Hello. My name is Rosie. I’m 37 years old. I am a wife and mother of 2, living in NW London. I am Jewish. I have a double First from Oxford. I am a partner in a City law firm. And I have cancer.
There. Said it. The “c” word. First and last time in this blog. I have named my “c” Genghis. It’s aggressive, moves fast and wants to take over. My job is to repel it. No more “c” word. Just Genghis.
Genghis isn’t going to define me. You’ll notice that it’s the last thing on my list of who I am. Not the first. Not even high up on the list. I’m going to carry on being all of those other things long after Genghis has been vanquished. It will just drop off the end of my self-description and leave the rest standing. In legal terms, we can apply the “blue pencil” test to Genghis. The rest of the person will still stand.
It’s been two weeks since I first found Genghis. I didn’t know what it was then. It was a lump. It felt a bit hard. I convinced myself it was a cyst. The GP said he thought it was a cyst, but best get it checked out. That was a Friday. I spent the weekend convincing myself it was a cyst and on Monday I had a full day business trip, so easy not to think about it too much. But I had enough time to do some Googling. And I’m not thick. I can translate what the internet says into how to assess my own situation. So on Tuesday morning, I was pretty sure. And then I went to see the breast consultant on Tuesday evening, and he examines me briefly, and from his face and demeanour I know straight away that it’s not a cyst. Mammogram (yuk), ultrasound, core biopsy (double yuk) all on the spot. Radiographer says “It doesn’t look benign” (I’d guessed that, looking at the ultrasound picture and applying my Google knowledge). Back to see consultant – he has a “suspicion” about the lump.
So the worst part was leaving the hospital that evening and calling my parents to tell them. I thought my dad would go into meltdown. My mum had breast cancer five years ago, and although she’s fine, he’s still paranoid (about everything, but particularly cancer). But it turns out dad was out that evening, so I get to tell mum first, which was about the best thing about the whole awful situation. And she told my dad, who called me back and was fine. Not great, but fine.
Two days later, on Thursday – a week ago today – it’s back to see the consultant for the results. Not that I had any doubt. He says it is “treatable”. I.e. not a death sentence. Some good news, then. Then there’s to be a barrage of tests – CT, MRI, bone scan, bloods. I have to talk with a genetic counsellor in case it’s BRCA1 or BRCA2. Head spins.
The last week has been even more head spinning. Fixing appointments. Dealing with various insurances. Telling friends. Telling people at work. Going to scans – very nervous for each, pulse racing, blood pressure up. I find out quickly from my consultant that the CT is clear – phew. But then why doesn’t he ring immediately after the MRI or bone scan? Elation to despair and back again. But all in the manner of a swan – calm and collected on the surface, for everyone’s sake. If I worry outwardly, that worry is only going to be reflected back to me in my husband’s face, the faces of my parents and children, so that will make it worse. If I’m calm, they’ll be calm, and then it will all be alright – won’t it?
So today feels like the biggest day yet. The day I find out all my results (except the genetic tests) – what sort of tumour Genghis is; whether it has invaded anywhere else; hopefully a little more information on possible treatment and timing. This is my first big battle with Genghis – the battle for knowledge and for control. Once I have my strategy mapped out, I can go to war with all guns blazing. Today is for battle planning – looking at the map and seeing how and where and when to attack. I’ll need the best generals with me. Then we can go over the top.
Yesterday I found out that my scans were all clear. Genghis is only in my left breast. So already I am winning.
But nothing is straightforward. By way of background, my daughter was born with abdominal situs inversus with levocardia. This means all her abdominal organs are in the mirror opposite position from where they are meant to be but her heart is in the right place. It’s rare. And it’s made even rarer by the fact that she has no inferior vena cava (major vein) and another vein has expanded to take up the function of the vena cava.
And then my son. My wonderful son. He is profoundly deaf due to a recessive genetic mutation called connexin 26. He has had bilateral cochlear implants since a week after his 1st birthday and speaks and talks beautifully. But again, not straightforward.
So it’s really no surprise that the Genghis situation isn’t simple. You see, this is the issue. I’m being tested for BRCA1 and BRCA2 as I am young to have breast cancer and because I’m Ashkenzi Jewish. We Ashkans have a higher than average occurrence of these gene mutations. My mum had breast cancer five years ago and was negative on the genetic tests. My surgeon thinks there is a very good chance I will be negative too.
But. But. My mum’s cancer was triple negative (very simply this means not affected by hormones and proteins). Triple negative is only 1 in 5 of every breast cancer. And guess what. Genghis is also triple negative. Coincidence? Hard to say.
The only reason it matters (and it’s quite a big reason) is that it affects my surgical choices. If I’m positive for either BRCA mutation then it’s a tuppenny all-off (others would call this a double mastectomy). If not, the usual surgery would be a lumpectomy. But what if there is a possibility it’s genetic but not BRCA?? Do I have the lumpectomy and just keep my fingers crossed? Or do I bite the bullet now and go for the tuppenny all-off straight away? My surgeon said he would suggest a lumpectomy and then I can consider my options after chemo. But that might mean two operations when I might just get away with one (the Angelina Jolie option).
So you see, it’s not simple. I may have won the first round but Genghis has thrown a curve ball. I need a bit of time to consider my next move.
This weekend has felt almost like a return to normal now we know that Genghis hasn’t spread. We have been a lot lot lot less tense – obviously. And not all our conversations are about Genghis.
Another nice thing is that friends around the world have been in touch. Some have been sad, some angry (on my behalf) and all have been supportive. There have been some generous and very generous gestures. One of my dear friends sent me an iPod pre loaded with amusing talking books for when I feel awful. And this from a boy! Cakes have been delivered, food offered to be made and childcare offers are flooding in. I have heard from friends who had almost lost touch but for Facebook, from friends around the globe, and from cousins who I only see at weddings and funerals. I am truly feeling the love and thank them all from the bottom of my heart.
Another nice thing is that I seem to be building my Cancer Club already. Sorry if that sounds flippant. When Mum had cancer she found a number of people she knew were also being treated and her conversations with them gave her strength. We called that circle of people her Cancer Club. Now I have one too. Girls from all over who have young families and breast cancer who are only too happy to share their stories and give each other support. There are girls in online fora, a Facebook group, friends of friends and random strangers. Mutual support is key to beating Genghis and, boy, am I going to kick his ass with the amount I’m finding!
So I’m BRCA negative (for the Jewish mutations). This should be good news. It should mean a lumpectomy. This should mean less pain, a shorter recovery, our holiday looks more likely blah blah blah. But the geneticist reckons I still have a 20-25% chance of another primary breast cancer. If I have a double mastectomy I think from what I’ve read that this comes down to about 3%. I’m pretty sure my surgeon will tell me to treat what I have now and worry about the future in the future. And that’s good advice. I don’t want Genghis to spread. But it’s not a particularly enviable position to be in.
And of course, there’s more waiting. I got the results on Thursday evening from the genetic testing. I have to wait until Tuesday evening to see the surgeon again. So that’s another weekend of sitting and waiting and waiting and waiting. Hopefully surgery will be at the end of next week. Hopefully! Who would ever think I would hope to have surgery for breast cancer?
So in the meantime I have decided to do a photo diary of my hair. Hah ha ha! I’m going to do a first shot – before (see below)- then an intermediate shot when I have it cut into a bob. Then I imagine there will be be a shot of it all shaved. And I’m sure several shots of wigs and hair scarves. Then the final slow painful process of growing it back again.
This is all far from joyful but I am determined to get as much fun out of it is possible. I have had the same cut for ages now so maybe it’s time for something new. It would be good to have at least one thing to thank Genghis for.
So it’s arrived. The black cloud. Yes I have lost my mojo and feel down in the dumps. Today is a bit better than yesterday, which wasn’t great. I understand why they call it a black dog. It crept up on me from behind and brought me down in its teeth. I just wanted to cry. Not particularly about having cancer although that was a factor. But just generally I felt sad and low. Yesterday I was focusing on what I don’t want to miss. I don’t want to die before I see my beautiful, intelligent, obstinate, grumpy, wonderful, independent daughter graduate and get married, and excel in her chosen field. I don’t want to die before I see my cute, handsome, cheeky, energetic, troublesome, awkward, fabulous son have his bar mitzvah, go to college and become a man. I don’t want to leave my amazing, caring, pig headed, loving, talented, stroppy, handsome husband on his own. I don’t want to die before I’ve been to Japan or Iceland, before I’ve flown in a helicopter, before I’ve made my professional reputation, before I’ve finished knitting the jumper for my son that I started a couple of months ago, before there is peace in the Middle East, before a thousand and one trivial and huge things have happened.Today I feel less bad but just like I need some space and some time to bring myself back up. I need to remind myself that I am going to do and see those things. That I will hold my daughter’s hand as she tells me she is pregnant for the first time. That I will see my profoundly deaf son graduate from university having aced his studies, alongside his hearing friends. That I will watch my beautiful husband grow steadily more grey and handsome as we share our journey through life together. That one day I will look after my wonderful parents as they still look after me now. I need to focus on these things because they are what will get me through when I feel as physically weak as I felt mentally yesterday. I need to look at the sunshine and know that I will see it for years to come. I need to believe these things. And as I wrench myself out of the black dog’s jaws I can start to believe. It’s me or Genghis. Nothing had beaten me before in life. My competitive streak will stand me in good stead. So today I will let myself reflect. And tomorrow I will believe.
Today is the day I am cutting my hair. I’ve had long hair for ever and today it’s going. I control the time and date, not Genghis. I control where and how, not Genghis. I control the outcome – it’s going to be donated to a charity that makes wigs for kiddy cancer patients – not Genghis. My hair is washed and clean, and come this evening my lovely hairdresser will take a big pair of scissors and – chop – say goodbye to the pre-Genghis me and hello to the new me. The one who is going to beat Genghis. Whip his a**e. With short hair.
So the latest. Genghis is gone, girl. The lump has been removed. Yesterday I had my lumpectomy, or “wide local excision” in medical speak. Plus I had one of my lymph nodes under my arm taken out – call a “sentinel node biopsy”. The sentinel node is the gateway to my lymphatic system. If any stray bits of Genghis have broken loose, they can travel round my body via this super-highway and plan themselves elsewhere, growing into “secondary” Genghises or “metasteses”. This is what we most definitely do NOT want. If the sentinel node is clear of cancer, this is good. If not, the doc will have to take out all of the lymph nodes under my arm and see how many of them are affected. So we keep our fingers crossed.
I feel surprisingly nonplussed by the departure of Genghis. I guess I don’t know yet whether it has got into the lymph nodes. So I don’t know if surgery is done. There is also a chance that the doc hasn’t quite cleared it all out so will have to go back in and cut out some more tissue. I will find all this out next week during my follow up appointment. In the meantime I feel like I’m in limbo. What next – another op or on to chemo? Neither is an attractive option. I should be relieved that the first stage is over but really I just want the whole thing to be over – and that will take a good while yet. Still, I’m able to do a bit of work and a bit of reading and that feels like normal me. Let’s focus on that.
Today is my lovely husband’s birthday. He doesn’t really do birthdays. He has little interest. But he still gets presents and cards – that’s what you do on birthdays.
This morning was the usual. Kids opened the presents while he opened the cards. He liked the cards. He was indifferent about the presents. I thought I’d done well this year getting him a few bits I though he’d like. But general indifference. The tickets to the family outing elicited a vague smile. The DVD box set got a “when do you suppose we are going to watch this? We haven’t watched the other one”. And the accessory for his bread baking fetish got a wobbly “thank you” followed five minutes later by a “not sure I’m going to use this”.
Not that any of this is abnormal for him. But this year I haven’t taken it well. This year I am feeling emotionally wobbly. This year I could have done with a white lie – “thank you, that’s great”. Any other year I would have found it annoying but a bit funny. Yet even though he doesn’t do lying to save people’s feelings – it’s not his style – this year I would have welcomed it. Because this year I am having dark thoughts – what if I don’t make it? What if I don’t get to next year’s birthday? What if this is what he has to remember me by? What if I die and I’m not there to take back unwanted presents?
But most of all I feel sad because I am not responding in the way I would have done any other year. I feel today that fighting Genghis has taken away a bit of me – the bit that would ordinarily make me shrug at this husbandly behaviour. The bit of me that would forget about it. The bit of me that would have got on the bus to go to work and spent the day using my brain, instead of lying on my bed feeling sad. Today is a sad day because today I am not me – I am the post-Genghis me. And tomorrow I know that the post-Genghis me will be back on my feet and smiling and getting on with life. But today the post-Genghis me is stuck in bed feeling sad and sorry for myself and upset that my universe has moved – imperceptibly but seismically both at the same time.