Round four loomed and I was keen to get on with it in order to have time to recover and get organised for Christmas. In the event I was deferred for a week. Not because of my white count which has been holding up fine with the trusty injections I do. No this time its the platelets. And nothing can be done about them other than to wait. If they get really low they will do a blood transfusion but mine are not that low. Just too low for the next round of zapping. It’s frustrating because I really want to have time to recover enough to get through Christmas with some degree of enjoyment. Now I need to start panic buying to ensure I’ve got everything sorted before I get zapped because the timings will be tight.
As with previous rounds I experienced 4-5 days of vomiting, followed by a week or so of nausea and gradually it wore off to be just the trusty tiredness. It is rather like child birth in that once the worst is past you sort of forget how nasty it feels for the week or so. And I’m feeling lucky so far. I am reluctant to commit this to print lest it prove to be the kiss of death, much like uttering the dreaded words, “the M25’s running smoothly today!” only to hit a five mile tailback round the next bend, but so far I would say I’ve got off fairly lightly on the side effects. The main worry they have is infections, because the immune system becomes so compromised. I have only had one infection to date, after round two. It was rather uneventful. I was feeling pretty dodgy one evening, but barely more so than I often now feel. My temperature, which I’m supposed to take daily but never remember to was a little high but not glamorously so. I took some paracetamol and resumed moaning. After a while I checked again and my temperature was stubbornly remaining above the 37.5 at which point I am supposed to call the acute Oncology help line. It was getting late and I was tired and didn’t want to bother, I just wanted to go to bed but David insisted I call and the Oncology team insisted I go in to be checked over.
Brilliant, it was getting on for 11pm and we had to schlep out to the hospital. I was convinced our thermometer was dodgy. We had invested in a digital ear thermometer when I was told I’d have to keep a close eye on my temperature the previous year. We’d managed all these years before, through the child raising days on a strip thermometer which basically didn’t budge from the orange reading which seemed to be a temperature so low, you’d barely ever been alive, through to the high green which was enough to get the kids a day off school but seemed to me to be within the normal human range. I believe if it went higher, that meant a genuine fever but in 19 years we never saw that happen. Which I suppose is good thing really but did cast a bit of doubt on its efficacy.
When we reached the hospital it was all pretty dark, not unreasonable for nearly midnight but we couldn’t find a way in as the instructions we’d been given led us to a very locked door. Eventually we found a way in and by this time I was desperate to go to bed. I assumed they check my temperature and send me home but in fact their hopefully properly working, NHS supplied thermometer was in total agreement with our dodgy one and my temperature was indeed too high. This meant I’d have to stay at least for the night and be given antibiotics. I’d already made myself comfy in the bed ready to nod off for the night but you can’t get away without a fair bit of prodding and poking and of course, they needed to get a canular in me! But I felt safe and cared for so I shouldn’t grumble.
By the next day I was feeling much better already and was thinking I may be let out. But it transpired I’d need to be on the anti-biotics for a while yet and they’d be keeping me in for another night. I settled in and prepared for the stay, I do like the hospital beds with the adjustable heads and legs. Hours of fun can be had contorting yourself until you get to the perfect position, at which point inevitably someone comes with a cup of tea and you have to get back to sitting. Ideally it would have a memory button like I gather some people’s cars do to ping you back to your favourite place but I can see the funding for enough staff should probably be a priority.
During my previous stay at the N&N I had had some grievances with the food so I wasn’t overly hopeful on that front. But to my surprise, lunch, when it came, was a rather pleasant sausages with mash, veg and gravy. I’d just tucked into one sausage when a nurse arrived to give me my anti-biotics. Rather than using the drip she said she’d simply inject them which she duly did. And literally, as the antibiotics started to go in, so my lunch started to spew out. I did my best to catch this not even partly digested lunch in my napkin as the nurse scrabbled for a cardboard bowl. I actually think I did pretty well in the circumstances though not well enough as my bedding had to be changed. I did feel a pang of regret as my second sausage was whisked away, along with the chocolate mousse dessert. I wondered if it would wrong of me to ask them to leave it but decided it was probably best not to. As is so often the case my appetite, despite the sudden, violent eruption remained undiminished but I didn’t want to take the piss. Following this incident, my antibiotics were all administered slowly, via the drip.
Other than that brief flirtation with infection I have remained, thankfully, mostly side-effect free. I have a terrible fear of getting mouth ulcers. I don’t know why but idea is particularly grim to me. I dislike the nausea and I’m not that keen on throwing up, though I am pretty good at it – see incident above! But I am surprised when, during the Christmas period, I develop a new and unexpected problem. I start to feel dizzy. Not the fun, whoops I may have had a tad too much prosecco type dizzy, but a more disorientating sensation where I have to hold on to something when I stand up I don’t like it and though I can cope with it it’s very restrictive. I have another blood test but that all seems fine. Some days seem a little better but broadly it doesn’t seem to be going away. So I make the mistake of trawling through the details of my various chemo drugs for any possible answers.
Pandoras box, how I loved that story when I was growing up. But it’s what I fear I’ve opened when I come to the rare but listed side effect of nerve damage. Basically I am shitting myself. I call my specialist nurse for help. Unfortunately she’s not there, away sick. Her colleague, who is at pains to say she is not a brain specialist, can’t give me much information. I ask her whether it will wear off as the chemo wears off? She hesitates and explains not all side-effects are time limited. Wtf! I ask her if she can ask Dr P? She says she’s away or she would. I can’t describe what I felt. Most things are pretty easy to bear if they are, to use the nurse’s phrase, time limited. Otherwise, not so much. The nurse had suggested I get my blood pressure and my ears checked so I make an appointment to see a nurse at the GP surgery.
To my surprise, as I wait to get called by the nurse, Dr D. appears. It seems he is taking the appointment and he checks me thoroughly, blood pressure sitting and standing, ears, discussion of symptoms etc. As ever he is a reassuring presence. He explains that if it were nerve damage it would be unlikely to feel better at some times. My bloods were a bit low but have been recovering. Dr D. thinks it more likely to be an ear infection. If symptoms continue I have some exercises to help. I am incredibly relieved to hear this. And, as is so often the way, over the next couple of days, the dizziness recedes and I start to feel fine again, ready for the fifth round.