This week I am delighted to have the opportunity to write a piece about carers. Firstly I would like to say that this is not a word that I like personally, although I have thought long and hard over many years, to find one better! When I was younger I always visualised a carer being someone who would look after me in my old age. I certainly never imagined I would need one at the age of 51. Neither did I think that person would be my wife.
There are many people who are carers, and wouldn't recognise themselves as such. Without these wonderful people, our society would be a very different place. This is before you include the professional carers, that help our sick and vulnerable people.
Without these people, many would have a much poorer quality of life.In my own example, if my wife didn't do so many things for me, I would not be able to continue with my support work. I often think, wherever we go, that I, as the patient, get all the attention.My medical team, look after me, as a VIP, and socially our friends always ask how I am, but my wife is rarely considered. In many respects taken for granted.
Most people looking after friends and loved ones do that willingly, selflessly, and with very little thought for themselves. Their roles can be short term or last for a lifetime. They just do what is necessary. Certainly they do not look for any recognition. My worry with this though has always been, that if they don't recognise themselves as carers, they may not realise that they also need help.
This week I am honoured to include this guest post from Jayne Cox,who amongst her many roles, delivers workshops to both carers and patients at her local hospice.
Caring for the Carer
As a carer you have a vital role in someone’s life. It can be an ever-changing role and may be driven by your love but also requires your dedication and strength to carry on with what can feel like a difficult full time job. Your place in someone’s life can feel as if it’s changed and your relationship quite different now that you not only love but also provide care on so many levels.
So how do you remain positive and find inner resilience as a carer? Let me share some practical ideas with you.
1. ‘It’s really not fair’ and it’s ok to feel this and to say it out loud. Allowing your natural feelings to be shared is a step in the right direction. When you’ve acknowledged how you feel it allows you to move forward.
2. Think about who you have in your life. Who will allow you to speak and will really listen to you? This may be people you know well OR people that are almost strangers.
3. Some people benefit from meeting with other carers. This can help with the feelings of being isolated and alone. Ask about local groups.
4. Most of us can find resilience in the most difficult of times and it’s good to develop this habit. You can accept that life is changing and learn to adapt. It’s good to discover the things that you do have control of in your life. Notice ways to feel more of a survivor than a victim of a situation. Learn to problem solve and ask for help.
5. Look for ways you can have some normality in your life. For example, socialising, work, hobbies, self care.
6. Are your spiritual needs met? It can help to explore what spirituality means to you. More here
7. Take walks outside and enjoy open spaces and fresh air.
8. Notice good things that happen in a day with your loved one. Write it down and recall the moments.
9. What are you grateful for? This is a lovely way to end the day and again writing it down has more of a positive impact.
10. Allow your natural thoughts to be noticed and see if you can give some distance to any difficult thoughts. Imagine balloons containing your thoughts, which will you hold onto and which ones can you allow to float away. Mindfulness and meditation are good practices and there are apps for your phone that mean you have them close at hand.
11. Find some balance. This can be keeping busy and productive balanced with rest and relaxation.
12. Practice rational optimism. This is accepting of reality, having hope and seeing that life is for living.
13. Make time to be together and focus on what you can do.
14. It’s ok to want your own space. It’s natural to sometimes need silence and quiet. Notice if this becomes unhealthy and you withdraw and reach out for support.
15. There are 2 special P’s that can really help us feel much brighter. Pets and People. Stroking a pet or spending time with animals can change how we view things and relieve stress The right people, supportive and positive listeners, are a great asset too,
16. Remember caring for you allows you to care for another.
Caring isn’t easy and it’s not possible to be positive every minute of every day. It’s often about drawing a line under the bad day and remembering the sun will come out again.
Recommended support:
Carers app called Jointly https://www.jointlyapp.com/#welcome
10 steps to more resilience http://psychology.about.com/od/crisiscounseling/tp/become-more-resilient.htm
Exploring Spirituality http://www.mentalhealth.org.uk/help-information/mental-health-a-z/S/spirituality/
Carers support
http://www.carersuk.org/support
http://www.mind.org.uk/information-support/helping-someone-else/how-to-cope-as-a-carer/#.UwIgortvsXg
It has been a great pleasure to share this piece, and if you would like to contact Jayne and find out more about her work, you can connect here
Last week I wrote about my experience of talking to two people who were newly diagnosed. How I felt that even after so many years, there just was not enough support for people facing cancer treatment. Despite our many years of experience, generally, people are still left to face a traumatic time on their own.What really shocks me about that, is when I use my own personal experience as an example.
My diagnosis involved stage 4 incurable cancer. No one knew if I would live or die. Everything I was facing was a totally new experience, and despite the fact I was 51, it was really frightening! That was only the treatment etc, not even including losing my job, income and all the things associated with that. I was introduced to a specialist nurse, who was lovely, but told me so many times how many patients she looked after, so I gave up even trying to talk to her. I decided, that like most things in my life, the only person who could sort things out was me.
But I was equipped for this sort of challenge, in a strange sort of way. I have always worked for myself, and have rarely had to rely on other people, so another system that was inadequate was not unusual. However for others, who might expect and require more support than me, I'm sure the entire experience comes as a complete shock. What makes things worse, as far as I am concerned is that my own issues started seven years ago, and in honesty, although, medically many things are improving rapidly, the basics of support are not!
As I also say frequently, my opinions are based on not only my personal experiences, but also many other people who I am in contact with, either personally or via social media. This week I am highlighting another example of how people can react to a cancer diagnosis. Emily is an incredible young lady who was diagnosed in November 2013 with endometrial (uterine) cancer and colon cancer.
"Tonight, I broke down. I don’t know what exactly sparked it, but tonight everything just hit me like a ton of bricks. It finally settled in my mind. I have cancer. I am going to have to endure probably the most grueling year of my life, and then who knows what I’ll be like when it’s all over? Will be I able to go back to the same line of work that I intended? I know my job won’t be there when I get back. I had just started. It’s not one of those jobs with real job security anyways. They’re not obligated to save a spot for me until I get back like at some other jobs. I’m not on that level yet.
When all this is over, what will I be left with? A few less body parts than I started with, the inability to have kids, but hopefully my life. I probably won’t be able to see a lot of my friends for a while. I won’t be able to be as independent as I want to be. I don’t know what freaked me out so much in particular, but I had one of those deep sobs. It hurt — seeing as I just had surgery last week — but it also hurt because I felt like I was in some kind of box that no one around me could get into. Like no one could quite understand exactly what I was crying about. Heck, neither could I. But tonight, I don’t feel strong. Tonight, I feel sick. Tonight, I feel weak. Tonight, I feel scared."
This young lady has the world in front of her, but is now facing her biggest challenge. What can equip her for the experiences that may lie ahead? Being younger, Emily faces many unique challenges, associated with her age, which us older people don't. She will require very specialist, age appropriate support.
The fear which Emily describes graphically above, is just another example of how a lot of people are feeling when faced with a cancer diagnosis. I wanted to share it, as much for people who have been lucky enough not to be in that position, as I feel it sums things up brilliantly.There is support out there, but it is very hard to find. I also appreciate the issues involved, as every experience is unique, and a generic approach is no longer appropriate. But in many cases, the psychological and emotional fallout from cancer, can have a more negative effect than the cancer itself.
My personal view is that a much earlier support intervention, where required, will improve things for people. I'm sure that is not the complete answer, but I do know that we cannot let things continue as they are. Unfortunately there will be very many more people entering the process, and they will need some help.
What was your experience, on diagnosis? How were you feeling, and what help did you find? Please feel free to share your experience with the readers. You can also join us on Facebook here
If you would like to read more about Emily, you will find her blog here
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
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.
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?
Normally, I like to have my new blog post written and launched by Friday each week, but since the increase in my treatment regime, and prior engagements made long ago, this week and next are particularly difficult and will find me writing at the w/end. However, another reason for my time issue, is that I have had contact from 3 people, who I have encountered in very different situations, and have asked for various forms of support with their issues.
This prompted my thoughts for this post. All of these people are unfortunately, 'experienced patients,' with family, friends, and medical teams around them. However they have chosen to contact me, regarding their issues. I wrote last year that it was 'time to look at the ways we offer support' but I also wonder if some of the support we need as patients, is just not there at all? Maybe we don't even know what we need?
Giving and receiving support is extremely difficult in a lot of cases, particularly when something like cancer is involved. There is no rule book, to guide either party. You as the patient, don't really know what you need until it becomes apparent, and your loved ones/friends can't understand what you are going through. Also if you are anything like me, you hate asking anyone for anything!
Experience has shown us that most people don't feel comfortable discussing certain concerns with either their clinicians or loved ones, for a fear of 'burdening' them. It is also extremely difficult to have to admit to people you know well, that you are finding things tough. Particularly if you are the person that people normally look to when times get difficult for them!
I have met a lot of people affected by cancers similar to mine, and many that have gone through a stem-cell transplant, like mine. However I can say that without question, everyone's situation has been unique. Personal circumstances, treatment regimes, health prior to diagnosis, complications after treatment, and the psychological effects on them from the whole process.
The word support means different things to us all, and we can offer it in different ways. One increasingly common method now, is by giving information. Surveys have shown that informed patients are more likely to take control of their care pathway, which will result in improved outcomes. This is great, but speaking personally I do not feel supported at all, by a handful of booklets! This is only a small part of the story. Knowing what may happen to you, and what the treatment is likely to do, is helpful, but also frightening. What do you now do with that information?
As my life has taken me in this direction I spend a lot of time in the company of people affected by cancer. Not only patients, but professionals, family, friends, and organisations working to improve things. I also have a lot of communication with people who contact me via social media. I am still shocked, how many people cannot find the support that they are seeking.
Why is this? Possibly, because what we require, can change from day to day. As our world goes through the 'high-low' process, our needs are constantly changing. Many things that occur for us, are outside our personal experience boundaries, and we have no 'back catalogue' to drawer on.
It seems that my personal experience, is the major qualification, in the support process. One of the reason's that I started doing the work that I do, is that I 'get it!' Much as people tell me about different schemes and projects that are starting, or already exist, there is no credible 'official' system that caters for what is required.
Maybe, a chance conversation, or a blog post stimulating your thought process, may prompt
the support you have been looking for. Social media has opened up the support arena greatly, and there are millions of us sharing our experiences with the world. I know I have received huge help from this area.
In summary, I'm very happy to be able to help where I can, and feel privileged to be invited into very personal areas of peoples lives. Unfortunately, I am unable to offer a solution to the professionals who ask, how can we improve things for you guys? I am not convinced that there is anything 'official' that can. Cancer will always create different 'grey areas' for all of us. Definitely a place where 'one size does not fit all!'
Do you feel that you are able to access the support you feel you need?
