Well, it’s not fear of the known, more like – as Kaz says ‘The fact is you must face the known this time around with a gut wrenching feeling in your stomach, before the drugs have even had the chance to do that for you. It’s not exciting and it’s not something I had planned on doing again.’ *Oh, and check out #TrueCancerBodies in response to campaigns such as #BosomBuddies.
I’ve had a lovely weekend, keeping myself occupied, meeting a friend to talk research:
View this post on Instagram
Attending a wedding that has slotted in nicely in between the treatments (yes, I still feel nauseas and overtired, my back is sore, but I could stay in bed and feel sorry for myself, or get out there, and sleep a lot!):
View this post on Instagram
And my cousin has come up to come with me to the hospital today/tomorrow, and we (well, I passed things mostly) caught the little bits of painting that needed doing in the hall, and put up about 85% of the things that needed to go up (I have about half my neighbours toolshed in the house at the moment):
View this post on Instagram
But, having hope not to be back in the chemo chair, here we are. This morning I have just taken my steroids (a friend calls these Dexy’s Midnight Runners, as there’s very little sleep to be had with these):
The hospital called this morning and asked me to go in at 1pm, rather than 2pm. So far as I know today is bloods, Herceptin (ensuring I don’t react to this drug – can damage the heart), cold cap fitting ready for tomorrow (yes, I know I said I wasn’t going to use it again, but it worked so well), and picking up a long-term sick-note (I’m expecting to work as/when I feel OK, thankfully I can work from home, and I’ve got things I want to be doing if I’m well enough). Tomorrow I have to be in by 9am, ready for the docetaxel and the perjeta, and then am watched til the end of the day to make sure I don’t react to the drugs. My cousin is with me til tomorrow lunchtime, then the lovely Suzanne is coming for the afternoon and taking me home – I do find the big silver lining of cancer treatment is the time I can sit and chat to friends – and I’ve got to know my neighbours very well as they look out for me!
We’ll have to wait and see how this drug affects me – I had paclitaxel last time – a gentler version of the docetaxel I’m having this time (although I’m hoping to have a reduced dose). It’s the combination of the drugs that I need, rather than the chemotherapy itself, so a bit frustrating to be landed with the heavyweight drugs (though hoping for a reduce dose) – once the steroid high wears off after Wednesday, I’m expecting to crash out (Netflix, here we come, if I’ve got enough brain capacity to focus)… side effects likely to include feeling like been hit by a bus (fatigue/muscle pain), lack of resistance to infection (though I’ll be having those lovely stomach booster self-administered shots) , mouth shot to pieces/lose taste buds (think about what to eat), hair falling out (hopefully cold cap will avoid for head, but leaves open to e.g. drippy nose, ear infections, etc.), hoping to avoid the stomach upset but we’ll see! People seem to say the nadir is 7 days afterwards, and, remember, I have tickets to Hamilton for 29th April!!!!
Expectation is that treatment will continue with:
- Drug combination: 7 May (after bank hols), 28 May (after bank hols), 17 June.
- When the docetaxel is finished, I start denosumab every 6 weeks to strengthen bones
- I continue with the Herceptin and Perjeta every 3 weeks via infusion.
This, and the denosumab, will continue ‘for the forseeable’ (we hope for a very long time, as the reason I’d be taken off is that the tumours have grown and therefore the drugs have stopped working – tumours shrunk or stable are what we hope for – otherwise we start a game of ‘whack-a-mole’ with any new tumours)
- I’ll be sent for an appointment to talk oophorectomy around halfway through the chemo, likely to happen around 2 months post-chemo
- I’ll have regular scans – I’ve lost track of how often, I think around every 3 months (not sure if those are full body scans, MRI scans, CT scans, DEXA scans, or a mix of all those, and probably heart scans too).
My gym have given me 3 months complementary membership, til mid July, so I can go and attend odds/ends of classes on, probably ‘the good week’ (no swimming because of infection risk), and I have nearly the whole of August booked off work for annual leave – culminating in Greenbelt (no, I’m not camping!) – I’m seeing if I have enough £ to do my bathroom (tell you, planning house sorting gets you through all sorts)… and if anyone wants to come help with gardening feel free – otherwise just keep offering chats (online/offline) – just we have to be flexible! Looking forward to seeing Natalie Collins on Weds, then I think it’s crash out for the week! Thanks everyone for messages!!!!
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.