Sunday, 31 December 2017

Last day of 2017

Glad to see the back of 2017 to be honest. Though January 2018 sees him booked in for a blood test and then the monitoring CT scan is in February. The worrying that had been buried will once again resurface. Then hopefully can be put to bed again until August. I'll be back with an update in February x

Thursday, 12 October 2017

In limbo June 2017

Maybe we spoke too soon. Many weeks have passed since I posted last and reading all the lovely comments makes my heart warm.
Let's get up to date with what's been going on.

Edit- I found this in my drafts. I clearly found it too hard. I was absolutely worried sick.

Wednesday, 11 October 2017

A year ago today.

I cannot quite believe that it was a year ago today that myself, my dad and the HG were already at the hospital, waiting for the nurses to get him prepped and gowned up for surgery. He looked awful. I've never seen him look so frightened. I'll never get that look out of my mind. It was the longest day ever.

It has been a while since I posted. In the following 52 weeks since his life saving surgery he's slowly got back to fitness. I'm not going to lie and say he's back to full fitness yet because he's not. He's back at work doing his heavy outside job. He is far more knackered than he used to be and his side gives him a twinge now and then.

Without going back to my last post I'm not sure what I'd got up to in the story so far. But he had a routine follow up CT scan. Some lymph nodes were enlarged. He was sent for a PET scan. He had to lie still in a darkened room for an hour before the scan, whilst they injected radioactive glucose into him, then lie still for about 45 minutes on the scanner itself. For whatever reasons the follow up appointment was sent a month late but when we got there it wasn't the news we wanted to hear.

Para aortic lymph nodes showed activity. I was thinking to myself why did they not just remove them at the time?? Anyway our options...
Because they weren't 100% sure at the MDT, they wanted to rescan in three months. The next scan would be discussed at a national MDT rather than the regional one. Basically more experts I think it means. After that it would either be
Drugs to shrink - not 'traditional' chemotherapy but highly toxic nasty stuff
Surgery - to be done in Manchester, massive deeply invasive surgery that would entail a scar as big if not bigger than before as it's the aorta deep deep inside the body and it would be a vascular team and resectioning would happen - absolutely terrifying hearing this.
Watch and see.

None of the above is a great choice. Limbo is awful but slightly more bearable than the others.
Time past, an appointment was sent for. Another weekend of doing nothing pre scan. Another shopping trip for me and my dad whilst the HG was in the scanning suite, which, by the way, is a really nice place!

More weeks wait. Neither of us slept much. I was replaying the scene over and over where we walked into a room with lots more people in it and a box of tissues on the table and we were delivered the worst news. My hysterical globus throats came back.
We walked in the room, first thing I clocked on the table was tissues. We sat down and Mr Cutting went through the scenario of what had led us here, then he said the most beautiful thing I ever heard..

I'm pleased to be able to tell you...
We both let out a massive sigh of relief at the same time and I had a little tear in my eye.
Whilst not gone, the lymph nodes had got smaller. This was more than they'd hoped for. It was everything we'd hoped for.
He went on to tell us again, with hand gestures, about how massive the kidney was. I actually asked if they'd photographed it. He said no. He thinks that when they'd lifted the kidney out the bed was massive and there was a whole deep pile of gunk and nastiness and it must be deep deep seated infection. ( In my head I'm thinking why didn't they just suck this out like they do at the dentist?? ) and the lymph nodes are doing their job. So in a nutshell, the MDT are happy for now not to make him endure another PET scan but just to have bloods checked in January and a CT scan in February and to monitor him like this.
Obviously we have to be vigilant and look out for signs he's not well again and it's was quite the comedian from a brief moment of euphoria.
He said go live your lives and he'll see us in six months.
So we are living our lives with a teeny niggle that can be quietened and tucked away more easily than before.

Back in February I guess, to update this record.

Thank you.

Sunday, 12 February 2017

The best news

To cut a long story short.


I will keep this blog open to document medical appointments linked to this episode in our lives. 

Monday, 16 January 2017

A milestone I guess

Today he has gone back to work. It's mid January like the consultant said  but he's only going to take it easy. The heaviest things he's lifted are my Christmas boxes back up into the loft. He's gone with a flea in his ear about making sure he doesn't over do it.

Health wise; he still gets really bad stabbing pains just underneath the drain scar. He describes all sorts of sensations that we put down to nerve damage and sometimes his whole side just hurts even to brush against.
He had really bad NoroVirus in December that hung around for a good two weeks. He'd be fine for a day and then he'd be rushing to the toilet as his bowels attempted to expel his whole digestive system. Not pleasant and he felt like shit. ( pun wholly intended).

Then last night. Really bad, vicious nightsweats. I can't recall the last one he had. Maybe just before Christmas. Last night, the first time he woke was 2.30am absolutely dripping wet through. I can't impress how much I am not exaggerating. Literally dripping with sweat head to toe. He was soaked. The bedding was soaked. Horrible to touch. Pillow, sheet, mattress and quilt. He got dried and sorted. He fell back asleep only to be woken at 3.50am in exactly the same state. No idea why. He says he's not worried about going back to work. He's been looking forward to it. A bit like a caged tiger desperate for freedom. Though it's been so nice to have all the housework and laundry done when I get in from work. Alas, there's no way we can afford for him to be a stay at home dad!
Night sweats are worrying us both.

Last week he went for his blood test and onThursday he goes for his follow up scan - remember it was originally booked for April but I contacted our Macmillan Nurse full of angst ( mostly Night Sweats again )and they brought it forward.
My hysterical globulins is already back and my insomnia. The scan isn't even the hard bit. It's the holding of breath and holding on to hope for the follow up appointment yet to be arranged. It's a case of reality being back and there's nowhere to hide.

We'll soon see won't we. And you know what? Even if it's good news and they say yes he's definitely all clear - right now, I think I'll have trouble believing it.

Until next time ...