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For many blood cancer patients, going through treatment alone will be inevitable, particularly for those who must be isolated for a stem cell transplant. It is often a difficult but necessary aspect of treatment so that patients can avoid infection when they’re at their most vulnerable.
However, due to the COVID-19 pandemic, many patients have been forced to go through the entirety of their treatment alone, with no friends or family members allowed to visit them in hospital. A blood cancer diagnosis is already distressing enough, and so to be forced to go through treatment without loved ones at your side can only make the diagnosis more difficult.
With this in mind, we asked patients – newly diagnosed, in treatment and in remission – for their tips on how to cope with treatment alone. Whatever your situation, we want to ensure patients are prepared for those times when they might only have themselves and their clinical team for company.
Here are our top tips, along with quotes from patients on how they coped.
Tip #1: Keep in touch via technology
With the rise of apps like FaceTime, Zoom and Skype, it’s now possible to keep in touch with your loved ones from anywhere in the world via video. Video calls are great because they allow you to both hear and see the person you’re talking to, and many of the patients we spoke to had used video calls to keep in touch during their treatment.
“I scheduled in video calls with family and friends – it made me feel more in touch with the outside world.”
If you’re unsure about how to set up a video call with a loved one, we’ve written a guide to the most popular video call applications; you can read it here.
For those who want to be online, but need more help getting connected, Age UK can help.
Call them on 0800 678 1602 between 8am and 7pm (Monday-Sunday) and ask them for help with getting online. They also have a number of useful articles on their website that you can access here.
Tip #2: Personalise your space
“Personalise your space if you’re able to. I was allowed to use pillowcases from home and l had a snuggly blanket to cover my bed so it looked more like my bed at home. Sometimes, it helps to make your surroundings look less clinical.”
A particularly difficult part of blood cancer treatment can be the hospital stay – it truly highlights the seriousness of the diagnosis, whilst keeping you away from home – its familiarity and comforts – when you’re at your most vulnerable.
So, try to bring a bit of home with you. See if you can bring any of your own bedding to make the hospital bed feel like your own. You could also bring in artificial house plants and fake flowers, along with room scents, all to make your room feel and smell more like home. Photos of loved ones, and even drawings from any children in your life, can all help to create a sense of familiarity too.
Tip #3: Reach out
“Reach out. If you are physically isolated, you don’t need to be emotionally isolated. You may need to make an effort if you are a private person, but it is worth the effort.”
Not everyone has a large circle of friends or a big family, but that doesn’t mean you have no one. If you feel up to it during treatment, it might be a good time to reach out to those you’ve lost contact with. Even just a quick text message can help you to feel less isolated.
In addition, your clinical team are there to support you. Your nurses especially are there for a chat if you’re feeling lonely.
And lastly, there are many people out there in a similar position to you. Which leads us nicely into…
Tip #4: Speak to others who understand what you’re going through
If you don’t feel like you can speak to family or friends about your diagnosis or treatment, there are others out there who will understand what you’re going through.
“We are here to support each other because we are the ones that can really understand what it is like.”
Forums, virtual support groups, buddies – you name it, there’s a service out there to support you. We have online forums on HealthUnlocked and Facebook, virtual support groups that take place over Zoom, and a buddy scheme that can put you in touch with a like-minded individual. In fact, all of the quotes in this article have come from patients who are part of our Facebook and virtual support groups.
To find out more about any of the services visit our Support for You page found here, or call us on 08088 010 444.
“I definitely benefited from speaking to someone else who has been through it.”
Tip #5: Give your day structure
“Plan your day with a little structure, if you are well enough, but keep it simple and don’t try to set unrealistic goals. Things like: ‘I will try and do a few exercises and walk around the ward or my room in the afternoon,’ or: ‘In the mornings I will do a crossword or watch my favourite TV show.’ Something to break the long hours into smaller chunks.”
We are creatures of habit by nature, and to have your routine disrupted entirely by a blood cancer diagnosis can be particularly stressful. Suddenly, your day-to-day life and your future have changed entirely. That doesn’t mean, however, that you can’t find structure and routine during treatment. Giving yourself small goals and tasks, even if they’re as simple as doing some stretches in bed, or reading one chapter of a book, can help to give you a sense of accomplishment and give you some control over your days. Equally, for parents away from their children, reading a bedtime story to your child over a video call can help to keep some of your usual routine alive.
And the same can be said for after treatment – many patients report feeling as though they’re in limbo again when they’re suddenly no longer in hospital or undergoing treatment, and so are forced to adapt to a new routine once again. Not everything will always be in your control, but there will be some things about your day that you can control, no matter how small.
Tip #6: Learn about your diagnosis
“Information from Leukaemia Care means I know what to expect. Very important, very reassuring, but also very worrying. A degree of understanding was what I felt I needed.”
Learning about your diagnosis may not be for everyone – some would much rather know as little as possible and simply follow their clinical team’s plans without knowing any more. However, for others it can help to prepare them for what may come ahead. We’re all different, so do what’s best for you, but if you’d like to learn more about your diagnosis – the what and why – and the treatment you might have, then we have a wealth of reliable information available to you.
Not only that, we have information on coping with particular side effects, dealing with your emotions, and practical advice for things such as finances too.
You can find out all about your diagnosis and more in our booklets. Alternatively, don’t be afraid to ask questions of your consultant and nurses, or to call our nurses on our helpline.
To speak to our support or welfare teams, dial 08088 010 444, you can view our booklets here.
Tip #7: Take each day as it comes
A blood cancer diagnosis can bring with it so many worries, and it’s entirely normal to feel anxious. In addition, when on your own, it can be even more difficult to keep control of your thoughts – you may find yourself thinking ‘what if?’.
“Take each day as it comes and deal with whatever each day brings accordingly. Stay positive and keep smiling.”
It’s easier said than done, but try not to worry – worrying cannot change the future, it only serves to make you stressed. Instead, try and take each day as it comes, focussing on that day’s highs and lows. One way to do that is by practicing mindfulness, whereby you focus on the here and now. We have a guide on mindfulness, which you can read here.
If you are struggling with anxiety, there’s support out there for you. Our counselling fund provides anyone affected by a diagnosis of leukaemia, MDS or an MPN with a grant to pay for counselling sessions. Call us to find out more, or go to our Ann Ashley Leukaemia Counselling Fund here.