Changing Parameters

It's been a few days since my last blog post. I think I left it hanging having had my Last Post operative feedback appointment. The thing is that it's very painful to type because I've developed a haematoma near the wound that seems to be growing, rather than decreasing in size. But needs must, and I’m going to press on with this blog, then take some painkillers.

As I walked from the Macmillan Cancer centre on the 22nd of December 2021 I was in a state of shock. my feet led me down Tottenham Court Road, but I really wasn't aware of what I was doing. A thought came through my head which was, I wonder if you can become dehydrated from crying? Who knows what people thought as they saw this woman weeping, stumbling along the road, along the pavement? Frankly, I was beyond caring.

What made me think that I was going to get an easy result? What made me think that this lumpectomy surgery was going be the end of it? The truth is they discovered almost twice as much invasive cancer cells than had been seen in the scans. Furthermore, there was almost twice as much again of DCIS, which had not appeared in either mammogram or ultrasound scans. I learned that DCIS meant Ductal Carcinoma in Situ. In other words, cancer cells that had not yet burst out of the ducts, but they were mixed with the invasive cancer cells which made it difficult. My reading of this ‘difficulty’ meant that this was a potentially dangerous DCIS that had to be removed as soon as possible.

I studied my surgeon’s face as he explained this to me. He looked as if he was desperately trying to find me the good news before telling the bad and trying to make the bad sound palatable. The good news is that the nodes that had been removed were clear of cancer. On my previous visits to the UCH Macmillan Cancer Centre (UCH MCC) with my late husband, Tim, I’d made a point of examining the body language of the doctors and nurses when they spoke to him. I wonder if they knew that Sherlock Holmes sat in the consulting room, watching for any discrepancy between words and body language? And thus, it was the same for me on that day in December. Only this time I took on the role of both information recipient and observer.

I probably appeared calm and composed, giving off the signal that I was not phased by any information they could throw at me. That was the result of a lifetime of training from my mother and family. Don’t show too much but keep your composure. But the truth is that I was once again in shock, but also crying within. I knew that we were moving ever-increasingly towards that dreaded M word. Mastectomy. The word that had held me in terror since my adolescence. (Remember my first blog when I admitted my earlier thoughts of topping myself if I ever had breast cancer and had to have it/them hacked off?) But relax, I no longer have such melodramatic thoughts. And yet, my thoughts remain reasonably dark when it comes to losing my precious tits.

As I sat going through the options with the empathetic and clearly highly skilled surgeon, Mr Cariati, I felt those familiar pin pricks of waiting tears behind my eyes. But I was determined not to let the banks of that river break. Hold back the levees for just a little bit longer, Susan.

I asked his opinion on next steps, all the time knowing what I would decide, but I wanted to hear what he had to say. ‘Well, I look at you and can see that you care about your appearance and that you look after yourself. You don’t look your age by a long shot. In fact, I had to double check your records when I first saw you to make sure I had the right patient. So, based on that, I would think you might want to go for a staged approach. Once we remove the breast and then find there is healthy tissue, we can’t go backwards and stick it back on.’ I think I gave him a wan smile and nodded. I didn’t trust myself to speak at that moment as the pin pricks behind the eyes had become more insistent.

So, I am to have a second lumpectomy on January 27, when he hopes to be able to remove all the DCIS and a perimeter of healthy tissue, which would avoid the big M cut. But I could see that he was less certain about this being successful. This time I was not given any numbers about the chances of a fully successful operation. But I like dealing in numbers. My brain was fast calculating the total number of mm that had already been removed, trying to work out how much more would need to be taken out, measured against the size of my rather modest elevations. At times like this, I was longing for a rather greater abundance in the breast area. This was all getting deadly serious.

I asked whether they were sure I didn’t have cancer in the other breast. After all, that could also have been missed in the scans and I was experiencing an identical pain in that one as I had had before I went for my first mammogram in the diseased one in question. ‘Reasonable question,’ he says. But we need to go on the scans for now. Maybe this is also a staged approach? Who knows? I’m almost tempted to get another private scan of that breast, just to be sure. But that sounds a tad neurotic and might not go down too well with my team at the UCH MCC.

Associated symptoms

Nobody warns you that you are going to feel so much fatigue and pain. The photo of me was the day after my surgery, sporting my very sexy post-op cancer support bra, looking visibly pained. ‘Some discomfort for a few days’, they said. If that is standard, then I must be an outlier. At times, I am in so much pain I am in tears. I take the paracetamol and dihydrocodeine which help a bit, but lately don’t do too much. I try not to use my upper body muscles as instructed. But that’s very difficult when you live alone. Simple tasks become a major challenge. At times it feels as if I am organising a military campaign. Strictly speaking, I should not be typing and rarely do. I try voice recognition software but usually I give up because it makes so many errors. Playing the piano is even worse as I think that uses greater muscle action. These are the tools of my trade and the source of great pleasure for me.

I still haven’t found a solution to how to brush out the mess of kinky curls in my hair and wash it. I thought of going to the hairdresser early before the salon got full. Covid is a constant concern for me. Alas, my hairdresser is on compassionate leave until January 17 and if I wait until then I’ll have things growing in my hair. I will try to do it today. I’ve left the day free to complete the task in stages.

Then there’s the constant nausea and inability to eat much, although that has improved from practically zero food to bits of toast, crackers and surprisingly, cake. (I’ll post a photo of a huge pistachio and rose cake a kind friend sent me. Most of it is in the freezer.) Nobody can explain this set of symptoms as the brain scans have proved clear. But nausea and occasional vomiting are now my constant companions. I must not think about food or look at images of it. I then try to get as much nutrition into my stomach before my old friend Ms Nausea kicks in and I must push the plate/dish away and out of sight. When I say, “as much”, I’m talking a couple of spoons here. Thank goodness, I’d put on weight before all this started, otherwise I’d be looking decidedly malnourished. Instead, I’m looking lean but still in good shape – albeit my clothes are too big. The thing is I can’t really do much exercise. I’m trying to walk around the block a few times, but at times I can hardly make it up the road before feeling I’m going to collapse. (More of that in another blog.) I’m wondering if I can do a few minutes every day on my exercise bike if I don’t lean forward and engage my upper body muscles – just use my legs, and maybe do some wall squats.

I’m trying to find something positive to write in this blog post, but it’s difficult. Friends have been amazing in sending me messages and not getting upset if I’m too tired to speak. I am truly humbled by the love and affection. The UCH MCC staff have been fantastic. This ranges from the security, reception, admin and all the clinical staff. I honestly cannot praise them highly enough.

Maybe love and affection will be the topic for another blog post. This is an area that has been problematic and at times I think I’m going a bit crazy, doing, or saying things that I can only say are totally bonkers!

When my mum died suddenly in 2014, part of my bereavement therapy involved art therapy. At first, I wondered whether I would get anything from it, as I am not a visual artist. I write, and make music, but have never painted or created artistic products. However, I did find it surprisingly helpful and enjoyable. None of my work is going to hang in the Tate, but there is something in it. I think I might do something like this again by myself. Just some drawing/water colours. I will buy some materials online shortly and give it a go. I’ll post one or two of my great works of art from this previous therapy below this blog. The images of cupcakes in the paintings are because back then I had a mad business of making molecular cocktail cupcakes!

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Hasta pronto!