This week, the UK Government announced new measures to encourage self-isolation in order to contain the spread of coronavirus. But what are the best ways to manage during isolation? To find out, we asked someone who knows – a stem cell recipient called Jayne, who gained ample experience of isolation following her transplant.
So Jayne, how long were you in isolation for?
My treatment started on 22 February 2012. While going through my stem cell transplant, I spent 13 weeks in isolation in hospital. I had my own air-locked room, with the air being changed every 30 minutes, and my own bathroom. I did not leave this room for the whole time.
However, my total isolation was 10 months. When I returned home after my transplant in mid-August, I wasn’t actually allowed outside because it was harvest time and the spores in the air were a risk to me. An infection could have killed me. I had to be in isolation for 100 days post-transplant, till around mid-December 2012. So I lived with ‘isolation’ conditions for 10 months.
What are your top tips for dealing with isolation?
- Have a routine! It doesn’t have to be a complicated routine, just something to make life feel normal day by day. After breakfast, I always had a shower, got dressed and most days I put my makeup on! I would then put the radio on or listen to music and sit in my chair and crochet. I think crocheting was a form of meditation for me. At lunchtime, I would watch TV (Gino and Mel had a cookery lunchtime programme). My husband Martin would visit me in the afternoon for an hour or so.
Once he’d gone I would either meditate, sleep, or do some other activity such as sudoku, brain-training, more crocheting or read a magazine. My evening meal usually came around 5:15, so I would eat that while watching Pointless (I don’t think it’s been off our screens since 2012!). After watching the news, I tended to get ready for bed and then watch TV or a movie before lights out around 10pm. Obviously, there was a lot of other stuff going on such as receiving my chemo and other drugs, observations being taken and consultants doing their rounds.
- Think of what you can do to keep yourself entertained. Personally, I love crafty things, so isolation was a good time for me to learn a new craft. My sister-in-law taught me the basics of crocheting, I then used YouTube and a child’s ‘Learn How to Crochet’ book to get better. I love to read. However, when I was going through treatment, I couldn’t concentrate on a book. So I read magazines. Other ideas are audiobooks (join Audible!), puzzle books, podcasts and music. I now love to paint furniture and give it a new lease of life. I obviously wasn’t allowed outside, but if you can get outside and it is safe to do so, I really do think we should incorporate a daily walk or gardening into our routines, as the sun comes out the Vitamin D will do you the world of good!
- Exercise! I didn’t do exercise during my isolation period. When I was in hospital and in just one room, I hardly did any walking at all. This is by far and away my biggest regret. I am still paying the price for this eight years on. My muscles switched off and it is the hardest thing switching them back on and I now have issues with my tendons. Do what you can – walk, do gentle stretches, or if you’re able to do bigger body workouts, do them.
Being isolated is no excuse not to exercise. I am now part of an online programme which is all about wellbeing and all of the exercise programmes are home-based – you can find lots of these online on sites like YouTube. The NHS also has a website with loads of routines. Here is the link: nhs.uk/live-well/exercise/ It is amazing.
- Keep in touch. This was hard for me as I didn’t have wifi and my dongle wasn’t strong enough when I was in hospital for video calls. I did have a blog which connected me with the outside world, and this was amazing for me. It really was a lifeline! However, it’s fantastic how much things have progressed in just eight years and we can keep in touch with video calling (Whatsapp, Messenger, Facetime, Skype, Zoom etc).
It’s much lovelier speaking to our loved ones and friends when we can see them. Additionally, there are groups being set up all over the country to support fellow neighbours and villagers. I would really recommend joining them. It’s not just shopping/prescription support people need at the moment. We need to know that people care and that there are others who can help if we need it. We need proper connection, let’s reach out and create that.
- Meditation and gratitude. These things were so important to me and allowed me to cope with everything that was being thrown at me. I started meditation in 2011, when I was first diagnosed. It brought about a feeling of calm and peace and, as my situation speedily progressed, I felt able to handle it with a clearer head. There are lots of meditation apps you can download: Headspace, Calm, Smiling Mind. They also do meditations for children (awesome!). This might be fab if you are with children for many weeks. It allows them to slow down too. Alternatively, there are lots on YouTube. Headspace do free trials, which can be great if you are beginner and would like tips on how to meditate and go about meditating.
Gratitude has had a phenomenal positive effect for me. Every day, I used to wake up and think of three things I was grateful for, not just casually but with a deep feeling, connecting myself to that gratitude as much as I could. It fills you with a feeling of love and content. When I went to bed, I did the same, trying to think of different things I was grateful for. As you get used to focusing more on the good things in your life, you become more peaceful and content. For me, this meant I wasn’t fixating on my illness and didn’t live in daily fear! Your gratitude can include anything – your family and friends, your community, the fact that the sun’s shining, the rain’s falling and feeding the garden, the amazing support you are receiving, the fact that you can eat, that you can exercise, that you can connect with people. The list is endless.
- Eat nutritious food (this didn't happen in hospital!). As much as possible, think about what you are eating. I truly believe food is medicine. Eat crap, feel crap. Eat well, our bodies respond and feel better.
- View isolation as an opportunity. When I had my 10 months in isolation, despite being so desperately poorly, I had this overwhelming feeling of peace and calm. Since my transplant and my isolation period, life has gradually got filled up again with work and responsibilities. I have spent probably the last four years searching for that feeling of peace and calm again.
So as strange as it sounds, I am looking forward to this period of isolation. It’s a chance for us all to slow down, to connect, to breathe, to simplify life, to appreciate what we have. Yes, I have massive fear around my parents and my in-laws, but we must just do what is necessary to protect them. That is all that matters, protecting our elders and vulnerable.
When all this is over, it will feel strange. When I did finally start going to areas where there were other people, it was scary. I chose to shop when it was quieter, but if someone sneezed even a couple of aisles away, I would freak out. If someone sneezed near me, I held my breath and walked away and then freaked out (I still do!). I am a master at holding my own breath! I do hope we will continue to practice these cleanliness routines when all this is done, after all there are always people around you who are vulnerable.
I hope this has helped. Stay safe everyone, stay sane everyone. We’re in this together, we’re going to get out of this together.
If you or someone you know is going through a stem cell transplant and needs support as the COVID-19 pandemic unfolds, please call our patient services team on 0303 303 0303, or email: patientinfo@anthonynolan.org to speak to a member of our team.