My favourite area of work is with young people, and there are two main reasons for this. The first is that I just love the enthusiasm and energy from this group, but secondly, I am genuinely shocked, at how little support is available, and I want to make some noise about this!
By chance, I have spent the last week, involved with some young people. I have attended a presentation by Shine Cancer Support and was privileged to meet several, vociferous people. I also met many young people raising money for Macmillan Cancer Support #CoffeeMorning. Since then I have been in regular contact, with others that have found me through Twitter.
Experience shows me that, services are ok, if you are very young, teenage, or 'middle age' but the group of 20s 30s,and 40s is largely forgotten. There are specialist units and charities that can help support you in your earlier years, but what happens when you move from being a teenager, to becoming a young adult? It seems that you start falling between the large cracks in cancer support.
I was 50, and very worldly wise when I was diagnosed, but I struggled to find the appropriate support I needed. So I am not at all shocked to hear that young people, who are just starting to find their place in the world, can't find what they need to help them, when facing a cancer diagnosis. My opinion is that in the past, this group, has not really had a voice, but with the now vast, use of social media in this age group, people are beginning to join up, and fight this inequality.
Many of the issues that this group face, affect them so differently to others. Fertility, relationships, education, and living with uncertainty, are just some of those. These decisions, are life changing, and difficult to make if you are in perfect health. Imagine the pressures you may face when dealing with cancer too.
During one of my many recent conversations, dating was being discussed by some young ladies. They were all talking about when they should tell any new partner about their cancer! At the start of the relationship, over a dinner, of just before hopping into bed? This was particularly poignant for anyone who has had surgery. We were all laughing, as we imagined some very strange scenarios. But the point was well made, and so important.
The ease with which these issues are discussed peer to peer is very refreshing, but the biggest problem I see is the difficulty in communication between this group and the health profession. Generally, it is like there are two different languages being spoken, and both groups struggle to understand each other at times.
Unfortunately, I cannot really think of the answer to this issue, even if there was an unlimited supply of money. But what I am really aware of, is the difference that communicating with someone, who has faced/is facing similar to you, can make. There are national charities that facilitate forums etc, but I am not convinced that this is what is needed. Unfortunately, although these are very safe areas, on the whole they don't truly represent what is happening in real life. There are many unofficial communities forming which are much more real, but still safe.
Small, local, and more welcoming support, seems to be what is required, but the way that marketing is done these days means that local organisations are constantly struggling for funding. What I have also seen is that, particularly with this group, the people running the support, need to have a greater connection to the people receiving it. I constantly see people in charge of large budgets that have no idea, of the issues that the people they are trying to help, are facing, they are just too disconnected! A common issue across most support agencies I feel.
Enough from me! I have attached a part of a blog from an amazing young lady. Sam has written a couple of guest posts for me, which have had tremendous impact. She writes in that very refreshing and blunt style, that I was referring to earlier. This piece is an example of the issues that these young people face. She refers to her experience with radiotherapy.
"I can't look at this mask any more because I am now coping with my cancer more than I did when I was being treated. I now have the time to think about everything that happened. And the more I think about it the harder it has become. I have nightmares, panic attacks and anxiety pains when it comes to thinking about cancer, just last week I convinced myself I had bone cancer and this week I was convinced I had a brain tumour, I know I don't but thinking about these things gives me pain which makes it worse! And theres no not thinking about it. Cancer has taken over my life. I have become my cancer. Oh bollocks!
I've thought about counseling but that's not something I want to do again as it has only helped 1/3 times for me.
I've tried keeping it to myself but it only got worse.
I have my follow up next week and I'm hoping there is something or someone who can help me!
I look strong and healthy and like it never happened to me but my thoughts and emotions are only just deciding to catch up and look for healing help.
I honestly don't know whats worse, this torture of my thoughts going crazy or the constipation that came with chemo (I still don't poo the same!)
So please, someone tell me how to get rid of Samantha
And if anyone has any advice that doesn't come in a leaflet, that would be fab. I know we are ALL different in our cancer but there has to be someone out there who's had all this too!"
I definitely couldn't have put it any better myself Sam, and many thanks for letting me use this incredible piece. To hear more from Sam you can follow her on Twitter @sam_lightyear
or keep up to date via her blog
It has been an incredible few weeks for me, with my writing work. I have won an award, and started writing for 'Beauty Despite Cancer' But more importantly, this blog has been shared so much, via social media, recently. The last few posts particularly, have received some fantastic feedback from the readers. I feel extremely happy that my vision of reaching significant numbers of people affected by cancer, is finally starting to happen, and we are now being listened to by some very important Health Professionals.
I have personally, invested a lot of time into this blog, because I believe that there is a need for an independent platform, like this. I am aware that there are a lot of people in the cancer community who are feeling isolated and don't know where to turn. It seems that as more people find us and spread the word, we are beginning to make a difference, and I thank you all for that!
This weeks post came about from some comments that were left on a previous post regarding survivorship. I mentioned that I would like to have known about all the possible side effects of my treatment, to help me plan. The person who left the comments felt that, there was no need to know about something that may not affect you anyway, as we don't all get all of the possible side effects. Which I thought was an interesting way of looking at things, and was very different to my own!
On reflection, I have come to have sympathy with that point of view, but only after a lot of thought. This really is the joy of sharing! We don't all agree, but there is always something we can learn from others. I started thinking back to my first treatment permission form that I had to sign. It was full of things that may have happened to me, including dying during treatment. However, whatever the issues were I had no choice, or I would have died anyway!
A lot of those things did not really affect me too much ironically. It was more about the things that I wasn't warned of! Thinking back, no one, even the doctors, knew what to expect. How my body was going to react, to the treatment, or how my mind was going to react to the after effects. Every case is unique.
We all process information differently, too. Some soak it up like a sponge, and others want to know as little as possible. I now understand the point, that we can have an information overload, and we may well start worrying about something that will not affect us anyway. So I conclude that like most things connected with cancer, there is not one single answer.
The response will be different in every case.
In my own instance, I was informed about the physical battering that my body would take, and I was ready for that. Although, I can say that things were even worse than the picture I had painted in my mind. However, what really surprised me was the social and psychological impact that this has had on me. If it had been, mentioned at the time of treatment, that my personality may totally change, I would not have thought it was possible, and I'm sure I would have laughed!
The possible psychological effects were never mentioned, although I am yet to meet someone who remains unscarred after a cancer diagnosis. But it seems we have all been affected differently. Discussing these issues at the start of treatment would create more questions than answers, certainly! Is it a deliberate policy to avoid them? Maybe it is better that we don't know.
An alternative train of thought may be that if you knew all the possible side effects of your treatment, you may have made a different choice. Possibly a different regime, or maybe none at all. You may even ask how can you make your best decision, if you don't have all the facts?
In summary, it was better not to know in advance, about some of the things that have happened to me. Maybe it was done deliberately for my benefit. I think I was told as much as I could handle, and I think that varies, depending on your own circumstances.
Do you think you were given all the necessary facts on diagnosis? Would you have liked to know more? Were you given too much information? Would you have changed your decisions, with the benefit of hindsight?
Since I was introduced to the world of social media, I could immediately see how powerful it might be. Certainly, like any new tool, you have to learn how to use it properly, to get the best from it. Which takes time. With trial and error you will find what it does well, and what it does, not so well.
Coming from a business background, and attempting to always keep things simple, I couldn't see what wasn't to like, by connecting like minded people, across the world. Once I found myself taken hostage by cancer, I applied similar rules here. If I can't find physical help for what I need, let me look on the net!
I couldn't find what I felt was required, so I thought I would try and create something. People often ask me why I spend so much time on a project that doesn't pay. But I know, how much difference these blogs make to people affected by cancer. How much they can relate, and how they help to remove that terrible feeling of isolation. Some things are not about money!
Below, I have copied comments, as they were published on my previous post. They moved me so much, that I felt obliged to share them with you. Psychological and emotional support for people affected by cancer, is still desperately lacking, and in a lot of cases, the issues are barely acknowledged. People are carrying this burden constantly, along with their physical problems.
It's not only patients that are gaining from our writing, but I know personally, when I speak to members of my own medical team, how shocked they are at some of the things, they read on my blog, that are happening to me. We are all still learning, but we need to accelerate things. Time is one thing that is not on our side!
"dear chris,
first some background of what I believe has given me a clue
about feeling lost. both my husband and I had cancer at the same time - his was
multiple myeloma, mine was ST IV meta BC, amazingly, we both achieved remission,
also at the same time! we decided to mix the "new normal" and live
"life-reinvented", gloriously and to the fullest.
sadly, only 9 months
into remission, hugh died -
very suddenly. I found him next to me in our bed
with no respirations or pulse. after 3 days in cardiac ICU, he was removed from
life support, and I was a widow.
two months later I was diagnosed with
uterine cancer, ST 3 with mets to the cervix. I am starting tx this
week.
it's my belief that feeling lost is really grief. I know grieving
for my husband is a separate (though certainly overlapping) process. but I have
spent a great deal of time in retrospect, and now realize that what you spoke
about reflects what hugh and I lived when we were in remission - a desire to
live on our own terms and not on cancers' term. now, as I navigate towards tx
with a new cancer alone, I can reflect in a more realistic way on what both hugh
and I might have suffered post treatment - and I know we did feel tremendous
grief at the loss of so much. but you see, it was we two, still crazy in love ,
desperately wanting to celebrate life. there were times we hid our pain and
fears and losses - our grief - to help one another be happy.
as I grieve
profoundly for my beloved, I feel extremely grateful for all those nine months
we had, as well as the time we had cancer together. it almost seems a
meant-to-be-ness that we became so utterly entwined and in love with each other,
and a same meant-to-be-ness that we were able to live so happily those 9 months
- ignorance was truly bliss.
in retrospect, as I read your post, I ponder
what all would have befallen us had we not been a couple with cancer, nor
achieved a robust remission together, and not flung ourselves head long into a
life of adventure and delight. my conclusion is that eventually grief would have
had it's way with us, I've wished many times to be able to bring clarity to so
many mixed emotions, chris. sometimes my widow's grief is the overwhelming force
in my life - hugh has only been gone since may 5th. but as I near treatment for
the next gauntlet of cancer to go through now I am more typical of the
individual who will face it alone; and even if one has faithful and supportive
spouses, family, friends, and whole posse of good doctors - there is still the
loneliness, insecurities, fear, and feelings of helplessness.
the big
question is how in this day and age, could the medical community dismiss the
element of grief from our care. the bigger question looms with more urgency -
when and how will the message be delivered, loud and clear, and be dealt with by
clinicians who simply give no validation to their patients, leaving them bereft
and feeling lost and grieving.
chris, I can't thank you enough for
sharing your story in this post. for months I've had such niggling and confusing
feelings about insecurity, fear, and at times, just wanting to walk away from
all things cancer, thoughts that are so foreign and disturbing. being able to
comment meant I had the task of trying to figure out the very bewildering and
sad and overwhelming issues you brought to the forefront. and I am so grateful
to have had your post to finally be able to have clarity.
I am so sorry
for all that you have had to go through. you are amazing, and a wonderful
resource for superb support and the education you give so generously to others.
I hope with all my heart it will all come back to you a thousand-fold. keep
writing - you do it so well, and your are helping legions of other's whose
hearts, minds, bodies and souls are hurting.
much love, and lots of warm
hugs,"
Karen, TC
My heartfelt thanks and good wishes go out to Karen, and thank you for sharing.
Regular readers of this blog will know that I have just returned from a weeks holiday. For a lot of people this is not such a big thing, but due to my illness and treatment regime, this is only the second time I have been abroad in 6 years. Considering that I was a regular traveller, both socially and commercially, this is a dramatic change in lifestyle for me.
After struggling with my change of circumstances for many years, tossing and turning in my own life, trying to make sense of things, I have finally found a way of life that fits in with my health commitments. My treatment and hospital visits involve a strict routine, so I have had to adjust my family and work requirements around that. Everything now fits, and I have accepted my new life for what it is.
I hadn't realised that I am now in a new comfort zone. Whilst working, I knew how my life was going to run, and had got used to a regular way of life. Although my work was demanding, I could handle it comfortably, along with my very busy social life. I sort of knew what to expect with everything!
As the holiday approached, I became strangely anxious. Why? Our friends, who know Cyprus well, had booked the holiday, and were even driving, to remove all stress. As we approached Gatwick airport, I started to sweat. Everything had changed, it was bigger than I remembered. We didn't even have tickets, just e-passes. I couldn't understand why I was feeling as I did. I hated being on the plane for hours, and felt like a prisoner.
Once we had reached our destination we then had to collect the car, and find our way to our apartments in town. This is where we found a problem! My pal had printed the directions in Greek! It was midnight and very dark, and quickly we became lost. We stopped at least 5 times to ask people, but with a combination of accents and language, we got further lost. We were tired, and I was feeling very uncomfortable. Finally we found a man on a motorbike, who, sensing that we were really lost, very kindly told us to follow him. After many winding roads, and hills, he took us to our destination. What a lovely man!
The reason, I wanted to write about this today, is that I am shocked, how cancer has taken away so much of my self confidence. Never one to be shy,I can still smile at people and good things will happen, but internally I feel so different! I used to thrive on anything out of the ordinary happening, and was always up for a challenge. The life and soul, wherever I went. Now, self doubt, has entered my world.
For those of you that know me through social media and my cancer work, you might struggle to believe it, but it is true! I still have that air of confidence, but a lot of what I had, has disappeared. Travelling around the world meeting new people was a way of life for me. Now I get worried about a week in Cyprus with my wife and friends!
I don't remember loss of confidence being on the side-effects paperwork I saw before my treatment started. In fact so many thing that I have encountered through my treatment, were never ever mentioned. How do you deal with issues like these? Not through reading a pamphlet, or checking it out on the internet. This is real life! I can only imagine, what would be happening to me now, if I had very little confidence, going into the process.
Feeling lost, brings with it the feelings of helplessness and fear. Being literally in the dark without help is frightening. This is how many of us feel when we enter the uncharted waters of cancer for the first time. This is another feeling, that you would struggle to understand unless you had experienced it personally. It is difficult to deal with things that are outside your normal experience, when you are feeling well. But when you are not, the hills of life appear steeper and higher, and at times insurmountable.
Have you felt like that on occasions, or even regularly? Even if you don't have an illness to contend with, have you ever felt lost in your life? How do you deal with it?
Well, my previous post, where I was discussing the issues of survivorship, has become the most read, of all my pieces. It has provoked so much discussion throughout social media, which is very pleasing. Through this blog, I try and publicise issues, that people may find difficult to talk about. Also, our healthcare providers tend to ignore them, as there is not really a positive solution.
I speak from my experiences as a current patient who is having treatment and spending a lot of time in the system. My pieces are up to date and based on what is actually happening. You may be reading plenty of reports from different areas, but I can tell you exactly what is happening now.
My subject this week is about the contrasting ways which people deal with their cancer. This has come about, as for the first time in at least 3 years, I am physically able to go abroad for a week. (Whoopy!!) But I am struggling to get up to date with my writing and phone calls before I go. I also have several high profile events that I can't attend, as I will be away!
Since my illness, I have given over my time to raising awareness of the issues faced by people affected by cancer. This is all tumour types, not just my own. I have seen so many problems in these areas, that I thought I might try and frustrate myself further, by trying to solve some!!
Although, when I was diagnosed, I had decided that I wasn't going to be dictated to by cancer, and become a victim of it. However It does now dominate my life. Not from fear, but as an adversary. I know that I am unable to change my own situation, but I am determined to try and help others, deal with their lives, so that cancer doesn't wreak so much havoc.
I have chosen to immerse myself in this world, and people often ask me if I would be better doing something that didn't involve cancer. My problem is that I have had continual treatment, on and off for nearly 6 years, so my involvement is still there, whether I like it or not. So I would find it very difficult to actually switch off. As I have mentioned previously, there are times when being a cancer patient is a project in itself!
During my many hospital visits and numerous social media communications, I am very refreshed, by so many people, that barely mention their disease. As best they can, they have tried to claw their life back from the jaws of cancer.A proportion have been able to return to some form of working life, others have been taken to the bosom of their family, and are enjoying some quality time with their children/grandchildren.
Despite suffering with side effects of treatment, they are doing their best to recreate their old life. They seem genuinely shocked, that I spend most of my spare time, either talking or writing about cancer and fundraising. Obviously,I have learned so much about it, that I can now hold reasonable conversations with physicians, but they say that, "a little knowledge is a dangerous thing," and in this instance there is an element of truth.
I notice a certain amount of 'innocence' amongst the people I know, that have chosen to 'move on,' with their life. In their conversations, the subject of cancer, rarely rears it's head, and actually I feel guilty, when asked about my own situation, as I know that it will prompt a conversation that they may not want.In some respects I am quite envious of this style of coping. Outwardly, there is no sign that cancer had been a part of their life. Although I am very aware that the situation is not the same mentally, as everyone will carry those scars forever.
My style, has always been to face a problem full on, which I feel I have done with my own issues, but something has directed me to the path that I have chosen. I very much enjoy what I do, although it can be all consuming at times, but I have become more disciplined with my time now. I guess for me it is about the challenges around cancer, and to see if, in my limited time, I can improve things, for others!
How do you deal with your cancer? Have you tried to put it to the back of your mind? Or do you throw yourself into helping others? Maybe you just want to move on, like a majority of people?
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 my conversations 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 have talked 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 click here 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, on Croydon 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 few days 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?
