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? 

Saturday, March 05, 2016

The Saga of the Blue Bedding - or how I made Dave blue

If you haven't been following this Saga on that other social media site (as Savannah calls it), you will have missed the latest drama from the wilds of the Norfolk/Suffolk border.

One of the things you might not know, or perhaps may not have taken much notice of, is that during chemotherapy, a patient's immune system is shot to shit (that's a medical term, can you keep up?). This means that even the most ordinary germs can take root and be incredibly debilitating, if not dangerous to the patient. 

You may already be aware that I am not the most avid of housekeepers. In fact, I'd go so far as to say my housekeeping happens on an As & When basis (As the mood takes me, When I feel like it). It's not an exaggeration if I say, hoovering over the autumn happened when Boy did it before he left for university and after two months just before he visited. It's not that the house is dirty, per se, it's tidy enough...you just wouldn't want to quote the two second rule in my kitchen.

All of that has gone by the by. As soon as I knew Dave was coming to stay during his treatment, I bought new, different coloured hand and bath towels. I also thought having some new, less girly bedding would be useful, especially since I knew I'd be changing the bed at least once a week. I had a look around and realised that even on sale, good bedding is quite expensive. Amazon to the rescue. I found two really nice patterns and with the fitted sheets and extra pillowcases, were a third of the price of one set of good bedding. Yeah...

The bedding arrived and I put it on. Dave saw it and said "cool, guy bedding." Then turned out the lights. 
Obviously, it was never going to be the same experience as 300 thread count cotton. It was rough as fuck. In the morning, Dave asked if I wouldn't mind washing the bedding to try to soften it up. This I duly did. Happily, it was less scratchy even if it wasn't soft. 

Tuesday, we went into Norwich before his top-up chemotherapy treatment to pick up a few bits and pieces. We called into Strangers Roastery, when it was pointed out that Dave had blue hair! (I hang my head in shame that I didn't even notice) It wasn't just a little bit blue either. It was a proper blue rinse. Not only was his hair blue, his skin was too. When he had a bath...well...he left a thick blue tidemark. 
Horrified, I  wailed at Z, who promptly leant me two sets of her bedding. For the third day in a row, I stripped and re-made the damned bed. The first night was bliss, the second night after, Dave started scratching. And scratching. In my zeal to get him out of the blue bedding, I didn't stop to think about the fact that Z uses different laundry detergent. Dave can only tolerate a few brands and I had to change mine to his. 

Once again, I stripped the bed and changed the damned sheets, this time to mine. Unfortunately, Dave's rash didn't improve. He was certainly more comfortable, but the rash continued to spread and to itch.

In the meantime, I contacted the purveyor of said blue bedding and complained. They responded straight away by saying they would take back and refund the unopened bedding. They would not refund the blue bedding, oh and no one else had complained about the dye leaking; so there.

Well. Who told them to do that?

You see, I took pictures of Dave's blue rinse and Facebook was all a-buzz with his new look. Quite ridiculous, because I'm the one who wanted blue hair in the first place. Anyway, I responded by sending the picture of the blue rinse and pointed out the bedding was not fit for purpose. Yes, I was made aware (by Pamela) that I could soak the bedding in cold salted water before washing to fix the dye, but frankly I don't have the time, or inclination for that shit. I really don't. After a good 18 hours, the purveyor of the blue bedding came back and said they would give me a full refund, including the cost of returning the unopened bedding. Oh yes, I could keep the blue bedding. It seems I am destined to be stuck with that damn set.

The drugs used in chemotherapy are some of the most poisonous substances known to man (woman and children). As well as the six-sides of A4 paper outlining the side effects, there are a few conditions we were warned that if happened, we were to ring the Acute Oncology Service hotline at once. Do not delay. Do not pass Go, do not collect £200. And rash was one of them. In fairly big letters.

A rash could potentially be a sign that a chemotherapy-related sepsis could be taking root. And as is the case with meningitis, every minute between spotting the rash (see what I did there?) and getting hooked up to hard-core antibiotics, counts. Given Dave wasn't running a fever, we were concerned rather than worried.

As it's impossible to diagnose over the phone, the on-call doctor asked Dave to pop in. Up to Norwich we toddle where the doctor, taking into account Dave's sensitivity to detergents, felt that a good dose of Piriton (anti-histamine) over the weekend would see him right. If it gets worse, we are to hot-foot it back, but the doctor would re-assess the situation on Tuesday, before Dave's D-15 top up.

Needless to say, this has been a little bit of an adventure we could have done without. We had plans for the weekend that have disappeared in a Piriton-induced coma...it makes Dave incredibly sleepy...and well, the added excitement has wiped me out. Chickens are as much as I can deal with right now.