rivers2cross

As it’s bowel cancer awareness month, I thought that I would try and articulate a little of mum’s cancer from my perspective. I know that relatives can be regarded as carers, but that certainly didn’t apply to me with mum, who was very independent throughout her cancer until the final few months. She remained a wonderful mum to her three children.

Mum was great. I remember finding out that she’d been for an appointment after I’d been on a rare weekend break to Switzerland. I wasn’t told as she didn’t want me to worry whilst being away. At this point nothing was known, certainly not by me, as to what the problem might be. I ended up going to pick her up from the hospital after her next appointment when she’d had an endoscopy. I presumed it was all normal and even when we were kept waiting for some time, nothing sinister or untoward triggered inside me. We then had the fateful meeting where she was told she had bowel cancer.

It came as a massive shock, and I could visibly see mum being hit by an overload of information. However, she was incredible and did what she was always so good at doing, which was to face what was in front of her and what needed to be done to get herself fixed. This steely determination was certainly a source of great strength to me, and helped me to focus on what was ahead and do whatever I could to help and support. I have a brother and sister who were on hand and quite amazing over the following 4 and a half years.

We worked well as a team. Mum had daily sessions of chemo to shrink the tumour for the operation. Much of these trips were done by my brother and sister, which meant I could carry on running the one-man business. I would do some of the afternoon and early evening trips. I remember the day of the operation in September 2012. It was a lovely autumn day, but trying to focus on work or much else was difficult knowing that Mum was undergoing major surgery. Thankfully that all went ok. It was at this point that attention was turned to her lungs, and I had no idea about secondary cancer or what other mountains Mum would have to climb. Looking back there was a kind of innocent naivety about me at that time. Whilst I knew that the cancer could come back, I presumed the lungs was a minor procedure to clear things up and that Mum was for all intents and purposes cured. It was at this time I began fundraising, and even chose the Beating Bowel Cancer Charity (it has since become part of Bowel Cancer UK) because of its name, which I thought was perfect for Mum having beaten the cancer…

Early 2013 Mum had two lung procedures in the space of a couple of months. I say procedures but these were big surgeries. Mum was a very fit and active 76 year old at this point. It was a worrying time, but Mum came through and we then had about 18 months of no evidence of disease. Life was normal. Mum went back to her part-time job at the doctor’s surgery and riding her beloved horse. I had wonderful relationships with both my parents. I think that during the years after dad died in 2009 I got as close to Mum as I ever did. I used to drive her up to the other side of Oxford to see my sister and her granddaughter Anna regularly. These trips gave us the chance to have lovely chats, usually giving me the chance to talk about my life and what I was striving for. She was a great listener and would always encourage me and be positive in what she said. This is something that I have massively missed since her death, and perhaps one reason why I ended up seeking help last year.

November 2014 was when the cancer came back on her left lung. I remember being half way through doing the Live & Times book. This serious turn of events certainly changed my approach to the book and life in general. I have to say though, although Mum kept a diary and meticulous notes of her treatment, it wasn’t something that she spoke about much. As I said it was all about getting past about what was in front of her. By this point I was a lot more aware about bowel cancer, but it sounds strange me saying that the knowledge I now had I didn’t really apply to Mum’s case. I don’t know if that makes any sense. I don’t think we ever talked staging when it came to Mum or incurable cancer. It probably helped me stay strong, but I know how different this is for each and every one of us.

Mum had lung surgery in early 2015 and that went to plan. I carried on with my book. Things were a little uncertain with Mum and in the autumn another nodule on her left lung was spotted, so the decision was that the lower lob of the lung would be removed after Christmas. Lives & Times was published on November 27th, 2015. I remember the excitement of the publication day was decimated in the early hours of that day when my brother rang me to say Mum had been taken in to hospital. Investigations found two lesions on her brain. Life changed once again and it was a time of worry and uncertainty. The book and the fundraising were not quite so important for a while.

I think being inside this bubble meant that we all just did everything that was needed to help mum and get through. Mum was stabalised with the help of medication and steroids, and the lung procedure went ahead in early 2016. She also underwent CyberKnife treatment for the brain lesions. There’s always a wait, I think a couple of months, before you know if the CyberKnife has worked. Mum was once again back riding her horse “off road” and very frustrated at not being allowed to drive. Unfortunately the seizures began again – one of the lesions didn’t respond to CyberKnife – and during May Mum went to Cornwall for a week with friends. If you’ve seen the photo of me sitting with Mum and the dogs that was then and my favourite ever photo of me and Mum x Things were put in place in case she had any seizures, but it was a lovely week for her and I collected her and brought her home. Next up would be the new treatment plan.

Unfortunately just over a week later before anything could happen, Mum had the big final seizure that put her in hospital, paralysed down one side and her speech impaired. It’s hard to recall how I felt during this period. Mum responded to steroids, regaining her speech and some movement, and the new routine in life was seeing her in hospital every day. It wasn’t until early July after she had been there for a month or so, that we were given the news that there was no more treatment and it would be end of life care. Looking back it never really sinks in. It was devastating and even her oncologist broke down at the hospital.

The final part of Mum’s life was in a nursing home for end of life care, which was for about 5 weeks as it transpired. I think we hoped that Mum would have longer than that and that we would be able to take her out on nice trips and do things. Perhaps we weren’t really given much support as to what to expect during this time. I had no idea of the difference between end of life and palliative care. Mum’s end of life care meant that as the drugs were reduced the symptoms got worse. She could barely speak and was paralysed again. At one point I remember stupidly saying to my sister that having been through loss with losing Dad meant that I was better prepared this time. Utter rubbish of course I was soon to discover. We were at her bedside when she died on August 29th 2016, one week after er 80th birthday.

In the five and a bit years since, life hasn’t been easy. I didn’t really address my grief and certainly not process it. I threw myself into doing The Record, my third and perhaps final charity book. It took me three years to complete, and I probably pushed myself and my expectations about it way too hard. Once it came out and didn’t match the fundraising success of Lives & Times I struggled with disappointment, when really I should have been so proud of what I’d achieved. That became a pattern for me in life for the next couple of years. I was lonely, incredibly hard on myself, and couldn’t find any way out.

The back end of 2021 saw me seek medical help for these mental health problems. Not all down to bereavement, but certainly one of the main factors. Since then I have pressed reset and have learnt to accept and deal with my levels of anxiety and depression. I am in a much better place than perhaps I have been in years.

I must finally mention the friendships. Over the last decade I have made so many new friendships with some utterly amazing people both in the cancer community and through the music of The Alarm. The genuine friendship and kindness is something that I find hard to put into words, but rest assured it means such a lot to me. Absolutely life-changing…

April 2022, bowel cancer awareness month, I am writing songs about poo (quite apt some might say 😄), selling teddy bears for cancer causes, going back to watching live music and enjoying Prince being on great form well past his prognosis. The sun comes up and we go again x