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.








 

#never2young bowel cancer, Hayley's story

One of the great benefits of social media, is that that you can see a lot of up to date information quickly. With Twitter and this blog, I am in contact with people around the world, not just involving blood cancers, and stem-cell transplants, but many others too. I enjoy keeping up with other aspects that I may not be quite so familiar with.

Over time, it seems that I have connected with a lot of people affected by bowel cancer, and I am benefiting from their knowledge and support. Just over a week ago, my Twitter time line went crazy with a new campaign, #never2young. It was raising awareness about early diagnosis in young people. Bowel,is the 2nd biggest cancer killer in the UK, and like many, it is treatable, if caught earlier.

Raising awareness is a passion of mine, so I started re tweeting etc, and I received a massive response from around the world. People wanted to know more! With the campaign building, and Bowel Cancer Awareness month approaching, I asked Hayley, who appears in the below video, if she would like to share her story with my readers.

It is an incredibly moving, personal story, and I am extremely grateful to Hayley and her family for letting me share it with you.

"My journey with bowel cancer first started in June 2011, 6 months before I was even diagnosed. I was 23 weeks pregnant at the time, in the middle of one night, all of a sudden I awoke with an excruciating pain in my left side. I was unable to walk properly and was very uncomfortable. My husband, Paul, called the out of hours doctor. I was told to attend the surgery at 3am. The doctor felt around my abdomen, listened to our baby's heartbeat and all appeared normal. The doctor diagnosed me with round ligament pain. I went home, rested and felt a lot better the next morning, and so thought nothing more of it.

At 27 weeks pregnant, I was rushed into hospital as our baby had stopped moving. After a couple of hours of scans and traces, the obstetrician decided the best course of action was to deliver our baby, 13 weeks premature. Out baby was born on 24th July 2011, named Autumn. Autumn was only the size of a 23 week old baby, she'd stopped growing at the same time I'd had a pain in my abdomen. Two weeks after the birth of our little girl, the terrible pain came back in the same place and I went to see a midwife about it. We could both feel a palpable lump, I was told this is probably due to just giving birth, or a possible bowel infection. I was given antibiotics and the pain went away again. Our little girl survived for 4 weeks, she was incredibly brave, she passed away peacefully in our arms after a second operation on her under developed small bowel to rectify a blood clot. It was and still remains, the worst day of our lives.

Mid December came and I was feeling very low, depressed and exhausted. All of this, I put down to depression. The pain in my side came back and when I pressed on it the lump felt bigger and really hurt. The abdominal pain increased and I was vomiting and having loose bowels, I went to the GP and she could feel the lump in my side. The GP could see I was severely dehydrated so I was sent to the hospital to be put on a drip with suspected diverticulitis or Crohn's disease. After a ultrasound and CT scan, it was discovered that I had a thickening of the bowel lining. The surgical team came to my room and broke the news that they'd have to operate the next day as it was suspected tumour in my bowel. I couldn't believe this. I asked the surgeon whether this was the reason our daughter was premature, he said that was almost definitely the case. I couldn't believe my body had let me and my daughter down so badly.

Luckily, I was able to have IVF treatment before I started my treatment and a few weeks after my operation. Radiotherapy and chemotherapy can make a person infertile so I'm very grateful we have nine embryos frozen!

I had three months of chemotherapy, which was six sessions every two weeks, then I had twenty five sessions of radiotherapy (five days a week for five weeks) then another three months of chemotherapy every two weeks, so another six sessions. The treatment was very aggressive. I was very sick on the chemo, and I was allergic to one of the chemo drugs, so I had to take a lot of antihistamines to get me through it. I did complete all sessions in October last year and after a CT scan was declared free of cancer!

I'm very lucky to be cancer free, at the time of diagnosis, I was 32 years old and a stage 3 bowel cancer patient. It's quite rare, but not unheard of for someone of my age to be diagnosed with bowel cancer. I am currently involved with Bowel Cancer UK's 'Never Too Young' campaign. I feel so strongly that many young people aren't being diagnosed early enough, we need to change this!"

If you would like to hear more from Hayley, you can find her on her own blog

You might also like to contact Bowel Cancer UK for further information.

My humour gets me through!

For most of this winter, I faced my nemesis. Constant cold, damp weather.For a man with the poor immune system that I have, I tremble when watching winter weather forecasts. I seem to stumble from cold to flu,to everlasting chest infection.Finally get rid of that, then the next one starts.Feeling under the weather (literally) for long periods takes it's toll on me, as I try to continue with parts of my life.

I am now towards the 6th anniversary of my diagnosis, and when reviewing the things I faced, there are times that I honestly don't know how I have the strength to continue. I thought of something that immediately made me smile, and then I realised. Only my humour could have got me this far.

This post was written about a year ago, but I realised it is as appropriate now, as it was then, and is still what helps me cope, so I would like to share it with you all today.

Humour plays a very big part in my personality, and always has done. I have always been able to see the funny side of most situations, even if sometimes there doesn't appear to be one! In my life before cancer, it certainly helped me with my work, as everyone remembered me as 'that funny guy' and in a very competitive industry, it seemed to give me an edge.

When I started coming to hospital, I was aware that things were going to be very different to what they had been, in many ways! I was spending a lot of time in waiting rooms, doctors offices, and the chemo ward.How was this going to affect my personality? Was I going to lose my sense of humour and get depressed?

Ironically, that was one of my biggest concerns, not so much my schedule of treatment! What is there to smile about in a room full of people who are very unwell, having very toxic treatment? I approached my first chemo session very quietly and cautiously, after all I was the new boy in town! My idea, was to watch and learn how other patients were dealing with things. It was relatively quiet, some people reading, listening to music, or quietly chatting with friends. Others just sitting there on their own in quiet contemplation.

My bags of chemo were ready, now just the cannulation! Ah, my veins are difficult, here we go! It took two or three nurses to try and cannulate me, with my arm being put in hot water, cold water and eventually sister taking over and finally succeeding. What I hadn't noticed was that people were quietly watching how the new boy was getting on.Slowly people were talking about how they couldn't watch as the nurses tried to find my veins. Very quickly my old self returned and I was laughing and joking for the rest of the afternoon!

At the end of the session, a lady approached me, who's husband was having treatment at the other end of the room. She asked me what chemo rota I was on. I said I was every two weeks, why? (I thought I may have been too loud for her husband, as he was a very quiet man) She told me that her husband was also having treatment for the first time, and he was frightened. But he had laughed so much during the afternoon, he had almost forgotten about his treatment! He then wanted to be on the same rota as me.The nurses also mentioned to me that they enjoyed the sessions when I came, as there was generally a lighter mood.

I will never forget Terry, who was an ex serviceman, who had Myeloma. We met as inpatients. We both complained about our food, and although we were in the same ward, we were in isolation units so we used to ring each other and discuss our days. He would always tell me a joke or two. We always met in the same clinics and the staff dreaded it as we never stopped laughing. Unfortunately, Terry's situation got worse and he was very soon in a wheel chair, but we made a point of meeting and sharing a joke or two. I used to joke with him about having to slow down, as he had his chair.

Unfortunately Terry passed away, and his wife asked me to come to his service of celebration. Everyone had to wear bright colours to reflect his personality. After the service, his wife thanked me for coming and she told me of one of the last things that Terry had mentioned. He talked about how ill he was, and as he was a religious guy, he talked about going to Heaven. He then told his wife, that in the nicest way, he hoped it wouldn't be too long before I joined him there so that we could continue our fun!!

That is when I truly understood the power of humour in a cancer environment.I do appreciate that it is not for everyone, and not for every occasion, and I am always very aware of people I don't know, in case it is not for them, but sometimes some serious things might just seem not quite so bad, with a little added humour.

I know that sometimes it is difficult to find a smile at times, even I struggle on certain days, but I have found that humour is what gets me through. It has been my defence for tricky situations and has always served me well.It is not rehearsed or learned, some of us have it, and some don't, but don't we look at life differently if we are laughing?

I have just found this piece on the web: Interesting!!

Research Supporting Laughter Therapy

A growing body of research supports the theory that laughter may have therapeutic value.
For years, the use of humor has been used in medicine. Surgeons used humor to distract patients from pain as early as the 13th century. Later, in the 20th century, came the scientific study of the effect of humor on physical wellness. Many credit this to Norman Cousins. After years of prolonged pain from a serious illness, Cousins claims to have cured himself with a self-invented regimen of laughter and vitamins. In his 1979 book Anatomy of an Illness, Cousins describes how watching comedic movies helped him recover.
Over the years, researchers have conducted studies to explore the impact of laughter on health. After evaluating participants before and after a humorous event (i.e., a comedy video), studies have revealed that episodes of laughter helped to reduce pain, decrease stress-related hormones and boost the immune system in participants.
Today more than ever before, people are turning to humor for therapy and healing. Medical journals have acknowledged that laughter therapy can help improve quality of life for patients with chronic illnesses. Many hospitals now offer laughter therapy programs as a complementary treatment to illness


Do you agree? Do you use humour in a similar way? What helps you cope? It would be great to hear from you.

Sometimes we hear, but don't listen.

We all lead busy lives, and it is impossible to fully dissect all the information that we get given, either by word of mouth or written. With the explosion of social media, smart phones and tablets, we are being bombarded by videos, tweets, Facebook messages, blog posts, advertising etc. It is getting, 'noisy' out there! We are now choosing to open our lives up further, as many people are on their phones, tablets,etc, as soon as they wake up till going to bed.

Almost in every venue now, it has become accepted that people are fiddling with their phones, checking emails or social media etc. Even our children are following in our footsteps, being glued to their phones wherever they go. Our brain is busy, with all the random stuff it is dealing with. How can we truly read and understand everything we look at, we can't! We don't have time or capacity. We become selective about what we do. We may choose to 'follow' people, but even then, we select what we want to read.

So, we have now scrambled our brain with technological stuff, what about face to face communication?  Ah, 'that's different,' I hear you say. In many ways it is, as you can see body language and eye contact, which lets us know how people are reacting to our conversation, but I wonder, if our brain, is starting to deal with conversation, as it deals with social media et al, by being selective?

We know that we all understand things differently, but my theory is that we all hear things differently. My wife and I joke about 'selective hearing,' but I really believe that this exists.When you put this into a serious situation context, you can start understanding the problems.The example I would like to use, is for those of us that have received a cancer diagnosis.

 

 

I don't know about you, but other than hearing the word cancer, I didn't really take a lot of the rest of the conversation in. Luckily, my wife was with me when I was given the news, and she digested the information much better than me.From then on, we discussed the conversation. She heard bits I didn't, and vice verse. Strangely, I never really took in the bad stuff. Was that because my brain chose to ignore it? I think it was. Maybe that was my coping strategy?

As my regular readers know, my disease, (Mantle Cell Lymphoma) is quite rare, and other than in my own clinic, I have never actually met anyone else who has it. This week I did, and we had a fabulous conversation. Neither of us could really believe it. Our stories were similar in many respects, but we both had a slightly different understanding of things. We had both been given information and we made what we could of it. We added more over time, and came up with our own answers.

Personally, I like to know as much as I can about my own health issues. I feel I can then make better decisions. But if I am not using all the information correctly, maybe I am not making the right ones. Other people prefer very little knowledge. Maybe in this instance ignorance is bliss!

Certainly, information, is available everywhere, which shows a vast improvement in the cancer sector, over recent years.However there is still an issue, about how we all understand it. If we are all selective in what we read, then we will have very different ideas about our disease and treatment.If we then have a discussion with the Consultant, and we are only listening to parts of what we are told, you can understand how we get confused and frightened.

 

 

 

I am an eager participant in all things 'social media' but I don't work. I probably have more time than most, to study it, but there are times when even I go blank, from reading tweets, blogs, etc. All interesting and relating to my hobbies, but it seems my brain is overloaded. There is a possibility that I miss important things in my quest to keep up. That seems to be the difficulty these days in all forms of communication, being able to prioritise what is really important!

Carol's legacy will live on

I consider myself very privileged to meet and communicate with the very wonderful people that I do.Everyone's case is special, and there are always moments that make me draw breath. It never ceases to amaze me, the number of inspirational people that are in this world.Every now and again, I see a story that stops me in my tracks, and this is one of those!

A fantastic example, of how Social Media, is helping the world join up, and enabling us to do things that would have seemed impossible, just a few years ago. I wanted to share Jeffrey's story with you all. A young guy, who understands the value of doing things while you can. Carol, his grandmother has terminal lung cancer. He wants to use his skills to preserve some memories for the future, and share his values with the world. Those of us affected by cancer will understand exactly what he is talking about.

This piece is longer than usual, but it deserves your time! I have viewed the video on countless occasions,(link at the bottom of the piece) and it never fails to move me. Here is Jeffrey's story in his own words.

"Hey everyone,

My name is Jeffrey Brant. I am a 25 year old, aspiring filmmaker from

Nashville, Tennessee. I’ve been focusing on freelance video the past

two years, and have been making great strides toward a career in film.

I started JBrantFilms, a freelance company of my own, to get my work

out to the public eye. Our support has been great since I started, but

now my producer and I are starting to focus on topics that we feel

deserve our attention. This is why I’m reaching out to you today.

On January 9th 2013, my grandmother was diagnosed with stage four-lung
cancer with doctors only giving her a few months to live. Now my
biggest regret in dealing with the death of family and friends in the
past, is not being able to understand WHY I didn’t do more to preserve
their memory. Why didn’t I take the time to ask the questions that
really mattered? And above all, with having a passion for a camera,
why didn’t I ever use this media to record moments and preserve
memories I had with my loved ones?

My father passed away going into my senior year of high school in
2005. My best friend and I found him on the front lawn, dead from what
they said was a massive heart attack. It took a couple of years to
finally understand why the tragedy had such a prolonged effect on me.
It was not until I came into my own as an independent person and an
independent thinker that I realized I had never truly known the man
who raised me. I never knew what made him tick. I never knew what his
deepest regrets or his childhood dreams were. I never got to know the
person who always picked me up from basketball practices and gave me
money whenever I needed it. I was too busy with routines that I firmly
believed were the most important things in my life at that time.
However, that was not true.

After watching one of those “heart felt story” kinds of movies at four
in the morning, days after her diagnosis, I was inspired to tell my
grandmother’s story in dealing with this cancer. A documentary I’ve
named, “Head Up..Heart Full,” is a story with hopes of teaching a
lesson about life and how precious it really is. I want to portray how
the most important gifts we have, especially each other, are often
taken for granted.

On February 6th 2013, I launched an online crowd funding platform
through a website called IndieGoGo.com. We set our goal of $20,000 to
help raise money for cost of equipment, pay for the travel and lodging
expenses for a small crew, including myself, as well as promotion and
distribution for the feature film when it is complete. We want to push
this message to as many film festivals as possible, worldwide. The
fundraiser is set to last 32 days, ending on March 10th 2013.

As stated above, the funding we raise will cover the costs of
traveling and lodging. This is because the story takes place on a
Native American reservation in Canada where I was born. I’m a
full-blooded Native American Ojibwa from the Mississaugas of the New
Credit First Nation reserve in Ontario, Canada. Through this firsthand
look at cancer, I also want to cover the culture of a society that not
many people know much about these days. We want the message of life to
be first and foremost, but we want to do it in a style that’s visually
compelling, true to the native theme, and most importantly relatable
to an audience of all races affected by this disease.

All I ask is that you take five minutes today to watch the video on
the link below. Click the "contribute" button and help donate to our
cause. Help spread the word and let’s make this film a reality. Every
little bit counts, I promise you that. Every little bit makes a
difference. This story isn’t just for my family, but for everyone who
has seen their lives and the lives of those close to them torn to the
ground by this awful disease. The message is not about death, but the
importance of life and all of its wonderful attributes that go
unnoticed. I still believe compassion in our society has a long ways
to go. This is just our contribution at making it believable once
more.

With all my best wishes,                 

Jeffrey Brant "

IndieGoGo Link:
http://www.indiegogo.com/projects/head-up-heart-full-documentary

www.JBrantFilms.com

Cancer and travel insurance, a toxic mix.

As if the complications of a cancer diagnosis weren't tough enough, it is very difficult to take even a very short break in sunnier climes, without a generally extremely complicated and expensive process of talking to prospective insurers.I used to almost hear the insurer rubbing his hands together when I mentioned cancer.The conversations would take ages. How long had I been ill, what treatment had I received, how long had I been in hospital etc? Once we had gone through the process, it would seem that they plucked a quote out of the sky, which I think they had got confused with the price of my holiday!

I was taking a week in Europe, not a year in war torn Africa.The price of some insurance quotes, was far more, than if I had hired a private jet to come home if I had felt unwell.Unfortunately, cancer patients are yet again, the innocent victims of discrimination. People who really need support, find themselves struggling for fairness, when they need it most.

Fiona Macrae, a very good friend of mine, and a breast cancer survivor, decided to try and improve things for cancer patients in the sector. Having been an insurance broker, and a patient, Fiona has a unique perspective on things, and started her own business Insurancewith to try and help people to overcome the problems that she herself encountered.

Below is a piece written by Fiona,with some helpful tips, when searching for travel insurance.My suggestion would be to speak to Fiona and her team first!

 

 

Cancer Travel Insurance

Travel insurance, for most people is a quick search of the internet, and then choosing from the many providers all willing to offer you cover at increasingly competitive prices.  However once you have been diagnosed with cancer, travel insurance that will cover you at an affordable premium is very elusive. 

Going through treatment for cancer is tough and many people think about and plan holidays during treatment, a sort of reward at the end, a complete break well away from the familiar hospital routine.  And I was no different,  I was diagnosed with breast cancer in 2005, and when my oncologist suggested I plan a holiday between finishing chemotherapy and before I had my surgery, I jumped at the chance, just a short break in the sun she suggested, recharge your batteries, it will give you something to focus on.  I did deserve a holiday, and my poor husband did too, not only was he looking after me for 6 months while I had chemotherapy, he was also the main carer of our then, 5 month only baby as well.  The thought of a break away from everything that reminded me I had cancer was  a tremendous boost, but what I wasn’t prepared for was the trouble I would have finding travel insurance to cover me for cancer when I was away.  The main problem was I hadn’t actually had the cancer surgically removed, I had only had the chemotherapy to shrink the tumour, and once I had got my strength back from the chemotherapy I would then have the tumour removed, but as the “cancer” was still inside me no one would cover me.  I later found out that because I hadn’t had my tumour removed did not mean I was a higher risk, but it as it was a relatively new way to treat breast cancer they didn’t know how to rate it.  

I had previously (before I had my baby), been an insurance broker, so I could not understand why I was refused cover, yes I accepted that my premium would be higher, but no cover at all, just ludicrous! This was the tipping point for me and why I decided to start Insurancewith, to offer people with cancer affordable travel insurance cover, and to also have the ability to screen people taking into account all the different thinking’s and breakthroughs  in cancer treatment.  Insurancewith was launched in March 2010 the rest, as they say is history.

 

 

Below are some of my tips and advice for obtaining travel insurance after a cancer diagnosis:

·         First and foremost always agree your travel plans with your treating Doctor, if you travel without your Doctors agreement you will invalidate your travel insurance policy

·         Travel insurance with cancer cover is available at affordable premiums, but use a specialist provider as they are able to rate the risk correctly and are generally cheaper than the standard travel insurance providers

·         Comparison sites will not be able to offer you a premium bespoke to your actual risk, so they will generally be more expensive

·         Choose your destination carefully; remember a remote island probably won’t have suitable medical facilities should you fall ill. 

·         The cost of health care in the USA and Canada can mean that the travel insurance premiums for those areas are expensive.

Check out an article that Fiona did recently for the Daily Express

I would like to thank Fiona and her team for their contribution to this blog. This is yet another  fantastic example of someone who's life was dramatically changed by cancer, and was able to help more people through her personal experience.It is a pleasure to know and work with you!