[CANCER] Another Update and Some Smaller Charities for those #BusyLivingWithMets

X Ray of Bex Lewis taken in New Zealand, April 2020
X Ray of Bex Lewis taken in New Zealand, April 2020

So, it’s been over a week since I got my new diagnosis (I still don’t know how big/bad it is), and by now I should have had a CT guided biopsy, and a CT scan with contrast … COVID is playing havoc with appointments, so it’s going to quite a bit longer before I know exactly what’s going on.

  • I now have a COVID swab test on 14th July (don’t they look just lovely, not had one before)
  • I will have both the CT scans at the same time on 16th July – very early start (but not a starving op :-)), and I have to lie in a hospital bed for 4-5 hours afterwards before they’ll let me get home. The CT guided biopsy will be under local anaesthetic (no sedation), as I think my other one was, to my chest wall (sternum area). Apparently it’s an ‘aerosol generating procedure‘, so with COVID this has made things MUCH more complicated, and I’ll be operated on by a team in a full hazmat outfit, extra cleaning, and all sorts… unlike last time when it was nurses/surgeon in their normal dress!
  • So clearly I am not getting my results back on 15th July, and it’s thought that 22nd July will be too early, so looks like results on 29th July (which was supposed to be my occupational health meeting, so I guess that’s moving too). At present I’m only signed off til 17th July – thankful that I’ve been in my job long enough to get up to 6 months paid sick leave if necessary… so that’s likely to extend. *And this ongoing worry is exhausting.
  • I won’t be going into the hospital for treatment on 20th, as he said Herceptin and Perjeta are clearly not working, so once we have the results from these CT scans, Laurel Suite at Stepping Hill will fit me back in to start the new treatment… if the tumour is HER2+ then probably kadcyla (every 3 weeks).

Pain Management

We’ve spent most of this week trying to get my pain under control – apparently it’s ‘complex pain’ (of course it is), first we tried the morphine/ibuprofen/paracetamol route, but it didn’t seem to do a lot … so we’re now onto pregabalin (originally a drug for epilepsy) which should help manage the nerve endings that are firing off all over my scar site. Making me a bit droopy and slow, but it seems to be making a difference (even if it’s not all gone). I can’t believe how fast the week has gone – lots of sleep (sometimes attempted sleep), lots of messages, parcels, gifts from people to help buy a new bed/laptop/mortgage – and just help in some way :-). It feels very unBritish to accept it, but I am trying to just say THANK YOU very much – everything means such a lot! I have been told to check out where I am financially in case of medical retirement – so I’m trying to do that, but it’s doesn’t seem straightforward, but hoping still have time (years) to sort!

Someone asked if I still have secondaries, or if it’s now ‘tertiary’ – it’s still secondaries – as soon as the cells leave the site of origin and start to spread around the body, they can form secondary sites of tumours – and that is what we are now dealing with… and hopefully will be for some time yet, although I have also been watching friends decide that it’s the right time to stop treatment in balancing length versus quality of life.

Cancer, COVID and Death

If you haven’t seen Panorama this week – worth a watch – they’ve chosen to build it around Kelly’s story (more on #YouMeBigC).. and two people from within the advocacy group have died recently, watched the funeral of Elaine this morning on Obitus, and the walk-out tune was:

I also heard today another good friend has gone, and waiting to hear when Fi has died – she did a lovely goodbye video – it’s the down side of making friends with (so many) people on social media who are in similar situation (which otherwise has so many upsides)…. and I wish more people would read ‘With the End in Mind‘ to make death not just something we have to think about when we’re dealing with difficult/imminent realities… and COVID19 has encouraged some thought into this:

‘In the Netherlands, it is fairly unusual for a person not to have an end-of-life plan registered with their doctor. In the UK, on the other hand, only 4% of us do.’

Support Organisations

Anyway, if you’re looking for charities that make a difference to those of us with secondaries:

  • METUP-UK is a small advocacy organisation fighting for better data, better drug access policies, more research into secondary treatments, more consideration of secondary cancers (within all the pink), improvements in quality of life, and education for those who are at risk. *Related T-Shirt
  • Jo also set up ABCD – and provides excellent diagrams for ‘red flags’ for identifying secondaries, as well as other information.
  • Stage 4 Deserves More offers support packs for women diagnosed with secondary breast cancer in the UK
  • Make 2nds Count raising awareness, funding research and supporting families
  • Secondary1st – seeking a cure for secondary breast cancer (it will affect around 30% of those with primary cancers, and is incurable)

A couple of smaller charities that have a wider remit:

  • Climbing Out (I had a place on this for this week :-() – about rebuilding confidence through 5 day outdoor courses with lifelong chronic illness.
  • ABCD Exercise Retreat (I did this a couple of years ago, and my group of friends from that is powerfully supportive). *Can fund here.

And here are the charities that have helped throughout:

I’ll probably think of others, but I’m tired now – it’s been a long day – and I’ve not even been working (and I’ve not even got through all my FB messages)!