I’m super tired. Today was the day that I start on another round of treatment, an injection to be had every 28 days, known as Zoladex (I’d been sent a leaflet by Breast Cancer Care to read a couple of weeks ago). My cancer is fed by oestrogen and progesterone, so my oncologist wants it out of my system as much as possible: although the chemo will apparently already have ‘aged my ovaries’, I’m still young enough to be peri-menopausal, and they want me to be post-menopausal. I had a blood test a couple of weeks ago, and apparently some kind of oestrogen was at levels around 2000+, and they need to be around 70.
I started on Tamoxifen before radiotherapy started. It’s a daily tablet, which most people take either first thing in the morning or last thing at night (because it’s easier to remember then). It’s designed to stop oestrogen binding to any random breast cancer cells still potentially floating around the body, despite surgery, chemo and radiotherapy. I’d originally been told that I would take this for 10 years, and not about anything else, but one thing you have to learn with cancer treatment is to be flexible, because things change depending upon test results, and how you respond to different medications.
Within Facebook groups, there is a lot of discussion about when is the best time to take this (it doesn’t matter, whenever you are most likely to remember, although some people find side-effects can be better managed if they change their time – but what works for one, won’t necessarily work for the rest). There is also a lot of discussion about brands – they all have the same active ingredient, but will likely come in different coatings, which can impact different women in different ways. Again, what works for others, won’t necessarily work for you – I’m onto my fourth box, and three of them have been Relonchem, and one box from Wockhardt.
There are a lot of fears about taking Tamoxifen (as there are in starting any of the new treatments, and inevitably we hear about the worst side effects online, as people are seeking help in difficulties). As with everything else, just went for it, and waited to see what would happen. I felt really sick for the first couple of weeks, and then everything settled down. Changing brands doesn’t seem to have impacted me either, so that seemed good.
The Zoladex is for 5 years, and will be injected every 28 days. I’ll need to pre-order it, and then book an appointment at the GP practice for a nurse to inject it – alternating between right/left sides of belly button (for my own notes, we were right side today!).
This morning was an early-ish start, after observing ‘starvation’ since last night. It was time to find another waiting room, check in, and pop myself into whatever free seat I could find whilst I took a ‘bloods token’. I was then called in to have my blood pressure done (those electronic ones are fierce), before returning to the waiting room where I’d missed my bloods slot. I was nervously looking at the bloods box, as there appeared to be 8 different tests required, and I am so difficult to get blood out of. *I miss my port*! Once I was in, I looked at the 5 vials that needed filling, and the tiny vein on the back of my right hand which is the only one that seems to give anything… we got 4.5 vials out, so hoping that’s enough (I don’t find out the results from those today).
And if you’re wondering about the #WaitingRoomFeet, wouldn’t it be “fun” if that would take off. There’s a lot of waiting, it avoids getting anyone else in your picture, people can cheer you on whilst waiting, and all sorts…
Once those tests were done, it was time to head back into another clinic to wait to speak to the specialist nurse (and watch a bit of Homes Under the Hammer whilst waiting, of course!). We talked through what Zoladex is for, why it’s of value. She explained that 4-5 years ago, I would just have been put on Tamoxifen, and that would be that. After the SOFT and TEXT trials, the consultants at The Christie unanimously decided that Zoladex should be used for pre-menopausal women, and so here I am. She explained that the benefits are lesser from age 40 onwards, but there’s still a 2-5% benefit, and I’m all for that. If the oncologist thinks it’s going to help, despite the side-effects, then let’s at least try it. We talked through other medications and things that may impact, the leaflet had outlined possible side-effects (hot flushes, fatigue, insomnia, weight gain, acne all seem common – hurrah), and were told to ring (or hurrah, email) with any symptoms that were bothering, as there’s probably things to try to help manage that. Had to fill out a form about my mood, and any menopausal type side effects – which apparently I’ll do every time. We discussed EMLA cream (which needs to be put on an hour before the injection) to help numb the site, and agreed that the first injection would be done today. A form was put in for a bone scan, as osteoporosis is a possible risk, so that’ll be coming up (and phew, it doesn’t require a cannula, just 10 mins in a machine at some point)!
I was then sent to the pharmacy to activate the prescription for EMLA cream and zoladex, and sent off to have an Echo in another department – that was pretty swift, and I was told anything in the 400-500 zone is good, which mine was, so was allowed to go and get some food (note do not bother with these, or these M&S crisps!), as the prescription would be about an hour!
The prescription took just over an hour to arrive back (very busy pharmacy serving the whole hospital plus hundreds of outpatients!) so I took that back through to ‘Department 35’. Was taken into another clinic room, another nurse popped in, said I could have the cream – but once I said I’d had my drains out after surgery without anything, she said this would be easier, so rather than waiting another hour for the cream to numb the area – we went for it! To be honest, it was less painful than the blood tests (where the needle had been wriggled quite a bit to encourage the blood out), and then it was done and we wait and see the impact!
I was then shown how to apply the Lidocaine cream, which I’d been given instead of EMLA (apparently EMLA is easier as comes in self-contained packaging, whereas the Lidocaine need to find large plasters to hold in place, etc.) It needs at least an hour to work, and is then effective for up to around 5 hours – and ended up looking rather like this:
I could have gone then, but once again, a friend who we’d got to know each other as our bloods, etc. appointments always seemed to be scheduled at the same time, was also in for appointments and waiting for the pharmacy – so we popped off to the canteen and chatted through things – both cancer and non-cancer related – whilst enjoying some curly fries (ah, memories of St Johns, Durham there!) until her pharmacy order was ready:
… before I popped off to find a few more #BeeInTheCity:
and home to finish reading a book, write this up, and get ready to crash into bed! It’s always surprising the emotional toil these things take, the anticipation, the wondering what the side effects are going to be – as much as the physical things. Weird way to spend a day of annual leave, but thankfully ‘working from home’ tomorrow – and I’m tired enough to go to bed soon!
Apparently I’ll have another appointment in about 8 weeks to see what my bloods are doing, and then we’ll look at swapping to Exemestane (not anastrazole as I’d previously been told), to replace the Tamoxifen (I think this is all age related). I’ll then have to come back in 8 weeks after that for more bloods… and if that’s all good, then only ‘once a year’ for this particular clinic.
Cover image from Readers Digest
Dr Bex Lewis is passionate about helping people engage with the digital world in a positive way, where she has more than 20 years’ experience. She is Senior Lecturer in Digital Marketing at Manchester Metropolitan University and Visiting Research Fellow at St John’s College, Durham University, with a particular interest in digital culture, persuasion and attitudinal change, especially how this affects the third sector, including faith organisations, and, after her breast cancer diagnosis in 2017, has started to research social media and cancer. Trained as a mass communications historian, she has written the original history of the poster Keep Calm and Carry On: The Truth Behind the Poster (Imperial War Museum, 2017), drawing upon her PhD research. She is Director of social media consultancy Digital Fingerprint, and author of Raising Children in a Digital Age: Enjoying the Best, Avoiding the Worst (Lion Hudson, 2014) as well as a number of book chapters, and regularly judges digital awards. She has a strong media presence, with her expertise featured in a wide range of publications and programmes, including national, international and specialist TV, radio and press, and can be found all over social media, typically as @drbexl.