Tag: Charity & Social Action

Categories
Cancer

[CANCER] Talking to the Oncologist about Treatment Plans on #WorldCancerDay #BusyLivingWithMets

So, today has been a funny day… it’s #WorldCancerDay, so social media is full of extra content encouraging us all to be vigilant in looking for symptoms of any kind of cancer, and to keep focusing on funding to be able to provide more treatments. My (new) cancer if I’d had it 10-12 years ago would have been ‘I’m sorry, there’s not much we can do longterm’, whereas now there are a range of very good treatment options… so I carry on seeking to live with metastatic cancer.

Swimathon

My team at Manchester Met Uni are taking part in a Swimathon for Cancer Research UK and Marie Curie Care. As I was going to an appointment with oncologist today, to discuss chemotherapy, I decided it was an appropriate day to stretch myself and do my share of the Swimathon early (as if I have chemotherapy I won’t be allowed to swim – infection risk). I’ve been getting up to 40 lengths reasonably frequently, so 60 lengths (1.5k) was my stretch target today … and I made it:


Oncologist

This afternoon it was back into the waiting room at Stepping Hill – thanks Suzanne for your company – and we’d settled in for a long wait, when we got called in only 30 minutes late!

 

View this post on Instagram

 

It’s #waitingroomfeet again today #worldcancerday – time to talk to the oncologist about chemotherapy etc …

A post shared by Bex Lewis (@drbexl) on

The appointment was relatively fast, because apparently I am ‘an unusual case’, with HER2 not in my original tumour (despite the extra DISH test), and now showing in the new tumour (which is definitely a metastatic tumour) – so there are lots of conversations and no 100% obvious route for treatment. They are now looking for more information from my original tumour, and my spinal biopsy cells – with them being subjected to the FISH test at the Christie.

So, today, there’s no changes in the systemic treatment – I will continue with the Zoladex and Exemastane, and tomorrow I will sign up for the CORE trial, and then find out if I’ve been put in the 50% for stereotactic radiotherapy (with a wait), or 50% with standard radiotherapy (which means we get going). Essentially they want to get rid of as much of the tumour on my spine as possible (they’re not expecting to eradicate it, but to control it), and that treatment is in process of happening, before anything else happens.

Once that has completed, we start looking at more systemic treatment, such as chemotherapy – which they’re still keen not to give me as I’m looking pretty well, so there may be an option to just give me Herceptin. There will be a lot of discussion, and I am expected to be an active participant in this – now I’ve been told about the gold standard drugs that come with chemotherapy, obviously I want them, even if I don’t want the chemotherapy – but happy that lots of things are being discussed – and they’ve clearly got my health as a whole in mind – and want to do best for overall treatment and wellbeing.

There is no change in prognosis, but as the hormonal treatments have already shrunk the tumour, that take the pressure off other treatment… so I see the oncologist again in 3 weeks. I was hoping that by end of this week I’d know what my plan was – instead – sit with the uncertainty and lack of control a little longer, knowing at the heart of this is a desire to not over-treat!

Photo by Martha Dominguez de Gouveia on Unsplash

Categories
Event

[CHARITY/CANCER] Partaking in the #Swimathon with @mmu_business staff

As I’ve written on the page, which is for all of our friends to sponsor us:

Cancer has truly got in the way of my life since August 2017, when I was diagnosed with aggressive breast cancer. After going through surgery, chemotherapy, radiotherapy, and hormone therapy (documented on https://drbexl.co.uk/category/cancer/), I hoped that the ‘cancer treadmill’ was flattening out.

My colleagues and I, lecturers in digital marketing at Manchester Metropolitan University, therefore signed up to participate in this Swimathon. 8 of us, of differing swimming abilities, will be  swimming independently and then combining our swim distances together, to ensure that we’ve swum at least 10km between us.  This page offers space to donate on behalf of any of the team-members listed above.

Unfortunately, my cancer has metastasised into my spine (thankfully small), so I’m about to enter more treatment. I may have to do my swimming early, or my colleagues may have to cover my distance… an example of the flexibility and backing up that my team have given me throughout this process.

Join us for Swimathon 2019 – the World’s largest annual fundraising swim.

Support us here.

Categories
Cancer

[CANCER] Urban Axe Throwing with @WhistlePunksUK, courtesy of @ElliesFriends

When cancer strikes, it’s pretty rubbish, and your life can become absorbed by medical appointments, a fear of the future – often combined with a desire to cram in as many experiences as possible as life feels more precious and there ‘to be lived’. Many charities help with all kinds of aspects of cancer, but, along with the Willow Foundation (for 40 & under), and The Honey Rose Foundation, Ellie’s Friends is one that I’ve been privileged to win a couple of things from – including some hats from Annabandana, most of which found their way back to Maggie’s in Manchester (Maggie’s and Ellie’s Friends are now part of the same charity). Here’s why they exist:

Anyway, their prizes are all over the country, so pick carefully – but one that intrigued me in Manchester, was Urban Axe Throwing – and I was duly informed that I was the first winner of this prize, so they wanted to know if it turned out to be a good prize! I received 2 sets of tickets for 2 people … and I still have one set left (ticket holder already assigned, sorry if you want to go, but you could always join us once we book!!!).

After popping into a Chinese buffet, we headed to the venue (in with the Odeon cinema on Deansgate) – via a handful of #BeeInTheCity:

Getting that axe arm ready! Thanks @elliesfriends #beeinthecity

A post shared by Bex Lewis (@drbexl) on

We had to ‘sign our lives away’ on an iPad disclaimer form, given the opportunity to buy some (non-alcoholic) drinks or snacks before starting, could play some games or darts, or just generally look around! A note that flat shoes are recommended, and open-toed shoes are not permitted (although a really fetching pair of Crocs was provided for the one person who had these). You’ll be joining in with whoever else has signed up – in our case 13 people all from the same company – and the 2 of us!

The team was good, getting the atmosphere going. We had 3 attempts at single throwing – much of which I looked like this as my axe bounced back off the board towards me:

The tips were good – e.g. ‘good stance’, ‘try gripping this way’, ‘try counting before letting go’, and how to get around surgery arm, etc. I still hadn’t embedded the axe into anywhere but the edge of the board by the time we went into ‘competition’ mode – in which we played in pairs (we had 2 lanes open), and the higher scores would play off against each other until there was a full on winner. We then had the opportunity to try throwing 2 axes, our instructors showed a couple of ‘trick throws’, then took photos and wished us a good evening. I think 2 people from the evening got their name on the ‘wall of fame’ (for those with scores over 50) – that most definitely didn’t include me!

So, overall, fun experience – I always like trying new things. I’m looking forward to going back and having another go (and if you really like it, you can join a league!!). And there’s a 10% code available for others too: iamawhistlepunk

Categories
Digital Life(style)

I bought a @Fairphone #wearefairphone

fairphone

I knew I was about due the end of my contract with Three, and I’ve had days where I’ve loved my Samsung S3, and days when I haven’t, but I’m guessing no phone is perfect. Was getting excited about the idea of the Samsung S5 as apparently they’d improved loads of things on it, particularly the battery life! However, last year I became vaguely aware of the @Fairphone, and as I often make mention of how to behave ethically/morally online, it’s made me think a lot more about what I own in the electronics sphere (to be honest, don’t own a great deal of other “stuff” of any value), so I started to think about it. Then at #TDC14 the other week, there was a speaker talking about the wars in the Congo – and that most of them are down to fighting over the minerals in mobile phones – so people are dying for our technology.

I need a really good phone as so much of my job is reliant upon digital, so I was nervous about going to such a small brand, but a few more tech-savvy friends (I’m more of the ‘Can I do this with it? Great! Can you do it?’ school when it comes to digital – although there’s an increasing number of tools that are easy to use, and those I work with too) about the spec, and it was said to be at least as good as the S3, probably better – and it’s dual-SIM – maybe I can get an extra SIM card and then have a mobile number to give out for work – I like to impose boundaries on at least some of my tech. Walking into the Three store – one of their staff hadn’t heard of it – looked it up – and said it was a good spec – so now moved to a SIM only deal. Financially, this will work out about £200 cheaper overall once I’ve used the Fairphone for a couple of years … and it appears my “old” phone is still worth about £100 on ebay! I have asked around on Twitter/Facebook quite a lot recently – and people who have them all seem really pleased with them … so an even bigger number of us appear to be diving in this year …  There are 35,000 phones being manufactured ready for July 2014 – right now 13,034 have been sold. 

Ethical Superstore has written a piece on this, ending:

Buying electronics should be no different to buying coffee or tea. If we want to see a fairer world, we need to support the companies that are working to make that happen. Through our purchasing decisions we provide the demand that allows these companies to grow. As consumers we can vote with our wallets…we just need to make sure we vote for the change we want to see.

and Rankabrand defines it as the most environmentally sustainable phone… and most of its sales seems to be on word-of-mouth. Am committed now, so…

Categories
Life(style) Media & Press Media - Text

Cartooned up for #TFBloggers

Tearfund-bloggers-cartoon-square2DW

And how cool is it to have someone create me in cartoon form…

Tearfund-bex-lewis-text

Though there are comments re similarity to a certain TV character:

Free Vector Scooby Doo VELMA0021291

And here’s the official press release – available to chat if anyone would like to.