I'm Still Here
Last updated: November 2022
I know it’s been a while. And a lot has happened. My daughter is now 9 and a half months old. We have a 5-and-a-half-month-old puppy and I’m still off treatment! (The baby is easy. The puppy is much harder work!).
Which is epic.
I started off hoping to stay treatment clear when I was pregnant, knowing that it was highly likely that I would have to take interferon during my pregnancy, as I only lasted 6 weeks off treatment prior to that before my leukaemic rate shot up. So I just enjoyed every day that I didn’t have to take anything and felt really good…. Until the last few weeks when I was diagnosed with high blood pressure that ended up in a growth scan showing my baby was breech at nearly 39 weeks (and she had been breech basically the entire pregnancy but it wasn't picked up on) and an 'emergency' C-section a day and a half later when my waters broke. But back to cancer….
I stayed off treatment the entire pregnancy
I managed to stay off cancer treatment throughout!! Which I’m pretty sure was down to the new stem cells circulating in my body from my baby. Which is pretty amazing.
Trying to stay off treatment to breastfeed
I knew I was allowed 3 months off treatment after she was born, as I was allowed a year off treatment in total, but I had a game plan to barter for more. Breastfeeding her for as long as possible was really important to me for a variety of reasons.
What treatment is safe for baby?
And I did say to my consultant in the lead-up to the end of my year off treatment, that if my leukaemic rate started to go up, I would like to go on interferon as it’s safe with breastfeeding. Even though it made me feel pretty rough. I was willing to do it for her.
Interferon safe for baby, but not effective for my leukaemia
My consultant made noises about it but wouldn’t commit one way or the other. Which probably would have meant that it would have been a very difficult argument for me to have won. Interferon didn't manage my leukaemia as well as the last chemotherapy I was on, and made me feel really rough. So for my consultant to have agreed to it, it would have made no sense medically or by doing the best for her patient. Especially when formula is an option for babies even though it really wasn't what I wanted for my baby.
Thankfully, my rates are still stable
But amazingly for me (and my baby), when I got to that three-month point and my leukaemic rate was still stable and below the level where I would need to go back on treatment, I didn't have to have that no doubt difficult conversation with my consultant.
And then I got to 4 months of breastfeeding, then 5, then 6, then 7. And my 4 weekly blood tests got dropped down to every 8 weeks. And my daughter is now 9 and a half months and I’m still breastfeeding her and still treatment free!
My leukaemic rate is higher than when I was pregnant - it was 0.004% and it now fluctuates between 0.008 and 0.010%. Which I am absolutely fine about! (As long as I have 0.0 I am good to go. The minute it changes to 0.10 then it’s time to go back on. Which hopefully won’t happen for a very long time).
How do you feel about your support system?