Improvement for cancer patients?

Like most of us these days I lead a busy life, and  wherever I  go, people know that I work in the field of cancer. If I am not talking personally to people about it, I am communicating through this blog, on the phone or emails etc. As people who know me will know, I can talk adequately on other subjects too, but cancer is generally a common theme.

If people are not asking me about my treatment and progress, they are talking about someone they know, who has either been newly diagnosed, or is having treatment themselves. I guess like most people too, everyone, I know, knows someone who is affected by the disease.I think we are all aware of the official stats in the UK which tell us that 1 person in 3 will be affected by cancer at some stage in their life.There are times when I feel that figure must be higher, but I guess that is because of the area I work in.

This made me think back to the times of my parents.One thing I can say for sure, is that cancer was never ever discussed in a social environment. It certainly was something that was swept under the carpet. The word cancer was rarely mentioned then, even if someone had it! There appeared to be a real stigma attached to it! For some reason it was assumed that a cancer diagnosis was a death sentence. I put this down to general lack of knowledge, consequently people felt less inclined, to talk about something they knew very little about.

It has taken a very long time for some of that stigma to be removed, and still today, most of us feel uncomfortable talking about the disease. Some of the old fashioned reactions still remain, but I think we are making good progress in that direction. I often replay some of my conversations that have taken place at parties, football or restaurants and think that these would never have happened a few years ago.

In my opinion, if you can start talking about something, that is when the fear factor starts to reduce, so that is why I am so keen to raise awareness of cancer and it’s effects on everyday lives. So I take it as a compliment that people are very happy to talk openly with me about their feelings and experiences. If we as a society can maintain that progress, then some of the things that disease feeds from, will be removed.

I am still concerned though, about the psychological and emotional issues that people carry about with them and find it difficult to share.Certainly there is room for improvement in this area. I saw some stats recently that showed that the two people that cancer patients were least likely to confide their inner thoughts to were, a) Their Consultant, and b) their partner. Firstly they thought their doctor didn’t have enough time, and they didn’t want to let their partner know how bad they were really feeling in case that made them worse!

That means that there are still a lot of very concerned people out there. For them, treatment is improving, information about almost every subject is available, support groups and counselling are also open to them, but we don’t seem very good at sharing our problems.

My personal experience has shown me that very rarely, will people I don’t know, approach me if I am in a hospital environment. However, if I make the initial approach, very quickly the barriers start to lower and people feel more comfortable. This tells me that maybe a more proactive approach with patients need to be taken rather than a reactive one. I do feel that in general, health professionals prefer to say nothing much, for a fear of saying the wrong thing. Maybe this is a weakness in training or maybe certain people skills are lacking?

I have also seen various styles of cancer information centres. Some very well designed, light airy, modern and welcoming. Others very cold, sombre and unwelcoming. Sure, we need quiet rooms and areas for private reflection, but in my opinion most people would go into an area like that to have their spirits lifted. Maybe it is time to rethink how we use areas like these? I feel that they should be the hub of cancer patient care in the hospital, no matter where they are situated within the building.

Do you agree or disagree?? The above are my opinions based on my experiences. Please feel free to share yours. As I have mentioned at times previously, if there is a particular subject that you would like me to write about, please feel free to let me know.

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  1. I know that it is a few weeks since you put up this post but I had to make a comment as I agree with you that most people don’t like to talk about cancer.
    I was like you diagnosed with Mantle Cell Lymphoma and to ensure that I could communicate to all my family, friends and colleagues I set up a blog. This enabled all of us to talk openly about my condition without any embarrassment or awkwardness. This I think was a help to all concerned especially me, to know that so many people were concerned and supportive to me and my family enabling me to keep positive through the ups and downs of the treatment.
    I also agrre with you about Cancer Care/Information Centres should be in a very prominent and accessilble part of the hospital, staffed with people who are able to provide support, find the support you need or to just sit and listen with a box of tissues if necessary. I live in York and we are very lucky to have a very good Centre at York Hospital

    Kath

    • Hi Kath
      It was a good thing that you did with your blog. I think back in 2007 blogging had only just started.We did our communication through a block email. Certainly,the use of social media is changing the way that we communicate with each other.
      I used to spend a lot of my time talking at conferences etc to raise awareness of things from the patient perspective, which was quite time consuming, but now with the blog, we are reaching up and down the country and across the world. We are also reaching people we could never have hoped to get to.It is now a great form of support for a lot of people.
      Of course it can’t replace the personal interraction, but the convenience of it is great, as you can read it as and when is suitable for you, and participate or not, as you wish.
      It’s great that you have a good cancer care/ information centre where you are. As you also say, it is important that it is staffed by the right kind of people.
      Sharing experiences is what this blog is about. One thing I know is that experience has no value unless it is shared. Thank you for your very valuable contribution