Learning to manage fatigue
The cancer fatigue I experience seems to have gone up a notch these past weeks. I'm now understanding the importance of managing it or suffer the consequences of what the Occupational Therapists call boom and bust. The cycle of having a boom of energy over - doing it and then being bust - having no energy and not getting anything at all done, which is what I experienced on Saturday when I suffered because of over activity with appointments last Friday. I ended up in bed most of that day, feeling physically ill and fatigued. I've tried various ways to sneak around the fatigue and cram in what I can, when I can in, but it's not the way. I now understand the need for conserving energy and taking frequent breaks. I had some reflexology at the Hospice this afternoon which was lovely and relaxing, and worth the effort to be out of the house and there on time. Following that I met up with the Occupational Therapist at the hospice for our second meeting. I handed in my homework of time sheets where I'd kept track of my energy levels throughout each day. I could clearly see where there were periods when fatigue had reached high levels caused by over activity, often from the previous day. I've now got some charts to organise my time, where I can make breaks for myself throughout the day so I'm not physically, emotionally, socially, or mentally, using precious energy. Even watching T.V. is classed as using low levels of energy, It's going to take a while to adjust and organise my day and conserve as much as possible. Like the rest of my journey through cancer, it will become normal for me as I adjust to the changes in a gradual way. I have to step back from who I have been, and function in a new way. Life goes on around me at full pace, it feels like I'm watching at some distance. Obviously I'm participating in life, and most times from an internal viewing point, it's difficult and humbling at the same time. It's like being stripped bare of everything you've known before. Giving up and letting go of parts of yourself you can't be anymore. The internal living goes on and many remarkable changes occur within which are not possible to describe. When all else is being whittled away from your life what are you left with. More of the core of who I am comes forward with a strong inner voice. It's the part of me that watches, and understands, and gives me strength.
Sunday 26 February 2012
A bit more energy today
Thank you for your messages on Judith McGuinness cancer support through collective thinking facebook page. I was thinking today about how many special people I have come across in my life, especially during these past two years. Most of my friends I've never met face to face because they are spread across the globe, yet I have experienced bonds with you that I hold close to my heart. Thank you. When I lived in Dubai for almost a decade I made many friends, and have happy memories of the special times we spent together. I received some beautiful jewelry from a friend who I've never met this week, yet I've known her over the internet for at least 10 years. I was amazed that she should send the gifts which where so thoughtfully put together. The world is a small place these days. I have some special relationships at a distance, and those I've developed over the past decade, and those of you I've known for many years, you are all there. Thank you.
When I wake up each day I usually feel a bit worse, or the same as when I went to bed. It's been a number of years since sleep refreshed me. Cancer fatigue is hard to figure out and work with, it takes time. As the fatigue has increased I'm having to learn new ways to cope and deal with it. As I lay in bed this morning I wondered how I should go about washing and drying my hair. I'd felt quite exhausted yesterday and spent all afternoon and early evening in bed. This morning I didn't feel much different but I got up around 10.30 and headed for the shower. I felt the same exhaustion and aching limbs as I did yesterday so I sat down for a break before drying my hair. I was relived to find I started to feel a bit more energy as the morning passed, and by 2pm I found myself dressed and ready to go with Alan to pick up my Granddaughter Ella for her riding lesson, which we take her to every Sunday afternoon. I just had enough energy to go and I didn't want to give it up because it had taken quite a bit of effort to get ready, so even though someone else in the family offered to take her I went. It's my pleasure to watch her have her lesson, and it's my time to bond with her every Sunday. I treasure being able to do that with her. When we got back from the lesson I was also able to manage a 20 minute walk which pleased me a lot, being in the countryside and seeing the horizon again was a tonic. The tonic that works the best for me. So, thankfully, I've been able to function which is good. The only way to describe how I feel is a mixture between having flu and the onset of an infection. It's very similar to when I developed the Breast infection I had three weeks ago.
After my walk I was in the house and I could hear the loud sound of Scottish Bagpipes echoing around the stone buildings outside,.. we went out and there was a piper with my Sister Gill walking closely behind him with flowers in her hand. How amazing it was! There he was playing Scottish tunes to me at my own front door, and he was in full dress! Thank you Gill, and for the flowers, tea, cake and ice-cream, you are very, very thoughtful, you spoil me and I love it!
I may be able to get a video clip of the Piper if you check back in later!
Thank you for your messages on Judith McGuinness cancer support through collective thinking facebook page. I was thinking today about how many special people I have come across in my life, especially during these past two years. Most of my friends I've never met face to face because they are spread across the globe, yet I have experienced bonds with you that I hold close to my heart. Thank you. When I lived in Dubai for almost a decade I made many friends, and have happy memories of the special times we spent together. I received some beautiful jewelry from a friend who I've never met this week, yet I've known her over the internet for at least 10 years. I was amazed that she should send the gifts which where so thoughtfully put together. The world is a small place these days. I have some special relationships at a distance, and those I've developed over the past decade, and those of you I've known for many years, you are all there. Thank you.
When I wake up each day I usually feel a bit worse, or the same as when I went to bed. It's been a number of years since sleep refreshed me. Cancer fatigue is hard to figure out and work with, it takes time. As the fatigue has increased I'm having to learn new ways to cope and deal with it. As I lay in bed this morning I wondered how I should go about washing and drying my hair. I'd felt quite exhausted yesterday and spent all afternoon and early evening in bed. This morning I didn't feel much different but I got up around 10.30 and headed for the shower. I felt the same exhaustion and aching limbs as I did yesterday so I sat down for a break before drying my hair. I was relived to find I started to feel a bit more energy as the morning passed, and by 2pm I found myself dressed and ready to go with Alan to pick up my Granddaughter Ella for her riding lesson, which we take her to every Sunday afternoon. I just had enough energy to go and I didn't want to give it up because it had taken quite a bit of effort to get ready, so even though someone else in the family offered to take her I went. It's my pleasure to watch her have her lesson, and it's my time to bond with her every Sunday. I treasure being able to do that with her. When we got back from the lesson I was also able to manage a 20 minute walk which pleased me a lot, being in the countryside and seeing the horizon again was a tonic. The tonic that works the best for me. So, thankfully, I've been able to function which is good. The only way to describe how I feel is a mixture between having flu and the onset of an infection. It's very similar to when I developed the Breast infection I had three weeks ago.
After my walk I was in the house and I could hear the loud sound of Scottish Bagpipes echoing around the stone buildings outside,.. we went out and there was a piper with my Sister Gill walking closely behind him with flowers in her hand. How amazing it was! There he was playing Scottish tunes to me at my own front door, and he was in full dress! Thank you Gill, and for the flowers, tea, cake and ice-cream, you are very, very thoughtful, you spoil me and I love it!
I may be able to get a video clip of the Piper if you check back in later!
Saturday 25 February 2012
Zero energy day, and I feel ill
Not feeling too good today. I managed a visit to Jessica's, my daughters this morning, then lunch on the way home, but by 2pm I needed to lie down. The sofa wouldn't do, I had to go to bed. I got up just before 8pm, and here I am doing a few lines on my blog, but I need to get back in bed. I missed my walk, I wanted to see the beautiful land and smell my precious Countryside. I could do with a house on a hill with floor to ceiling windows so I could look out across the Moor. I felt sad I couldn't even stroll down the lane, but what am I going to do about it. Moaning helps!
I'll have to think about one of my favorite paths I like to walk along if I can't see it today.
Not feeling too good today. I managed a visit to Jessica's, my daughters this morning, then lunch on the way home, but by 2pm I needed to lie down. The sofa wouldn't do, I had to go to bed. I got up just before 8pm, and here I am doing a few lines on my blog, but I need to get back in bed. I missed my walk, I wanted to see the beautiful land and smell my precious Countryside. I could do with a house on a hill with floor to ceiling windows so I could look out across the Moor. I felt sad I couldn't even stroll down the lane, but what am I going to do about it. Moaning helps!
Friday 24 February 2012
Hospice Appointment and Ultra sound scan
My appointment with the Doctor at the Hospice went very well today. I don't think it could have gone any better, which is very nice to be able to say. It's my second meeting with her, and we aim to have regular appointments starting with the next one in a months time. It was good to feel confidence in her, she listened well, asked all the right questions and obviously had a great deal of experience in dealing with terminally ill patients. For this I was grateful, she understood me very well. It's not easy to find anyone who understands in such a way, in fact it's very hard to find that level of understanding of the process of dying. She asked me how I felt in my inner being about everything. I talked about how, in general, I'm a positive person but I have days, and moments, when I feel low, I may cry or I may feel blue, and worry about the family being without me. She smiled and said she would be worried if I didn't have days like that, if people say they are positive all the time she said, sometimes it can be harder to deal with than the illness or disease itself. I get that. I also talked with her about the process of my journey with cancer from my diagnosis to this point, and how I've adapted and adjusted over the 2 years. Every day I adapt, I progress through mental processes. There is a lot to work through. This afternoon I went to have an ultra sound scan, I had to drink one and a half pints of water an hour and a half before the appointment, and not go to the toilet. The first time they tried to scan me my bladder wasn't full enough so I went off to drink some more water for half an hour. I drank over 2 liters of water. The second try went well, and the Radiologist chatted to me all the way through, and I watched the ultra sound scan on the screen with her. She couldn't check out the right ovary but the left one had a fluid filled cyst. My uterus looked healthy so I asked her to check out my pelvic area. She said when a pelvic cancer mass is large it pushes things over such as the bladder which didn't show any signs of being pushed over. Finally she checked out my kidney's. My left Kidney was still showing signs of enlargement but there was no back up noted, the right Kidney was fine. Thankfully it sounds like the cancer mass in my pelvis hasn't caused a back up in my Kidneys yet which is good news. My Kidney aches on my left side, the Radiographer said that could be that the Kidney is draining slower than normal. I'll have to wait now to talk to my G.P. because they need the measurements of the Ovarian cysts from my C.T. Scan in January to compare with her report of today's ultra sound scan. This could take some time because the Radiographer who compiled the report for my C.T. scan didn't put any measurements on the report for the ovarian cysts. He did for the lung tumours. My brain doesn't work as well since I had chemotherapy treatments for 6 months, sometimes my sentences are out of cinch and I can't say what I want to say in ways I want to say it. Let's hope you can make sense of this.
I've played this Sting song a few times when I've been at home today, 'Desert Rose' is another song which I liked when we lived in Dubai. I especially liked it because of it's Middle Eastern style which I grew to like when I lived there.
My appointment with the Doctor at the Hospice went very well today. I don't think it could have gone any better, which is very nice to be able to say. It's my second meeting with her, and we aim to have regular appointments starting with the next one in a months time. It was good to feel confidence in her, she listened well, asked all the right questions and obviously had a great deal of experience in dealing with terminally ill patients. For this I was grateful, she understood me very well. It's not easy to find anyone who understands in such a way, in fact it's very hard to find that level of understanding of the process of dying. She asked me how I felt in my inner being about everything. I talked about how, in general, I'm a positive person but I have days, and moments, when I feel low, I may cry or I may feel blue, and worry about the family being without me. She smiled and said she would be worried if I didn't have days like that, if people say they are positive all the time she said, sometimes it can be harder to deal with than the illness or disease itself. I get that. I also talked with her about the process of my journey with cancer from my diagnosis to this point, and how I've adapted and adjusted over the 2 years. Every day I adapt, I progress through mental processes. There is a lot to work through. This afternoon I went to have an ultra sound scan, I had to drink one and a half pints of water an hour and a half before the appointment, and not go to the toilet. The first time they tried to scan me my bladder wasn't full enough so I went off to drink some more water for half an hour. I drank over 2 liters of water. The second try went well, and the Radiologist chatted to me all the way through, and I watched the ultra sound scan on the screen with her. She couldn't check out the right ovary but the left one had a fluid filled cyst. My uterus looked healthy so I asked her to check out my pelvic area. She said when a pelvic cancer mass is large it pushes things over such as the bladder which didn't show any signs of being pushed over. Finally she checked out my kidney's. My left Kidney was still showing signs of enlargement but there was no back up noted, the right Kidney was fine. Thankfully it sounds like the cancer mass in my pelvis hasn't caused a back up in my Kidneys yet which is good news. My Kidney aches on my left side, the Radiographer said that could be that the Kidney is draining slower than normal. I'll have to wait now to talk to my G.P. because they need the measurements of the Ovarian cysts from my C.T. Scan in January to compare with her report of today's ultra sound scan. This could take some time because the Radiographer who compiled the report for my C.T. scan didn't put any measurements on the report for the ovarian cysts. He did for the lung tumours. My brain doesn't work as well since I had chemotherapy treatments for 6 months, sometimes my sentences are out of cinch and I can't say what I want to say in ways I want to say it. Let's hope you can make sense of this.
I've played this Sting song a few times when I've been at home today, 'Desert Rose' is another song which I liked when we lived in Dubai. I especially liked it because of it's Middle Eastern style which I grew to like when I lived there.
Wednesday 22 February 2012
Occupational Therapist Home Visit
I had a visit from the community Occupational Therapist this morning. I really enjoyed her visit, I found it productive and I was happy to learn the way I continue to adapt my lifestyle around the fatigue I experience is on the right track. I answered her questions and graded how I experience fatigue during the day between 1-10 points. I've also got some homework to do, filling in a few forms and using the same grading system for each task I do. Whilst we were talking I saw how far I'd moved away from how I used to be able to function. I wouldn't think twice about the routines I had in my day I'd just do them whatever they were. I took the way I could function for granted, I only needed to think how the way I functioned was different if I had a common cold, or had a virus, or something which changed how I could function. My life was my life, I was living it how it was then, why would I need to think, oh look I can mop the floor or cook a meal. It's only when normal every day functionality is taken away I understand how fortunate, and for me, how very wonderful it is to be able to do tasks without thought. I'm starting to get used to planning my day a bit better so I don't get caught out with fatigue as much as I do. I break things down into little tasks as much as possible, spreading things out over a full week to get them done. What I could get done in a day now takes me a week to complete and that's without working either. Mentally, I've adjusted as I've gone along, and I've shed the disappointments and frustrations of not having the freedom of being able to do the day to day things I took for granted before I developed bowel cancer. Every day is an adjustment, mentally and physically, as the disease progresses. When cancer reaches the terminally ill stage, it can feel like it's running behind you hounding you down. I like to try and stay a few steps ahead and know what I could be up against in the future. Not so I can wallow in sorrow or fear of what may come, but that's okay if I feel sorrow or fear, but so I can prepare mentally, which is important to me, and has been throughout this journey. The Occupational Therapist has agreed to be honest and up front with me, we understand each other, and this will be helpful in the months ahead as we work together and she helps me to live. To live. That sounds good.
I had a visit from the community Occupational Therapist this morning. I really enjoyed her visit, I found it productive and I was happy to learn the way I continue to adapt my lifestyle around the fatigue I experience is on the right track. I answered her questions and graded how I experience fatigue during the day between 1-10 points. I've also got some homework to do, filling in a few forms and using the same grading system for each task I do. Whilst we were talking I saw how far I'd moved away from how I used to be able to function. I wouldn't think twice about the routines I had in my day I'd just do them whatever they were. I took the way I could function for granted, I only needed to think how the way I functioned was different if I had a common cold, or had a virus, or something which changed how I could function. My life was my life, I was living it how it was then, why would I need to think, oh look I can mop the floor or cook a meal. It's only when normal every day functionality is taken away I understand how fortunate, and for me, how very wonderful it is to be able to do tasks without thought. I'm starting to get used to planning my day a bit better so I don't get caught out with fatigue as much as I do. I break things down into little tasks as much as possible, spreading things out over a full week to get them done. What I could get done in a day now takes me a week to complete and that's without working either. Mentally, I've adjusted as I've gone along, and I've shed the disappointments and frustrations of not having the freedom of being able to do the day to day things I took for granted before I developed bowel cancer. Every day is an adjustment, mentally and physically, as the disease progresses. When cancer reaches the terminally ill stage, it can feel like it's running behind you hounding you down. I like to try and stay a few steps ahead and know what I could be up against in the future. Not so I can wallow in sorrow or fear of what may come, but that's okay if I feel sorrow or fear, but so I can prepare mentally, which is important to me, and has been throughout this journey. The Occupational Therapist has agreed to be honest and up front with me, we understand each other, and this will be helpful in the months ahead as we work together and she helps me to live. To live. That sounds good.
Tuesday 21 February 2012
Just because I like it!
Thank you for the comments on the facebook group page - Judith McGuinness Cancer support through collective thinking. I've not found it easy to share parts of my journey through cancer, especially in this blog, where I've shared some intimate parts of my life with friends and the public in general. In yesterdays blog I talked about feeling down, I found that difficult to do, but it was real, I was exposing a part of myself that I would usually keep to myself. When I was growing up the influences around me were all about, snapping out of things and putting a smile on your face. I learned to do a fake smile very well. Smile your way through everything...what's wrong with your face, why are you being moody. I felt guilty for feeling, I felt guilty being who I was. Learning to express how I feel hasn't been easy over the years, I'd tuck everything away, swallow it down and crack on. Now, I make a conscious effort to acknowledge how I'm feeling and be real, be honest, or as honest as I can be. As I said in a previous blog, sharing my journey is about drawing attention to early detection and diagnosis of cancer. If someone out there gets checked out, or recommends a friend or family get tested, if they think they are experiencing symptoms which aren't normal for them, it's worth every line, and every private thought I can put out here on these blogs. Listen to your body regularly, many times it's trying to tell you something, don't ignore it like I did.
I now have an appointment for an ultra sound scan, I only went to see my G.P. yesterday so I was amazed when I got a phone call from a hospital which is not too far from where I live. It's not the usual National Health Service Hospital but a Private Hospital. I'm not sure how my Doctor made this happen in record time but she did. Friday will see me at the Hospice in the morning to see my Doctor there, and then in the afternoon I have the Ultra sound scan to check the cysts which have developed in my Ovaries.
I'm putting this track on today's blog for no reason whatsoever other than for the heck of it. I liked listening to Carlos Santana on Guitar since I was a teenager. When we lived in Dubai we played this quite a lot. When Alan was working away I'd play it ..even when are apart it feels like we're together... It's not bad for singing along to and dancing round the kitchen to either.
Carlos Santana - Maria Maria
Thank you for the comments on the facebook group page - Judith McGuinness Cancer support through collective thinking. I've not found it easy to share parts of my journey through cancer, especially in this blog, where I've shared some intimate parts of my life with friends and the public in general. In yesterdays blog I talked about feeling down, I found that difficult to do, but it was real, I was exposing a part of myself that I would usually keep to myself. When I was growing up the influences around me were all about, snapping out of things and putting a smile on your face. I learned to do a fake smile very well. Smile your way through everything...what's wrong with your face, why are you being moody. I felt guilty for feeling, I felt guilty being who I was. Learning to express how I feel hasn't been easy over the years, I'd tuck everything away, swallow it down and crack on. Now, I make a conscious effort to acknowledge how I'm feeling and be real, be honest, or as honest as I can be. As I said in a previous blog, sharing my journey is about drawing attention to early detection and diagnosis of cancer. If someone out there gets checked out, or recommends a friend or family get tested, if they think they are experiencing symptoms which aren't normal for them, it's worth every line, and every private thought I can put out here on these blogs. Listen to your body regularly, many times it's trying to tell you something, don't ignore it like I did.
I now have an appointment for an ultra sound scan, I only went to see my G.P. yesterday so I was amazed when I got a phone call from a hospital which is not too far from where I live. It's not the usual National Health Service Hospital but a Private Hospital. I'm not sure how my Doctor made this happen in record time but she did. Friday will see me at the Hospice in the morning to see my Doctor there, and then in the afternoon I have the Ultra sound scan to check the cysts which have developed in my Ovaries.
I'm putting this track on today's blog for no reason whatsoever other than for the heck of it. I liked listening to Carlos Santana on Guitar since I was a teenager. When we lived in Dubai we played this quite a lot. When Alan was working away I'd play it ..even when are apart it feels like we're together... It's not bad for singing along to and dancing round the kitchen to either.
Carlos Santana - Maria Maria
Monday 20 February 2012
Bilateral Ovarian Cyst problems
Further problems with Ovaries saw me getting an appointment with my G.P. this morning. She'd asked me to come back to see her if the discomfort in my abdomen didn't improve over the week. She's referring me to the hospital for an ultra-sound scan and also to see a Gynecologist Consultant. I've also been in touch with the District Nurse who's coming out to see me on Monday. I've not seen her since I was discharged from Oncology into Palliative care with the Hospice, so I gave her a brief update and will chat more with her next week. When my Macmillan Specialist Nurse found out my symptoms were getting worse from my Ovaries, she said she would get an appointment sorted out for me with the Doctor at the Hospice. They were prompt, getting in touch with me an hour later with an appointment set up for Friday morning. I've also got the Occupational Therapist coming out on Wednesday morning to help me manage the fatigue that cancer brings along. I'm terminally ill with cancer, so if it turns out the bilateral cysts in my ovaries are cancer it doesn't change the prognosis, but I still want to know what's happening in my body. We're already keeping an eye on the lungs tumours, the tumour pressing on my urethra, and my bowels, so I want to know what I'm up against in my ovaries. I've felt a bit low today from one or two things the Doctor said, and how the terminal part of this disease is creeping in, it's overwhelming sometimes. Especially when you are living in a world where the future is part of your today, because so much of our today's are spent talking about what we will do in the future. I've not been able to dig deep and find the positive attitude which is usually there for me. I find unrealistic approaches somewhat depressing some days. I think I'm positive with a realistic attitude thrown in. Generally, I keep the balance just how I like it, in between two, but airy fairy I'm not. I experience realism without feeling low most of the time because I use my mind to make sense of what's happening to me. I weigh things up. Right from day one I've asked all Doctors and Consultants to be up front and honest with me. I need that. I request to know what they know. It's my body, I have a right to know. Today, I feel low and that's fine. I allow myself to feel what is there to feel. I spent enough time teaching my clients how to do that for themselves, today has been a day to practice what I teach, to not feel guilty about feeling down or upset, not to try and disguise it, or hide it but to let it go.
Further problems with Ovaries saw me getting an appointment with my G.P. this morning. She'd asked me to come back to see her if the discomfort in my abdomen didn't improve over the week. She's referring me to the hospital for an ultra-sound scan and also to see a Gynecologist Consultant. I've also been in touch with the District Nurse who's coming out to see me on Monday. I've not seen her since I was discharged from Oncology into Palliative care with the Hospice, so I gave her a brief update and will chat more with her next week. When my Macmillan Specialist Nurse found out my symptoms were getting worse from my Ovaries, she said she would get an appointment sorted out for me with the Doctor at the Hospice. They were prompt, getting in touch with me an hour later with an appointment set up for Friday morning. I've also got the Occupational Therapist coming out on Wednesday morning to help me manage the fatigue that cancer brings along. I'm terminally ill with cancer, so if it turns out the bilateral cysts in my ovaries are cancer it doesn't change the prognosis, but I still want to know what's happening in my body. We're already keeping an eye on the lungs tumours, the tumour pressing on my urethra, and my bowels, so I want to know what I'm up against in my ovaries. I've felt a bit low today from one or two things the Doctor said, and how the terminal part of this disease is creeping in, it's overwhelming sometimes. Especially when you are living in a world where the future is part of your today, because so much of our today's are spent talking about what we will do in the future. I've not been able to dig deep and find the positive attitude which is usually there for me. I find unrealistic approaches somewhat depressing some days. I think I'm positive with a realistic attitude thrown in. Generally, I keep the balance just how I like it, in between two, but airy fairy I'm not. I experience realism without feeling low most of the time because I use my mind to make sense of what's happening to me. I weigh things up. Right from day one I've asked all Doctors and Consultants to be up front and honest with me. I need that. I request to know what they know. It's my body, I have a right to know. Today, I feel low and that's fine. I allow myself to feel what is there to feel. I spent enough time teaching my clients how to do that for themselves, today has been a day to practice what I teach, to not feel guilty about feeling down or upset, not to try and disguise it, or hide it but to let it go.
Saturday 18 February 2012
Anniversary of Dad's passing:
On the 18th February 13 years ago today my Dad left his physical body after a long illness with dementia. It was an honour to be with him that day with other family members sat around his bedside. I still feel privileged that I was able to be present with he left. When I think about that day I feel a sense of humility. It was a humbling experience.
Dad was one of the most self assured men I've ever known, apart from my husband Alan. He danced to the beat of his own drum and never worried about what people thought about him. I remember being with him at a local hospital one Saturday morning, I must have been around 11 or 12. He'd been asked by the police to identify the body of a man who had no known family or friends. After we'd been kept waiting over 20 minutes he firmly told the young policeman, "If you don't call me in soon I'm leaving!" Within two or three minutes he was called. I remember when I was little he built a red sports car from a kit. He worked around the clock and painted on bare canvas through the night. He bound books, he illustrated children's books, he was an art teacher, he printed, he sculptured, he was a photographer, he sold cars. He loved music, he played music, he loved red wine and good food, he like to write poetry, he loved the sunshine and holidays. He loved his little cottage in a village in Spain, he liked to read, he liked to learn, he spoke Spanish dialect and traditional Spanish. He worked hard, he designed and got our house built before I was born, he pushed for that and would do without to achieve that goal. He only ate a biscuit for lunch at the school he taught at during that period to help make that happen. He had an abundance of productive energy. For all his offspring who find this page, it will give you a tiny glimpse into the character of Eric Eswod Wright.
Many times you'd go to Mum and Dad's house, which was a lovely welcoming and homely hub for the entire family. You'd walk in and hear Dad's music from the speakers in the living room, fed in from the lounge where he'd be sitting. He would be playing Julio Iglesias songs. He loved this music and so did Mum, she'd often cry at some of the tracks! This is for the memory of those times Dad, I can see you with a glass of red wine in your hand and Julio Iglesias romantic tones flowing through the house.
This is Julio Iglesias - El amor
On the 18th February 13 years ago today my Dad left his physical body after a long illness with dementia. It was an honour to be with him that day with other family members sat around his bedside. I still feel privileged that I was able to be present with he left. When I think about that day I feel a sense of humility. It was a humbling experience.
Dad was one of the most self assured men I've ever known, apart from my husband Alan. He danced to the beat of his own drum and never worried about what people thought about him. I remember being with him at a local hospital one Saturday morning, I must have been around 11 or 12. He'd been asked by the police to identify the body of a man who had no known family or friends. After we'd been kept waiting over 20 minutes he firmly told the young policeman, "If you don't call me in soon I'm leaving!" Within two or three minutes he was called. I remember when I was little he built a red sports car from a kit. He worked around the clock and painted on bare canvas through the night. He bound books, he illustrated children's books, he was an art teacher, he printed, he sculptured, he was a photographer, he sold cars. He loved music, he played music, he loved red wine and good food, he like to write poetry, he loved the sunshine and holidays. He loved his little cottage in a village in Spain, he liked to read, he liked to learn, he spoke Spanish dialect and traditional Spanish. He worked hard, he designed and got our house built before I was born, he pushed for that and would do without to achieve that goal. He only ate a biscuit for lunch at the school he taught at during that period to help make that happen. He had an abundance of productive energy. For all his offspring who find this page, it will give you a tiny glimpse into the character of Eric Eswod Wright.
Many times you'd go to Mum and Dad's house, which was a lovely welcoming and homely hub for the entire family. You'd walk in and hear Dad's music from the speakers in the living room, fed in from the lounge where he'd be sitting. He would be playing Julio Iglesias songs. He loved this music and so did Mum, she'd often cry at some of the tracks! This is for the memory of those times Dad, I can see you with a glass of red wine in your hand and Julio Iglesias romantic tones flowing through the house.
This is Julio Iglesias - El amor
Friday 17 February 2012
Happy Birthday Jake
I'm dedicating this blog to my Son Jake who's birthday is today. Jake went with me to the hospital the morning I had a colonoscopy. Jake was the first family member to see me after I was told I had a large apple core lesion, almost causing a complete blockage in my bowel. Alan, my husband, had gone back to Dubai a few weeks before that to work because I told him it would be okay, I didn't have cancer so why worry... Jake has also been a wonderful support through the past two years, despite the fact he has two children, a busy life around home, study for his degree, then work. How he got his History degree with honours I don't know, with what was going on with my operations and treatments at the time, but he did. He has been there for me as much as possible, he has cooked for me, he has cleaned for me, he has sat through treatment with me once. I saw his concerned face when I was coming round from my 7hrs 30mins bowel surgery. Jake is my first born child who was breech delivery. I was scheduled to have a home delivery at my Mum's house, but as he was in breech position I had to go to hospital. I was the first person at that hospital to have as natural a Breech delivery as possible, with no drugs or gas and air. Would I do it again if I had my time over, definitely not, I would be reaching for gas and air! We have shared some wonderful times together and have many, many, happy memories. Especially when he would come out to Dubai to stay with us, sometimes three times a year. Later, when he had children, he stayed for 3 months and Jessica was living there too.
Happy Birthday Jake. Most of all on your birthday, I want you to know I love you so very much, you have been a wonderful Son and friend. You may not get to see this blog for a long time, but when you do, I want you to know I've always been proud of you as I watched you growing up, all through the years.. to the man you have become. I hope you find what you're looking for in your life, I hope you find love, I hope you fill your life with special things, I hope you think of you, be kind to yourself. I have been blessed to have you as my Son, what an amazing person you are. I love you always, I'll never say goodbye... It took me a while to sort out this song, it had to have the right words. I know you like the Bee Gee's too.
Happy Birthday Son, I love you, Mum x.
This is 'Immortality' written by the Bee Gees, performed by them and Celine Dion.
I'm dedicating this blog to my Son Jake who's birthday is today. Jake went with me to the hospital the morning I had a colonoscopy. Jake was the first family member to see me after I was told I had a large apple core lesion, almost causing a complete blockage in my bowel. Alan, my husband, had gone back to Dubai a few weeks before that to work because I told him it would be okay, I didn't have cancer so why worry... Jake has also been a wonderful support through the past two years, despite the fact he has two children, a busy life around home, study for his degree, then work. How he got his History degree with honours I don't know, with what was going on with my operations and treatments at the time, but he did. He has been there for me as much as possible, he has cooked for me, he has cleaned for me, he has sat through treatment with me once. I saw his concerned face when I was coming round from my 7hrs 30mins bowel surgery. Jake is my first born child who was breech delivery. I was scheduled to have a home delivery at my Mum's house, but as he was in breech position I had to go to hospital. I was the first person at that hospital to have as natural a Breech delivery as possible, with no drugs or gas and air. Would I do it again if I had my time over, definitely not, I would be reaching for gas and air! We have shared some wonderful times together and have many, many, happy memories. Especially when he would come out to Dubai to stay with us, sometimes three times a year. Later, when he had children, he stayed for 3 months and Jessica was living there too.
Happy Birthday Jake. Most of all on your birthday, I want you to know I love you so very much, you have been a wonderful Son and friend. You may not get to see this blog for a long time, but when you do, I want you to know I've always been proud of you as I watched you growing up, all through the years.. to the man you have become. I hope you find what you're looking for in your life, I hope you find love, I hope you fill your life with special things, I hope you think of you, be kind to yourself. I have been blessed to have you as my Son, what an amazing person you are. I love you always, I'll never say goodbye... It took me a while to sort out this song, it had to have the right words. I know you like the Bee Gee's too.
Happy Birthday Son, I love you, Mum x.
This is 'Immortality' written by the Bee Gees, performed by them and Celine Dion.
Thursday 16 February 2012
Why share the last months of my life:
I've only another day of anti-biotics to take for the breast infection I developed last week. I still find it odd that I've had a breast infection, where did that one come from! Ah well, hopefully I can put it behind me with the pile of other experiences I'm building from my experiences with bowel cancer. The pile mounts!
Following on from what I said at the end of my previous blog, about questioning sharing my experiences in public: I am a private kind of person in many ways. I'm not particularly up front when it comes to sharing details of my life with anyone. If people from around the World want to find out what I have to say about my journey through bowel cancer then that's another matter. It has been a challenge these past two years, to share parts of my journey through the group my daughter Jessica set up, which is, Judith McGuinness cancer support through collective thinking. It's been worth it to see how the group has evolved into almost an online community. I've had countless private messages from people who are members of the group asking about the symptoms I developed before I was diagnosed with bowel cancer. I've had messages from people telling me they are going to see their G.P., or they have been referred to hospital for a Colonoscopy, which examines the inside of the bowel via a camera. There has been a lot of sharing on the Group through exchanges and interactions. My daughter first set up the Facebook group so that there was a central point for information regarding my treatments and operations. It has been a place where people can leave a message for me or ask questions. Before Jessica set up the Facebook group page, my phone would ring off the hook and I couldn't respond to all the emails and texts that were coming in. Now, it's much easier for everyone to keep updated. I'm now getting used to my own blog space, it's difficult to know what and how to say something, hopefully I'll get used to it in my own way. Sometimes I feel there is so much to say I can't make a start, where to begin! Now, coming back to why I'm sharing myself and my family through this blog: The simple answer is because it may make a difference to someone, somewhere. If one person, one family, doesn't have to go through what I and my family have been through these past two years, then, it is worth doing. For two years I've been through the most intense, challenging and demanding periods of my life. I feel like I've been thrown across jagged rocks by a stormy sea, battered. The years before were hardly a walk in the park. For 15 years I've been intensely involved with first my Dad, and then my Mum over 12 years, with Dementia. What with the twists and turns of my own life it has been one heck of a journey. Let me just say, there hasn't been much time off. As, I say many times, I have lived, I have loved and I have learned, which should be capitals, LEARNED. It's been a cram packed lifetime but if I didn't waste it, and I did learn the lessons then I can breathe in a very deep breath of satisfaction.
Speaking of Jessica, she is one amazing daughter. She has filled my life with the most wonderful things. I love you beyond words Jessica Nadine, I'll never forget the night you were born in your Nan's house, how I looked at you and felt incredibly happy to see your face. You lit up my world, and continue to shine like the Sun in my life. This is the song for you. Van Morrison, Have I told you lately that I love you...
I've only another day of anti-biotics to take for the breast infection I developed last week. I still find it odd that I've had a breast infection, where did that one come from! Ah well, hopefully I can put it behind me with the pile of other experiences I'm building from my experiences with bowel cancer. The pile mounts!
Following on from what I said at the end of my previous blog, about questioning sharing my experiences in public: I am a private kind of person in many ways. I'm not particularly up front when it comes to sharing details of my life with anyone. If people from around the World want to find out what I have to say about my journey through bowel cancer then that's another matter. It has been a challenge these past two years, to share parts of my journey through the group my daughter Jessica set up, which is, Judith McGuinness cancer support through collective thinking. It's been worth it to see how the group has evolved into almost an online community. I've had countless private messages from people who are members of the group asking about the symptoms I developed before I was diagnosed with bowel cancer. I've had messages from people telling me they are going to see their G.P., or they have been referred to hospital for a Colonoscopy, which examines the inside of the bowel via a camera. There has been a lot of sharing on the Group through exchanges and interactions. My daughter first set up the Facebook group so that there was a central point for information regarding my treatments and operations. It has been a place where people can leave a message for me or ask questions. Before Jessica set up the Facebook group page, my phone would ring off the hook and I couldn't respond to all the emails and texts that were coming in. Now, it's much easier for everyone to keep updated. I'm now getting used to my own blog space, it's difficult to know what and how to say something, hopefully I'll get used to it in my own way. Sometimes I feel there is so much to say I can't make a start, where to begin! Now, coming back to why I'm sharing myself and my family through this blog: The simple answer is because it may make a difference to someone, somewhere. If one person, one family, doesn't have to go through what I and my family have been through these past two years, then, it is worth doing. For two years I've been through the most intense, challenging and demanding periods of my life. I feel like I've been thrown across jagged rocks by a stormy sea, battered. The years before were hardly a walk in the park. For 15 years I've been intensely involved with first my Dad, and then my Mum over 12 years, with Dementia. What with the twists and turns of my own life it has been one heck of a journey. Let me just say, there hasn't been much time off. As, I say many times, I have lived, I have loved and I have learned, which should be capitals, LEARNED. It's been a cram packed lifetime but if I didn't waste it, and I did learn the lessons then I can breathe in a very deep breath of satisfaction.
Monday 13 February 2012
Infection update:
I'm feeling better again today, and after lying in until midday I got dressed. Alan and I had a short walk down to the local fishery for lunch, which was fresh fish in their own batter, hand cut chips and mushy peas, topped up with a squeeze of fresh lemon, and their home made tartar sauce. Just what the Doctor ordered! After the delicious lunch we continued with our walk for another 15 minutes. It's been a few days since I was outdoors and I felt a bit rocky on my feet, but I soon forgot about that as my eyes found the horizon, I'd missed that. Apart from all the usual niggles in my ovaries and bowel area, I'm feeling on the better side of the breast infection. Infections didn't hit me as hard as this before I had cancer. I remember getting an infection from the PICC line I had inserted in my arm to administer chemotherapy. (A PICC line is a long, soft, flexible tube, or catheter, that is inserted through a vein in the arm. The PICC catheter is designed to reach one of the larger veins located near the heart.) It floored me, I couldn't do anything. This is how I felt with this breast infection, I found it difficult to even talk. It sounds ridiculous but that's what it was like. When I think about it though, I'm fatigued to start with, cancer cells are running through my body, so, put the infection in the mix and then it makes sense. I always associated breast infection with breast feeding so this was new to me. I've been thinking about why I'm sharing this part of my journey through cancer with anyone who wants to read my blog. I am naturally a private person so these past two years of sharing my experiences have been about me being out of my comfort zone and in the public eye with my day to day life. I can go into this more on my next blog...
I like to see the horizon.
I'm feeling better again today, and after lying in until midday I got dressed. Alan and I had a short walk down to the local fishery for lunch, which was fresh fish in their own batter, hand cut chips and mushy peas, topped up with a squeeze of fresh lemon, and their home made tartar sauce. Just what the Doctor ordered! After the delicious lunch we continued with our walk for another 15 minutes. It's been a few days since I was outdoors and I felt a bit rocky on my feet, but I soon forgot about that as my eyes found the horizon, I'd missed that. Apart from all the usual niggles in my ovaries and bowel area, I'm feeling on the better side of the breast infection. Infections didn't hit me as hard as this before I had cancer. I remember getting an infection from the PICC line I had inserted in my arm to administer chemotherapy. (A PICC line is a long, soft, flexible tube, or catheter, that is inserted through a vein in the arm. The PICC catheter is designed to reach one of the larger veins located near the heart.) It floored me, I couldn't do anything. This is how I felt with this breast infection, I found it difficult to even talk. It sounds ridiculous but that's what it was like. When I think about it though, I'm fatigued to start with, cancer cells are running through my body, so, put the infection in the mix and then it makes sense. I always associated breast infection with breast feeding so this was new to me. I've been thinking about why I'm sharing this part of my journey through cancer with anyone who wants to read my blog. I am naturally a private person so these past two years of sharing my experiences have been about me being out of my comfort zone and in the public eye with my day to day life. I can go into this more on my next blog...
I like to see the horizon.
Sunday 12 February 2012
I'm sharing 'our' song which was played at our wedding. This is one of my special things. We would laugh and dance to this track... for Alan, our special song..
Saturday 11 February 2012
I had another lousy day yesterday, but my temperature was rising along with some of my other symptoms so Alan called the Out of hours Doctors service. An hour later a Doctor called back to talk to me and ask a few questions. At 2am this morning we ended up driving to the next town, to their Clinic which is open out-of-hours. I saw the female Doctor there who wanted to examine me. She confirmed what I told her I thought it was on the telephone. I had got an infection in my breast, and my temperature was rising. No wonder I felt so awful for two days. On top of how I feel every day, which is fatigued, I wondered how I was going to function again. When I found out it was an infection I felt a sense of relief, that I wasn't going to feel like this all the time. How I felt reminded me of how I used to feel on Chemotherapy, and my white blood cell count was low. Just getting up the stairs was an effort. I'm now on Anti Biotics again so I have to manage my food schedule so that my stomach is empty when I take the Capsules, and that it stays empty for an hour afterwards. Now that will take some management! This is the third infection I've had in the past few weeks, all in different parts of my body. Could I worry about it, yes, will I, not so much, but I am realistic, and will keep a part of my mind reserved for thinking about the fact that I've had three infections recently. I shut the door to that part of my mind when I've thought about it, but I can open it up anytime I want to have a think about infections, that way it won't spoil my days, which are pretty valuable.
My days are valuable
Friday 10 February 2012
As each day passes, I'm understanding more and more about the need for energy conservation to manage the fatigue I'm experiencing. I've not done a fantastic job on conserving energy so far this year because it's in my nature to burst into the day to find ways to mingle the enthusiasm I feel inside with the world I see outside. This could involve being outdoors and having a lovely walk, or looking at the lovely Moorland around me, or chatting and giggling with my precious family. Experiencing limitations can be frustrating until I've mentally adjusted to the ever changing, and new me of the day, on any day. I had a frustrating day yesterday with no energy. I felt like I couldn't do anything. I began to wonder if I had flu later in the evening when I was shivering every now and again. I've decided to have a dressing gown day today so I'm not doing very much, just small things and then sitting down again. I was in bed until Midday, where I felt I needed to be.
I enjoy the experience of enthusiasm, but this is an area I'm having to manage and rein in to conserve energy. It's becoming more about holding onto it, the opposite to the me I used to be.
I'm adjusting to this new part of my journey with cancer.
Today, I'm sharing another of my special things which is my all time favourite Violin concerto, this would be:
Jean Sibelius Violin concerto, and my favourite violinist Maxim Vengerov
This piece has been a long time companion of mine.
To my Grandchildren, Luke, Ella, Joe and Jasmine, my husband Alan, my children Jake and Jessica. If you make a trail back to this blog, this is one of my favourite things.
The first movement, and then especially as the music builds from around 18 minutes and 23 minutes is just, well, it never fails to move me.
To my Grandchildren, Luke, Ella, Joe and Jasmine, my husband Alan, my children Jake and Jessica. If you make a trail back to this blog, this is one of my favourite things.
The first movement, and then especially as the music builds from around 18 minutes and 23 minutes is just, well, it never fails to move me.
Thursday 9 February 2012
I'm hoping to leave a trail of my special things on my blog. As long as this site stays open then so will my blog, my family can trace back to find my special things. Hopefully there will be many pieces of music I love, and have enjoyed listening to. Tchaikovsky will be high on my list of special things, special music, which I have enjoyed and loved over the years. The past four years, especially the last two years, have been the most difficult years because that's when I started to be affected by Bowel cancer. What a whirlwind these past two years have been, I feel sick thinking about how sick I've felt undergoing treatments and surgeries. Life has been many things to me. Intense in every waking experience. I've experienced life in my core, the core of who I am. I have watched, I have listened, I have participated in life. What a privilege to share my life with so many special people.
I have lived, I have loved and I have learned.
I've been playing one of my favourite pieces of music for the past few days. When my two children were around 3 and 5 years old I played it a lot for some reason. I've found over the years, if I need to cry this will do it. The first and last movements are the ones I listen to, and the ones that I feel closest resemble my life in music, which is a great deal of feeling.
I'm hoping to leave some special things for my 4 Grandchildren who I love with all my heart, and to my husband Alan, daughter Jessica and son Jake, who mean more to me than any words I can use to try and tell you.
I love you all my dear family.
"Pathetique" Symphony number 6 is one of my special things, I join in with the conductor for this one. It sums up my life in music, the intensity of experience and the depth of feeling I've experienced...
The first movement finishes just around 19 minutes 12 seconds...
The 4th movement, which is also one of my specials, and probably my favourite starts at 37 minutes... and is the last movement. By 40 minutes I'm with the conductor who has teared up eyes.
I like the movements in between, but these two pieces sum up my life. I feel at home in this music.
...My dear Grandchildred, Alan, Jake and Jessica, if you follow the trail back to here, I love you always and forever. Turn it up loud, it's the only way.
I have lived, I have loved and I have learned.
I've been playing one of my favourite pieces of music for the past few days. When my two children were around 3 and 5 years old I played it a lot for some reason. I've found over the years, if I need to cry this will do it. The first and last movements are the ones I listen to, and the ones that I feel closest resemble my life in music, which is a great deal of feeling.
I'm hoping to leave some special things for my 4 Grandchildren who I love with all my heart, and to my husband Alan, daughter Jessica and son Jake, who mean more to me than any words I can use to try and tell you.
I love you all my dear family.
"Pathetique" Symphony number 6 is one of my special things, I join in with the conductor for this one. It sums up my life in music, the intensity of experience and the depth of feeling I've experienced...
The first movement finishes just around 19 minutes 12 seconds...
The 4th movement, which is also one of my specials, and probably my favourite starts at 37 minutes... and is the last movement. By 40 minutes I'm with the conductor who has teared up eyes.
I like the movements in between, but these two pieces sum up my life. I feel at home in this music.
...My dear Grandchildred, Alan, Jake and Jessica, if you follow the trail back to here, I love you always and forever. Turn it up loud, it's the only way.
Wednesday 8 February 2012
This beautiful photograph was taken by my friend Amanda in Brisbane, Australia. She saw the rainbow yesterday as she was driving and pulled over to take the photograph for me, thank you Amanda!Today was an important day for us because my Macmillan Nurse came to visit. She last came to see us about a year ago. At that time, today seemed a long way ahead, although I had no idea when I'd be meeting up with her again really. I only knew that when I would meet her again this disease would have progressed through my body, or treatment had stopped working. What happened was both of these things. When discharged from Oncology, many cancer patients experience a feeling of being cut off from what felt secure, which is your treatment plan, and many appointments with the Oncologist, and scans every three months. When you are in this environment of the treatment plan you can feel like you're tackling the cancer head on, and being as proactive as possible to stop the cancer cells multiplying and spreading throughout your body. There is the routine of all this entails, and also all the people you interact with, especially on the chemo day unit, where the chemo patients sit and have their treatments together in a circle, tv in the corner, drinks and food to hand, talk, or no talk, there was a relaxing feeling in that ward with others going through their own journey. It's a odd concept, that a day ward where Trained Nurses administer chemotherapy and anti cancer drugs could be so peaceful and relaxing. It was very relaxing.
I was discharged from Oncology because my last scan on the 4th January showed the anti-cancer drug Cetuximab had stopped working. Alan and I felt like balloons floating off in the sky, cut loose from two years of intense treatment plans, operations and recovery. I really looked forward to my Macmillan Nurse visiting again so we could chat and talk about what next. She stayed almost two hours answering our questions, and she was very good at making us feel like we had a comfort blanket around us. She is good at her job! What's next for me is an appointment with the Consultant and Occupational Therapist at the Hospice. I need to see the Therapist for some strategies for coping with extreme fatigue. I went to the Hospice yesterday to meet up with the Complementary Therapist who gave me a taster of my chosen treatment which was reflexology. We made appointments for 3 sessions which I can have at the hospice. The session went well, I found the Hospice to be very relaxing and a nice place to be. There was a feeling of peace and serenity, and when I lay on the treatment table I felt tears welling up, almost relief, to be able to relax with nothing to think about, or worry about. I felt like I was being prepared for death, but it wasn't awful and dark, I felt a great sense of humility and love. Two words which are inadequate for how I felt, but I can't summon any others to describe the feeling.
Monday 6 February 2012
I've been spending quiet a lot of time recently, sorting through all my work things, mainly paperwork. I must have filled two big bags with recycling paper and rubbish. It has been time spent in an intense feeling, there were poignant moments. No, the whole time I was clearing out was poignant. I'd spent at least 10 years studying, and increasing what I could offer in my work as an Holistic Therapist whilst living in Dubai, U.A.E. All my diplomas, course work, case studies. Hours and hours of work all ready to bite the dust . The stress management power point I wrote, and put together for sessions, the long hours working on all aspects of my business, including my website, all gone. I remember how difficult it was to get my website designed and up and running. I had two stabs at it, the second time I was ill. I had cancer both times and didn't know. I forced through feeling ill to make it happen. I remember thinking it's as if I'm working against something here. Why is this so difficult, as if it's not meant to happen. Three months later I was told I had stage 4 - advanced Colon Cancer.
Friday 3 February 2012
The 3rd of February 2012, is as good a date as any to do my first post on my blog. Two years ago today I had a colonoscopy procedure. A colonoscopy is a test that provides an inside look at your colon and rectum. A doctor uses a flexible tube (called a colonoscope) that has the ability to snip off polyps. The colonoscopy didn't last very long because the specialist nurse found an apple-core lesion within the first few minutes. There and then he told me I had cancer and that it was almost causing a complete blockage. He told me I had a huge mountain to climb. Since that day, I've been climbing a huge mountain...
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