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.
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.
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.
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.
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.
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.
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.
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.
Today is World Cancer Day and Cancer Research UK are using this as a fundraising drive. Research is vital for both current and future cancer patients. This morning I heard about a new vaccine being trialled in the US for triple negative breast cancer. That’s just amazing! It made me cry.
So to all my lovely blog readers – please donate! Just text UNITE to 70200 to donate a measly £3. That would be amazing. Thank you.
At the start of this week I, along with my family and friends and indeed many strangers who are following my progress, were praying for a good result from my scan. I had the scan a week ago, last Friday evening. I had imagined that this would mean me spending the weekend in fear, frozen, paralysed by the anxiety of waiting for the results. Happily, the reality was different. I was able to have a normal weekend (whatever “normal” means, particularly these days) with the family. I didn’t spend every waking hour Googling cancer related facts, nor did I spend the time convinced of impending doom. Even on results day itself, I was relatively calm.
I was quite intrigued by my own reaction. I wasn’t sure whether I had now reached the stage where nothing could seem worse, or whether it was my sub-conscious telling me that the chemo was working. Either way, it was only really in the final hour before my appointment that scanxiety set in.
As it turned out, it was the best possible appointment. My wonderful oncologist had his door open as we arrived for the consultation and waved us straight in. There was no delay and no ceremony as he updated us. The chemo is working. My liver mets had not only stabilised, but shrunk. Initially they looked as if they had shrunk by a little but, but he had calculated that, taking account of the fact that they are spheres, they had shrunk by a half in volume. Happy days!
We then had a half an hour conversation about next steps in which he was good enough to listen to all my questions, consider them and answer them. To cut a long story short, he had recommended 2 or 3 more cycles of the current chemo regime, after which I will have another scan. At that point I might be a good candidate for a procedure called SIRT (selective internal radiotherapy). This involves placing radioactive beads in a major artery supplying the liver. The blood stream takes the beads into the liver where they work on the tumours. David was very happy to consider this and refer me, which is great news.
I left the consultation with mixed emotions. Clearly it was good that the mets on my liver are shrinking. But Elliot and I had discussed the possible outcomes beforehand and, as he had pointed out, even this news doesn’t change the fact that I still have stage IV cancer. No one knows how long the chemo will continue to work for. No one knows how long I will be here for. Elliot certainly didn’t seem particularly happy after the appointment, for those very reasons. I felt like I was swinging between happiness and blankness. After all, the chemo regime is incredibly tough and the scan results meant I am going to have to suffer it again and again.
As the week went on I started to perk up, buoyed in no small part by the delight of family and friends on hearing my news. I felt like I could start to look ahead a little, to plan a little, like I had the right at last to feel at least a little bit positive. Going to work this week has also helped. I have had work planning conversations looking forward to the next financial year and not shied away from them for fear of not being there. I have been able to read good news stories about other people with stage IV cancer and allow myself to imagine that I might be one of them. I have finished some of the tasks I set myself to do things for the kids when I first got my secondary diagnosis and I have put the results in a box in a cupboard, rather than having them sitting out all the time.
And best of all has been Elliot’s evolving reaction. From diffidence on Monday (for the reasons explained above, I hasten to add!), last night and this morning the funereal tone in his voice had gone. This morning he told me he thought I might be back to work full pelt in a year’s time. Team Choueka is now singing from the same hymn sheet! We are both a bit more comfortable to look ahead, to plan, to dare to hope that I might have a slightly longer future than we had previously thought.
But as is seemingly always the case on this long and gruelling journey, the light was tempered with dark today. Prayers at the start of the week, and prayers at the end. This morning I heard that one of my online friends with secondary breast cancer is giving up her fight. She is in too much pain, pain which can’t be controlled. Her cancer is spreading fast. So she has decided to cease all treatment. She has a husband and two small boys and my heart is breaking for them all. I understand and I respect her decision, but I am desperately saddened by their situation. So my prayers today are for her and her family – that they all find peace and that they enjoy her final days together surrounded by love and laughter, making memories for her sons and easing her onward journey. Penny, you will never read this but I hope that somehow you will know that I am praying for you.