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Let's get through today so the staycation can begin!

by Claire12. June 2014 16:38

 

Today is glorious! I started my day meditating in the garden... Total bliss...

                                             

I had an email yesterday from the payment office at St George’s hospital where I will be having ablation. They want me to pay before I arrive. I called this morning and paid the £1191 for the procedure including one night’s stay. It’s a bit like booking a hotel! Then it just dawned on me that they have asked me to call the morning before I am due in to see if I should go in the night before. The cost of an extra night is £468! I am thinking that I may need to stay after the procedure if I get a pneumothorax, but paying for the night before?! Hmmmmm.

Today has been manic! In a good way. I am booked with clients but the phone hasn’t stopped beeping and ringing. I am having so many new leads and I can’t think why? Usually the Universe deals me what I can handle and I am guessing that maybe this is a sign that things are going to be good for the future. To be honest I have been a bit bemused by it. I am reluctant to book people in the next few weeks after my procedure as I wouldn’t want to mess them around and have to cancel. Still this is all good and I certainly need the money to pay for extra nights in a hospital! Bizarre....

I was sent a few really interesting links today that I want to share. The first is on artemesinin, better known as an anti malaria drug and a natural herb called wormwood. It is very successful in stopping canSer. I have been taking this since Dr Hembry recommended it to me in February.

Here is the article;  

http://themindunleashed.org/2013/12/little-known-chinese-herb-kills-98-cancer-cells-16-hours.html

Soon I will blog exactly what I take daily and why and also other daily rituals I do to keep well. I want other canSer survivors to benefit and be and stay well.

The other article has just been sent to me by another good friend. It seems really promising for all who have curable canSer. A pill which boosts the body’s natural defences could help fight off all cancers and stop them ever returning, scientists believe.

 So read on!

http://www.telegraph.co.uk/science/science-news/10893387/Cancer-pill-fights-disease-and-gives-lifelong-protection.html

 

I am little bit excited to finish work today because it’s my birthday this weekend and tomorrow my gorgeous hubby and I are going for a little ‘staycation’ in Cornwall. The weather is forecast to be sunny and warm and I am going to indulge in some treatments for myself and I just want to see the beauty of what England and the south west coast has to offer...Eek!

Technically as of tonight my birthday weekend starts here! Yay! Anyone that knows me knows I like to have a Mardi Gras of birthday celebrations. I’m not greedy I just like being spoilt! Ha ha...Just a few more clients then I can pack.

Ciao for now! X

 

 

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Making Bravo Probiotic...have I done it right?

by Claire11. June 2014 14:55

 

I recently received the order I placed for GcMAF Bravo probiotic kit. I have been storing it in the fridge as instructed until two days ago when I followed the simple instruction book and went through the process of making and fermenting the probiotics. It is currently sitting in a bowl in the kitchen. I decided to use whole goat’s milk, which on the instructions it said i could do if I didn’t want to use cow’s milk. I have been gently prodding the bowl on the outside and as we approach 48 hours, which in the booklet, it says it should be set and ready to go into the fridge. I fear that it still has far too much movement... Oh no... Have I done something wrong? I couldn’t have, it was so simple. Not even I could get it wrong. Well once we arrive at 48 hours I will be dividing it into 100 ml bowls and storing in the fridge. I have everything crossed its right...

                               

                                       Bravo Probiotic Easy Starter Kit

                          
                  Fermenting the milk with the ingredients from the kit... waiting 48 hours.

 I’ll let you know how it turns out.

I’m quite excited to start eating it. I really think gut health is of huge importance and I am keen to ensure I can get as much help as possible in making my immune system stronger and hopefully correcting it to help kill the canSer.

I though this week was going to be a little less busy. In my mind I had planned on reading and drawing and so on but then I checked my diary and realised I had booked it out with clients! Ha ha! I don’t mind. I love my work and I could do with the money. (Not for spending on me... honest J)

I have today been emailing Prof Dalgliesh and asking if it’s ok to have my next IMM101 vaccination since the injection sites are far less inflamed and seem to be finally healing. My worry is that should I wait until after going into hospital for the ablation procedure?

I got a reply and was told as long as they are not oozing then going before is fine. If they are oozing then Prof Dalgliesh will check them out whilst I am at St George’s next week and decide from there.

OK, well I will call the London Clinic and book myself to go next Wednesday. The day before... I think.

Like I said my arm is finally not giving me any trouble. The injection sites look smaller and are definitely not oozing at night. My concern is that they will be triggered off again when I have another shot. And the last thing I need is for them to get infected in hospital. I have concerns about coming home with more than I went in there with! I guess it’s a judgment call I will have to make. It has been a month since my last one and I feel that I should keep the immunity doing something seeing as I am not having any other treatment.

Today I am feeling all a bit uneasy. I just think some days are like that and I start doubting myself. I feel better when I am immersed into things. I have a client arriving any minute for a facial so that will be lovely for me too, lots of frankincense oil to calm me down... Ahhh. I feel better already....

 

 X

                                             

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Another good woman....

by Claire9. June 2014 16:46
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...

                   

Tags: , ,

Triple Negative

An update on my treatment...

by Claire5. June 2014 18:13

 

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... Laughing 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.

 

 

 

 

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Triple Negative

A blog from the airplane on my way home....

by Claire4. June 2014 18:25

 

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.

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Triple Negative

Oo this is a tricky one...

by Claire27. May 2014 17:58

 

Ah, the bank holiday weekend wasn’t bad at all, especially the one day the sun came out. The garden was our retreat and after much work we sat on our decking and took it all in. We love the sun. Sadly it has gone again but we will take it when we can.

Pete spent quite a lot of time yesterday after work (despite it being a Bank holiday) reading about the vaccination trial I am on. He found some really interesting information about how the heat killed mycobacterium has been around for a very long time. Read this excerpt;

‘In the late 1800's Dr Coley noticed that patients who got an infection after surgery had a better prognosis. He created infections known as Coley Toxins. Although he had success this became overshadowed by Chemotherapy. (Over 100 years ago)!

The ability of this type of infectious vaccine to create immune response was first shown with BCG that protects against tuberculosis and is also still used today in the treatment of lung cancer and melanoma.

Mycobacterium vaccae was used on the same principle to treat leprosy and TB. Unexpectedly this also showed improvements in patients suffering cancer. This led to the development of: IMM-101 or Mycobacterium Obuense. M. Obuense has been heat killed so it is not infectious but still produces the desired immune response.

It is proven that cancers grow due to a deficiency in immune response and IMM-101 has been shown to encourage the body's immune response and current clinical trials are being undertaken to investigate how effective this response is.’

So because chemo came along someone decided to put it on the back burner and forget all about it!

Why am I not surprised?

The vaccination sites on my arm have been ‘interesting’ this weekend. They have been pusy, yucky, growing, and painful. The one that I had first seems to have reactivated and is also giving out lots of gross stuff. Pete has been brilliant cleaning it with antiseptic wipes and dressing it daily. I try to leave it to air as much as possible but need to avoid getting them infected. I don’t think I will be ready for my next week next week. There is too much stimulation. Of course this activity does show stimulation of the immunity.  Pete read up online and he found another canSer survivor who was having the same treatment a few years ago. She too had the same response and was advised that it is good. OK I’ll take that.

 

I had a pranic healing session today and as usual it was very relaxing. In fact so relaxing I dribbled. Bearing in mind I sat up throughout! Pahaha! I was slightly embarrassed and had no idea there was that much saliva! It even left a dribble mark on my top...Shameful...

 

I’ve been thinking today, uh-oh... that’s never a good thing! I have been trying to work out what would I do if I didn’t have canSer? I have been trying to visualise living my life as I want it to be. That’s what I have been advised and I completely understand that you need to project where you want to be because your thoughts become your every cell and the mind can’t tell what’s real and what’s not. The problem is that when you have been living a certain way for so long, and for me it’s nearly four years, how do you switch that off?

Most canSer survivors will tell you that every twinge or ache and pain immediately puts the fear of God into them.  In a way having canSer and knowing where it is makes you feel more secure. You can kind of contain it. I would much rather not have it, believe me, but this is what the mind does to you.

Some people like being ill for all the attention. I am not one of them. I would gladly let all this pass but then what would my life be like? What would I be thinking about and focussing on?

We are all told not to focus on material things, that they do not give happiness. I know that love is the answer and I guess for most they have families to invest all their time and effort into. Women of my age generally have plenty of unconditional love all around them from their children. I guess I would try for a baby if I didn’t have canSer but I think I would have a fear of canSer returning. There I go again, not letting go. This is a tricky one.

This all came about because Pete asked what is the point of life? He too struggles with it. It seems so pointless when the love of your life will at some point die. one of us will be left behind. Now or in thirt years. I suppose the real question is what is the meaning of life? To me....

I have been thinking long and hard and I always put things together such as working more hours in a trade I love. But surely there has to come some positives out of this ordeal. I don’t want kudos or to be patted on the back and told how inspirational I am. I am happy to blend into the background. I think for me making Pete happy is my top priority. He needs oodles of love and I am the girl for that job. I’d like more responsibility so if I cannot have a baby then a dog would suffice. I think I’d like to volunteer my time and energy but I am not clear on how I would do that yet.

I feel that I have a duty to help others. There must be something I can do to give my life purpose, to give it more meaning.  I intend on my life being a long one, but I think I should live by my motto and that’s to ‘keep it simple’. I am going to keep on pondering on this one and will let you know if anything arises. Life after canSer feels like a world away at times but yet so close. More than anything I want Pete not to have to worry about me every second of every day. Despite knowing that worrying does no good, how does one switch it off?

For anyone that’s worried, I am not feeling sad. I am just asking the question that we all should be asking....What is the meaning of your life?

I'll leave you all with that thought....

Light and Love. XX

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Triple Negative

Cheeky midweeky...

by Claire22. May 2014 15:56

 

I had a visit to my local hospital Tuesday to see my oncologist Professor Harris. It has been months since I saw him and apart from emails regarding treatment options we hadn’t had any communication. It was good to see him. He seemed pretty happy. He said that he had received a very nice letter from Professor Dalgliesh. They seem to really like getting letters from each other. It strokes their egos. I think it’s great because I get good service, as it were.

We discussed my current treatment plan and he said it hopefully the other lesions will go. He said there is no point me going on chemo until we know what the ablation and immunotherapy do. I am booked to see him for an update in July and I think I will also ask for a ct scan then to see what is happening on the inside. Fingers crossed the immunotherapy is doing its thang! I had no intention of going on chemo yet (if ever).

What I do know is that the immunotherapy jab I had last Friday is huge and very yucky looking. It’s sore and nasty looking. You can see for yourself in the picture. It’ll all be worth it if it’s working. It is clearly doing something!

                                             

 

Prof Harris said I have the biggest file of all his patients, especially as they are not treating me... ha ha! He seemed so very pleased and bright. He’s cool in my books.

 

I had an email from Dr Nesselhuts clinic advising me that I need to contact RGCC who made the vaccine for the EBV and to ask for it to be reissued to my home address or to the clinic for my next visit. I replied and told them they need to contact RGCC and request it. Why would I do it? They say that it is the manufacturers fault but I still feel they have to request it. Hopefully when I go in July the vaccine will be there...

 

Yesterday I had acupuncture and auricular therapy. We have been discussing the fact the lesions that are growing are mainly in my right side. My therapist says it could be the liver is stagnant. He loaded me full of needles including in my ear and I lay there for about half an hour. After I felt all buzzy and stimulated. He is such a nice guy...

Last night Pete and I had a lovely meal and overnight stay at a local hotel. We decided having 'cheeky midweeky’s' as I call them, are good for the soul and a nice way to keep things fresh and exciting. Then this morning we had a champagne breakfast before we got on with our days. So decadent but lovely...

 

                                               

 

My friends have posted on FB today that they are going to be climbing Ben Nevis this weekend in preparation for the Three Peak Challenge they are going to do for my chosen charities later this year.

Well I hope the weather improves as it has been tipping it down here today! Has the summer gone already? I only just started wearing my flip flops...

 Here is their donating page for anyone that wants to support such a courageous attempt;

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=Kittysclimbers&isTeam=true

 

 

 

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Triple Negative

Ah, what a weekend...

by Claire19. May 2014 14:55

 

This weekend was brilliant. Brilliant weather, great mood, fantastic experiences and most of full of love.

I met with friends on Saturday and had a girly lunch at Blenheim Palace. Not your every day destination but truly fun, then I was picked up by my man and taken to our friends house where we had a lazy afternoon and evening with yet more friends having a huge BBQ! Highly impressive. All this eating is amounting to weight gain I hasten to add.

We got home early yesterday and had a day of sunning ourselves planned in the back garden but as ever we cannot sit for five minutes and before I knew it I was painting and Pete was mowing the lawn. By the afternoon we sat back with huge satisfaction that the garden looks great. We then had the pleasure of Pete's sister joining us for a brief catch up. I think for once both Pete and I can safely say we had enough sunshine. For that day anyway! I am little pink today.

The vaccination that I had on Friday has certainly grown in size and resembles the last one. It looks pretty angry so I think we can safely say it has responded well again.

Today I have used the nebuliser with GcMAF. I currently feel great I just hope my insides resemble that feeling.

I am still waiting for a response from the clinic in Germany regarding the EBV vaccination. They have said they need to speak to the doctors before they can get back to me. Well go speak to them?!

I feel all over the place today. I am working and trying to plan future trips as well thinking about cleaning the house! Ha ha...

 

                                                

Tags:

Triple Negative

Vaccinations, London twice and now something else to try get resolved...

by Claire16. May 2014 19:31

 

It’s been a busy couple of days with hospital appointments. I got up at the crack of sparrows and drove to south west London to where I will be having ablation later in June. I met with a consultant (not the one that will be performing the procedure) who was very nice and seemed very kind and caring. He gave me the low down on the treatment and explained that the microwave (not radiofrequency as I was told previously) ablation would be done with me lying face down. They will gain access with needles between the ribs or thereabouts. They will make sure they get a clear margin all the way. He explained that ablation can be performed more than one. He said that by thermally ablating two of the lesions can encourage the others to die off too. Wow.... I hope so.

He explained that I would get a pneumothorax and that the lung will partially collapse but as I am a healthy individual it should sort itself out pretty quickly and he doesn’t anticipate me being there more than two nights. Fingers crossed eh?

I was then directed to the private health office where I was told to take a piece of paper with notes on. There the lovely ladies looked up the procedure on their computers and advised me of the cost; £1191 which includes one night and for every extra night a cost of £468. Then I need to find out the consultants costs... What? I hadn’t been told that but I am not overly surprised. I guess I need to email the consultant then. Still it’s cheaper than going to Germany so far.

I hopped in the car feeling all pleased with myself for having driven my way through horrendous M25 traffic and realised I had the rest of the day to get things done.  Getting up early is pretty cool! I spent the rest of the organising and working but still managed to get some meditation done in the back garden catching a few cheeky rays. I love the sun.

Today I had to hop on the train and head up to London again, this time central London. I made my way to the London Clinic for the second vaccination of IMM101. I arrived early and the nurse said that the mark where my last vaccine was looked really good and showed that I have responded well. The trials doctor then came along and asked me how I felt and then examined my lymph node regions; under the arms and round the collar. All seems fine so he gave the go ahead for the second injection. So far this one hasn’t come up quite as red or raised.  Oo I hope it’s still responding well.

Whilst checking my mail on the train I got an email from Dr Nesselhut's clinic stating the ‘antisense’ vaccine I was waiting for on Tuesday didn’t end up arriving until 5.30pm. It was fortunate that we decided not to wait. We would have missed our flights. The email then said the manufacturers have stated that it can be kept frozen for three weeks and for this duration it will remain stable. Can I go back within the next three weeks for it to be administered? WHAT?

I replied and asked them if they were joking and that I was informed on the day it could wait until I return in July. I have insisted they speak to the Dr Nesselhut and get back to me with a solution. Either it can be done again, they come to me or they send it over to me and I get someone else to administer it. I am still waiting for a reply. That really takes the biscuit. I don’t want to die and I will do anything for my health but would I be mad to simply hop on another flight, drive all the way from Hannover to Duderstadt have an injection and then drive all the way back to the airport and get on a flight back to the UK? It sounds feasible if I had the funds and time, which if it came to life or death I guess I have. If I could go on my own then maybe I would consider so it doesn’t cause such an upheaval for Pete and work but not until they think about a better solution. I don’t feel overly stressed at this point but I am getting used to their f*** ups! To be fair it wasn’t Dr Nesselhut or RGCC, it was the courier company, but part of me wonders why didn’t the vaccine arrive when they requested it be returned on the 12th not the 13th?

There has to be a solution. I have no idea what effect this vaccine will have on me but I do feel quite excited by the fact that if Epstein Barr Virus is cured inside me then maybe my immune system might start working properly. EBV is proven to cause other canSers, not breast canSer but who knows what is happening inside of me?  It never runs smoothly... We will figure it out.

The weekend is crammed with fun stuff and the weather is looking good. Whilst Bear is out I am pampering and preening myself... Now for a cheeky glass of something cold.

Have a great weekend all!

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Triple Negative

Please let this thing end...

by Claire14. May 2014 16:08

I'm sitting in my garden for ten minutes in this beautiful sunshine before I have to get ready for my next client.

We got home late last night but the flight was great with few people on it and the steward took a shine to us and gave us extra drinks. ( who can resist our puppy dog eyes?!)

The afternoon hadn't panned out as it ought to have at Dr Nesselhuts. We left late because we were waiting around. I was due to have my usual vaccine as well as an 'antisense' vaccine for Epstein Barr virus. Sadly though the courier didn't arrive. He left Berlin at 8am and at 4.45pm he still hadn't arrived and no one at the depot knew where he was. We waited for as long as possible and even though we left and saw a DHL van we turned back in the hope it was my vaccine. But no...

A little annoying to say the least. They are going to keep the vaccine frozen until my next visit which we have booked for July. 

I had results of blood analysis too yesterday. I was surprised to see that my natural killer cells are really low and my suppressor cells are really high. It should be the other way around. This puzzles me. I eat well and consciously try to take supplements to boost my immunity. Clearly they are not working or I am not taking the right things. Dr Nesselhut says to take coriolus otherwise known as turkey tail mushroom. I already do. How much? A 1000mg per day. Dr Nesselhut tilted his head with agreement on the amount. I guess I'll have to try harder.

Pete in his usual way said not to worry and gave me an explanation but I have to be honest I am finding it harder to remember everything. I just know I have to keep doing what I am doing and then some. 

 

This morning Pete woke me by calling on his way to work after the gym. He was is such a great mood and told me to look out of the window and see our rhododendron has finally flowered. He is so positive and full of love. I couldn't be more proud of him. He told me that if I am tired today to rest and catch up with stuff later.

 I have to admit I feel wrecked and a little odd. My body is vibrating and I definitely feel a change in my energy. It's probably the vaccines and treatment I have had. I feel like I have been exercising. Well I have but this feels different. I'm going to try to be good to myself...

 

I love being at home but today has been a whirlwind. I had my usual routine start to the day and then have been emailing my oncologists secretary all morning. I am off to London very early tomorrow to see the radiologist specialist who will be performing the ablation surgery in June. He wanted a copy of my last ct scan. The secretary has been brilliant organising it and apparently it was due to arrive today at her office then I could collect whilst at the hospital having my blood test. Nope... Wasn't to be. So I won't take no for an answer. I went to the radiology department and showed them the emails between myself and the secretary and they did me a copy there and then. Sheer bloody mindedness will get you everywhere....

I then get home to find an email saying that the ct scan has been emailed to the specialist... Ha ha! Oh well all bases covered.

 

I have had a good response to the vaccines yesterday as well as the interleukin 2 jab. My arm is red and raised and really quite itchy. It normally goes red but subsides within twelve hours. This is new. The spot where the jab for the immunotherapy by Dalgliesh looks better but is also itchy, a bit like it is healing itchy.

 

I sat on the flight last night and we watched in wonder at the sun setting whilst we were above the clouds. I felt really serene.. But then thoughts of all the people we keep seeing in Duderstadt from all over the way world came into my mind. There was a guy on our flight who we had seen at our hotel and at the clinic. He clearly had a brain tumour. It's unbelievable the amount of nationalities we are seeing there now; Asian, Australian, New Zealand, Chinese, Arabic, Portuguese, Russian and more.

It's so weird because when I first got diagnosed I remember thinking why me? Out of all these people why me? But now I feel crowded, almost claustrophobic. It's like an epidemic and everyone is getting infected by a disease that is catching (but of course it isn't) and there are now only a few who are not ill. It's a really strange feeling.

When will this ever stop? Or won't it. 

 

Just heard the sad news that Stephen Sutton who has raised so many millions for charity has today died too at 19 years old.

 

Please let this thing end.... 

 

 

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