Since being diagnosed with melanoma, Imogen Cheese has dedicated her life to bringing patients together

How were you diagnosed with melanoma?
I was diagnosed on 11 June 2013. It had actually taken over 10 months to get to that point. My main melanoma came from a mole on my back that I had been concerned about for some time, but that the dermatologists who checked it thought was innocent. After I repeatedly asked to have the mole removed it was eventually shaved off (incompletely) and just over a month later I was informed the mole was melanoma. At that point I wasn't really aware of what melanoma was. The day I was diagnosed and everything that happened that day will remain with me forever. Not just as a physical scar – but an emotional one too. I changed that day as much as my world did.

How did you cope with the diagnosis?
It was devastating – we expected and were advised to expect the worst. I was shell shocked and scared for a long time. I turned to online melanoma support groups and started to write my blog about my experiences. I have found writing about my experiences cathartic – like a therapy it has helped me process my feelings of anger, uncertainty and the loss of hope I have felt at various times.
What have you been told about your prognosis?
Immediately after diagnosis I was told my prognosis was bleak – 50 percent chance of surviving five years. But I changed my diet and lifestyle completely and am committed to fighting melanoma with every cell in my body to ensure that I am still around to see my children grow up. Three years after diagnosis, I am still here, fit & healthy.

What treatment have you had?
Surgeries only and until the melanoma progresses internally & returns I am not eligible for any treatment. I tried to access a clinical trial but unfortunately was not able to. I am like many other melanoma patients living with the uncertainty of it returning – watch and wait.

Are you happy with the NHS care you have received – could any aspect have been improved?
Many aspects could have been improved – certainly in the early days after diagnosis. The communication and speed of actions was poor and the lack of information given to me at the time was disappointing. I have since transferred my care to another Trust and feel much happier about my general support system.
Were you given any information on clinical trials investigating new therapies for melanoma?
I was not offered any information – I had to do my own research and ask about what was available to me. I believe that all patients immediately upon diagnosis should be told about clinical trials, how they work, what ones they might be eligible for and how to go about finding out how to get on to them.

Would you consider taking part in a melanoma clinical trial?
Without a shadow of doubt – if the trial was a well-designed trial and the benefits outweighed the risks and potential side effects I would.
Has melanoma had a significant impact on your lifestyle?
Completely. After diagnosis I looked online at what else I could do to live longer and I have completely altered our family's diet – full of fresh antioxidant rich foods grown organically at home where possible, I no longer eat red meat, I drink green tea, take Vitamin D supplements, exercise daily and have removed as many toxins and parabens from the products we use daily as I can.

Do you think the depth and quality of information offered to melanoma patients in the UK is adequate?
No, not yet, not at all hospitals. Some are better than others, but the discrepancies in care are too great.
What do you think are the key challenges facing patients with melanoma in the UK?
Getting the right information so they can make the right choices quickly. Time and acting quickly can make all the difference for patients. Melanoma still isn't getting diagnosed quickly enough and too many patients are waiting too long for scans, results and information that should be made freely available for them.

Could the pharmaceutical industry be doing more to help patients?
They could provide more financial support to organisations and charities that are invested in sharing information to patients. It is in the patient's best interest to be informed about clinical trials and many more would join the trials if they knew what ones were open and how to get onto them. I recently organised the first ever Melanoma Patient Conference that provided patients with the opportunity to connect directly with each other and the medical professionals treating us. During the day we discussed clinical trials and all delegates left with a booklet detailing all studies for melanoma in the UK.

What prompted you to start writing your blog, Melanoma Rollercoaster?
I felt alone and scared. Everything had and was happening so fast, yet I was updating family and friends individually daily and it was exhausting. I was worried I would die and my children, who were just five and seven at the time, wouldn't know what really happened. So I started to write the blog – as a journal if you like – a log of what happened to me. It has grown and changed since then but it will be something my children can read when they are older so they can understand more about how melanoma has become such a huge part of my life.

What inspired you to organise a conference for melanoma patients?
When I started to write my blog I thought I was unique, alone and that what happened to me was unusual. Gradually over time people started to share my blog and before long I was getting messages from other patients from all over the UK saying that they too had been failed or fallen through a loop in the system somehow. There wasn't a platform in the UK that would enable this growing number of patients to learn, to share and to work together to improve our outcomes. So I decided I would set one up.

Have you received any feedback from the conference?
The feedback has been amazing. I knew patients wanted and needed the conference to happen – but I hadn't really realised how much of a relief it would be for them once it had been set up. Every single patient that attended wants to attend a conference every year – so much happens so quickly with melanoma that it makes complete sense for this to become an annual event. The medical professionals that attended were also extremely positive about what had been achieved. This conference was long overdue, but has now provided this starting point where finally together we can work towards improving how melanoma patients live after being diagnosed.
What message would you give patients newly diagnosed with melanoma?
Don't be scared to ask and question. Attend your appointments with a written list of what you want to know at the end and run through that checklist before you leave – ask yourself if you have been given all the information you wanted to be given. There is hope now for melanoma patients – more than there ever has been. The treatment options have improved so much over the last three to five years that there is this chance that a melanoma diagnosis isn't necessarily a death sentence anymore. Things are looking more optimistic – but it's a slow process and change won't happen overnight. Hopefully having a Melanoma Patient Conference in the UK will provide the newly diagnosed with the opportunity to learn everything they need to about melanoma in a safe and friendly environment.
What is your greatest hope/fear for the future?
That patients can now finally be fully involved in the discussions about our care, and about the treatments and trials available for us. For too long patients have just been token gestures on panels. We attend but our voices aren't heard. We express our opinions but they are often discounted. We should be fully involved and there shouldn't be just one or two of us. To understand patients, you need to listen to the voices and experiences of the many.

The problems we face are not always the same and the treatments we receive so different. I hope this changes. I know that after the conference many medical professionals left with ideas and plans to implement changes within their own teams – changes that came out of patients' experiences, that the professionals hadn't considered, or even been aware of until they listened.

Patients have to live with this disease. We experience this monster from the ground floor and we are really committed to working alongside pharma and medical professionals to ensure that we live longer and live better with melanoma.