Says it a little better than I can

A Guardian Article HERE.  "For many patients, remission of the disease is just the first step in a long and emotionally draining process of recovery"

It says much about the sort of problems I still have.  I'm not in remission either so there's still that to be tackled.  I believe remission is a minimum of 10 years clear for Bladder Cancer patients.  I cannot find the supporting information for this statement though.  I'm sure it is somewhere about there.  By remission it means completely clear with no recurrence which unfortunately for Bladder Cancer is very common.

There is more acceptance of the sort of problems we seem to get and Macmillan have a page worth a look too HERE. 

So if you might be wondering why I blow hot and cold and go up and down in terms of my demeanour, this may help you understand it.  It's probably a lot more complex but now 6 years on I'm getting a lot better and feel quite well although I'm still having problems with my diet and weight but I hope to be getting that under better control once I decide what I am going to do with myself.  I've some ideas and some avenues to explore in the next few days and then I think, if they draw a blank, that I will be looking to make some serious lifestyle changes for myself affecting work and leisure and home.  Let's see what these avenues bring first.

"Rates of depression and anxiety are very high when treatment ends," says Dr Michelle Kohn, director of Living Well, a programme that offers emotional and practical support to cancer patients at Leaders in Oncology Care, a private London-based clinic. "Other emotional issues, such as low self-esteem, anger, stress or sleep problems are also widespread."

I can vouch for the sleep problems and the anxiety and there's the other stuff like the mini panic attacks and the claustrophobia to deal with as well as my attitude problems :-)  I don't take any prisoners sometimes and appear to have lost my "diplomatic touch" somewhere along the line. I think you get past all the trauma and you have a "So what" attitude to other people's petty gripes.  It isn't (or I hope it isn't) one upmanship, it's more a case of trying to get people to get a grip and man up a bit.  Because the train is late or it's raining isn't a cause for depression and sadness :-)  

"On top of this, cancer survivors are often battling with physical and practical challenges, anything from huge financial losses, to the side effects of medication, profound fatigue, a confused-feeling known as "chemo brain", or lymphoedima (swelling). Their loved ones, meanwhile, might be increasingly baffled as to why they can't bounce back and make the most of life. "People suffer for years, often in silence, without any real support," says Kohn. "Life after cancer can actually be very difficult and lonely."

I can understand this stuff too, it is very difficult to see what my problem is, I don't look any different, I'm not horribly disfigured (although you may think so! :-) ) and it is a hidden disease to even those closest to you.  It is really difficult to get up and go when your get up and go got up and went :-)  I'm mostly past the fatigue bit now thank goodness although I can still sleep at the drop of a hat.  It's almost like passing out, I can sit watching TV and just drop off.  It's a bit worrying but it doesn't happen at work or driving or anywhere else so that's good.  

Some of the comments are telling.  There is one about guilt, the guilt of living, the guilt of not having chemo or radio, mind you as I was reminded, Immunotherapy isn't for sissies either!  But it is interesting that I felt internally bad that my dad (and some friends who have died) knew that I had survived and yet their prognosis wasn't good, how did they view me?  Well if the truth be known they were probably happy for me.  I do hope that they didn't feel any other way but I felt bad for them.  I thought about the other areas too and you see, all these things add up to what it means to survive.  It is great to be alive and to have (so far) my health coming back albeit gradually.  Dealing with the head bit is a challenge as those who read this blog regularly know.  You are diagnosed and the trauma of the symptoms and the diagnosis are just awful.  Then there is the gap whilst you think the worst and that your number is up.  Then there is the sudden realisation that there is hope and you can fight some of this and you can realistically stand a chance of survival.  You fight it on your own and you use your strength physically and mentally and make big changes in your life style.  The experience changes you in many ways and some are subtle and others not so.  You are, after all, fighting for your life and every ounce of strength goes into it.  It's exhausting, it's traumatic, it's terribly frightening and upsetting.  You keep up your front so that your loved ones are reassured by your strength of character that all will be OK and inside you are eaten away by guilt and you punish yourself for all your past transgressions, your life style, every time you upset someone and so on.  

Later on, you realise that you've been ill for sometime, there were tell-tale signs, the anger and bitter way you spoke to people, the flying off the handle at little things, the exhaustion, the inability to do anything, work or home stuff just getting delayed and having no interest in anything.  I thought I was just getting old!  I hated myself and my lifestyle but all that was in the past, it didn't do me any good reflecting back like that but that's what you do to yourself.  I know a lot better now of course.

Then there's the 6 monthly check to see if the Cancer has returned or not, you are never really free from this.

This all sounds very downbeat but it's more a case of saying that despite the fact that I'm here, quite well and clear of Cancer, there is still so much more work to do to get me out of the place I find myself in.  Gradually I'm getting there but very slowly.  I hate to admit it but I'm still struggling to get myself in a "good place" where I'm comfortable with my survival and my lot.  It is terribly difficult to describe this "place" to anyone and even here I haven't done it justice.  Of course things are a hell of a lot better now than 6 years ago but the internal damage still remains and the brain stuff never quite leaves you.