Childhood cancer

[Kirbert2]

Does anyone have a child currently going through treatment or has had cancer in the past?

My 8 year old son finished chemotherapy today after 4 rounds and we’ve had an all clear scan a few weeks ago so after one more lumbar puncture, he’ll officially be in remission.

I’m happy. So happy, don’t get me wrong but this almost feels like the scariest part since he was diagnosed nearly 7 months ago.

I can’t stop thinking about it coming back. Statistically, the outlook is very good that he’ll stay in remission but if it did come back, options are limited and I think that is what is terrifying me so much.

Is it normal to feel this way?

I don't have a child with cancer but I do have cancer myself, and wanted to give a quick word of support. I would say that it is very, very normal to feel like that right now as you're at the point where you've finally got room to breathe and all the terrifying what-ifs are crowding in. I'm at an earlier stage than remission but I imagine I will feel very similar. Can you talk to the oncologist about how to manage fears etc - could they signpost you to helpful support? Brilliant news your son is in remission. Big hug xx

Absolutely understand @Kirbert2

My son was diagnosed 10 years ago and has been "stable" for 8 years post chemo. We found the time after chemo the most challenging, the what ifs and waiting was awful. It does get better xx

Will you be offered a post treatment support meeting? We had one involving other families, an opportunity to ask questions etc x

My son is nearly four years clear and has just turned 16 - he is thriving now but the treatment was brutal. I was amazed at how quickly he bounced back - it has taken me a bit longer and I still have moments of anxiety when he is under the weather.

He had a reactive lymph node about two years ago and it sent me into a spin but it was a totally normal, innocuous swelling that commonly happens after a cold. His consultant was amazing and they prioritized a scan so we didn’t have to sit with the uncertainty for too long.

In the initial weeks and months after his treatment ended we struggled without the constant contact with medical professionals but as the time passed we gradually settled back into normal life - now it almost feels like a distant memory.

Every now and then there will be a slight abnormality in his blood tests which give us pause but the odds are very much in his favour and only improve as time goes by.

sending love and best wishes xx

Yes totally normal, I found the time after treatment extremely hard and remember talking to our Clic Sargent social worker who said it’s really really common.

When they are going through treatment you have so much support and people to ask questions and you’re focused on one outcome - getting your child well. When treatment finishes it’s scary. Life kind of goes back to normal but you don’t feel it. Emotionally and mentally I struggled and found counselling helped. It didn’t stop the worry about it returning but it did help me process my emotions around it.

I had a conversation recently with another mum I met during treatment and have stayed in touch with and we both agreed it’s something you probably never fully get over but it’s not something I focus on every day and it definitely does get easier as time goes on.

We are now 5 years post treatment and just had her last scan and that brought up a whole load of other emotions. Happiness and relief but also sadness about what she went through and we went through as a family.

Take it one day at a time and access any support you can. Sending lots of love and strength to you all.