It all started with a phone call at the end of April this year. I was delighted to be nine weeks pregnant; a few weeks earlier I’d had an early scan which showed a healthy, well developing foetus with a clear heartbeat. The scan photo sat on the chest of drawers opposite my bed so I saw it every day when I woke up.
I’d had some bloods taken as part of the routine first trimester checkup with the midwife. I had a chat with the nurse taking the bloods, and explained I was used to needles because I’d had leukaemia before. What type, she asked; AML I said. ‘That’s not a good one to have’ she said, it seemed she had some experience with the disease. ‘No, but I’ve been very lucky’, I replied.
Two days later, instead of a call from the midwife saying I was a bit anaemic or telling me to take vitamins, I got a call from my haematology specialist nurse telling me my counts had dropped. I needed to come in straightaway for another blood test and possibly a bone marrow aspiration. Another day later my consultant told me the leukaemia was back and there was no chance my baby could survive.
I had AML for the first time in 2012 aged 35. After successfully going into remission following three rounds of chemo, life gradually went back to normal. I went back to work, moved in with my partner and got married. I waited for two years before having fertility tests. Luckily the chemo hadn’t made me infertile, because during treatment I had received monthly injections of Zoladex to protect my ovaries and stop them from releasing eggs. My consultant said my risk of relapse was now small enough for it to be safe to try to conceive. And almost exactly three years after my last discharge from hospital, I found out I was pregnant.
Implications of further treatment
The implications of my relapse while pregnant were quite clear from the beginning. Chemotherapy can do great damage to the unborn child, which is after all why women undergo a pregnancy test before starting treatment. While there are some stories I’ve read about women who are much further on in pregnancy having been able to delay treatment until their babies were born, with AML this is unlikely as it needs to be treated urgently.
As I was still in my first trimester, I simply had too far to go to be able to maintain a pregnancy during treatment. It was too dangerous to put my body through a pregnancy and chemotherapy at the same time, and it would be impossible for the baby to survive my stem cell transplant. My consultant immediately called an obstetrics consultant to come and speak to me and she explained that the chances of keeping both me and the baby alive were very small. A termination was the only safe option at this point, and we were unexpectedly faced with the decision to end this much wanted pregnancy.
The first few weeks afterwards were hellish as my husband and I tried to come to terms with our loss at the same time as facing going through cancer treatment all over again. We struggle to understand why it happened this way. Did stem cells play a role in early pregnancy that could have triggered the relapse? Unfortunately it isn’t possible to know, and my consultant isn’t sure. Relapses after three years are rare. It may just have been random, cruel, terrible bad luck and timing.
All I wanted was a straightforward time in treatment, but a drug reaction put me into ICU for a number of days. Once that was resolved, however, I responded well to two cycles of FLAG chemotherapy and I am now in remission, awaiting being admitted for my transplant in about three weeks.
Dealing with the loss of the baby is an ongoing process and it’s not something I think you can ever get over. It seems incredibly unfair that instead of shopping for baby clothes I have spent the last three months mostly in hospital, and I still have such a big part of treatment to come. Quite a few close friends are pregnant, due around the same time I was, and this is very difficult to deal with.
I do have friends who have experienced miscarriage and it’s been helpful to talk about it with them; however, many people don’t know what to say and avoid the subject. Counselling has helped, but a lot of the time the grief is something I’ve had to put aside to focus on getting through chemo, infections and long stints in hospital. It can be too much to deal with all at once. The hospital arranged a burial and once I have finished all my treatment, visiting the baby’s grave might be a way to start to process what’s happened.
Luckily in this period while I await the transplant, which will most likely make me infertile, I have been referred for fertility treatment and if this works we will have frozen embryos for the future. I hadn’t thought this would be possible and it’s by no means clear if I will be able to contemplate a pregnancy in 3 years’ time, but there is hope.
One of the hardest things was losing the future that we had looked forward to and planned, facing the loss of fertility as well as the loss of the child we were expecting. Perhaps we can still have that future with children of our own, but with everything we’ve been through it can sometimes be hard to believe in it.
I wanted to write this blog because this situation is so rare that I couldn’t find any support for it online. If you are in this situation and would like to know more or to chat to someone who has been through it, feel free to contact me via Bloodwise. The wonderful charity Petals provides specialist counselling for pregnancy loss: http://petalscharity.org/