1st chemotherapy infusion

Get ready for the "Red Devil"

8 December 2017 - the day that my life would once again change as I know it.  This was the date of my first chemotherapy of 6 sessions that would span the next 18 weeks of my life and what a long 18 weeks that would turn out to be.  Was I apprehensive - yes.  I was nervous - yes. Was I scared - yes.  Did I want to go through with it - no.  Did I have to do it - yes.  Would I be able to cope with it - that I didn't have an answer to at the beginning and it most definitely became the underlying theme throughout my entire chemotherapy treatment.

Now, not to scare anyone at all but this blog post and the following ones, will chart MY experience with chemotherapy.  If you are about to start chemotherapy then don't be put off by anything that you read here, the same goes for those who may be in the middle of treatment as this is MY account of how I felt and how chemotherapy affected MY body and my psyche.  We all handle chemotherapy differently and we are all individuals with different genetic make up and different tolerances.  This is what makes us, us after all.

In the run up to chemotherapy I had tried to mentally prepare myself with what I anticipated it would be like.  I researched - I read articles online and on breast cancer forums and also blog posts of others who had been through chemotherapy just to try and get even a mere understanding of the punishing regime that I was about to put myself through.  Looking back now, I do think that this helped me and also answered some niggling questions in the back of my mind that I'd not spoken to the Medical Team about. 

It had always been the intention that Gary would be with me at each and every one of my chemotherapy appointments as he wanted to be there to support me and he was lucky enough that his employers at the time were giving him time away from work to attend appointments with me (although he ended up through choice working back all the hours he had taken away from work).  It ended up though that on my 1st chemotherapy infusion that he was unable to come with me because he started with a heavy cold a couple of days beforehand.  We both agreed that because he was liable to pass that cold on to others whose immune systems would be shot with the chemotherapy that it was unfair of him to come with me and risk passing on the viral infection.  He was gutted, genuinely gutted and I remember him being upset about it but I really just didn't think it was fair on others on the infusion unit.  So it ended up being one of my close friends who took the day off and came with me for that very first chemotherapy infusion. 

The night before the chemotherapy infusion I went to see one of my favourite bands in Leeds and it was just what I needed and I was lucky enough to meet a couple of the band members before and after the gig which was just amazing!  I was nervous enough the night before the infusion that just sitting in the house would have driven me to distraction so I was glad that I'd gone to the gig.

I remember on the morning of 8 December, waking up and thinking “well, this is it, today's the day.  Can I really go through with this?” and that became the same kind of thought on the morning of my next 5 chemotherapy infusions.  I was nervous that morning, very nervous.  Realistically I had no idea what to expect on arrival at the hospital.  Sure enough I knew what the chemotherapy infusion unit looked like as I'd visited it 48 hours beforehand but on that occasion I'd be able to escape relatively quickly and could put the unit to the back of my mind as I detached myself from it as I was only visiting then, I was an observer - I wasn't a patient.

My friend Charlotte and I arrived in good time and were met by a chemotherapy infusion nurse who walked me round to the area where I would be given my chemotherapy infusion.  I was in Area D and was told this is where I would be for all my infusions.  It was a small room, originally a ward with room for 4 beds.  I remember thinking that it was nice that I was in a smaller room rather than one of the larger rooms as it somehow felt a bit more secluded, a bit more personal.  I was informed that I would have a cannula inserted into the back of my hand on my non-surgery side, then I would be given an anti-sickness tablet followed by a steroid injection through the cannula and then the chemotherapy drugs would be administered.  

Surely enough a different nurse appeared a few minutes later and plunged my hand into some very warm water to get my veins to appear as they'd done their usual disappearing act...and I knew how they felt!  5 minutes later and with a hand as red as a post box, my veins quickly rose to the surface and it was a race to get the cannula in place before they did a disappearing act again.  I won't lie, a cannula inserted into your hand isn't pleasant but it's not excruciating either.  The cannula went in after a couple of attempts and then I was given the anti-sickness tablet and then left for 30 minutes for the tablet to get into my system.  I was told it was the "Rolls Royce" of tablets and would last for 5 days.  That filled me with both confidence and apprehension.

Surely enough 30 minutes later, not one but two nurses returned.  This was due to the fact that 2 nurses have to catalogue and check off the chemotherapy drugs to ensure that the correct drug and dose is given to the correct person. I remember thinking at that moment  “shit is now getting real” and could feel my heart racing.  I'm pretty sure I remember looking at my Fitbit and it was registering my heart rate at over 110bpm - just a regular bit of anxiety for Joanne!

With the drugs and dosage confirmed as correct, it was then time for the first of the two chemotherapy drugs to be administered along with saline.  Everyone's chemotherapy regime is individual and tailored to your individual circumstances and for me my two chemotherapy drugs were - Epirubicin (nicknamed the Red Devil and I would sure enough find out why) and Cyclophosphamide.  
To start with the nurse administered the steroid drug, Dexamethasone which apparently can give you a tingly bottom for a few minutes!  On that first infusion I don't recall it doing that but it did on subsequent infusions and an odd sensation it is too!
  
The first of the drugs to be administered was Epirubicin and it is a deep red colour and the one that I would become to detest due to the 18 weeks of sickness I would come to suffer with thanks to this drug.  Even now just writing the name of this drug and the image of it coming into my mind, I feel physically sick with the hairs stood up on my arms and the back of my neck.  It's amazing the power of the mind where fear and trauma are concerned.

The actual infusion of Epirubicin was pretty straight forward although it was bizarre seeing this deep red drug being syringed into my veins.  I had 3 separate vials of this drug administered before the final much larger syringe of Cyclophosphamide was attached to the cannula.  For reasons unknown, when this drug was first administered, I could "taste" it at the back of my mouth.

Now due to the litre of saline being administered and the water I was drinking, my bladder was very active so to say and I ended up having to have a toilet break between chemotherapy drugs. I had been pre-warned by the nurse that the Epirubicin could cause my wee to go red and she wasn't wrong!  Sure enough on that first wee and for the next 48 hours, everytime I went for a wee it was bright red.  Something else I will never forget.

All in all it took around one hour for the infusion of the two chemotherapy drugs in total and when the last of the Cyclophosphamide was administered, the remaining saline was left to drip through the cannula.  I remember Charlotte asking me if I felt OK and I wasn't lying when I said I felt OK if a little bit like I was "buzzing" as I was chattering away like crazy.  I initially put this down to nerves and the anxiety of the infusion but I came to realize that this was part of the steroid effect too!

Once the saline had finished, the cannula was removed and I was given my "goodie bag" of medications to take home with me which consisted of - Metclopromide (anti-sickness tablets) and three days worth of steroids (to reduce any allergic reactions and to reduce inflammation caused by the chemotherapy drugs).  In later infusions this "goodie bag" would have numerous other medications included to help reduce the harsh side effects that the drugs would have on my body.

I remember being apprehensive but also eager to leave the hospital after the infusion.  I was waiting albeit naively for the barrage of side effects and/or allergic reactions to hit almost immediately and because I felt pretty much OK and buzzing I was waiting for the crash.

We got home and I made myself a sandwich to eat as I was hungry and Gary's mum came round an hour or so later.  By the time Gary arrived home late afternoon I was as relieved to see him as he was to see me.  I was started to feel very tired and wasn't sure whether this was the steroids wearing off or the chemotherapy drugs but all I wanted to do was sleep.

Around 7pm that evening the nausea hit with such a force.  The only way I can describe it, is the level of nausea that you feel just moments before you are actually sick.  It was horrendous, just horrendous and I felt so tired that it was almost like someone had put a needle in my and was draining my energy.  I took some of the Metclopromide tablets and took myself off to bed.  

I remember getting onto my bed and suddenly being so emotional that I was crying.  Gary came into the bedroom and asked me what was wrong and I remember saying to him that  “I want my mum, I wish she was here” and with that he threw his arms around me and gave me a big cuddle.  I cried for a good twenty minutes or so and was rambling on about my mum and how I missed her and that I felt like she had been with me at the hospital, spurring me on to go for the treatment.  

This would become a familiar occurrence on my subsequent chemotherapy infusions....