Penny Brohn

I was a bag of nerves, full of apprehension and anxiety as the car approached the entrance to Penny Brohn. Was I really ready for this? A course on cancer in a specialist cancer centre, it all felt too ‘cancery’ for me. Are we all going to sit in a circle and cry about our illness? Was this going to make me dwell too much on how bad I have it? Would I think about anything else other than cancer for three days? This all feels far too intense. I’ve made a mistake, maybe I should turn around now before I go in, come back when things feel a bit more desperate. After all I’m largely fine aren’t I? Admittedly in recent weeks I have been frequenting a&e more times than I would care to again, contorted and squirming whilst multiple doctors and medical staff wrestle with my useless veins in a desperate attempt to cannulate them before flooding them with morphine to suppress the pain. But I’ve pin pointed what’s been causing this now and the visits seem to have stopped again thankfully. My latest scan was good, yes my tumour markers are rising but no one apart from me seems concerned about this so everything is great. Surely then this is the wrong time to come here.

I knew of Penny Brohn having lived in Bristol for 12 years. I would often cycle passed it as it sits on one of Bristol’s most picturesque cycle paths along the Avon river. It was the perfect tonic to unwind when my head was in a spin.

I even went inside once prior to diagnosis for a Women in Business conference but that was a very different scenario to this. This time I was one of them. A cancer sufferer, the person benefiting from the fundraising rather than contributing.

I didn’t want to do this, I wanted to go to the music festival my best friends were going to, I wanted to be in London at work, I wanted to reverse the clock two weeks and be back in Kerry ambling solitarily along vast desolate beaches drifting far away from the realities of life.  Yes, this was the wrong time to come and so I secretly decided before I entered I would definitely not stay.  Still I had friends arriving I wanted to say hello to so I would pop in for a quick cuppa whilst I racked my brain for the least feeble excuse before I left.
 
‘You’ll be fine Sophia’ whispered mum as we stood at reception, obviously able to sense my apprehension ‘after all if you really don’t like it you can always head back to London or go and stay with one of your friends in Bristol. Don’t worry.’ She was right, I had options, there was need to get myself in such a tizz, after all this was supposed to be a retreat.

‘Hello Sophia’ said a voice to my right. Lindsay! What’s was she doing here? Of course, she works here. I did know this but didn’t really think I would see her. Lindsay was a good friend of my old netball coach. We’d spent many fun evenings out together, she even came to my party last year. All it took was a familiar face and instantly my nerves settled. I knew deep down inside I wasn’t really anxious because it was a cancer centre, this was just my personality. Ever since I was a young child I have always been shy and unsure in unfamiliar surroundings. I needed to feel comfortable before I could jump into anything feet first.
 
Mum and I decided to have a quick cuppa in the restaurant before she left. We were only sat a short while when in the distance another familiar face fast approached enthusiastically waving my way. Helen!!! My wonderfully funny, fantastically brilliant fellow bowel cancer friend. We speak most days online, often to have a bit of a bitch and a moan! To see her again was such a joy. She was here with her mum who was staying with her throughout her course. Then followed Lizzie and Bridget, two other online friends who I met once before at a lunch and Kim with her fabulous hair closely resembling a purple allium. Finally at the back of the group was the lady I was most excited about meeting, Karen. When I was first diagnosed she was the first person to respond to my cries for help on the online forum. In the last 18 months we’ve spoken most weeks and she’s been a huge support for me. I owe so much to her enthusiastic words of encouragement, particularly during the darkest of tough times. Her willingness to offer support to anyone who reaches out has been a real inspiration and something I try to emulate where I can.
 
These ladies were Penny Brohn regulars and had therefore done the prerequisite induction course I was enrolled on. So following a few hugs and a catch up over a several cups of tea I departed the group to unpack and join my group for the introductory tour of the centre.
 
As we meandered around the building I was struck with how incredibly peaceful and calming the centre was. The lady who showed us around explained that there is a real emphasis on expressing creativity at Penny Brohn with an arts and crafts room and music room available to us any time of the day. Furthermore there was a room prepared for cookery demonstrations, a library, a gym (if you were feeling energetic) and a spiritual space allowing people a time for quiet contemplation and reflection.

I was impressed, this really was the kind of place people could allow themselves to get lost in both literally and mentally. As the guide continued I could feel my shoulders drop as I felt greater and greater at ease, in the back of my mind maybe I worried this may feel either too clinical or like a hospice which I just wasn’t sure I was ready for but it wasn’t like that at all. It really did just feel like a beautiful retreat.

It wasn’t until we entered the Garden Room when things changed and found myself frozen solid and overcome with emotion. Whilst the rest of the group admired the high ceilings, large windows and flower arrangements, I realised I was stood in the exact spot in which I was sat only five years ago for the Women in Business conference. The event flooded back so vividly. I remember being sat next to a lovely chatty lady who explained that she was a solicitor. When I told her I sold hospitality businesses she explained her family owned one of the major nightclubs in Bristol. Of course I knew the club and explained to her over a cream tea that my friends had tickets for a big night there next weekend but I couldn’t go because I didn’t get a ticket in time. She said she would sort it for me and arranged for tickets to be left at the door. I was thrilled. These were the kind of strings Ben would pull all the time but I’d never managed to do this for myself.

The conference itself was largely focused around how society could adapt to create a more equal workspace for men and women, lots of suggestions were raised from women but also men in leading positions within their business. It was really quite an inspiring event. And then came the presentation about the centre hosting the event, Penny Brohn, what it does and how it benefits people. The speech was given by a young, stage IV bowel cancer patient. A lady who literally looked and sounded like she had been to hell and back and was so thankful for the sanctity Penny Brohn offered her. I remember thinking she was only a few years older than me, how awful for her, she had a young son and talked about the difficulties of explaining to him what was happening to her. I remember feeling overcome with sadness at her story, it would have been impossible not to. I left a donation and remember thinking how desperately I hoped someone could help her.

As I stood there I wondered to myself where she was now. Was she even alive? The statistical probability was that she wasn’t but I didn’t want to ask. I didn’t want to know.

Fortunately I only went in that room the one time. I knew it would be too much for me to spend too much time there, it all felt too surreal. I allowed myself a moment to recompose myself before I ventured outside into the gardens.

The guide explained that Penny Brohn has 36 volunteer gardeners and what a fabulous job they had done. There was so much colour and variety, there were roses that actually smelt like Turkish Delights, I’d never before experienced such a thing. It would be impossible in this space not to be awestruck by the beauty of nature and the healing powers it yields. Yes, I knew I’d be spending a lot of time out here in contemplation whilst completing my daily meditative practices.

Following the tour the group sat around a large communal table ready for the first meal of the day. Penny Brohn recognises the importance of eating well with the three key rules being; variety, colour and moderation. There was also a recognition that where possible patients should avoid unrefined sugars. All meals were based around these principles. The food throughout the three day residency was very healthy but also diverse and largely very tasty. I certainly never felt hungry.
 
And so to the course itself. For any patient looking to participate in a residential course at Penny Brohn there are two three day residential courses you must complete first; Living well followed by The Approach. As this was my first time I was enrolled onto the Living Well course.

For confidentiality purposes I won’t write about the individual people I met in my group. This is a safe haven for all of us and their stories are not mine to share however what I can say is I was struck by the diverse age range, types of cancer and stages in the group. The mix generated an interesting dynamic that further demonstrated to me just how vast and problematic cancer is.

What I hadn’t appreciated before I arrived was how welcoming the course was for care givers as well as patients. In retrospect I should have invited my mum. I think she would have really benefited from what we were being taught and the story sharing. I’d really felt I’d missed an opportunity not bringing her along, hopefully if I attend the next course she can come with me.

Cancer has a remarkable way of making patients feel completely out of control. We are at the mercy of our disease. We do not know if we will respond to treatment until we have it and we live month by month based on scan results and blood tests. It’s gruelling, debilitating at times and for many of us there is an overwhelming loss of control with the whole process. This course is designed to help empower patients by educating them about ways in which we can make changes in our daily lives which may help with our overall response to treatment, improve outcomes and manage side effects.

The course was inclusive and interactive which I consider very important. Patients and care givers could interrupt and ask questions any time. We were provided with information on what diet we should try to follow and the importance of regular exercise (and what that means for people who are perhaps less mobile than others). We were taught breathing exercises and meditative practices to help settle our nerves and rebalance ourselves. We also explored the importance of relationships, the psychological challenges of cancer and the impact on our spirituality.

For those of you who know me well you’ll know that I have obsessively educated myself on my disease over the last 18 months, making every attempt to understand my type of cancer, treatment options, complementary treatment options, diet, exercise and the best way to control the psychological traumas this illness has put me through. In light of this I must be honest and say that I didn’t personally learn a huge amount from the course in terms of the content relayed to us but had I have had more confidence to look more closely at this course when I was first diagnosed I can see how beneficial it would have been for me. I urge anyone who knows anyone with cancer to at least give this place a thought. It’s a nourishing place for the body and soul and I really believe every patient should try to experience it. What is particularly exceptional is that unlike most retreats this course is free and everyone is housed in a beautiful en-suite bedroom for the two nights. I challenge anyone who has been to Penny Brohn not to admit it has enhanced them in some way.

For me, whilst I didn’t necessarily learn a lot, spending time with patients in very different situations to mine was enriching. I enjoyed hearing the stories and sharing my own. It’s actually quite wonderful to be surrounded by people who just ‘get it’ whatever that really means.

And of course I got to spend some quality time with my true bowel cancer friends. I must confess with all the healthy eating we couldn’t resist breaking out on the second night for a swift glass of vino at the local pub and a proper chinwag but who could deny us such luxury after all we have endured together.

When I entered the retreat I was riled by another recent press release blaming the rise in young people with bowel cancer on unhealthy, sedentary lifestyles. It does bowel cancer patients such an injustice to read that they are to blame for their illness. Most of the patients I meet are sporty, eat well and didn’t do anything too self destructive. And even for those that did that did that shouldn’t result in a diagnosis of stage IV cancer at such a young age. There are much bigger factors at play here and it’s lazy reporting and very upsetting to blame patients without an acknowledgement for the bigger picture. It’s no wonder why bowel cancer uk raises such dismal amounts in comparison to other cancers.

During my time at the retreat I was able to give some real consideration in to how I plan to change this message and provide greater support for existing patients. A few months ago I came up with an idea that now has the approval from Bowel Cancer UK. I don’t want to say too much yet but watch this space. It is going to involve a lot of work but it’s hugely exciting and I can’t wait to share it with you once it’s ready.

In the meantime, if you or a loved one suffers from cancer get yourself to Penny Brohn and experience this course for yourself. I promise you you won’t be disappointed.