Subterranean Home Sick Blues

I thought it might be a bad idea to write this blog when I was angry and fed up.  I didn’t publish it straight away.  Now I have read it back it starts off sounding like I’m saying “life isn’t fair, boohoo.”  If I was being brutal I could say the same for most of my blog entries.  I know life isn’t fair and I accept that.  As I’ve said before the blog allows me to “get things off my chest.”  Like other entries I think that there are others out there who might be experiencing the same problems and it’s sometimes reassuring to know that you aren’t alone.  Sadly it doesn’t fix anything.  We each have to find our own way to manage but maybe in sharing it helps other people a little.

The summer is rushing by and I am sitting in my home, drinking a healthy smoothie and feeling poor.  I have not been able to work for some time now and the effect of being out of work is beginning to take hold.  Savings are disappearing in order to pay for everyday bills and the insufficiency of welfare benefits is becoming more apparent every day.

We live in a three bedroom bungalow.  I chose to move to this house just over 14 months ago because I knew my mobility would soon be compromised and I would not be able to manage climbing stairs.  The children are getting older and need their own space and privacy so separate rooms are a good idea.  This house also has a separate en suite bathroom, this has been a boon because when I’ve been ill I couldn’t manage to walk any distance so having a bathroom right next to the bed was a godsend.  We’re lucky and have more than a lot of people.  I know many families that have to endure horrible living conditions.  I have been lucky enough to find a home like this but now I am out of work it’s hard to pay the rent.  It is difficult to pay the council tax.  I am being penalised for living in a house that meets my families needs.

I don’t live a luxurious lifestyle.  I don’t have many expensive possessions because I don’t care about things.  Toys and baubles are of little interest to me.  The vast majority of my clothes are second hand from charity shops or bought on eBay.  Why would I pay the full price for a brand new jacket when I can buy one for a fraction of the price that has been worn but is still in great condition?  I see no reason.  My eating habits are frugal.  I don’t dine on lobster every night.  I don’t smoke.  My alcohol consumption costs about £5 a week.

I have a subscription to Amazon Prime, which I bought 10 months ago and costs the equivalent of £5 a month and Netflix which is about £6.  I cancelled my Sky TV subscription, because it is too expensive.  My mobile phone is second hand and I am tied to a tariff for another 6 months.  My broadband costs £7 a month.  I am tight-fisted by nature.

I have booked a holiday abroad this summer.  That money came out of my savings.  It is a luxury, I admit. Lets face it I don’t know how long I have left on the clock and I’d like to see some other parts of this beautiful world before I check out.

So aside from booking a holiday I live a fairly frugal lifestyle.  Yet I feel as though I am being squeezed by the authorities to scale back further.  A couple of weeks ago we received some extra tax credit support because I am not able to work and they took that back by reducing the housing benefit and council tax benefit I’m entitled to.  What is given with one hand is taken with the other.  It is like a backstreet con trick.  While I am watching the cups being switched around, hiding the one elusive ball, the conjurer is removing my watch and wallet.

I feel fine right now.  I am not receiving treatment for AS and my phantom pain is manageable.  I know that I am likely to start treatment for AS again in August, just a few weeks away.  I would like to go back into work so I could take this financial worry into my own hands and solve the problem.  However I won’t be able to work if I restart chemotherapy and/or become more sick and a new job will not afford me the benefit of paid sick leave.  Therefore I will be in a worse financial situation.

I have been in constant employment for 17 years with different employers.  I feel as though I am failing my family.  I could have chosen a different career path, one that paid better so I could have saved more money.  I could have bought a house, when I was able to get a mortgage, so I could at least ensure my family had somewhere secure to live.  (I lay in bed awake last night worrying and fantasising about winning the lottery and buying a house.)  Instead I chose a career path that satisfied my soul.  I chose to work with people that are often marginalised and have to work harder than most to achieve what most of us take for granted i.e. independence, their own home, the right to have a relationship, a job, enough money to live on, acceptance and support.  So despite feeling regret for wasting money and not having saved enough, I don’t regret my choice of career.  Like most men I have this deep seated need to provide for my family.  When things go awry I feel guilty for not meeting this need.  Things have gone awry and I cannot provide.

This isn’t a cry for help or a plea for someone to crowdfund on my behalf.  Anyone who knows me doesn’t need me to say that.  This is an annoying and frustrating by-product of being sick.  I wish things were different but wishing doesn’t change things, however there is always a plan b and if that doesn’t work there are 24 more letters in the alphabet to try.  Nothing I’ve experienced has overwhelmed me yet, I don’t think some money trouble is going to.  As a friend once told me “cut your cloth according to your means.”  So it’s back to the drawing board to find another way.

I’m going to pop a poem here by Erin Hanson.

What if the grass is greener on the other side,
Because it’s always raining there,
Where the ones who never fail to give,
Hardly have enough to spare,
Where the people with the broadest smiles,
Have pillows filled with tears,
And the bravest ones you’ve ever known,
Are crippled by their fears,
It’s filled with lonely people,
But they’re never seen alone,
Where those that lack real shelter,
Make you feel the most at home,
Maybe their grass looks greener,
Because they’ve painted on it’s hue,
Just remember from the other side,
Your grass looks greener too.

The waiting room

I have started to think that I am in a waiting room.  I thought I was plummeting along at an incredible speed towards death.  It then turned out I wasn’t quite reaching warp speed but I was still definitely heading towards my demise.  Now it transpires out I am in a waiting room pending a prognosis.  I have spent much of my life in hospital clinic waiting rooms.  I think the longest I’ve waited was about 3 hours for a clinic appointment.  I sat on the chair, Zen like, my eyes closed but inwardly screaming; “What the hell is going on?  Why am I still waiting here?”  I didn’t complain however.  It was all internalised rage.  (Not very healthy Paul.)  Now I feel as though my whole life is taking place in a waiting room.  I am too fearful to leave this room to get a sandwich or even go and use the bathroom in case something happens and I am called?

I want to be ready.  I don’t want to be caught unawares, unless it’s over in seconds.  Even then though I would be shouting, panicking, “Not yet, I haven’t said goodbye to (insert important people in my life).”

I might have written this on here before but it reminds me of two occasions that involved the bathroom and mortal fear.  On both occasions I was sitting on the toilet and letting nature takes it’s course and suddenly, my field of vision narrowed, I started to sweat profusely and everything sounded as though I was hearing it under water.  I could feel myself swaying and held on for my life.  If I’d attempted to stand up I would surely have collapsed in a heap. On the two times this happened I thought I was going to die and I was filled with panic.  On both occasions my main fear was that I would be found on the toilet and hadn’t had time to wipe.  Oh the shame!  Even at these times I was worried about how others would judge me.  What a plum.

Of course I know we are all heading towards the end.  Nobody is taking a different excursion route but being told it’s coming sooner than you thought creates shock and a sudden reassessment.

I have realised something this week.  I have realised that there isn’t anything I should be doing.  There is no prescriptive list I ought to tick my way through.  There are no right things to say or do.  In fact there are 7.5 billion right ways because we all have our own interpretation of what should or shouldn’t happen.  I have been reading about Sartre and existentialism this past few days and he says we are all free to make our own meaning in life.  This freedom to choose our every move however creates anxiety and fear.  I can definitely concur with that.  I am good at angst.  However in recent years I have learnt that there are no right answers.  There is just the one I choose.  That said I still mull over things and analyse situations before making decisions – I am programmed to do that now.  I’ve decided that like existentialism because it validates a lot of things I already thought and everybody likes to feel like they’re right don’t they?

I have to confess something here.  Months ago, shortly after being diagnosed with the big C, I felt this urge to connect with people in some way before I kick the bucket.  I thought I must go out for lunch with family, invite old friends over for a barbecue and join new groups.  What I have learned from my feelings and my subsequent actions is I don’t want to do any of those things particularly.  I like being by myself a lot of the time.  I don’t enjoy being around lots of people.  I feel uncomfortable and want to get away.  Not in a panic attack sort of way but just a general sense of discomfort and unease.  I have always felt like that.  I used alcohol to help me relax and lower my guard in the past.  I was in a supermarket yesterday, it was four thirty in the afternoon.  It was pretty busy, lots of Mums and Dads with children from school.  There were too many people.   I didn’t want to be there.  I hid in the quieter part of the store, upstairs, until it was time to leave.

I think I have found a way to connect with people – through this blog.  I don’t want to pretend to be confident and relaxed in a group, chatting and shooting the breeze.  I don’t understand the point of a lot of talk.  When I do try small talk, inwardly I’m berating myself; “Shut up, you’re waffling, nobody cares about Jean-Paul Sartre and anyway you’ve got it all wrong.  Why did say that?  It’s not true.”

On here I can edit myself.  I just deleted a paragraph that went off on a tangent.  I can’t do that whilst I am talking to someone.  However when I am writing I can plumb the depths of my soul and be honest.  Most face to face interactions happen too fast for me to stop and think about what I really think and feel about things, so I just blurt out words.

I’d like to find some peace with myself, to stop trying to improve and just accept that this is me, warts and all.  This blog allows me to express myself honestly.  I have written a blog for years but nobody ever read it before.  So I only wrote an entry when I was especially angry or upset about something.  There was no feedback so I never pushed on and explored.  I owe everyone who reads this a debt of gratitude.  If you didn’t read it I might not be encouraged to write.  Writing it allows me to exorcise my inner demons and work things out.  I can’t think of anything better to do whilst in the waiting room than try and find peace with myself in the world.  It’s better than doing crossword puzzles.

Kelly and I are going to listen to some music at Modfest on the weekend.  This is one of my favourite tunes at the moment.

Into the void

That sounds like a very bleak title for a blog.  I don’t feel bleak.

I feel under pressure right now to do something life affirming or noteworthy.  When you are presented with a death sentence some people are filled with a real sense of their aliveness and want to express that in some way.  I know after I got used to the idea of having Angisarcoma, I felt like I wanted to do something productive and useful with my life.  However after a while life settled back down to the ordinary and mundane.

I watched something on TV the other day and although I cannot remember what it was, a guy in it said the words; “Life is for living not for sitting around watching TV waiting to die.”  Or words to that effect.  My wife and I looked at one another and I felt under pressure.  My brain screamed “You see!  You should be doing something.”

Yesterday I continued my search for things I can do to raise money for cancer charities.  The idea for walking a few miles was shredded by my brain as too dull and I started thinking about more daring, wild things.  I could jump from a plane.  What about a bungee jump.  I looked online for fundraising ideas.  Shave your hair – I’m bald.  Shave your beard – my face is bald.  Humph, I have to find something exciting.  Climbing a mountain?  That might be tough with one leg.

So much for the money raising exercises then.  Very worthy of you to think of them though Paul, maybe the act of looking will ease the guilt.

I have booked a holiday for the summer.  I wanted to go to Greece and now I have booked a holiday in Rhodes.  Maybe not super exotic or exciting but a little more interesting than sitting at home watching Netflix or YouTube.  A lot of people mention travelling on their bucket lists.  Has the pressure gone?  No.

I have started to volunteer some time for a local charity, doing some admin.  Worthy and  a useful way of spending my time.  I still feel this pressure.

I feel as though cancer has gone onto the back burner.  That’s a good thing because who wants to spend their whole time thinking about cancer and dying?  Not me, but should I be spending time thinking about and doing things as a consequence of having cancer?  For example why am I not driven to fill my life with joyful, thrilling experiences?  This is the pressure I feel.  The film Final Destination popped into my mind whilst ruminating a couple of days ago.  In the original film made in 2000 the main protagonists avoid their fate, which was to die in a plane crash, because one of them had a premonition of the event.  Death is not going to let them off the hook though and seeks them out one by one.  They each die in gruesome, “teen horror” ways.  After the first couple of youths die the film’s heroes work out what is happening and try to outrun and outwit death.  I feel this pressure too.  Due to a histology report on my amputated limb I found out about this cancer and now I know it is coming to take my life.  I am trying to outwit it with the medical profession’s intervention and some homespun remedies.  Unlike the characters in the film I also feel as though I should also be making the most of my remaining time.

So when I have days when I am doing nothing – formerly a favourite pastime – I feel guilty.  I could be reading Foucault or Chomsky.  I could be learning to scuba dive along the reefs of Australia.  I could be learning a new language and way of life in India whilst walking across the sub-continent for charity.  I could be following my political compass and joining a protest group and helping to organise events across the country.

Why aren’t I doing these things?

In part I am lazy.  I am shamed by my wife’s work ethic.  She doesn’t stop working, for her father’s business or for her family.  Me on the other hand, I think I should get a round of applause if I wash a cup or put the washing machine on.  I do what I have to and no more.  When I was a child I used to put massive effort into working out ways of getting out of chores and responsibilities or thinking up my justification for doing so.  I admonish the kids for doing that now but recognise I did the same.

Fear is another factor.  I feel fear all the time.  Fear of change is like a chock under my wheels.  It stops me from going anywhere.  “If I do this it will mean I have to go there and I don’t know anyone there.  What if the people there don’t like me?  If I call this person they might want to meet up.  Where will we go?  I will feel uncomfortable there, people might stare.  No, I’ll stay here, it’s safer.”  I’m better than I used to be at challenging these fears.  If I recognise them that is.  A lot of the time I just feel the fear and react to it unknowingly.

I hesitate to say that another reason I don’t rush to the aerodrome to book helicopter flying lessons or pop into a cage to be lowered beneath the waves to observe sharks is due to my nihilistic world view.  I hesitate because I know that some people who read this blog have sincere religious beliefs and I don’t want to offend anyone.  I am an athiest though and I believe when I die that is it.  I don’t believe any spiritual power will raise me from death and judge whether I go to heaven or hell.  I don’t think how I decide to fill my days makes any difference.  If I explore the Amazon jungle in search of a new species of butterfly or sit on my butt eating Pringles and watching Mad Men it makes no difference to the universe.  All that matters is I do what I think is right.  That sounds really selfish.  That doesn’t mean that I will do nothing.  I have developed my own set of morals and I apply them to my life with the same stumbling fidelity as everyone else.  Sometimes I behave in accordance with my morals, other times I get it wrong and feel bad.

Sitting on my rear end, doing nothing is a waste of time but sometimes that’s as much as I want to do.  Maybe tomorrow I’ll be more active.  Maybe I won’t.  I am not going to spend eternity regretting anything, I won’t have the opportunity.  I will probably regret not doing some things whilst I am still around but I am not going to chase them all down like a terrier rabidly pursuing it’s own tail.

Today I did nothing.  I listened to a podcast about politics and philosophy, I became aware of a philosopher who was new to me and read a synopsis of his work.  I downloaded a book I want to read.  I read a couple of newspaper articles and blogs on the subject of politics and philosophy and I wrote a blog.  I find these things nourish my mind and help me to understand myself and give a structure to my life so it was quite a fulfilling nothing.  Tomorrow I will skydive…maybe.

 

 

 

Scary Monsters

I have rushed to my laptop to write this blog entry today because of fear.  I have been stuck in the house all day because the weather is awful.  The rain is the relentless, fine rain that soaks you in an instant.  Therefore I have struggled to find things to do to occupy myself.  I started to look into things I could do online.  I had an idea last week that I’d like to do some kind of sport.  I have always been highly competitive and thought that I’d look at wheelchair based sports.  I saw a photo in a local newspaper last week of a wheelchair basketball team.  I thought, “I could do that.”  I also thought about what other wheelchair friendly activities there might be.  I contacted the local sports disability officer and she sent me a list of events and clubs.  Then I began to wonder would anyone let me participate in activities such as these?  Would I have to fill out an application form and then reveal I have cancer?  As if my shiny bald head and patchy eyebrows weren’t enough of a clue.

So I then Googled “what do you do when you’re diagnosed with terminal cancer?”  That’s when the first pangs of fear started to kick in.  Just thinking about the words terminal and cancer together brings a reality to bear that I don’t usually dwell on.  Nevertheless I ploughed on and started to read some of the suggested links.  Some were newspaper articles, most were produced by the NHS or specialist cancer charities.  I read a couple.  “Get your affairs in order” they say.  “Some people don’t accept the diagnosis and die searching for a cure,” another read as though that is a negative outlook to have.  They talked of “palliative chemotherapy,  not to cure the patient but to extend their life”.  Another website talked about the gradual process of slowing down, spending more time in bed asleep and finally going into a trance like state.  What?  Was that meant to sound consoling?  It doesn’t sound that way to me.  It sounds like being suffocated by a pillow.

Another was a newspaper article about a Dr who was given the incurable cancer diagnosis and then worked her way through a bucket list.  There was lots of visiting different places and a trip a glider.   She also managed to write two books – I would love to achieve this goal too – and I just found her blog.  I started to read her penultimate entry and I could not get beyond a few words.  I wanted a happy ending for her as I would like a happy ending for me.  In my head I’m not really contemplating dying.  I know that it is very likely this will kill me but I am loathe to give cancer any footholds in my psyche.  I cling to the idea that I will be lucky and things will work out for the best.  This is just another learning experience for me.  I want to download the Dr’s books onto my Kindle and learn from her experiences but I know that she died last year and that removes hope and that will probably stop me reading them.

I thought that if I write down my thoughts it would help and I would feel less fearful.

I sometimes wonder what people think when they see that I have posted another blog entry.  I know that some people find the blog helpful in some way as it expresses thoughts they have had or echoes the experiences of a loved one.  They tell me this and it encourages and heartens me. However other readers are silent and make no comment.  I think that some must see that I have posted a blog and roll their eyes and think “not another one”.  They must seem very whiny and self indulgent to some people.  I am not going to apologise for that.  I have decided that this blog will only be about my thoughts and feelings regarding my illness.  These are not the only thoughts and feelings I have.  Everything else I either keep to myself, share with loved ones or post on a different blog.  This is for me and for those people that find it helpful in some way.  Today I rushed to write something down so as to exorcise the feelings.  I don’t want to carry those negative thoughts around so I’ve planted them here.

Now I feel calmer I will pursue my plans to get on with life and set some goals.  I have made a start.  So far I have listed some vague ideas which are as follows;

Develop my writing through my blogs

Take part in some physical sport

Travel abroad to new places

Visit other parts of the UK

Spend more time outdoors.

Even as I wrote these initial ideas I thought, they sound a bit lame.  Where is the swimming with dolphins, climbing mountains and jumping from an aeroplane?  None of those brief experiences really interest me.  I love animals and seeing dolphins fills me with happiness.  I was also pleased to see some Goldfinches, Pigeons and Jackdaws all feeding together from our bird feeder today. I am not picky about what species of bird or animal I see.  I would be equally excited to see a rat scurrying by.  I am realistic about mountains.  I could see myself walking with crutches along some of the local Preseli mountains (small hills) but the Himalayas are going to be a bit of a stretch for a one legged man.  I enjoy flying in an aeroplane, I love the buzz of taking off and landing especially.  I’m not sure I’d enjoy jumping out of one.  I wouldn’t be terror struck at the idea but I would likely soil myself with the overwhelming sensation of falling like a stone from a thousand feet.  I can do without that sort of thrill to be honest.

That said I think I can do better that “spend more time outdoors”.  This is going to be a work in progress. If anyone has some suggestions please leave a comment.  I love reading the comments.

The name of the Doctor I read about in a newspaper article (2012) is Kate Granger.  Her books are on Amazon.co.uk and her blog is here: https://drkategranger.wordpress.com/

Years ago I went to see a lady who gives motivational talks.  She also races her wheelchair in the Olympics, handbikes across countries, kayaked the inside passage from Alaska to Canada, travelled on a sit-ski across Greenland as well as many, many more things.  I fell in love with her, she is so inspirational.  As part of her talk she showed a video footage of her ski across Greenland accompanied by a Kings of Leon song called Day Old Blues.  Beth and I used to sing this very loudly in the car.  I’m certainly not going to try skiing anywhere, I hate the cold and fall over in snow and ice.  Here is the video for your delectation though.

Moving on…up?

Yesterday was the day I had been waiting for, for the last three weeks.  It was the day I was to find out the results of the last CT scan.  I had managed to put my thoughts and feelings regarding the results in a box and ignore them for three weeks.  I was lucky enough to go on a weekend away at a holiday park and then go away for a weeks holiday with my family.  During those times I didn’t give cancer a second thought.  My body has started to recover from the side effects of chemo and I am feeling better with each passing day.

The results were delivered in the specialist’s normal perfunctory manner as if he was reading out the weekends football results.  He is obviously so used to doing this, it’s become a matter of course.  There has been no change since the last scan in March.  No growth and no shrinkage.  No more lesions, no fewer.  The plan going forward is to have another scan at the start of August and decide what action to take then.  He thinks that a break from the chemo will give my body time to recover.  He mentioned a new treatment.  One I have read about and I know it has had some positive results.

I have to admit I was disappointed.  I have been taking CBD oil, apricot kernels, fulvic acid and have even gone vegan/vegetarian for the last four weeks.  I convinced myself that this would all make a difference and that the tumours would have shrunk or even disappeared completely.  This isn’t a glass half empty scenario, it’s just when you convince yourself so strongly you will get positive result and then get a neutral one there is bound to be disappointment.  I mulled it over for a couple of hours and then decided that I will have to keep on with my efforts (it may be that all of those disgusting tasting things are preventing growth) and move on.

The thing that is bothering me is taking myself out of safe mode.  I have been thinking of my recent attitude and approach to life as neutral.  Like a car in neutral I have not been moving forwards or backwards.  I have just been maintaining my position.  In preparation.  Yesterday another, better analogy popped into my head when dissecting the results with my wife.  I am in safe mode, like a PC.  Sometimes when something goes wrong with your PC, when you get a virus through some spam email, things don’t work properly.  The PC is running slow or certain programmes don’t work, or as I’ve experienced a couple of times, nothing works.  So I shut the PC down and then restart in safe mode.  This gives me the chance to remove any malicious programmes, run virus scans or carry out a system restore.  In safe mode not every programme runs, the PC works but not fully.  The graphics are different, a bit blocky and a lot of drivers will not run.  This protects your PC from further harm so you can carry out the necessary diagnostics and repairs.

That is how I have lived since the diagnosis.  I have not been fully participating in life.  I have withheld some aspects of myself.  I could not allow myself to relax (I am pretty bad at relaxing at the best of times) or even enjoy myself.  I have not allowed myself to think of the future.  For the sake of self preservation I have lived a day at a time and stubbornly resisted thinking ahead.  Everything has been moment by moment.  Honestly I think that is the best way but I took it to extremes, I wouldn’t even watch the weather forecast.  Nothing is promised, not even the weather.

So the results of yesterday’s scan, for me, were a watershed.  I hoped that after them I could start to wake up and restart in a normal mode.  If the results were good I could maybe get back to normality, return to work and start to move towards the goals I had envisaged when I lost my leg.  If the results were bad I could prepare my body as best I could for the next round of chemo and hunker down to weather the storm.  The result of “no change” felt like a bit of a non result and left me wondering what to do next.  I am a little scared to come off safe mode just in case I allow something in.  Going back to the analogy of the PC I would not restart in normal mode unless I was sure I had removed the virus or programme that was causing the problem.  That would be potentially damaging to my PC.  In the same way do I start living my life more fully or is that psychologically and physically risky?  I am not a natural risk taker.  I am cautious (when sober) and loathe to do anything without thinking my way 360 degrees around it first.

On reflection I don’t think it’s going to make much difference to the tumours whether I wait, still and expectant like a garden gnome or just get on with other things, pausing to take chemo on board when required.  The cancer is probably ambivalent to my physical bearing and will do what it will do regardless.  I added “probably” to that last sentence because part of me views cancer as my opponent and I should keep my chin tucked and guard held high in case of a sucker punch.  This is childish thinking really.  So I lay awake most of last night thinking about the implications of this neutral result and what to do next.

I’d like to give something back while I can, maybe do some sponsored event, preferably something physical.  I’m getting stronger and better able to use my crutches with one leg.  I’d like to push that ability.  I need to think about it and come up with a plan.  I also started looking at holiday destinations abroad.  Countries I have never been to and would like to visit.  I’ve arranged a date to talk about a return to work, so that’s taken care of.  As for everything else, I need to set aside some time and write a list.  Not a bucket list because that is synonymous with dying.  It will be a list of aspirations that I can work towards.  Watch this space…

I won’t back down.

I want to write about an old friend today.  Yesterday I went to visit this old friend and former work colleague in hospital.  I had been chatting with him a little online and the opportunity arose for me to visit him so I took it.

He has cancer – I don’t know what flavour it is – I don’t tend to pay much attention to labels.  Cancer is a horrible disease and it kills people, that’s enough.  I remember when he was diagnosed that it was a particularly nasty version that had no out and out cure.  So we’re in the same boat.  It’s a boat neither of us chose but we’re stuck with it.  I remember we talked about it when he was first diagnosed, because I’d had cancer in the past and sometimes you want to talk to someone who’s been there, maybe they can help guide you and give you pointers.

What sets him apart is his attitude.  Right now the fates have conspired to deliver a horrible mix of health problems all at once.  A twisted bowel, gallstones, problems with his liver and the pain of his stomach rubbing against a mesh, previously placed there to hold everything in.  He hasn’t eaten in over a week. He has a tube down his nose to drain fluid from his stomach and he is sat up in a vinyl covered hospital chair grinning from ear to ear.  I didn’t stay long, I hate being visited in hospital and I am not a fan of being a visitor either.  I cannot abide the stilted conversations and the not knowing where to look but in that fifteen minutes we had a good chat about his health problems, about work, leisure and future plans.

This guy is a tank.  Whatever is thrown at him he just keeps on rolling forward.  He is a tank with a smile.  He is always smiling and looks at the positive side of life.  Many people might be crushed by having a diagnosis of cancer, this guy just refocussed his eyes on what was important to him and went for them with good cheer.  I have seen him first hand as he throws himself into work, encouraging others, always laughing and cracking jokes.  When he is well enough he keeps himself fit and is always looking for new challenges.  He is enthusiastic about his hobbies and most of all he likes to spend good quality time with those he loves.  Don’t tell him but I’m in awe of him.

Right now I am stuck in a rut.  I am waiting to hear from specialists about these tumours.  Have they grown?  Have new ones appeared?  After 12 weeks of treatment, is there a successful outcome?  Will I be well enough to return to work soon or do I need more treatment?  I feel like I cannot move until I hear and I am numb because I have packed all my feelings in a box, not to be opened until I have some concrete news.

We talked about a classic car event taking place soon.  I am not a car enthusiast.  I like having one.  I like the freedom they give me.  I like the look of some sports cars and I am nostalgic for the cars I used to see on the roads in my youth.  He has a passion for old sports cars and in the past has bought them, fixed mechanical problems, tinkered under the bonnet, made repairs and polished them to a mirror like shine.  There is a classic car meet in a couple of weeks and he is desperate to go.  I love his attitude, not for cars but for life.  He wants to go, he wants to be let of the leash.  The hospital bed is like a thether holding him back.  Cancer is like a restraint, stopping him from fully participating.  It doesn’t though.  He refuses to allow cancer or the other resulting health problems to hold him down.  I admire that strength of character.

We talked a little about attitude and he said that if you smile and are positive and nice to other people they will be nice back to you.  He said this whilst smiling.  It’s a winning smile.  I have seen him win over people at work, people who were unhappy and ready to complain.  I have seen that winning smile across a table after beating me at pool or at an arm wrestle.  He wins you over.  He wins at life.  I am encouraged by his attitude.

We differ in many ways.  I am by nature a grouch.  He is mostly cheerful and looks for the positive in every situation.  We have different political opinions, a source of lively debate over the years.  He has lots of interests that he throws himself into.  I have never been a man of hobbies, I get bored too quickly or can’t sustain the interest in things for long enough. He smiles a lot.  My default expression is a frown, I have the lines to prove it.  I think we do have one thing in common though, and that’s a cast iron determination.  We both want to win, neither of us will back down from a challenge.  So I take some comfort in that.  I know he won’t give in and will always strive to live his life to the full.   I hope to see him at the car show sat alongside his wife, on a picnic blanket, talking about some technical car nonsense to another petrol head.  I may even smile.

I saw this quote this morning by someone called Lisa Copen.  I had a quick Google and she is a christian writer and runs some organisation called Rest Ministries.  I like to know who I am quoting, just in case.  It rings true with me this morning.

‘At some point after diagnosis, in our cycle of grief, we stop looking for a cure and begin to advocate “being as well as possible” for as long as possible.  It stops being about delaying life until we are cured, but enjoying the moment.’ – Lisa Copen.

 

 

 

Not fade away.

I have woken up with the blues.  After many years struggling with depression, the synapses have worn familiar paths into my brain.  My brain is used to doing depressed, so it keeps on doing it.  On Tuesday and yesterday this week I started planning a new diet in my quest to kill cancer.  Last week I started getting out of this wheelchair more and building my stamina, walking a little further each day on crutches.  I was making positive steps.  I know from personal experience that if I keep moving forwards and make positive steps it fends of depressed feelings, or at least suppresses some of the effects.  Therefore the best thing for me to do today is think of some more positive things I can do and start to do them.  I feel tired though.  A little cough has started.  I hope that it’s nothing but it puts feelings of doubt and concern in my mind and weighs me down.

I started to think about what a moaning, self obsessed person I have become.  Now I have this Angiosarcoma diagnosis I am like “Super sick”.  I am more sick than the average person therefore I don’t take anyone else’s health concerns or worries seriously.  I can justify that position too.  I can imagine most people would say;  “What am I moaning about my headache for, you’ve got lung cancer and you’re not moaning.”  I’d typically respond by saying something like “No, I feel fine most of the time, there’s nothing worse than a headache when you’re trying to concentrate.”  I’d say that but secretly, I’d think, “take a paracetamol and stop whinging”.  Because my Super-sickness gives me a special status.  I am now more worthy and valuable, because I have some horrible affliction most people are terrified of getting and I might drop dead at any moment.

Sometimes I find myself telling people I have cancer, people I hardly know and have no relationship with.  There really is no need for me to share this personal information.  I might never see them again.  Why am I doing it?  I don’t want their pity.  What’s that all about?  I don’t really believe that other people have no right to complain about their ailments around me.  I don’t think that I should be afforded special treatment because of a diagnosis or that everyone should be aware of that diagnosis either.

Maybe that last bit is not entirely true.  Why do I write this blog?  My usual answer is because I find it cathartic.  That’s very true.  I find it helps me to process my feelings and just ‘gets things off my chest’, so to speak.  However if I am totally honest with myself – which I try to be – I also want people to be aware of me and my story.  I have a fear that I will just shrink from sight and disappear and nobody will care or even be aware that I was here.

This morning an old school photo popped up on my timeline.  I had added it five years ago and it was from a junior school class in 1980.  I must have been about 6 years old.  What a wonderful time.  This was before any illness more pernicious than mumps entered my life.  As well as making me feel nostalgic it also had another effect.  In the photo I was stood next to a great childhood friend called Richard.  When we were little I would go to his house to play and I remember losing a shoe at his birthday party once.  As we grew up we didn’t stay close friends but I always said hi and talked with him.  Tragically he died in a motorcycle accident when still a young man, in his twenties.  I remember the day I found out.  I remember thinking that time should stop for a while and we ought to pay our respects to him.  It shocked me that he was no longer around.  Later I would sit on the park bench that memorialised him overlooking the harbour in Fishguard.  I remember telling my eldest daughter who he was and why the bench was there. I haven’t thought about him much lately.  He was a very gregarious and popular man but I don’t think about him much any more.  I am an introverted, quiet person.  Who will think of me when I’m not here?   So I suppose I want people to read this blog and think of me for just a couple of minutes, so I can feel as though I am making some small impression.  It was the same when Brian, who I was in hospital with, died recently.  He was a bit of a loner, by his own admission and I wanted people to know who he was.

I’m not dead yet and I have no intention of dying any time soon.  I’m waiting for a green light to get on with my life.  While I’m stuck here in this pit stop I want to make a small mark and this blog lets me feel as though I am reaching out to other people.  I am in two minds about posting this blog because I think people will think I’m a right miserable toad.  I am but it’s OK really, this is normal for me.  I’m used to feeling low.  I’m used to my brain overthinking things and philosophizing.  It’s all part of the process.  Now I’ve written it down I’m going to make a salad for my lunch and feel good about my healthy choice.  Some new diet supplements have just arrived on the post too.  I’ll leave you with a classic song.