It’s not fair

I’ve really tried to avoid thinking about what’s fair and what’s not since my original diagnosis back in June. I’m a big enough girl to know that life isn’t fair and whinging about it doesn’t help and doesn’t achieve anything.

But this morning I’ve been hit with a real dose of the blues. I feel very tired and I hate it. I hate feeling washed out and not having my usual get up and go. I hate the fact that two days at work have been so physically challenging. My daily aches and pains are getting to me. And with the physical comes the emotional – it’s just not fair.

I’d like to think that I’m not a bad person. I’d like to think that I do my best in most situations. I’d like to think that I’m a good wife, mother, daughter, sister, friend. I’m not a saint but I’m not a devil either. So why me? What did I do so wrong? It’s just not fair.

Reading this as I’m writing it, I realise I sound petulant. I sound childish. I sound frankly a bit pathetic. I don’t like the way I sound. I’m not proud of being this way. I’m not being rational, or brave or strong or inspirational or any of those other adjectives that people use in their messages to me. And I know that it will pass – this feeling of being hard done by, of being the victim. But just for now, for a little while this morning, I’m giving in to it. I’m allowing myself to feel this way. And then I will get back on my feet and get on with living, because that’s what I want more than anything.

Scanxiety

So I’ve had my first two cycles of the new chemo regime and soon it’ll be time for the CT scan to see if it’s having any effect. I have been doing fine in the last couple of weeks generally. While the chemo makes me feel weary and achy and nauseous, it is not hard to have faith that it’s working while you are in the middle of it. But reality bites when you face the cold hard truth of a scan. In the cancer community, the fear you experience when waiting for scan results is known as scanxiety. And I can hear it knocking at my door.

In a few days I will go to hospital and put on a fetching green gown. I will lie on a table and be conducted in and out of the scanner (which will tell me in a very polite voice to “hold still” then “breathe away”) before an iodine contrast is injected into my arm and the scan is redone. It is fairly quick. But the wait to see the oncologist and get the results will no doubt seem like a lifetime, even though it will only be a few days. In between, scanxiety rules.

I talked about this in counselling yesterday. The rational me knows that the scan itself doesn’t change anything. It simply reports. It doesn’t affect the efficacy of the chemo. It just informs. So it’s silly to get too worked up about the scan. But that’s my brain talking. My body is saying something different. My body is finding new aches and pains, new ways of telling me it’s feeling on edge. And in the fight between body and brain on the battleground of scanxiety it’s not easy to pick a clear winner.

So I am picking my tools for the psychological fight. Deep breathing. Lots of rest. A good measure of distraction through work. Contemplation. Prayers and positivity from others. The love and companionship of my husband. The humour, support and mental strength of my sisters in arms in this awful fight (I love you all). These tools will help to reinforce my mental strength and tackle the scanxiety face on.

The best possible version

Elliot and I often talk with Tali about being the best possible version of herself. As she is only just 7, this is probably a bit hard for her to understand. What we mean is that there are times when she is amazing – mature, kind, empathetic, questioning, interested, sensitive, calm – and times when she is less so and we want to encourage her to be the former more and the latter less. We tell her how much we love the best possible Tali and what a great person that version of her is. That’s not to say that we love her any the less when she acts like a regular 7 year old, but just that we think the best possible Tali is simply amazing.

Being the best possible version of yourself was a theme that my wonderful rabbi also touched on when I saw him last week, and something he focused on in his sermon in shul (synagogue) on Saturday morning. He was retelling the story of a journalist who had given a talk to the community last week about his experiences as a hostage in Gaza. This guy had apparently been kept in isolation for several days before the men who were detaining him came and grabbed him and threw a hood over his head. He was certain he was being taken to be killed and remembered that his rabbi had told him that we are all put on earth for a purpose, even if we don’t know what it is. We will not die until we have fulfilled that purpose. We should therefore live our lives as the best possible versions of ourself to try to ensure we fulfil that purpose as well as possible.

The story really struck a chord. I certainly don’t know what my purpose is. It could be any of a number of things. Before Genghis I was very focused on my twin responsibilities of family and career, but I have come to realise that these may not be the only things I am here for. I may never know and so I must try to do everything in the best possible way.

In the past few days two people in particular have been a real beacon for me in this quest. They have not only shown me the best possible versions of themselves, but they have given me the opportunity to be a better version of me, by teaching me how to accept with gratitude and how I don’t have to be the controller in every relationship.

I’ve mentioned my amazing sister in law before in this blog. She is an incredible person. She is so giving and generous with her time, energy and love, not just to family but also to a wide circle of her friends. I am able to deal with Genghis and its complications so much better because of her support. This weekend she was simply wonderful, yet again. Tali had an ice skating party. Debs not only went on the ice (which lack of energy prevented me from doing), but looked after a number of the little guests, making sure they were happy and having fun. After the party she took Joey off so I could rest up with Tali and have some quiet time. Then she came back and looked after both kids for the rest of the day. When I thanked her for being so fabulous, she turned it round to thank me for letting her spend time with the kids. This is one amazing woman.

The other person who has inspired me this week is a semi-stranger, one of the many mums from my Facebook group of mums. This lady offers reflexology to cancer patients and has been kind enough to treat me twice before, simply out of the goodness of her heart. She offered to come to my chemo session yesterday. I accepted, thinking she was on a break from treating others in the same building. I was wrong. She was on a morning off, but nonetheless came to treat me while I was in the chair. She told me a little of her own story, which is not for me to share, but suffice to say she is going through major personal turmoil at the moment. She refused to take any money and insisted I tell her when I am next in chemo so she can come again. Pre-Genghis Rosie would have insisted on giving something back, but I am learning to accept the generosity of others. She has given me the gift of her skills and time and I accept with sincere gratitude.

So my aim now is to be the best possible version of me, in every way. In the subtle ways as well as the obvious ones. In accepting as well as giving. In thinking as well as doing. And in that way I hope that I will fulfil my purpose in the best possible way.

Big shout out to…

Here are the people in my thoughts and prayers today.

Penny Hampson. Please keep fighting, beautiful lady.

Jojo Gingerhead. Fingers crossed for you at the Marsden today.

Louise Nicholson. Let’s hold hands virtually, and weather the SEs together.

Sarah Perry. Because you rock, dude!

Andrea and Cinzia. Just because I love you.

Jo Fine. Always my BC twinnie.

My beautiful Tali. Keeping everything crossed for your interview later.

Mum and Dad. For demonstrating that I’m really the product of both of them, by sending me crappy jokes about soup. LOVE the combination!

My handsome Joey. For sleeping well last night (even if the bloody steroids kept me awake).

My amazing husband. For just being there.

All the YBCN ladies, fighting together.

All of the lovely friends and strangers who have sent me such beautiful wishes.

Accepting help, rejecting scepticism

I’ve never been all that good at accepting help. My dad delights in frequently retelling anyone he can (hi Dad – I know you’ll be reading this!) that, aged 2, I got out of my buggy, went round behind it and insisted “Roro push”. Even at that tender age, I wanted to be doing the do, not being helped.

One of the things that my current situation is teaching me is to unlearn that behavioural trait. It ain’t easy. It feels like it’s hard wired. I don’t ask for or accept help. I give help. Until the day that Genghis arrived. Now I have to unlearn and relearn. So many people are now involved in helping me. Number 1 is my darling and wonderful husband. For the first 10 years of our marriage (almost) it felt like we helped each other and accepted each other’s help more or less evenly. There were times when that balance swung one way or the other, but overall we were on an even keel. A partnership. Now I feel that this has been rewritten. Like in our ketubah (our Jewish marriage contract), Elliot does all the doing and I silently accept. It is taking me time to come to terms with this, for all sorts of reasons. I am not the person my husband married and that makes me sad for him. I am not the strong woman he shared so many experiences with. I am leaning heavily on him, and that is no small burden. And when he reads this he will tell me that it isn’t a burden and that he loves me, but I know that things are different now. Not worse, not better, but different.

Help is flooding in from other quarters too and, again, I am learning to accept it. My darling sister in law became our temporary nanny for a fortnight – I accepted her offer without a quibble. My team at work are picking up my slack and again I accept without demurring. The lovely lady who has found spare time to give me reflexology. The prayers from all over the world. Family and friends are pulling together to offer assistance in all sorts of ways. It is a true outpouring of love and one that I am not able to resist.

And with this seismic shift in my attitude to self-sufficiency has come another change. Always the sceptic, I am now giving myself permission to explore those things that my rational brain has hitherto rejected. Religion. Acupuncture. Healing. Counselling. And so on. Not everything helps. Some things remain difficult for me to accept. Other things start to seem less unbelievable. Don’t get me wrong. There is still a loud voice in my brain shouting “Bah humbug”. But that voice is finding competition for the first time in the quieter, calmer but equally resolute voice which says “Maybe”. Maybe this will help. Maybe this is working. Maybe there is something to this. Maybe it is not all within our control. Maybe there is something stronger, more mysterious, more powerful that can help. Of course, I need the doctors and the drugs. But maybe – just maybe – there are some other pieces to this puzzle.

And then I start to see how the two factors are working together. By allowing myself to accept help and by realising that I am not a fortress, I am also realising that help comes in all shapes and sizes. It is not just the obvious things. It may not always be tangible. But my mind is now open to accepting help in any form. I will give anything a go. For all my self confidence and feeling that I know best, I now know that I don’t. So I am giving myself over to the doctors and the nurses and the pharmacists and the family members and the friends and the rabbi and the prayers and the healers and the complementary practitioners and I am asking them all to help me, please.

Angels

I am sitting hooked up to the “chemo machine” – the pump that delivers my drugs directly into my veins via Cath (my portacath). The noise of the pump will be one that haunts me, rather like the noise of the foetal heart monitor during pregnancy check ups, but – for obvious reasons – less pleasant. It’s hard to describe the noise but I’ll give it a go – errrrrrrrrrrrrrrrrr ii, errrrrrrrrrrrrrrrrr ii, errrrrrrrrrrrrrrrrr ii – and so on.

One thing in its favour is that it has a semi-hypnotic effect. A bit like lying next to a snoring husband, the sound is annoying but regular. When they infuse the anti-sickness drugs, the combination of the noise and the sleep- inducing effects of the meds sends me into a semi-conscious state, in which I get quite reflective. There aren’t any exact parallels but it’s a bit like a Tube ride home after a long night in the pub – regular sound effects, doziness and a fuzzy feeling.

In that state (and even before I get there) there is one constant thought – that the team of chemo nurses who look after me are my angels. With the help of the meds they even develop a halo-like glow around them. These women are genuinely incredible. I don’t have enough adjectives to describe them. Yes, they are kind and caring, sweet, supportive and excellent at their jobs. But there is far more to it than that. They engender a feeling of complete calm and trust. I feel like a child, completely safe in their hands. I give myself over to their care completely. They radiate goodness. They embody the caring spirit. Nothing is too much trouble. I admire and respect them hugely. I thank them from the bottom of my heart.

‘Fessing up

This morning I ‘fessed up to the kids about the recent developments. I thought it was going to be awful but in the end it wasn’t. They provided us with the perfect opportunity – they both woke up early-ish but after a good sleep, they were relaxed and they were in our bedroom playing on the bed. It was a good environment for breaking the news.

Tali immediately started to cry, which made Joey cry too, although I really don’t think he understood very much at all. She told us she was sad and very worried about me, and I emphasised that it’s fine to feel both those things, and I feel them too, and that it’s ok to cry. I told her that if she wanted to help me then she should talk about how she is feeling and not keep it inside her, or she could talk to any other grown up or her friends. I asked her if she’d like to write down how she’s feeling and/or do some drawings if it is hard to talk about and she said yes, so she has a special notebook for her feelings (which she is happy for me to look at) and she wrote something in it this morning. I’m going to encourage her to keep writing and drawing.

So that’s done. Big relief.

On a separate note, the guy who hit my car also ‘fessed up and admitted liability – unwillingly, apparently, but his insurance company advised him to on the facts. I had started to doubt my own judgment and memory – it was making me feel quite stressed. Thankfully it’s sorted, the car is in the garage, and I no longer see the car driving into me when I shut my eyes. Second big relief.

The third confession happened in my counselling session this week. For the first time I consciously acknowledged the fact that I had been obsessing about imagery of the Jewish cemetery. Going to the funeral at the weekend hadn’t helped with this, although to be honest it hadn’t made things worse (except that being there had been very emotionally stressful). Talking about it made me realise how much I’d been dwelling on it. And now – thank goodness – it’s starting to recede.

Three confessions. Bad things come in threes. So no more, thank you.

Bad luck

I’ve been thinking about bad luck a lot in the last couple of days.  I’m not particularly superstitious, so I don’t really believe in “luck” as such, but I do seem to be suffering from quite a lot of bad luck at the moment.

This train of thought kicked off primarily because of conversations about genes and their role in cancer, and diet and its role.  Diet first.  There is a whole industry out there aimed at selling diets to cancer patients, along with people who swear by particular diets and who happen also – surprise surprise – to be selling a book about it.  If you were to believe all of this, you would end up a raw vegan who never drinks alcohol.  Dairy, red meat, sugar, chocolate, caffeine, booze, most fruit – these are all out.  You have to drink green juice.  Lots.  I wish beating cancer were this easy – although it would be pretty miserable.  Some of these people try to suggest that there is a huge conspiracy out there, hiding the secret way to beat cancer and forcing you to have chemo, radio and so on instead in the knowledge that you will still be sick. The conspiracy is apparently run by the government and the pharma companies.  I get the anti-big-pharma piece, but not the government – surely it is cheaper for the government to tell us all to drink green juice than it is to fund treatment through the NHS??

I do believe, however, that cancer is in large part down to our genes – and therefore to bad luck.  A couple of days ago a good cancer friend found out that the reason she and three generations of women before her have had breast or ovarian cancer is down to a faulty gene called PALB2. Nothing she did or did not eat, do or inhale – just bad luck in her genes.  A day later, some Cambridge scientists published some research which indicates they have possibly found a genetic cause for triple negative breast cancer – the type I have. This is the bad type of breast cancer.  It is aggressive.  It means that the targeted therapies that have been developed for hormone-positive breast cancer (Tamoxifen) and HER2+ breast cancer (Herceptin) don’t work on my cancer because it is hormone negative and HER2 negative.  Triple negative isn’t so much a type of breast cancer, as an absence of other types of breast cancer.  So the news that scientists may have discovered a gene that seems to account for 8 in 10 cases of triple negative breast cancer is great news indeed – for knowing what causes it is the foundation for developing a therapy that treats it.  Hooray.  My bad luck to have developed triple negative breast cancer.

And then I look back at the past few years and at all the health crises we have been through – and each of them is another case of bad luck.  Bad luck that Tali has the incredibly rare abdominal situs inversus (though incredibly good luck that it is self-correcting).  Bad luck that Elliot developed severe pneumonia and pleurisy that left him slightly weaker in the lungs even now.  Bad luck that Joey inherited two defective copies of the Connexin 26 gene and so is profoundly deaf (though wonderful that cochlear implants help him to hear).  Bad luck that during Joey’s cochlear implant operation a piece of medical equipment was left in his head (although more fairly this was human error – but bad luck that this particular human error happened to us).  Bad luck that Tali didn’t start breathing again on her own after a routine grommets/adenoids operation – due, as it turned out, to a genetic inability to metabolise the anaesthetic she was given (although good luck that we found out before Joey had his cochlear implant operation, as we had him tested and he too can’t metabolise the same drugs).  Bad luck that I developed triple negative breast cancer.  Bad luck that chemotherapy didn’t work and the cancer had the chance to spread.

And bloody bad luck today – when an idiot crashed into the side of my car.  I’m fine – not injured – and the car is repairable – but more bad luck.  And I’m just cross.  Cross that it was MY bad luck yet again. How much more?

Please don’t get me wrong – I’ve had a lot of good luck in my life too.  Lucky to have had such a wonderful childhood.  Lucky to have had such a wonderful education.  Lucky to have met and married such a wonderful man.  Lucky to have fallen pregnant twice without difficulty and to have had two such wonderful, brilliant, amazing, adorable children.  Lucky to have such a good job that I enjoy so much.  Lucky to have a beautiful home. Lucky to have such a wide circle of amazing friends. I really do appreciate all of these things.

But I also feel that I have had more than my share of bad luck.  So I am now hoping and praying and focusing on that bad luck coming to an end, on the coin flipping, on the universe getting on my side, on the chemo working, on having some good health news for a change.  Fingers crossed.

Life and death

Over the last few days I feel like I have been very aware of both life and death. That sounds incredibly melodramatic and it hasn’t been, so let me explain why I said it.

Some of my experiences in the last couple of days have been truly life-affirming, albeit in a low key way. Tali sat an entrance exam for Highgate School on Friday. Coincidentally I found my old box of lucky charms in a drawer the evening before, so she bounced off to the test with her pocket full of the little knick knacks that used to come with me to exams. In a very small way it felt like a piece of the circle of life. Listening to her enthusiasm for writing a story, and thinking about her future if she is offered a place, threw me back to my time in her shoes and made me smile at the similarities between us. No matter what, I have fulfilled my genetic imperative, as my DNA has clearly been passed on to my beautiful girl. I have continued to receive a flood of supportive and sentimental messages from all quarters – old friends, newer friends, Facebook friends and others. The cancer presents keep coming too (the postman must surely be wondering what’s going on!) with some really thoughtful things arriving from unexpected quarters. My brother has brought his wedding forward to March and he and his fiancée are in full on planning mode, leaving the ladies of the family in full on dress shopping mode. Tali has already picked out a flower girl dress (now we need to keep our fingers crossed that the happy couple chooses a colour theme that allows her to wear that dress!) and I have ordered a mini tuxedo for Joey which will no doubt make him look even more munchable. And to top it all off there has been a steady stream of crappy jokes being sent to me – for which many thanks.

But – as the saying goes – in the midst of life we are in death. A very special elderly lady passed away on Thursday night. The grandmother of a friend, she was a beautiful, elegant, kind and sweet person who has been ill for some time. This morning we are off to the funeral. I can’t help thinking – will the next time at the cemetery be my funeral? Should I pause for a moment there to take it in and try to imagine what it will be like with my family and friends as the mourners? And sad sad news about two girls in my online support groups. One, with secondary breast cancer, has just been diagnosed with another form of cancer too. Another, with no secondaries, has been in hospital for a week in crippling pain, unable to see or look after herself. Her head and neck CTs are clear but doctors suspect cancer cells are in her spinal fluid – if so, it’s terminal. To say that it is unfair that either of these girls (and I mean girls – both in their 30s) should have to go through what they are facing seems like a very poor understatement. I feel like I have sadness leaking out of me at times, a thick, viscous, grey fluid that saps the colour out of everything it touches and renders me heavy limbed and unable to concentrate.

I feel like a dial within me is being turned up to the maximum. I am feeling everything more deeply and everything is taking on a greater significance than before my diagnosis. Small things seem big and big things seem dramatic. It’s intense and exhausting.

Getting there

Yesterday two things happened that helped my mental and emotional state enormously. I had my first counselling session and I had a long chat with a dear friend whose mum died when he was only 7.

I’ve always been a bit dismissive of counselling and other talking therapies, but something happened to me yesterday morning. I’m not quite sure what it was. My counsellor is a lovely lady who let me talk about how I’m feeling, the sh*t that we have faced in recent years around health issues and other such stuff. She said some things back – not all that much that I hadn’t already heard although some useful perspective. But looking back I think it was one thing that I realised and expressed for the first time to her that has been particularly important. This thing that I’m going through, this trial that my loved ones and I are facing, makes me feel so small. I feel tiny and powerless. Yes, it’s a lack of control, but it’s more than that. There is absolutely no possible way of controlling this. There is absolutely no way that I can employ any talents or skills to direct the outcome. And that makes me feel small. Shrivelled. Turned in on myself. And for the first time, it’s ok to feel small. To acknowledge that I am a tiny dot. Because we all die. All of us. And no one ever wants to die, but we do and we are gone, and our smallness disappears and that’s it. Being small and powerless is ok because the biggest thing that happens to us after birth – death – makes us all small. No one can stand tall and defy death. We are all humbled by it. We are all made small by it.

And for the first time I feel ok about not being able to control when I die. It will happen. At some point. So the key thing is to enjoy living while I can. To live tall. To stand up and face life and embrace it and appreciate it. I may be powerless in the face of death but in the face of life I can be a giant. I can make each day how I choose. And it’s so much better if each day is one during which I am at peace, rather than being so stressed about being out of control about death.

That’s not to say I am completely ok now. I’m still sad. And weary. And trying to find my strength. But I have started to find some peace. Realising that death is always going to come and is never going to be welcome has helped quite a lot. So let’s get on with the living.

And my chat with my friend. I needed to hear his experiences – that his mum never left him, or his dad, or his brother. That her death has never been ok but has become part of their story. That he has learned to live with it and build his life, not in spite of it but with that loss as a part of who he is. That my husband and kids will find a way to live without me. That the kids will grow up and have functional lives and jobs and their own kids, still missing me but able to cope. So however long I have left, I need to use it to make memories with them that they can carry with them.

From the deep to the trivial – I’ve been sent so many jokes since my last blog entry. I have a fairly crap sense of humour so all of them have made me laugh. Top prize so far goes to my lovely friend Emma who sent this gem:

Q: How do you turn a duck into a soul singer?
A: Put it in the microwave until it’s bill withers!