I have some fabulous news regarding my cancer, I am officially in remission yay!
Stats show that many more are surviving the scary big C. Who knows maybe one day one pill will fit all cancers.
As far as pancreatic cancer, my nemesis, to reach 2 years post diagnosis is an achievement, to be where I am today, 4 years post diagnosis, and in remission is a small miracle! Normally pancreatic isn’t normally diagnosed until it’s too late to help, I guess it’s sneaky, venamous and a silent killer.
So, why am I blessed to be in the 2% that gets to remission? I guess it’s a numbers game, pure chance, I had the right suite of cards in my hand. As my son says I am bloody stubborn, I just won’t lie down and give in. In this case thank goodness for being stubborn!
However, I am strongly aware that my Facebook friends have played a big part in this also, the messages of support urging me on through the dark days all helped, as did the love and support from those close to me.. thank you each and everyone of you.
As to the Parkinson’s, that has stayed relatively stable over the summer, still have sleepless nights, dystonia (cramps) and I do tend to get a little over anxious some days, but all in all the meds are doing their job, as long as I remember to take them on time!
One new development is that I know have a date December(4th) for my total knee replacement surgery, it has been rather painful over the summer out walking the hooligans in the woods and exploring bridleways around us, but I have been determined to keep mobile to keep my leg muscles strong as this can only help my recovery.
Well this has been a quick catch up, I intend to post at least monthly in the future, and whilst recovering from my knee surgery I am determined to use this time to crack on with my book!
Please feel free to share this post and if anyone wishes to contact me please do so tonybaxter54@outlook.com
Thank you for taking the time to get a little insight in my life, bless you all.
Tony.
Saturday, 27 October 2018
Friday, 1 June 2018
Where I am now June 1st 2018
It has been some time since my last post, I am finding life is getting somewhat overwhelming, and I seem to jump from crisis into crisis instead of being methodical and organised!
I am now waiting for a date for a total knee replacement on top of cancer and Parkinsons, am I just a tough old sod who won't lie down or am I tough and have a spirit of steel that will not give in? I think I swing from one to the other.
Mind you, I have moved house at long last and we are now in a nice ground floor flat in an idyllic Cornish village with loads of bridleways and footpaths and close to the Pentewan valley nature trail where I take the hooligans a lot. Gemma has settled in well and she comes back on a Friday like a whirlwind! Max the hooligan has also settled in well, though Perdy seems to be taking much longer, maybe it's her age or perhaps she just doesn't like change.
So, if you are following this blog you may have Parkinson`s or care for someone with PD, so where am I now since my last instalment? Well, my voice is getting quieter, a common symptom, I also recognise I get very flustered talking to people on the phone, something that was never a problem in the past. I had to speak to an advisor from my building society today, and I now make sure they know about the PD, almost using it as an excuse for my jumbled speech, then I feel they are patronising me which I hate lol I just cannot win! I find myself avoiding large crowds, I hate it, almost claustrophobic. I am happiest out with my dogs in the woods, although it hurts my knee, I don`t have to put a social mask on. Am I getting a loner? maybe so, I recognise that isn`t a good thing, so maybe that`s good too. I wish James and Christy lived a bit closer, but that`s something I cannot change.
My medication regime seems to be getting larger as time goes on, I see this as a double-edged sword though. I feel the PD is fairly well controlled by the meds, but some of you will know I have Gastric Dumping Syndrome which seems to be tied in with the cancer surgery, basically, I slowly get a build up of gastric bile which then has to come out, hence `dumping`. It is very unpleasant and knocks me back for a day. I am starting to recognise the symptoms now, the bile burning the back of my throat, my ears start screaming as in tinnitus and I get very withdrawn and sleepy. Once it is evacuated my body, I need to sleep.
It`s questionable if it's a diabetic or pre-diabetic but I am trying to modify my choice of food and make sensible choices avoiding too much sugars etc. My Daughter In Law has sent me a book; The 8-week blood sugar diet, so I am trying to adopt some of the advice in there. If it is to do with the cancer surgery, I am concerned about that too, I seem to be in remission at the moment, but aware Pancreatic cancer is capable of some nasty surprises.
I do wonder though if the increased meds and all that alkaline etc in my system will aggravate the dumping syndrome or not. Mind you, I know a lot of people with PD suffer from nausea too, so is my diagnosis right or wrong?
Going back to the PD, and my online support group
https://www.facebook.com/groups/174448966439575/ Parkinsons Support and Friendship UK,
I see daily the negative effect PD has on my friends. Depression and anxiety is high among group members, from slight depression and worry to full-blown anxiety which can be so destructive.
https://www.parkinsons.org.uk/information-and-support/anxiety
It is widely recognised and acknowledged, and from sufferers family perspective must be so cruel.
So, as to the immediate future, I need to get my knee replacement done so I can start to recover, but talking to the medical secretary it ain't gonna be soon. Treliske put a stop on elective surgery in the spring to save money and to help the very busy A&E department. They still have not caught up so she suggests it will be months not weeks before I get a date. Not helping this is the fact I tested MRSA-positive so can only have the surgery in Treliske Hospital so a long wait is still ahead I fear.
Well, this has been a bit of a catch-up, thanks for reading, do feel free to share this blog with others.
I will post an update very soon and maybe some more poetry.... you have been warned lol
Take care one and all and be nice to each other.
I am now waiting for a date for a total knee replacement on top of cancer and Parkinsons, am I just a tough old sod who won't lie down or am I tough and have a spirit of steel that will not give in? I think I swing from one to the other.
Mind you, I have moved house at long last and we are now in a nice ground floor flat in an idyllic Cornish village with loads of bridleways and footpaths and close to the Pentewan valley nature trail where I take the hooligans a lot. Gemma has settled in well and she comes back on a Friday like a whirlwind! Max the hooligan has also settled in well, though Perdy seems to be taking much longer, maybe it's her age or perhaps she just doesn't like change.
So, if you are following this blog you may have Parkinson`s or care for someone with PD, so where am I now since my last instalment? Well, my voice is getting quieter, a common symptom, I also recognise I get very flustered talking to people on the phone, something that was never a problem in the past. I had to speak to an advisor from my building society today, and I now make sure they know about the PD, almost using it as an excuse for my jumbled speech, then I feel they are patronising me which I hate lol I just cannot win! I find myself avoiding large crowds, I hate it, almost claustrophobic. I am happiest out with my dogs in the woods, although it hurts my knee, I don`t have to put a social mask on. Am I getting a loner? maybe so, I recognise that isn`t a good thing, so maybe that`s good too. I wish James and Christy lived a bit closer, but that`s something I cannot change.
My medication regime seems to be getting larger as time goes on, I see this as a double-edged sword though. I feel the PD is fairly well controlled by the meds, but some of you will know I have Gastric Dumping Syndrome which seems to be tied in with the cancer surgery, basically, I slowly get a build up of gastric bile which then has to come out, hence `dumping`. It is very unpleasant and knocks me back for a day. I am starting to recognise the symptoms now, the bile burning the back of my throat, my ears start screaming as in tinnitus and I get very withdrawn and sleepy. Once it is evacuated my body, I need to sleep.
It`s questionable if it's a diabetic or pre-diabetic but I am trying to modify my choice of food and make sensible choices avoiding too much sugars etc. My Daughter In Law has sent me a book; The 8-week blood sugar diet, so I am trying to adopt some of the advice in there. If it is to do with the cancer surgery, I am concerned about that too, I seem to be in remission at the moment, but aware Pancreatic cancer is capable of some nasty surprises.
I do wonder though if the increased meds and all that alkaline etc in my system will aggravate the dumping syndrome or not. Mind you, I know a lot of people with PD suffer from nausea too, so is my diagnosis right or wrong?
Going back to the PD, and my online support group
https://www.facebook.com/groups/174448966439575/ Parkinsons Support and Friendship UK,
I see daily the negative effect PD has on my friends. Depression and anxiety is high among group members, from slight depression and worry to full-blown anxiety which can be so destructive.
https://www.parkinsons.org.uk/information-and-support/anxiety
It is widely recognised and acknowledged, and from sufferers family perspective must be so cruel.
So, as to the immediate future, I need to get my knee replacement done so I can start to recover, but talking to the medical secretary it ain't gonna be soon. Treliske put a stop on elective surgery in the spring to save money and to help the very busy A&E department. They still have not caught up so she suggests it will be months not weeks before I get a date. Not helping this is the fact I tested MRSA-positive so can only have the surgery in Treliske Hospital so a long wait is still ahead I fear.
Well, this has been a bit of a catch-up, thanks for reading, do feel free to share this blog with others.
I will post an update very soon and maybe some more poetry.... you have been warned lol
Take care one and all and be nice to each other.
Monday, 22 January 2018
I have lapsed in writing this little blog of mine,
don`t know why, but couldn`t find the time.
That`s an excuse I hear you loudly call,
Well yes, you are right I have no excuse at all.
So back in the saddle this blogger goes
to try and be more organised in my prose
That`s an excuse I hear you loudly call,
Well yes, you are right I have no excuse at all.
22/02/2028 (c)
Sunday, 25 June 2017
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?
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,
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.
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,
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.
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)
Saturday, 8 April 2017
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 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.
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 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.
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.
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)
Tuesday, 4 April 2017
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.
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.
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.
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.
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.
to someone new each day.
you never know, that little act
might just make someones day.
TJB 4/4/17 (c)
Saturday, 25 March 2017
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.
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.
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.
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!
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!
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.
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)
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)
Saturday, 18 March 2017
A poem
- 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. - ...
- 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. - 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. - 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. - 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. - 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, - 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!! - TJB 18/03/17 (c)
Friday, 24 February 2017
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.
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.
Sunday, 29 January 2017
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.
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.
Saturday, 31 December 2016
A Happy New Year One and All
Well here we are again, at the end of one year and the new year full of hopes and wishes only hours away. It has to be said that this time two years ago I could not confidently look forward to seeing 2017 as I had just had my cancer surgery and we all know the severity of pancreatic cancer survival rates. However this stubborn old sod is still here and kicking, but not taking life for granted as I may have done a few years ago. A walk on the beach with the dogs is a fresh experience now every time I manage to get there. I take them to the woods and stand there and listen to the sounds of nature and its wonderful.
I am of course fighting Parkinsons disease also which brings its own challenges on a daily basis., You will know I am I am heavily involved in the most wonderful Parkinsons support group which joined in its infancy, and the then owner passed the mantle to me to take it forward. With the help of my fellow admins we have done so and between us we have developed a Parkinsons support group which is supportive, caring, informative and we also have a laugh. This group, https://www.facebook.com/groups/490857204425819/ THE PARKINSON`S SUPPORT, CHAT AND SOCIAL COMMUNITY is now recognised as one of the best Parkinsons support groups on Facebook. I am convinced that it is our mix of serious day to day issues that we cover mixed with a social side is what gives us our edge. There are many such groups on facebook and each and every one does an excellent job which is offering support and a safe area to vent our frustrations and feelings about having Parkinsons, while offering support to carers also. As we say we are all walking the same road together so we find a group that best suits our needs.
As I look forward to 2017, as a family its going to be a busy one. my son gets married to the lovely Christy and I wish them many happy years of fun and adventures together, as we know the road has bumps but they have the strength and love to cope. My daughter who has a learning disability officially leaves home in the spring as part of her transition to semi independence, so I will need to adjust to a new life myself while still being involved in their lives, but I am finding this transition rather difficult and a bit scary if I am honest. Of course I have my 2 little Jack Russell's Max and Perdy to keep me company and they force me to get out walking on a daily basis otherwise I may be inclined to just stay in all the time!
So, I will continue this blog as I face my health demons, and I will continue to help our facebook Parkinsons group grow and develop. I have made lifelong friends in this group and for that I thank each and every one of you.
From my family, to yours we wish one and all a happy and healthy new year, full of happiness and the strength to face struggles with humility.
Tony. 31/12/2016
I am of course fighting Parkinsons disease also which brings its own challenges on a daily basis., You will know I am I am heavily involved in the most wonderful Parkinsons support group which joined in its infancy, and the then owner passed the mantle to me to take it forward. With the help of my fellow admins we have done so and between us we have developed a Parkinsons support group which is supportive, caring, informative and we also have a laugh. This group, https://www.facebook.com/groups/490857204425819/ THE PARKINSON`S SUPPORT, CHAT AND SOCIAL COMMUNITY is now recognised as one of the best Parkinsons support groups on Facebook. I am convinced that it is our mix of serious day to day issues that we cover mixed with a social side is what gives us our edge. There are many such groups on facebook and each and every one does an excellent job which is offering support and a safe area to vent our frustrations and feelings about having Parkinsons, while offering support to carers also. As we say we are all walking the same road together so we find a group that best suits our needs.
As I look forward to 2017, as a family its going to be a busy one. my son gets married to the lovely Christy and I wish them many happy years of fun and adventures together, as we know the road has bumps but they have the strength and love to cope. My daughter who has a learning disability officially leaves home in the spring as part of her transition to semi independence, so I will need to adjust to a new life myself while still being involved in their lives, but I am finding this transition rather difficult and a bit scary if I am honest. Of course I have my 2 little Jack Russell's Max and Perdy to keep me company and they force me to get out walking on a daily basis otherwise I may be inclined to just stay in all the time!
So, I will continue this blog as I face my health demons, and I will continue to help our facebook Parkinsons group grow and develop. I have made lifelong friends in this group and for that I thank each and every one of you.
From my family, to yours we wish one and all a happy and healthy new year, full of happiness and the strength to face struggles with humility.
Tony. 31/12/2016
Tuesday, 13 December 2016
Christmas is Looming.
Well, Christmas is almost with us again, and will be over and done with in a flash. Two years ago I had just been discharged form Derriiford hospital in Plymouth following my whipples procedure for pancreatic cancer.
In the months prior to the 7 hour operation which was literally a life saver for me, I could not look ahead to seeing another Christmas, but here we are the third Christmas since diagnosis and surgery and a difficult 6 months of chemotherapy. I fully appreciate how lucky I have been to survive the surgery, and at the last check with my oncologist although still experiencing some discomfort and pain, he could not see any evidence of cancer spread. I know the odds are against me however as pancreatic cancer is one of the more difficult to cure, and on paper the odds of making five years post surgery is around 2% so whilst I am in the middle of this `danger` period I continue to embrace life as much as possible within the constraints of my Parkinsons disease.
Having two major diseases is of course not unknown but it is extremely bad luck, and while the cancer and potential spread is never far from my mind, I have to deal with the day to day limitations of having Parkinsons. I can tell it is having a detrimental affect on me, as I suffer with insomnia I no longer except on very rare occasions manage a full nights sleep. As a rule I sleep for 3 hours max then I am wide awake. What tends to happen now is that I will get up and have a cup of tea and watch some tv or do some admin bits in the Facebook group I am proud to be a big part of The Parkinsons Chat and Support Group.
Being part of, and an admin in this group has without doubt given me a purpose and a focus and I have made many new friends all of which have Parkinsons or care for a family member with the disease. We attract a membership from all over the world, and while there are many similar groups on Facebook, one thing I believe makes us stand out is while we embrace, discuss and support issues around Parkinsons we also have a social side too where we can forget the drudgery of the disease and have a good laugh at and with each other. We greet each other in the morning and we notice if someone who is normally a regular has been quiet for while so we message them to check all is well.
I do believe that this group helps many others as well as myself as we are part of a family and we know the issues of living with this cruel disease so we can genuinely empathise and understand the pain, frustrations and the taking away of our independence we are all experiencing. The group members never fail to impress me, with their kindness, willingness to greet and support new members and to make them feel part of the community. Some join and leave again quickly to find one of the other groups to better suit their needs, and that is ok, at the end of the day we are all doing a good job and we walk the same road together.
Well my daughter Gemma is getting excited about Christmas and we look forward to seeing my son between Xmas and New Year for a few days. From my family to yours we wish everybody a very Happy Christmas and hope for the New Year. Our future may be a little uncertain but we battle on regardless. We have a saying, "We may have Parkinsons, but Parkinsons doesn`t have us" and long may that continue.
Thank you for reading this and feel free to share it with other people who may be interested.
Tony 13/12/2016
In the months prior to the 7 hour operation which was literally a life saver for me, I could not look ahead to seeing another Christmas, but here we are the third Christmas since diagnosis and surgery and a difficult 6 months of chemotherapy. I fully appreciate how lucky I have been to survive the surgery, and at the last check with my oncologist although still experiencing some discomfort and pain, he could not see any evidence of cancer spread. I know the odds are against me however as pancreatic cancer is one of the more difficult to cure, and on paper the odds of making five years post surgery is around 2% so whilst I am in the middle of this `danger` period I continue to embrace life as much as possible within the constraints of my Parkinsons disease.
Having two major diseases is of course not unknown but it is extremely bad luck, and while the cancer and potential spread is never far from my mind, I have to deal with the day to day limitations of having Parkinsons. I can tell it is having a detrimental affect on me, as I suffer with insomnia I no longer except on very rare occasions manage a full nights sleep. As a rule I sleep for 3 hours max then I am wide awake. What tends to happen now is that I will get up and have a cup of tea and watch some tv or do some admin bits in the Facebook group I am proud to be a big part of The Parkinsons Chat and Support Group.
Being part of, and an admin in this group has without doubt given me a purpose and a focus and I have made many new friends all of which have Parkinsons or care for a family member with the disease. We attract a membership from all over the world, and while there are many similar groups on Facebook, one thing I believe makes us stand out is while we embrace, discuss and support issues around Parkinsons we also have a social side too where we can forget the drudgery of the disease and have a good laugh at and with each other. We greet each other in the morning and we notice if someone who is normally a regular has been quiet for while so we message them to check all is well.
I do believe that this group helps many others as well as myself as we are part of a family and we know the issues of living with this cruel disease so we can genuinely empathise and understand the pain, frustrations and the taking away of our independence we are all experiencing. The group members never fail to impress me, with their kindness, willingness to greet and support new members and to make them feel part of the community. Some join and leave again quickly to find one of the other groups to better suit their needs, and that is ok, at the end of the day we are all doing a good job and we walk the same road together.
Well my daughter Gemma is getting excited about Christmas and we look forward to seeing my son between Xmas and New Year for a few days. From my family to yours we wish everybody a very Happy Christmas and hope for the New Year. Our future may be a little uncertain but we battle on regardless. We have a saying, "We may have Parkinsons, but Parkinsons doesn`t have us" and long may that continue.
Thank you for reading this and feel free to share it with other people who may be interested.
Tony 13/12/2016
Wednesday, 30 November 2016
A long awaited catch up
Well it`s been a while, life seems to have got in the way of me doing regular postings so it is high time that changed. One of the biggest things going on has been the success of the Facebook support group I am involved with , Parkinsons Chat and Support Group, this is the link: https://www.facebook.com/groups/490857204425819/ or just search Facebook for us. After a slow start we have gradually built up our membership and as at this moment we have 643 members. Not all are active and seem to prefer to pop in from time to time and just read the information and posts, while others play an active role posting most days even if its just a cheery good morning to the group. In some ways the morning posts are like the infamous Waltons goodnight John Boy scenes, but in reverse with many cheerful good mornings.
I have the greatest of respect for all of our members whether they have Parkinsons, or they are the main carer of family member. Parkinsons is a degenerative, progressive neurological disease with at this time no cure and being diagnosed is a life changing experience for the person diagnosed and their family. One thing I have learnt is that the two most effective things those of us with Parkinsons Disease (P.D) can do is to maintain a positive attitude and to exercise as much as possible. Of course the progressive nature of P.D can limit the extent of exercise a person can do but if we exercise within our limits it can only help. I still enjoy walking and having 2 Jack Russell's Perdy and Max means I go out walking most days in the woods or on the beach. Living in Cornwall means we are spoilt for different places to go and it is something I will continue for as long as I am physically able too.
Regular readers will know the year after I was diagnosed with P,D I received the shock diagnosis of pancreatic cancer, one of the more aggressive cancers. I had the life saving surgery exactly 2 years ago followed by 6 months of chemotherapy and despite the low statistical survival rate of this cancer, at this time I am well and due to have my next blood tests in the new year. I have no doubt that further down the road I will face a reoccurrence, but until then I face life head on and will stay independent as long as possible. My son said to me after my chemo that he doesn't know if I am brave or just plain stubborn, well I think the stubbornness streak wins!!
As to where I am now with the P.D, firstly I am taking part in two trials, the newest one being the PDSTAT trial which is looking to see if statins can have an effect in slowing symptoms. I do not know if I am taking the statin drug or a dummy (placebo) drug as it is what is known as a double blind trial, but if my taking part can help someone else in the future, to me its a privilege to take part.
I can say without doubt that Parkinsons is having a daily negative affect on my life, it ranges from general apathy and no desire to do anything whatsoever, but of course I must, to inexplicable pain all over the body, loss of balance, memory loss, and general clumsiness to name but a few. A good day is followed by a not so good day....... I`m sure you get the picture. One thing that does sadden me is getting nervous in busy shops almost a panic, I took Gemma to a local RSPCA Xmas fayre last Sunday and I had to leave, everything was closing in on me it was not pleasant at all. Also if I have to go somewhere unfamiliar by car it is a daunting experience, now I love driving, but going on a journey away from my locality now makes me slightly nervous. I know its just a gradual progression of my Parkinsons but I don`t like it, but I will fight it as long as I am able to drive. I am on a 3 year driving licence due to Parkinsons which has just been renewed but I know the time will come when the medics will deem me as unfit to drive thus losing my independence and that is not something I look forward too.
However, Christmas is just around the corner again and very soon I will have to brave going into the loft to get the boxes of decorations down, I will wait until I am having a good day before I brave that!! I don`t know yet if its just Gemma and I Christmas day or if James is coming down, whatever happens we have the magic of skype to fall back on. James is getting married next June so he and Christy are busy making plans, I hope health wise I will be able to take part on his big day and join in the celebrations, I am sure they will have a long and happy life together.
Well that`s my little catch up for now, I will start posting regular updates again life just seems to have got in the way this year!! May I wish you a joyous Christmas and a happy and healthy 2017. We have a saying in the Parkinsons community, I may have Parkinsons but Parkinsons does not have me! long may that continue.
Tony 30/11/2016
I have the greatest of respect for all of our members whether they have Parkinsons, or they are the main carer of family member. Parkinsons is a degenerative, progressive neurological disease with at this time no cure and being diagnosed is a life changing experience for the person diagnosed and their family. One thing I have learnt is that the two most effective things those of us with Parkinsons Disease (P.D) can do is to maintain a positive attitude and to exercise as much as possible. Of course the progressive nature of P.D can limit the extent of exercise a person can do but if we exercise within our limits it can only help. I still enjoy walking and having 2 Jack Russell's Perdy and Max means I go out walking most days in the woods or on the beach. Living in Cornwall means we are spoilt for different places to go and it is something I will continue for as long as I am physically able too.
Regular readers will know the year after I was diagnosed with P,D I received the shock diagnosis of pancreatic cancer, one of the more aggressive cancers. I had the life saving surgery exactly 2 years ago followed by 6 months of chemotherapy and despite the low statistical survival rate of this cancer, at this time I am well and due to have my next blood tests in the new year. I have no doubt that further down the road I will face a reoccurrence, but until then I face life head on and will stay independent as long as possible. My son said to me after my chemo that he doesn't know if I am brave or just plain stubborn, well I think the stubbornness streak wins!!
As to where I am now with the P.D, firstly I am taking part in two trials, the newest one being the PDSTAT trial which is looking to see if statins can have an effect in slowing symptoms. I do not know if I am taking the statin drug or a dummy (placebo) drug as it is what is known as a double blind trial, but if my taking part can help someone else in the future, to me its a privilege to take part.
I can say without doubt that Parkinsons is having a daily negative affect on my life, it ranges from general apathy and no desire to do anything whatsoever, but of course I must, to inexplicable pain all over the body, loss of balance, memory loss, and general clumsiness to name but a few. A good day is followed by a not so good day....... I`m sure you get the picture. One thing that does sadden me is getting nervous in busy shops almost a panic, I took Gemma to a local RSPCA Xmas fayre last Sunday and I had to leave, everything was closing in on me it was not pleasant at all. Also if I have to go somewhere unfamiliar by car it is a daunting experience, now I love driving, but going on a journey away from my locality now makes me slightly nervous. I know its just a gradual progression of my Parkinsons but I don`t like it, but I will fight it as long as I am able to drive. I am on a 3 year driving licence due to Parkinsons which has just been renewed but I know the time will come when the medics will deem me as unfit to drive thus losing my independence and that is not something I look forward too.
However, Christmas is just around the corner again and very soon I will have to brave going into the loft to get the boxes of decorations down, I will wait until I am having a good day before I brave that!! I don`t know yet if its just Gemma and I Christmas day or if James is coming down, whatever happens we have the magic of skype to fall back on. James is getting married next June so he and Christy are busy making plans, I hope health wise I will be able to take part on his big day and join in the celebrations, I am sure they will have a long and happy life together.
Well that`s my little catch up for now, I will start posting regular updates again life just seems to have got in the way this year!! May I wish you a joyous Christmas and a happy and healthy 2017. We have a saying in the Parkinsons community, I may have Parkinsons but Parkinsons does not have me! long may that continue.
Tony 30/11/2016
Monday, 22 February 2016
Potential new battle looming
Hi all this is a quick update relating to the cancer part of my ongoing journey.
If you have been following this blog you will be aware that i have been through pancreatic cancer, thought to have originated in the bile duct. this is a vigorous cancer but luckily it was caught in time to allow me to undergo the Whipple procedure at Derriford hospital Plymouth where i was on the operating table for nearly 7 hours and and a satsuma size tumour was removed. My Lymph nodes had also been affected and the surgeon removed what he could but could not remove all the affected nodes, hence the following six months chemotherapy at Teliske Hospital Truro to help mop up any remaining cancer cells. I was warned however that there was always a risk that some rogue cells could remain and travel to other parts of my body ie liver, lungs etc causing secondary cancer.
For some time now I have been experiencing a dull pain on my right hand side around the liver area and last week I suffered a lot of intense nausea and vomiting which was very debilitating and rather unpleasant. I made an appointment to see my G.P earlier this morning and as usual he was excellent taking my concerns seriously and after examining me agreed there seems to be some liver swelling and some fluid build up just below my rib cage. So, I have had blood taken this morning to get some idea of liver function etc and I will get the results in a couple of days. If as suspected this test is positive he will order a CT scan and get me in to see my oncologist once the scan results are in.
As too what happens then I am not sure, I understand that surgery is unlikely due to the extent of the Whipple procedure in November 2015 so further stronger chemotherapy is probably going to be the next step depending of course on the number and extent of any potential tumours on my liver.
So, as the title of this update suggests a new battle potentially looms for me, on top of my Parkinson's, am I physically and mentally strong enough for this? well I certainly will not go down without a fight that's for sure, I may have to dig deeper this time but I have my two wonderful children and many friends to support me and two manic Jack Russell's to help keep me active.
Watch this space and once i have more information to share i will post another update and keep you all in the loop. thankyou for reading this and `being there` it helps me to write this blog and to share this journey I am on.
Take good care of yourselves my friends and those nearest and dearest to you.
Feel free to give any feedback etc to me on borninkernow@outlook.com
If you have been following this blog you will be aware that i have been through pancreatic cancer, thought to have originated in the bile duct. this is a vigorous cancer but luckily it was caught in time to allow me to undergo the Whipple procedure at Derriford hospital Plymouth where i was on the operating table for nearly 7 hours and and a satsuma size tumour was removed. My Lymph nodes had also been affected and the surgeon removed what he could but could not remove all the affected nodes, hence the following six months chemotherapy at Teliske Hospital Truro to help mop up any remaining cancer cells. I was warned however that there was always a risk that some rogue cells could remain and travel to other parts of my body ie liver, lungs etc causing secondary cancer.
For some time now I have been experiencing a dull pain on my right hand side around the liver area and last week I suffered a lot of intense nausea and vomiting which was very debilitating and rather unpleasant. I made an appointment to see my G.P earlier this morning and as usual he was excellent taking my concerns seriously and after examining me agreed there seems to be some liver swelling and some fluid build up just below my rib cage. So, I have had blood taken this morning to get some idea of liver function etc and I will get the results in a couple of days. If as suspected this test is positive he will order a CT scan and get me in to see my oncologist once the scan results are in.
As too what happens then I am not sure, I understand that surgery is unlikely due to the extent of the Whipple procedure in November 2015 so further stronger chemotherapy is probably going to be the next step depending of course on the number and extent of any potential tumours on my liver.
So, as the title of this update suggests a new battle potentially looms for me, on top of my Parkinson's, am I physically and mentally strong enough for this? well I certainly will not go down without a fight that's for sure, I may have to dig deeper this time but I have my two wonderful children and many friends to support me and two manic Jack Russell's to help keep me active.
Watch this space and once i have more information to share i will post another update and keep you all in the loop. thankyou for reading this and `being there` it helps me to write this blog and to share this journey I am on.
Take good care of yourselves my friends and those nearest and dearest to you.
Feel free to give any feedback etc to me on borninkernow@outlook.com
Thursday, 11 February 2016
New Year fresh challenges.
Hi everyone, where is the time going? It only seems like yesterday that Christmas and New Year was dominating our lives, and now here we are looking forward to spring.
On reflection I can see how when younger we take our health and well-being for granted, after all why worry about older age, chronic illness and social isolation in the flush of youth? and that's the way it should be. I heard a saying somewhere that living is for the young, and long may that be. As I write this my son is coming to the end of his dream holiday in Thailand, he is living his dream and building memories that will sustain him for the rest of his life, he will tell his children and hopefully grandchildren in decades to come about his adventures, as they too will reach out and experience new exciting cultures in an ever shrinking world.
I would love to revisit the Mayan ruins in Mexico, that place left an indelible mark in my heart and I cannot really explain why. I knew I was walking in the footsteps of great Mayan priests, Spanish conquistadors, and the adventurers of the 19th Century who rediscovered these lost civilisations deep in the Yucatan peninsula. It may sound silly but it was for me a spiritual experience, not in the way that I saw the light and found God there, it was a deep awe and wonder of this misunderstood culture that were technically superior in the way they built their stone pyramids deep in the rain forests that line up exactly with the spring and summer solstice.
Yes we all know it was probably cruel and barbaric and thousands of workers lives were sacrificed in building these monuments, but the place touched me deeply. Was I sensing the wonder of the place or feeling and sensing the pain and torment which was the price paid by thousands of expendable workers? I will never truly know, but I hope my son has in his travels, felt the same intrigue, wonder and at the same time some sadness of man`s power and cruelty in the unstinting tide of power and domination.
Bringing this blog back to reality, and my Parkinson`s and cancer journey, well that road is still being travelled. I remain at stage 3 pancreatic cancer, with the next blood test and scan due next month. It still surprises me some 15 months post surgery the amount of pain and discomfort I feel. I have gained some weight which is good and people say how well I look lol and yes compared to how I looked pre surgery it is an improvement. The cancer I have has a very poor survival rate long term, its a bit of a ticking time bomb but, to this date I am still on top of it and if things change then i will face it head on again. My Parkinson`s now dominates my daily life which is a complete reversal to a year ago when chemotherapy and all that entailed pushed the Parkinson's further down the scale of urgency.
There is little doubt that Parkinson's is having more and more of a negative effect on my daily life. My sleep pattern is a joke. I am normally awake now between 3 and 4 in the morning as I find it too uncomfortable to stay in bed. This is usually back/leg pain and I cannot just stay in bed, its better that I get up and take some painkillers to help settle things down. Thank goodness for 24 hour tv!! Some days are fairly ok, particularly a nice dry day and I can get outside and do things, it can almost make me forget I have two chronic illnesses, and boy I relish and make the most of those days even if I suffer the next day! I am of course a full time carer to ,me many hurdles to achieve great things and if my life on this earth is judged on my children, I will be so proud and happy.
I saw my Parkinsons nurse this week, which was a positive and constructive meeting . My Neupro patch is going to be increased to 6mg, my Co-Beneldopa to remain the same, and she is going to try me on Entacapone to see if that helps the stiffness etc. She seems very receptive to me being assessed for DBS and she is going to contact my consultant to get the ball rolling so it can be discussed when I see him in a few weeks. She did say not many from Cornwall have had this procedure mainly due to age and unsuitability so who knows maybe they will consider me suitable,
This if I am found suitable is Deep Brain Stimulation (DBS) this link will explain if its new to you http://www.parkinsons.org.uk/content/deep-brain-stimulation-surgery-parkinsons
Of course its not an easy option it is very major surgery which does carry risks ie strokes or death, but, if it helps to control the incessant tremor which will only get worse as this disease progresses this will give me a better quality of life, the chance to reduce medication etc, but it is all down to a long assessment process. I will be seeing my consultant in the spring and i will broach the subject with him then. I guess too if my cancer should return or spread that will probably reduce my chances of suitability, so watch this space and send good positive vibes lol. My nearest clinic for this will be Bristol so a lot of travelling will be involved.
I just wanted to mention again the excellent Parkinson's support group I am fortunate enough to have the responsibility of administrating along with a lovely lady called Michelle. It is a closed group so we can closely monitor who we accept into the group. We like to be a group of like minded people from all over the world who are primarily people with Parkinson's (PWP) or, carers and family members.
Please come along and have a look if you are reading this and have an interest in Parkinson's, search for us on Facebook, Parkinson's forum The Parky Chat Group. We have a lovely group of people in there all with their own story and experiences, the lovely thing is there is always somebody around if a member is having a bad day for whatever reason, and that means a lot as Parkinson's can be a lonely journey. We maintain a mix of current research articles, help and information and some social chat and fun. The group is not affiliated to Parkinson's UK but we do use information from their excellent website which is worth a visit http://www.parkinsons.org.uk/
Well folks I have rambled again and covered a lot of information about my life and the journey I am on. Thank you so much for reading this, please share it with anyone you think may be interested.
Contact me on borninkernow@outlook.com or pop into our Facebook group and apply to join if you have an interest in Parkinson's.
Take good care of yourselves and those around you, tell them you love them frequently.
Tony
On reflection I can see how when younger we take our health and well-being for granted, after all why worry about older age, chronic illness and social isolation in the flush of youth? and that's the way it should be. I heard a saying somewhere that living is for the young, and long may that be. As I write this my son is coming to the end of his dream holiday in Thailand, he is living his dream and building memories that will sustain him for the rest of his life, he will tell his children and hopefully grandchildren in decades to come about his adventures, as they too will reach out and experience new exciting cultures in an ever shrinking world.
I would love to revisit the Mayan ruins in Mexico, that place left an indelible mark in my heart and I cannot really explain why. I knew I was walking in the footsteps of great Mayan priests, Spanish conquistadors, and the adventurers of the 19th Century who rediscovered these lost civilisations deep in the Yucatan peninsula. It may sound silly but it was for me a spiritual experience, not in the way that I saw the light and found God there, it was a deep awe and wonder of this misunderstood culture that were technically superior in the way they built their stone pyramids deep in the rain forests that line up exactly with the spring and summer solstice.
Yes we all know it was probably cruel and barbaric and thousands of workers lives were sacrificed in building these monuments, but the place touched me deeply. Was I sensing the wonder of the place or feeling and sensing the pain and torment which was the price paid by thousands of expendable workers? I will never truly know, but I hope my son has in his travels, felt the same intrigue, wonder and at the same time some sadness of man`s power and cruelty in the unstinting tide of power and domination.
Bringing this blog back to reality, and my Parkinson`s and cancer journey, well that road is still being travelled. I remain at stage 3 pancreatic cancer, with the next blood test and scan due next month. It still surprises me some 15 months post surgery the amount of pain and discomfort I feel. I have gained some weight which is good and people say how well I look lol and yes compared to how I looked pre surgery it is an improvement. The cancer I have has a very poor survival rate long term, its a bit of a ticking time bomb but, to this date I am still on top of it and if things change then i will face it head on again. My Parkinson`s now dominates my daily life which is a complete reversal to a year ago when chemotherapy and all that entailed pushed the Parkinson's further down the scale of urgency.
There is little doubt that Parkinson's is having more and more of a negative effect on my daily life. My sleep pattern is a joke. I am normally awake now between 3 and 4 in the morning as I find it too uncomfortable to stay in bed. This is usually back/leg pain and I cannot just stay in bed, its better that I get up and take some painkillers to help settle things down. Thank goodness for 24 hour tv!! Some days are fairly ok, particularly a nice dry day and I can get outside and do things, it can almost make me forget I have two chronic illnesses, and boy I relish and make the most of those days even if I suffer the next day! I am of course a full time carer to ,me many hurdles to achieve great things and if my life on this earth is judged on my children, I will be so proud and happy.
I saw my Parkinsons nurse this week, which was a positive and constructive meeting . My Neupro patch is going to be increased to 6mg, my Co-Beneldopa to remain the same, and she is going to try me on Entacapone to see if that helps the stiffness etc. She seems very receptive to me being assessed for DBS and she is going to contact my consultant to get the ball rolling so it can be discussed when I see him in a few weeks. She did say not many from Cornwall have had this procedure mainly due to age and unsuitability so who knows maybe they will consider me suitable,
This if I am found suitable is Deep Brain Stimulation (DBS) this link will explain if its new to you http://www.parkinsons.org.uk/content/deep-brain-stimulation-surgery-parkinsons
Of course its not an easy option it is very major surgery which does carry risks ie strokes or death, but, if it helps to control the incessant tremor which will only get worse as this disease progresses this will give me a better quality of life, the chance to reduce medication etc, but it is all down to a long assessment process. I will be seeing my consultant in the spring and i will broach the subject with him then. I guess too if my cancer should return or spread that will probably reduce my chances of suitability, so watch this space and send good positive vibes lol. My nearest clinic for this will be Bristol so a lot of travelling will be involved.
I just wanted to mention again the excellent Parkinson's support group I am fortunate enough to have the responsibility of administrating along with a lovely lady called Michelle. It is a closed group so we can closely monitor who we accept into the group. We like to be a group of like minded people from all over the world who are primarily people with Parkinson's (PWP) or, carers and family members.
Please come along and have a look if you are reading this and have an interest in Parkinson's, search for us on Facebook, Parkinson's forum The Parky Chat Group. We have a lovely group of people in there all with their own story and experiences, the lovely thing is there is always somebody around if a member is having a bad day for whatever reason, and that means a lot as Parkinson's can be a lonely journey. We maintain a mix of current research articles, help and information and some social chat and fun. The group is not affiliated to Parkinson's UK but we do use information from their excellent website which is worth a visit http://www.parkinsons.org.uk/
Well folks I have rambled again and covered a lot of information about my life and the journey I am on. Thank you so much for reading this, please share it with anyone you think may be interested.
Contact me on borninkernow@outlook.com or pop into our Facebook group and apply to join if you have an interest in Parkinson's.
Take good care of yourselves and those around you, tell them you love them frequently.
Tony
Take
a trip into the past. Follow the footsteps of Mayan priests, brave
Spanish conquistadors, and 19th century adventurers who climbed the same
steps that you are about to embark on. Deep in the Yucatan jungle lie
the remains of ancient Mayan cities that will enrich your understanding
of this interesting yet misunderstood culture. Don't miss what some
would say to be the "Egypt of the Americas." The Mayan ruins of the
Yucatan are awe-inspiring and provide a deeper understanding of Mexican
history. - See more at:
https://www.locogringo.com/mexico/ways-to-play/mayan-ruins-archaeological-sites/#sthash.R9O96U9S.dpuf
Take
a trip into the past. Follow the footsteps of Mayan priests, brave
Spanish conquistadors, and 19th century adventurers who climbed the same
steps that you are about to embark on. Deep in the Yucatan jungle lie
the remains of ancient Mayan cities that will enrich your understanding
of this interesting yet misunderstood culture. Don't miss what some
would say to be the "Egypt of the Americas." The Mayan ruins of the
Yucatan are awe-inspiring and provide a deeper understanding of Mexican
history. - See more at:
https://www.locogringo.com/mexico/ways-to-play/mayan-ruins-archaeological-sites/#sthash.R9O96U9S.dpuf
Take
a trip into the past. Follow the footsteps of Mayan priests, brave
Spanish conquistadors, and 19th century adventurers who climbed the same
steps that you are about to embark on. Deep in the Yucatan jungle lie
the remains of ancient Mayan cities that will enrich your understanding
of this interesting yet misunderstood culture. Don't miss what some
would say to be the "Egypt of the Americas." The Mayan ruins of the
Yucatan are awe-inspiring and provide a deeper understanding of Mexican
history. - See more at:
https://www.locogringo.com/mexico/ways-to-play/mayan-ruins-archaeological-sites/#sthash.R9O96U9S.dpuf
Wednesday, 4 November 2015
The Current state of play - what will 2016 bring?
Like a lot of medicines, research is moving at a fast pace with more and more claims that a cure for Parkinsons is getting closer each day. For thousands before us it will of course be too late, and possibly in our lifetime also but all the trials and research we take part in, are little steps towards that monumental day when we can shout from the rooftops, there is a cure for Parkinsons! I am taking part in a trial looking at the effects of my medication and how the disease affects me neurologically.
I am pleased to play a small part in one of many Facebook self support groups for patients with Parkinsons and our carers. https://www.facebook.com/groups/490857204425819/?fref=ts Please pop in and take a look, we are a small but growing very supportive group, where we discuss some serious issues affecting us but we also have a laugh about things also when its appropiate.
I can without doubt see a marked deteriation in my Parkinsons since my last blog, my resting tremor in particular is getting worse and if I am over tired or under some stress my legs shakes badly too. I have rcently also started choking on certain foods and my Parkinsons nurse referred me to adult speech therapy as part of their remit deals with such issues. Basically my swallowing reflex is not working as efficiantly as it once did so certain food groups in particular spongy food like cake, some fruit, biscuits, meusli etc tends to stop part way down causing a nasty choking sensation which believe me is not nice to experience. I see her again next week and since the last visit I have been completing a choking diary to help build up a pattern. I think the worst scenario is a soft food/liquid diet. Some precautions I will need to start is cutting my food up into smaller pieces to try and avoid the problem. Also I have had a couple of tumbles, it would almost be comical if I didn`t know better, as I fell over the damn coffee table, luckily no damage to the table or me apart from a sore knee and hurt pride!!
As to the dreaded pancreatic (bile duct) cancer, my chemo has finished and having had 3 scans since it finished my oncologist expressed some concern over some slight changes shown up in the scans, but this could be soft tissue changes post surgery. My most recent blood test showed a slightly raised mark for cancer but not enough to warrant further treatment at this stage. I need to have another full blood check next month and if that raises any concern the oncologist will see me about it. If not I see him in April for bloods and scan. On a day to day basis I still feel discomfort inside around my liver area, and walking can tire me out on some days also.
Of course me being greedy, I don`t settle for one major illness, oh no Tony has to go the full hog and get a rare vigerous cancer as well as Parkinsons. The complication with this is that the symptoms overlap each other and it can be difficult to tell if the symptom I feel is related to one or the other or both! One classic example is mood swings/low moods/lethargy. These of course are classic Parkinsons as this disease affects the brain, but having stage 3 cancer also contributes towards these problems also, why has life got to be so complicated lol!
Poor sleep continues to be an issue and this can obviously hinder the lethargy which seems to be increasing it seems a never ending circle and makes me seem to be a complete whinger but I am sensible enough to realise it has to be dealt with so off to the surgery next week to chat to my gp.
I have `met` and continue to meet some inspirational and wonderful folk worldwide in the cancer/parkinsons forums I belong too, I consider them friends although I will probably never meet them in person, but we continue to share fun times and sad times, welcoming new members to the groups and hearing of sad news in the cancer groups when someone gains their wings and leaves this life. I must shout out a particular Hi to Matt in America, we have both gone through the same cancer and whipple surgery He will know who he is and we hope to meet and shake hands if he can make it back to this country in the future. Matt doesn`t say a lot, but when he writes in the forums he writes deeply and with great belief and emotion and spiritual belief which supports many of us in our journey. Thanks Matt. your words do help and one day hopefully in 2016 we can say hi in person.
Well I seem to have rabbited on and on, sorry if this has been a moaning blog, it wasn`t meant to be, maybe if it is, it shows where I am at this moment in time and no doubt many will recognise this themselves.
I will sign off now, its time to get Gemma sorted and do her hot milk and honey! her life revolves around her routine so even if I feel like crap the need to care for Gemsie pushes me through so in a strange way she does help to keep me focussed on life!
Take great care my friends and look after each other,
Tony
borninkernow@outlook.com
I am pleased to play a small part in one of many Facebook self support groups for patients with Parkinsons and our carers. https://www.facebook.com/groups/490857204425819/?fref=ts Please pop in and take a look, we are a small but growing very supportive group, where we discuss some serious issues affecting us but we also have a laugh about things also when its appropiate.
I can without doubt see a marked deteriation in my Parkinsons since my last blog, my resting tremor in particular is getting worse and if I am over tired or under some stress my legs shakes badly too. I have rcently also started choking on certain foods and my Parkinsons nurse referred me to adult speech therapy as part of their remit deals with such issues. Basically my swallowing reflex is not working as efficiantly as it once did so certain food groups in particular spongy food like cake, some fruit, biscuits, meusli etc tends to stop part way down causing a nasty choking sensation which believe me is not nice to experience. I see her again next week and since the last visit I have been completing a choking diary to help build up a pattern. I think the worst scenario is a soft food/liquid diet. Some precautions I will need to start is cutting my food up into smaller pieces to try and avoid the problem. Also I have had a couple of tumbles, it would almost be comical if I didn`t know better, as I fell over the damn coffee table, luckily no damage to the table or me apart from a sore knee and hurt pride!!
As to the dreaded pancreatic (bile duct) cancer, my chemo has finished and having had 3 scans since it finished my oncologist expressed some concern over some slight changes shown up in the scans, but this could be soft tissue changes post surgery. My most recent blood test showed a slightly raised mark for cancer but not enough to warrant further treatment at this stage. I need to have another full blood check next month and if that raises any concern the oncologist will see me about it. If not I see him in April for bloods and scan. On a day to day basis I still feel discomfort inside around my liver area, and walking can tire me out on some days also.
Of course me being greedy, I don`t settle for one major illness, oh no Tony has to go the full hog and get a rare vigerous cancer as well as Parkinsons. The complication with this is that the symptoms overlap each other and it can be difficult to tell if the symptom I feel is related to one or the other or both! One classic example is mood swings/low moods/lethargy. These of course are classic Parkinsons as this disease affects the brain, but having stage 3 cancer also contributes towards these problems also, why has life got to be so complicated lol!
Poor sleep continues to be an issue and this can obviously hinder the lethargy which seems to be increasing it seems a never ending circle and makes me seem to be a complete whinger but I am sensible enough to realise it has to be dealt with so off to the surgery next week to chat to my gp.
I have `met` and continue to meet some inspirational and wonderful folk worldwide in the cancer/parkinsons forums I belong too, I consider them friends although I will probably never meet them in person, but we continue to share fun times and sad times, welcoming new members to the groups and hearing of sad news in the cancer groups when someone gains their wings and leaves this life. I must shout out a particular Hi to Matt in America, we have both gone through the same cancer and whipple surgery He will know who he is and we hope to meet and shake hands if he can make it back to this country in the future. Matt doesn`t say a lot, but when he writes in the forums he writes deeply and with great belief and emotion and spiritual belief which supports many of us in our journey. Thanks Matt. your words do help and one day hopefully in 2016 we can say hi in person.
Well I seem to have rabbited on and on, sorry if this has been a moaning blog, it wasn`t meant to be, maybe if it is, it shows where I am at this moment in time and no doubt many will recognise this themselves.
I will sign off now, its time to get Gemma sorted and do her hot milk and honey! her life revolves around her routine so even if I feel like crap the need to care for Gemsie pushes me through so in a strange way she does help to keep me focussed on life!
Take great care my friends and look after each other,
Tony
borninkernow@outlook.com
Thursday, 10 September 2015
Medication changes........
One thing People With Parkinsons (PWP) have in common seems to be the constant juggling of medications to control symptoms to enable us to have a normal as possible life and remaining as independent as possible, for as long as possible. The stories one often hear of PWP being accused of being drunk or on some illegal drug sadly can be a reality due to the side effects of this horrible illness. On bad days I cannot totally control the shaking of my left hand and leg and this is exaggerated if under any kind of emotional stress or simply not being able to have a decent nights sleep.
I belong to various Parkinsons chat/support groups which have members world wide and lack of sleep is a common thread. This can be caused by the inability to switch off or muscle cramping and pain. In my case as with other PWP its just a waste of time staying in bed so if I am still awake 2 hours after going to bed I give up and come into the lounge. Soon after being diagnosed a couple of years ago I actually went 2 months without going to bed at all! I don`t really know what the cause was but to me it was not a big problem. I substituted my comfy bed for a reclining chair but I know my son was a bit concerned by it. However in time I forced myself to go to bed and get back as much as possible into a `normal` routine. It is not a problem now, I just know when I have no hope of sleeping and come into the lounge and watch a late night film or browse facebook and see who else is awake!!
The pain I frequently feel particularly at night is difficult to differentiate between Parkinson's or the cancer journey I am currently on. My oncologist tells me I must expect some pain and discomfort following the Whipple procedure which is major surgery after all, but Parkinson's can cause unexplained pain and discomfort also still. I have the unenviable choice of being able to blame one or both inflections!! I remember my son saying to me pops I cant decide if you are being brave or just stubborn!! Well I guess if I am honest I am more stubborn than brave, the 8 days post cancer surgery in intensive care were hell on earth but I got through it and slowly got back to being a full time carer for my young adult daughter, with no external help coming in. Luckily we live in a bungalow anyway which made life easier but how I was itching to get the mower out and cut the lawns! I probably did that before I should but that's where my stubborn streak won over my sensible streak! Actually I have said that my two Jack Russell's helped me recover, after all they still need to be walked and yes it was slow and little distance to begin with but I am convinced this daily routine has helped in my recovery.
I go for another scan in a few weeks as the oncologist is a bit concerned about some small changes he is seeing in each scan, I know they could not get all the infected lymph nodes out hence my 6 months chemo which they hoped would mop things up. However bile duct cancer is a nasty beast and very few actually totally beat it, so it is good i am being watched so closely.
I will update again soon,
Look after yourselves and each other, you do not know what is around the corner.
Tony in Cornwall.
borninkernow@outlook.com
I belong to various Parkinsons chat/support groups which have members world wide and lack of sleep is a common thread. This can be caused by the inability to switch off or muscle cramping and pain. In my case as with other PWP its just a waste of time staying in bed so if I am still awake 2 hours after going to bed I give up and come into the lounge. Soon after being diagnosed a couple of years ago I actually went 2 months without going to bed at all! I don`t really know what the cause was but to me it was not a big problem. I substituted my comfy bed for a reclining chair but I know my son was a bit concerned by it. However in time I forced myself to go to bed and get back as much as possible into a `normal` routine. It is not a problem now, I just know when I have no hope of sleeping and come into the lounge and watch a late night film or browse facebook and see who else is awake!!
The pain I frequently feel particularly at night is difficult to differentiate between Parkinson's or the cancer journey I am currently on. My oncologist tells me I must expect some pain and discomfort following the Whipple procedure which is major surgery after all, but Parkinson's can cause unexplained pain and discomfort also still. I have the unenviable choice of being able to blame one or both inflections!! I remember my son saying to me pops I cant decide if you are being brave or just stubborn!! Well I guess if I am honest I am more stubborn than brave, the 8 days post cancer surgery in intensive care were hell on earth but I got through it and slowly got back to being a full time carer for my young adult daughter, with no external help coming in. Luckily we live in a bungalow anyway which made life easier but how I was itching to get the mower out and cut the lawns! I probably did that before I should but that's where my stubborn streak won over my sensible streak! Actually I have said that my two Jack Russell's helped me recover, after all they still need to be walked and yes it was slow and little distance to begin with but I am convinced this daily routine has helped in my recovery.
I go for another scan in a few weeks as the oncologist is a bit concerned about some small changes he is seeing in each scan, I know they could not get all the infected lymph nodes out hence my 6 months chemo which they hoped would mop things up. However bile duct cancer is a nasty beast and very few actually totally beat it, so it is good i am being watched so closely.
I will update again soon,
Look after yourselves and each other, you do not know what is around the corner.
Tony in Cornwall.
borninkernow@outlook.com
Thursday, 13 August 2015
Wish I could sleep!!
As those of you reading this may know from first hand experience, one of the distressing Parkinson`s side effects is how it screws up normal sleep patterns.
Two nights this week I have only had a couple of hours of fitful dozing in my chair as I could not settle in bed. Now alongside being a PWP (person with parkinsons) I am at stage 3 bile duct cancer oh and also full time carer to my young adult daughter who has a learning disability. Now I am not complaining or looking for sympathy about my caring role or my illnesses, in fact I strongly believe that having a caring responsibility focuses me to lead and keep a normal as possible life and stops me from wallowing in self pity. In a similar way my two Jack Russell's Max and Perdy still expect their two walks a day thus forcing me to take exercise instead of sitting on my butt!! and I again strongly believe they have helped me to get through this past twelve months and to lead a life as normal as strength and tiredness especially while going through chemotherapy allows me. Don`t get me wrong, I have days when I am so exhausted it takes a lot of self will to even walk the dogs etc but hey I am still here and writing this blog which I thank you for taking time out of your day to read.
I am not out of the woods yet but I am so grateful that so far I am one of the few to be diagnosed with this horrible cancer to be caught in time to be considered suitable for surgery, never mind to be still here some twelve months later. Many many poor souls die within weeks of diagnosis and I empathise so very much with their families and loved ones.
I am also trying to concentrate on the book I started writing some two years ago. It is based here in my beloved Cornwall and the fictional characters all have Cornish names. In a nutshell they are a long forgotten tribe of beings living in the warren of tunnels left behind from Cornwalls heritage in tin mining and around the wonderful disused remains of the engine houses high up on the granite cliffs. I have changed tack slightly to try and write a sequence of short stories featuring one of my characters in each story. Where I am currently stuck is illustrating my characters and I know that if I see them come to life it will help the story to flow. If anyone reading this has done something similar or can advise me do please leave me a message on my email borninkernow@outlook.com It would be such a goal achieved if I can at least complete a few short stories. that will be one thing ticked on my bucket list!!
My daughter is going to a respite family for 3 nights this weekend, so if it ever stops raining here in Cornwall I am determined to stroll around a couple of car boot sales taking my time and going at my pace knowing Gemma is being well looked after. Who knows I may even sleep!!
Well thanks for reading my ramblings and do please comment or email me if something strikes a chord with you or indeed if you disagree with anything I say.
Take good care of each other guys.
Two nights this week I have only had a couple of hours of fitful dozing in my chair as I could not settle in bed. Now alongside being a PWP (person with parkinsons) I am at stage 3 bile duct cancer oh and also full time carer to my young adult daughter who has a learning disability. Now I am not complaining or looking for sympathy about my caring role or my illnesses, in fact I strongly believe that having a caring responsibility focuses me to lead and keep a normal as possible life and stops me from wallowing in self pity. In a similar way my two Jack Russell's Max and Perdy still expect their two walks a day thus forcing me to take exercise instead of sitting on my butt!! and I again strongly believe they have helped me to get through this past twelve months and to lead a life as normal as strength and tiredness especially while going through chemotherapy allows me. Don`t get me wrong, I have days when I am so exhausted it takes a lot of self will to even walk the dogs etc but hey I am still here and writing this blog which I thank you for taking time out of your day to read.
I am not out of the woods yet but I am so grateful that so far I am one of the few to be diagnosed with this horrible cancer to be caught in time to be considered suitable for surgery, never mind to be still here some twelve months later. Many many poor souls die within weeks of diagnosis and I empathise so very much with their families and loved ones.
I am also trying to concentrate on the book I started writing some two years ago. It is based here in my beloved Cornwall and the fictional characters all have Cornish names. In a nutshell they are a long forgotten tribe of beings living in the warren of tunnels left behind from Cornwalls heritage in tin mining and around the wonderful disused remains of the engine houses high up on the granite cliffs. I have changed tack slightly to try and write a sequence of short stories featuring one of my characters in each story. Where I am currently stuck is illustrating my characters and I know that if I see them come to life it will help the story to flow. If anyone reading this has done something similar or can advise me do please leave me a message on my email borninkernow@outlook.com It would be such a goal achieved if I can at least complete a few short stories. that will be one thing ticked on my bucket list!!
My daughter is going to a respite family for 3 nights this weekend, so if it ever stops raining here in Cornwall I am determined to stroll around a couple of car boot sales taking my time and going at my pace knowing Gemma is being well looked after. Who knows I may even sleep!!
Well thanks for reading my ramblings and do please comment or email me if something strikes a chord with you or indeed if you disagree with anything I say.
Take good care of each other guys.
Monday, 20 July 2015
"You look so well"
One comment makes me smile inside these days, and today its happened 4 times, "you look so well" It makes me wonder how people expect me to look or is there a social expectation that those of us with cancer look stereotypically cancer like.
To be honest the waiting room of the chemotherapy suite at the hospital looks no different from any other, and the patients waiting for treatment on the whole look like any other patient group. Yes, a few show tell tale signs of chemo induced hair loss but they are in the minority, and its a surprisingly chirpy place with people greeting each other and just talking normal stuff like weather, price of parking in the hospital etc.
In the chemo suite too patients greet each other as they go in for treatment and it is a surprisingly soul lifting and supportive experience with patients sharing a common bond with each other and the nurses on a regular basis. For some like me, my treatment takes just under an hour if the chemo had come from the pharmacy on time, but others are in there for hours at a time receiving more complex combinations of drugs.
Now my current course of chemo has ended and I have had my CT scan, its now a matter of waiting to see my oncology consultant next week to see if the chemo has worked or this particularly invasive bile duct cancer has spread to other areas ie liver, lungs or bowel. I know I will be extremely nervous on that day but on the other hand worry is not going to change the outcome be that good or bad news but I guess its a very vulnerable time with potentially lots of information to take in and deal with.
Yes, people are right, I do look fairly well at the moment, one side effect of chemo is that ones skin browns faster so we are warned to take precautions in the summer months and yes I have lost my jaundiced appearance where I was starting to look as yellow as a minion character. but people cannot feel the discomfort, the tiredness and exhaustion I can feel on a daily basis where one has to force oneself to get motivated etc these are the invisible effects of not just cancer but many other illnesses that many people fight on a daily basis. However on the whole I am positive about the future whatever that may be and eternally grateful for the treatment the NHS has given me and will continue to do so for as long as I need it. I have my off days where I have more negative thoughts and worry about my disabled daughters future should I eventually lose this fight, and even worry about who will care for my two dogs who mean so much to me. As I go round the house now I am subconsciously trying to dispose of clutter and stuff that is just lying around in cupboards just in case.
I guess this is normal behaviour and I cannot do any decorating at the moment as I feel there may not be any point if there is a possibility I may not be around to enjoy it and why should I decorate for someone else to come in and change it! This may seem depressive but it isn`t meant to be, a terminal illness is I think a great leveler, I live in the here and now, I am unable to make plans too many months in advance, short term is more important than long term and I appreciate simple things a lot more, a kindly word from people as I am out with the dogs, the neighbour who passes a fresh home made cherry cake over the fence, my hanging baskets and flower displays that I spend hours tending, a message from my many friends on Facebook and the love from my children and extended family. Life is very hectic for all of us at the best of times full of deadlines and goals in our working and family lives and perhaps we are guilty of taking life too much for granted, forgetting the smaller simple things in life, like our family, pets, sunrises, the glorious sunsets, friends and the neighbours we rarely acknowledge or even know the names of. So yes I do `look well` on the surface, but I am also so much more aware of and appreciative of what and who is around me and just keeping my fingers crossed that I continue to be one step ahead of cancer for some time yet!
Look after ourselves my friends and just do me one small favour, as you read this take a moment to think of and appreciate those around you who mean so much to you and give them an extra special hug and let them know that you love them, because you never know .........
To be honest the waiting room of the chemotherapy suite at the hospital looks no different from any other, and the patients waiting for treatment on the whole look like any other patient group. Yes, a few show tell tale signs of chemo induced hair loss but they are in the minority, and its a surprisingly chirpy place with people greeting each other and just talking normal stuff like weather, price of parking in the hospital etc.
In the chemo suite too patients greet each other as they go in for treatment and it is a surprisingly soul lifting and supportive experience with patients sharing a common bond with each other and the nurses on a regular basis. For some like me, my treatment takes just under an hour if the chemo had come from the pharmacy on time, but others are in there for hours at a time receiving more complex combinations of drugs.
Now my current course of chemo has ended and I have had my CT scan, its now a matter of waiting to see my oncology consultant next week to see if the chemo has worked or this particularly invasive bile duct cancer has spread to other areas ie liver, lungs or bowel. I know I will be extremely nervous on that day but on the other hand worry is not going to change the outcome be that good or bad news but I guess its a very vulnerable time with potentially lots of information to take in and deal with.
Yes, people are right, I do look fairly well at the moment, one side effect of chemo is that ones skin browns faster so we are warned to take precautions in the summer months and yes I have lost my jaundiced appearance where I was starting to look as yellow as a minion character. but people cannot feel the discomfort, the tiredness and exhaustion I can feel on a daily basis where one has to force oneself to get motivated etc these are the invisible effects of not just cancer but many other illnesses that many people fight on a daily basis. However on the whole I am positive about the future whatever that may be and eternally grateful for the treatment the NHS has given me and will continue to do so for as long as I need it. I have my off days where I have more negative thoughts and worry about my disabled daughters future should I eventually lose this fight, and even worry about who will care for my two dogs who mean so much to me. As I go round the house now I am subconsciously trying to dispose of clutter and stuff that is just lying around in cupboards just in case.
I guess this is normal behaviour and I cannot do any decorating at the moment as I feel there may not be any point if there is a possibility I may not be around to enjoy it and why should I decorate for someone else to come in and change it! This may seem depressive but it isn`t meant to be, a terminal illness is I think a great leveler, I live in the here and now, I am unable to make plans too many months in advance, short term is more important than long term and I appreciate simple things a lot more, a kindly word from people as I am out with the dogs, the neighbour who passes a fresh home made cherry cake over the fence, my hanging baskets and flower displays that I spend hours tending, a message from my many friends on Facebook and the love from my children and extended family. Life is very hectic for all of us at the best of times full of deadlines and goals in our working and family lives and perhaps we are guilty of taking life too much for granted, forgetting the smaller simple things in life, like our family, pets, sunrises, the glorious sunsets, friends and the neighbours we rarely acknowledge or even know the names of. So yes I do `look well` on the surface, but I am also so much more aware of and appreciative of what and who is around me and just keeping my fingers crossed that I continue to be one step ahead of cancer for some time yet!
Look after ourselves my friends and just do me one small favour, as you read this take a moment to think of and appreciate those around you who mean so much to you and give them an extra special hug and let them know that you love them, because you never know .........
Thursday, 16 July 2015
Taking up the blogging mantle again.
Hi all some of you will remember my previous blog following my Parkinson's diagnosis in the summer of 2013 and how this fitted in with my role as a full time carer to my daughter who has a learning disability. You were also introduced to Max and Perdy our family Jack Russel's and also Connor our elderly westie who has sadly passed since my previous blog.
We live in Cornwall UK a wonderful place to live but even in such an idyllic setting. the realities of life hit us between the eyes and in my case in 2013 this was my diagnosis of Early Onset Parkinson's Disease. I think Parkinson's is an illness most of us are aware of but until it directly affects us or our family it remains an awareness and we have no real concept of the impact it has on people with Parkinson`s (PWP) or their immediate and greater family.
My previous blog ran until 2014 when again I received another devastating diagnosis, this time of cancer, and this has had a major impact on my life following major surgery at Derriford Hospital in Plymouth where on November 20th 2014 I underwent a near seven hour operation to remove a satsuma sized tumor and part of my stomach. This surgery is known as a Whipples procedure https://en.wikipedia.org/wiki/Pancreaticoduodenectomy. In short this surgery saved my life but after 8 days in hospital I was allowed home to continue my slow recovery.
To bring things up to date I have just finished 6 months chemotherapy which to be fair once we had the correct combination of drugs to control the nausea and sickness I tolerated reasonably well, it was the fatigue a couple of days post chemo that I found hard to deal with but that is behind me for now, and following a CT scan this week I am now waiting to see my oncology consultant to see what the scan has revealed.
I guess my blog has two possible interest groups now, other Parkinson's folk and also people who have had similar cancer experiences, not forgetting of course the families who are also on the journey with their loved ones be it Parkinson`s or Cancer.
I hope you enjoy the blog as much as I will enjoy writing it. The journey is unpredictable and at this time I don`t know the outcomes but thank you for letting me share it with you and I would welcome your feedback/comments via my email borninkernow@outlook.com or on my facebook page https://www.facebook.com/tjkernow
The blog page will develop and change as I add photographs etc and learn how to make it look professional!!
For now please bookmark the blog and I look forward to sharing my journey with you.
Take good care
Tony.
We live in Cornwall UK a wonderful place to live but even in such an idyllic setting. the realities of life hit us between the eyes and in my case in 2013 this was my diagnosis of Early Onset Parkinson's Disease. I think Parkinson's is an illness most of us are aware of but until it directly affects us or our family it remains an awareness and we have no real concept of the impact it has on people with Parkinson`s (PWP) or their immediate and greater family.
My previous blog ran until 2014 when again I received another devastating diagnosis, this time of cancer, and this has had a major impact on my life following major surgery at Derriford Hospital in Plymouth where on November 20th 2014 I underwent a near seven hour operation to remove a satsuma sized tumor and part of my stomach. This surgery is known as a Whipples procedure https://en.wikipedia.org/wiki/Pancreaticoduodenectomy. In short this surgery saved my life but after 8 days in hospital I was allowed home to continue my slow recovery.
To bring things up to date I have just finished 6 months chemotherapy which to be fair once we had the correct combination of drugs to control the nausea and sickness I tolerated reasonably well, it was the fatigue a couple of days post chemo that I found hard to deal with but that is behind me for now, and following a CT scan this week I am now waiting to see my oncology consultant to see what the scan has revealed.
I guess my blog has two possible interest groups now, other Parkinson's folk and also people who have had similar cancer experiences, not forgetting of course the families who are also on the journey with their loved ones be it Parkinson`s or Cancer.
I hope you enjoy the blog as much as I will enjoy writing it. The journey is unpredictable and at this time I don`t know the outcomes but thank you for letting me share it with you and I would welcome your feedback/comments via my email borninkernow@outlook.com or on my facebook page https://www.facebook.com/tjkernow
The blog page will develop and change as I add photographs etc and learn how to make it look professional!!
For now please bookmark the blog and I look forward to sharing my journey with you.
Take good care
Tony.
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