Chemo 1 update

I arrive at the chemo unit in good time just before 9am on Tuesday 22 December, just under a week ago. Pleasant winter day, not too cold, not actually raining.

The chemo unit is a big airy room set out with comfy chairs and a central nurses station. Nice windows looking across the fields to the Hampshire countryside. A few others arrive - they've clearly been doing this for a while. I feel like the new girl at school, shown to my place in the classroom, not quite sure what's going to happen - except of course, that it's probably not going to be nice.

The chemotherapy treatment I'm having is called FOLFIRINOX and consists of three different cytotoxic drugs (cyto = cells, toxic = well, you know... so cytotoxic drugs kill cancer cells. Unfortunately they also kill other cells too). There's a fourth drug in the 'cocktail' which improves the effectiveness of one of the others.

They will give the drugs through the PICC line in my arm (little plastic tube which goes from my arm to the main vein above my heart).

I have a friendly nurse called Tash who is going to look after me for the day. She explains what is going to happen, and gives me my first lot of anti-sickness tablets to take.  The unit is beginning to fill up.

The administrator comes round to sort out my next lot of appointments, which involves a good deal of juggling - I have to have a blood test, dressing changes, an appointment with the oncologist and then the next lot of chemo, all fitting into a two week cycle, and not clashing with other people's cycles. I'm offered a hot drink. The atmosphere is calm and purposeful.

Then Tash comes to set up the first drug. Number one is oxaliplatin which is attached to a drip into the PICC line, and infused over a couple of hours. Having taken the anti-sickness tablets as advised, I don't get any nausea on the day. The main side effect I do get is tingling or pins and needles in my hands - especially when they get cold. I accidentally put my hands under a cold tap after going to the loo and quickly know about it! I've learnt now to let the tap run warm first...

After the oxaliplatin infusion is complete, they move me on to drug number two: irinotecan. They usually do this with a fairly slow infusion - 90 minutes - the first time, and can speed it up on subsequent treatments.

By this time, I'm feeling pretty tired and washed out, and after half an hour or so, I definitely don't feel well. My heart is thumping, I'm feeling sweaty and a bit short of breath and the tip of my nose and around my lips are beginning to go numb. 

The nurses quickly stop the infusion, the on-call doctor checks me over and after half an hour or so I am beginning to feel a bit better. From everyone's reactions, I don't think I looked good.

After more rest, we decide to give it another go. I manage another 40 minutes I think, but again begin to get numbness around my face and mouth, including my tongue, which makes my speech slur. Weirdly I have had this sensation before in my life but only when I have drunk a LOT of red wine.

There's also some swelling under my jaw which I think is worrying the doctor more, and she's concerned I might be going into a full-scale allergic reaction so she she gives me two drugs to stop this - adrenaline and piriton. 

Adrenaline is the 'fight or flight' hormone which gets the body ready for action. It opens up all the blood vessels and airways and stimulates the heart. So the shot of adrenaline puts my heart into overdrive and makes the muscles in my legs start twitching. Piriton is a standard anti-allergic drug which I used to take years ago for hay fever. It damps down the allergic reaction, but also causes drowsiness.

So the combination of both drugs sends me to sleep almost immediately while leaving my heart still  thumping and my legs still twitching...

When I wake up again I'm feeling a bit better and gradually things calm down. By this time it's nearly 5pm - I've been in the unit since 9am and my friend is waiting outside in the car to take me home.

But then they tell me that they need to keep me under observation for six hours after the adrenaline injection, just to be sure there are no long term problems. It's also clear that they aren't going to risk giving me drug number 3 (fluorouracil) which would normally be given through a pump which I would go home with.

To begin with it looks like I might be admitted to the hospital overnight and I even text my husband with a list of things I'll need. But then reality reasserts itself. It's December, the week before Christmas, the new variant of COVID is taking root, there really is not going to be a bed for me. Better to sit it out in A&E and then go home.

So around 6pm (I think?) I get in the back of an ambulance for the short journey to the main hospital A&E department and spend the evening sitting in a chilly bay, hooked up to a heart monitor, watching life unfolding before me. There's another blog on the two sides of the NHS I've seen, but that's not for today.

Eventually I'm seen by a doctor, who does a blood test and an ECG showing everything's OK, and I'm allowed home. My friend is there, bless her.

The next few days... have been tough. Anti-sickness tablets have worked and I've managed a short walk most days. But I'm still tired, I've had to learn to pace myself (something I'm not very good at doing), I have no appetite and don't feel great.

I've got another week to recover, and then we'll see what the oncologist recommends for the next treatment. I expect they will adjust the dosages.

Christmas has happened - we decided just to chill on the 25th, and managed to cook the turkey on Boxing Day. Lots of lovely people have given me lots of lovely chocolate and books. I think it's been as good as it could be under the circumstances. 

This blog is dedicated to Caroline for being there with a smile and her wheels when I needed her.