First Chemo.

 Our first chemo experience has been far from normal!

As advised Tony started his steroids the day before chemo (dexamethasone). Steroids are given to take the day before, the day of, and the day after chemo. Our understanding is they help with the side effects and will giveTony a bit of a boost. It's advised to take them at breakfast and lunch as they can cause insomnia if you take them too late in the day.

We arrived at the chemo ward nice and early. We took plenty of layers for Tony, aware that the chemo would cause an extreme sensitivity to cold, lots of snacks and a book to read as we were expecting to be at the hospital for up to 6 hours.

We were taken into the chemo lounge which is a really bright and calming space, there's a tv on the wall playing relaxing music, the nurses are all upbeat and friendly. Tony got comfortable in one of the patient's chairs and one of the chemo nurses walked us through what to expect for the day.

Tony's PICC line was flushed and he was plugged into his first infusion of the day. While the first lot of drugs went in the nurse sat with us and walked us through Tony's cancer diary. This is a handy book they give you that contains everything you need to get through chemo. It lists what drugs have been given in clinic and any side effects they may cause. There is a list of medications they send you home with (Anti sickness tablets, upset stomach meds, steroids ready for next treatment, along with doses and instructions on how and when to take things. There is a diary to record side effects so you can discuss anything you experience during treatment with your oncologist without forgetting things. There is also a traffic light system for side effects, which is a huge help. If you're like Tony and myself and hate feeling like you're bothering people, the traffic light system really helps! (I'll explore the cancer book in more detail in another post)

The first infusion took an hour, but with set up time and introductions the total time was closer to 2 hours. Infusions 2 and 3 went in at the same time and took 2 hours. During the infusions Tony was checked on regularily by nurses, offered plenty of cups of tea, snacks and lunch.

Tony was then unplugged from the drip machine and attached to his 5FU bottle. As mentioned in other posts this is the final drug in this chemo reigeme and is taken home attached to your PICC line, infusing slowly over 24 hours. The district nurse was booked in for the next day to disconnect the pump and dispose of it. I'll try and put a post together with tips on carrying the pump another day.

Once we were set and ready to go home, Tony wrapped up and we headed home.

The side effects seemed fairly minimal to start with, there was a slight sensitivity to cold, he noticed it most when getting milk out of the fridge or holding our dog's food tins to prep his dinner. Other than that, all seemed well. I would add that i found Tony smelt funny after chemo, not sure if that was his body expelling the drugs, but it was certainly noticcable!

The following day the district nurse came and disconnected the pump. First chemo cycle smashed, or so we thought!

At around 8pm Tony started with chest pains. Originally, based on the information we had, we believed this was a spasm in the oesophagus. However as time passed the pain became worse. We checked the side effects traffic light system and as this symptom was ''red'' then we had to call the 24 hour chemo advice line.

One thing i will say before we carry on this part of our story is that we mention this simply because it happened, everything we put here is honest and our experience. Nothing is meant to cause fear or worry for anyone else. As i've said before, cancer and it's treatment is personalised, our experience doesn't mean that's ''normal''.

We relayed Tony's symptoms to the advice line who advised they would call us back with next steps. During that time we took Tony's blood pressure, ecg and monitored his pulse. The heart monitor advised there was arterial fibrilation. (As i'm type 1 diabetic we have a pretty fancy pants first aid kit with literally everything in it!) Being honest, we doubted this result was accurate as there were no other signs of heart issues. He wasn't pale or sweaty, the wasn't any pain radiating down his arm.

This is something that will stick with me for quite some time, it's something I feel very guilty about. I'm trained in first aid, life support and so on. I was so focused on it being a ''cancer'' thing that his heart didn't cross my mind. It should have. I'd thought about alergic reactions, muscle spasms, clots. I didn't think heart.

The chemo line advised we should go to A&E for a heart scan to be on the safe side. By this point it's 10.30pm, the roads outside are sheet ice, I drive a rear wheel drive sports car and there are no ambulances for at least 2 hours!

Fab. No pressure.

We threw a bag together with supplies for me and Tony's chemo book, abandoned our dog at home and made a very cautious drive up to the hospital. As we're immunocompromised we were able to go into a side room in A&E where we waited for tests. Tony was in huge amounts of pain and pain killers didn't seem to help. An echo was performed, bloods taken and asprin given, alongside codine and paracetamol. Tony slept inbetween the ''waves of pain'' as he described them. The codine seemed to work with the pain and he was able to sleep in 4 hour batches, as the pain meds wore off the pain would start again. I stayed awake, aware that this could be heart related my brain had shifted into high alert mode. (Side note, I have PTSD, high alert mode is something that happens as a result of that) As the hours ticked by I monitored him as closley as I could. Seeing someone you loe go through those levels of pain is unbearable. I felt utterly useless, I felt guilty I hadn't done more.

 At around 8am on the 8th we were moved into urgent care, no closer to finding out what was wrong. Pain medication at regular intervals continued, as the day went on it seemed the time inbetween the waves of pain became longer.

We had visits during the day from the GI team who were certain the issue we had faced was a reaction to the chemo, everyone seemed happy that the pain was undercontrol and we were told he'd be discharged that afternoon following some check up bloods.

Blood results = not good.

The bloods showed elivated troponin, Even a slight increase in the troponin level will often mean there has been some damage to the heart. Very high levels of troponin are a sign that a heart attack has occurred. This meant that rather than being discharged Tony was now receiving treatment for a suspected heart attack. We were advised he'd be staying in urgent care as there was a 60 hour wait for a bed on a cardiac ward, they would continue to monitor his heart, run some test and hopfully send us home the next day. 

We were both distraught, as if cancer isn't enough, now there's a heart issue too! Not what you expect to hear as healthy eating, long distance walking gym go-ers!

While Tony slept that evening I headed home having been awake since 8am on the 7th. Niether of us slept much, checking in with eachother through the night. In the early hours on the 9th Tony was moved to the Cardiac Care Unit, in a private room so as to reduce the risk of catching any germs or illnesses.

I joined him just after 9am for the doctors rounds. The doctor explained that the blood tests did show elevated Trop levels, 256, but not high enough to point to a heart attack. The doctor suspected a rare side effect to the 5FU chemo drug. By rare, we mean really rare at only 3% globally!

We were advised he's stay in for another 24hrs, have a full heart check (EKG and ECG) and we'd then look at discharge.

The side effect or reaction caused a swelling in the space around the heart. The best way to describe it is to imagine the heart is wrapped in cling film, between the cling film and the heart swells, putting the heart under pressure, this is called Myocarditis. The echo showed some slight damage to the heart. On the 10th we were cleared for discharge and sent home with a bag of heart drugs to help the heart recover.

We arrived back home after 5pm on the 10th. Safe to say that our start to cancer treatment was far from a smooth ride. We were both knackered, p*ssed off and frustrated.

We spent that weekend at home doing not a lot. Tony's body had taken a battering, the heart medication was draining and the cold sensitivity caused by the chemo was strong too.

Oncology had booked us in to see them on the 13th to discuss what had happened and make a plan going forward.

We know our experience is super rare. We prepared for all possible side effects, but not this! As i've said in other posts, try to be prepared for everything. Don't be afraid of asking for help and always, always check your symptoms