In need of hope

Hi everyone

I’m Emily. I live in South London, am in my 40s and have 4 year old twin boys, who are gorgeous & exhausting! Ironically (given my experience), I’ve spent my life working & volunteering tonimprove lives for others and currently work for the CQC (Care Quality Commission) on equality, human rights & health inequalities, though am currently off sick & don’t know what the future holds. 

I’m new here and thought it was time to connect with you all through this community

I was diagnosed with stage 4 colorectal liver metastasis (bowel spread to liver) last November. It’s all been pretty brutal, with more & more bad news as I’ve gone on my rollercoaster ride.

I was iron anaemic for 2 years and seeing my GP but they only did a FIT test 2 years later, when all my other symptoms - terrible cough, debilitating fatigue, drenching night sweats etc - all came to the fore & I asked “but WHY am I iron anaemic” No one had bothered to check. Covid got in the way but no excuses after I was STILL iron anaemic a year later.

I admitted to A&E 8 months before my 12 hour wait, in massive pain, which led them to find a mango sized “mass” on my liver. I was in a lot of pain & giving up Mother’s Day with my twin boys - 4 years old - as I had severe abdominal pains. He dismissed as “probably muscular” & shouted after me “oh, and you’re iron anaemic, see your GP”. I shouted back I had been. I now know there’s strong evidence of a link with colorectal cancer.

I started on FolFox chemotherapy just before Christmas, managing 3 rounds before I was blue lighted to A&E for an emergency surgery , interrupting in late Jan/Feb. During the initial treatment, my liver mass halved, but it seems inconclusive whether there was a differential effect elsewhere. During the 2 months hiatus, due to the op & long recovery, the cancer progressed. I’m back on FolFox but on a lower dose, as I’ve had quite bad side effects &, thanks to a virus from my little germ magnets, had to spend a day in acute oncology & miss last weeks’ treatment Back on it now & praying it’s a good round!

Very poor & confusing communication across 2 hospital trusts, & a terribly handled car crash diagnosis where I worked out I had not just cancer but secondaries in a room on my own. I staggered into the corridor, asking for a cup of tea, through tears, as I was very upset. The nurse said “no”!

Despite the chemo working & no progression, the reverse, when I’ve been on this, it’s been very hard to work out what’s actually happening. Finally a 2nd opinion & lots of conflicting, confusing pieces of the picture later, here’s what I now know:

* In December last year, my consultant told me “stage 4 is a spectrum - you’re at the right end of it & we’re putting you on a curative pathway.” I was told I would have 3 months chemo, a liver op, a bowel op & then more chemo to clear.

* This week, he finally apologised for *not* having looked at the PET CT scan - taken at another trust 2 weeks before we first met & he said was critical to see before starting my treatment. That didn’t happen. He’s now confirmed I’m on a *non curative pathway* ie presumably palliative.

* The reason for this seems to be that I have enlarged nodes above and below the diaphragm, including the media sternum and close to my aorta. This means they won’t now operate on the liver and my prognosis is worsened - not because there’s been regression but because they never read the scans properly across the trusts to see this earlier. It was only when they took a new baseline and looked back, they could see these had grown, so suspect cancer.

* I also now know I have a BRAF positive mutation. The good news is they say this seems to respond well to BRAF positive, with potential as a 2nd line of treatment (others probably know the names!) or next step if I continue to have bad side effects from chemo - currently on lower dose after weeks’ break.

* Next steps are to finish 12 cycles of FolFox - on day 2/3 of #8/12. Then we scan again. Hanging on to the fact that it has been working, although progression during hiatus from treatment due to emergency bowel op.

* I’m also having an MRI on my liver next week, as they’re concerned about some dilation linked to gall bladder. Could be stones, please no more cancer!

So that’s me & my journey so far. If you have any stories of hope you can offer, these would be good to hear right now. Feeling very low with it all I’m sure another bank holiday & half term will take my mind off it! Let’s hope the side effects are tolerable over this time