Another good woman….

This weekend has been a little unexpected. Saturday morning we got up yet again at 
the crack of dawn to get on our way to a conference in Exeter. Ordinarily I wouldn't book to 
go to canSer conferences but this event had Prof Vogl doing a presentation and seeing 
as I very nearly went to see him and his treatment TACE is still an option for the future 
we thought it would be a great opportunity to get the nitty gritty and meet the man 
himself. The cost of the conference for one day was a hefty £62.50 each. I didn't want to 
see any other presentations. 

We arrived early being diligent as usual and we mooched around the scant stalls 
that were there selling supplements, juices and more. To be honest I thought there 
would be a lot more there.

Actually to point out when I booked the event it was being held in Bristol but at the last 
minute it was changed to Exeter apparently because someone made a complaint about 
it in Bristol. Something to do with not approving of complementary therapies for canSer? 
This was clearly annoying because I am not sure I would have booked in the first place 
had it been in Exeter. Anyway, I went to a volunteer and asked when can we be seated to 
see Prof Vogl's presentation to be told he wasn't there! What? His son had been ill and 
he couldn't attend. I asked how long they knew that he wasn't coming? A few days! What? 
And they didn't tell anyone? No, they had a video presentation to show instead.
Not good enough. Both our hearts sank and we felt gutted to be honest. The fact we 
could have been doing something else, the wasted time and money. The volunteer said 
there are lots of other good presenters today.. Like who? She didn't know... 

We asked to speak to the event organiser. Pete's mind was whirring and I could tell 
something was really wrong. He wanted to leave and let me speak to the organiser 
as he felt he might lose his temper but I made him hang on. He was so very calm 
with Kat, the organiser. She was hugely apologetic and we didn't blame Prof Vogl or her
for him not being there but they should have informed us. Pete calmly explained that 
for people with canSer time is of the utmost importance and having huge disappointments 
and let downs are no good for stress levels. He said that is time we will never get back. 
He got his point across amazingly. Then he left to go to back to the car. 
Kat said we could have a refund and said she would get us the video presentation. 
I have emailed her today but no reply as yet.
 
I felt guilty as it was me that convinced Peter we should go. He was lovely but we both 
felt let down. You can never tell what is going to happen, can you?
(We also missed England play New Zealand at rugby.. That too was annoying)
 
Still Saturday afternoon turned out to be a corker of a day and we pottered in the garden
 getting more jobs done and soaking up the sun.
 
We woke Sunday wrapped up in each others cuddles and I had a plan to make the 
most of the weather and do a job that had been on my list for almost a year.. Creosote 
the cabin. Bounding to get my work clothes on, Pete stood in front of me and said 
I should cuddle him.... Why? 
Now I don't usually ask why, as I love cuddles, but I could tell something was wrong.
He had just looked at his phone and read a message that had been sent to him at about
6am from my friends husband. It said , 'Leanne left us this morning.'
Uh... I feel sick even thinking about it. I hadn't heard from Leanne since 
she was admitted to hospital a week ago, she had been messaging Pete as she didn't 
want to worry me telling him that the chemo had done its worst and stripped her body 
to the point of no longer being able to have any more. They had also found she had 
pneumonia in her other lung. As always we sent messages of positivity to get well and look
after herself and right throughout my holiday I was worried about her, sending her messages 
hoping she was reading them and hoping even more she would reply. I feared the worst and 
sent her hubby a message on Wednesday. He said they were taking her home on Friday. 
We are so saddened. Sunday was a blur. I got dressed and proceeded to carry on with the painting. 
Both of us worked in silence and every now and then we would say something that we were 
thinking about her. I honestly feel a hole. Leanne was younger than me. She didn't want to die 
and really believed she could fight it. 

We can't comprehend how hard it must be for her family and husband. We only knew her briefly 
and we feel a huge loss. She was my canSer buddy. We'd message every day on text, Facebook
or email. We'd chat on the phone and sound it out. Meeting her in London recently was just like 
we had known each other for years and her hubby said we were like sisters. We had plans 
for the future. I thought we were both going to conquer this disease and prognosis together.
I really believed if anyone could do it, Leanne could. Our stories are so similar.... Until now. 

I can't help but be honest and tell you that I start thinking 'Oh god... How long till it's me?'
I've noticed from the past few deaths as to how quick it all happens. Within a few days it's over. 
Only a week before planning on future treatment to literally dying. I don't want to die reluctantly. 
Does that makes sense? I don't want to be afraid and I don't want to fight dying. 
I want to be a peace with it. I hope Leanne felt peace. I already miss her....
 
I meditated this morning and Leanne was there. I feel she is one of my angels.
 
I don't have any intention of giving up and I will not be reading about other canSer 
survivors saddening stories any more. (I just read one this morning not by looking for it, 
it just came up on my feed, and that scared me enough not to read any more.) 
I can live my life as I am. I believe I am doing the right thing and I will battle on until it's 
my time.. But I still believe I will be a miracle...

 

An update on my treatment…

So here’s an update with what’s been happening with regards to treatment.

I had a vaccination a few weeks ago and was due to go back to the London Clinic yesterday. I felt with the state of the current to vaccination sites that I would be overdoing it by having yet another one so called the clinic first thing in the morning. A doctor called me back and asked what size they were and if they were weeping. I described them both and said that they had been really oozing for the last few weeks and that the old one had reactivated. She said that it was a good thing, to keep them infection free and try not to cover them. She said if I thought they were infected to get them swabbed and checked by the GP. I told her I have a Bear taking care of them… I am to call back in a fortnight to see if they are better and if I am ready for my next round.

Whilst i was a way I had an email from Doctor Gonsalves at St Georges hospital and he gave me the low down on the procedure that I am booked for on the 19th June. I am to call the ward the day before to see if they have a bed for me and they will tell me if I should be going in the night before. Then I was advised the usual stuff before having a general anaesthetic; no eating etc… And that I am to have bloods taken that day too.

I finished taking GcMAF some time ago and now I am back using Naltrexone to the full amount of about 4.5ml per day. I am using the liquid form provided to me by the LDN Research trust.  However even though I no longer use the injections or nebuliser for GcMAF I have since bought the easy kit for the GcMAF yoghurt otherwise known as Bravo probiotic.

http://www.bravoprobiotic.com/index.php/what-is-bravo-probiotic

 

I am yet to get started but so far it looks pretty good. I haven’t bought an kits up until now because they looked a bit of a faff and I knew I would have to get myself properly geared up for it.  Then my good friend Rona; http://bisforbananascisforcancer.wordpress.com/  posted on her blog about the easy kit and it being on special offer. Well always looking for an easier route and a bit of deal I bought it. It arrived today and is in two tidy zip bags with clear and concise instructions. I am looking forward to making it with my trusty assistant. Or is it the other way round?! Pete can make it whilst I watch and take notes… haha.

The thing with the yoghurt is, even though I don’t eat dairy, I feel having good gut health and probiotics is essential for keeping well and fighting disease. Not only that, of course the other great thing is that it contains GcMAF therefore hopefully sending the macrophages in there to fight canSer but it does contain 40 strains of probiotics which is higher than the tablet forms sold in your local health store.

OK, it’s not cheap then nothing is when you have canSer. It seems everyone is out to bleed us dry.

Here is a link if you would like to purchase them;

http://www.bravoprobiotic.com/index.php/shopping

Supplement wise i am still plugging away at what I think is helping me. I am still concerned about my natural killer cells being low and I am ordering more reishi to stock on. I am also considering getting a stronger strain of cordyceps to include with the Coriolus I take.

I am unsure how my vitamin D levels are since they were rated as being far too high. I think I will do another test later this month to see if they have come down to a healthier level.

The reason for stopping GcMAF is that I firstly had run out of my current supply. It was expensive and I also wanted to see how these vaccinations will work out. I was also keen to keep my body guessing and get right stuck back in with Naltrexone. Naltrexone is approved by Prof Dalgliesh as a great anti-inflammatory so I thought now was a good time before going into hospital to really get my levels up.

I just hope that when I have the procedure in hospital by CT scan that everything inside looks ok. I thankfully still feel tip top and have no symptoms.

I can’t think of anything else that I have been, should be doing or am considering. Research keeps dripping in on Google alerts and I am ever hopeful for something to radically change the game. It can’t come quick enough for me and my friends.

 

 

 

A blog from the airplane on my way home….

It’s been an excessive six days and five nights. Excessive in so many ways. Indulging in foods I don’t ordinarily eat, far too much alcohol, lots of late nights, an excess of laughter, fun, dancing, making new friends, and an abundance of love and positive emotions.
Ibiza is hedonistic and not the sort of place you would think someone like me would go whilst trying to stay well and healthy. But it is one of my rituals now. Six years ago we decided to go to the Es Vive hotel and now they are like family. Pete and I love the staff there, many of which are such good friends. We seem to make such lifelong friends there and this year we went to surprise some of those friends on their honeymoon.
I always leave feeling like I am ready to come home. This year is no different but I do always feel so sad about leaving. A year is a long time to wait for our next visit and I am not sure my body could handle two visits in one year! This time though I felt really emotional (probably spurred on by my tearful friends) It was a feeling of will I ever see them again?
Maybe I am over tired (quite likely) and had too much alcohol (highly likely) but I did feel incredibly choked. We all did. Boys and all…. Maybe we are all just getting soft in our old age. Or maybe the Irish are just more sensitive than us English folk..but whatever it was my eyes are still damp from tears.
Saying goodbye gets harder. Also the reality that the bubble I have just lived in for the last six days is about to burst and I remember there is a job to do; a full time job with many hours over time involving me, Pete and just about everyone who knows me. I have to focus, plan and have the end goal in sight. It requires a steely determination and a mind that will never stop till the job is done.
But whilst I sit here on this plane I smile at how much fun I have just had. I have laughed till my sides hurt and my cheeks ached. I danced to my favourite tunes in the sun surrounded with the most loving, happy people. That’s something that will keep me going for months, years even. I will never forget how contented I have felt and carefree.
CanSer never leaves my thoughts but it was only in the corner of my mind. It’s time to make my body clean, fight with all my might and be strong and healthy as everyone says I look.