The week after chemotherapy turned out to be what I hope was the worst week of my life. It was nothing short of horrendous. On Tuesday, I felt a bit fuzzy in the head, similar to how I had felt after arriving home from chemo on Monday. I was able to go to my daughter’s school fun run which I was happy about. I wouldn’t have been able to go to that if I didn’t have cancer! I didn’t feel 100% but things weren’t too bad. After the fun run I went to the bank before returning home. I ate a normal dinner that night and went to bed. So far, so good.
On Wednesday the fatigue was starting to hit. I was trying to carry on as normal so I dragged myself along to school with my daughter and did reading with her class. My mum had come over to my house to help out with things so I didn’t also have to take my son with me which made things easier. After reading, I went home and had a lie down in bed as I was feeling tired. I then had to see my GP to get a referral for a thyroid ultrasound, as something had shown up in my thyroid on the PET scan. He said I looked well and asked how I was coping emotionally. I said I was fine but several people had already suggested I get a referral to a psychologist just to talk about things. I think it is something that should happen automatically when you are diagnosed with cancer. After the GP visit, I went home and went back to bed. I was starting to lose my appetite and get a bit of diarrhoea but overall I didn’t think things were going too badly. I think my mum picked my daughter up from school while I stayed in bed. She had her acting class that night and she wanted me to take her. I dropped her off there and went to the supermarket on the way home and then went back to bed yet again. I was starting to feel a bit cold and shivery and had pain across the back of my neck and shoulders. I checked my temperature and it was fine. I didn’t think I would be neutropaenic (you’ll hear a lot about this later so I won’t go into detail now) that soon after chemotherapy but it was important to check my temperature if I felt unwell. I ate a small dinner in bed that night and went to sleep early, hoping to feel better the next day.
On Thursday, I woke still feeling quite drained. I had a bit of nausea so thought I’d take a maxolon tablet to knock it on the head. I had been given two stronger tablets for nausea to take on Tuesday and Wednesday and then had maxolon to take for the following days if I needed it. As the morning went on, I started feeling worse and worse. It’s hard to describe how I felt. I was just completely drained, had no appetite and was struggling to even drink anything. I think I managed half a sustagen (which came from one of my cancer show bags) for breakfast. The diarrhoea was worse and I just really felt disgusting. I wasn’t answering my phone and didn’t even have the energy to read text messages or emails; a sure sign I was unwell. My friend Ev had planned to visit me that day but I had to let him know I wasn’t up to it. The nurses had told me I should drink two to three litres of water a day after chemo. I would have been lucky to have drank one litre since Monday so I thought I might be dehydrated. I was trying to sleep to pass the time quicker and hoped I would feel better when I woke up but I don’t really think I slept much.
I was quite unpleasantly surprised by how bad I felt and just could not believe my haematologist had suggested I might be able to work. I think there was also probably a bit of fear, as being the first round of chemo, I had no idea how long I was going to feel this bad for. The nurses had told me days 3-5 after chemo would be the worst and Thursday was day 4. I was starting to think that I might not be able to do this for 6 months. People had told me I was tough, ‘if anyone can get through this, you can’, but I was not feeling at all tough then. I was thinking I’d be better off dying rather than have my family see me so sick for 6 months and then I might die at the end of it anyway. I know that sounds a bit dramatic, but it really was horrid and I’m not sure my description has done justice to how bad I felt.
One of the nurses had said to me on Monday that if I was really dehydrated and struggling, I could go into the day infusion ward (where I have chemo) for some intravenous fluids and then go home. My haematologist had given me the impression that chemo would be pretty easy but I felt horrendous and knew I hadn’t had much to drink. I thought I must be dehydrated. I remembered a time a few years ago when I went to New Zealand for a holiday to visit some friends. I contracted Giardia and was sick the whole time. I was still sick on the last night there and the prospect of a three hour drive to the airport and a four hour flight home with an almost two year old was daunting. I went to the local hospital in the middle of the night and was given a few litres of intravenous fluids. By morning, I was almost skipping out of the hospital. The rehydration made a huge difference to how I felt and the recovery was quick.
I’m not the sort of person who goes to hospital unless I really have to. I could tell you many stories about people who have presented to accident and emergency departments, who really shouldn’t have, and I never wanted to be one of them. I once avoided hospital because I was studying for exams. I was so sick during the last exam that I went straight across the road to hospital after the exam. I got put in a wheelchair and was admitted with pneumonia. In the midst of feeling so unwell on the Thursday, I was thinking about how quickly I’d improved after some intravenous fluids in New Zealand. Although I really could not be bothered, I thought maybe I should just pop into hospital for some intravenous fluids and then I’d be able to drink more when I felt better. I’d either spoken to Jenni or texted her during the day so she knew I was feeling unwell. In the afternoon I told her I thought I might need to go to hospital for some intravenous fluids. I was looking for a quick fix to get me back on track. She told me to ring and speak to the nurses (that’s the protocol; if you’re feeling unwell or have any questions, you call the nurses and if they can’t help you they’ll speak to your doctor). I told her I didn’t even have the energy to make the phone call so she said she would come over.
When Jenni came over and saw me, I think she was a bit shocked by how unwell I was. I recall her saying “this chemo has hit you like a freight train”, and it certainly had. She called the chemo ward and spoke to the nurses who in turn spoke to my doctor. The message from him was that I just needed to drink more. We decided he was trying to teach me a lesson, that I had to be more vigilant with my fluid intake and there would be no quick fixes. I did think that was reasonable as they wouldn’t want me to keep going in for intravenous fluids just because I couldn’t be bothered drinking. My mum and Jenni went to the supermarket and stocked up on gatorade, vitamin water, lucozade etc, anything that would be easier to drink than water. I forced myself to drink a bottle under their close watch and by early evening I finally made it out of bed and onto the couch.
I was definitely starting to feel better by the evening and started returning text messages, telling people I thought I had turned the corner and that I hoped I’d be much better the next day. I managed half a cup of soup for tea and read a story to my daughter when she went to bed. Something so simple but it was a bit of an effort. I hated that I’d already spent so much time in bed and that I was relying on other people to do simple things like drop her off at school and pick her up. She wanted me to do it but I think she understood that I just couldn’t. The next day was day 5 and I hoped I was over the worst of it. I went back to bed early hoping to be almost normal when I woke.
I woke to several text messages on Friday and I responded to them, so that was a good sign. I said I was feeling better than yesterday and hoped to stay that way. I had a bit of nausea and still had constant pain across my neck and shoulders so I asked my husband to get me a couple of panadol and a maxolon before he left for work. He suggested I have an endone for my neck pain so I could ‘float through the day’ but I didn’t want one as I didn’t like the way the fentanyl made me feel before the lymph node biopsy (they are similar drugs). He got me two panadol and two maxolon which I took and stayed in bed.
A short while later, I got up and was even thinking about having breakfast when I started feeling really unwell. Again, it is hard to describe how I felt but if I thought the day before was bad, it was nothing compared to the way I felt then. My friend Simone had been asking me for a score out of 10 each day for how I felt. The scores had been getting progressively lower and that day was a 1, possibly even a zero! I felt like my eyes were rolling around in my head, my head was spinning, I couldn’t talk properly, I was breathing heavily, I couldn’t eat or drink. I just described it as disgusting! I contemplated taking a photo of myself and sending it to everyone to show them how the ‘good cancer’ was treating me. I managed to text my husband and asked him to come home as I really didn’t think my mum needed to see me the way I was. He called me and I asked him if he’d slipped me an endone because I thought that might explain the way I was feeling. He couldn’t understand my slurred speech so he called my mum and she told him what I had said. He said he hadn’t given me an endone but the maxolon tablets were out of date so he was a bit worried about that. The maxolon was only a few months out of date and I knew that wouldn’t cause any problems. I just thought I must be really, really dehydrated but it wasn’t making complete sense to me as I had improved the night before and then gone downhill again in the morning.
My mum then rang Jenni and she came over. She must have been even more shocked than the day before and it can’t have been nice for anyone to see me then. I was telling them that I couldn’t do this for 6 months. I meant it and I think they understood. At that point I was thinking about all the people who have a cancer that doesn’t have a good prognosis; if I made it through this horrendous treatment, there was a good chance I’d be ‘cured’. There must be people who go through this only to be told at the end, ‘sorry, the chemo hasn’t worked’. Unthinkable! Jenni rang Lisey, who again had lots of good advice. She had also ended up back in hospital with dehydration but not not after her first round of chemo!
I think Jenni decided then and there that I was going back to hospital. She rang the chemo nurses and told them how bad I was. The nurses couldn’t give her the OK to bring me in to hospital until they spoke to my doctor but she made it clear that she was bringing me in. She was a bit concerned about how I would get into the car and wondered if she would need to call her husband (I can call him that, rather than her partner, since they got married one month earlier!) or even if she would need to call an ambulance. I slowly sipped away at a gatorade while we waited for the return phone call. Finally, it came back after about an hour. I was being admitted to hospital and would be there for one or two nights.
I dragged myself out of bed, put some clothes on and walked feebly to the car. We were only about 10 minutes from the hospital so the nurses were surprised when we arrived there so quickly. I was told a bed wasn’t ready on the ward but to go to the day infusion area (where I have chemo) and they would get treatment underway there. I sat in a chair and some observations were taken. I remember my blood pressure being 120 systolic (that’s the top number) which is high for me and the nurse commented that she thought it would be lower if I was dehydrated. I was then told a bed was in fact available on the ward so I was escorted there. On the way there the nurse mentioned that perhaps the dose of chemo might need to be reduced and perhaps my haematologist had ‘hit me hard’ because I’m young. I asked if the first round was always the hardest, hoping the answer would be yes and she said it wasn’t always and that some people cruise along in the beginning and then ‘lose the plot’ towards the end. I wondered if this was considered losing the plot and if I had more of it to look forward to.
Once I was in the bed in the ward, which was about 1 pm, I started feeling a bit better and was then embarrassed about being in hospital. I was being admitted with dehydration but I started feeling better without any treatment, so it didn’t make sense. It was about another hour before a nurse came to see me to insert an intravenous cannula and commence intravenous fluids. The cannula was put in the front of my elbow so every time I bent my arm the machine beeped and a nurse had to come in. I was given one litre of fluid over a ridiculously slow rate of 12 hours. If I was my own doctor, I would have pumped that fluid in over one or two hours. I was beginning to wonder if this was being done on purpose; putting the cannula in an annoying place, ensuring I didn’t get any sleep with that constant bloody beeping, fluids so slow it could not have assisted in rehydration. Let’s make this hospital admission as painful as possible so she never comes back! The nurses were lovely. One of them got some dry biscuits and lemonade for me and after not eating breakfast or lunch, I managed to eat and drink that, and I even managed a bit of quiche for tea. Routine blood tests were done and the results were all normal. I was actually hoping they would show that my bone marrow had been completely wiped out which might mean that I had been given too much chemo and would explain why I felt so terrible. Not so.
I was now convinced that I wasn’t dehydrated and it would appear I hadn’t been hit with a huge dose of chemo. I wondered if I’d had a reaction to maxolon, which seemed odd as I had taken it so many times in the past (doctors always have it on hand to self-treat hangovers) with no problems. Or maybe this was just how it was going to be for the next 6 months. This was how chemo was going to affect me. Many people were texting me to see how I was and I was not making any secret of the fact that I did not think I could endure another 11 rounds of chemotherapy, regardless of the good prognosis at the end of it. I had a sleepless night thanks to a hard bed, constant beeping every time I moved and unrelenting neck and shoulder pain requiring pain killers every time I was allowed to take them. I even asked the nurses to speed up the infusion rate of the intravenous fluid to just get it through but they didn’t oblige. I should have just ‘accidentally’ done it myself.
I woke on Saturday morning feeling much better, not 100%, but much better. I had a small breakfast and showered. I knew I would be going home that day as there was no reason to keep me in, so I packed my things ready to go. My husband and children came in mid morning to take me home but I was told I’d have to wait for my doctor to come in and see me. After a while, the one year old was getting restless so my husband took him to the car and my daughter waited with me and made a card from the paper place mat on my breakfast tray.
My doctor arrived and the first thing he said was, “It’s not supposed to be this hard”, to which I replied, “I know, you said it would be easy?” He said, “Oh, I never said it would be easy.” That is true, he had never said it would be easy, but that is the impression I got from him; well not easy, but not too difficult. He asked what had been happening and I told him about the past few days. I told him I had asked my husband if he had slipped me an endone and he said he had wondered if I had taken anything because what he had been told about how I was did not seem like a normal response to chemotherapy. I then asked him if he thought it might have been a reaction to maxolon as I’d taken it on Thursday and Friday, and these were the worst days, and I seemed to have improved without any treatment. He said he had seen a few strange reactions to maxolon and that’s probably what it was. It certainly made the most sense. He also agreed that the maxolon being out of date was not the reason for the reaction. He had more time on this visit, not that consultations in his rooms were rushed, but he obviously didn’t have the pressure of waiting patients, so he sat down and talked a bit. No, no, still no sympathy but he asked about my job and talked about himself a bit, which I liked. He also asked me if I had tried to go back to work that week! Seriously! I can honestly say that the thought did not even cross my mind!
So, it was all a reaction to maxolon. My husband was relieved that it wasn’t the maxolon being out of date that caused the problem and also gave himself a pat on the back for giving me two tablets, instead of one, as the two tablets gave me a reaction severe enough to land me in hospital. Otherwise, he thought, we would never have suspected the maxolon and I would have kept taking it and kept feeling like crap. Hmmm, he might have been right but I didn’t thank him.
I left hospital very relieved that it probably wasn’t the chemotherapy that had made me so sick, so there was a good chance the next rounds would not be so brutal. I had the card my daughter made, safely tucked away in my handbag and I headed home, hoping for a better week if I stayed away from maxolon.
For those of you who don’t have children in prep, I will translate for you:
I hope you will get better soon and I hope you are OK.
Love from M.
And I hope your cancer gets better. I love you
Well, I guess I’ll just have to suck it up and face the next ELEVEN rounds of chemo!