Without You I Would Be Lost And Have To Buy A Sat Nav

I met my Nurse Counsellor Lead for the first time this week to look at how we can best manage this next 6 months or so. It was a pleasant enough meeting, where boundaries and expectations were set, and of course the one real good thing is it cuts out the GP, who those of you who know me will know, I detested. They report straight back to the Consultant , which is good, as she is based over an hour away.

However, hours and hours later, I am in floods of tears and having a complete meltdown on twitter, something I try and avoid at all costs. A couple of conversations with people who were trying to help, actually only made things worse for me, and I could not cope with it all.

Out came good old You Tube and a string of quite cheesy but satisfying 80's tunes. I ended up like this

This was my default position as a child and will hopefully explain why I so admire and support http://m.evethomas.co.uk/-OneVoice-Never-Silenced.html 

It is the position that served me well then and returns like an old friend every now and again, when my body and mind cannot take any more. It is not something I seek, as those friends that know me will tell you. I prefer, to be open, honest and as informative as I possibly can be about having terminal cancer. However, every now and again, my little boy returns to me and without him, I would be lost without any hope of finding my way..

Having this meeting to plan your last 6 months and being told that you have pushed someone away and also you did the same with your daughter because of a need to control, certainly allowed my boy to return. In truth though, the person who said it was right, I do push away because I fear having anyone close and hurting them with no intent. Selfish of me, I know.

But when all seems lost, my little boy returns and shares those moments with me, until I feel ready to lift my head and face the reality.

Apologies for anyone who might read this and be offended, there is no intent to offend.

No apologies for slipping between 1st, 2nd and 3rd person as it was intended.

David xxx

Outside I'm Smiling

Good morning everyone, hope you all have a lovely day. Isn't the weather gorgeous again. Listen to those birds singing.  Hey, it's holiday time.  However I start my day, it is always with a smile for everyone and I have to say it is my intention to carry on that positive mood throughout the day.

Sometimes though, things get the better of me. Take today, Monday. Started off all positive, walked down to the Doctor's for my bloods and prescription. Nurse was late in, so had to sit round and wait. Not unusual but when it is a fasting blood and when I have not had a coffee to kick start me, every extra minute is vital.  Bloods then taken from the back of my hand, as it is the only place guaranteed to catch a vein. Back out to reception to find my least favourite receptionist. She really hates me and does little to hide the fact, so she was in her element telling me that my prescription was not ready and I would have to come back in the afternoon. Yay, a nice 15 minute walk each way in the blazing sun on the hottest day of the year.

Mood well and truly tested and then the next and real upset of the day. I cannot do arguments, the stress level effects my potassium and before I know it, I am out of it for days, if I am lucky. So to have an argument or upset with the one person you never want to was not a good thing :(   Knowing that it is me who will lose out from it does not help either. On top of that, also lost another friend because of it :((

Walk back down to doctors, thankfully different receptionist who had my prescription waiting for me. 10 minute walk in same said blazing sun to pharmacy only to find out he does not have one of my medications in. Have to get that one tomorrow, hope I survive.

Back to flat, dripping and into a cool shower. Out and dressed just in time to tweet with my working friends and feel guilty that at times, I don't have the energy to put the kettle on, never mind think of working, although I desperately want to.

Oh and then we have the new Coronation Street story, which I won't watch.

Heat and not quite the right amount of meds then leave me feeling rather flat and deflated for rest of the evening,

But then, we have have a Royal baby. Time to smile and join in.  Night everyone, hope we all have lovely dreams and sleep well :)

Blessed

It may sound a little daft but living with terminal illness is something which has made me realise how blessed I really am. It has allowed my mind, my heart, my soul to understand what is actually important in life and has enabled me to view friends situations with far more clarity and empathy.

Everyone has their own problems and issues to deal with and the last 6 months has helped me look at things with a complete new perspective. It does not matter what their problems may be, it is now so much easier for me to say, hey, I am here for you if you need me. Yes, I have worked mainly in a care environment, in child protection for most of my adult life but at the end of the day, it was a job. Now it is a personal choice to be there for people and in return, I know certain people are there for me, for which I am blessed.

I can say and do things now with a freedom that was bereft from my previous 45 years and it is liberating. Knowing something that you do can have a positive effect or at least a small impact is in itself a lesson to me as to why I was here in the first place.

I know, at some point, I have one big thing to do but until then, I am happy to play my part, without any thought other than that I am finding the world a better place for getting to know people can care for each other.

David
xxx

Growing Arms & Legs

Very little seems to be written or available on the emotional frailty of terminal illness and maybe for a good reason. There is no book, or professional out there that could help.

I try my best to put on a brave face with regards my prognosis. I look for things in each day that warm my heart and I can then tell everyone how much I appreciate it, and I do. A bird singing, a child smiling, a couple walking hand in hand, a lovely piece of countryside. Such simple things that we do all take for granted.

However, no matter how hard I try, there are times in everyday when  the whole situation grabs me by the throat and scares the living daylights out of me. It is in those times that I believe that I am better off alone, almost wallowing in pity (which is something I never set out the day with).

How can I seriously make new friends when I know my time is limited and the last thing you want to do is burden anyone new with my darker moments. I find myself asking the question why on earth that person would want to develop a friendship with me, what benefits are there for them? And really, do I want to allow someone else in to eventually mourn me or to witness suffering?

Sounds very harsh I know, as the majority of people want to become friends because they like you but at times of despair, you do not see that and before you know it, you have built up another wall before their eyes.

Then, what about the friends you already have? Again, whilst in a positive mood, they are vital, they allow you to talk about the nice things, the things you appreciate and they share their good things with you.  However, when you are down, this is where things grow arms and legs and you start wondering whether the whole situation is too much for them. I have been known to stay awake all night, worrying about something that has been said, or not said or when something has not happened quite the way I have had it in my mind.

That puts so much strain on relationships, unfair on both parties and when I  am not down,  I know that there was nothing in it but my own fragile mind that has allowed the doubts to magnify.

I hope that anyone reading this will see how hard it is to make new friends or indeed keep the relationships you have, not because I do not want people there, as I could not survive without it, but because I do not want to share the burden at times as i am fearful of yet more loss.

David xxx

Don't Be An Ostrich

We all have special dates in our lives and today is mine. Three years ago today, I received a call back to my then GP, after being for scans the day before as I had pains and sickness. To get a next day call in is never good news, especially at 8.30 in the morning. I turned my car around, as I was on my way to work and did as the doctor had told me and went to see her straight away.

Not knowing what to expect but knowing it would not be good, I sat in a bit of a daze in the waiting room. She came out to greet me personally, rather than being called in and asked if I had anyone that could be with me? Now the panic really kicked in, as I explained that no, it was just me.
She was very good and came straight to the point and told me that the scan had picked up a tumour on my pancreas but it was not big, in it's very early stages and with treatments and probably a stent, it could be managed. I thanked her and nodded when she said that she would arrange everything. I went out to the car park, lit a cigarette and my only thoughts were how I was going to tell people.

I could not face work, so wandered around the antique shops in Lechlade (Cotswolds) and bought myself a Celtic Ring that jumped out at me. I sat in a tea room and just gazed into space, managed to drive home, without even remembering doing so and then I became an OSTRICH.
I denied to myself that there was anything wrong, and as I did not know about what a pancreas did, convinced myself that it would heal naturally.

Over the next few months, I ignored letters, phone calls and even a knock on the door from my doctor. I told nobody and just let myself carry on until the pain got so bad that I collapsed and ended up in hospital. The Doctor in A&E looked at me in disbelief when I told him what the problem was, put me on a drip and told me he did not think so, as I was too young. It was several hours later when they had got hold of my notes that the shame faced doctor came back and apologised. I was booked in with the specialist straight away and a course of treatment agreed. After 3 weeks of aggressive treatment, I felt much better and low and behold became an OSTRICH again.

Oh, how I wish now that I had continued with the treatment, listened to the experts and confided.
I have now fully accepted my treatments, interventions and prognosis but a couple of years too late.
Moral of my story, Don't be an OSTRICH, it does not go away.