Lisa’s story
Lisa and Liam
Lisa speaks of her special bond with her brother Liam who died from cancer.
It was August the 23rd 2019, the sun was shining, and it was the first family holiday I had enjoyed for 5 years due to nearly losing our son to meningitis when he was 9 months and consequently suffering from PTSD from the series of events.
I received countless therapy sessions and support from my family and friends especially Liam my brother. We would talk at least 3 times a day. I didn’t speak till I was 3 years old because Liam spoke for me. Even at the age of 38 if we went for dinner Liam would still order for me. He was my head of reason, and we’d talk through any problems we had to get a solution.
Liam hadn’t been well since the 16th of August and was at his caravan in Hastings with his family including his girls and stepson. He felt dizzy when he lifted his head and was bed bound which was not like Liam. He was the life and soul of every party and would’ve loved to have lived in a combo together.
He would spend most of the summer at his caravan and relax. We left for our holiday in Spain on the 15th and I called him every day. At first, he explained he felt sick when he lifted his head. I said if pain killers don’t work try an antihistamine as I get migraines if I eat something that doesn’t agree with me. He tried both and still felt the same.
Wednesday came and his girlfriend took him to the drop in where he was told he had a virus. Thursday arrived and I asked where his girls were, and he asked what girls.
“I knew something was up then, I actually thought he’d had a stroke and felt I needed to come home to him. I begged him to go to hospital which he did on Friday 23rd August 2019.”
They gave him steroids which enabled him to be able to actually use his phone to call me and say how much better he felt. They also gave him a scan. He said he’d call and let me know what the plan was. I really thought he’d had a mild stroke and he’d be fine. Liam never took tablets he’d always say I’ll be fine Lis.
On Friday night we were at the kids disco. I was worried but felt settled when Liam said he felt much better.
Then my phone rang at 8.30pm. It was my mum who doesn’t call when we’re on holiday. She was whaling down the phone, ‘Liam has a brain tumour!’.
I tried to stay calm, but I didn’t know what to do. I started looking for flights home. That felt like the longest night in history. I couldn’t sleep, I felt sick, I felt stuck. Liam and I would reason everything out, we had done since teenagers.
On Saturday morning we spoke, and he said wait till Sunday’s flight. The doctor has said it’s operable and it’s going to be ok. Waiting for Sunday’s flight was so hard. When we returned home, I was exhausted, our whole family was exhausted. My eldest son Owen was 16 at the time and I was trying to not panic him as he totally adored Liam.
We decided to travel to Liam on Monday as lots of people had gone to visit him and he was overwhelmed on Sunday. When we arrived Monday Liam looked rested, but I could tell he wasn’t fully with it.
Thinking back, he hadn’t been with it for about 2 years. He kept saying he had glitches going across his eyes. I said go and get your blood pressure checked. He did and it was always low. It didn’t raise alarm bells with the Doctors.
Liam had a follow up appointment on the Tuesday in Brighton due to being in Hastings at the Caravan. I returned to work. He called and was anxious as was we all. He said once he’d been seen he’d call. We were planning on staying in Brighton if that is where the operation would happen.
“Around 11.30 I got the call from Liam to say the tumour is too far in and inoperable.”
It was actually torture by now. Liam was deflated, exhausted, and confused. I said we will find an answer.
I searched for best brain tumour hospitals and UCLH came up. I called them and asked how we’d get Liam referred there. The lady explained the process which we then started. Liam lived in north London and was due to return to work as a Maths teacher in September.
Around 1-week later Liam was given an appointment. We travelled as a family (mum, dad, my sister Alice) and met Liam and his girlfriend Nicola there. We waited in the small green outside as Liam requested. When he came out, he seemed ok but not fully with it.
He explained they said they had suspicions it was a GBM4. And if it was you have around 8 months to live.
We were puzzled. He explained he’d need a biopsy to identify if their suspicions were correct. I googled and wished I hadn’t. When we arrived home, I googled and googled to find good news stories as which there was around 3. Losing Liam was not an option in my head.
I think another week passed and Liam had the biopsy. The whole time he was in the operation I prayed like mad. After the biopsy he was as clear as a whistle. They drained fluid from the surrounding of the tumour, so he was great.
Still a bit dazed and not the cheeky chap he was normally but much clearer. I think due to a lifetime of my mum going into blind panic both Liam and I would reason things through to a good ending. I said to Liam well do whatever we can to make him better.
A week again after the biopsy we went to an appointment to understand the outcome. I briefed Liam and said he had to stay strong because no matter the news we can turn this good as we always do. He was so strong. There were 2 consultants. One I would say kinder than the other. He explained Liam had a GBM4, it was inoperable and would be offered chemo radiation for 6 weeks.
Liam asked ‘what after 6 weeks’ the consultant looked down and didn’t want to look at Liam. The nurse then went onto book the chemo radiation. I explained we haven’t decided whether this is the treatment we want yet. It was all so rush rush rush.
I had researched and found a top neurological surgeon MacVoy. I booked a private appointment with him to give us some hope.
When we arrived, Liam was so scared. Liam asked what happens if I don’t have chemo radiation. MacVoy explained well you might be here next year with the same problems. He didn’t say you’ll have 8 months. He explained there was a treatment called Immunotherapy that another private consultant offered.
Long and short of it Liam decided to have the chemo radiation and also had oral CBD. He did well through this. He then decided to go into the next cycle on offer of chemo without the CBD. CBD renews cells that are damaged by chemo and radiation.
He was then put in the hospice and died in April 2020.
The only thing I can talk about here was when he was wheeled outside in his bed for a little while. The sky was so lovely, and the birds were tweeting really beautifully. He held my hand and said, ‘Lis do you think today is going to be a good day’. I said ‘everyday you’re breathing is a good day Liam’.
Nearly 4 years on and I can only deal with remembering the medical part of his illness.
Liam always used to say when he was drunk ‘I’m not going to live long Lis I have such a strong feeling ’I used to say ‘shut up and stop being silly’.
When Liam died I dreamt I was with him for about 2 weeks.
I was so depressed I wanted to kill myself. I have my own beautiful family, but I had this strong pulling feeling I couldn’t leave Liam on his own. He hated being on his own.
Lockdown began in the March and Liam passed in the April 2020. My husband was on furlough and the kids were all home. I think this kept me going.
Mum and dad were offered counselling. I wasn’t. I made sure mum and dad had pictures made of Liam, so he was in sight. Only my husband really was there for me. Friends would call but it wasn’t Liam, and I wasn’t interested. You push people away.
After about a year of not being present at all and working long hours so I didn’t have to deal with the grief I thought about the day that Liam asked ‘is it going to be a good day’ It broke my heart. But then all of a sudden, I thought how selfish I was being I had that day to make it good. Liam doesn’t have that choice. I do!!
“Even now some days I struggle but I have made a routine and I stick to it even if I only do the morning routine, I’ve done something. I feel as a sibling you are forgotten and not seen as it would affect you majorly.”
There wasn’t a day I didn’t speak to Liam. If we were sad, worried, happy, excited we would speak. We’d speak to each other’s kids; we were like an extended family. I don’t really get overly excited anymore, but I feel fully present now in my family which is a lovely feeling and I feel blessed my husband stood by me through this. It couldn’t have made him feel very special at all. I will always miss him and cannot take his number from my phone in hope he might come back one day.
Liam was so special. He made me laugh from birth. We have videos laughing together. He had the most beautiful face and eyes. He was super clever and just so perfect. I feel so blessed to have been able to call him my brother and my friend. Not all siblings have the bond we had. I try to make my children have the same bond and hope they do. I think I miss him so deeply because I was so blessed to have him as my brother for 39 years.
Here’s some tips I would give to others who are grieving:
Give yourself time.
Try to exercise daily as this take some of the heartache pain away and wastes some time in a good way. I found I focused my time trying to stop everyone else not being as deeply as upset as I was when I should’ve been looking after me.
Try to slowly when you are ready put a routine together even if it’s getting up washing your face and making a coffee.
