Being filmed helped me voice my personal opinions about cancer services - Bex Smalley

Bex Smalley, Christie patient and patient representative 

Bex Smalley

2015 was a big year for me as I celebrated 10 years in remission. This made me stop and think. I wanted to give back more than my annual fundraising events. So I started looking online for a more hands on approach. I wanted to help more. 

I started off by volunteering for Macmillan, leaving reviews on books and leaflets all based around cancer but I was looking for something much more hands on. Then I received an email about an organisation called Manchester Cancer and who were involved in something called a Vanguard. When I read more about this I found out that one of the aims of the Vanguard was to improve cancer care though early diagnosis and prevention around the Manchester area. I immediately knew it was something I wanted to get involved in. 

Since getting involved, I’ve had a busy time. I have been involved in lots of meetings and was asked to be in a video they were doing to show at a big eye opening event. 

The Greater Manchester Cancer Vanguard event was something that I felt very privileged to be a part of. It is very much centred on making positive changes to cancer care in Greater Manchester. To be in a room full of medical experts, chief executives and other patients who felt like me was daunting at first, but every person there made me feel welcome and an equal. They kept saying that patients are at the heart of these new services. 

Before this event I had no idea of the hard work that was going on to try to improve the system. Listening to the consultants and specialists speak with such passion for change made me very hopeful for the future. 

Being filmed helped me to voice my personal opinions about cancer services and to share my own cancer experience. 

When I was 17 years old I was diagnosed with Hodgkins Lymphoma. By the time I reached The Christie I was informed that it was a stage 4 cancer (the most serious). My left lung had collapsed and I had 4 tumours. 

One of them they classed as ‘bulk’ which they explained to me meant that it was larger than 13 centimetres (if my memory serves me correctly). 

This had all happened because I wasn’t taken seriously by my GP. I had visited several times over the course of around 2 years, but wasn’t referred to The Christie until the end of that period. I believe that this delay meant I needed to go through aggressive chemotherapy and radiotherapy treatment. 

I cannot fault the efforts of The Christie, nor the treatment given to me at the time. However, I have since found out that they no longer use the chemotherapy I was given as they have found a less invasive version. But this is just a sign of how treatment is improving. A lot of chemotherapy leaves people with side effects that they will suffer with for the rest of their lives. A common one being infertility, which is something I was warned about numerous times. However, in 2013, against all odds, I managed to welcome my daughter, Georgie into the world. 

Although I was incredibly lucky to have my daughter, the problems I faced were all due to my late diagnosis. This along with better patient aftercare is very close to my heart. 

Surprisingly, I found that after my treatment was when I needed help the most. I’m very pleased that these are some of the issues that Manchester Cancer and The Vanguard want to improve, especially early diagnosis, as this is so important in the most important thing - survival!

Being involved in such a large movement is more than I could have hoped for just a year ago and I feel very privileged to be a small part of the changes being made. It also gives me a chance to give back to the hospital, people and charities that helped save my life. 
If we can galvanise the system through experiences like my own, it almost makes my late diagnosis worth it. 

Helping you to help yourself – our new web project will provide patients with an aid to managing their life with cancer - Dr Michael Leahy

Dr Michael Leahy - Consultant Medical Oncologist

Dr Mike Leahy

I'm delighted to announce the launch of a new project at The Christie which will provide patients who are living with advanced cancer access to a self-guided care plan to run alongside any medical treatment for their cancer.

The inspiration for this project came from the number of patients who kept asking consultants like me if there was anything else they could do to help themselves live with cancer.   

Alongside the modern up-to-date medical therapies being provided at The Christie, many people are interested in what else they can do to help themselves through diet, exercise, complementary therapies, talking therapies, mind and spirit and other activities.

A little research among patients attending one of our clinics demonstrated that many patients are already seeking out information on self-care for themselves, with many trying out something that they feel will be of benefit - from dietary changes to counselling or aromatherapy. However, our patients have told us that they feel there is more we could do in terms of giving advice and helping them make wise choices amidst the many therapies or products on offer that make claims of benefit.

It may surprise readers to know that there is increasing research showing that a well-rounded health and wellbeing programme focussing on improving and enhancing general health can have a significant impact, not only on quality of life, but also on survival. It seemed to us that there were things that people were missing out on that they could do to help themselves and we decided that, as their oncology team, we ought to be giving this more attention.

We applied for funding from the Manchester Cancer and Macmillan Innovation Fund for a one year project to develop a programme for patients with advanced stage cancer.  We were successful in our application and our project manager Liz Islam, started work in September.  We now have a year to construct a pilot programme, develop an interactive website and evaluate it with a group of patients. The working title for this project is PlanBe. 

The reason behind the name is that getting cancer is no-one's Plan A, but this programme is much more than a second thought - it is about being as well as you can for as long as you can; about being more in control of what is happening to you; about being more in the moment; about the idea of being responsible for your wellbeing.

We are really interested in people's comments and suggestions to help us in this project. What other activities do you participate in besides your cancer treatment? What have you found that has been really helpful, or not so helpful?  And, if you are living with advanced cancer, what help and advice about your PlanBe would you find useful? We'd love to hear from you about this project and what you think, so please email the project team at PlanBe@christie.nhs.uk