Makes me depressed
No wonder there are so many other long faces waiting in Outpatients.
Does this strike a chord?
“We like to think of the end of cancer treatment as the closing of a chapter,
but what most people don’t realize is that the emotional struggle continues long after”.
So says Dr. Oeffinger, a primary care physician and director of Memorial Sloan Kettering Cancer Center’s adult long-term follow-up program.
Sloan Kettering is one of most respected cancer treatment centres in the world. So Dr. Oeffinger knows of what he speaks, and goes on to say “Feelings of post-depression and anxiety are amazingly normal. I would go so far as to say that if you don’t have them it’s a surprise.”
Bless you, Dr. Oeffinger. You made my day.
So there !
However much we (and our families) would like to think that finishing hospital treatment means the end of cancer – it’s not.
Next comes dealing with long term side effects from the drugs used in our treatment; this can be tiring. We still need help, but doctor after doctor says they don’t know; so what about ” I don’t know, but I will find out”?
When medics tell me there are problems, I try to think how to get around them, so turn to Googling to find a solution. I have a theory that medics frown on Google, because they know information is there, don’t have time to look it up, but don’t want us to know more than them!
After we finish treatment
Trying to be positive, there seems a quicksand of gloom in which we get trapped. From the Nurse, who – hands on hips – told me “You are ONLY a patient”, to the dis-interested doctors who shook their heads over drug side effects, and told me they had never seen these before, it seemed as if problems were all my fault.
Made to feel a nuisance, I was constantly told I was the only one with a specific problem. Then I read Suleika Jaques, writing in the New York Times, and quoting Dr. Oeffinger. And this had me bouncing out of my chair.
My llghtbulb moment
Then came some back-up words of wisdom from Roy Lilley of nhsmanagers.net. this time aimed at NHS staff, bogged down with targets, paperwork, admin etc:
1. Cleanse stupidity out of the organisation – ask staff to list the dumbest things they are required to do and then find a way to stop doing them. Show you mean it!
2. Challenge: questions about “What could go wrong?” and focus on “What must go right?” Then put things in place to make sure it does, all the time, every time.
Do this, and they might be able to focus on our problems. rather than thinking of which form they must fill in to report our ‘outcomes’.
And even more Helpful
I heard Mark Davies talk about his cancer experience. Normally, I run a mile from fellow cancer survivors talking about their ‘cancer journey’. But Mark is hilarious. He is an advocate for Bowel Cancer – sorry, I’ll rephrase that –
Author of the book “Saving my Arse”, he gave a very funny talk at a Wellness Day I organised, on how he managed to get Papillon treatment, named after the Frenchman who developed this. And how he managed to get the NHS to treat him this way.
You can get the book on Amazon, or from Beating Bowel Cancer.
Listening to Patients
His medics listened to Mark, and boy – he has repaid this in spades.
But there are still too many cloth ears around.
I felt desperately sorry for the team treating me. Having told me nothing could be done about skin lesions popping up after I started on Tamoxifen, I went to a speciaist French centre. After treating me successfully, they kindly packed up a large box wiith samples of treatment creams, plus clinical trial notes written in English, as a present for the nurses treating me in London.
Prouldly presending these nurses with the box, and showing off my smooth skin, I found them strangely dis-interested. A short time later saw box, and clinical trial notes, dumped in a waste-paper-basket.
If they were suspicious about the creams – all they had to do was read the clinical trials notes. But were so arrogant, having told me there was nothing to do about my skin problems, they couldn’t even be bothered to find out why or how these lesions had cleared up.
I found that desperately sad.
I am going to need medical help for yeas. Didn’t use NHS whilst working because I was coverd by medical insurance, I reckon the balance sheet definitely shows in the NHS’ favour. So I shan’t feel sorry if I still have to ‘work the system’ to get proper treatment.
With Dr. Oeffinger and Mark Davies as examples: NHS – You have been warned! I am NOT taking No for an answer in future!