Do you know that feeling of isolation?

This week has been an incredibly busy week on social-media for me. Last weeks post found it's way to many lovely people out there who shared and shared, till I think at last count we had 31 re-tweets of one link alone! Although my work is cancer focused of course, I try to talk on subjects that will affect all of us at some stage.

Watching the news in recent weeks, I was shocked to see how physically isolated, a lot of our older generation has become. Nearly 1 in 5 older people are in contact with family, friends and neighbours less than once a week; and for 1in 10 it's less than once a month. Half of all older people in the UK, about 5 million, say the television is their main company. This seems like it may be a cultural issue, with many older people preferring their independence, and not wishing to feel like they are a burden on their family. However that feeling of isolation, can be a very destructive force, first mentally and then eventually physically.

I have chosen to talk about the feeling of isolation today as I feel that it is one of the major side effects of a cancer diagnosis, and one that unfortunately is very difficult to deal with. The first major hurdle is actually recognising the problem. Then an even bigger issue is acceptance. If you have never had those feelings it will be very difficult to understand, how someone can feel isolated, particularly when they are continually surrounded by family and friends, which many of us are.

 

 

During my frequent meetings, with people affected by cancer, I am continually shocked, how I have to actually ask people if they feel isolated. It is something I have encountered, that affects almost everyone I talk to. However, many people feel awkward about mentioning it. I have also found it is a subject that is hardly ever discussed between partners. The main reason I have discovered for this, is the fear that the other person will not understand.

This is yet another side effect, that is rarely talked about openly. Doctors don't ask, and patients don't mention it. Something else to make the situation more complicated! Every diagnosis of cancer is unique, and will affect everyone differently. That is why there is not one single answer to this. But in most cases, it is not about taking more drugs or seeing a counsellor, which tend to be the common alternatives, if you mention that you feel differently, either psychologically or emotionally.

My feeling is that unfortunately, we are all seen as our disease, and not necessarily as a 'person.' When we see our clinicians, rarely are they able to see beyond what is wrong with us, into our life, and the part we play in society. A father, a husband, an entrepreneur etc. None of that rarely comes into the picture. This is where I feel we need a much more holistic approach to treatment.

There are signs that at last these issues are being recognised, with the introduction of a Holistic Needs Assessment Tool, developed by Macmillan Cancer Support, but that is still at the 'pilot' stage. Also the very successful #notalone campaign, which is raising awareness of the isolation issue. But in my opinion, so much is still left unsaid to the patient.

I see a massive irony here too. Despite the fact that we are finding an increasing number of ways to communicate with each other, we are also struggling more, with the feeling of isolation. How crazy does that sound? This is not only true for people affected by cancer. I mentioned the example of older people earlier, but if you really think about it, there are times when we all struggle with those feelings.

Whilst at school, or at work, or in a social gathering, we have all had times where we have felt isolated. Not physically, but mentally. Simply put, if we feel that we are different to other people in any way, we can feel isolated. Most of us are independent, and prefer not to look for help, we maybe see that as a sign of weakness? I'm quite possibly one of the worst examples of that!

For me, social-media has been one of the greatest tools to help with that feeling. Of course, I am the only one travelling my journey, but I am aided by others who have also travelled it, who are there for me when needed. There are no hidden agendas, and they ask for nothing in return. They just 'get it!' Unfortunately, many people who would also benefit, are as yet unable to sample the joys of the Internet, due to lack of knowledge, or affordable equipment.

In summary, the feeling of isolation after a cancer diagnosis is fairly normal, and is one of the main reason's I started this blog. I can't pretend to know the answer, but my offer for improvement is to make patients aware of it early on, so they don't feel that they are the only people feeling like that, as many still are today!








































 

Young people deserve better cancer support!

My favourite area of work is with young people, and there are two main reasons for this. The first is that I just love the enthusiasm and energy from this group, but secondly, I am genuinely shocked, at how little support is available, and I want to make some noise about this!

By chance, I have spent the last week, involved with some young people. I have attended a presentation by Shine Cancer Support and was privileged to meet several, vociferous people. I also met many young people raising money for Macmillan Cancer Support #CoffeeMorning. Since then I have been in regular contact, with others that have found me through Twitter.

Experience shows me that, services are ok, if you are very young, teenage, or 'middle age' but the group of 20s 30s,and 40s is largely forgotten. There are specialist units and charities that can help support you in your earlier years, but what happens when you move from being a teenager, to becoming a young adult? It seems that you start falling between the large cracks in cancer support.

I was 50, and very worldly wise when I was diagnosed, but I struggled to find the appropriate support I needed. So I am not at all shocked to hear that young people, who are just starting to find their place in the world, can't find what they need to help them, when facing a cancer diagnosis. My opinion is that in the past, this group, has not really had a voice, but with the now vast, use of social media in this age group, people are beginning to join up, and fight this inequality.

Many of the issues that this group face, affect them so differently to others. Fertility, relationships, education, and living with uncertainty, are just some of those. These decisions, are life changing, and difficult to make if you are in perfect health. Imagine the pressures you may face when dealing with cancer too.

During one of my many recent conversations, dating was being discussed by some young ladies. They were all talking about when they should tell any new partner about their cancer! At the start of the relationship, over a dinner, of just before hopping into bed? This was particularly poignant for anyone who has had surgery. We were all laughing, as we imagined some very strange scenarios. But the point was well made, and so important.

The ease with which these issues are discussed peer to peer is very refreshing, but the biggest problem I see is the difficulty in communication between this group and the health profession. Generally, it is like there are two different languages being spoken, and both groups struggle to understand each other at times.

Unfortunately, I cannot really think of the answer to this issue, even if there was an unlimited supply of money. But what I am really aware of, is the difference that communicating with someone, who has faced/is facing similar to you, can make. There are national charities that facilitate forums etc, but I am not convinced that this is what is needed. Unfortunately, although these are very safe areas, on the whole they don't truly represent what is happening in real life. There are many unofficial communities forming which are much more real, but still safe.

Small, local, and more welcoming support, seems to be what is required, but the way that marketing is done these days means that local organisations are constantly struggling for funding. What I have also seen is that, particularly with this group, the people running the support, need to have a greater connection to the people receiving it. I constantly see people in charge of large budgets that have no idea, of the issues that the people they are trying to help, are facing, they are just too disconnected! A common issue across most support agencies I feel.

Enough from me! I have attached a part of a blog from an amazing young lady. Sam has written a couple of guest posts for me, which have had tremendous impact. She writes in that very refreshing and blunt style, that I was referring to earlier. This piece is an example of the issues that these young people face. She refers to her experience with radiotherapy.


"I can't look at this mask any more because I am now coping with my cancer more than I did when I was being treated. I now have the time to think about everything that happened. And the more I think about it the harder it has become. I have nightmares, panic attacks and anxiety pains when it comes to thinking about cancer, just last week I convinced myself I had bone cancer and this week I was convinced I had a brain tumour, I know I don't but thinking about these things gives me pain which makes it worse! And theres no not thinking about it. Cancer has taken over my life. I have become my cancer. Oh bollocks!

I've thought about counseling but that's not something I want to do again as it has only helped 1/3 times for me. 
I've tried keeping it to myself but it only got worse.
I have my follow up next week and I'm hoping there is something or someone who can help me!

I look strong and healthy and like it never happened to me but my thoughts and emotions are only just deciding to catch up and look for healing help.

I honestly don't know whats worse, this torture of my thoughts going crazy or the constipation that came with chemo (I still don't poo the same!)

So please, someone tell me how to get rid of Samantha
And if anyone has any advice that doesn't come in a leaflet, that would be fab. I know we are ALL different in our cancer but there has to be someone out there who's had all this too!"

I definitely couldn't have put it any better myself Sam, and many thanks for letting me use this incredible piece. To hear more from Sam you can follow her on Twitter @sam_lightyear
or keep up to date via her blog

Celebrating life and sharing the legacy

The last few weeks have been particularly tough for me mentally. After more than 6 years on my 'bumpy journey,' I have seen so many heart breaking situations, many personal, but plenty from friends and colleagues. I have often thought that I have experienced so much in the cancer environment, that there surely can't be anything left that can shock me and pull on my heart strings. But there always is!!

Ironically, my personal health has been the steadiest it has been for some time. The good weather has finally arrived, and the constant threat of colds, flu and chest infections, has subsided for the time being. My maintenance treatment is keeping me mobile, and I am slowly peeping back into the real world again, although with caution, I might add!

Due to my commercial background, I consider myself to be in the 'cancer business.' It also feels like a business, because it is what I spend a lot of time on. As with any business, there are certain things that will always be part of your work. Unfortunately, in this environment, death is very much a part of what we do. Nobody wants that, but it is a fact. Given that this is the case, we must expect to deal with it.

How we deal with things when someone 'passes,' is unique. We will all have had different relationships with that person. Some of us will be closer than others, family and friends, then colleagues etc. There are no rules how we say goodbye, we all do it in our own way. Interestingly, now days, most ceremonies, have a religious basis, but things are even changing here. People are starting to personalise things, to reflect the wishes of the individual.

 

 

 

Yesterday, I was celebrating the life of an incredible young lady. I was fortunate to be a friend and colleague, and my personal experience of a stem-cell transplant was helping her through her own set of unique circumstances. In her young life she touched so many people, with her boundless energy, warmth, and enthusiasm. Even though she was going through her own personal trauma, she would be campaigning or fund raising for cancer charities.

In reality, she only lived, half an average life, but the things that she managed to achieve in such a short time, were probably more than most of us could manage in a lifetime. Her impact cut across generations, and there was such a mixed community to celebrate her life together. We were all recalling our favourite moments, of which there were many.

But this is not where the story ends,nor should it. Her legacy will live on! She has done so much campaigning in the cancer field, that you won't have to look too far, to find a video or a magazine article written or presented by her. The impact she had on others was incredible. She certainly helped improve lives, whilst she was able to, and I'm sure that so many new lives will be positively changed in the future, by her work in the past.

I guess that when most of us think about the word legacy, it involves finance. For example, what we might leave for our children when we die. Since my life has been affected by cancer, my thoughts turned to my own legacy. I have been extremely lucky and have managed a few extra years beyond expectation. This has allowed me to put certain things in place which can hopefully continue, beyond my own life time.I am also trying to play my own small part in improving the lives of people affected by cancer in the future.

I am celebrating the lives of my friends who have died recently. They have had a massive impact in my own life and work, and will continue to. I know that their legacy will live on long into the future, and that their families are very proud of what they were able to do. I am so grateful, to have been a small part of their life too.

This post is dedicated to Bengu Shail, and her family. Thank you for being my friend, and for the legacy you have left us. A brilliant example of Bengu in action can be seen in this video please take a few moments to check it out.