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.

Carers, our unsung heroes! Fiona's story

We all know what the word carer means, but many carers would not consider themselves to be one! Husbands, wives, friends and family, are doing what they consider natural, helping those of us that need it. Without their help, life would be, in many instances, impossible.

In my own case, ever since I was diagnosed, my wife has swung into action, taking care of everything that I couldn't manage at times. Putting up with my awful moods, sorting out my medication, and at times dressing me and driving me to appointments. She is there for me during my dark times, and she has sacrificed a lot of her life for me.

Cancer now dominates my life, whether I like it or not! With my own health being constantly monitored, I use my spare time helping others, whether it be through my blog or face to face. Sue lets me do that without a word of complaint. She ensure that the household wheels are well oiled, and I can concentrate on what I need too.

I know from the work I do, that many of us, could not get by, without that  'special someone.' My wife always says that behind every good man is a good woman. I also know many ladies, who have a special man behind them! Most of my work involves cancer, but carers are involved with many other different issues.

 

In this post, Fiona, would like to pay tribute to her husband. She has also been so moved by the work of carers, that she has decided to help launch an award, to recognise the outstanding work that carers do.

Fiona's story

"When you are laid up in bed for a couple of days with flu or a nasty cold, the washing can wait, the dishes can pile up in the sink, you’ll be back on your feet in a couple of days and you will get to everything then.  But what if your illness was ongoing or would take months to recover from, how would you cope then?   This is the situation my husband and I faced when in 2005 I was diagnosed with breast cancer. It wasn’t myself I was concerned about, however. I had a five month old baby - how were we even going to begin to look after him? Well we did, and that is what thousands people do every day in the UK. According to Carers Week, every day 6,000 people take on new caring responsibilities in the UK. My husband became my carer, not something either of us had envisaged happening in our 30s!

When my husband and I first met we were the party couple never at home, always out at some party or other. When we had our son we settled into a new life enjoying time with other parents of young children, lots of socialising but no more late nights.  Then I was diagnosed with cancer, and this hit me incredibly hard. One minute I was a new mum running all over the place, taking my baby to yoga, baby massage, music, the list was endless. The next I was unable to get out of bed as the side effects of the treatment started to kick in.  My husband cared for me and our baby, making up the baby’s bottles and food for the day, and making sure there was always something nice for me to eat if I felt hungry, which was constantly, for the three day cycle I took steroids!  All this before going to work, and he was getting up in the night to see to the baby too.  I look back on it now and think how on earth did we ever get through it? But you do, there was nothing else we could do. 

The thing with becoming a carer for a loved one is that it is never something that you ever in your wildest dreams would plan for - there is no training beforehand, you just get on and do it.  For this reason, carers can sometimes be the forgotten ones. The focus is all on the person with the illness or the condition, the carers just quietly get on and do the necessary things.   I guess thinking about it, at the time I never considered my husband as my carer, he was just looking after me and our son because I wasn’t able to, but he was my carer and if he couldn’t have done it, we would have needed someone to come and look after us because I most certainly wasn’t capable. 

 

My experience of being cared for is one of the reasons why through Insurancewith we have launched our “Who Cares Award” looking for the UK’s most extraordinary carer, there are full details of the prize and how to nominate someone you think deserves the award in my blog.  The Award presentation lunch will take place on 12^th June 2013, which is in the middle of Carers Week.

Carers Week is a fantastic awareness campaign aimed at improving the lives of carers and those they care for.  They do this by among other things helping the public identify themselves as carers and access support, information and advice.  This year the theme is Prepare to Care, it will focus on how the UK’s current carer population is coping, how effectively Government is supporting the growing numbers of carers, and whether the wider population is prepared for future caring responsibilities.  If you want to share your experiences as a carer with Carers Week, you can do this on their website

I am one of the lucky ones and I only needed a carer for 18 months, there are many thousands of people out there who spend their whole life caring for someone.  So if you know someone who you think deserves the “Who Cares Award” please nominate them and please also support Carers Week when it come around, this year it’s 10^th to 16^th June."

I would like to thank Fiona for sharing her story, and her awards campaign with us. Wouldn't it be lovely, if your 'special person' won an award? All you have to do is complete a form!

Do you have a story you would like to share? Please feel free to get in touch, by leaving a comment of catching me @christheeagle1 on Twitter








 

All about the journey, not the destination.

I am writing this post just before I am a guest speaker at European Bone Marrow Transplant conference(page 7+181)  in London.So I thought that it would be an ideal time to write about how I got to this stage.

When most people talk about their association with cancer, they generally use two expressions.Either their fight/battle, or journey. Personally, I rarely use 'fight,' as I feel that I am just doing the best I can. My preferred word is journey. I guess it is not so much a journey, as it is a 'mystery tour,' as we never actually know where we are heading!

During my life before cancer, I always felt that I knew where I was going. My goal was to reach a healthy and wealthy retirement, enjoy some sunshine and have quality time with my family. I had got on the right train, and even with a few of life's 'diversions' we were still heading towards my destination. Then came my diagnosis.The train then left the station without me, having abandoned me in a place I didn't recognise.

Where am I heading now? I really don't know! Every day is very literally a bonus. I try to spend time doing things I enjoy, and things just happen. This part of my life, is more about the 'scenery,' than the speed and destination of the journey. I don't know where I am going, so I guess I won't know when I have got there, but I am going to do my best to enjoy the ride.

I was just 51 when I was diagnosed, and my 52nd birthday was not a possibility at that stage. Next month, I am 57. After transplant, I was unable to continue with my work, and I stopped earning money. A very unfamiliar place for me. In fact very frightening, but life provided other benefits.I don't have any big expectations anymore, which makes life a little easier. No sales targets, no promotions, no deadlines, no career to nurture, not even the eternal chasing of money. I don't even worry about next year.

It feels like I am 'drifting.' Will I get sick again soon, will something good be happening? Most of it is out of my control, as have the last 6 years of my life been.But let me look into some of the detail, of my time with cancer.My one driving factor, was 'to give something back.' Once I started volunteering, life took on a new meaning. My health has been consistently poor, but outside of that, life has been kind to me.

My work has led me to meet many wonderful people, both patients and professionals. I am also privileged to be part of decision making in several organisations.I have won awards, met Prime ministers and celebrities, and my blog has introduced me to people around the world. There has even been a television programme made about my work.Yes, crazy isn't it?

None of those things were in my original 'journey.' Now I am due to be standing in front of some of the worlds finest clinicians, talking about my expertise, 'Social Media.' How could I have even begun to try and plan a journey like that?

 

So it seems that if I take my hands off the steering wheel, life deems to take me in a positive direction. It can't be as easy as that, can it? I don't even feel that I am in the front of the car anymore. I am very much a back seat passenger. Just looking out of the window enjoying the scenery. Where am I going, what time will I get there, or will I ever arrive at all. Who knows??

It seems that my old life was lived on a motorway, and my new life, on country lanes. I know that I have a different destination to the original one, I just don't know where it is!!

How is life for you? Do you prefer journey or fight?

Loneliness, the side effect with no cure

When I started this blog, I mentioned the feeling of loneliness that can play a big part in the lives of people affected by cancer. Today I want to go into a bit more detail about that, with some examples. Like a lot of things in life, it is hard to imagine, these effects unless you have experienced them yourselves.

As the regular readers of my blog will know, I have a wonderful family and a large, fantastic group of friends. I am involved in numerous projects weekly, plus I am still having regular treatment. So there are very few times that I am truly on my own. Yet there are many occasions when I can feel lonely. That doesn't make sense I can hear you saying.I know it sounds crazy, but I am going to try and explain, now, how that works.

Ultimately, all the things that are happening to me, both physically and mentally, are things that only I can deal with.Sure, we can talk about them, but I am the one who has to decide. So many decisions to make, and even though there is so much information around, which sometimes can confuse matters, the decision stops with me. Have I made the right choice?? How will this impact on my life, and my family?

Making treatment choices, sitting with drips and machines for hours on end. Taking drugs, day after day and wondering what sort of effect they are having on your body. Those are only thoughts that you can imagine, unless you have experienced those things. Hours and hours of hospital visits, numerous discussions with doctors and health professionals, about your prognosis. Weighing up the pros and cons of your treatment. Will it make you more sick than the disease? What will your quality of life be afterwards?

When it comes to the the physical treatment, it is only the patient that can deal with the chemotherapy, radiotherapy or surgery, and also the fallout from that. Everyone can be with you on your journey, but you are ultimately on your own, with most of the major stuff.

" Of course, this doesn't come with any guarantees, Mr Lewis" .That's a common thing I hear. I know that only too well, but I still have to make a decision about what to do next. It is like a game of chess, that I play in my brain. Just when I think I have got myself into a winning position, the opposition seem to pull out an unexpected move. Have I done the right thing, so many questions going round and round.

Coming away from the disease angle for a bit, and even social arrangements can be quite tricky at times. People want to support you, and maybe go out to dinner etc. But you are feeling tired, you are on a regime of drugs etc and therefore you have to make special arrangements, and there are times when you feel that you are the odd one out. You are being a pain, by wanting to leave early.

Even things like holidays are very difficult. Even if you are well enough to take one, there are all the issues, around holiday insurance, before you even start. Then, do you have the energy to do the things that everyone else would like to do?
Can you go to a warm place, sit in the sun, have a few drinks or go to night clubs? If you are lucky, maybe one or two from that list.

Work can be another problem area. If you are lucky enough to be able to continue your work, after illness, do things feel the same. Do your colleagues react to you in the same way they did? Are you able to still manage the same job you did? Just some of the issues you may have found if returning to work.

What about if you have been sick longer term, and have lost your original job? How will prospective employers view your illness? Where will your application form and CV sit in the queue for a new job? We all know what the law says, but what are the facts? I know very, very few people who have had long term illness and managed to find their way back into meaningful employment.

It starts to feel that you are the only one that has all these issues. In most cases, everyone is very supportive, and understands things to a degree, but It can feel like you are the odd one out. All your friends are working and having fun, living what might be classed a normal life, and there you are thinking about every small step of every day.

One common side effect of all this, can be sleep issues, A lot of my fellow patients struggle in this side of their life, and it can work two ways. Either, you are so exhausted in the day, that you are constantly tired and fall asleep quickly. Or like me, your mind can be so active during the day, that it struggles to shut down at night. Unfortunately, to ensure that I am able to sleep, I have to have sleeping tablets. Before this, I was awake continuously, night after night. My mind found it impossible to close down of it's own free will. This was an issue, not only mentally but physically too, as your body repairs itself while you sleep. Therefore if you are not sleeping correctly, you physical improvement will be a lot slower.

Hopefully I have been able to get across, some of the ways that people affected by cancer can suffer from loneliness, even though they appear to be surrounded by people.

If you are unfortunate enough to suffer with a long term illness you will be aware of many of the things that I have mentioned above. In fact you might have experienced other things, which I haven't mentioned, and that you would like to pass on to other readers. Please feel free to add your own experience in the comments column, as we can all learn from each other.