Showing posts with label treatment. Show all posts
Showing posts with label treatment. Show all posts

Saturday, 21 January 2012

Catfish

Oh my word...Catfish is on More4 at 10 pm. Record it just for the pleasure of being able to tell me to stop going on about it, ha ha! I give thanks for getting more talking and writing done about the freeholder thing yesterday and then getting some tea and just chilling with the wonderfully droll Coach Trip Brendan and 'celebrities', the sofa gripping gasp out loud roads on IRT Andes and then more laugh out loud fun on Come Dine with Me. Then I had one of my mini baths with Lushly goodness in and Alan Bennett read to me in bed...well he didn't really but I read some of his Untold Stories which I found in a charity shop on Thursday. I love the way he writes and because I know what his voice sounds like I kind of hear it like that in my head. I love being read to...and I actually like reading out loud. I used to read for a talking newspaper...much thanks for all these pleasures and memories too...

I promised myself I'm going to try to enjoy this weekend as much as possible, not get too stressed about serious stuff at all. Best of all I'd like some company and companionship...someone to give me a real hug maybe, someone really there just to hang out with, cook some food with, chat with... I'm so strong but I'm human you know? There's so much going on and it would be nice to have some time out!

I'm going to try not to fret or trouble myself with best or worse case scenarios regarding health issues or neighbours or the freeholder although someone did suggest he might send his heavies in to intimidate me which left me feeling very uncomfortable. I try not to dwell on the incredible vulnerability of many aspects of my living situation...and I would rather not be reminded. All the things that are most precious to you would probably be precious to me if I had them...and although I guess safety and support has always an element of illusion I would like a more of an illusion sometimes.

Thank you to everyone who wrote kindly and encouragingly yesterday. As Carole points out, the surgery they are talking about is major and the first time I heard of it (September 08) I cried because I didn't want it done...so it's kind of funny that it's become almost desirable to me now, don't you think? The reason it wasn't done was that after they found cancer elsewhere in my body they didn't think I had very long to live anyway. 'It' wasn't worth it, I wasn't worth it...take it how you will. So to still be here and still well enough to have them review and reconsider without even one full course of chemo is well...pretty astonishing and amazing in and of itself whatever else transpires...even if the next bunch of tests and scans show deterioration.

So think on chaps and chapesses...they may not have sussed out who, what or how yet but there are situations in which cancer does not behave as badly as it might. Let's hope they find out more about them, eh?

Even if they are able to operate, it's not a miracle cure of all my ills remember...I will still have cancer. I will still have only one kidney, and that still will be damaged. I will still have a bag. I will still have the stroke damage on my left hand side and numbness on my right that no one has been able to find the cause of. I'll still be billy no mates me lying in bed on a Saturday morning pretending to talk to people who are not there and wishing she had a 'real' life. I'm going to look into personality transplants...I wonder if I could get one on the National Health?

Friday, 20 January 2012

Fighting chance

When I wrote last night about not giving up the fight I wasn't referring to the cancer fight and it was only reading it again that I realised that you might think it was. I was talking about the fight(s) with the freeholder of the building where my flat regarding his obligations as such. Adequately lit communal areas and no running water that isn't from a tap would seem to anyone but him to be reasonable requests but he makes me (and anyone else who I get to back me up such as CAB, MP and Environmental Health) right to the wire every time. Legal proceedings are lengthy and expensive and he knows my resources of health and wealth are limited and I think he assumes I will give up one way or another sooner or later but over the last couple of days I have come to the decision that even though I prefer avoiding conflict and stress (and typing and phone calls!) and would prefer to devote my time to crafts and contemplation and blogging and watching TV...the fact that I am poor and in poor health actually makes justice even more important not less. The vulnerable rarely have a strong enough voice to have access to the same care and attention as those who are more able. It's not really about me (for I am able to 'rise above it'), or the people who come after who may or not have the wherewithal to kick ass) but about doing the right thing again and the right thing is to not give up the fight because it is about right. And not to fight with bitterness or anger because that is wrong. I have skills that can still be used I reckoned and if I die in the process well it's for a worthy cause...

Well anyway, the phone rang this morning and at first I thought the woman on the other end said she was 'Rhian' the solicitor I was speaking to yesterday and then I realised it was 'Karen' the urology nurse who I'd asked to send me another Luer lock connector (you don't need to know!). She was ringing to say she was sending me one and to say the MDT was reviewing my case. My case had been in the On the Way Out Tray for some while as you know til blessed Dr Galli got hold of it. When I was told last summer my primary bladder tumour had shrunk Rachel, my acupuncturist, (bless her too!) had said 'Ooh, maybe you can have it out then'. I'd not thought of it like that and I'd kind of scratched my chin and wondered. I mentioned it to Dr Galli and he was rather taken aback but agreed that as the reason they weren't going to was because they thought my cancer was spreading ferociously whereas it now seems to be static or in retreat it was a reasonable question. So he put it to the urology team and they said...well you know you might be right, come and have some more scans and checks and we'll have a chat. No chemo? I asked. No, we promise...no chemo she said. (For new readers this is not cos I'm chicken but because it actually tried to kill me!) Now I don't want to get over excited about this as we will have to see what transpires but if they could remove my bladder I would have a urostomy not a neprostomy. Now a urostomy is a chap like a colostomy...it is designed for you to carry on with a pretty normal life afterwards. You can, I'm crying at the thought, do wet things like proper baths and swimming! You don't have to have a wire rattling around in a sensitive organ and a tube that has become a holiday home for viruses. Can you imagine the luxury of that? What's that... you live with it every day? Have you any idea how fortunate you are? No I didn't either, ha ha! Seriously though, it may be the investigations prove it would not be possible or advisable but even so...are you getting this (especially you well people!)....after three years of 'nothing more can be done' people are talking about the fact that maybe it can...FFS wouldn't you be crying!!!

Monday, 16 January 2012

Time and emotion

I've just been looking at Sally's blog...http://sh-healingcircle.blogspot.com/ Pop over and spot the family resemblance in themes and illustrations! I was interested to read how she likes a visually calm and ordered environment to be and be creative in...

This is an especial challenge for me now with energy resources and physical capabilities limited. There are things I want so much to make and write and do and I think I'll make a start when I've tidied up and sorted out and so on and the next thing you know it's early evening and the only thing my hands are holding is the remote control! There are valuable truths to be found in such challenges and one of course is to prioritise. People often say 'Oh, leave the housework or whatever,' and once in a while I will if it is to go outdoors as this is such a treat but if I don't feel up to going out then I much prefer to be a space where things are in the right place and clean. Having muddle and mess and outstanding jobs around saps my strength further anyway...it's like having lots of programs running in the background on your pc.

Always I will prioritise my blog because it's where I try to think straight and write creatively anyway. I don't believe inspiration lives inside your head anyway so if I don't achieve creative goals they are still there for someone else to take up. I will carry on my commitment to keeping my home as delight-full as I can and try to instil more mindfulness in the chores, more appreciation and awareness of my body, the tools I use, the purpose, the process and the result.

I give thanks today, as ever, for 'my' beautiful views. I once had my fortune read in the grounds of a temple in Thailand and I was told I would own land as far as the eye can see. Well, you could dispute this legally but no one really 'owns' anything do they. I am in possession of beautiful views and for that I am truly grateful.

I give thanks for a run in with one of my less favourite GPs this morning strange though this may sound. I don't feel good about pressing her buttons and it's a shame that she has them too but it reminded me to take more responsibility for my emotions. And I'm grateful for a lovely letter from the puzzled professor of neurology reminding me that the NHS does employ some really dedicated people and that he really does care about his job and me.

On a lighter note I read in the local news that someone has been arrested for growing 40 cannabis plants across the river 'in a joint operation' between the council and the police. I like to think that the person who wrote that chuckled...

Thursday, 24 November 2011

Thanksgiving

Well, I've ranted a bit on CC and I've ranted a bit on here and seem to have upset some folks and I'm sorry for that, but not for what I've said. The happiness squared project must go on as must my 'against the rules' survival!

So this afternoon and evening so far I've been delightfully grateful for...

* finally getting the hang of the very US orientated website and managing to order a parcel of treats for my pen pal on death row

* a thick fairy crescent (not a whole ring) of toadstools on a grassy bank by the side of the road

* a great chat and swap of small kindnesses with Rachel who also made me a cup of tea...oh and gave me some acupuncture too, ha ha!

* a thoughtful letter from my neurologist saying even though he hadn't found anything obviously wrong he understood this wasn't very reassuring and to let him know if I wanted to talk about it more

* cold pizza on the sea front beforehand and a walk along it in the darkness after. Lots of spray and hardly any people - great!

* trying out the yarn I bought yesterday and confirming it will make a nice little scarf for one of the local charity fundraisers and an easy don't-need-to-look-at-my-hands craft project whule watching TV. Now where's that remote control?

Tuesday, 1 November 2011

Rabbit rabbit

Phew! Another few inches (each) of picture rail and skirting board revealed and of curtain sewed, and several feet of curtain tacked... I'm not expressing gratitude for the speed that things are progressing you understand, simply that they are!

I'm grateful for a good talk with the good doctor and remembering the nice nurse this morning saying he thinks the man must have a portrait of himself in the attic because he's known him for twenty seven years and he's always looked the same. Apparently he's retired twice already and is estimated to be in his mid to late seventies! How lucky I was he was a locum duty doctor the day I went in. He is the first person to recognise that while the cancer is failing to kill me as quickly as it might, other conditions are carrying on disregarded...and the longer I live the less acceptable that actually is. I am still 'worth it' in other words! I guess he knows a little about premature relegation himself... and that the real scrap heap challenge is to stay off it!

I give thanks for some salad with my tea. I've had cooked veg the last couple of nights but sometimes I really crave raw ones. Even in my early teens one of my favourite things to eat was salad and in the places and days I spent my early teens that was considered very strange indeed! I wasn't even on a diet, ha ha! I also going back to give the kitchen a bit of a clean and tidy afterwards before flollupping on the sofa so it doesn't give me a nasty shock when I go and make a hot drink later.

Thursday, 29 September 2011

Oceans

Well, I went to the beach. Exhausting but wonderful! Walking down there felt slightly surreal...me in my best summer clothes and the warmth and hazy light and lack of people milling around. I wondered if I'd actually died and was just dreaming it if that makes any sense...
...well, it's what I wondered whether it makes sense or not!
Decided to give the woody uphill path a miss as extra walking involved anyway to get to the sand and extra things to carry. A picture doesn't do the fragrance of it justice... a delicious piney, cedary, resiny smell.

Honestly, look what you people are missing out on not visiting me! You wouldn't even have to sit close by my side...there's loads of space and sand to share, ha ha! I give oceans full of gratitude that I'm ending my days in such a pretty, laid back place. I give thanks for watching dogs playing together and people walking out way beyond the pier into the sea on the narrow sand bank the ebbing tide reveals. I've done that and it's fun and from a distance it looks like you're walking on the water!

When I got home there was a message to book a neurology appointment next week with the Professor I saw a few years ago so that's progress, I also heard from someone I'd contacted about lack of an oncologist's support and he's given me the number of the one who has taken over the caseload of mine who it turns out is off sick. He said he would mention my name and circumstances to her...progress also! Gratitude for these items of news and for some friendly pleasant phone conversations with people I've met in more vigorous days to make necessary arrangements. Thank you Harry, Robert and Tina for making difficult times a little easier...

I give thanks I've caught up with essential things like washing and washing up abandoned earlier on and had some Covent Garden soup to have for my tea. Taking it very easy this evening...mindless TV drifting into bedtime all I have in mind.

PS. Notice there's been no comments for a while...don't have to be, I know...but Lynn says she's been having problems. If anyone else has can you leave a comment letting me know, ha ha! Seriously though are there error messages or what? I'm going to see if I can though that might not tell me much about what happened to you. Maybe it was your work PC telling you you should be!

Monday, 26 September 2011

Don't ask!

Yes, Stef, you did comment but I have to 'approve' what people say before it's published so it doesn't always appear straight away. I suppose I should have put that in 'comments' myself but I'm not sure if people go back there after they've been already...I did add one to Juanita's earlier but wasn't sure if she'd find it...and thank you Lynn, yes I read that too. I hope someone sorts things out for her...

Well, that's the AOB out of the way, I am minded of minutes at meetings, ha ha! I've heard from the GP surgery that the hospital have assured them my urgent neurology referral is in the urgent neurology queue and they'll be in touch in course. Righty ho then, I'll just hang on here, hanging in there trying not to get so sick I become an emergency and jump said queue pushing the mere urgencies out of the way! I think the admin assistant who passed on this message was relieved I didn't verbally shoot her on the spot, bless her!

And now, for the easily taken aback I must warn you of a RANT about to happen. I'll get back to sweetness, light, tolerance and humour when I've got this off my chest I promise....

I have so many things the matter with me at the moment, yet I must remember that it's impolite to list them if anyone asks how I am. I do puzzle over what I'm supposed to say...I mean all the people who call themselves friends know I'm really not well, hardly ever go out or have company or do anything nice without it being on the national news and that it's all down hill from here for me so why do they ask (once in a month of Sundays) if they only expect me to pretend otherwise just to make them feel better. I mean what have they done lately to make me feel better? Oh yes, they asked me how I was, didn't I? Maybe they said we must meet up sometime only just now they're sooo busy! To be honest I actually have more respect for the people who just vanished. I think they're actually being more honest and respectful than those who prefer to pretend they haven't.

Here's the thing guys...I'm going to die whether you like me or not, whether you can deal with it or not...and sometimes I'm just sooo busy doing that that I can't be bothered to join in your ego boost of kidding yourself you care.

Thursday, 28 July 2011

No pain no gain

This morning I'm grateful that last night's medical drama didn't turn into a crisis. I'll spare you the details but had a painful and scary patch patch around 3 am which is the worst time to have them I always think, in the limbo between one day and the next when even the feasibility of getting help is in question should you think it's required. I'm quite a tough cookie really and if I'm frightened there's good reason to be. I rallied though, of course, or I wouldn't be writing this...and seem to be mended again and not be permanently damaged. Well not any more than I was beforehand anyway! Or not any more than I can tell which is all that matters anyway.

Watched a documentary last night about a 13 yr old girl who had for a long time declined a heart transplant that everyone thought she 'should' have. Her reasons were so lucid and valid but a doctor who was sure he knew better stepped in and (anti)social services tried to have her taken into care. She convinced them to leave her and her supportive family alone though...explaining she was perfectly aware she would die without the operation but had no fear of that and as long as she was feeling relatively well she didn't want to be spoiling her life quality with more time in hospital. Even if the tests show my heart's not working properly I must be stronger than people say or I woudn't still be here, she said. There are different kinds of strength, some of which you only find in the most dire of circumstances. My second gratitude of the day is that I know how strong I can be in those. I'd never have found out if I'd had an easier life would I? Oh yes, and I'm sure you'll all be relieved to here the young girl lived long enough to come to her own decision in her own good time to have the transplant and it was successful.

Now I must go and wash my hair which isn't something many people thought I'd live long enough to say ha ha!

Tuesday, 28 June 2011

A post with no name

Today I'm happy because, as the doctors yesterday dismissed my symptoms of deteriorating health, I can avoid hospitals a bit longer woohoo! If you can't have loved people around when you're feeling rough then loved things is good and comforting, I can snuggle up and nurture myself.

My reasoning may sound cackhanded but my experience of treatment (both physically and emotionally) at the hands of the NHS has not been an unmitigated success either in terms of caring and competence. I will spare you the details as partly as I haven't the energy to write them down (they go on and on) and partly as are almost* completely devoid of feelgood factor moments so have no place on here.

No doubt in your wisdom you will have heard of the 'placebo' effect...well there is a nocebo one too whereby you perceive something will do you harm and it does. I am aware that anybody west of Salisbury will say 'Oh, there you are...it's your negative attitude bringing these situations on'. Trust me, it's not. If I had that much power over the actions of others I'd put it to a much more pleasant and therapeutic purpose I'm sure!

Shall I go to acupuncture or stay on the sofa sipping herb tea and napping in front of the TV? Decisions, decisions...

Good thing number two of the day...I had a small plate of beans on toast and actually enjoyed it!

*I can kind of think of one...I'll consider it's suitability by and by

Tuesday, 7 June 2011

Gratitude is good for you...

OK, I've set myself a challenge here...I want to try to write a blog about my life and death without lapsing into self pity about having no one 'real' to tell things to or wallowing in details of illness and treatments and side effects. Thinking about bad things is bad for you...it's clinically proven! But Pollyanna platitudes about positivity irritate the whatevers out of me and that's not healthy either!

So I'm going to start by trying to think of five real things that I've been grateful about in each day. It's not six thirty yet and I haven't put my tea on so just three will do for now. Um...

1) I'm hungry (don't knock it unless you've been seriously unwell)
2) I have easy but healthy food to cook like jacket spuds
3) I have the energy to stand up and chop (see 1) for further explanation

Yeah, I know they could all fit into one but I need to get in that kitchen asap!
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