Categories
Cancer

It’s October: #BreastCancerAwarenessMonth #IAmThe31

So, today is the first day of October, and your timeline may have been full of (pink) breast cancer awareness campaigns … also noticed that it’s ADHD awareness month, Black History Month, Downs Syndrome Awareness month – so hopefully we’ll learn about a range of different things this month…

Facebook ‘Secret’ Campaigns

You know I’m not a fan of these right? How does posting some kind of random emoji, your underwear colour, or an untrue statement (that caught you out) help us to be aware of what we should be doing to check our breasts (women and men) on a regular basis. As I said yesterday, but worth a reminder – I find ‘the lemons’ a useful illustration for people who don’t have cancer to look out for – and if you notice any of these – get to the GP as soon as you can (especially with the delays that many have faced with COVID):

Breasts with cancer depicted as lemons

For those who have already had primary breast cancer (and, for some, who will be ‘de novo’, notify GP if these are concerning even if you don’t have cancer) – around 1 in 3 will get secondary cancer (like me), with an average lifespan of 2-3+ years (only 20%, especially those with triple negative, are expected to make 5 years) … so spotting earlier is key:

 

METUP-UK.ORG

Although I am trying to slow my life down, of course I want to get involved in things to make a difference to my life (and those in similar situations), so earlier this year I joined METUpUK, who are “are a patient advocacy group aiming to turn metastatic breast cancer (MBC) into a chronic illness and support MBC patients to gain access to the best medicines to prolong and improve their quality of life. We work towards a day when MBC can be cured.”

Although October is Breast Cancer Awareness Month #BCAM, only 13th October is a day for a specific focus on secondary cancer, although it’s only this that kills (the data around secondary cancer patients is still very poor, so it’s hard to establish exact figures, life span, etc.)… and METUP UK has some material coming for that day too!

We demand change (statistics)

We had a couple of meetings recently – one to look at the overall pattern of where METUP-UK is going, especially with early member Beth’s death this summer, and founder Jo dealing with brain mets this year, and the other to look at how some of us can take responsibility for the various social media aspects – and ensure some consistency. As most of us are (young) secondary cancer patients – already trying to balance cancer, work, family, and rest of life – we’re trying to find a couple of people to support each aspect (and we’re open to family/friends/primary patients – and also keen to advocate on behalf of all metastatic patients, not just cancer).

So … I’m starting to look into the options for what we can do with blogs on the website, how we can share more stories, link to news, and other options … if you’ve an idea for something to contribute – let me know (or even what you’d like to know/see, that I can maybe get someone to answer…

31 or 3:1

So, knowing that 31 women in the UK die every day from breast cancer, I am taking inspiration from a fellow secondary friend … the month out of hospital I was managing 1-2km per day, last month around 2.2km per day – so today I ended up walking 3.1km – and wondering if I can manage that distance (as an average) every day for this month. If you fancy supporting Metup for this – e.g. 31p per day would be £9.61, or if you were feeling particularly flush, £1 for each woman that will die this month = £31!

Stage IV Deserves More

Another support I’m keen on for secondary patients, is this initiative set up by Gemma (who has had to deal with spinal and brain mets), which provides ‘goody bags’ for secondary patients, seeks funding for more research, and also has an associated Facebook group.

YBCN

The Younger Breast Cancer Network was the first Facebook group I truly joined, and particularly connected with those that were going through treatment at the same time, or met at events. Aside from the public page, there are a number of secret groups run by volunteers. I have resisted becoming an official volunteer, but I am an ‘admin’s mate’, so keep an eye out for those who haven’t been responded to (no post goes unanswered), and look out for activities to add some joy to the group (e.g. predictive sentence games).

BRIC

I joined the admin team of the ‘Building Resilience in (Breast) Cancer’ just before my latest diagnosis, but were I being fully active, I would be welcoming new members, setting up topic prompts, engaging in the Sunday evening discussions (and taking my turn at writing the summaries) and then sharing those.

Social Media

I’m also engaged in some other groups on a smaller aspect, but otherwise, it’s about keeping an eye out for Instagram and Twitter for hashtags, playing with a Discord group, etc. and trying to learn more about what is available online and offline for various types of cancer. Unfortunately just heard yesterday that our NIHR bid on social media and cancer has not gone to the second stage – we await more detailed feedback to see how/if we can take that bid further forward – I think it’s so important that we know so much more about why/what/how people use (or don’t use) social media alongside the rest of their treatment – and what helps and what hinders (so much good advice, but so many people dying – 50 young women from YBCN alone this year…).

Scanxiety

October is going to be my month of Scanxiety – as I have my CT-with-contrast scan on 14th October, might get the results by 28th October – although there are lots of delays, so not to be surprised if I don’t hear til early November. In some ways, this is a relief, as I thought I would have no idea if my treatment is working or not til December, so hoping for best-case scenario – that the treatment is working (and that we’re managing the side-effects) – then I can start to work out how to work back towards some kind of normal life, with (I think) another set of scans at the end of the treatment plan (December?) – if it’s working, we continue (it’s heavy going – 4+ hours in an oncology suite every week + side effects) – if not, then we have to try something else…

Categories
Cancer Media & Press Media - Audio

[CANCER/MEDIA] Talking with @StephenNolan, @SaraBainbridge, @NicMurray & @larba74 about Cancer and COVID.

Last night I spoke to Stephen Nolan, along with Sara Bainbridge from Macmillan, and fellow cancer patients Lara Montgomery and Nic Murray (we largely spoke in that order, although there’s a bit of interjection), about what it has been like to undergo cancer treatment/progression whilst the pandemic continues, how it has affected diagnostics and treatment, and ultimately, the potential impact upon our prognosis. The interview starts at 31:20, through til 1:00:42 – and although we did it as a pre-record about 45 minutes before the show, it’s largely used ‘as is’.

I’d been contacted Thursday about the potential for this, and was rung around 90 minutes before we recorded by another producer to talk about how I was doing, if I was feeling fit for it, a recognition that it’s a personal topic and might be hard, so the pre-record gives the opportunity to stop and re-set as needed. Really nice to get that reassurance too…

I always do a bit of pre-thinking … things I thought about saying (and as you’ll hear, the questions don’t necessarily go that way – hence why I like to have options):

  • Being in NZ for COVID/getting home (and the delays that caused)
  • Delays in scans because stuck overseas/non-urgent, pressures on hospitals to take ‘safe’ procedures’ so less people getting stuff
  • Not being able to take anyone into appts and being given crap news on your own ..
  • The measures hospitals are taking (PPE/limited visitors/ongoing testing) to keep us safe … lots of plastic sheeting everywhere *and yes, I could have mentioned the mask for hospitalisation … !
  • The care that staff still give – and the Christie saying not expecting any changes in procedure til Spring earliest.. though get the majority of my treatment at Christie outpost at Stepping Hill Hospital.
  • Cold-capped before – not even an option for many now, and psychologically not for me now – so might lose my hair this time
  • The suspension of lots of cancer research trials meaning likely to be less options + loss of funding to charities similar impact.
  • Within breast cancer around 30% will end up with secondaries – but that only around 12% of research funding goes into targeted treatments (but then other cancers may have even less…) …
  • I wanted to get across METUP-UK aims and objectives in some form: METUP-UK – one of patient advocacy groups fighting for better policies around treatment (e.g. NICE says can’t have x treatment if have had y treatment, although may have been proven to work overseas, and could buy someone another 2+ years), better data collection … along with better knowledge of metastatic cancer (people want to skip out of primary treatment believing it’s all done), and support for secondaries patients who can feel written off…… and this was pre-COVID! Do know people whose treatment was suspended and got progression … *could say same with me, but at least I got to go to NZ!
  • Support groups such as Stage 4 Deserves More, Make 2nds Count, Secondary1st, and YBCN for inoperable… and hopes for an NIHR bid looking at social media/cancer so people can access better info & interact better…; BRiC Centre – Building Resilience in Breast Cancer Centre – undertaken research demonstrating the mental health impact on women – of delays, lack of scans, etc
  • Saw someone else who was advertised as ‘losing their battle’ today – not a fan! It’s ALWAYS in the papers … as #YouMeBigC – another Radio 5 programme did a whole episode on … the metaphors say a lot.. and put a lot of pressure on the individual to be positive, etc..
  • The way that the Nolan sisters cancer was reported (they have metastatic, incurable cancer, not ‘spine cancer’ or whatever, and they may get 30+ years, or, the average (recognising averages are a mess) is 2-3 years – with ongoing treatment.
  • The poor data collection – so primaries/secondaries not necessarily counted separately.
  • The impact of shielding – SD walks for mental health, missing my wild swimming … but people rallying around to deliver things and the joy of zoom etc ..
  • Worries that Covid is going to stop seeing people/travel… what happens if I don’t get well – plans for back yard but not same ..
  • Missing my cleaner = when energy levels low .. though she is about to restart, with lots of PPE
  • Ironically easier to get through to the GP it feels at present with telemedicine, inc a video call – though keen for balance with f2f!
  • The distance from family – my mum travelling 5+ hours to come and help out ..
  • The challenge of relying on public transport/ambulance service at present … with compromised immune systems (and all those people wearing masks on their chins)
  • People not being able to get certain brands or quantities of drugs .. though that may be more Brexit
  • Confusion over shielding and being able to work … vulnerability … no clear message
  • Some difficulties remain the same … others are unique to Covid!

If you’re looking for my latest cancer update, it’s here.

Categories
Cancer

[CANCER] It’s Metastatic Cancer Awareness Day

It’s Metastatic Breast Cancer awareness today. This is a tricky topic, as most people don’t know what it is Many primary patients don’t want to hear about it – but no oncologist/surgeon can promise you are cured – and as with the standard awareness campaigns – the sooner any new tumour is found, the better – so you need to stay aware too. This time last year I didn’t know it was going to be something I had to deal with … and I’m doing my best to be #BusyLivingWithMets (although it involves a lot of sitting/sleeping and #waitingroomfeet). I have just joined up with MetUpUK, which has just launched a new website today (although it’s been active online/offline for quite some time), driven by the wonderful Jo Taylor (@abcdiagnosis) who runs exercise retreats for cancer patients, and has been working to get the NHS and major cancer charities to adopt her ‘red flag infographics‘ for years (they are already widely circulated in the cancer community):

I recognise quite a few other names of people on there who are in Mission Change … patient driven change within the health service.

I’m dropping in a few useful bits of content from around the web to help people understand more:

There’s a useful video from Breast Cancer Now as to what Stage IV cancer is:

and one of the things we really could do with is a specialist support nurse:

Someone told me the percentage of Breast Cancer Now money that goes into secondary research (bearing in mind that this is what actually kills us – primary cancer is officially curable) – somewhere between 5-20% – I can’t remember. They do, however, provide support groups for us, and this year got together a group of secondary patients who came up with the #Unsurvivors campaign (I’m not particularly comfortable with the term, but please sign the petition anyway), and see the rationale for it:

Make Seconds Count is one of the few charities that focuses specifically upon research to find more treatments for those of us with secondaries:

YBCN is a very supportive online community (mostly Facebook) which has been sharing stories from those with secondaries all week in The October Project – and today’s is (‘mental gymnastics’ is a very apt phrase):

And I also check in with Secondary Breast Cancer Support Group (part of BCSS, I think) and the new Secondary Sisters.

Emma (maker of the F**k cancer necklace/pin badge) has been sharing some great content on Instagram – here’s one of hers:

 

View this post on Instagram

 

But what is a metastatic cancer? And would you believe it if I told you every woman in this photo had it?????????? ?????????? There are many names for this type of cancer – secondary / stage IV / metastatic / terminal (only if you’re trying to win an argument though!) They all mean the same thing……..????????? ????????? A secondary cancer is when a cancer spreads, metatasizes, from the original location to somewhere else in the body. Once it has spread it is no longer “curable” and, whilst it might become dormant in a person’s body (NEAD – No evidence of active disease) it will always be there and someone with MBC will be in treatment for it for the rest of their life!????????? ????????? In my case, my cancer went from my breast to my bones, But breast cancer tends to like spreading to the bones, the lungs, liver and the brain. ????????? ????????? If you’ve had a primary cancer and you are concerned about a spread in your cancer, please look up ABCDiagnosis and check out the infographics Jo has created. They’re truly one of the best resources you could have on your side!?.??????????????????? .???? . . . . . .??????????????? .??????????????????? #metastaticbreastcancerday #bcam #secondarysisters #secondarybreastcancer #metupuk #cancerthriver #metup #metastaticbreastcancer #breasties #walkingmiracles #dyingforacure #womenwithcancer #stageivneedsmore #researchnotribbons #thriver #truecancerbodies #cancersucks #cancerrightnow #fuckcancer #emmaVcancer #ybcn #thegramgang #BreastCancerAwareness #standup2cancer #su2c #breastcancerawarenessmonth

A post shared by ?? | ?? ???? (@ohgoshem) on


And Shine Cancer Support published something similar (by the way, I assume all queries come from a good place, but it’s great if people educate themselves as to the impact constant queries have on us):

and sometimes we just need reminding that nothing in the world can prepare us for living with a chronic/life limiting illness.

See what BRiC has to say about this:

And #NoBraDay was an interesting one on Twitter – it does have a good purpose – but obviously was being misused (but was trending pretty much all morning):