International Brain Tumour Awareness Week 2019 - Louise's Story

International Brain Tumour Awareness Week 2019 - Louise's Story

31st October, 2019

In 2013, a month after my 40th birthday, I started getting this feeling of constant white noise and in June that year I had a massive seizure out of the blue, something I had never experienced before. It was very scary, I was in and out of consciousness, 2 ambulances were called and it just smacked me in the face.

I was taken to Addenbrooke’s and they said there was an unexpected swelling but the cause wasn’t clear - they couldn’t see the tumour at that time. They put me on anti-seizure medication to be careful and discharged me. In February, I still felt ill.  I was constantly tired and felt like I had flu. I finally went to the GP who signed me off for a week and prescribed penicillin because my glands were up, but that penicillin weakened the effect of my anti-seizure medication. I still felt like I had flu and one day my husband was walking the dog and this uncontrollable tremor started in my right leg. When my husband came home, I said “I think you need to call an ambulance” before I went into another full seizure.

When I’m having those big seizures, I come in and out of consciousness and I could hear the A&E staff discussing whether they could give me more sedative because it wasn’t knocking me out. I came around in resus and my husband Paul, who is normally very placid, was just saying; “I am not taking her home, there’s something not right ”. I was admitted onto a ward and had another seizure the next day and I remember the nurse coming over and telling me “It’s not a seizure because you didn’t black out”. These seizures just kept happening and my family asked for me to see a neurologist because we needed answers. I was moved onto a neurology ward and was still having constant fits and seizures. Eventually, after many CT and MRI scans, the neurologist told me I had a brain tumour. It was all very surreal and as the doctor walked away, I remember Paul and I just turning to the TV and watching the Winter Olympics.

I told my kids and family about the tumour and the very next day we were discussing surgery options. The doctors in this meeting said I could have a biopsy first, but it would be nearly as intrusive as the surgery. They gave me a 20% chance of not having speech when I woke up, 30% chance of me being disabled and 50/50 chance of me surviving the operation, but said the tumour was going to keep growing and the seizures would get worse so I had the surgery. It was a 6 hour operation and I was awake for half of it. 3 hours in, they woke me up and because they were so calm, it helped me keep calm. I made a joke saying “don’t ask me any maths questions because you’ll keep me down here forever!” They talked to me and asked if I could wiggle my toes, could I count to ten and I was having conversations so they knew that they weren’t touching anything they shouldn’t and reducing the risks they had talked about.

The next day, the surgeon came to see me with loads of medical students. I was talking openly and I could move my legs, and he was saying how much of a success the surgery had been, but the next day, he came with his bosses and I was just freaking out. I couldn’t hear anything and it was because of the swelling on my brain. You know when you go swimming? It was like a constant swishing noise and it was just my brain settling down. I got quite grumpy with them and said I didn’t want to talk to them, because I spoke to everyone yesterday. I was starting to find the ward noisy and my tolerance was getting low. The surgeon said he thought he’d got 80-85% of the tumour out. It wasn’t a lump as such; you know when you think of a tumour, you think of a lump? Mine was like loads of little grapes that had to be picked out.

I was discharged after 72 hours and I came out of hospital with a huge scar and part of my hair shaved off but that was to be expected. When I got home, I was really tired and had headaches. The district nurse and my GP were brilliant. I had the staples removed and then we had the follow up appointment about 3 weeks afterwards. Since the diagnosis, the doctors had kept saying to me, “it’s benign; we think the tumour’s benign and the pressure of the tumour is our main cause for concern”. I went with Paul and my mum to see the specialist nurse and before I sat down, literally before I sat down, she said it was a Grade 4. I said, “What, 4/10?” because I was adamant I wasn’t going to Google anything and she said “no, Louise I’m really sorry it’s 4/4, it’s cancer”. Chemotherapy is the last resort for a brain tumour because it’s not that effective so the plan was radiotherapy. I’d thought the surgery was the tough part, but I couldn’t start it until my scar had healed and those 4 weeks were the longest wait.                    

I was fitted for a radiotherapy mask and after a 2 week wait it was ready. The mask had tiny millimetre squares on it and they marked where I needed the treatment, then they left the room and the radiotherapy happened. I was on a treadmill for the next 30 days. I’d go home and have to prepare for the next day but there wasn’t much chance to get upset, I didn’t let myself get upset. I had a tour of a hospice and I focused on getting organised, for example with lifts to hospital. Paul still had to work and I didn’t want to rely on my mum, but I had a good support network of friends who helped out. At that time, they said it wasn’t curable and before each treatment, I’d write a card to the kids and a card to Paul every day. I’d write to the kids about when they fell in love, when they got married, when they went to prom and I wrote to Paul that I wanted him to live and love again.

The hospice gave me counselling because I’d been having these discussions during my treatment about where I wanted to die, did I want to be put on life support and all those sort of questions. I went into those counselling sessions and spoke about things I couldn’t tell anyone else because I didn’t want them to worry.

Suddenly, after 30 days the treadmill stopped. It was a very long 6 weeks before they couldn’t say whether the treatment had worked. Then, they explained to me that because the tumour wasn’t a lump, they had no fixed thing to “zap” so they burned two holes in my brain, 2 inches apart, to prevent the tumour left in there from travelling. 10 days into the treatment, my hair was falling out in lumps and I’ve still got a bald patch because unlike chemo, radiotherapy burns the follicles of the hair so it never grows back. When it was falling out, I asked if I could just shave it off because it was so lopsided. I was jealous of the chemo people’s hair because it just came out all of a sudden, whereas I looked like a wonky monk! I wasn’t allowed to shave it off because if I nicked my head, then they would have to halt treatment.

I’m now 5 years post-surgery. I've had many partial seizures and I’ve had a couple of scares where I feared that the tumour had returned, but following MRI scans they reassured me - maybe I will always have this fear. After the treatment was over, I knew my brain wasn’t up to speed and I needed some help cognitively. The hospital gave me this game that you’d give to pre-schoolers and I was thinking “this is going to be to be easy” but when I got it home, it wasn’t. I was always a mess in the follow up consultations and one day we had a conversation I found particularly tough but later on, I saw an advert for evening classes and signed up to an access class, doing 3 A-levels in 1 year. This helped because I had something to focus on, I had to study and I had homework to hand in, just something else to think about and a reason to get off my bum and stop watching daytime TV. I had seizures and I had tired days and there were times people would say to me “just give in, just stop the course” but I was determined and towards the end of the year, the teachers started talking about a degree. That was another level but I knew I wasn’t ready to go back to work and with my degree; I could catch up on essays if I had a rough day and I did it! I graduated on the 12 October 2019 with a degree in History and Sociology.

In May 2019, I had quite a big seizure. I had scans and they said it definitely wasn’t the tumour but they diagnosed me with epilepsy. I had my driving license taken away but I was getting scared driving anyway, worrying if I could brake in time now and I knew I wasn’t fit to drive. My epilepsy and brain injury have really affected my right side mobility and that’s when Headway Cambridgeshire came into my life. I’ve had an OT assessment at home which I resisted for a long time, but now I’ve got hand rails to help me get around in the house . My 1:1 personal training sessions with Sophie from Headway Cambridgeshire,  alongside my physio, is helping strengthen my right side and improve my mobility so hopefully I won’t trip over and fall as often.  The gym sessions are helping, I’m increasing my weights and repetitions and I’m able to speak to Sophie about things that are scaring me like;  why am I scared of heights and stairs and why can’t I think properly about how to get on that chair? So this is where I am now, I’m looking for work but taking everything slow and steady with the support of my family, Headway Cambridgeshire and my doctors and physiotherapist.

Louise

Louise and her family

The Hospital Brain Injury Co-ordinator became someone who absolutely understood how I felt, I didn’t need to explain. I could talk about my fears and worries. She was such a great support through the difficult days, but could also celebrate the small step successes, which was important to me.