hot flushes

Breast cancer lesson 136: Say goodbye to the fake menopause – and hello to a good night’s sleep

Contrary to what my oncologist thinks (although I fear he was trying to lighten things), no woman needs a fake menopause to prepare themselves for the real thing. You may see it as an end to periods as you know them. In truth, the menopause disrupts so much more than that (sleep being top of the list) and, enduring it more than once is not something ever to be encouraged.

That is, unless you want to try and give your ovaries a chance of coming back to life after chemo!

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Four weeks ago today, I was waiting patiently in the oncology clinic for my very last Zoladex injection (click here for lesson 124 and a quick reminder). Zoladex (also known as Goserelin) is a hormone therapy sometimes offered to pre-menopausal women throughout chemo to send their ovaries to sleep. The idea is that chemo drugs tend not to attack things that aren’t actually doing anything (similar to the cold cap treatment to reduce the chances of hair loss). While its effectiveness is still yet to be proven, it is widely agreed that while taking the drug may not guarantee you retain your fertility after treatment, it certainly doesn’t do any harm (unless you see four months of sleep deprivation as harmful)!

With no Zoladex appointment scheduled, today marks the start of the waiting game. Up until now, I have not expected a period. Now, I live in hope that my body will return itself to normal and not actually send me into the official menopause (if feels strange to be wanting something like a period. I will probably regret saying that if it comes back with a vengeance). The odds, based on my age, are good. The reality? No one knows and no one dares predict. It’s saving me a fortune in sanitary products, but I would really rather just take the hit.

I haven’t written much about my feelings surrounding the prospect of infertility. I have always been a great believer that things are meant to be. I remain thankful that lots of my friends have been able to conceive and I feel lucky to have so many children in my life (if not under our roof). Whatever happens (even with seven embryos in the freezer), I just feel happy to be here. The future can take care of itself. The way I see it, childless and alive is still a good result! And, if children do feature in our future, I have Zoladex to thank for preparing me well for months of sleep deprivation.

Of course, it’s not just the periods I am willing to return. A night without a yo-yoing temperature is something about which I have been dreaming (when I get the rare chance) for a long time. I understand that Tamoxifen – my soon to be best friend for the next 10 years – is likely to cause at least some of the same symptoms (lucky me!), but given I don’t have to start taking this daily delight until radiotherapy is over, I am hoping for at least a little break (PLEASE!!!!!!). I am now pretty effective on about three hours (my usual pattern is to fall asleep straight away and then wriggle around in a few different outfits from 2am onwards) – but I really wish I didn’t need to be. When a lie-in is once again a treat, you will all know about it. The title of this post may seem a little premature, but I am hoping by expressing it publically, my body might just take the hint!

My fingers are well and truly crossed. Let the waiting game begin!

 

Breast cancer lesson number 109: Strength is believing you can do it, but recognising you don’t have to do it alone

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It’s a strange use for a beautiful cake stand I grant you (and to the lovely friend who bought it for me years ago, please don’t worry, it will be returned to its former glory as soon as I stop rattling). This little pyramid of pills (my portable pharmacy) is not just my ticket to a pain-free chemo. It serves as a visual reminder to me that for every challenge I face, there is someone out there who has either conquered it before me or can prescribe something that will!

I am rubbish when it comes to asking for help. When I spot a side effect my first instinct is not to ask someone who can do something about it, but to research it, determine whether or not it is ‘normal’ and then find my own way of getting through it. Something inside me says: ‘you’re doing really well Jackie so why should you be a burden for an already-creaking NHS system?’ On Saturday, when my temperature hit 37.7 (not 38), I was more worried about unnecessarily disturbing someone on their weekend than I was the fear of neutropenic septicaemia. On Monday, when I called acute oncology to ask for some advice and got no call back, I simply assumed there were lots more deserving patients ahead of me and that I should leave the line open for someone else. I felt bad about emailing my amazing oncology nurse instead. I felt worse when she replied straight away after hours urging me to call the on-call oncology registrar. And I felt even worse when the on-call registrar called me back when I wasn’t presenting a high temperature. Cancer has made me a burden in so many ways and, as a patient (particularly one that doesn’t have too many issues), I find it so hard to know when to ask for reassurance and when to just go it alone.

Yesterday, however, taught me that just because my symptoms are not serious, the illness for which I am being treated certainly is. And, while a sore throat, furry white tongue, hot flushes, painful and sore heels may not sound horrible in isolation, add them all up and throw in a chunk of cancer and there’s certainly no reason to feel bad about asking for help.

Yesterday, I felt less like a burden. On my way into hospital for a PICC line flush, my penultimate Zoladex implant (my side may stop looking like a pinboard soon) and my menopause clinic appointment, I got a call asking me to add in a blood test and a trip to acute oncology. The sore throat I didn’t want to bother anyone with was actually Oesophagitis, meaning I could replace my suffering with some pills (fluconazole to be precise). The nurse examining me was lovely and made me realise that I don’t have to get through it on my own and that a lot of people suffer from similar symptoms (hence the ease with which he was able to pinpoint and prescribe for the problem).

The highlight of my day, however, was the menopause clinic appointment (for which I was just two minutes early – not two months this time). Conditioned as I am to appointments with consultants, doctors, nurses and surgeons who see cancer every day, I thought nothing of launching into a matter-of-fact account of the last six months in response to the doctor’s opening line: ‘Well, I’ve had a quick look at your notes and it looks like you’ve had an interesting year so far.’ I think it was the point at which – realising I had overlooked the whole fertility drugs bit – I threw in the phrase: ‘Oh and then I froze some embryos’ that it struck me. Cancer treatment is not normal. Cancer treatment is hardcore and anyone who endures it deserves a medal not just a follow-up appointment further than a week away. I think it struck her at the point at which I was trying to remember when I last had a period. I couldn’t. My drugs list was also so long, she stopped writing it down!

As I discovered, an oestrogen-positive cancer patient is not the norm down in women’s services. Most menopausal women are allowed hormone tablets to stop their hot flushes. Those tablets may stop the flushes, but would end up fuelling my cancer and we’d be back at square one. When I threw in the fact I would rather avoid any drugs (having heard about them) that contained anti-depressants (albeit at a different dose) that left me with about one option: Clonidine. It’s a high blood pressure tablet that has been proven to be effective in about 30% of hot flush cases. I’ll take 30%! I have to get it from my GP (so can’t immediately extol its virtues), but I’ll let you know if it does the job. I am afraid I don’t have any advice to impart from the session (I was just relieved she didn’t tell me to give up drinking tea), but would recommend you seek out a ‘women’s services’ near you to take the heat off! 

We did have a good laugh about the Ladycare magnet, which brought humour (by successfully attached me to all nearby metallic objects) rather than good sleep into my life. I like to think she went home and googled it last night and will forever remember the story of the girl in the pink hat who tried to stop her sweats by popping a giant magnetic stone in her pants! 

Walking away from the hospital yesterday evening with two solutions to two problems, I felt reassured (and happy that I hadn’t been wasting anyone’s time). But I also felt proud of myself. I am getting up and fighting this every day and I am getting through. I am taking everything that is being thrown at me. I have been treated for cancer for 118 days now and – barring the day of and after surgery – I haven’t spent an entire day in bed. But, most importantly, I have realised that while it is good to be strong, it is better to acknowledge that you don’t always have to be.

Strength is believing you can do it, but recognising you don’t have to do it alone. It is wise and not weak to ask for help. Help is there, whether in the form of a pill packet or a friendly face, and help can give you the extra tools you need to keep fighting.

From now on, I will be strong, but not too strong.

 

Breast cancer lesson number 105: What the chemo consent forms won’t tell you!

I have made a discovery. There are certain chemo side effects that don’t appear on factsheets and hospital consent forms. That’s not because they don’t exist, but because patients and consultants alike would have to endure a certain amount of embarrassment to reveal them.

They may not be groundbreaking and they’re certainly not on a scale of peripheral neuropathy or fatigue. But, I believe any side effect that brings about a physical change (embarrassing or otherwise) should be noted down so that a) we don’t all think we’re bonkers when it happens and b) we go into the entire process knowing there might be a few laughs along the way. So that’s what I’m about to do.

Before I begin, I think I should start with an apology, particularly to my loyal male readers. The following post may take you to places you’d really rather you didn’t know existed. There is about to be what one might call an element of oversharing. Trust me, it is not indulgent. It is medical. While I think it wrong to apologise for the route I am about to take, I can confirm that I will be containing it to a single blog post, so you don’t have to concern yourself with a repeat performance. Who knows? You might just find it funny.

I think it is fair to say that I’m not surprised certain side effects do not get a public airing. It takes me back to my hip surgery days. I remember waking up from the operation to find that my nether regions had been dyed a rather peculiar shade of purple. It was also a rather permanent type of dye, which meant I had to live with my alien-like hue for quite a while before the colour grew out. I had been prepared for the pain, the discomfort and the lack of weight bearing. I had not been prepared to laugh every time I took a shower.

Thoroughly amused by this turn of events, I raised the point at a focus group about patient care as a way of demonstrating that even the smallest of details are worth mentioning to help people deal with recovery. The patients all nodded in agreement as if reminding themselves of the discovery. The nurses laughed. And the surgeon? Well, he explained that they must have been out of the orange dye that week!

I am afraid to say it is this same region that has triggered my search for the secret chemo side effects everyone has, but no one dares to declare. Having never had a Brazilian wax, I was rather intrigued at the possibility of losing my hair on areas other than my head. But, I have to confess, it brought with it a rather unusual problem. Without being too crude, it seems the hair does help in a directional sense and its absence means you have to be vigilant (particularly if you have a tendency to crouch in public loos). Initially I thought it was just me, but having mentioned it to a few select ears (and done some rather entertaining Googling), it seems I am on to something! Now why didn’t the oncologist mention that when he was telling me about coping with hair loss! It may not warrant a whole fact booklet, but I think it deserves a paragraph. And, as an aside for women who trim regularly, I would urge you all to stop.

On the subject of hair loss, I think it strange that the advice tends to focus on the hair, eyelashes and the eyebrows. What about nose hair?! While losing the hair on your head is not to be recommended (unless you really do like the idea of trying out every short style you never dare attempt), it is manageable. Losing the hair in your nose, however, makes it look like you are dining on a diet of curries and hot foods.

And then there’s the growing back bit! While I am yet to enjoy this rather hairy experience, I am led to believe that the hair doesn’t always remember where it’s supposed to grow. I have heard of people shaving their big toes and not their armpits!

Why is it that everyone goes on about Epirubicin and the dreaded ‘pink pee’, but nobody talks or writes about Docetaxel and the ‘sweet pee’? I’d take coloured pee any day over something that smells like an overstocked sweetie store. For those of you about to embark on this taxing drug, you have been warned!

Even products designed to alleviate some of the more well-reported side effects, such as hot flushes, don’t offer up the full picture. I have been wearing the Ladycare magnet in my knickers for a week or so now in an attempt to get a good night of sleep. I am not sure it has reduced my sweats, but it has managed to attach me to everything from my dessert spoon to my door keys. Thankfully a kind friend warned me of this, so I wasn’t too alarmed when it happened for the first time. I don’t really like the idea of being joined at the hip with all metal items in the neighbourhood.

I should also mention that there are also positive side effects that I would have loved to have been told about upfront to balance things a bit. The consent form should say: ‘by signing up to this course of chemotherapy drugs please be advised that your skin will become silky smooth and soft.’

I should probably stop here before I lose all my followers. But, let me leave you with a few final thoughts. To all medical professionals out there, fear not the embarrassing, blush-inducing side effects! If we’re going to sign off a seven-page consent form, it is best to make it thorough! And to all cancer patients, please open up about those secret side effects (post here or make your oncologist blush).

Because, chances are, the person sitting next to you in the waiting room is experiencing them too.

Breast cancer lesson number 98: If you can’t stand the heat, find someone to help you cool down

With a trip to the menopause clinic on today’s agenda (in yet another part of the hospital – this time Women’s Services) I was planning to fill this post with practical tips to help those going through both an enforced chemically-induced ‘change of life’ and the real thing. Trouble is, you don’t learn much when you don’t get further than the waiting room!

I always like to be punctual, but while turning up two minutes before an appointment is fine, two months is a little on the eager side! Whether it was a glitch in the admin system or an attack of chemobrain (which I am still trying to convince myself won’t affect me), I will never really know. But, let’s just say, the date and time in my diary (agreed over the phone last week) didn’t match the system or, in fact, the letter they’d sent me following the call (that I had failed to scrutinise).

I had a good laugh with the receptionist (who thankfully saw the funny side too) and it wasn’t a wasted trip (I got a PICC line flush and a beautiful back and foot rub thrown in from a kind Dimbleby Cancer Care lady), but the problem I now have is, the appointment is so late in my chemo regime (more than a week after my last poisoning) it almost isn’t worth having. Plus I am now facing two more months of hot flush fuelled nights. Trust me, two nights is enough! I could, of course, go to discuss the fact I may get more sweats on Tamoxifen, but I’m not sure the NHS would appreciate a hypothetical discussion about side effects I might get.

Sadly, the cancer card does not work in all parts of the hospital and I left with little more than a red face – probably due to the hot flush that had appeared as if on cue in protest. So I did what any woman in need of a natural cure would do and I rejoined a beautiful friend and her daughter (who I’d enjoyed a 30-minute pizza trip with an hour earlier) for a consolatory ice cream. It certainly didn’t magic up a new more useful appointment, but it was a brilliant temporary fix.

Hopefully I will be able to ask the oncology nurse for some advice next week (can you really be examined for hot flushes anyway?). In the meantime, I have turned not to Dr Google, but to the Young Breast Cancer Network Facebook group. Within a matter of minutes I was inundated with tips. My favourite has to be a lady care magnet, which you attach to the front of your knickers! Sounds strange and a little heavy, but I am absolutely going to try it.

I’ll let you know how I get on. Just don’t ask me about it in polite company! And, if all else fails, at least there is ice cream!

Breast cancer lesson number 78: The best way to see what tomorrow brings is to sleep through the night

Zoladex may be looking after my ovaries during chemotherapy, but in so doing, it seems to have waged a rather cruel war on my sleep patterns. Would I trade in my much-loved slumber for a little bundle of joy? Of course I would. But, given that that little bundle of joy is currently sitting it out in the hospital freezer, I think the sleep deprivation is a bit premature!

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I am pointing the finger firmly at my ovarian suppression implant – designed to send me into a fake early menopause – but I don’t think it is the only culprit. We now have the comfiest bed ever thanks to our wonderful university friends who clubbed together to buy us a mattress. So why do the drugs have to make things so uncomfortable?

For anyone wondering what has been going on in our bedroom for the last five nights it is this. First, I dress for bed in a rather fetching outfit made up of a bra (yes I was a bit naked without it, so it’s back), a vest (pink of course), some pyjamas (navy of course), a pair of matching bed socks (complete with pom poms) and a sleep cap. I look pretty coordinated, but I also look like I am prepared for an ice cave rather than a comfy comfy bed.

Once in my battle dress, I drift off to sleep without a care in the world, but only for about 45 minutes. Then (and you really could set your clock by it), I am jolted awake by the first of many night sweat/hot flush episodes. It’s like I’m in a spa wandering between the ice cave and the steam room, except there is no attractive ice cave, steam room, soothing music or aromatherapy oils to keep me company. It’s just me – and a whole lot of sweat. Off come the socks, off comes the bed cap and half an hour later I am back in the ice cave searching for the socks and the bed cap once more. Hot then strip then cold. Cold then wrap up then hot. Repeat, sigh, repeat. The bed, once a source of real comfort, now feels like an instrument of torture.

Maybe I should be thanking Zoladex for giving me such a wonderful insight into the sleep deprivation that comes with the early days of parenthood. Given there’s no way of knowing whether it’s working, however, I think it’s not something you should be made to endure unless you have a rather lovely reason to get out of bed (retrieving a sleep cap doesn’t really cut it).

Sleep, if you’re out there, please come back. Whatever I have done to offend you, please let me make amends. Sweet dreams are certainly not make of this.