In brief - why I'm blogging.

You may or may not be interested in my story. It is the story of a year's journey in my life and It follows this structure - equilibrium, catastrophe, looking for solutions, resolution - except resolution has not happened yet.

I am blogging because I have a strong sense of right and wrong, and what is happening to me at the moment feels very wrong.

My journey began when I was told I had breast cancer. That was in November 2010. It was a huge shock to say the least. I had been fit, healthy, ran, didn't smoke or drink - so how could this have happened. But it did happen and I just had to get on with it. Until this point in time I had been working hard, playing hard and everything felt good. I had always had the attitude that you have to squeeze as many minutes out of everyday that you can because life is short. I still have this attitude, although it’s more difficult at the moment as I have not yet fully recovered from my experience of cancer.

In December 2010, 4 days before Christmas, I had an operation to remove the cancerous breast lump. I also had a sentinel node biopsy. I had to wait longer than normal for the results of the biopsy as Christmas fell at a weekend and there were endless bank holidays. When I finally got my results, I found the cancer had travelled and I had to have another operation in January 2011 to remove all the lymph nodes under my left arm. Two operations in four weeks left me feeling quite wobbly. Following my second operation I had to have physiotherapy for cording under my arm – a very painful experience.

At the beginning of March I began chemotherapy. After the first session, I ended up being admitted into hospital with bronchitis. I was in hospital for 8 days. My next session of chemo had to be put back a week because I was so ill and was affected quite badly by the chemo. I was admitted into hospital again after the fourth round of chemo because I had suffered such adverse effects to the treatment.

Throughout chemo I had every side effect going. As well as the usual sickness, nausea, mouth ulcers, thrush, hair loss, I lost all the skin off the soles of my feet, lost my finger and toe nails, lost all feeling in the tips of my fingers, and suffered severe joint and muscle pain. Before I had started chemo several people had said to me 'you’ll be ok because chemo isn’t as bad as it used to be'. Well I can tell you that it is. Not for everyone - some people sail through it. But for those that have adverse effects, it is a living hell.

In July 2011 I began a three week course of radiotherapy. This caused extreme tiredness. Bear in mind that I had just been through the big ordeal of chemo. By the end of July I was exhausted.

But, as radiotherapy ended, I looked forward to putting it all behind me and getting on with the rest of my life. I looked forward to squeezing every last minute out of everyday. I started on 5 years worth of hormone therapy and was put on Letrazole. OMG!! within three days of taking it I had severe arthritic pain in all my joints and could hardly walk. I couldn’t get upstairs, I couldn’t life my arms, my fingers locked and I couldn’t flex my feet. I was encouraged to take this medication for a couple of months as it is the most effective, but when I finally changed to Tamoxifen, I was in a very wobbly state and in a great deal of pain.

Now, at the beginning of April 2012, I am still suffering from some of the side effects of chemo and Letrazole. My skin Is still peeling off my feet. I still have joint pain. If I sit for too long my hips seize up. When I come downstairs in a morning, I still can’t flex my feet. I walk like a penguin for about an hour.

I am now working 2 hours a week and am slowly building up my strength with a view to getting back into full time employment in the summer. My doctor advised me to take it slowly. My adviser at Job Centre Plus advised me to take it slowly. And to be honest I can’t do anything but take it slowly, because after 2 hours work, I’m exhausted. Now I have never done exhausted, so this is a bit of a shock to my system - along with the emotional effects of cancer and the fear of it coming back. I thought I would have been fit and back to normal by now but that is not happening.

Now this is the point where I will wind myself up as I’m typing. This is the point where I cry because my sense of right and wrong is very strong and anything that doesn’t fit in with my moral code, my value base can cause me to feel a sense of injustice.

I am currently claiming ESA. That is because I worked for a private company who only paid me one month’s pay when I went off sick with cancer. I went onto Statutory Sick Pay for 28 weeks and then was transferred onto ESA.

I naively thought that when I had cancer, the benefits system would support me through the traumatic journey – after all I had paid into it all my working life. And I naively thought that I would be able to recover emotionally and physically from it and return to work when I was fully recovered. Not so. In October 2011 I received a letter from Job Centre Plus, which as good as said I have to go for interviews with a view to getting me back into work. I was so shocked and upset. I was trying my best to get better, trying my best to get back to normal, but I was still in a lot of pain. I had no idea that I would be pushed back into work before I was fully recovered.

That was in October. Now we are in January 2012 and I have just received a letter saying I have to attend a medical assessment where a panel of people who are not doctors may tell me I am fit to return to work. If I do not pass this assessment, I will lose my benefit and will have to claim job seekers allowance.

When I look at the questions I will be asked at the assessment I can’t help but feel an injustice: can you raise your arms above your head; can you pick a £1 coin up; can you walk 100 yards without pain or discomfort; does your behaviour affect other people when you are in public. There is absolutely nothing in the questions that relates to cancer, that relates to fatigue or the emotional effects. How can you describe to anyone that your body constantly feels like a big bruise? How can you describe to anyone that if you have been on your feet for too long, the soles of your feet burn. How can you tell ATOS staff at the medical assessment why you feel you are not quite ready to work full time, when you are only allowed to answer yes or no to their questions that bear no relation to your illness.

I have not been off work with flu or a bad back, I have had cancer. I have had cancer - the big C, a life threatening illness. I struggle to understand that in their attempt to cut down on benefit freud and reduce the amount spent on benefits, the government can allow this to happen. That they are targeting the wrong people is shocking. I understand their need to wheedle out those that do not need benefits, that are screwing the system. But in doing so, they affect those who are genuinely unfit for work in such a detrimental way. It causes stress and anxiety to vulnerable people. That feels immoral and insulting to me. It feels wrong. Setting aside the physical problems that cancer and its treatment has left me with, emotionally I think I am still in shock and I am certainly still in pain. I find myself saying “ can you believe what I’ve been through this year?”

So there it is, and I am blogging because I can’t believe how badly our government is treating people, and how unfair our benefits system is.