Hi folks. I don’t really know why im posting as it feels vey hard to do so. Almost like i don’t want to voice the words. My husband has been living with a rare form of Non-Hodgkin lymphoma (NHL) since 2015 and finished treatment in 2018. If you’ve seen any of my previous replies, youll know these haven’t been easy years for us.
He is currently really ill while they investigate a major relapse. It has, literally, happened in days. He has already started to get blood transfusions as his blood counts have deteriorated so much and so fast. He has a bone marrow aspirate next week and we hope a treatment plan or options after that. Of course the waiting is rubbish and long and he deteriorates every day.
I turned 50 last week and all the hopes for marking it were not possible. Its not about the celebrations, or the gifts or fuss but it would have been lovely to have had it pass with some marker. Instead i spent the day with him at hospital and when not doing that, cancelling a really significant USA holiday we had planned as a family. This was a holiday to mark our family, our boy finishing school and getting ready to head to uni in Sept, to be with my best friend’s family on the day she should have turned 50 and to celebrate our lives. It had more significance than i can explain. It was booked with full clinical permission, all declared for insurance purposes and here we go again with cancelling it. This was a trio originally planned for 2016 but N was then faced with cancer and treatment. And we waited 9yrs and boom, here we are again.
Im sad about all of it. Frightened. 10yrs older this time for the fight and thoroughly jaded. And devastated that my lovely husband faces it all again. He is a shadow of who he was just now and its awful. Our now 17yr old is so scared and sad and trying to be so brave. And im trying to hold it all together while working, parenting, advocating and caring.
I just wanted to reach out to this place where people get it. Thank you for listening.