Moorgate meanderings

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Today my best friend is Nat; kind, friendly and professional, she’s one of the Moorgate HCAs. She runs around after me, and several others, and chats as she goes. Nothing is too much trouble, too silly. We end up having an in-depth conversation about cancer; Nat’s perspective is one more that adds to all of these chance encounters with people I might never see again add a little bit more to my worldview and my ability to adjust to the fact that only a month ago I still believed I was physically strong and in some kind of control…but that’s simply no longer the case.

When politicians criticise the lack of compassion and vocation in NHS staff, when they pontificate about how to bring it back by making nurses less professionally qualified and giving them lessons in bedside manner or whatever Victorian phrase of the day they’ve decided to impose, I have an overwhelming urge to lob a truck load of used bedpans into the commons. Yes, there are people in every walk of life who lack compassion, empathy and the ability to interact on a human level with anyone. A fair few of those can be found supping subsidised drinks in Westminster, and there are of course some in the NHS. I had colleagues whose attitude left a lot to be desired – but they were few and far between. People don’t do the jobs we do for money. They do them because they like people, are interested in them, care about them. In addition to that, Florence Nightingale would struggle with the ability to manage the clinical picture of multiple patients with complex conditions on a neurological and neurosurgery ward without the professional training and experience that role now requires. Our un-esteemed Secretary of State for Health recently used the term ‘ambulance driver’ instead of ‘paramedic’, which belittles and displays such ignorance of the complexity and skill of the work that NHS staff do.

Forgive the rant at this stage, but I hope you can see from what follows that this is necessary. The ridiculous assumptions made by our political masters (and yes, they are mostly men in case you hadn’t noticed) and their judgements on the rest of us owe nothing to evidence. They’re meant to become tabloid headlines, to bully and blame. They’re aimed at covering up the waste and expensive results of their own short-term cost-cutting approach. Their policy fiascos and convoluted management systems aim for something called efficiency while they dump financial and human costs elsewhere and destroy the human beings who are providing a value in the kinds of terms they know nothing of. Is it the predominance of representatives from the public school system in our political establishment that causes this? Children sent off by their parents to dens of bullying at 8 and brought up to survive in the colonies? People who’ve suffered and survived, and truly believe as IDS argued that they’re helping us to pull ourselves up by our bootstraps by being cruel and removing money and support to those who already have very little?

Back to Moorgate. Opposite me is a person who’s been in this area of the hospital for a prolonged period, through the system of intensive treatment, high dependency and this bay. She’s moving on to rehab today, and there’s a constant stream of visits from various hospital professionals who’ve come to say goodbye. There are hugs, stories, many of the staff are close to tears. It’s a privilege to be lying here, back in the immersive theatre of this big hospital; but it’s also quite uncomfortable to be an accidental witness to such a momentous day, an intrusion into someone else’s life. That’s because it’s apparent that we’re witnessing a day that most of these people thought would never come. I marvel at the numbers of people involved in this one story of intensive care and the slow beginnings of some recovery; overhear snippets of stories from the staff, the jokes at her Dad’s expense over the rugby. We all wish her luck as she leaves, and a surge of love for this woman I don’t know and her family, and all the staff so delighted to have achieved what is an apparent miracle threatens to overwhelm me; I know too that she will need care, and support, and empathy, and resources, most likely for the rest of her life. Real support. The support that our NHS is still managing to provide – just – under this onslaught of cuts and privatisation.

It’s nice to have the contact and the interest of someone else’s long-term and subtle problems, and fellow patients have some variations on the theme which are incredibly interesting. I’m no expert, but I have encountered a case involving a young girl who would suddenly become hypoglycaemic (low blood sugar) which can lead quickly to unconsciousness and death.The cause turned out to be a pituitary tumour. It’s the mummy gland, the one that runs all the others in the body, and when it goes wrong all kinds of random things happen. So, we forge friendships over curiosity and medical history, and then tales of childhood and life stories, and arrange to meet for lunch in the summer, in Port Gaverne. We collude on jamming the huge windows open, and as I attempt to insert a bed bay book it slips out and falls. We’ve just gained a bed, and now joke about a Moorgate ward book-related traumatic brain injury arriving from downstairs to fill us up again.

One of my fellow patients lives alone, and has asked for a couple of days in one of the community hospitals since she’s feeling nervous about leaving Derriford. The OTs arrive and check her out. There are no beds for her, because of winter pressures. I resist the urge to butt in; the cause of the acute shortage of community hospital beds is government cuts to council budgets of 35% since 2010; prior to that there had also been lesser cuts. The beds have been closed because there is no money to fund them, and we have been lied to about the provision of community care that was supposed to take their place. This is expensive, and so it hasn’t been provided. My new friend becomes increasingly upset by the problem as her time to leave draws close.  Later I email her and she tells me her GP complained to Derriford that she should never have been sent home alone, and that she is now staying with friends. One more small story; one independent woman, vulnerable for a time through no fault of her own (I don’t ask for much, she said), abandoned because someone thinks we’d rather have tax cuts than pay for such vital resources.

I have a visit from Raman, Mr Fewing’s registrar who is lovely and chats about the surgery. Then Mr Fewings himself, like Tigger, manifests by my bed.

Morning young Ropes!

That’s my old RAF nickname. How did he come up with that?

We chat, he’s still 50% GBM 50% metastasis on the tumour. He says I can go home when I feel ready, but not to go unless I’m absolutely sure I feel up to it. I don’t today, but think that tomorrow I will.

It’s brain surgery, yes, but when it goes well it’s fine! If it doesn’t, that’s another matter,  He says. Mine has gone well. He boings off.

Zoe the physiotherapist arrives; I know her from years ago when both of us worked for a kids’ charity called Chicks. We catch up briefly, then she starts to assess me. I’d thought my left-sided proprioception problems had largely resolved with the steroids, but quickly realised they hadn’t. Zoe says I’ve compensated for them, and they are certainly much less severe. She asked me to close my eyes and moved my left hand into various positions which I had to replicate with my right. Again I felt a physical shock looking at what I thought would be a mirror image and finding my right hand doing something so completely different; fingers extended when I’d thought they were flexed, wrist turned the other way. My walking is very odd, and I’m slumped over with my shoulders raised to my ears. People have been commenting about that for many months. So I’m to draw up my core, engage it, and consciously drop my shoulders. It helps. For stairs, I must remember the left sided problems and be conscious that I don’t know what my left hand is actually doing. I feel very weak, but there’s a definite improvement from pulling up and getting the right position.

Another patient arrives on Thursday, who’s had a brain biopsy. She has two scars the length of mine, and a whole head bandage. She’s remarkably resilient and eats only a few hours after her surgery. We both have right parietal tumours, are of a similar vintage, and compare notes. She’s quite overcome to know there’s someone who’s had related experiences, and it is remarkable. Both of us took some time to act – her precipitating event was a seizure.

We talk more about it, then she tells me her tumour is the result of treatment for childhood leukaemia.

From the ages of 7 to 11 she had active leukaemia, at a time when the survival rate was only 14%. So for every hundred children diagnosed, 86 died. The treatment then was crude and I suspect experimental; now things have changed massively and the survival she tells me is around 95%. But back then, they gave her radiotherapy to her whole head. That’s what cured her, she says, and she’s gone on to live her life, to have children. Now it’s biting back, and there’s a huge amount to deal with.

In the night, an elderly man appears in the bed opposite mine. He’s distressed, and wails. He hates the blood pressure cuff, the pulse oximeter clip on his finger. He has a headache. He’s trying to get up but can’t. The emergency alarm goes off and there are stampedes in the corridor as the medical team respond to a cardiac arrest in another bay on the ward.

I’ll have to do something here…about this.

Our wraith man – next to my bed, staring at me. Mark the nurse whisks him away; tonight they couldn’t cover the shift to find a walker for him so he keeps escaping. They’re understaffed as it is.

I get up for a wander at 5.30, and lovely Rachel, another of the HCAs, makes me a cup of tea and gets me some biscuits and a slice of cake. I eat it at the nurses’ station and she tells me how she keeps falling asleep on the bus back to Tavistock and missing her stop after the night shift. I sympathise, remembering my early morning drive back across the moors when I used to work in Newton Abbot; usually I’d get as far as Yar Tor, but once or twice, especially after an overrun on top of the twelve hour shift, I’d be nodding off in a layby on the A38. The eyes go, focus pulls off, you’re powerless. So I’d stop and sleep for ten or twenty minutes, then press on. Sometimes it’d happen four or five times. I’d arrive home wide awake and unable to get to sleep, beyond exhausted.

I feel good today and decide to have a shower. I’ll be discharged this afternoon, by the time my discharge letter and medications have been sorted.

It’s a wet room with a loo by the door and a wide space where the shower sits on an adjustable pole with a flexi hose. I’m happy to see it’s at shoulder height; my head needs to stay dry. So I undress, leave my pyjamas round the corner, and lay my clothes on a rail at the far end from the shower. Then I turn it on.

The spray hits me square in the face as the showerhead rears from the holder, then arcs up and sprays the entire room. It’s lovely to have water on me. But my head is supposed to be dry. I try to grab the shower head and it turns, spraying the side of my head, before I think to turn it off with my wobbly hands. Now I have wet hair, wet pyjamas and wet clothes. Nothing new there then. When I manage to sort it out, the shower is lovely. I’ve wound a towel round my head, and spend some time just standing, letting the water run cool over my body.

The dressing has unstuck, and so the nurse replaces it over damp hair. She offers to take a photo of the scar, which she says looks lovely. That’s the one you see here, with the odd lump of my swollen ear to the left hand side. The scar extends to perhaps 3cm from the top of my head.

Another Tigger boing in from Mr Fewings:

Morning young Ropes!

I’ll be called in the week after next for the histology results; whichever of the two possible outcomes are malignant (it’s definitely not an abcess) and indicate radiotherapy as a beneficial next treatment option. So I know enough to keep me going.

At 4.30, it’s home time. Mum and Dad pick me up, and I manage the walk in two stages. Sausage, the dog formerly known as Bun, is ecstatic as I reach into the car. It’s lovely to know I can cuddle my dog again. We’re having the pesto I made last week for dinner, with spinach tagliatelle. Family, good food, dog. Hunt gone.

 

 

 

 

 

 

 

 

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No Beds

1262504_10151822703488251_1557854932_oThe op date will be confirmed today and I might have 2 more days, or not. All action at home; we’ve moved the room around and there’s a desk space which was a key job to finish.

Honey aka Bun, has been behaving oddly, asking to go out at 1.30am and vanishing for ¾ an hour then lying on the frosty grass. While dogs are acutely sensitive to vibes, she is otherwise secure, has stayed here often since I got her, gets fed sausage and other delicacies (I once arrived to collect her after a run of shifts to hear Mum exclaiming: “Damn! I’ve overcooked Honey’s asparagus!”)  I’m concerned there’s something else going on. We go to the Vet’s and have her anal glands checked, finding that they are indeed full. That’s a relief for her and me.

Wandering up the footpath with my walking pole for security (I negotiated with Mum that I could go out alone provided she knows where I am and I have my phone) I feel horribly weak. I have a fine, internal tremor, one that I’m unsure is physiological. Sub-butterflies perhaps, combined with the general knock off in strength that I’ve been struggling with for several weeks. I ring Kari and as ever we end up laughing and she suggests we go off on a trip to Budapest’s thermal baths, and also Rekjyavik. Maybe in a couple of weeks? I tell her about chatting to my friend yesterday, discussing menopause symptoms. C had listed hers:

“And I think… is there something wrong? No, it’s just the menopause”.

“Or it might be a brain tumour.” I reply and we end up guffawing.

Taking the advice of my Macmillan supporter, I have accepted practical offers of help, and so a friend who’s an IT bod came with his partner and dogs for lunch, bringing fabulous cakes from Exeter including one called Ginger Dick. So voice recognition is now set up on the netbook, and I have extra memory on order to speed up the operation which M will put in next week sometime. We look at transferring all my Mac files from the Macbook, and I list all my passwords and email addresses attached to accounts in a notebook. Another massive relief. It’s as ever, lovely to chat about my stuff and gain another perspective, and also to talk of their lives and our dogs and swimming expeditions.

No call from neurosurgery, so I rang at 4 and was put through to Mr Fewings’ secretary who tells me she will call as soon as she knows, but that there are no beds.  They’re in a meeting now, trying to discharge some people, and there are six of us on the list this week to find beds for (along with emergencies, of course).

The NHS has been dropping beds since 2010 and the start of austerity. We have among the lowest number of beds per head in the developed world. By beds, I mean not just a bed, but also the staff and equipment to man it. This is related to cost, and it’s of course considered inefficient to ever have an unoccupied bed. But a hospital is not a Premier Inn; for the system to operate properly there must be resilience, some flex in the system, so that in addition to the unpredictability of acute illnesses and admissions, there is also the ability to contain people who cannot be discharged when expected.

This latter point is a huge one. Bed blocking is the result of massive cuts to social care budgets since 2010. The extra strain on the NHS makes a mockery of all those claims of ring-fenced budgets which are in any case misleading because there is no contingency for increased usage nor for inflation – Southwestern Ambulance Service’s usage rises 7% annually, and has done for years.

The average loss (devolved to councils so that the government can lay the blame with their budgeting rather than the 35% central cuts to local services) from social care budgets is between 30-35% since the coalition took over in 2010. Incidentally, Tory run councils including my own are receiving bail outs from government to protect some key services, while Labour run councils are not.

If there is no safety net when a vulnerable person (frail elderly being the most likely group to be in this situation) is discharged, then they can’t go home. Elderly people usually do not need to be treated as medical emergencies and it’s not in their interests either. I’ve taken many elderly people back in to hospital in the 24 hours after discharge, because they can’t cope. Local, community hospital beds play a huge role here, because they provide a place of safety where assessment and treatment can take place, in a location where friends and family can easily visit. These people need to be supported, to have their conditions managed, to be loved, not dashed through a system that’s there to try to cure them; there’s no cure for old age.

Community hospital beds are like gold dust, and ambulances are routinely forced take elderly, frail patients (“off legs” is the generic term used, meaning anything from a urine infection, to constipation, to heart failure) into the acute hospital which in this area might be 50 miles away. Often they’re confused, and on an inappropriate ward (surgical, oncology) where they become distressed and wander around. I once arrived on the AMU in the Royal Devon and Exeter to find a bank nurse specially employed for the task walking up and down the bays with a demented elderly woman who was wailing, and screaming that her husband had been killed. The other patients were clearly unwell and upset, as was this poor woman who had been sent in due to “increased confusion” from a residential care home, which clearly could not manage her.

In my area, Moretonhampstead wards were closed not long ago, on the basis that the Okehampton community hospital was ‘underused’. It most certainly would not have been underused had those beds been open – but they wer closed to save money. We could have filled them twice over, but instead all those people were being carted off to Exeter by an ambulance (25 miles rather than a local trip) which is then not available for 999 calls for well over an hour. And Exeter fills up, starts to breach the 4 hour ED targets, blocks at the AMU. Add to that the resultant travel concerns for elderly relatives who have to hike 16 miles by bus to visit patients who might well be end of life.

The justification for closing beds is always some combination of underuse/efficiency and the provision of social care in the community. The latter is often – but not always – a grand idea but it costs a lot of money to set up and run properly, and also requires huge support for carers. Imagine too living with a hospital bed in your sitting room, hoists along the ceiling through the doors to the bathroom.  It’s an ideal, but the impetus is key. Currently care in own homes is used to justify cost-cutting closures, when it’s anything but the cheaper option. The costs are moved elsewhere  (GP, ambulance service, emergency departments, acute medical units). And at the end of the line is someone like me, awaiting urgent surgery, but without a bed. Planned surgery will of course have already been cancelled. This is anything but efficient. It’s a massive waste of costly theatre time and all those massively expert staff who are now waiting around rather than doing their jobs.

So here I am in the wee hours, with no idea whether my op will go ahead this week at all.

Last eve my brother Iggy, sister in law Sarah and nephews Lee and Max arrived along with Lee’s gorgeous partner Louise. It was lovely to see them, though it felt rather like the last supper (with salty snacks rather than supper). I showed them my text from the DWP. Their faces said it all.

Reading over this post it sounds flat, and reflects I think a slight separation I feel from my soul. I’m off to Bantham today because I’ve been doing a job for the Outdoor Swimming Society helping to set up for an advert involving wild swimmers. I’m really going along for the craic, because I’m not up to a whole lot physically or emotionally, but I’m so looking forward to spending a day with the production crew and my friends. I guess in my head I’m floating down the Aune Swoosh, one of our favourite swims, and ahead of me is the estuary rip and the reefs and breakers of Burgh and Bantham. But I’m seeing and feeling it from the drone that filmed this swim last year, swooping overhead and in and out of different parts of the action, unable to quite hear the water, taste the salt or see the fish.

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