Monday, 20 February 2012

Back to life, back to reality

After the high of last week in Rome, this week it's back to life, back to reality....

...Yesterday, I learned that the mother of one of our close friends had just died after living the last few years with Altheimzer's disease. Today the funeral takes place of of Patrick, whom I used to work with at Oxford City Council. He died from a brain tumour after being diagnosis with advanced metastatic prostate cancer in May 2010. Tomorrow we are going to another funeral; my cousin lost her husband John to prostate cancer, first diagnosed in February 2009.  We are thinking of you all, and sending our love.

If nothing else, all this sad news brings home to me just how lucky Steve has been, still enjoying life two years, nine months and four days after being diagnosed with mesothelioma in June 2009.  

Memories of that time came flooding back to me yesterday, when a large brown envelope arrived in the post containing a form to reapply for Disabled Living Allowance (DLA), which runs out in April.  

The DLA is paid automatically to everyone diagnosed with mesothelioma; this type of cancer is usually so aggressive that 60% of those with the disease do not survive more than a year after diagnosis.  Given the poor prognosis and the fact that there is no known cure, it is considered to be a terminal illness.  

For those classed as terminally ill, the DLA payment is fast-tracked under "special rules" where the application is supported by a form signed by a doctor to confirm the diagnosis.  We still have the patient's copy of Steve's original mesothelioma diagnosis form.  However, being unsure whether he needed to get a fresh one to support the renewal application, I phoned the Helpline number on the covering letter for advice. 

Having explained why I was ringing, there followed a rather strange conversation. I was told that the "special rules" form was only for people who are terminally ill and not expected to live more than six months. As my husband is still alive over two years later, the doctor should not have filled in the form back in 2009 when he was first diagnosed. Hearing such words was not pleasant.  It felt like the person at the other end of the phone wanted me to feel guilty that Steve is still alive, in spite of the odds being stacked against him.  

I explained that mesothelioma is incurable and usually aggressive; my husband was one of the lucky ones who had lived longer than the median mesothelioma survival rate. However, as the person on the other end of the telephone clearly had no idea how to deal with someone in Steve's position, I simply repeated the original question, rather than get into an argument.  Does he need an updated form confirming his diagnosis?  The answer was yes.  So here we go again....

I have to say that Steve finds the whole thing very difficult. On the one hand, he feels uncomfortable about receiving an allowance for a disability which, since recovering from the side effects of chemo, has not hugely affected his ability to lead a "normal" life, or at least as normal as life can be when diagnosed with a terminal illness. On the other hand, he knows that things could change for the worse very quickly and when that happens - as it will one day, inevitably - we will need all the support available, as soon as possible.  Having to live with that knowledge is stressful enough.  The thought of having to go through the bureaucratic sausage machine to ask for help when that time comes is not a nice one.  That's the reason why people with mesothelioma are fast-tracked for DLA under the "special rules".  

Having heard my account of this phone call, Steve did not feel inclined to re-apply for the DLA under the "special rules" and may be not at all, until his health worsens significantly.  However, having looked again on the Mesothelioma UK website at the information on benefits and allowances he is entitled to, he came round to the view that a decision about whether the special rules for terminally ill people should apply to him was the doctor's call, not his.  And that's where we've left it, with the GP. 

The last expert to give Steve a prognosis hedged his bets, stating "On the evidence presently available, I estimate his life expectancy at 2 years, but with a significant chance that he may survive more than 3 years and a significant chance that he may die within one year." That statement was written in April 2010.  I wonder what the doctor will say in now, in February 2012?  

Ironically, the "special rules" DLA form does not require a prognosis, simply confirmation of the diagnosis which is not in dispute...

Apologies for this whinge.  Normal positive service will be resumed as soon as possible.


  1. The faceless state system at its worse, about as much empathy as a brick. Like Steve, Ray feels very uncomfortable, as the meso isn't affecting him too much at the present- but as you say things can change so quickly. The whole thing is just so stressful but as you say it's the diagnosis not the prognosis that matters, and unfortunately that bit isn't in dispute.

    Hope I deal with officialdom as well as you did , would have found it very difficult not to completely lose my rag.

    1. I know what you mean Amanda! However, I take comfort from the fact that such calls are recorded and hope that the person on the other end of the line realizes how they came across if/when it gets played back to them. A good lesson in how not to do it!