Did you sit up when you read that title and ask whether this is a breast cancer blog? If you’ve been following this blog so far, you know how I like a good ‘set up’ piece. Relax, get a cuppa as this is a long post!
Today, 27 January 2022, is the day of my second wide excision operation – re-excision. The first one in December revealed more invasive cancer than shown on the scans, and then a bunch of DCIS which was completely unexpected. So, there was no healthy margin (negative margin) found in the tissue analysed in the laboratory. I decided to go for a staged approach to Mastectomy. This is the last attempt for the surgeons to find a safe margin of healthy tissue without cancer cells of any kind. The odds are not that great, but enough for me to take this decision. At least if I must have a third op in a few weeks’ time, I will know that we tried everything possible to avoid the dreaded Mastectomy – with a capital M.
Sex, Intimacy, Breasts, Breast Cancer – Part 1
That last sentence is a neat segue to the theme of this blog. Over the past few weeks a few friends have contacted me to ask why I hadn’t decided to have a mastectomy straight away. ‘Surely, you’re done with all that now and it would be safer, wouldn’t it?’ Another version of this sentiment is, ‘At this stage of your life, who else, except you, is going to look at that part of your body, so what does it matter?’
What am I to make of these friendly questions? For all I know there might be health professionals who also think this. Indeed, I know this for a fact from the comments of a well-meaning doctor. Fortunately, this is not the view of my breast surgeon.
I think that health professionals don’t want to state the questions as baldly as some of my friends, but I would be surprised if they did not think it. So much of the literature I’ve read about breast cancer skips over the whole topic of intimacy, relationships and sex and their relationship to the surgery and treatments that follow from a breast cancer diagnosis. The most I’ve read is a sentence implying that ‘women hoping to enter new relationships might find breast cancer surgery and treatments challenging.’ Just writing that sentence makes my blood boil, so don’t let me go there – at least not fully. I simply say that because a woman might be over 50, or even 40, this does not mean that she no longer cares about her body, her desirability, her sexual pleasure, and desire for sexual intimacy. It does not mean that she no longer cares about her breasts. I know that there may be some women for whom this does not apply and that none of this is that important. Perhaps it never was? But what I do know is that I am not one of these women. MY BOOBS MATTER A LOT!
Bereavement and Future Planning
I spent three years helping my late husband on his journey with Stage 4 prostate cancer, both of us knowing that the only destination was death. At the end, I spent every day with him in the Marie Curie Hospice, frequently just holding his hand.
I think that those years meant that I started grieving before the final moment. I’d also decided to see a psychotherapist during this period to help me process all the emotions that raced around my brain. I’m so glad I was able to do this. I think I was more able to deal with the profound sadness of watching a vibrant, larger than life man deteriorate and become a shadow of his previous being. At the end, cancer seemed to attack his brain giving him increasing periods of psychosis, when he had very real hallucinations and delusions of having been kidnapped and held as a prisoner in a dungeon. This made my fearless Tim genuinely terrified. Other times he became so confused that he was unable to understand simple tasks such as how to use his mobile, read or follow a reasonably simple conversation or watch a movie.
But then suddenly, he was back to his old self, able to explain complicated design features, architectural and art history. Or even correct me if I used a clumsy phrase. He planned gourmet meals to be assembled and delivered to the hospice when friends came to visit. This was a delight for him – and for me when he was able to do this. I think that Tim might have had a word or two about my careless blog structure!
After Tim’s death in April 2019, it took me a couple of years before I could seriously start to think of planning my future life. However, I did see one before me and promised him before he died that I would not spend the rest of my time in my ‘widow’s weeds’ as the grieving widow. He wanted me to get out and have fun. His generosity in this regard was remarkable. He gave me advice about potential suitors and to be aware of men who might see the £ signs before they saw me. When I reflect on those days, I think it was remarkable that we were able to have these discussions. He saw the real me and loved me totally. But he wanted me to be happy and secure after he had gone. I don’t know how he was able to do this, but he did.
Post-Bereavement Spending Spree
I’m told that one should not make major decisions or expenditure following a significant bereavement when in a state of raw grief. Well, my friends, as usual, I broke all the rules. You cannot replace the lost person with objects, but I certainly did some big spending after Tim died. I think I tried to fill that emptiness his death left. Perhaps the same rule should apply to a post-cancer diagnosis. It certainly creates a sense of bereavement – even if you don’t have surgery and physically lose a part of your body. It is grief and bereavement for the loss of the life you thought was yours – and took for granted. Here are my spending highlights.
For Christmas and New Year 2019, on the advice of one of my neighbours, I went on a Cunard cruise of the Canaries. So unlike me! I’d always said that I would never go on a cruise. It just did not seem to fit my personality. I should have listened to that inner voice. But the truth is that I was desperate not to spend Christmas and New Year on my own. Neither did I want to impose myself on someone else’s celebrations where people might feel sorry for the ‘poor grieving widow.’ And yes, it was rather like spending two weeks in a luxury version of God’s Waiting Room.
I bought a beautiful vintage Bluthner grand piano, delivered on my return from Cruise-land.
Next, a nifty little red sports car – hardly driven
I went to the Alpujarra mountains in Southern Spain on a creative writing retreat.
Followed swiftly by a trip to Jerez de la Frontera with my son for the International Flamenco Festival. As a takeaway from Jerez, I contracted a bad case of Covid in March 2020, when I thought I was going to die. Clearly, I didn’t, but I was seriously ill.
That was 2019/2020. An eventful and expensive year.
My Pre-Cancer Plans
My bereavement spending wasn’t finished! I think I mentioned in an earlier blog that I bought a seaside house in Cyprus on the extreme Northwest coast in the Paphos region. Because of Covid, I couldn’t get out there to take possession until the end of May 2021, but I bought it within half an hour in December 2020 when the travel restrictions were temporarily lifted. My pre-cancer plan was to spend about half the year out there – not as a block, but every couple of months or so - writing my novel and songwriting. It’s about nine kilometres from my son’s house – close but far enough for us both to have our independence. The sunsets are spectacular, and I started making it ‘mine.’ I think my first purchases were a piano keyboard, an over-complex synth, and a fabulous original painting, ‘Clowns and Jokers’ by a fascinating Cypriot artist, Andreas Chrysafis.
I also installed PV solar panels which power the entire house – including new A/C, central heating, the pool pump, and its new heat pump that will allow me to swim when the weather is cool. I care about the environmental impact of everything in my house and Cyprus has more sunshine than any other country within the EU. It seemed absurd not to harness the power of this sunshine.
I created an office in one of the bedrooms where I sat writing. Did I say I was working on a novel? For once, I was working on a project in my own name, something I was, and still am proud to acknowledge. (Rather than all those erotic romance novels, novellas, and short stories written under a series of pen names.) I have a fabulous (and supremely patient) literary mentor, Romesh Gunesekera, a Booker shortlist author. Poor Romesh is patiently waiting for the next instalment of my manuscript. I will do it when Mr C gives me a break. But in the meantime, this blog is as much as I can write. A few photos of my house, the end of my road that opens onto the sea, and sunset from my office balcony below.
I’m unable to use the house as I planned because of Mr C and the uncertainties this 2022 brings me. I have an idea of lending the house during periods when I am not using it to one or two medical charities as a place of temporary respite for health professionals working on the frontline under conditions of huge stress and trauma. I think a week in the Villa Oasis might help restore some peace to troubled minds and bodies. I have yet to work out the details of how this can be administered and covered by insurance. I am in discussions with a few organisations to that end.
Sex, Intimacy, Breasts and Breast Cancer Part 2
After the house, my plan was to find a lover/companion/intimate friend – someone who might like to spend the odd days in Cyprus or hang out with me in London, or wherever. I’d duly signed up to a few dating sites (another, and totally separate set of stories and source of amusement!) I was not seeking a replacement for Tim. Not a ‘soul mate’ or whatever cliched phrase is used on these sites. I just wanted someone interesting who I’d have some chemistry with and with whom I’d want to spend some time and share laughter.
My motivation is not really sex, but a desire for intimacy. At times I long for someone to hold my hand, give me a cuddle, smile, share a meal with – and yes, some sex! Is that too much to ask for? I met someone from one of the dating sites who has become a good friend and is a very interesting man. I hope we will remain friends despite the geographic distance of London and Yorkshire, but I don’t think it will move from the ‘friend box.’
Before this, and by sheer coincidence, I unexpectedly established a connection with someone I’d known for a few years as a friend/colleague. I had been discussing doing a project at that time involving very ill people and sought his advice. I wanted to spend time with a few willing individuals to record and write their stories – or an aspect of the story. Everyone has a story, but few can write them, or have someone interested in doing so.
However, I lost contact with this special man after Tim’s diagnosis, and I didn’t feel I could work on a new project that would take considerable emotional and intellectual input from me. I reconnected with him after a chance encounter in the second half of 2020. Our personal circumstances had both changed dramatically. We were both then single and grief struck. To my surprise, we became very close, but just closely connected platonic friends. As fate would have it, a week before I went to Cyprus in May 2021, that friendship became something else. It was like a coup de foudre – at least for me. Out of nowhere and with no expectation on my part. I’m pretty sure he felt it too, but I could be wrong. (But as the song goes, “If you wanna know … it’s in his kiss!”) I can’t say too much about this man because he’s rather too well known. But sadly, I think it’s now all too much for him. Perhaps he has no emotional space for a romantic relationship at this time. Or maybe he doesn’t fancy me anymore. But how could anyone possibly feel a sudden lack of desire towards the irrepressible Susan angoy? 😊 (#onlykidding!) But after all, it was his powerful desire that created the said coup de foudre.
Perhaps my diagnosis is too much for him to deal with on top of everything else he is dealing with in his life. He will know more than I ever could what a breast cancer diagnosis will entail in the long term. It’s not easy for a nascent relationship. Lordy, this blog has become a mix of confessional and memoir!
Maybe not so much a confessional as a neat segue back to my theme. A woman with breast cancer is very different to one unvisited by the big Mr C. How does one progress a new relationship with the shadow of mastectomy, radiation and all the changes my body and psyche will experience from all those lifesaving but libido-killing and physical changes that hormone-suppressing drugs will bring? I’ve become much more emotionally needy. I have lost my light and breezy personality, exchanging music links, talking about writing, creative ideas, passion, fun, and easy laughter. On the other hand, perhaps I’m projecting my own fantasies?
Breast cancer has changed who I am. Breast cancer has changed how I see myself as a person. Breast cancer has changed how I perceive myself as a woman. My life can never go back, as if in a time capsule, to those heady days before my diagnosis.
Maybe one day, I will find that sunshine-filled, witty Susan again. The books and leaflets don’t give me a roadmap of how to do this.
I wish I could write an optimistic, inspiring post like some I read. Like those of the awesome Julia Bradbury and Dr Liz O’Riordan. Perhaps in time I will be able to do so. Meanwhile, you have Susan’s warts and all raw and searing prose.
My next post will be: “The Tyranny of Positivity – how are you feeling?”