Opposites

This last week has been one of opposites – opposite views, opposite feelings, opposite personalities, opposite approaches, opposite reactions. If there is one moment or image that sums it all up, it is this – the smashing of a glass at the end of a wedding. Let me explain. 

My little brother got married last weekend. I say “little” because he has always been my “little brother”, but in fairness he is 34 and 6″4 so not all that little any more. I have always adored my little bro – we never squabbled as children, mainly because I bossed him around and he complied! That says as much about me as it does about him, I’m sure. Anyhow. He has been with his now wife for over six years and they have been engaged for over a year and a half. No wedding plans were made for quite some time and it was only my secondary diagnosis that fired the starting gun for the happy couple. Opposite number 1 – my wedding was all but planned within a couple of weeks of my engagement. 

Once they got going, the bride and groom organised their wedding remarkably quickly. It was a mere 12 weeks from choosing the date to the Big Day itself. This was no mean feat. In some circles this might be considered normal, but not for a traditional Jewish wedding which often takes up to a year to put in place. I am extremely impressed that the happy couple pulled it off – and did such an amazing job. For a couple that usually spend hours debating what to have for dinner and can’t make any decision without agonising, when push came to shove they really stepped up and organised a truly fabulous day. 

I’m digressing. What I meant to tell you about is this. At the end of the Jewish wedding ceremony, tradition has it that the groom steps on a glass and smashes it. There are a number of explanations for this, of which the most traditional one is that even at happy times we should remember the destruction of the Biblical Temple, one of the greatest tragedies in Jewish history. Another has it that this is the last time a Jewish husband puts his foot down! It is the epitome of opposite emotions – sadness at a time of happiness.

We then proceeded to have a very happy celebration. The champagne flowed. The food was delicious. The bride was radiant. The groom gave a very witty speech. And my beautiful children – flower girl and pageboy – received millions of compliments. Here are a couple of sneaky pictures: 

 

 

  

 Everything was fantastic. Everyone was happy. But in the midst of this, Genghis reminded me of his presence. Having got up to join in the traditional Israeli dancing, I suddenly found I needed to sit down. Having chatted and drunk and enjoyed myself, suddenly I needed to go to bed. So I slipped off, far earlier than I had intended to. Opposite number 2 – my new self compared with the old me. 

I didn’t go to sleep straight away. I pottered around the hotel room tidying up and getting ready for the next day. The wonders of modern technology and the wonders of my amazing husband meant that I was able to listen to some of the speeches remotely. And then it hit me. A tidal wave of emotion. Of opposites. Would the next time that all these happy family members assembled be at my funeral? Why were there so many healthy older people who were able to stay and celebrate when I am stuck with this terrible disease which limits me so greatly? How could everyone be so carefree when I am fighting for my life? And the only words that came to me, over and over and over, were “I don’t want to go in a box.” 

Sleep eventually overcame me and in the morning it was a brand new day. After a fabulous breakfast I headed to work where I rushed around like a maniac trying to get things done. I really enjoyed what felt like a normal day at the office. The next day – the opposite. It was Big White Chair Day. I spent the following days semi-comotose as the chemo hit me hard this time. Another opposite – from busy lawyer to prone patient in a matter of hours. The haze gave me the chance to look back at the wedding and enjoy the memories and photos. And here’s another opposite – the happy couple don’t want their photos shared, preferring to keep them private. How different from my approach to life, in which sharing the most intimate feelings feels like a blessed relief. 

Now that I am climbing out of the chemo haze I am struck again and again by the way in which life is full of opposites. I only have to go to Facebook to be presented with evidence.  Almost every day there are photos of new babies or snaps of kiddies full of life. And almost every day there are ladies in my online community facing the end of the road.  One beautiful girl lost her fight on Thursday. Another two have eloquently written about their proximity to the end and their decisions to enjoy what time they have left. They are full of grace and strength. Happy-sad. Life-death. Private-public. Busy-quiet. Life is full of opposites. We just don’t always see them. 

Bridget Jones

Remember that scene in the film “Bridget Jones’s Diary” when she is taken away on a romantic mini-break to a big country house hotel? That’s me at this very moment – sort of. I haven’t been whisked away (I organised it) and, unlike in the film, it’s not turning out to be a series of comic misadventures, but there are definitely some similarities. No kids. Big hotel. Green open spaces. Nice china. Posh middle aged couples. And us. 

But most importantly, it’s a change of scene. That’s why we came. That’s why it feels so nice. We have had a really hard time these past few months. Normally I’m not one for splashing out, but in the current circumstances I’m prepared to break that rule. I’m not going to say it’s because I don’t know how much time I’ll have left for these sorts of jaunts (although I’d lying if I said that didn’t figure in the equation at all) but I will say that my predicament has made me realise that life is for living and enjoying, and a nice mini-break away with the hub should be decadent, not penny pinching. 

Being away gives me time and space to breathe and relax and get my head cleared for the next steps in tackling Genghis. (Well, sort of. Totally typically, work has gone a bit crazy and I have been fielding all sorts of new bits and bobs from my iPad since leaving the office. But I love my job and I get excited by new work so I’m not complaining. Or not that much.) Being in a different environment is certainly good for my mental health. And while I miss the kids, I am able to relax properly, knowing they are in safe hands. 

I’m also able to reflect on recent developments. Having found out at the start of the week that I am a candidate for SIRT, a couple of days later I found out that more treatment options are open to me, as the full results of the liver biopsy showed that my liver mets are oestrogen positive. This means they have changed from the lumps in my boob, which are triple negative (I explained what this meant in an earlier blog post). Oestrogen positive tumours are less scary than triple negative ones as they are (in theory at least) treatable with hormone therapies that block the production of the oestrogen that feeds the growth of the tumours. Apparently only 10% of breast cancers morph when they metastasise. Hooray – once again I’m in the minority but this time that’s a good thing. My chemo nurse clearly thinks so as she told me to crack open the champagne. 

It was really nice to have some “good” news, but once again I feel a little underwhelmed. I still have cancer. It has still spread. It still isn’t curable. It is still likely to be life-limiting. I’m still going to have to have ongoing treatment to keep me alive. And – whoop whoop – that treatment is now likely to send me into early menopause. I really want people to understand how and why I am feeling this way. Reactions to my news have been universally positive and excited. Sadly this has tended to make me feel a bit impatient – I need my family and friends to understand the context, to “get” why it’s good but not to over-react. I’m not better. I never will be. 

I don’t know why I’m dwelling on the negative. Ultimately the news may well mean I’m around for longer. And in the end that’s what this is all about. But I can’t help feeling that it means more horrid side effects, more drugs, more hospital visits and so on. Yes, I’m pleased and relieved. But those feelings are most definitely qualified. I’m taking it as a win, but it’s only one battle. The big fight still rages on. 

And with that at the back of my mind, I’m off to be Bridget and enjoy my mini-break. Toodle pip!

SIRTainly, Madam

Yesterday afternoon, I had an appointment at the Hammersmith Hospital with a doctor specialising in SIRT. SIRT stands for selective internal radiotherapy. It is a specialised form of radiotherapy which has been developed to treat cancer that has spread to the liver. It involves putting special radioactive beads up inside the artery that lead to the liver. The beads are taken by the bloodstream to the tumours and hopefully kill them. This is a relatively novel procedure in the UK and is not available on the NHS for breast cancer patients. I am extremely lucky to have private medical insurance that is hopefully going to cover this and give me another option as regards treatment.

The appointment was extremely helpful. The doctor explained in detail not only what the procedure involves but what needs to be done in preparation, what happens afterwards and what the risks are. He was also very interested in my genetic position and in the drug regime that I am currently on. To cut a long story short, I am definitely a candidate for the procedure, but will need to stop my current chemo regime 6 to 8 weeks before I have SIRT.  The doctor and I agreed that if my next scan shows that this chemo regime is still continuing to work, we should not consider stopping it for the SIRT procedure yet.

I felt both lifted and depressed by the appointment at the same time. The doctor was extremely helpful and comprehensive, knowledgeable and interesting, and most importantly, he treated me like an adult. It was extremely good to know that I am a candidate for this procedure and that it has shown some successes in patients in my situation. However, the appointment also reinforced the fact that it is extremely unlikely that the disease will go away and stay away for a long time. It is possible to have the procedure repeated and it is possible that the procedure has some success in shrinking the tumours and killing some off altogether and so can be followed by other forms of radiotherapy or even surgery on the liver. But it is extremely unlikely that once the cancer has spread to the liver, it just goes away following SIRT or indeed any other form of treatment. 

Whilst we were in the waiting room, Elliot also mentioned two other things that brought home the fact that we are both coping with the idea that I will not be around for ever. The first was that we should probably amend our wills to make provision for the children if, for some reason, neither of us are here while they are still under the age of 18. The second thing he raised concerned genetic testing, and in particular whether our daughter’s DNA could be compared with mine to see if there is any shared genetic mutation. I repeated to him what my genetic counsellor had said – that when Natalie is old enough to be tested, probably aged 18, scientific knowledge will be much more advanced and therefore the testing will be much more accurate. Elliot told me I  had misunderstood – his concern was not to get Natalie tested now, but that some record should be kept of my DNA in the event that I’m not around when Natalie is 18. 

I think for the last few weeks, probably following the good news from the last scan, I have been living in a bit of a bubble. I have managed to stop thinking about having a shortened lifespan and allowed myself to imagine that the disease can be held at bay or even sent into remission entirely for quite some time. I don’t think I have ever imagined I will live to be a very old lady, but I have allowed myself to hope I might be around for a good little while yet. I suppose following yesterday, that now seems doubtful again. I know that no one knows what is going to happen, that science is advancing daily and that miracles occur. But I am realist. I know that people die from this disease every day. I know that the prognosis is still guarded. It is just nice to be able to forget that from time to time. And even though this procedure is a possibility for me, it will still be complex, it is likely to be uncomfortable and the results are not guaranteed. But then again, nothing in life is guaranteed. I must remember that.

Happy Mothers Day

We have never really celebrated Mothers Day in my family. It’s a bit of a “Clinton Cards” event – in other words, it seems to have mushroomed in recent years because of the cards and gifts retailers’ efforts to push their sales. And my Mum, having somewhat of a stubborn streak, has always quietly insisted on NOT marking any events that are rooted in Christian celebrations, as we have enough Jewish festivals of our own. 

This year is no different. There have been a few modest cards, and that’s it. Nonetheless it gives me an opportunity to be overt about the love I have for my wonderful, awe inspiring, fabulous, amazing, generous, kind, intelligent, loving mother.  Hopefully I will have many more opportunities, but with my situation I just can’t be sure. 

Let me tell you a little bit about my mum. She was an only child of very hard working, first generation English parents. She was a quiet child, chubby in youth, very intelligent. She was from a very sheltered background, yet her amazing brain sent her to university aged only 17 to study French and Latin. Her degree included a year living in Paris – almost unheard of amongst her cohort. After university she secured a job as an account manager in a big advertising agency – again, very unusual. She met my dad at a family wedding at the tender age of 23 and they were engaged within 6 weeks and married a year later. She moved to work in the family business (my grandparents owned two clothing shops) and when I was born she became a stay at home mum. 

I could not have had a better mother. I know a lot of people say this, but in my case it really is true. It should be clear how brainy she is and how she wasn’t afraid to step outside her comfort zone even at a young age. And yet she was happy to put raising my brother and me (and looking after Dad and our home) above everything else. As a mother of young children, she was selfless, energetic, kind, fair, even tempered and gave us clear boundaries. And above all, she was loving and self effacing. Nothing we wanted or needed was too much trouble. We grew up safe and secure in her love. 

It is perhaps only since becoming a mother myself that I have truly realised what an amazing person my mother is and what a great example she has always set me. She is still entirely selfless – to a fault, perhaps – as well as kind, generous and extremely loving. Having been treated for breast cancer herself five years ago, she knows and understands a lot of what I am going through. Her practical and outwardly unemotional approach to her own disease has set me a wonderful example. She continues to inspire me. I hate so much that I am the source of sadness and anxiety for her because of my own battle. The desire to remove that worry makes me even more determined to vanquish Genghis. 

Happy Mothers Day, Mum. I love you xxxxxxx

The Republic of Equatorial Khundu

My husband and I have been huge fans of The West Wing since it was first aired. Few other TV series stand up to it. It is humorous, thought provoking  and engaging. There are so many parallels between what is shown on the screen and what happens in real life. There are so many lines in the show that summarise brilliantly a real world situation. And, in a great example of life imitating art, not long after the first ethnic minority US president was elected in The West Wing, Barack Obama was elected to the White House.

Developments in the Cancerland this week have once again reminded me of The West Wing. The Cancer Drugs Fund is money the Government has set aside to pay for cancer drugs that haven’t been approved by NICE and aren’t available within the NHS in England. The aim of the fund is to make it easier for people to get as much treatment as possible. The Cancer Drugs Fund started at the beginning of April 2011 and will continue until the end of March 2016.  This week, the Fund cut a number of drugs from its list because it could not afford to continue paying for all of them. The cuts included three drugs used to treat secondary breast cancer. As you can imagine, there’s been a huge uproar about this in my breast cancer community. These drugs have been shown to give women precious extra months with their families. However, they were cut from the list on the basis that they did not offer sufficient clinical benefit. In other words, a cost benefit analysis showed that they weren’t worth funding.

These cuts have prompted a huge amount of activism amongst breast cancer (and other cancer) patients. As a result, there has been some rethinking. There have been petitions, and a large number of blogs and articles on the subject. But until now, I have stayed silent. My reaction has not been the same as that of many others. My reaction has been one of shame. Of embarrassment. Of guilt. Why? Because I have private medical insurance, I do not need to rely on the Fund. Instead, I am dependent on the whims of an insurance company. But those whims tend to be more generous than publicly funded treatment.

And here comes the West Wing analogy. In one season, there are a couple of episodes which focus on the conflict in a fictional African country, the Republic of Equatorial Khundu. Reports flood in of massacres, rapes and other atrocities. The fictional President Bartlett considers whether or not to send in peacekeeping troops and receives a number of briefings from his advisors on this. As the death toll rises, he broods on the likely casualties if he sends US troops to Khundu. He turns to one of his advisors and asks “Why is a Khundanese life worth less to me than an American life?”  The brave advisor responds, “I don’t know sir, but it is.” The exchange  serves to highlight the difference between the value of life in the first and third world. It is a very uncomfortable parallel which sits uneasily with a liberal left wing President.

The parallel struck me when considering the difference between the value of life of those reliant on drugs provided by the state in England and those who are fortunate enough to be covered by private medical insurance. We are a first world country – there should be no difference. Sure, private medicine will always exist but the difference should merely be about levels of comfort and convenience. The difference should not be about whether or not someone can have access to a drug that might mean the difference between life and death. That is simply too third world. That is not right. That is just plain unfair. And as a beneficiary of the unfairness, I felt I had to stay quiet this week while others argued about the cuts to the Cancer Drug Fund. I do not feel that my voice would be welcome amongst those who depend on the Fund. I do not feel able to take part in the debate. All life is precious. Full stop. This is not Equatorial Khundu. 

Quality and quantity

In life we are frequently told that the quality is more important than quantity. When it comes to life itself, I’m not sure that the same holds true.

This all stems from a couple of conversations I have been having in the last 24 hours. Last night I had a catch up appointment with my oncologist, partly to discuss progress and next steps and partly to get the results of my liver biopsy. The biopsy results are not in in full yet, but they indicate that what is in my liver is exactly the same as what is in my breast, therefore no new drug options become available. It’s not the end of the world, although I had hoped that it might be slightly different. When we were talking about next steps, my onc  asked me how chemotherapy was treating me and how I was coping with it. He mooted the idea of a chemo break at some point, to restore some of the quality to my life.

Elliot and I picked up this conversation again this morning. Elliot it is very concerned that my quality of life is poor at the moment. He reminded me how many days each cycle I am fatigued and  in bed and how this restricts what I am able to do. He thought that my oncologist was guiding me towards choosing to have a break from chemo and this is something that he (Elliot) thinks would be a good idea, possibly sooner rather than later.

My view is different. My view is that my quality of life is not poor – it is not too bad at all given my situation. I am able to enjoy spending time with family and friends. I am able to work, albeit not full-time and albeit that some days I am not able to get to the office. I’m able to enjoy new experiences and I’m able to plan ahead for trips away. Yes, I am fatigued a lot and do spend quite a bit of time in or on my bed. And yes, this is not ideal. And yes, this is not the quality of life I enjoyed before I fell ill. But it is still a life with a good deal of quality in it. From my point of view, if the chemo is working, I don’t want to risk quantity of life for an increase in quality. What I mean by this is that I don’t want to risk giving the cancer a chance to grow again just because I am finding chemo exhausting. Frankly, I would happily saw off my limbs with a blunt knife if it guaranteed me a long life. So chemo really isn’t all that bad if it does the job it’s meant to. 

These conversations have made me think quite a lot about what it means to have a good quality of life. Clearly, this is entirely subjective. It depends not only on where you are born but how old you are and what your expectations are, as well as a myriad of other factors. I count my blessings daily. I have a wonderful husband whom I love with all my heart and who loves me back in just the same measure. I have two beautiful children who give me a huge amount of joy. I have amazing parents, in-laws and siblings. I have a job that I love with wonderful colleagues. I have a beautiful house in a nice area. I have an incredibly wide circle of very loving, generous and interesting friends around the world. Financially, we are secure. We are able to buy the food that we want, go on holidays, spoil ourselves at the shops, treat ourselves to nice experiences and generally live the sort of life we want to lead. And that is just the beginning of the ways in which I feel lucky. Other than some physical limitations brought on by exhaustion, I don’t think that the quality of these experiences has been diminished in any way by my illness. And even if it has, I don’t care as I have a lot of living left to do. Quantity definitely beats quality in this instance.

Behind closed doors

Today three of my closest friends came over for lunch, bringing food and cheer with them. On the initiative of my dearest and oldest friend, they organised the shopping and co-ordinated diaries to arrange a Sunday lunchtime treat for me. It was just lovely. 

As you would expect, we chatted about all sorts, including my latest health news. As the conversation twisted and turned, I was reminded of the various health troubles that each of these fantastic women has had to go through. One has battled with anorexia which, to this day, leaves an imprint on her life. The second nearly died from a congenital heart defect during an episode which turned her life upside down and made her “normal” anything but. And the third has faced aggressive breast cancer head on, with several hideous consequences, and has the added burden of a close family member with an impossible health situation. I voiced out loud my admiration for the way they have all dealt with their own crises and my sadness at the fact that each of us, before the age of 40, has had to battle so many demons. We all agreed that life as a grown-up is tough and that, although some people seem to breeze through, you never know what goes on behind closed doors.

While some people choose to keep their problems behind those doors, others find comfort in sharing them. This blog is a great example of that. Writing it all down helps me define and face what I am feeling, thinking and fearing. I am well aware that there are hundreds if not thousands of other breast cancer patients who are blogging and I don’t pretend what I am saying or doing is particularly different or special. But it helps me. I also hope that it gives some comfort to others who might be in a similar situation and come across the blog. This solidarity is so important to me that it brings me out from behind my closed door to share my story with others.

It is with a similar aim that a breast cancer friend of mine, Sarah, has set up a blog site for breast cancer patients who do not have their own blog. The aim is to allow women to share their stories, to help them express themselves and also to act as a source of comfort for new patients who find similarities between their situation and those of others on the blog. Sarah has described this as “positivity”, in that she sees the aim of her site as helping others to share their experiences of breast cancer and so gain positivity from each other. This has generated more than a little bit of controversy on Twitter. Sarah’s idea has been criticised as “pinkwashing” and some breast cancer patients have voiced the view that there are too many positive stories out there and not enough focus on the realism of the situation. These people are angry at their diagnosis and what it means for their life. They argue that having breast cancer is not a positive experience and should not be dressed up as such. 

I think these people have missed the point. I should know – I have stage IV breast cancer and and therefore classed as “incurable”. There is nothing positive in this situation, although I personally have had some positive experiences as a result of my diagnosis. But there is a big difference between saying that an experience is positive and saying that the experience may generate positivity. I do not feel positive about having incurable cancer. I do feel that positivity in my approach to dealing with the disease and in talking with others who are suffering from the same disease is an important weapon in my arsenal. Feeling angry or hurt or resentful about my disease is a waste of energy. My energy is better spent on fighting the disease, on visualising my desired outcome, on looking into new possible treatments, on spending valuable time with my family and friends, on creating brilliant memories, on having fantastic experiences. Most of all, on living. This is what I mean by positivity. And I want to be open about this. I want to share it. I want others to know that it is possible to face this disease in a way that combines good thoughts with realism. I do not want to keep my positivity behind closed doors. 

Oy vey

It has been quite a week. It took me really quite some time to get over the liver biopsy. The only way of dealing with the severe referred pain in my shoulder was to keep myself topped up on codeine. But the codeine had some seriously unpleasant side-effects. And I was only just getting over all that business when it was time for my next big chemo session. Chemo very nearly didn’t happen because my red blood cell count was quite low, meaning I was anaemic. Turns out I wasn’t just exhausted from a great day out followed by a biopsy followed by codeine! My very lovely chemo nurse, Ron, allowed me to have my chemo on the condition that I came back in a couple of days later for a blood transfusion. And so it happened that I spent a grand total of 15 hours in the chemo suite in the space of a mere three days. 

Since then it has been all about recovery. I can’t really say whether I feel more tired than I have done in the past, although rationally I know that I must do. It’s very hard to compare how tired I feel now to how tired I have felt before as I don’t think you can actually remember your previous experiences of fatigue. What I do know is that on Wednesday, the day I had a transfusion, even lying down felt like an effort. By Thursday lying down was okay but sitting up was an effort. By Friday sitting up was okay for some of the time but doing much more exhausted me – I put away the online shopping that had been delivered and that floored me for a couple of hours. Although to be fair, I’m not sure that it was putting away the shopping that did me in or the long discussion with the delivery man, a lovely man who insisted on telling me his life story, recounting his experiences in Israel, his love for Jewish people and Jewish food, and generally hanging around in my kitchen for a good deal longer than he should have done. Oy vey! 

Surprisingly, and positively, my mental approach to the past few days has been relatively calm. I have been taking things one day at a time and not really looking ahead to the next challenge. I think if you had told me a week ago about the various physical traumas I would be put through I would have found each of them quite difficult to cope with, but facing one at a time has been far more manageable. Rather than considering myself as someone who is really quite poorly and has therefore got to go through all of the scene, I have been in a bit of a denial bubble and just thought of myself as going through various different procedures with the eventual aim of complete remission. I have decided that as I have been an over achiever in life so far, I may as well aim to be an over achiever in my current health situation. Therefore complete remission is the goal. 

Sometimes this is hard to focus on, for example, some of the ladies with secondaries in my Younger Breast Cancer Network online group seem to be facing particularly difficult times and there has been lots of talk of things such as funeral planning and memory boxes for children recently. I have learned all sorts of things about the sort of coffins and funerals on offer. Being Jewish, I am used to all this is being dealt with by the synagogue, so it is with a sort of morbid curiosity that I have been reading about people’s choices in this regard.  It is of some comfort to me to know that if I don’t achieve my goal but the worst happens, then all of this will be dealt with by someone else and I won’t have to make some of these hard choices or have some of these horrible conversations. 

But these things aside, emotionally this week has been relatively good. I have dealt with the physical incapacity by seeing a few friends when I can, watching a lot of rubbish television and doing a little bit of work. Conversations with friends have looked to the future – one friend is busy planning her daughter’s bat mitzvah and another the arrival of her second child.  And the sunshine has definitely helped. So I take one day at a time, one step at a time, one issue at a time. Tomorrow is always another day.