Perseverance

I had a scan last week.  I was due to go and get the results today but I’m here watching comedy YouTube videos instead.  I contacted the hospital by email yesterday after cancelling and they kindly gave me the gist of the results over the phone.  Justified.

For the last few weeks, maybe months, my anxiety has been building.  I have been largely unaware of it until maybe the last 2-3 weeks.  Now the anxiety has grown and it is affecting my daily decision making.

I have spent a lot of time waiting in my life.  A lot of time in waiting rooms at hospitals.  Waiting to see if my leg is better.  Waiting to go for physio.  Waiting for the all clear.  Ever since I was a small boy I have had to tolerate waiting rooms.  I am pretty good at switching off, not thinking about things and waiting to see specialists for them to ask me questions, read through notes, look at x-rays and give me a pronouncement.  I have travelled for hours in cars, trains, ambulances to other hospitals and clinics for this privilege.  I am better waiting by myself with no distractions, switched off.

Over the last few months the waiting for some definitive statement about the disease has become difficult.  I am not in a waiting room.  I am back in the world.  I am not alone.  I am around family, friends, customers at work.  I am not switched off, I am supposed to be engaging in normal life but my life does not feel normal.  Each day is a life in itself.  From the moment I wake up I think about my health.  I am reminded as soon as I swing my leg out of bed and have to hop to the bathroom.  I am reminded when I clear my throat, I clear my throat a lot.  My nana used to do it.  I think for her it was a habit.  I am clearing gunk from my throat and chest because I can feel it coagulating.  This probing, prodding awareness that something is wrong is there all day.  Then eventually in the early hours of the morning I sleep for a while and it’s over. Until the next day.

I have started going back to work for a few hours a week recently.  They call it permitted work.  It’s a toe dipped into the water.  I thought it would be easy but it’s not.  I find it hard to get up, get dressed and drive in to work.  I find it difficult to engage with other people at all.  I find carrying out the tasks a burden.  I want to avoid it.  My chest gets tight with anxiety when I think about going out.  This weekend I am going to watch Wales v Australia in Cardiff with Beth.  She very kindly bought the tickets as a birthday present.  Right now, three days out, I want to pull out.  There will be thousands of people there, clamouring to get a seat, to get a view of the match.  The thought of being around so many people makes me feel sick.

I find it hard to be in the real world and juggle the emotion, anticipation and fear of having this disease.  I keep hoping that at the next appointment that the Professor will say things have improved, that there is no sign of the disease.  I want to be able to let go of the fear and anxiety of what might be happening.  For the last three visits things have remained the same.  There was some shrinkage initially and now things are stable.  That’s great, don’t get me wrong.  I don’t want to hear that it has metastasized and spread throughout my body.  It’s just that the hanging on is stressful and if affecting me and how I interact with people.  My mood is already quite low and it’s an effort to lift it off the ground.  I am a twat to be around.  Maybe I always have been but I feel more so now.

Yesterday my wife called me and told me she was unwell and needed my help.  She needed me to collect her from work and take her home.  I was in work.  I took her back and stayed with her all day.  I did nothing for her but I was in the house.  I phoned the hospitals and cancelled the two appointments I had today.  I could not drive up there by myself, find parking spaces in the ridiculously busy and overcrowded car parks, then get poked and prodded at a prosthetic fitting then wait among other cancer stricken souls for my CT scan result.  Who who collect the kids, the dog?  What about tomorrow, who would take the children to school?  How would Kelly get the car back from work?  Justified.

Today arrived and Kelly still feels unwell so I have to take the children to school and drop the dog at doggy day care.  This makes me stressed and is something I would rather avoid.  It is not part of my routine but at least I don’t have to talk to anyone.  Mal took the dog in, so I didn’t have to leave the car.  I then came home to watch over my wife.  I probably won’t do anything, I’ll just be in the house in case.  I can’t go into work today.  Justified.

I am aware that my decisions are heavily influenced by my fear.  What I do is affected by the knot in my stomach and the angst inside.  I have found justification for the decisions.

I fear that I am not good enough at my job and that I will let people down.  I fear that I cannot relate to people because I am less than.  I fear that I am letting my family down by being so strangled by fear.  I fear I am not good enough.  All the old fears.

I fear that the cancer is just biding it’s time.  When I am not ready it will kill me. The fear is like physical, emotional and mental paralysis.

Hardcore

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At the edge

Last week was quite a busy week.  I had an appointment with the artificial limb clinic in Swansea where I talked to the technician about getting an artificial leg.  Hospital appointments have been a normal part of my life for a long time though.  So it was no shock when he asked me to drop my trousers and cupped my bum cheeks.  This was to get an idea of how high the prosthetic would reach up and where it would sit…I think.

On Friday evening I went out for a meal with some work colleagues as one of my collegues will be leaving shortly to take up a new job role.  So this was to be a slightly premature leaving party.  It’s fair to say that we are not very good at social get-togethers as a team.  I will normally cry off such things and don’t attend.  On this occasion though I decided to bite the bullet.

For the whole day of the meal and the evening before I felt sick at the thought of going out.  Since losing my social crutch (a few pints of lager) a few years ago, any social event has been a major hurdle.  I still have one alcoholic drink but that will only carry me so far.  I know there is no rational reason why eating some food with people I know, work with and like ought to be difficult but for some irrational reason it is.  If I was thinking ahead to Christmas (still two months away) I might think it would be a nice idea to meet up with some family for a bite to eat and to share in the festivities.  As that date gets closer my anxiety is ramped up.  By the time I am a couple of weeks out, I am normally thinking of every conceivable reason why I cannot do it.  Anything so as not to go.  I make myself feel sick thinking about it.

So it was last Friday. As soon as I was told about it my brain started thinking of reasons not to go.  Do I have any conflicting appointments?  The truth is nobody wants me to go anyway and they would all feel much better if I wasn’t there.  Therefore I am doing them a favour by not attending.  I feel ill, this could be the start of something serious. I don’t want to pass it on to anyone else.  I don’t want to get sick when I am out, that would be embarrassing and spoil everyone’s night.  I can’t physically do it because I am so ill.  It’s raining and I’m not very steady on my crutches in the rain, especially on those slippery paving slabs outside the restaurant.  I had better text and say I can’t come.

I have to try and blot out these thoughts and just not think about it at all.  The best I can hope for is moderate level of background anxiety.  It’s like going for an exam.  Block it out, sit down and write/say something for a couple of hours and then get out of there.  Job done.

As I have already said I like the other dinner guests.  It’s not like I am sharing a table with people I can’t stand.  So I went and I approached it in the manner of a schoolboy about to have his MMR inocualtion.  I stand around nervously in the corridor shuffling my feet,  I enter the room, get my jab, wince with pain and then get on my way.  That sounds very insulting to my colleagues but I don’t mean it that way.  It’s just my messed up thinking.  Anyway, I went and it was fine.  In fact in some respects it was better than expected.  I still found reason to berate myself afterwards but I do that if I spend the day sitting alone at home.  I always manage to find areas of self dissatisfaction.  Even in analysing that tendency I’m mentally telling myself off.

The very next morning I had arranged another social event and my mind immediately turned to meeting with an old friend at our old high school.  Part of the school is being demolished to make way for the new modern school.  So the staff were having a coffee morning to raise money and offer the chance for former pupils to walk the corridors and wander through the past.  A couple of friends brought it to my attention on facebook and I agreed to go.  Three weeks out it looked like a pleasant way to spend a Saturday morning.  So I agreed.

For a few days beforehand I was cursing my unrealistically optimistic forecast.  What if there are people there I really disliked in my youth.  All of those eyes will be looking at me mocking and pitying the one legged figure.  The weather was bad, a storm was bashing the west coast.  I expected my friend to cancel because of the weather and difficult driving conditions.  I should cancel first so he doesn’t feel bad at changing his mind.  Oh shut up, just go.

Arriving at the school the first person I saw was a man, who had once been a boy in the year below me.  I hadn’t liked him at the time.  He was confident, charming, very clever and appeared to not have a care in the world.  He was everything I would have liked to have been.  I saw him walking and chatting with one of his clever but less socially adept school friends and they stopped outside for a photo opportunity.  He didn’t see me and I doubt he every noticed me throughout his school career.  I wanted to get back in the car and drive off.  I didn’t leave though.  I waited, met up with my friend and I enjoyed the next couple of hours reminiscing about funny exploits of the past.  I thoroughly enjoyed it.  I even suggested we meet up again at the rugby sometime soon.  I know I will regret that when sometime soon gets closer.

I see a darkness

This is going to be a different sort of blog entry.  My other blogs are short and sweet and are really only about angiosarcoma and my journey with that disease.  Writing about the journey has helped me in different ways.  Some ways I hoped for others I discovered by chance.  I want to write about something slightly different.

When I was 19 I went to college.  I went to the HE college that was closest to home.  The entry requirements were very low so there was no pressure on me to perform well in my A’ Levels.  I was not a student with high expectations or ambitions.  In fact I am not sure why I had elected to go to college at all.  It just seemed to be the natural thing that you do after your A’ levels and school.  It meant I didn’t have to think of an alternative.

I liked school.  I had found my niche in high school by the time I was 15 and it worked for me.  I had a wide network of friends and when we started going out to the pubs when we were 16/17 I went out with a group of up to 8-9 people I could call close friends.  We were quite a disparate band of waifs and strays.  We created some mayhem together and I made my fair share of mistakes, drinking too much and making a fool of myself but it was all good fun.  I did ok at school, I was a ‘B’ grade student and I did enough to keep under the radar and just scrape by.   There was little romance for me at that time, I was too shy and lacking in confidence.  There was a very brief time when I had a girlfriend at school but I was so lacking in any self confidence that she got fed up with me after a few weeks. She was the only girlfriend I had at school and we are still friends. So aside from this unfulfilled physical/romantic side I was very happy at that time.  The change that came when I left school was huge and I never saw it coming.

I left school and travelled a mere 50 miles up the A40 to start teacher training at college.  Did I have a burning desire to teach?  Not really but I liked playing with youngsters.  I used to volunteer at an arts and crafts group on a Saturday morning and each week two friends and I would get covered in paint, glue or whatever medium was in use that day.  It was fun.  So I liked playing with children and I could help to instruct with certain tasks so teaching seemed to be an easy solution to the problem of what to do next.

Despite being only 50 miles away I never considered travelling back and forth each day.  I was going to stay there and immerse myself in student life.  That was the plan, until I got there and the friends who had helped me to move left.  I had a room in a building called Dewi.  All the residential buildings had names like Dewi, Non and Myrddin which I think were from Welsh history and folklore, Tower or Twr was the only ugly exception.  Dewi was old and refurbishment was long overdue.  There were two floors, the boys on the ground floor and girls on the first floor.  It was laid out in two long corridors with students rooms on either side, directly opposite one another.  There was a main, communal toilet and shower block in the middle of each floor.  I started to unpack my frugal belongings and made a fatal flaw, I closed my door.  I was anxious about meeting all these new people.  They all seemed to be very loud and confident.  I didn’t feel confident or loud.  I closed the door on the world and in that time people started to make bonds, form new fledgling friendships.  Meanwhile I sat in my room, listening to music, thinking ‘what am I doing here?’

In my mind I thought that all of these young, attractive, able bodied people were better than me.  I thought they must look down on me and I withdrew into myself.  The more I withdrew the harder it was to come out again and a downward spiral began.  Like one of those novelty money collection bins you sometimes see, I rolled like a 2p coin around and around and inexorably down.

It wasn’t all gloom though (it just seemed that way at the time).  I made some friends.  Thinking about it they were all girls, at least half of whom I ‘fancied’.  The word fancied is quite colloquial and childish.  I tried to think of a more grown up word but fancied sums up the childish, attraction I had for practically any girl who paid me any attention.  Of course I was still too shy and lacked in confidence even more by this stage.  So acting upon my these impulses was out of the question, unless plied with copious amounts of alcohol and then I was just an arse.

So I had some friends.  I would spend time with them and there was much laughter.  I am grateful to them all now, they probably helped save my life, although I didn’t realise it at the time.  So thank you to; Carla, Louise, Georgia, Hannah, Abbie, Claire, Tina, Rachel and Jayne.  There are probably others but I have a terrible memory these days.  All of those people brought some happiness and friendship to my life and I am grateful.  They provided some friction to slow my descent.

Despite the happy times I was depressed.  I didn’t know it at first.  I had not really heard of the term depression as a medical diagnosis before.  I skipped about 80% of my lectures, choosing to walk around the small town of Carmarthen instead with headphones in my ears, blocking out the world.  Sometimes I would get on a train and visit friends in Swansea, Cardiff, Bridgend, Aberystwyth, Slough or anywhere really.  It was rarely a planned trip.  I just wanted to escape.  I hated being at college.  I had dropped out of the teacher training course after a few weeks and enrolled on a BA instead.  I had quickly realised that the thought of standing in front of a classroom and teaching, particularly when I was being watched, filmed and critiqued, terrified me.  I did the only BA course available at that time.  I didn’t attend many of these lectures either and college became a prison for me.  I would keep my head down and do my time and that was all.  I don’t know how to quit so I had to just endure.

Eventually I went to see a Dr and he prescribed me antidepressants.  At first it was quite a heavy dose, I was numbed to some of the pain. Soon my body got used to the dose.

Things didn’t really improve in the second year.  In fact they got worse.  I moved into a shared house with three girls, two of whom were friends, one was a fresh faced first year.  It was a mistake.  I had a huge crush on one of the girls and she did the worst thing, she was kind to me and tolerated my affection.  She let me lay on her bedroom floor talking with her into the early hours.  She took my calls when I rang her every day that we were apart.  She accepted my gifts.  I cupped the flame of potential love in my hands.  It would have been kinder to tell me she wasn’t interested from the start.  Unrequited love is a dangerous thing.  I became frustrated and I knew the relationship would never go anywhere but I was locked in.  My depression got deeper.  I started to write.  Sometimes pages and pages about the pain I felt in a diary.  I started to use a kitchen knife on myself to relieve some of the tension.  Small cuts.  I would get so drunk I would black out and become more self destructive.  My fists would often be swollen and deformed after being thumped into walls.  It was a horrible time.  I lived for those moments when I could lie in awe on her bedroom floor and cry oh oh smother me mother – (a bit of The Smiths there). I listened to dark, pain filled music made by depressed souls and sometimes I would sit in the bottom of my wardrobe, cocooned in a wooden womb.

It came to a head.  I was receiving counselling.  I had been referred to a counsellor through the NHS but being avoidant I missed a session so they cancelled all future sessions. Then I had started to see a counsellor who worked for a Christian organisation.  We talked and I felt a little better.  Then later after reflecting on the stuff we’d just talked about I felt worse.  I was taking 150mg of Prothiaden a day and that helped me to sleep at least.

The counselling and the drugs could not protect my fragile ego though when one night I was finally spurned.  She slammed the door on me and told me to ‘fuck off’.  in hindsight this isn’t surprising, I was like a leech, sucking all I could from our ‘friendship’.  It must have been suffocating for her.  The rejection was all that was needed to tip the balance.  It was late in the night and I tried to drown the pain with more antidepressants.  I don’t know how many I took.  I felt the weight of drowsiness in my chest but I couldn’t sleep.  I wrote down my feelings, trying to exorcise the demons.  I listened to loud music through headphones to drown out the voices. I cut myself, tiny cuts.  In the morning the pain was still there and now it was coupled with the fear of seeing her.  I couldn’t leave, I felt trapped in my room.  I just wanted a release from my feelings and the darkness I felt.  I found one in the form of a knife.  After watching the blood pumping from my body for a short while I felt fear and grabbed a towel.

I felt ethereal and numb.  I remember standing outside the kitchen door waiting for a pause in the two girl’s conversation before asking them for help. I had a blood stained towel wrapped around my arms and my t-shirt and jeans were also bloody.  I must have been a frightening sight.  One of the other girls kindly escorted me to the hospital on the bus where they stitched me up.  I am grateful to her.  By the time I got back to the house, it was empty.  They must have decided it best that they give me space and leave me alone to pack my things.  I had called a friend from home to come and collect me.  The college chaplain chaired a meeting where I could apologise to the girls and they could voice their feelings.  I don’t recall much about it.  I think that two of the girls were there, not the one girl I was so infatuated with.  I don’t know when this happened, I think it was within a couple of hours of returning from hospital.  I was hollow inside.  I don’t think I felt much more than shame.  I left college that afternoon and I never saw the girls again. Upon returning home I visited relatives who lived in my home town to tell them what I’d done and apologise to them.  I was like a little boy whose ball had broken a window.  I had to explain my actions and say sorry.  I felt I had brought shame upon myself and my family. It seems odd now.  I was ill not a naughty boy.  Such was the attitude to mental health.

I didn’t quit.  I came back and started my final year again a few months later. College wasn’t any better than before, this time, I just completed the work – not to a high standard and sat my exams.  It was a struggle but I completed it.

This was the start of a long history of depression.  I have never quite sunk that low since, although I have come close a couple of times.  For many years I had the horrible experience of waking up and going to sleep to the same suicidal fantasies.  That was just part of my normal daily routine.  It was bleak, it was normal.  It took an awful long time and lots of hard work to get past those thoughts.  I still get down from time to time.  Those neural pathways are well trod so it’s easy to slip back into that way of thinking.  But like a horseman, I have to notice where I’m going wrong and redirect the beast.

 

 

Lumps and bumps

It has been over a month since my last confession on WordPress.  I have been to Rhodes with the family on holiday, which was great.  On our return we acquired a dog who is vying to become the naughtiest member of the family.  It all seems to have passed very quickly.

A couple of weeks ago, on a Saturday afternoon we took the dog out for a walk on a nearby beach.  He loves to ‘open up’ off the leash and race around in mad circles.  He is a whippet/lurcher so he is very fast, often too fast for himself and he tumbles over theatrically as he tries to stop.  We didn’t spend very long there, Archie had a sore paw and also runs out of energy very quickly and then just wants to sleep.  On returning home I noticed a soreness in my right forearm.  As an elbow-crutch user I am used to my forearm getting rubbed and sore so it wasn’t unusual.  There was a small swelling. Again this is something I have seem before.

I thought little of it and went to carry out the onerous task of picking up poop from around the garden.  As a one legged guy this can be quite a challenge and humorous to any onlookers.  Trying to maintain my balance as I squat down on gravel to pick up poo can be tricky.  If it’s raining and windy, it’s doubly hard.  I often lose balance and end up with a smelly hand.  It was both windy and had started to rain.  On this particular day it has harder still because each movement was made painful because of a lump on my arm which seemed to be quickly increasing in size.

That night sleep was difficult.  My forearm was red, puffy and sore to the touch.  Sleep was also postponed because the dog was  unwell.  He had come to us with a sore paw and even after antibiotics it seemed to be tender.  So poor old Archie was also in pain.  He whimpered and whined.  I feel particularly sorry for animals and very young children who are in pain because they don’t have the ability to convey what’s wrong in words.  After a short time it was obvious he was in a lot of pain and would not be able to sleep, so Kelly took him to the vet.  There they dosed him up on painkillers and kept him for the night.

So we were both in pain.  I couldn’t sleep much.  Every time I turned in bed or touched my arm against the mattress I would wake up clutching at my arm, hissing and cursing under my breath.  I imagined poor old Archie doing a similar thing at the vet’s surgery but without the swearing.

By the morning I had a forearm like Popeye.  That is a slight exaggeration but only slight.  My arm had continued to inflate overnight and the difference in size between my arms was cartoonish.  It was still painful to touch and there was no way I could use my elbow crutches to walk.  Part of me liked the look of this massive arm.  I photographed it and imagined it was actually the product of hours in the gym and afforded me great strength.  I fantasised about entering an arm wrestling competition and thrashing the oppostion.

In the real world it was worrying.  I thought about the connotations of lumps and cancer and went to A&E.  Not before going to see how Archie was getting on though.  The poor little chap was not happy.  They had carried out a small operation to remove an abscess from his paw.  It had gone unnoticed before, so kept recurring.  He was given some more antibiotics and anti-inflammatory tablets and released to us.  After the surgery the poor guy had soiled his little cage and unable to get away from it had then lain in it.  One of the veterinary nurses kindly washed him before returning him to us.  He must have been a smelly spectacle and I’m glad I didn’t discover him in that condition.  He was still a very sorry looking chap though, his tail tucked between his legs and head and eyes lowered, trembling slightly.  We took him home to make him feel more comfortable and let him recuperate.  On the way though I was dropped at A&E for a four hour wait to see someone.

I won’t say it was a fun afternoon because I’m trying to be less sarcastic.  I watched the Singapore Grand Prix on one of the TVs and made up stories in my head about the other patients gathered in the waiting room.  When I saw someone the Dr ordered an x-ray and then ruled out a break and thought it was either bursitis or an infection.  He gave me antibiotics and anti-inflammatories for both conditions and sent me home.

It has been ten days since and the swelling has gone down significantly.  There is still a lump but that is slowly reducing, leaving wrinkled, deflating balloon skin.  I went back to my own Dr after a week and she thought it might be cellulitis caused by an insect bite.  I had caught a flea the night before so that made sense.  Archie has brought a couple of uninvited guests with him.  I felt quite angry with the dog for a while. This is partly because of the plague carriers he brought and partly because he is an 8 month old pup, constantly testing my patience by chewing and eating anything and everything.  Unable to use my crutches I had to wheel after him, from room to room in my chair, removing toilet rolls, dirty laundry and anything not nailed down from his jaws.  It’s hard to stay mad at him for long though.  Puppy dog eyes are indeed very enchanting and we’re soon playing and I’m tickling his tummy while he lies there, legs in the air, in a state of bliss.

Needle and the Damage Done

I have had the scan.  The first, middle distance, appointment has been met.  Now I have to wait to see the Dr and find out the results.

The scan went smoothly enough.  My veins behaved and the radiographer found one straight away.  For once, the expert listened to me when I pointed out one awkwardly placed vein.  Ever since I was a child and probably due to the chemotherapy I had, my veins have been thin, winding and located deep under the skin.  This has always meant that Drs, radiologists, nurses and phlebotomists have all struggled to find them.  So one simple blood test often takes several attempts in different arms, at different positions and sometimes on different days, when they admit defeat.  This is one reason I hate needles.  Poke, poke, stabby, stabby, jab.  In recent years I have, through experience learned the location of a couple of veins that are consistently accessible.  They are, however in odd places, both on the underside of my ulna on each arm.  This makes them awkward to get to and they’re quite painful to use.  For these reasons everyone avoids them for the first four or five attempts at least.

In November last year, prior to my AS diagnosis I was quite unwell with a bone infection.  As it turns out the osteomyelitis, to give it it’s proper name, was masking the cancer but that was not discovered until January of this year.  I was in bed most of the time and the pain in my leg meant movement was limited.  At a couple of stages I was admitted to hospital for short stays.  On the second of those visits I started a regimen of intravenous antibiotics.  What a nuisance that turned out to be.  I was discharges from hospital and because the treatment was only for about 7-8 days in total they did not put in a PIC line.  Instead nurses would visit me at home and administer the drugs via a cannula.  What followed was a dread filled period whereby nurses and Drs and paramedics tried over and again to find a vein.

The record was success on the tenth attempt.  This was administered at midnight by a paramedic whilst I lay in my bed.  The nurses rang for a passing paramedic because they are more experienced at finding veins under difficult circumstances, so might have more luck.  Even my two more reliable veins had disappeared from sight.  They started using a paediatric cannula in the end because my veins are so fine.

The drugs were given three times a day, early in the morning, early afternoon and at night after the kids had gone to bed.  The cannulas would fail after a day, my veins would just give up, so they would have to find a new location.  On one occasion the drugs were so caustic, they caused track lines to form instantly, tracing a dark purple winding path up my arm.  After a couple of days they decided to administer the drugs by drip.  The drugs were diluted and it took a lot longer but it was kinder to my veins.  This meant that the nurses had to sit with me for 60-90 minutes at a time (I forget how long exactly).  Kelly would climb into bed beside me and try and sleep during the early morning and late night visits.  Even the nurses would nod off occasionally, trying to get some shut eye before the next house call.

The nurses were brilliant and were kind, patient and persistent in pursuing their goal.  The whole experience was awful and I dreaded each visit.  I was too sick to complain about it though.  Inside I would be praying that it worked first time.

This week’s visit for the CAT scan was fantastic in comparison.

Now I have to wait for the verdict.  The appointment has already been changed twice, moved back first a week then another couple of days.  Now my focus is on the 18th August.  If there are any further delays I will ring them and reverse the alteration.  I can take quite a lot of messing about, but there is a line beyond which I won’t be pushed.  I am hoping against hope that the result is positive and the specialist will suggest further ways to positively affect my health.  Whatever the result, I am going away on holiday at the end of the month.  Nothing is going to stop that from happening.

 

Sewn up

This has been one of the first chances I’ve had to write in the last couple of weeks.  I haven’t been rushed of my feet (foot).  There has always been someone else around, so there has been no peace to write.  Even now I have one paltry hour left to write down my thoughts.  I have been reading a little though, which I think is a good thing.  I started back at work two half days a week, so there have been extra pressures on my time.

I go to work and I plod through some admin tasks and I feel as much use as a colander fish bowl.  They are safe and straight forward tasks with my butt glued to an office chair, going numb.  I forget more than I remember and sit trying to recall the information I once knew for long minutes at a time.  For the first week I just talked incessantly.  I was like a yappy, excitable spaniel, delighted to see his master.  (I have no masters).  Now I am like a ponderous old Labrador, vague muscle memory causing him to twitch in his sleep, remembering more active times.  Prolonged admin is a task that reminds me of Marx’s theory of alienation.  We lack any control or sense of productiveness as we tick boxes and submit information electronically.  This isn’t a complaint, it’s an observation.  Even these mundane tasks are beyond my addled brain.  Large chunks of grey matter have been wiped clean by drip fed poison.

I am not patient with myself and sometimes I am impatient with others.  Right now I am struggling to believe my body hasn’t fought off cancer and is making it’s way robustly to completing a one legged marathon.  Instead I am making my way rotundly, through king sized Snickers instead.  I am losing the battle with my expanding waistline.  I had planned to go out and walk miles a day on my crutches but I have been experiencing insistent pain in my hip, heel and increased phantom pains when I do this.  So this week I started a push up challenge.  I used to be good at push ups.  The challenge is 100 push ups a day for 30 days.  I have thrown in superman exercises, plank and cat pose, back stretching exercises too.  This is having no effect on my midriff, which expands and swells like a sandwich bag full of yoghurt.

I had the grotesque fantasy that my swollen mid section might be tumours growing there.  I recall panicking a few weeks ago, thinking that it felt too hard to be normal tissue, therefore it must be the result of malignant tumours.  The panic didn’t last long.

For the last few days I have been imagining the cancer has spread to my brain.  As well as my reduced ability to remember anything I have also noticed I am dropping things more.  My coordination is off.  Yesterday in the office I dropped the same thing three times in quick succession.  I say ‘same thing’ because I can’t remember what it was and it was only yesterday.  My wife mocked me a couple of days ago when I’d aimed some teasing remark at her.  She said “what did you have for dinner tonight?” I paused and remembered.  Then “what did you eat for dinner yesterday?” There was a longer pause and again the right answer.  Then she asked what we had done on Sunday and I mixed things up.  Someone has opened my head up and inserted a hand blender and given it a quick blast.

Because I’ve always had physical, mobility problems I always fell back on my brain and my ability to work things out as my strongest suit.  I learned in high school that I could handle most subjects without much effort, so I only put in any effort when I thought a teacher was watching me, otherwise I coasted.  I discovered IQ books by Hans Eysenck in my teens and would sit, hunched contentedly and complete puzzles seeing if I could improve my score.  The puzzles gave me a sense of self belief.  (In the land of the blind, the one eysencked man is king – awful pun.)  I later learned that my lack of effort coupled with laziness and limitations meant I was just of average intelligence after all.  Nothing special, just enough to get by.  But the legacy of that thinking lives on in my mind, I still sometimes act as though I was a potential wunderkind who grew old before seizing the day.  So I don’t know what I would do if my brain was attacked was savaged by the beast.

Have you ever been to a fireworks display and due to some technical errors it was delayed and eventually called off?  Initially everyone crowds around the perimeter waiting for the show to begin, full of anticipation.  Then gradually as it transpires there is a problem, murmuring and shuffling begin and a few stragglers at the back start to drift away, convinced it’s not going to happen.  After further failed attempts to get the electronic launching system working, more and more people leave to watch the Game of Thrones season launch and make some cheese on toast.  In the end when all the crowds have dissipated only one of two bored faces remain to witness one squib being launched and popping overhead.  That’s what having a diagnosis of cancer has been like for me this time round.  Even I have lost interest.  Who cares? The new iPhone 8 is due to be launched soon and it has improved battery life.

Don’t get me wrong, I don’t want to be followed by professional mourners, weeping and gnashing their teeth.  (I hate grinding teeth more than almost anything, even the thought of it is getting me vexed – shudder.)  I want to kick this thing hard in the ass and be able to participate in the race of life, FULLY, whether it’s a one legged marathon or a handstand sprint.  Tell me the rules and I’ll give it a go.

This is the song that was running through my head as I wrote this.  It took me ages to find because I couldn’t remember the song or the artist.  Listening back to it they could have stopped it at 3 minutes and done away with the yeh yeh yehs.  If you run out of things to say just stop talking.

A creature made of clay

There is still one month to go until I next see my specialist.  So I am in the same position of knowing nothing more.  I told myself I wouldn’t write anything else until I do know more but here I am with free time to think.  I have had a few spells of depression recently.  Nothing overwhelming but enough to derail me for a couple of days.  I was really saddened to read that a lady I spoke to on FB and through this blog died of the dreaded AS recently.  Henrianna seemed a lovely soul and wrote a blog and poetry on WordPress.  I only read this news yesterday and it makes me feel sad and fearful – the familiar duo.

I didn’t know Henrianna, we only made a brief, limited connection because of the disease and our blogging about it.  So my brow feels a little heavy as I think about her and her family today.  She was a young woman, dragged away too early but I’m glad she isn’t suffering any more.

I’ve been listening to a lot of music by an Irish folk band called the Dubliners over recent days.  I have also watched documentaries about them and in particular about a singer and banjo player in the group called Luke Kelly.  I have never paid much attention to Irish folk music.  I was first turned on to Irish music by a girl I dated some years ago.  I downloaded an album by The Wolftones at the time and there were a few quirky tracks on there I liked.  However I thought of it as frivolous, diddley dee music, good for a rousing sing-along.  Then I followed a link by someone on FB to this one song by The Dubliners, sung by Luke Kelly.  The song was called Raglan Road and he sang with such conviction and emotion and the words prodded me and nourished my soul.

I’ve been enjoying watching YouTube clips of the band and listening to them perform since then.  I’ve compiled a list of songs I like most and they are all deep, touching ballads.  I thought of a couple I could have played at my funeral in lieu of hymns.  That might seem morbid enough but then I watched a documentary about Luke Kelly and he died tragically young at 43 from cancer.  Good grief, is it everywhere?  It seems this disease pervades every nook and cranny.

It occurred to me that I might be seeking out these examples of cancer and that it has become a part of my identity.  I think that there maybe some truth in that.  I was the little kid who had cancer, then the guy who walked with a limp because he had cancer, now I am the one legged bloke who lost his leg because of cancer.  I was a cancer survivor and now I am a cancer sufferer again.  It honestly doesn’t occur to me all the time though.  It’s not a thing I have tattooed on my brain that affects everything I do and say.  I forget for long periods of time that it is there or has ever been there.  Then it pings back into focus.  It is hard to forget for long when it is so prevalent, when so many people are touched by it.  I went on watching videos about The Dubliners wondering what they did when Luke died. They carried on, a guy called Ronnie singing most of the songs.  His voice was so deep and rich someone described it as sounding like “coke being crushed under the door” (coke the fuel, not the drink).  He died some years later of…cancer of course.

I don’t think I seek it out, it’s more a case of when you experience something personally you then become more aware of it around you.  It was there all along but you didn’t notice it so much before.

This blog is about angiosarcoma.  If it weren’t for that disease I would never have written this blog that I post on FB.  Cancer’s tendrils run deep within my life.

I have come to a conclusion about life and that is the older I get, the less I am sure about anything.  I go with my gut instinct but I don’t think it matters which way I go, life has no fixed paths.  We are born and die and we fill the middle part with whatever we can and if we’re lucky we get to have some say in what we choose.  Sadly some people get cancer.  It’s not because they are bad people or that they made bad choices it’s just a roll of the genetic dice.  Sometimes they survive and sometimes they pass.  If we’re lucky we get some treatment to help our bodies to fight the disease.  It’s horrible and I hate that some people die before they feel ready.  I mourn their end and feel grieved. I feel grief for Henrianna Nathanari Sena.