Pre chemo appointment to get all the prep stuff done was today. I had the day off with my cub as the appointment wasn’t until 3pm and she had one of those off school days! We spent a lovely morning pottering about as per her demands (I know my place!),
After lunch out with the short hair with the parentals I left them to babysit while I was prepared to spend what I thought would only be an hour in the hospital. I mean how long can it take to give some blood and highlight again the side effects of the crazy drugs I am about to be pumped full of.
Arrived at 3pm and waited for the man cub in a flap as he was stuck in traffic, but we made it by the skin of our teeth. Seen by a student nurse to do the pre questionnaire bit (how much alcohol do you drink? – I’m sure if they compared my notes the lies would be obvious!!) and also do MRSA swabs – one up the nose (lovely) and one in the groin area (brand new territory for me!). They also took the all important bloods that have to be checked two days before every time to make sure the blood cells are at a safe level to have the chemo.
Then the ward nurse comes in and we start a very long conversation about me, what I do and what I need to do on this next part of the journey. They asked where I worked and as I work in a building with lots of students they told me it wasn’t a good environment and if I got an infection I could get sepsis (straight to the bad stuff). I was shown a graph of how my immune system drops from Day 1 of chemo to Day 10 where it will be at zero immune system and then climbs back up at Day 14 to Day 21 where I then start the cycle again. My face must have had a mix of devastation and fury at that point. The man cub was nodding and I knew what he was thinking – I know him too well. But he also knows me and knows my stubborn nature. I just can’t compute that I am supposed to stop doing the one thing that keeps me sane at the moment (the cub is in school – she doesn’t need me during the day). I mean, I can redecorate the house from top to bottom, but once I’m done that I’ll probably be looking at committing murder through boredom. And the man cub would be first! Once the nurse recognised the tension in the room, she went and conferred with colleagues and came back with the same answer. And I didn’t have a plan at this point. My mind was working at a million miles an hour but I didn’t have an immediate solution.
Cold capping was discussed again, I didn’t have a definitive answer at this point, it has a chance to work, it has a chance not too. I do not like self imposed uncertainty and this was one of those moments again that I had to make a decision. How quickly did I want to go bald? But I decided that I could wait until the morning of the day! I like to leave it to the last moment (I mean the cub wasn’t named for two days as we couldn’t decide – we like that kind of uncertainty!!).
Then again, we went through the enormous list of side effects that FEC (a whopping three drugs administered one at a time). It has to be given by hand, which Julie the nurse said would take at least half an hour then confessed ‘don’t worry, we all like a chatter’. She doesn’t know me yet – I do not like a chatter!! That will be closed down very quickly.
The list included bruising, bleeding, anaemia, feeling tired (I mean I’d imagine that many drugs could knock a horse out!), hair loss (yep, still getting my head and hair round that), diarrhoea, sore mouth ulcers, loss of appetite (not necessarily a bad thing!), change to taste (metallic), numb or tingly hands, nail changes (nooo, I like my nails, always have done!), muscle or joint pain, early menopause is likely to kick in; a few others mentioned, but my head was exploding again by then.
Two hours after arriving, we were leaving with heads full. My heart was also breaking about how logistically I could manage work and chemo at the same time. I didn’t have any answers there and then but I was going to have to think it through and see what would be sensible but realistic for me and my sanity.
Arriving home to an excitable cub and parentals asking a million questions we still didn’t have all the answers too is always a good leveller!
I was still sure that I had this though. I will get through this.