What is Hope?

There is this 4 letter word we all use so much, we use it everyday,
but what does it mean this four letter word that means so very much?

Is hope a dream, an unobtainable star that taunts us from afar? or is it within our reach, something we can almost touch.
We hope for peace, that elusive cure, peace on earth and so very much more,

Does hope trickle through our fingers like the white tropical sand,
Or is it as solid as the granite that typifies the Cornish land.
Is hope as liquid as the warm tropical sea?
Or is hope like an iceberg to the Titanic,
A never event, beyond our wildest fears.

Maybe hope is like a comforter to the young,
We need to see it, embrace it, to keep us from harm,
but I think hope is like the recurring dream, and somehow beyond our reach,

Yet without hope this 4 letter word, where do we hang our dreams.
Our aspirations, our desires, our reason for carrying on?
So friends keep hope within your reach don`t ever let it go,
because believe me, someday, somehow, somewhere,
 our hopes our dreams our prayers will become just one.

TJB 26/06/2017 (C)

A Dawn walk in the woods

Fewer blessings can there be than walking the woods at dawn,
The air is fresh,and clean,
Mother nature has blessed us all, with another brand new morn.

The dawn chorus welcomes as we walk beneath the trees,
the earth smells clean and fresh,
The tree tops they are filled with song, carried on the breeze.

As the sunlight filters the wood, the night life slips away,
The badgers and the foxes too, head back into their den.
They hunted well, their cubs await, to sleep away the day.

The cry of the crows flying past, on ragged wings so high,
I spy the first spring bluebells too, looking for the sun,
Soon they will adorn the woods,a carpet oh so blue,
The beauty of nature, a miracle to my eye.

The sun so fresh, highlights the trees on high,
like a blazing beacon that heralds the dawn
as the world wakes from its sleep.
a new day, a new dawn, a new start has begun.

TJB 08/04/2017 (c)

The thing about helping others
is that it`s a selfless act,
no need for please or thank you,
you care and that`s a fact.

When you offer to help someone,
no matter how near how far,
you offer the hand of friendship,
No matter what age you are.

We all have friends in facebook
most we never shall meet,
separated by oceans
or even across the street.

But still we say `good morning`
hello, and have a good day,
to me thats an act of friendship
It helps us on our way.

So offer that hand of friendship
to someone new each day.
you never know, that little act
might just make someones day.

TJB 4/4/17 (c)

A poem about  our Parkinsons group

Why do I love this group?
So, why do I love this group? the answer is easy,
Why, It`s the fantasticle group members of course.
from all over the world they find us then ask to join,
most then stay with us, we hope with no remorse.

The admin team, well we are a proper mixed crew,
we have Ellis the menace who loves the group meets,
loves pasties and cream.a true friend of mine
we have a good laugh, though we can disagree,
to the group she is loyal as most of us will see.

And then we have Paula,with the creative bent,
she loves baking cakes, and is the group socialite,
she is a loyal friend, and a good team player,
cross her at your peril, and to Coventry you are sent.

And we have `S `what can I say, she is cool.
The methodical one, not much gets past her.
a wise head on those shoulders, a scientific head.
She gives excellent help for those that ask her,
a close friend of mine, we often talk a great deal
good advice she will offer, but will suffer no fools!

And now we have Russ, the new kid on the block,
he is finding his way, being admin is not that easy.
The young onset big `P` that`s his great motivation.
His determination and vigor should carry him far,
fighting for justice that the young onset deserve.
I think old established opinions are in for a shock!

Who else is there in the admin team, oh yes it`s me,
well, what can I say, that hasn`t been said?
I will fight for group members, you are ALL my friends.
So proud of this forum, and the way it has grown,
we have a good laugh, alongside all the woes
this group is an outlet from our daily grind you see.

So there you go, I have been on a roll,
this poem is nothing like I intended it to be!
It was going to be about you the members you see,
but, another day another rhyme 2 hours this has taken.
Just to say you guys all rock and the other admins too,
It`s given me a focus, taken over my life,
We may have the Big P, but he doesn`t have us,
together we will fight, we will shout, and we will cuss!
TJB 24/3/17 (c)

A poem

1. When you're alone with nobody to share,
   It`s so easy to assume there is no one to care.
   These long dark nights they drag on and on,
   these are the times you really need some one to share.
2. ...
3. Someone to share those feelings of fear and dread,
   those horrid dark thoughts going round in your head.
   you yearn the power of the comforting touch,
   those soothing few words than can mean so much.
4. You recall those days of ambitions and power
   that huge salary, foreign holidays and status,
   the happy family, the dreams and wishes for your kids
   Now those dreams wash away like soap suds in the shower.
5. Away they run go those ambitions and dreams,
   an endless trickle of hope, disappearing down the drain,
   Parkinson`s you son of a bitch, you deprived me of this,
   now pills replace those dreams and ambitions,
   and dependence and despondence alongside the pain.
6. The glimmer of hope that some day that cure will come
   a magical pill that may reverse the damage and hurt.
   We live in hope of that elusive pain free dawn,
   to ditch the pills and fear in place of happiness and fun.
7. So I have made it to dawn and I`ve taken the pills
   I have logged into our group and said a cheerful good morning
   We are an elite community of strength and hope
   we laugh, we joke, we share good times and bad,
8. You know what? you guys give me that strength, that hope,
   the determination to keep going towards that elusive cure.
   It may not be in our lifetime but we will have left our mark.
   I just know that being among you - I CAN COPE!!
9. TJB 18/03/17 (c)

Spring is in the air

Well, we are over half-way through February now and spring is certainly in the air here in Cornwall UK. It`s very mild, perhaps too mild and no doubt mother nature will give us a reminder she is in control before the spring is out!

First some good news (touch wood) regarding the pancreatic cancer. The latest blood test showed a slight increase in the markers they use but still within normal parameters. Dare I hope I may be in the 5% that reach 5 years post whipple surgery with no sign of re-occurrence? I know its a very thin line I am walking we have all heard of the famous names we have lost to this cruel disease over the past couple of years, but the fact is I am still walking, camera in hand, with my 2 Jack Russell's  (the hooligans) in tow!!

I have mentioned before how I am convinced these two guys have helped in my recovery as they still need their walks each day so the need is there for me to get motivated and get out in the fresh air. We have a choice of locations from the beach(es) to the woods, to the cliff path, we are so fortunate to have this on our doorstep.A link to my flickr photo site, https://www.flickr.com/photos/tjkernow/with/7840140738/  it is under a bit of a spring clean at the moment, I have taken out over 100 older pics so I can refresh it before I add some newer photos.

As to where I am with this Parkinson`s disease, well that`s a different story. I realised recently just how different my mobility really is compared to just a year ago. While I remain independent and as active as this body of mine allows, I realise I shuffle a lot more after sitting for a while, making me aware of health and safety ie catching my foot in the rug which could trip me up leading to a fall. I also need to be aware of turning too quickly as that can unbalance me, sometimes I feel like a younger man in the body of an older person. I notice it too when I am out with the dogs, I get so far then suddenly it feels as if I am walking in thick mud and it becomes an effort to keep going, so consequently I am more careful where I go.
Another area of deterioration, is turning over in bed.   I must try and find out what is available to help me, I find I sleep more on my right side, and when I try and turn over I get an horrendous gripping pain in my right hand side this is due I am told to the cancer surgery and the pain is caused by scar tissue. I don`t want to reach the stage where due to pain, I am unable to get myself out of bed! I do have a pendant I wear around my neck so it links to  lifeline, but I would be so embarrassed to have to contact them for assistance because I was stuck in bed!!

Our parkinsons support group continues to go from strength to strength,
 https://www.facebook.com/groups/490857204425819/ If nothing else we are making lifelong friends with people who truly understand the bad days and folk can have a good moan if they wish in a safe environment. We recently had a saying posted in the group, "I love my laptop, all my friends are in there" how true this is and one major benefit of the internet must be how it shrinks the world and we can communicate in real time with parky friends worldwide.

I am waiting for an appointment with my new neurologist who specialises in parkinsons, and I hope will have a greater understanding of how this disease is affecting me and perhaps change my medication accordingly.  Well, this has been a brief update, do please look into our facebook group_ THE PARKINSON`S SUPPORT CHAT AND SOCIAL COMMUNITY, we are now 1,000 members plus and still growing.

Take good care of yourselves and thanks for reading this little blog.

Tony.

Into 2017 What lies ahead?

 I was greatly saddened today by the untimely death of British actor John Hurt from pancreatic cancer. It brings it home that this nasty cancer makes no distinction between famous or infamous, rich or poor, deserving or undeserving, and shows with a slap, the fragility of life.

It has a poor survival rate and days like today emphasis the need to give thanks for our families and friends, and how even though I am over 2 years post surgery, I cannot be complacent. I go for my blood tests on Monday,  and see my oncologist in a couple of weeks to see if my blood marker levels are still low or increasing. I am often asked how I feel, and the answer is still in some discomfort especially on my right side, and I am having increasing episodes of intense nausea and sickness, but I do not know if this is cancer or Parkinson  related or a mixture of both!

I have managed to change my Parkinson consultant to one who is a Parkinson specialist so I look forward to meeting her in due course, it means a slightly longer travel to appointments but I am sure my care will be improved as a consequence.This demonstrates how we are ultimately responsible for our care and if  we are unhappy with the care from our consultant then do something about it, be proactive and take charge of our care otherwise we get lost in the system.

Our Parkinson's nurses in Cornwall, are far easier to contact and while they do cover a large work load, they are reactive and only a phone call away. I have seen a marked deterioration in my movement due to the Parkinson`s Disease (PD) it takes me a good hour to start walking normally (for me) in the mornings, strangely enough not as bad if I have had to sleep in my reclining chair rather than my bed. I tend to walk with a shuffling gait first thing and a lot of lower back pain, but once I take the Madopar and Tramadol, followed by the Rotigotine transdermal patches which has just been increased to 8 mg (2 x 4 mg) to see if my tremor in my left side settles down a bit. It is amazing how my tremor increases even talking on the phone or in any stressful situation. Distraction techniques tend to work when this happens, it may be headphones and music or just a brief dog walk which settles things down.

Luckily my love of going out in the car to the coast path, beach or woods with the hooligans (Max and Perdy the Jack Russell's) is not too badly curtailed though I need to be extra vigilant as I have had a couple of potentially nasty tumbles whilst out and about so not a good scenario if I were on the coast path when it happens!!

I am continuing with my book, based on Cornish myth and to this end as I am having troubles typing at times as my fingers keep missing their designated key while typing so as a consequence I am spending as much time making corrections as telling a story! I have invested in some speech recognition software (Dragon v15) which is now installed and working to an extent. It takes time to `tame the dragon` so it gets used to my style and my pronunciations, never mind my Cornish accent, so I do get some rather interesting interpretations of what I spoke going onto the laptop scree at times!! However I persevere and no doubt next time we meet in this blog I will be singing its praises..... honest I will!

Before I close, some of you will know of my involvement with a fascinating facebook Parkinsons support group , The Parkinson`s Support, Chat, and Social Community. ( https://www.facebook.com/groups/490857204425819/ )  Our membership is now in the 900 mark and growing. We are having a weekend get together in June this year 17th /18th and we we be doing a sponsored walk up Snowdonia raising funds for Parkinsons UK  www.parkinsons.org.uk/ Some will get to the top and some will only manage a shorter distance, but we are giving it a good try.

If you feel you could support us, please use this just giving link https://www.justgiving.com/fundraising/Michelle-Ellis7?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=Michelle-Ellis7&utm_campaign=pfp-share  copy and paste into your browser.

 Michelle Ellis is a group admin and we decided to use this one page for just giving donations. All th money raised plus the gift aiding will benefit Parkinsons UK and the support and research they provide.

Well, I need to get the Sunday roast completed to feed young Gemma so I will sign off for today, Thanks for taking the time to peek into my life with Parkinsons and Cancer, please share this blog with anyone you think may be interested, and thank you from the heart for your support.