A Really Happy New Year
Jan 1, 2019. I have to share this with you. One of the worst days for the NHS and one of the best days. All in the same day.
Wow the NHS is inefficient. People say it is understaffed. It isn’t. It is massively overstaffed. There are so many receptionists, translators, administrators, they couldn’t organise another sugar in your tea. ‘But I would like two lumps please.’ ‘Do you have the correct form,’ that kind of thing.
It was my six monthly ‘post stem cell transplant’ check up, to see if the cancer had gone away, come back with a vengeance or spread somewhere else. It is not an easy day to cope with.
As many of you will know from having cancer yourself or having a loved one with cancer, you have 6 monthly checks for the rest of your life and it is fingers crossed and everything crossed and knotted everytime.
So it was a big nervous day, was I going to live or was I going to die. That was the point of the appointment.
You might have thought the NHS would try to get it right. They didn’t.
I am a guinea pig on a clinical drugs trial that some senior doctors are whispering may be an exciting new angle on finding a cure for cancer. It is not a miracle cure that wipes it out as they used to by burning, cutting or killing it with chemicals, (radiation, surgery or chemo) but a gentler way. A maintenance treatment. You might have an incurable terminal disease but let’s not kill it, let’s just maintain it at a level you can live with. It is a never ending battle until your last breath but the doctors cheerfully tell you, ‘if it works, you will end of dying of something else.’ They like to have a laugh. Ho ho ho.
For the New Year break, the weekly trial blood tests were rescheduled in Canterbury, my local hospital and the 6 month blood tests at UCLH in Euston Square central London, scheduled at the same time. But then it is the same blood, my blood. And actually it is the same test, they are looking for protein.The trial ones have to be done every week simply because it is a scientific trial and the pharmacy won’t make up a new batch of drugs for IV injection until they get the results.
I rang Canterbury first at 8am and got a pleasant admin girl who forgot to pass on the message until 10am when I was already in Orpington and halfway to town. The message was brilliant. ‘If you cannot make Canterbury hospital before 11am you are off the trial, you must keep the appointment, is that ok, so we will see you then, bye.’
I rang London, the HQ of the trail. Professor Kwee Yong has spread out 250 cancer patients in hospitals all over Britain. She had demanded I come to London, surely they couldn’t throw me off for doing what the boss had asked.
I like Prof Yong. I have to say I thought she was a cleaner when I first met her and wondered when the real doctor was going to arrive. At least her office is spotless. She is nonetheless one of the brightest sparks in the NHS and her last trial assessing the impact of exercise on cancer has changed the outlook and attitude of pretty much every cancer patient in Britain. Her trials are cool and groovy and seem to work and the nurses do her bidding.
“Get out of bed at 8 in the morning. I don’t care how tired you are, go for a walk or run on the beach. You live on the beach (I do) make use of it. You can go back to bed later. Do not lie in bed feeling sorry for yourself, get out there and do some exercise.”
You know what? People with cancer live longer, not massively but actually quite a bit longer if they just do that. And if they have a support network and plenty of people to talk to, up to twice as long.
I couldn’t get the great prof herself but someone in admin at UCLH said you need to stay on the trail at your allocated hospital, race back down to Canterbury.
I have a Mercedes 350SL with a top speed of 150mph, it was just about possible. I hammered it out of Orpington and started back to Canterbury. The phone rang. It was admin again in London, “We can do the Canterbury test here, come back to London.”
Handbrake turn, tyre smoke..
Canterbury rang: “We are a different trust, we do not share results, you must do the blood test here.”
I rang London: “If that’s what they say, you had better go to Canterbury.”
Handbrake turn, tyre smoke..
It was 10.30am. I rang Canterbury. “The pharmacy will not stay open to prepare your treatment, you are off the trail.”
This was my life. How casually it might have ended.
I rang London; “Oh sorry I have just cancelled your appointment.”
I rang Canterbury: “You are cancelled here as well.”
I said: “It’s the same f***king trial, we are trying to find a cure for cancer, the big boss asked me to see her in London. I am going to f***ing London.”
“Well there’s no point you don’t have an appointment.”
I parked the car and got on a train. Christ keeping your stress levels down by jogging down the beach keeps you alive, this was killing me. My heart was beating too fast I had to relax.
At UCLH there are two or three receptionists downstairs and about 8 upstairs on about every floor dishing out pieces of paper.
I rang Canterbury: “I am in London I am going to phlebotomy I can tell you the result over the phone.”
“Ok cool no problem.”
Er “Ok cool no problem?”
“We can make an exception the pharmacy closes in 15 minutes.”
OK so this nurse, thank you Hannah, was too cool for school..
Phlebotomy, great word, dreadful shambles, said: “You don’t have the right form, you have to go to 4th floor reception.”
Admin on the 4th floor said: “You can’t have a form, you don’t have an appointment.” There were eight receptionists, I counted them.
“Can I have the blood test form from 6 months ago?”
“Yeah alright,” said a girl who looked a little grumpy.
It’s the same test.
I had the test at 1 in the afternoon. I had been zig zagging between London and Canterbury since 8am.
The drugs trial is keeping me alive, it’s really quite important.
Lovely Hannah, a real nurse, in a real uniform with some real training came to the rescue. At 3 in the afternoon she had organised another nurse to email my bloods from UCLH and persuaded the pharmacy to stay open to make the magic potion, which apparently takes two days, then has to been kept chilled and in the dark and even then if they don’t IV it into your veins it goes off in a matter of hours. It has a really cool name too, Zoledronic acid and Carfilzomib. You also get Flash Gordon to administer it. Have we got the Zoledronic acid doctor lets zap it in his arm and save this man’s life. Good job. To infinity and beyond,” Or was that Buzz, whatever.
At this point a secretary emerged and asked if I wanted to see another Consultant as my appointment with Yong had long gone. Ding dong, would I yes please. She went to see the receptionists who had multiplied to about 27 to see if it could be put into the computer.
“Oh bollocks, this one has a free space come and see him now.”
You know what? No what Paul, tell us. My experience of the NHS is…. the doctors and the nurses have to find a way of organising things so the admin and the receptionists don’t know about it. The pen pushers work on one level and the real work goes on in spite of them. Any way to avoid them the better.
And then I was ushered into the replacement doc’s office. I checked his name on the door, then looked at his name tag Xenophon Papanikolaou. I am sorry but I didn’t know where to start. Hello doctor X, er are you Greek?
He was the loveliest man in the world. If only I could fly, I would be off to an island tomorrow. They have such lovely understanding, considerate, clever doctors. Not rude or grumpy at all. Ahhhhh, my blood pressure fell, I was alive again. He had time, he answered all my stupid questions. “Can I have green tea, will I ever be fertile again, meat and dairy make me throw up after chemo, shall I go vegan?"
His answers were, “You can’t have green tea after Carfilzomib as it stops the drug working but after 24 hours no problem. And yes if you want to have a baby, you can, the sperm recover quickly in 6 months, and vegan, you can try it if you want. And oh your tests are back and they are excellent. You are in remission. We can detect some protein but it doesn’t mean the cancer is still there, it might be a hangover from the transplant.”
Can you cry in hospital. Cry with relief. Cry with the brilliance of some doctors who are and I am going to repeat it, “whispering at a cure,” for cancer. Cry for the determination of some nurses who fight for you to stay on the trial when admin throws you off. Cry with rage and frustration at all the zillions of morons who are not doctors or nurses. They walk up and down wearing trendy, casual office garb, acting like they own the place and pay themselves squillions and just get in the fucking way..