So, last Friday, the ‘dreaded chemo’ started – and yes, I was pretty much dreading it. Every time people have said ‘you’re recovering really well’, my return was ‘well, chemo is the bit I’m actually dreading, so recovering from the surgery doesn’t seem such a big deal, just glad we got clear margins on the tumour, although the scanxiety was a stress’.
I am particularly dreading the fatigue and any possible ‘chemo-brain‘, but some people respond well to chemotherapy, and some don’t, and we just have to wait and see over the next few days/weeks/months what the side-effects might be, but as I was told at the beginning – don’t think about ALL the treatment, concentrate on today, and the next appointment.. and call upon the ‘crumpet of courage’:
— Dr Bex Lewis (@drbexl) November 30, 2017
Had seen the physio on Monday, and she was happy with the movement that’s coming back in my arm, and now the seroma has finally stopped, and showed me some new exercises to massage the scar tissue back into smoothness. She also encouraged me to see what was possible to continue – e.g. walks + mini circuits whenever I feel well enough during treatment to go with the strength I’d been building up over the past year with cycling, hiking and walking – and that joining of the gym for 2 weeks before diagnosis!
Treatment dates are couple of paragraphs into an earlier blog post, and the last post looked at the BCC weekend away – really helpful, and lots of tips and encouragement. Messages of encouragement have continued online and in the post – really make a difference! Up until the day before treatment, I was largely concentrating on an academic journal article I wanted to submit before treatment started – academic articles seem to have – what – a 20% success rate – so we’ll see how it lands, but it’s got something, so will rework if not this one!
Friday 1st December 2017
So here it was. The day to start the next stage of treatment. I’m, what, 10 weeks on from surgery and recovering pretty well from that. The wonderful Suzanne, who I met at Manchester Met, was my calming company for the day, and collected me 7.15am with some chemo humour ‘all ready to be pumped full of poison?’, and sat with me at The Christie til I went in for Portcath – with promises to be back for chemo!
The process of fitting the portcath was explained in the video in the recent post, but as I have got used to, name/DOB/first line address and re-check of key medical questions, then sign this cheerful document – and by about 8.30am, ready to go into the ‘procedure room’:
The specialist and accompanying nurses were lovely: tops off (mine, obvs, not theirs!), covered in one of those fetching blue paper surgical bed-sheets (also me, though they also had surgical gowns in same attractive fabric). Some people have sedation before the treatment, not me apparently – just a local anaesthetic – just after which the hospital fire alarm went off. They said the tone meant not in the dept – having originally said Friday morning is usually a test – and that they’d had to evacuate the week after the ward was built. Thankfully after about 5 minutes we were told it had been pressed in error – phew! I was asked to move head/arms into various positions as the TIVAD/portcath was inserted – very weird as could feel skin moving around, but no pain! The loop went in easily into the neck (apparently usually the more difficult bit), but apparently I have ‘lovely skin’, but ‘a bit tough’, and the second part has to be pushed in … the first one got bent against my skin, second one went in! Not long after that, stitched up, and by 9.45am it was all done.
Was taken to a side room, given a cup of (raided colleagues) hot choc with caramel + a biscuit to get the sugar back up after all the adrenaline mixed with anaesthetic, then told to come back next week for stitch removal. Told to expect bruising, so take paracetamol, leave the dressings on once they are finished post-chemo til next week on the chest, neck one can come off Monday if wanted:
Tiny hole in the neck, and yes, that’s the loop that can be (currently?) seen/felt leading to the chest, where the blood tests are taken from/chemo pumped in. Apparently it can stay in for life if it continues working/is flushed every 4 weeks. I’m hoping it starts to ‘feel forgotten’ by my body soon.
In between the portcath and chemo appointment, I’d already picked up my voucher for a wig, so decided to go and see what was on offer. Within the free range it’s pretty limited, and if I hadn’t got given this last weekend..:
I would have gone for:
But we went for something a little more colourful (that I need to learn to style), along with a few wig care products:
Can take it in for a (non-reversible, obvs, trim if I want!)
So cold-capping – if you want to read about the machine I used, and a 6-ish minute video presented by scientists – check out the Paxman machine, that I’m using. Basically though:
The damage that chemotherapy causes to the hair follicle can be alleviated by using scalp cooling, also known as the ‘cold cap’. It works by reducing the temperature of the scalp by a few degrees immediately before, during and after the administration of chemotherapy. This in turn reduces the blood flow to hair follicles which may prevent or minimise the hair loss.
But, to have a look at them. Here’s the coolant machine (good to see Walk the Walk logo – which I did in 2005, and my lovely sister-in-law Pippa is doing next year – feel free to support her on my behalf):
Then here’s the headgear awaiting final-fit – it includes coiled tubes for the water (look rather like a brain), and then a kind of rugby layer on top to get a close fit to the head, and give it the best chance (I’ve been variously told that fine hair means will get close to follicles, and could work, and that thin hair goes so patchy, will end up shaving it off and going bald anyway – so let’s see), and the tubes to connect it to the coolant machine (clearly v privileged that Christie, alongside Royal Marsden, top cancer hospital in the country, and provides these – some places it’s not an option). Hair needs to be dampened and covered in conditioner to give it best chance:
And here it is on (think we ended up with large brain, small cap – make of that what you will) – I think this was it was resetting to room temp towards the end:
So, what was it like? Well I started crying as soon as the water started pumping around my head. Have to wait 5-10 mins as the temperature reduces, and had been warned that (variously) 10-15-20 minutes after starting would be how long you’d need to just ‘bear with it’. Recommendations: headband over forehead and ears to reduce pain there, and paracetamol half-hour before. They both helped, as did the 10 minutes – because – oh boy – was that first 10+ minutes hard! By about 3 minutes I was seriously considering removing it – it’s like having several ice-cream headaches at once whilst standing in a freezing cold shower.
The tears were for 1) Why am I doing this, when there’s no guarantee that it will work, it’s just hair, and I’ve got to do this 11 more times after this one? 2) I could see the chemo drugs being lined up on the trolley and it ALL BECAME REAL! The cold cap has to go on 30 minutes before the chemo drugs are injected, and for the mix I have, stay on 90 minutes afterwards!
The nurse gently pulled the curtain around my chair, and Suzanne talked me through why, why not, and I decided to stick with my plan to see what it was like up til around 20 mins. Before then (I think), it started to feel like a heavy wet towel sat on my head, and that was not massively problematic … so I kept it on all the way through…
Apparently hair can start to fall out around 10-14 days, although some say hasn’t started for them til just after their second chemo. My prayer, however, is if it’s not going to work/be really patchy, I know before the next one! I guess I’ll know because my eyebrows, eyelashes, nose-hairs, and basically any hair not on my head – will go, and the head hair may stay… let’s see! Ah yeah – so to give the hair it’s best chance – don’t wash more than twice a week and then only in very simple shampoos – or I used Watermans today!
Chemo 1: EC
Before all the cold-capping started, I was already in the chair (looking out on lots of other people in other chairs/beds), talking through the process again with the ward nurses. Again, we referred back to the treatment paperwork, and the possible side-effects (cheerful, again), and the issuing of anti-sickness medication/steroids for the next couple of days (sorry for the first Emend that went bouncing across the floor – no ‘3 second rule’ in this ward where white blood cell counts fall very low – sorry NHS budget):
To relax from that I had a couple of coping strategies! One – the next drug in particular will be harsh on nails and there’s evidence that dark nail polish can help prevent light-access and reduce the reaction… yeah, I wouldn’t look too close:
And accompanied by my companions – Poppy and Turkey (yeah, we thought hard on that second name, very long in-joke from the friend who sent it), + one of my beautiful/colourful crochet blankets, and minions socks:
Otherwise, the hospital also provided a foot massage from a very lovely member of staff (bit horrified I can’t remember anyone’s name aside from the staff nurse who first talked to me, but all a bit of a blur) … and we talked about travels – and I drank a lot of water – intention is to flush the chemo drugs out asap as they do their jobs then you want the toxic drugs GONE. The actual treatment itself is quite an anti-climax (as I’d heard from others), as the ‘EC’ is infused via a syringe by a nurse who sits with you throughout the treatment (from 4 massive syringes – 2 QUITE red). With a nurse on one side, someone massaging my feet for 20 mins, and Suzanne chatting away to me on the other side, the chemo itself was done, then it was the countdown to take the cold cap off. The cold-cap timer stopped working at one point – thankfully Suzanne had just got back with hot choc/choc buttons when it started, so we knew what time that was! At the end, have to wait a bit longer for it to regain room temp before it comes off – otherwise it’ll pull your hair out in icicles. Was a bit disappointed that at the end – no icicles to Instagram with a joke about ‘Frozen – let it go’… after spending 6.5 hours in this chair – hopefully less time next time!
The chemo ward is QUITE warm, though the blanket helped as cold-cap makes whole body cold. Lovely to meet someone from YCBN group (the public page you can follow) as I posted something on there, and then she came and said hi (yes, you can move around, even whilst attached to things, though I didn’t). At the end, it was flush the port, layer up, including a hat, head outside, and Suzanne gave me a lift home (recommendation from hospital is don’t drive to own chemo appointments) – and some nibbly snacks to get me through the next day with limited energy to cook/wash up, etc.. Quickly unpack everything, PJs on, and time for bed!
After the Chemo
That evening was, erm, not fun! My body had been through a lot that day, so I don’t know how much easier it would have been without the portcath insertion the same morning – that’s left the expected bruising! The nausea was horrendous that first night (though thankfully not sick) must more water next to the bed … and the steroids keep you awake too – loved this tweet from a friend on one of the nights:
‘St Eroid, patron saint of sleeplessness ?. Dexamethasone aka Dexies Midnight Runners. Hope sleep does come.’
When admitted, one is given one (maybe more!) cards saying ‘I am a Christie Patient’, partly for our own use, and partly to show to any medics, A&E for admissions, etc (also cheerful, and I’ve seen quite a few people admitted on the Facebook groups … hoping not to be one of them…):
I did call around 3.30am after ‘only’ getting 3 hours sleep ‘so far’ as to whether I could also take left-over anti-sickness meds from surgery – nope, but take one of the extra ones early. I then slept another 3 hours, took more meds, then another 3 hours! Glad I got this, because since then I’ve not had more than 3 hours the next night – shattered but still ping wide awake! Can’t find the Giphy a friend sent this morning – but this gives the gist!
I am both hungry but feeling very sick when eating, tired, but unable to sleep, so this is fun – and lots of hyped up ‘energy’ which is exhausting! The expectation is now that the steroids and main anti-sickness meds are finished, next couple of days could be ‘a big crash’, but we’ll see! Have to keep taking my temp, drinking lots of water, and I’m watching Netflix (still Once Upon a Time), films (The Shack most recently), and listening to Harry Potter on Audible (will try reading a book again soon!) + online convos/ encouraging messages and poems – we think I’ve avoided ‘Roid Rage’ and instead got ‘Roid Ramble’! If you’ve got this far you’ll probably think that! Managed to get out for a short walk both days (day 1 – under 1km; day 2d – 1.6km)so far as encouraged by Macmillan if possible …
District nurse has been round both days to inject with Filgrastim to encourage white blood cell growth (which can then cause side effects of bone pain as bone marrow over-works). but has shown me today how to do that myself – first 7 days post-chemo, for first 3 rounds of chemo only!
Oh, you know I said the first 2 syringes were quite red … those of you who drink Berocca will know what I’m going to say – very bright red wee for a couple of days! Also got pile of (not) random medications suggested in FB groups, lots of lip-salve, body lotion, etc. given by others to cope with whatever side effects might (or might not) come! Got one of these, to carry things up/down the stairs, lots of cheap bottled water and pint glasses next to bed, sofa, strategically placed medications, silk pillow case for head.
Finally, for #funnynotfunny, this has gone up in my window – apparently I’m being ‘too British’ in not mentioning that sepsis/death is a possible side effect, and someone else mentioned say – appreciate ironing, cooking, gardening – so maybe it’ll get tweaked further:
Now it’s time to attempt sleep, or failing that, more Netflix or Audible. Side effects for EC = typically in Week 1) Rubbish, Week 2) OK but lowest immunity, Week 3) May be well enough to go out and do some ordinary stuff like meals out, before the next one starts!
The day after chemo, amongst many lovely messages, more cards, lovely to get this tweet from Liz, and seeking more reviews on Amazon for my #KeepCalm and #RaisingChildren books, if you like them (Amazon tends to boost in the search rankings any books with 50+ reviews)!
*As always, may be slight edits/tweaks to this as I spot typos/remember little things that might be helpful for those who want to know, or me to remember!
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; second edition in process) 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.