Watch and wait

Here are some of the things that help them stay positive.

If you have the support of family and friends, don’t be afraid to embrace it and share your worries or concerns with those close to you. Sometimes, just spending time with the people you love can make all the difference, as Karen Knighton explains.

“I try to keep a positive attitude and look after myself but I do find it difficult leading up to check-up time,” she reveals. “My family and friends are a great support – they treat me exactly as they did before my diagnosis, which really helps me cope. I am very lucky to have them.”

It’s not just those close to you who can offer valuable support. Some people treat watch and wait as an opportunity to find others who are going through a similar situation.

Adrian Cox, who was diagnosed with chronic lymphocytic leukaemia (CLL), has found great support from people who share his diagnosis. “At 45 years old, it took quite a while for my diagnosis to sink in, but support from my family and people who have CLL have been the best things of all, as we are going through this all together. No one should have to go through this alone.”

There are also plenty of support networks you can access through charities and organisations across the UK and beyond. Elaine Cameron found fantastic support at her local Maggie’s centre. “Watch and wait can be stressful, but I found going to Maggie’s really helped me control the anxiety,” she says.

Meanwhile, Jane Lancaster found a meeting of MDS patients in Manchester, “a wonderfully positive experience”.

There’s nothing to say you have to be positive all the time; everyone has their bad days. But some people find that their diagnosis actually helps them appreciate the little things in life, and this positivity can help to keep worries at bay.

Sarah Chapman recommends focusing on the bigger picture to keep a positive frame of mind – “however difficult this may seem, and whatever the setbacks”, she adds. Carol Hojenski Lowrie has a similar outlook. “Watch and wait does cast a shadow over your life, but every day I don't need treatment is a real gift, so I try to appreciate each one,” she says.

For others, simply focusing on the here and now can stop them worrying too much about the future. “I can’t do anything about yesterday or tomorrow, so I do what I can with this day and I will deal with any eventuality when it comes,” Kit Jones explains.

Another way to stay relaxed and positive is to take care of yourself – both physically and mentally. The value of treating yourself should never be overlooked, as Daisy Evans, now in her 8th year of watch and wait, explains.

“At first it was very hard, with a big shadow hovering above everything I did and the anxiety cropping up whenever it felt like it,” she says. “However, I've learned to cope with it by keeping busy, surrounding myself with amazing people and experiences and just being grateful to still be here. There is still that sick feeling when waiting for the blood test results every three to four months, but having a cuppa and cake on appointment day always helps!”

Everyone’s fitness levels vary, but you may find that exercise helps to lower your stress levels. “I work out as much as I can to stay in good shape, if the time comes for treatment,” says David Chase, who’s been on watch and wait for the last three years. “I feel very blessed to be in this situation compared to a lot of people receiving treatment.”

Andy Lambert took a similar approach while on watch and wait before undergoing chemotherapy during the second half of 2016. “I coped by doing every sports event Bloodwise could throw at me,” he reveals.

Counselling can also be extremely beneficial, particularly if you’re worried about sharing everything with your loved ones. Bethan Cawley has found it takes a great weight off her chest. “It’s a moment in time to offload and say what you really feel and fear; a time to reflect without protecting those you love,” she explains.

It can be hard to accept that delaying treatment can be a good thing, but having faith in your healthcare team, and the years of research that show watch and wait is safe, can help to put your mind at rest.

Vivien Dagley has found this really empowering. “Every time I see my consultant he assures me that the side effects from chemo can be a lot worse than no treatment and, as I am doing well, it's best to leave treatment well alone,” she explains. “Now, I feel very lucky to be on watch and wait.”

There’s no wrong or right way to cope with anxiety, so take the time to find out what works for you. Beverley Renfrew tells us that she fulfilled her life-long dream of joining a circus – so anything goes!

We hope that you find these tips helpful. Please note that these are the personal opinions of the people who have contributed to this blog, and not a substitute for medical advice. If you start to feel increasingly anxious, you should speak to your doctor.