Many blood cancer patients face an extended stay in hospital away from friends and family during the course of treatment. This is never easy especially if you have little ones involved like acute myeloid leukaemia (AML) patient Jane Leahy did.
We asked 15 patients for their tips and advice for how to make the experience more comfortable for others preparing for a long spell in hospital. Read on to find out more about their experiences and recommendations:
"I spent Christmas 2011 in hospital getting treatment for acute lymphoblastic leukaemia (ALL). I was lucky at that point and was able to concentrate so did jigsaws and read books. As someone else said if you can do some exercise both before and during I think it helps - the stronger you are can only be a good thing!
“When I had my transplant I spent most of my time sleeping but did watch a lot of TV - a good TV series to get your teeth into is a good diversion. Make sure you top these up on your laptop in advance to avoid hospital streaming issues!"
"Photos of loved ones definitely helped as well as keeping a journal of all the things I wanted to achieve and experience once out of hospital. I also used the room exercise bike as often as I could, setting myself a new challenge each day.
“I loved having text messages and email exchanges every day with family and friends and particularly loved receiving jokes!"
"I first went in to hospital in April 2013 and didn't come out until the end of September. I found FaceTime invaluable.
“My children would call me as soon as they got up and as soon as they got in from school and I could have breakfast and supper with them and do homework and listen to them read.
“This also meant that they saw me everyday so that when they came for a longer visit on a Sunday the way I looked wasn't a surprise for them."
“Take a Wi-Fi device to get on the internet and make sure you take a Kindle or iPad with the Kindle App. Also exercise as much as you can as extended chemo will waste your muscles. As will not eating - which is easy to do as everything tastes awful!
“Get a Hickman line put in as soon as possible to minimise the number of times you need to endure a needle and above all be kind to yourself and trust your doctors and nurses!"
Erin Christina Ritson
"We're about to enter the third year of treatment for our five year old and have spent more time living in a hospital than living at home! The two bits of advice I'd recommend above all else would be: one - take your own pillow; and two - invest in a good tablet device and download an exercise app. Fitstat Yoga was my fave.
“Days turn to weeks and weeks turn into months very easily and very quickly and you'll find your iPad will become the most important link you have to the outside world."
"I took my own blanket, teddy, laptop, photos, cards and even my own pyjamas. Having familiar stuff around you really helps!"
"I was in and out of hospital for six months and the first stay was for nine weeks uninterrupted. My first piece of advice would be to make yourself comfortable. Hospital beds are rubber for the sake of hygiene so invest in a lovely mattress topper and pillow to prop yourself up.
“Books and magazines for the days when you can concentrate are good as are those mindfulness colouring books. The internet is a lifeline and I changed my phone plan to have more data so I could download films and not have to pay for the expensive hospital services!"
"I was an AML patient in 2007 so Face Time wasn't around then unfortunately. However I did have a set of really important family photos that I took with me when I was in hospital which was the best part of the 6 months.
“Take every anti-sickness pill on offer as one of them will eventually work. Also ask for a duvet - I hated the sheets and blankets! Last and by no means least keep poorly people away from you as it will allow you to spend less time coming back to hospital with infections!"
"I was an AML patient back in 2013 and found myself in isolation for approximately 6 months all through my December birthday, Christmas and well into the New Year. It was a very difficult time but I video chatted with my family every single day and I used the time to concentrate on the fight.
“I also decorated my room with pictures the children sent me and spent a lot of time reading books on my Kindle."
"Take as many personal bits as your space allows. My son had his own room while being treated. Hence he had loads of photos up, his own bedding and his own pillows. He also had his Xbox (most important!) and kettle.
“We were encouraged by the staff to make life as homely as possible and that's exactly what we did."
Mark Zola McCulloch
"In 2014 I was diagnosed with AML which came to a shock to everyone. I was in hospital for 6 months getting three rounds of chemo.
“I requested a bike to put in my room which really helped as it kept me moving and strong.
“Above all keep active and try and remain strong mentally no matter how tough it gets."
"I was in hospital for three months with AML in 2012. As others have said Skype/Face Time is great if you have a device. Visits from family and friends are also great but only invite people who won't overstay (it's very tiring). And you want to invite people that you may need to cancel at the last minute if you're not feeling up to a visit.
“Make use of any therapeutic services that the office may have, too, like reflexology, massage, reiki etc. If the hospital can't offer it, see if you can arrange for a therapist to come in."
Rachel Anne Williams
"I had 6 months of inpatient chemo (more in than out!)
“I think my main piece of advice would be to take one day at a time and the days and weeks will then take care of themselves. iPads are also a saviour!
“My only advice would be to try to eat well and sleep well. My daughter was two when I was having treatment but she was very resilient and is now six and rarely gives me an hour's peace!"
"I spent 33 days in hospital receiving treatment for acute promyelocytic leukaemia (APL) last December, missing Christmas and seeing my then 14 month old daughter just twice in that period. I used social media to stay in touch and my family and friends came on a rota system so I was frequently visited morning, afternoon and evening.
“I also started a blog called Blogs from the bedside to communicate with the wider world and response I got was fantastic."
"My husband was bored by the long hours and as a visitor I was exhausted by the constant travelling. There are so many emotions that take over that it's difficult to know where to start with advice but the more we linked with others through social media, the more we discovered what we were going through was an ordinary sort of experience for someone with ALL which kind of helped.
“So my advice would be to share the experience and listen to others - it puts things into perspective."
If you have any questions about blood cancer or would like to talk through any concerns you might have, you can call our Support Line on 0808 2080 888 or send our Support Line Team a message.