[LIFE] Five weeks of Paclitaxel Down #BreastCancer

So, we’re over halfway through the Paclitaxel … five down, four more to go (including, hurrah, birthday chemo this coming Friday… hopefully buying myself many future years!). Getting increasingly tired now, although still seeking to maintime some kind of social life…

The main side effects of this drug are in many ways better than EC (which was particularly notable for dizziness/nausea for at least the first week), are fatigue, random body aches and pains, serious indigestion, peeling mouth – lots of boring little things combined with an unhealthy dose of apathy on occasions… and other occasions boosts of inspiration! So, essentially for the last 3 weeks, here’s a photo diary … there’s other pics on my Instagram too!

Week 3

Half-term, and one of my longest-term friends came to join me (I still remember the day that we sat, one seat apart, British style, in our first History A-Level session … and from that conversation developed a long-term friendship) for part of the week – very relaxing for both of us I think!

This was the week that I learnt to use patient transport – very straightforward on the way in, very delayed on the way home:

Week 4

Thankful for Deirdre accompanying me again! Very relaxing company, and in conversation we covered all kinds of topics – including faith, technology and all sorts…

Week 5: A Day in the Chemo Unit

At the end of this one, can think, we’re officially on the countdown towards the end of chemo on Good Friday!! The snow created havoc for this .. my (2nd?) cousin was coming with me from Birmingham way, so that didn’t happen. My next companion then came down with a cold (and if you’ve seen Call the Midwife tonight, you’ll see why chemotherapy units are so keen to keep us immune-safe), but thankfully another friend cancelled a couple of meetings, and kept me company!

The day started early – as I needed patient transport again … so I was told to be ready for 7am, although nothing turned up til 8.10am! Was a little late for bloods, but they seem to build in a little time flexibility for this. Every 3 weeks I get to see the oncologist so have bloods done on a Wednesday, on the other weeks, I have to come in 2 hours before the chemo chair is ready and get my bloods done, to ensure that I have enough white blood cells bouncing around (I think) so can withstand the treatment. Was very amused to get 007 as my ticket number in the queue for bloods:

Time for bloods bingo … looking forward to breakfast afterwards!!

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Slightly less amused to find that my port appears to have turned a little bit… praying it at least holds on for the rest of chemotherapy, and was expecting to keep in a little longer, but we’ll see! Anyway, with that lovely chunk of time to wait, I headed off for the refectory (rather than the M&S or WHSmith in the waiting area of the Christie), ready for a full on breakfast to see me through much of the rest of the day:

I was then joined by Naomi, and we picked up hot choc and Percy Pigs for me to take to ‘the chair’. They were just getting the chair ready, and today had a new nurse – Richard, who like all the nurses I’ve met at the Christie – very friendly and chatty – you need someone calming as you’re being plugged into receive the dose of poison! I grabbed this shot when there didn’t seem to be any patients in view, and as the drugs had finished, and I being ‘flushed’ with saline as the cold cap continued its work.

Final flush #chemotherapy

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I do now know that if time’s up, I can disconnect the cold cap from the wall and let it start it’s defrost (so it’s doesn’t pull my hair out), but I can’t disconnect myself from the needle plugged into the port. It’s sometimes difficult to get hold of a nurse at the end of this process, so, as with so much of ‘the cancer journey’ it’s about trying to be patient whilst WAITING! We enjoyed varied topics of conversation, and as Richard said Naomi went above and beyond continuing the foot massage started by Fiona!

I decided not to wait around for hospital transport as I could order a cab via the Lynx App for around £10 – otherwise expect at least a 90 minute wait before something is organised. I just wanted to get home, snuggle up…

Very chilly downstairs (I like a cool house, but brrrr), so thankful for clean sheets to fall into …

Took a store of food upstairs … annoyingly first took up the tin opener and the spoon, but forgot the custard I wanted (yes, cold, yes, straight from the tin)… so wouldn’t need to move again too much!

Random post #chemotherapy goodies ….

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Despite the steroids, I fell asleep around 8,30pm (maybe), and woke around 6.30am ….

Decided it was worth braving the cold for crumpets (thankfully I’ve not lost my tastebuds although that’s common with this drug)

I then made it out that evening, having slept for another 3-4 hours in the afternoon – and really enjoyed celebrating Stuart’s 50th! And if you’re wondering how my hair is holding on (even the nurses keep exclaiming at how well it’s doing… though I’m getting bald patches in my eyebrows, and definitely less eyelashes than usual … very watery eyes, hurrah).

Made it! Stuart’s 50th #happybirthday #sleptallafternoon

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And today, spent some lovely time with another friend … so must chill a lot more tomorrow

We keep on chugging along! Once chemo finishes, then there’ll be a 2-3 week break, then I will start radiotherapy for 3 weeks + start tamoxifen for 10 years (and I’ll also have that new kitchen installed!).

[WEBINAR] on Digital Health with @DigiHealthGen

This evening I joined a webinar on ‘Digital Health’ from a Wellcome funded project. Here are my rough notes from the session:  

  • Young people are Uusing the internet to check out symptoms, working out what can/can’t do, rather than going to the GP.
  • Wellcome Trust project – just starting – re digital health generation. Emma Rich (sociology/education) and Andy Miah (currently in Korea doing stuff with the Olympics). Also Deborah Lupton – self tracking, quantification related to health, etc.
  • Students, teachers and families are the source of data collection
  • How are young people engaging with digital? Healthy citizenship, etc
  • How digital is shaping how we learn about tech and shape health practices.
  • Digital health – expansive area – instagram accounts re calories, etc. What are people doing, and what role can it be?

  • Health services can propose certain services that people can use, but people can use whatever platform they are going to use – going to use Whatsapp for data collection… not pulling people out of their habitus (less artificial)
  • Mobile is driving activity across all levels – can see this as Olympics, Samsung – collecting data, power walls, etc. already happening in some gyms, etc.

  • What data are people comfortable collecting, and what data are they comfortable sharing amongst themselves? Can create degrees of anxiety if not physically active… [Sounds like fitness evangelism….] Intimately connected to mobile devices.
  • This project is particularly interested in ‘healthy lifestyle’ technologies, rather than medical tools that e.g. track glucose … Exponential growth – difficult to navigate the range – 165k+
  • Health knowledge being produced via digital media, can also produce own health data about themselves – where does that go, decisions about future healthcare/ insurance, etc. What impact does that have on self-identity, health behaviours, etc.

  • Project came as a result of concerns about the growth of health technology, and how affecting young people’s health, etc. Data from local schools, what age, what technology, what media do they find most helpful, etc. 8-11 year old owning first digital device, though access before that…


  • Now into 2nd phase, going into 3rd phase, going into more in-depth work, ethical issues re reliability, know what’s safe, choices about what to use, what about the information they use. 3rd = live phase talking to young people as they use it, design of tech itself and how they use it… Interest in inequalities, and the context in which digital engagement takes place… technology seen as removed from rest of social/cultural context – how do e.g. family shape use, where are they when they go online, how does it shape what they use online… online/offline interaction…

  • Willingness to share (quite private) data, subjects of surveillance (what choices do they have about data being collected about them)… e.g. through digital toys – see Ben Williamson… using mobile to learn about health, but 52% survey participants were using an app to track their diet/fitness in some way – Instagram and Snapchat favourite platforms to learn about health…
  • Challenge/opportunity – who are people prepared to share data with … relations of power, who has access, etc who shares devices with other people, access/literacy/inequality… Concerns re coercion, questions about social justice – e.g. if can only get health insurance if sharing physical activity … already a live issue…

  • Area becoming increasingly complicated/expansive in its breadth. AI seen as the solution to much for the NHS? FDA approved a digital drug – medication with sensors in it – tells people how that drug is working! Questions about who owns data, what we can do with our data, etc. esp as we are limited in our access to data. Do younger generation feel more empowered, or co-erced into that world…

  • Do people go onto these kind of apps from ‘tabula rasa’ – or because they have a problem? What are the motivations – v. different – wide range. With young people … typically an issue/concern will look to digital fora for a solution.
  • Do young people share more than older people? Makes people more confident to go to GP, etc. Young people = normalised = used to tracking, engaging, etc. online, so health is not an unusual area for that …
  • Mobile devices are normalised, part of everyday life, but schools are pushing people away from using that… Schools may be using apps instead of other resources (e.g. mental health app) – how are they being drawn in in ways they haven’t before…
  • Cultural divide … secondary school now – grown up with iPhones, but teachers haven’t… A year away from digital, and it’s all changed…
  • How do you deal with the fact that major things may be missed? A lot of work connecting patient groups together … support groups = adult things, what do they do under 18s to find support? What about benefitting from the insights from 1000s of drs, rather than one human dr … long shift to go there.. NHS able to keep up with the use of this data, etc.?
  • Fatigue/boredom, 6 weeks on, people tend to abandon all kinds of apps… BIG question – ownership of own data, etc… Some only see it as needing a lock on the phone, rather than the bigger picture of what happens to data, etc.
  • More data of different kinds, can increase anxiety amongst users … difficult for many of us to make sense of what that data means… e.g. labelling overweight, etc. damaging for young people, lead to crash diets, etc. Challenging issue for the future – so many apps, and some collecting data before we even choose to do so.
  • Sleep, food, activity levels, etc every part of our life can be quantified in some way.
  • Fake news/health – aware of it becoming a big issue in last 18 months … not looked explicitly. Health related info e.g. fitness, nutrition, etc. are a significant source of fake news… diet, etc massively contested before we even get to the digital, so a challenging environment to be in ..
  • Young people reducing time going to websites, spending more time on apps, data policies unclear on how shared, etc. locked into certain spaces… Don’t know about the journey that someone goes through on a particular app… big gap in our knowledge… Anxieties – young people avid followers of e.g. fitness bloggers, trendsetters, etc. very difficult terrain to manage… demonstrating that you’re the ‘right healthy citizen’ and ‘doing the right things’ – the data and the popularity!
  • Much more visually investigated … journey into information, proliferation of channels, and no central channel which has authority. Big shift about how receive information about all kinds of things – including health, who is the voice of authority in health… [Notion of who is an expert … ]
  • Earlier research – being measured/weighed – led to hyper (self) surveillance … comparing/contrasting – ways of standing out … thinnest, healthiest, etc.. Heavily moralised…
  • As healthcare becomes more reliant on data, becomes locked into propriety systems, difficult to get out once in them … old fitbits chucked in a drawer! How to access own data, and what is happening to their data … will young people rise up and not share data any more – ‘this is the way of life’..
  • Where does the individual fit in that, where are govt discussions, etc. Priority access to healthcare if a ‘diligent healthy citizen’!
  • Should the NHS be central to digital health – is there enough joined up thinking, do they understand the issues, or are we going to have to hand data over to private companies. NHS tech challenged = not a secret! Big data companies have worked out how to make platforms that are easy to use, etc. – much more agile than NHS that tends to make use of tech just as it’s becoming redundant.. are we going to engage with health information differently?
  • Interesting – some young people still looking to the NHS for guidance…. Still the kitemark/rubber stamp.. not a library of recommended apps.. Reviewed policy documents re digital health, limited understanding – assumes that digital is empowering and that all have access, can navigate it… beyond whether can afford ‘internet access’! As gap widens, young people will experience health differently… Organisations that might push apps, etc. onto young people – how equipped are they to use them? Digital health = always the solution.

[LIFE] Week 2 of #Paclitaxel: Thinking wigs and enduring the Cold Cap #BreastCancer #Chemotherapy

Today is 6 months to the day since I went to visit the Dr to query a possible lump in my breast. I’m now onto week 2 out of 9 of the second chemotherapy drug – #Paclitaxel. I had hoped initially that I wouldn’t need the cold cap for this drug (especially as I have to have it every week), as I thought hair grew back … but the potential side effects still include hair loss (others who’ve had it, their eyebrows/eyelashes have fallen out 3-4 weeks after finishing treatment, so still got that to look forward to!). So… I’m sticking with cold capping!

Wig Styling

I picked up a wig on the first day that I had chemo, although I wasn’t quite sure about it, and knew that if I was going to wear it, it would need cutting into shape! My hair has actually been holding on really well – back to that in a minute – but I contacted My New Hair, a charity run by Trevor Sorbie, and last week I managed to have an appointment with Vince.

I was invited to the Manchester salon, a friend came with me, we were given hot drinks (lovely hot choc), before being taken in front of a mirror. We were offered the option to be screened off, but it’s all part of the experience right… I had an hour with Vince, and in that time he was able to sort out two wigs. He was great at giving advice, cheerful and chatty, and at the end, here I am in my newly styled wig:

A post shared by Bex Lewis (@drbexl) on I wore that wig for the rest of the afternoon … I kept moving it around quite a bit (and it was better once a wig cap was underneath), but should my hair fall out, I now feel like I’ve got a couple of options!

Cold Capping: What is it, and does it work?

Within the Facebook groups, there are always those debating whether to cold cap or not! Cold capping basically freezes the hair follicles to seek to stop hair loss, or as the American Cancer Society puts it:

Scalp hypothermia is cooling the scalp with ice packs or cooling caps (cold caps) for a period of time before, during, and after each chemotherapy (chemo) treatment to try to prevent or reduce hair loss…. The theory behind scalp hypothermia is that the cooling tightens up or constricts blood vessels in the scalp. This constriction is thought to reduce the amount of chemo that reaches the cells of the hair follicles. The cold also decreases the activity of the hair follicles and makes them less attractive to chemo, which targets rapidly dividing cells. This could reduce the effect of chemo on the follicle cells and, as a result, prevent or reduce hair loss from the scalp.

As you can see from here, the same day as I had the wig fitted, my hair is hanging on well (having cut it into a pixie cut the week that I was diagnosed):

It’s not got a lot of shape, because one is told to leave cold capping hair alone, but even the nurses are amazed at how little hair I’ve lost. People are always asking if cold capping works, and doctors apparently expect it to work for around 50% of those who try it, and regard 20-50% hair loss as a success!

Cold Capping Tips

There are a number of things that one can do to improve the change of success with cold capping, as mine has so far! It appears that one of the reasons my cold capping has worked so well is because my hair is quite thin/fine so the cold cap fits well, but here’s what I have done:

  • Half-an-hour before the cold cap goes on (which is usually half-hour before the drugs commence), take a couple of paracetamol.
  • Ensure that your hair is wetted and coated in conditioner so that it is slick against your scalp.
  • Take a cloth headband to cover your forehead and over your ears, to protect them from the cold (it’s the roots and not the full length of your hair that needs coverage).
  • One of the key things is to ensure that the nurses fit the cold cap tightly, especially on your scalp. There is an inner lining that the freezing liquid runs through (that looks a little like brain coils), and then a neoprene cap that fits on the outside. Ensure this doesn’t move, otherwise bald patches are more likely.
  • When the cold cap starts, it quite quickly starts to freeze the head (that’s its job) – this I describe as rather like standing under an ultra-freezing cold shower whilst experiencing multiple ice-cream headaches! This lasts for the first 15-20 minutes, at which time I usually ask whoever has accompanied me if I can hold their hands whilst they take the burden of the conversation…
  • After that first period of time (17 minutes we counted last time!), the head starts to feel like like it’s wrapped in a wet towel and the cold cap can be largely forgotten.
  • Taking a blanket helps to keep the chills off – and if the hospital offers e.g. reflexology foot massages – take them up on that!
  • Good conversation with others, or music/a book if you’re on your own, will help you get through it… especially as the cold cap needs to stay on for 30-90 minutes after the drugs have finished being infused, which was around an hour for each of my drugs (EC was 90 minutes, paclitaxel is 60 minutes after).
  • You can be disconnected from the hoses on the cold cap if you need to e.g. go to the toilet – so the cap stays on, and you can wheel the chemo drugs with you: might be worth waiting til an hour or so into the treatment before drinking water (though lots of water is encouraged by the nurses).
  • A hot drink (hot chocolate for me please) can help keep you warm!!
  • Once the cold-capping has finished, allow another 15-20 minutes for the cold-cap to defrost, otherwise you’ll pull your hair out with the ice! A bit of a wiggle will tell you if it’s defrosted … or water trickling down your neck!
  • The nurses should make a note of the exact caps that you wear, so if they work, you can use the same one next time! You can read more about the Paxman Cold Cap, which is the device I use.
  • Ensure that you’ve a good hat to keep your head warm when you go home (with damp hair!)

To be honest, the first time I used the cold cap, it was because I wanted to be able to say I’d tried, then I kind of hoped my hair would fall out, and then I’d just get on with the chemo! Should I ever get a recurrence, I probably won’t bother – mostly because of the extra time involved, but I’m so deeply invested now …

Looking after Cold Capped Hair

Part of the reason my hair looks pretty flat and lifeless, is that we’re recommended to do as little as possible with hair. The recommendation to wash only a couple of times a week, but I’ve:

  • Washed it every other day (with chemo on a third day), using Watermans shampoo/conditioner, leaving it for 2 days after chemo.
  • When washing, I would gently pat the shampoo in, not rub the scalp, and then just let the water wash over me.
  • Pat the hair dry with a towel, rather than rubbing it, and then letting it dry naturally.
  • Brushing through only once a day with a wide-toothed brush.
  • No styling products added to the hair (as they pull at the hair)
  • Covered it with a bamboo cap overnight, and often a cap during the day, to stop me playing with the hair and inadvertently pulling it out.
  • Bought a silk pillow case, so that there’s less to pull the hair out.

I still see strands of hair falling out, but nothing much!


So Friday 9th February was Chemotherapy number 5 (number 2 of 3 in this round of paclitaxel). I get an hour of infusion each time, with a range of pre-meds… Apparently 1: 8mg of steroids, 2: 4mg of steroids, 3: 0mg of steroids – so maybe next week I won’t have a sleepless night the day after chemo (on top of not good sleep the night before), otherwise it’s a range of anti-indigestion (nothing’s quite hitting that) and antihistamines (why I can’t drive home as = drowsy).

Suzanne has been alongside from the start, and was great to have her company again, as well as a surprise visit from Emma, who had a meeting on site! There’s only supposed to be one visitor per patient on the chemo ward, but thankfully this seemed OK for a while!

A post shared by Bex Lewis (@drbexl) on Always a look of relief on leaving:

A post shared by Bex Lewis (@drbexl) on After Chemo

I was told that the effects of chemo would be cumulative, and I’m certainly feeling increasingly fatigued (not just tired), indigestion meds not really working (we have one more drug to try apparently), an overactive digestive system (though very grateful for no dizziness/nausea), random aches and pains stabbing at the body (but not enough to need pain killers), peripheral neuropathy, a mix of sleeplessness and long-sleeps is my survival tactic, although I’m debating doing short chunks of thinking on my research over the next few weeks, but meantime – enjoying the kitchen planning!

Unlike EC, where I was dizzy for the first week afterwards, I made it out to Aldi the day after to do some shopping (lovely steroid flush there):

A post shared by Bex Lewis (@drbexl) on On the Sunday, I managed to attend the final session of TEDx Manchester (thanks Herb for the ticket), which I hadn’t expected:

A post shared by Bex Lewis (@drbexl) on And today, continuing my pursuit of fresh air, we slowly ambled our way round Lyme Park:

A post shared by Bex Lewis (@drbexl) on Cancer: it’s not sexy, it’s not glamorous, it’s boring, tedious and takes a big chunk out of your life – and the effects don’t stop when the chemo stops! Here’s to 3/9 this coming Friday, this time accompanied by one of my longest term friends (seen at Lyme Park) – we met in the first lesson of History A-Level!