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Help with inpatient stay

Hi everyone,

Thank you for all your comments, I was admitted yesterday and even though I told myself this time I would remain positive and get through I’ve done nothing but cry since I was admitted (so opposite problem to last time!!!). I am struggling with being away from family mainly as the hospital was going to allow visitors this time however due to the spike in covid cases has gone back to no visitors. I am lucky to be able to phone and facetime however its just not the same as having someone there.

I have done as advised and brought plenty to keep me busy however any tips of remaining positive would be greatly appreciated!

Thanks!!!

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Don’t be afraid of those tears. Everyone will understand. I remember how we used to support each other when we were on the ward, whether we were low, angry, or just crying through being overwhelmed. Perhaps you can focus on something you can do in the future (difficult in the present climate) and allow yourself treats. Perhaps you could try a new skill…cross stitch or embroidery are doable in hospital and while convalescing at home, also the adult colouring books, and will keep you busy.
I wish you well in your treatment and hope for better times

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Afternoon @nbk112, we’re sorry to hear your struggling being away from your family, especially when you need them the most during this very difficult time. It’s ok to express your feelings and it’s reassuring to know that you feel comfortable to reach out to your online community for support. I’m sure you will get some useful tips about remaining positive and being able to manage whilst being an inpatient. Please also remember if you would like to talk to someone from the support team, we are here to listen and support you, you can find all the ways to get in touch on our website here: https://bloodcancer.org.uk/support-for-you/talk-blood-cancer/.
Best Wishes Bav

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Hi @nbk112, oh, I really feel for you being so tearful. I have this theory that my emotions have really been all over the place since lockdown. Elated to get an online grocery delivery and just feeling overwhelmed and tearful the next minute.
I have always found going away makes me tearful and very alone and then hearing you cannot see family must be a double whammy.
I think there is also the other side when you can never have privacy on a ward so sometimes you cannot talk verbally but you can communicate with us.
Yes, what would we do without modern technology and things to keep you busy.
Be kind to yourself I think being tearful is really natural, use us to be able to say what it is really like for you in hospital and @Bav.BloodCancerUK has given you the support line telephone link.
I look forward to hearing what’s going on for you again soon, take care.

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I echo what everybody else has said. I’m sure every one of us would shed a few tears at least. You may not feel it but getting through each day makes you very brave in my book!

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Staying in hospital is really unpleasant even at the best of times but you having to cope with Covid restrictions as well must be so distressing. I spent 9 weeks as an inpatient originally but at least I was allowed visitors. I coped with hospital by trying to give myself a daily routine of reading listening to music, watching something online and an afternoon nap to catch up on all of the sleep I was losing because of nurse interruptions. Nurses albeit well meaning drove me up the wall, not respecting my boundaries, rearranging everything around me so that I couldn’t reach anything. The tea lady took pity on me and used to bring me extra ice cream. I can’t remember eating so much ice cream in my life. I’m not sure how to get around Covid restrictions. Have you and your family got access to Face Time or Zoom? It’s a poor substitute for a real visit, especially from people you’re really close to. I real feel for you having to go back in for a further 4 weeks. I hope things get better for you.

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Hi everyone,

Thank you for all of your help so far, I have now been in for 5 days and have had an even tougher time than I thought I would. I feel like crying constantly and cant hold it in when talking to family. I feel like I’m gonna be miserable and homesick for the entire stay and at the same time like its never end. I try to keep busy but just want to talk to my family all day, so when I have no one to talk to I can feel the panic build up and cant concentrate on anything I brought in to keep me distracted. I’m worried if I keep being down mentally it will affect me physically and not deal well with chemo which delay my discharge date.

I know people have been through worse and when I get to the end it will seem like its gone fast but I’m really struggling.

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Have you tried listening to music or meditation podcasts? I have always been pretty good at zoning out when listening to music…which was great when I had some procedures. Don’t worry about lack of concentration, but think about getting through an hour, a morning, a day. Try and think of things that make you smile, an outing that you took, a favourite place, daft stuff you did as a teenager. Write them down, and when you have a low moment read them to yourself. Keep telling yourself that you will get through this. Remind yourself that you are strong. I also thought of someone or something that really really angered me, and imagined getting rid of that anger with my treatment. Hoping the days get easier for you

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Hi @nbk112, don’t forget we are all here to support you and perhaps you could write daily diaries to us. Fill them with anything you need to as you know we will understand. I have heard a lot of people say it helps to get it out in writing, perhaps especially in hospital where other people will hear if you say anything. You have achieved 3 days, well done and we will get you through this stay even if it is an hour at a time.

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Hi @nbk112. I know I’ve said it before , and I know It may not seem like, it but you are are being so brave. You are getting through each day. I’m so glad you are sharing on here. There is always somebody to listen and always will be so use and abuse is as much as you need to. Writing a diary is a good idea, just gets everything out of your head and on to paper. You take care X

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Hi,

I’m slowly getting better but I’m still feel like crying up untill about 4-5 because I feel like the day is over. Also one of my consultants has said I may be able to leave after day 15 instead of 28 if I continue to do well so I’m terrified of pinning all my hopes on leaving day 15 and he could say actually you have to stay untill day 28 and I’m devastated, not that Ive not done exactly that.

I’ve started speaking to someone who’s just coming to the end of their ALL treatment and that’s helping a little. I guess it’s a way of writing down my feelings without having to think about it too much. I think I’m scared of writing down my feelings in case I’m overwhelmed by them as I feel like I’m constantly only just keeping everything together.

Thanks

Niki

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Hi @nbk112, you are doing absolutely brilliantly and the days are going by. Perhaps it is not about counting the days to, but counting the days you have achieved. I am impressed by you hospital can be such a busy place, but also feel a very lonely place and the days drag.
I am glad talking to someone in a similar situation to you helps, yes, I think it did me when I was in hospital.
I look forward to your next post.

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Hi Niki, was just wondering how you’ve been getting on the past few days.
Really glad you’ve started speaking to someone whose coming to the end of their treatment, I hope it’s encouraging for you. It’s so understandable that you’re worried about feeling overwhelmed by your feelings - it sounds like you’ve got so much to cope with at the moment and I can only imagine how hard it all must be.
Hope you’re doing okay. Take care, Alice

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So things have gone down hill for me a little emotionally. My consultant has said he now doesn’t think I should leave untill my wbc are back in normal range due to coronavirus however he is willing to let me leave 2 days later than he said but a week before my chemo finishes and finish as an outpatient but it’s not his first choice. He has said he will leave it up to me.

I just feel like my chances of contracting coronavirus as an outpatient are similar to that as an inpatient for me. As my mum is self isolating in preparation of me coming home, and I would drive the two min distance to the hospital and the hospital would strictly enforce ppe and social distancing for all visitors. Here on the ward there are people in and out of my room all day and I can’t guarantee they have not been out to restaurants and/or have children and such.

I understand that I have to be extremely careful but I just feel like I will recover better at home and whilst he has to look after my physical wellbeing I have to survive this mentally and emotionally too.

But I’m worried about annoying my team too.

Am I wrong?

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Hi @nbk112, perhaps I am learning that I feel better about myself if I say my needs otherwise I feel yukky about myself, but the choice is yours. Let us know what you decide.

I think you have to listen to your team and make an informed decision. Only you can decide what’s best for you. Keep us updated x

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Hi Niki, how are you doing? Did you and your consultant come to a decision around this? I do hope you’re doing well.

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I was let go on the Sunday 4th and finished chemo on the 11th. However yesterday I was taken into hospital again with severe uterine bleeding and my FBC come back with a raised CPR. They have took blood cultures peripherally and from my picc line to test for infection. They also took a chest X ray which came back clear and an abdo CT to check the bleeding. They have said that whilst they can see bleeding in my CT scan they couldn’t see anything pointing to infection. They also took a water sample to test for uti. All these cultures take 48hrs to be reported on. My mouth was hurting last week so I was started on penicillin which was making it start to feel better. I think the infection may be in my wisdom tooth.

Does anyone have any experience with being admitted for IV antibiotics? Such as how long you were in for and what kinds of things they looked for before letting you go?

Also does anyone have any experience with having a wisdom tooth infection whilst neutropenic?

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Hi @nbk112, gosh you must have and be going though a scary, horrible time of it. I also know your feelings about going into hospital.
I cannot help medically but we are all here to support you and if you would like to talk to someone the support line is there for you. Please let us know how you get on and take lots of special care of yourself.