Every day I wake up wishing I could be facing a different reality. Some mornings I get half way to the bathroom before I remember. Most days it hits me immediately, and I reach to feel Genghis and check that it hasn’t magically shrunk overnight or, worse still, grown. The reconnection to the reality of my situation is often the worst moment of the day.
However my situation has also brought some much happier reconnections. Through the wonders of social media, word of mouth and other mysterious pathways, people who I have lost touch with for various reasons have come back into my life. I don’t think there is a phase in my life that hasn’t been represented – St Martins (infant school), Habs (junior/senior school), Brasenose (university), OILP (law school), my stage in Brussels, my time in Seville, my time in Madrid, and each of my previous law firms (Linklaters and Lawrence Graham). Sure, some of the connections are being remade very tentatively, some were never entirely lost, and some are limited to brief Facebook contact. But there are some that have been properly reignited (I think and hope). Twice this week I have spent some really lovely time in particular with people I thought had left my life. One – an old work friend – felt as comfortable as if we had seen each other only a few weeks ago. We gossiped and laughed and whinged like we did in the earliest days of our working lives. The other – also work related – was truly delightful and gave me the chance to say something that I have wanted to say for several years and so to put to rest an old worry. And there have been lots of other lovely catch ups too.
In a couple of days I will be back in the Big White Chair. Knowing that the drugs are working means that I am able to dig deep and face it, but I won’t deny that I am dreading it. To help deal with the dread I am scheduling more reconnections for the days following. Old school friends are popping in for a cuppa. Many of these girls I won’t have seen for 20 years. It’s funny – I’m sure that 20 years ago I couldn’t have imagined I would be reconnecting with them. For much of my time at school, I didn’t have many close friends there. Most of my close bonds were outside school. Many of my school friendships didn’t go that deep and it was only really when I got to university that I truly formed a proper circle of life long friends (my dearest and oldest friend Hannah is the exception as we have been besties since the age of 11). School wasn’t an easy place for me socially and I never felt all that sure who my friends were. So it’s funny – but very nice – 20 years on to reconnect with some of the girls as adults. Teenage angst is long in the past and these women have reached out with sympathy and love. It means so much, not only to me now but to the vestiges of the teenage me, the awkward me, the me who had yet to work out who I was (that happened at Oxford – which is no doubt why I look back on my 3 years at college as the best time ever). I am truly looking forward to renewing these connections and to remaking friends – but this time as adults. Reconnecting is enriching me in all sorts of ways.
Life is too weird. I’ve only just posted my previous entry. One of my school friends who I mentioned messaged me to say she lives on the same road as one of the work friends I mentioned. No way!!!!
I’m feeling desperately out of sorts this morning – I can’t tell if it’s physical or emotional or both. I have a very anxious feeling in me, yet I feel exhausted at the same time. The logical side of me says that it is a combination of having overdone it yesterday with visitors mixed with cabin fever as I’ve not left the house for three days. The illogical side of me doesn’t care what it is – I just feel grrrrrrrrrrrrrrrrrrrrrrrrrrrrr. There are all sorts of things going on in my head at the moment, but the biggest noise is the one that shouts I HATE THIS I HATE THIS I HATE THIS. I hate feeling so weary. I want my life back. I want to be me again. I want everything to go back to normal. I have a sort of pent up rage in me, but it’s a weary rage, one that I don’t have much energy to do anything with.
So being the sensible person that I am, I am resorting to deep breathing, resting and trying to get on with a bit of work to take my mind of the boredom and the million and one random things whirling about in my head. And I am here, on my blog, letting it out, writing it down, to see if that makes me feel any better. As I write, I gain a little focus. I examine my thoughts and can order them a little better. I can identify some of the things that are making me anxious – concern about a friend; anticipation of visitors later; a feeling that work is piling up; revisiting a conversation from a few days ago that gave me some angst – and so on. When I’m tired, all of these things get mixed up together, like they are in a blender, and all I can see is the whirling swirling morass of things that need my attention. I need to take a breath, to slow down, to deal with each issue on its own. I need to rest. As frustrating as it is to need so much rest, I know that I deal with things better when I am less tired. And I think I need to get out of the house!
I’m not usually one to have an issue with Friday 13th. Despite my new open minded approach to spirituality and the like, for me superstition is still just that – superstition – and therefore not of any significance. But the Friday 13th that we have just had really was a bad day. Nothing to do with the date – just a really bad day.
In my last post I explained how I was feeling out of sorts in the morning. With hindsight I wonder whether that feeling was a harbinger of what was to come. The middle of the day was pleasant, catching up with a couple of old friends, doing some work and generally feeling a bit better. But come the afternoon everything was tipped upside down again, by two horrid pieces of news.
First came the dreadful dreadful news that one of the girls on my online community had passed away that morning, at the tender age of 30. Claire was one of those at the heart of our Younger Breast Cancer Network. Diagnosed a mere 10 months ago, like so many of us she had documented her treatment and issues through the medium of the group. She was a real force of nature, supporting so many others during her own hard times and fighting hard to get the right treatment for herself. Some of my friends have blogged eloquently on Claire and her talents and you can read them here:
Claire also reached out to me at the time of my secondary diagnosis and we exchanged messages about treatment, fears and practicalities. She was a warm, strong and intelligent girl, a real personality. Her death was devastating – not only was she so young and so vibrant, not only did it happen so quickly, not only did it all seem so unfair – but – but…..like me, she had triple negative breast cancer. Like me, her first round of chemo didn’t work properly. Like me, she was put onto platinum chemo with gemcitabine. And then she died.
My extreme sadness at her death wasn’t linked to any fear about my own situation. I was heartbroken for her and her loved ones and for the life she might have lived. But I have had to work hard since to stop myself from drawing the parallels. To stop myself from being too scared that I might be next. To stop myself from visualising my last blog post similar to Claire’s last post. We are all individuals in the face of this disease – I know this – and this is what I must focus on. It’s just quite hard.
And as if that weren’t enough, later in the day came the news that a very dear friend of mine has just been diagnosed with breast cancer. It hits so hard when it is a friend, someone whose own path is interwoven with mine in a way previously completely unrelated to Genghis. We have shared many, many things but this is one thing I would happily not share with anyone. She is in good hands, with a top surgeon and the support of an amazing husband, family and friends. But it hit hard. She is in the early stages of her journey, trying to figure it all out, trying to adjust, trying to understand. I am weeping on the inside for her, remembering those dreadful days. I feel sick to the stomach that she has to go through this. If I could, I would take it from her and bear her cancer alongside mine, so that she could carry on with her life. Mine is already burdened by this and taking on her disease wouldn’t change that for me. I don’t want her to have the burden. I don’t want anyone to have it. I hate it.
Friday 13th ended, thankfully, and the next day was a new day. I left the house for the first time in a few days, cleared my head, carried on living. But that day happened. It left a mark.
There are some people who may find this post offensive. Please forgive me. It is not my intention to offend. But there’s something that’s been on my mind for a while and I have to let it out.
It’s about smoking. It’s about the people who smoke. It’s about the people who think that they can dodge the cancer bullet.
Don’t get me wrong. Most of us have had a few cigarettes at some point in our lives. But I’m not talking about that. I’m talking about the hundreds and hundreds of people who I see on the streets, puffing away as if their lives depended on it. Those who have to have a puff regularly throughout the day. Those people who know that smoking kills but blithely continue.
To me (and sorry if this seems harsh) there seems to be a good deal of arrogance in smokers. There seems to be an assumption that they won’t get ill from it. As if they are have some sort of magic protection. As if the rules don’t apply to them. Nothing in life winds me up more than people who think the rules don’t apply to them.
I look at all the people with cancer who don’t smoke, who are fit and healthy, who are coping with (or have coped with) this hideous disease. I look at all the people who have died from this hideous disease. I look at the children, the sweet tiny children, bravely struggling to reach adulthood. I look and I weep and I rail against the unfairness. And I can’t bear it that there are people who take the chance that they too will join our ranks but don’t seem to care.
Smokers, take it from me. Cancer is not fun. Cancer is not a game. Chemo is hideous. I wouldn’t wish this on anyone. It’s debilitating. It’s exhausting. It takes your life and screws it up into a poor shadow of what it was. It’s depressing and grotty and boring and vile. Why take the chance? How can you assume it won’t happen to you? Cancer happens to 1 in 2 of us, apparently. Don’t you want to be in the good 50%? Don’t do it. Don’t be arrogant. Don’t assume. Don’t risk it. Nothing is worth it. Trust me.
I can’t remember the reason, but there was an occasion at school when some girls in my year got on stage during assembly and performed Gloria Gaynor’s song “I Will Survive”. It might have been when we finished our GCSEs, or when we were leaving school after A Levels. Even before that, the song resonated with me, but since then it has been firmly lodged in my head. It was a great early example of girl power, of what a woman can do in the face of adversity, of saying “no” and meaning it. Cheesy – yes, but also meaningful.
Some of the lyrics seem particularly significant right now, in the face of secondary breast cancer:
“Did you think I’d crumble?
Did you think I’d break down and die?
Oh no, not I.
I will survive.
For as long as I know how to love I know I’ll stay alive”
…..and so on.
It’s fair to say it’s not entirely an accurate reflection of how I’m feeling. For example, it should be “For as long as they keep pumping me full of life saving drugs and as long as there are medical options, I know I’ll stay alive”. Actually, “know” is too strong – it should be “hope”. Although revising the lyrics that way certainly doesn’t scan very well.
But the point is this. At the moment, there is a good part of me that feels confident that I’ll survive – at least for a while. Which is funny, really, because ladies in my online community keep dying. Another two reported in the last 24 hours. All young, all fighters, all much loved, all too early to go. Somehow the sad news triggers the petulant child in me – I’m not going to give in to the cancer – I’m going to keep going and going and going. I figure this – if 98% of early stage breast cancer gets cured, that means that I was in the unlucky 2%. But the statistics have to work both ways – so if only a small percentage of women with secondary breast cancer live a long time, I have a good chance that I will be in that small percentage yet again. I’ve blogged before about how my family members seem to fall into the small percentage category time and time again. So let me fall into that category one more time, and stick two fingers up to cancer for as long as possible.
When I say this, or write it, a good part of me feels sick, as if I am tempting fate. I fast forward a couple of years, see my family after I’m gone re-reading these words and crying at my brave but misguided beliefs. I see them shaking their heads at this blog entry – “If only”, they say. And then the petulant child comes out again. “No”, she says. “That isn’t what happens”.
Who knows? Really, who knows? As I have told numerous friends when discussing my situation, no one knows. OK, so I have a particular situation. But anyone might walk out into the street and be hit by a car. Anyone might have a secret time bomb ticking inside them. Anyone may have a bad accident. No one knows. We are living in a time when a lot of money and effort is going into breast cancer research, when I regularly hear about a new drug or treatment being developed, including for triple negative breast cancer. So no one can say. They can be guarded about my future. But they can’t say for definite.
So with that in mind, I think I’m ok to keep singing along to Gloria in my head. A bit of disco never hurt anyone – particularly when it comes with a large dollop of positive mental attitude.
Last night Elliot nabbed one of my sleeping pills to try to ensure a good night’s sleep. Suffice to say, it didn’t work as our darling roguish little boy came in at 5.45 a.m. Worse, Elliot was left with a sleeping pill hangover which he didn’t enjoy. This prompted much laughter on my part as the after effects of sleeping pills really are the tip of the iceberg for me. He jokingly accused me of being a pill pusher. This in turn reminded me of the funny online conversations I have been having in recent days with my “gang” on the young ladies’ cancer circuit AKA the Seven Bitches. (I’ve never been in a gang before. It’s quite exciting. Except that we are brought together by breast cancer, which is pretty crappy.) The girls have been sending me their thoughts on pain relief as I’ve been having quite a lot of ouchiness this week (eek – language – you can tell I’m a Mum, can’t you?!). Many minutes, if not hours, of online chat this week has been devoted to the merits of various forms of prescription pain relief. We all ended up sounding like a group of druggies. It would be funny, if it weren’t just a little bit sad.
One of my biggest fears as a child (and even now, as an adult) was the fear of being left behind. I used to get into a sweat thinking about my parents accidentally driving off without me, or walking ahead and me not being able to keep up, or being at the shops and watching them walk out of a store without me. I can think of a number of childhood incidents that probably contributed to this fear (none of them major, I hasten to add) and it has stayed with me. I still don’t like being the last in a group to leave anywhere or the one asked to stay behind for any reason. It’s irrational but it’s still a part of my psyche.
I am finding more and more that this horrid disease is making me confront anxieties and behaviours I have had since childhood, and the fear of being left behind is no exception. Over the past couple of weeks the fear has been particularly challenged and I am having to find fresh ways to deal with it. I am being left behind by those breast cancer friends diagnosed around the same time as I received my primary diagnosis, who haven’t had their legs taken out from under them by the shock of a secondary diagnosis. They are all moving through the course of treatment, emerging from the other side, starting to think about life post-cancer. I watch them emerging into the post-treatment sunlight, blinking in the light of their new normality, testing their strength, able to contemplate life almost as it once was. I feel like I am watching from the shadows, being pinned back in the dark and screaming silently after them. I am so so thrilled that my compadres are moving on and I am so so sad that I will never be able to. I see new girls joining the community and realise that, in time, they too will move on and again and again I will be left behind.
In facing this fear one possibility is to seek solace and companionship from others with secondary breast cancer. They too can’t move on. But that is a rocky road. The demons haunting that community are fierce. The girls talk of treatments ceasing to have any effect, of pain, of organ failure, of limited time left, of end of life choices. They too are leaving people behind – not by moving on but by passing away.
So who understands? Who shares this narrow space between the once-ill and the dying? Who is there who won’t leave me behind but will walk at my pace, hold my hand, lean into me? There are so few. So few. When I stop and think about this the loneliness is palpable. I am being left behind and it makes me sad.
Pearls of wisdom
I took a real nugget away from my counselling session yesterday. I had spent quite a bit of time whinging about various things and situations and kept interrupting myself to comment on how trivial it all sounds in light of my prognosis. My counsellor then gave me a real gem. She said that she thought it was great that I am still able to care about the smaller things – that this shows I’m still living my life, not putting “real” life on hold. She told me she thought I should be positive about remaining so connected with the smaller things and that it was a good thing still to care enough to grouse. It was a pearl of wisdom, one that I was very grateful to receive. It turned what I had felt was quite a negative session into a very positive one and threw a shaft of light on the grey that I was feeling.
I’ve been in a bit of pain on and off, particularly over the last few days. Elliot is keen for me to ask my lovely chemo nurses for some stronger pain relief, but it’s a real Catch 22 situation as stronger drugs will inevitably mean I will feel woozy. The choice seems to be between being clear headed but in pain or woozy but comfortable. Neither option screams “pick me”. I feel that I spend much of my chemo and the days immediately following feeling sleepy and mentally blurred so I am loathe to surrender to more of the same on my “good” days. Yet equally why be in pain when I don’t have to be? Yet another delightful paradox generated by my current position.
On a more positive note, my darling sister in law organised a personal shopping experience for me at the weekend to help me find a dress for my brother’s wedding. As is often the case, she got it spot on. We had a brilliant time with the lovely Amanda in Debenhams at Westfield, and needless to say I came away with an outfit that, even in my large steroid-induced chemo-filled size, flatters and makes me feel special. Hooray!
Which leads neatly onto….
Today my team at work all went for lunch at our local favourite Italian restaurant. It was lovely (not just the pizza!) – a real dash of normality and niceness. The team keeps growing but nonetheless retains a great dynamic – friendly, intelligent, fun people enjoying each other’s company.
One of my special online friends passed away two days ago. I have been heartbroken and thinking of her family constantly. Penny was 39, mum to two small boys and a loving wife, sister and daughter. She was a beautiful lady both on the outside and the inside. Repeated treatment failed to work on her extremely aggressive breast cancer and she ended up in huge amounts of pain. In the end she saw the writing on the wall and decided to decline further treatment. She lived only a few weeks longer. Although she and I never met in person I felt a real bond with her. I loathe what happened to her. I feel like my heart is spilling over with grief for her loved ones, for the hole she has left behind in their lives. Penny, I hope and pray you are at peace. Sleep well, lovely lady xxx
In 24 hours I have experienced the best and the worst of living with Genghis. I have cried with laughter and with pain. I have celebrated, I have been thankful, I have been joyful; I have also cursed, I have ached and I have suffered.
That all makes things sound very melodramatic but, to be honest, it was a day and a half of extremes. Oh, and I’m tanked up with codeine, which is probably partly to blame for the perhaps exaggerated tone of this blog.
So, the cocktails. The good bit. I took a half day holiday from work to meet up with some fabulous ladies. I’ve blogged before about the online community of which I’m a fairly active member and which has been a huge emotional and practical support to me. Within the wider community is the wonderful Younger Breast Cancer Network, which I’ve also mentioned before, and within that is my special group of girls, aka The Seven Bitches (!), aka my lovely friends, Sarah, Rebecca, Aimee, Cinzia, Andrea and Jojo. We all received our primary diagnoses around the same time and over the months have gradually come together, some of us meeting up in person, all of us supporting each other remotely.
We met in Central London (unfortunately Aimee couldn’t make it) and started with cocktails. I was hugely excited. It felt like one if the few very fun things to happen since my initial diagnosis last June, and certainly since the secondary diagnosis in December. It felt very decadent to be out in the middle of the day. It felt great.
It was an amazing afternoon. We talked about cancer, to be sure, but also about everything but cancer. We laughed and laughed. We drank and ate. We bonded. We were silly. We were carefree. Sarah has blogged about our meet up and included some wonderful pictures: http://hbocuninformed.blogspot.co.uk/2015/02/the-seven-bitches.html. You can see how fun it was (and how much we drank!).
What you can’t see is quite how much it meant to all of us. So let me tell you why these girls are so important, so wonderful. They all get it. They all understand what this cruel disease can do, how it casts a shadow, how it never goes away. They understand the fear and the sadness. These girls in particular are a wonderful group. They are all intelligent, articulate, witty, individual, strong, sassy, motivated. We may all have different backgrounds but we all share a lot. These girls who – absent Genghis – I would never have met are now firmly rooted in my life.
I had to duck out slightly ahead of the others for a treat with my amazing husband. Thanks to him (and his membership of BAFTA) we had tickets to the premiere of the first episode of Series 3 of the US drama House of Cards. This was set up like a film premiere, with a red carpet event in Leicester Square, a big screen and the stars of the show. So I got to walk the red carpet with the paps either side. It was more than a little surreal but great fun. After the screening we all decamped to a glitzy hotel for the after party (dahhhhling) where we quaffed champagne (think it was Prosecco actually) and scoffed some very delicious canapés. And I got to spend some real quality time with my darling husband.
Needless to say that by the time I got home I could hardly speak, I was so exhausted. But it had been worth it. I’d had so much fun, and been taken away from it all. You can’t put a price on that. In my situation any distraction is a welcome one. To have two fabulous experiences in one afternoon/evening is downright amazing.
Unfortunately, in a few hours I went from the ecstasy to the agony. And agony is unfortunately not an exaggeration. I had requested a liver biopsy to test the mets on my liver. There is a possibility that when breast cancer metastasises to the organs, its receptor status may change. You will remember from my earlier blogs that my breast cancer is triple negative. So I wanted to see whether the spots in my liver are hormone or HER2 positive, as if so, there may be other chemotherapy or targeted drugs that could treat them. This is pretty unlikely for various reasons, but worth testing, given the belt and braces approach that I am taking to fighting Genghis.
The doctor who performed the biopsy was absolutely lovely. The procedure itself was absolutely horrific. It was hugely uncomfortable and required me to stop breathing for what felt like an eternity so that my liver did not move in the middle of the doctor trying to grab a sample of it. And yes, you will have gathered from this that the procedure was performed under local anaesthetic so I was wide awake throughout the whole thing.
The pain kicked in fairly quickly afterwards. Initially, it felt like I have been kicked in side several times by someone with a very hard steel capped boot. I quickly found that lying on the opposite side to the incision was far more comfortable than lying on my back, but didn’t realise at that time that I would then spend a very considerable period of time on that same side. Lying on my back was only painful at the site of the incision, but also brought on an excruciating referred pain in my shoulder, which is a common side effect of liver damage. I asked for pain relief – I was given paracetamol. Suffice to say that was not the most effective of drugs for the pain I was in. Eventually I was given something a bit stronger – codeine. Thankfully after about an hour this took away the worst of the pain and I was able to breathe a bit more deeply again.
The other particularly unpleasant immediate after-effect of the procedure was that I had to lie perfectly still for four hours. This was to help my body repair itself. It would perhaps have been more bearable if I had been able to lie flat on my back, being stuck on one side for four hours wasn’t the most fun I’ve ever had.
Eventually they let me go home so, groggy and tired, I crawled into bed, only to realise that I would be stuck sleeping on the same side for the whole night. And here I am, the morning after, still lying on that same side! Needless to say, it’s getting a bit stiff. It makes you quite inventive being stuck in one position. And
the dictate function on my iPhone is coming in extremely useful for the purposes of this blog entry.