morning remarked on it and I was enjoying this news until I realised it wasn’t actually a compliment – it was a problem (that was where the giant needle needed to go). Thankfully, my left side stepped up to the table. All I can say to anyone having the Zoladex implant is don’t look at the needle (especially not if you’re not having cream to numb the area)!

Today taught me that it’s healthy to see more than the hospital waiting room. Fill your diary with things that make you smile and appointment times with only positive side effects and you’ll find you’re a lot stronger when it comes to facing the milestone meetings and sharp and increasing-large needles. You’ll feel better and, so too will the team dedicated to helping you get through each treatment stage.

Let the hospital save your life and the Haven (or an equivalent near you) help you get your life back.

NB: In case you’re interested, we got seven embryos. We may never have to use them, but they’re in the freezer for the next decade!

Breast cancer lesson number 40: Cancer treatment is like a punishing endurance challenge. Savour those checkpoints

For me, breast cancer treatment is a five-stage race. First, you lay down on a slab and get rid of the troublesome cancer. Stage one, tick (if we ignore the fact I have to get a little cosmetic adjustment at some point in the future). Next, you get to store some babies in the freezer. Stage two, tick. With fertility over, your veins get a high dose of body-killing (or life-saving) chemo drugs. Stage three, tick. Once your body has started to recover, you get a blast of high-energy radiation. Stage four, tick. Then, if you’re still standing, you say goodbye to daily hospital visits and hello to daily doses of oestrogen-blocking pills. The finish line is currently scheduled for some time in 2019, and I have no plans to go back in training after that! After that, the only races I’ll be tackling will be charitable ones!

Tomorrow is the end of stage two. That makes it a special day (one refreshing checkpoint in this epic race). With the end of stage three planned for mid-August, it will be a while before I once again feel like I am one stage closer to the home straight. Chemo is a long stretch and I know I’ll need all my energy just to get to the end.

I have to say, sitting here with a bloated stomach that makes me wants to live in the toilet, tomorrow cannot come soon enough. I certainly don’t think a body corset, tummy scar and enlarged egg-stuffed ovaries – combined with a functioning bladder and stomach – belong together. I feel like someone is bouncing on my stomach and there isn’t enough skin to go around. Starting to find the idea of a needle in my ovaries rather attractive.

What did I feel like after completing stage one? First, there was pain. Then, there was immense relief. I’d like to say I was dancing around my hospital bed. But, let’s face it, I could barely stand. How do I think I will feel if we are lucky enough to pop some embryos in a freezer bag? First, I will be happy that the baby back-up plan is in place. Then, relief that I can walk from the living room to the kitchen without needing a wee. (I also quite like the idea of a fridge that isn’t full of syringes and vials.) Neither of these sound like great moments of celebration or markers in history. But, when there is life at stake, you’ve just got to be happy you registered for the right race and are running in the right direction.

Cancer checkpoints don’t come along very often. When they do, whether you’re on morphine or Merlot, you’ve got to grab them, get the most out of them and use the happiness (or relief) they bring to take you forward into the next stage. I may be more likely to be raising a mug of tea than a glass of wine at the moment (last night aside), but I am determined to make sure each one of these stages does not go by unnoticed (I think a lot of people design a sign to mark their last chemo session, so that’s on the to-do list for stage three). You may lose a few consultants and nurses along the way, but that doesn’t mean there are any less people rooting for you to succeed. There are just a few less appointments to attend, a few less needles and a few less worries to occupy your fact-filled mind.

This is a race I will complete – and there will be a big smile waiting for me at the finish line (and probably one of the many bottles of engagement champagne currently gathering dust in the cupboard). I am not going for a personal best and there won’t be a medal at the end of it, but there will be life. I hope you’ll be there to cheer me home. 

Breast cancer lesson number 39: Timing is everything!

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This is it. Inside this box is the last injection I have to administer myself as part of the fertility process (we won’t talk about the chemo-related ones just yet). No more Menopur. No more Cetrotide. Just two Letrozole anti-cancer pills and an injection stand between me and being able to have my eggs collected at 3.30pm on Monday.

Ovitrelle is a trigger injection. It stimulates the final maturation of eggs in the ovaries. That means, once I have jabbed myself with this last needle, there is no going back. I will be on the slab on Monday and, with any luck, we’ll have embryos in the freezer soon after that. The procedure to extract these eggs is something I have just read about (although wish I hadn’t) and is something I will not be reporting here. Ok, so it’s not on a par with having your stomach cut open and the boob chopped off, but I am glad I am asleep for it. If curiosity is getting the better of you, click here for the science, but please don’t ever bring it up over dinner! 

For the trigger to be effective, timing is everything. So, mum will be keeping me company tonight until 2am when I can deliver the final and important dose (she might get to watch Les Mis from start to finish as a treat). Then I get a day off drugs tomorrow (my body will probably go into shock), a light breakfast of tea and toast at 6am on Monday and a date with a cannula and some IV sedation later that day.

Of course, when the nurse called, I had my priorities right. One, what do I do with the sharps box of syringes that is currently making the kitchen look untidy? Two, what to do with all the leftover drugs in the fridge? (Sadly the answer in both cases is to bring them with us, which means we’ll be heading to oncology looking like a portable pharmacy or like we’re about to have a picnic in the waiting room. Let’s hope I get to keep the cold bag!). Three, if I’m at the hospital all day, when do I take my suppository? (There was a lot of laughter attached to that answer and you really don’t want to know more). And four, (arguably the most important question) can I have a glass of wine with dinner? I am glad to report, I got a whole-hearted ‘absolutely’ in response! (Better set the phone alarm for 1.55am just in case)!

There is one last – and rather unexpected – obstacle to overcome in this fertility challenge. It’s brown, it has a tail and it likes to enter our kitchen at night and camp out under the dishwasher. We’ve being trying to get rid of our visiting rat for nearly two weeks, but we do have an understanding that we just don’t enter its trap-filled and Nutella-fuelled lair at night. With refrigerated drugs to take, I think I may have to take a torch and some back-up if I stand a chance of getting to the pre-filled syringe without getting nibbled.

Oh yes, don’t think just because you get cancer, you can avoid first world problems. I have a list!

One last needle, one last shot of drugs and one chance to make embryos. Cancer won’t wait for a second cycle. We have everything crossed!

Breast cancer lesson number 38: If at first you don’t succeed, try, try again

Today was supposed to be a simple day. First, head to assisted conception to try and schedule my egg collection at a time that meant I could keep my oncology appointment on Monday too. Then, head to the breast clinic for the second of my arm measurements in the Lymphoedema clinical trial. In short, have a chat and stretch your arm out straight. Now, how hard could that be?

As it turns out, pretty hard. Nothing is ever quite as simple as it seems. Take assisted conception. It seems the Monday egg collection list that ‘isn’t planned until tomorrow when they know how many people are on it,’ is already pretty much full for the morning. I can only assume that has something to do with the volume of private patients on the collection list. Currently, I don’t appear on any list, but am just hoping my request to schedule it around my noon oncology and blood test appointment is taken on board, otherwise oncology might not be too pleased. Two blood tests, one suppository, one IV sedation, one egg collection and more discussions about toxic drugs await me on Monday. I’m already excited!

Determined to achieve something today, I set off to the breast clinic, practising my arm exercises on the way. As anyone who has read lesson 11 will know, I have dedicated my arm to science in order to help those trying to detect Lymphoedema as early as possible. The challenge for today? Can I get my right arm out as straight as I did a month ago? The answer? No chance. I tried (twice) and failed (twice). We even made a little graph out of the data to show me just how far off I was. My homework? More exercises until my arm is poker straight. They have two weeks to get the reading. I have two weeks to walk my arm up a wall and get it just that little bit straighter – and higher – than it is at the moment. At least I got my height measured so it wasn’t such a wasted trip for measurement man (not something I could fail at so easily)!

For those of you thinking: ‘but I thought she had breast and tummy surgery, so why is her arm hurting?,’ don’t worry, you haven’t missed a chapter. My restricted arm movement is as a result of having my lymph nodes removed (thankfully I did, given the cancer in one of the infected nodes had already spread out into the surrounding tissue). The surgery has given me a partially-numb, quite swollen and very sore right arm. It feels like someone has tightened everything inside my arm and it needs a while to loosen up. Think alien limb (whose only friend is numb new boob), and you’re not far off. With alien arm, I can write (for short periods), I can knit (for shorter periods), I can cook (as long as I don’t lift heavy pans), I can play quoits (albeit very badly) and I can lift tea (at any time), I just can’t carry supermarket shopping or, it seems, pass clinical trial tests.

Apart from a sore arm, the one thing no ANC (which means anxillary node clearance for anyone counting abbreviations after Saturday’s lesson) patient wants is Lymphoedema – or swelling. Without the lymph nodes to drain fluid from the arm, lymphatic fluid can build up in the surrounding tissues. It can be controlled, but, once it has developed (and it can develop any time in the future), it is unlikely to ever go away.

A compression sleeve is not something I’d like to wear with a wedding dress, so I am currently surrounding myself with as many tips and hints as possible to avoid getting injured or infected on that side. No one really knows what causes Lymphoedema (hence why I am on a trial), but this never-again-on-right-arm list should help reduce the risks:

The banned list

1)   Soap that dries out the skin (unperfumed moisturiser is a must for the kit bag). I think I can handle that.
2)   Very hot (or very cold water). They mention steam rooms and saunas, but am hoping occasional use is ok.
3)   Acupuncture on ‘at-risk’ arm (plenty more places to prick thankfully)
4)   Injections (woohoo!)
5)   Blood pressure cuffs (another woohoo! Quite liked it on my leg in hospital)
6)   Blood tests (don’t I know it!)
7)   Lots of weight gain (I will try, but who knows what chemo will do to me)
8)   Walking around with robot arm (being my right arm, am desperate to use it normally, so am not auditioning for a role in Star Wars)
9)   Deep tissue massage unless practitioner is specifically trained (they really know how to take away all my fun)
10) Sunburn (I have never actively tried to get burnt, but my skin just likes turning red when it looks at the sun. This could be challenging)
11)  Biting of nails (tried once, couldn’t work out how to bite them. Won’t be starting now)
12)  Washing up and gardening without gloves (I confess, I have bright pink marigolds, but am yet to put them on)
13)  Waxing or shaving the armpit with a manual razor (am hoping chemo will take care of any unwanted hair for a while)
14)  Tight jewellery or clothing (should be ok)
15)  Heavy shoulder bags (given I love to carry at least two bags at any one time, this is going to be particularly challenging)
16)  Arm strain through digging, pulling or lifting heavy bags (sounds like permission to sit drinking Pimms while Duncan does the gardening if you ask me)

NB: Please comment and add if I’ve missed any tips

Looks like I am going to become very closely acquainted with a large tub of aqueous cream (currently being applied to my tummy and boob) and antiseptic lotion (my new best friend should I get a cut, bite or baking burn).

I may have failed to achieve today’s tasks, but I still left the hospital with a spring in my step. While measurement man was measuring my height in the corridor, my breast surgeon did a double take and, realising it was me, came along to say hello. Impressed by how straight and well I looked, he gave me the biggest of smiles and said how lovely it was to see me. It may not have been a statement based on any medical examination (and I didn’t have the heart to tell him I had failed the arm test), but his smile certainly made me feel I must be doing something right. I’ll take that.

Let’s hope I can successfully be in two places at once on Monday – and that somebody will be able to find a vein!

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

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 35: It’s ok to not be ok

I have a confession. Last night, I cried while trying to inject myself with my Menopur drugs. I sat looking at the needle that I was about to inject into an already sore and bruised thigh and I cried and I cried and I cried.

I cried not because it was yet another needle (although 13 needles in two days, is not fun). I cried not because the fertility department hadn’t called me back to advise me on dosage so I didn’t know what to inject (although that was a little concerning, because I don’t want to be hyper stimulated!). No, I cried because I was weary and the thought of seeing more blood and being the one to inflict yet another bruise made me sad.

My body is fighting the pains that come from having my tummy turned into a boob and my lymph nodes removed. My body is fighting every time it gets confronted with a needle. My body has a cocktail of anti-cancer drugs and fertility hormones swirling around inside it. My body needs a day off from fighting. The trouble is, that day is about six months away.

I promised myself when I started this blog that I would be honest and true to myself throughout. I have, up to now, been incredibly positive. I have smiled in the face of cancer. I have been diligent in my research and have made all the right noises. I wanted to be a great and patient patient. And, you know what? I will do and be all of those things again and again.

But, right now, as I sit on the sofa I am not being brave or strong or inspirational. Today, I’m just being me. And that’s ok. Today, I am hurting. And, the fact is, that’s ok too. I am writing this post, not because I want people to feel sad for me, but because I want to reach out to those experiencing challenging times and say, it’s ok to not be ok. You’re not made up of a series of powerfully positive personality traits. You just have to be what your body allows you to be when you wake up each day. And, listening to your body and admitting that it’s ok to not always be a pillar of strength is probably the greatest lesson you’ll ever learn. It’s hard, but it’s also quite liberating.

Ask me how I’m feeling right now and I’ll tell you. I feel like I have already run a marathon but am back at the starting line (complete with injuries from the first one) waiting to go again. I want to stop, rest and heal but I can’t, because I’m running for my life. I also want to give Duncan and I the chance to be parents. That’s a big thing. Cram it in between major surgery and chemo and it’s still a big thing. It’s just that there are two other really big things either side fighting for attention.

Yesterday, my lovely oncologist turned to me and said that he was behind me 110% and would be there to support me through this next phase. He also said that there will come a time when I will desperately want it to stop. When that time comes he said he will remind me of the need to keep going. This was a pep talk unlike any other pep talk I have ever received. For surgery, they told me it would hurt, but if I did my exercises, I would recover. It did, I am and I will. For fertility, they told me to inject, inject, inject and then they will eventually inject me for once and take my eggs. I am and they will. The experts are usually spot on. Based on yesterday’s conversation, I should be preparing for the fight of my life. I need to be ready. But, when you’re covered in bruises and you’re just piling on the pain, it’s hard to get ready.

Yesterday, instead of trying to take the title of world’s best patient (I seem to have a burning desire to be a textbook student in every consultation because I think people often forget that doctors and nurses are humans too with real lives away from the ones they’re trying to save), I should have just accepted the support available and explained how scared I am. The truth is, there is no such thing as the world’s best patient (and if there is, don’t tell me because I don’t want to be tempted to apply). No patient is good or bad. Everyone is different and, while it’s nice to be the nice one in the waiting room, I am just another name on a long list of cancer patients. Nice people don’t queue jump or get better drugs (just extra biscuits if they’re lucky). I will continue being nice, but I know that far better than seeing me, would be to never see me at all!

As a quick aside, it’s not all bad being one of the youngest people in the waiting room. While I was waiting for my appointment, a lovely old chap chose to sit next to me because he’d picked me out as ‘the good looking one’. Trust me, there wasn’t much competition, but it still felt good. Not sure he’ll be rushing to my side when I have no eyebrows though!

There will be a time to be strong. But, for now, I’m just going to sit on the sofa, drink tea and work up the courage to take my next injection. Wish me luck. 

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 32: Dust off your satchel, you’re going back to class!

With the volume of tests, examinations and terms to commit to memory on a daily basis, you could be forgiven for thinking you signed up to a course – not a course of treatments – on diagnosis day! Cancer, do you really need your own curriculum? And, do we all have to be graded?

Breast cancer is the biggest module you’ll ever take – and not one any of us would wish to retake or even fail. For starters, it has its own language. You may not have to get the grammar – and you’ll be forgiven for misplaced capitalization – but once ‘benign’ becomes ‘malignant’, it’s best to reach for the dictionary – and fast.

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First there are words that cancer has deemed appropriate to rename. I think armpit is a fairly straightforward word, but cancer thinks it should be something a bit more technical. Enter ‘axilla’! Having been acquainted with my lymph nodes for the first time, it didn’t take long to work out that they are also referred to as lymph glands or axillary nodes (when under the armpit). Why opt for one term, when three will do! And, did you know, far from just having a boob job with tummy tuck and node removal, I actually had a mastectomy with removal of the areola followed by a deep inferior epigastric perforator flap with axillary clearance? Put like that, I am exhausted just saying it, let alone recovering from it!

But, that’s not all. Once you get over the fact things have three names and that once you become familiar with your armpit, it becomes something else, stage 2 of the cancer curriculum gets thrown in. And, by stage 2, I mean acronyms. Navigate the CT, choose between the WLE and the MX and then you get to find out your ER status and whether or not you are HER2 positive (all of which is discussed at length at an MDM). That’s before you get inducted in the language of chemo (FEC, FEC-T, CMF and AC anyone?). My absolute favourite so far: FISH. Don’t be fooled into thinking it has scales and eyes. FISH actually means ‘Florescence in situ hybridization’, which is a way of measuring HER2 levels in cancer cells. Not tasty, and certainly wouldn’t go well with lemon.

Armed with my Breast Cancer Care glossary (thank you so much for creating this superb revision guide), I am transported back to the days of French A-level revision (although without the lovely nightly walks with my parents throwing around vocab). I have always liked vocab tests and like to think of myself as a cancer codebreaker. But, when it feels like you’re being home-tutored in a class of one, and you want more than anything to pass with flying colours, the pressure really is on!

Breast cancer has its very own secret after-school club. And, if you know your MDM from your MX and your DX, then you’re in (whether you like it or not). You often won’t be able to spot a breast cancer patient, but just know that there are people all over the world with new boobs (or adjusted ones) all trying to revise harder than they ever have before.

This time, it’s not about getting top grades (nobody wants a high grade cancer). It’s not about getting a certificate and a gold star (although I wouldn’t say no). This time, the reward is life – something definitely worth dusting off the satchel for!

Breast cancer lesson number 31: What you lose in dignity you gain in confidence

I lost my dignity somewhere between getting drawn on by a surgeon with a giant marker pen (in front of another surgeon and my parents) and having an unexpected internal scan at my first fertility appointment. That’s not to say that my amazing hospital doesn’t go to great lengths to protect it with their well-placed gowns and paper towels. But, when you’re picking out your clothes based on what gives people ‘easy access’ you know it’s pretty much gone – and the chances of recovering it are very slim (I appreciate that may make me sound a little bit like a loose woman. But, trust me, it’s all in a good cause!)

Surprising as it may be to hear, I don’t want it back. In its place, the hospital has inadvertently given me something so much more important: a massive dose of body confidence. That’s not to say that I have a burning desire to take my top off or wear more revealing clothes (I don’t think the world would ever be ready for that). But, by encouraging me to undress at pretty much every appointment (sometimes just out of pure curiosity and kindness), I have realised for the first time that I’m happy with my lot.

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It may sound strange coming from someone with a large scar down her hip (and four giant metal pins inside), a scar on her neck from a old birthmark, a walk that looks like it belongs on the comedy circuit, an amputated boob (and a new imitation one without a nipple currently), straw-like hair, a scar the length of my tummy and so-called ‘child-bearing’ hips. But, every time I look in the mirror now as I massage my modifications and wash my hair, I don’t see my flaws. I just see strength.

I know I’ll never be stopped in the street or take someone’s breathe away with just one look. I know that I’ll never be able to wear short skirts and look good in a pair of shorts. I also know that when fully clothed I am just another plain Jane on a commuter train. But, what makes me smile is that, beneath the pink cardigans and the navy dresses, I am a warrior. And, if you asked me to choose, I wouldn’t change a thing (beyond getting a serious illness in the first place of course). After all, if the world wanted us all to be beautiful, it wouldn’t have invented mascara! And, I love mascara!

Beauty isn’t about having good skin, it’s about being comfortable with what you have and accepting who you are. You’ll find there’s a cream for everything else.

So, I challenge you to stand in front of the mirror this weekend and smile. Smile at the good bits (I am positive you all have something about which you are particularly proud. For me, I have always liked my eyes and my shoulders). Then, most importantly, smile at the bits that make you who you are (the childhood scar you’d wouldn’t have had if you’d listened to your parents, the finger nail that just doesn’t grow the way you want, the knee that hurts, the big toe that you always bury in thick socks).

Smile because you’re you. I wouldn’t have you any other way!

NB: if you’d like to find out more about scarring and breast reconstruction (with DIEP), head to lesson number 21.