There was a time when I made most of my own clothes. I never learned tailoring but I could turn my sewing machine to blouses, dresses, skirts and the like. I would have to say that I have never been a great one for being at the forefront of fashion, I just don't have the figure for that but when my sewing machine gave up, so did I.
A few months ago I got another sewing machine which will take a while to get used to because the foot pedal works the 'other' way round, and the lever to lift the sewing foot is in completely the 'wrong' place, but it is nice to have a machine again. I bought a skirt a couple of years ago and the first time I wore it I stepped on the hem as I was going up stairs and ripped it along a seam. I have been able to mend that and wear it again, but the main reason I got it was to be able to make some blocks for the Lost Inspiration Quilt in memory of friends who have died of Metastatic Breast Cancer. I finished the first three blocks last weekend and posted them off to Texas on Monday because Theresa and Sheryl will be working together this weekend to start putting the blocks together.
It has been a long time since I did any patchwork quilting. My mother and I made one in 1972 because she needed something to do, and had plenty of offcuts from dressmaking, because between February and April that year I had two operations and in between my father nearly died of the emphysema he had when I was growing up. He died six years later. Funnily I can still remember the clothes that she had made with the materials that we were using. My mother made nearly all my clothes when I was growing up and before she was married she had worked for Singer's, the sewing machine people. Mu mother was in the WRAF (Woman's Royal Air Force) during the War and was posted out to Paris in 1945. She hoped to be de-mobbed out there because she wanted to train to be a pattern cutter, and where better to do that than Paris? Sadly her father was dying so she had to come home and was eventually de-mobbed in the UK.
The Lost Inspiration Quilt is named because of the friends I have lost from the Inspire forum, the Inspirettes as I call them. I feel strongly that we need to give a face to those who have died from this disease, and not just count them as another statistic. Melissa died leaving 5 children, the youngest of which was only about 3 years old. Lisa left four children to mourn her loss for the rest of their lives and the youngest was about 12 when she died. If we just quite the fact that 40,000 people will die of MBC this year in the US, and 11,000 in the UK that will have a limited impact. Tell them that Edwina, Marsha, Patsy, Maureen, Karis, Gilda, Kristine, Laurie, Barbara, Alecia, Renee, Christine, Bobby, Linda, Lisa, Ann, Deborah, Pati, Irene, Erice, Julie, Kelly, Kelly, Melissa, Wendy, Kim and Laura have died in the last four months, and that they are just the ones I know about, well somehow it makes it personal. It makes it personal because it is personal. They all left people who will miss them forever and a day. We need to make sure that the day will come when there are treatments that at the very least turn this disease into a chronic disease, or better still a cure.
Friday, 15 February 2013
Saturday, 9 February 2013
Quilting and a Quandery
After sleeping for about 12 hours I was up before 6am and getting ready to spend the morning waiting for a delivery. The morning wasn't much of a loss because it was grey and I filled in the time getting some quilting done and some new blocks cut out. It is always difficult to know which side of the house a delivery is going to come. The back of the house actually faces out on to the street, because originally access was going to be at the front of the house, which is now facing away from the road. Also because I live in a small terrace of houses sometimes people can't find their way up the path between two terraces to be able to find the front of the house anyway.
So; have rotary cutter and cutting mat and will cut out to my heart's content. I am still working on the Quilt blocks for what I call the Lost Inspiration Quilt in memory of friends who have died from Metastatic Breast cancer. The trouble is that I am not sure what to say about each of those I am doing a block for, or at least for the first friend. What do you say about someone else? How should I use her words to express her story? Do I just give the bare facts that she was diagnosed as Stage 3 in 2006, and Stage 4 in 2009. He mother and best friend died in February 2009, her sister had committed suicide at the age of 42 in 1989, her father was diagnosed with Alzheimer's when she was already Stage 4 and she had no support from her brother and his family. Do I tell how lonely she was and how the only person that really gave her any support was her boss. One co-worker had actually asked her how she had enjoyed her time off when she went back to work after one treatment break.
Hope do we portray the loneliness of a Stage 4 diagnosis? The knowledge that we are going to be killed by this dis-ease. Can you imagine living with that knowledge, a father with rapidly advancing Alzheimer's, the recent loss of your mother, the lack of support from your remaining sibling and the trauma of having to tell your parents over twenty years before that their elder daughter had taken her own life. But there was also a journey to some form of self-empowerment of acceptance. This is not a case of giving up, but of not allowing cancer the power of taking your life as well as causing your death. This is a very individual journey, and one that in my experience has moments of complete despair, great job, peace, anger, contentment and acceptance of our own humanity on so many levels.
I have come to accept my own frailties of character and the sorrow of not having lived the kind of life that I may have, but there again what is the point of fretting about this now? I can't go back and change anything. I will not marry, and I will not be able to have children, but it is, what it is, so all that is left is to make the most of the time that I do have. In some ways the present has been so much more fulfilling and complete than before. I no longer worry about what others think of me, or of pleasing others. I do things that have meaning to me and that I want to do.
This is what I see as the gift that cancer has given me. It has cleared a lot of the mess out of my life, it has pared it down to what is essential like the sound of birds singing and just allowing myself to be happy. What more could any of us want in life and I just hope my friend managed to find some of that contentment.
So; have rotary cutter and cutting mat and will cut out to my heart's content. I am still working on the Quilt blocks for what I call the Lost Inspiration Quilt in memory of friends who have died from Metastatic Breast cancer. The trouble is that I am not sure what to say about each of those I am doing a block for, or at least for the first friend. What do you say about someone else? How should I use her words to express her story? Do I just give the bare facts that she was diagnosed as Stage 3 in 2006, and Stage 4 in 2009. He mother and best friend died in February 2009, her sister had committed suicide at the age of 42 in 1989, her father was diagnosed with Alzheimer's when she was already Stage 4 and she had no support from her brother and his family. Do I tell how lonely she was and how the only person that really gave her any support was her boss. One co-worker had actually asked her how she had enjoyed her time off when she went back to work after one treatment break.
Hope do we portray the loneliness of a Stage 4 diagnosis? The knowledge that we are going to be killed by this dis-ease. Can you imagine living with that knowledge, a father with rapidly advancing Alzheimer's, the recent loss of your mother, the lack of support from your remaining sibling and the trauma of having to tell your parents over twenty years before that their elder daughter had taken her own life. But there was also a journey to some form of self-empowerment of acceptance. This is not a case of giving up, but of not allowing cancer the power of taking your life as well as causing your death. This is a very individual journey, and one that in my experience has moments of complete despair, great job, peace, anger, contentment and acceptance of our own humanity on so many levels.
I have come to accept my own frailties of character and the sorrow of not having lived the kind of life that I may have, but there again what is the point of fretting about this now? I can't go back and change anything. I will not marry, and I will not be able to have children, but it is, what it is, so all that is left is to make the most of the time that I do have. In some ways the present has been so much more fulfilling and complete than before. I no longer worry about what others think of me, or of pleasing others. I do things that have meaning to me and that I want to do.
This is what I see as the gift that cancer has given me. It has cleared a lot of the mess out of my life, it has pared it down to what is essential like the sound of birds singing and just allowing myself to be happy. What more could any of us want in life and I just hope my friend managed to find some of that contentment.
Tuesday, 5 February 2013
Insomnia
So here I am at 3.35am writing a blog entry when I should be sleeping. Remember when it was possible to sleep all night and well into the morning? When the idea of getting up before noon seemed to be a bit of a laugh. I have several nights in a row when I sleep very badly, and then I just zonk out on another day to try and catch up at least a little bit of the lost time.
Once the brain cell engages I know that there is no point in staying in bed because I will just toss and turn and make things worse. So frequently I will get up and 'play' on the computer until I get tired enough to need to go back to bed. Right now I am tired, but the brain cell is buzzing.
Tonight I forgot to put the radio on quietly to help me sleep. Somehow having the radio buzzing away quietly in the background really helps me to sleep. I go through phases where this helps, and others when it doesn't and I need complete silence to drift off to sleep. It really is just a matter of finding what suits you at the time.
If I am very anxious about something I try to use visualisation techniques and Mindfulness to calm my mind down and allow the arms of Morpheus to close around me. By distracting the mind and taking it to a place and time when I was happy and felt good I can allow the whole of my body to relax more. A vital part of this is to concentrate on the breath; the cooler air coming in through the nostrils and then the slightly warmer air coming out. Mix that with the visualisation of a beautiful view from a hill on the North Devon coast and ... well I think I need to go back to bed now ...
Once the brain cell engages I know that there is no point in staying in bed because I will just toss and turn and make things worse. So frequently I will get up and 'play' on the computer until I get tired enough to need to go back to bed. Right now I am tired, but the brain cell is buzzing.
Tonight I forgot to put the radio on quietly to help me sleep. Somehow having the radio buzzing away quietly in the background really helps me to sleep. I go through phases where this helps, and others when it doesn't and I need complete silence to drift off to sleep. It really is just a matter of finding what suits you at the time.
If I am very anxious about something I try to use visualisation techniques and Mindfulness to calm my mind down and allow the arms of Morpheus to close around me. By distracting the mind and taking it to a place and time when I was happy and felt good I can allow the whole of my body to relax more. A vital part of this is to concentrate on the breath; the cooler air coming in through the nostrils and then the slightly warmer air coming out. Mix that with the visualisation of a beautiful view from a hill on the North Devon coast and ... well I think I need to go back to bed now ...
Sunday, 3 February 2013
I hate passwords
I hate passwords and sites that seem to just decide that your password is no longer valid. I've just spent five minutes trying to log back in to this blog and I was seriously thinking on strangling the mouse! It's ok mouse, it wasn't your fault, I know that, but you were just the first thing to hand at the time. I don't want to be told that my password was changed 17 days ago, when I know that it wasn't, so do this and then do that and set a new password (and you are NOT allowed to use a previous password) which has to be longer that this, but shorter than that ... blah.
Mind you, wouldn't it be great if we could have a password to life that we could just reset every now and then and then carry on? Could we do that with cancer? Find out where things went wrong and then just change the password that was used at that point and continue on?
I have, however, reached a point where I don't think that I can imagine my life without cancer and this is partly because I didn't have much of a life before cancer. Not a life that meant anything anyway. I really do appreciate life far more these days, and I feel far more connected to society and the world around me. My life has changed a lot in the last 10 years, but especially in the last 5 years. I think I have come to value myself much more than I ever used to. I think of myself as having a positive contribution to make, even if it is just to show that you can live with incurable cancer.
The key word there for me is with. I probably will never get rid of the little beastie but I have learned to co-exist with it by putting it in its place which is in my life, but not at the centre of my life. That area of my life is reserved for doing things that have meaning to me, if no one else. The centre of my life has become about fulfilment, meaning, contributing and enjoying just being alive. It isn't about the grand things in life, about having my photo taken in front of the Taj Mahal, the Pyramids or the Grand Canyon but it is about photos of my family and people that I meet, about places that I visit, of things that I want to do. I no longer try to be perfect. I no longer try to be someone that is 'acceptable' to others. I am someone who is acceptable to me.
Mind you, wouldn't it be great if we could have a password to life that we could just reset every now and then and then carry on? Could we do that with cancer? Find out where things went wrong and then just change the password that was used at that point and continue on?
I have, however, reached a point where I don't think that I can imagine my life without cancer and this is partly because I didn't have much of a life before cancer. Not a life that meant anything anyway. I really do appreciate life far more these days, and I feel far more connected to society and the world around me. My life has changed a lot in the last 10 years, but especially in the last 5 years. I think I have come to value myself much more than I ever used to. I think of myself as having a positive contribution to make, even if it is just to show that you can live with incurable cancer.
The key word there for me is with. I probably will never get rid of the little beastie but I have learned to co-exist with it by putting it in its place which is in my life, but not at the centre of my life. That area of my life is reserved for doing things that have meaning to me, if no one else. The centre of my life has become about fulfilment, meaning, contributing and enjoying just being alive. It isn't about the grand things in life, about having my photo taken in front of the Taj Mahal, the Pyramids or the Grand Canyon but it is about photos of my family and people that I meet, about places that I visit, of things that I want to do. I no longer try to be perfect. I no longer try to be someone that is 'acceptable' to others. I am someone who is acceptable to me.
Thursday, 24 January 2013
Laugh? I cried!
A colleague said something last night that just caught me off balance and slightly more than tickled my funny bone. In short I lost it. I laughed, I cried ... I had to rush to the loo; and this morning it is still making me laugh and smile. Normally I probably wouldn't have found it more than mildly amusing, but yesterday. My laughter set off my colleague, and he was trying to leave a message on voice mail for someone and ended up having to put the phone down without being able to finish the message. He sent an Email instead!
It is a bit like the film Blazing Saddles, and the famous bean scene. Sometimes I can laugh till I cry at that, and other times I just find it mildly amusing at most or just plain infantile; but talking about infantile isn't it amazing how 'we' find it funny when someone farts. It is like being a little child again who is giggling uncontrollably with a hand clutched over their mouth as sparks of amusement coming out of their eyes. In some ways this is the secret of enjoying and appreciating life. To be able to have the wonder of a small child at even the simplest of things. We lose that as we grow up, but it is the secret of Mindfulness.
All I can say is that last night I was very Mindful! And so to Tai Chi class ...
It is a bit like the film Blazing Saddles, and the famous bean scene. Sometimes I can laugh till I cry at that, and other times I just find it mildly amusing at most or just plain infantile; but talking about infantile isn't it amazing how 'we' find it funny when someone farts. It is like being a little child again who is giggling uncontrollably with a hand clutched over their mouth as sparks of amusement coming out of their eyes. In some ways this is the secret of enjoying and appreciating life. To be able to have the wonder of a small child at even the simplest of things. We lose that as we grow up, but it is the secret of Mindfulness.
All I can say is that last night I was very Mindful! And so to Tai Chi class ...
Thursday, 17 January 2013
FIVE today
Yes it was FIVE years ago today that the hospital finally noticed that I had metastatic breast cancer. Time flies when you are having this much fun, but it is difficult to take in that I really have made it to FIVE years. When they had done the scans, done the hip replacement and were finally going to discharge me I asked that, the 'how long have I got' question ... six months possibly a year. How wrong were they?
Today I had a Tai Chi class this morning and then had to go into work; so how wrong were they again? VERY. My biggest regret is that I wasted months in a blizzard of tears, anger, despair and depression because there just didn't seem to be any hope. At that time I didn't have the internet at home and so I couldn't look for any help in cyber world and there was certainly nothing on offer at the hospital. You become a non-entity when you pass over to the other side of survivorship; the side where the is rarely anything vaguely like a happy ending. That hurt, and to be honest I felt as though I was being placed on the rubbish heap because no one cared and no one wanted to reach out a helping hand. This all goes to Early Stage Breast Cancer and ask just about anyone with Late Stage BC and they will tell you that not only do they feel that they have 'failed' somewhere along the line, but that they are made to feel that they have failed.
When you go on a breast cancer website, other than pink of course, what hits you? Survivors ... life after cancer and treatment ... moving forward. Hmmm. Not sure that anyone with late stage Metastatic Breast Cancer (MBC) feels too much at home with any of that, or are able to identify with life after breast cancer because by the mere definition of our diagnosis there is no life after breast cancer. That is precisely what we won't have. Somewhere down the bottom of the page, or tucked away at the side you might find something about MBC. However who really needs the help and support? Those who stand a good chance of surviving? Or those who have almost no chance of surviving? I have made it to five years, but the chances of my being here in another 5 years is 2%; or to put it another way there is a 98% chance that I won't make it to 10 years. Them ain't good odds by any stretch of any imagination. If you were offered those odds on a horse race you would laugh at the suggestion that you would make a bet, but ... I am now more of a lottery playing type. The odds of winning may be astronomical but I'm going to give it a flutter anyway.
What I wish most is that no one else who receives a MBC diagnosis should have to take some long to find the inspiration to believe that they do have a future. I am Spartacus! I am Woman - hear me roar.
Today I had a Tai Chi class this morning and then had to go into work; so how wrong were they again? VERY. My biggest regret is that I wasted months in a blizzard of tears, anger, despair and depression because there just didn't seem to be any hope. At that time I didn't have the internet at home and so I couldn't look for any help in cyber world and there was certainly nothing on offer at the hospital. You become a non-entity when you pass over to the other side of survivorship; the side where the is rarely anything vaguely like a happy ending. That hurt, and to be honest I felt as though I was being placed on the rubbish heap because no one cared and no one wanted to reach out a helping hand. This all goes to Early Stage Breast Cancer and ask just about anyone with Late Stage BC and they will tell you that not only do they feel that they have 'failed' somewhere along the line, but that they are made to feel that they have failed.
When you go on a breast cancer website, other than pink of course, what hits you? Survivors ... life after cancer and treatment ... moving forward. Hmmm. Not sure that anyone with late stage Metastatic Breast Cancer (MBC) feels too much at home with any of that, or are able to identify with life after breast cancer because by the mere definition of our diagnosis there is no life after breast cancer. That is precisely what we won't have. Somewhere down the bottom of the page, or tucked away at the side you might find something about MBC. However who really needs the help and support? Those who stand a good chance of surviving? Or those who have almost no chance of surviving? I have made it to five years, but the chances of my being here in another 5 years is 2%; or to put it another way there is a 98% chance that I won't make it to 10 years. Them ain't good odds by any stretch of any imagination. If you were offered those odds on a horse race you would laugh at the suggestion that you would make a bet, but ... I am now more of a lottery playing type. The odds of winning may be astronomical but I'm going to give it a flutter anyway.
What I wish most is that no one else who receives a MBC diagnosis should have to take some long to find the inspiration to believe that they do have a future. I am Spartacus! I am Woman - hear me roar.
Monday, 10 December 2012
I passed my MOT!
For those of you not in the UK an MOT test is a Ministry of Transport test which is done annually on vehicles over three years old to assess that they are road-worthy.
I had my 1 Year MOT of my left hip and they have decided that I don't need to go back there! Evidently it should last me about 20 years, so I guess I will be due for a refit somewhere around Christmas 2031. Heavens! When you see a date written down like that some how it seems as though it should have a 'Star Date' tag in front of it. So earlier in the year I was under the care of Poole, Bournemouth and Southampton hospitals and I have been fired by the first two. Not bad going! I am just working on the last one, which is the sticky one as that is where I have my cancer treatment, but at the moment I only actually have to go into the hospital once every three months because I can have my treatments in the town where I live.
For some this may be the 'holiday' season, but for me it is the birthday season because my left hip is one on the 14 December, my right hip is five on 22 January and the rest of me is 53 in February! I'm trying to thing what other bits I can have done so I can extent the season! No, maybe not. The birthday I am most looking forward to is my right hip's fifth birthday. When they did that I was told I had six months to possibly a year to live because of Metastatic Breast Cancer! Shows what they know! Worryingly it means that I only have about 15 years until it will need to be replaced, but I guess I will just have to cross that bridge when I get to it.
Oh well, no more wasting time, off for blood tests pre-treatment on Wednesday :O(
I had my 1 Year MOT of my left hip and they have decided that I don't need to go back there! Evidently it should last me about 20 years, so I guess I will be due for a refit somewhere around Christmas 2031. Heavens! When you see a date written down like that some how it seems as though it should have a 'Star Date' tag in front of it. So earlier in the year I was under the care of Poole, Bournemouth and Southampton hospitals and I have been fired by the first two. Not bad going! I am just working on the last one, which is the sticky one as that is where I have my cancer treatment, but at the moment I only actually have to go into the hospital once every three months because I can have my treatments in the town where I live.
For some this may be the 'holiday' season, but for me it is the birthday season because my left hip is one on the 14 December, my right hip is five on 22 January and the rest of me is 53 in February! I'm trying to thing what other bits I can have done so I can extent the season! No, maybe not. The birthday I am most looking forward to is my right hip's fifth birthday. When they did that I was told I had six months to possibly a year to live because of Metastatic Breast Cancer! Shows what they know! Worryingly it means that I only have about 15 years until it will need to be replaced, but I guess I will just have to cross that bridge when I get to it.
Oh well, no more wasting time, off for blood tests pre-treatment on Wednesday :O(
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