Hi Andy,
Thanks so much for taking the time to share this, it’s so important. I hope you get out very soon. Pneumonia and unexpected hospital stays can be miserable, and missing a holiday is just gutting. I am crossing my fingers that somehow you are able to do something else instead this year – Canary Islands?? Or a nice UK weekend away to make up for it.
You’ve made me sit up a bit – I had pneumonia right after I was first diagnosed, and as it was so extreme I ended up in intensive care for one night (and it delayed my leg op which delayed starting treatment so it was all quite hairy as the myeloma was really eating me up at the time). I remember it being so extreme, and with a specific crackly noise in my chest, that I tend to think ‘Oh this definitely isn’t pneumonia’ if I feel a bit rubbish with a 37.5/ 38 temp, but you’re making me realise it’s much better to err on the side of caution.
Just to share an example of how NOT to be, I started CRD 10 days again, felt rubbish for 4 days, finally felt better on the Sunday…. but then shivery etc going to bed, really really tired, and found I had a 37.8 and 38 temp. Somehow I got confused and just followed the advice I had last time in remission, so I took paracetemol, kept checking temp, it didn’t go over 38 and dropped after a couple of hours. I had a slightly dodgy cramping stomach the next couple of days but not proper diarrhoea. Temp tayed down for 6 hours, came up. Took parceteoml. Finally phoned the on call haemoatology (this was bank holiday monday) and they told me not to take the paracetemol as it masks the temp, but to wait for it to wear off and go to A&E if it got to 38 again… and then she said ‘technically 38.5’ which confused me. I now realise she should have just told me to go in anyway. Long story short, it was fine all day but 38 again at 10pm, but I couldn’t face going in so I went the next day, they gave me IV antibiotics, did lots of tests, no probs, and the temp was also fine the whole time I was there. They discharged me to get oral antibiotics and then come back if it was 38.5, probably a virus. By the time I’d got the drugs and was waiting for a taxi I suddenly felt all hot and crap, and temp was 38.1. So I just walked straight back round and ended up staying not just Tuesday night but all the way till Friday 6pm. Bit crap as I was stuck out on a side room on another ward, and my main team really busy so I spent the whole time thinking I was just about to go home, only to have someone very junior eventually turn up and tell me i was staying another night, and another night. Still, much better to err on the side of caution, I realise. My neutrophils dropped and a couple of slightly weird blood tests so they just wanted to keep an eye on me. But I’m back on the chemo again as of today, for Week 2.
Things I’ve learnt (might be useful for people in similar situations to me – I live by myself and, er, other than the myeloma am generally in good health so always feels a bit weird going to A&E as they tell me how well I look!)
– don’t question it, don’t think about it too much or ignore it, go straight to A&E and do not pass go. On chemo you don’t have to wait, they take you in immediately so it’s really no major thing (and Uber is very effective for me in this situation, much as I hate the company)
– have a bag already packed for hospital with clothes, snacks, phone charger, books, overnight stuff etc, so that I don’t put it off because I feel too tired to get organised and just hope it’ll go away! My temp always seems to rise at night and I always think it’d be better for me to stay in my own bed, but at the end of the day these things can get serious quickly so you just have to be sensible and go
– I’ve set up a Whatsapp group with a few of my nearby/supportive/flexible friends, so that I can just send one message and someone will be free to come and hang out. This time I didn’t think I needed visitors because I thought I was about to leave the whole time… But I’ve realised you just never know, and company is always nice.
Bit of a long message…. good old Dex day today… hope it’s useful for someone out there!
Helen
andyg 8 years, 11 months ago.
