Hello everyone and a happy new year to you all. I have ended 2024 and started 2025 rather differently than I anticipated. I have had a persistent lung infection for six months following a fall when I fractured five ribs last June. I have been in hospital several times and had numerous courses of antibiotics but the infection hasn’t fully cleared. I am now in an isolation room in my local hospital receiving intensive treatment to try and eradicate the bug once and for all. I have been placed in a ‘negative pressure’ room where the window deliberately doesn’t open and the two sets of doors must be kept closed at all times. It is unbearably hot - almost 80°F. I have a fan but it doesn’t help much. I suffer with claustrophobia which makes it very challenging. The thought of 14 days like this is very hard but I am trying to just take it one hour at a time. I know there will be others on this forum who have endured much worse and I was wondering if you have any tips as to how you managed to cope? Thank you so much. Warm wishes Willow x
Hi @Willow
I am so sorry to hear your update. How frightening for you.
My daughter Danae was in one of those rooms but I was allowed to go in and spend time with her (although I had to wash hands, put on gloves, apron and mask every time I left/returned to room.)
Her room wasn’t too hot - maybe ask the nursing team if they can check thermostat and adjust. Perhaps you could also ask for extra small towels and wet them to place against your forehead/skin? We used to do this and Danae said it was so refreshing (I guess baby wipes could also do the same job?)
Hopefully you will not need to spend too long in this room. I remember your special gift of writing poetry. Maybe this time could be used to come up with some more beautiful words?
Do be kind to yourself in this time Willow. Keep us posted as to how you get on.
Sending positive thoughts
Sarah
Goodness Willow. That sounds challenging for you. I agree with SarahMum to ask if that temperature is really necessary. I hope you have distractions with you to take your mind off the feeling of claustrophobia. I am thinking reading materials, sketch books, diary perhaps? Headphones for quietening music. I used sounds of the sea when I was feeling under pressure. Its anything that stops you concentrating on the environment you are in. good luck.
Thank you @Spimula and @SarahMum for taking the time to respond and for your kind messages. Apparently nothing can be done about the temperature of the room. I don’t really understand why? I will learn to acclimatise I hope. One kind nurse who remembered me from before brought me an ice lolly from the fridge which was much appreciated in January!! Thank you for the good suggestions you have made. Very warm wishes! From Willow x
Hi @Willow.
Gosh, that all sounds really challenging and I’m sorry you ended the year in hospital.
I have everything crossed that this bug is zapped and that you are home really soon.
Perhaps give that nurse a wink and ask for another ice lolly.
You take really good care of yourself and keep us updated on how you are doing.
Sending lots and lots of love X
Good evening @Willow, I’m very sorry to hear of your difficulties at the end of 2024/beginning of 2025 and hope that you will quickly acclimatise to the temperature in your temporary accommodation unit! The one bright spot that immediately comes to my mind is that at least you aren’t having to pay for the additional heating!
I think the tips given by @SarahMum and @Spimula are excellent ones and may well help to “pass the time” although I think it would turn me in to a bottle of “toilet cleaner” and send me clean round the bend! Thank goodness for books and, these days, the internet.
I really do hope that your infection lung infection clears up quickly for you now.
@SarahMum, I hope that Danae is doing well and enjoying life once more and that you are able to “relax” a little more too.
As always, stay safe, take care, be kind to yourselves and keep on smiling.
Best wishes,
Jimbo165.
Oh @Willow what a challenging time for you especially with your claustrophobia.
In wonder if there is a chance of changing rooms at some point.
I am so glad that you have asked for suggestions on here and I hope others will help and I will also copy your post to the Blood Cancer UK nurses in case they have any ideas @BloodCancerUK_Nurses
I love @SarahMum’s idea of you turning the time into one of writing your words and perhaps saying how it really is to be you at the moment.
I wonder if video calls might break up your day occasionally?
Is it possible to store a supply of ice lollies somewhere?
I find concentration can be problem so light reading, puzzle books etc.
All those box sets you never get round to on your laptop catch up.
I have been reading Richard Osman’s 2nd book for ages and I am really enjoying it, but don’t ‘make’ time to read it.
Really utilise that fan and I got a beautiful manual old fashioned 1/2 moon fan for a tenner which I find really wonderful.
Take it 1/2 hr at a time and remember we are all there with you and for you.
Others have sent ‘warm’ wishes to you and I shall send hugs as well, please do keep posting. xxx
Hi @Willow
If it helps, I was poorly with tonsillitis & septic when I was diagnosed with leukemia. I was admitted in hospital for a month and a half in an isolation room as I was also given chemotherapy. Luckily, my partner & mum was able to take turns staying with me (with strict hygiene & PPE). But there are times where I was all alone.
I was having persistent fevers, dry mouth/tonsils, dry nostrils. So I asked the nurses if I can bring my humidifier, of which they allowed. I placed it right next to my bed & it was able to cool me down with moist air. It also made my room cooler. One of the nurses even commented the my room was nice & cold compared to the other rooms which were hot & roasting. I had a fan in my room, but it was only blowing dry cold air.
I also found having a ‘routine’ helped distract me when negative thoughts come in. I take my time brushing my teeth, eat my meals. I enjoy watching videos whilst I eat my meals. I also found that having a shower or even using cleansing wipes (on days where I struggled to get up) helped cool me down. I also swear by cooling sprays, not only they help cool down my skin, they’re also very relaxing.
I wish you all the best & hopefully, a fast recovery. X
Thank you so much @jenilayo for sharing your tips. I am so sorry to hear all you have been through. Warm wishes Willow x
Willow so sorry to hear that you are in hospital. The spray sounds like a good idea, I find a damp cloth on the back of my neck or forehead helps to cool me down. I know I would find that heat very challenging. If you knit or crochet that might help pass the time. My daughter likes diamond art painting maybe you could try that or some drawing. I find medications can affect my concentration so re reading a favourite book or listening to an audio book can be a distraction. I do hope you improve quickly and get released soon. Best wishes Liz59
Hi Willow, just wanted to add my support, not such a good start to the New Year for you, but it will pass, and i hope you will be all the better for this temporary challenge!
We’re all on this forum because we’re all living with some form of blood cancer, and thats what we’re doing, living, so we are all behind you, try to relax and it will soon be over and normal life can resume for you, keep in touch and i send you very best wishes for a better year. x
Thank you @Nichola75 for your kind message and understanding. Very best wishes, Willow x
Thank you so much @Tabby7L and @Liz59 for taking the time to reply and for your kind suggestions. Yes, we are all in this together!! Thank you everyone for your support. Very best wishes Willow x
Ah so sorry Willow to hear you are in hospital and in difficult situation there too - I can well appreciate how the heat must be for you -MPNs and heat don’t mix well at all do they let alone in the closed ward you are in - do keep us posted how you are getting on - it’s good some have been found that have also been in such a ward and given some good tips. Hope your IPad/tablet is assisting a bit - I use the online library app it’s handy as it has audio books too. I also use all the tv channel apps some have the old time shows too which can be nice. I am just thinking when fatigue is bad it’s nice to have things that don’t need so much concentration isn’t it. Anyway Willow thinking of you and keep letting us know how you are getting along. All the best
Oh @Willow!!! Poor you, I’m so sorry to read of that nasty infection not buzzing off yet! There’s nothing I can add to the lovely ideas already shared but I just wanted to say I’m thinking of you from over here. I hope the rest of your time passes uneventfully and swiftly.
Perhaps the last thing you’d ever want to do, and apologies if inappropriate, but could you take some time to meditate? Using some earplugs or headphones playing gentle music, wearing an eye mask, might that let your mind wander to more peaceful places? When I was in hospital after my heart attack I wished I had a way to tune inwards more, rather than hearing and seeing all the hospital electronics and other patients.
I bet this experience gives you rich material for your beautiful writing, but for now get well soon and please let us know how you’re doing when you have the energy.
Thank you so much @Jilly20 and @Duncan for your kind messages and good suggestions. Very best wishes Willow x
How are you coping today @Willow ?
Sending you love xx
Thanks for asking @Erica. I was given mixed news yesterday. First the good news - I might not be here 14 days, they will review it after a week. Not so good news - they will do their best to fully eradicate this bug but it might not be possible. How are you recovering from your fall on the kitchen floor? All this started with me when I slipped in the shower and broke five ribs. Continuing very warm wishes from Willow!x
Willow just wanted to send you a virtual hug. Mixed news indeed, hopefully they will have more positive news as regards the infection. From personal experience having had pneumonia 3 times, when they do release you and you start to feel better, take it easy as I learned the hard way it takes about three months to get fully back to yourself. As Erica always says be kind to yourself. Warm wishes Liz59
Thank you so much @Liz59 for the virtual hug and for your kindness and understanding. Wow! Having pneumonia three times is awful. I shall definitely take your advice. Very warm wishes, Willow x