Well here we are, it’s 2016. Hands up if you still remember all the fuss as we went from 1999 into the year 2K. All that panic about the computers of the world crashing and life as we know it disappearing. As always, it’s often the perception of something that is so much worse than the reality, but that doesn’t mean that worrying about the perception is not valid.
Last time I wrote about where I was with my treatments I was just about to have my second Prostap injection and was trying to manage the increase in hot flushes and the like. So it’s time to provide an update and potentially a shout out for sanity. My second Prostap a week before Christmas went ok, just a typical injection and fairly innocuous in itself accompanied by a quick chat with the nurse who was heading to The Gambia for a two week break #jealous.
My reaction to the initial injection had been as expected (hot flushes, tenderness, a couple of headaches and so on) but these symptoms settled down after a couple of weeks and felt more manageable. This was also linked with a sense that this was a positive move towards prevention of a reoccurrence and so I should (I told myself) get on with it. The second injection has kindly beefed up the side effects and I’m realising that its impact is potentially cumulative and therefore just like the price of train tickets, set to increase each time with little consideration for its passengers.
Did I use the word ‘manageable’ to describe the side effects? Did I? Did I? How ridiculous. My main difficulty and pressure point is the hot flushes. For those of you who think I’m referring to a slight feeling of being too warm, read on (if you dare!)…………
“If you’ve had one, there’s no mistaking it: the sudden, intense, hot feeling on your face and upper body, perhaps preceded or accompanied by a rapid heartbeat and sweating, nausea, dizziness, anxiety, headache, weakness, or a feeling of suffocation. Some women experience an “aura,” an uneasy feeling just before the hot flash that lets them know what’s coming. The flash is followed by a flush, leaving you reddened and perspiring. You can have a soaker or merely a moist upper lip. A chill can lead off the episode or be the finale.
Every woman’s experience is a little bit different. However, the faster you transition from regular periods to no periods, the more significant your hot flashes may be. Some premenopausal women who have their ovaries removed can experience severe hot flashes due to surgical menopause. Chemotherapy-induced medical menopause can cause hot flashes, as can hormonal therapies such as tamoxifen. Overall, the severity of hot flashes can vary from mild to moderate to severe.
If you haven’t been warned about hot flashes, a sudden severe episode can be frightening: it can have some of the same symptoms as a panic attack or a heart attack. It’s always a good idea to get such symptoms checked to rule out a more serious cause, such as a heart problem.
Hot flashes are mostly caused by the hormonal changes of menopause. As your oestrogen level falls, this has a direct effect on the hypothalamus, the part of the brain responsible for controlling your appetite, sleep cycles, sex hormones, and body temperature. Somehow (we don’t know exactly how), the drop in oestrogen confuses the hypothalamus — which is sometimes referred to as the body’s “thermostat”— and makes it read “too hot.”
The brain responds to this report by broadcasting an all-out alert to the heart, blood vessels, and nervous system: “Get rid of the heat!” The message is transmitted by the nervous system’s chemical messenger, epinephrine, and related compounds: norepinephrine, prostaglandin, and serotonin. The message is delivered instantly. Your heart pumps faster, the blood vessels in your skin dilate to circulate more blood to radiate off the heat, and your sweat glands release sweat to cool you off even more.
This heat-releasing mechanism is how your body keeps you from overheating in the summer, but when the process is triggered instead by a drop in oestrogen, your brain’s confused response can make you very uncomfortable. Some women’s skin temperature can rise six degrees Centigrade during a hot flash. Your body works to cool itself down when it shouldn’t, and you are miserable: soaking wet in the middle of a work meeting or in the middle of a good night’s sleep.
Hormonal therapies that lower oestrogen levels or block the hormone’s effects also can trigger this process. For example, tamoxifen causes hot flashes in more than 50% of users. The hot flashes usually increase over the first several months of treatment and then get better. If you’re already postmenopausal and had hot flashes before using tamoxifen, you’re likely to experience more severe hot flashes with this medication.
Thanks to Breast Cancer.org <Breast Cancer/ tips>
It’s joyous isn’t it? Bet you wish you were me.
I’ve been monitoring my hot flushes and reckon that I have roughly 25-30 in each 24 hour period. Not, you understand a neat and tidy one every hour on the hour, but a random event that happens when it feels like it, mainly at the most inappropriate time and most often during the night. This does not make for pretty living, restful sleeping or a 100% positive mindset. But I am trying to learn to keep it in perspective. The flushes themselves are actually quite unbelievable at times. I’m astounded at the heat, the ‘gentle sweating’ and the way that it disrupts your sleep so that sleep deprivation annoyingly enters into the mix and we all know what that does in terms of tolerance levels……..
I realise that these symptoms are actually as a result of my medically induced context and this is summed up brilliantly here:
“Premenopausal women who experience induced menopause are faced with menopause and its effects without the gradual adjustment time of perimenopause. The abrupt loss of oestrogen may result in more sudden and intense symptoms. Women who experience induced menopause usually have a greater need for treatment to control their menopause-associated symptoms than women who undergo natural menopause. And because these women are often younger, they need ongoing monitoring and sometimes treatment to lower the risk of menopause associated diseases such as osteoporosis later in life.”
Thanks to <hot flash havoc>
You’ll have noted the reference in this information to the age profile here as ‘women are often younger’ and are no doubt currently scratching your head to see what this possibly has to do with me as I head towards the ripe old age of 54 in a couple of weeks, however I have it on good authority that I am entitled to be in this group as when I saw my Oncologist on Monday she mentioned that I had ‘very youthful ovaries’. This is both a good and a bad thing; good because it’s legal and law abiding evidence that at least part of me is youthful and bad because it’s meant that making my youthful (think teenage) ovaries medically turn into old age ones is not going down well. Try making a teenager do anything they don’t want to do and you know they’ll kick back, fuss, scream, shout, sulk and generally be a PITA. Welcome to my world.
For those of you who need more information, or even just fancy a giggle, this movie trailer for a documentary on the menopause entitled ‘Hot Flash Havoc’ is worth a 3 minute watch. I love the hilarious quote at the start that they used for their strap line “If you have a vagina or know someone who has a vagina, you need to see this movie” – anonymous
On the whole I believe that it’s a documentary for partners of menopausal women really. We already know it all and no one’s going to say any different. Unless they’re up for serious fisticuffs.
As loss of memory and cognitive brain function are also attributes of the menopause, I’m currently ensuring that I don’t keep forgetting things. The irony of this was not lost on Steve when he noticed my handy way of ensuring that the eggs (further irony given the context) I needed to use first are carefully highlighted thus……
So it’s on with the Prostap injections, probably for the next 18 months and my first Zometa infusion (the first of 6 I’m going to have in the next three years) is going to take place the week after next. Conveniently I am due another Prostap next Tuesday, so this household is gearing up for fun, fun, fun.
My Oncologist gave me a leaflet regarding Zometa this week and I was peeved to read under the ‘Are there any side effects?’ section:
Rise in body temperature: Patients on Zometa have reported a flu-like syndrome consisting of symptoms such as headache, fever, bone pain, joint and/or muscle pain and tiredness.
Another realisation for me is that whilst you’re in the frantic time of active treatment you perceive that once you’re through that life will calm down and you can get back to whatever your ‘normal’ is. It doesn’t take a genius to guess that ‘normal’ never was and never will be. So it’s a long haul rather than a short flight.
Long haul is also the term I’d use for supporters, loved ones and friends who have accompanied me thus far and seem set to do the next bit unconditionally too. Sorry about the unplanned delay. Shit happens. After Christmas every year I read through the cards we’ve received once again before recycling them. I do this to give myself time to see who connected in this way and what they said; often in the build up to Christmas envelopes get ripped open and cards given a cursory glance.
Many people sent lovely hopeful messages and I hope that we in turn, replicated them back. This year also I have to admit that the teenager in me (remember those youthful ovaries?) also balked at cards that were sent from people who knew all about our trials and tribulations of last year and yet made no contact whatsoever. Somehow those cards felt less poignant and meaningless; how can you genuinely send Christmas wishes and bonhomie when your emotional radar appears to have been set to zero? This may seem a tad ungrateful and gripey but it’s something that anyone who has been affected by a serious diagnosis will tell you- that the overwhelming kindness of the majority of people is so nurturing but a part of you can’t help but focus on those who don’t appear to be empathetic in any way.
I appreciate that for some people, it’s hard or uncomfortable to make contact, not knowing what or how to say something, but heavens to Besty just do it! Goodness me, it ain’t that hard or would you rather switch roles? Thought not. Make that call, send that text/card/email now, visit, offer to cook a meal for them, do something. Be bothered cos it bothers us, petty as it may sound.
Current rant over. I’ll rant again just after my first Zometa infusion.
**Disclosure: The author of this blog post would like you to know that she had a total of 4 hot flushes whilst writing this and all rants contained in this post were sponsored by Tamoxifen and Prostap. No payment was received and no small animals harmed.