What It’s Like To Get Cancer When You’re Six Months Pregnant

What It’s Like To Get Cancer When You’re Six Months Pregnant

Hospitality professional, wife, mother-of-two… stem cell transplant and leukaemia survivor – Julia Lindquist’s life as she knew it changed forever when she was diagnosed with a rare form of cancer six months into her second pregnancy. From what it’s like to face saying goodbye to your family and the reality of chemotherapy, to how the experience has changed her outlook on life, here Julia shares her incredibly story…
Photography: instagram.com/j_lindquist

Before my diagnosis, I was living the normal life of a young working mum… I was back at work full-time after my first maternity leave and was six months pregnant with my second son. In January 2017, I went for my six-month midwife review where routine bloods were taken. The result must have been alarming because the midwife kept me there for a while whilst she tried to book follow up appointments to find the cause of my results.

The midwives initially suspected it was pregnancy anaemia… Never for one minute did I consider cancer as an option. It wasn’t until I sought a second opinion from a haematology doctor that they explained the initial blood tests were actually very anomalous. Within 48 hours, the haematologist had arranged a bone marrow biopsy (a nasty procedure at the best of times, where they put a big needle in your hip bone and pull out the marrow) and about a week later I got a call to say the results had arrived and I should go to hospital with somebody as soon as possible.
At this point I was pretty certain we were about to hear the worst… I went to the hospital with my husband and mother, and they directed us to the chemo ward. We then received the first diagnosis: I had a rare blood cancer in the myelodysplastic family, unusual for my age group and extremely unusual in pregnancy. I remember just crying, for my son and baby, my husband, my mother and myself. I blanked out most of the rest of the meeting while my husband and mum asked lots and lots of questions.
The doctor said, “It’s just bad luck”… After the diagnosis, I immediately thought it was because I’d been a heavy smoker for 15 years before I had kids, but they assured me it wasn’t. My case was very unusual, and the doctor wasn’t certain how much of my condition was being affected, exacerbated or misrepresented by the pregnancy.
I had weekly blood tests to check if the disease was developing into leukaemia… Which it eventually did. I also liaised weekly with the obstetrics team to continually check the baby’s growth and that he was ok. They always said they would induce him earlier than his due date but wanted to wait as long as possible (up to 37 weeks at the latest) if there was no sign of the disease progressing. Thankfully, up until that point there wasn’t.
The next six weeks were really tough... Coming to terms with a cancer diagnosis is hard enough at the best of times, but receiving one while pregnant and dealing with the uncertainty of the coming weeks was incredibly hard. Whilst I didn’t have leukaemia at that point, I was in hospital at least two days a week having blood tests, blood transfusions, biopsies, ultrasounds and meetings with doctors... All the while trying to be present and act like everything was normal for my other son, who had just turned one.
At this point, I started doing a horrible version of nesting… In case something were to happen and I was suddenly out of the picture. I prepared documents with my older son's routines, feeding times, favourite meals and doctors’ details, and got him used to his two grannies picking him up. I also did nicer things like finally make my wedding photo album and our older son’s photo album of his first year – doing lots of practical preparation for our future, as yet unknown, helped me process it all.
When I went into labour, I can hand on heart say I’ve never been so scared… My induction, at just under 37 weeks, started fairly well but quickly turned sour after I had a severe allergic reaction to a platelet transfusion, given to me to mitigate blood loss in a potential emergency. I asked my husband to call my mum, convinced the worst was about to happen – looking up at a team of doctors whose badges say ‘Head of Resuscitation’, ‘Head of Intensive Care’, ‘Head of Haematology’, ‘Head of Anaesthetics’, to name just a few, while your face and body start going into early anaphylactic shock and labour stops is terrifying. Thankfully, after some injections, drips, questions and hard-core doctors’ chats about our options, Lucas was born about 13 hours later with no pain relief and minimal fuss; it felt like a miracle after the previous weeks.
After the birth, I had six weeks at home with my family, but suddenly got very, very sick… Within the space of a week I developed two big abscesses (this time under my chest) and then, within two days, started getting fevers of up to 40°C. I was admitted to hospital for what I thought would be one night and ended up staying for just under eight weeks.
Two days after my admission, we received more devastating news… Another bone marrow biopsy showed my disease had progressed to an acute myeloid leukaemia. The leukaemic cells had already taken over 40% of my bone marrow and I needed to start chemotherapy immediately. It was a huge shock – we’d always known I would need treatment, but the speed at which the leukaemia came on was totally overwhelming. It also meant I was completely mentally unprepared to be in hospital and sadly only got to see my children twice, although we did manage to communicate with them on FaceTime despite their young age.
I needed two rounds of chemo and a stem cell transplant – an incredibly daunting procedure… The risks are huge and mortality rates are high. In order for your body to accept the new stem cells, they must first completely wipe out your immune system with very intense high-dose chemotherapy. The first 100 days post-transplant are therefore crucial as you’re extremely vulnerable and need to be very careful. This can be particularly tricky if you have young children (who catch absolutely everything) – we had to take my eldest son out of childcare and the kids weren’t able to socialise until after six months post-transplant.
There are lots of dark times when you’re going through chemotherapy… I spent hours in the middle of the night scouring the internet to try and find out my survival statistics until I got too depressed to carry on reading. The only thing that could stop me was my husband, who would repeatedly ask me to stop reading what we now call the ‘dark web’ and somehow manage to get me back to sleep. But the worst period for me still has to be the immediate weeks after the first diagnosis, whilst I was still processing everything and thinking the worst (mostly that you’re going to die and leave your family behind).
The other lows were the side effects of the treatment… Extreme fatigue, nausea, abscesses (both internal and external), shingles, ulcers, a permanently bad stomach, very high temperatures, shakes, loss of taste, mucositis, horrible skin rashes and flare ups, nail damage, headaches, eye problems, hair loss, allergic reactions, blood and platelet transfusions, Hickman and PICC line insertions, lots of injections – the list goes on! Then all the endless tests... I’ve had more blood tests than I could ever have imagined, 13 bone marrow biopsies in 14 months, four skin biopsies, four abscess removals, endless chest x-rays, CT scans, MRIs, ECGs and the list goes on. I’m probably radioactive!
Surprisingly, I didn’t actually mind losing my hair… The first time it started falling out I already had so many other nasty side effects to deal with that losing my hair was the last thing on my mind. Also, my older brother helped me there too. On the day I started chemo, he arranged for a hairdresser to come to hospital and cut my hair to shoulder length (it had been very long). Then, when it really started falling out about three weeks later, he cut it for me in hospital to as close to my head as he could get with the blunt, sterile hospital scissors. In the end, my husband and I ended up shaving our heads when I got back home in front of my sons to try and minimise the impact of mummy suddenly being bald.
The strangest thing has been people not recognising me… Or getting used to me with a head scarf, although that’s probably a much bigger deal for me than anyone else. I still think of myself as the old me, until I catch my reflection in the mirror – I more or less get a fright each time. On a lighter note, I did show my older son a photo of me with hair the other day and had to explain that it was mummy! He only really remembers me bald now which is very strange.
But, thankfully, I think my children are too small to be affected by what’s happened… Hopefully they won’t remember the negative parts. If anything, they’ve been very lucky to be surrounded by our families, who they probably wouldn’t have spent so much time with otherwise. We’ve had an incredible amount of support from both our in-laws and absolutely would not have managed without them.
Having cancer has changed my outlook on life… I’m probably less tolerant of what I consider to be bullshit these days; definitely much more appreciative of normality; and I try very hard not to take things for granted – even the daily 5am starts with my youngest son. It’s also shown me how truly important family and friends are and how we shouldn’t take them for granted either, as we so often do when day-to-day life takes over.
My husband and I are now closer than ever… I wouldn’t have got through any of it without him, although there’s been lots of difficult moments. Suddenly facing a life you never planned for is very scary, and I often wonder how he coped because I don’t think I would have managed even half as well had the situation been reversed.
Being back at work is wonderful…  I love my job and, having had a year break, I feel raring to go. It’s so nice to feel like I’m contributing again. Health-wise, it’s reassuring to know I’m strong enough to go back and be able to balance work and personal life as before (with the support of my medical team).
Life seems to be back on track, but there’s now a new prong to our ‘normal’… Most people have work, personal life, holidays and hobbies but we now have hospital to add to that list. Dealing with cancer is an ongoing process, and I still have to go for treatment, regular checks, blood tests and biopsies – it’s almost like another routine. Plus, I still have a very weakened immune system so any simple problem like a chest infection or flu will most likely land me in hospital for a day or two, which can be very frustrating. It’s taken me a long time to accept cancer as my new reality, but now that I have, things are a lot easier.
Prior to my transplant I never shared anything publicly on social media… Initially, I wanted to raise awareness of blood cancers and stem cell registries, but I also decided to document the process to show the reality of life with cancer. While everyone’s treatment and side effects are different, it’s so imporant to be able to share experiences and ask about those harder moments rather than just imagining the worst. If I can help anyone in a similar situation, it will all be worthwhile.
Julia was recently given her first conditional set of disease-free results but will continue to be monitored regularly and remains under the care of her medical team.​ Follow her on Instagram at Instagram.com/J_Lindquist

To learn more about blood cancers, please visit Macmillan, and to become a stem cell donor (which is an unbelievably easy process, both to sign up to the register, but also to physically donate) please visit Anthony Nolan if you are under 30 or DKMS UK if you are over 30. Help save a life today.

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