Quick update

Following on from the last panicked posting, MW is in hospital having tests.  We have been reassured that there is no cancer in her bowel.  There appears to be a bone infection which is being investigated by means of a bone biopsy.  A quick Google search tells me that an extended course of antibiotics is the order of the day.

MW will also undergo a partial colonoscopy to investigate another bowel issue but it’s not tied to cancer.

I can breathe again.  Slowly.

Fuck Friday.

#FuckFriday

This isn’t a hashtag about having casual, uncomplicated sex with other users of social media (if that flicks your switch, I’m not judging you, but you’ll not find what you’re looking for on this post).  It’s my description of today.  Because today can get fucked.  It’s been a giant, festering turd of a day.

It started at 0645 with MW wanting to go to the toilet.  So, I dragged my half asleep arse out of bed, lifted her off the bed and onto her wheelchair (with the vac dressing machine attached), took her to the toilet, picked her up, struggled to take her pyjamas and undies down, and sat her on the toilet.  Cue alarm from the vac machine saying there’s a leak in the vacuum - meaning the dressing has lifted.  Once poo had occurred and finished with, I lifted MW off the seat, took all her weight on one arm while simultaneously smoothing down the dressing and pulling up her undies/pyjamas with the other.  The alarm eventually stopped.  I got her cleaned up, got *me* cleaned up, and took her back to bed.  I managed to get a bit more sleep till the carer arrived.

The nurses called late morning, removed the vac dressing, and replaced it with dressings to be changed daily.  They’re not saying that the vac dressing isn’t working, they’re just not saying that it *is* working.  There’s still an inordinate amount of wet exudate being secreted by the wound and Tissue Viability (the wound specialists) want to look at it.

These two events haven’t completely ruined the day but they’ve not conspired to start it off on the right foot.

The day went sideways about 1230.  The GP rang.  MW had bloods taken yesterday and this was the follow-up call now the results are in.  MW is anaemic.  Seriously anaemic.  Not quite serious enough to require an immediate blood transfusion but bad enough to warrant investigation into it rather than just prescribe iron tablets.  He wasn’t sure how to proceed but would contact haematology at the hospital, get some advice, and ring back.  It wasn’t a lot of information but enough to start alarm bells ringing.  MW’s Dad has leukaemia, so we’re quite au-fait with the terms anaemia, blood-count, and so on.  Surely lightning couldn’t strike twice, could it?

When the GP rang again, his first questions were about MW’s MS, How long had she had it?  Is she wheelchair bound?  Etc.  He was particularly interested in her bowel movements.  He said that the blood test results were such that the anaemia could be caused by a severe infection, which would be tested for again by repeat bloods to be taken today.  Or, if not, it would mean MW going into hospital for an endoscopy/colonoscopy to look for signs of other things, including bowel cancer.  “Is there any blood in her stool?  Are you happy for her to have the tests done?”  I’m not kidding, I nearly shit myself.  Although I deal with affairs on MW’s behalf, I don’t make decisions for her.  Especially decisions pertaining to her medical care.  I told the GP that MW can, should, and does make those decisions herself.  The GP asked me to tell MW what was going on and ask if they could do the camera tests, if they should become necessary following the repeat blood tests.  He’d leave it with me and a nurse would call for the blood.

After the call, I was left not knowing what the hell was going on.  This GP had rung twice and left a couple of grenades behind.  I walked through to the bedroom where MW was, told her what was said and confirmed that she would have the camera tests done.  After some time talking over what was said, I went back to the front room, still worrying over what was going to happen because he’d brought cancer into the equation.  As if we’d not had enough to deal with and overcome.  I was scared.  I won’t gloss over it.  I was very, very scared.  What would the spectre of cancer mean for MW?  How would she cope if it were confirmed?  It’s one thing to say “if they should be necessary” but once you mention cancer, it sits there.  Joining all the other neon-lit elephants in the room.

I lost it.  I started a panic attack, shaking like hell and with a squeezing sensation at the top of my stomach.  I didn’t know who to turn to for reassurance.  I rang my Mum (as you do when the shit hits the fan) and gibbered at her for a few minutes.  I tried the MS specialist nurse - she’s on annual leave.  I rang the MS Society helpline.  A kind woman there listened to me half in tears, half in panic trying to make sense of the information I’d got today.  She advised me to get back in touch with the GP.  First, for reassurance.  Secondly, to tell him that I’d got an awful lot of responsibility on my shoulders, and this news had sent me into a panic attack.  It was the final straw that broke my system.

The carer had come back for her regular Friday afternoon appointment with MW, and very kindly made me a sweet tea.  She could see I was struggling and stayed with MW to keep her occupied.  MW was relatively calm, although she’d later admit to being confused by the whole affair.  I rang the GP’s surgery, still in tears/shaking, and spoke to the GP again.  He agreed to see me later in the afternoon.  In the meantime, I tried to calm down enough to help the carer to shower MW.  I spent over an hour shaking and crying.

The GP had more information at the appointment.  He’d conferred with the district nurses and they’d agreed that there was a greater possibility of some interference between the pressure sore and MW’s bowel.  This might explain the anaemia, the continued exudate in the sore, and might also explain why MW had needed two batches of antibiotics recently.  The GP has spoken to a surgeon at the hospital and explained the situation with MW’s MS and the sore.  They’ve agreed that MW will go into hospital and have a CT scan to start with.  They’re hoping that a scan will reveal all they need to deal with the cause of the anaemia but can’t rule out further tests, including camera tests.  To have MW in hospital would also give me a little bit of a break while her anaemia’s being investigated.  GP also said that cancer was less likely because of the infrequency of MW’s bowel movement and the solidity of her stool.

So, the spectre of cancer looms a little less large now.  I understand that GPs are duty-bound to be honest in their dealings with patients.  I know that our GPs have a large workload and might handle things differently if their workload was less.  I also know that I was wound up tighter than a bow-string BEFORE the first phone call informing us of serious levels of anaemia.  The potential of cancer investigations in top of that was something I couldn’t deal with.  I’m loathe to criticise medical staff without good cause, just to take frustration out on them.  That’s not fair.  This blog post is too long now for me to go into specifics but I think this could’ve been handled better.  For MW.  For me.

I try, as far as I can, to hold it together for MW.  I not only have to deal with the logistics of medical service provision - sorting appointments, picking up prescriptions, making sure that enough medications/dressings are available at any one time - but I also have to explain to MW what’s going on.  I need to comfort her too because she gets scared, gets confused.  I can’t do any of that if I’m in pieces.  I’m not in the same state as I was this afternoon, nor do I want to be.  Because today’s been bad enough.  Fuck it.

What’s happening. (Warning: might be a bit graphic)

image

Finally, the vac dressing has been applied, or Negative Pressure Wound Therapy, to give it its proper title.  The picture above shows the pump which applies the vacuum via a tube attached to the wound.  The idea is to draw out all of the dead tissue that’s been hanging around the sore for a long time.  It’ll also draw the clean, healthy tissue to the surface, effectively closing the hole around the dressing over time.  At least, that’s how I understand the information I’ve seen about it.

MW is still confined to bed rest.  That’s six weeks so far and several weeks to go before she can start to put prolonged pressure on the area.  The downside of all the bed rest is the increased risk of other pressure sores. You try and get rid of one problem and others creep up to test us.  There are new sores/skin issues on the inside of both knees, her left foot (which occurred prior to bed rest), a blister on her upper buttock where the vac dressing tube has irritated the skin, and her right ear where she has to lie on that side to alleviate the pressure from the main sore.  MW’s got that many dressings in various places she looks like a patchwork quilt.

This whole episode is taking its toll on MW.  She’s considerably quieter recently.  I don’t know if this is as a result of having to spend so long in bed on her own or not.  I do my best to keep her spirits up.  As do the carers who help us every day.  (The carers who help us now….I can’t think of an adequate superlative to describe them.  They’ve been exceptional.)  MW’s also tired all of the time.  I know fatigue is a well-known symptom of MS, and that MW has more than her fair share of it.  But this seems to have increased even more recently.  I don’t know if it’s a side effect of the new dressing, of the pressure sore (any skin issue can exacerbate MS symptoms. I know, it baffles me too), or if it’s a result of having to stay in bed for such a large part of each day.  Maybe sleep begets sleep, if that makes any kind of sense.  I’ve got to be honest and say that things make less and less sense to me.

I’m also beginning to realise that MW can’t look after herself in the same way as she was once able to do.  She’s always been insistent on washing as much of herself as she could reach (which wasn’t much but independence is important).  I was happy to trust that she’d say when even that independence was no longer possible.  I guess she’s thought that she was still able to clean herself but I’ve discovered that’s not the case.  From a practical point of view, it’s not much of an issue.  It just means that I, and the carers, will have a little more to do on a morning.  From an independence perspective, it’s a considerable loss.

MW can’t manage her bowel as she once could.  She’s going and doesn’t know she’s going (without getting too graphic).  It’s very solid so it’s easy to clean up but hard to keep away from the pressure sore dressing.  I suspect a call to the MS specialist nurse is in order.  It’s a balancing act between ensuring MW’s bowel empties and not having it go everywhere.

Me?  I’m tired.  Actually, that’s an understatement.  I’m exhausted.  I could do with about a week’s sleep but I’m not going to get it anytime soon.  When this sore’s improved, I’ll have to have a break.  Maybe then I can start to think of the long term effects of these latest deteriorations in MW’s condition and independence.  Anyhow, that’s the situation here at the minute.

A fine romance.

Yesterday, Valentine’s Day, MW spent the entire day in bed.  Alone.  That’s because she’s under enforced bed rest.  On orders of a Tissue Viability Nurse - a specialist in wound management - or TVN, for short.

MW’s pressure sore is getting on for three months old now and shows no sign of improving.  In fact, it’s worsening.  It’s being dressed daily by district nurses and has been assessed twice by the TVN.  The next step is to have it vacuum-dressed.  Which, I’m told, involves a suction machine taking out dead tissue.  I know it’s to help but it’s a grisly thought at best

Up until about a month ago, I’ve been photographing the sore’s development since it began so that MW can see what’s happening.  I mean, it is her body after all.  But it’s got to the point now where I can’t even bear to look when the nurses are dressing it.  It’s about 50mm deep at its deepest part - or 2” for those of us brought up on a mixture of imperial and metric measurements.  When a nurse says it’s nasty, that’s usually a fairly good sign that it’s not a pretty sight.  There’s some infection in there too so MW’s taking her second course of antibiotics in a month.  No more pictures.  I - and we - will just have to take the nurses’ opinion for it.

The sore also affects MW’s MS symptoms.  She gets even more tired than usual (if that were possible) and she feels the cold more keenly too.  MW is supposed to spend no more than an hour in a chair at a time.  Feeding MW her meals takes up pretty much all of that hour.

I’m aware that the dynamic of this blog has changed a little in the last few posts.  This only reflects the reality of things over recent months.  This is my only real place to moan.  I don’t want to do it on Twitter as it gets boring to read.  I know that - it gets boring to think without getting it out of me.  And woe betide you if you “do Twitter wrong”.

Twitter was full of Valentine’s Day chatter yesterday - some bitter, some sweet.  We don’t really go for Valentine’s Day anyway but yesterday really couldn’t have have felt more like just a Friday.

Not just skin deep.

An update as to how things are going in lieu of a post on a particular subject.

So, we’re about two months into dealing with MW’s pressure sore.  It’s pretty big - about the area of a matchbox at its widest and getting on for about an inch at its deepest.  There was about 4-5 weeks of the most awful smell as the tissue inside the wound area was dying or dead.  Luckily, that tissue is coming away and the healthy tissue is coming through - thanks to daily nurse visits to pack and dress the wound.

MW has been referred to a dietician by the nurses, who are concerned by her diet.  This is nothing new.  MW’s been to various dieticians since diagnosis because her appetite is so small.  I’m looking forward to her being weighed again, just for my own peace of mind.  I’m having to feed her pretty much every meal where cutlery is used now.  I’ll give her the food and spoon (it’s always a spoon) to start with.  Then I’ll hear the tell-tale sound of the spoon knocking repeatedly against the dish which tells me that her tremor is preventing her from eating.  So, I’ll take over.

I know it upsets her.  Even to the point where she’ll try and tell me she’s full so she retains a little dignity.  I don’t take any notice.  I know when she’s had enough and when she’s still hungry.

I can get away with telling her that she needs the sustenance to ensure more healthy tissue grows.

In the moments in between, I’m keeping myself busy studying language and translation.  Trying to keep my mind stimulated.

Anyhow, that’s the long and short of it for now.  Or, in terms of the sore, the wide and deep of it.

Feeding: a habit

No screed of a post this time, just me emptying my head into the void.

MW and I would usually join our old branch of the MS Society for their Christmas dinner.  Not this year.  As MW now needs to be fed more often, we’ve decided not to go.  We both know that there will be other MS sufferers there who have to be fed but we’ll still not go.  It’s one thing to have to have to be spoon-fed at home, it’s another to do it in front of 100-120 other people.  It’s about dignity, I guess.

MW also has another pressure sore.  What you may not know is that not only is a pressure sore very difficult to heal (a previous one took 5-6 months to fully heal) but skin breaks exacerbate other MS symptoms.  We suspect it came from a blister caused by the hoist sling.

It’s odd how such small, innocuous things cause major problems.

File under “Life’s a bitch”

I learned some news about a friend in Italy today.  I’ve not heard from her for some time now and I now know why.  She lost her husband a few months ago.  He’d had progressive MS for some years and she’d cared for him throughout.  Now, apparently there are concerns that her eldest son has the same disease.

I can’t begin to understand how she might feel.

What is a man?

What does it mean to be a man?  A pointed question.  One that’s likely provoked many an hour of chin-stroking in people far more learned than me.  It feels pertinent to me as a carer.  Whether other male carers feel the same, I can’t say.  I can only say that the question lodges itself in my head from time to time and provokes a good deal of self-analysis.

Recently, I found myself listening to Woman’s Hour on BBC Radio 4.  I’m not so narrow-minded as to assume “Ugh, women’s stuff - not for me.”, or that I couldn’t find it interesting, so I didn’t tune out.  After a few segments, the programme featured an interview with Jody Day.  Ms. Day has founded Gateway Women, and written a book, Rocking The Life Unexpected, both of which were inspired by her search for support whilst grieving at the realisation that she will never have children.  I listened to her story and how she described her feelings and experiences as a woman at the time her peers were becoming mothers.  She recalled feeling at odds with people around her, as though she was viewed with a little suspicion.  Perhaps she wasn’t fulfilling the stereotypical role of “woman as nurturer/carer”.  This caused my pointed question to lodge itself once again.

Ms. Day’s story touched a couple of raw nerves.  1. I am a carer.  2. I have no children and won’t be having any.

If a woman’s role in life is to be nurturer/carer (I don’t believe this to be true, by the way, but please bear with me for the sake of this post), then what role does a man have?  What’s the male stereotype?  Provider?  Hunter/gatherer?  And do I fulfil that role?  While I see this stereotype to be as outmoded as the idea of a woman’s sole role to be a nurturer/carer, it doesn’t stop me from questioning my place in the world.  A feeling similar to that described by Ms. Day.  I sometimes wonder how people view me because of what I do for MW.  I suppose it shouldn’t matter but it does.  It’s important to me to feel like I fit in somewhere.

I grew up in a shipbuilding area during the 70s/80s.  The “hunter/gatherer” stereotype was everywhere you looked; originating at home, and reinforced at school or with friends.  Add the same messages from the media and you have a powerful influence around you.  When I was a kid, I assumed this was the stereotype to follow.  When I began my working life (albeit not in industry) and started having relationships, I still assumed that I would be the ‘hunter/gatherer’ - especially when I thought about marriage and a family in my future (more on this later).  I didn’t foresee that the ‘role’ I would have in my 40s would be so different from that stereotype.

Prior to being a carer, I didn’t know a single male carer.  None whatever.  Of course, I do now.  I’ve met quite a few, either in person or via Twitter.  But prior to 2005, I had no concept of what it entailed to be a man who is a carer.  It was a cultural role that never existed for me to learn about.  It’s very rarely, if ever, covered in the media.  I know there are occasional media references to men who are carers but their role in the cultural world around us is never explained.  It’s as though they’ve just beamed down and started caring.  I didn’t get beamed down.  I’ve been through (and am still going through) a self-examination in terms of who I am as a man, similar to Ms. Day’s self-examination as a woman.  I’m not the “provider” that I expected to be.  I’m not going to go into detail about our financial affairs but our circumstances dictate that MW’s share of the household income is higher than mine.  I am a full-time carer.  A role that doesn’t appear to be valued too highly, regardless of gender.  I am a male, full-time carer.  I have assumed the nurturer/carer role that society appears to deem only suitable to women.  Even anthropologists are making inferences to the size of caring males’ testicles!!  (Don’t believe everything you read!)  When I tell someone I’m a full-time carer, the reply tends to start with, “Oh…..”, followed by a pregnant pause.  They’ve no frame of reference for meeting someone who has that role by circumstance rather than by choice, as a care-worker might.  It’s as though what I do - and by extension, who I am - isn’t “natural”.  I might as well be an alien, or a talking animal.  So, what does this make me in the eyes of other people?

The second raw nerve was about children.  The Women’s Hour interview continued, and referred to women who find themselves childless by circumstance.  (That is, they’ve not actively chosen to be child-free.)  This is a truth I’ve had to come to terms with myself.  I don’t have any children, and I’m not going to have any.  Both Ms. Day and the interviewer acknowledged that there are a number of men who find themselves childless but their experiences are different.  She’s right.  But it’s no less hard to come to terms with.  Just as I’m not a carer through choice but by circumstance, so I’m childless in the same way.  MW and I wanted to have a family.  We tried for ages but it didn’t happen.  Abortion has been part of both our lives so we assumed that there was no biological issue.  We considered IVF.  However, at that time, our energy was taken up coping with my Dad’s illness.  MW’s symptoms began very soon after Dad died.  The severity of MW’s initial MS relapse put a stop to our dreams at the time, and its ever-debilitating progressiveness has done the rest.  Although we both know what the reality of the situation is, we don’t discuss it often, save for brief “I wish we could have been parents” conversations, prompted by a TV programme or seeing a cute child when we’re out.  But these conversations never last long.  Rationally, I realise that caring for MW is too demanding to consider adoption or fostering.  But I feel very much unfulfilled as a man - a propagator of my species.  The prospect of my genes dying with me leaves a visceral scar.

Meanwhile, all my friends have gone on to become parents.  (MW’s friends have tended to be a bit older than her so the dynamic is a little different)  Ms Day spoke about how she felt a greater distance from her peers as they all had a common thread that maintains their interaction - i.e. having children.  I guess it comes naturally for parents to talk about their children: schooling, growth spurts, etc., even to strangers.  Becoming a carer is a great way to lose friends.  Not becoming a parent is another.  I sometimes sense people my age struggling to talk to me once they ascertain that I don’t have children.  It’s as though their entire catalogue of conversation is geared towards their children - either as a conversation starter or as a specialist subject to the exclusion of everything else.  Since I don’t have children, it’s assumed I won’t have anything in common with them - which I find strange - so conversation stops.  Perhaps I should turn the tables and act awkwardly towards non-carers?  No, maybe not.

You might read this and say, “what does it matter what other people think?”.  And you would probably make a very valid point.  The thing is, I look at myself in the mirror sometimes and wonder how I match up against the archetypal male ideal (which may or may not exist) that society/media would have me measure myself against.  I also wonder how other people score me against that same ideal.  Not enough to keep me awake nights but I do think about it.

So, what does it mean to be a man?  Maybe it’s all just bollocks.

Fear and self-loathing in the North.

I don’t really know where to go with this.  But the last two weeks have been difficult to say the least.  As I type this post, I can feel the urge to shut the laptop down and not write it.  It’s embarrassing to write about.  So the question is, why do it?  Because I need to let it out.  Because I’m tired of bottling it up.

I moved house two weeks ago, which isn’t an easy task.  When you’re solely responsible for moving the lives of two people, it’s harder.  There’s no-one to share the load with.  I’ve organised everything: the new house itself, dealing with the housing association, removals, the packing, getting social services on-side, organising a new care team, new equipment, dealing with the old landlord (of which more, later), swap-over of domestic services, address changes….the list is a long one but it’s all been down to me.  That’s just the way of things - it couldn’t have been any other way.

I’ve felt my stress levels rising rapidly (I can’t even write those words without feeling sneers of disapproval - don’t ask why or from who/where - I just do).  I’ve been lucky insofar as I’ve had my Mum staying with us to help with the practical things.

It got to the point that, on moving day, I was sick of hearing my name and having someone “need” to have my input or approval.  I was travelling between the new house and the old, overseeing everything the movers were doing, dealing with signing the agreements, everything.  And in the quiet minutes, being a carer.  And in the tiny cracks of time between that, being a husband - rather, trying to be.  The panic attack I had should have sounded a warning bell but I had to keep going.

We’d been in the house three days when I was involved in a car accident.  It’s in the hands of the insurers now which feels to me a little like it’s sub judice.  Everyone involved was OK and MW wasn’t in the car at the time.  It shook me like hell, and it’s been a grind dealing with insurers, garages, solicitors, the police.  It’s something I could have done without.  I could tell that I was in a bad way, mentally, but no-one can take over from me.

Another blow came the following day.  Our old landlord sent me an e-mail which put me into a spin.  He’s sought to keep the bond we left, giving the most flimsy reasons for keeping it and ensuring that we’d need to fight for it by legal means.  This, along with the fall-out after the car accident was all I could take.  At first, I was just numb.  Working on auto-pilot.  But, at the beginning of last week, I was in a bad way.  Crying all the time.  Worrying about everything.  Scared of everything.  Tired of all the responsibility.

I was thinking things that I’ve thought before and they scared me.  I just wanted to say “make sure that MW is looked after” and disappear.  I didn’t even know what I meant by that, only that I didn’t feel worthy of being around.  I don’t just mean unworthy of being in this place - the new house - at this time.  I mean unworthy of being anywhere.  That I’d made people worry, that I’d disappointed people.  That I’d let everyone down, especially MW.

My Mum was about to go home (to be fair, she’s been here for about two months now) but I had to ask her to stay a little longer.  I suspect she could tell by my behaviour that I was in a bad way.  Fortunately, she agreed.  She’s still here.  I don’t know where I’d be if she wasn’t.

I’m tired.  I’m not sleeping properly or feel like sleeping half way through the day.  I’m still crying but not as much.  And I’m still scared.  Still fearing the phone ringing, the post arriving, wondering where the next setback’s coming from.

Anyhow, this post’s rambling about with no real focus.  Which is pretty much where I’m at right now.  Rambling about trying to keep going as best as I can.  But it’s a struggle.

Life’s hard.

I’ve not blogged for a while as I’ve been moving house and crashing the car.  In the same week.  No injuries though and MW wasn’t in the car at the time.  Maybe I’ll explain more in a future post - this post is really meant to keep the blog ticking over.

The new house is an adapted bungalow with the facilities MW needs to live day-to-day.  It’s very good and we’re just getting to grips with everything it has to offer.

I now live in a community that has a few residents with disabilities.  My immediate neighbour is a man who suffered a stroke and is now reliant on his wife to care for him.  He uses an electric wheelchair to get about.  He can’t be more than 5 years older than me.

Another neighbour, who’s lived here for 10 years or so, had an accident.  I say accident, he was pushed off a bridge onto concrete.  He broke just about everything and was in a coma for 9 months.  He told me that he’s still determined to walk.  He, too, uses an electric wheelchair to transport himself around and I’d say he’s younger than me.

There’s no inspirational motive for this post - no ‘moral to this story’.  I merely observe that life’s bastard hard on some people.