Letter from the North

Scan results week – 22-Sep-2018

You need to know Jane is VERY reluctant to sit on my lap and will only do so on the basis I don’t touch her! Teresa was away the day I took this and she had no alternative so she “tolerated” my hand, there’s a reason she is affectionately called “The B*tch” 🙂 

Am I really that far behind, over a month – yup, there’s a lot in the queue in various states of edit, but it’s a struggle at the moment to do that last step to get them out, not helped by Teresa being so busy with her own stuff. 

Sat 22-Sep-2018   

I was completely shattered after our couple of days swanning around St. Ives and gourmandising at The Old Coastguard and The Gurnard’s Head (colloquially known as ‘The Gonad’) but I joined Teresa for a quick trip into Penzance to have coffee with our visitors before dropping them off at the station. Originally I’d  said I wouldn’t go in today as I needed a rest day, however Teresa was not feeling great and they were leaving on an earlier train so as it would be just an hour for coffee at their hotel and my Disabled badge meant I could park on the double yellow lines right opposite (first time I’ve taken advantage of that option) and of course in a safe place! 

The rest of the day was spent somewhat comatose (by me) 

Sun 23-Sep-2018   

Loads of poo, more poo than you can shake a stick at (anyone for Pooh sticks?) 

Mon 24-Sep-2018   

Off I went at 8.00 am for a blood test, it took two attempts to get the blood out, not sure why. 

I haven’t gone on about it, but scan results are due on Wednesday and it is very much on both our minds, so while there have been no countdowns, we are in the depths of Scanxiety, whilst doing our best to get on with our lives. 

Mind you, it’s difficult to just “get on” because our normal isn’t what we always understood normal to be, oh well, fingers crossed but no breath-holding 

Tue 25-Sep-2018   

Off to the office in Penryn, just head down and work 

Tired as usual and afternoon nap when I got home 

Wed 26-Sep-2018   

Not a bad night considering what’s going on today. 

Off we went to Truro –  we were early as I always am, getting there 9.00 am for a 9:15 appointment. We were called in to the consulting room within a few minutes but then sat waiting for 15-20 mins (for good reason as it turns out). 

There follows an edited version of my Facebook posts on the subject in case it looks familiar. 

Usually there are five days between CT scan and results being available. This time there were twelve days but no results available. As a result, the Oncologist cannot say for sure what is going on! Based on his own observations (during that 15-minute delay before seeing us) things are “stable” i.e. no obvious change or new additions. However, until the Radiologist does his report we won’t know for sure. 

I did get a chance to see the CT scan itself, it is not a pretty sight there is a solid mass of tumours (in the lymph nodes) all the way down my body (in the area behind the breastbone), wrapped around all the major blood vessels to and from the heart, lungs, kidney, liver, …, once the cancer manages to grow some more the whole house of cards will come tumbling down 🙁 . So, those drugs continuing to restrict growth is rather important! 

Oh, and you know that blood test we did on Monday, well it’s stuck in a backlog of thousands of tests in haematology and can we do another “urgent” one please, right now! So, yet another needle in the arm! 

The blood test is important as it indicates if there is damage to the liver, kidney, bones, heart, …, so far, it’s been Ok, but we don’t know that it still is. 

It will probably now be weeks (you’d think days, but once the “appointment” is done everything goes into a slow lane) until we find out the true state of things, so: 

In conclusion, all is probably OK, but we’ll let you know when we get our act together! 

Waiting for results is always tough, that’s why we have the word Scanxiety for those of us waiting for CT scans of cancer growth. THAT’s the hard bit, the tension builds and builds and then … nothing … We know it happens like that sometimes, the NHS is totally overloaded, but, when it’s your life on the line, it feels personal even though you know it’s not, it just happens some time. Waiting when you know the day and time to find out is tough, waiting when you have no idea if it will be days or weeks is REALLY tough. 

I did ask the Oncologist for an alternative anti-nausea drug to Domperidone as it was useless, he prescribed Metoclopramide. 

Ondansetron is brilliant at dealing with the nausea, however the body gets used to it and it stops working hence my on/off pattern of three days on and one day off, two days on, one day off. That has worked for a while with the Domperidone days (the two off days) getting more useless. I now need to take a couple of weeks “holiday” from the Ondansetron as it was tailing off even when I took it that on/off way. So, I needed to take a 10-day break from Ondansetron to reset my system and I needed a more effective #2 than Domperidone. I rarely mention the nausea because it is so well managed most of the time, BUT Ondansetron just like the cancer drugs stops working 🙁 fortunately unlike the cancer drugs if you stop taking it for a while it starts working again. If ONLY the cancer drugs behaved the same, but they don’t and with this cancer in me, we can’t afford ANY downtime of not working. 

Got home and crashed out for the rest of the day. 

Thu 27-Sep-2018   

Work at home, diarrhoea too bad to risk driving. 

Teresa had a talk this evening in St Just at the library

The poo was under control so off I went in support of her – as she has been for me every time I’ve done any public speaking. 

She was fantastic, of course she was, I didn’t marry someone less than fantastic, do I look like an idiot?

Fri 28-Sep-2018   

Today was slow starting. I did have a good night and felt really bouncy and alert at 9.00am, but now at 10.00 am I can feel things slowing down 🙁  

Just getting on with work, bit of head banging against a brick wall problem, but getting there… 

Postscript 

Unless you experience it, the strain of waiting for results on the progression of a fatal disease is really tough, not getting those results when you expect them and an indeterminate wait until you do is torture and yet somehow you need to function, the disease cannot take over, but that doesn’t mean the waiting is easy, the associated stress can seep into all sorts of places, extra fatigue, misunderstandings (between two partners, both suffering in different ways), …  

We will both be glad when we find out what is going on

Postscript 2

We did find out a week later, it was rather curates egg, mainly good, some worrying, updates in a later blog, as usual, the immediate news appears on Facebook, but it always gets here eventually 🙂 

Postscript 3

During the final editing of this (today) I spotted this blog from Rachael Bland (I’ve talked about her before), do read all of her blog, but look at the sections that start with Scanxiety – different cancer but I experience EVERYTHING she discussed. It’s no fun even when it looks like it’s “OK” from the outside.

The Bean, Pendeen, 22-Oct-2018 

 

1 Comment

  • Victoria Osborne-Broad

    Thank you as always for the updates, for taking the time and the considerable trouble it involves. I love the ‘Pooh sticks’ comment (I grew up with Winnie-the-Pooh’. And if you can still keep a sense of humour that is so important. Keeping aol toes and fingers crossed for you – yes, I can do that.

    Love, Victoria

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