So we went at 8pm last night for the follow up appointment with Prof Huddart, having waited 2 weeks for more definite news of Hawksey's position and diagnosis.
Another frustrating appointment, which certainly left us feeing that we will be switching to the alternative consultant in the NY. One thing that particular pissed us off was him saying the biopsy stuff hadn't even arrived at the Marsden yet, despite the 2 week wait – so we were less than pleased with his lack of urgency, as he clearly hadn't even chased it. I would have given it there myself had I known – grr.
But for now what was said, is:
It's a rare form of Prostate cancer – though its still not hugely clear what it is about it that makes it rare (the way the cells look? how late it has been detected?) He said his team would only see maybe 20 cases in their whole careers that look like this. Not great.
It's still not 100% confirmed whether, where and to what extent the disease has spread. One minute he says it can be seen in the lymph nodes and some spots in the bone, but he wants to re-confirm this with a full body MRI, probably in the NY now. So its feeling more likely than not that there is some spread, we just need to know how much, how far and how bad it is.
He doesn't for now recommend surgery to remove the tumour in the prostrate. Because if it has spread then it may be too late to do this? A bit counter-intuitive to us as we were thinking it would always be better to remove the source of the problem or it will just keep pumping out cancerous cells – so this is one thing we want the other chap to provide some clarity on.
H is already on some treatment, hormone tablets, taken daily. And it looks like he will be starting chemo in January once the scan has been done, assessed and a final pronouncement made on what he has and how bad it is.
This chemo will be once every three weeks, for an hour or so's IV infusion. Probably 6 rounds of this, which would take us to May-ish. Annoyingly as ever, it will involve steroids (welcome to the land of puffy red cheeks, hunger and lack of sleep) and for H, losing his hair as it's one of those chemo drugs that does this. The other side effects – tiredness, nerve damage etc – we will have to see what happens. My poor boy, you never want to welcome anyone else into this shit way of living, so we will have to find a way through it together.
And already it is impacting on our planned year ahead – H is due to go to Australia for a work conference in March/April and already we have to think about if this will work for him. Right now, he really wants to go, but 24 hours on a plane full of bugs may not be the best idea by spring time. Such a shame, when you want to give life your best shot, but treatment and reactions to it may scupper the best laid plans.
On top of this he is likely to have radiotherapy, but this wouldn't start till the end of the chemo. And all this will depend to an extent on how he responds to treatment. So there will be scans and blood tests and anything else needed to assess if the picture looks better as the months progress.
All this feels pretty horrible right now. We are both scared as we just don't know how good, bad or ugly this is as yet. And you never know how things will respond to treatment – sometimes things go much better than expected (as with me, so far) and sometimes they just don't.
So we're trying to be chin up about Christmas, even though we are at times feeling pretty flat. Plus I've got a hairy old cold, upset innards and one final round of chemo tomorrow just to add to the festive cheer. Thanks David Rea for the bottle of Sipsmiths on our dog walk this morning – we might be cracking into it tonight.
And of course it doesn't feel remotely fair because cancer never bloody well does. We are both decent humans, trying our best, and to both be hit by this shit is pretty unbelievable. We're trying to joke a bit ('let's sign up for couple's chemo') but even the CCL staff have been pretty aghast – they couldn't work out why he was on the treatment bed and I was in the visitor chair. Well, you couldn't make it up, could you? What are the odds…
So for now, we keep on trucking. Because as time goes on it will be all the more important to make the most of every day. So social things, yes please. As befits two 50-somethings – not every night but a few to perk up the week/ends would be good. And your forgiveness for those days when we have to cancel because one of us might not be on the best form, sorry.
And we will keep updating via here – and H's new blog (which obvs won't be as good as mine. Competitive Hawkes blogging, who'd have thought it??) So then we don't have to keep talking about health stuff over and over, and you don't have to feel you need to bring it up beyond a normal 'so how are you?' It's worked well for me over the years and I will update about him on here as well.
Hopefully H will carry on working in 2019 but we'll have to see what impact the treatment has. And I – very selfishly as his wife – want a substantial piece of the Hawksey action, so will be encouraging him to work less than full weeks, and have a few nights away together as often as we can. Now those Mr & Mrs Smith etc birthday vouchers can come into their own…
So for now, keep all your fingers crossed, get your prayer groups busy if you have them, and let's hope the Jan full diagnosis is more positive than it might otherwise be.
Lots of love to you all – Scotty x