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
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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