My journey

Two years ago my eldest had just turned five and started school. My middle child was three and my baby had just been born. Two days post-labour I was hit with the most shocking news of my life. I had cancer. Hodgkins lymphoma to be precise. Apparently it’s the one to get according to the haematologist. I’m not sure anyone expects to hear that news. I remember sitting in a waiting room after my biopsy and hearing a woman sobbing. I was thinking to myself that won’t be me. I assumed she’d been given the news I wasn’t expecting. I thought they’d tell me it was a cyst, or similar. 

This is my story… 

I am a mummy to three beautiful children and have an amazing husband who I have been married to for nine years. Before I had my eldest, I suffered a missed miscarriage. I then had my now seven year old, closely followed by my now five year old. When trying for my third child I suffered a further three miscarriages. I was referred to a specialist at the hospital who put me on several different medications to help any further pregnancies. My husband and I had decided that we would have one last go and if the next pregnancy ended in miscarriage then we would not try again. 

The medication helped and I fell pregnant and this pregnancy was a breeze. I had normal tiredness as I had had with the other two but this time I had a four and a three year old to run around after. Injecting myself daily was not a highlight but it was necessary so I got on with it. I was closely monitored by my obstetrician. The only niggle I had was an ache under my right arm. I couldn’t say how long this ache was there for I just know it was more than six weeks but not my whole pregnancy.  I kept feeling under my arm but could not locate anything untoward so assumed it was a pulled muscle or pregnancy related.

I must have been about 35 weeks gestation when I caught a cold from my three year old. It was a normal day apart from this virus and my three year old telling me she couldn’t wee. I thought she had a urine infection so when I went for my flu vaccine that evening I booked her the only available appointment at 8am in the morning.  I was tired so went to bed early and fell asleep. I woke up about 30 minutes later and my arm was aching. I was lying on my side and felt under my arm and there was a lump. I showed my husband who was blasé saying it was probably just a swollen lymph node, he’s had one before apparently! 🙂 So told me not to worry. He was cross I had woken him up. 

The next morning my youngest was peeing as normal but I took her to the doctors anyhow. We found there was nothing wrong with her but whilst there I asked the wonderful nurse if she would look at this lump. She did and although she didn’t say much she took it seriously and referred me straight to the hospital. Soon after this, another lump came up on the left side of my neck.

I was seen at the hospital within about ten days and I went on my own. Still telling myself it was nothing to worry about. I saw a breast surgeon who looked and wanted to take a biopsy. She explained she could not do a proper biopsy because of the medication I was on. It was too risky. So I went on my way with an appointment to come back a week later. She told me to bring someone the next time. She in the meantime would be in contact with my obstetrician. I was asked about having an induction but by this point I was 37.5 weeks gestation so did not see the point in it and said no. 

Early the next week I was contacted by my obstetrician who told me to come off my medication and have the biopsy, which I did. This time I saw a haematologist as well. She told me she thought the lump was a lymphoma but nothing to worry about. To this day, I don’t understand that comment!!! How can you not worry about having a lymphoma?

I was asked again about an induction but I was now under three weeks off having an induction if my pregnancy went over so again, I refused. I was 38 weeks and four days. I left the hospital feeling totally confused and overwhelmed. My new consultant, the haematologist, was happy for me to wait and see when I went into labour. She told me if I needed treatment we would start in three and a half weeks. Three days later my third child, my first boy, was born. My only child to be born early. God was there in that – him being early meant a lot. 

Two days after he was born I was diagnosed with cancer – Hodgkins Lymphoma. 

WOW… What a bittersweet time. I had my beautiful baby. I WAS totally in love all over again and yet, I was devastated. My dreams for my new baby were ripped apart. I couldn’t feed him how I wanted to. I couldn’t be the mummy I wanted to be to all my children. I had dreams and plans for this time with my children.

My daughter had just started school. I had just given birth. How was I going to cope? How was I going to feed my children when I felt rough? How was I going to cope when I felt rough and my husband was at work? How can I lose all my hair? How? How? How? The questions kept on coming but the answers were simple. I would cope. We would cope. We had loads of support and we had faith in God. 

The next six months we settled into some sort of routine. I was told I would have chemotherapy for 24 weeks. Six cycles, twelve rounds (each cycle was four weeks with two rounds of chemo). I had chemo one week then I felt better-ish for one week and then I had chemo the next week, and so it went on. I had ABVD for four rounds and AVD. This was horrible and talking about the drugs still makes me nauseous. 

After one round through a cannula I decided to have a PICC line put in. Why would I go through bi-weekly pain when I didn’t need to? This time was hard enough. The downside was that I had to have it changed weekly. I took my son to the hospital the first time I had it changed. He cried. After that, they told me it would be easier to come to me so they did. The nurses were wonderful. 

Who would think at 37, or any age in fact, that you would have to buy a wig!?! Well I did. It was one of the most bizarre experiences of my life and boy they are expensive. I cut my hair twice during this experience. The first time was before it started to fall out. I didn’t want the pain of seeing my long hair disappear from my head slowly. I also felt someone else could use what I had. My hair was always something I had taken care of. A friend kindly cut it for me and I donated my hair to the Princess Trust. The second time I had it clipped by my husband. It was coming out thick and fast by this point. By cutting it I controlled it, to a degree. It made me feel in control. My eldest’s reaction to this was the only sign of trauma she showed through the whole experience. 

Wig shopping. I had high hopes. I wanted a wig that had the rainbow hair underneath but nowhere did these. I thought I would look good in a wig that was similar to my own hair but the answer to that one was no. There wasn’t too much choice where I went but my little big brother came with me as did a very close friend and my husband. It was a daunting experience but I did come away with a couple of nice wigs. Totally different to what I had in mind. Both were short for starters. The long-haired one made me look like Morticia Addams. Not a good look for me! 

During my treatment, my eldest caught scarlet fever. I thankfully didn’t but I had to spend a night in hospital as I had a cold and a temperature above 37.5. I came away with another injection to get my bone marrow working to produce antibodies. Ouch! This was painful when the drugs started working. 

I had to have blood tests every two weeks to check my body was OK for the next chemo. They expected my neutrophils to be low as this is what my chemotherapy did. It meant I had no resistance to any kind of infection. God was so good. There was so much going round school/preschool but I was protected from it all. Apart from the scarlet fever, so were my children and husband.

There were many highs – 

• My little big brother visited me from America.
• My close friends and my church showed their support – they provided us with meals for 12 weeks (each chemo week). We were given in excess of 60 home cooked meals. WOW! I didn’t have to feed my children any ready meals.
• I felt loved from every angle of my life. God surrounded me with His love. My friends and family surrounded me with theirs. 
• I made some wonderful new friends.
• There were so many kind people surrounding me. People I knew well. People I didn’t know well. And complete strangers.
• I had a prayer group. When I needed something they prayed. I immediately felt God’s presence. 
• I felt so much closer to God. He wrapped his arms around me and my whole family. One night when I was feeling so, so low – God spoke to me and gave me some promises. They carried me through this challenging time.
• My girls, my girls, my girls, were so strong and so together through it all. They were a rock and they continue to be. Of course, they were scared but we talked, laughed and they just loved me. 
• My boy – he was simply amazing.
• My husband. He was incredible.

There were many lows – 

• I felt terrible, sick, weak and exhausted. I am still struggling with fatigue. 
• I had to give up breastfeeding. This is still my biggest challenge. 
• A couple of people I thought were friends walked away.
• I lost all my hair. I still can’t decide what to do with it. 
• My children had to go through this with me. 
• I was told I shouldn’t have any more children.

I took my son to every chemo appointment. The hospital let me have a private room to facilitate this. I took my girls to one appointment. The worst one – they lost my bloods and it took forever but the girls were amazing. Each appointment was harder than the last but God was gracious and helped me get through them. I could see Him all around my treatment. There were times I wanted to give up. It was hard. But I had three beautiful children I had to fight for. The thought of leaving them was worse than what I was facing on the road ahead. 

My girls’ school/preschool were amazing and supportive. They gave the girls a safe haven to be themselves. They could do this at home too but at school they could escape the uncertainty of home. I am so proud of these two little ones. They are incredibly brave and caring. We talked about everything and answered every question we were asked. The only subject that wasn’t spoken about was dying. I was told this wasn’t the likely prognosis so we decided unless things change we would keep these fears to ourselves. We did as much as we could to keep their routine/life as normal as possible. During good weeks I did all the school runs. During chemo weeks I could barely get up off the sofa so I was just there for them, giving mummy cuddles, reading, and just doing what I could.

One incident that stands out for me was in an ice-cream café. I was about midway through my treatment when we took the children for a treat. In there a woman pointed out to me that my son was asleep and said to her daughter ‘why don’t you sleep like that?’ she proceeded to ask me if I bottle or breastfed. It was an extremely sensitive question at the time and I snapped ‘he is bottle but I don’t have a choice I have cancer’. She said that was why he slept so well so I told her honestly my girls and my son have slept exactly the same and they were breastfed. Anyway, she was with another lady and her family. This other lady sat down next to me and said ‘this may seem like strange but I’m a Christian and I feel God is telling me to speak to you’ I replied ‘so am I’ we chatted about what I was going through. WOW. She prayed for me in the middle of this teeny tiny café with onlookers. God is good. I needed that prayer – his timing is perfect.

Two years on and I am still here. I have my regular check-up tomorrow. I am not sure I will ever get used to the aches and pains I still get when I am feeling run down but I have to learn to live with the new me. I have three beautiful children and a fabulous husband. My head still gets cold. Will I ever get used to short hair?

I could ask why me? But then again, why not me?

I will leave you with my promises from God –

• I will be with you throughout this journey – He was!
• I will protect you and your family – He did!
• If you’re in pain I will feel pain alongside you – He did!
• I will love you and comfort you – He did!
• I will hold you and your family in my hand and carry you – He did!
• You will get through this with me – I did!

I can do all things through Christ who Strengthens me. Philippians 4 v 13. 

There are so many people I would love to thank personally for helping me through this time. The wonderful NHS for starters. Without them I might not be here now! Mummy’s Star Charity, The Willow Foundation.

The rest of you – the list is too long. You know who you are and what you have done for me, you are all simply amazing and I love you.