Advice from other parents

We asked other parents what they did to cope with stress and how they looked after their emotional wellbeing. This is what they said worked for them.  

Get help from professionals

"If you are struggling emotionally, ask for help, don’t try to be too brave, you are only human.  If might be medication, talking therapy etc but don’t be afraid of it…what you are going through is massive and the chances are you will need some sort of help."

"I underwent 6 months of counselling. Lots of crying, talking and being kind to myself. Finally accepting it was nothing I did that caused it was a help. In addition, lots of tea, meditation and giving into the idea you may need antidepressants and realise that there is nothing wrong with that. It is a unique situation which very few people understand. Get yourself through it as you need to."

"I found counselling helped post treatment too."

"It's my grandson who has cancer and I found it extremely difficult to cope with watching him and my daughter. I did have a meltdown 4 weeks ago and went to see my GP. I'm now on medication I do feel a bit better."

"I know I could ring my lovely CLIC Nurse if I needed to though. Oh and Mars Bars. Ate a lot of Mars Bars."

"Utilise the incredible support you will receive from charities such as CLIC Sargent.  They can help in so many ways and if they can’t they will point you in the right direction and take away so much stress and pressure."

"I am on meds and currently awaiting counselling for PTSD all through my GP."

"I had counselling with my daughter but I still have days that take me straight back there."

"Medication. Without it I'd be a mess."

"Meds, a great partner, help from GP and cutting negative people out of our lives, time off work (the company was great) and more meds!"

"Therapy was my way of getting over the stress, keeping everything in becomes too much and then diagnosed with PTSD… great to have someone to talk to and not feel like a burden."

Find a community and get support from others

"We now have a new found leukaemia family we have made at the hospital and we all talk, share good & bad times & help each other."

"My outlet was making sure everyone around me was as good as can be. Talking to other dads and tea. Rivers of tea. Not one member of staff had to make a drink when I was on the ward."

"Get to know the other families on this journey with you, they will be such an incredible support for you."

"Not being afraid to ask people for help - this one I've struggled with the most, but not only does it take the pressure off me, it also helps others feel useful too."

"Talking to other parents helps too, had invaluable support from brave parents in their own journey and I hope we sometimes helped them too."

"My best medicine for me was to talk with family, friends and in the hospital. I am naturally a supportive person so was a shoulder for other parents if needed. Also when I am struggling I will say, good communication with the nurses and doctors and I would ask if we didn't understand what was being said."

"Speaking to someone who understands childhood cancer is vital."

"Talking openly with family and friends. My daughter’s courage as she battled this horrible disease and laughing with my 3 girls and husband."

"Support from family and friends is vital. They were able to take over the care of my son who was 10 months at the time of my daughter's diagnosis. This allowed me to focus on being there for my daughter."

"For me it was my family holding me together; my daughter's courage, my mum standing steadfast beside us every day and my sister when she could."

"Talk to other parents and cancer groups on Facebook - no one else really gets it other than other cancer parents."

"I've set up a Support Group on Facebook 'Oncology Parents Support Group UK (ParentsUnite). The Group has helped me as the members have all gone through it."

"I also met someone during my son's chemo. I was single when he got sick and we got chatting about CLIC Sargent as he's been raising money running half marathons. An unusual chat up topic but it worked - we now have a baby!"

"I talked with other parents, took strength from those able to give it and offered it in return to those that needed it. I cried when I needed to and laughed when I could. My son (a teenager) was strong, irreverent and bloody determined and I took my lead from him."

"Not needing to talk to everyone helped. I gave progress reports via a Facebook page my friends set up for us. This allowed us to receive support to from all the lovely messages we got. Reading accounts from other parents and accessing support groups is further support."

Do what makes you feel better

“I kept a diary which was published. I hope it has helped others families through the nightmare of childhood cancer.”

“I started running, first half marathon to celebrate the end of chemo, London marathon for 5 years post chemo and next year is my daughters 10 years post chemo and going to do an iron man!”

“It helped me to keep a diary. Since diagnosis I kept a journal, probably because I found it hard to say some things out loud. I haven't looked back at it but it documents the gains as well as the struggles, milestones and day to day events, one day I will hand these over to my brave little girl.”

“I wrote a diary - lots of practical stuff but also my fears, feelings and thoughts.”

“Good coffee & books were always on my "must have" list for hospital stays!”

“To cope with it all we buried ourselves in fundraising. Fundraising helped everyone in the community bringing new friendships and love.”

“Never, ever turning up to a hospital without a shed load of biscuits, crisps and water......which I still do to this day!”

“I have recently been putting my emotions into writing poetry and I'm finding this really therapeutic and helpful. Although in one way they are silent cries for help I guess, as I'm not confident to share (due to the depressing nature and honesty of some). Childhood Cancer Awareness month could be a great time to be brave though!”

“I think keeping busy is an understatement for my coping strategy. We set up a sculpture trail in 3 acres of gardens and woodland. Being outside digging, clearing, having bonfires seems to have worked really well. I clearly remember a consultant saying that if my child is well, to make the most of it and get out and about, we followed that advice. They also told us not to move or change schools during treatment, we ignored that advice and the changes were positive for our family. I guess there is no one way. My child's dad has also thrown himself into training for a half marathon for CLIC Sargent.”

“I found faith as did my amazing son. We lost him in 2012 after a 10 year battle starting when he was 16. Writing his book after he died has helped me and lots of others.”

Take each day as it comes

"Think forward not back, take time out to try to switch off - yoga is great for this."

"When you need to cry, have a good cry, no one can be strong all the time and that is okay.  It washes your eyes out so you can see clearly again and carry on the fight."

"No matter how dark things seem you will find an incredible inner strength and fight that you never thought possible."

"Positivity. Taking each block at a time. Not worrying about what may be, and what has been, but enjoying the here and now and having lots of adventures when the health of my 3 and a half-year-old allows."

"Plan not to plan."

"I took each day at a time. I never looked beyond the next dose of chemo at bedtime. I never planned ahead. I didn't look forward (or back), focusing on the here and now and what I had to do right there and then. Otherwise I don't think I could have got through the two years of treatment."

"For me it was positivity, positivity and more positivity. And to stay cocooned in family love."

"Taking each moment as it comes - don't try to second guess what might happen, you'll drive yourself insane."

"I made sure we lived every day for the moment."

"A big step for me was to accept the fear of loss and be okay with what I was feeling."

"Making each moment count, and most importantly not allowing negativity - there was no hate or f*** cancer for us as that attitude wouldn't have helped me."

"You switch you adapt to this new normal of life and you survive."

"We do lots of arts and crafts, mindfulness and like a lot of people have said POSITIVITY and stay away from negativity."

Put yourself first sometimes

“Found just having some time alone to think and feel helped a lot. Sometimes too just putting your head down on the table and let it hit you from time to time in a quiet place. In the end I had to take time off work which helped massively.”

“Having some time on your own also helps you to get your head around things and don't beat yourself up with what ifs!”

“Be kind to yourself so you can keep at it. You don't have a choice in this, so look after yourself.”

“Counselling, and carving out small chunks of time away from the hospital for exercise or seeing friends - tried not to feel guilty about those little 'me' times... it enabled me to keep going longer than I otherwise could have.”

“One of my stress relievers was to have a manic scream and cry whilst driving home on the rare days when I left the hospital to visit my two older children.”

"When people ask if they can help, let them… we had wonderful friends who made us proper home-cooked meals and brought them to the hospital every Sunday and friends who took our other kids out for days out. People genuinely want to help so please don’t be afraid to ask them."

"Look after your physical health to the best you can. You will be dealing with lack of sleep, constant worry and anxiety and your health will suffer. I know it’s hard because your child is your priority but your child needs you to be there for them so rest when you can and eat the best way you can to keep you healthy."

Enjoy family life when you can

 “Spending time with my other two younger sons helped me. My husband and I took turns in hospital. When it was my turn at home it was great to go bowling, cycling, go to the cinema together with the others. It set me up for the next grim 24 hrs on the oncology ward.”

 “In the hospital, I loved watching old Doctor Who episodes with my son and talking about Game of Thrones plots. He died in March 2016, still miss his company to watch certain films and programmes.”

“When my little boy was able we didn't stop doing things. We even went camping, albeit within an hour’s drive of the hospital and I will never forget people's faces seeing a little 4 year old with his chemo line in on a campsite. As much normality as it allowed and lots of fun along the way!”

“Spending a lot of time with my son as I could and being as "normal" as we could be helped.”

“We tried to do lots of special things when we had a break from hospital. It cost a fortune financially, but keeping everyone happy was the important thing.”

“I took one day at a time. I looked to the future and went overboard in planning my daughters christening, 1st Birthday, 1st Christmas etc. ensuring that our family and friends were involved.”

Keep a sense of humour

“We laughed and loved. Even when he was blue lighted in an ambulance at 1am in the morning to hospital he needed a wee ... so we had to pull over and let him out as he refused to wee in a bottle with the Dr and nurse there we laughed.”

“Cake and a dark sense of humour help.”

Where next?

Created August 2017, next review due 2019.