My first infection and the first time in Intensive Care
I had been told that infections could be life-threatening from the outset, but to be in that situation for the first time…
I had been told that infections could be life-threatening from the outset, but to be in that situation for the first time…
I had completed my first month of chemotherapy (Induction - Part 1) and aside from the blood clot and some trial and error with anti-sickness medication, it had gone ahead without too much incident. Nathan had taken the first couple of months off work to support me and I was already starting to create new habits and routines. I had visited the Maggie’s Centre on the hospital site, I’d had a lot of conversations with friends and other support available and I was feeling ready to start the most intensive part of my treatment yet.
I’d had my bone marrow aspiration and the leukemia was in remission so that was a boost at the end of the first part of induction therapy. Things were going well.
The next cycle was Induction -- Part 2 and consisted of daily chemotherapy (cytarabine) with a fortnightly PEG-Asparaginase and Cyclophosphamide and a weekly intrathecal. I was prepared this was going to be a tough phase but more so due to the volume of treatment and having to get up every day knowing there was more to come, I had been neutropenic before but not for long periods of time, so didn’t really understand the impact that would have.
The first couple of weeks went by ok, I was tired but just took it relatively easy. As I got into the start of the third week of this phase, I was feeling quite tired and emotional. I needed blood during the second week and felt wiped out on those longer days. After another valuable conversation with my specialist nurse, as well as the usual motivational stuff and sharing her experience, she also said she was surprised I had made it this far without an infection and reminded me that it was likely to happen and to be aware, particularly during this phase. I had been neutropenic since week 2, so I was high risk.
She was right as always and by the end of week 3 on Sunday 29 November, my temperature hit 38.2. I had checked my temperature more often than usual that day because I did feel a bit shivery and my stomach had been cramping and sure enough my thermometer confirmed it.
When I ‘phoned the ward, they wanted me in straight away given the fact that I was neutropenic. When I got to hospital, they took blood directly from my vein, rather than the line and were able to get cultures to identify the source of the infection, which turns out was my PICC line. I was admitted for a course of antibiotics and the next day the line was whipped out. I was amazed at how easy it came out, if you blinked, you would miss it! Due to the key stage of my treatment, I had to continue my chemotherapy and this was done over the next five days as an inpatient, finishing with an intrathecal on Tuesday 8 December, only two days later than planned. It was now that I understood more about infection risks and how this increases the longer you are neutropenic and I understood about CRP indicators from your full blood count for infection levels, which I hadn’t had any exposure to prior to now.
Everything seemed to be ok once the line was out, until a few days later those CRP indicators started to rise again and it was back to the drawing board to find out what was wrong. This was the first time I'd been in hospital since my diagnosis and I learned that a doctor would come to see you every morning to monitor and discuss your symptoms to determine your health. I was running high temperatures again and the doctors were having to look at all possible causes because neutropenia can prevent those warning signs from your body when something is wrong. This was also the first time I'd been introduced to GCSF (Filgrastim) injections. These injections are a stimulant to encourage your bone marrow to produce white blood cells. I'd been given them since I was admitted but with white cells down to zero and being within 12 days of my last chemo, my bone marrow just wasn't ready to play ball.
It was a strange feeling in the hospital during December, everyone wanted to go home to enjoy the build up to the festive season and be with their families, but the nurses were trying hard to make it as good as they could, by staying back late to put up Christmas decorations and playing Christmas songs. It was making the most of a difficult situation for us. I was still convinced at this point that I would make it home for Santa Claus.
Investigations continued and even though the pain in my stomach had settled down since I'd arrived on the ward, I was sent for a CT scan on my abdomen as all other tests had proved fruitless. Within hours of the scan, I learned that I had appendicitis and I needed surgery to remove my appendix. That day, the surgeon came to see me and said that if I was a healthy person off the street, the operation would be done immediately, but as I had no white blood cells, it was going to be a high risk procedure. He also explained that my bowel could also be affected and it’s not until they got in there, would they know if some of that may need to be removed. That afternoon all feels like a bit of a blur thinking back, but they weighed up the risks and it was necessary to go ahead with the operation. I felt nervous about it all but understood the need to operate and once again put my faith in the medical professionals.
It was Thursday 17 December and the operation went well (this is from what I was told because I don’t really remember any of the subsequent conversations with the doctors). However, due to my flatlined immune system, this caused complications and I spent the following 12 days in intensive care as my body reacted to the surgery. This was a tough period for me and my family. For me it was the uncertainty of my experiences in ICU, the memories and my behaviour. I had never been in this situation before and I didn't understand what was going on, I felt uncomfortable and unsafe and it was hard to make sense of it all. For my family it was watching me go through it without knowing whether I would pull through. Due to the nature of ICU, the doctors can’t be certain about what will happen and aren’t able to give any guarantees or reassurances to your loved ones, so when my mam and Nathan asked if I would pull through, they couldn’t honestly say. That coupled with me needing feeding tubes, oxygen and strong medication to keep me stable, was hard for them to watch.
Due to the infection levels, sedation and morphine, my brain was playing all kinds of tricks on me, I was convinced that I went to new places, I was paranoid that some of the nurses didn’t like me, that machines were coming alive at night, I thought I could see people I knew and that strangers were on my bed, just to name a few. I was also hell bent on pulling out cannulas, taking off my oxygen mask, heart rate monitor and any other wires that I didn’t quite understand, which was stressful for me and the nurses trying to keep me safe. I couldn’t settle a lot of the time and had no clue what time of the day it was or where I was. The memories of that time feel like dreams, with vivid images and me creating my own reality of what was around me. One of my greatest fears is not being in control of my own mind so it was generally quite a harrowing experience. One of the recurring themes that I remember was that I was part of a gameshow, not dissimilar to Big Brother and the nurses were competing against each other. It wasn’t until after ICU that I understood a little bit more about why I was behaving in this way and appreciating that it was quite a normal reaction of someone in my state.
Before my infection, Nathan and I had planned a special Christmas dinner and I had been planning to ask my consultant if I could have an alcoholic drink to celebrate, however, Christmas day arrived and I was nil by mouth, with tubes feeding me and giving me fluid. The best I got was wet sponges to moisten my mouth. I was vaguely aware that it was Christmas day, but still in an alternate reality, imagining my own scenes and locations. I can’t imagine how tough it was for my mam, sister and Nathan spending Christmas day knowing that I was still so poorly, whilst at least I was protected by my hazy, lucid state.
I remember the day that I ‘woke up’ and realised that I knew where I was and had returned to reality. I know it sounds cheesy but it was one of the most exhilarating feelings to know you’re alive and I felt so happy and grateful.
It was 29 December and new year’s eve was approaching and I was moved to my home ward away from the ICU. I was now a fragile 49kg (my usual weight is 57kg) and feeling like I was learning to function for myself again, but still so happy to be of sound mind and out of the ICU. There was so much support for me to make my recovery, a physiotherapist, a dietician and occupational therapist to help me with my movement, to gain weight, promote healing of my wound and to help me with any support I would need when at home.
I had a line in my neck, a feeding tube down my throat, at least two cannulas in each arm and a urinary catheter. It felt great when these were all removed and I could start eating solid food and doing things for myself, although I was weak like a barely brewed cup of tea. I had a fear in those first few days that my body wouldn't just return to normal but I was relieved that it was really natural.
I was now aware of the gaping wound down my abdomen which looked like something from a horror film and I needed the staples removed and the larger holes packed. As it hadn't been a straightforward procedure, the surgeon had to make a large incision to remove the appendix and investigate the surrounding area. The pain was unbearable the first time the no-nonsense nurse cleaned it up and packed it, but I either hardened to it or the pain reduced the more times it was packed. The nurse reassured me that the pain was a good sign that there was no nerve damage. I suppose you have to take these wins!
A couple of days back on the ward and I needed to have another bone marrow aspiration to ensure the leukaemia was still in remission following completion of the second part of induction. It was Dr Evil who came to do it, but feeling a newfound strength and knowing this was not as bad as the biopsy, I just sucked it up and got it over and done with. At the time I thought, there isn’t possibly anything more you could throw at me that I’m not ready for now! I was actually thankful for the timing of my infection because the first two months of treatment are so important, I could’ve been at a much higher risk if this had happened any earlier in my treatment.
When my CRP indicators started to rise again, I was devastated, would this nightmare ever end? I had another CT scan and it turned out to be some small abscesses on my organs following the surgery and I was prescribed some antibiotics to treat them. I was in hospital for another couple of weeks and then I was allowed home on the weekend of Friday 15 January. This was on the basis that I checked in with the ward daily for blood pressure, temperature and heart rate tests.
As I had anticipated the period leading up to Christmas being difficult (little did I know what would actually happen!) I had been organised enough to buy Christmas presents for most of my family. That didn’t even cross their minds, but it meant that I had something to exchange - I had so many presents to open it was unreal on that Friday night. Nathan hadn’t opened any of his presents either, so we could do it together. When we did open our presents, I couldn’t believe how exhausting it was. I suppose being so much weaker and spending such a long time in a hospital bed had taken it’s toll. I was officially discharged from hospital on Monday 18 January and on Sunday 24 January we had the Christmas dinner we’d planned. It was delicious and I ate a canny plate full.
I hadn’t slept very well in hospital and I was worried that my time in ICU had permanently affected my sleep pattern and ability to relax. The occupational therapist gave me some relaxation techniques to try, which were great, but the first night in my own bed, I slept like a baby.
I was monitored weekly for the rest of the January, but I needed to get back on treatment because I'd had almost two months off. After a review with my consultant, my blood results were strong and I started my next cycle on 1 Feb. The only cause for concern was my abdomen wound, which would be affected by more treatment and could be an infection risk, but I was emotionally ready to get back on track and keen to crack on with the treatment.
With two months off treatment, I had a full head of hair back - a bit like a tennis ball, so I would have to lose it all again. It was quite refreshing to know how quickly it would come back when the chemo is over.
I find it hard to summarise my experience in ICU because it's unlike anything else you would usually experience. I was offered counselling to help me cope with the experience, which I didn't take up, although I do believe in the concept and benefit it can have. I felt at the time that I’d processed the experience and had talked about my experiences with almost anyone who would listen. I know that the support is there if I ever do want to take advantage of it.