The joy of sharing experiences

It is logical of course, but how good does it feel when you are able to talk to someone who has experienced very similar issues to yourself? Sure, it doesn't change your own situation, but you certainly feel a lot more comfortable knowing that the person you are communicating with really 'gets' what you are talking about.

Our passions are raised, when we are talking about football, music, cars, women, men, politics or religion, with like minded people.We can really bare our souls to them, because we know that they really understand and share our emotions.I know when talking on some of the previously mentioned subjects, I can talk for ever, with passion, if I know that we are sharing common ground.

What about when we have been ill? Sharing experiences is somehow very therapeutic. I don't know why that is! It doesn't make anyone feel better physically. It doesn't change your prognosis, yet communicating with someone who has similar experiences to you makes you feel a bit better about things.I know it does, I have the proof! It certainly works for me, and I know from my blogging and personal work which I am involved with, it works for others.

The reason, I have concluded, is that people truly understand the issues, you face, as they share them. You don't have to waste time explaining things, as they understand immediately. They are not just being polite, and they also are truly grateful to be able to share their problems, with a 'brother in arms.'



So how does the 'cancer thing' work then? Most of us are lucky enough to have family and friends around for support when we need it.We are certainly very grateful for that. We have nurses, doctors etc for when we are unwell, and even counsellors if things get very tough.But unless they have similar experience, how can they understand.Put simply, it would be like me talking to a pregnant lady about the issues surrounding childbirth. I could certainly have sympathy with everything involved, but I couldn't pretend to understand what she was going through.

Since my illness I have spent a lot of time establishing the most effective means of communication, in the 'cancer world' When I started my quest, I firmly believed that there was no substitute for 'eye to eye' contact.But I realised that it was difficult to reach many people with that method. Then I started using social media, and the world became my oyster. Now people are communicating with each other around the world, sharing experiences and knowledge.

In the last few weeks I have been able to communicate with many wonderful people, all comfortable with sharing their unique experiences with me, and me with them.None of this would be possible with out social media being the 'conduit' that we needed.But the key to the 'comfortable' communication is our 'common bond' Patients are linking with doctors and support services, almost organically.

All this has made me think, about our large health institutions, particularly the N.H.S. They do what they do, really well on the whole, but I am trying to imagine if I went to them and said

 "I have a good idea. I think we should let everyone communicate with each other and start forming their own support groups. We can do this across the world, and anyone can join in!"

Can you imagine what the answer would be? It would certainly include Health and Safety, Risk Assessment, and confidentiality issues. If we were lucky we would just about have formed a focus group to look into it!

In all seriousness I really do understand all the issues involved in social media and health care, but from what I have experienced in the last few years, is that the patient has many more alternative areas of support now, and is creating some answers themselves.I also appreciate that it cannot replace personal contact, but is a fantastic way to share experiences, both near and far. If you are lucky enough, you will get to meet, in 'real life' to enhance your 'virtual' relationship.

I consider myself very privileged to be a part of a growing online cancer community. We know it's not perfect, but it is a whole lot better than it was. It means that we can communicate with people that really do understand!

Sibling donor stem cell transplant ( Suleika's story)

Todays post is an incredibly moving story from an inspirational young lady who is a writer in America. As you will know by now, I am the very grateful recipient of a life saving stem cell transplant.I have mentioned previously, about some of the emotions that people face, and this story, paints a very accurate picture regarding family relationships and more, when facing a life threatening illness.I would like to thank Suleika, for allowing me to share her story through this blog, and I know it will be of tremendous benefit for anyone facing similar issues.

There are a lot of things about having cancer in your 20s that feel absurd. One of those instances was when I found myself calling my brother Adam on Skype while he was studying abroad in Argentina to tell him that I had just been diagnosed with leukaemia and that — no pressure — he was my only hope for a cure.


Today, my brother and I share almost identical DNA, the result of a successful bone marrow transplant I had last April using his healthy stem cells. But Adam and I couldn’t be more different. Like a lot of siblings, we got along swimmingly at one moment and were in each other’s hair the next. My younger brother by two years, he said I was a bossy older sister. I, of course, thought I knew best for my little brother and wanted him to see the world how I did. My brother is quieter, more reflective. I’m a chronic social butterfly who is probably a bit too impulsive and self-serious. I dreamed of dancing in the New York City Ballet, and he imagined himself playing in the N.B.A. While the sounds of the rapper Mos Def blared from Adam’s room growing up, I practised for concerto competitions. Friends joked that one of us had to be adopted. We even look different, some people say. But really, we’re just siblings like any others.


When I was diagnosed with cancer at age 22, I learned just how much cancer affects families when it affects individuals. My doctors informed me that I had a high-risk form of leukaemia and that a bone marrow transplant was my only shot at a cure. ‘Did I have any siblings?’ the doctors asked immediately. That would be my best chance to find a bone marrow match. Suddenly, everyone in our family was leaning on the little brother. He was in his last semester of college, and while his friends were applying to jobs and partying the final weeks of the school year away, he was soon shuttling from upstate New York to New York City for appointments with the transplant doctors.


I’d heard of organ transplants before, but what was a bone marrow transplant? The extent of my knowledge about bone marrow came from French cuisine: the fancy dish occasionally served with a side of toasted baguette.
Jokes aside, I learned that cancer patients become quick studies in the human body and how cancer treatment works. The thought of going through a bone marrow transplant, which in my case called for a life-threatening dose of chemotherapy followed by a total replacement of my body’s bone marrow, was scary enough. But then I learned that finding a donor can be the scariest part of all.


It turns out that not all transplants are created equal. Without a match, the path to a cure becomes much less certain, in many cases even impossible. This is particularly true for minorities and people from mixed ethnic backgrounds, groups that are severely underrepresented in bone marrow registries. As a first generation American, the child of a Swiss mother and Tunisian father, I suddenly found myself in a scary place. My doctors worried that a global, harried search for a bone marrow match would delay critical treatment for my fast-moving leukaemia.

That meant that my younger brother was my best hope — but my doctors were careful to measure hope with reality. Siblings are the best chance for a match, but a match only happens about 25 percent of the time.
To our relief, results showed that my brother was a perfect match: a 10-out-of-10 on the donor scale. It was only then that it struck me how lucky I had been. Doctors never said it this way, but without a match, my chances of living through the next year were low. I have met many people since who, after dozens of efforts to encourage potential bone marrow donors to sign up, still have not found a match. Adding your name to the bone marrow registry is quick, easy and painless — you can sign up at marrow.org — and it just takes a swab of a Q-tip to get your DNA. For cancer patients around the world, it could mean a cure.


The bone marrow transplant procedure itself can be dangerous, but it is swift, which makes it feel strangely anti-climactic. On “Day Zero,” my brother’s stem cells dripped into my veins from a hanging I.V. bag, and it was all over in minutes. Doctors tell me that the hardest part of the transplant is recovering from it. I’ve found that to be true, and I’ve also recognised that the same is true for Adam. As I slowly grow stronger, my little brother has assumed a caretaker role in my life. I carry his blood cells — the ones keeping me alive — and he is carrying the responsibility, and often fear and anxiety, of the loving onlooker. He tells me I’m still a bossy older sister. But our relationship is now changed forever. I have to look to him for support and guidance more than I ever have. He’ll always be my little brother, but he’s growing up fast.

For more information regarding stem cell transplants etc in the UK/Europe please contact Anthony Nolan


Suleika Jaouad (pronounced su-LAKE-uh ja-WAD) is a 24-year-old writer who lives in New York City. Her column, “Life, Interrupted,” chronicling her experiences as a young adult with cancer, appears regularly on Well. Follow @suleikajaouad on Twitter.
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A new year, but how do we plan now?

As most of my friends will tell you I am not really into massive celebrations, unless it is football related! So if I am honest, much as I enjoy the family and friend time of Christmas and the New Year, it never really feels like a time of celebration. I always have the same hope each year, which is that the coming year is an improvement on the previous ones. Of course, it never works like that, and in recent times, I have had some massive highs, followed by some very bad lows, never really quite sure what will happen next!

So I am really going to tempt fate now! I am starting to feel positive, and this is usually where things start to go wrong, but I have seen it before, so know what to expect.The only thing I normally plan for the future is my football season ticket, and I only buy one season at a time! But it feels different now.There are some really interesting projects for me to do, with things appearing for later in the year. How do I approach this then?

Going on past experience, my health gets unreliable each year, just when I think things are going well. But I have actually agreed to take on some fixed commitments for this year. They are interesting opportunities, that come round rarely in life, so I decided to 'go for it' and although there is a lot of preparation to be done, I have my fingers crossed that I am well enough, to do them.

This made me think about how different my life planning, is since my diagnosis, but I have also noticed massive changes in our society,that seem to be affecting everyone with their planning too. I now live my life very much day to day, as I have found it very demoralising, making future plans and being unwell, and therefore unable to achieve them. Psychologically, I get a feeling of failure.

But there are many things that have happened in the world, that have meant it is now difficult for most of us to make many long term plans. Things like, the economy, pensions and investments, the job market, to name but a few. It seems that we all feel a lot more insecure than we did. So although we will know the direction that we want our life to go, we will never be sure of the exact route, as things happen, to cause us to change direction.

Gone are the days when we got a job, worked for one or two companies through our lifetime and retired with a lovely pension.Most people will change jobs frequently, and are unable to save adequately for their retirement. More people are renting, as they are unable to afford their own house, so are unable to feel the element of security that a lot of my generation are benefiting from.

My friends and I, and others of this age group, are feeling the 'economic winds of change' and it makes us feel uncomfortable. However, I have spoken to many young people, my sons included, that have now become accustomed to this way of life, but they seem to have the 'worry about it tomorrow' attitude. They know, that unless they have a remarkable slice of luck in their life, they will never own large houses, and retire, financially comfortable.

If I look on my household calendar, it is completed with various social functions throughout the year, my wife completes our social diary, with military precision. However if I ask my boys what they are doing at the weekend, they never know until Friday night! That said, they are very relaxed about things, and in many ways I am quite envious of that attitude. I don't think I ever had that, even when I was younger.

In summary, it seems that although my life planning ability has changed, everyone else's has  too, for different reasons, and we are now slowly having to adapt to short term planning. It is very difficult to change the habits of a lifetime, so many people are struggling to come to terms with what is happening.

I have found it extremely difficult to adapt, and if I am honest, still struggle with it, but the positive is that I am never sure what tomorrow will bring, good or bad, so life is never predictable! I know that I would be thinking differently if I was in the work place, but I guess I am very much 'old school.'

Have you always had long term plans, or are you used to just turning up and letting it happen? Are you now having to adjust the way you think about things? Has an unexpected 'health issue' turned your life upside down? What does the New Year have in store for you? I look forward to hearing from you.

My own thoughts on the 'power' of cancer.

Today, felt very much like a 'writing day.' I am home alone, and it is freezing outside, so just having my computer for company, is normally a recipe for things to flow! However, the phone rang, a pal popped round, and a couple of articles landed in my inbox, so my focus was diverted.But as usual, after reading and chatting for the last few days, my subject matter for this post duly arrived.

I am certainly aware of the effects caused by cancer, to my own life and the thousands of other people I have had the great pleasure to have come into contact with, but I then started to look at the bigger picture.My first thoughts were towards our main treatments of cancer, which are surgery, chemotherapy, and radiotherapy.

In my lifetime, I have seen some amazing things, including man walking on the moon, mobile phones, and the Internet. Fantastic advances in technology. This made me look at how we dealt with cancer in the past. It seems that the first recorded cancer surgery, was in 1846.Radiotherapy has been used for in excess of 100 years, and chemotherapy, has been used since the 1940s. Of course, all of those methods have improved, and are much more 'targeted' than they were, but considering how long we have been trying to treat cancer this way, the outcomes are still very much unsure

We now have very powerful scanners, that can tell us a lot more about the cancer. There is robotic surgery, and fantastically accurate radiotherapy that we can even use on brain tumours. Now we can also use genome data to help target treatment more accurately, but still cancer continues to wreak havoc in our society.Maybe it is our 'awareness raising' that is working effectively, but rarely a day goes by without a major news article regarding cancer.It still feels very much like a modern day plague.

The battle with cancer, has succeeded where politics and religion fail, and that is to unify people around the world, to work together to find a cure. Investment in drugs and research is happening in every country,people all trying to unpick the lock. Millions of pounds and man hours all trying to find a cure. As each year goes by, another ground breaking discovery happens, but it still feels like we are an age away from the cure we all seek.Is cancer getting cleverer? When we find new drugs, does it eventually find it's own immunity to them?

I have mentioned briefly above, the power of the disease, but I would also like to mention the power that it also seems to give people.In my numerous voluntary roles, I meet and talk to so many people who's lives have been touched by cancer and want to do something positive. From fund raising, to raising awareness, people stretch themselves beyond the call of duty. They seem to find strength, talents and endurance, which they never realised they had.Climbing mountains, making films, writing books.These are just a few of the things that people are prompted to do, when touched by cancer.

It seems to encourage many people to step outside their normal comfort zone. So many people that I know, have had their entire life changed, including a change of career, and are devoting a majority of their time to cancer related projects. We have 1000s of cancer charities around the world, staffed with volunteers, helping people affected by cancer in many diverse ways, both directly and indirectly.

Young, old, black or white, we are all united in a fight against cancer. Millions of people and millions of pounds, working to improve things around the world. I am struggling to think of anything else that has so much common resource fighting it. This demonstrates, the power that this beast has. There are many important issues in the world, but they are generally localised, maybe to one or two countries or regions. Very few that cross the globe like cancer.

How does cancer have that power? For some it gives strength, for others, fear. It makes strong people weak, but also weak people strong. Is it us that gives it the power, in our minds? Is it the fear of the unknown? There is an element of fear in even saying the word.It can't even be persuaded by money, that is how powerful it is!

It is the first time for a long time that I have really sat and thought about some of the complexities of my disease. I didn't sign up voluntarily, I was conscripted, but now I am a member, I am going to do my best to bring about a change in power!!

Young people and cancer. (Sam's Story)

As I have mentioned in a previous post, I have become very aware of the growing needs for support, on behalf of young people dealing with a cancer diagnosis.I also know from the feedback that I am receiving, that this blog is getting an increasing younger audience now, which is fantastic.

Of course, social media is just one part of the story, but it's importance is growing rapidly. It enables like minded people to be able to communicate, share experiences, and support each other. It is also helping organisations stay in touch, with the people that need them. My experience with this blog has shown how sharing experiences has helped many readers deal with some of their own issues. In fact what we have all found is that writing things down for others to read can be very satisfying.

Sam was directed to this blog via Twitter and we have been communicating since. We both agree that we would like to encourage more young people to share their stories, so Sam decided to write this inspiring post

"Living with lymphoma isn't the funnest experience I've had in my 19 years of living. I would say that my lucky experiences with travelling were my favourite and most enjoyable. I've been to Disney world, Disneyland, Rome, the Caribbean, Portugal, Paris, Pisa. I've been fortunate enough (or spoilt) to go to see some amazing sights. The Colosseum in Rome, sea turtles in Barbados, Woody and Buzz in Disney world, the list goes on. Being fortunate enough to see so much of the world from a young age, gave me a bit of a travel bug. After going on a cruise in the Caribbean and always loving the ocean, I decided the Royal Navy was my latest "what I want to be when I grow up".

Moving a few years on, I went to college having forgotten my Naval dreams, & I studied sports in the hope it would get me into Camp America, and I could go and make some friends from all over and see some beautiful sights in the US. By the time I'd finished, I had plans to go to university to study psychology of sport (never knew what I was thinking at all!). So I did my year at university and I hated it, and early on in 2012 my desire to join the Royal Navy seemed more realistic, and a lot of fun. In the summer I spoke to a Royal Navy officer and got my application pack, and looked for a job in the mean time. I'd had a cold for a while so it was taking me a while to get the ball rolling.

Then I found my lump and my tests began and by mid August I started to get worried I had something that was on the medical bars list for the Navy and I lost it, throwing things around my room and crying - I thought my dreams had been shattered. So when I was actually diagnosed with Hodgkin's lymphoma on the 22nd of August, went into a weird mode in my brain. It didn't really twig I had cancer,except for the times I thought about the Royal Navy, and how cancer was on the medical bars list, (unless you're considered cured for a certain amount of time you can't join).

Since my treatment, and knowing that I'm one of the lucky cancer patients that has a time scale on their chemo, and hopefully remission at the end of that, I've again been "fortunate" enough to plan my time after February. Yes I will have check ups and tests and such, but I'll have my life back. I'll be free to go out in public more, and party and travel! And that is exactly what I plan on doing. Me and my girlfriend are planning a weekend away to Disney Land Paris, I keep getting majorly excited because I love Disney land and she's never been so it'll be great to take her.

This post all comes down to one thing. Despite the fact I am ill and I have cancer,and I'm only 19 and I've never really had a job, and don't have one for at the end of my treatment - I am lucky! I am so lucky you wouldn't believe. In our youth cancer community, I talk to so many people who have it worse off than me. Don't get me wrong it's NOT a breeze, it's incredibly hard but I find some sort of self comfort in the fact that it's not as bad for me as it is for some of my fellow sufferers.

I have hope, love, I don't have to pay for my treatment and I'm well supported by charities and the government. I've spoke to terminally ill people, people who have to pay for their medical treatment, people who can't work and can't claim for money and don't have the support they need financially or emotionally in some cases. And it's an incredibly sad state of affairs.

But if a good thing comes from any of our cancer experiences it's an increased sense of compassion we behold. I know that even though I'm lucky enough to go travelling and have my life at the end of this, I'm going to do everything I can to raise money for Macmillan Cancer Support, Clic Sargent, Teenage Cancer Trust, Lymphoma Association, Cancer Research UK and maybe even smaller charities such and Reubens Retreat & Richards Wish.

It's the least I can do after the help and support I have had from them.Worthwhile causes that mean a lot to me and my family, will benefit from the fact I had a crap 6 months that they helped me through. Everyone's a winner (sort of)."


I would like to thank Sam for sharing her story and you can follow her progress through her own blog .If you would like to share your experience, please feel free to contact me by leaving a comment below or through Twitter @christheeagle1

How did I become a patient patient?

I have to admit that patience, was never a quality that I had in abundance. I have always been very impatient, and I guess that it is one of the characteristics that drove me on in my life, certainly in my career. Never waiting for things to just happen. Always looking to make the most of any opportunities that came my way.Trying to take control of my life and steer it in the direction that I wanted it to go.

Then I got my news! To me, not being well, was having a cold, or at the worst flu. Even then I would still go to work. As far as I was concerned, I had a plan, and a bit of illness wasn't going to upset it." How long will I be off work?" was my first question when given the news I was dying! Nothing had ever stopped me going to work, and I couldn't comprehend it at all. " You will be very sick for at least 6 months and it will take you at least 6 months to recover" was the answer.

Huh, they always tell you the worst scenario. I will be back to work within 6 months I thought privately.Well that 6 months turned into a year and a year turned into 5 years plus. During this time I have had to rely on a lot of other people to do things for me, to enable me to live something approaching a reasonable quality of life. My standard riposte of "don't worry I will do it on my own" got me nowhere, as I couldn't!

It took me a long time to realise that my impatience, was hindering my well being. I started to set deadlines for my recovery, and miserably failed to meet any of them. That made me upset with myself, and I became frustrated, thus making me feel worse.I finally realised that my life was no longer in my hands, and actually I couldn't really control much anymore. So many things were out of my control. I decided to 'freefall' meaning, 'what would be, would be.'

Even when volunteering, I have maintained my impatience, and always viewed things as if I was working. Constantly trying to be the best, and pushing to achieve more.But things are also very different to the cut and thrust of my old working life, in this sector. Everything feels more relaxed, and flexible. Timings are different, and priorities are constantly changing, so I have had to adjust here as well.

The intentions are good, but I am now used to things invariably taking longer than anticipated, or sometimes not actually happening at all. My experience in the sector, has made me a lot calmer. If things happen, all well and good, but if they don't, I am not surprised! I get used to being asked if I can do certain projects and then never hearing anything more about it.

Going for a hospital appointment is another area where my patience has been tested fully! I very soon realised, that the time of your appointment is rarely related to the time that you will actually be seen by the Consultant. There are of course many reason's for this, most, very valid, but it doesn't help your own plans. No matter how excited I get, it just isn't going to change anything and the doctors are always doing their best.Trips to the pharmacy, and blood testing, are similar situations. Everyone doing their best but the whole process takes a lot longer than anticipated.

My final impatience, was for some time in the sun. The years go past, and I always promise my wife, that it will be this year that I will be well enough to take a holiday. Well we have only managed one week away in 5 years, so again my impatience has turned to patience.

Getting better, going back to work, taking a holiday and living a normal life, were all things I was impatient to achieve. They are all still objectives but if they are meant to be, they will happen. If not, so be it! I am no longer angry when told that timings have changed, in fact, more surprised if they don't. I am trying to turn my angry energy into something positive.No longer am I eaten away by lack of achievement in whichever area of my life I look.

My biggest achievement in this period is staying alive, and I am happy with that!

Do you get frustrated with your illness, or any other aspect of your life? How do you deal with things? I would love to hear from you.

Stem cells and Santa!

Yes, it's that time of the year again! The season of goodwill to all men. Parties, presents, drinking,eating, and enjoying ourselves. That's what it's all about isn't it? For most people it is. They might also remember that it is a religious holiday too. But unfortunately, cancer doesn't take any time off, and continues it's relentless progress, celebration time or not.

I am experiencing at first hand, the pressure that patients can feel over the festive season. The difficulty of doctors and staff being away. Ensuring that you have enough medication to see you through the period.Worrying about what will happen if you do get sick, over this period. The hospital with far less staff than normal, if you do.

However, this time is a particularly poignant time for me. Five years ago, I was in my isolation unit, undergoing a stem cell transplant. The staff were unsure about starting it before Christmas, but I was in such poor condition that in the end there was no choice.My immune system was slowly poisoned over 10 days until it was like that of a new born child, then I was given my life saving transplant. A little bag of stem cells from my anonymous donor was sent across London on a motorbike.All organised by the Anthony Nolan Charity.

The gift of life for Christmas, how meaningful is that?? My goodness, how lucky am I? In honesty I am feeling quite emotional whilst writing this piece.Even with this transplant, no one was sure what extra life I would be given, if any. There was no guarantee that I would even survive the transplant.Yet here I am, 5 years later writing this.

I would like to share some of the more surreal moments of my festive season in 2007. Firstly, even though I was under heavy sedation, the Sister, (who was a very attractive young lady,) asked me what I wanted for Christmas. my quick reply was her, in a tiny Santa outfit! ( sorry ladies!) She played along and came in on Christmas day with her outfit on!

Secondly, at just past midnight on Christmas eve, all the patients got a little present from the hospital. What a lovely thought! Finally, on Christmas day, my family and friends all came in to visit me. It certainly was a unique way of celebrating.
So now, I am like the Queen and have two birthdays, my official one and my new life one. So although my bodywork is 56, my system is only 5.

Christmas is a family time, and although we all lead such busy lives, it is an opportunity, for people to spend some quality time with each other. For me, it is a period of reflection. I have so much to be thankful for, and I can celebrate that, amongst loved ones and friends.Since my illness I have had two grandchildren, and my boys are progressing in their lives. My spare time is taken up by doing lots of exciting things I never imagined I would be doing.

It has taken me a long time to realise, but we are not really in charge of our lives at all! Things happen frequently that change our lives but are totally out of our control.My choices are very restricted, but as I have mentioned in a previous post, things just happen! I could never have imagined seeing 5 Christmas's after being diagnosed with a stage 4 incurable Lymphoma.

So, as the festive time is upon us, and I watch people celebrating, who knows what is really going on in their lives. Is it just an opportunity to escape from some of our everyday issues? Who cares, they're enjoying themselves. In recent years, there have been more serious moments, and less lighter ones.I am leaving my baggage outside this Christmas, and will pick it up again, in the New Year. It won't forget who owns it, and I don't think anyone else will want it, so I know it will be still there, but a few days with family and friends will make it feel lighter, when we are reacquainted.

But the good work, continues. Some of my nurses and doctors are working over the holiday, and will be there if required, and my thanks goes out to them and their families for the sacrifices that they continue to make on our behalf. Also my thoughts are always with my fellow patients who are going through treatment with me.

I hope that the Christmas period treats you well, and maybe you would like to share some of your seasonal experiences? Feel free to leave a comment, as The Community is open 24/7 365!

A full time job, without benefits!

 I seem to spend my time running from one hospital appointment to another, either for treatment or a review.If I add blood tests and pharmacy visits to the mix, I spend a good percentage of my life tied up in my health issues. My diary is a necessity, to check what time I have left, to fit in any other tasks that I may wish to do. That discipline continues, for my medication. My wife organises my daily tablet regime, which must be done at certain intervals, some with food, and some without.

This programme has continued to varying degrees, for the last five and a half years. Sometimes more full on, and others less so.I am now treated in two hospitals, so things have got a little more complicated, and travelling up to London twice a fortnight, requires a bit more planning than normal, and of course, more time.More often than not, appointments over run so you can end up waiting around, or rushing about.

I never have an appointment card, for two reasons. Firstly it would be the size of a 'Yellow Pages,' and secondly, my priority is always my appointments, which, although I have a poor memory generally,I cannot forget them! My view is that if my Consultant considers it important for me to come to hospital, then I must. After all, it is in my own best interests.

Whilst in hospital last week, some other patients were discussing how difficult things were, when trying to cope with their treatment schedule. As well as routine issues, there were things like special dietary requirements, also unscheduled visits for  radio or chemotherapy. Everything is difficult to cope with, if you remain fit, but if you get sick, then all the planning goes out the window and things have to be rescheduled.

My working background was management, so I haven't struggled too much with my treatment plan, but I can certainly understand when people do.It can be a very punishing schedule, for someone who's system is already compromised, at the start of the process! It really can be exhausting. Even sitting around waiting for tests, can be very tiring. You keep checking your appointment time, once the time has come and gone. Checking your number again and again, if you are in a queue for blood testing or collecting drugs. Everything seems to get slower as your time comes. 'How long have I been waiting here?' Plays over and over in your mind.

Of course, I have only mentioned the patient, in this process. There are carers that have to totally rearrange their lives to cope with the needs of their loved ones.In many respects being sick is like taking on an additional job. So many more responsibilities and meetings! Not too many fringe benefits though.

Naturally, if your health is not right, nothing else is important, but I have found that it is necessary to have distractions. That is why I get involved in all the projects etc that I do.Not only, is it a way of maintaining my business skills and maybe learning new ones, but they take my mind away from my own health issues, and give me a good balance.
Yes, I find it very difficult at times, to find the energy and enthusiasm, to get involved in things when I am in the middle of a treatment cycle, but I have always felt an overwhelming feeling of satisfaction once I have.

For me personally, my disease and consequential treatment, has meant that I am unable to work, but I do know many people that are attempting to hold down a job or studies, whilst having treatment etc. I am also aware of the issues that they are having, and I often wonder if the fact that they are still having to try and work, is possibly hampering their health.I fully appreciate the financial implications involved, but I am very aware of the stress that this puts on their recovery.

In summary, I feel that many people, including patients, employers and health professionals underestimate the extra stress that illness can bring. Very quickly, there is a lot of additional pressure added to very busy lives. I guess we just have to find our own ways of dealing with it, as I know from personal experience, I know best!

How do you deal with illness? Do you underestimate the added burden on your life?

Making life changes can be tough, but beneficial!

Like most of us, when I was younger, I was encouraged to make a 'life route map.' This was a path that I was to follow, which would take me into a career, find me a wife, produce 2.4 children, buy me a house, and ease me into my retirement, where my golden pension would help me live happily ever after.

Well, either my planning was no good, or I was useless at map reading! I am currently 56, haven't worked for nearly 6 years, and am definitely not looking at a golden pension. My path started off quite well, and I fell into a career, but that is where it all started to go wrong. It wasn't the right one! It then felt like I had totally lost my way, no map, no compass and no road either.

But things started to happen for me and opportunities arose. It felt very strange. I was used to living the 'safe' life, and driving in the middle lane, but I was then forced to step outside my comfort zone, and start making decisions.'What if' started to creep into my thinking, and self doubt started dominating.

The stage had been reached where I could no longer sit on the fence, and choices had to be made.I changed career, and my life took off. I felt totally empowered, and started to enjoy, making big decisions. The bigger the better, bring it on! I thrived in a volatile business environment, with my newly found confidence, and things got better and better. Yes, I was taking some calculated risks, but I always had a plan B.

We all know that things can't last, and sure enough,nature intervened. This was another instance where my life had taken a direction, that most definitely was not in my plan." Mr Lewis, you are dying" didn't appear in my script anywhere, certainly not at the age of 50. It seemed like I had been relieved of decision making duties temporarily, and nature was going to take over.I was looking forward to a break, but not quite in that way!

Nature picked me up and bounced me around a bit, and left me blindfolded in a place I couldn't recognise. Where do I go from here? My health was poor, my confidence had gone, what did I have to offer? The decision making power had been taken away by nature, and I could barely choose what I wanted for lunch!

The one thing I could decide was that I needed help. That proved to be another life changing decision, although it didn't feel like it at the time! I was volunteering in Macmillan h/o doing data entry.Me, a 'captain of industry' only capable of basic office work! Can you imagine how that felt??

One thing led to another and with small steps, so many wonderful things have happened to me, leading to creating this blog. So many exciting things, that wouldn't have happened in my previous life.My confidence is returning, and with it, come the opportunities, thus the choice process, is required.

Now it feels entirely different.I am unable to work, so am not looking for a career. Just a way to use my time most effectively, and doing something I enjoy.I have no personal fear after this experience, which gives me the freedom to try new things. What is the worst that can happen if things don't work out? Exactly!

I really do appreciate, that living life in the way that I have, is not everyone's ideal. After all, that is what makes life so interesting.However I can say that since my illness, I was forced to adapt things in my life, that wouldn't necessarily have been my choice, and some exciting things came around because of it. Not all change is bad, and we evolve because of it. Sometimes it is by our choice and sometimes it isn't

Although I am at this point because of nature, I really have a feeling of 'freedom' about certain aspects in my life. Sometimes it can feel right to 'take a chance!'

The above post is a major milestone for me, it is in fact my 100th, since I started writing, back in February. I would like to take this opportunity of thanking all  my readers for your continued support. Thank you for sharing your thoughts and emotions, and also for sharing this blog with others.

This has helped us become an internationally known resource for people affected by cancer. Please continue to spread the word, as there are still plenty of people out there who don't know about us. Also feel free to join this blog, which can be done easily via Twitter. Your logo will appear, and you will get automatic updates.

My blessing is also my curse!

My working life before cancer, was almost perfect. Apart from doing too many hours, it had everything that I wanted. Good pay, benefits, travel, contact with many different people around the world, and it involved buying and selling, which were things that I realised I was good at. The main thing for me was variety. You never knew from day to day what would be happening and who you would be talking to. Busy, quiet, good or bad, every day was different.

Then came cancer, to put a spoke in my working wheel! Regular treatment and appointments followed by resting at home. To top it off I spent months in isolation trying to recover from various complications. Not only did I feel very sick, I felt fed up with the routine of things. Physically, my body was coping but mentally it was tough. Being woken at the same time every day, meals, drugs and treatment, all part of a regimented routine.It was fine for my body, but I felt I was going crazy.

They say to be careful what you wish for, and the idea of some time away from work did have a certain appeal, but not for long.My mind started playing tricks on me, and I really believed that I could return to work, quickly, and be the person I was. No way! The reality is, I now struggle to cut the front and back lawn in the same day.Although my brain tells me that I can run the world, my body struggles at a keyboard.

But the good news! Despite the recent years of pain and boredom, I have been able to get involved doing lot's of different things associated with my illness. I work with several charities, and have numerous small projects going on.I also now spend a lot of time writing. Either for my own blog or other articles, when I get asked.

In a different way, the variety of my working life has returned.From not being known by anyone in the cancer sector, I am now contacted by a wide variety of people, from all walks of life. If I'm lucky I get to talk to some famous people, but also some very senior members of the medical profession, writers from around the world, and people like me affected by cancer.I never know what the next email or phone call will bring.

Currently, I am excited by things that are happening in my working life, as the phone and emails get busier.So many lovely people, are beginning to find me, from all around the world, and I have some exciting things happening in 2013. Many of which, I would never have imagined. In the last few years I have experienced so many positive things, and still continue to.

Which prompted me to think about, how the curse of cancer struck me, took away a lot of my hopes and dreams, and some of those of my family. My future is just day to day, but I now have back, that variety, for which I craved. Yes, I have worked like crazy for some of those things to happen, but they have. I can deal much better with my health issues if my mind is busy, and I am fully occupied.

The feedback I receive, fuels my desire to do more, until my body lets me know to take a break.I have been shown talents I never knew I had, and am able to help enrich the lives of others in a small way.I am mentally re energised. The ironic thing is that none of this would have happened if I had not got sick.All the people that are now a major part of my life, I would never even have met!

The people are very much my blessing, but the curse never feels far away.