The power of the ‘patient voice.’

The power of the 'patient voice.'

This week has been an incredibly busy, but extremely satisfying one. On Tuesday I was the guest speaker at St Georges Hospital in London, where I was invited to talk to a selection of staff and patients about my personal journey and  how it has affected my life. This was a fantastic opportunity for everyone to learn from each other, and particularly to help staff understand things from the patient perspective. This particular engagement meant a lot to me as of course it is my own hospital, and an opportunity to engage with the staff in a very different way to the normal patient/Consultant relationship. All of the staff had read and heard about my work, but few had actually seen me present live. Patients had also been invited, all

Can there be too many charities?

Can there be too many charities?

  I think you would have had to be living underground, for a few weeks not to have heard about the Ice Bucket Challenge, which I wrote about last week. In fact this week seems to have been even busier on that subject, with all channels of social media full of people pouring water on their head  in the name of charity. Of course, we had the side show arguments about who owned the challenge and who should benefit from the cash and the awareness, but this got me thinking even more about our perception of charities and how and why we support them. One of the things that I experience when I meet people who have been through something as life changing as a cancer diagnosis, is a desire

Fundraising and the #IceBucketChallenge

Fundraising and the #IceBucketChallenge

Normally when I select a subject to write about I try and choose one that is rarely discussed. But today I have broken my own rule by selecting the Ice Bucket Challenge. I am on social media a lot, and this is the one subject that has dominated my feeds this week. I have even read many pieces in the press about it, so I thought if I can’t beat them I will join them, and add some of my own thoughts to the debate. Firstly I have to declare, that I have my own fund within my hospital, which I raise money for on an ad hoc basis, to purchase specialist equipment for the ward that looks after me. There are no admin costs to run the fund and I discuss with

Work can be a positive focus!

Work can be a positive focus!

Despite it being seven years since I have been unable to work regularly, I still find it strange to be able to take trips away at short notice. This was the third one I have done recently and am beginning to enjoy life again. I don’t feel quite up to the long foreign trips just yet, but I am certainly enjoying that ‘freedom’ feeling. There are still many restrictions on my life but it seems that psychologically some of my old confidence is returning, I imagine, prompted by my slowly improving health. We have spent a few days away with our grandchildren on the English south coast, and although it was both physically and emotionally draining, it was fabulously refreshing. My cancer work was taking a back seat despite some very

Coping with loss

Coping with loss

From a personal health perspective, this week has been a very positive one. I have seen two lots of doctors and both agree that my progress is such that my treatment should be reduced further. Meaning that if we continue at this rate I may be off all treatment by Christmas. If this happens, it will be the first time since my diagnosis in 2007 that I will be without any treatment at all! My days of counting chickens are well behind me, but things are finally moving in the right direction for me, and I will take any positives I can. However, in the work I do, I am never far from reality, and this week, two of my ‘community’ have lost their fathers. I have been with them

The gold standard in cancer support

The gold standard in cancer support

  In my previous post, I mentioned that I had been invited to stay at a hotel for people affected by cancer and life threatening illnesses. That experience was probably one of the most uplifting I have had in recent years, but yet again I am writing this post with a large degree of frustration, and as we get further into the piece you will understand why. I consider myself very privileged to do the work I do and meet so many wonderful people. The ‘asks’ I receive are varied, but I will only ever consider projects if I can see some tangible results in the short term. So when I was invited to visit  The Grove Hotel in Bournemouth and check out their facilities for people affected by cancer, I was

We all need different things!

We all need different things!

I have been privileged to spend the last few days at a hotel, (yes hotel!) for people affected by cancer. A more detailed blog of that experience will follow, but having spent a considerable amount of time with many people facing challenging health issues, I can understand much better  the problems faced by us all, communicating about cancer. My trip also included a talk to a group particularly focused on the twenty to forty year age group, so my experience encompassed a good cross section of ages. Everyone I spoke to had their own unique experience, and in every case, their requirements were different to others. Some wanted more information, others didn’t. Some had decided to continue with a very toxic regime of treatment, others had decided that their body had taken enough