We leave our footprint wherever we go!

I liken myself in many ways to a butterfly. A typical week for me involves meeting a lot of different people in many varied environments, also communicating frequently through social media with people from around the world, on many contrasting subjects. I know a lot of people, and a lot of people know me. In fact strangely, I know many more people now, than when I was travelling the world for my work.

We live in a very fast moving society, and time is always at a premium for everyone, so the butterfly analogy comes from the fact that, although I communicate with so many people, very little is in depth. On many occasions it may be a brief, "hello, how are you?" but a lot of these people I see frequently, so there becomes a familiarity to the relationship.

 

 

The reason for this weeks post is that I was extremely moved by a gesture made to me by one of my fellow patients, which prompted me to think about life, for the entire duration of that session, (approx 4 hours.) As most of you may know, we are in the month of Ramadan. On my rota of treatment, is a Muslim lady who speaks very little English. When we see each other, we wave, and wish each other luck. There seems to be a universal language that everyone understands, when you have cancer!

As soon as I walked into the room, I acknowledged everyone, but her face lit up and her son rushed over to me with a bag. This bag contained a bottle of beautiful aftershave, to celebrate Ramadan!! Wow, that absolutely blew me away. What a lovely thought.

At the end of my session, one of the staff approached me and had seen what had happened. She told me that so many of the patients and staff within the department ask about me. I had no idea. She explained the positive impact I had on everyone. My interpretation was, I came to the ward, said hello to everyone, settled into my chair, and listened to my music. Ok, I did do a bit of chatting :) But that is just my way.

If I am honest, I have not really consciously considered the impact that I may have on other peoples lives, for a long time. Maybe stretching back to when I was learning my trade as a salesman. Then, my income depended on it, so I always thought long and hard about my approach to customers. Even then, I never considered talking to people a 'science.' Be polite, show a genuine interest in the person you are talking to, and make them feel comfortable in your presence, were my basic rules. I use the same ones when engaging on social media.

 

 

 

These days we tend to have very little time for reflection, in our day to day lives, and I doubt if many of us even think about the effect we may have on other people, as we go about our daily chores. If I was working, I probably wouldn't either! But when I dig deeper into my own relationships, there are always certain people I am happy to see or hear from, as often as possible, but others not so.

We are all different of course, it's a wonderful world with the variety of people, and we reflect our individual personalities wherever we go. Of course it is impossible to be 'all things to all men,' but all relationships need some give and take, and work best when both parties do a bit of each!

The 'cancer world' has introduced me to so many incredible people, both professionals and patients. It has placed me into situations I have never ever experienced, and I have had to do things in the way that I consider to be right. It is like learning a new business, and starting as an apprentice, but it seems that my basic principles of communication have served me well.

We get very little time, to make an impression, and people are very quick to make up their minds about us. My aims is always to try and leave a positive memory. Are you conscious of the impact you may have on other people?

Are you a 'guilty survivor?'

On Monday, I had my usual monthly review with my Consultant. I have always thought that these meetings may be too frequent, but the professionals are right, and generally there is something that has occurred since the last meeting, and will need correcting. More medication,and different blood tests.

It is always a good opportunity to catch up with my fellow patients, and staff. Also, if I didn't visit the pharmacy for my drugs, they would wonder what had happened to me! A lot of the staff in my hospital, read my blog, and I am often told, that they learn so much from it. On this visit I was approached by a senior health professional, who wanted to chat.

He mentioned that he personally, was learning a lot from my writing, and felt that the N.H.S in general, was not really taking the benefits of social media seriously. Although he agreed that neither he or his colleagues, used it, or knew much about it. I was explaining how people around the world were interested in reading about the highs and lows of my life with cancer. I explained how my own case, could give people hope. He understood exactly, the benefits of my blog.

 

My case is very unique, starting with a rare diagnosis, then followed by many ongoing complications. I have had, and continue to have, many surprises along the route, but as he pointed out, the biggest of all is that I am still in remission, after 6 years!

As some of you will know, I have recently lost some friends, just after they had received their stem-cell transplants, and have others that are struggling with their health since, and I mentioned those people. As I always say, the difficulty with cancer and it's treatment is that they are very individual. One person's experience, although useful, is not necessarily a guide, as to how your own process will go.

I was then asked if I was a 'guilty survivor?' It was the first time I had heard that expression, but I do think about things like that frequently. Apparently it is a well know issue, and affects a lot of people. This really set me thinking! Personally I don't consider that I am, but I do often wonder, how I am still here, and others, whose cases seemed more straight forward than mine, are not.

"Why me?" is a question that is often asked, both by people who have been diagnosed with cancer, or people who are surviving, when others don't. I have never asked why I got the disease, but I do often wonder, how I have made it this far, when the odds were stacked against me. However I wouldn't say that I felt guilty about it.

 

Until, I was told that this is a common issue, I can't really say that I have encountered many people who outwardly feel like that. I suppose it is possible that people don't discuss it. The many people that I am in contact with, all seem very aware of their individual situation, and we all hope that each other do as well as possible. We know what may happen, to any of us, but I would be surprised if anyone suffered from guilt.

This was one of the very few visits to hospital that I have had where a professional has had time to discuss some of the 'grey areas' around my case. These are the issues that can make so much difference, to people holistically. Having said that I had felt guilty for taking up a bit of time! I couldn't help feeling that if professionals managed to find some time to get to know us better it might help us all. Time seems to be our modern day enemy.

Are you, or do you know a 'guilty survivor?'

How we look is who we are?

This post has been bouncing around in my head for some weeks. I guess it was prompted by Angelina Jolie, but something I had been thinking about for some time. Also it was pointed out that in this sector, there are few males, writing, and the perspectives are very different, so it is interesting to hear things from the male side of the fence.

Recently there was a furore when a commentator at Wimbledon, passed a personal opinion on the looks of one of the female competitors. This produced a massive reaction, calling him sexist etc. But it highlighted for me, the importance that we place on our looks. Not only how others see us, but  more importantly how we see ourselves. There is no truer saying than, 'beauty is in the eye of the beholder.' We would all like to see ourselves as attractive, and hope also, that others might see us that way. Thankfully for us all, we are attracted by different things. In my eyes, that makes us all attractive to some people, in some way!

When watching TV or reading magazines, I see actors who have had 'work' done. Teeth whitening, hair transplants/extensions, Botox, nips and tucks everywhere. It is now so common. Faces are often airbrushed in advertisements. Is this because people feel they are unhappy with their appearance? Are we seeking to look forever young?

I saw a tweet a few days ago from a young lady, who had just been diagnosed, with cancer and would require chemotherapy. Her comment was that she was determined not to  " look like a cancer patient." I wondered briefly, what her vision was?  Which leads me nicely into thinking about how our appearance during illness, can be even more important to us.

Those of you who know me, will be aware that I have always been reasonably relaxed about my appearance. Never really a snappy dresser, mainly a casual guy, but would always wish to be seen as 'presentable,' particularly in female company! However, I was distraught at the ravages of cancer and it's treatment on my body.Fat, skinny, with hair, bald, yellow, pale, and any combination of those. When I looked in the mirror, I felt worse than I did before. Even though I was fighting for my life, I was concerned with my appearance.It felt that my body was actually reflecting the way I felt physically.

We can argue forever, whether we live in a sexist society, and if that is right or wrong. I suggest we do, and I am fully appreciative of the ladies out there, and the importance of looking and feeling good. My work and personal experience has shown me close up, some of the massive emotional and psychological issues that are faced by people going through cancer. I have been involved in numerous conversations regarding the pros and cons of surgery, and how life would be affected afterwards. For several, it was a close call between their appearance and  long term health.

Thankfully things have progressed in recent years. There are now more options than a basic N.H.S wig, if you are losing your hair. Even newer treatments, to stop hair loss in certain cases. A lot of  companies have specialist staff to help with clothing and lingerie etc after any breast surgery. Even whilst in hospital you maybe offered some complementary therapies, to help you feel a bit better. There are now also a lot of specialist products to help you with some of the side effects you may experience with your skin etc. 

I have only touched on a few examples of some of the ways we may be affected by our disease and it's treatment. The point I would like to emphasise is that to most people, their psychological and emotional well being is linked to their appearance. My experience has shown me that this is more prevalent in ladies but affects us all to some degree. If we are not careful we can get on a downward spiral, particularly in the early stages of treatment, where our physical changes may be more apparent.

In my own circumstances, it seemed that what I saw in the mirror, was very different to how I was seen by everyone else. My perception of things was worse than reality. Everyone was kindly insisting that these things were trivial, and that things would improve. Some of them have, but some not. However in the grand scheme of life I have learnt to be happy with how I am now. Even when I was healthy, there were still things I wasn't happy with, and that is still the same today!

My thanks go to Jennifer Young, who inspired me to write this piece. Jennifer has got a fabulous website with lots of information and products created specifically for people going through cancer treatment.Please check out her fabulous site and you can find her on Twitter @JenniferSkin

Fatigue can be hard work!

Just as I suspected last week, I find myself writing a new post, on a Saturday, ironically also the hottest day of the year so far in the UK. The reason for this is that I have had either medical or working appointments that have completely filled up the last two weeks. All of the good stuff were 'one off' opportunities, that wouldn't come again, so I decided to commit to them. Luckily, my health held up and I managed to do some very interesting and fulfilling things.

In many ways, it has felt like the 'old days' (before cancer.) My life was never boring, different people and places everyday. There was always a new challenge to look forward to. The major difference now, is that I have to make allowances for my health. Something I never even thought about before becoming ill.

Due to my illness, life planning has become tricky, but with the exception of something unexpected turning up, I am able to organise things. I am now aware of what I can and can't do, and how long I can do it for. I know when I need to rest, to make the most of my time. My life is a continual balance of both drugs and time. If something happens to upset the equilibrium, I have to be careful.

 

One thing that is a major issue for a lot of people with long term health conditions is fatigue. It is very difficult to find the cause of it. Is it because of chemotherapy, radiotherapy, a long term regime of drugs, the psychological/emotional side effects of your situation, or a combination of all? Who really knows, but the effects can be very debilitating.

Fatigue, affects us both physically and mentally. Sometimes the physical effects are obvious in our appearance, but often they are not. Some of us are lucky enough to avoid the dark circles/ bags under the eyes, the 'lived in' look on our faces, the wrinkles that start appearing. I guess, I could put all those things under the premature ageing process. If people see clues of fatigue, they might have a slight understanding of what is happening for you.

However the issue is if you are looking reasonably well! When people see you looking ok, they seem to think that you have somehow got better. From discussion with many of my fellow patients, they find it tough, in a social environment. Not because they don't enjoy socialising, but because it uses up a lot of energy.

Each of us has a public and private persona. When we are in public, people expect us to be, the person that they perceive us to be. If at times we are feeling unwell, people really don't want to hear that, so you expend a lot of energy trying to be as natural as you can. They expect you to join in with all the social chit chat, which on a lot of occasions is tough. Being unusually quiet and withdrawn, seems to encourage more people to start asking questions, and the process continues.

The alternative to this scenario, is to not accept invitations to do things. This in my opinion will only make things worse in the longer term, as you may become more withdrawn. I find it particularly difficult to strike a balance, as previously, I was a 'social animal.' There was nothing I used to enjoy more, than being in the company of different people in different environments. Now, I have to think about an invitation. How long is it for, what will I be doing, what time will it finish?

Unless you have experienced fatigue, it is very difficult to understand it's destructive effects. It is much more than tiredness! Some is caused by physical issues, IE blood problems, or treatment issues, but another major cause is mental. If your brain is like a fog, it can be very difficult to function properly. Even thinking straight can be exhausting.

 

Just 'being you,' can be more difficult than you might imagine. There are days, when you just don't feel able, to put on the 'public mask.' Here I see another benefit of social media. You can still be in contact with people, without the effort that face to face contact can become. Please don't think that I am suggesting that it is a substitute. In fact far from it, more complementing our lives. The importance of communication, and sharing experiences, cannot be underestimated, in whatever way we can manage it. 

In my own life, it is the many invitations which I receive, that motivate me, and get me out of bed in the morning. Although at times it is difficult. I could easily find all sorts of good reasons, why I shouldn't, but my family and friends gently coax me through. They understand the 'new me,' and don't get upset that I might want to leave early, just happy that I went in the first place!

I am lucky, being surrounded by very supportive people in all areas of my life, who now understand the issues of fatigue. But it has taken us all a long time to get to this position. I couldn't imagine life with out my 'team.' This often makes me think of people trying to deal with these sort of issues, without that kind of support. You can't just take a tablet, and they will be gone. It can be as destructive to your life as the disease itself.

These kind of issues seem to fall into a 'grey area.' They can effect everyone differently, therefore there is not a simple way of dealing with them. The concentration  is rightly on the disease, but the side effects seem to be forgotten at times. 

If you know someone affected by cancer, it might be difficult to understand, but at times, it can be tough for them, just to be the person you think they are.