Hi. I got back from my first hospital breast screening a few hours ago. My right breast has large masses in it that are growing and deforming the breast rapidly - it looks different every couple of days. The changes started slowly, after I accidentally bashed my boob and made it sore a few months ago - which disguised the initial changes that I (retrospectively) think were already happening. They soon sped up.
I have Severe ME and have lived with debilitating chronic fatigue and some comorbid conditions for 7 years, after having had an active life for 39 years prior to that. So I have had several years experience of dreadful times with consultants behaving like a bully, or not believing me about my symptoms, which seems par for the course for so many women with chronic health conditions that I have come to know. And as far as I could see, cancer treatments create fatigue (having spent a few years bed bound with chronic fatigue, and my activities are still very impaired by it, I couldn't bear the idea of becoming even worse nor the burden that would put on my partner - I still can’t). So when a few months ago the breast injury settled down, but it became apparent that other changes were starting to appear in my breast, and then tell-tale signs showed like dimpling, I just accepted that was it for me. I couldn't go through all that again, I couldn’t bear years of being even more ill than I am already, more debilitated, more degraded by arrogant consultants with Victorian attitudes to women’s health, and I accepted that this is just how I was going to die. (Not to mention the fear of surgery, feeling mutilated, loss of identity, loss of hair, and so on that I'm sure everyone here understands. Strangely, those thoughts came later). Is it weird to start this journey from accepting or preferring death rather than working my way towards that end of the grieving process? I don’t know.
Last week something in me changed – I had read about hormonal treatments for managing some cancers – I hadn’t heard of that before, which sounded less scary (maybe they’re not), and I read some personal experiences of women who are either living with breast cancer, at peace with dying with it, or fighting it, and so I phoned my GP surgery to ask for a breast exam. Not exactly with a feeling of hope or a desire to fight, but more that if I have to die, I want to die well. Which I wouldn't be able to do without medical help, eventually at least. So I need a formal diagnosis. It probably sounds morbid, but to me it seems practical - I know that given years of disabling health problems already, it's quality of life that's important to me, not quantity. I'm 46, and I don’t have kids to hang on in there for. And although I know that people survive breast cancer, I’m starting from a low level of health already, I don't want to fight anymore. Nor to just survive. I want to live. Until my time is up. I’ve seen most of my extended family die from cancer or from the chemo over the years. That’s influencing my perspective on this too. Although none of my blood relatives have had breast cancer, various other sorts instead.
On the phone I was spoken to by the GP receptionist like I was an annoyance because I dared to ask that it not be a telephone appointment that I have. She asked on the phone which breast, but for no other information. I didn't know what to think. When I got into the surgery the next day, the prescribing nurse just barked at me: "Come on then, let's see it!" as if gawd forbid I should have feelings or be scared about possible breast cancer. She stared at me impatiently while I undressed as if I was wasting her time. I just felt once again that I shouldn't be putting myself through this patronising degradation. That I shouldn't be there, if I'm going to die anyway, why put myself through this... When I took off my bra, the nurse went white as a sheet and her face dropped - there are a lot of changes that have happened to the breast tissue - its like a high scoring cancer awareness bingo. She pointed at a round ball shaped lump at the top and asked how long it had been there - Two weeks. It appeared suddenly. The other changes have happened more gradually, since the end of January. She told me she was making a 2 week referral for me. I didn't know what that meant. I asked if she meant a scan. She started looking apologetic...
Anyway, that was last Tuesday. Today, Sunday, and the hospital staff couldn't have been more different. Including the hospital receptionist who booked my appointment over the phone - she was so sensitive and discreet when I said I hadn't told my partner yet and she said she wouldn't send an appointment letter for that reason. The consultant who I saw first today, for a physical examination, was admittedly not exactly Mr Bedside Manner, but he was clear and told me that they will arrange for a biopsy, but clinically it doesn't look good. The masses are hard, fill most of the right breast and he can feel something to do with the nodes and the armpit. The left seems fine. He mentioned surgery, but in passing. To me, surgery now seems inevitable even for quality of life – the breast is changing so quickly it only just fits my bra now – the bra fit well 3 weeks ago. The breast is only going to deform quicker and more uncomfortably as the days go by. It now shows through clothes if I don't wear a bra. He asked if I have anyone at home with me. I said my partner lives 2 doors away but I haven't told him I'm here. He suggested I don't tell him till the lab results come back. That made me feel like it's my body, I didn't feel like an inconvenience or that I owe anyone, which was affirming in a strange way, even though I know the news won’t be good. It will be what it will be.
The mammogram nurse was so kind and understanding. A remarkable lady. I had to go back to her twice as the ultrasound lady needed more specific views of the dodgy areas. The ultrasound lady couldn't have been kinder too - was so patient with me, took biopsies with very careful consideration for the fact that local anaesthetics aren't effective on me, which I was very scared about and was one of the factors in my earlier decision to not see a doctor at all, to just accept it. I was so thankful to her. She said that although the labs should be back in a week, and then I should get a letter inviting me for another appointment, COVID means lab results are taking 2 or more weeks. When I thanked her for being so considerate of my comfort and helping me manage my chronic health problems while I was there (which can be really inconvenient for doctors – like blacking out just from sitting or standing upright), she dismissed it as just what she does. I told her that I’ve had a few bad experiences with doctors who don’t believe me about symptoms, or are convinced they’re going to be the one who successfully numbs me for a procedure and then panic when they can’t and I end up screaming in pain or they abandon an operation leaving me patched up. She said if a doctor doesn't listen to and believe their patient, they’re not doing their job. Wow. She was amazing. I thanked her for making me feel acknowledged. I’ve never heard a medical professional say anything like that before. I was in the clinic nearly 2 hours in the end. And you know what? Throughout today’s hospital visit, not one of the staff talked down to me, or stared at me while I undressed, or could have been any more professional or given me more dignity. What a difference to what I’m used to.
I don't know how much surgery or any other treatment I'm prepared to have yet. But I'll take it one day at a time when I know what options I have. I'm big busted (36H) and the right breast has already grown uncomfortable and is sometimes in the way of my arm. So even with a mantra of quality over quantity of life, there will be big surgery to come. One day at a time, though... For tonight, its painkillers and healing from the biopsies.
