Friday, 25 March 2016
Recently something very exciting happened: I won an award for my as-yet-unpublished novel A Place at Tumaini. And no, it has nothing to do with cancer. It made me realise that it is some time since I have posted here. It isn't that I haven't been writing but my life is opening up in new ways and in new directions and I'm spending time thinking and writing about other things.
So I've decided that it's time to say goodbye.
My journey with cancer isn't over. I'm still on medication and have decisions to make about my treatment. And who knows, perhaps I'll be back with fresh tears and a new diagnosis sometime in the future. But for now, cancer no longer occupies central stage.
You've been such a comfort. It made all the difference to be able to pour out my thoughts and share them with others who really understood what I was going through. I've had over 20,000 hits from all over the world and it's awesome to think that I have readers in places as diverse as Russia and China as well as many in both North and South America and a good selection of European countries.
I've never met my readers - I didn't tell my friends and family about you, dear blog, because I wanted to be able to write with uncompromising honesty about having cancer without worrying about the impact of my words on the people I love. Writing kept me sane and I hope that my words also brought some comfort to others going through what I have been through.
It's time to say goodbye to good old Chloe Mesanges too. It's been fun taking on another name and it was certainly liberating. I'll miss her. But it's time to start writing under my real name.
So I'm afraid I've already replaced you, dear blog, and I'm starting afresh at www.lucywelchwrites.wordpress.com. Perhaps my readers, if they have enjoyed my writing, will follow me there?
One day, you never know, my readers might even be able to buy my novel. If they do, I hope they find a lovely sunny corner somewhere and sit and read and enjoy...and forget their worries for a little while.
Goodbye, dear Diary,
Tuesday, 19 January 2016
Long ago, when I was a teenager (instead of being the mother of one), I climbed a mountain called Cat Bells. Real hikers will be laughing their woolly hiking socks off to hear Cat Bells called a 'mountain' but that's what it felt like. But the real significance of Cat Bells is that it has lots of false summits, so you'd trek your way up a steep ascent towards what seemed to be your destination - only to get there and find you had only completed another stage on the way to the real summit.
My journey through cancer feels like climbing Cat Bells.
Last August I was signed off by my Belgian doctor and moved back to the UK to plug back into the NHS. Six months later and I finally got to see a real oncologist today. There are two things I have learnt about oncology appointments.
1. Take a book to read because you will wait for at least two hours before you see anyone.
2. It will never go as you expect.
So, there I was feeling that I was sauntering up the last ascent, conquering Tamoxifen and attaining the summit. Only to be taken by the hand by my new oncologist and presented with a whole new ascent.
I'm a bit overwhelmed by new information at the moment but let me see if I can explain what I think she said.
I am onto the stage of endocrine therapy (hormone treatment). My cancer was ER+ which means that oestrogen can stimulate it to grow. But it's not clear what kind of endocrine therapy is appropriate.
If I was older (i.e. post-menopausal with already low levels of oestrogen), I could move from Tamoxifen to a more effective group of endocrine therapy drugs known as aromatase inhibitors (A.I.s) which only work when your ovaries no longer produce oestrogen.
If I was younger, with dangerously high levels of cancer-boosting oestrogen, then it would definitely be worth 'switching off' my ovaries, thus reducing my oestrogen as well as allowing me to make the move to A.I.s.
But at 45 I'm at an awkward age - just like my teenage son.
Are my oestrogen levels high enough to merit 'switching off' my ovaries? It's not an easy choice - it involves monthly injections for five years, more menopausal-type side effects plus increased chances of osteoporosis. Or should I just stick to Tamoxifen for five years until Mother Nature gets me to the point I can switch to A.I.s anyway? Research suggests that taking the A.I.s sooner is more effective but its nowhere near as clear a difference as for younger women so is it worth (as my oncologist put it) 'going for gold'?
I asked her what she would do.
She said she would try the injections for three months and see how it went. If it was awful, she'd go back to Tamoxifen. If she could tolerate the injections, she'd switch to A.I.s and take bone strengthening treatment if necessary. Think about it, she said.
As I walked home, my thoughts were as scattered as autumn leaves in a storm. On the one hand I felt like crying. All this to prevent the recurrence of a disease that might never come back anyway! Haven't I been through enough?
On the other hand, I know I fall into a higher risk group. With a 5cm lump and 3 infected lymph nodes, my cancer was only a whisker away from being classed as third stage. And to make things worse, when they removed my lymph nodes, they discovered that one had split as the cancer started to break out. I have a weird image in my head of tiny, bug eyed aliens clawing their way out of an egg-like lymph node just as the surgeon scooped them out of my body. What if some had already slipped into my system? Isn't it a good thing that there is another treatment available that might keep me safe for the future?
When I asked how much difference this would make for my age group, I expected the oncologist to say 3-4%. She didn't. She said it would make 35% difference on top of just having Tamoxifen. That sounds pretty major to me.
So I said I'd give it a go. It looks like Tamoxifen was another false summit, dear Reader. Bear with me as I start on the next ascent.
Tuesday, 1 December 2015
I was tempted to stop there. To stop blogging with my last post and its final, joyous sentence: I am rediscovering the glorious, sweet thing that is life.
Life. What a great word to end a blog about cancer. And I know how immensely fortunate I am to be here to enjoy simply being alive. But in the daily routines and requirements of post-cancer life, you can't always be savouring every moment. In fact, I read an article recently that talked about how difficult it can be for cancer survivors to deal with the pressures of life post-treatment - we are bombarded with stories about people for whom 'Cancer Changed My Life!!' and how they have gone on to live more fully than ever before.
In reality, for most of us, post-cancer life looks remarkably like pre-cancer life. The washing, ironing and cleaning still needs to be done and winter days are still wet, cold and dark. We just have to do it with short hair and scars.
Some of us may also be coping with survivors' guilt. Why did we survive when so many admirable people do not? Or else we get caught in a 'wait and see' scenario, holding off fully engaging until we can be sure that this gift of life is not simply a short respite.
But perhaps the most common feeling is that life feels just a bit...flat. As a good friend put it recently, her post-cancer life feels 'lame'. Dull. Oh my, I feel guilty just typing that. How can we complain about a dull life when we should grateful to be here at all?
This time last year I was facing a chemo-Christmas and, trust me, I am truly grateful that this year I am healthy. I never want to go back there again. And yet... When I was sick it seemed that nothing I could do was wrong, everyone thought I was so brave, so wonderful. I found that I almost had a celebrity status when I was on chemo. Now I'm just 'me' again... I am no longer a 'celebrity' and that is a good thing - but I miss being the centre of all that fuss.
My friend writes: Last year I got so many emails and letters and visits from overseas. Now the stream of attention has dried up. Not that I always want to be in the floodlights, but it was great to have so many visiting friends and conversations and deep talks about life. Compared to last year I am living in social isolation - despite the fact that I spent most of last winter on or near the couch.
Combine that with scrappy new hair, no job and a thickening waistline (thanks Tamoxifen) and perhaps it's not surprising that our self-image isn't exactly sparkling at the moment.
So where do we go from here? First of all, we DO need to remember to give thanks. It's true that's its corny and we can't be expected to live our lives feeling happy every minute just to be alive - but we ARE alive and that is a gift. Then we need to remember how strong we are. Not because we 'beat' cancer (that's just luck) but because we fought it. We lived through FEC and wigs and vomiting and scabby nails (or equivalents) and kept going. We are still amazing - even if we can't expect to have cheerleaders around us telling us so any more.
And then we need to go forward. Life post-cancer is still going to have grey days just as it did pre-cancer and that's ok. We're allowed to have downs as well as ups just like everyone else. But now we have experience of our deepest selves in the hardest of times and have learnt how to draw strength when we really need it. The truth is that 'beating' cancer doesn't change anyone's life. It just helps us realise how amazing we all can be.
Sunday, 1 November 2015
It's sixteen months since I heard the words, 'They found cancer cells.'
Sixteen months of treatment that turned my life upside down. Of misery and exhaustion and fear...and intense love from my family and wonderful friends and a rediscovery of the sweetness of life.
For a long time after my first ever post, when my terrified fingers typed cancercancercancer, this terrible C word became the focal point of my life. You can see it on my blog where I posted every few days, first of all about my own first faltering steps through treatment, then later about the wider world of new cancer treatments and the psychology of dealing with a cancer diagnosis.
Sixteen months on and the cancer still looms huge in my life. This is no common cold that will pass! I remember every time I run my hands through my hair, when I reach for my bra, when I exercise, when I look on Facebook and see posts from others travelling the same path. But it is no long the hub on which my life turns. I can see that it is weeks since I last posted and that's because I have been busy living: settling my family into our new home, writing stories instead of cancer blogs, creating a new website about me as an author not a cancer blogger, meeting new people who have no idea that cancer ever touched my life and think I just like to wear my hair this weird way...
It's not as if there aren't plenty of things to blog about. It seems that the terrible, wonderful world of cancer is almost always in the news these days and many of these stories are inspiring and full of hope. A new blood test that can detect cancer and pinpoint the affected organ from just a single drop! New technology that can use fat cells to can carry a 'heat activated grenade' to the site of a tumour and explode the cancer cells without killing healthy cells! Glamorous ladies posing topless in the Sun post-mastectomy!
There are stories to chill me too. A good friend has discovered that the breast cancer is back for a third time, this time in her bones. She is facing life with a chronic disease. But she is still facing life.
I am still afraid, fear still lurks in the 4am shadows when I mentally check my body and wonder, wonder, wonder...is there something malevolent brewing somewhere inside me? I know it could still take my life. But I am also realising with a sense of wonder that even if I do have to face the devil called Cancer a second time, it does not have to mean the end...maybe not even the suffering that a cancer diagnosis means in terms of treatment in today's world. The scientists are bounding forward like knights clad in white coats against the dragon called Cancer!
Meanwhile my hair grows. My world, which shrank so small during the cancer months, expands again and flows over the old, pre-cancer boundaries. Dear friends, I neglect my blog. I am rediscovering the glorious, sweet thing that is life.
Friday, 9 October 2015
If you've been following my blog you'll see that I've changed my profile pic to the poster produced by the fabulous ladies at Flat Friends: an online group of UK based ladies who have decided against reconstruction after breast cancer took one or both breasts. I'm proud to be on there with such a lovely looking lot of ladies.
Hopefully campaigns such as these will help women (and men...let's not forget that they get breast cancer too) to remember to check themselves in Pinktober and beyond and thus save some lives and some breasts too. There is, however, quite a bit of grumpiness about Pinktober on the cancer blogosphere. Survivors worry that all that pink fluffiness trivialises breast cancer or, even worse, makes it seem like a 'good' cancer. There's a lovely quote I found somewhere (sorry, can't remember the source) that 'breast cancer is about vomit and finger nails dropping off. It isn't pink and pretty.'
That's certainly true. And some campaigns, like the M&S 'show your strap' campaign, are rather insensitive given that many of us don't have breasts to put in a pretty bra any more. They have missed a trick, I think, by failing to provide more post-surgery and mastectomy lingerie options in the range that they are advertising alongside the campaign. On the other hand, what a good job it's done on getting the message out there about breast cancer!
I'm looking for a job at the moment and one position I considered was working with a charity that raises awareness of CMV. Do you know what CMV is? No, nor did I. You will probably be as shocked as I was to learn that it is one of the main causes of children being born with permanent disability, more common than Down's syndrome, Spina Bifida or Cystic Fibrosis. Simple improvements in hygiene like regular hand washing can prevent CMV and yet most pregnant women never have heard of it. Think how happy that charity would be to land a campaign like the M&S 'show your strap' campaign. So I think we survivors of breast cancer should not be too quick to criticise well meaning awareness campaigns even if they are sometimes rather pink and fluffy. Let's just get the message out.
And while we're about it, let's be a little sensitive about the message we get out there. Let's face it: we've been through a lot. Vomit, finger nails falling off, scars and all the rest. We might not want to sugar coat it, to let the world think it's 'just' breast cancer, but on the other hand spare a thought for the women flicking through magazines as they wait to see the doctor about the suspect results of their first mammogram. Let's not terrify them. Yes, breast cancer takes lives, it takes breasts and it takes months of horrible treatments. But most of us do get through it, often stronger than we were before, and focusing on the negatives is a worse than making a first-time pregnant woman listen to endless horrific birth stories.
That's why I love this Flat Friends poster. Look at us! We've all lost one or both of our breasts and we're not hiding that tough reality. And yet, aren't we beautiful and smiley?
Pinktober can be a difficult time for those of us affected by breast cancer. By all means, let's make sure that the glossy world of celebrities doesn't water down the message. But let's not go to the other extreme either.
Most of all, let's remember that all that really matters is getting the life saving message out there - whether you agree with Pinktober and the silly campaigns that run at this time of year or not, at least it's all publicity. I wonder how many more women have finally booked in that mammo as a result of all the buzz on social media? So pass it on: nag your friends to check their breasts! And while you're at it, tell your pregnant friends to wash their hands regularly.
Friday, 25 September 2015
How often have you seen reports of people who 'lost their fight against Cancer?'
We naturally turn to battle language when we talk about Cancer and it can be a positive message of defiance. When I started my treatment, I saw myself as a warrior strapping on armour ready for a fight - this mental attitude gave me the determination I needed to push back depression and start chemo with all guns blazing (so to speak).
But battle language can also be hurtful. If the cancer spreads, if the diagnosis is terminal, then we should not talk about people 'losing' as if they somehow didn't fight hard enough. There are many tales of people who faced terminal cancer with extraordinary courage and strength: they are inspirations and not, in any sense, 'losers'. So should we abandon the metaphor of cancer as a battle?
Perhaps our mistake is not that we instinctively use the language of war, but that we misinterpret our role in the battle.
After all, the 'fight against cancer' is not a war against an alien enemy. It's more like a civil war; the body turns against itself. The cancer cells are our own cells which turn upon their neighbours. In a sense we are on both sides in this war, divided like a mother with sons who fight on opposing sides of a civil war.
And any war is not a simple matter of two opposing armies. It's a complex web that sucks in everyone it touches. Some of the most inspirational characters from the history of war never touched a weapon and yet we still think of them as fighting in their own way.
How many of us can name the military leaders in the Crimean War? But we all remember Florence Nightingale. And there are children who attained greatness in times of war too, think of Anne Frank. Many others never made it to the front line but were celebrated in their communities for their bravery, in battle, such as those who drove ambulances through the Blitz. Ordinary people who coped with the horrors of war with courage and dignity; protected their loved ones, put out fires, tended the wounded, did whatever it took to keep life going through the chaos. And when they could, they still got dressed up and went dancing.
Some of them ended up as casualties of war. But their examples still inspire us, long afterwards, and we would never say that they had 'lost'. They are our heroes.
Seen this way, we are not the soldiers in the war against cancer. We have doctors and nurses, armed with an array of chemical weapons, to fight the battle for us. And, thanks to the armoury of modern medicine, many of us will survive, even though we may emerge bearing scars.
We are not the soldiers, we are the ordinary people, thrown into the chaos of a war we did not want.
So let us live as well as we can through the terrors of battle. Love and protect those close to us. Reach out to help others. Be brave and fight with every means we have: even if that simply means fighting to stay positive in the face of a terminal diagnosis.
If we live with courage, even if some of us become casualties of war, no-one can say that we have lost. Our lives will shine on after we are gone. We will be heroes.
Tuesday, 22 September 2015
Moving house is never easy. Endless boxes to unpack and all those practicalities to sort out: schools, furniture, utilities and the all important internet access... And cancer adds a whole new dimension.
Luckily I'd finished my active treatment by the time we moved back from Brussels to our old London home this summer. I'd even had time to squeeze in my three month check up with my Belgian oncologist and, despite a scary mammogram experience, he gave me the all clear in July.
So when we arrived home after seven years overseas, sorting out my cancer treatment was just another thing to do on a long list that started with settling the kids in their new life. Once school started, I had time for the necessary GP visits to get re-registered and find out how to get top ups of Tamoxifen, and then I was referred to St George's in Tooting which has a reputation as one of the best cancer hospitals in the country. My appointment came through quickly and I left the half-unpacked boxes in our chaotic house to find my way to the charmingly named Rose Centre, negotiating unfamiliar public transport and following Google Maps from the station.
I found my way with only a flash of nostalgia for my old journey to St Luc's which I could have done in my sleep by the time I'd finished treatment. I even felt a little smug as I signed in. The waiting room was full of ladies with full heads of hair and anxious expressions - there for a first mammo. Not me. I was glad that I wasn't at the beginning of my journey with mammograms, dodgy results and months of chemo ahead of me. All I needed was to meet my new oncologist to find out how he wanted to keep an eye on me. Easy.
But things never run smoothly where cancer is concerned, do they?
I wasn't worried when my he decided that I'd better have another mammo on my remaining breast, just to be safe. But I wasn't at all prepared for the news that the radiologist was concerned by calcification and that she recommended a biopsy. Biopsy? You've got to be kidding!
So there I was, in a crowded waiting room, desperately attempting to translate the medical French used in my last Belgian mammo report to see if that offered reassurance. Sure enough, it did refer to calcifications which my Belgian radiologist had dismissed once they'd done an ultrasound and that was enough to persuade my new oncologist to wait until the images of my earlier mammo arrive from Brussels before deciding whether I need a biopsy.
Meanwhile, I'm back in that waiting game. It's not exactly the new start I was anticipating.
New starts can be exciting, especially if they let you leave your old, sick self behind and re-invent yourself. But they can also be unsettling if you discover that the old, sick self has followed you to your new home and your old networks have not. The wonderful circle of ladies who supported me through the last round are now on the other side of the channel. I'm meeting new people who seem very nice but we haven't exactly progressed beyond the 'My name's Chloe and I've got two children' stage of things. It seems a bit soon to dump a 'I've just finished chemo and radiotherapy for cancer and now I'm scared that I've got another lump, can I cry on your shoulder if I need to and will you bring me and my family lasagna when I can't get out bed??'
It is, in any case, weird meeting new people with my new, short, curly black hair. Don't get me wrong: any hair is good after all those bald months. But short, black and curly? I've always been longish, blond and straight... I guess it looks okay (once I've done what I can to flatten the curls so it doesn't look like a granny perm) but it doesn't really feel like Me. But this is the new Me that my new friends will know from now on. After everything that's happened, I'm not sure how well even I know this new Me yet. I guess she's changed a bit from the pre-Cancer Me but she hasn't really had time to work out where she lives yet, so figuring out her head is still on the To Do List.
So here she is, the new Me, unpacking, sorting and supporting the family through the early days of resettling, working through To Do Lists, sticking down her wilder curls and plastering on a smile, meeting new people at coffee mornings and chit-chatting without ever admitting to the fear that lurks beneath the surface.
Moving house is never easy... And can we ever really leave our shadows behind?