I first came across “anticipatory grief” whilst friends with Sarah Illingsworth, who had metastatic breast cancer and was a Trustee for Breast Cancer Now. She was bold and forthright and did not shy away from saying just how metastatic breast cancer (MBC) was affecting her.
And so here I am, after 10 years living of with this awful disease, thankful I’m alive but living with all the anticipatory grief that you live with when you have MBC.
I guess this story starts all the time with friends, friends with MBC who talk about how they feel and how things upset them, because as we know, no one really understands this disease like anyone else living with it.
MBC can massively impact even the most rock-solid of relationships. The stress, distress, upset, worry and anxiety that living with this disease brings, often takes you to breaking point and this isn’t just once, this is many times over, living with the rollercoaster of scan, treat, repeat in three monthly cycles, where one minute you are whooping and living your best life and the next, you are screaming, crying, angry and irrational at the slightest thing as you are on edge with worry and crippling anxiety.
This tests any relationship, then throw into the mix whether you are working full or part time, whether you have a young family to look after, whether you live alone, have teenagers to deal with, whether you have elderly parents to look after; sometimes it just seems easier not to go on and I’m sure dark thoughts enter people’s minds at some point or other, no matter how rational the person is.
Then, for example, take my friend, whose husband just didn’t know what to say or do but she found him asleep, having been watching porn he found on late night TV one night after he had come home from a boys’ night out. Now it doesn’t take a rocket scientist to know how this woman felt, she had lost a breast, lost her hair, had a life-limiting disease and felt nothing like herself, whilst still being a mother to her two young children.
Another friend, who found out that her husband had been texting a work colleague one night when she noticed he seemed different and messaging on WhatsApp. Subsequently, she found out that this had been going on for several months and he even had a necklace with her name sent to the neighbour’s house that he collected and gave to her. She only found this out by noticing that Etsy was showing photos of necklaces that she certainly hadn’t looked at and, going into his account, he had written to the company saying how excited he was to give this “special friend” her necklace but to change the delivery address.
Sadly, I hear far too many stories of how we women are constantly let down by men’s inability to understand how we need to be supported; we deserve so much better than this. I simply don’t understand how difficult it is to realise that all we really need is basic; love, support, empathy and understanding.
Simply put – women do not want, nor need, anything more than this; hugs, care, love and affection, when they are going through the most upsetting, physically demanding, emotionally turbulent time of their lives, trying to live without the pressure of feeling like they are not enough to their partner. It does seem like men really are from Mars, if all they think about is sex and that’s what they think will keep a relationship together.
The main reason I am writing this is another issue which arises time and time again. Too often, we witness our beautiful friends die, we see and feel the abject grief for them, then for (some) men, we see them move on to new relationships, some sudden, some not so sudden – the haste in which some men move on can be offensive to say the least. I guess you will say, well that’s nice and he deserves to be happy….. Yet it feels like I am living in a parallel universe, watching this going on and saying “Ah, I’m so happy for you”, yet deep down, this kills me. It kills me because it is what I see could happen if I were dead. I do not want anyone else living my life, being with my husband, being with my children, in our home, enjoying the fruits of my labour and what we have worked for together, for over 40 years. Retiring together, seeing my children get married, have their own children, the grandchildren I will not see. All the moments in life that I may never see, I cannot explain enough how much it really hurts and makes me very, very sad. There is a sadness that we patients have to deal with, that no-one else acknowledges nor talks about. I just cannot brush it under the carpet, because it festers and is as malignant as the disease itself.
I attended a large conference a few years ago and a man was interviewed on stage as his wife had died of MBC and the person asking questions knew he was in a new relationship and she said, “So you’ve had sex?”. There were patients visibly upset, two I know walked out. My friend came over to me, shaken by this. She died a mere three months later. Some professionals extolled what a breath of fresh air that was to discuss this intimate and immensely personal matter. It was a shock, a bit like not understanding how the end of treatment bell affects metastatic patients’ mental health. There are some matters that really do not need to be discussed or celebrated in such open forum. Patients should receive support in the right way to deal with these constant, oppressive thoughts.
Anticipatory grief – grieving over the things that you are going to lose or may never experience. Something I can never overcome nor accept.
Jo
