Tough times but how satisfying!!!

I have just had an incredibly tough, but unbelievably satisfying couple of days, and I would like to share some of the highs and lows with you.

For the last 5 years I have been in a hospital environment, very frequently, and am always looking, listening and learning from those around me.I have been constantly frustrated, by how frequently, different people talk to me about similar problems. These are all related to a cancer diagnosis. I kept thinking that there are so many people here asking the same things. How is it that this is still happening?

We have information booklets, cancer centres, health professionals, support groups, social media and of course the scourge of most doctors, the internet. But still people have many searching questions. I came up with three basic answers. Firstly, people want to communicate with people that have had similar issues to their own. Secondly, they want to communicate in language that they understand. Thirdly, they want to communicate at a time that suits them.

I concluded that very few of the above mentioned resources do all these things together. My business background has been uncomplicated but successful. ‘ Less is more ‘ , ‘ Keep it simple’ . But the first rule of any business is to establish exactly what the customer wants! I know this sounds crazy, but so many people don’t do their research. You can only do this by talking to the end service user. It is not about what you think they want!

I am a service user, and I speak to my fellow patients on a regular basis, so I do know what is required. I decided that with what little spare time I have, I would like to try and use my experience, and plug that gap. I started with that idea, and with help and encouragement from some lovely people, ventured into the big wide world of BLOGGING.

Wow, what a world that is!! Millions of blogs from around the world, on any subject you care to name. Videos, pictures, adverts and loads of bright colours. With my first post launched, it felt like I had thrown a bottle into the ocean, looking to see where the tide would take it. Would anyone even see it??

How often should I post, what should I talk about and in what order? All problems that only really came to mind, once I had launched. With no official advertising, but great support of people where I visit hospital / volunteer, things quickly moved on, and people were beginning to find my bottle! Even internationally, which I hadn’t even thought about.

It quickly became obvious that people wanted fresh content quite frequently, so instead of posting weekly, which was my plan, I post four times a week now. Readership has grown steadily, and this week, Macmillan Cancer Support, invited me to be a guest blogger. Very quickly more people started reading, and I had some really positive comments from people on Twitter and the Macmillan Facebook wall.

That was great but I have also spent the last couple of days having treatment, and some of my fellow patients were explaining how valuable they thought that the blog was. I met one person who I hadn’t spoken to before. They was explaining how ill their partner was and how many of the family were affected by cancer, and how difficult things were. I mentioned what I do and gave them my card, and they said that that they had heard about what I do, and would pass my details on, as some of the people just felt that they couldn’t talk to anyone.

From an idea, very quickly it is growing, with your help, (thank you!!) It is starting to do, what I hoped it would do. I emphasise, starting!! It is great to be able to reach so many people, truly a modern miracle! But then again so am I!! I am battling with my treatment, which is a particularly tough regime, and my red cells are struggling to recover from the battle with my GVHD, and treatment combined. This was confirmed today, with more tests. There is a physical reason why I am getting more tired, and I may need a blood transfusion or more, to help me deal with this.

The last few days have really been both mentally and physically exhausting, but have also reminded me exactly why I chose to do this. You guys are certainly the petrol for my engine!Together, we can improve things. I guess I have just reached an uphill part of the journey!

2 Comments

  1. Keep steady climbing the hill, we never no what to expect at the top, but we can always relie on a view to reminder and share.

    We are all here to help you climb, please ask for the guide and a map of things will come.

    A light of letters and emails will flud your way and we can keep you blog alive for another day.

    Enjoy youe time away to rest and mind set for the next episode. In the Lewis house hold, as it will not be too long for the family to spread.

    Bev

  2. Hi Bev
    Many thanks for your very kind comments. It is always easier to work, when you know that you have a supportive team around you.I know that the readers always appreciate reading peoples comments.

    As you know I always find it difficult to rest my mind, as there is always so much going round in it!! But have done my best on this trip.

    Thank you for your continued support and very helpful comments. I’m pleased that you are enjoying the blog. TU, Chris

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