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Using our blood cancer experience to help us through shielding

Seven people affected by blood cancer share things that are helping them cope during the coronavirus pandemic.

Melody and family, who are shielding following their son's blood cancer treatment.jpg

Melody and family are shielding following their son Andrew's treatment for acute lymphoblastic leukaemia (ALL).

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Many of you are currently 'shielding' (staying at home) to help keep you, and those around you, safe.

Staying at home for such a long period of time is a huge undertaking. In some ways, it mirrors aspects of diagnosis, treatment and recovery from blood cancer. The unknowns, the physical separation from loved ones, and the time out from work or study can all feel familiar.

But if you’re affected by blood cancer, these familiar challenges can also reacquaint you with the strategies that have helped you cope in the past. In this blog, seven of our Blood Cancer UK Ambassadors have shared coping mechanisms that are helping them through this unusual time.

1. Focus on what you can achieve – not what you can’t

Tori finished treatment for acute lymphoblastic leukaemia (ALL) in October and is currently cancer-free. She’s been shielding at home since March, on the advice of the NHS.

“It’s easy to feel overwhelmed at the moment,” she acknowledges.

“In that respect, it’s a similar feeling to receiving a blood cancer diagnosis and navigating your way through treatment."

“When things start to feel beyond my control, I like to focus on achieving one thing, no matter how small. The task itself isn't important – just give it your full attention until it’s complete. Enjoy ticking it off your list and repeat as necessary!”

Tori, who's in remission from acute lymphoblastic leukaemia (ALL), shielding at home.jpg

Tori, who's in remission from acute lymphoblastic leukaemia (ALL), is shielding at home.

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2. Stay active – whatever form that takes

For Mel, who’s shielding as a result of his chronic lymphocytic leukaemia (CLL) diagnosis, exercise has remained invaluable while he’s been at home. Over the past few months, Mel’s discovered new ways to exercise safely.

“Exercise is one of the biggest things that’s helped me since my diagnosis,” Mel explains. “You won't get the feel-good glow immediately after your first few sessions, but when you start to look forward to them, you know they’re working for you.

“I was going to climb Kilimanjaro for Blood Cancer UK in June, but now it’s been pushed back to 2021. Kilimanjaro will be there next year, but the stairs are here now. So, if I need to go upstairs, I make sure I repeat the climb a few times – just for some added exercise.”

3. Do something you wouldn’t normally have time for

Following a stem cell transplant for acute myeloid leukaemia (AML) in 2016, Jane developed graft-versus-host disease (GvHD) – a condition where your new immune system ‘attacks’ the body, seeing it as foreign. It’s meant that she’s been advised to shield – something that she’s able to do with her family.

“We all have such busy lives, and now we’ve been handed the gift of time,” says Jane.

"I’ve been using this time to do the things I never normally get time to do."

“While I was in hospital, I took up knitting and produced several misshapen items that no-one ever wore! It didn’t matter, it kept me occupied. I still knit, and I like to think my output is slightly better quality now. I also have more space than in hospital, so I’ve become obsessed with jigsaw puzzles.”

Jane, who's in remission from acute myeloid leukaemia (AML), shielding at home.jpg

Jane, who's in remission from acute myeloid leukaemia (AML), is shielding at home with her family.

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4. Make time for yourself – particularly if you’re shielding as a household

Melody is also staying at home with her family. After being diagnosed with childhood acute lymphoblastic leukaemia (ALL) aged three, her son Andrew spent four years in and out of hospital for treatment.

During this time, Melody and her family learnt the value of spending time together – something they’ve been reacquainted with in recent weeks.

“We spend time together and apart – to give each other space,” says Melody. “We come together for exercise, family meals, board games and to watch re-runs of ‘Death in Paradise’.

“But it’s important to take time for ourselves too. Andrew stays connected with friends on the Xbox, his sister Clara does schoolwork while Facetiming friends, my husband Joseph still takes part in his choir via Zoom and I do a weekly quiz with my staff.”

5. Find ways to keep in touch with loved ones

Sylvia is currently shielding with her husband Tony, who’s living with ALL. They’ve found that maintaining a close connection with family and friends helps to keep them grounded.

“During Tony's treatment, we learnt the importance of contact with others,” says Sylvia. “The hardest thing at the moment is missing the family – cuddling the grandchildren and just laughing together. But regular, daily video chats have become our ‘new normal’.”

"Our three grandchildren read and play with us in this surreal, virtual environment."

6. Find what works for you – it’s ok to say ‘no’

Video calling won’t be right for everyone though, and that’s ok. Donna lost her teenage daughter Emily to blood cancer in 2015. She explains how Emily learnt that sometimes she just needed to switch off from social media and video calls.

“Social media and technology are amazing, but they don’t work for everyone,” says Donna. “It’s ok to say: ‘No, I don’t want to do a video call today’. Emily loved technology and human interaction but found Facetime too upsetting, as it meant she could see everyone getting on with things.”

It’s important to find a balance between staying connected and prioritising your own needs during this time. Find what works for you, and don’t be afraid to say ‘no’ when you need to.

7. It’s ok to ask for help

Jude’s husband Nige is living with a rare form of non-Hodgkin lymphoma, which has remained active following treatment. Jude and Nige have been shielding with their son since March.

“I didn't take enough of the help that was being so graciously offered during Nige’s initial few months of illness,” says Jude.

"I continued to try and do it all, and eventually learned that wasn't possible."

“This experience has been different. We have no family near us and have had to rely on friends for groceries. We are so very grateful to them and wouldn’t have been able to manage without their 'through the window' support.”

Nige, who's living with non-Hodgkin lymphoma, in the garden with his son.jpg

Nige, who's living with non-Hodgkin lymphoma, is shielding at home with his wife and son.

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