Breast cancer lesson 160: Welcome in the next decade with a glass of water and a Tamoxifen tablet

I find it mildly amusing that my first day back at work (after about four months away) should also be the day I am prescribed my hormone therapy tablet Tamoxifen. (It’s also the first day of Breast Cancer Awareness month, which is obviously an amazing thing with which I hope to be heavily involved for the rest of my life.)

For me, this October feels like my January, armed as I am with my freshly-organised work bags and clean notebook. I am more ready than ever to move forward, but I am now in possession of a packet of pills that, I hope very much, won’t pull me straight back. I guess I just hoped, for a few days at least, people might be more interested in what is going on inside my head – rather than growing out of it!

Of course, no office commute would be complete without that obligatory detour to the hospital. As some of you will remember, just over two weeks ago, I was sent on my merry way after radiotherapy with a list of potential side effects, advice to keep ‘creaming’ and a note of caution that, at some point in the very near future, I may hit some kind of cancer-related wall. I am delighted to report that the skin is happy, the tiredness is manageable and the wall is (currently) nowhere to be seen. It was, however, nice to speak to an oncologist today to get a little bit of reassurance that things are as good as can be and that, on the radiotherapy front at least, I did very well.

We did discuss the peripheral neuropathy and, as I feared, time is the only current healer on that score. Nerve damage can take years to disappear, and, given that I have only been chemo-free for two months, there is no current action to be taken. We also talked periods and menopausal symptoms. It seems that, because Zoladex interferes with the pituitary gland, it takes a while for the body to reactivate. If, at my follow-up appointment in three months, the ovaries are still asleep, they may do a simple blood test to assess my fertility levels. But, again, it seems time is the biggest factor here as well. Thank goodness I am trying to be more patient in this new post-cancer era.

Then, Tamoxifen had its moment. The oncologist explained that the hormone therapy (which blocks oestrogen to the breast tissue in pre-menopausal women) was another treatment designed to reduce the risk of the cancer coming back. We didn’t talk stats. He was straightforward in saying that, when it comes to breast cancer, it is the individual case that matters and they have no idea whether or not, in my particular case, the cancer will ever return. The only thing they know is that, because my cancer was oestrogen positive (basically fed by the stuff), Tamoxifen will help on the risk front. And, if it helps, I’m taking it!

Up until very recently, the standard course for hormone treatment was five years. Based on the results of a study (the findings for which are starting to filter through), however, the plan is to keep me on Tamoxifen for ten years. He did add though that, while beneficial to complete the term, we could have a debate after five years if my quality of life looks to be suffering as a result of the treatment. Let’s hope the next five years are kind so there is no need for a debate of any sort.

Whether or not Tamoxifen will bring with it any nasty side effects is yet to be seen (more menopausal symptoms, irregular periods, risk of blood clots, changes to the lining of the uterus are all on the list and there is even a risk of more cancer, but that risk is pretty low). There are, however, a few things I have learned that I think will be useful for others to hear too:

1) Because I shut my ovaries down using a Zoladex implant during chemo, my body currently doesn’t have normal levels of oestrogen in it. This means that, for a time, my body may not notice anything unusual with taking the drug. When my body starts to return to normal (and periods start), however, there is a chance the side effects may start (or get worse). That’s certainly something to look forward to.
2) In terms of the best time of day to take the pill, the official advice is simply ‘when you think you will remember it’. That means before bed for me.
3) Missing a day or two is not going to have a real impact on the overall effect of the drug.
4) There are certain foods and drugs that may affect enzymes in the liver (where Tamoxifen is metabolised), but as long as you aren’t doing anything extreme on a daily basis (such as consuming a litre of grapefruit juice a day) and are enjoying a healthy balanced diet, he didn’t seem to think there was any reason to cut things out completely. Always good to check, but I haven’t got a list of banned foods in my pocket and that is good enough for me.
5) On the subject of follow-ups, I will be seen again in three months to talk about the drug. All being well, I will then be put into a long-term follow-up clinic. No amount of medical software can predict the future, so it’s a case of watch, hope and live. Whether it will be mammogram or MRI scanning, is yet to be seen. He said, given my age, MRIs may be recommended, but only time (yes that magical thing again) will tell.

Breast Cancer Care has produced a really useful booklet on the subject, which is worth ordering if you’re keen to know more. It has a useful section, which talks about the different suppliers who make the drug and how the brands may affect you in terms of the side effects you experience.

Funnily enough, while I knew we’d talk about Tamoxifen today, I had no idea I would actually get a pack (in the case of clonidine, I had to go to the doctors to set up a repeat prescription first). I would be lying if I said I wasn’t a little nervous about taking it. The side effects can be brutal and, unlike all my other treatments, 10 years is a long while to feel uncomfortable. The only good thing? I feel like, by starting the course, I will be doing something every day to keep cancer at bay. That is certainly something worth smiling about.

So as you get into your PJs tonight, think of me with my brand new pill packet marking the start of my next decade.

Let’s hope it’s a good one!

Breast cancer lesson 159: Choose to thrive not just ‘survive’ after breast cancer

Before swallowing a textbook on all things breast cancer, I thought that if you were treated successfully, you could be cured. I thought that at the end of my active treatment journey, I, too, would be another woman in ‘remission’. Like a lot of things in the English language, however, nothing is quite as simple as it first appears.

Truth is, while the headlines will talk of ‘cures’ and people being ‘all clear’, you are not likely to hear these terms in an oncologist’s office. To be cured means there is no way breast cancer will come back. Unlike some other cancers, breast cancer can come back at any time in the future. Yes, the risk of it returning does diminish over time and yes, I may be cured, but as there is absolutely no guarantee, it is not a word you will ever hear me use.

Remission is also a word that won’t me making an appearance in my post-treatment life. While associated with lots of cancers, it isn’t often applied to breast cancer. Instead, people tend to use the term NED, which is short for ‘no evidence of disease’. As someone who loves a good bit of evidence-based thinking, if the evidence isn’t there, I plan to live my life without a cancerous backdrop. I will pop a pill every day (when they prescribe it to me) for the next ten years and will remember just how far I’ve come and how lucky I am, but I won’t let it control me (let’s hope the side effects are kind). I do not fear the future. I say, bring it on!

People ask me, do I think it will come back? In all honesty, I have no idea. (I didn’t think I’d get it in the first place.) All I know is, if it does come back, it doesn’t mean the end of the story.

Some people may get a local recurrence, which means the cancer has returned to the chest/breast area of the affected side. Local recurrence is treatable.

Some people may get a regional recurrence, which means the cancer has spread past the breast and the armpit lymph nodes into tissues and other lymph nodes. Regional recurrence is treatable.

Some people may get a new primary diagnosis in the opposite breast. This would be treated as a new cancer, and is treatable.

Some people may get secondary cancer, which is when the breast cancer cells spread beyond the breast to a distant part of the body (such as bones, liver and lungs). Secondaries can be controlled and treated, but will never go away.

And, some people shut the door on cancer forever. Let’s hope I fall into this rather exciting category.

My plan? Be breast aware (I have signed up to CoppaFeel’s free monthly texts), exercise more (the link between exercise and cancer is indisputable), never reschedule a hospital appointment again (I moved my biopsy because I had a meeting) and squeeze out every last little drop of happiness from every day for the rest of my life. Then, if I ever have to hear those words again, I will be ready.

As I write this today, I am not just NED, however. Cancer has changed me – and I don’t just mean my hairstyle. So much so that I have established my own set of life guidelines, or commandments. These are the things I want to remember as life returns to its new version of normal. This may sound a little odd, but by posting them here, I hope I will always be reminded of the things that matter, when first world problems creep back in. Here goes:

1) Be true to myself – and be myself: We often spend a lot of time trying to disguise the things that make us who we are. Yes, I like the X Factor and cake and yes, I will probably never enjoy an intensely political debate, but that’s because I’m me, not someone else. I vow to celebrate my own likes and dislikes – and the preferences of others.

2) Run my own race: I must set the pace in my own life and compete only with myself.

3) Worry when it matters – and let it go: If I can do something to eliminate a problem, I will. If I can’t, worrying about it won’t make a difference. This is going to be tough.

4) Be present and enjoy the process: No more wishing my life away. Today is all we know we have. I want to enjoy it – and reflect on it.

5) Be patient: Sometimes the best course (and often the hardest course) of action is to let things happen and not force an issue. I vow to walk before I try to run.

6) Just do it (no excuses): I have a mug that says: ‘don’t put off to tomorrow something you can put off for life’. I am a master procrastinator at times and I want to make every moment count. Start the day with the hardest job and it will get easier. And, good and done is better than perfect and not done.

7) Put your oxygen mask on first: You are not qualified to help others unless you first help yourself. I promise to look after myself properly. That includes putting on more face cream!

8) Use it – and enjoy it: How many of your possessions are reserved for best? No more. I intend to make the most of what I own. Otherwise, why own it?

9) Live to give: I promise to be kind and be grateful.

10) Find a place for everything: You can be tidier if your belongings have a home that isn’t the kitchen table!

11) Fix it – identify that problem: No more generalising for me. If the skin is burnt, it doesn’t mean the meal is ruined (metaphorically speaking).

12) Do the right thing: Apply this filter to every decision and I believe I will be a better person.

13) Exercise restraint: I want to be strong enough to buy a bar of chocolate and eat only a few squares (provided I am not hungry of course).

14) Be reliable: I will keep my promises – and make more promises.

15) Be prepared: I won’t cook without an apron and bake in my running kit again!

16) Remember what’s important: What would I want my gravestone to say?

17) Be aware: You won’t know whether you need to lose a few pounds unless you weigh yourself.

18) See the brighter side: Think positive and the world will fall in line.

19) Think it through: I vow to weigh up a task based on how important it is and give it the time and energy it deserves. Less is often more.

20) Dare to dream, prepare to learn: I will take risks, safe in the knowledge that all I may get to take from them is a learning.

If you were given the chance to start again (I still liken chemo to rather odd form of rebirth), what would you resolve to do – or do differently?

I want to grow back as a better version of me and thrive in this next chapter. Now you know the inner workings of my mind, you can hold me to it!

Breast cancer lesson 158: Why I will be making room for cancer in my house – if not my life

In January, I made a mistake. I donated the dressing gown I wore in hospital when I had my hip op in 2007 to charity. I hadn’t really worn it since and, as far as I was concerned, I would probably never need it again. Frustrating then, that I had to buy a new one, just a few weeks later.

I confess I am a little superstitious. I don’t buy sunglasses in the summer months for fear of rain. I hunt for a second magpie if I only see one to avoid the sorrow and, while I do step on cracks in the pavement (this is London after all) and am a bit of a magnet for ladders, you won’t find me leaving anything to chance – particularly where cancer is concerned.

This does present me with a slight challenge. What to do with the radioactive looking shower sleeve, the PICC line cover, my favourite hairloss hat (which incidentally hasn’t been on an outing since my hair has started growing back), the bed caps and, dare I say it, Suzie, my not-so-trusty wig? Do I gift them to other people waking up to face the reality of a cancer diagnosis, to help them feel supported? Or, do I tuck them away in a small corner of the house as a bit of an insurance policy? (The logic here is that, if I’m prepared, cancer won’t dare try its luck a second time). While I would like to say the former (and certainly will be posting out a few items that didn’t get too much of a look in in my cancer story, but could be useful to others) I have to say, for those frequently used items, I will be opting for the latter route. I did not go through belt and braces cancer treatment only to jinx myself by not packing away a cap or two. Sounds strange for a rational woman to admit (I appreciate some may question this), but while I have changed a lot over these last nine months, this is not a part of myself I have chosen to reprogramme just yet.

So, that’s why I have decided to create a cancer capsule (a bit like a time capsule). In my mind, it is currently a shoe box stuffed with practical items I would never want to rebuy. But, who knows, it could turn into a pink box file or a plastic box if my creativity takes hold. The most important thing is that it is a box I can seal, hide in the cellar and bury in the back of my mind in the hope that one day I will open it again just to relive the fact that I kicked cancer into touch.

People have asked whether I am worried about the possibility of it returning. And, my answer is, right now, I’m not. I am sure my body will give me a few things to wobble about in the future that will send all the memories flooding back. But, there is a reason I haven’t been playing the numbers game and talking hard stats with my oncologist. I was a statistical anomaly in the first place, so why should I obsess about numbers, when they haven’t been reliable before? I spent one evening months ago using online prognosis tools and, given, they are so outdated and based on patients decades ago, I scared myself silly and won’t be doing that again. All I know is, I have done everything I can to remove cancer from my body, so I am not going to let it dictate my life. If it comes back, I will face if once more (don’t get me wrong, I would be pretty unimpressed). But, I am going to make the most of this little life of mine and celebrate the signs of aging (all except the menopause). I am just happy to be here.

So what will be tucked inside my capsule? In addition to the hats, I plan to pack away the information booklets and the names of the tablets that got my through. But, I also want to add the amazing cards I received (I read them all last week and can’t explain how much they made me smile) and my running medals, so that, if one day, I have to open it again with tears in my eyes, I will be reminded of both the support I had and the strength I found. I will smile once more through the dark times.

So, take this as my insurance policy post. My declaration of readiness and my commitment to making the most of my life, safe in the knowledge, there is a little piece of me waiting to be this strong again, should I ever need to be. Let’s all just hope I don’t.

If only getting real insurance was as easy!

Breast cancer lesson 157: It takes time to heal

I have lost a nail. Now, if this had been as a result of an ill-timed run up the stairs or poor football move, it wouldn’t exactly be headline news. But, given this is the first chemo nail to fall (a toenail thankfully), it is a moment I feel I have to acknowledge.

2014-09-20 09.04.05

It’s five days on from the end of active treatment and I feel I having been making good ‘moving forward’ progress. The cards are down (although Duncan now thinks the living room is so bare it looks like we are moving out not just on)! The house is so clean you could eat a meal off the floor (not something I am going to test mind you). And, I feel fitter, healthier and a little bit hairier.

The nail incident, however small it may seem, is a sign though that cancer (or more specifically its treatment) isn’t quite done with me yet!

It does feel a little mean that you can often start looking a little worse for wear when you’re not actually being treated. I am currently on ‘boob watch’ to see whether the radiotherapy is going to do any real damage to my skin (it is just a bit red and angry at the moment). I still can’t sleep properly. The menopause is still in control of my body. My hands and feet still feel a little disconnected. And now, it seems, I am also on ‘nail watch’ (which currently involves tapping and fiddling with my nails every five minutes to see if anything else drops off). At least my hair has a thin covering of hair to keep me distracted.

The thing is, to a cancer patient, nothing about the above is particularly unusual. We understand the side effects will last for a while (and signed a form to let them). We know that underneath the smiles and the ‘back to normal’ activities we may have to cope with pains and twinges. We know it will take time for us to trust our bodies to know a cold is just a cold and a cough is just a cough. We know our lives, while brighter and enriched in many ways, will never quite be the same again.

Today, it was just a nail. Tomorrow, it may be something else.

One day, I will want to forget. For now, I need to remember, so I can give my body the attention, the tools and the time it needs to heal.

I hope you’ll give me time too.

Breast cancer lesson 152: Ten post-treatment ‘firsts’ guaranteed to raise a smile

When I experienced my first proper shower post PICC line removal (no radioactive-looking arm sleeve in sight) and actually tasted my first glass of red since chemo, I started to see just how amazing some of life’s simple pleasures can be when you’ve been deprived of them for a while.

Now I am not saying I will be jumping for the joy at the sight of a shower for the rest of my life – although I do really like a good shower. But, I know that first proper shower is just one of many ‘firsts’ I get to enjoy now that treatment is coming to an end. It may sound strange, but I feel blessed in many ways that have the opportunity to rediscover certain aspects of life that I just assumed I’d take for granted forever.

So here’s my post-cancer list of ten things I cannot wait to experience once more!

The first shampoo: None of this scalp massaging stuff with a bar of hard soap, I am talking a proper lather on proper hair, which needs a lot of washing out! Showers are just too short at the moment and I have nowhere to put my conditioner!

The first brush: When I had hair so long I could sit on it (admittedly only if I leaned my head back), I used to love having other people brush my hair (this was a long time ago). Apparently, 100 strokes make it lovely and glossy (and maybe a bit greasy from all that brushing). There is nothing quite like the feeling of a brush gliding through your hair (or not if your hair is in knots). I love it and I miss it. In fact, the only thing I don’t miss is having to carry one around. Rumour has it my hair may grow back thicker. I am certainly hoping not as it ressembled rope before it fell out.

The first haircut: Ok, bear with me, these aren’t all hair related. Oh, how wonderful it will be to sink into the hairdresser’s chair and ask for someone to actually style my fluff! I will take a lifetime of ‘bed hair’ moments just to be able to look in the mirror and have a say in what is going on up top! It seems my ‘bob’ cut of the last four years is out if your emails and messages are anything to go by!

The first swim: This won’t just be any swim. When I get the all clear from my radio treatment (they suggest about six weeks from the last blast to make sure your skin doesn’t have a reaction to the chemicals in the pool), I will be dipping a toe into the Olympic pool. I think my days in open water might be numbered, but I can’t wait to feel my arms move through the water. It will be another tick on the Brighter Life List too!

The first period: Not something I thought would ever make it onto a list of things I actually want to see, but when you haven’t had one since March and, having one means you are not condemned to an eternal menopause (trust me, you wouldn’t want that), it will actually be a great day ‘if’ or ‘when’ it arrives. Sadly, this is the only thing I know may never return. I’d like to think I’d be more prepared for this first period than the last (was very young and walking round Avebury with my family so not great timing). But, I guess it will be as unexpected.

The first appointment-free month: Having spent the best part of the last month in hospital, I must confess, I am a little over appointments. I have three check-ups scheduled for October (including a trip to the hip surgeon and a discussion about nipples, which should be interesting), so am thinking November could be my month. My diary will look empty for once!

The first day you no longer look like a cancer patient: While I do find the ‘leaving the house’ routine easy at the moment, it would be wonderful to sit on a train and not see pity/sympathy/empathy/sadness/[insert appropriate emotion here] in the eyes of fellow passengers. Even in London, I don’t feel I have as many opportunities to blend in to the background at will. I’m happy, but that isn’t something you can announce to passengers daily, so they smile along rather than assuming my life is falling apart. Also, cancer is cruel in that you often look worse when the treatment is over – just at the time everyone just wants things to get back to normal. I’d like to look in the mirror to apply cream, not have a reminder of the last nine months.

The first mascara-wearing day: Now, I am not a great wearer of make-up as readers of this blog will no doubt know. But, I love mascara. Midnight blue is my favourite and I do often feel a bit naked without it (of course, that was before I discovered how naked you feel without eyelashes). I don’t change it as often as they say, but I might just treat myself to a new one when the lashes start to come back. Here’s hoping that isn’t too long!

The first proper lie-in: those menopausal symptoms are persistent. So much so that the hot flushes (combined with peripheral neuropathy from Tax) still mean bed is not something to be treasured just yet. The more I sleep, the worse the neuropathy is. Providing Tamoxifen doesn’t keep those menopausal symptoms going for the next decade (and providing my nerve endings start to play ball once more) I’d like to think might get a lie-in sometime before Christmas!

The first drug-free day: Given I am still on Clonidine and will be by the time the Tamoxifen starts, this day is a long way off. I will be 42 (at the earliest if we take a baby break in five years or so), so that is a good ten years of pill popping to go. But, what a day that will be! I won’t be wishing my life away just yet, but I will be happy giving my body a break from all things toxic. Maybe though it will be like dying your hair. It will be so long since my body has experienced a life without pills, it won’t know what normal really is any more. Here’s hoping coming off it doesn’t mean I go straight into a natural menopause!

Yes, the future may be filled with uncertainty. Yes, it will take me a long time to trust my body again – although I still believe it wanted me to find that lump on Christmas Eve before it was too late. But, whatever big things await me, I can be certain of one thing – there are plenty of little things that will keep me from thinking about it.

Now, the question is, what ‘first’ will come first? I am betting on the shampoo!