Do you get the support you require?

This week has involved a great variety of work, and I have had a lot of communication around one subject, cancer support. I have spent many hours on social media, and have attended several meetings, either in a clinical setting or a social environment, talking to people who are involved in providing it. I also include myself in that, as support provided via the social media platforms is proving to be so important, the way we are now living our lives.

As my internet work increases, I find more and more people around the world, doing such wonderful things, all working under the umbrella of cancer support. It feels like an army! However, when I talk to patients, which I do frequently, either in my work, or when I am being treated myself, I can't help sensing that people are still not aware of what is available to them, or can't find what they are looking for, which I find very frustrating.

 

Only yesterday, a friend casually remarked, how wherever he went, he bumped into a cancer charity advertisement. It was a flip comment, but I understood what he meant. It is very difficult to avoid coming into contact with something cancer related, usually a collecting box! But in many respects, that is a good thing isn't it? We are making people aware of cancer, and now people feel more comfortable talking about it than they did, years ago.

So if there is so much more awareness of cancer and it's issues, how is it that people are still struggling to find the support they require? Is it because the type of support they require, just doesn't exist? I may be entirely wrong on this, so this is why I ask the question in this blog.

I have been to several presentations recently, where there have been many patients, in attendance. Most formats have been similar, with charities in the reception areas, showing information booklets etc,and selling Christmas cards. The people doing that were all enthusiastic, but it felt like a market place, where people were competing for customers. At no stage did I ever feel that the staff had a genuine understanding of what their audience was experiencing.

Given the fact that all the hard work done in the past has a got us to a stage where we almost have an information overload, it is not now what they seek. With information, the patient can make informed decisions, so we are definitely getting to a good place as far as that side of things is concerned. Also in the longer term I'm sure there are improved outcomes too, because of information.

The major difficulty, in providing cancer support, is that we all need different things at different times. From my own experience, and that of many of my fellow patients, our medical needs are mostly met, within our hospital. It's once outside that environment, where things change.

The more practical issues of life, have to be faced, and unfortunately, a handful of booklets, just doesn't really cut it. Sure, there has been a lot of research going into the information provided, but it doesn't end there. For many, that's where the real issues begin. Where do you turn? There is advice out there, but in many instances it is like looking for a needle in a haystack.

 

 

My opinion is that we need to be much more proactive in the way we provide support. We need to treat patients as people, and not just as a number to be targeted with mail shots and marketing. There needs to be a support coordinator for people, once they leave the perceived 'safety' of the hospital. You can easily become institutionalised and may need help adjusting to every day life, and signposting to local support that might be helpful for you.

From a society perspective, it is important that we do what we can to help people affected by any long term conditions, to be aided back to as useful a life as they can create. Giving something back, and feeling useful again. Hopefully, to be able to work, provide for their families and get a feeling of well being again.

Unfortunately in a clinical setting, I don't really see professionals talking about these issues. Our treatment is generally good, and we have come to rely on the system to help us, but on these issues it doesn't. We need to be much more open about this, and not be content to hand people branded books, and think that the job is done. Sure, time is an issue, but I really feel that much more personal contact is required, to improve things.

Maybe you disagree with my opinions and ideas. Hopefully you have found all the support that you required. If so, what worked well for you, and you would be happy to share? If not, what do you feel is missing ,and how could it be provided? Please feel free to leave a comment or tweet me @christheeagle1

Coming together in adversity

This week has been like a massive blur! My treatment took up Monday and Tuesday, and I spent Wednesday, catching up with my work and preparing for some presentations which I was doing on Thursday and Friday.

It is now 2 years since I started this particular regime of treatment, but with a combination of drugs and blood treatment, my body is able to help me have a reasonable quality of life. If I think back to when this issue started, I was unable to dress myself, or even cut my own dinner properly, and now thankfully I can do both! However it seems like at least another year before I will know if I can come off the treatment safely.

This uses up a large chunk of time and energy, but thankfully due to the advances in social media, I can keep in touch with people across the globe, to maintain my work, in raising awareness of the psychological and emotional issues of cancer. However, my preferred method of contact is in person, and this week I was able to do 2 presentations to very different audiences. I really enjoy sharing my experiences in large groups but the true effectiveness of what I do, is when speaking to people afterwards in a 'one to one' setting.

 

Many people are just not comfortable sharing their own thoughts in public, but are pleased to talk privately about their personal experiences. I felt extremely privileged on Friday, when I was talking in Durham at a large haematology conference. I managed to speak to so many people over lunch, and share views with them. Both professionals and patients were very keen to exchange ideas, and that is why I enjoy being able to meet people personally.

The previous day I was speaking in London to a group of policy makers for a large cancer charity. It was a fantastic opportunity for all of us to learn from each other. They were interested in my views about cancer support, and I was interested in how they worked.

In addition to the presentations, the Twitter bandwagon was still rolling, and people were sharing some of my recent blogs, and sending me their comments. It was great to receive 'real time' feedback from people who have just seen me speak too! Quite surreal at times. So on my long train journey back from Durham I had a lot of time for reflection on my week.

I have met so many different people this week, patients, professionals, and business people. All with a link to cancer, and with a passion to improve things. But things felt very different to when you normally first meet people. There was an immediate connection, no 'verbal jousting,' or trying to play 'one upmanship games.' A warm welcome was felt by all.

Every person, was doing what they could. There was no hierarchy either, everyone was communicating on the same level, be it policy maker or new patient. Of course we are all connected by cancer. This is the common theme. Some work in that field, and others of us have personal experience, but there was a feeling of togetherness. That same feeling is translated in social media. As most of you know, outside of this blog, my preferred medium for communication is Twitter. I have been lucky enough to be followed by a lot of new people recently, and with most of them, we are sharing quickly, our experiences and contacts.

 

In these days, it is easy to share, and by doing that, we can help improve things for others. This is the key to my work. What is the value of experience if not shared? Our lives are all touched by cancer, whether directly or indirectly. I was really moved a couple of weeks ago, when one of my football followers contacted me about my blog. He found it useful and shared the piece amongst his friends. This is just one example of people coming together in adversity.

A very recent demonstration of this, is what is currently happening in the Philippines. People from around the world are joining together, with a common cause, in adversity. We have seen many examples of this, but I do get slightly frustrated, when I wonder why does it take something like this to happen, to get us working together in this way?

Do you know that feeling of isolation?

This week has been an incredibly busy week on social-media for me. Last weeks post found it's way to many lovely people out there who shared and shared, till I think at last count we had 31 re-tweets of one link alone! Although my work is cancer focused of course, I try to talk on subjects that will affect all of us at some stage.

Watching the news in recent weeks, I was shocked to see how physically isolated, a lot of our older generation has become. Nearly 1 in 5 older people are in contact with family, friends and neighbours less than once a week; and for 1in 10 it's less than once a month. Half of all older people in the UK, about 5 million, say the television is their main company. This seems like it may be a cultural issue, with many older people preferring their independence, and not wishing to feel like they are a burden on their family. However that feeling of isolation, can be a very destructive force, first mentally and then eventually physically.

I have chosen to talk about the feeling of isolation today as I feel that it is one of the major side effects of a cancer diagnosis, and one that unfortunately is very difficult to deal with. The first major hurdle is actually recognising the problem. Then an even bigger issue is acceptance. If you have never had those feelings it will be very difficult to understand, how someone can feel isolated, particularly when they are continually surrounded by family and friends, which many of us are.

 

 

During my frequent meetings, with people affected by cancer, I am continually shocked, how I have to actually ask people if they feel isolated. It is something I have encountered, that affects almost everyone I talk to. However, many people feel awkward about mentioning it. I have also found it is a subject that is hardly ever discussed between partners. The main reason I have discovered for this, is the fear that the other person will not understand.

This is yet another side effect, that is rarely talked about openly. Doctors don't ask, and patients don't mention it. Something else to make the situation more complicated! Every diagnosis of cancer is unique, and will affect everyone differently. That is why there is not one single answer to this. But in most cases, it is not about taking more drugs or seeing a counsellor, which tend to be the common alternatives, if you mention that you feel differently, either psychologically or emotionally.

My feeling is that unfortunately, we are all seen as our disease, and not necessarily as a 'person.' When we see our clinicians, rarely are they able to see beyond what is wrong with us, into our life, and the part we play in society. A father, a husband, an entrepreneur etc. None of that rarely comes into the picture. This is where I feel we need a much more holistic approach to treatment.

There are signs that at last these issues are being recognised, with the introduction of a Holistic Needs Assessment Tool, developed by Macmillan Cancer Support, but that is still at the 'pilot' stage. Also the very successful #notalone campaign, which is raising awareness of the isolation issue. But in my opinion, so much is still left unsaid to the patient.

I see a massive irony here too. Despite the fact that we are finding an increasing number of ways to communicate with each other, we are also struggling more, with the feeling of isolation. How crazy does that sound? This is not only true for people affected by cancer. I mentioned the example of older people earlier, but if you really think about it, there are times when we all struggle with those feelings.

Whilst at school, or at work, or in a social gathering, we have all had times where we have felt isolated. Not physically, but mentally. Simply put, if we feel that we are different to other people in any way, we can feel isolated. Most of us are independent, and prefer not to look for help, we maybe see that as a sign of weakness? I'm quite possibly one of the worst examples of that!

For me, social-media has been one of the greatest tools to help with that feeling. Of course, I am the only one travelling my journey, but I am aided by others who have also travelled it, who are there for me when needed. There are no hidden agendas, and they ask for nothing in return. They just 'get it!' Unfortunately, many people who would also benefit, are as yet unable to sample the joys of the Internet, due to lack of knowledge, or affordable equipment.

In summary, the feeling of isolation after a cancer diagnosis is fairly normal, and is one of the main reason's I started this blog. I can't pretend to know the answer, but my offer for improvement is to make patients aware of it early on, so they don't feel that they are the only people feeling like that, as many still are today!








































 

Time is the real currency of my life!

I hope I'm not speaking too soon, but life has been very kind to me recently. I have found time, and stayed fit enough, to catch up with lots of people in the last few days. It seems that much as I decided that cancer was not going to dominate my life, it actually is, but in a different way to the one I had imagined!

When I was diagnosed, on that terrible day back in 2007, I was very determined not to let cancer dictate my life, and to be able to still choose what I do with it. I suppose at that time, I was getting a little ahead of myself, as there was no guarantee that I was going to live for very long at all. However, a few years on, and with treatments improving all the time, I am beginning to find myself with a reasonable quality of life.

It is ironic, that I have chosen to fill up my life with cancer content now. I draw comfort from the fact that it is all work that I can now choose, and involves meeting with lots of wonderful people, either patients or professionals. As I have mentioned frequently, people are my passion, and I am finding that my business background is helping incredibly with the things I do now.

 

A meeting with someone I had never previously met has prompted this post. They had been observing my work in social media for some time, and pointed out that I always took the trouble to thank people. My reason for this is that I know how busy everyone is, and if they take time to do something for me, I should show my appreciation. This person had come a long distance to meet me, so I thanked them too! It was then that I realised that I now value people, in terms of time, not money.

We all have a value to others, although sometimes we can't see that. We feel that if we do things for no financial reward, that we have no personal worth. Actually, the truth is very different to that! In my business life, I got used to everything having a cost, therefore it was easy to place a value on something. The same in our personal lives, we tend to judge people by what they earn, as it is an easy comparison to use. But for me, the most valuable thing I have is time. My time is borrowed so I really do appreciate it's value!

Given the fact that everyone is precious with their time, I can now ascertain my value in peoples lives, by how much time they give me. The same applies in reverse, by how much time I afford others. On this basis things start to look differently. I dare you to look at your social life in the same way!

I now realise, that one of the reason's I struggled psychologically with the fact that I was unable to return to my old life, was the value that I placed on myself. I was earning very well, and was always busy, I felt I was worth something. But very quickly, as I got sicker and sicker, and further away from work, I began to feel worthless. Mostly because I was no longer able to earn money. I can certainly empathise with people who lose their job for any reason. It has taken me a long time to find my true value, which is not in financial terms!

 

As I have slowly come to terms with my current life, my value is becoming more obvious. My personal and business experience is now in demand, and people are arranging their schedules around my availability. I know the efforts I have to make, to talk with people, either face to face,or on the phone. My treatment etc takes a lot of time and physical effort, also, as my family is increasing, it becomes more difficult to fit things in but I will if I can, and I want to.

My personal cancer experience, has taught me the value of my own time. It has also made me appreciate, the value of other people's too. We all choose how we use it, so I am very grateful when people decide to give me some of theirs! Whether it is by taking time to read this blog, share it with friends, or follow me on Twitter, thank you, because there is not much higher compliment you can pay someone than sparing time for them.

How do you value yourself? How do other people value you?