The biggest concern since finding out we were back in this has been trying to measure how different things will be this time round. I'm a terrible second guesser, by that I mean when I'm placed in a desperate situation like this, I will unhappily sit around thinking of the hundred and one ways that things can possibly play out (positive and negative) based only on the limited information I have. I guess some people have the ability to compartmentalise these things, sweep them under the carpet and keep on truckin'... not me I'm afraid, I'm a total whittler!
We have plodded through this last week taking each day an hour at a time while we wait for the fragments of information to be fed to us as this new chapter unfolds. Wednesday saw us driving over for a late appointment at Dorset Hospital. The mobile PET/CT scanning unit that services the South West was making its weekly stop there and this was the quickest available appointment. It was nice to spend time with Bethan and we stayed over with family close by, which offered a welcome dose of laughter and helped to chase away the looming tension following the scan. This scan forms the final piece of the diagnosis and will show the current state of the tumor(s) and how they are acting in the body. It will also show any metastasis (spreading of the cancer) to bone, spine and major organs. If this is the case it will seriously effect the treatment and whether they will be looking to cure (gone for good) or just treat (suppress and slow growth) the cancer. We were told that following the scan we will receive a call on Friday providing us with the scan report.
We drove back home on the Thursday and it was hard not to think about what is just around the corner. Visiting Poole hospital was a stark reminder of the cold, harsh world of hospitals and cancer care. The everlasting corridors, the "brutal" architecture with wall to wall sickness built in as standard.... it's just grim! It brought the last time I went through this flooding back in waves of fear and anxiety.
We arrived back home early Thursday evening and the kids were up and about, excited to see us. The Grandma's had been looking after them both while we were away so they had been spoilt crazy. We were both very tired from the drive and whole Dorset experience, so weren't to far behind the kids in hitting the hay.
I woke at 4.30am the following morning, the wheels in my head turning. I went down stairs and lay in the sofa in the dark once again summing up all the possibilities that lay ahead. Today was the day we would get a glimpse into the future as the final piece of the diagnostic puzzle falls into place.
The phone rang at 10.55am. I almost dropped my coffee muddling to answer the "No Caller ID" phone call... It was Jackie, the Head and Neck Specialist Nurse. "No report yet, but I thought I would call and let you know all your other info has been sent to The Royal Marsden for your Monday afternoon appointment". I have been referred to a team at "The Marsden" that have a more specialist interest in what I have. The team at Truro were very open in saying that because of its rarity they would be "looking wider" at ways of solving the issue. The plan is that we fly over for the day to London and see Professor Nutting, or as I can't stop calling him "The Nutty Professor". I'm pretty sure I'm going to let that slip at some point... watch this space.
From what I've been able to read and gather together he seems to be one of the best Oncology guys in the country and works as part of a clinical team made up of equally skilled chaps who all specialise in folk like me with rare or hard to treat situations.
"The scan report is not ready yet, but I will call you later once I have it here in front of me" Jackie said. So, I wait...
Eventually the call comes through. Jackie says that she is going to read it as it is. She lists and series of codes and numbers and then tiny bits of positive information like "no evidence of recurrent disease in any other areas". Once she finishes reading the report I instantly start with my storm of questions. The bottom line (and neither of us are doctors), is that the tumor is there in my nasal space and has begun to spread to a Lymph node in my neck... that's it, not spine, not skull, not lungs or any other vital organs as can be the case. This was great news!.... well not great, but it must surely mean we are able to have a good crack at it from a good place? "Yes, I would think so"... Jackie agreed, "Prof Nutting will offer far greater clarity on Monday, and while this is a different situation from last time I don't think it's quite as bad as you possibly imagined it, is it?". Jackie was right, we had had far to long to work out every horrific scenario imaginable.... yes, it's still cancer, cancer that has returned having had everything thrown at it...but for some reason and I'm not sure why, for the first time it feels like it's going to be okay... we just have to hear that in London on Monday.
Couple of big thank you's... Chris and his Brother Paul Stimpson. Close and not so close friends for your amazing concern and support. Easy to think it makes no odds, you're wrong it makes a massive difference! Family near and far for your everlasting love and support.
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