Archive for the cancer survival Category

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

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

Are you a proactive patient?

Are you a proactive patient?

As yet another week draws to a close, I have spoken to some very inspiring people, who are much earlier in their journey than me, but also want to ‘give something back’ for the wonderful help they have received during their treatment. They wanted to find out how to go about things, and what worked for me and what didn’t. I was also contacted by some smaller organisations who were struggling for regular support, and were asking my advice on things. This got me thinking, about the vast numbers who are affected by cancer, and I know from what they tell me, that they want improvement in the general support area. If everyone of us could work together, things would change much quicker than they do. But it is not that

Is corporation stifling innovation?

Is corporation stifling innovation?

This week has been one of my busiest in recent times, with a variety of engagements fulfilled, meeting many different people, from patients to Chief Executives. I have also done several presentations to different audiences. Firstly I’m grateful that currently my health is holding, enabling me to do these, but secondly it is a great opportunity to continue to find out personally what is going on in the world of cancer support. Reading and talking is one thing, but there is nothing like first hand experience. I would like to think that my previous business life, and my current patient experience gives me a unique perspective on things. But I have to admit to writing this piece with a dark cloud of frustration hanging over me. There was a constant theme during

Are you affected by fatigue?

Are you affected by fatigue?

In a recent post I wrote about how I wondered if I was being selfish, and that came around because I was finding difficulty keeping up with social arrangements etc. By coincidence I then had a review with my Consultant, when he asked me how I was feeling, and I mentioned my constant tiredness, we then had a very interesting conversation, and I learned a great deal. Like most of us affected by cancer our situation is unique, so things affect us all differently, as our circumstances can be very contrasting. According to my doctor I am a ‘one off,’ but I guess you can say that about everyone. His analysis of me was that I like to push boundaries, and although I have always taken note of his advice, I have continued to