This question is actually not as crazy as it sounds. In the last few weeks, I have had numerous conversations with a very good cross section of people about the lack of support for people affected by cancer, once they step outside the hospital environment. Despite, the length of time of my own personal experience, I am still shocked, how little support is available.
During myconversations with professionals, the biggest issue that I find is a demarcation of responsibility. My doctors, are doing their best to keep me alive. They care for all of my physical issues, either as an inpatient or by giving me drugs which I can take at home. Once I am outside of that scenario, it feels that I am on my own. My family and friends have been with me, for every step of my journey, but as I have said in previous posts, "I am the only one walking in my shoes!"
I am the one feeling the pain, and mental strain, of trying to stay 'normal.' Attempting to live a life, whilst trying to stay alive. Fitting in good things, around treatment and hospital appointments. Sitting at home, whilst my friends continue with their careers, and I do my best to be useful, as my body becomes weaker. Thankfully, the Internet was invented in my era, and I have been able to use my mind much more, and find different ways to use my skills, and occupy my time.
Talking to numerous of my fellow patients, I have yet to find many, that have been able to continue their careers where they left off, prior to their diagnosis. Many have had to go part time or are even unable to continue working, due to physical issues, or the amount of time spent at hospital. Several have been made redundant, and despite discrimination laws, are unable to find another job, once the word cancer appears! If you are not careful, a feeling of hopelessness can affect you. If you are unable to work, this can then create financial issues, which can then put a strain on domestic circumstances.
In the above couple of paragraphs, I havetalked about just some of the problems that can be encountered by someone dealing with a cancer diagnosis. There are many more! One of the most common forms of support discussed as an option,is counselling. I have two observations on that. Firstly, there are very few counsellors around and definitely not enough for everyone affected by cancer. Secondly, there are really very few people that actually require those services. Maybe if you get to the stage of being clinically depressed, but most people are frustrated with what is happening and might just require more practical forms of support.
There are numerous charities around, that are great for giving information, regarding your disease, treatment, financial issues etc, and they even facilitate forums where you can find like minded people, with similar issues. However, these facilities are rarely 'joined up' and tend to be a 'one size fits all.'
The biggest problem, that we face, is that cancer affects us differently. Our circumstances are all unique, so there is not one single solution. To find the answers to the questions we pose, will take a lot of hard work, talking to many different people across many different organisations. If we are honest, most of us don't have the energy or persistence for that.
Using my now, very large back catalogue of experience, my opinion is that we need to approach the problems of cancer, in a much more 'holistic' way. After all, our physical health is affected by our mental health, and if we are anxious about issues outside the hospital, that is going to affect our general well being. But where does the line of responsibility get drawn? Is it right to spend time with your clinician talking about your inability to find work etc? How do we drawer all of the strands of our care together?
Apparently, the survivorship issues that we are facing now, are because we have become more successful at dealing with cancer. The drugs and treatment regimes are more effective, and we are living longer because of that. However, this is just the first step. We now have to look at the quality of life that we have, and how to deal with the psychological and emotional effects of our experience.
How are you dealing with your survivorship? Do you feel that there is enough support around? How would you solve this issue?
Last week I was invited into Croydon Radio to talk about my work in cancer social media. The interview has proved very popular, and I have been asked to post a link on the blog.
If you clickhere it will open up the link. If you then click download it, a slider will appear. My interview is the second half of the show, and you can use the slider to control what you would like to listen to.
For any further information regarding the show etc please contact @BrainTumorAunty
In my previous post I talked about the value of time, something I am beginning to be very aware of in my life. Being on fortnightly treatment, those days become markers in my life, and they seem to come round with increased speed.In the last few weeks I have been able to fit in some really exciting projects, and I have been asked numerous times about my working life before cancer, by people I have only recently become acquainted with. Therefore they don't know anything at all about my experience.
However, they seem genuinely surprised by the variety and quality of the projects that I am involved with. This causes me an element of internal frustration! In my regular working life, I would be doing a lot of difficult negotiations, for fun, and I would be selling goods and services, around the world. So the work I am able to do now feels somewhat insignificant by comparison. This prompted my worst thought for a long time. What if I didn't have cancer?
I tried very hard not to think about that, as I knew it would take me down a path I shouldn't really go down, but I was in a very stimulating conversation, with someone who also had their career cut short by cancer. They weren't thinking at all like that, and are doing great things in the cancer world, including writing a book. They had accepted how their life was going to be, and are living their new life now. Not necessarily happily, but without the emotion of anger to drag them backwards.
This made me feel slightly envious, as I still struggle to accept my own situation, and am battling my demons, on some occasions pretending to myself, that things will eventually return to how they were. I don't really know why that is, as I am a very realistic person, but I seem to have some sort of block in accepting that my old life will not return.
My work has become a lot more 'joined up' and public now. My fund raising, speaking and writing, function as one, and this blog is the heartbeat of it. So without thinking too much, I have created an international presence now. This has all happened because of my illness, and something that I am only able to do in between treatment regimes. That sometimes feels like trying to drive the car, whilst the handbrake is still on!
Why did the "what if?" question enter my mind. It hasn't done for a while. After 6 years I would have expected those feelings to have almost ceased, but obviously that fire is still burning inside. I think my frustration, was also for the other person, although they showed none at all. I was angry that they too had lost the opportunity to fulfil their potential in a work environment. Cancer has certainly given me new experiences, which I would never have encountered, however it has also taken away, many of the major ingredients of my old life, without asking!
Possibly, that might be the answer. I love doing the work that I do now, but it wouldn't have been my chosen path. I would have still been on the crazy 'hamster wheel,' chasing work and money. In some masochistic way, I enjoyed that life and it stimulated me. If a slower path was an option that I had decided on, that would have been ok.
When I was diagnosed back in 2007, I was towards the top of my game, and I always felt that there was a lot more to come. In many respects I feel cheated, that the opportunity to fulfil my working potential was taken from me. however I also feel angry when I see what it does to others. Maybe I have used that anger positively, to enable me to do what I do now? However it still feels like negativity in my mind. Did I fail to reach my potential, or am I doing it in a different way? I have to now believe the second option!
Do you ask yourself this question, with anything you are involved in? Maybe you have had choices and made the wrong ones?
Back in the days when I was a full time business consultant, I was very aware of the value of my time, as I was paid by result. Generally, the harder I worked, the more I earned. For most of us, the more hours we work, the more we get paid. But take us out of the work place, and it becomes more difficult to find the value of our time. Also, we may well value our own time very differently, to how others do.
This post has arisen from a chance conversation, I had with a business expert who I am in contact with via social media. I learned so much from our chat, and I was very shocked to see how much my business brain, has been suffocated, by my constant drive to 'give something back!' Since my diagnosis, back in 2007, things have come at me thick and fast. My early prognosis of "a very short time to live," has totally dominated the way I live my life.
Like everything else in our lives, things are changing quickly, and the constant need for re-evaluation is there. However I never saw that need in my own life, until recently. This prompted me to think about time away from the work place too. My view is that time, is the most valuable asset we have, and in this very commercial world which we live in, we need some form of return, on our investment of it.
If we spend time with people, we should enjoy it. Spending time volunteering will give us enjoyment plus experience etc. We can build relationships with people, which requires a lot of time, but we will reap the reward in the future. Investing time in our children will see a brighter future. It is as if time is something that we are happy to trade, and when we go to work, we exchange it for money.
Unless we are faced with something that is life threatening, we rarely consider our own mortality, and envisage the perfect life plan where we can retire, do what we want, with no money worries. However, if time appears limited, that will change what you do with it. The value of it, increases, as it gets less. Things that seemed important at the time, start to lose their appeal.
My personal reward for my time, has always been the enjoyment, that I can bring to people, particularly, those unfortunate enough to be affected by cancer. When I started out on this road I was given a fabulous piece of advice, which was, "for every giver (me) there are at least 10 takers." I understood what it meant, but I couldn't believe it might be true in this sector. However it is. My conversation with the industry expert, confirmed my suspicions. Apparently I have been the worst judge of the value of my own time! Mrs L is also right, but like anything else, I have to find out the hard way.
So this week, is the start of a more up to date way of looking at what I do. I now ask myself, "what do I get out of it?" before I approach new projects. Not in a selfish way however, but more looking at self preservation. There are many invitations for me to participate in projects run by major organisations, which is great. I can see why they would want me sitting at their table. However, if I ask my new favourite question, I can't see an obvious benefit for me. As I never seek kudos, and am not looking to vastly increase my experience.
The last few days have been spent on the coast with my wife and grandchildren. Meeting with friends and enjoying the sun. We haven't done that for a long time. In a few weeks, I will be taking my first holiday abroad for 3 years. Going to a warmer climate with friends, can't wait! In recent months, I have struggled to find time and energy for a social life, which is shocking. Ironically, I could offer advice to others on time management!
Lesson learned in time hopefully. How do you value your time? Do you feel that you would like to change things in your own life? Do you feel you can't, because work is too dominant, and necessary?
On thisThursday, (22nd August) UK time 12-2pm, I will be talking about the important role of social media within cancer support, onCroydon Radio If you click on the link it will show you details of the show. Please feel free to join in via the internet. You can listen live and post any questions for me. I look forward to connecting with you!
When I answered the phone, a fewdays ago and spoke to a friend of mine, I started with our normal banter about football. We usually discuss the latest rumours surrounding our football club, who we should or shouldn't sign, and general 'man rubbish.' However this time was different. There was a very quick break in proceedings, and my pal announced that his wife had joined my club! For a minute, my mind went blank, and I assumed that he meant she had signed up to receive my blog notifications. He then very quickly followed that, by saying that his wife had been diagnosed with cancer!
That conversation prompted this weeks post. Due to my own personal situation, and the work that I do, I am talking cancer, on a daily basis. A lot of people have asked me if I would be better doing something else, but it just feels so natural now, it would feel strange without it! However, it does mean that I hear very frequently from people who are newly diagnosed. Of course, one of the early problems you face is how to break the news to others. Like most things associated with cancer, there is not one single answer. Everyone handles this issue differently too.
In my own instance, my diagnosis was such a shock, as I had been very healthy up to that point. There were a lot of people involved in my working life, and so many friends in my social world. We didn't really know the full extent of things but knew that I was in poor shape. A lot of my normal life was going to stop quickly, and my appearance was going to change as the treatment regime, accelerated. I felt that I wanted people to know, about it, but wanted to do it personally, in a lot of cases. I just didn't want that type of news spreading quickly, by phone etc.
It was very tiring and time consuming but within a couple of weeks, I had managed to tell most people who needed to know. I felt a whole lot better, the fact that I had explained things personally. But I had never considered how those people had felt, once I had told them! I then realised that it wasn't always about me and what made me feel better. What I didn't also realise, was that the way that people viewed me was also changed forever. Whether I like it or not, I am now seen as that guy who has cancer.
That helps me to understand, the people who don't say too much, when they receive their diagnosis. I know someone who didn't tell their partner until they were terminal. It really is a very personal decision. My experience has taught me how to handle this situation now, but there are times when even I am caught 'off guard.' There are two occasions that spring to mind.
The first is when I was having dinner with a great friend of mine, and midway through the meal I was informed that they had cancer, which involved some serious surgery, and a lot of treatment. There was no warning, and I had no idea, but it had obviously been eating away in their mind, and it just came straight out! The second was when I was at a large social function. I met someone who I hadn't seen for a long time, and asked them how they were. Again they came straight out and told me that they were in the middle of treatment, as they had relapsed, and things weren't looking good.
Initially, I felt very awkward, but very quickly that passed, and I dealt with both situations. I know from my own experience, that you can feel better once you have got something off your chest, but most of us don't consider how others might receive the information that you are giving them. It also taught me that if I felt awkward, with all the experience that I now have, how might anyone else feel? Is it any wonder that we may think twice about how we might tell people that we have cancer?
My own view has always been to get things out in the open. It has always seemed logical, that once you know all the facts, then that will help you deal with the issues. However, that is not everyone's view and I know that a lot of people are just not comfortable, talking about personal affairs in public. Cancer is unique in so many ways, and this is yet another example of that.
How do you deal with delicate issues? Do you like to talk, or deal privately with things? If you have had a cancer experience, how did you deal with it?
The last few weeks have been particularly tough for me mentally. After more than 6 years on my 'bumpy journey,' I have seen so many heart breaking situations, many personal, but plenty from friends and colleagues. I have often thought that I have experienced so much in the cancer environment, that there surely can't be anything left that can shock me and pull on my heart strings. But there always is!!
Ironically, my personal health has been the steadiest it has been for some time. The good weather has finally arrived, and the constant threat of colds, flu and chest infections, has subsided for the time being. My maintenance treatment is keeping me mobile, and I am slowly peeping back into the real world again, although with caution, I might add!
Due to my commercial background, I consider myself to be in the 'cancer business.' It also feels like a business, because it is what I spend a lot of time on. As with any business, there are certain things that will always be part of your work. Unfortunately, in this environment, death is very much a part of what we do. Nobody wants that, but it is a fact. Given that this is the case, we must expect to deal with it.
How we deal with things when someone 'passes,' is unique. We will all have had different relationships with that person. Some of us will be closer than others, family and friends, then colleagues etc. There are no rules how we say goodbye, we all do it in our own way. Interestingly, now days, most ceremonies, have a religious basis, but things are even changing here. People are starting to personalise things, to reflect the wishes of the individual.
Yesterday, I was celebrating the life of an incredible young lady. I was fortunate to be a friend and colleague, and my personal experience of a stem-cell transplant was helping her through her own set of unique circumstances. In her young life she touched so many people, with her boundless energy, warmth, and enthusiasm. Even though she was going through her own personal trauma, she would be campaigning or fund raising for cancer charities.
In reality, she only lived, half an average life, but the things that she managed to achieve in such a short time, were probably more than most of us could manage in a lifetime. Her impact cut across generations, and there was such a mixed community to celebrate her life together. We were all recalling our favourite moments, of which there were many.
But this is not where the story ends,nor should it. Her legacy will live on! She has done so much campaigning in the cancer field, that you won't have to look too far, to find a video or a magazine article written or presented by her. The impact she had on others was incredible. She certainly helped improve lives, whilst she was able to, and I'm sure that so many new lives will be positively changed in the future, by her work in the past.
I guess that when most of us think about the word legacy, it involves finance. For example, what we might leave for our children when we die. Since my life has been affected by cancer, my thoughts turned to my own legacy. I have been extremely lucky and have managed a few extra years beyond expectation. This has allowed me to put certain things in place which can hopefully continue, beyond my own life time.I am also trying to play my own small part in improving the lives of people affected by cancer in the future.
I am celebrating the lives of my friends who have died recently. They have had a massive impact in my own life and work, and will continue to. I know that their legacy will live on long into the future, and that their families are very proud of what they were able to do. I am so grateful, to have been a small part of their life too.
This post is dedicated to Bengu Shail, and her family. Thank you for being my friend, and for the legacy you have left us. A brilliant example of Bengu in action can be seen in this video please take a few moments to check it out.
