I find that my mood tends to change quite quickly when it comes to thinking about my treatment. Having Stage IV cancer means a life of uncertainty. The doctors think I have no chance of surviving this and so don't want to do anything to save my life. Okay to a certain extent I can see that, the NHS can't afford to waste money - they have management wages to pay after all, but I don't understand the concept that when things get worse they might think of doing something! But there is no indication as to how they will be able to tell when things get worse when they completely missed that my cancer had already spread before I had been diagnosed, mainly because they did not listen when I told them about symptoms. They seemed to think that it wasn't an indication of how bad it was that I was walking with a stick at the age of 47. Their criteria seems to be that you have to be knocking back the pain killers like smarties for it to be serious.
I am trying not to be difficult but it makes me very anxious and scared as this is my life, not a broken leg. I feel that I have been a failure because breast cancer is all about primary cancer and how many survive this, and not about those of us who have secondary cancer and will not survive this. They give no encouragement or tell you about ways that you can help yourself. If I had a heart attack or a stroke I would be given advice about lifestyle changes etc, but with secondary cancer - nothing.
But there are things I can do to help myself and that is why I think I am doing rather well. The doctors will say it is the Tamoxifen and the Zoledronic Acid, but I know that I only really started to get better when I changed my diet. But I already knew where to look because of information that had been sent to a friend who had stomach cancer 5 years ago (and sadly didn't make it as she was never well enough to try any alternatives to conventional medicine). Why will the NHS not at least guide patients to these alternatives? They don't have to say that it will cure, just that it MIGHT help. Think of the millions that could be saved and the hope that it would give patients that by empowering themselves they can help to heal themselves.
Hope is about small things, not "I hope I can win the lottery" or some other dream. Hope is about reality and things that are achievable. I don't view the future as a long term thing, and I'm not sure that I ever did really, but it is about next week and next month and possibly next year. None of us actually has a future because it has not arrived and we have not experienced it, but we do have the present and the past. But I can hope that the future will be better than today, and that I can have a good quality of life. After all I feel better now than I have done for years, and in so many ways having Stage IV cancer has made me a more positive and optimistic person. Without the worry of the long-term future I can have hopes for tomorrow that can be achieved.
Stage IV breast cancer thriver who believes that everyone is entitled to my opinion
Thursday, 28 May 2009
Sunday, 24 May 2009
Isn't amazing how the weather can affect your moon?
The sun has finally come out and there is warmth in it as well and that alone can really lift your mood. Also the sun synthesises vitamin D which in turn is good at fighting cancer.
I actually don't really like hot weather, nor do I sit out in the sun but I do like the idea of it being there. Today was just about perfect, not too hot and a little bit of cloud so it didn't get to be too much. Summer seems to have been a long time coming this year, and feels as though it is actually here to stay. There have been sunny days before and then it gets cold again, but this time it feels as though it will stay warm.
Warmth seems to help my aches and pains these days as well, so that it another reason to welcome the better weather. I was given some upper back exercises by the physio at the hospice recently but find that I need to have a hot shower first to loosen up the back before doing them, though for the first time today I did them before having the morning shower. It is great to get out of bed and to be able to stand up stratight without any problem.
I'm hoping the end of this week with have good weather as I want to be able to get out in the garden a bit. It is a disaster area and I bought a pruning saw recently so I can try to tackle some of the bigger tryffids so I can get in and out of the house.
I actually don't really like hot weather, nor do I sit out in the sun but I do like the idea of it being there. Today was just about perfect, not too hot and a little bit of cloud so it didn't get to be too much. Summer seems to have been a long time coming this year, and feels as though it is actually here to stay. There have been sunny days before and then it gets cold again, but this time it feels as though it will stay warm.
Warmth seems to help my aches and pains these days as well, so that it another reason to welcome the better weather. I was given some upper back exercises by the physio at the hospice recently but find that I need to have a hot shower first to loosen up the back before doing them, though for the first time today I did them before having the morning shower. It is great to get out of bed and to be able to stand up stratight without any problem.
I'm hoping the end of this week with have good weather as I want to be able to get out in the garden a bit. It is a disaster area and I bought a pruning saw recently so I can try to tackle some of the bigger tryffids so I can get in and out of the house.
Tuesday, 19 May 2009
New Career?
I have managed to get the printer up and running without too much trouble. This means that I can finally get round to printing up some more card blanks for cardmaking.
A colleague at work asked if I would do a card for her parents Platinum Wedding Anniversary - 70 years! I made it last night as I could print the wording before making the card with a design that Janet had asked me to do. When her parents married in 1939 her mother wore a corsage of three red roses with Lily of the Valley. Managed to design this on the PC and then print it off and then added decoupage roses. I was rather pleased with the results, though I now realise that I didn't take a photo of it before giving it to her. This evening I have been making wedding invitation acceptance cards for two other colleagues.
Could this be a new career? I would love to think so but the time it takes to make them means that it is not really possible to make a living at it. I only charge 50p a card just to get rid of them. It is all very well making them, but I can make far more than I would ever need to send so this gets them out of the way. At the moment the money all goes to a fund that my workplace has to raise money to build a science lab in a school in Rwanda.
Previously I have bought things from Good Gifts.com which I like as the money actually goes to buy the thing that you have chosen, whereas some other such charities will divert the money if they think there is more need. I also like the idea of practical gifts that can achieve something other than paying for advertising, salaries etc for charities. Necessary as that may be I want to be able to see what I am buying. With everything these days I tend to think that all organisations waste a lot of money and resources on image and branding when what was there before was just as good.
A colleague at work asked if I would do a card for her parents Platinum Wedding Anniversary - 70 years! I made it last night as I could print the wording before making the card with a design that Janet had asked me to do. When her parents married in 1939 her mother wore a corsage of three red roses with Lily of the Valley. Managed to design this on the PC and then print it off and then added decoupage roses. I was rather pleased with the results, though I now realise that I didn't take a photo of it before giving it to her. This evening I have been making wedding invitation acceptance cards for two other colleagues.
Could this be a new career? I would love to think so but the time it takes to make them means that it is not really possible to make a living at it. I only charge 50p a card just to get rid of them. It is all very well making them, but I can make far more than I would ever need to send so this gets them out of the way. At the moment the money all goes to a fund that my workplace has to raise money to build a science lab in a school in Rwanda.
Previously I have bought things from Good Gifts.com which I like as the money actually goes to buy the thing that you have chosen, whereas some other such charities will divert the money if they think there is more need. I also like the idea of practical gifts that can achieve something other than paying for advertising, salaries etc for charities. Necessary as that may be I want to be able to see what I am buying. With everything these days I tend to think that all organisations waste a lot of money and resources on image and branding when what was there before was just as good.
Sunday, 17 May 2009
Is technology good or bad?
I bought myself a new printer today. I got a new PC just before Christmas and my old printer won't load, though I have tried downloading drivers from the internet for it. Now it looks as though my mobile phone has given up the ghost! Technology is something we use all the time but it is only when it doesn't work that you truly realise how much you rely on it; to say nothing of how convenient it is.
Take electricity. I don't think that I use that much, but have a power cut and I then appreciate how much of it I do use, and for how many things. No power? I'll listen to the radio - no that runs off electricity. Can't use the cooker so no hot food and can't even boil water.
I thought it wouldn't matter that I didn't have a printer, I don't use it very much but when I do it is for things that I can't do elsewhere. I make cards to sell for charity and I have my own logo that I use on the cards. This means printing on custom paper sizes for the different size of cards that I make. I also use it for wording as my handwriting is not good enough to be able to hand write too much, though I do occasionally use my own writing. Then there are photos that occasionally I want to print off to send to people without the bother of getting them professionally done. The convenience of the technology we use is the reason we rely on it so much, a bit like cars - we know we could walk but it is so much quicker/warmer/drier to use the car. On that score it is good, but we have come to rely on it too much and have forgotten to rely on ourselves to get things done. It is the time it saves us, but do we then use that spare time for anything useful? Probably not.
Anyway I must go and set up the new printer, if I can understand the destructions.
Take electricity. I don't think that I use that much, but have a power cut and I then appreciate how much of it I do use, and for how many things. No power? I'll listen to the radio - no that runs off electricity. Can't use the cooker so no hot food and can't even boil water.
I thought it wouldn't matter that I didn't have a printer, I don't use it very much but when I do it is for things that I can't do elsewhere. I make cards to sell for charity and I have my own logo that I use on the cards. This means printing on custom paper sizes for the different size of cards that I make. I also use it for wording as my handwriting is not good enough to be able to hand write too much, though I do occasionally use my own writing. Then there are photos that occasionally I want to print off to send to people without the bother of getting them professionally done. The convenience of the technology we use is the reason we rely on it so much, a bit like cars - we know we could walk but it is so much quicker/warmer/drier to use the car. On that score it is good, but we have come to rely on it too much and have forgotten to rely on ourselves to get things done. It is the time it saves us, but do we then use that spare time for anything useful? Probably not.
Anyway I must go and set up the new printer, if I can understand the destructions.
Saturday, 16 May 2009
Gardening
I have just spent about an hour and a half out in the garden trying to get one of the beds ready to plant some veg. It is a lovely evening and it is the first time for ages that I have done any work in the garden. You can tell this by the state of the rest of it. My brother came and cleared this bed of the triffids that had taken it over, so that is a start. I will have to hit the garden centres tomorrow to see what I can find.
It was rather hard work so I limited myself to how much I did as I don't want to overdo it. Working the soil was wonderful and the smell of it reminded me of why I liked gardening so much at one time. I have never really tried to grow vegetables before so this is another step on the Great Adventure. I grew some potatoes in a large pot last year and they were great and I have done some growbags with tomatoes and peppers before but nothing actually out in the beds. I will have to hope that the slugs don't get everything; I bought a couple of pepper plants last year and they were slaughtered before I could get them in the ground.
Think I'll go and watch Eurovision now - love the marking! It won't be the same without Terry Wogan so I may not last till the end. Bring on the nil points!
It was rather hard work so I limited myself to how much I did as I don't want to overdo it. Working the soil was wonderful and the smell of it reminded me of why I liked gardening so much at one time. I have never really tried to grow vegetables before so this is another step on the Great Adventure. I grew some potatoes in a large pot last year and they were great and I have done some growbags with tomatoes and peppers before but nothing actually out in the beds. I will have to hope that the slugs don't get everything; I bought a couple of pepper plants last year and they were slaughtered before I could get them in the ground.
Think I'll go and watch Eurovision now - love the marking! It won't be the same without Terry Wogan so I may not last till the end. Bring on the nil points!
Friday, 15 May 2009
Let the Adventure begin
Stage IV Cancer is a journey and an adventure and in a strange way has given meaning to my life and made me more positive. I know that sounds strange because it should be the other way round, but being told you statistically don't have a future allows you in the end to be liberated from the concerns of the future and to concentrate on the here and now. It takes some adjusting to and it hasn't been easy but right now I think I am happier and more contented than I have ever been.
The Great Adventure of the title is not about big things like going round the world or climbing a mountain, it is about the real things that matter, like doing the Race For Life on 21 June 09, sorting out my house and all the other things that I can still do and accepting and ignoring the things I can't do any longer. We all have a past as that has happened, but none of us has a future because it hasn't happened yet. Saying that I know what the future holds for me today and that is two fillings at the dentist so I had better go but I'll be back!
The Great Adventure of the title is not about big things like going round the world or climbing a mountain, it is about the real things that matter, like doing the Race For Life on 21 June 09, sorting out my house and all the other things that I can still do and accepting and ignoring the things I can't do any longer. We all have a past as that has happened, but none of us has a future because it hasn't happened yet. Saying that I know what the future holds for me today and that is two fillings at the dentist so I had better go but I'll be back!
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