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.



3 comments:

  1. Excellent news Rachel. It will always be a part of your lives but somebody once said to me their aim was not letting it become their whole life although that must be really hard at times.

    I'm glad you can tuck it away for the time being and carry on for the most part with the everyday normal things in life. xx

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  2. What fantastic news. I can only imagine your relief.
    Carolx

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  3. I've only just found this entry, so sorry. What a worry and how horrible to have it all stirred up again and to have to wait.
    I remember when I was told my lump was benign. I was so cued into it being malignant I didn't really understand and had to ask him to say it again.
    It's such a weird experience . . . but I am so, so glad for you both.
    J xxx

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