Down the rabbit hole……

The whole thing about this cancer thing (I refuse to call it a journey, and it’s certainly not an adventure, so for now “thing” will do) is the appointments……. some are just to see how things are going, particularly if you are undergoing treatment and then you get the appointments when results are due.

This week we had one of those. We have been in this cancer “thing” for three years now and they get no easier, if you read cancer forums they mention scanxiety a lot, this is the anxiety caused by scans and results and trust me this is real.

We waited in the waiting room, the waiting area in Derriford is not the best, chairs round the edge of what feels like a walk way and you watch people getting called in for their radiotherapy or Consultant appointments. It reminds me of sitting outside the headmasters office (which I did a few!)

Eventually we were called, Simon was weighed, he gets weighed a lot and we always laugh as his jacket, wallet, keys get removed, like a sort of slimming club, but no prizes in this one.

We went into the Consulting room and waited for a few minutes for the Consultant and Cancer Nurse Specialist to arrive. The usual formalities were said and general enquiries about Simon since they last saw him and then I said “you won’t get much out of us until you tell us the scan results, we need to hear them”…….

when they start with the word “well…..” followed by a pause you know it’s not going to go well, this is when we both, like Alice in Wonderland, fall down a rabbit hole, the world whizzes past you, you can see and hear things going on and you desperately try to grab into something reassuring but that all becomes flimsy and breaks away in your hands…….

What it turns out he said was no change, now whilst no change could have a positive spin it means that in three months on chemo the six little buggers have not reduced in size or anything……..

The world stopped and we hit the bottom of the rabbit hole grabbing each other’s hands…….

We have two options, another three months of chemo, but we would be in the same place with nothing reducing, or a 6 week break and a PET CT scan which would give us a better picture. We went for the latter. Now for some detail…….

we need the 6 week break for the PET CT to give us an accurate picture, chemo can alter the results. Simon also needs the break from treatment, he has endured (and I mean endured) 6 months of chemotherapy every other week and his body needs the break. However, we are on a tight timeline of treatment now, the cetuximab Simon has as part of his chemo is governed from some pretty tight NICE guidelines and if he has a break longer than 8 weeks then the funding and the drug is stopped. So we need the break, PET, results and next appointment to all go like clockwork as we are up against it.

What after the PET? We don’t know, there is a lot of unknowns now, and we are facing the tougher end of this “thing”. If the cancers are no worse than we currently know about Simon could stay in the current chemo regime whilst it is holding it, at some point the cancer will be immune to the treatment (we don’t know when that is).

The tumours in his lungs are not suitable for surgery as they sit in the four corners and apparently taking his lungs out would not help, no shit Sherlock! We also have the neck lymph node and the “thing” that lurks near his aorta. We have written a list of things to ask at our next appointment, these include:

• Radio frequency ablation, they only do one lesion in Plymouth and we have four, who does four?
• Stereotactic ablation, is this possible
• Research trials, can we get on a trial
• Royal Marsden? Is this an option or other centres?

This has been an extraordinary tough week, Simon has convinced himself there is no hope, I am clinging to hope, I haven’t starting singing yet and like to proverbial fat lady I don’t plan on singing for some time.

We are using the next 6 weeks to live a bit, we have taken a week off work, hired a motor home and are planning a road trip…… we need to live, feel the breeze on our faces and stick two fingers up to the “thing” for a while.

As always onwards and upwards Mr C

TTFN