(READ PREVIOUS BLOG FIRST – LIVER MAN’S VIEWS) http://iwasntexpectingthat.com/2019/10/26/liver-mans-views/
4 and a bit years ago I got told that surgery is not an option, it’s inoperable and all that’s available is palliative chemo, with a life expectancy of 2 to 3 years max. Well, being here to write this would sound like a massive feat and trust me it has been a long, exhausting and bumpy journey but we’re here.
Then finding someone who says actually let’s look at this different, you’re pretty strong, have coped well with chemo, let’s see if we can surgically remove the nasties in the liver. Two previous chemos had stopped working so what was there to lose? Well we found him. We actually found 2 liver surgeons that would operate but we were already part way through that journey with 1 of them and we liked him, we felt supported and more importantly felt confident. With the ringing in our ears of “yes let’s plan for surgery, it’s a go ahead” and the little parties in peoples heads that went on. Can you imagine what those 6 days were like between hearing it over the phone and waiting for the appointment for what we thought was to sort all the details.
Well, in 6 days your mind can do alot and especially mine that already runs at a 1000mph. Yes, feel scared about the surgery but hopeful for what the surgery may bring after recovery. I let little dreams creep in, discussed things I’d written off in my life, changed my viewpoint a bit from dieing in the near future, got excited about some time without chemo (let’s remember I’ve never had more than 5 weeks off).
Everybody walking around with a certain degree of confidence and excitement, ready to see what the plan was and the details of what would happen. So, when we get offered an appointment with the surgeon on Tuesday, we snatch it even though we are due to be in Romania as its half term. We cannot miss this appointment, so we sort out the flights, we will just go after…
Tuesday comes round bags packed and the voyage to London for the appointment and then on to Cluj Napoca in Romainia begins (who knows if/when I would be able to fly again). Relatively confident as we head off, until it dawns on me an hour before… This may all be too good to be true.
In we walk, he’s got one of those faces on him, those ones where you know something isn’t quite right and probably the next few words out of his mouth are going to include the word sorry.
There it is.. I’m really sorry after getting the go ahead from the MDT, further discussions were had with Dr Awesome and unfortunately you’re latest CT scan shows there has been some progression in your lungs, although not big there is a few more spots (we don’t know how many for definite). Unfortunately this means surgery is off the cards and we need to attack them with more chemo first to see if we can get them under control before doing surgery, as after surgery you will need to recover before any chemo can be administered. No fault of the liver man, he believes with chemo we can get them under control then re look at surgery in December. Liver man does not know however, that we are therefore pinning all hope on a drug that I’ve already had, which had already stopped working and was only a shot in the dark 6 weeks ago. Yes, let’s pin loads of hope on that to get these out of control lung mets back in line for surgery to be an option???!!
There it was right there, in front of my eyes, that option being taken away again. This was harder to take than the first time because I’d built hope and felt we’d reached the point to have a shot.
I leave there feeling shattered, angry that we’d let 6 days of hope creep in, if I’m honest, finally at rock bottom. There you go, we found out where it is rock bottom is. It is there – Welbeck Street, London around 5pm on Tuesday 22nd October 2019.