Being told that you will never wee normally again is terrifying. Most people have never heard of a urinary diversion, and simply cannot imagine going through life without a functioning bladder. Andy North knows how they feel, because he’s been there.
That’s why Andy is kindly helping to launch the Help provide hope appeal. He describes why he feels so passionate about the cause:
“As a helpline volunteer with the Urostomy Association, I sometimes speak to worried patients as they face major surgery. They are already confused and anxious from hearing that they have cancer or some other life-threatening diagnosis.
I know from my own experience that it’s difficult to absorb lots of information in the early days, and patients often leave clinic only to think of a hundred questions before they reach home.
That’s why I think the work of the Urostomy Association is so important. The charity has drawn on urostomates’ experiences, alongside clinical advice (of course), to compile a wealth of leaflets and online resources providing advice and reassurance. I know that stoma nurses like to hand out a Urostomy Association information pack to their patients and point them to the website, as well as linking patients through to local volunteers who have stood in their shoes. Sometimes they just need to speak to someone who has been here and done it.
That’s why I’m asking if you will support the Urostomy Association’s Help provide hope appeal.
After their initial consultations, we know that people are often still worried … about work, about how to tell loved ones, and whether they’ll be able to do the things they love to do. They need time, information and support to help them imagine what their new future holds.
That’s what Urostomy Association and its volunteers are here to help with and why they need your support.
A donation of £25 to the Help provide hope appeal could provide essential information and support to twenty worried patients.
But patients need more than information packs. We know that the best way they can overcome their fears and prepare for their new lives is to ask lots of questions – from their stoma nurses, and from those in the know. That’s where the Urostomy Association’s helpdesk, trained one-to-one support volunteers, webinars, events, private Facebook group and brilliant website are so useful. They can help prepare patients for life with a stoma and reassure them that help is out there.
A donation of £50 to the Help provide hope appeal could help fund a webinar where patients can ask the experts and hear from urostomates happy to share their own experiences.
And, as we know, questions don’t end with surgery. In fact, for many people, it is only once they’ve had their urinary diversion that they consider how to live life to the full afterward. They want to know, for example, when can they drive again, go on holiday, have sex and take up exercise. And that’s alongside practical everyday queries such as managing night bags, avoiding urinary tract infections and stoma skin care.
A donation of £150 to the Help provide hope appeal could help fund the Urostomy Association’s volunteer programme for six months.
We know that life will be different for everyone undergoing a urinary diversion, and we also know that the majority go on to live active and rewarding lives, like Helen who kindly shares her story below. In fact, people often describe their surgery as ‘restoring their quality of life’, and some want to ‘give back’ and become a trained volunteers themselves. I know I did. Helen did too.
Will you support the Help provide hope appeal by making a donation today, and stand alongside new urostomates as they embark on their new life journeys?
The Urostomy Association understands that people’s finances are tight at the moment, but I know they always make every penny count; so whatever you can afford would be much appreciated. Your gift can help with hope at a time when frightened urostomates need it the most.”
You can donate using the form below. Thank you.
Helen’s story
“Three years ago, my life turned upside down with the shock diagnosis of aggressive bladder cancer. As a 53-year-old, non-smoking, fit and active woman with no family history of the disease; it all came as a devastating blow.
I felt like a rabbit caught in the headlights, and experienced such a mixture of emotions, including awful sadness, utter panic and disbelief. It was such an emotional rollercoaster, with which you may well be familiar.
But I was lucky to have a friend who had been through a similar journey. She knew about the Urostomy Association and was so helpful as I went through the bewilderment of surgery. She gave me information on what to expect and how to care for myself in the first weeks after surgery. Her support and array of useful tips was just what I needed; someone to give that personal support and encouragement was a proper boost.
Now I’m the other side of it, I’m just getting on with life. Facing a life-threatening illness makes you think about everything. My husband and I decided that we wouldn’t say ‘no’ to any opportunity. We would say ‘yes’ and live our lives as positively and adventurously as we could.
I’ve got back to skiing, taking my first sailing trip and completed some adventurous cycle rides; I walk my dog every day and swim several times a week, as well as being back at work. After the initial period of adjustment, having a urostomy has become a very easy thing to manage for me and although life is different, I have very few complaints.
The Urostomy Association and associated Facebook group has given me a very helpful ‘go to’ for advice and reassurance.
I feel so thankful that by overcoming cancer and living with a urostomy, I can continue making happy memories, meeting new people, forgetting my woes and realising that ‘I can’ rather than worrying that ‘I can’t’.
The moral of this little story is that we have no idea what is around the corner but, with the right support at the right time, life changing surgery can change our mindset in a positive way, allowing us to seize every opportunity that comes along.”