Lois’s story: “The hardest was when I was in hospital, when I was really ill and I just wanted to cuddle her.”

Just before turning 19 Lois, now 21, was suffering with bad back pain so severe she couldn’t lift her 16-month-old baby daughter, Lexi. Doctors told her not to worry and said it was probably sciatica. It wasn’t until she later went in for a routine appointment for her knees that a doctor noticed something wasn’t quite right and referred her for an MRI. After several tests she was later diagnosed with neuroblastoma, and went on to have multiple surgeries, chemotherapy, radiotherapy and immunotherapy at UCLH. All the while, her baby daughter and Mum would stay at Paul’s House to be close to her.

In April 2018 I started getting back pain and I went to the doctors and they simply just said ‘no its sciatica’ and told me to get on with my day. Two weeks later I was still in a lot of pain, so I went back. It was around my 19^th birthday – and at this point I had a 16 month old baby so this back pain was stopping me, I couldn’t even pick her up.

I’ve always had problems with my knees and I had a follow up appointment about that, I went in and because I was in so much pain that day I was limping and could barely walk. The doctor asked ‘what are you doing?’ and I said ‘it’s not my knee it’s alright, it’s only my back’. He asked me to go on my tip toes, when I told him it didn’t change the pain he said it couldn’t be sciatica so referred me for an MRI.

He said it could be that where I’ve had my knee problems I’ve done something to my back where I’m always compensating, so I went and had my MRI. Then I got a phone call literally two days later saying you’ve got an appointment for an MRI and CT. I told them I had already had one and they said they needed another. Then I started worrying, that’s never good is it when you get two in one, two days later and then they’re asking for another one.

After, when I was waiting for my results, I started calling my consultant to ask what was wrong and he told me ‘oh there was just a bit of shadowing, it’s fine, nothing to worry about’. He said once the results are in I want you to come in. It was August by this point.

I went in and he told me ‘I don’t really like what we’ve seen on your back so I’m going to refer you to the sarcoma unit’. He showed me the scan and certain vertebrates on my spine were a bit grey. I then got a phone call from the sarcoma people to have a biopsy done and later had a phone call through saying I had an appointment with a consultant. I started googling the name and it came up ‘cancer, cancer, cancer’ and I was like ‘oh brilliant, we know what’s coming now, don’t we?’ I then I went to Stanmore to get my results and that was when I was told that I had cancer. I was told it looked very aggressive, it’s not a very nice one, so they needed to do staging scans.

At this point they referred me over to UCLH. The sarcoma specialist there told me ‘it is not what we thought it was, but it’s really not good, so we’ve sent your scans over to Great Ormond Street and we basically have got the results, it’s stage four, it’s spread, it’s not good’. I was with my mum, my dad and my sister and they all started crying but I didn’t cry. I was just a bit emotionless, it just hit me. A consultant then told me; ‘you’ve got stage four neuroblastoma and we don’t really know why you’ve got it because you’re a bit old’.

They started telling me about all the plans for treatment, at the time I didn’t understand a word of it. And then I got a phone call the next morning asking to come in that day I was told ‘Dr Shanka wants you admitted because your tumour’s too close to your spinal cord and he wants to be able to get these tests done quickly’. I got the question of do you want any more children? And I said ‘no, no, no it’s fine I’ve already got one’ and they replied ‘good because we don’t really have time to be saving any eggs’ and I thought ‘so you weren’t really asking me, were you?’

I went through ten rounds of chemotherapy between September and November. On my first day my CLIC Sargent social worker Sarah came in and she had all these forms – and said to me ‘I don’t really fancy you sitting here filling them out while you’re in here so what I’ll do, if it’s alright with you, is I’ll fill this bit out for you and then you look over it and sign it at the bottom for me…you make sure it’s alright but I’m not going to make you sit here and fill out all of these forms’. They were the weirdest forms ever that are so hard to understand and she went through literally everything she needed to go through with me.

She helped everybody out. I’m a single mum and Lexi wasn’t at school, so my mum had to stop working to look after her. Sarah was there the whole time, she was always a whatsapp away. I was really fortunate that her desk was literally next to my consultant’s so if I had any concern during the week she would go and ask him. Everything went through Sarah and she just dealt with everything.

In November I finished chemotherapy and had to have a bone marrow transplant. My operation was meant to be on my daughter’s second birthday. And then that got cancelled on the day because there were no ICU beds and I needed one. So I went through some more chemotherapy to tide me over, and then I ended up in hospital with neutropenic sepsis, I was really poorly. After that, my operation couldn’t go ahead because my heart wasn’t strong enough from such a bad infection so my consultant switched the whole plan around and I went in for my bone marrow transplant, which I donated myself in February, and I spent I think it was only three weeks in hospital so my Mum and Lexi were able to stay in Paul’s House.

Throughout this whole time Paul’s House was our little go-to, at first I didn’t want to stay there as I thought it was different to Lexi’s life but I wanted her close and that was the best solution, which was so good. It was the nicest place for her.

After my bone marrow transplant I went in for my operation in April to remove my tumour off my back. They had to remove some of my rib to get through to the tumour and at that point my lungs weren’t very good in the operating theatre so I was in there between six and eight hours, for an operation that they thought would have taken four. I then went on to have radiotherapy which started in July in 2019 for four weeks, I decided to travel in and out every day. I was so lucky with that because it didn’t actually make me that poorly.

I started immunotherapy in the September and that was not good on me at all, I didn’t like it, it wasn’t nice on my body, it was just making me really poorly. After my second one we stopped it and since then I’ve just been doing routine check-ups. I’ve had a few scares but nothing major.

I am finding lockdown hard because since cancer I think if you don’t seize the day what is the point in you having it, I don’t see the point of me wasting my life when somebody else lost theirs, you should be so grateful for everyday. I think it’s easier now because when I was ill everybody else was still doing everything whereas now nobody else is.

I have spent every single day with Lexi 24 hours a day so it is really good. When else would you get that time to teach your child yourself; I have loved being able to teach her to read and I taught her to ride her bike so it is really nice.

Lexi was my fight, she was the fire in me. I thought there’s no option here I don’t have a choice not to survive, if I don’t survive who does she have – I did not want to be a memory for her. I just basically gave it all I got but at the same time you do think what’s going to happen, if the worst case does happen but I really blocked that all out. I was very lucky that she was at an age where she understood that mummy wasn’t very well but she also was at an age where she wanted to have naps in the day, it was quite convenient we just coincided out naps.

The hardest was when I was in hospital, when I was really ill and I just wanted to cuddle her. By the time she was about 2, I didn’t want her coming into the hospital, because it’s not a place for a two year old, all the wires, the drips, it’s not an ideal place for any kid.

She does get quite upset about me going into hospital – if I say to her I’ve got a hospital appointment today she asks ‘are you coming back?’ and checks I’m not sleeping there. She definitely remembers the time that I was in hospital, she thinks nurses are all superheroes, which is really good especially with this coronavirus she asks ‘oh shall we clap for the superheroes?’