Negative positivity

I’ve been thinking about positivity a lot recently. It feels good to have positive vibes heading my way from all directions. Yet positivity is also a kind of scourge of our age.

The expectation of a positive outlook can exert a huge pressure onto a person like me, who is in a situation where life is literally subject to the whims of fate. Positivity given is always meant well in my experience, but how often it has the opposite effect. I tend to be positive, to take positive – if not crusading – actions. But sometimes I want to scream, or lie on the floor and give up. That starts to feel like a failing when you’re being held up as a paragon or an amazing person for getting on with it in whatever way presents itself. If that involves three months of crying constantly, then I don’t have a problem with that. It might even be a positive act.

I know I’m lucky; lucky to be able to write and to have found a wonderful writers’ group in Stirling where I attended the university as a mature student in the 1990s. The writers at the local, council-supported group were instrumental in the development of my style and interests. One of my favourite quotes on how to be a writer is from the late, great Maya Angelou whose writing I first encountered via the group:

“Some critics will write ‘Maya Angelou is a natural writer’ – which is right after being a natural heart surgeon.”

It’s being able to write, and being able to adapt to the brain swelling-related deficits in that area, that’s enabled me to keep going with my head pretty intact through the trauma of the past few weeks. It’s also given me a purpose where the various elements of my fairly random life path have melded into this blog.

One aspect of dealing with the big C word is the power that word holds; I described it as a Jihadi snuff movie in an earlier post. Having already had breast cancer in 2010/11, this isn’t a new experience. There are plenty of other illnesses that are equally or more life-threatening, yet they don’t carry the punch; If there’s a disease of the age, cancer is to us as TB was to the Victorians. However, considering a brain tumour is quite another thing. It’s affecting me in a way that breast cancer never did (I didn’t even know that was there), because it’s messing literally with my mind and also my body. I feel ill.

When I was on the speedily efficient pathway towards neurosurgery at the start, I had a momentum. That came to a juddering halt two weeks ago when the meteor of the bed crisis walloped into my path, cracking the earth beneath my feet and setting up a series of tremors and reverberations that continue to circle. Circling is not what I need, I need a positive pathway towards discovering the nature of Hunt and then a treatment plan. So to be hit by the arrows of mindless positivity really does grate at the moment. As does being told how well I look. It’s the steroids. I neither feel, nor am I well.

Hunt the tumour made himself known as the steroids reduced the surrounding swelling which had caused me so many problems over the past months.  I felt Hunt initally as a pliable, generalised right-sided entity, but now he has assumed a more weighty form. He’s curdled and crusted into a hard-edged, dark presence like a bakelite light switch. His carapace still wobbles at the back of my neck, but I can feel him exerting pressure and the focus of my headache is there. Worse I can feel him growing. Little prickles, an outwards force from the centre. All in my head? Yes. But whichever way you interpret that, it’s not positive.

I’ve had to continue ask people to back away from messaging me, because I can’t connect with them at the moment.  While they’re all asking me not to reply, I feel bad not doing so. The utter desolation from Friday’s cancelled surgery meant that each kind thought and positive message made me feel more like Saint Sebastian, under barrage from ironic arrows as everyone tried to tell me it’d be alright. It won’t. So much love and support is what’s keeping me going, of course, but I can’t always engage with it because this is my world, and as Kari keeps telling me, it’s bloody hard, and it’s going to get harder. I like that. I need to know the worst too. I need to deal with that.

Addenda

Yesterday my cousin Sarah and heavily-pregnant goddaughter Kayleigh visited. We talked for hours about our childhood, and about Kayleigh’s baby and plans for the future. We also talked about some of the darker aspects of life. I’d call that a positive experience overall, with some balance.

My GP also called to see how I am, having seen the BBC Spotlight interview. My white cell count is slightly raised from the bloods he took last week, and so he wants to do another blood test this week in case I’m brewing an infection. Hopefully though it’s just the effects of the steroids. He has emailed Sarah Wollaston MP, who was a Devon GP and whom he knows, on my behalf. The NHS is still there for me.

I didn’t hear from the hospital which is beyond disappointing, and I got no reply to my calls, leaving a message on Tony’s answerphone in the end. After Friday, I think they owe me a call even if it’s to say, as I suspect, that this week’s not looking good either. My friend from Friday, however, texted and has had her new date confirmed, which cheered me no end. She also advised me to contact my Macmillan nurse to chase up what’s going on; Ellie had come to see me as I waited for surgery on Friday, but didn’t know it had been cancelled. I’d forgotten about Macmillan in the rush, because I wanted to get the surgery out of the way and it had been full steam ahead. I can also have some complimentary therapies there. So my plan today is to access some of that holistic support offered by Macmillan.

 

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Blurred

The blurred vision that hit me yesterday evening really did hit me. I tried to be calm, to contextualise it, but the realisation that such a thing could happen led to a kind of bleakness, especially because I couldn’t get on google and research it.

After dinner, I washed my face, and noticed I have eyebags that are protruding over 1cm, which started me thinking more about the steroids as a cause. By 9 I’d worked out how to see enough to read, and as I posted in a PS, blurred vision is on the list of side effects for dexamethasone – as is, rarely, breathlessness which has worsened recently as I said.

I can’t go with the cataracts, since it’s so soon and it developed in a flash, in both eyes (although I suppose it might have started in one, and the other compensated, till that went too).

I might suspect Hunt if it were in one eye, perhaps, but he’s in the wrong place for that unless generalised swelling were responsible. Over the past couple of weeks, though, the signs and symptoms associated with that swelling have improved steadily to the point where I know the steroids are working, so that doesn’t fit. So I feel calmer this morning, but the magnitude of the whole is encroaching on me by degrees and leaps as the dragging wait for surgery continues.

Back to that brain thing again, so many possible consequences for so many areas of my life, so that I’m back to bargaining (with whom? I don’t know) between preferable, tolerable and no way. I have a bloody good chance at least initially of recovering, but of course there are risks, and then there’s the whole cancer thing, and the effects of the treatment which can be permanent.

On a positive note, I’ve experimented with the ondansetron and it’s marvellous. I take 4mg about 15 minutes before breakfast and steroids, then again before lunch, and before dinner. If I take them twice a day as suggested, lunch is hard particularly because the second steroid dose is at one, and I most certainly need ondansetron for that. I forgot the dinner ondansetron last eve, what with everything else, and felt suddenly and dramatically nauseous at 9 till I popped the last pill of the day.

The saga of the Ms issue returned on Saturday; the final forms from the DWP arrived, following that tussle with the DWP advisor over the legality of a woman wishing to be addressed as ‘Ms’.  Under ‘title’, it says ‘Miss’. I’ve crossed it out, over-emphatically, in black biro and replaced it with and inch-high ‘MS‘. Take that DWP advisor! And I trust it won’t result in a delay to my benefits. I’m in no mood to compromise.

A final comment from my Mum, Jenny:

“Now don’t forget to take notes on all this, I’d say you’re sub-standard mentally and you’ll forget.”

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.