Sometime - somehow

Treatment update

2010-05-23T23:07:00.000+01:00

It's hard to believe I have been having the ozone and hyperthermia treatment for 2 and a half months now. I am still not used to the claustophobic feeling and intense heat of the hyperthermia sauna. These latter weeks M has been reading Alice in Wonderland and when Mum accompanies me it is the 'thought for the day' Jewish man, whose name escapes me at the moment. I have great difficulty in concentrating on it because of my distress but it is a good book, loved by both my counsellor (who seems to be able to recite much of the poetry in it) and Dr Abdre at the clinic. Isometimes liken myself to Alice, a very small person lost in a strange world but Dr Andre says it's about seeing the world through the eyes of a child - how weall ought to see it.

This week I managed to drive to my textile class from by Jackie and we learned how to transfer a picture from an old book onto canvas (gesso first and usin an acrylic gel). I managed to get the picture transferred so felt quite pleased. I will add a photo at some point.

My days, hours and minutes contiue to roller-coaster between some sense of normality to absolute terror of the future and a need to 'end it all now'. I am struggling deeply with so many things and it is ALL TOO MUCH most of the time. I am listening to bird song and trying relaxing mp3 tracks, breathing and using the em-wave machine. I can't make anyone understand how much turmoil I am in, we are all in really. M is struggling too.

Having been in hospital for a few days after Easter I have some pain management in place; it's not perfect but a bit better and the best thing is we now have an allocated McMillan nurse. Thank you, thank you. It's a start and I hope things will get joined up between all the services I am using.
I might write about that time in hospital - you would not believe it....

Uni update - March 2010

2010-03-14T19:52:00.001Z

After a major panic about the recent assignment looking at various theorists (like Belbin) and group roles and motivation it appears I did do well. In fact I got a 'good pass' - the highest I can get and in fact the only one in class it seems to have done so. Ann (tutor) is very encouraging and says I'm working at very high level. I think she understands why I am...
And so I am trying very hard to hold on to this achievement, it is so hard to keep holding on....
I despair of my brain. One minute virtually suicidal, the next euphoria that 'I did it' - what a rollercoaster ride I am having.

Treatment update

2010-03-14T19:48:00.000Z

The first treatment went well considering my veins but sadly the next one proved impossible. after 3 attempts for canular to be put in I got very upset and with the worry that I could just not do this for another 24 sessions we decide to abandon the intravenous bit of Vitamin C, turning instead to Liposomal Oral Vitamin C, a very new type of vitamin C taht is better absorbed by the body in large quantities. The clinic and treatmetn was supposed to be a positive experience and it was not turning out to be. I feel very guilty because Mark was pinning his hopes I know on this Vit C 'working'. I did not know what to do but could not face one more try even - my arm was incredibly painful as each canular try went in. So now my treatment regime consists of this, building up from 3g daily (which would cost £30 a month) to as many grams as my body can take (the bowel limit) so this could be 12 or even 20 or 40g per day. Each gram comes in one sachet which you mix with water. 1g = £1.
All supplements continue to be very important.
And I am still going to the clinic for the infra-red sauna heat treatment and ozone therapy. We are adding in breathing in ozone for 20 minutes - the ozone must be filtered through olive oil to make it safe.

Oncologist last week - the bone scan shows suspicious areas on right shoulder joint, right knee and lower spine. They are sitting on fence - he won't say it definitely is but given my history.....it is likely to be bone cancer. He wants me to start bisophonates - can be taken orally - as soon as possible. I said I will think about it. I will have a scan in late June to see how the 'unorthodox' - I say 'alternative' treatment - is going. I see him on 8th July.

Treatment

2010-03-06T19:38:00.000Z

Started intravenous Vitamin C yesterday at the Vision of Hope clinic in Brighton - a 2 hour drive - with hyperthermia and ozone therapy. Being claustrophobic this enclosed sauna type tub treatment was difficult and panic inducing BUT I did it. Heat is at 55 degrees C - not pleasant but I kep thinking this is killing the tumours, this is killing the tumours so please God I hope it will.
After a two hour break before vit C can commence Dr Andre was able to get canular in first time - he wanted to do a Hi Five! Clinic was very cold and M and I having difficulty keeping out of panic mode.
Discussed the supplement regime, and it's adjusted slightly but still works out at hundreds per month.
We visited Devil's Dyke, local beauty spot just north of Hove for a late picnic lunch.
Very exhausting day , having left at 7am. I was asleep by 9.30pm - unheard of... all week previously waking with horrible dying nightmares and unable to sleep.

A visit to the oncologist - 12 February 2010

2010-02-13T17:52:00.001Z

trying to sort brighton vision of hope clinic visits for mondays and fridays beginning march.
Oncologist today - wants me to have bone scan and some other test - completely last straw. mark struggling hugely, im struggling with this.

no very last straw is Dr would like me to start some chemo but appreciates we may not want to yet. No evidence either one way or other as to whether starting chemo when there are no symptoms is beneficial or not (prolongs life or not). not overly keen on us doing alternative things well he wouldnt be, head totally messed up. Private treatment - huge cost. Chemo - they have no way of telling if will work or not for each patient and I dont just mean cure I mean tumour reducing/stying static in size.
There is some very good treatment he advocates with good results - only availably privately (NICE doesn't think worth the cost) - guess how much - over £2500 every 3 weeks for life.....................
uni work concentration is rock bottom and has been all last weekend ( Vicar told me I should come to terms with prognosis, be very careful about chasing the wind) and this week also. Trying very hard to do analysing of survey, no further forward on writing report than I was few weeks ago......
Plaster off Tuesday coming - driving apparently can be a few weeks. Have you ever felt there is no point cos at moment I do.

tomorrow different - up down up down high hopeless back and forth just seems how it is
and so many people all struggling through same things - god how awful life is.
will write monday better mood...? get more uni stuff done by then all being well

Scan result

2010-02-09T17:22:00.001Z

As GP said some tumours are bigger, some stayed the same.
Consultant wants me now to be in care of oncologist and we see him this Friday, not neccessarily with view to chemo yet but best we meet to get to know each other before I get really ill. Prognosis is still in years not months.
I feel sick...

Three days

2010-02-06T21:51:00.000Z

Three days to await the result of my scan.
Meanwhile I've been investigating further the alternative treatment side, the holistic, healing approach that seems so much better than the only thing the NHS can offer - paliative chemo when I get to be in pain... God, no I don't want to let it get that far, I want to do something positive NOW.
My emotions see-saw between -1000 and +10.
Positivity is the key to healing, supplements, diet, alternative treatments can help but positivity is the key.
The pain in my head, my heart keeps me from rising above +10, but do it I must.
We have been to visit the Vision of Hope clinic in Brighton, an amazingly positive doctor, and I came away feeling yes, that is what I must do.
The reality is the pain of intravenous treatments on veins which are very poor, the horrendous expense (£200 per session - 2 per week, 3 months and weekly for some more months to come) plus too a huge array of supplements, each one affordable (except biobran) but together ridiculous sums, consultation fees, petrol, time off work - 2 days for us both per week. Mark is keen I do it, I am so scared we are kidding ourselves this will work. Yet I see the science, the trials and evidence are small and often anecdotal; they ring true, sensible, often based on long ago healings things. Why do I waiver?
Conflicting advice, go home, make the time you have left precious;
Go home, you're ill, wait to have chemo, why worry of anything else, why spend your money, take a holiday;
Don't be fooled by charletan practices, accept your death is inevitable, take steps to make your will, set your affairs in order, realise your purpose is to help people, love people
Do not think you will die, you won't, have goals, aims in life, be selfish, look after YOU, NOTHING is impossible,
Take small steps, don't panic....

CT Scan

2010-01-20T18:34:00.002Z

Tomorrow it's my scan, absolutely petrified. Can't I know do think about influencing result; if tumour growing it will be like that. Wonder if taking these more supplements and back on track with dairy-free will have done any good.
No-one will let me grieve, feel loss for my life - HAVE TO BE POSITIVE - only way you will beat it, get well again. No-one will give me answers, no-one - I don't even know how long it will be before I start to 'have symptoms'.
The planning of the integrated approach is turning into an alternative way only. Have spoken to Cancer Options advisory service and they are very helpful and positive. A good report with evidence and research on the things that may help me for £150 for consultation plus a followup chat and emails. They say they are not biased towards practioners or supplements. I have to trust them on that otherwise I'll go crazy trying to find information. Have huge file of printouts off the web, I could write my thesis on the subject of how impossible it is for you to get support for this approach from NHS. You are hitting your head against brick wall if you even dare try. My breast care nurse said don't do it - spend the money on a family holiday. The NHS can only offer me 'palliative' chemo. Now I want to live I want more than that, I have to try things don't I? Things that are trialled only in small trials but have good anecdotal evidence they can work. Chemo is never going to work. I've been sent a leaflet to go on a 6 week therapeutic course for patients who have reached 'palliative not curable' stage in their treatment options. I haven't reached that stage have I? Surely not. Please God don't let that be so...

Things I've been doing

2010-01-07T15:26:00.013Z

Pre Christmas spent some time 'making'. to keep very occupied. Made for someone special to me a 'pretty box' to put her present in. Used bits paper, stamps, metal embellishments, pieces of music paper and some 'fun' putting all together, took a whole morning but after initial start became more relaxing.

Also made some Christmas cards using the heat transfer dye method and added some embroidery. Used nativity clip-art to make masks for initial designs.

Break time

2010-01-07T14:59:00.004Z

Slipped 3 days ago, broke left wrist. how stupid, taking photos of early morning sun through trees.

Photo quality not even that good!

lots of pain, in half plaster, couldnt attend hospital to see the doctor and possible replastering cos of SNOW.

Another year, another hope?

2010-01-02T22:12:00.004Z

I've never liked new years and this one is no exception. Will it bring hope or terrifying reality - the tumour is growing.
My scan is booked for 3 weeks time and then we'll know if it is growing fast or slow.
All the anti-oxidants, good diet - how can that have worked by now? It's too soon.
The brilliant NHS just leaves you all alone- there is so much to understand about complementary or alternative therapy. But Christmas must happen, too busy before, two weeks closure - never caring my tumour is growing.
If I didn't have Gina I would be more in depths of despair than I am - I cry almost all the time I am on my own. With people, with Mark I am another person, some-one who isn't dying, some-one who has so much to do, so many things to achieve, to help people, to love people but there is so little time now. I AM PETRIFIED. No-one will let me grieve. I must be positive - it's the only way. But I am sure positive people die too. I cannot die with the pain in my head , I just can't.
I must, as some-one dear to me said, live for today, hope for tomorrow.

Well it happened..

2009-12-04T23:01:00.002Z

I knew it woudl , I have felt so ill, I knew it woudl come back. No-one believed me, they all said it's just you being anxious.
Tuesday 17 November - my death sentence, 2- 5 years max, probably less, in fact definotely less. This week consultant said to Mark 5 years would be very lucky.

I am in such pain in my heart, I don't know what to do. One weekend before suicidal, one week after too scared to die, to much to do, too much pain to leave other people.

Strange life, two days after I did my presentation in front of my fellow students and amzed them all. Appeared confident and they coudl hear me... and did it without looking at screen or notes. What an Oscar winning performance, inside I am dying.

Cancer threat (CT)

2009-11-08T23:22:00.001Z

The sharpened dagger enters
Not once, not twice but thrice
Bruising, purple
As the robe of Christ.

Colourless dye
All-seeing, all-knowing
Search out the deadly sin
Seek out tortuous, moving guilt
Wrapped invisibly to naked eye.
Strangling and killing.

Rush your warmth, cold comfort borne
Shake fear and pain inside the tomb
Liquid death knell do your deed
Seek out cells and shade them
A rainbow, a myriad of colour.
No room to move, no breath to take.

A picture, snapshot
Of how it appears to man who
Cannot see the gram of death
Behind the weary bones.

Growing, enveloping,
Rushing, destroying
Tiny, tiny, tiny specks
Breaking free, multiplying
Destroying equilibrium
Destroying hope
Destroying joy
Destroying peace.

And when finally
The result appears
It’s clear and safe
- this time
Will not anxiety reign free
To begin again another day?

Isle of Wight

2009-11-02T19:49:00.007Z

A little break last week amidst the anxiety of C being in hospital. We had chosen a hotel on the seafront at Sandown and had a balcony room. It was lovely to wake to the waves gently rushing forwards and to the sunrise over the sea. We pretty much covered most of the island in travel apart from Yarmouth area and Newport. My favourite village was Godshill - a kind of grockley Miss Marple place.

And here's a photo of Bembridge Windmill too.

Uni - is it week 4 or 5?

2009-10-22T22:35:00.003+01:00

Hmm work for Uni is piling up and I've had to organise two sessions to 'shadow' work colleagues in preparation for a reflective essay due in in early December. Additionally we must produce a presentation on an aspect of our work to the group in a few weeks. For the shadowing I've chosen to focus on the reason why/how they use the pupil achievement data and of course the reflection will be about my part in it and how I could better support these colleagues in their role. The first unit about education is very useful and today we looked at good teaching and learning styles.
I think it must be week 4.

It's a girl thing

2009-10-22T22:15:00.005+01:00

Purchased these stamps from Sugar Nellie for making cards for breast cancer awareness month. They were beautiful stamps to use and I was pleased with the result. Money raised I have sent to Breast Cancer Campaign. I marketed the cards at the craft fair as being for people to give to someone they knew who had had or survived cancer or just to let a friend know they cared. There was lots of interest and I have sold about half of the ones I made.

I bought a stamp which said 'it's a girl thing' and stamped this on the back of every card.

A little stamping

2009-10-18T22:01:00.003+01:00

Made a card a couple of weeks ago for my sister who was moving into a bungalow. I've used background papers and various stamps and acetate pictures from Crafty Individuals. Also printed some quotes and photos onto Safmat and burnished them on to make a kind of collage effect.

Heat Transfer Dyeing

2009-10-18T21:19:00.012+01:00

Further to my post about Jackie's workshop here are the photos of the work we did. And I made one piece of material into an engagement card for my sister and fiance. You can see they are all 'happy accidents'.

Jackie said we could buy them through Fibrecrafts and I've ordered the catalogue but whilst waiting I looked up on Google and came across Ario website which does cheaper transfer dye - I don't know if it's any good but it might be worth a try.

A kind of help

2009-10-10T23:45:00.005+01:00

It's funny when you are feeling like the proverbial '**' how if you are not looking something helps a little tiny bit to make you feel like things could just be okay for just a very little while. And so it is with Jackie's textile workshops and how it is with Gina. It doesn't last however and by the time I'm part way down the A340 (and sometimes just getting in my car) I'm in floods of tears again.
After a particularly horrible week at work I had a little hour or two of calm with Jackie and we did some hot iron fabric transfer work using leaves and lace as masks on fabric. It became clear that you didn't have to be good, the 'happy accidents' just worked and you ended up with a passable result that seemed to please. Experimenting was the key and for a short while I began to breathe a little freer. Back in my car, my house, my work, reality is there and I am me and there is no getting away from that fact that I have this huge pain in head and heart and body and I don't know how to make it all go away and I can't breathe and life is overwhelming and why did Andrew go and why did Janet leave and why is she so much in my head it is so very very painful I can't bear it.

Craft event

2009-10-10T23:40:00.006+01:00

I was invited to have a table selling my cards in aid of breast cancer research charities at a church Harvest Festival in Ashford Hill. I made approx £90. By all accounts a very good two days and the 'photo cards' sold really well. I met the Bishop of Winchester. He looked at my book and had a copy. It seemed a funny thing for a Bishop to read a book called Flying Towards Hell, but well he said he would and he would use it in his chapel. I wonder if he will.

No medication

2009-10-10T23:37:00.002+01:00

People know now , like Mark I'm not on medication. Are they concerned or want ot keep me quiet. How can you medicate for stress? For anxiety? For the fact you are dying? How can you.
I have to have another CT scan. It's to make me feel better, they won't believe the lump is real. If I'm not dying how come I feel so ill, how come my heart is in such pain. How come that?

Uni - week 3

2009-10-10T23:35:00.001+01:00

I'm feeling very down about the whole thing. I can't organise myself and my work is very stressful and I can't go on.

University

2009-09-29T20:54:00.002+01:00

Last Thursday I started my degree course in Education Admin. Absolutely petrified. It was a lot of introduction to the university - IT things like how to access the VLE (virtual learning environment) and so that was okay but when we had to do an exercise my concentration just went and I do not even know why we had to do it.
I am very very stressed, very weepy and not really coping at work. I'm not sleeping, not eating and trying to do too much in the effort to block out pain. It doesn't work and I think I am in 'crisis' as Andrew said before he left. I am so scared of going downhill. Gina is going to do some kind of therapy work next time entitled The Journey. I am beginning to need her so much more and have put our sessions to forthnightly again cos I can't afford to get attached to her.

Loss

2009-09-15T19:26:00.003+01:00

I cannot describe the loneliness and utter pain I feel. I am thinking how to describe but I can't.
I cannot afford to go backwards, I really can't. My visit to the Vyne with A and G today was very very painful; I should win an Oscar for my acting performance. I didn't even get out of the car-park afterwards before the choking tears and gasping breath came. Andrew did seem genuinely pleased with the 'thank you' book and picture I had made for him. I had said I thought it would be cathartic to do but in fact it was not and there were many many tears in the making. I am petrified, scared, lost and hopeless and only Gina cares now - but understands? I do not know.
The only person in this crisis I can phone is Gina - I have no friends and that is a fact I am so painfully aware of when I rang for her and she wasn't there and the MHT receptionist asked if some-one could sit with me, be with me. There is no-one. All I wanted was a hug and some-one to understand. So very hard when I don't even know why I'm like this.

On Target

2009-09-12T20:12:00.003+01:00

On target

White is the colour of my emptiness.
Black is the colour of my life.
Blue is the colour of my support.
Red is the colour of my heart.
Ready.
Take aim
Fire.
Pull back the arrow
Shoot long and true
Bull’s-eye !
Yellow is the colour of my pain.

Back to work

2009-09-07T21:44:00.002+01:00

I was supposed to see Andrew for last time tomorrow but he can't make it so now it will be in a week's time, head is mad and crazy, still not sleeping. Work is just like I have never had a break - back into major stress, too much to do and not enough time at work to do it in. Have tried to concentrate this last week of holiday on Uni preparation - God I don't know why I thought I could do it. Poetry is flowing - it seems when I am miserable it does. I can't stop cyring when I am on my own - rest of time brave and smiley face and everyone 's all okay and I am coping. If they could see inside my head......I am petrified and no-one cares, I can't talk to anyone - it sounds ridiculous to say my counsellor is leaving and I can't cope. He can't he just can't how can he leave me, how can he?

Keeping busy

2009-08-29T22:31:00.002+01:00

It is now only 10 days until I have to say goodbye to Andrew and I don't know how to cope, what to do, I cry everyday on my own and then put on brave face and keep VERY VERY busy. M asked me one night, as I was crying why I was, when I told him he just turned over and got cross. I am so scared, please God don't let me go backwards, I have to keep going.
My bones hurt, I'm afraid the cancer is coming back, I lie awake at night very afraid and can't sleep, then wake early and can't eat. M says I'm losing weight, perhaps I am. How strange life is - 2 years ago I just wanted to die, now with A and G help I don't, well I don't actually know if I don't, I don't think I care except there is so much to do to pass on to the girls and Mark, so many things to sort, so much to do.
Back to work this Thursday after summer break, so many things I didn't do, so many more things to do. The summerhouse is tkaing up lots of time, M is doing so well with it and I help by painting, holding wood, passing nails, and so much garden tidying. Have made 30 photo cards over last 2 days.

How weird

2009-08-06T20:27:00.002+01:00

Life goes on as normal
How weird
My life is a crazy mess
And your life
Just goes on
Ignore me
Ignore me
Ignore my pain
Who am I
To dare
To think
I matter?

Ashes to ashes

2009-08-06T20:21:00.006+01:00

Just a poem I've written following a visit to Dartmoor in Devon last week. My uncle's ashes are blowing in the wind just there but the thoughts for me are about Janet. The poem is written as if it were by my aunt and is called Ashes to Ashes.

Climbing on the
Rocky, peaty ground
Past mere; on moor
With pounding heart.
Through cooling wind,
Entrancing sky
Below nimbus clouds,
Brooding, full.

Summer bracken uncurled
With fingered fronds;
Home to tiny oaks,
To butterfly; to bee.
Heather abundant
In muted lilac
And the golden spines
Of thorny gorse.
Foxgloves marked
With linen specks
Where elves placed
Fingers long ago.

Aloft a buzzard circling
Calling to its mate
Rising ever upwards
Upon a thermal air

Noble mass of granite rock
Piled precariously high
Mysteriously concealing
A sacred life,
A life so long,
And proud and still,
Watching silently
The moorland few.

Mystifying life:
Secrets held;
Family life:
Secrets told;
Layered life
From dawn of time
Through pain and love
And peace again.

Spirit lay down
And rest awhile
In crevice moss
Away from chills
How many men
Have trod the path
Enlightened then -
Forgotten now?

But I won’t forget:

Your soul lives on
Ever blown
By wind, by rain
Ever more;
Ever same.

Going crazy

2009-08-05T08:35:00.002+01:00

Help me i'm goign crazy my head is going mad. Andrew is leaving I don't know what to do I can't go through all this again, i acn't get so depressed I wont function there is so much to do my university stuff is looming i ahve to practise my study skills, i have cards to make and loads of things, i feel very VERY ill. I dont want to live any more - it sounds melodramatic but the pain in my heart from J and A is huge now and I don't know what to do. everyone says you are gettign better i almost bagan to believe it - this faking thing perhaps i should havetried to do better after J left me, perhaps she wouldnt be in my head so much now NO that is rubbish she is always in my head oh God what shall I do i feel sick and scared and cant stop cryign cant sleep last night -one hour sleep at 5. please help me God No God I hate you I don't wnat you I don't. I cant do THIS I really cant. i thought i was gettign better everyone says so it is such a lie unless you sort what is in your heart your head what has made you hate yourself what makes you have people in your head how can i do it on my own without Andrew he was going to make it work he said he could he siad we all could as a team me, him Gina but its no good now.God forgive me for what i've been doing.

Book live

2009-07-19T16:18:00.003+01:00

After much deliberation I decided to 'go live' with my book on blurb.com. Did I say I've called it Flying towards Hell. I never really thought anyone would notice it was there but someone has commented yesterday and very positively. I'm gving proceeds to Breast Cancer Research but ofcourse it really could take 50 years to even get any sales. Actually with Blurb you need to keep the book 'active' which basically means someone has to buy one every 12 months or they take it off their server.
A and G encouraged me to put it together and I hope if it helps even just one person to feel they are not so alone in their crazy mixed-up world then that will be okay.

Longstock

2009-07-15T22:25:00.008+01:00

It seems I have to try and replace J in my head and this I know I must, must do. You are supposed to think of nice things, nice places and calm yourself down, replace the intrusive, obsessive thoughts and all will be well. How difficult that it - she is always there intruding on the good stuff, being in the moment. Concentrate concentrate - be ever mindful of surroundings, happenings, people, things, signs, flowers, the world. Your mind is so complicated - by necessity we think - we feel. We feel - we think. Life in perpetuity. How I wish for a life with no thought, no anxieties, no people in my head - just perfect white silent peace.

Longstock Water Gardens near Stockbridge - so very pretty. I worked hard not to allow J in those memories of it but alas she is there, always there and she wasn't even there but she is there.

Today I have tried the Emwave machine Gina lent me yesterday. It appears incoherence in the heart rhythm caused by stress can be 'fixed' with this little gadget. My first try and I ended up in tears cos I can't make it work, I don't understand the lights system it has. Try again tomorrow.

Scrap work

2009-07-14T22:56:00.006+01:00

Well this site has become a bit of a ad hoc diary - and I really should add more stuff. Very busy at work, very busy at home trying to do EVERYTHING. Have completed my latest scrapbook page - local club challenge is to use stitching - so I practised some of the cross-stitches etc - I've been doing textile workshops with Jackie (Stitchworks blog) - small group work once a month; she is very inspiring and I've collected together various 'mixed media' items. Oh yes I've just 'won' a collection of ephemera on e-bay - so that should be with me by the weekend. Really I just have to START. Have a lovely thing I want to do over the august holidays.
University taster sessions have now finished - last week was mind-mapping. My life in a mind-map - directions to go, live, be - is very scary. A and G continue to be a big force in my life and keep me going, I don't know what I'd do if they weren't there to support. Very bad screaming dreams haunt me night and day and I am tearful on my own. My head is crazy inside - what to do but keep going?

Made it - maybe

2009-06-24T21:07:00.006+01:00

Have heard I have been accepted by University to do Foundation degree in Education Administration, went for first taster session last night, very scary. It is so hard with to find positive things about me and we had to do some stuff in reflective writing. Degree is part-time, takes 3 years with option to top up to BA Hons. Will I still be alive in 3 years - who knows? Today I had check up by surgeon - she says all is well , may have to have scan before next visit to her.

Head still mad, trying to do everything - have been to Aqua class, scrapbook class and textile class. Trying so hard to keep busy and get J out of my mind, she just won't go. I think University application is absolute madness on my part - why oh why did I apply? Reading is so difficult - writing will be harder still I'm sure. Mark says I'm stubborn - some people say I'm determined so maybe these things I can't recognise in myself will get me through.

Made some more cards to sell for Breast Cancer Research - photo ones this time.

Flying towards Hell

2009-06-10T23:10:00.004+01:00

Well I have my book in my hands - decision now whether to make public on blurb.com or not. I have had one positive response from someone I asked to look at it for me and they even bought a copy!

Book is titled 'Flying towards Hell' after much heart-searching to get just the right title. So many I chose were actually already published. This comes from a phrase in one of my poems.

Blurb is brilliant really - so easy to use and produce a quite professional looking book. I made a black/white copy too just cos I coudl and cos it's cheaper. If i do sell it I am giving all proceeds to Breakthrough Breast Cancer. Talking of charity I have made another £60 through selling cards at work for Breast Cancer Research charities.

My head is going mad, not sleeping, weeping in car, so much to do, so little time now - scary days.

Poetry

2009-05-30T22:23:00.002+01:00

Am putting together my poetry in a book on Blurb.com It's quite difficult to put it all together and think for the words for back page. Mark isn't interested, in fact he thinks I shouldn't be doing it. A & G think it is a good thing and want a copy of the book when published, and so does my mum, not so sure when she reads all the poems though.
My friend Jane left yesterday to go to Worthing. I feel bereft and couldn't sleep, not that we were very good frineds, well I find it hard to 'give myself' to other people in case they get inside my head like Janet is. Her leaving party showed me how wonderful she is and how many many people love her and how that will never be like that for me - not ever.

Mind dissolves

2009-04-19T17:52:00.001+01:00

Flying into the grey of a dishevelled mind
There is no hope, no way to go
Thoughts are contorted and flawed
The mind sings no more

No way out, no way to go
The mind is numb, the mind is full.
Like crazy paving mixed
Amongst the seeds of time

Living like they want you to
Fakery and smiles
Heart tearing with pain
Crying silent tears.

Dispirited passion
Moving in numbed circles
That ever decrease
Strangling the very life of you.

Neither great joy nor feeling
Nor God, nor compassion
Just painful memories
Burning the tender soul

The mind twists and struggles
Dissolving in the mist
In the desperate duty to live
The life that God intended.

Feeling Blue

2009-04-19T17:44:00.004+01:00

Visited bluebell woods today, nice to be with Mark and take photos but J is huge in my head and it HURTS.

I cannot explain to anyone how I feel cos A and G try to understand but I don't think they do really.

Am continuing to write poetry and trying very hard to keep smiling whilst inside I am screaming and crying.

CT result

2009-03-04T18:42:00.003Z

Result of CT scan today. After yet another sleepless night we were told my scan is clear. Well what they were monitoring on a rib turns out to be scar tissue. So they are very pleased with me and told me to go home and not worry. I will have another check-up in June and another CT scan in a year's time. Maybe my veins will recover a bit by then.

Am I supposed to feel good - why don't I?

CT scan

2009-02-16T22:22:00.004Z

Horrendous day. No food or drink from 9ish this morning and had a very worrying night. Scan was booked for 2pm and we arrived a bit early. As usual I chose the orange flavoured barium mixture drink - drink this over 45 minutes, then off to the room for the scan. First of course you have to have a canular put in so they can inject iodine into your vein to highlight your blood vessels. I told them my veins are rubbish after the chemo and they suggested I lay on the bed. Five tries later and me panicking and it hurting they finally decided I should go up to the Basing Unit (the chemo ward) to have the canular put in there. By this time I was very miserable and after warming up my hand and arm they had another go. It took another 3 attempts before it was finally in. I did not want them to put it in my right arm cos of the lymphodema and they said they wouldn't except in extreme cases. Back to the CT scan room and they were able to inject the iodine and do the scan.
I do not know which is worse - having nightmares about the cancer spreading and not knowing or having this horrendous time every time I go for a CT scan.

Lymphodema

2009-02-09T20:43:00.003Z

It is bad enough getting cancer, having a mastectomy but to get lymphodema is just an insult. It came about after I'd finished radiotherapy and chemo and my hand and arm was very swollen.
Today I had yet another review of the size of my arm - its 13% bigger than left side. It has been as low as 8 and as high as 15%. You are meant to massage the lymph fluid and wear a compression sleeve - the latter I do, the former I don't do any more after the recurrence of cancer because I feel sure moving the lymph around the body from the 'infected side' into the neck, across the chest may have contributed to the cancer returning. I don't know. I spoke to my consultant -she said that is a possibility, small but possible.
I HATE wearing a sleeve.

Snow in the village

2009-02-06T13:27:00.005Z

As like everyone we are in the grips of snow. Having worked 3 days at home this week I also spent a little while going around our village taking photos of snow covered buildings and the Common.

My counselling was cancelled and I feel very miserable. I have had my hair cut to 'cheer' myself up.

This week we went to see Rabbi Lionel Blue (of Thought for the Day - Radio 4 fame). He is 79 today and very sprightly and can tell a good joke. He signed one of his books for me "God Bless". He said when he feels down he does something - anything - even sorting socks.

The Year of the Ox

2009-01-14T21:09:00.005Z

Well I've made some Chinese New Year cards now, so unsure about whether the Chinese characters are saying the right thing.

I am sure there is a market for DoCrafts or other manufacturers to produce Chinese New Year stickers etc, but hopefully they will put what the characters mean in English. I bought the DoCraft oriental kit but it is impossible to tell whether the papers and brads and stickers are saying things in Japanese or Chinese and whether what they say might offend.

A new year

2009-01-09T21:45:00.003Z

It seems that the days are passing by quicker now. Until recently time just dragged and dragged - and I couldn't summon up any 'get up and go' to do anything. Now I want to do more and feel stressed and tired cos I'm not getting everything done. I hope this means I'm getting better.
Sleep is very poor at the moment and the obsession with Janet - my ex-counsellor is bad and ongoing. She is in my head all the time and I don't think anyone understands. She is there all the time and invades my thoughts - good or bad - and my dreams. I might add my poem about obsession sometime. Add the bad dreams about dying and maybe that's why my husband calls me the 'phantom quilt-turner'.

Trying to make Chinese New Year cards to sell. It's impossible to get stickers saying Happy New Year in Chinese and have had to resort to making my own from downloaded .gifs off the Internet.

I got a new Philips juicer for Christmas - it's amazing - so easy to clean and you can dishwash it but you hardly ever need to. Juices so far have mostly been fruit but I did try a pear,apple and broccoli one with a little ginger and it was amazingly tasty. Have booked to go back to Penny Brohn centre later this month to do a one-day cookery course.

And my next CT scan is in February.....

Making cards

2008-11-17T18:58:00.002Z

I have been making cards for some time - Christmas cards for last four years. Many people say making cards help you forget your problems but I get quite anxious making things. I have loads of stuff though - good intentions and even have a craft room now - my daughter's old bedroom.
I took some baby cards to work and people said why don't you make some more to bring in to sell. So I decided to sell them for Breast Cancer Campaign. I got some personalised stickers to go on the back from Able-Lable and also some of the cellophane bags. I haven't really got going yet but made some Diwali cards last month and sold them so that's a start. This weekend I made some simple congratulation cards for some of our students who have just passed their course.

A sad day

2008-11-09T22:43:00.002Z

My uncle Henry died last night. He was 94 and had had a good life but he was doing so well, had just come out of hospital. He was talking to my aunt, holding her hand and he closed his eyes and died. He was such a lovely man - a real gentleman and I will miss him.

Visit to Penny Brohn Cancer Care centre

2008-11-01T21:35:00.005Z

On Wednesday I drove to Bristol to the Penny Brohn Cancer Care centre to go on a Nutrition course. The course focused on healthy eating and what they call their Bristol Approach diet plan. The centre supports people living with or caring for someone with cancer. I so wish I had known about it when I first was diagnosed. They do a 2 day and 5 day residential course where they tell you about their approach and introduce you to meditation and complementary therapies and good nutrition and give you time to take stock, rest and gain support and understanding..
In the morning we had a science lesson about how food is taken in by our bodies and used in a supportive way. We had lunch in their lovely restaurant and were able to sample some of the herbal teas and also I tried some vegetable juices. It was good to note that my dairy-free approach to possibly beating a recurrence of cancer is well supported; milk really is a no-no. Add lots of organic fruit and veg, and beans, pulses, nuts, whole-foods, some eggs and if you aren't vegan like me then you can add chicken and fish. Food supplements of a good quality are also recommended. I guess really their approach is very like the Jane Plant diet but they do not advocate very much soya, as she does.

I came away feeling more hopeful that what I am doing is right even though following a wholesome vegan diet is hard work. Need to get a good juicer now!

Visit the Penny Brohn website - courses page.

Wendy Richard's cancer

2008-10-05T22:08:00.003+01:00

This is so sad and it scares me. From second diagnosis to this is 6 years. That's all. And people tell me not to worry.
My sister says if I think I'm going to die then I need to start living again and make the very most of my life with Mark.
My counsellor says Live for Now - in the now. Practice mindfulness.
I need to start now but my mind is full of such unhelpful thoughts. STOP.
Today we saw a heron in our garden. I moved suddenly to see him and he flew off.

Cancer - a poem by AEO

2008-09-25T16:26:00.002+01:00

You think
Why me?
Why me?

It’s my fault
I cried
I prayed
Life end
In sight, in sight

I have never felt so alone
This pain
The guilt
The time bomb ticking
Fight but for how long?
How long?
How long?

Disfigured, ugly
Woman removed
Isolated
Sick
Life goes on
But in my head I am dying

Cells multiplying
Out of control
No control
Lymph moving
And destroying
And in my head I am dying

The spirit of death
Visits often
In my sleep
Can’t sleep
Can’t sleep
The silent destroyer
Will return again
And I’ll be gone.

CT Scan

2008-09-25T16:07:00.004+01:00

I had a follow-up CT scan a few weeks ago and last week went back to get the result. This is the second CT scan after the re-occurence.
All clear.
The consultant was pleased as was Mark. And everyone I texted afterwards. I asked the consultant about my prognosis cos I'd read that for Stage 3 you have a 30 -50% chance of surviving 5 years and only 20 - 30% chance of surviving ten. She said that was right. They didn't tell me that last time. However diet and a positive attitude can help. I'm doing the healthy diet thing - more of that later - but positivity is just not there. I am SO..OO scared. Coming out of serious depression and just wanting to die I now find myself in the weird position of being scared of dying. Not for myself but for Mark and the girls.
I need to get on with my life and Mark says make the most of the time left, but how? There is a big black cloud hanging over me and the worry of yet another occurence or worse secondary cancer is there in my mind all the time - awake or asleep.
I have written a poem about cancer re-ocurring and will share it with you.

Not ill?

2008-09-22T18:49:00.004+01:00

I wrote this poem when my depression started, struggling with coming to terms with being ill again and whether I could stop it happening. But I could not.

not ill
but will
self will
no will
in mind
to find
the will
until
the mind
splits

to ill .....to sane
too ill .....hang on
to cope.....there’s good
to care ..... there’s life
their pain..... there’s pain

the pain
is ill
ill is pain
back again
not ill
not there
no will
no way

to go ......to stay

First post

2008-09-22T17:11:00.004+01:00

I am thinking this just a blog to express my thoughts.
I do not know what will become of it.
But I will put some of my thoughts, poems and 'doings' on it.

I am recovering from a difficult episode of depression and the diagnosis of breast cancer - twice.
I do not know where I am going yet or even how to get there.
This is a journey. And I hope I make it.