There was a time when I came online and there were lots of cyber friends here and lots going on. It doesn't feel like that any more. I used to spend hours reading every post on Inspire and usually answering every one, but I don't go there any more because I don't feel that I belong there any more.
Is this the Metastatic Breast Cancer equivalent of a Mid-Life Crisis? I was diagnosed with breast cancer over 6 years ago, and in January it will be 6 years since they finally twigged that I really did have a problem with my hip and I was Stage IV all along. Statistically I have been dead for over 3 years ... there is only one thing 'wrong'. I'm not dead though, if truth be told, I wouldn't mind being dead.
My main problem with getting support is that I am not dying quickly enough. I had CBT therapy, but they cut me free with the promise that if I had problems within six months I could just go straight back into the system. They lied. When I called I was told I would have to referred all over again and there was not guarantee that I would see the same therapist. I saw the counsellor at the local Hospice for a while, but again I didn't die quickly enough so they discharged me. When you are in no-mans-land of being stable no one is interested in supporting you. My brother and his family are too busy to do anything to help me, except occasionally to ask me round for a meal. If I drop in I feel as though I am intruding, or no one is in. That said my niece is supposed to come an help me clear some stuff out of the house next week, but I'll wait to see if she actually turns up. It is usually the case that if there is some paint to watch dry somewhere that comes first.
Part of the problem is that so few people are aware of MBC because there are three stages of breast cancer ... being a survivor, having a recurrence and end of life/death, and most folks know all about the first 'Pink' stage, wants to ignore the second, and only vaguely acknowledges the third when it is quoted to raise money for a 'cure'; aka treatment for Early Stage Breast Cancer.
At the moment I am off work with depression and stress from having worked the equivalent of over one and a half extra weeks in the last 7 weeks and now being told I have to get out of the office I have been in and go into the big main office with people who made a friend's life such a misery when she worked there that she left ... or in a converted cupboard. What is even worse is that the people moving in to the office I was in don't even work for the organisation!
Do I feel as though I can express any of this ... no. Why? Because breast cancer is Pink and it is all about survivors who on the whole would rather eat something from the jungle than admit that we exist. After all be don't want to stress them out, do we? They are the important ones. They have Primary BC and they are Survivors.
How can I express to my line manager the embarrassment of not being able to just get up and walk away from the chair because of the pain in my hips and lower back? How do I explain that it is good to be near the loos because sometimes I just have to 'use the facilities'? How do I explain that I don't want to be seen falling asleep at the mouse because I am so tired, or I just plain forget what I am doing and express my frustration about this? How do I explain that sometimes I just sit and cry because I am tired, fed up, a friend has just died, I want the pain to go away and a myriad of other reasons. How can I explain that sometimes I just need to be able to pull myself together without the critical stares of others? How do I solve a problem like Vicki?
Sunday, 27 October 2013
Saturday, 26 October 2013
We are all in this together
We all have breasts. They come in as many shapes, sizes and colours as there are people on this earth. Few people are happy with what they have - too small, too big, a bit droopy - but if cancer is found in them it can be ... well embarrassing, if you are a man. But wait!
- Did you even realise that men can get breast cancer too?
- Did you realise that because breast cancer is considered to be such a feminine thing that there is little information available, or encouragement to get any changes or lumps in the breast checked out properly by a doctor.
- Did you realise that nearly all the medical information about treatments is written with only women in mind.
Sunday, 29 September 2013
Crabby and pissed off, and it's only partly Pinktober
Pardon my French, but at the moment I am in a bit (he-hum) mood. Pinktober is on its way and I am not looking forward to it. All the smiling and pretending that everything is great, that buying a pink ribbon really will make a difference when I know that it is a Pantomime. The heroes (hooray) and the villains (boo) and, worst of all, the happy ending.
Things are not good at work. The bloke I work with has been in a foul mood ever since the beginning of term and on Wednesday I eventually said why didn't he go home and he blew up. He was sitting there saying he had nothing to do so I asked him to do a couple of things and he growled that he was busy of facebook. I was trying to talk to someone on the phone and he starts playing a trailer for a TV series or film without the headphones plugged into the machine. Give him something to do and he bitches, leave him alone and he groans and the final straw was when he started tapping his pen on the desk. I've actually come to the conclusion that he was doing this on purpose. My suggestion that he went home was because he really hates being there and wasn't going to offer to help me with work that was marked for his attention as well as mine because he likes to pick and choose what he wants to do. He didn't come in on Thursday and started sending all this stuff through for me to do and when I asked that he didn't do so he emailed back, and I quote "Its what you getting F****** paid for you lazy bitch". I have tried leaving him to sulk, I have tried letting him pick what he wants to do, which is basically nothing for any length of time, and I have tried getting him to do other bits. None of it works. He just glowers in the corner like a spoilt child who is having to realise that he is in his late 50's and has a crap job which he chose to come back to after the summer holidays. I think I am beginning to understand why he has had a bewildering number of jobs over the years. He can't get another job, though heaven only knows he has spent enough work time applying for them on line and just doesn't want to accept that he is a minion and not management any more. On top of that the college has agreed this year to pay for him to do a teaching qualification, which as a member of staff he doesn't have to pay for! All he has to do is just get on with the job for an academic year then he might be able to do some teaching.
I fully admit that I am not always a ray of sunshine and which the systems problems that we have had this term I haven't been in the best frame of mind, but I accept that it is a job, and who else is going to employ someone diagnosed with Metastatic Breast Cancer five years and eight months ago, and so statistically is living well into borrowed time. Well all I can say to my colleague is put your big boy pants on and get on with it.
On top of this I have been trying to get some information from Breast Cancer Care, the only UK BC charity that takes an interest in Metastatic Breast Cancer, about what they are planning for 13 October - what they call 'Secondary' Breast Cancer Day. As of today, 29 September 2013 there is no information available. Like we can all make plans at such short notice and support whatever they are going to focus on. I see they have removed their most recent summary report which was for 2011, but basically this is the same information as they had up two years ago. http://www.breastcancercare.org.uk/campaigning-volunteering/campaigning/current-campaigns/spotlight-secondary-breast-cancer . I could become a Breast Cancer Voice, but I don't think they would want me because I am too vocal about what is not being done. I'm not Pink. At the moment I am a dark shade of blue.
Things are not good at work. The bloke I work with has been in a foul mood ever since the beginning of term and on Wednesday I eventually said why didn't he go home and he blew up. He was sitting there saying he had nothing to do so I asked him to do a couple of things and he growled that he was busy of facebook. I was trying to talk to someone on the phone and he starts playing a trailer for a TV series or film without the headphones plugged into the machine. Give him something to do and he bitches, leave him alone and he groans and the final straw was when he started tapping his pen on the desk. I've actually come to the conclusion that he was doing this on purpose. My suggestion that he went home was because he really hates being there and wasn't going to offer to help me with work that was marked for his attention as well as mine because he likes to pick and choose what he wants to do. He didn't come in on Thursday and started sending all this stuff through for me to do and when I asked that he didn't do so he emailed back, and I quote "Its what you getting F****** paid for you lazy bitch". I have tried leaving him to sulk, I have tried letting him pick what he wants to do, which is basically nothing for any length of time, and I have tried getting him to do other bits. None of it works. He just glowers in the corner like a spoilt child who is having to realise that he is in his late 50's and has a crap job which he chose to come back to after the summer holidays. I think I am beginning to understand why he has had a bewildering number of jobs over the years. He can't get another job, though heaven only knows he has spent enough work time applying for them on line and just doesn't want to accept that he is a minion and not management any more. On top of that the college has agreed this year to pay for him to do a teaching qualification, which as a member of staff he doesn't have to pay for! All he has to do is just get on with the job for an academic year then he might be able to do some teaching.
I fully admit that I am not always a ray of sunshine and which the systems problems that we have had this term I haven't been in the best frame of mind, but I accept that it is a job, and who else is going to employ someone diagnosed with Metastatic Breast Cancer five years and eight months ago, and so statistically is living well into borrowed time. Well all I can say to my colleague is put your big boy pants on and get on with it.
On top of this I have been trying to get some information from Breast Cancer Care, the only UK BC charity that takes an interest in Metastatic Breast Cancer, about what they are planning for 13 October - what they call 'Secondary' Breast Cancer Day. As of today, 29 September 2013 there is no information available. Like we can all make plans at such short notice and support whatever they are going to focus on. I see they have removed their most recent summary report which was for 2011, but basically this is the same information as they had up two years ago. http://www.breastcancercare.org.uk/campaigning-volunteering/campaigning/current-campaigns/spotlight-secondary-breast-cancer . I could become a Breast Cancer Voice, but I don't think they would want me because I am too vocal about what is not being done. I'm not Pink. At the moment I am a dark shade of blue.
Saturday, 21 September 2013
4 April 2014 Stage IV (Metastatic) Breast Cancer Day in the UK
If anyone is interested in this I have started a facebook page https://www.facebook.com/groups/1420485158172456/
The Haven is coming my way.
In the UK we have a charity now called The Haven, formerly the Breast Cancer Haven, which I have always wanted to be able to go to. Inevitably is started in London, then they set up one in Hereford and then Leeds. Now they are raising funds to open a Haven in my area, and this news comes hot on the heels of finding that there is going to be a Maggie's Centre in Southampton.
Trying to get to London for early in the day is a long journey by trains packed with commuters, and it also costs a lot of money so it has always been out of the question for me; and yet the approach of The Haven, like that of the Penny Brohn Cancer Centre, is very holistic with alternative therapies, nutrition and Mindfulness Based Stress Reduction meditation at its core. Dr Caroline Hoffman PhD from The Haven was the person who facilitated the MBSR trial that I took part in and which was actually only for those of us with Metastatic Breast Cancer. This was done through Southampton General Hospital where my oncologist is based. This sort of approach is exactly the approach I have taken to learn to deal with having incurable cancer.
http://www.thehaven.org.uk/how-you-can-support-us/haven-wessex-appeal
Maggie's Centres are similar, but maybe just a bit more of a drop in type of place and are for those with all types of cancer. The started in Edinburgh and are spreading. They deal with Financial advice, nutrition, support groups for patients and families, exercise, creative writing etc.
http://maggiescentres.org/southampton/introduction.html
The most interesting thing will be to see what they do for Metastatic Breast Cancer, and how inclusive they would be. I feel very wary of getting involved with cancer related things because I am 'out' about being Metastatic and there is always that awkwardness about now people react to this. I guess it is a tiny bit like being gay and coming out. It's that 'Oh!' moment followed by a silence as their brain recomputes what to say next. It is just a fact of my life; can't change it, so get on with it.
Only a couple of days ago I was having a day dream about winning a huge amount on the Lottery and how I would tell certain people at work to hand in their notice because I was setting up a Metastatic Breast Cancer Centre, probably in the same village that I work in, and grew up in, because of the good transport links. Who says dreams don't come true?
Trying to get to London for early in the day is a long journey by trains packed with commuters, and it also costs a lot of money so it has always been out of the question for me; and yet the approach of The Haven, like that of the Penny Brohn Cancer Centre, is very holistic with alternative therapies, nutrition and Mindfulness Based Stress Reduction meditation at its core. Dr Caroline Hoffman PhD from The Haven was the person who facilitated the MBSR trial that I took part in and which was actually only for those of us with Metastatic Breast Cancer. This was done through Southampton General Hospital where my oncologist is based. This sort of approach is exactly the approach I have taken to learn to deal with having incurable cancer.
http://www.thehaven.org.uk/how-you-can-support-us/haven-wessex-appeal
Maggie's Centres are similar, but maybe just a bit more of a drop in type of place and are for those with all types of cancer. The started in Edinburgh and are spreading. They deal with Financial advice, nutrition, support groups for patients and families, exercise, creative writing etc.
http://maggiescentres.org/southampton/introduction.html
The most interesting thing will be to see what they do for Metastatic Breast Cancer, and how inclusive they would be. I feel very wary of getting involved with cancer related things because I am 'out' about being Metastatic and there is always that awkwardness about now people react to this. I guess it is a tiny bit like being gay and coming out. It's that 'Oh!' moment followed by a silence as their brain recomputes what to say next. It is just a fact of my life; can't change it, so get on with it.
Only a couple of days ago I was having a day dream about winning a huge amount on the Lottery and how I would tell certain people at work to hand in their notice because I was setting up a Metastatic Breast Cancer Centre, probably in the same village that I work in, and grew up in, because of the good transport links. Who says dreams don't come true?
Wednesday, 18 September 2013
Going a bit mad here ... 4.4.2013 as Metastatic Breast Cancer Day?
This year the Triple Negative Breast Cancer Foundation had its inaugural Triple Negative Beast Cancer Day on 3 March - 3.3.2013 http://www.tnbcfoundation.org/tnbcday/index.html which they are planning to continue with in 2014.
Just before they announced this I was thinking that 4.4 should be for Stage IV Breast Cancer. This is partly because the confusing I have about dates being written as two number because in the UK we put the day first and then the month, and in the US it is the month and then the day. I get confused unless the date is obvious like 13.02, because there are only 12 months in the year (see how clever I am). A friend was married this year on the third of January, which to her was 1.3.2013, but to me was 3.1.2013 - see the confusion. This led me to think that if you have the same day and the same numbered month then no one can get confused, and then the TNBCF announced 3.3.2013.
So why can't 4.4.2013 be an inaugural Metastatic Breast Cancer Day to get us away from the who Pinktober thing. No one takes any notice of us in October anyway and to be given just one day when the whole month should be more about MBC than Early Stage BC. This day, 4 April, doesn't really have to be recognised by anyone but us and then try to spread the word. We are not little children who have to ask permission to do something. We are adults with an incurable disease and we would really like people to know how little support we get, and how little of the BC research funding goes to help us. We are dying for research funding, literally.
It would be great if some of you would respond to this. I don't have many friends, and those that I do on facebook at least, have probably blocked my posts because they focus on breast cancer and they just don't want to know. Even my family never responds to anything that I post!
In fact wouldn't it be great if we could establish April and Stage IV Cancer Month ... or have I gone mad?
Just before they announced this I was thinking that 4.4 should be for Stage IV Breast Cancer. This is partly because the confusing I have about dates being written as two number because in the UK we put the day first and then the month, and in the US it is the month and then the day. I get confused unless the date is obvious like 13.02, because there are only 12 months in the year (see how clever I am). A friend was married this year on the third of January, which to her was 1.3.2013, but to me was 3.1.2013 - see the confusion. This led me to think that if you have the same day and the same numbered month then no one can get confused, and then the TNBCF announced 3.3.2013.
So why can't 4.4.2013 be an inaugural Metastatic Breast Cancer Day to get us away from the who Pinktober thing. No one takes any notice of us in October anyway and to be given just one day when the whole month should be more about MBC than Early Stage BC. This day, 4 April, doesn't really have to be recognised by anyone but us and then try to spread the word. We are not little children who have to ask permission to do something. We are adults with an incurable disease and we would really like people to know how little support we get, and how little of the BC research funding goes to help us. We are dying for research funding, literally.
It would be great if some of you would respond to this. I don't have many friends, and those that I do on facebook at least, have probably blocked my posts because they focus on breast cancer and they just don't want to know. Even my family never responds to anything that I post!
In fact wouldn't it be great if we could establish April and Stage IV Cancer Month ... or have I gone mad?
Thursday, 12 September 2013
Watching paint dry is better than this!
So is the start of a new academic year where I work. One week ago I went in to check that I could get on the systems and change my password etc only to find that the office had been stripped of shelves, drawer units and some other things, like the kettle. An extra desk had been shoved in making it necessary to climb over the desks to get to the windows to open them, because someone nicked the window pole last term. I thought that was bad.
Went into work on Monday to find that the systems aren't working properly and some of the functions that I rely on to do my job have disappeared altogether. We were told not to come in on Tuesday because they might be able to sort it ... Wednesday couldn't do anything ...Thursday (today) couldn't do anything and have been told not to go in tomorrow. It has been so mind numbingly boring that I was sure that somewhere there must be some paint to watch dry which would be more interesting.
What is even worse is that some people are rushed off their feet and no one will let me help them, partly because I don't have access to, and training on, their systems. And, because everything is no computer based there isn't even some filing to help out with.
Who would have thought that washing up my mug at the end of the day would be the highlight of the day?
Went into work on Monday to find that the systems aren't working properly and some of the functions that I rely on to do my job have disappeared altogether. We were told not to come in on Tuesday because they might be able to sort it ... Wednesday couldn't do anything ...Thursday (today) couldn't do anything and have been told not to go in tomorrow. It has been so mind numbingly boring that I was sure that somewhere there must be some paint to watch dry which would be more interesting.
What is even worse is that some people are rushed off their feet and no one will let me help them, partly because I don't have access to, and training on, their systems. And, because everything is no computer based there isn't even some filing to help out with.
Who would have thought that washing up my mug at the end of the day would be the highlight of the day?
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