Meeting the surgeon

 Having had all of the diagnostic tests done, today we met the surgical team.

It was not at all what we expected, we've both left the appointment feeling rather rattled.

The team walked us through chemo and what to expect (we were shocked by this as Oncology had already explored this to us in great detail. The good, the bad and the ugly!) Oncology were very thorough, yet positive. From those conversations we felt prepared for chemo and fully aware of what may or may not happen. (I will touch on the chemo in another post) The surgeon however seemed to have her negative pants on. Phrases such as ''this chemo will hit you like a train'' 'it will 'floor you'' ''you will be in bed for days''. Non of which we expected or were prepared to hear. Those sorts of effects were something we were prepared for, however from our previous appointments and conversations with people undergoing this particular chemo, we'd learned that it's a really personalised journey. There are common threads through treatment and common side effects, but everyone is different.

In all honesty I was baffled why the surgeon was on the chemo topic and telling us what she believed it would be like. We were under the impression we were at the appointment to discuss the surgery.

Following the surgeon's comments on chemo, she began to explain the Ivor Lewis procedure, explaining in detail what would be done (we'll explore this in depth in another post). Once again we felt the surgeon had a negative outlook on the procedure. Maybe she's just not a positive person like you are? She told us that the surgery would take Tony at least 2 years to recover from, change his life from everything he knows. 

What?! This is not at all what oncology said it would be!

It was also explained that Tony would go for a Staging Laproscopy . The primary reason for this is so the surgical team can take a look inside and explore the tumor. They also need to check that the cancer hasn't metastasized (That basically means spread). With this particular cancer, if it's spread to anywhere else (lungs, liver, heart) the surgery is not an option and wouldn't be offered.

The way the surgeon explained this to us was ''your PET shows no spread, if that's correct we are happy to do chemo, surgery, chemo. If the PET is wrong you will only get paliative chemo''.

Following on from hearing that, both Tony and I had very little to say.

Shocked is porbably the best word. Every meeting we have had has been positive. Yes we're talking about scary stuff,  it's not fun, it's still cancer, but everything has been positive. Focused on curative.

We walked back to the car in silence. I was fighting back tears. Locked in my head with my thoughts.

Paliative. End of life. That's what that term means right?

I've  had the job of providing 'paliative care' twice. Neither ended with sunshine and rainbows.

The hospital is an hour away from home, we sat in silence driving home for the first 20 minutes or so, both completely numb. A Macmillan advert came on the radio and that was me off, the sobbing started. Floodgates well and truly open. 

No one in the medical profession had mentioned paliative care before. We'd always focused on a ''curative pathway''. We spoke more about the meeting on the drive back home and decided we'd talk to our specialist nurse on monday and go over what had been discussed. We hoped for clirification on what had been said, reassurance and to get the positive back into this.

Something said in the Facebook group i've mentioned previously is quite poignant here. ''Surgeons aren't peopley people''. Don't take offence if that affects you, or someone you know! It really did match our experience though!

We hadn't expected to hear that surgery may not be an option.  One of the hardest things we have learned on this journey is to try to take things as they come. You can be fully prepared for plan a, and then last minute, you end up on plan b.

Be ready for things to change, hope for the best, but be prepared for the worst.