Friday, October 13, 2023

2 days, 2 years later

Every so often I feel like writing about a quasi-taboo subject matter and then go to delete it once I have. But the only way to make those topics less frightening is writing about them; maybe it'll help someone else go through something similar one day.

It's now been 2 years and 3 months since I rather carelessly lost one of my boobs. Let's just say you can no longer call me a 'right tit', no matter what I do!

Humour is one way of tackling the situation. Another is distancing yourself from the occurrence to the point where you almost can't believe it happened, to you at least. 

It is never a good sign when they tell you at your mammogram that they would rather you didn't put your clothes back on, but instead follow them to an ultrasound room to meet a consultant.

That in itself was a rather surreal situation, because you are at best psyched up for reading mammogram results a week after the most unpleasant boob-squeeze. You are not psyched up for watching your own boob on an ultrasound screen within five minutes. 

Having been in lockdown almost since my arrival in Denmark, I hadn't had many opportunities at that point to practise my Danish. My passive Danish was fine, I'd been listening to it for 13 years at that point, but I was just learning to speak it out loud, which is no mean feat as there are some seriously hard-to-pronounce sounds in this language. And this mammogram was at the height of the covid outbreak, which didn't hit Denmark anything like as badly as the UK, but it did still mean I had to attend this appointment alone.

To my untrained eye, things didn't look dire. There were no obvious clumps of dodgy cells, suggesting a tumour, there were no lumps or bumps and none of the outward signs you get on that diagram that makes the rounds of Facebook every few months. The only surprise I could see were long strands of white that looked vaguely like long worms. The consultant explained that these were long, maybe 10cm, areas of calcium built up in my milk ducts. I had breastfed five kids for two years each so it was of no surprise to me that there might be a little build up of something in there, some wear and tear, some damage. And they kept using the word calcium, so that isn't a bad thing, is it? They gave me a leaflet on calcium in technical Danish and booked me to come back for a biopsy. That word I liked less, but again, if it was to determine if there was a calcium build-up, how bad could it be?

The biopsy made the normal mammogram seem like a walk in the park. Every older woman knows the horrors of a mammogram. I don't know about in the UK, but here there are signs up claiming the procedure isn't painful, mere uncomfortable. Bullshit! They take a carpenter's vice, squish your boob into it, turn the handle till your eyes water, then turn it just a little more till you think you might pass out, take a photo, then repeat the procedure from different angles three more times. For the biopsy, however, they need to see your boob in real time. So you get to lie face down on a bed with a hole to put your boob in. A nurse pulls and tugs on you till they have you in place in that vice and onscreen. Instead of the usual 5 second photo, you lie there while the insert a knitting needle into you to extract cells. They keep you clamped while they check each sample to see if they have enough cells, they repeat this procedure for about half an hour. All the while a second nurse holds your hand looking incredibly sympathetic, which is both nice and terrifying, in equal measures. Even if you weren't being investigated for a cancerous growth in your breast, it would be a bloody nightmare, but add that psychological layer on top and it is almost too much to bear. 

As you go to leave, you're given a further booklet on calcium, and they mention almost as an afterthought that very occasionally, if you are really unlucky, the biopsy needs to be repeated if they didn't get the right cells. A week later of course I got the email asking me to come back to repeat the entire ordeal as I was one of the unlucky ones. The bruising was quite a sight!

After the second biopsy, I was invited in, this time with my husband, an ominous sign, to discuss the way forward. That was when I was first given a leaflet of DCiS, (ductal carcinoma in situ). The consultant told me Danes usually react ok to this as they mainly know germanic languages so know none of those words, but as a speaker of many romance languages, I didn't need any explaining of that condition. They went on to explain that if the carcinoma was still in situ in the duct, I would be ok until it grew and burst out into my breast or was carried round my body by means of my lymphatic system. All in all, it would probably be around ten years before it mutated into incurable cancer. The only way to tell was to inject dye into me and trace which lymphs were being used by which ducts. More than two years on my breast is still blue where the dye went in! Once the lymphs were located, they were removed and biopsied. They came back clear so it was indeed still contained to my duct.

In the UK, they usually perform a lumpectomy at this point, according to the NHS Scotland website anyway. In Denmark the standard procedure, and only one on offer to me was a full mastectomy within a week. I could decide whether or not to be reconstructed during this operation, later or not at all. In my head there were only two options: 'then' or 'never' (and 'never' was not even a close second in my head). I couldn't face going through it all, healing, physio and then going back to square one. Had they removed both, I might have managed to consider the option of 'never', but I couldn't face it with only one. I had been 'top-heavy' since my teens, it was part of my femininity and I couldn't imagine what having only one breast would do to me psychologically in my early 50s. Already I was facing looking like a train wreck naked, but in my clothes I could hide and feel normal and that mattered to me. It was six months before I could bear to have anyone look at me, even reconstructed with all the scarring, so I am not sure I could have got my head round the alternative. I have nothing but admiration to the stronger women than me who opt for 'never'.

I expect if your mind is strong enough, 'never' is probably more comfortable. I have no feeling on one side from my shoulder to the bottom of my ribs. I can feel tugging, but pinch me, burn me and I have no reaction. It aches but it doesn't feel like it is part of me. With all the muscles cut away, it took six months of physio before I could lift a salad bowl down from a shelf or close the boot of my car. I simply couldn't reach upwards with my right arm. Even now it is harder to use my right arm than my left.

For the first few months, you are so caught up with the physical aftermath, you don't get as far as analysing the psychological. When I think back now, I am gobsmacked. I took the three youngest kids to Hamburg (3 hours away) for a four day holiday 3 weeks after my op, 1 week after the drains were removed from my body, because I felt I had let them down by not being able to go on the summer holiday given I was operated on at the beginning of July. With hindsight I must have been insane. What on earth was I thinking clocking up 20 000 steps round Hamburg and L├╝beck so soon after such a huge operation?

I didn't even tell my mother or the members of my family who weren't in Denmark, because Covid restrictions meant they couldn't get to me, so I didn't want to worry them. I rang my mum on the Monday for our usual chat saying I was busy Tuesday and Wednesday and then rang again on the Thursday as if nothing had happened. She died six months later thinking I had had nothing more than a minor procedure at my GPs to remove a little calcium, not imagining I had had a lymphadenectomy, a mastectomy, a breast reconstruction, a breast reduction on the other side to even things up a bit. And those were only the physical things.

The mental side of things was a whole other realm. It was two-pronged. On the one hand, it had been caught early enough that major surgery was enough, meaning I got to bypass the horrors of chemo, radiotherapy etc, and I wake up eternally grateful for that every day. But on the other, it was one of the worst things you can go through without reaching that final level of horror. So, I was in this odd limbo where I didn't feel mentally I had the right to mope or complain because I had been so lucky; so many people have it so much worse. It did seem weird though to go through what I went through with no acknowledgement from myself or others of the depth of that trauma. On balance though, I think I coped reasonably well with it all and was sure it was all behind me.

Two weeks ago, I went for my first mammogram on the remaining breast since that whole rollercoaster ride. I hadn't needed one till now as the tissue from the remaining breast had been biopsied when the reduction surgery was carried out. I managed to attend the appointment without being too traumatised, driving myself there, chatting to the staff in the health centre. It is hard for me to undress in front of strangers now, which is odd as I was never shy before. I look completely normal in clothes, so as I undressed, I warned the woman who was going to be doing the xrays and the young male student who was obviously there to learn about the job, before turning to face them. Yes, they probably see this every day, but I still struggle with how I look, even if they don't. Maybe one day I'll have the balls to go topless sunbathing in Spain again and simply tell people I was attacked by a shark or similar but I am not quite there yet. They said they had read my notes and tried to put me at ease.

I wasn't taken through to the ultrasound this time, which had to be good, right? Yet, three days later when I got an alert that there was a new message from Syddanmark health service in my private email box (all medical correspondence is secure digital in Denmark), I couldn't open it. I thought I was fine, but I simply couldn't bring myself to read it. Thomas asked if I wanted him to read it, but I would know from his face, so I sat on the message for a full two days until finally on the third morning I woke up with enough mental strength to finally dive in and read my results, which were fine this time. So I guess it did affect me more than I am willing to admit if it took me two days and a night simply to open an email.

Onwards and upwards, I guess.