Wowzers!

Wow! This blog has been shortlisted for an award!! It’s the BritMums Brilliance in Blogging award and it’s in the Inspire category. 

Now you know how I feel about the word “inspirational”. Nonetheless it’d be kind of great to win it. So if you like what I write, please vote here: https://www.surveymonkey.com/r/bibs2015

Here are some reasons I’d like to win:

1. To raise awareness of secondary breast cancer and thus promote investment in research. 

2. To encourage more young women to check their breasts. Breast cancer is NOT an old person’s disease. 

3. To help others in a similar position realise they aren’t alone. 

4. To highlight how precious life is. 

5. To give my kids something to make the proud of me and to help them realise that some good can come from this horrid situation. 

6. To allow me to thank more publicly those who are so important to me and those helping me on this fight. 

7. To give me extra fuel for my fight. 

So please, take the time to click through and vote. Thank you. 

Signs

A very religious man was once caught in rising floodwaters. He climbed onto the roof of his house and trusted Gd to rescue him. A neighbour came by in a canoe and said, “The waters will soon be above your house. Hop in and we’ll paddle to safety.”

“No thanks” replied the religious man. “I’ve prayed to Gd and I’m sure he will save me”

A short time later the police came by in a boat. “The waters will soon be above your house. Hop in and we’ll take you to safety.”

“No thanks” replied the religious man. “I’ve prayed to Gd and I’m sure he will save me”

A little time later a rescue services helicopter hovered overhead, let down a rope ladder and said. “The waters will soon be above your house. Climb the ladder and we’ll fly you to safety.”

“No thanks” replied the religious man. “I’ve prayed to Gd and I’m sure he will save me”

All this time the floodwaters continued to rise, until soon they reached above the roof and the religious man drowned. When he arrived at heaven he demanded an audience with Gd. Ushered into Gd’s throne room he said, “Lord, why am I here in heaven? I prayed for you to save me, I trusted you to save me from that flood.”

“Yes you did my child” replied the Lord. “And I sent you a canoe, a boat and a helicopter. But you never got in.”

I’ve heard this story on more than one occasion. The moral is clear – don’t ignore the signs. They may be indirect, but they are the assistance that is needed. That’s easy to say, but sometimes it is hard to spot the signs, hard to know what they are and what they mean.  I do think, though, that one of the good things to come out of this battle with Genghis, is that I am getting better at this.  Here are four signs that I have spotted in the last few days, that I have allowed myself to follow.

The first came in the form of a food supplement, pressed on me by a friend. I’m always sceptical about this sort of thing.  It’s always suggested or given with the best of intentions, but I trust my oncologist when he says that if cancer were curable purely by diet, why would the NHS spend so much each year on treatments.  This particular food supplement wasn’t suggested as a cure, but as an aid to dealing with some of the side effects. It sat in my kitchen for a few days. I Googled it – the reviews were very mixed. But then my bloods came back poor, and I desperately wanted chemo to go ahead.  So I took the supplement – and my bloods were good enough to have the chemo.  Sign number one – don’t always be such a sceptic.

The second sign was also food related.  If I had a pound for each of the times I’ve heard that vegetable juice (and kale juice in particular) would help me, I’d be a rich lady.  I’ve always railed against juicing as a cure for cancer.  That’s not to say that it’s not healthy, though.  Anyhow – last week, a friend at work introduced me to a new cafe that has opened around the corner. It is a healthy food/organic style place offering, amongst other things, fresh juices.  Including kale juice.  I’ve not yet tried it, but it’s there in front of me.  I might just yet.  Sign number two  – don’t ignore what’s under your nose.

The third came in the form of more practical assistance. So far I have rejected any thoughts of claiming help from the government, although I am a candidate.  I was unwilling to apply for a Blue Badge, because I don’t feel that I’m disabled. I was unwilling to claim PIP (Personal Independence Payment – a benefit payment for the seriously unwell) because I don’t have to rely on the money. I was also under the impression that PIP would only be available to me if my doctor filled out a form certifying I had a terminal illness. To do this seemed to me to be tempting fate and it was just a step too far.  But one day I checked – and I don’t need to claim I’m terminal to get PIP.  And suddenly, the whole idea of asking for some extra help no longer seemed so bad.  One of the nurses had already offered to help me with the forms. So in the end I went ahead and did it – claimed PIP and asked for a Blue Badge too.  Sign number three – don’t be pigheaded.

The fourth sign was very physical.  Some years ago, my kids bought me a mug with “Super Mum” written on it in big letters.  I’ve always used it at work, and with pride – it reminds me of my kids all day long and it reminds me that I should be proud of being a working mum. The other day, as I was getting ready to leave the office, I took it to the kitchen to wash it.  Somehow, I dropped it, and it smashed.  I was really quite upset and struggled to avoid the implication that I am no longer a Super Mum. The next day I had chemo and during one of the conversations with the nurse, I found out that I have been tolerating one of my chemo drugs for longer than any of their patients has done before.  However, it’s pretty clear that my body is now starting to struggle a little with it.  But that’s not the end of the world – there are alternatives, or they can reduce the dose, or the frequency. The fact that I have done so well, and that there are alternatives, made me feel really chipper.  I felt like I have been Super Mum, but it doesn’t matter so much now if I can’t keep it up because there are other ways to go.  Super Mum can reinvent herself. Sign number four – as Maria said in The Sound of Music, every time the Lord closes a door, somewhere He opens a window.

The truth

I saw my counsellor today. It was extremely cathartic.  And I realised that I find it easier to speak the truth to a stranger than to my loved ones, easier to type it into my blog than to say it face to face.

I’ve not been feeling great since my Big Chemo day last week. The physical exhaustion has created a form of emotional exhaustion.  I’ve spent quite a bit of time over the last few days wondering why I’m putting myself through this treatment, whether it’s all worth it. Why am I doing this, when I may very well die from the disease in any event? Why invest so much in fighting to stay with my family, when the treatment means I don’t have the energy to be with my family? I think that most of this wondering has been done subconsciously as I’ve not been dwelling on it greatly in my conscious mind. But today it all came tumbling out.

I don’t think I realised quite how down I had been feeling until I started talking about it – and then the floodgates opened.  I’m sure it is a result of feeling physically battered by the treatment rather than anything else.  I spoke about how I have been feeling but how I don’t find it easy to share it because I need to be strong, I need to not let my loved ones be sad, I need to support them. And as usual, I was given a gift by my wonderful, wonderful counsellor. She told me to let others support me. She told me to look after them by letting them look after me. She told me that I don’t have to set myself such high standards the whole time. I am allowed to be sad and fed up and to let it show. I’m allowed to think it’s all rubbish – because it is.  It’s ok to show my true feelings because it doesn’t matter if it makes people sad.  I am a strong person but that doesn’t mean I have to be strong all of the time.  If letting it out makes me feel better, helps me regain my positivity, then that is good.

So here is the truth.  The truth is that I’m shattered, physically and mentally.  The truth is that I’m tired of trying to be strong all the time.  The truth is that my choices are between dying and living as a patient – not living as me. The truth is that this sucks. The truth is that whilst I love my family and friends and my job, I don’t love my life at the moment.  The truth is that I feel strong and positive a lot of the time, but weak and sad some of the time. The truth is that fighting Genghis is the hardest thing I have ever done – and it’s certainly not a battle I would have chosen.

So please don’t tell me I’m brave or strong or inspirational or amazing.  Because the truth is that those words make it harder for me to be truthful about how I’m feeling.  They set a standard that I feel that I have to live up to.  And the truth is, it’s hard enough to live at the moment without that standard.  This is hard. This is horrid.  That’s the truth.

Take these words out of the dictionary – revisited

Last November when I was going through treatment for my primary breast cancer I blogged about the top ten words or phrases that, as a breast cancer patient, I feared or loathed the most and wanted removed from the dictionary. In the last few weeks and months since my secondary diagnosis, I’ve revisited these. Many have changed, some remain. Here is my current list:

1. Prognosis. Once you’ve been told you have secondary breast cancer, you know what the ultimate prognosis is. There’s no getting away from it. The bastard disease will almost certainly get you in the end. Once you know this, it’s a matter of when, not if. And frankly, who wants to know that? The worst case prognosis for someone in my position is 6-9 months. The best case is unknown. You can’t live the rest of your life – however long that may be – fretting whether the end is coming this month, or next. 

2. Scan. I’ve blogged before about scanxiety. I think the best way to deal with it might just be to remove the word “scan” from the dictionary. In my favourite TV show, The West Wing (also the subject of earlier posts), the President’s team develop a superstition about using the word “recession”, so they replace it in their conversations with “bagel”. So I vote we do the same with the word “scan” – let’s replace it with something anodyne. Why not “pencil”? Or “cardigan”? “I’m going for a cardigan today”. It has a ring to it. 

3. Results. Worse than a “cardigan” is what comes after. The “cardigan” doesn’t actually change anything. But the results do. They change your mental state. They may change your course of treatment. They may change the prognosis. No one likes results day. 

4. Progression. The worst sort of results. We secondaries girls are happy to be Stable Mabel. We are ecstatic if our mets have shrunk. What we dread is progression – the news that the mets have grown, or developed elsewhere. The news of progression of this awful disease takes your breath away. The very fragile state of mind that you have managed to maintain – just about – is shattered in an instant. The horrific reality of your own mortality leaps up and thwacks you between the eyes yet again. 

5. Brain. I think it’s fair to say that brain mets are the mets that are the most feared. Not that anyone wants mets anywhere in their body. But the brain is the place that we hope will remain unaffected for as long as possible. For some of my sisters in arms, the brain is the first or only place the little cancer seedlings grow. For others, brain mets are a sign of progression. Treatments are possible but grim – whole brain radiotherapy, cyber knife and the like. Driving is no longer allowed, so independence is drastically reduced. For me, the possibility of brain mets is one of the scariest of all possible outcomes. This disease has taken my boobs, my hair, my energy. Please not my brain as well. 

6. Hospice. Even writing the word makes me feel cold. As much as people can tell me that a hospice is a place where you can go for support, pain management and other positive help, to me a hospice is simply a place you go to die. Yes, people go for short periods and come out again. Yes, you can go just for the day. But the underlying rationale is to care for the dying. I don’t want to go near one. 

7. Palliative care. In some people’s language, the treatment I’m getting now is nothing more than palliative care. My cancer can’t be cured, but I can be cared for while I try hard to put off the inevitable. I reject that wholeheartedly, no matter what anyone might say. Palliative care to me is about caring for the dying. I am not dying – I am living. And fighting bloody hard to stay that way. 

8. Angel wings. The awful euphemism used when someone dies – “X has got her angel wings”. It is meant to be soothing, to be uplifting, to make it seem less bad. But it doesn’t. I’m as guilty as the rest of them for using these words, and I’m so sorry for doing so. There’s nothing soft and fluffy about dying from cancer. There’s nothing hopeful to be found in it. It’s dreadful and black and sad.  

9. Normal. There’s no such thing any more. 

10. Brave, inspirational, amazing. Last time I blogged on this subject these words were on my hit list – and they remain on the list. I am none of these things. I’m terrified, not brave. I don’t want to inspire anyone to live through this – I wouldn’t want anyone to have to. I am just dealing with the shitty hand that I have been dealt in the only way I know how. 

A guide to the afterlife

I had my chemo today. It was hard going and I feel absolutely rubbish now, but having had it delayed for three days due to low platelet levels I was still very glad to have been given the go ahead. 

The first day of each chemo cycle is a very long one. We start with blood tests around 9 am and finish any time between about 4.30 pm and 7 pm, depending on all sorts of factors. It’s a long time to spend in a windowless room, so usually I try to unhook my pump and take a wander into the corridor where I can sit down and see the sky. The nurses are amazing, coming out to give me the next infusion when they hear my pump beeping, popping out for a chat and even offering tea and biscuits. 

This afternoon, as I sat in the corridor staring at the blue sky, I noticed the display of advice booklets standing by the door. My attention was drawn to this:

  

Now, I’ve been on the Macmillan website in the past, so I know these booklets exist. And being me, I’ve read the one on End of Life, on the basis that being prepared is half the battle. It isn’t easy reading – trust me. But today, through the chemo fog, it made me giggle. I sat there thinking – I wonder if, on the other side, there’s another booklet, the next in the series, a Guide to the Afterlife. I wonder if you turn up at the Pearly Gates and are handed a map and some instructions – what activities happen when, how to make the most of what’s on offer and so on. A bit like arriving at a nice hotel. That’d be great. 

Don’t get me wrong. I don’t have any great belief in an afterlife. And, even if it does exist, I’m not at all sure it’s like a luxury hotel. But it made me smile. It made it all seem a little less scary. I’m still fighting and I’m still here. But if and when my day does come – in 5 years, or 15 or 50 – then rest assured. On arrival, I will be asking for an upgrade to a room with a view. And I will see you in the bar for Happy Hour cocktails. 

Cancer, Conservatism and the counterfactual

I’m a competition lawyer. Contrary to what some people think, I don’t advise on the law relating to prize competitions (plural), but on the law relating to competition (singular). In other words, the law on how to maintain competition in the market, preventing big companies from getting so powerful that they squeeze out their competitors. 

One of the tools we use to work out if behaviour breaches competition law is to consider the counterfactual. This means we look at what would have happened in the absence of the questionable behaviour and see whether that behaviour led to the reduction in competition or whether that reduction might have happened anyway. This tells us whether it’s the behaviour that is problematic or something else. It’s a useful tool and one that I have seen some echoes of outside of my work in recent days and weeks. 

The first thing that led me to consider the counterfactual was my latest appointment with my oncologist. A few days ago I had a scan and, thankfully, the results showed that my current chemotherapy is continuing to shrink the metastases in my liver. So when I saw my oncologist a few days after the scan, we discussed treatment going forward.  We talked about a number of different treatment options for the future, although we both agreed that if it ain’t broke don’t fix it, so I should continue on the current regime for the moment. One of the options I wanted to hear his view on is a study being carried out at a clinic in central London. The doctors there are using off-patent generic drugs which were developed some time ago for a variety of uses not including cancer. They are using a cocktail of these pills to see if they will be effective alongside more conventional treatment options. A number of the ladies from my online community have been visiting the clinic and have signed up to take the pills. it is a really interesting approach to cancer treatment and one that I will certainly be keeping an eye on in the future. My great friend, Jojo Gingerhead, has blogged about her appointment at the clinic and I urge you to read it because it really is very interesting: http://www.themalignantginger.co.uk/care-oncology-clinical-study-will-i-grow-horns-and-a-tail/

Anyhow, I raised this with my oncologist. He was relatively neutral about the whole thing and – to be fair – somewhat sceptical. The point that he made that really hit home was this: if you as a patient are taking these drugs alongside conventional chemotherapy, and you see an improvement, how can we tell whether it is the chemo or the drugs that is helping? In other words, there is no clear counterfactual. And I think that is the case with a lot of possible treatments for me in the future. If I were prepared to go on a trial of the drug and give up all other forms of treatment at the same time, then the counterfactual is clear. No drugs – situation deteriorates. Drugs – any improvement must be due to the drugs. But I am not prepared to take such a big gamble and give up conventional treatment unless I am sure that I am in a safe place before I go on the trial – in other words that the cancer is very unlikely to grow back while I remain off the conventional treatment.  I am not sure that I am ever going to be in that place, unless I reach the end of my treatment options of course. It just seems too big a risk.

The other thing that has got me thinking about the counterfactual recently is the General Election. For me, as for a large number of my friends being treated for breast cancer, healthcare is clearly an important issue. There a great deal of online fury directed towards the Conservative Party who are seen as having privatised the NHS. I would say that there is near universal condemnation of this. My wonderful friend Sarah has blogged on this: http://hbocuninformed.blogspot.co.uk/2015/04/save-our-nhs.html and has been filmed for an online campaign: https://m.youtube.com/watch?v=Ap7_7BmdWbk

I am a huge fan of the NHS and in no doubt that it should continue and should be providing universal healthcare free at the point of service. But what I am not entirely sure I understand is why people are so against privatisation of the NHS. First, privatisation comes in many forms. No one that I have heard argue against privatisation has expressly spelt out what form or aspect of privatisation they object to. Nor has anyone explained the reasons why they object to the concept of privatisation of the NHS, or at least, not clearly. There seems to be a visceral gut reaction that the privatisation of the NHS is a bad thing and will lead to a reduction in the provision of health services. There also seems to be a huge dislike of the idea of private companies profiting from the NHS, although again, no one has explained precisely why they dislike this. Certainly, private companies seem to be involved in many aspects of the provision of public services and profit from them without causing similar levels of anger.

Please don’t get me wrong. I don’t have a party political position on this. I am the archetypal floating voter. The Conservative Party doesn’t sit easily with me in a number of ways, the biggest of which is their anti-European stance. But the arguments against the Tories that they are evil because they are privatising the NHS don’t seem to me always to be fully thought through. And this really for me is about the counterfactual. If the NHS were to be a magnificently efficient smooth running operation in purely public hands, then I could understand why handing parts of it to the private sector and allowing them to make profit might seem objectionable. But that is not the counterfactual. The counterfactual is a highly inefficient, messy, bureaucratic and poorly functioning NHS. If allowing private companies to run discrete services within the NHS increases efficiency and improves service delivery, then why is it so bad that those private companies may also profit from it? Which is better – a shoddy NHS purely in public hands or an improved NHS which has a measure of private sector involvement? 

I am pretty sure I am opening myself up to being lambasted by publishing  this blog post. If anyone can come up with some good arguments to persuade me to change my mind, I am very open to receiving them. As I said, I don’t have a political agenda. But please, consider the counterfactual. I always do.

Next year in Jerusalem

We are currently celebrating the Jewish festival of Passover (Pesach in Hebrew). This remembers the exodus from Egypt, when the Hebrews were led out of slavery by Moses after Pharoah had refused to let them go, despite G-d having sent the ten plagues.  The slaves left in a hurry, under cover of night, and did not have time to let their bread rise. In memory of this we celebrate the eight days of Pesach by abstaining from all food containing yeast and other raising agents for the duration. On each of the first two nights of the festival, we have a special meal at home, the Seder, during which we retell the story of the exodus and eat symbolic foods. The Seder ends with a song in which we express our hope that next year we will celebrate Pesach in Jerusalem. This is shorthand for the hope that in the next year the Messiah will come, as we believe that he will bring us to Israel where we will rebuild the Temple.

This year, Pesach is proving particularly poignant. There is the obvious reason – looking forward to “next year in Jerusalem” is hard when there are no guarantees that I will still be around next year.  And in lots of other ways, Pesach is serving as a reminder of what I am fighting for, of how high the stakes are. First – the physical. Traditionally, celebrating Pesach doesn’t just mean avoiding unleavened foods. It involves a deep clean of the entire house to remove any leaven, changing over all the cutlery, crockery and cooking pans and utensils to ones specially saved for Pesach and cooking a whole load of food as shop bought food is not an option for the duration of the festival. It is a mammoth effort, particularly as the festival only lasts for eight days. It is exhausting. And for that reason, I have not been allowed to do any of it this year. Instead, we have all decamped to my parents’ house up the road and my darling mother is doing it all for us. Whilst it is lovely to be with my parents and to spend so much time with them, I feel very sad that physical limitations have prevented me from celebrating in my own home. Not only that, but every time I go to help, I am told by several people in no uncertain terms to sit down. I feel like an invalid. I appreciate so much that people are looking after me, but it is somewhat depressing to be treated like an old lady. Everyone wants me to concentrate on fighting the disease, on getting better. But I’m not sure if anyone truly appreciates that part of my fight is mental and not physical. Part of it is about feeling normal, about feeling able to do normal things, about feeling like a 38 year old not a 98 year old. It’s a tough one.

Being in my parents’ home and being treated like a sick person has made me think a bit more like a sick person. Physical down time has given me a lot of time to think. Not all of my thoughts have been positive. I have found myself considering the end. And amongst those thoughts has been this – if I lose the fight, should I come here to die? Would it be better to die in my parents’ house than in my home which would leave my husband and kids with a constant reminder of what happened? Would it be better for my mum to look after me at the end than my husband? They say that losing a child is one of the worst things that can happen to a parent, but I can’t imagine that it is any worse than losing a spouse or a mother when you are young.  I have been wandering through the bedrooms here, wondering which bed would be the best if I am in palliative care. Where would there be room for the monitors and drug paraphernalia? Which bed has the most space around it? Apparently, the vast majority of people in the UK want to die at home but most people end up dying in hospital. I am determined that that will not be me.

All that said, I feel an overwhelming need to survive for a good deal longer so that I can experience many more Pesach celebrations with my family. Age seven, Natalie is really aware of the festival, and it is possibly the first time that she has truly thought about it and what it means. Just before the festival started, we had a deep and meaningful conversation about why we are celebrating it and what being Jewish means. She got upset that we have to do things differently from her non-Jewish friends. I explained to her why I find it really important to be Jewish. The tradition and history of the religion, the survival of the Jewish people despite centuries of persecution, the Holocaust, the sense of community – these are just some of the reasons that it is important to me to pass on my religion and culture to my children. Natalie listened carefully and took it all in. She asked some really clever questions including some that I couldn’t answer – for example, why do we not live in Israel given that we believe Israel is the homeland for the Jewish people? She participated fully in the two Seders and at the end of the second whispered to me that she really quite enjoyed it now that we had done it twice. This gave me so much pleasure. I want to do it again and again with her, watching her learn and grow and watching Joey do the same when he is old enough to take part. It is a really funny thing. As you know, I am not observant but I am traditional in my faith and practices. I feel that passing this on is a really important thing for me to do as a parent. I’m not entirely sure I understand why, but it is. I feel that the longer that I am around the more likely it is that my children will understand this and will take on the traditions and beliefs as their own. I certainly don’t intend to brainwash them, but I believe that my tradition and religion have so many positive aspects that I want them to share, understand and appreciate.

So I continue to fight. In hopeful anticipation of being better next year, I have promised my husband this – that rather than my usual practice of avoiding certain foods which Ashkenazi (northern European) Jews do not eat on Pesach, we will enjoy them next year as Sephardi (southern European and Middle Eastern) Jews do. These foods – “kitniyot” – are  not prohibited by the religion but different traditions have different views on whether or not they should be eaten at Pesach. They include pulses and leguminous vegetables as well as rice. The Ashkenazi tradition is to avoid them at Passover because they rise when cooked – like bread. The Sephardi tradition is that they are permitted. I am from the Ashkenazi tradition, my husband from the Sephardi. So far in our marriage I have refused to cook kitniyot at Pesach. But now I feel that should I be lucky enough to be up to making the food for the festival next year, we should be celebrating that fact. Therefore I have no issue in following my husband’s tradition next year rather than my own. It seems such a small matter when compared with the big picture of the fight that I am currently engaged in.

My final thought on the festival is this. We spend a lot of time at the Seder and in the synagogue thinking about when our forefathers were slaves to Pharaoh in Egypt. The concept of slavery horrifies us in the modern day. We cannot imagine the physical and mental oppression that it must have involved. And yet the Hebrew slaves survived. They were brought out of Egypt and given the Torah, at which point they became Jewish. Since then, Jewish people have suffered all sorts of forms of oppression. Still we have survived. Many have fallen along the way, many have turned away from the religion, but there is something that is seemingly indestructible about the Jewish spirit. I take great strength from this. This Pesach I may well be a slave to my fight against Genghis. But I have hope that, like my ancestors, I will find a way out of the slavery and be able to flourish. If Pharaoh did not destroy us, if anti-Semitism has not destroyed us, if the Holocaust did not destroy us, then I am damned if my own Genghis is going to destroy me.