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.
Sunday, 29 January 2017
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
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