Fear

Fear.

It comes in many forms. I won't bore you by listing them, we all know what they are. We've all experienced them at various times in our life. Instead, I will share some of mine and how they have manifested over the last few months.

Fear of vomiting.

Anyone who knows me, knows that I have had a life time phobia of this. Seeing it, doing it, hearing it, the possibility of doing it. It has taken over more of my life than I care to think about. Naturally, when I was told I would be getting chemotherapy, this was a huge concern of mine. The kind nurses assured me that there are so many anti nausea medications that they would do whatever was necessary to help my tummy. I didn't believe them but I did what I was told and took all of the strange tablets. Something I would never normally do without a fight.

Cycle one was the most difficult. I wasn't eating because of the shock and fear of vomiting and just general lack of appetite. I quickly found out that the more I starved myself, the sicker I felt as there was nothing to absorb the medicine. I came very close to vomiting on more than one occasion and had to just stop what I was doing and remain motionless until it passed. After that, I knew I had to eat before treatment to avoid this happening again.

I consider myself very lucky to have escaped this side effect. Even as I type this, I can hear someone loudly vomiting a few beds away. I feel immense sympathy for them but at the same time I get an instant warmth in my tummy and stop breathing every time I hear it. The patients change and still, night after night, I awake to the echoed sound of someone violently vomiting. If I thought that all of this exposure would cure my phobia, I was mistaken. All it has done is contribute to my constant state of anxiety.

Fear of the unknown.

The more time I spend in here, the more I worry about everyone I love. I tell myself I'm strong enough to handle this if they are all safe. If I have the people who are most important to me, I can do this. I can stay positive and put up with the endless demeaning punishments my body has had to endure. There's a reason why people don't talk about what happens during the few weeks after your chemo has been administered. I believe most people couldn't look you in the eye if they knew what your body had been through.

As I lie in my isolated bed, listening to the hospital noises and unable to sleep, my mind starts to wander. 'The floor in the kitchen is really slippery.. what if someone spills water on it and slips and falls but I'm not there to help them'. Another popular one is 'What if they're so stressed about me that they make themselves really sick and I'm partly responsible for that'.

All I ever want to do is look after the people I care about and be self reliant. In this ward, I am trapped and unable to help anyone. When I get to a certain stage of sickness, I am not allowed walk through the doors of the ward into the rest of the hospital because the air isn't filtered and I will catch something but have no defences against it. So I lie in bed, night after night, worrying about everything that could possibly happen to those I love because they are stressed and tired.

Fear of death.

We all have this fear at some stage or another. Especially with endless famous people dying of cancer at relatively young ages. We fear losing someone we love. We fear what's on the other side. Lately, I find I fear this more than most things. From the moment I got my diagnoses, death has been a frightening reality. I don't want to die. Not for a long time.

I try not to dwell on this topic for too long when it comes into my head. I allow myself the odd cry on the rare occasion I get any privacy in here. I do my best to think of all the positive things the doctors have told me and I think about everything I can do during my recovery time. I will have time for all my hobbies again, guilt free. Sadly, all it takes is one small thing to push me back to the dark side of my reality.

It could be my bedtime in the hospital. The cheery nurses are chatting away while checking me over, talking to me about everything and nothing. My general mood will be good and I'll be thinking about how much I can't wait to see everyone I know, when suddenly, I'll see another patient walking very slowly past my door. They could be very old or middle aged or somewhere in between. They are wearing pretty much what I am. Pyjamas and a soft hat to keep their head protected. The difference is, they have no hope in their faces anymore. I start to wonder how much they've been through and then I remember that I'm in the same High Dependency Unit as them and immediately I feel sorry for myself as well as them.

I know everyone has a different history of health, different genes, different variations, but there's something very sobering about seeing someone, older than me, suffering from the same disease, with absolutely no glint of hope in their eyes. It makes me terrified that I am going to be one of those young people you read about. 'She fought a brave fight'. No matter what I do, those words enter my head at least once a day.

Fear of not surviving a brave fight would have to be my current worst fear. I can only hope and try to convince myself that some day, many years from now, someone will write these words instead.

'Humiliated Cancer and lived the life she wanted'.  

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.

Allergy Testing

When something traumatic happens, people respond in different ways. Some cry, some get angry, others might go numb. Some people confront things head on while others bury their head in the sand. It's all normal. However, what do you do when you've gone through all the common responses already? You've sobbed all night and day, you've pretended it wasn't real. You've shouted at whatever it is you might pray to and cursed those who didn't stop it from happening. 

As a child, when I was afraid of something, I wrote stories and left them lying around for people to find. I'm going to attempt to do that now and hope that it has the same therapeutic effect. Maybe someone will read it, maybe they won't, but hopefully it will help with the trauma.

June 3rd - I went to a GP to get some blood tests for allergies. Having suffered months of extreme fatigue, sinus pain and general ill health, I prepared myself for a possible allergy to my cats or being told I couldn't eat potatoes anymore. A few weeks went by with no results so I hunted them down. The receptionist said 'Yep they're all fine', and hung up the phone. A few minutes later, the doctor rang my phone and told me that one group of my white blood cells - neutrophils - were a bit low. He said it was nothing to get excited about, but that I should repeat the test in a few weeks.

July 15th - I went back up for a repeat. The nurse told me that lots of people have low neutrophils with no reason behind it and it usually rights itself. I went home feeling very fatigued but continued with my day. The next day, the doctors number appeared on my phone. My stomach went warm and I felt faint. This was not good. They don't call you less than 24 hours later with good news. He told me that the neutrophils had dropped again and were now at what was considered 'moderate to severe'. 

'It's probably neutropenia!' he said. 'That would explain all your sinus infections and fatigue so I've referred you to a haematologist. As long as you feel well, then you've nothing to worry about!'.

.... As long as i feel well??? What's well? I think it's pretty obvious that I DON'T feel well.

I should mention that 6 years ago, a family member was diagnosed with Lymphoma, so this was the first concern that entered all of our heads. Thankfully, he fought like a beast and came out the other side of it, but the paranoia was there that it was now my turn. After a day of worrying myself to the point of insanity, I decided to take my results to the family GP for a second opinion. She said she had been seeing a lot of this recently and it usually rights itself by the time you get to a consultant. She told me to get plenty of sleep and try to heal my body with rest.

July 31st - I went to my appointment in the hospital with my sister. There was a long wait ahead so we tried to get settled. After a while, I was called into a scary room full of people with IV drips. I distracted myself with the thought of my brother walking into that room. Haematology would not be his favourite topic. I had more tests done and after another hour or two wait, I got called in to see the consultant.

He went through all my history of symptoms and ailments. He studied all the info I gave him and examined me for any unusual lumps or bumps. The term neutropenia came up again as did the sentence 'as long as you feel well'... I stopped him there and pointed out that I don't. That I'm exhausted and that it's the reason I'm here. Thankfully, the doctor listened to me and decided to book me in for a bone marrow biopsy to rule out anything sinister. He assured us "There's not really any pain involved, it's just a pulling sensation". It was hard not to laugh at him for almost sounding convincing.

August 5th - Just a pulling sensation.
It's very rare for me to cry from pain, especially in front of a stranger. The bone marrow biopsy with 'sedation' and 7 local anaesthetic injections was possibly the first time that I lost that much control of myself and shook crying while a consultant performed a bone marrow biopsy, then told me he would have to do it again on the other side of my spine as it didn't work. When he was finished this torturous procedure and I was still sobbing (so unlike me), he patched me up and sent me on my way. I walked out the door, gulping on sobs as I walked past everyone in the blood test room and on into the waiting room.

I wasn't expecting to see anyone there, so the sight of Paul waiting on me with a concerned smile on his face was the thing that pushed me over the edge. I pointed at the exit doors and once through, he pulled me into a quiet corner to let me cry it all out. I don't remember much of the journey home except for the pain shooting down my legs. My family were furious that the doctor had continued on with me in that state, clearly about to pass out from pain, but I suppose it had to be done. It's not like I was ever going to go back for a repeat.

August 6th - "We have some preliminary results for you, could you come in and see us tomorrow first thing?"

I knew it.... I knew it would be me.

August 7th - Up until the moment I heard the words, the tears were just waiting to come out. What if he tells me and I throw up everywhere?? I sat with my Mam and Paul, staring through this man who had butchered me two days previous. He thought he was successfully hiding the bad news then made one small but critical move. In the middle of talking about my test results, he stopped and in a completely different tone said - 'I'm sorry, I never introduced myself to your family'. That's when I knew it. I am going to lose my hair.

I was strangely calm when he told me. It's like I already knew. The pain in my spine the last few weeks was something I had never felt before. Not muscle or joint or disc pain.. this was different. This was bone pain. And that strange bloated feeling in my stomach the last three weeks. That was no normal reaction to gluten. I felt it. My instinct told me I was sick.

The strange thing was, we were all expecting to hear Lymphoma. But he didn't say that. Instead he said - Leukaemia. Aggressive. We need to take you in straight away and keep you in. I need to see if I can get you a bed today or tomorrow at the latest. 

Tomorrow at the latest???? How sick am I?????

My Mam told him it was my birthday on Tuesday and could we at least wait 'til then? He absolutely refused. It was then that I started to really feel just how unwell I am.

I'll stop this blog here for now. That's enough for anyone to read at once. The next time I feel well enough, I will write about the first few nights in a High Dependency Unit of a hospital.

The moral of the story is, if you know in your gut that you don't feel well, don't let doctors dismiss you. Make someone listen.