The Signal Of A Signal Of A Signal

Losing someone is never an easy process. Just five years ago I lost my mother and brother in the space of one year, both to cancer, and both completely unexpected.

I was in Sydney Australia, preparing to perform at the prestigious Opera House, in one of the biggest shows of my life, with Live Transmission: Joy Division Reworked, in collaboration with The Heritage Orchestra. I missed a series of calls from my brother Nick, back in London, to say that our mum had been rushed to hospital but everything should be okay. Nick explained the situation as best he could understand it but wasn’t clear and was nervous. I couldn’t do anything else and so it was back to the hotel. He was just letting me know. Then within a matter of hours everything changed. She was in a coma and I needed to return home.

After significant stress trying to find a flight home, my wife and I were finally able to return. At times like this you can’t honestly focus as much as you wish. Everything felt then and still does like a blur, as if you are going through the motions but not actually experiencing it. As if you are watching yourself from the outside. None of this was made easier by airlines wanting to charge £20k for emergency flights, or my travel insurance refusing to assist, arguing that if my mother was dead they would ‘happily’ take care of the costs, but since I was ‘just returning home’ they would take no responsibility.

Questions that will never be asked

And so home. We landed at 05.00 a.m and after dropping our suitcases off, went immediately to meet Nick in the Waiting Room of the Heart Surgery Ward of St George’s Hospital, as no beds were available in Intensive Care Unit. I saw my mum for the first time since her birthday in January. We’d been planning to go and see her but then I had an accident in Amsterdam and couldn’t walk for months, then work interrupted, always excuses. She’d wanted help with the garden, which we agreed we could all do one Saturday all together. She’d called me just before we left and sung The Sun Has Got His Hat On and really giggled as she knew that it always tortured me when she sang this song to me. I’d sat on the plane en route to Sydney thinking of all the questions I wanted to ask her in a book so she could spend her days writing this at home, to occupy her time and for me to learn more about her life, her dreams and wishes. This was never to be.

Jet lag doesn’t exist at moments like this. She was moved into the ICU the very next day, Belinda her nurse very friendly. Everyone was optimistic that she might wake up at least so we could say goodbye as we were all aware that she wasn’t going to survive this. They had found perforations around her entire abdomen from cancer, which had let faeces invade her body and other organs, making her tummy enormous. This would explain her large tummy over the last few years. This cancer had then aggressively spread to her lungs, a tumour in her stomach, to her bowels, to her rectum, brain, everywhere in fact. They had tried to close up some of these holes during the operation but didn’t think she would make it through. Indeed, they were all surprised she had survived this long.

She lay there barely recognizable, all bloated with feeding tubes in her noise, a massive plastic tube in her mouth, a strap to keep her mouth open, her tongue a red blob, sore and uncomfortable looking. Her arm and neck were enormous, apparently because of the water retention.

Each day was a repeat of the previous day. We would meet Nick and spend about two hours talking to each other, to the nurses, to the doctors, taking turns as only two visitors were allowed in at a time which was frustrating.  They stopped the sleeping medication in the hope that she might wake up and on the first day she kept opening her eyes a lot more but wasn’t focusing at all, with no signs of recognition at all. I played The Sun Has Got His Hat On several times directly in her ear from my iPhone in the hope that it might trigger a reaction but sadly nothing.

Bidding farewell to mum

On the Friday we had to meet the chief doctor, Dr Newman and sit in the seminar room and talk about basically switching off her life-support systems. I cried so hard. I couldn’t believe I had to make such a decision about my own mum. When alone for a moment I whispered to her that I loved her. It was so hard. It’s not something we would ever say to each other. Love was shown through action, not through words.

The doctor said it could be between 30 mins and 10 hours until she passed away. In reality it was from when she was disconnected from all the machines at 13.00 until 19.15. Her breaths got faster, her brow furrowed when she was clearly having more trouble breathing. The radio played Queen Don’t Stop Me Now, Aha, Madonna, Roy Orbison, all kinds of pop songs in the background. I felt so tight in my tummy. I would lean in close and listen to her breathing, her wind pipe opening and closing. Around 19.00 her breathing became more troubled, she began to slow down. That was the last breath…no…that was. It was horrendous, so painful. Each time there was a long pause, and then another breath…then another. Until at 19.15 she completely stopped, whilst we still held her hands. I looked at Nick on the other side of the bed and he looked as distressed and panicked as me. A disgusting black fluid began to pour out of her mouth. A nurse came to siphon this out but Tom came back in and checked her pulse and said that she was gone. We all sat there despairingly. It wasn’t transcendent, it wasn’t beautiful. It was thoroughly horrendous and traumatizing. I will never forget that moment.

A year later the process was pretty much repeated. The details are far too painful to recount here, but suffice it to say that my brother was diagnosed with Oesophageal cancer, and was dead within three months. There were no warnings, nothing to prepare him for this. After my mum died we had spoken on the phone every single day of the week. After diagnosis I was with him each and every day to ensure he was okay, his cats that he adored were fed and he was taken care of. I was at the Royal Marsden Hospital every day to visit once he was admitted. Tragically he spoke about ‘when I go home’ all the time, whilst I was clearly aware that this would never happen.

When death reunites family

And, of course, he was never to return home. I put his cats up for adoption, cleared out his flat in Battersea, and took apart furniture we had only constructed less than a year earlier after the landlord had kicked him out of the house he had lived in with my mum for 55 years. He died on 1st December at Trinity Hospice in London and his ashes sit next those of my mum in a Sanctum 2000 vault.

This is probably the most personal post I have ever shared online and even now I’m censoring myself with regards to the complexity and discomfort of these experiences. I still find it so challenging to even watch any film or TV show where they speak about brothers, it’s that raw still. And I doubt it will ever lessen.

And so, what can I do in return? A small gesture really. And something that you can help with too. I recorded an entire new album for Touched Music, The Signal of a Signal of a Signal, as part of an elaborate 11 album boxset, and a compilation album. The scale of this release is quite epic. New albums from the likes of The Future Sound of London, Locust, Mick Chillage, a compilation featuring material from The Orb, Richard H Kirk and so many more. The special wooden box set sold out within just ten minutes last night. Martin Boulton, who runs the entire label, told me today that so far the releases on his label have raised around £100,000 for Macmillan Cancer. How truly amazing. Martin is a shining light for such support!

Macmillan Cancer Support

Macmillan Cancer Support was founded in 1911, and is one of the largest British charities and provides specialist health care, offering emotional, physical and financial support to people affected by cancer. It also looks at the social, emotional and practical impact cancer can have, and campaigns for better cancer care. Macmillan Cancer Support’s goal is to reach and improve the lives of everyone living with cancer in the UK. Every penny from sales of these releases goes towards this supportive network.

So, not only do you get a brand new album recorded by me for a very low price, but you also get that warm fuzzy feeling that you’ve done something positive for others too. Please do your utmost to support this release and others on Touched Music.


Buy The Signal of a Signal of a Signal here.

12 Comments

  1. Chris Carbinax

    I’m so sorry to know you’ve had to go through this Robin. Words seem too crude and ineffective to convey any true depth, but I read, and I cried, when thinking about my own mum and Her frailty, and as a fellow musician on Touched, I leave this as some semblance of solidarity.
    Love is stronger than death, and we unite to resist and defy, in our many multi-faceted ways, until the day comes when cancer will fear man.

    • Thanks for your very tender response Chris. I’ve been told countless times that ‘time is a great healer’ but sadly I feel the pain just as strongly, if not more so. As if it’s etched into my skin. Every single day I just wish they were back here with me, especially my brother. Keep making music too!

  2. Esther van den Bergh

    Heartbreaking. Traumatic. And these never leave you, those traumatic experiences. E.g. like you, when you see movies about brothers and cry every time, I cry every time I see movies about families coming together or being ripped apart. For this is my youth and formed my life and also my personality in those years, being without family for such a long time just when I needed them most. Things like this never leave you.

    The pain of losing a loved one (and we both lost more then one) is horrific and always present. Somehow I found that I did actually gain some things through loss as well but it will never be enough to compensate these losses. And time being a healer? I don’t think time heals. It makes that trauma’s find a place in your life and thoughts, heart and soul, but it never will be healed. Maybe you find a way how to handle it somewhat better but I don’t think it will ever be okay again.

    My heart goes out to you, lots of love, xx Esther

    • Thanks for your beautiful and sensitive response Esther. It’s hard especially as most of us keep all this buried under the surface, under the bonnet of the car almost! It’s certainly of value to share such feelings at times of course. Here’s hoping that 2020 brings more happiness to you too! Love xx

  3. A sad and heart-breaking story Robin.
    For me it was maybe extra upsetting to read, as it was in many ways similar to the death of my mother (in 2011), and her partner which died 3 years before her.
    Both died of metastatic lung cancer, and in both cases the period from diagnosis to death was very short.
    I was with my mother when she died, and it was almost exactly like your experience, her breathing getting increasingly worse, until it stopped, and she had a last spasm, emptying the fluid that had filled up in her lungs (and it was very traumatizing).
    I hope that time will help for you, I had some issues after the death of my father as well, 19 years earlier, and they came back hard when my mother was diagnosed.
    But I think it is helping now, maybe I have processed the experiences better now, and I hope it will not come back again as strong as last time.

    • Thanks for your honesty Roger. Loss in this day is impossible to describe unless you’ve lived in and I don’t wish for anyone to have to go through these experiences. It’s informed what I do and the way I live my life in a much more positive and encouraging way. I have always tried to be an optimistic but after these experiences try even harder.

  4. Photini

    Sending you and family much love.

    • Thank you so much! Same to you for this festive time! 😍

  5. Ray Treacy

    Sorry for your troubles Robin its a disease that is impacting so many families and Christmas is such a painful time with loved ones absent. My cousin Ann died last year aged 52 she was also from Battersea. flicking through an old photo album of us together in Ireland as children its hard to believe she is dead and so many years have passed.

    Thinking of you this Christmas and wishing you a peaceful new year.

    Ray

    • I’m sorry to hear your story Ray. Sending you positive thoughts for a great Christmas and safe entry into 2020!

  6. Kirsten Gabriels

    Sitting on the train with tears in my eyes… Sending you lots of love and strength!

    • Thank you and more so on this day. Lost a good friend to suicide, at the very same time I’m missing my family. We all need love more than ever x

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