Tuesday, June 07, 2016

It's June? Really? How?

Darlings, I'm sorry. I've neglected you dreadfully. It's just been a bit of a tough time and social media seems filled with enough doom and gloom without me adding to it.

This cycle of chemotherapy has knocked Dave sideways and as a result, me as well.

We are doing fine, all things considering. Dave is fricking amazing the way he continues to cope with the chemo and the side effects, as well as me worrying and fussing. The last two cycles are in sight. Yes, there will be the radiation therapy...but we are counting down the sessions now.

The weather this Spring has been diabolical. Truly vile. To the point where quite frankly, I was considering putting my heating back on. And then suddenly, on Saturday...after 10 days of cold, damp and grey...there was sunshine!

Dave's sister and niece came up over the weekend and brought with them loads of warmth and enthusiasm. Just what the doctor ordered. They got me in the garden; got me digging and thinking and planning. When they left Sunday lunchtime, I continued. 

It turns out all my hard work last Autumn with the chickens digging out the roots of the perennial weeds wasn't wasted. Although I haven't eradicated the ground elder and nettles and they've sprung up again with great enthusiasm, they haven't got quite the hold that they've previously enjoyed. 

Z gave me some lovely plants for my birthday. I'd been scratching my head wondering where even to begin. Dave's sister pointed me in the right direction, got them all in and looking fabulous and I've carried on ever since. Following her good advice, I've broken down the gardening into mini-projects and I've been focusing on one area at a time. 

My scatter gun approach wasn't really making a visible dent in things (even though it was) and now after roughly four days work, I can really see the difference. There was a pond, and while it could have been again (or a bog garden) I decided to keep the structure and create an homage instead. We'll pop in little alpines in rocky crevices and it should be quite fun.

Scrabble and Polly are in their second broody week. I'm getting a bit bored of them hanging out in the greenhouse now. It's put Canasta right off laying there and I'm having to chase around after her to make sure I find her laying places. She's also quite lonely wandering around by herself. Jenga...well...he's swanning around making loads of noise as usual. No change there.

Have some pix darlings.

 Look at my magnificent cock! Isn't Jenga gorgeous?
 My birthday plants from Z (except the oriental poppy that gatecrashed the party) 
 The Pond Homage
 From another angle
Teeny Tiny Very Smelly Roses

Saturday, May 07, 2016

From Chickens to Gardening, via Bullocks

It's been a bit weird and crazy and nuts round here for a variety of reasons that will ensue further on. To bring you up to date as quickly as possible, I've decided to bullet things. 

Polly wondering when Canasta would stop being such a dick
  • Well, it's been a bit fun around here. Canasta decided to go broody and determinedly sat in the greenhouse outside my kitchen door.
  • Broody hens are grumpy-as-fuck hens. 
  • Polly thought it looked like fun and tried it out for a few days. But then she realised it was not very much fun at all and went back to normal.
  • Jenga played fast and loose with two of Z's pullets to the point that they were escaping from her coop to go play with him.
  • He became a very wilful cock and began refusing to come home at night. 
  • I caught one of the hens trying to be broody and immediately popped her and Jenga in my coop.
  • They were as happy as anything until Scrabble and Polly realised what was going on.
  • I returned the little hen suitably chastened and kept Jenga in for a week or so.
  • He has behaved since.
  • Canasta eventually got bored sitting on a clay egg and is now back to normal.
  • My little flock is happy again.
Canasta wondering why she can't be left alone

  • Well, bullocks actually.
  • While Z was away, a very nice man brought seven of them to over-summer on the Ups & Downs field.
  • Which was fine, except bullocks aren't cows (yes, I know. I'll explain. Give me a minute).
  • The cows last year were quite content to mooch around the field, eat grass and sunbathe.
  • Not so these young lads.
  • Within days they sabotaged their drinking tank and started playing with plastic pots stacked on the other side of the fence of the kitchen garden.
  • They liked to play "It" with the cats and chickens. The chickens and cats didn't find it as much fun.
  • The little buggers tried to eat the roof of the chicken coop with a mum and her youngsters. The tin with the chicken food was always covered with bullock spit every time I went to feed them.
  • When Z got back she moved the coop, sorted out the water trough and generally got the youngsters to behave (because she brooks no shit from no one, no matter how much bigger they are)
  • A couple of weeks ago, she came through slightly apologetic saying one of the bullocks escaped and was currently standing on the drive.
  • It took three of us to get the damned thing back.
  • It escaped again within 10 minutes of being put back.
  • While we waited for the dairy farmer to send a man to fix the fence, as I sat there watching it, it tried three times to get out. Little bugger.
  • Herding chickens was good practice for herding cattle. The only difference was the bullock was bigger and had more legs. Seriously. No difference. Attitude problems. 
  • Pamela (who is totally lovely and awesome) sent Dave a pressie, all the way from Winnipeg, Canada. A blankie in his favourite colours.
  • He loves it to bits and for days wouldn't even let Rummy share.
  • The chemo is beginning to bite and Dave is getting more easily fatigued these days.
  • Thankfully, we are nearly at mid-point. 
  • When Z was away with LT (Lovely Tim, her SO if you don't visit her blog), I looked after the menagerie, including Eloise the cat.
  • I've given up shutting the doors between our respective abodes.
  • Eloise likes to come and visit. She says she comes around because there's never any food at hers. We know that's major fibs, but she's now got her own bowl here.
  • She will come round and will greet Rummy with a nose sniff, closely followed by a thump and then there's Ball of Cats rolling around the floor.
  • Rummy gives as good as he gets.
  • They chase each other around the garden like mad things.
  • Rummy will often go visit Z and LT in the evenings.
  • It's very sociable around here.
  • After Canasta stopped being broody, Scrabble decided she didn't want to lay in the greenhouse anymore.
  • I knew she was laying away, but hadn't got it together enough to follow her.
  • Dave found she was laying in some nettles (always the bloody nettles) on the other side of my fence.
  • That was fine. I took the eggs away and put one of the clay eggs there, so she'd keep laying in the same place.
  • Unfortunately, I forgot to tell Z's gardener not to mow over that spot.
  • When Scrabble discovered she couldn't lay in secret there anymore she was very put out.
  • She spent the afternoon looking for places to lay.
  • Dave and I were having a cup of tea at the dinning table when we glanced up and there she stood in the living room, on my carpet. She'd come in through the front door.
  • As gently as possible I shooed her out (I didn't want her to crap on the floor in protest).
  • A little while later on, I come up to Dave who is still sitting at the table. "There's a chicken on the kitchen counter," he says. I look and see my chicken mug on the kitchen counter. "OMG the chemo has rotted your brain," says I in my usual caring fashion (call me Florence). "No, not the chicken mug" he says slightly annoyed. "Chicken on the counter!" There's a little burble, I go to investigate and sure enough, there's Scrabble.
  • Z pointed out I could have got a large pan out for her. It would have been efficient. 
  • This is why I love Z so much.
  • I'm painting again. It's brilliant (no, not my painting - that sucks) being able to be creative again.
  • I am now okay with the fact that it will take many years for me to suck less at my art. 
  • Dave bought me a proper painter's smock to go over my clothes. He doesn't want me to use his jumpers any more. Fair enough.
  • I realised that the sketching easel I was using wasn't robust enough. Dave brought me a studio easel as a birthday present (because he is awesome).
  • The great thing about working with oil paints is I can put down my palette (okay, plastic plate) and brush and walk off when I've had enough. It also means I can pick them up again just as easily. 
  • Dave came through and saw me painting in my onesie, covered by the smock. He thought it was really funny (I don't see it myself. He has a strange sense of humour). 
The Meaning of Life
  • I am pursuing my training in Core Process Psychotherapy.
  • I went down to Devon for the first in two weekends of foundation training.
  • It was bloody brilliant.
  • So much so, I've applied to do the MA.
  • I will need to complete the foundation training and attend an interview.
  • Please keep everything crossed that the Powers that Be look upon my application favourably.
  • It will be a few weeks before I know (I have to have the interview before they offer me a place).
  • It will be a huge commitment in time and money, but one that will be worth it.
  • It seems this is the week of British summer. 
  • I've already carted three barrow-fuls of nettles and other weeds out of my garden and it doesn't look any different. 
  • At least my work of last autumn was worth it. The nettles are coming out a lot easier this time round. 
  • It also helps that my beloved bought for me a pair of leather gauntlets that the nettles can't sting though to get my hands and wrists. 
  • Unfortunately, I still got stung on my legs as I moved a bundle of the damned weeds around my body. Bastards. 

Apart from my still ranting about the state of hospital parking, we are still here, breathing in and out regularly and happily. Much love darlings.

Friday, April 22, 2016

Dear Jeremy Hunt - The Difference a Week Makes

I'm sorry I haven't posted here regularly Jeremy, I'm sure you've been wondering where I got to. Last week, for the first time since December, Dave and I had some good news. Last Friday, we went to see Dave's Impossibly Elegant Oncologist. 

Have I told you about Dave's oncologist? He was the first one to give it to us straight. No hedging, no soft words. Bad news, delivered gently. You have no idea how much I adore this man. He is gentle, straightforward and has a very cheeky sense of humour. We trust him. He is also the first consultant I have ever seen borrow a pen from a nurse and go out of his way to return it! Jeremy, would you ever return an underling's pen? Their normal, note-taking biro? I've had to rifle through my manager's desk many-a-time to retrieve my pens that they'd absent-mindedly picked up when hovering over me and walked off with. You have no idea how much that used to piss me off. 

Anyway, Dave's Impossibly Elegant Oncologist asked how he was coping with the treatments and then gave us the results of the CT scan. The primary tumour has shrunk from 20mm to 5mm, the secondary tumours on the lymph nodes can't be seen! 

This Jeremy means that the treatment is working. As Dave goes through Cycle 3 and the cumulative effects start to grip, this news makes it all worthwhile. 

This means that perhaps we can have Christmas dinner this year without fear.

It may mean a few more birthdays to celebrate.

This is the gift of time. 

We don't know how long and I can't think of that yet, but it means Dave will be cooking a turkey dinner for us and I will eat every morsel with gratitude. 

Jeremy you seem to have painted yourself into a bit of a corner. It seems you have no right to impose such an unfair, unethical and unsafe contract on the Junior Doctors. You my man, are on very shaky political ground. The legal challenge to this contract is going ahead and has a huge amount of support from the BMA and the public. I think it's beginning to dawn on you that you've been a complete and utter cockwomble (damn, I love that) and because of your antagonist rhetoric, you haven't left yourself a way out of this mess. You are going to have to accept you won't save face and it's your own doing. I am going to try hard to feel sympathy for you, but I think I'm not that good a person. 

You have ground down good people for your own political means. Good people whose daily working lives provide enough of a grind.

Dave's treatment had to be postponed. We got to the ward on time. Dave had his kidney function test, but the oncologist and the nursing staff had to deal with a difficult patient who was kicking off and was kicking off in such a spectacular fashion and created so much drama, that the test results and treatment could not be reviewed before the end of shift. 

The oncology ward is staffed by specialist doctors and they work twelve hour shifts. The night shift has specialist nurses on hand to administer the chemotherapy over night, but given Dave's reaction to the first regime, they wanted a doctor on hand, in case anything untoward happened. This meant Dave was there for 72 hours, rather than 24. 

Have you ever been bullied? The behaviour of the patient, kicking off was truly appalling. He was a man who was accustomed to having his own way. Life it seemed, revolved around him and he wasn't going to have some youngster tell him otherwise. The doctor who dealt with the patient, was polite and firm. At no point did he rise to the veiled insults and threats. He remained calm and professional throughout. And this wasn't just a one-off, five minute confrontation. This drama played out over the afternoon and early evening. I wanted to hug that doctor, I really did. His concern throughout, no matter what that awful man said, remained with the patient's best interests. The nursing staff did what they could to de-escalate the situation, but he was having none of it. Eventually, the situation was resolved, but time had disappeared, wasted on needless drama.

That's what this fight with the Junior Doctors has been Jeremy, needless drama. As a politician you've shown yourself to be incompetent. Smarter politicians would know you catch more bees with sugar, than with vinegar.. Instead of working with, you've worked against and history will forget you as just another rabble rouser who was faced down with professionalism that has the welfare of the NHS on their side. 

Tuesday, April 05, 2016

Dear Jeremy Hunt - Service Users

Is that what we are these days? It seems we're no longer patients. Your language is all hip, management speak, about accessing a service that's designed for us users. Well, here's the thing, successful entrepreneur Sir Richard Branson (you might have heard about him), is credited with saying "look after your staff well and they in turn, look after your customers." 

These two NHS customers service users are currently a little bit knackered. Me, because 3 o'clock in the morning is prime worrying time, and Dave....well Dave because he's going through the new treatment regime and yes, it's as hard as he was warned. Scan tomorrow morning to see how everything is going and I think it's more important for our morale, than for the actual clinical information. We are living from treatment to treatment and trying to anticipate good and down periods where we can do stuff. Fun stuff. 

Spring has sprung and it's truly beautiful here. Living in this part of the world uplifts my spirits in ways you can't imagine. The chickens are a constant source of amusement and exasperation. Jenga, my rooster is doing his absolute best to add two of Z's flock to his own and they are desperate for this to be so. His problem is that the coop we've got is too small. I might be able to squeeze one extra in, but two is a step too far. I will have to disappoint them.

I'm still doing my best to keep a clean and tidy house. I had a bit of a lurgy issue that had me ringing my new GP for advice. Technically, Dave is the patient. I'm down on record as his carer, but that's because as his non-domiciled significant other, it gets a bit awkward as far as patient confidentiality and treatment is concerned. My surgery has bent their rules into a pretzel to enable both Dave and myself to have as much support as they are able to provide.

I knew towards the end of last week I was cooking a low-grade sinus infection. Normally, I'd just take to my couch with a massive mug of tea, knock back the over-the-counter drugs and wait until it buggers off. However, two things. One, as I'm looking after things, I can't be out of commission for the three weeks it normally takes my sinus infections to resolve or deteriorate and two, Dave's immune system is getting the shit kicked out of it. I was worried that he'd get this and it would strike him down in an Old Testament stylee.

Like all good and sensible people, I rang my GP. My new surgery is desperately short of GPs. They are now running a system whereby they triage calls and a GP or nurse will call you back with advice, or invite you in if necessary. Why are they short of GPs Jeremy? Well, they've had a doctor retire and a couple go on maternity leave and it seems locums are hard to come by. Why is that Jeremy? No really, why do you think that is? 

My new GP called me back within half an hour. I explained the situation to her and she issued me with a prescription for antibiotics in case I got worse. She trusted me to work with my body and my health. She also reassured that having this wouldn't put Dave at risk, just not to get too close and be sensible. She made it clear that I could call back if I had any worries at any time. Happily, my sinuses are playing nice and everything seems to be clearing up fairly rapidly. The ABs are here just in case. 

This brings me to the main point of my letter today. I'm not the one with cancer. I'm not the one going through chemotherapy. But every time I've gone in with Dave, I've been warmly greeted. My questions and concerns are considered and answered. I am looked after as well as Dave. I'm not the service user, not the customer. I'm treated like a person, whose wellbeing is taken into consideration. Not just the addition or carer of Dave.

I wish you could see the Oncology Unit in the way I do. The nurses greet their patients with warmth and smiles. Today, I saw some of them greet their long-term service users with hugs and genuine affection. Tea and biscuits are offered by volunteers before the serious business happens. Have you ever tried to get a cannula in? Not as much fun as you'd think. After awhile veins become scarred and it gets harder and more painful. Oh yes, the nurses can't ever go "that'll do" with chemotherapy drugs. Nasty things happen. You're the Minister for Health - look it up. 

Today, I amused the nurse while she tried to get the cannula in, by trying to pronounce the drug names, even after her patient schooling I still couldn't do it. My Caribbean heritage has me putting emphasises in the wrong syllables and it comes out horribly wrong. I don't think I have a career in the medical profession waiting for me because of it. 

But I think of those who are able to pronounce those disease names, the drugs needed to save the lives of the service users and are able to give a little of themselves to make the experience bearable. Jeremy, I implore you. 

I need these people. All of them. From the auxiliary to the staff nurse, from the heavily pregnant junior doctor and her ridiculously young colleagues all of whom look like they should be drinking Diamond White behind the Sixth Form College. I need the oncologist to be on best form, the GP to be able to hear me when I need reassurance. I need them, because I need Dave. I need him to be well. My happiness depends on this. I'm not ready to give Dave up to the cancer yet. It's the NHS that will do this for me as long as you leave it well enough alone and let the service providers to their jobs, their best and their most, for us service users.

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.

Thursday, February 25, 2016

Dear Jeremy - the rhythm of a hospital

We are hanging in there, thanks for asking. I thought you might find it useful to see how actual users of the NHS find it, given that your experience of the NHS is through reports and spreadsheets rather than as an actual patient/family member.

Tuesday was Dave's first chemotherapy treatment.

As I walked around the hospital (the restaurant was in a different block than the oncology wards and I walked loads on Tuesday) it occurred to me that when you visit a hospital it's probably a bit of three-ringed circus. You and the Queen probably think hospitals smell of new paint and pine-scented disinfectant. When you go for your carefully controlled walk around, you are surrounded by a retinue that is ready to step in between you and something unpleasant that may come walking around the corner. You see a hospital at an arranged time, when corridors can be cleared of the riff raff. It's all a bit safe, isn't it Jeremy?

I am beginning to see the tides of the Norfolk & Norwich University Hospital and let me tell you, they doen't smell of paint or pine-scented disinfectant. 

The N&NUH smells of food, hope and despair.

When I walked along the corridors patients, family members and staff all made eye contact with me. Some smiled, others stretched their lips in an attempt at one. But as we all moved through this microcosm, we all knew and acknowledged that our reasons for being there were likely to be painful ones. 

In the restaurant, I always have to stop the catering staff from loading up my plate. They smile and try and heap on more food. It's ridiculous, it's not like I'm wasting away. But they know that food helps. The food in the main restaurant isn't too bad surprisingly. They've got a good selection with comforting additions: crumbles, sponge puddings, lumpy custard - food to stick to your aching ribs. Food to soothe ragged souls. 

Dave and I hate the coffee, but then we would. We drink a lot of tea there instead.

On one of the first visits Dave and I made to the canteen together, there was a guy who gave Zero Fucks. He had a dressing gown wrapped loosely around his emaciated body and walked with a drip. His pyjamas did not do a good enough job of covering the bags attached to various parts of his torso, or the murky coloured fluids they contained. At first, I was shocked. How could he display his physical degradation, pain and impending demise this way? And as I drank my tea and he ate his meal with one of his family members, I came to have a great deal of respect and admiration for him. After a while he finished his meal and moved off. Dave went off to use the facilities and when I glanced outside, this brave man was having a cigarette in the car park with his family member. Good on him. 

Zero Fucks to give. 

So it should be. This is what Life is really like for the patients who inhabit the weird world of the hospital. Life, dying and death aren't a pretty experience, there's lots of bodily fluids, vile smells and as much as we try and pretend otherwise, it's going to happen to all of us. All of us. Even you Jeremy. 

I met one of the Junior Doctors you are so determined to demonise. Oh, and a handful of those horrible nurses you try to chase away. They were all efficient, personable and tired; and so very, very kind. We were there for three shift changes. Or at least Dave was. I eventually, perked up the courage to ask the staff nurse at about 8 pm, when I was going to be chucked out. He shook his head. He gave me permission to stay as long as I liked; overnight, if I wanted. I couldn't. I'm too old and creaky to pretzel myself into the comfy chair in the corner. But that kindness took the pressure off the anxiety of knowing I'd have to leave Dave attached to the poisons that would hopefully buy us more time.

Walking back to the car, I wasn't walking the corridors alone. There were doctors, nurses and other staff hustling through, going about their business. I recognised faces from the canteen, they'd been here when I first arrived over twelve hours ago. They moved with the same energy and purpose. I don't know how they do that. The days of me pulling an all-nighter are long gone. Yet, they were still going strong. 

If you don't mind this suggestion, ditch your retinue, don a disguise and go and sit in a hospital canteen for a day and night. Experience the rhythms and heartbeat of a hospital for yourself, not as a distinguished guest, but as a participant. It'll change the way you think about the NHS, I promise you.