Jacqueline – what comes after babies? not what you would expect……

Jacqueline, Sophie and Ava

When I was 18 I went to university with no intention of meeting ‘the one.’ Life, as ever had other plans and four days in I met Stefan and seven years later we were married. Babies didn’t happen right away, we made major lifestyle changes and happily, 18 months later I was pregnant. 

My pregnancy was really good. I was twelve days late and then induced by pessary. Everyone who was supporting me had gone home as we thought it would take ages – even the midwife didn’t believe me when I told her that I thought my waters had broken. So I go back to my room but after a while I called my husband and my doula and told them to expect another phone call in the night as I really felt I would not last until morning – even though the midwife didn’t believe me as I wasn’t in enough pain. By 3am I was 4 cm dilated and I pretty much went a centimetre per hour but then stalled as I was tired. Despite the advice to get a good nights sleep before hand – you know what its like. You’re nervous, excited, there’s stuff to do. So by that point I had been awake pretty much for 36 hours and the hospital gave me a very light epidural – enough to take the edge off but I still had some sensation in the lower part of my body. I pushed for about an hour or so and then she was there – it was such a good birth. 

Feeding was hard – we just didn’t get the hang of it. I tried for about six weeks, I refused to give her a bottle. I tried expressingbut couldn’t let down and would get very little after hoursof trying – it was so frustrating and I started to get really anxious. In every way she was doing fantastically apart from her weight gain and Laura, my doula asked me if we took that away was I happy with everything else? The answer was yes so we just needed to focus on putting weight on her so I began supplementing her with formula and carrying on with breast-feeding for the bonding, the closeness it gave us. We did this for about six months and this combination feeding worked really well for us.

Under 10 months later, taken a little by surprise as it hadn’t been straightforward the first time I was pregnant again.I found out on a ski holiday so that meant no more black runs for me! When I was five months pregnant we moved from Bahrain to Saudi Arabia. It was a struggle finding somewhere to have the baby there. There was very little midwife led care – it was the obstetrician you saw for all your appointments. The maternity nurses made very few decisions and because of that I did not feel the connection or comfort that I had experienced in my first birth.I ended up going in to be induced again primarily this time as I wanted to make sure that I had the doctor I found present at the birth.
However, when I arrived I was examined and I was already two centimetres dilated. I was in no real pain. So they left me to it apart from the repeated checking, the entering without knocking, the attempt to examine me without even introducing themselves(!) the light going on, the interruptions to see if I was ok – when my husband asked them to stop he was told he was being rude by the obstetrician. The upshot was that we were ignored which is what sort of what we wanted. The doctor came in at 5pm and told me to get a move on as all the other mothers had already had their babies. She then came back at 8pm and broke my waters. Sophie was born twenty minutes later – which was really quick!

We then went home and I had my two girls and we were our little family unit!

It was when Sophie was 14 months old that I woke up one morning to another one of lifes curveballs – I had discharge that wasn’t normal which I put down to candida or maybe BV (a bacterial infection of the vagina). Now I wouldn’t have hurried to see anyone about it but, this is weird I know, my dog started to act strangely. She was pooing in the house which was something she last did when I was about to go into have my babies so it made me think that something was up with me, hopefully that I was pregnant again.So I went to the gynae and they gave me medicine to clear up a supposed infection, as I was due, I asked for a smear test and a pregnancy test and all was ok. So a few weeks later I still had the discharge even after I’d finished the antibiotics and I’d also started to bleed a little. My sister-in-law is a GP and she told me to go back and get another examination done. I was starting to struggle to get through the day without a nap – which isn’t me at all! So back we went to a less then impressed doctor who wanted to know what else she should do – so I asked for a blood test as I wanted things ruled out which came back clear. A colposcopy (a procedure where a microscope with a light attached to it is used to look at your cervix and cells may be removed for biopsy) was carried out and came back clear. I then started to have a sense of doom, I wasn’t sleeping, I had night sweats – it was a miserable, miserable time. I felt there was something going on but no one could see anything to confirm my suspicions. For four months(with worsening symptoms) I went to the hospital pretty much every week to receive a result, do a test, to ask them to do a test that I had looked up and all were clear. I was eventually referred to a gynae/oncologist for him to do a cone biopsy. By this point they had found CIN1 cells (these are cells from the human papillomavirus which may become cancerous but quite often disappear on their own). The doctor told me he usually told patients to come back after six months but because of everything that was going on he wanted to look and check that there was CIN2 or CIN3 cells which would need to be removed as they can become problematic and lead to cancer.I then had a biopsy and I knew from the way he spoke to me after the operation that the news was bad (even though he didn’t confirm anything until he had the biopsy results back). I knew he knew. So a few days later my husband had come home for lunch which he NEVER does and ping! goes my phone with the test results – I have cervical cancer. I couldn’t absorb the words other then carcinoma this and stage that – all displayed in black and white on my phone. I went into shock, thought I was going to throw up,my fingers went numb. 

In order for the full diagnosis to take place and rule out spread I needed MRI scans, CAT scans more test on different parts of me and these would determine if I had a radical hysterectomy & lymphadenectomy or radiotherapy and chemotherapy. So I head home and have to be retested to find out why it hadn’t shown up before on any of the previous tests. It was shown to be very high in my cervix so the tests just hadn’t reached the right bit when they were carried out. There were concerns that due to its position so high up it could be on my perimetrium (outer lining of the uterus) which would have meant months and months of treatment.

My devastation after the obvious was the impact of being sick on my children. I was scared about how side effects of chemotherapy and radiotherapy would affect my ability to be a mother as it would involve eight months of active treatment. I had to prepare mentally for being man down, not in my home environment being able to look after myself let alone these two beautiful daughters of mine. I knew people who managed treatment and ‘life,’ but I had to be ready for the fact that I may not be that lucky. 

I think when you’re in the eye of the storm as a patient you find great reserves of strength and you are positive for others as much as yourself. I feel it can be harder for your loved ones to look on feeling helpless. I tried to remember that it is a grief for everyone, that the process we have to go through is not linear, you may go through the same stage over and over again but to say it was hard, is an understatement.

Then once the tests were done I had three weeks of the darkest, deepest depths of hell waiting for the results. The results came back – borderline stage 2 cervical cancer -usually treatment is chemo/radio. As I was only 32, two further exploratory examinations under anaesthetic were done, and I was given the option of a radical hysterectomy or radiotherapy/chemotherapy. I took a leap of faith and opted for the less gruelling option of surgery with robotics as the recovery time is lessened and I only have five little scars on my stomach. So the next week I went in for what was a 9 hour surgery. Three further weeks of waiting to hear whether they had got it all and the words ’short of a miracle we could not have hoped for a better margin’ had everyone in tears of relief.I would attend regular check ups to make sure there was no reoccurrence. 

One of the downsides of robotic surgery is that on the outside what has happened seems minimal, but on the inside it is a different story. I had a catheter which was removed after ten days as a precaution against nerve damage to the bladder. Standing or laying down were fine, but sitting was problematic due to swelling from the lymph node removal and for 8 weeks I was not allowed to lift anything heavy (including the girls) or drive. Once you are given the all clear there is a sense of ‘well now what?’ well – we try and get back up and where I want us to be as a family. It took time but I think we’re on the right track.

The message I wanted to tell was that a smear test isn’t prevention – it’s a really useful aid to detect, hopefully the first and easily treatable, signs of disease that can lead to cervical cancer. If you feel that there is something wrong – do not stop until you have reached a diagnosis. You owe it to those that love you to be well and take care of yourself, you owe it to YOU to look after your body and if you are a parent then, quite frankly, your children need you so get things sorted!

It has been a hard story to tell. Cancer is not a dirty secret but I also don’t want people to see me as that person who survived cancer. I am so much more than that. I didn’t want to have to explain why I felt sad and then people say ‘at least you have your girls!’ or ‘don’t let it ruin your life!’ I know its a natural reaction and theres no malice but its hard. I understand when people don’t know what to say. I’ve learned not to try offer solutions when people are going through hard times but just acknowledge their struggle and give them permission to be sad or angry or frustrated. I think we are naturally programmed, as humans, to put our best foot forward, chin up but none of it changes the fact that if you have a life-threatening illness at a young age, your confidence in living to a ripe old age is fundamentally shaken and the family I would like to have had of three or four children won’t happen. Who knows? We may not have done that but the chance for that to happen has gone and there will be sadness around that. So I make the most of what I do have – amazingly supportive family, a wonderful husband and two spirited independent girls who keep me going every day.