Monday, 29 June 2009
"I am where I am and the scan doesn't change anything - it's just information. "
"The result doesn't matter because it's only a snapshot of that one moment, and a look backwards at what has happened, and not what is happening."
But whatever I try to tell myself, I can't shake of the dread, the sickening worry. "Has it grown ? Has it woken up ? Is there any kind of help if that does happen ; does the information actually make any difference at all at the end of the day, or am I just satisfying my oncologist's curiosity ? " Am I just giving myself a four minute warning ? Do I want a four minute warning or do I want to live in ignorance for as long as possible ?
Of course I want warning now. I don't quite know why. Well, perhaps I do. I'd step up my efforts and just sit chanting and meditating in my chair, drinking vegetable juice and breathing so deeply I'll be in a trance like state of numbness. Or I'd go the other way and eat, drink and make merry. Can you make merry knowing the clock is ticking ?
Sadly, I don't think the scans are all that helpful, but they're available ... and they say information is power. It's just that from past experience I've come to realise that the information just gives me reassurance that I can bank the past. That's safe. I've got that and it can't be taken away from me. Unfortunately the future is still uncertain. I'm starting from a place that's not worse, but I'm also not starting from a place that's better. And my starting point isn't good. So I sit here worrying myself sick for a result that at best means there's no change to a bad situation and at worst that the clock's started ticking again. A bomb still detonated and waiting to go off.
I hate the waiting. It's pointless sitting here posting about it when I could go join my friends at gardening and try to distract myself. But my hearts not in it. I'm on red alert. I'm immobile, frozen in the headlights of the result wondering will it run me over or pass by with a woosh of wind leaving me shaking in its wake. i wouldn't mind if the result might leave me euphoric. I know that's not going to happen. I have lost my fragile hope of remission. There's been no change and all the medical staff think I'm deluding myself ( all bar my McMillan nurse who does a great job of persuading me that he thinks what I'm doing is making a difference. Of course it is. Emotionally. But what I want is physical improvement. I want a cure, not a healing.
Saturday, 13 June 2009
I would recommend the Icon Magazine as well.
In the April / May issue of Cancer Watch which I have just received there is an article about the benefits of fibre and beneficial bacteria . Together in the colon they
" activate a receptor in the body that can kill cancer. The beneficial bacteria produce butyrate from the fibre and this activates a receptor (GPR109A ) ... [this] blocks the Cox 2 protein that causes inflammation and secondly it sends signals out to cancer cells telling them to self destruct."
The information comes from scientists at The American Medical College of Georgia ( M.C.G. ) Do go read the article. It explains the advantage of eating enough fibre and ensuring the health of your friendly bacteria. It's given me an added incentive to take my supplements of enzymes and friendly bacteria, and is a thumbs up for all the fibre I eat ! It just goes to show that good nutrition works to destroy the cancer on so many levels . Now I can add that thought to my visualising - as I eat !!
There are also many other useful articles on current research here.
Thursday, 11 June 2009
I signed up because I thought I had nothing to lose. I've been told it's worth trying and my friend Jenny who uses a homeopath herself, encouraged me. It's difficult to know what to expect or hope for when you don't really understand what it is that homeopathy's supposed to treat. As everyone with cancer treatments under their belt knows ,there are plenty of symptoms and sensations and issues to go at. I had very recently developed a very severe and uncomfortable symptom. It's hard to describe. I would wake up every morning with a sense of dread, fear, panic, desperation. This was a development from the general waking where my first thought is "I have CANCER " . This had developed into a physical sensation. It was like a creeping shadow, a cloud, a blanket which moved in on my body (from stage right ? I don't know, but my memory of it is of coming from the right - but memory IS a fugitive, changeable, capricious thing !) It was a feeling of dread and fear and panic, but it had a physical presence in my body. Not a hot flush - I have enough of those and this was different. In looking back I think it may have been a panic attack or something akin to it, but I don't know. Some sensations are just really difficult to describe in words. Anyway, as this just started occurring perhaps a fortnight before my appointment and it was the biggest of my problems ( Yes, I'm in a really fortunate position right now and I do count my blessings !) this was the problem I identified as being the challenge for the homeopath. We had our consultation and I was quite clear that this was what I wanted treating. I was given a teeny tiny little pill to place under my tongue to dissolve and told that I would receive my prescription through the post. It eventually arrived and I can't tell you of my shock and annoyance at receiving just three teeny tiny little pills. Sugar Pills !!! I had paid £8.00 for 4 tiny sugar pills ! But... if they worked that would be OK. Size isn't everything, BUT I was more than a little dubious about getting only 3 pills to sort this really awful problem out. I was prepared to be wrong, but I can tell you I was still very dubious and a little outraged that maybe I was being taken for a fool. I took the first pill - Sugar !! - I don't let sugar pass my lips (apart from my calcium and vitamin D supplement that I get from the doctor and that I take because I have osteopenia and am pretty frightened of any weakening of my bones - either I'll one day collapse on the floor as all my bones disintegrate !! or the dreaded words bone mets creeps into my mind ! ) and then I googled the homeopath. She seemed credible and if her site and other homeopathic sites were to be believed the cost of consultation was really expensive. Did they always prescribe just 3 little pills ? I googled the remedy - bellis perrennis or daisy and found that it seemed to be appropriate. I also found out how much those little pills cost to buy in bulk. I was a little irritated that I might be being taken for a ride.. I sometimes feel that all us cancer patients are just sitting ducks for charlatans and anybody wanting to make a quick buck out of someone elses misery. I continued to take the pills, and funnily enough from the first night the feeling disappeared. I still awoke anxious - I have cancer for goodness sake - but that physical discomfort has gone. That was just 4 weeks ago. I can honestly say that those 3 little pills did do the trick ! So my goodness it was worth the money because it did what it said on the tin ! I must admit I didn't think anything would really shift it. I thought I'd have to live with it like hot flushes. I saw Caroline again on Tuesday and she thinks that it's gone now. That it won't wear off. What I now want to know is " if homeopathy's so good why doesn't everyone use it ? " But then that question is often raised about many things. I will say that I went into this with an open mind. I may have had concerns about the expense - you can pay in the region of £85 for a first consultation and £45 for a follow up - but I was willing to give it a try. I was very fortunate to have The Breast Cancer Haven open in Leeds to give me this opportunity. The Haven is a charity and gave me the homeopathic consultation for free. All I had to do was make a contribution of £8.00 towards the cost of the remedy. That is only reasonable. I think that without The Haven I would never have tried homeopathy. I don't like to buy gobbledy - gook and promises. I have done this since trying to find a cure for my cancer and I continue to do so (what idiot pays £60 a month for two bottles of brown liquid in a brown bottle that is an herb tea , with the name of Essiac ? Moi !! ) But all I can say is that it did work, and for that I'm grateful. So I'm now feeling converted to homeopathy.
Do you want to know what I want fixing now ?? Anger issues !!! Evidently homeopathy can do this as it treats the whole person. I have a quasi scientific understanding of this that I've gained from all the reading that I have done. All our emotions are simply chemicals and enzymes racing around our bodies. And the talk about storing emotions and memories in the body ? It's quite understandable to me that they could be stored chemicals and toxins locked away for safekeeping in my flesh. So the mind and body being physically linked idea works for me. And the idea that uncomfortable, unhelpful thoughts can be stored for decades also has a kind of believability to it. I have been given some teeny tiny little white sugar pills and I will let you know how I go on.
What are my anger issues ? I won't remember in a few months time (hopefully ) so I'd better jot down the ones I can think of.
- How I was treated by Harrogate Hospital when I was first diagnosed ( abysmally - a HORROR story !!! but don't we all have those stories , more's the pity ! ) You'd think I'd be over this by now, but it seems not ! I don't dwell on it. I thought I'd put it behind me. I only mention it because I was asked about my experience recently and it all flooded back, complete with Emotion !! It surprised me, but there it is.
- Other road users. You know - slow coaches, idiots that weave in and out of traffic looking for an accident, people who don't thank me when I let them out, people who don't indicate when they're going to turn, people who stop in the middle of the road to have a conversation with an acquaintance. What can I tell you ? I'm a grumpy old woman - but maybe not for much longer !!
- Supermarkets !!!!!! Why oh why have they cut back on organic and health foods ? They've lured me in away from the health food shops and now they're leaving me high and dry !! Where's their loyalty ? They're forever asking if I have a loyalty card . Yes you TESCO -named and shamed !! They're all bad. Asda used to do sprouting seeds - though I now do my own. Morrisons used to do organic peppers - my daughter lives on them - and now they don't stock them in ANY of their stores !! Why ? I bought enough of them ,and regularly !! Waitrose is the best at the present time, but I'm not holding my breath. I HATE shopping. It's frustrating and maddening and soul destroying and I'm sure it damages my immune system every time I go in. I want to boycott them, but where else can you shop now that they've squeezed the life out of all the small shops. All I see now when I go into these market places is all the food I can't have - Aisles and aisles I don't walk down. And why is the good stuff mixed in with all the rubbish and continually being moved around. And don't ask about internet shopping. They SUBSTITUTE !!!I don't want substitutes !
- Cafes and restaurants also irritate me. What is this obsession with dairy products ? It's so difficult to be dairy free, yet I'm absolutely sure I'm not alone. There was a time when it was unheard of to be gluten free, but people did know about dairy intolerance's. Now it seems that many cater for gluten intolerance's, yet still can't cope with a dairy free request. And why do vegetarians ALWAYS get dairy in the mix? How do vegans cope ? I started telling them that I was vegan and everyone understood the concept far better than me, so it's not ignorance that's the problem. It's an unwillingness to cater to anyone dairy free or vegan, because if you're vegan you can forget it. Even if you ask for just vegetables or salad and explain your reasons all that is brought back is a teeny tiny little side of vegetables. Why can't they make the portions larger ? Isn't that basic common sense ? Does that take extra brain power ? A monkey would understand the situation. But not the restaurants and cafes I sometimes stumble in to. There are some who are accommodating and I am very grateful and loyal to those establishments. It's just really frustrating when you're out and about and can't get anything to eat without it costing an arm and a leg. Two side orders of vegetables doesn't add up to a main course but when the bill comes it costs more. It does just make me furious !!
I can't think of any more tirades at the moment, so I'll close here, but you can see my problem. I have anger issues. When I was on chemotherapy and after it finished I wasn't angry. I was just really glad to be alive. I'm still really glad to be alive, but life's irritations and frustrations are just getting too uncomfortable for me. It wreaks havoc with the immune system and it spoils the precious moments. I don't want to wast my time on this stupid pointless emotion. I achieve nothing with it. It just weighs me down. So if homeopathy could be a magic pill and help me with this I'm here waiting and willing for it to work. And if it doesn't .... there's always something else - EFT ! or hypnosis, or whatever ... Hope springs eternal ! And yes, I do meditate and practise deep breathing, but that takes a little while to kick in, and it's not always convenient, and I don't always think of doing it when I'm in the middle of my life and the emotion catches me unawares. !! I want a quick fix, just like everybody else. So, I'll let you know if homeopathy mellows me down in those frustrating circumstances.
Wednesday, 10 June 2009
This blog contains many resources and has just started a book club which promises to be stimulating.. Dennis is an oncology nurse who himself has experience of cancer. He is a knowledgeable and articulate man whose writing is life affirming .
It strikes me that I haven't ever gotten around to writing up my own blog favorites. There are many, many times I come to the internet with the intention of blogging only to spend all my time reading other people's blogs. Sometimes I comment, and sometimes I write mini novella's on someone else's comment section instead of getting on with my own. ( I hope if you're one of my target bloggers that you don't mind ! Everyone else seems to make short succinct comments, but I can't seem to distill my thoughts into just a few words. I'm working on it is all I can say. ) There are far too many blogs I like to put them all in one post, so I'll break them down into categories and do a few posts. I'll also add comments about some and not others. There's no reason for this. It doesn't indicate favourites. It's just that I would just keep repeating myself if I made the same comments on them all and that would be very boring to read. So for my first selection I am concentrating on blogs that have some link for me to cancer. The blog I refer to above has a blogroll which is far more comprehensive than mine. Mine is idiosyncratic and suited to my own tastes, and is the product of serendipitous happenstance ! Hours of happy surfing has brought them to my attention. There will be many other excellent blogs that I simply have not come upon - yet ..... I will post about other blogs which amuse, entertain, and delight the eye in a later post when time permits. You can see why I spend more time reading than blogging myself! They all have wonderful voices full of insight, wisdom and information. So - In No Particular Order - here goes :-
http://www.iayork.com/MysteryRays This is a really interesting blog !! Sometimes the information's not so relevant to me and goes over my head. It's about immunology and virology and other stuff. As I'm looking to boost my immune system I think it makes interesting reading and I love the spirit in which it's written. I think his title is fantastic and the reason behind it is, in his own words :- "For years mystery rays from outer space has been my explanation for anything that seems inexplicable- which covers much of immunology and virology. I think I originally saw that as Dave Berry's explanation for Etch - a - Sketch . " I think this could be my new explanation for life, the universe, and everything !! Go have a peek. I feel I could use the illustrations for visualisations.
http://daria-livingwithcancer.blogspot.com/ Daria's blog, called 'Living With Cancer' is all about day to day living with cancer. Daria is a warrior with a very cheerful take on the trials and tribulations of this cancer experience. I love her blog and she is incredibly supportive to me as a fellow blogger. Her positive spirit is infectious and her blog is uplifting and inspiring
http://www.becomingwhole.typepad.com/my-webblog Meg Wolff is a macrobiotic nutritionist who has successfully battled cancer. Her blog is informative and full of recipe's and instruction on the macrobiotic lifestyle. This is a generous blog and well worth a visit.
http://cancerisnotfunny.blogspot.com/ Cancer is Hilarious is written by a young fashion designer with a great eye and a great attitude. I love her eye and I like her blog. There is great imagery and her spirit shines through. It's very inspiring. Her blog may be intended for the younger end, but it's universal
http://aftercancernowwhat.blogspot.com/ This blog is full of current news items and up to date information on cancer. I don't know how she manages to stay so current. It's slightly political, but that's OK with me. It also has references to celebrities who have had or are fighting cancer, making it a much more visible problem. I find this blog informative and motivational. It's a great read.
http://cyndisadayinalifewithlife.blogspot.com/ The author of this blog is going through breast reconstruction which is a path that I sadly can't follow. This is written by a kind and intelligent woman who generously recounts her experiences with cancer.
http://jillscancerjourney.blogspot.com/ The blog is titled 'Dancing With Cancer Living With Mets.' and I think that tells you a lot about the spirit of this blog.
http://lesasbreastcancer.blogspot.com/ This blog is titled 'Fighting For a Cure ' This is a very upbeat cancer blog. Lesa is very generous and artistic and makes cards of encouragement for fellow sufferers of cancer. Her blog is a pleasure to visit.
http://korean-cuisine.blogspot.com/ A food blog as well as a cancer blog. The photo's of the food make me drool ! The writer is very generous with her recipes , and although I haven't made any I can dream ! This is a young author whose blog is again a delight to visit and inspiration for the likes of me who doesn't really enjoy cooking but wishes she did.
http://www.assertivepatient.com/ A good blog. Go read it.
http://appendix-cancer.blogspot.com/ Very informative and well written.
http://www.thecancerblog.org/blogs/the-cancer-blog.html A technical blog but could be interesting.
http://kattlovecancerblog.blogspot.com/ This is a blog written by a retired oncologist. Definitely worth having a look at.
http://medicineworld.org/cancer/cancerblog.html A technical blog but could be interesting.
http://blog.dlsrf.org/ This is the Dr. Susan Love Blog and is particularly interested in breast cancer. Informative.
http://doctordavidsblog.blogspot.com/ The musings of a pediatric oncologist. Even if you don't have any interest or need for information on pediatrics this is a must visit blog. It is very earthing. It puts my own experience into perspective and makes me very very grateful for what I have. It's a positive blog. Check out the April 18th 2009 post. It's a guaranteed cheer up call to all adults over the age of 50. ( Perhaps younger, but I don't like to speak for others who are younger than myself, and whose life will be complicated in a different way to myself. )
http://cewilton.blogspot.com/ A Pastor's Cancer Diary. With that title you know it's going to be wise and upbeat.
http://crazysexylife.com/ Kris Carr's website full of information and other bloggers as well as her own great personal blog. If you haven't visited this site before you really must !