A trip back in time...
For those of you who are new to these updates here's the emails that we sent out before we went all web crazy and just put them straight up here...
29th August 2012 - COTTON PICC IN
Sorry bad joke.
So here's the update from today's cancer treatment battle.
The PICC (peripherally inserted central catheter) line has been successfully inserted. It was an almost pain free experience and the nurses were lovely.
There were some slightly weird aspects to it, which as I have no squeamishness at all were more fascinating than upsetting.
Firstly it took a few goes to get it in the right place. The line kept taking a left instead of a right and pointing up towards my jugular rather than down towards my heart. They established this by flushing the tube with saline, if I could hear something the line was pointing the wrong way. I've never had my ears syringed by I imagine if it was done from the inside this would be what it sounds like. Anyway after jigging it around and manoeuvring me a bit they got it pointing the right way and the X-ray showed it all in perfectly. I am bionic.
The second slightly weird thing was looking down and seeing a bright blue tube poking out of my arm. I felt a bit like a science fiction character discovering that they're actually robot not human - it looked very terminator/alien.
Then they remove the wire from the tube. The tube itself is too floppy and flexible to be inserted directly into the vein so it's stiffened with a piece of wire. Looking at the bright blue tube pointing out of my arm and seeing a long piece of wire being pulled out was a strange moment. It reminded me of rabbits coming out of magician's hat or hankies from a sleeve - Al commented that you only get those extras with BUPA.
The net result of all this weirdness is that I have a tube and valve attached to my right arm; with a patch of Essex coloured skin (sorry natives) surrounding it. I scared people on the train taking this picture!
Anyway tomorrow I have a pet scan and become radioactive. Then on Friday the drugs start pumping in.
22nd August 2012 - Update 2
Today we had another appointment with Dr (Seb) Cummins (Al and I have now invented an entire life for the poor man based on his name, watch and demeanour). Anyway he was very good and explained everything to us. I will be treated with a mix of chemotherapy and cetuximab (antibodies) the side effects of which are explained in a bit!
Here's the timeline first;
On the 29th of August a PICC line will be placed in my arm. Slightly grossly this runs from my arm through the vein to my heart. We even saw the tube which is thicker than you might imagine. Luckily I am not even vaguely squeamish (unless it's a dead bird or mouse, that is just horrible) and find it more fascinating than completely hideous.
Then on the 31st chemo starts. The initial dose of chemo takes 2 hours, followed by 2 hours of anti-nausea drugs. They then attach a pump to my arm and this sends more chemo and steroids straight into me over a 46 hour period so Saturday and Sunday. The district nurse pops over on Sunday/Monday to remove the pump. And we meet again a week later so she can flush the pump through with saline.
About 10 days later (on the wednesday) I go back to Guildford and have a series of blood tests in prep for more chemotherapy that Friday. The blood tests will determine if the chemo and antibodies are shrinking the tumours and how well my immune system is handling them, what the effect is on my blood count etc.
This happens 6 times, ending in November.
Then there's another load of scans and they decided whether or not (quite likely though) to repeat the treatment before seeing if they can do surgery. And then there'll probably be a load more stuff. Slightly longer than a course of antibiotics!
There are numerous side effects; tiredness is the big one, with some flu type aching (I've never even had flu) and there may be hair loss but more likely just thinning, my immune system will be weak, so properly ill people (bacterial infections) need to stay away, colds are fine. Oh and possibly I may feel nauseas, have constipation or diarrhoea but it's hard to know which one. I'd settle on no nausea and a happy medium for the other two.
It's also highly likely that cetuximab will give me a 'rash' ie acne. It starts about 8 days in, peaks at 2/3 weeks and then improves/settles. Apparently it's absolutely horrible - proper angry sore acne, however it's also meant to be a sign that it's working. As I had a relatively spot free adolescence I reckon a few months now is not a disaster. Although the combination of steroids, chemo and cetuximab could mean I am fat, bald and spotty. So you have been warned that some self-pity is to be expected, and I reckon a little bit allowed.
So that's stage 2 of our cancer journey.
The team at Guildford are fab. I should be able to work on Wednesday Blood Test Wednesday (it's a U2 song now) and the majority of the chemo stuff is over the weekend - which is probably where you all come in. Al may need a break from my whining at times...
Have a great weekend everyone. I am feeling good, partially I am because I had my first dose of steroids today and whilst (apparently) not performance enhancing they have definitely given me a shot of energy. Sadly I am now excluded from major sporting events. I'm also pleased that we moved to this more active phase of the cancer battle. As you know I'm not that great at the waiting around bit!
Al and I met with the gastric oncology specialist today - Dr Cummins. He was very good and explained everything to us really clearly.
Basically I have secondary cancer in my liver and a small amount in my lungs. They do not know where the primary cancer site is. Therefore I have a full colonoscopy on Thursday, a test that I can't remember the name of but where a camera is put down my throat. (sounds vile) and probably a mammogram (although there is no evidence of breast cancer). I have also been provisionally booked for a pet scan (there's so many animals here to choose from...). If all of that is inconclusive then they will do a liver biopsy.
The reason for all the tests is that the form my chemotherapy will take and the prognosis all depends on the cancer type. It's weird to be longing for blood cancer...
On a more positive note Dr Cummins was great. He wants to 'find the primary cancer and salvage this situation' and he believes that I can be treated. And he said I can have a glass of wine or two.
So it still isn't the greatest of news.
One lovely thing is that the full colonoscopy was booked for Friday and when the woman from east surrey hospital told me I cried and said it was Ilias's birthday that day and that he's not had a birthday party before - I hate the thought of it being spoiled. She called me back 10 minutes later and told me that they'd managed to rejig things and move it to Thursday. Next time the faceless NHS is mentioned I'll remember that bit of very human kindness!
Sorry for not phoning round it was a fairly long and slightly stressful day. Only because I now pretty much expect bad news at every hospital appointment.