Sometimes it's hard to look in the mirror.

For the first time since I started this blog, I thought I might be suffering 'bloggers block.' Not as painful as it sounds! Nothing had really grabbed my imagination, but then I received two 'tweet pics', from people who are going through transplant, and bumped into a lady in clinic who I hadn't seen for ages.

I struggled to recognise any of them. With a combination of the drugs and treatment, they were going through, their physical appearance had changed dramatically. All three had lost their hair and a lot of weight.Despite my own personal experiences, and knowledge, I am always shocked to see the effects of that on the body.

Changing appearances, is a common issue for people with long term illness, and I had written the below piece last year. With what I have seen this week, I felt that it would be appropriate, to re post it now.

 

I  have been talking to a lady, who has been suffering from a disease very similar to my own.Until her diagnosis she enjoyed a very normal life. Now, her life has been turned upside down. I have got to know her, as she was introduced to me, because she wasn't sure if she would have a stem cell transplant, and wanted to talk to me about some of the possible side effects, and how life might be for her afterwards.

One of the things that was important to both of us, was nice holidays. She told me that she was very proud of her figure, and that she couldn't wait till her summer holidays came, and she could wear her bikini.She always looked after herself, and her appearance is very important to her.I did explain that the transplant regime would be tough from that perspective.She decided to proceed with the transplant, as in honesty, there was no other realistic option.

We both agreed that it would be one of our ambitions, once all this tough stuff is done, to go on a lovely warm, luxury holiday. I have only been able to go away to foreign climes for one week, in the last five years, so I am looking forward to it too! When we spoke yesterday, she was in hospital, suffering from GVHD of the gut, being unable to keep any food in her system. Her hair is starting to grow back, but she has lost a stone in weight. She is now on a high dose steroid regime of treatment. Again, we talked about holidays, and appearance, during treatment.

My 50th birthday party

 

 One major side effect of cancer and it's treatment, is the possibility of your physical appearance changing. At times, those changes can be quite dramatic. These can certainly have a long lasting effect on you both psychologically and emotionally. If this happens it can also affect your libido, which can create relationship problems.Obviously, where surgery is involved those changes are permanent.

Like most people, I was aware of my own appearance before illness, and I always struggled with my weight. That was the one area that I would have liked to have changed. I did work quite hard at times but without any tangible reward, so I accepted my look, after all it was me!! But after diagnosis, there followed a roller coaster of appearances. So many, that at times, I was frightened to look in the mirror, in case I didn't even recognise myself.

 

When I was first ill, my body blew up, like a football. Then I had my regular chemo sessions and lost a lot of weight. I had my transplant, and couldn't put any weight on. I then got sick and needed high dose steroids, which gave me large face and stomach. My weight was going up and down, and because of the steroids my water retention was high and I looked permanently bloated. To add to this, my hair was coming and going with the drugs. One minute I had hair, the next I didn't. Once I got GVHD on my liver, all of the above happened plus, I turned yellow!!!

Working during chemo (51)

Not a great look eh?? Couldn't now imagine myself appearing in an episode of Baywatch. Most of my muscle definition has disappeared, as I have been unable to exercise. After this experience, I have become much more accepting of my situation. I try to make the best of how, things are. After all I am lucky to be alive.

I have now built up, a 3 size wardrobe of clothes. M, L + XL. Currently, I am stable in medium, and have been for some time. I have been told that any further treatment, should not involve steroids as my body will have overdosed on them.

If I wasn't the kind of man I am, I think I could have been broken, but I have always managed to see the funny side of things. I remember when my youngest son came to visit me in hospital he told me that I looked like Mr Potato Head, (a childhood toy) My eldest said I looked like a bouncer, because I had no hair, and a very large neck.

I can see that these issues may effect women psychologically, more than men. After all, we all like to look our best. But with factors beyond our control, it can be very difficult. Like all side effects of illness some people deal with it better than others, but It is certainly one of the toughest challenges I have faced. How to accept your ever changing appearance?

Have you been affected by any of the above issues I have mentioned? How have you dealt with them?

Life wants to wake us, when we start to dream!

Normal service has been resumed in my life. Conferences successfully completed, and treatment has recommenced. Actually, there is a lot to be said for routine. You know where you are with it! Like a comfy pair of slippers. The odd incident of excitement is enough to stimulate me through 'normal' now.

Maybe that is an age thing, possibly my health dictates that now, as excitement was a major motivating factor in my life. Always pushing the boundaries, and trying new things, normal was boring. Now I think twice before going to a different restaurant! I don't really know how that has happened.

Visiting hospital for two days, gives me the opportunity, of meeting yet more inspiring people, and always starts me thinking. Now, after 6 years, I am a 'veteran,' and nothing much phases me anymore. However I am still very moved, when I see people that are newly diagnosed. I guess I was the same at that stage, but the look of 'fear' is always apparent.

I was sat next to a lady who just burst into tears, and was clearly distressed.For a minute, I felt awkward, which was unusual, as I needed to think briefly.But the result was my usual response. I struck up a conversation. To summarise the situation, the most upsetting thing for this lady was that because of her illness she had been made redundant. A career was her raison d'etre.She had even decided to give up having children to follow her dream.Now that had been taken from her!

 

 

This type of story is an all too common one. Not just involving illness, but life in general. It feels that just when things appear to be going nicely, something seems to come along and spoil it. Mostly it is something totally out of your control. In recent years, we have seen so many things that have changed our lives, that we couldn't begin to imagine, would happen.

Which brings me nicely to some recent events, to emphasise what I am talking about. Just when we are looking to turn our back on a miserable winter,and enjoy the oncoming summer, we have the tragic events in Boston.Certainly here in the UK, the thoughts of bombings were in the past.Just when we thought we could go about our daily lives, with an air of normality, we start to feel unsafe again. All that stuff is back in the headlines and it feels like any progress made, has been lost.

Another thing that has happened this week in the UK is a sporadic outbreak of football violence. Images,of hate filled thugs, fighting each other on the streets of England. Again, this is another thing we haven't seen for sometime, and I am sure everyone connected with football, felt, had passed with the passage of time.It seems not.

My own life shows similar trends too. When things were going well, I got sick. Started to get used to my new life, I got sick. Nice things start to appear on my horizon, yes, you guessed it. I get sick. However, I managed to do my recent 'good stuff,' and treatment is going ok.There are some really exciting things beginning to appear, like new buds in spring. The weather will get kinder (hopefully) and I have many reasons for optimism.

 

 

Life certainly needs a degree of planning, or nothing would happen, but more and more I see the benefits of 'live for the day.'We know from experience, that tough times will be coming, it's just a matter of when. So, try and live your dream and appreciate it whilst you have it, as the alarm clock of life will ring before you are ready!

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?

Life after cancer, for a young person. (Samantha)

One of the biggest things that I have learned, since I was diagnosed, is that outside your circle of family and friends, it is extremely difficult to find emotional or practical support to enable you to start living again.Once you are diagnosed, you have a new 'life companion.' If you are lucky enough to get into remission, it is very difficult to feel that you have completely broken your association with the disease.

I have been talking and blogging about these issues, as I feel that they are rarely mentioned to patients.Cancer has totally turned my life upside down, and I was a very competent and confident person, before this process started. It now feels that I have been thrown into a pool without being taught how to swim.

Yes, everyone has sympathy with my situation, if it was a currency I would be very wealthy! But without the support of family and friends, I really don't know where I would be. Once your health becomes unreliable it is very difficult to live anything approaching a normal life.For example, holding down a demanding job. Finding a job that suits your new circumstances or even gaining employment at all.

I was interested to read an article in The Telegraph that is now talking about these issues, and how our N.H.S needs to change. Apparently there are 1.8m people living with cancer in the UK but only 25% of those felt they had adequate support.

Research also found that cancer survivors are 37 per cent more likely to be unemployed than those who have not had the disease.

Under the new plans, those recovering from the disease would also be given access to information regarding employment rights and benefit entitlements.
Ciaran Devane, Chief Executive of charity Macmillan Cancer Support said: “We need to change the way we respond to people going through cancer: all of a sudden the treatments stop, and too often people are left feeling they are on their own, and fearful about the problems they are left with.”

He said cancer survivors, especially men often found it difficult to discuss the impact of the disease on relationships and intimacy, but were often relieved if the opportunity was offered to them.

At last it seems like our society is beginning to understand the issues.In many respects, I am lucky, I am in the autumn of my life, not seeking a career, my boys are independent, and I am able to get by financially. But how would I see things,if all of that was in front of me?

I featured Samantha's story of diagnosis and treatment, a few months back. The issues for young adults are totally different.We need more awareness of the issues that our children face, and it was great to hear in her own words how she felt. Now, there are different issues facing Sam!

"What next? – 20 years old and facing the world after cancer.

So you’re in your late teens early twenties and you’ve got a cancer diagnosis. You try every day to live as normally as possible, you want to go out with your friends and party, you want to fall endlessly in love with someone who acts like the sun shines out your ass, you want to find a job or go to university?

We all had a plan before diagnosis. There’s no denying it! I’ll admit I was lost but deep down I knew there was something out there for me, the navy, a part time job, going back to college, training, retraining. I didn’t know I had cancer but things weren’t going my way anyway and I was feeling down in the dumps and acting like my world was crashing down around me just because I couldn’t get a job. Then BAM Hodgkin’s Lymphoma, the lumpy icing on the cake.

Since that dark and damp summer last year, I’ve battled with cancer and rather than feeling like there was a fog around my life constantly I sometimes felt bright and good, especially when I was writing my blog. I’ve had setbacks, I thought after chemo I’d be done, I ran a blog that I closed down due to being accused of faking cancer (ludicrous I know! But unfortunately people do actually do that), I’ve lost friends and fallen out with family on the odd occasion. But here I am nearing the end of my journey and ready to get back out there and face the world! …

Or am I?

I have my college degree in sport, few credible GCSE’s and never held a job past the trial period due to my health.

So what now?

Currently I am on benefits which I’m not entirely proud of. I’m thankful for it but I don’t want to live off the hard working peoples taxes forever.  So here we think about where can I find a career? What do I want to do? My naval dreams dashed by diagnosis and a lack of experience in anything. I could easily volunteer and gain valuable experience but here again arises the problem of income, I could retrain or go back to college but again where’s my income? How will I know that I will enjoy what I’m training to do until I’ve forked out tuition fees for it? (And this isn’t just a problem for cancer patients it seems) Who knows for definite what career they want before they end up trapped or with a degree and a debt they no longer want?

I have considered that I want and maybe need a quiet office job with a steady wage once I’m the right side of remission. My grammar isn’t top notch but I like being behind a keyboard and I like writing. I’ve considered working for charities in any payable positions they may have, because charity has been one of my main focuses during treatment. I’ve considered that I’m a fidget and I don’t like to sit down for hours on end so maybe a desk isn’t ideal.

Luckily for me, I don’t have to decide that today but it’s something I think about every day. I’m 19, it’s difficult for anyone to get a job without experience but how about an individual that has health issues and will need time off? I think CLIC Sargent and the social worker they’ve provided me with (who is a miracle worker sometimes) will help me get somewhere. But what if I’m holding myself back? What if experience is holding me back? What if I won the lottery!? Everyone probably poses these questions to themselves. As a young cancer survivor my question is ‘ What’s the next step after cancer?"

What problems have you faced whilst trying to get your life back on track, after receiving a cancer diagnosis? Old or young, we all face different issues. I would be happy to feature your story if you would like to share. Please just leave me a comment below or catch me @christheeagle1 on Twitter.