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!
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!!