Treatment update

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

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

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

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

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

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

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

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

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

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?

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.