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
Monday 22 February 2016
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
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