So not right

February 2012. Flying to New Jersey to say goodbye to Rach.

On the way home from New Jersey I find myself in a window seat next to two British women on the plane. They were sitting in front of me on the way over and I remember them, they are happy, laughing, enjoying themselves. The inevitable ‘what did you do?’ conversation ensues. They’ve done ‘everything’ in New York, having travelled over to see Barry Manilow in concert (does he still play I wonder to myself, although the women tell me he wasn’t well and the concert was cancelled.) So when it’s my turn I just say I went to a funeral. ‘Oh,’ they say. ‘My friend died,’ I say. ‘Of breast cancer,’ I say. They look at me. ‘How old was she?’ they ask. ‘Forty-one,’ I say. ‘Oh,’ they say. ‘It fucking pisses me off good style,’ I say. I don’t mean to swear but I’m so angry. And all this last week I’ve been having very short conversations which punctuate very long silences which consist of few words, ‘This fucking sucks.’ Because it does.

I look out the window. The runway, we’re moving out now. ‘American?’ they ask. ‘No,’ I say, ‘Australian British.’ ‘How old?’ they say, again. ‘Forty-one,’ I say. ‘Yes, we know a girl‘, they say, ’27,’ they say, ‘with a daughter. Yes, she left a daughter behind.’

Oh, I think, so that’s worse than Rach is it? Younger. With children. It’s a competition for pathos is it? So a 41 year old women dying of breast cancer is somehow acceptable? Or not sensational enough. I don’t say any of this, I just haven’t got the energy to start a discussion right now.

The conversation limps on and the two women mention seeing something about the Avon walks in New York. Hanging in the air is the message that it’s all being sorted out. That these deaths won’t happen again. That the charity walks will change all this. I don’t have the energy to challenge these women, to spoil their holiday. But how does Rach dying fit in with ‘surviving breast cancer’, the culture that doesn’t have space for the dead?

Selfishly I don’t want to find myself 36,000 ft above the Atlantic sobbing into my pillow. I don’t want to hold the mothers of my friends and comfort them. I don’t want to witness a family torn by grief, a husband blown apart by the death of his beloved wife, far too young. I don’t want to be writing tributes for my friends in their 40s and attending services for them. I don’t want to lose my friend. Of course, all of these things have just happened, and all that I’ve done to help the people directly affected by Rachel’s death has been done lovingly and willingly. But I still wish none of it had had to be done. Selfish me. I can hear Rach saying to me, ‘We’re all too young for this cancer crap.’ Yes, cancer crap it is.

I think back to last Monday, the day Rach died, the day I found out. That feeling of receiving news that’s like 100,000 watts of electricity shot directly into my heart. That I reeled backwards on the cathedral steps and was forced into sitting down on the cold step, unable to move even when I could feel the damp on my skirt. I couldn’t breathe. It can’t be happening. It can’t be true. That the day that started so normally with me taking the last pair of knickers off the drying rack and going to my piano lesson. Later that day I wrote in my journal, ‘Rach died last night.’

But there we have the reality of breast cancer. Death. Progression of disease that sneaks its way around every drug we have. Disease that behaves aggressively, silently, creating havoc. Stealing my friend. I always knew I would lose Rach to breast cancer. That’s the reality of making friends with someone who has Stage IV disease. We both knew that. We both knew we’d have to ‘go down the rabbit hole’ together – that was her expression. I just never thought beyond the point where she didn’t come out. But I do get to come out. Blinking into the sunlight.

Here’s my life back in Liverpool. The card she sent me on my desk still, which says ‘Not long now dear one, love Rachel xx’ – for our planned weekend with our ‘sisters’. Her handwriting done with her right hand (she was left-handed) as she’s lost the use of her left hand, always made me smile, appreciating the effort she’d made to write even a short message and my address on the envelope. Now my desk is full of paper from Rach’s service, the scripts I am compiling to create a document with all the words for Rach, and the film I have started editing. Now the weekend with our ‘sisters’, my cyber sisters who were going to get together, will not happen in March. The Seville oranges and limes are in the shed, ready to make marmalade, suspended from where they were in the kitchen over a week ago. When life was still ‘normal’. When this month I would make marmalade, when next month I would travel to New Jersey to meet with my cyber sisters and have fun together. With Rach.

This is so not right. I am so angry.

Rach was my dear friend and fellow blogger over at The Cancer Culture Chronicles. She died on 6 February 2012 of metastatic breast cancer. She was 41.

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39 thoughts on “So not right

  1. Dear Sarah, you’re right, death is wrong, for anyone, young, old, friend, parent, loved one, its one of the major things wrong with life, for me its not that we have to die but that others are left behind to mourn our loss. I didnt know Rachel but too many die from this dreadful disease…hx

  2. The message that it’s all being sorted out…that part gets me. Those who don’t know this disease intimately seem to believe that it affects a small part of your breast, then you wrap yourself in a pink ribbon and live happily ever after. It’s so not right. I love the note from Rach and know what a treasured gift it is. She’d be very proud of you. xo

  3. Sometimes only vulgarity is appropriate (stupid fucking breast cancer, cancer crap) because it is just not right.

    I hope you still make the marmalade, that you are able to have some patches of ordinary during this period.

  4. Beautifully poignant posting here, Sarah. All of these deaths are senseless and have a ripple effect on everyone. Nobody should have to die of cancer. Period. It infuriates me when people do comparisons — as if leaving children motherless is worse than leaving a husband wifeless. It all sucks. It’s all tragic.

    I was friends with a Stage IV woman whom I write about in my blog. I helped take care of her, and I knew one day she would die. I still grieve for her, even though it’s been seven years since her death.

    • Yes Beth, senseless – that’s exactly what this is, senseless. To me, this is personal, and it HAS to mean something, to change something, to make us think again about the whole culture of breast cancer.
      I’m sorry to hear about your friend, I remember you mentioned her before… and sad that you still grieve her. I think I will grieve for Rach for a long, long time to come.

  5. I keep getting angry, I realise its wrong though. My co-worker told me her younger brother died several years before and its all awful isnt it, but we must get on with work now……..I almost exploded that I didnt care about her younger brother and about her inane bullshit, but I bit my tongue and carried on. Of course its awful and its not inane but its the way my ears wanted to hear it……that someone else didnt understand. Perhaps I missed the point completely and they did, I really have no idea anymore.

    • Hello Peter – I’ve always felt anger was a valid emotion for cancer. If we don’t get angry then will we just accept death, accept dying too young, accept the reduced quality of life due to treatment…. NO, we must be angry and use it as a lever for change. Stay angry. I will, and will honour the memory of your sister.

  6. It’s so hard for those outside of the breast cancer circle to truly understand the magnitude of the suffering and heartbreak or the degree of our frustration and anger. You were a dear friend to Rach and she to you and that bond will always be with you, and it has seeped into each and every one of us. Some how, some way, this collective power will make a difference. Rach has made a difference. We will see to that!

    XOXOXO,
    Brenda

    • Yes, Rach is (was? I find the past tense impossible to use sometimes) two year’s younger than I was at diagnosis. And she’s been dealing with breast cancer for eight years. So not right, so absolutely not right.

  7. Just now hearing about lovely Rachel as I’m new to the BC blogosphere and am in the midst of my 3rd %$#&ing BC diagnosis. She was clearly a warrior as are you, her family and her community. My heartfelt blessings to her family and to you as a sincere friend and ally as you keep her legacy moving on. Thank you for this candid, in-flight article. I hope your marmalade turns out to be the very best ever!

    • Hi Dee Anne… thanks for reading and commenting. Welcome to the blogosphere, and so sorry you are dealing with BC yet again. Marmalade will be a good distraction. Best to you, Sarah

  8. This is so painfully powerful, Sarah. All of the grief and horrendous reality of our 41-year-old friend dying from this wretched disease. Yet, “Hanging in the air is the message that it’s all being sorted out. That these deaths won’t happen again. That the charity walks will change all this. I don’t have the energy to challenge these women, to spoil their holiday. But how does Rach dying fit in with ‘surviving breast cancer’, the culture that doesn’t have space for the dead?” That’s really the crux of the matter, isn’t it? All that’s wrong with pink ribbon culture and its pretend solution to the problem of breast cancer? Hard to bear. Something we must continue to fight, on behalf of all of those we’ve lost and all of those we will lose until and unless there is fundamental change. It’s time to remove the feather boas and party hats. This party is over.

  9. Oh, Sarah, this was so hard to read. I can’t believe the insensitivity of those who would minimize Rach’s death by mentioning someone dying who was younger and had a daughter. As if that was somehow more tragic. It’s so difficult dealing with the public after such a private, touching affair in New Jersey. Too bad so many don’t “get” it. That’s why we have to keep writing, keep educating. I look forward to seeing the video you are putting together. XOXO

  10. You’re right–it is so not right. It is so not right–I wish I had other words. But in terms of your feeling frustrated and letting f-bomb fly? It’s healthful for those with cancer to express their anger–why not those in its path? Keep letting it fly–it’s so not right.

  11. Sarah, this was so rich with thought and feeling and love!

    Anger is a great emotion. I am not in touch with it enough. But it’s healthy. So. Very. Healthy. It’s motivating and a great stress release.

    I have experienced your plane-ride conversation before, when talking about my cancer with other people. (Some who know me very well, in fact.) Who don’t get that cancer is cancer. It’s not a competition. It’s an opportunity for compassion.

    What non-cancer folks don’t get is that any one of us can have our Stage pulled out from under us in a flash.

    I don’t even know what I’m trying to say, except that I loved this post and I’m encouraged by your anger and I think Rach would expect nothing less than the whole lot of us getting good and angry about the state of breast cancer in the world today.

    Harnessing it for good.

    Where’s my horse!

    • Oh yes!! I think we’ve all had a version of ‘that’ conversation and you’re right – it is an opportunity for compassion, but often doesn’t happen! Thanks for your comment…. where is your horse?!

  12. Pingback: Weekly Round-Up « Journeying Beyond Breast Cancer

  13. Hi Sarah,
    I received a condolence card from a relative I haven’t seen in many years. I saw the return address before I opened the card. I thought, “this is sweet, a note from someone who cares about my beautiful Rachel” The note fell out of the card, Couldn’t believe my eyes when I read that a “dear friend of mine just died of breast cancer, just 33 years old” So i thought, this is surposed to make me feel better?! So somehow it almost does feel like a competition. Is this the new condolence, “can you top this”. Really PISSED me off. Say your sorry and shut the fuck up. I care about your friend but this is not the time to mention it cause it sure didn’t make me feel better, just angry!

    • Hi Felicia – I *completely* get how pissed how you must have felt. That’s just so inappropriate right now. But – stay angry! We need the anger to continue to change breast cancer culture – we need all our voices to do that. Love to you and T. Sarah x

      • Hey Sarah, people are so inappropiate especially now. However, the cards I received for the most part brought tears to my eyes. So many people felt compelled to tell me what a beautiful person Rachel was. The ones that only knew her from my telling them about her or reading the obit made wounderful comments about her. Times like this shows what people are made of and of course I have gathered up my “shit list” as Tony calls it. You know, the people you thought would show up or respond and haven’t?
        Hope you are well and best regards to Ronnie.

      • Oh yes Felicia… I have found both cancer and death to be what I call a ‘sorting hat’ (a Harry Potter reference for those who are interested). Like you are finding, some people do not make it through – for whatever reason… and end up on the ‘shit list’ as you have coined it – actually your term had me laughing out loud. Thank you for that. Bet you Rach had a shit list…. ;-)
        Sarah

      • Hi Felicia, thanks for the good wishes. Sorry some people haven’t come through and are on your ‘shit list.’ Some people seem to be so afraid of death, like if they never mention it or come close to it, it’ll never happen to them. Poor little souls.

  14. A friend of mine died after a 23 year battle with breast cancer, a disease she knew too well from watching her mother and aunts die of it many years earlier. We both had been diagnosed with it a few months apart in 1986. When she died two and a half years ago, I had a mixture of feelings: relief that her battle had ended, anger that she did not get to live longer, and guilt for surviving her. A week after her memorial service, I decided to trim an old out-of-shape shrub, but by the time I was done, it had been hacked to the ground. The shrub grew back but into a different plant. I find myself wondering if my friend sends me messages through things like that shrub Or this is just the way I grieve.

    • Hi Rae, thanks for coming by. I think we all grieve in our own way… we just find a way that is right for us. The survivor guilt is something that I understand too. I made the same choices as Rach… and yet she is dead and I am still here. Why?
      Best to you, Sarah

  15. Dear Sarah
    The day before you dear friend died, I found The Cancer Culture Chronicles, where Rachel’s words leapt off the screen and moved me to do something with the rage that has been my constant companion since being diagnosed with breast cancer this past November. I never knew Rachel, and by the time I plucked up the courage to talk out loud about breast cancer on a blog of my own, she was gone.
    I am so very sorry.
    Yvonne

    • Hi Yvonne, well I’m glad you found Rachel’s blog. She was quite simply inspirational in the way she spoke out – and shows us all that there is a place for anger in breast cancer culture. Thank you for your kind comment. We shall all miss her so much, Sarah

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