That letter

I'm due bloods on Wednesday, so rang doctors today to find out what was happening. I was told to ring back Wednesday morning. I should be picking up my new batch of tablets on Thursday.

I’m going to the hospital for a CT scan & bloods on Friday, and then again on Monday for another couple of hours in the chemo suite for immunotherapy. (I’m on a kinase inhibitor too.) Future ‘talking’ appointments are being changed to phone calls but there hasn’t been any suggestion that they’ll change or cancel my treatment. Yet. 

Yup, can’t do bloods over the phone. 

All the very best, everyone. 

-Mark 

That’s reassuring Mark.

:-) To be honest, I’ve lost track of what’s reassuring and what isn’t. 

For example, having established, through trial and particularly error, that I can manage three hours of steady physical activity at a time, I’d got into a good daily rhythm of springtime gardening work - figuring that, in the current situation, being alone in someone else’s garden was as safe a place to be as any and safer than most, happy to be earning at least some money while not putting myself or anyone else at risk. 

Ok, so now we’re on lockdown I can’t do that. We have to shut ourselves away for our own safety. I get that. But then I still have to spend quite a bit of time in a big hospital which has to be the riskiest place to be, even though I’m only going there for treatment that is intended to keep me, er, healthy. 

I hardly know which way’s UP any more :-) 

I just meant that it’s reassuring that treatment is going ahead. The rest is pretty awful. 

I was due to have a routine CT scan on Friday 27/3, so I cancelled it, being " extremely vulnerable" due to taking Pazopanib. I've not yet had a letter to confirm that  status, I'm  just going on the gov uk info. Hope I made the right decision, as I'd prefer to know all is OK n already had "scanxiety". You simply have to do your best, don't you?

I’m going ahead with everything, virus or not. Friday’s CT scan is my first since starting on this treatment and I’m eager to know if and how well it’s working. (I’m more intrigued than “scanxious”)  

I had a scan last Sunday. It was two months overdue because of hitches in the booking system, so I decided to go ahead with it. I coped with uncertainty around cancer by keeping busy and planning visits with the family. Now there’s a void and I’m also unsure how the virus will affect my cancer treatment. I think I’ve let my upbeat mask slip a bit in the last few days.

The trial I am on usually requires me to attend every six weeks for blood tests and consultation and every twelve weeks for a CT scan.  I am not due to attend for a few weeks yet and have not attempted to find out what will happen as I figure the NHS staff have enough to deal with at the moment without me bothering them.  I see no reason at the moment why the consultation should not be over the phone although as the blood test is taken on the same day at the same place it may well be that it occurs face to face.  My treatment on the trial is determined by the CT scan so I anticipate that this will go ahead as usual as otherwise the results will not be valid.

Having complained about having to change hospital recently this might now prove to be advantageous.  At the hospital I used to attend I had to walk through the general hospital to get to the departments I required.  At the new one the building I attend is purely for cancer patients.  Having said that, they did report a recent coronavirus death at the hospital and it was someone who's underlying problem was cancer so they were in the unit I will be going to.

I didn't receive a letter yet saying if I am vulnerable but then again the post is always late around here.

We are coping OK here despite having four of us stuck in the house tripping over each other.  If anyone is interested Lass has produced a list of things to do whilst confined to your home.  It is in the Incurables group click here but is also featured on the front page of the Online Community page if you wanted to have a look.  It has loads of suggestions if anyone is struggling to occupy their time or needs a bit of distraction.

Wishing everyone all the best,

Gragon xx

Thanks Gragon for highlighting  Lass's post of ideas 

Sue