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Friday, 4 September 2009

Time to give up

I really feel today as though it is time to just give up. Don't take the tablets, don't have any more treatments and hope it takes me as soon as possible though with my luck of course that wouldn't happen. I will just linger on and on and on.

Basically my entire life is a complete waste of space and no one will really miss me or even remember that I existed after a very short time. I am alone, I always was alone, and I always will be alone.

Tuesday, 7 July 2009

Bungie Jumping

My niece is out in New Zealand at the moment, part of her six month sabbatical from work in the Antipodes. Tomorrow she is going to do a 134 foot Bungie Jump - without a helmet! Rather her than me as I don't do heights, let alone jump off them.

It struck me when I was telling someone this that having Stage IV breast cancer is a bit like being on a Bungie cord, having fallen over the edge. Below is a nasty end until the cord springs you back up again and out of the mouths of the alligators waiting to snap you up. The trick is to keep bouncing and spending as little time as possible near the bottom.

Of course if you are really good at this you can give the alligator a good punch on the nose if you get close enough and send them scurrying away, hopefully on a permanent basis. The chances of that happening may be small, but we can all live in hope of winning the lottery and getting really lucky. I just need to make sure I sharpen up my technique so I can give them the best possible knock-out punch.

Flies like a butterfly, stings like a chemo treatment - to paraphrase Mohammed Ali!

Friday, 26 June 2009

Race For Life - 21 June 2009

I walked the course at Bournemouth in the morning and it was a lovely experience. My sister-in-law couldn't do it as my neice had been throwing up all night, but two friends from work (Sue and Nicki) did it with me and a friend I have known since I was 2 or 3 years old (Maria), which is a while ago now - no I won't say how long ago.

I did the Race last year as well, and at that time I didn't think I would be around to do the next one, but I am already planning my third. My team are known as the Patches Posse; Patches being a bear I made in a bear making shop in Southampton for my birthday in 2008. Nicki had gone round at work and got people to give some money for a birthday present for me as I was at home recovering from having my hip replacement. Sue thought a bear would be the perfect thing, knowing that I am a bear of very little brain type myself. She took me in to make the bear and I had to think up a name for her when I registered her birth, and as she has patches on her the name Patches seemed to be just right. She has her own trainers and outfits, and has a bit of a passion for shoes. She is very lucky there because all the shoes in the shop fit her perfectly, whereas with size 9 - 10 feet I have the opposite problem!

It is great that I can do these things and to have good company as well, what more can you ask for? The weather was perfect as well, not too hot or windy. It is good to have goals to work towards and despite my prognosis I don't see why I should give up on that.

I need to get around to planning what I am going to do this summer. The great thing about working in a college (administration) is that I am only contracted to work during term time. I will probably do some temp work for Sue, but as it is possibly going to be a good summer I want to get out and about a bit more - last summer was a bit of a wash out really.

There is a walk over on the Isle of Wight that I did with my mother on a couple of occasions, which I would like to do again. I also ought to do more walking out on the Forest. It is amazing how much I take the New Forest for granted having lived here all my life. When we used to go to visit a school friend of my mother's in Somerset we used to stop on the way, and on one occasion my parents had to stop my brother and I from climbing into a field. We really didn't have any concept that you couldn't go wherever you like in most places. We were used to just going out on to the Forest and not having to worry about it being private property. I very rarely go down to the sea either, and I live in a town right on the coast!

I must remember to get out some of the walking books that I have, as I would like to go to the Cotswolds this summer and do some walks there. My mother came from there and it is an area that I feel very drawn to, as though I belong there. The main problem with getting round to doing these things is that I am on my own and have noone to go with. It makes me rather reluctant to go out and do things as I am always the only one going so there is no excitement of planning it with anyone.

Sunday, 7 June 2009

I was just on Cancer Chat (Cancer Research UK) and a lady posted a message about how angry she was at the moment, and felt ugly, fat and tired all the time, while her ex-husband has a new lady and looks great. This was my response:

And why shouldn't you feel angry? You have every right, but I know what it is like to be stuck in angry mode when you are really a nice person, it happens to me periodically especially if I get frustrated about something. That said, if those around you can't accept your mood at present then that is more their problem than yours. But try not to let it last too long! Can your hospital or GP refer you to a counsellor, or do you know someone else in your position that you can talk to? Forums like this are very good for venting your anger on (within limits, of course!) as we are in the same position as you. With the best will in the world no one can really understand what it is like to have cancer until it happens to them. You don't say if you have early stage breast cancer, or mets.

I know it sounds like a contradiction but try taking some exercise - it really can make you feel better and gives you more energy. You don't have to do anything over the top, but with the summer coming and the long evenings try taking a walk. It takes effort to do it but if you don't try it you will never know if it will help. I have mets in my bones and had to have a total hip replacement as a result, and I am over weight and not a fitness freak by any means, but in my situation it is either curl up and die, or go out there and make the best of it. Walking helps to strengthen my bones, and at one time I even wondered if I could be able to walk without at least a stick ever again. I'm doing the Race For Life at Bournemouth in two weeks, for the second time. Maybe some exercise will help you to pound out your anger as well, but by walking rather than snapping at people. How about beating up a Teddy Bear? They are very forgiving, and are designed to give love and support in any way possible (but strictly no ripping bits off!).

Do you do paid work? If not, how about volunteering in a charity shop, or some other organisation just to get you into some sort of a more positive groove. I volunteer at the local Museum, something I have been meaning to do for years, and then recently I actually thought of it when I was walking by, so I went in and just did it. I 'work' in the shop and am also helping to prepare an exhibition. I have had problems with depression for many years and have low self-esteem etc, but now - to hell with it. If others think I'm not good enough, that IS their problem. My motto at the moment is Life for the moment, not for the future. I have given up worrying about the future, especially as they don't give me any hope for having much of a future, and in many ways that has been very liberating.

It sounds rather as though you need some quality ME time. Does your local hospital do a "Look Good, Feel Better" session that you could book to go on? It is an afternoon with professional make-up advisors, organised by a charity to do what it says on the tin, and you are given a bag full of beauty products with top brand names, and it is free. I'm not really into make-up and gave most of the products to others but it was nice to spend some time with other women who are also going through cancer treatment. Try http://www.lookgoodfeelbetter.co.uk/site/index.cfm to find out more. They do a confidence kit which you can order for £2.50 to cover postage.

Also try Breast Cancer Haven, http://www.breastcancerhaven.org.uk/ . I have not actually been to one but I have just ordered their Haven at Home pack, which is free. They have centres in London, Hereford and Leeds. I am interested in trying a day at the London Haven. Their approach is very similar to that of the Penny Brohn Cancer Centre in Bristol where I have been for a Taste of Bristol day. Penny Brohn http://www.pennybrohncancercare.org also does a free Started pack which includes a CD with relaxation techniques. I knew about the Bristol approach before I had cancer because of a friend who had stomach cancer 5 years ago. Their Taste of Bristol day in now free, and with a three course lunch included in the non-price! If you live nearby these places are worth a try, or at least check out the web sites and see if they have things that can help you.

Relaxation, imagery and meditation really can help you deal with your situation, and the ME time I mentioned could be as simple as using the Penny Brohn CD relaxation technique every day so you can focus on you, and helping yourself to heal. It is important not to forget yourself and your needs, and not put everyone else before you. Your sons sound as though they are old enough to be a bit more independent and not rely on mum to cook clean and scrub for them - they need to learn how to do that for themselves, and if they do take on more responsibility they will be helping you, and freeing up your time for that ME time that is so important.
I hope some of this is of help to you, by the way, great name ((((hugs)))) Vicki!

Thursday, 28 May 2009

Good days and bad days

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.

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.

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.

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.

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!

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!