Going through treatment as a mum with young children
In February 2012 I was diagnosed with Hodgkin Lymphoma stage 2b. At the time I had a 5 year old in reception and an 18 month old. I needed 19 months of treatment including an allograft with my brothers stem cells. Finally in December 2013 I was told I was clear. But I still worry about the impact that time had on my children.
I recently attended Bloodwise head office for an Ambassador training day, it reminded me as we sat in that room that we wouldn't all be still here without the wonderful work of Bloodwise and the research that has allowed us a future with our families and children.
When you are faced with a life threatening illness as a parent, it isn't yourself you worry about, my first thoughts at diagnosis was my children. Mine were so young and had seen Mummy being poorly for quite a while, so in someways there was relief and I could tell them Mummy was going to get better, I was going to lose my hair and it might make me feel poorly but the doctors were going to make me better.
What I didn't expect was that I would go through treatment for so long, that my children would grow up and become more knowing through this time and that I would have to adjust my story.
Unfortunately I needed several different regimes of chemo, radiotherapy, an allograft (bone marrow transplant) 14 weeks in total in hospital away from home in isolation, over a year with a Hickman line inserted and many months of recovery.
My daughter was very unfazed about the whole affair, she'd happily sit in bed with me for hours on end having cuddles and sleeping by me, she even could handle mummy being sick, she went from 18 months to 4 years old knowing no different.
My son I fear has a different story, he grew older and more knowing throughout my treatment. He dealt with it in his own way but I've worried since then and still do what it's done to him. He's struggled at school and my immediate thought is always back to the time when he had to learn to cope with a poorly and often absent mummy. Slowly he's become more happy and confident and we are getting to the bottom of his school issues. But I feel he suffered the most from my illness and still needs reassurance when he hears me discuss hospital appointments.
During my day at bloodwise myself and another ambassador had a long conversation about the effect on our kids and how we patients with families need more support for our children. The practicalities were dealt with day to day, I had a lot of support from friends and family. But what should we tell our children? What can we do to support them through the time or ask of our childrens school regarding their support?
Our approach was that I was getting better and until my consultant told me there was no more could be done, I just wasn't going there. I couldn't face the thought of not being there for my children's future and maybe they kept me going. But i question whether the support school gave him was appropriate and what they could have done, i believe the support here can vary massively.
Also the hospital policy of no children on the ward was a major issue for me and this may vary between trusts too?
But I do feel there is room for more support for kids during and after their parents' illness, and as more and more of us survive our illnesses, there will surely be more kids experiencing life after and the anxiety they can be left with, even though they never lost a parent.