Saturday 24th March – Chemo #4, a bit of a kerfuffle.
Well it has been a long 2 weeks since I last wrote. I think it’s safe to say that the T part of my FEC-T chemo regime, is T for Twat (sorry mum, Alyson, granny, anyone else offended by the appalling language.)
I’ll start with my last meal before chemo, but this could be a long one so grab a cuppa, or a pillow just in case you start snoozing while you’re reading. My last meal before chemo number 4 wasn’t quite the occasion that they have been previously. Ally was flying so was home late (I’d forced my dad to come along to my oncologist appointment with me earlier in the day, not that the oncologist showed up, again. I’ve now only seen him once since my treatment started,. His replacement was a lovely nurse who tried his best to answer my questions, but it’s not quite the same as speaking directly with the person who is responsible for your all-consuming cancer treatment.) So, it was a case of putting Filly to bed and grabbing something quickly out of the fridge. I made peanut veggie bowls, which sound a bit odd but are a staple easy supper in our house. We have baked sweet potato wedges, with rice wine vinegar marinated cucumber, stir fried beansprouts (and any random fridge drawer veggies), mashed avocado, lots of raw chilli and a peanut sauce drizzled all over the top which is made from whole nut butter with sesame oil, raw garlic and ginger, tamari, loosened with a touch of hot water to make a sticky sauce. There may have been a small amount of Ombar raw chocolate for pudding.
The following day, we were ready, but nervous for the 9 hour day ahead (we had packed lunches of falafel and salad, lots of fruit and a couple of vegan, sugar free biscuits I’d baked the day before with Filly.) We arrived at the hospital at 8am. I was settled into my usual chair and despite my veins still not being tip top they got my cannula in on the second attempt, I didn’t need the cold cap until the chemo part of my treatment, which would be the final drug of the day. I took my anti sickness meds and was given my steroids and put onto a slow saline drip to keep my IV open. Usually the drugs arrive pretty swiftly after our arrival but after an hour of waiting, one of the nurses told us that the pharmacist hadn’t received some prescriptions for chemo from the oncologists, mine being one of them. We then looked around at the other patients and noticed that no one had started their chemo yet. I really felt for the nurses and pharmacists, there was nothing they could do without the doctors’ orders. After being on the unit for almost 3 hours, my first drug, Herceptin, arrived. Unfortunately with its arrival came the news that because of the delays (I’m being polite and not ranting about oncologists here, just incase I have the wrong end of the story), I would not be able to have the other drugs on the same day and I would need to go back the next day. Other than not wanting to, returning the following day wouldn’t usually be a problem, but my mother in law, who was looking after Filly was going on holiday on Friday morning. After a couple of frantic calls to my parents, who had only just left our house on Wednesday eve, they quickly made their way back down the M5 to our house. Thankfully, the Herceptin infusion went without a hitch and I didn’t have a reaction. The nurses were monitoring all my vital signs regularly as Ally and I watched the horse racing on TV.
We trudged back on Friday morning, with another packed lunch and our Ipad so that we could watch the racing. The Pertuzumab and Docetaxel (the chemo) infusions both went well and again, I didn’t have a reaction. We were home for just after lunch time and we chatted to my parents for a short time before they headed back home. I felt quite good apart from having a bit of a cough and cold on the Friday afternoon and even into Saturday. I have now been told that this was probably due to the steroids masking some of the side effects.
My G-CSF injections, to stimulate my white blood cell production continued nightly as usual and as Ally went back to work on Monday morning, my parents arrived so that my dad could take over stabby duties. I cooked a butternut squash, sun-dried tomato, pine nut and sheep’s milk cheese pithivier for dinner on Monday and as I was cooking I felt myself becoming really flustered and hot and snappy (it didn’t perhaps help that Clarence had eaten the first one I’d made when I turned my back on him and Hartley for a second.)
I went to bed early to save my parents from my short temper and I was feeling really out of sorts. My brain was really foggy and I was struggling to focus on anything. I took a couple of paracetamol and thought I could sleep it off. On Tuesday morning I was feeling like I was walking around in a grey cloud. I thought it just must be fatigue and side effects so I stubbornly ploughed on and made banana and raspberry pancakes for our breakfasts. After breakfast, my mum insisted that I went to bed and I passed out asleep for a couple of hours. The rest of Tuesday passed in a foggy blur, I can’t even tell you what we had to eat! On Wednesday I woke up and felt extremely hot, so I took my temperature and it was raised. I thought it must be my cold so again I took myself to bed to rest while my parents watched Filly and the boys. After telling Ally about my temperature he came home from work as he was concerned about me being on my own when my parents left, which they had to do on Wednesday afternoon. Wednesday again passed by in a blur, I was feeling quite awful now, my body was aching and my chest hurt from coughing, but all of my symptoms are possible side effects so we decided I should rest and see if that helped.
On Thursday my temperature had risen to 38 degrees, which is a non-negotiable ‘get yourself to hospital’ order for chemo patients. Thankfully we have lots of wonderful friends to call on and our dear friends, Mr and Mrs P, along with their children and dogs, were able to work from home and take care of Filly for us while we went to chemo A&E. (I cannot thank them enough and they won’t want me to thank them publicly, but knowing that Filly was safe and happy and so so well cared for was a huge weight off my mind. I know that everyone’s children are special but at the moment it’s really hard for me to leave her with other people, so they truly are amazing).
At the hospital, my vital stats were taken along with my blood (first time – hurrah!) and as well as my increase in temperature, and by now feeling utterly rotten, my heart rate was also over 110. This led to the doctors giving me an ECG as well as a series of chest X-rays (for which I had 2 lovely porters wheel me in a wheelchair to X-ray and back as I was struggling to walk too far or at all quickly.). Ideally the doctors recommended that I was to stay in hospital overnight to have IV antibiotics, as my blood results showed that I had an infection and they were also concerned about my high heart rate, but between us, Ally and I managed to convince the docs to let me go home with oral antibiotics and a promise to check my temperature through the night and to return to be re-tested the following morning. More frantic calls to my parents and they were back on the M6/M5 with their dogs on tow to watch Filly overnight and into the next day incase I needed to rush back to hospital overnight.
Surprisingly, I managed to sleep well. Despite feeling extremely anxious about everything, my body managed to switch off my brain until my alarm went off at 1.30 am, which was set because I have to take antibiotics every 8 hours regardless of the time (something that will continue for the next week.) I woke on Friday feeling the same. I’m always hoping that I’ll wake up and it will all be over, but as that wasn’t the case, we made our way back to hospital. My bloods were re-tested and the doctors were happy that the antibiotics should work, but they wouldn’t let me go home again until my heart rate would stabilise. I have dreadful ‘white-coat syndrome’ and was diagnosed with PTSD following my treatment at another hospital, so the doctors weren’t sure if my heart rate was a medical issue or it was stress. The only way for me to be discharged was to prove that I could get my pulse rate down. One of the nurses recommended that I listened to music so I plugged in my phone and listened to some Bizet. I closed my eyes and thought what is the one thing in the world that always relaxes me without fail; and it’s horse riding. So, sitting in my hospital bed, listening to my favourite opera, I did all of my most favourite rides with Blue. We went for miles. The next thing I knew, my doctor and nurse were stood over me giving me a thumbs up. I was allowed home because my heart rate had steadied.
I’m now writing this at home, with very strict instructions from Filly and Ally (and my parents over the phone) to rest, and so I am.
I want to add that while I’ve had a bit of a moan about my oncologist a couple of times, and alluded to some pretty poor treatment in another hospital, the care I’ve received from the nurses in the oncology unit during treatment and from the doctors and nurses I saw in the chemo A&E this week has been outstanding. They’ve been caring and really, really good at their jobs but also amusing and friendly and reassuring; they are wonderful.