Getting used to hospital life

So I’m now on Day 7 of chemo. I’ve now finished all the nasty red daunorubicin and am just on cytarabine twice a day. Today is my last day of antibiotics so from tomorrow onwards I’m allowed on day release 🙂

Mostly I’ve been feeling ok. Waves of nausea come on throughout the day and moments of nausea due to gastroparesis (my stomach no emptying) but I’m still managing to eat. Feeling a bit tired and gums are a bit tender but this should be pretty much the worst of it so I’m doing really well 🙂

Still waiting to hear back from Kings to find out the plan going forward. I believe the next steps are to finish this cycle of chemo and do a bone marrow biopsy on day 28 to assess the level of cancer still there and decide if more chemo is needed.

Now that I’ve been in hospital on and off for the last month I thought I would give all of you that are lucky enough to have never been an inpatient an insight into hospital life and routine here on haem/onc at PCH.

6am – Woken up for observations (Blood pressure, heart rate, temperature, etc). When my PICC line has been working they would take my blood and then attach me to my antibiotics

6:30am – My pump will be bleeping to say my antibiotics are done…. call the nurse… wait to be flushed and detached

8am- Cleaner barges in to empty bins in my room (I swear this couldn’t be done any more noisily if they tried)

8:30/9am – I get breakfast delivered in with a choice of various cereals or (bendy) toast. Drug round is done and any oral meds are administered. Plebo comes in to stab me and take blood if my PICC line hasn’t managed to bleed.

9/10am-  My chemo will be administered by the senior nurse. A HCA will try and turf me out of bed so my bed can be made, which is when I would normally treat myself to a luke warm shower (can’t have any patients burning themselves can we?!?!)

10:30 –I will have to give my lunchtime order (chosen from a menu which stays the same for my whole stay, but all in all isn’t too bad as long as you remember all food is steamed, i.e. steamed fish and chips are not pleasant!!) to the hostess when my dinner tray is collected and be offered a hot drink

10/11- Observations done. Cleaner comes in to clean my side room (everyday they pour bleach down the sinks and toilet, dust down the sides and clean the floor)

11/12 – Doctor normal pops in to quickly assess me (listen to my chest, etc) and check how I’m doing.

12:15 –  Lunch is served and lunchtime oral drugs are given out

1pm- Lunch trays collected and dinner order given in

2pm- My antibiotics are hooked up and my observations done, again I will be detached around half an hour later

5pm – Tea is delivered

6pm – Tea time drug round, observations done and evening chemo given. Evening bin emptying.

10pm – Final drug round, observations done and antibiotics administered for again half an hour

2am – The most fun time to be woken up for observations!! Some nurses are also more discreet than others on the level of lighting they choose to throw upon me as they enter the room!

In between – I either sleep, nap, knit, watch tv, do yoga, go for short walks, listen to my audio books, read, etc.

I have found that after the last month in and out of here I have become conditioned to the early morning wake up calls and usually wake up before the nurses come in to do my obs or when i hear the shaking of an apron outside my door during the night!! I have also learn the art of falling back to sleep almost straight after being woken up, although this doesn’t happen every time. Reckon I will still wake up at 2am and 6am even when I’m set free!!

6 thoughts on “Getting used to hospital life

  1. Lesley Kalina

    Sounds about right emma. You are doing so well hun. I found the routine helped…at least not forgotten. Shall I pop in over weekend if you have time. Don’t want to disturb. How’s your hair doing?? Babysitting Anya all night so may pop in. 😉

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    1. Hair is staying well and truly attached at the moment! Bit disappointed as it means I’m going to have to trim the ole lady garden!! Ha ha. I should be on day release as of tomorrow, so should be able to meet you somewhere for coffee or something if during the day 🙂 x

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  2. Sarah Reakes

    Hi Emma, It brings it all back to me. During my intense chemo, I was in a twin room arrangement and had to share with an elderly patient who was lovely and due to her Myeloma cancer she had lost the use of her legs and so she had to be wheeled to the loo any time night and day, which was not only a a nuisance to her but also meant there just wasn’t any peace. I also ended up with the most awful mouth ulcers, as well as tummy problems which did cause me a great deal of discomfort and made eating very difficult, but like your description the food was pretty dire. I think the most frustrating thing of all throughout my intense chemo and the conditioning chemo was the amount of time it took for the nurses to flush and detach me from the drips/pumps, especially if it happened to coincide with the change-over of shifts! It sounds as though it is the same for you!! The other thing I was expected to do throughout both stays in hospital was to self-medicate all my oral meds which I have to be honest I thought was asking a bit much, especially when at times I really did feel pretty awful, but I notice from your posting that at least you have been spared doing this. My hair didn’t start to fall out until at least two weeks after the DA treatment had finished and I think that this is the norm. Once it started to come out in hand-fulls my hairdresser called in and shaved it off for me. I’m so pleased you’re doing okay so far, and you have a wonderfully upbeat attitude towards it all, with your keen sense of humour which as we all know, is so so necessary when you’re going through all of this. You really do have to try and see the funny side of things; your description with regard to the cleaners making such a racket is spot on, as I had exactly the same. Some nurses also made a hell of a racket just pulling down the roll of plastic aprons or getting out the plastic gloves outside my door (this was when I was in isolation for the transplant conditioning chemo stage). You do have to learn how to cat nap!! Keep smiling!!

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    1. Seems like most people go through similar experiences in hospital!! I am certainly getting better at cat napping and early nights (think I gave in around 7:30pm last night) How long did your side effects last after the chemo? Last day was yesteday so looking forward to my appetite hopefully coming back over the next week or so, or is that a bit optomistic? x

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  3. I know we have only met once Emma, but I picture you with that beautiful smile of yours, writing the story of your daily routine right now with good humour mixed in with the reality of your preparation for your transplant and I just wanted to tell you that I am thinking about you & wishing for good things & good times to happen every day for you xxxx

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