Although this particular part of my journey started before the radiotherapy, I wanted to cover that section first because it was a very specific period on the path onwards. It’s also probably one of the more ‘well-known’ phases in experiencing cancer.
Another part of the process had begun a month after the operation with the prescription of Tamoxifen and me starting to have to throw a pill down my neck on a daily basis.
Tamoxifen is the drug that most women are prescribed following breast cancer operations and treatment and when I was ‘involved’, the term that was ‘recommended’ (pretty much mandated) was to take it for five years.
The reason it’s prescribed is described on Macmillan’s site is as follows:
“Hormones are substances produced naturally in the body. They act as chemical messengers and help control the activity of cells and organs. Hormonal therapies interfere with the way hormones are made or how they work in the body.
Many breast cancers rely on the hormone oestrogen to grow. This type of breast cancer is called oestrogen receptor-positive (ER-positive) breast cancer. Tamoxifen blocks oestrogen from reaching the cancer cells. This means cancer either grows more slowly or stops growing altogether.”
The reason for me having the bastard lump in the first place is almost certainly linked with my taking of the pill for 15 years. As there is no family history of nasty C cells it is the most likely reason according to my doctors. Ironic because I was probably one of the few women that consciously make sure I took breaks when I wasn’t in serious relationships (so, most of the time then…).
When it was time to talk about me taking Tamoxifen, I realised that I hadn’t absorbed anything about this bit of the treatment beforehand. I guess because I was too busy thinking about the more immediate activities that had to happen after diagnosis and thinking about how big my nose was! Who cares about one pill every day for five years when before that you have to get to grips with having an operation and then to have your boob nuked?
Once I got past the op and the recovery, I started reading about Tamoxifen and what it was supposed to do to protect me. Unfortunately, I also started reading the forums of other women and their experiences.
At this point, although most of the women were five to ten years older than me and had cancer of varying degrees of seriousness, I was still a little shocked at some of the symptoms I was reading about. It appeared the majority of women talking on the forums were experiencing early menopause with severe hot flushes at all times of the day and night (or both), headaches, bad periods, all sorts of dryness, all sorts of sweatiness and God only knows what else.
Looking back on my experiences, I would say that it seems like I was lucky in comparison. During the first year, I don’t think I experienced much at all and thought, “Wow, this is ok!”. After the first year, the night sweats gradually appeared. I’d never experienced spontaneous sweating before (i.e. not through the gym or other ‘activities’) and the first time it happened, it was an experience, to say the least.
I can recall waking up feeling a bit ‘hot’, rubbing my upper chest and shoulder area in half asleep fashion and my hand skidding off because the surface of the skin was totally soaked. It was exactly as if I’d just stepped out of the shower.
Luckily, I was alone the first time it occurred, and although I was mildly upset, it didn’t vex me for too long. I was mostly fascinated. Well, as fascinated as one can be after waking up at 2 am, feeling soaking then immediately falling back into a deep sleep! Again, I have to use the word ‘lucky’ here. The ability to almost always go straight back to sleep when woken is one of the Wonders of the World and never have I been more grateful for that gift than during those nights. Talking to other women on the forums, it was certainly not the case. It was upsetting for a lot of them, and they felt unclean and had to instantly get up and change the sheets and their bed clothes if they were wearing any.
As my friends will attest, I have NEVER been one for any *regular* housework, over-cleaning or rabid personal hygiene. I *think* I am ‘normal’ clean, showering once a day, twice if I’ve been to the gym later in the day, and I use deodorant and perfume. That’s about it. If it is an unusual thing that I valued my sleep over getting up and getting off the sweaty sheets, then I’ll gladly be labelled ‘unusual’.
The sweats, I was able to cope with, and they were the primary physical manifestation of the symptoms I’d heard about. One small disappointment when I started on the T was my doctor telling me that it could feel like I was going through the menopause for part of or all of the five years. I got briefly very excited as I must have misheard (or not listened and assumed, which is more likely) because I thought it meant I would be done with the whole ‘period and pregnancy worry’ thing. Sadly, no. It could be LIKE I was going through the menopause for five years, but would not, in fact, BE the actual thing. At some point in my very long future, I would have to do the whole shebang again. Deep, deep, DEEP joy. Cause I love to menstruate, me. Love it.
In all seriousness, if my actual menopause (the physical aspects of it) were like these experiences then I would grab onto that with both hands. From what I have heard and read, a lot of women go through an awful lot worse. My monthly cycle remained without much change in pain or anything else, and that is worth A LOT. Obviously, once women go through the real deal, the monthly cycle is hopefully what gets the hell out of town at the end of the process!
From about two and half years into when I stopped taking T at four and half years in total, was the hormonal / mood swing stuff. It’s hard to pinpoint when I noticed it fully, but I became aware that I was super hormonal pre-cycle and that things were just upsetting me much more. People that know me and are reading this might either be pissing themselves laughing now or thinking, “She has always been a rude fucker”. They might be right.
However, all I can say is that I became very aware of feeling ultra hormonal, more often than I ever have. I felt that my personality changed quite a bit in times of ‘normal’ stress and I was just very highly strung (or should have been, to quote my mum!).
Before this happened to me, when I’d heard or read about women having ‘hormone trouble’ or ‘mood swings’, I admit that I had almost entirely dismissed it out of hand as a bit feeble, pathetic or done a huge eye roll. The thought that these women were using the age old excuse for simply being stroppy bitches used to annoy me intensely. A blanket apology is what I owe now because if I could retrospectively take back those opinions and thoughts, I would.
It had a severe effect on me. To the point when I cried down the phone to mum about it a couple of times and even broke down in a restaurant when the two of us were having dinner one night. Who does that? Women having a huge hormonal imbalance, that’s who.
Of course, this was one of the stated side-effects – and there are quite a few – of taking T for the amount of time that you’re supposed to, and that should have made me feel better. At the very least, I should have been happy that I had some magic ‘Get Out Of Being Punched in The Face For Being a Dick’ card. Unfortunately, it just made me feel like I was ‘defective’.
If it sounds ultra dramatic, like I was sobbing every day about this, I wasn’t. The running theme through this tale is that I mostly got on with stuff and didn’t feel the need to be too existential about everyday life. I like to enjoy it, not chew the arse out of every thought and action.
The phrase I feel fits most aptly is that it ‘affected my quality of life’. Not that I was in any way or at any point contemplating not having that life, but that it was, at times, an unpleasant time inside my head and body as a result of the mega hormones.
It was beginning to come to a head for me, and I kept having dreams about stopping taking the drug and my life going back to normal, feeling good, all athletic, etc. I wasn’t massively athletic before I’d started taking it, it has to be said, but I did put on the expected one and a half to two stone in weight, and that was not pleasing to me.
I started to do some very rudimentary research (Google only, nothing deep) into statistics on whether stopping taking T a few months early would send me back to Cancerland and I couldn’t find anything that rang any major alarm bells, so I went to see the doctor. I don’t have a ‘trusted advisor’ type local doctor like some do. I’ve moved around too much and hadn’t needed a doctor for anything other than the usual flu or bronchitis stuff so that I couldn’t pour my heart out.
I did feel, though, that due diligence about the decision I had already made in my head was needed so that I could defend myself against anyone that offered an opposing opinion. The doctor I saw was very sensible and had a little bit of knowledge of the particular area. She said that she could understand my feelings and that I’d done well to get to four and a half years, but advised me to talk it over with my oncologist so that I had all of the facts and latest information.
I was due to see the oncologist a couple of weeks later and duly trooped to the hospital. Again, because I had moved from London to Essex, there wasn’t a one person or team that knew me or the ins and outs of my case, but the notes were pretty clear. I got a great lady (Doctor E) who had a brilliant and humorous manner, and I explained my thinking.
She did the regular examination and once she was happy, sat down for a chat. She didn’t try to change my mind at all but asked what I’d been going through and what effect it had had. She got it. However, she did need to tell me that the thinking had changed between 2008 and 2012 and that now, when post operation cancer patients were prescribed Tamoxifen in the UK, they were being advised to take it for ten years. TEN YEARS!
I’m pretty sure I was shaking my head unconsciously as she was speaking because she had a friendly smirk on her face. Inside my head, the information hadn’t changed my decision, however, I knew I had to do a little more digging. I asked if there were any stats or studies that showed that women who took it for ten years instead of five were safer.
She said that there wasn’t any such information yet as there weren’t enough women who had reached the ten-year point and that the balance of probabilities was a fine one. Therefore, it was not a crazy decision to stop taking the drug if it were causing me this much grief.
I felt like a massive weight had been lifted from my shoulders and stopped taking it the next day (I’d already taken one that day like a good girl!).
No regrets at all. My decision was right for me.