Sunday, March 27, 2016

Dear Jeremy Hunt - The Beginning of Cycle Two

...did not go well. We were asked to come in for 2 o'clock which is the beginning of visiting hours on the wards. I couldn't find a parking space. In the end, I dropped Dave off and drove around the carpark twice. On the third try, I had to pull in, to ring the Great Ursus and promptly burst into tears. You see Jeremy, this is why I go to therapy I can't afford on Fridays: I look like everything is okay (or at least I try to give that impression) and then something slightly untoward happens and I have a meltdown. 

It was a fairly unspectacular meltdown as far as meltdowns go. I howled in my car until I stopped. Dried my tears, drove to the Casa del Ursus not five minutes away and burst into tears on their doorstep. I was given a massive hug, a cup of tea and driven to the hospital.

The thing is, it wasn't just me. There were about twenty other cars filled with desperate people negotiating the obstacle race that the hospital car park turns into at visiting time. People park on double yellows, on curbs, anywhere they can find. And then Jeremy, you know what happens? Some dude goes around with a wad of paper advising people not to park there! 

I wonder if you've ever experienced the kind of frustration I felt on Tuesday afternoon? Knowing if you don't hold it together, someone also having a pretty shitty day would be on the receiving end of a disproportionate reaction that might just require physical restraint? 

You see Jeremy, things are kind of "interesting" with Dave's treatment. The Saga of the Blue Bedding turned a bit nasty. Dave wasn't allergic to the laundry detergent or even to the blue dye. Dave is allergic to one of the drugs he needs to prolong his life. The nurse called the doctor when we went in for his Day 15 top up, and the doctor withheld the treatment, Dave's rash was so spectacular. When the oncologist had a look at it, he changed the treatment regime. If Dave's body reacted like that after two doses, it would continue to ramp up the heat. Let me tell you, I have no wish to deal with anaphylactic shock living out here in the wilds of the Norfolk/Suffolk border. Intubating my beloved is not high on my list of the nasty things I'd still like to do with him. 

The oncologist has changed the regime to an older treatment method. This treatment regime consists of four drugs, instead of two. This treatment should be just as effective as the other, it's just no one likes using it because the side effects are guaranteed. It's quite ironic in a way, Dave worked with one of the drugs in the lab, so he knows quite a lot about it. Me, I've gone for wilful ignorance this time around. I don't want to know. We've got puke bowls dotted around the house and in the car. 

It's also meant his immune system is shot to hell. This was true for the previous regime, but with these drugs I've had to give him injections into his stomach over the past five days to help boost his platelets. I've also been cleaning everything like mad. Or as mad as I'm able.

Oh yes, should Dave be allergic to any of these drugs, he'll have to accept the less effective treatment. 

Take a moment with that statement and then perhaps you'll understand why I fell apart in the car park. 

Tuesday was the big hit, overnight stay. He was on the infusion for about 14 hours. Before and after each chemotherapy drug, he had a litre of saline solution put through. As he was on the ward, I was allowed to stay until 8 pm. Which is just as well, there was a gin & tonic and a bed waiting for me at the Casa del Ursus and I wouldn't have coped being on the ward for much longer.

Did I tell you I've worked for Local Government? That I've seen the sneaky tricks pulled by top level management to undermine a service or project? That it's so effective I've also seen it in action in the Art College I attended for my Creative Writing degree?

First off, remove some of the funding needed to deliver a service. It's only a cost saving exercise. What happens is the people delivering the service work much harder to keep up standards. Then you keep removing the funding so they work longer hours, get tired and start making mistakes because they are stressed and tired. You hire an overpaid consultant to tell you some old bullshit about the right way the job should be done because standards are starting to slip. Then you make out it's people doing the job's fault and reprimand them, put them on special measures and then either you break them or they leave, broken. Of course the real knife in the back with a quick twist, is the fact that they feel it's their fault! They are made to feel that if only they were more competent, stronger or actually just more robust they could have made it. 

You Machiavellian shit.

You are playing with people's lives and their deaths. 

In the bed next to Dave was a man who was clearly not long for this world. The cancer had eaten away at him until it wasn't possible to guess his age. He was alone, in pain and confused. While I was there, whenever he was awake he called for help. The nurses came to him when they could, but he was so confused he couldn't tell them what was wrong. 

In the morning, when I came back he was gone. No, I didn't ask the nurses what happened. I didn't know his name, he was of no relation to me and actually, there wasn't anything I could do. It would be easy to say the nurses should have sat with him, talked to him even though he was drifting, but how could they? They didn't have time. They weren't just looking after him, they were also looking after seven other men in the block of the ward, including Dave, not to mention the other patients in the other sections. There just aren't enough nurses on the wards. 

When are you going to recognise that health care also means end of life care and that needs time and commitment? You can't say to me that I don't know what I'm talking about because I do. No one should spend their last days/hours on this earth calling for help because they are in pain and scared. 

You absolute absolute bastard.

Don't give me some bullshit that there isn't the money. Because I don't believe you. If this government can spend the billions blasting Syria back into medieval times, then you can bloody well find the money to pay for someone to go and sit and comfort our dying. 

Dear Jeremy, you might think that this Machiavellian game is going to leave you untouched, but here's this universal truth for you: you are also going to die. This isn't a veiled threat from me to your person. This is statement of fact. All of the money you will earn in your lifetime, all of the hours you spend in the gym, all of the cakes and treats you refuse over the years; nothing will prevent your eventual death. Illness, genetics, accident or old age, death comes for us all. It is the great social and economic equaliser and nothing will protect you from it.

Knowing that you and this government dismantled and sold off the NHS, who will want sit at your bedside and comfort you? 

16 comments:

  1. You're absolutely right, Jeremy Hunt and the Tories are doing their best to wreck the NHS and then "save" it by selling it off to the highest bidder.

    Sorry to hear of Dave's ongoing chemo ordeal. I hope the medics can come up with a permutation he can handle more easily.

    ReplyDelete
    Replies
    1. It truly is appalling what they're doing.

      Thank you. We are being hanging on in there. Fingers crossed all round eh?

      Delete
  2. I cried reading this!

    ReplyDelete
    Replies
    1. Aww...honey.

      Massive hugs to you darling.

      xx

      Delete
  3. I can't add to this. But, should I meet Mr Hunt on the street, I, too, would remind him of that universal truth.
    Hugs.

    ReplyDelete
    Replies
    1. Good woman.

      Warm hugs to you too honey.

      xxx

      Delete
  4. Damn. Allergic to a chemo drug. Damn.

    And I can't really add anything either, except that if I happen to meet Mr. Hunt on the street, I may go all Viking on him so that he can experience the services of the NHS first hand. He's a bastard.

    Huge love and warm hugs to you both. xoxoxo

    ReplyDelete
    Replies
    1. Yeah, I know right. Sucks. Sucks big time.

      I keep thinking we should buy lottery tickets, there's got to be some good luck in and amongst somewhere.

      Lots of love to you darling. xxx

      Delete
  5. Continuing to send very best wishes to you both.

    ReplyDelete
    Replies
    1. Thanks honey.

      You are so much more appreciated than I have words.

      xxxx

      Delete
  6. Thank you for continuing to care for the plight of all patients & their loved ones as you experience this very hardship in this difficult time. You have a big heart & so much love & passion & this world is made all the better for it.

    I keep you & Dave & your loved ones in my thoughts. I wish you all much strength, love, & good health.

    ReplyDelete
    Replies
    1. Well, it's not just about me, is it? It's about all of us. I'm so tired of the divisive politics of fear. Unfortunately, all I can do at the moment is blog about it. Hopefully, one day I'll be able to get trained up and really help.

      Thank you for your kind thoughts and wishes. It means everything. xx

      Delete
  7. Anonymous8:02 pm

    I do not do this very often, but let me hug you dear.

    ReplyDelete
    Replies
    1. Aww...thanks for the hugs. Very much appreciated.
      xx

      Delete
  8. Such a shame his name is Jeremy and not Mark. Mark would have been so much more in keeping.
    Hugs to you, my lovely.
    Sxxx

    ReplyDelete
    Replies
    1. Indeed.

      Thank you for the hugs...I feel all hugged up now!
      xxx

      Delete

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