Supporting people affected by cancer

Normally, I like to have my new blog post written and launched by Friday each week, but since the increase in my treatment regime, and prior engagements made long ago, this week and next are particularly difficult and will find me writing at the w/end. However, another reason for my time issue, is that I have had contact from 3 people, who I have encountered in very different situations, and have asked for various forms of support with their issues.

This prompted my thoughts for this post. All of these people are unfortunately, 'experienced patients,' with family, friends, and medical teams around them. However they have chosen to contact me, regarding their issues. I wrote last year that it was 'time to look at the ways we offer support' but I also wonder if some of the support we need as patients, is just not there at all? Maybe we don't even know what we need?

Giving and receiving support is extremely difficult in a lot of cases, particularly when something like cancer is involved. There is no rule book, to guide either party. You as the patient, don't really know what you need until it becomes apparent, and your loved ones/friends can't understand what you are going through. Also if you are anything like me, you hate asking anyone for anything!

Experience has shown us that most people don't feel comfortable discussing certain concerns with either their clinicians or loved ones, for a fear of 'burdening' them. It is also extremely difficult to have to admit to people you know well, that you are finding things tough. Particularly if you are the person that people normally look to when times get difficult for them!

I have met a lot of people affected by cancers similar to mine, and many that have gone through a stem-cell transplant, like mine. However I can say that without question, everyone's situation has been unique. Personal circumstances, treatment regimes, health prior to diagnosis, complications after treatment, and the psychological effects on them from the whole process.

The word support means different things to us all, and we can offer it in different ways. One increasingly common method now, is by giving information. Surveys have shown that informed patients are more likely to take control of their care pathway, which will result in improved outcomes. This is great, but speaking personally I do not feel supported at all, by a handful of booklets! This is only a small part of the story. Knowing what may happen to you, and what the treatment is likely to do, is helpful, but also frightening. What do you now do with that information?

As my life has taken me in this direction I spend a lot of time in the company of people affected by cancer. Not only patients, but professionals, family, friends, and organisations working to improve things. I also have a lot of communication with people who contact me via social media. I am still shocked, how many people cannot find the support that they are seeking.

Why is this? Possibly, because what we require, can change from day to day. As our world goes through the 'high-low' process, our needs are constantly changing. Many things that occur for us, are outside our personal experience boundaries, and we have no 'back catalogue' to drawer on.

It seems that my personal experience, is the major qualification, in the support process. One of the reason's that I started doing the work that I do, is that I 'get it!' Much as people tell me about different schemes and projects that are starting, or already exist, there is no credible 'official' system that caters for what is required.

 

Maybe, a chance conversation, or a blog post stimulating your thought process, may prompt
the support you have been looking for. Social media has opened up the support arena greatly, and there are millions of us sharing our experiences with the world. I know I have received huge help from this area.

In summary, I'm very happy to be able to help where I can, and feel privileged to be invited into very personal areas of peoples lives. Unfortunately, I am unable to offer a solution to the professionals who ask, how can we improve things for you guys? I am not convinced that there is anything 'official' that can. Cancer will always create different 'grey areas' for all of us. Definitely a place where 'one size does not fit all!'

Do you feel that you are able to access the support you feel you need?

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.