Friday, 22 February 2013

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!

Monday, 18 February 2013

Young adult cancer. Ann-Marie's story (Isolation)

Following my previous post about loneliness, which has had some incredible feedback, I just had to publish this account of a very brave young lady, Ann-Marie, who from the age of 4 has battled Ollier Disease and then at the age of 25 was diagnosed with bone cancer. Ann-Marie bravely wants to share her story through this blog, to raise awareness of how isolated people can feel, at the time they need support the most!
Some of our younger readers may recognise the roller coaster of emotions. This also emphasises that these emotions can effect you, at whatever age you are
This post is slightly longer than usual, but an incredibly powerful message!

"I fought the fight; I'm out the other side but what now?"

 So, it was a little while ago now but I made it through the last major and by far the hardest and most upsetting milestones on my bumpy ol' journey. F**k that was hard! It was very emotional; I knew the anniversary week of my surgeries/complications was going to be the hardest. That week in the previous December was so frightening and confusing, the plus side of being so ill at the time was that it was too hard to comprehend what was actually happening to me and I launched myself fully into fight mode.

I can spend the rest of my life asking 'why?’ but now I need to start trying to ask 'how?’

How do I move forward? How do I try and leave it all in the past and view it as a blip that happened in my life? How do I reclaim the parts of me that I lost along the way, and regain the big enthusiasm for life that I used to hold? And how do I overcome these feelings that have been suffocating me for so long?

 Self reflection is a right b**ch hey?! I know this all sounds very downbeat and probably not what you'd expect from gobby old me but I vowed to be totally open and honest about every part of this time of my life, even if the chapter I am about to explain was sugar coated for a while by myself, but there are lots of reasons behind that and my main aim in speaking out about my experience is to spread awareness of the psychological effects that can occur.

I spent quite a bit of time battling with these demons behind closed doors and only letting a few selected people in on my thoughts, although never quite fully, thinking that I must be going crazy but also feeling that I'd be perceived as somewhat ungrateful of my blessings, whilst so many people are out there suffering and would give anything to be in my position. ‘C'mon, man up’ I told myself; it's not the end of the world right? And no, I knew it wasn’t. I knew that things didn't always go to plan, I knew how loved and cared for I am – surrounded by so many family and friends willing me on, expressing kind words of encouragement and offering support left, right and centre, even people that I’d never met! And I knew how far I've progressed in this length of time but when you are caught up in a cloud of despair it's very hard to see what's on the outside.

The emotional effect that it's all had on me has been so isolating. Along with the fact that, due to my situation, it’s highly unlikely that I’ll ever get the longed after ‘all clear’ the fear of the unknown was at an all time high. It's incredibly hard to admit that something is not right when your mood, thoughts and actions become totally alien to you and at the same time completely out of your control.

 It was told that I was suffering from Post Traumatic Stress Disorder (PTSD) in December '11 whilst still in hospital, it's not unusual in my situation, a near death experience is not something I would recommend! I was displaying symptoms of this anxiety disorder and battled with very distressing thoughts on a daily basis but, as I mentioned before, I was still in fight mode so had getting back on my feet as my main priority. The thoughts did not go away and began to take over my everyday life, with every setback I experienced, the feelings would grow stronger and I had a massive year of forward rolls and set backs indeed. To be quite frank, looking back and knowing more about it, I can now see that I was completely engulfed by it.


So… ‘Ello, been a while innit?!
I haven’t posted in a while but not much had happened really, everything seemed to have slowed down in terms of any new health developments and I’ve been out n’ about in my wheelchair, happily getting used to my new freedom and generally smiling a bit more. See, look there’s me in me chair down the market smiling.
There is also a new addition to the Mullarkey family, I have a beautiful new baby nephew to coo over. He is gorgeous!!!!
Then last Friday I got a call out of the blue that an appointment had been made for me to meet with an Oncologist on the following Tuesday (6th). Hmmm, “Oncologist WTF?!!!!!” was my initial thought followed by “oh s#!t oh s#!t oh s#!t”. 
I hadn’t received the results of my lung scan that I had on the 14th of Feb and with my previous one I’d been able to discuss them over the phone. I had called my Macmillan nurse earlier that week and left a message but got no reply so as soon as I got the call for this appointment the alarm bells started to ring.
In my panic I called my sister who advised me to call my Macmillan nurse again. So I did and she told me that there were some new findings that needed to be discussed with an Oncologist so we could discuss treatments and so on. 
There were lots of tears that day, I had to ask my sister to tell my Dad as he had been calling me daily to know if the results were ready yet and as I was sobbing too much I didn’t want him to freak out. Seems like this is getting to be a regular arrangement now of my sister having to deliver the bad news to people cos I get all blubby with tears and snot flowing down my face. Sorry Una, I always seem to land you with the horrid bit. To be fair though, I think you get the cleaner task as Kiyral is the one that gets covered in my tears and snot, although I’m not sure he has clocked up as many times that my snotty red face been pressed against his chest as you have over the years yet. Anyway… yeah enough of the snot talk!
So, I let all the tears out and then started to get myself dressed up as Cyndi Lauper for Tristan and Lorraine’s 1982 Birthday party. No chance I was missing out on a party! As it turns out, my Dad hadn’t heard my sister properly as he works on a building site so he called me half way through me applying me slap so I had to tell him again but managed to hold the tears in as I didn’t want my make up to run… ah priorities!
Bloody hell, I do ramble on don’t I?! My sister reckons I’d be a nightmare at a support group cos I wouldn’t let anyone else talk… haha, it’s true. Maybe that’s why blogging is turning out to be a good option cos no-one can interrupt me! Please bear in mind, it is very late and I’ve had all of my medication for the day! At least Kiyral is getting a bit of peace whilst I type away.
Anyway I had a wicked time at the party, got on the rum, saw loads of my friends and tried to forget about the whole thing.
So, Tuesday came and I hadn’t slept all night. Just layed wide awake thinking about things and wondering if I had the strength to actually start fighting again and facing treatments. 
After a long car journey of forcing my sister, dad and boyfriend to listen to my overtired ramblings we got there. 
I was really nervous about meeting the Oncologist as I’d googled her and saw that she specialises ‘exclusively’ in chemo and radiotherapy for the treatment of sarcomas. Una has told me off for googling cos I always freak myself out… like when out of curiosity I insisted on watching that youtube video of a knee replacement. Or convinced myself that when I have a baby I’ll get cancer again, actually I still need to confirm that one.
I decided to take all of my ‘entourage’ in with me. My dad, sister and boyfriend have been to all of my recent consultations with me which is very important to me as we are a very close family. There are no taboos with my family believe me! 
So the original nodule I have on my lung has grown by half a millimetre and there is a new area of suspicion which appears to be much bigger. At this point the Oncologist is unsure of whether this might actually be a chest infection that I wouldn’t have shown any symptoms of as I was on so many antibiotics. At the moment there is not really anything they can do. Obviously I want them removed but if the surgeons went in to try and find them it is very unlikely they would as they are so tiny. 
Sarcomas are not always chemo sensitive either, especially at this size, so they don’t really want to consider that should things progress which is a relief for me.  
There is a new drug that is due to be released that targets sarcomas but they are unsure of when.
For now they want to carry on monitoring me closely and I will be rescanned in three months. That will be the last scan for a while as they want to cut down on the radiation so will start using X-rays after that. 
These tumours are usually very slow growing so if it gets to a point that they are big enough to show on an X-ray then action will be taken. Radiotherapy is an option if the worst comes to the worst but I am just hoping none of this will be needed.
Afterwards my Macmillan nurse came to talk to us and advised me to “just go and live your life and forget about it for now”. She is so lovely and I’m really lucky to have her looking after me.
So, I now need to try and put all of my energy into getting my leg moving, only a few weeks left until I am admitted for my physio ‘bootcamp’ - and I tried on the disco pants the other night and they still fit. I was fearing I’d got too fat for them but luckily I haven’t. Oh the urge to rave! 

To be honest I am feeling confused and frustrated. I know it will get easier but it is like a dark cloud that looms over. I feel in limbo, once again, as now I ‘might’ have cancer in my leg and I ‘might’ have it in my lung. It’s the uncertainty that gets to me and all of the ups and downs. It’s hard to just switch your emotions constantly from happy to sad, from sad to happy, to frustrated and angry back to relaxed and calm and so on. All I can describe it as is a whirlwind of emotions and fears and at times I escape and other times I seem to get sucked in again. To me it feels more of an ‘inconvenience’ than anything.
As I’m sure anyone that has been through cancer treatments would tell you, the words that you are constantly yearning to hear are ‘in the clear’. And as I’ve explained previously that may never happen in my case which is rather crap.
In a way I wish I didn’t have to have this appointment at this stage but I am so happy with the treatment I am receiving as they are keeping me updated on every new finding and making me feel safer. And I was happy to meet the Oncologist too, as my initial fears of what she would say have now dissolved.
These feelings will pass I know and as I’ve said before once I’m up and about on my feet it will be a lot better.
I’m not looking for sympathy, I am just saying it as it is. I’m not going to lie, these things do f**k you up every so often so the only way to be is open and honest about it. 
I am far from unfortunate, I am very very lucky as I am surrounded by wonderful family, friends and my boyfriend who all support me and I can talk to. And an amazing hospital taking care of me.

But yeah, that’s what’s been going on lately so thought I’d update as it’s been a while innit.

Over and out :)

I never expected this to happen, I expected (and wanted more than anything) to be one of those people that bounce back straight away, go and live life to the full after cancer treatment and achieve their happy ending. I did have plans at the beginning to do this, LOTS of plans. But with every setback I encountered it felt as if my life was being ripped to pieces in front of me, I wanted to know why things kept trying to hinder my recovery and it would drag me back down further into that dreaded dark pit of despair each time.

I questioned why this was happening to me and felt a great deal of resentment. I missed my old life so so much. Why did it all have to turn so s#!t?!

From the outside I guess it was not that noticeable to most people, I'd keep up a front because I was terrified of people finding out that inside my heart was breaking and I felt absolutely torn to pieces. Which is a classic sign of depression but I just kept thinking ‘don't let them down, keep the brave face on and do what's 'expected' of you’. It was a constant fight with my emotions and behind closed doors I was a total wreck, I'd lay awake at night over thinking, crying my eyes out because I just couldn't look forward and that scared me more than anything. My future hopes and dreams that I'd built up over the years were gone, just replaced with a blank. And my relationships with those around me, even my closest were beginning to buckle under the strain.


It was around May last year that I finally swallowed my pride and asked for help, which was the one of the hardest parts of the whole process. It's not easy when you go from being happy go lucky, taking things in your stride to suddenly not wanting to see people, stop doing things you'd previously enjoyed and sometimes going to sleep and dreading waking up the following day. Constant irrational thoughts like these would plague my mind. I was petrified that if I admitted what was happening to me that I’d let everyone that has been supporting me through this time down, I didn't want to be judged, I didn't want to be seen as a drama queen but I knew I couldn't go on living like this anymore and something had to change. Tbh, I felt really s#!t, most of the time.

Without sounding all woe is me, I've had some pretty awful experiences in the past and just ‘got on with it’ so it was very out of character for everything to come tumbling down around me but more so for me to allow it to. The 'old me' would have dug her heels in and told it to 'buggar off' but not as lightly as that.


Anywayz, after many gruelling assessments I was finally diagnosed with depression and PTSD (yep, don't do things by halves!). I was offered a place on a prestigious programme and have been attending for the past few months. I have only just completed the programme and without sounding all #ohmydayztherapychangedmylife about it, it really has helped me and I can see and feel the effects in my thoughts, behaviour and emotional reactions to situations. I know it's only early days yet so I must not jump the gun. Don't get me wrong, it's been really horrific in parts, emotionally draining and I still have 'off' days but different techniques used have been helping to ease up this messy 'ead of mine. A lot of things have happened recently that have coincided with the therapy too, so these factors may be a driving force that contributed to having a clearer head but whatever it was, I aint complaining!



I know that cancer can target anyone and people have to deal with it in their own way. You are not told about the emotional effects you may encounter, you are not told about the possible months you may spend crying wanting everything to just f••k off and give you a break. Of course you are not told this because you are expected to be strong and put all your energy into fighting.


You won't let it win but it definitely puts you through your paces!


And that's fair enough, it's expected that the main focus will be that happy ending but don't be afraid if this takes a little longer for you. When I was experiencing depression at it’s worst, I was convinced that I must be some bad exception to the rules and that I'd done it wrong because I didn't feel I could jump for joy at what should’ve been the end of my treatment, I was still living with the effects and being treated for various complications. I felt empty, lonely and frightened.

 Overall what I'm trying to say is that is completely NORMAL to feel this way, and not to beat yourself up about it, you are not a failure and there are no rules.

You could have the worlds biggest support network but still feel alone; this doesn’t mean you are ungrateful.

Help really is there should you need it and it may take a while to start experiencing the positive effects but you will be on your way to your own happy ending at some point.

I would like to thank Ann-Marie for taking the time to write this piece, and share her experiences. You can read more about Anne-Marie through her own blog, 'One girls quest to rave'

Wednesday, 13 February 2013

Loneliness, the side effect with no cure

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thursday, 7 February 2013

The affects of cancer on relationships

Whether we realise it or not, our life is based on relationships,all on different levels. We have our loved ones and family, then close friends, people we know from work, and people who help us in our lives like tradesman etc.There are people that we meet at various stages of our lives, that come and go. Sometimes it is hard to admit, but we really only have room in our lives for a few close friends outside our families.Time just doesn't permit us to form too many lasting relationships.

I know that some of my younger readers might disagree with me, particular when they look at how many ' friends' they have on Facebook or followers on Twitter,but it is true. We all may know a lot of people, but that is different.

Relationships are always interesting at the best of times.I'm sure, like me you see couples and wonder how their relationship works. Two people, who on the face of it have very little in common, yet seem very happy together. So many of my friends, are totally opposite to their partners, yet they make great couples.

One thing certain to put a relationship under strain, is something like a cancer diagnosis. I have always said that when someone receives a life changing diagnosis, the dynamics of relationships change.Some don't even last the course! One minute, your life is planned in front of you and everything is as it should be. The next minute you are facing a very uncertain future, dealing with things that only happen to other people.

Once I had reached fifty, I really thought that if I was going to get any illness I would have had it by then. I don't know why I thought that, as logic tells me that the older I get, the more chance there is of getting ill! No heart or cancer issues, I never even took a day off sick. Then, out of the blue I got my diagnosis. I was very sick with a poor prognosis. My life plan was now in the bin!

My relationship changed immediately! I couldn't work,therefore earn money. I was so weak, I had to be driven around, I was eternally visiting the hospital, I was having constant treatment, which made me sick and exhausted. My appearance changed, I lost all my hair, I went fat and thin, depending on what drugs I was on. Totally lost my libido, (unsurprisingly!) I almost lost my will to live. All the roles that I was fulfilling in my relationship, I could no longer do.

As it turned out, my perception of the new me, wasn't at all the one that my family had. I felt totally helpless and relied on them for almost everything.That feeling is very difficult to imagine unless you have experienced it, but for someone as independent as me, it was almost as bad as the disease itself. I had changed from being a driver, to a very helpless passenger in my relationship.

I can really understand, how something like this puts pressure on peoples relationships. All the things that we enjoyed had been taken away, and I felt guilty, for the sacrifices my wife was making. Of course it wasn't my fault, but that is how I felt.To a degree I still feel that way today.

For me, without the help and support of my family, through these tough times, I don't think I would be here writing this, but I know lesser relationships could have crumbled. I know of partners that have left because of the illness. They just couldn't cope. Others start off ok but struggle if it is a long term battle.Some relationships get stronger, and others collapse.When so many of the factors, that a relationship are based on are taken away, other factors can strengthen, to compensate, but that is not always the case.

I have briefly touched on the effects of a cancer diagnosis on your personal relationship. Now just imagine, the effects with your employer, and the knock on with your finances. Stress is the last thing that you need at a time like that, but that is the one thing that you will have in abundance, whether you like it or not. It will be then that you will find out, the strength of your own relationship.

Living with the new me is the relationship I find the most difficult. I'm not sure if I will ever get used to that.

Friday, 1 February 2013

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!