Control

I took this photo on Sunday in Regent’s Park. I don’t know why it makes me think about both control, and the lack of it. But it does.

Losing control is a big issue. I am someone who has what I suspect is an overdeveloped need to find solutions, make plans, and be in control of my life. A therapist once described my approach as an example of Strategic Survival Personality, due to my childhood separation from my parents at the age of nine, when I was sent 5000 miles to England from Guyana toacquire a ‘good British Education.’ Whatever. I am who I am. Strategic survival doesn’t sound too bad to me. Except now it’s proving a struggle to identify the right strategy.

Suddenly, I feel as if I’m free-floating. Travelling in unchartered seas without a compass or passport, and with destination unknown – totally unprepared. I try to process these emotions as best I can – in other words, I feel as if I’m lost and drowning at times.

Then there are all these neurological symptoms that have suddenly appeared. Some random cognitive impairment (memory and sometimes getting words tangled up in the mental spinner, accompanied by extreme fatigue and insomnia.) Next, the extreme headaches at the back of my head that are worse when I lie down. An almost total lack of appetite and constant nausea, accompanied by a weird dizziness where I feel as if my central sense of gravity disappears. This symptom seems to be postural affected. Day before yesterday I was stumbling around M&S like a drunk woman, not quite able to stay upright without holding on to a fixed item. ‘Are you alright?’ they kept asking me? Embarrassing or what!

Just as well I laid down some blubber over the summer whist in my new house in Cyprus – eating out every day with all that food and wine. I also developed a predilection for those delicious little bourekia – little parcels of flaky pastry filled with sweetened cinnamon-flavoured Anari (soft cheese). After four months of this lifestyle, I did put on some kilos. Now, I watch the rapid weight loss with slight concern. So far, I still look okay and only I know that I need a size smaller. But it follows, if you don’t eat, you must lose weight. This is not good for pre-op preparation.

My bin is full of food – uneaten and discarded. My fridge has become the waiting room for bin-death. The good thing though, I don’t have cancer in my brain that might cause any of this. The MRI has shown this conclusively. One theory is that these neurological symptoms could be the rather uncommon Paraneoplastic Syndrome that is attacking my nervous system. The cure for this is to remove the cancer as soon as possible. Fingers crossed on that one. Another medic friend asked me whether anyone had considered POTS. What do I know!

I’ve started to make lists of what I see as ‘certainties’, problems and potential solutions. I have no idea why, but in some part of me there is some small comfort in this exercise. I suspect there is an illusion of control here.

What I do know is: wide excision surgery (lumpectomy) and removal of Sentinel nodes on Thursday 2 December. Assuming this operation is successful (national figures are 1 in 7 will require further surgery at this stage,) I will start a 5-session radiotherapy programme 6-8 weeks after surgery. The third prong to this treatment approach is 5 years of hormone suppressant therapy.

The unknowns are of course a rather longer list. Will it return – maybe in the left breast, or indeed elsewhere? Are they sure it isn’t already in the other tit? I am feeling similar pains in that one and under the arm. I know they performed a mammogram of both, and the left appeared clear. Suppose they missed something? Is that even possible? It must be, since I had not thought that I would have cancer in either breast. I missed that one. But I tell myself that I’m being flagrantly neurotic here. What I’ve learned is that this is my entry stage into the territory of the unknown. For someone like me who likes control, this is a steep learning curve.

Of course, the biggest set of unknowns are how I will feel emotionally about my body and sexuality. I wonder how I will respond to all the changes that the radiation and medication will have. Even though I know these worries are not of the same order as staying alive, I do still think about whether I will feel like a woman and all that goes with that. I know that some might think

I should be past all these considerations, but I’m not.

I know there is no right time to get cancer of any kind. I also think that mine is mild in the grand order of this disease. For that I am grateful. But what bad luck for it to happen when I am alone and had just started getting my life back together after my husband’s death. Just a few months ago I dipped my toe back into the dating scenario and signed up for a series of dating agencies. I’m not seeking a life partner again, but someone to have some fun, romance, sex, companionship, and adventures with. But nobody chooses to have breast cancer – or indeed any other form of cancer. Will I ever have the confidence to take my clothes off in front

of anyone else again, and will I even want to. I gather that these drugs are libido-killers, so maybe it won’t matter.

All that trivia notwithstanding, what I’d really, really like now is simply to be held by someone who cares for me and for whom I care. Just to feel the warmth and affection of another body next to mine. This is not the same as sex. Right now, cancer itself is a libido-assassin. It feels very lonely from where I sit.

I’m sorry if this blog post has been so depressing. Trust me, I’ve tried to find something funny and entertaining to write. I could make it up, but I’ve vowed to be authentic in everything I write here.

What I do say to everyone is: check your tits. Get familiar with them and make sure that someone takes notice of you if you think there are any changes from your nNext post will be about music. After all, I must be true to the blog’s name. Cancer will not stop my music – even if I forget a few notes!