I feel all.. floopy.

Wednesday morning I headed down to Tooting to St Georges again, this time not only to collect interleukin 2 injections but also to see Professor Dalgliesh. I left myself plenty of time but unfortunately my train was cancelled. I was too worried though. I got to the hospital half hour late and I expected to wait like I would at the Churchill in oxford. They are always running late there but I walked in to an empty waiting room! What a novelty. I was seen by Nneka who provided me with the injections and then Prof wanted to see me… for all of about twenty seconds. He asked if I had any symptoms, No. I chatted about the lumps in my tummy that the il2 injections leave. Apparently that is normal but if I was to let the injection warm up to body temperature before injecting then the lumps wouldn’t occur. Oh, now they tell me!

So as quick as I arrived, I then left. Pete had messaged me earlier to say that he was having meetings in London that afternoon so I hopped on the tube and went over to Knightsbridge to meet him after. It was a great afternoon mooching around the shops trying not to buy anything and then I had a message from a friend saying her partner was in the vicinity and he was on his way to meet me!  Don’t you just love spontaneous events? We sat in the sun having a few cheeky Pimms and lemonades whilst we waited for Pete. Then along he came and afternoon went into evening. It was just lovely. I had a really good day.

I did my injection in the car on the way home and by the time I got to bed it was nearly midnight. It was worth staying up late for though. Unfortunately the injection gave the same side effects as before. I had a fever that woke me up about four hours later. It’s hard to describe because not only do I feel hot I feel like there is a hole in my back; a pain deep inside but towards the back of me. I imagine a hole in my spirit, my chakras. It’s so weird. I can’t lie still and I feel utterly awful. I popped a few paracetemol as usual but they didn’t have any effect.

Needless to say yesterday wasn’t such a good day. I felt just rubbish. I felt drained, sickly and just plain achy. I walked so much on Wednesday my legs ached (but on my UP app it said I had walked 22,000 steps! Yay!) And I just couldn’t snap out of it. I had a day of clients too until 7.30pm. The good thing though, was working did take my mind off it and I didn’t wallow in self pity but the end of the day couldn’t come quick enough.

I cooked us an omelette for tea. Something nice and light and even that I couldn’t stomach. I am such a moaner. All day I felt teary and just absorbed in my own self pity.

It probably doesn’t help not knowing what my scan results are. I am not sure why I let them define me? It makes no difference really what the results are. All they do is decide what my next step is. But I can’t help but wish for an exceptional outcome. Am I being too unrealistic to expect that?

With all these aches, pains and twinges part of me thinks it’s great because my body is responding to the injections and vaccines. The other part of me thinks that there is something profoundly wrong. But my little body is going through quite a lot. I mustn’t be too hard on myself.

I do feel though the last month or so I haven’t been on an even kill. I can decide if I have had more off days than good ones. I miss feeling awesome all the time. Most days I have plenty of energy and always exercise. Today was different. I simply couldn’t muster up the energy. Last night I did sleep better, I didn’t take any paracetemol after having my il2 injection and I felt a tiny bit better. I did have a hot, sweaty night again and I did feel achy and odd. Thankfully not like I had a hole in my back.  It’s hard to describe. At the moment I feel my spirit is off. I know I haven’t been having as many treatments from other therapists but I am not sure they could help.  I feel all, like Phoebe from Friends would say floopy. I am in need of being in balance and I don’t know what will do that.

Update on my arm: The vaccination I had last Thursday has now erupted and looks like a volcano. It is sore and pusy. It’s so unattractive but in the scheme of things, who cares, right?

On the plus side, Pete is being an absolute diamond as always. Every morning he brings me a hot lemon drink and tucks me up whilst he leaves for the gym or work. An hour later he calls to see how I am. I couldn’t ask for a better way to start the day. I am really enjoying my morning rituals. I even love the green juices now. I always knew they were beneficial but having vegetable juices is quite hard to stomach. I don’t know what has changed but I really love them.

My life is brilliant. I just wish I could sleep soundly and feel replenished in the mornings. I want to be full of energy and have a zest for life.

I am still waiting for scan results. Despite the secretary saying she would email them, the radiologists haven’t actually done the report yet. Really? Well if by Tuesday they haven’t been done I won’t be going to see Professor Harris. I know they will be ready then and I just can’t stand sitting in the clinic waiting room dreading what he will say.

I know this is playing on my mind. As I said it really doesn’t matter what they say but I so want good news. I need to shift this living every three months. It isn’t good for my health. Or Pete’s.

When I’m feeling tired and emotional I just wish I could worry about other things like normal people do, like where to go on holiday , or having to save up for home improvements. Living with bloody canSer gets so boring. To be honest I wouldn’t mind, thank you very much, if I could just be told it was all over and then I could focus on helping other people. But… that’s just life. My life.

Blah, blah, blah… I bored of moaning. I have so much to be thankful. This morning I opened the door to receive a package. I opened it up and it was gift bought for me by Pete. It’s a stylus pencil for the app I use to make my drawings. We have been waiting for months for it to arrive in the UK. Yay! I am so chuffed. Also i have a man here right now. Sounds odd right? J He is measuring up and designing my kitchen. I have wanted a new kitchen for years and we decided to at least take the first step and get someone in to design and price it. Then we just need to see if we can afford to have it done. Gulp. Anyway, these are all things to look forward to.

This weekend we have lots to look forward to, seeing friends, laughing and joking. Just what we need…..Happiness….

Mind body healing… The answer to healing all diseases?

I have just got back from the London Clinic where I had my fourth IMM101 vaccination. The other three vaccination sites have finally started to properly heal so the doctors were happy to proceed with the next one. They decided though that half the full dose would be enough. As always it immediately looked quite raised then it disappeared. A few hours on and it has spread to quite a yellow raised lump about three times the size. It’s different every single time I have one. It’s so intriguing.

Today is the hottest day of the year and it’s so humid. We Brits aren’t used to this kind of weather and if we were we would have air conditioning! I’m sat in the garden writing this on my iPad as my sweat profusely! Too much information?

I’ve had a lot on my mind today. Before I left to catch the train I watched a lecture from the course I am studying with the Integrative Institute of Nutrition. Unlike the sound of the course it is not simply just about nutrition and helping people just lose weight and feel better. The course describes nutrition into primary foods and secondary foods. Secondary food is the food we eat, the nutrients we ingest. Primary foods include healthy relationships, a fulfilling career, a spiritual practise amongst other things. These are all areas of our life we need to work on as well as the right foods to eat or the diet to have to heal ailments.

The lecture this morning was about mind body healing, that the route of most peoples illnesses or the fact they can’t lose weight is due to something deep down that they haven’t resolved and it usually something that happened in a very early age.

The lecturer, Paul Epstein, said that even things your parents suffered, like a trauma, could have transferred onto you and that is how dis-ease occurred inside of you.

This really made me think. CanSer has always been said, not to be simply a physical disease but one of the mind. I have done lot of soul searching and working on my emotional self the past two years and have used things like the Soul Forgiveness prayer, emotional freedom technique, hypnotherapy and more and I feel like I have come on leaps and bounds and feel better than I ever did about myself but this really resonated with me.

Paul Epstein said that his father was traumatised by his time fighting in World War 2. He would scream at night and as a young child Paul could hear his screams. Somehow this transferred onto Paul and he suffered with the same trauma later in life which caused his illness.

I have always wondered what caused canSer and I have always thought it was stress. I have always been a highly strung individual and there have been points in my life that I haven’t handled as well as I could and I have dealt with regrets and sadness. But what really started this whole path in me?

What Paul said made me think of alcoholism. Now I’m not one to point fingers but the only thing that makes me feel anxious and unsettled when I think of my childhood is my dad drinking and the not knowing what he would come home like. I’ve dealt with all these emotions but have I manifested this in my own actions throughout my life? I used to party hard and say it was escapism. From what? What was I running from? Life. I didn’t marry Pete until I was 33 years old. I had always been afraid of starting a family and knowing myself as I do now, realise that I have always tried to controlled my life. I have always wanted to know what is going to happen, taking away the excitement of what life may bring.

Maybe I did that because I didn’t want the surprise of the knock on the front door of life to be smacked really hard by someone I looked up to, who should have been greeting me with a smile followed by a hug. One simple memory that is still as clear in my mind as the day it happened.

Aren’t we as individuals silly? How have things that have happened in the past moulded us and created into who we are and have built such resentment, sadness, fear, anger, you name it, to then manifest itself as a disease like, well, anything really, but for me and many others canSer?

It’s like a penny dropped. I have been acting like an alcoholic. I have been excessive in my life. I was all or nothing. I was a party girl with no responsibilities and did as much as possible not have any ties, but all the while feeling sadness, regret and wishing I could have a better life. It’s not my illness. It’s not my problem.

I have everything I want now. I have security- a home, a job, and a husband. The most important thing I have is an abundance of love. I need to let go of worrying what’s round the corner and trying to be perfect. I don’t have to cure canSer. I have to heal my soul and to do that, is being authentic and the real me.

I have wondered why I have always been highly strung and stressed. I always I thought I had no reason to be like it or why. I wondered why I was afraid to ‘grow up’ but I think I get it. I’m not going to let anyone down. I’m not weak and I don’t need to be fixed. CanSer isn’t part of me. I don’t need it to be part of my life. It’s not an excuse or a crutch. I can live without it and I can be an adult.

I have been having dreams recently about having a baby. In my late twenties and early thirties I was always scared of having a family. Was it the right thing to do? I would make excuses like, ‘Why would I want to bring a child into this world with all the bad things that are in it?’ But what I was really doing was reflecting my life’s fears. Now I know life is full of love and what I put into it is what’s reflected.

I also dreamt that I had ten God Mothers for our child. Each one helped in their own very special way. Ha ha. I like that. I can picture them all in my head. My friends who  all have their specific strengths and would perfect in their own special ways… Anyway I’m digressing.

Healing illnesses isn’t about the right medication, treatment or therapy. It’s about healing the cause. Get to the root of it and I believe you over half way there….

Epiphany over…. Time for tea. Xx

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.

 

 

 

Ah, what a weekend…

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…

 

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

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!

Disturbing the peace…

I spent quite a few hours on Thursday night trying to get to sleep. It wasn’t jet lag keeping me awake but thinking that if only I could have some good news on Friday. The good news for me would be confirmation of ablation and vaccination trail being booked.

I really tried to put as much energy into thinking the Universe would grant me some positive results.

Friday I even took it a bit further in trying to let the Universe give me good news by calling Dr Grubnic, the specialist radiologist, at St George’s hospital who I am waiting to contact me. It’s the only details I kind find for her. I even called and spoke to her secretary, who I would like to add is another very miserable individual. They don’t know how lucky they are and also who they are dealing with. Where is their compassion? Well that’s another issue… but for now I was met with a dead end. Dr Grubnic’s secretary simply said if it’s a private matter then I will just have to wait for her to contact me. I emailed her hopefully getting my message through and I also emailed her secretary hoping that he would perhaps help me by passing on the message to her. Well so far nothing.

I have emailed, called and left messages with Prof Dalgliesh and his secretary and still nothing…

Blimey if  customers who paid for a service were being made to wait like this I am sure they would be going mad at the lack of support and communications. Oh wait I am paying for it! I have felt really uptight about it. I know it is taking my peace away and I know it will happen but I can’t keep waiting.

I am meant to start vaccinations Thursday coming; surely I should have had confirmation by now? I know it’s not me being difficult and expecting too much.

It’s disturbing my happiness and actually that combined with the thought of my ct scan results you can imagine my insides are a mess. But I am the only one that deals with this. I don’t have to feel this way. It’s if I let it happen.

Thankfully I have heard from Doc Nesselhut, in fact I think their communication issue has been sorted now. I am  booked for bloods and DC therapy. I have booked hotel, flights and car hire. So that’s’ one thing ticked off.

Yesterday I used up my last GcMAF vial by inhaling it with the use of the nebuliser. It is kind of good timing if everything does fall into place with ablation and vaccines.

I have decided that in a few days I will start using naltrexone again and up my dosage to 4.5ml per day.

This weekend has been lovely… as per… I had the best sleep last night and feel completely rested. I have been to the garden centre and done normal housey things… now we are watching all important rugby on TV. It’s the normal things that make me happy. I hope it continues this way…

Treatment number 4- Day one

We arrived in Duderstadt around lunchtime after a lazy weekend in Cologne. The weather is getting colder and feels like snow is on its’ way. Before my appointment at Dr Nesselhuts’ clinic we wandered around the little boutique stores and purchased our first Christmas presents. I’ve made a decision not to feel so pressured in the whole Christmas prep this year and to ‘go with flow’. It’s actually really satisfying buying things without a list and with love rather out of a need and urgency. I like it…..

Cindy treated me today. I find it hard to stay awake having the heat and air treatment these days but I did notice the intensity of the heat being increased every 15 minutes. It doesn’t actually feel hot but my body sort of vibrates and pulses in my gums etc. it’s not uncomfortable at all. The NDV injection on the other hand does! Yowzer! If I wasn’t awake before it, I am after!

I asked Cindy what happens after my last vaccination tomorrow. She said that if my scan comes back saying the canSer is stable then maybe in 3-6 months I may go back for another vaccination to give my immune system a boost. She said Dr Nesselhut would advise.

Back to our ‘home from home’ for a hearty German meal then an early night. I’m not sleeping well lately. I’m hot and sweaty (nice!) and having vivid dreams. A scary thought went through my mind that maybe it’s symptoms of the menopause bought on due to the chemo…I hope not. The thought of really having no chance of being a mum due to the menopause does put a bit of a downer on it. Of course it’s unlikely I can have a baby but who knows?!

 

Anyway one last thing- sad as it is we had English tv in Cologne. We again sadly watched the X Factor last night… What a complete farce!!!!! I’ll say no more on the matter.

Night!