Update

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Just thought I’d add my latest story. So I had my first Keytruda infusion then a week later noticed that although I’ve been a bit breathless for about three weeks it had got worse. Called the hotline to the Marsden and 12 days later I came home! They said I had a lung infection and tried two generic Antibiotics and finally microbiology said they found a bug and I was treat with a further five days IV antibiotic. Meanwhile the lung specialist cane to me and said he want to do a bronchoscopy but flushing out my lung. This was scheduled at Epsom hospital, day patient procedure but no. I had a bad reaction and they decided to keep me in. Once I’d eaten and had a drink a felt fine. I was in the azure medical unit surrounded by ppl with all kinds of infections. The consultant had said I should have bloods done and an IV antibiotic. When by ten o’clock I’d had neither I insisted on going home as I felt I was more likely to get infections there than at home. My blood pressure had settled, I had no temperature and my saturation levels were good. They insisted I sign to say I was leaving against there wishes. I’ve now been home 24hours and feel fine. I have antibiotics I’m taking at home as per the Royal Marsden and apart from some fluid left in my lung I’m good. They’ve delayed my 2nd immunotherapy infusion by two weeks as they wanted me fit. Fingers crossed for that and possible pleura drain next week xx

  • Hi Nel

    what a time you’ve had, hopefully being at home and the antibiotics will make you feel a bit better, get rid of that rubbish infection and get on with your immunotherapy

    Take care

    Julie
  • Justme19

    Hi and thanks so much. Just being at home makes me feel better. I’m certainly hoping and praying for 2nd infusion and good result Fingers crossed

  • Justme19

    Hi and thanks so much. Just being at home makes me feel better. I’m certainly hoping and praying for 2nd infusion and good result Fingers crossed

  • Oh dear Nel, it sounds like you’ve had an awful time. I always think you feel better at home. I hope the antibiotics do the trick. 

    “Try to be a rainbow, in somebody else's cloud” ~ Maya Angelou
    Chelle 

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  • FormerMember
    FormerMember

    You have had a time of it... But I quite agree, when things are not really happening at hospital, sometimes you just know better yourself, and I swear my own bed and surroundings are sometimes the best tonic for us... Thinking about you xx

  • FormerMember
    FormerMember

    Hey Nel

    I had been wondering where you have been. Sorry to hear that you had to be admitted. Pleased that you contacted them and they took action.

    Our bodies can be a right pain at times and just do not want to play ball do they?

    Not great about being stuck in hospital and I quite agree about it not being the best place to be when you are already not well. 

    Glad you are home and no doubt sleeping better too which I find is the ultimate make you feel better. Rather than being woken all hours in the hospital to check you. 

  • Hi Gina

    so nice to hear from you. I’m not so good on the online community. I try but never seem to get it quite right!

    haha yes you are so right- being woken through the night having blood pressure done etc is not the best.

    i sleep so well at home which is a joy! Also lovely as at my daughters due to dust at home from new kitchen being fitted so nice to have my two granddaughters around. My next immunotherapy (2nd) is on Monday so hoping nothing will stop me having this. It was postponed two weeks due to infection. Having had the bronchoscopy I’m hoping nothing turns up that would be a problem. 
    I’m feeling fine (apart from a bit breathless which they did say the bronchoscopy could cause as they shoot fluid into my lung to wash and collect but they can’t suck out all of it) so fingers crossed. All so gross!!

    im so happy to see life has resumed a measure of normality for you. OMG you’ve been through so much over the past year really I bet you can hardly believe it yourself.

    still taking my one pregavalin painkiller in the morning band again one at night together with one 30mg slow release morphine and that seems to see me through the day. Yes I do get some pain but not bad and it passes.

    anyway you must be on your third immuno. Are you also on Keytruda?

    xx