Categories
Cancer

[CANCER] #Waiting and #Finance fears are such a feature of #BreastCancer

When I was diagnosed with breast cancer on 31st August, I was both shocked and pleased at how fast things moved. We had to wait an extra week for an extra test on the biopsy to determine that the tumour wasn’t HER-Positive, and then the next thing I know I’m in surgery!

Waiting

Those early days of waiting for biopsy results, extra tests, recovery from surgery, and then further scans to test that the cancer hadn’t spread, which thankfully it hadn’t (despite my scanxiety) – which I guess means I’m Stage 3A according to this Macmillan chart. I was told at the first confirmation that it was Grade 3 (most aggressive).

Meantime, I’ve spent the weekend as rather an emotional mess because the flexibility required for this treatment is wearing me down. I think I’m normally a fairly optimistic and positive person, but we can all get worn down. Thinking of friends who have died through this treatment, recent news stories about high recurrence rates, trying to work out if ‘this new thing that’s happening in my body’ is normal or not – all is quite wearing to put it mildly! *Returns to Tanya Marlow’s book!

Part of the stress of this weekend was that I was to meet the oncologist again this afternoon to find out the results from the Optima trial, as to whether I will need 18 weeks of chemotherapy treatment + radiotherapy + 10+ years of hormones, or just the radiotherapy and hormones. The side effects of chemotherapy look horrific, but obviously I’ll do if if that’s what’s required, but everyone hopes for a chance to not need it … and of course the trial means contributing to more research into effective treatments! Anyway … I had a phone call this morning to say that the results haven’t come back, so things are being chased in the hope that next Monday instead…

Alongside that, there’s talking to work, who are essentially giving me a form of study leave (rather than sick leave) as I can work at home on research – which is a great distraction – assuming one can concentrate – making progress on that journal article, managed to do a fair bit of media work, and even made it PremDac17!

Financial Fears

That brings to surface one of the other big fears that gets amplified by waiting around and wondering what’s happening… the financial fears! MMU is my first full-time permanent role (started 2015), I’d just moved into my house 18 months before the diagnosis, and finally had been feeling that maybe I could throw off some of those student living habits – although my boiler needing to be replaced just as the diagnosis came in didn’t help. Macmillan reckons the average extra cost of cancer is around £570 per month for patients, and there are extra bills involved in being at home a lot more, extra fuel to get to many many appointments (and if people hadn’t driven me, much more in taxis), various extras such as Manuka Honey (10+) which seem worthwhile! I didn’t have critical illness cover, because with other pre-existing conditions, it was coming in at something like £220pm – and of course we all don’t expect to need it!

Thankfully we have an amazing NHS in this country (long may it last), and all my treatment has been covered, staff are fantastic, my prescriptions (not dental) are covered for at least 5 years, I get a free prosthetic boob (which randomly lined up look a bit like Ollivander’s wand shop, or those old fashioned shoe shops with the boxes lined up by size), a free bra (and it’s not too granny!), can order a wig if required, etc. for £70…. obviously I haven’t totalled all that up! I’ll be on the lookout for appropriate counselling at some point too, though I suspect that’s not covered!

I was initially told that I would have to take 4-6 months off work – which would not all be fully covered by sick pay, and also lost (or at least postponed) gigs with my consultancy Digital Fingerprint, suspended being an external examiner for University of Stafford for this academic year, and who knows what this’ll do to career progression plans. These are all things one doesn’t plan for … we’re just getting on with our lives! MMU, however, have been pretty good so far – my team went straight into action, covering my teaching, sending me supportive messages + Birchboxes, saying ‘we want to see you back next September fit and well, and ready to carry on teaching!’. Meantime, I’m getting on with research-based work at home, which contributes to the REF – I know people say cancer’s supposed to give you an epiphany into what is important, but no one goes into academia for the £ – I want my work to make a difference – even more so now to be honest! There’s going to be ongoing waiting whilst in conversations with Occupational Health, managers, etc. once on a full return to work …. and of course there’s always a fear in the back the head about a potential recurrence – do I live a little more freely in spending a little more to ‘make the most of life’ (not that everything costs), or do I go back to ‘being super careful’ in case I need the ££ … such thoughts are on a tiring whirl!

Other sources of support have been Maggies employment expert, Macmillan has a load of information on work and cancer, whilst my mortgage company work with Macmillan to provide specialist support to try and take away the financial fears – and will give me a holiday repayment if required, although thankfully I have had a few gifts (including not needing to buy as much food), which means I now have 6 months of payments sat in overpayments. #thankful

Friends and Family

Throughout all this I have been deeply grateful to friends and family, and have sought to keep people updated via Facebook, Twitter and blogging (well, I am a social media specialist!), and whatever platform works – minimising as much repetition as possible! Some content is more public than others, and I hope I’ve got that balance right in trying to keep friends/family informed, help for others going through this, and yes, to a certain extent, quite therapeutic for me! I have no idea how anybody manages to undergo this and keep it a secret!

I know that life continues for others, but there’s a steady group of people checking in, cheering me on, encouraging me – online and offline, and hearing of so many prayers around the world – and I am enjoying my ‘walls of love’ every time life seems pretty dark:

We started here … and various flowers/plants have come and gone there too… 

Then we took over the next wall… 

And then we (that’s the royal we, doncha know) took over this wall for my ‘Novembervent’ (after Octobervent)

Throughout all this I want to keep #Countingmyblessings, and the Facebook groups for those with breast cancer are deeply encouraging – yes there’s times when it can be a challenge as you realise people are on there at their most difficult times (and members do die) – so super grateful to those who come back later to talk about how their lives are post-cancer, and those who could be out the other side and remain on as group administrators!

It’s a weird time of waiting – don’t want to plan too much as need to remain flexible, don’t want to spend loads, but important to have things to look forward to – as someone who thrills at ‘new things’, adventures and achievements … aside from learning to rest… hmmm! I’ve got Homage2Fromage to look forward to next Monday evening, Younger Women Together the weekend after – now what can I do that’s nice this week too?

Meantime, it’s time to pop to the post office, get some fresh air/steps in, and then tackle another section of writing!

Categories
Cancer

[CANCER] Celebrating Clear Scans + @macmillancancer Digital Nurse #BreastCancer

Tomorrow is 6-weeks post-surgery, time that has gone both fast and slow… Last time I wrote I’d had the pathology returned, and had had scans as to whether the cancer had spread… and had succumbed to a wound infection. Apparently having bone and CT scans are pretty normal, but I hadn’t expected them, so that sounded like pretty bad news! So it was with a lot of nervousness that I went in, to be told that all the scans were clear… but there was no clear picture of the liver, so that required another scan. The constant waiting is very wearing, but unavoidable!

I’m pleased that the antibiotics for the wound infection finished last Friday, as I felt like I was on the deck of a ship … I’ve also had a bit of a rest of body MoT (other than the scans), with dental all clear/filling repaired (as if I have to undergo chemo I can’t have dental work done), and eye health also signed off (new glasses provided through work scheme on order as prescription has changed)…

Scans All Clear

Yesterday I went into the hospital for an ultrasound on the liver, expecting to have to wait til next week for the result – and came out having been told it was clear – with my muffin (which had been rescued from the freezer, as I’d not been able to eat for 6 hours beforehand) serving as a celebratory item:

I’m really happy, but to be honest, also a bit dazed and not quite sure how to celebrate – the tube of Pringles didn’t quite cut it, though the outpouring of celebration on social media has been something pretty special (and Kate’s tweet & it’s responses made me smile)! There is also the fact that although my body is now officially #cancerfree (as there were clear margins from the mastectomy), there is still treatment to come … exactly what is subject to more waiting.

Joining the Optima Trial

Throughout the last couple of months, chemotherapy was the one thing that was signposted as a given, with radiotherapy not sure, and hormone therapy for definite. I have signed up to the Optima Trial (into its third phase, so already pretty solid) – after taking a week to think this over:

Doctors decide who should have chemotherapy by looking at the size of the cancer and checking to see if it has spread to lymph nodes. But some people might not benefit from having chemotherapy. It is possible that they will do as well with just hormone therapy. So doctors are looking for better ways to decide who should and shouldn’t have chemotherapy.

With the trial, 50% will be randomly assigned chemotherapy. The other 50% will have their tumour sent off for testing, on the basis of which chemotherapy may be recommended, or may not be! If I hadn’t signed up for the trial I would have had 18 weeks of chemotherapy, 3 weeks of radiotherapy and hormone therapy for 10 years by default. The trial determines if chemotherapy is required. All treatments have hideous sounding side effects, but chemotherapy the worst … so if there’s a chance of it not being of value, that’s worth the extra 2-4 weeks wait! On reading one of my oncologist’s papers (well, OK, trying to read it) re Oncotype testing – a similar test from the US, it seemed clear that the value was both patient wellbeing (chemo is tough!), and also NHS funding (test is around £2,000, chemo is around £50,000).

Whilst waiting, if I can manage to avoid any further infections, etc., then I’ll keep popping back to see the wonderful nurses in the Bobby Moore Unit, meet the oncologist again on 13th November – and this weekend hopefully attend Premier Digital Conference Conference/Awards (for which I’m a judge) … and then have some time to continue writing!

Research

I’m really excited to see that Macmillan has hired a ‘digital nurse’. As DigitalHealth.net put it:

Macmillan Cancer Support’s digital nurse specialist, Ellen McPake, is solely dedicated to answering questions online to help those affected by cancer online, via social media platforms and the charity’s online community… A growing demand for online information about cancer diagnosis and treatment has prompted the creation of the role. Macmillan is also concerned patients lack the information they need and are instead turning to unverified sites which leaves them frightened and at risk of bogus cures.

I’ve encouraged churches for years to have ‘digital pastors’, or at least take the online as seriously as offline. One of the first things my medical team expressed concern about was that as a ‘digital specialist’ I would fall for all the dodgy information online, but note page 163 of my book, Raising Children in a Digital Age, where I’m talking about pro-mia sites:

Dr Rachel O’Connell, an internet safety expert in this area, notes that many organizations have been reluctant to set up online health sites, so other sites have grown to fill the gap. There is a significant danger that, because many sites are unmoderated, information isn’t monitored, so incorrect answers go unchallenged.

Digital literacy is one of my core interests, and my history degree/PhD emphasises context/content and interrogating sources, I think I’m pretty well equipped (although I guess desperation can cause strange behaviours). It is something I’m interested in looking from a research perspective though – what kind of information do people trust online, and more particularly, the use of online support groups (I’m in 3 very active breast cancer groups, plus a women in academia group, an anti-diet group + other groups, many of which are my first stop for information). There’s plenty there to think about. Tonight, however, sleep is key… and tomorrow I’m getting my nails done!!