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?

The joy of youthful innovation in cancer support.

This week has been particularly busy, as instead of being stuck behind my computer, sending emails and writing, I was doing my preferred work, meeting people. My project work is evolving, and I am invited to see some of the new work going on in the cancer sector. I have also completed a magazine interview, where my opinions were sought on some very controversial subjects. It will be interesting to see that in print! ( My legal team are ready!) To add to that, I have received a very nice invitation to talk to some policy making professionals, so a very varied week all round.

I have mentioned several times in my blogs that I love working with younger people. However, their issues can be incredibly complex. Unfortunately, many will not have been able to develop some of the life skills required to deal with cancer and it's side issues. But what I do find from this group, are fresh, stimulating ideas. They think very differently to me, and don't have so many preconceived ideas. Being always open to looking at problems differently.

 

This stimulates innovation, which is what we require, to keep improving things for people affected by cancer. I am heartened to be invited to talk with people who are now starting to look at new ways we may be able to deal with the psychological and emotional issues that all of us face. We are now in an era when social media will play an increasing role in this. We can no longer rely on the support groups and traditional methods of counselling etc. People are looking at new, more modern ways of gaining the support they require. Something more suited to the lives we lead today.

Social media has given people affected by cancer, a new, very powerful tool. Very quickly, they have learned how to use it effectively, and support networks are springing up across the world. Whilst a lot of us have found our way around by trial and error, many of our younger patients, have been using their skills and experience to develop methods of support, more appropriate to them. What this means is that we can build on this work, and target much more age appropriate support.

I have been very honoured to feature some wonderful guest blogs, from some incredibly inspiring young people. All of which get read week after week by new readers. The style in which they are written, shows a freshness and openness, and an enthusiasm to share their experiences to the benefit of others. The young lady who's work I feature today, is someone I connect with frequently, as we have a lot of common ground with our work. We both work with several organisations and use our contrasting skills to help others.

Becki McGuiness works tirelessly for others, despite her own cancer issues She was honoured, to participate in the opening ceremony of the Paralympics in London 2012. She is an incredible lady and has just produced a wonderful piece of work, showing how poetry and art can be effective in cancer support. Below is a brief summary of why Becki created this project, and also a little of her own personal involvement with cancer.

"I was diagnosed with a benign tumour in 2005 at 18 and osteosarcoma (bone cancer) in my sacrum at 21. I enjoyed doing art lessons whilst going through chemotherapy at University College Hospital London. By creating this book with Fixers I wanted to show others, the positive effect, art and poetry can have, to help you cope with what I call the Big C. The final push to physically get this project off the ground, was when my Dad was diagnosed with cancer in 2012

I hope this helps anyone affected by cancer, to feel that they are not alone. Everyone's experience of cancer is different. Do what feels right for you. You will have good and bad days, you're only human."

I feel very honoured to have a blog link included in this piece of work! My thanks to you Becki, for all you do for everyone affected by cancer.
If you would like to find out more about what Becki does, take a look at her brilliant blog or contact her on Twitter @LoveEire4eva

" Unfortunately, science hasn't caught up with you yet! "

My personal cancer experience has continued apace for more than 6 years. For good or bad, we have managed to keep things going. I say we, because, there are very many people involved in that process, not least of all my medical team, who have kept me alive with their skill, and determination, and no small amount of treatment.

A lot of positive things have happened, regarding blood cancer, since I started.My disease is a rare Lymphoma, (Mantle Cell.) It is aggressive, and generally considered incurable. Survival rates are low, so prognosis is mostly poor. I was given the most appropriate treatment at the time, followed by an unrelated stem cell transplant. If that wasn't successful, my options were limited. However, it seems that things are improving quickly, and it now appears there are new drugs available, which may do good things, if and when I relapse.

Over the years, I know that I have been extremely lucky with my treatment. In reality, I have had more luck, than one man deserves. Although I have nearly lost my life on more than one occasion, my clinicians have always been able to find a solution, to my condition, and I have been allowed the drugs, to keep me alive. Although, recently I was told, by one of my team, " we don't always have a magic bullet," but I always believed they did. Until yesterday!

 

 

Due to some severe treatment I had, several years ago, I lost my taste and smell. Earth shattering for me at the time, but like most things in life, you learn to live with it. Along with all the other things that have slowly been taken from me, I have struggled at times. However my team felt that maybe there was something that could be done, and referred me to a senior E.N.T specialist. That appointment was yesterday.

It was interesting to see a new clinician, as he didn't know me or my case, only what he read from my notes. Firstly, he congratulated me on still being alive, to which I smiled. He then asked me what my problem was, and gave me a very thorough examination. After a sharp intake of breath he said, my taste and smell were gone forever. Yet more casualties of my treatment. He explained that in certain aspects of my treatment, science had been able to keep up with nature but in this instance it hadn't! "Sorry Mr Lewis, there is nothing we can do." That seemed very final, and bought my entire medical situation into perspective. Simply, I am lucky to be alive. 

If I take the positives from my story, I am lucky to be around at a time when medical advances seem to be happening in blood cancers, similar to my own. From a hopeless case back in 2007, things are looking more positive as the years pass. But what if that wasn't the case, and I was unfortunate to have a disease, where nothing much is changing in investment or outcomes?

 

My campaigning, for improvement in cancer treatment/support cuts across all cancers and I was very interested to hear about the work that Lord Saatchi is doing around innovation in cancer treatment. My opinion is, that this work is well overdue. In a lot of instances we have been using the same treatments whilst getting similar outcomes for years. It is exciting that this has now been brought to public attention, and the fact that it is being driven by a very high profile person is fantastic. Naturally there is a resistance in certain areas, particularly the Government, but what this campaign has done, is brought to the table, some of the very real issues that cancer patients can face, and some of the hurdles to possible improvement in outcomes.

There is so much work, still to be done, in the complex world of cancer. The further I get into it, the more issues I can see. But one thing that gets clearer for me daily, is that collaboration in our work, is the one thing that will give us strength. There are many people doing great things out there, but we definitely need a much more joined up approach if we are to progress things in the longer term.

The above are my views and opinions, and it would be great to hear yours. What do you think? Do you agree/disagree? 

"Wearing cancer like a badge?"

Well, this week I didn't have to look too far for the content of this piece. There have been many potential subjects, but some can wait. This one has provoked a lot of outrage in the cancer community, and I wanted to add some thoughts of my own.

I am mostly sceptical when reading/listening to media reports, as generally they are 'slanted,' and often taken out of context. When listening to celebrities talking, I am always seeking a hidden agenda. A new book/record/film to plug. Come out and say something controversial and get yourself back in the spotlight! So I was a little surprised to read some comments from Jennifer Saunders about her cancer experience, that I felt were quite thoughtless to her fellow patients. However at the bottom of the article there was of course a good plug for her new book!!

My question is, were those statements designed to gain publicity for the book, or were they more about her well known forthright personality? Were they said for effect or did she actually mean them? What I can say, is that they have got people talking about Jennifer Saunders again, so maybe they have achieved their goal? Below are the comments to which this piece refers.

Asked if she thought some people keep wearing cancer like a badge, she replied:
'For ever, and I'll give you why-because it is the job you don't have to work for. You get so much attention and if you're not used to that, I bet it can sway you a little. I'm used to it. My job gives me the attention I'd otherwise crave. They must be so p****d off when their hair grows back. And you think," Oh, come on, cancer is so common now." '

 

We now live in a celebrity influenced society. How you define a celebrity is a question for another day! It is always sad to hear of anyone's  cancer diagnosis, but when a famous person comes into the media talking cancer, not only does it do great things regarding raising awareness,but there is always a marketing opportunity. I'm sure that there are queues of charities wanting that person to be an ambassador, or politicians looking to them to favour one policy or another. Also their own personal marketing position seems to improve.

Cancer is a great equaliser. It doesn't discriminate between rich and poor,famous or not. We are lucky that in this country, whoever we are, we will receive the best possible treatment available. However, where things differ greatly in the celebrity world, are the options when you are lucky enough to finish your treatment. We can't all disappear off to exotic places to help our recovery, or do an endless round of chat shows, write books or release new records, to keep milking the commercial cash cow.

A cancer diagnosis changes your life forever. If you are lucky enough, and treatment puts you into remission, you will have to do your best to pick up the pieces of your life. Surgery you may have had, could alter your entire way of life. Above, Jennifer refers to cancer, as a job you don't have to work for. Mmmm, for most of us, it is like a job, but one you don't get paid for! She is also right, you do get a lot of attention, but without it, there is a possibility you might die! I am shocked too, saying that people may feel fed up when their hair grows back.

 

 

When cancer enters your life, you will certainly lose, many things, but a lot of people can also find strength, when they didn't realise they had it. Some people manage to turn such a negative thing, into a massive positive, and their life takes a new direction. Others can be overwhelmed by the whole experience, and may crumble.In the real world, people lose their jobs, houses, and partners, and may struggle for the rest of their lives, because of cancer. They have to live whatever life they have left, around hospital appointments.

In summary, I was very disappointed to read those comments, from someone I have always respected, but if she was inferring that people 'use' their cancer to gain attention, then surely that is what she has done with this interview! I'm sure that it won't be the last time that she mentions it commercially either. Next time I see you on television I will be looking for that badge!

I have attached the full interview here. Generally very insightful

Young people deserve better cancer support!

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

Do you really want to know?

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?

The Importance of cancer support via social media

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.

Do you ever feel lost?

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?

How do you deal with your cancer?

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?