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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Compassion

Text message to me from DWP:

“We have received your Employment and Support Allowance claim.

You must send your Fit Note asap  and then we will contact you with our decision by letter”.

Phone call between me and my GP:

“The DWP have asked me for something called a Fit Note.”

“Oh for God’s sake! Poor you, oh really! Malignant neoplasm, how about three months of not being fit and we can go from there?”

Jeremy Hunt, 7 March 2014:

The Secretary of State for Health on the important changes to support staff so they can raise concerns about patient care and safety.

“One year on from Francis, my top priority remains to support you in creating a more patient-centred, compassionate NHS. So this week I have written to all NHS Trusts to reiterate how strongly I feel that staff should be able to raise any concerns about patient care and safety. We have put in place reforms to give you that reassurance, but in light of recent media reports I want it to be absolutely clear that whistleblowers speaking out about poor care should be confident they will be listened to.

To support you in this we have made a number of important changes. We have ensured that all NHS employment contracts include the right to raise concerns about care and amended the NHS Constitution to strengthen the commitment to supporting staff who do so. We are also funding a national helpline – independent from employers and the Department of Health and completely confidential – to provide advice to anyone in health or social care who wants to raise a concern. The number is 08000 724 725. We are also introducing a new duty of candour, so that when things go wrong, organisations have a duty to admit mistakes and tell patients what has happened. The professional regulators will be working together to include a new consistent professional duty of candour in codes of conduct. Together, these changes are intended to support you by building the open culture we need and where you can be confident that you can speak up for the patients in your care.”

Shrivelling prayer

 

I neither do nor get religion.  I have several friends who are church-goers, active worshippers and activitsts I suppose. We have all discussed our thoughts on it, and agreed to disagree.

Friends from my post-grad student Big Pink Farmhouse days, a couple named Tom and Julia, are probably the most religious people I know. For them god is the heart and soul of their lives.

Julia is doing a shrivelling prayer for me to get rid of Hunt. I love that. A shrivelling prayer! I also have another of her favourite prayers heading my way. The image of Hunt shrivelling is so perfect I’m beside myself.

Thank you Julia for your friendship and support, because god or no god, it’s what counts.

 

Roid revs

I was on 8mg of Dexamethasone twice a day till yesterday, when the dose was halved. Steroids a good things when, like me, you have a swollen brain; they’ve eased my headache considerably, and lessened some of the deficits – in particular the dropping and smashing of more or less anything I tried to pick up or carry.

Steroids are produced by your body naturally, and I would sometimes encounter a patient with an insufficiency. Any stress on the body whether from illness, or trauma, or emotion rapidly becomes a medical emergency for these people because steroids are a part of the chain reaction, also involving adrenaline, in your body’s fight or flight response.  It’s the steroid that causes glucose to be released into the blood to fuel the raised heart rate and increased blood flow to the muscles ready for action. If you’re deficient in any part of the chain of hormones in this process, you cannot respond to stress and you die unless you receive steroids artificially.

The effect of steroids then is pretty dramatic I take them at 8am and 1pm and for a couple of hours afterwards I’m wired, but not in a nice way. They’re stress hormones.

My Mum has a little Suzuki Jimny, which lives in her garage at the bottom of a steep driveway. She is very small, and moves like a rocket, hurling herself at everything. I feel like the Jimny revving up on a flight or fight up the driveway.

 

Admin and dogwash

Having managed to negotiate the DWP yesterday, I’m aware that time is running out; I need to organise a host of apparently minor things because I have no idea what state I’ll be in after surgery nor how much that will affect my ability to manage the day to day aspects of life. That’s an area where, while I’m cognitively normal, the small declines and deficits have had a significant effect. With no regular income, my finances are a particular concern, because money has to be earned and then managed on a daily basis. I’m going to ask my brother to take on Airbnb and Paypal for now, so that’s one part of the plan.

I’ve been thinking about TrannyVan who is my VWT5, camper conversion for several days. She’s my pride and joy, and I had plans to add a cupboard and make curtains before the summer. Now, though, I’m not allowed to drive, and it looks likely that this will be the case for at least 2 years if Hunt turns out to be the expected type of tumour. The insurance is due, but I haven’t received a reminder, and at the last look I had £121.42 in my bank account.

One of the more subtle effects of Hunt has been an increasing difficulty in entering passwords and dialling phone numbers accurately. When I broke my Macbook over Christmas, I had assumed that I couldn’t get the passwords to enter because I had the wrong backup for icloud keychain, the place where all those passwords are stored. Frustrating is not the word when I was certain that I had one of three or four variants of a password and yet account after account was locked out. Recovery failed too, because I couldn’t provide the required information of the last password you remember, or the subject of the last emails sent, or addressees of emails; this is not something you can get around, because obviously companies such as google have a duty to try to prevent hacking. I think now that I knew my passwords but had been entering them dyslexically, because this is one of the problems associated with damage to the parietal lobe.

Once you’re locked out of a couple of email accounts tied to online sites and accounts, you receive no notifications from those accounts. Furthermore, when you wrongly enter a password for ebay, Facebook, Twitter or online banking, the code to reset your password is sent to the email account from which you’re locked. This aspect of Hunt has spiralled out of control since December, to the point where I get anxious at the thought of having to provide a password for any online account, wondering whether I can enter it correctly or remember it at all, or whether I changed the linked email to one for which I have access. I have boo boo boo you have dialled an incorrect number please try again as an earworm. That’s another reason it’s taken so long to set up on the replacement laptop following the total demise of Macbook who is now officially beyond economic repair, after the recent Hunt-induced flight across the kitchen two weeks ago.  I’ve yet to start sorting the many documents I need from it purely because I can’t cope with the prospect of trying and getting in a muddle and having no way out.

This morning I called my van insurers, Adrian Flux, who deal in agreed values for campers like mine where the book price of the basic panel van doesn’t meet the value of the conversion. To my horror, the full amount for renewal had been taken from my bank that morning – and the usual emails detailing the quote and so on had gone to an email account to which I’ve no access.

I explained the circumstances, including the part about having insufficient money in the account, wondering how often people phone and make up brain tumours to get out of such messes. They were fantastic. My case was passed on to a manger who organised an immediate, free refund of the premium. I was then passed to a man who discussed the options for laid up cover, took on board the part about my not being able to drive tfn, and then suggested I put another main driver on for 3,000 miles a year which cuts the premium significantly means I’m also covered for the agreed value on Tranny. So I’ll pay in 9 instalments, giving me a chance to get the money, and I can worry later about tarting Tranny up for sale and getting her to the garage and so on for a service. It sounds minor, but the relief is indescribable. I didn’t know what to do, and the anxiety associated with the other things going on in my life simply blocks the ability to sit down and plod methodically through. It’s a kind of panicked stasis.Compare and contrast to the DWP.

IMG_1421Next on the list was to bath Honey, my gorgeous, 37kg woolly, poo-eating, mudlark labradoodle who was frankly, minging. It’s usually a 2 hour job, involving an element of juggling as she makes a few sudden breaks from the bath, and several indoor cloudbursts as she shakes gallons of water across the bathroom. Mum and I managed between us to give her two shampoos and rinse her off. It’s another of those realisations in that while I know I feel weak and slightly off-balance, I hadn’t realised the extent of it; I felt as though I’d just staggered ashore after a currenty 3 mile sea swim in heavy swell.

 

Unsettled with benefits

An odd day yesterday, and it’s unsettled me deeply. Firstly, I had a job interview in the afternoon (at Derriford Hospital, natch – got the call to interview an hour after being diagnosed). I’d decided as you know to stop following those tortuous thought-processes between types and grades of cancer, and to wait and see what kind of chap Hunt actually turns out to be.

After the interview I applied for ESA benefit by phone (I have no income other than via Airbnb and can’t work in my usual jobs which are zero hours), but struggled to know what the call taker was after – I kept having to ask him to repeat the question, and he was Scottish, but since I lived there for around 15 years of my life in total that wouldn’t normally be a problem. I somehow just couldn’t tune in.

We got off on the wrong foot, this though due to a more perennial concern – bare naked sexism.

“Title? Mrs, Miss or Ms”

“Ms”

“Divorced?”

“No”

“Well, you haven’t been married?”

“No” where’s this going?

“So then you can’t be Ms, it’s Mrs or Miss, Ms is for divorced.”

“I can assure you I’ve been Ms all my adult life, it’s most certainly Ms”.

“Ah, yes, well you can call yourself what you like, but this form is legal so it has to be right.”

I manage not to say listen here young man.. “Okay, I’m a feminist, and I use the title Ms because I see no reason why I should be identified by my marital status when the same doesn’t apply to men.”

“If you like, but you’re not divorced! If I put that here and it’s wrong, legally, then your benefit might be delayed.”

“I’m Ms, it’s on everything I have; I am and will remain, Ms!”

“Okay, I’ll do what you say, but it should be Miss if you’re not divorced.”

Whatever

Then we fall up on the advice I’ve received from the Macmillan benefits advisor who was incredibly helpful so I knew what I was entitled to. Essentially, I know I’m not entitled to one of the benefits and was advised to go for ESA, the NI based one.

“The Macmillan they’re nice, yeah, but they are NOT BENEFITS TRAINED!”

“Okay, just write what you think then”. I need a cuppa.

“But I’ll have to ask you the questions, they might sound a bit weird, right, but just a wee yes or no for these.”

And so it went on. How much of the comms fail here was to do with my mental state, how much with Hunt and how much the elision of the DWP culture and an employee with a somewhat antideluvian approach to gender?

All this for £74 a week, a safety net aka pittance on which I have no hope of making ends meet and which I am claiming by dint of having made regular National Insurance payments to the government over decades. He ends with a long and rambling official declaration which includes details of future work assessments for which I will have to attend appointments and also provide a ‘Fit Note’. Ha! That’s really the point isn’t it? This system has been constructed to make me look and feel like a shirker, a fit fake scrounging off the rest of you hard-working families. It’s a fucking travesty. Throughout most of this interview an image of Iain Duncan Smith’s fat, shiny face with 37 quid’s worth of breakfast on expenses dribbling down his chin is lodged in my brain. Incompetent, patronising, spawn of the devil.

Then as if by magic a gorgeous box of iced flower chocolate biscuits arrived from one of my swimming friends. Take that IDS. I know kind and loving people. But what if I didn’t?

So, Mum and I went to the cottage to light the wood burner and finish cleaning for the incoming guests, via Tavistock, where I bought some senna tea and prunes, because the roids are blocking my bottom. I must not, according to my brain tumour surgery guidebook, strain or become constipated. Each time I have a general anaesthetic it’s a full week till I can poo. So best get onto that at once.

The big slump

In my post box, barely palpable among the usual wodge of junk mail, is a letter from Derriford hospital; I read it while I built the fire. It’s a copy of the neurologist’s report from Thursday, and there it was in black and white – the part about lung nodules (will need to be addressed later by oncology) and the probable primary brain lesion, space taking, high grade (she is aware of this). So there is more than a suggestion of both metastasised cancer and a primary brain tumour. A pause in my head and a pause in my breathing. I knew it all, he’d told me, and I’d somehow worked my way back around to unhearing it. So, I lost it with my neighbour over dog shit in front of the cottage, and Mum had to go and apologise (no way could I, but how bad to have to get your Mum to sort your tantrums out for you).

The doctor running my earlier interview called then to tell me I’d been selected to go on to the training stage as a GTA, a developing role where women work in pairs using their own bodies to teach medical students how to do gynae examinations. He mentioned in particular my ‘enthusiasm’ which was partly due to the lunchtime steroid rev, and I was struggling not to leap up and run around the room halfway through. I’m delighted to have moved on with the job, because it’s such an important and interesting role, through which I feel I could do something socially useful. I don’t know that I’ll be able to take it, but I came clean and they were very understanding. I’ll tell them what’s what when I know, and move from there. But I would have understood had they not taken me on. It’s lovely to know that I have something positive to look forward to, maybe, at least.

So a day of ups and downs and surreal interludes. I’m noticing more and more that I’m actually unwell; while I knew there was something wrong, I still had that propensity to explain away, to try eating better, push the exercise a bit. To think I would get better? Now I know that’s not going to help other than to keep my body working as well as it can for now.

I’m less liable to drop everything (thanks roids), I’ve noticed a few minor things that also trouble me. I can’t write very well (the right is my unaffected side) and signing the consent yesterday was an odd experience – my signature is normally big and loose, but it didn’t flow and I wasn’t connected to it. It neither looked nor felt like mine, while I would have recognised the handwriting. Mine but not me. Thinking back, my writing for the proof reading was becoming constrained, and I was crossing out more. So there’s something going on there. The right parietal lobe is where Hunt lurks, and these are all functions associated with this area.

I can no longer text without a concerted effort, and I don’t have the concentration to work out which of my wayward digits is causing the problem. I’m typing this, with lots of mistakes, by slowing down and not using my left pinkie. I need to set up speech recognition, but now have Windows 10 and the thought of having to do gags with some fake humanoid IT geek called Cortana Jo frankly makes me want to weep.

And we have a plan

Today I’ve seen Mr Paul Fewings, my consultant neurosurgeon. The surgery is next week, and should be confirmed tomorrow.
He’s an approachable, friendly man, straightforward and confidence-inducing. He interjects with a gag from time to time while writing up his notes as Tony the neurology oncologist nurse, Mum and I talk. I don’t think I need worry about the cape.
He thinks mets are unlikely, tells me I have gut inflammation (which I have had before) and which is the reason for the notable lymph nodes on my CT scan – the ones I was thinking reinforced the concerns about metastasised cancer. There is no sign of primary tumours elsewhere. I feel huge relief about that, because the thought of coming straight in with stage 4 cancer was pretty scary. Mr Fewings says the CT is “very reassuring”.
He’s categorical that we don’t know what the tumour is till we get it out: “Could be anything” and explains the craniotomy, the bit where he takes out a chunk of my skull “like an upside down horseshoe”.

I won’t be able to see the actual tumour (I was hoping to trap Hunt in a little pot where I can give him the evil eye), but will be able to get pics of the slides which will be nice. Nice? Seeing Hunt magnified?
So it’s wait and see, with a more positive second option. I know I’ve done too much research and thinking, and I did drag too much information from Titus the first surgeon. Not making that mistake again. I was up blogging from 3 am last night, no chance of sleep at all. Hopefully I will sleep later – and from tomorrow my dose of dexamethasone is halved which will most certainly help. The blog feels cathartic, get it all out now. And my mental state is okay, but so random.
Mr Fewings hasn’t emphasised the likely malignancy of the tumour either, although I have been clearly warned. But then, likely isn’t definitely. I see no value in being wholly unprepared for the possibilities, and most especially in blanking the likelihoods of what’s to come, but equally I seem to have wound myself to a tangle of accepting that one of the two worst options is going to be the outcome. Of course those extreme potentials also contain hosts of other variable factors, as do the lesser ones.
People assume that if you have any kind of medical background you know everything about your illnesses (and often theirs). As a paramedic I know lots about different conditions because I encountered most of them, some only tangentially, many repeatedly. Trauma, MIs, strokes, diabetic crises, mental health crises, people at end of life from diseases or age, social problems, disability. I know what to do in the crisis, I know how to assess, manage and treat the immediate, life-threatening concerns, manage the situation and the incident, access the right care pathway (if it still exists in the face of austerity). I’m fascinated by it all, and I research anything I meet, chat to doctors about how I might have managed a condition better, or whether a certain intervention might have been better avoided, or talk generally about a condition. But medicine is a vast area of highly specialised and rapidly-advancing knowledge. I know nothing. Yet I know too much.
I hadn’t realised till today how caught I was between the polarised negatives. I know it’s still potentially nasty, but there is some hope.
I’ve signed my consent form which says there’s a 1 percent chance of death or serious disability, post operative bleeding and infection.
A 3 percent chance that the deficits I have will be permanent in some form, or become worse, but a good chance I will recover once the tumour and associated swelling are gone (it’s the swelling that is causing my symptoms).

Once Hunt is out and identified, the treatment plan proceeds, and I should get the results hopefully on day 3 after surgery and be able to go home on the same day if all is well.
I feel my head is lighter somehow.
I have prepared myself for the worst, but I can also hold on to some hope that there’s a future. Whether that’s a long future or a curtailed one, it’s still a future. And one other paramedic insight – you have no idea how many random, flukey things can happen to you out of the ether, nor when you’re going to die, nor what from. The C word is one to muse on later, but there are some equally bad, and many worse illnesses that don’t carry the same Jihadi snuff video potency. In the meantime, if you are interested in such debates about how we frame our experiences and are in turn framed by them , the late Susan Sontag, when she had cancer, wrote a book called Illness as Metaphor about this very topic. I’m intending to re-read it in the future.