Sunday, July 29, 2007

A second opinion...

I've been busy with my new nutrition regime. I've cooked quinoa and fresh mackerel, investigated shiitake mushrooms, created the most amazingly inventive nutritious organic dairy-free meat-free meals, chopped and sprouted and crushed and creatively substituted good stuff for bad stuff and been kind and patient with myself when I have not quite made the grade (haven't quite managed the juicing yet)...

Still not quite there with the meditation and relaxation yet - family stresses are not helping - tho I actually got to sleep before midnight last night which may be a first for several years...?!?!

It was also suggested to me that I ask for a second opinion. Not easy - don't want to upset any apple carts. I have a letter prepared but it's taken me a while and I'm not quite sure why I might be seeking a second opinion. I guess there aren't many choices out there - you just hope your surgeon has a good eye and a steady hand, and that the oncologist knows a bit about chemistry! ;-)

But in the process of scouring the web for organic delights, I came across this US website and their comments about getting a second opinion. They are of course selling their wares - but now I know why I'm seeking a 'second opinion'. And I'm feeling good and mad...

[Our] breast cancer experts practice integrative medicine — a unique care philosophy that combines technologically advanced conventional treatments with supportive and nurturing complementary breast cancer therapies—all under one roof. We work with you to build an individualized treatment plan around your needs instead of applying a standard treatment formula for everyone. You may not be getting the comprehensive, nutritional therapies you need, guidance and support for you and for your family, or you may be suffering from side effects of your treatment.

They talk about the importance of the team and being in the driving seat. Hey, I was just grateful my 'team' didn't throw me immediately into chemotherapy with the hope that I might not have to face it afterwards either. I pray for that. But I don't even know if the meds are working or not any more as the surgeon decided (as I was being difficult by not leaping at the opportunity of surgery after three and a half months of meds instead of waiting for the full six as the oncologist had anticipated) that he wouldn't keep an eye on how things were doing (is it reducing, staying the same or getting bigger?) until the six month mark - shithead).

But, oh my goodness - that website has lanced a boil of rage.

Integrative medecine : My very first thought after the diagnosis was to find out what Bristol could teach me. Where else would one find such an 'alternative' approach. They have a lot to say about diet and a healthy lifestyle, about a holistic approach. When I've asked at the hospital about diet, they've had absolutely nothing to say. Shitheads. When I talk about stress being a factor, I'm laughed at. Shitheads2.

And now I learn that the Bristol approach is everywhere in something officially called 'integrative medecine'. Of course, putting it all into context, what I knew about Bristol comes from the early 80s - it WAS pretty avant garde back then, pretty controversial, but things have moved on in the last 30 years or so. Der! It's almost mainstream now...and I *could* have expected a different approach from my 'team'. I haven't even had the minimum of continuity with a named nurse. Hell, I haven't even had continuity of anything. Just a bucketful of 'misleading information' (putting it kindly). Lying toerags. Hell, sometimes nobody turns up to see me.

And they care so little about side effects of the drugs that nobody ever bothered to ask me if I had any...And the people on this website actually offer naturopathic remedies. It's all right up my alternative street. The fact that I cried solid for days as a side effect is an irrelevance to them as well as screaming at my husband when the marriage was already in difficulties and it's the last thing an Aspie can cope with - and anyway, I'm used to misery and being ignored (know your place, dear, out of the way and be quiet). Having been brought up in an Aspie household, I'm a great candidate for the traditional approach. Shitheads. Oh, sorry, am I repeating myself. I would have thought that, with the Aspergers 'n' all that, we were a family crying out for some additional emotional and medicinal support. Ignorant toerags.

But I'm not quite sure what a second opinion could offer me. Just knowing that, if I lived somewhere else, I could have (had) a better experience doesn't quite do it for me somehow. Hmmm! How I hate living at the back of beyond with the sea on one side and meandering lanes on the other, a main road coming from the south, going north, leading nowhere except more sea either way and a two hour journey out of the county. Not even a plane to anywhere except...Aberdeen! (I wonder...) ;-)

Sunday, July 15, 2007

I'm back!

Me and my cancer went to Bristol to visit the Penny Brohn Centre. I am a changed woman! Brainwashed, after a week's stay, into a vegan, organic, meditative, relaxed lifestyle. I've slowed down so much, I'm floating...on the sea of tears I shed while I was there.

There's work to do if you have cancer - undoing the stresses and stressors that led to the cancer in the first place. Spirit, body, mind, emotion.

It was easy to do 'the work' in that place. I welcomed it all. Bodywork, groupwork, spiritual healing. Art therapy, music therapy, wholefoods and 'You are what you eat'. Talks and videos and entertainment. Meet the GP, meet the nutritionist. They actually take you seriously. You don't often find that in the NHS. But towards the end of the week, I looked at one woman and suddenly knew she would die. You have to be prepared to lose your dignity to survive - admit that you need help, ask for it, live through the emotional pain. Humble pie. Humility. Serenity.

But, oh dear, the minute my husband came to pick me up, it was all downhill. His terror [of me] is escalating all the time. On the other hand, I was so chilled out, it was easy to see how we had ended up in such a bad place. It's difficult for anyone to live with the uncertainty and frustration of autism - whether you've 'got it' or are just partnered by it. Placid or not, I found it difficult to withstand his efforts to make sure I was just as stressed as he was by the end of the two hours it took us to drive home.

OK, he doesn't TRY to make me stressed, but it's hard to believe he's not working at it when you consider what he says and does - and to see the patterns repeated over and over. And if I point it out, he's stressed almost beyond coping...I refuse to feel badly for simply stating my case.

I sat quietly on the patio when we got home, and pointed out the pretty, frilly poppy which was growing all alone in the middle of the patio, frail but strong. As he walked away he kicked out at it.


I know he didn't intend to do it, but the fact is that he did it. And how symbolic. Me, returning frail but strong; him kicking out at it. I know that 'kicking out'; it's part of his way of getting around in the world - I think it's an autistic trait and enables him to know where the boundaries lie - like a blind man feeling his way in the world. I can feel compassion but I have to put my own psychological boundaries in place to protect myself - and that means simply ignoring him rather than hating him or feeling hurt.

How sad.

I have returned with some new 'rules of this house'. Hubby and son have to be out of the house together between 2pm and 5pm so I can get some rest at my 'dip' time. It can be leisure (eg bowling or cinema), physical activity (eg swimming or cycling) or (home) educational. So far it is working well as they are motivated to think of things to do instead of hanging around watching TV. It gets their engines revving and I think hubby has been having....(shock, horror!) FUN! (I'm jealous!!) And I'm not wholly and totally responsible ALL the time for everything that happens, especially son's home ed.

And (shock, horror 2!) I am sleeping alone. Space, quiet, light on and off when I want, music when I want, reading in the middle of the night in comfort if I wake up. And gradually I hope to get back into some sane sleeping habits, going to bed at a civilised time. Have I been going to bed later and later just to avoid him? It's possible. The thought often occurs to me.

I am hoping that, by not sleeping next to a man who is the essence of fear, I can maintain some kind of calm throughout the night and not wake up with my teeth clenched.

But I am jarred by them both almost constantly - physically, mentally and emotionally.

I hate my life - I'm sick of crying and struggling and feeling exhausted - but I did learn in Bristol that the part of me that hates my life really is only a part of me - the greater 'I' is in charge of what I decide to do about it. And I can overcome the cancer if I can overcome this impasse of needing to leave (= survival) but still wanting to find ways through to a better life together (= security).

Fuck the cancer. It's been a wake up call which has pointed the way yet also made the transition that much harder because of the physical incapacity which lies in its wake. F..., f..., f....

At least I'm communicating with the rest of the world again. Hi!!!