Zoladex

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 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. 

Breast cancer lesson number 69: When your ovaries are at stake, do what needs to be done

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While most people were on their way to work in the Capital today, I was on a quick detour (also on my way to the office I hasten to add). Yes, it involved the hospital. And, yes it involved this rather exciting gold box.

Now don’t be deceived by its shiny exterior. Inside this box is one of the largest and strangest syringes I have ever seen – and would ever want to see. That’s because, like a lot of syringes, it’s not designed to administer liquid. Instead, it houses an implant (a small pellet) that needs to be injected under the skin to release a drug called Goserelin. In the hands of a nurse with no local anaesthetic cream (and only a side and not a stomach in which to inject said implant), there is only one outcome – and it’s pretty painful.

Why would I want to inflict this optional pain on myself I hear you ask? Well, if you’ve followed my fertility journey, you’ll know that Goserelin (otherwise known as Zoladex) is all part of the try-to-stop-cancer-taking-away-my-fertility plan. Even though we have embryos in the freezer, we would still rather not use them. Zoladex is a synthetic version of a natural hormone that controls how the ovaries work. By switching off the production of oestrogen, it suppresses the ovaries and sends women into an artificial early menopause (hot flushes here we come). Just when you thought you’d had enough of side effects, it throws in a few more!

Now, it’s not the first time I have received this injection (the first one was alluded to in lesson number 42). I have already had a hot flush and I still have three more to go. But, it is the first time I’ve not just slotted it alongside other news of the day. And that’s because, it’s a big syringe, with an even bigger role to play. Nobody wants to sit in the chemo chair thinking they haven’t done everything they can to protect their ovaries and their chance of bringing children into the world. Everyone undergoing chemo should be given the choice, where appropriate, to go up against this oversized needle and endure a period of self-inflicted hot flushes. If the prospect of being able to have children fades before your eyes, you’ll know just why this gold box deserves a little post all to itself. Goserelin is not just a side note in the fight against cancer. It’s a star.

This box also reminds me of just how amazing medicine really is. We often take it for granted as we’re popping our paracetamol and rubbing in our ibuprofen gel. But, medicine has given us hope where are bodies have tried to take it away. Medicine knows how to trick cancer cells – and kill them. Medicine is the reason I can still picture myself changing nappies. And, most importantly, medicine is the reason I am alive today. I am in awe.

Read the Goserelin (Zoladex) factsheets and they sometimes say that the use of the drug during chemotherapy is still something currently being tested as part of clinical trials. Apparently oncologists don’t all agree about its use in this context. I’m not an expert, but I am writing this because I want to help others in my situation find out about the options. You may not be able to receive the drug (or have it recommended to you), but now you know to ask – and that’s all that matters. You also know not to look inside the box or at the needle. You just need to do what needs to be done.

In every other way, it was a normal day at the office. But, as I sat there answering emails and discussing visuals, I couldn’t help but smile at the throbbing in my side. Inside that little pellet is where the magic of medicine really comes into play. It may not work for me, but I will always know I gave it my best shot.

If you are interested in finding out more about the fertility journey as part of cancer treatment, I have written a blog for Breast Cancer Care. Here’s the link in case you find it of use: http://bit.ly/1gnEnyq

Breast cancer lesson number 42: Make your next appointment a real treat

If my diary is anything to go by, I can tell you now, NHS staff are busy (and I mean busy). Let’s face it, when undergoing active treatment, a week without a trip to the hospital (or a least a series of letters) can seem a bit disconcerting.

Stood waiting for the nurse to puncture me with a giant needle and implant of Zoladex this morning, however, I was hit not by the fact it was my third appointment of the week and it was only Tuesday, but by the fact that it was before 9am and the waiting room was packed. On each warm seat was a patient (or supportive shoulder) with their own story, their own medical history and their own treatment plan. Each one of those patients needed time. But, when you have a waiting room overflowing with people, time is the one thing in short supply.

I am in awe of the NHS. This has nothing to do with the number of needles that have made it under my skin over the last 32 years, the eight general anaesthetic procedures I have now racked up or the phone system that you do occasionally get lost in. This has everything to do with the level of care that I have received – and continue to receive – on a daily basis. It’s the breast care nurse who attended my oncology appointment yesterday just because she wanted to catch up with me. It’s the surgeon who stopped me in the corridor to tell me I was looking well. It’s the student nurse who took me to the toilet seven times in one day on the ward and gave me a wonderful shower when I couldn’t move properly. It’s the receptionist who said how great it was to see me smile. See the NHS as a large, flawed, headline-making system and you miss the point. The NHS is an awe-inspiring service filled with people who give over their lives to make the lives of strangers just that little bit better. Don’t believe me? I challenge you to go and sit in an oncology waiting room. Then, you won’t disagree.

The trouble with cancer (like so many serious and debilitating illnesses), however, is that appointment times and treatment plans are only half the battle. A consultation provides merely a window into the life you are leading and each one is often determined by the way you are feeling when you get up that day. Away from the bright lights, the smell of alcohol wipes and the understanding faces, when it’s just you and the ‘big C’, it’s easy to feel alone and invisible. The experts are working tirelessly to save your life and reassure you at every stage. They can’t be there to help with through daily exercises, to rub oil into your scars or support you as you shape a new life plan.

I am a great believer that the more positive I am when I embark on a new course of treatment, the happier I’ll be both going through – and at the end of – it. That’s why I decided early on that I needed to find a place to go where I could be treated (in a pleasurable way), supported and encouraged to rebuild my body and my life (with not a needle in sight). The good thing about living in London is, it didn’t take me long to find it. It’s called The Haven, and I have just spent the day there exploring the wonders of Qi gong and discovering a few nutritional secrets – and surprises.

Haven by name and haven by nature, the centre is designed to help anyone affected by breast cancer. Here, deciding your treatment plan is less about the size of your tumour and more about whether you’d prefer to try a bit of homeopathy, Shiatsu or craniosacral therapy. Although there are currently three centres, this is a charity with no geographical boundaries. The therapists will skype, call, email or meet in their attempts to reach as many patients as possible. It’s the care that starts when the NHS consultation room door closes.

I learned some interesting things today, not least about blood sugar management. Here are a few fast facts to tease your palate:

1)    Cinnamon mimics insulin (will be sprinkling more liberally in future)
2)    The health benefits of turmeric are only felt by combining it with black pepper
3)    Cooking with lard is not always a bad thing (in fact cooking in lard is considered better than cooking with vegetable oil)
4)    My desire to have eggs with everything could work in my favour
5)    Apparently, try a bit of raw butter and you’ll never go back
6)    Herbs and spices are a girl’s best friend. Not only do they pack meals with great flavours, they’re superb for the body too.
7)    I drink too much tea (and wine)

I came away feeling relaxed, inspired and with a burning desire to eat porridge for breakfast all next week. Talking of food, I can confirm there is actually no fat to be grabbed from my tummy currently (I appreciate this has been engineered, but it still felt good to hear it). The nurse this morning remarked on it and I was enjoying this news until I realised it wasn’t actually a compliment – it was a problem (that was where the giant needle needed to go). Thankfully, my left side stepped up to the table. All I can say to anyone having the Zoladex implant is don’t look at the needle (especially not if you’re not having cream to numb the area)!

Today taught me that it’s healthy to see more than the hospital waiting room. Fill your diary with things that make you smile and appointment times with only positive side effects and you’ll find you’re a lot stronger when it comes to facing the milestone meetings and sharp and increasing-large needles. You’ll feel better and, so too will the team dedicated to helping you get through each treatment stage.

Let the hospital save your life and the Haven (or an equivalent near you) help you get your life back.

NB: In case you’re interested, we got seven embryos. We may never have to use them, but they’re in the freezer for the next decade!

Breast cancer lesson number 41: The injecting is worth it

Eight has always been my lucky number. And, I am delighted to report, it seems to be not just lucky in life, but lucky in producing life. That’s right, the surgeon and embryologist have managed to extract eight eggs. By lunchtime tomorrow, we should find out how many of these eggs have been turned into embryos. There’s a one in 20 chance it will fail, so let’s hope the odds are in our favour this time after so much bad cancer-related luck.

The egg collection procedure (or what I saw of it) is nothing to fear. First, you arrive in your cubicle, get into a gown, foam slippers and a trendy mesh cap. Then you answer lots of questions, confirm consent and, in my case, pop a quick suppository in (it was either me or the anaesthetist doing this and I could tell by the look on his face that he’d rather it was me doing the honours). I obliged as he was the magic anaesthetist who’d managed to extract blood from me just a week ago.

The procedure room itself is the first theatre-like room I have ever seen (usually I get knocked out in a room nearby so I don’t get to see the monitors, team and sets of scrubs). Due to the fact it’s the first time I have been without my bra and corset for an extended period, they let me position myself on the bed, before attaching heart monitors, oxygen and a cannula. After a little gentle persuasion, the team took enough blood out for themselves and the oncologists so I avoided two blood tests today – and further bruising on my sore-looking left arm. Right arm was off limits as this second band shows.

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The last thing I remember is a syringe worth of happy relaxing juice and a further syringe of general anaesthetic. After that, they stuck a needle in my ovaries, extracted the eggs and fed me a nice cocktail of morphine and paracetamol. I was back in my cubicle with a packet of biscuits and a nice cup of tea in no time and, am now back home, back in the corset and rejoicing in the fact stage two is pretty much done. Just have to drink three litres of liquid a day (tea doesn’t count sadly) to flush my system – and wait for that embryo call.

You’d think after all this ovarian stimulation, my body might get a day off. Sadly, the oncologist I met in the morning had other ideas. My ovaries may have been swollen with eggs today for baby-making brilliance but, as of tomorrow morning, they’re going to be shut down completely until August (part of fertility back-up plan part two). Tomorrow morning, a lovely nurse at the hospital will be popping an implant under my tummy skin to release a drug called Zoladex. This clever drug (released over the next four weeks, after which I will need another implant) is designed to send me into a fake menopause. Chemotherapy can’t kill something it thinks is already dead. While I can’t say going through the menopause twice (first time at 32 at the same time as chemo) is particularly attractive (just imagine the combined side effects), if someone gives you the chance to protect you’re ovaries, you’ve got to take it. I will be well-versed in hot flushes when the menopause happens for real, that’s for sure.

As well as putting my body through five Zoladex implants, there was one further drug-related revelation in oncology. It seems that because of the fact the cancer had spread beyond the breast and into tissue surrounding the lymph nodes, I will be taking the anti-oestrogen drug for 10 years rather than five. This means that the end of treatment will be 2024 at the earliest! The good news? We should be able to come off it to try for children before the 10 years is up. Sounds a bit like extreme family planning to me.

With the eggs out, the countdown to chemo is now on. April 2 is D-day (or destruction day) and 31 March the day when the PICC line goes in (meaning four months without blood test needles). Stage three is in sight at last.

So, let’s hope we get those embryos in the freezer and let’s hope cancer doesn’t take another chunk out of my femininity. Having taken my boob, it’s already got its eyes on my hair!