37.9 Degrees

I had great plans for this next blog. I was going to talk all about some of the scary things I've seen and heard that will haunt me forever. I was going to go into great detail about what it feels like to get chemo. I was going to talk about the nurses who have been my guardian angels every hour of every day and how they have calmly answered every panicked question I've thrown their way.

Excluding about a week with very heavy medication, I have managed to stay upbeat. I've had a fighting attitude and have been supported from more people than I can count. Every day I've gotten up, put my make up on, dressed and attempted to feel like me. I knew I had about two weeks before my hair would start to fall out, so I got it chopped up to my chin to start the process.

Every day has been spent without a moment of privacy or dignity. My every bodily function is questioned and studied and usually in front of Paul. Every time you think you have five minutes to use the bathroom, someone else comes looking for you and stage fright kicks in.

All this wasn't enough to stop my determination and fighting spirit. I felt my family got strength from me feeling strong. As long as I was doing ok, they could somewhat relax. I knew there would be a moment. A trigger. There had to be something. It just wasn't what I expected it to be.

Temperatures
Let me start by explaining something about a course of chemo. Once it's finished, the chemo has killed everything it can. So while it hopefully kills all the cancer cells, it also kills all your good cells. Red Blood Cells, White Blood Cells, and the famous Neutrophils. As a quick reminder, Neutrophils fight infections, so after the chemo, when you don't have any of these, you get infections. There's no avoiding this, it just happens. Infection shows itself through your temperature. 36.5 - 37.5 is normal, if it hits 38.0, you have a temperature. Immediately they give you a blood test, a chest x-ray, they take a urine sample and then they phone the doctor to find out what you require. 

There are at least 3 levels of antibiotic. 

• Level 1 - when you initially hit 38.0 
• Level 2 (pretty hardcore with many side effects) - when 24 hours has passed since your first fever and your temperature is still spiking. 
• Level 3 - Thankfully I haven't met level 3 yet 

You are only allowed to receive paracetamol once you have hit 38.0 or above and all diagnostics have been collected. I had a traumatic time with Level 2 so most of my days are spent dreading the hourly temperature checks as I am constantly on Level 1. They never actually find an infection. It's just your body fighting everything until your Neutrophils start to reform.

Goodbye Hair

On day 14, I put the brush to my hair and a massive clump of hair came out. I was ok though. I was prepared for this. The plan was, as soon as this happened and I got to see for myself - Yes you are definitely losing your hair - I knew it was time to shave it. I contacted Paul and we decided to have some nice food and then just have a bit of fun with it all. Paul shaved his head first, a true sign of his commitment to me. We did my undercut first and then I told him to just go for it. We laughed and joked throughout instead of wallowing. Once it was done we took a selfie and sent it to our families who all thought it actually looked quite well. 

Once everything was over and done with, I felt relieved. That night I spent an hour with an extra strong lint roller going over all my clothes that my shedding hair had destroyed. It felt humiliating walking around with long hair all over my clothes so I was genuinely relieved to shave it off.

The next day, everyone was so complimentary. The nurses, my family, my friends, they all told me I had the face for it and they were proud of how much I was kicking ass with everything. I took their support as it was intended, but everyone knew that I just wanted my hair back. This was just a necessary evil for me to get better and I was ok with that.

Humiliation

Can you be humiliated on your own when nobody is around to see it?

I woke up and straight away I knew I was fighting something. My temperature was 37.8 which is very high for first thing in the morning. I went through the day, trying to keep my mood as upbeat as possible but at the same time I could hardly keep my eyes open.

My temperature was up and down all day and the exhaustion just got stronger and impossible to ignore. Finally at 9pm I rang the nurse button. The night nurse came in looking at me nervously until I told her. "I think I have a temperature. My skin hurts all over". You can see the genuine sympathy they feel for you when you go above 38 degrees. As well as not feeling well, they know how much you have to go through before you can even have relief for that temperature. The skin pain and the shakes continue to drain you until finally they can give you medicine. 

Throughout the night, every time the paracetamol wore off, I could feel the skin pain come back and each time, the temperature was a little higher. This continued into the next day, exhausting me, depressing me. It's not just the skin pain though. You go off your food but then the more medication you get with no food, the sicker you feel. This cycle continues for 24 hours at which point, if you spike again (which I did), you have to get all diagnostic tests done again while you shiver in bed. Then they have to contact the doctor to find out if you will continue with Level 1 or if it's time for Level 2.

All of this is enough to dampen your spirit and make you crave solitude so that you can just stare into space until you feel better. It doesn't matter how supportive people are, sometimes being alone is the only answer. That is usually the time when you hit bottom. The thing to push you over the edge happens because you had time to think about it.

Every night I have had to sleep with some sort of scarf around my head to protect my pillow from stubble. Nobody tells you that when you shave your head and think you're deadly. Nobody tells you that you will still shed like an unbrushed cat and your pillows will be destroyed. You also never hear how hot your shaved head is going to feel. Everything you put on it immediately causes you to burn up.

So here it is. The point to my second blog. A confession of my most humiliating moment since I got here. I am hoping that sharing it will help me to forget about it and go back to concentrating on getting better.

I decided to put some make up on despite the fevers. I just wanted to be able to look in the mirror without looking sick. I took my hat off and looked inside. It was absolutely destroyed with stubble. Then I took a good long look at my head. I realised very quickly the it wasn't uneven because it had been shaved that way, It was uneven because half of it had already detached and was just sticking out everywhere. The chrome dome was approaching fast and thanks to my fever, I'm too hot to wear my wig.

I stood there for a good ten minutes, alternating between make up and staring at my head. Getting flashbacks of all the compliments I had received on my cool look. Now its just a patchy mess ready to ruin my pillows. I looked around the room. The brush wasn't going to work for this. I've no clippers or razor with me and I'm too weak to use them anyway. Then it caught my eye. A single large blob of a tear escaped my eye when I realised what I had to do.

Taking a deep breath, I rolled the extra sticky lint roller from the nape of my neck up to my forehead. The sheet was full already. Next sheet, all over the sides. Next sheet, all over the sides again. Fat tears silently soaked my face as I knew at any moment, a nurse would be in looking for me and I would have to look normal again because I couldn't bear the idea of sympathy.

That's enough for now. You don't want to hurt your head.

I put the sticky brush away and disposed of the used sheets. Dried my face and put my hat back on to prepare for another day of fevers and antibiotics.