What is protective isolation?
If you have a blood cancer you may have experienced protective isolation after you had chemotherapy. Although the set-up and rules can vary between hospitals, the overall purpose is to keep you in a germ-free environment while your blood cell counts are low.
You will be in your own room, where you will spend most of your time. It will have a bed, sink, shower and toilet, as well as an emergency button in case you need immediate help. There will probably be a filter system to keep the air clean and sterile, and the door and windows will be kept closed at all times.
Your bedding will be changed and your room cleaned daily. Your personal possessions will also need to be wiped clean on a regular basis. These measures kill germs and reduce your risk of getting an infection. All medical staff and visitors will have to clean their hands with alcohol wash when entering your room. They may also have to wear protective clothing.
In the first few weeks you will be put on a ‘low bacteria’ diet that’s similar to diets recommended to pregnant women. It will not include foods that are rich in bacteria (such as soft cheeses or yoghurts) that could cause infection.
This information is also available as a PDF and a free booklet.
Routine
Many of our patients recommend getting into a daily routine during your stay. It doesn’t have to be anything complex, but giving structure and meaning to your day can make the situation feel more normal. Making the effort to get out of bed, showered and into fresh clothes can make a huge difference to how you feel. However, on days when this is difficult, you should still try to get out of bed at mealtimes at least.
At 9 in the morning, most people in the isolation ward were still in their pyjamas. Whereas I was up and dressed and ready to take on whatever they threw at me that day.
David, who had a transplant in 2014
Entertainment
Anything that you can bring into the hospital to keep you entertained will really help pass the time. You could lose yourself in your favourite film or set up a membership to a media streaming service. Listening to music, podcasts or audiobooks is another option, especially if you don’t feel up to reading just yet.u don’t feel up to reading just yet.
I became a TV addict when I was in hospital and isolated. I never really watched television before and I insisted I'd never see Game of Thrones. My work bought me it and I think I saw it in five days!
Rachel, who had a transplant in 2016
Concentration was the hardest part for me, I struggled to read a book or watch a box set. I did start to enjoy the radio, as I could just shut my eyes and still be entertained.
David, who had a transplant in 2015
Internet
Your smartphone or other similar device is the simplest way to keep in contact with the outside world, whether it’s catching up with friends and family on social media or reading about world events. Find out if your hospital offers free Wi-Fi and check on the 4G coverage/data usage of your phone contract.
Get creative
Although it might be difficult, focusing on your creative side can be a very enjoyable experience during isolation. It can allow you to express your emotions in ways that might otherwise be difficult to put into words. Often, you might not have the energy to concentrate but if you bring in what you need for your favourite hobby, you can give it a try if you feel up to it.
Focus on something that you want to improve on, or you just want to learn about, whatever it may be. Have some goal, some objective, while you're in isolation.
David, who had a transplant in 2014
Expectations
There will be times when you don’t have the energy to concentrate on some of the things you enjoy doing. Try not to worry about it – some days will be harder than others. It’s OK if all you feel like doing is watching TV on a bad day – but you should also take advantage of the good days and do something you really enjoy.
I found it hard to read. I've always been an avid reader but I think it's hard to concentrate; you've got a lot going on mentally and emotionally.
Rachel, who had a transplant in 2016
Exercise
You might not feel like doing much at all, but even a small amount of activity can help reduce fatigue and improve your physical strength. Moving around in your room will also stop you feeling stiff. Ask to speak to a physiotherapist so they can give you some specific advice about exercises you can do safely during your recovery. This will probably be a series of low impact stretches and yoga poses.
You might also be given some simple breathing techniques to do daily. This will reduce the chance of you developing a chest infection.
Day/night cycle
It can be difficult to sleep in unfamiliar surroundings, and your sleep will be disrupted by your medical team checking on your progress every four hours. However, it’s still a good idea to keep your curtains open and let natural light in during the day. It will keep your day/night cycle in sync, so you are more awake during the day and ready to sleep at night.
For more information and handy tips on how to get a better night’s sleep, visit anthonynolan.org/fatigue
Keeping in touch with loved ones
Most hospitals will let you select two or three people who can enter your room and be with you for most of your time in isolation.
They will also be able to bring things in from home that you may have forgotten, or that you decide you need during your stay. Other friends and family will be able to come and see you – they may or may not be allowed into your room but you can talk to each other through an intercom or on your mobile phones.
However, it’s perfectly normal if there are times when you don’t feel like seeing visitors. Try to not feel guilty about letting someone else down. Your wellbeing is the most important thing to you and they will understand that you have to put your recovery first.
I had friends and family who came and visited most days and that was really helpful, a bit of the outside world coming in. You do get a bit stir crazy.
Rachel, who had a transplant in 2016
Infection risk
The potential risk of infection from seeing friends and family can be a source of worry and anxiety for many patients. This shouldn’t be a problem if they are honest about how they are feeling and follow the rules the unit has for infection control. However, if you have concerns, you shouldn’t be afraid of being cautious and challenge them if you feel you have to.
It doesn't matter how many times you tell your visitors that they need to be healthy to see you, they will still come with coughs, colds and flu-like symptoms because they just want to help you by coming to cheer you up.
David, who had a transplant in 2015
Staying connected
By writing an online blog or using social media, you can connect with your wider circle of friends and family, as well as easily updating everyone on your progress in one go. You may find it very therapeutic to write about your experiences, both good and bad.
Our Patient and Families Forum is also a great way to connect with other stem cell transplant recipients online. You can sign up at anthonynolan.org/forum
Alternatively, you could ask a few people close to you to update your friends and family on your behalf. This allows you to keep in touch with everyone but removes the pressure of having to re-tell the same story repeatedly, which can become draining.
I used social media a lot, particularly Facebook, and built up quite a community of friends who were very much there for me day or night.
Sue, who had a transplant in 2011
Children visiting
Unfortunately, most isolation wards don’t allow children into the patient rooms. This is because of the infections that children might be carrying from mixing with others at their nursery or school.
However, they might have the chance to see you and talk to you through an intercom. Video calling can also be a good alternative, enabling you to see your children face-to-face every day.
Information published: 02/08/2021
Next review due: 02/08/2024 (review in progress)