Help with inpatient stay

Hi,

Recently diagnosed about a month and a half ago, I was called by my GP and told to go to the emergency department and expect to stay over night. Before I knew it they were doing a bone marrow biopsy the next day and admitted to the hematology ward with an ALL diagnosis. I was told not only could I not go home but my mum couldn’t visit due to covid (I’ve just turned 26 and still live with my mum we are extremely close). I spent 30 days in hospital the first couple of days in a isolated room then on a bay and hospital life just drove me crazy and literally gave me anxiety. I couldn’t sleep at all and in the end they had to give me sleeping tablets. I couldn’t cry the entire time I was in the hospital and therefore couldn’t really process.

I’ve now got to go back in for another 28 days and I feel sick with dread, can anyone give me any advice or tips on how to survive an inpatient stay? Any tips on staying positive would also be appreciated. My family and friends are constantly saying how well I’m dealing with my diagnosis so I’d like to keep them happy and not upset them with how much I’m struggling with the idea of being an inpatient. I feel like I have accepted my diagnosis and am ready to beat it so I am a little disappointed in myself for being defeated by an inpatient stay.

Thanks

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Welcome to the forum @nbk112. I am not surprised that you are feeling so upset. Getting a diagnosis like that would flatten most people, not allowing for Covid restrictions on top. I was in hospital as lockdown started and found it very stressful. I cried for two days once I was home, and it took weeks for me to recover emotionally.
Don’t bottle it up, speak to the support line, or to us if you don’t want to speak to family or friends. As for dealing with hospital stays, this time you will be better prepared. Light reading (I found short stories or chick lit were about my level) and if you have an ipod or similar with your favourite music is a good starting point. Take in some of your favourite foodie treats, herbal teas, ginger etc. If you have a favourite cushion and a couple of photos to make it a bit more like home take those if still allowed, and make sure you take your battery chargers too! I hope all goes well, and you cannot be strong all the time, so be kind to yourself

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Hi @nbk112, you must be in complete anxiety, fear and shock, your whole world has been turned upside down. It sounds as if things happened so quickly to you, I think sometimes it is easy for health professionals to forget the impact of the way they say things and their actions. I have heard so many people say they cannot sleep in hospital, it is OK to have sleeping pill.
Then you had Covid in the mix as well.
I know the ‘family and friends constantly telling me how well I’m dealing with my diagnosis so I like to keep them happy and not upset them’. I now realise others say such things to also make the themselves feel better. Actually my thoughts and feelings are just as important and valid as everyone else’s and unless I say nobody really knows what is going on for me and I have found we can all have an honest conversation and then others can say how they really are.
I found I couldn’t cry in hospital as well.
It sounds as if you are very hard on yourself, I was diagnosed in 2003 and I still get anxious before during and after medical appointments.
I find it so hard to ask for help and I am so impressed you have done so on here.
What do you enjoy? Are you a reader? Magazines or books? Do you like crosswords or puzzles? Are you studying? Do you keep in contact with people on your mobile? Do you like music? Are you a writer, some people either write stories or keep diaries? Are you a budding artist or cartoonist? You can always keep in contact with us, we perhaps understand as others cannot and are here for you. At least you can plan for this admission.
Now or any time in the future you can contact the wonderful Blood Cancer UK Support Services Team on 0808 2080 888 10am-7pm Monday-Friday and 10am to 1pm Saturday and Sunday or via email at support@bloodcancer.org.uk
Take care and let us know how you get on.

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A warm welcome to the forum @nbk112 I’m glad you found us. I am truly sorry to hear of what you’ve had to go through the last couple of months. It sounds incredibly tough and I can only imagine what a shock it must have all been for you and also for your family. It’s so understandable that you’re feeling this way about the hospital stay, as you can see from other’s replies already, you’re certainly not alone in feeling this way about inpatient stays (so it’s really good you’ve started this thread as I think it’ll be really helpful for others too). When do you have to go into hospital? Is there anyone around you you’ve spoken to about how worried you are about it?

It’s an old thread, but you might find some further tips on this previous conversation about inpatient stays - Hospital Life - What gets you through

As Erica said above, our support line is here for you so please don’t hesitate to get in touch if you ever want to talk things through or if there is anything we can do to support you at any point. We are only a phone call or an email away. And of course, this forum is here for you too!

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Hello
Do you live in an area where there is a Maggies (maggies.org)
They have lovely people always willing to help and chat even in these odd times

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Good thinking @vulcanbomber, how are you?

I echo what everybody else says @nbk112. It must just all be do so overwhelming! Please use all of the support lines and suggestions given for your next impatient stay if you need anything at all. Also, keep sharing on here. We are all here for you! X

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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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