Met with another Prof..

I am having trouble finding time at the moment. I feel hugely overwhelmed with things to do and things I think I should be doing…

Mum stayed with me last week whilst Pete was away but unfortunately she was ill for most of the week.

At the end of the week Pete and I went to London to see yet another well known Prof. This time it was Professor Stebbing.

We sat patiently in the waiting room when Prof Stebbing walked in the front door and said hi to a patient of his. I knew who he was as I had googled him but was a little surprised as he stared at me, almost trying to figure out who I was. It was like he knew me.

We had the pleasure of meeting him and his colleague also from the Imperial College too. He fired a lot of questions at me and a-hemed as if he already knew the answers. Maybe he had googled me?! Ha-ha!

I found him very friendly and sympathetic. I must admit I was hoping for an amazing meeting like my friend had experienced but sadly the appointment was over in half hour when we were asked if we wanted to talk to his colleague about genetic testing.

During our meeting with the Prof he did discuss immunotherapy and his interest in a combination of drugs and immunotherapy and there are some trials, one of which I may be eligible for.

Whilst there, Prof Stebbing said what a great guy my oncologist Prof Harris is but suggested that instead of having Eribulin as my next chemo of choice to opt for Gemcetibine combined with Carboplatin. He dictated a letter to be sent to Prof Harris making this suggestion.

Taken to another room I spoke with his colleague who wowed us with a potential genetic mapping process and how we would be able to discover the mutations in my tumour and see what genes are affected. This would mean treatment could be specifically catered for my individual genetic mapping. This could potentially open up many doors. Apparently it would only take three weeks for this process but first I would need a biopsy. I was under the impression I couldn’t have a biopsy but was informed that I could. So I have left a copy of my ct scan for a radiologist to take a look at and to confirm if this is the case.

Then came the news of how much genetic testing would cost. It would be sent to an American company and the cost would 7500euros.  Oh….

So I left feeling like I had more questions than answers. But I always do. I did feel relieved to have met such a nice oncologist but felt disappointed he didn’t have more time. I wanted to pick his brain on everything like Prof Vogls treatment TACE and so on. But then I don’t suppose he would comment much on things they don’t know much about.

So where am I up to?

I have a copy of my ct scan with a radiologist who is going to be telling me whether I can have radiofrequency ablation and a biopsy.

I am waiting to hear back from the ‘board’ to know if I am accepted on an immunotherapy trial with Prof Dalgliesh.

Once I know about the biopsy, this will determine whether I am going to go for SmartGen genetic testing.

All the while I have chemotherapy booked for the end of April. Should I decide to proceed with that, I am now considering Gemcetibine and Carboplatin as recommended by Prof Stebbing. He said that I won’t lose my hair with this combination and can always have Eribulin at a later date.

Zometa and Il2 are still being recommended but at this point in time I am unsure as to where I can get this as Prof Harris it isn’t available on the NHS for triple negative breast cancer.

I am feeling uneasy again. It’s so ironic. I said I didn’t want chemo for a few months and I got my wish. But I am filled with dread as to what my next scan will say.

Pete and I drew a chart yesterday of all the potential treatments available to me. I should be feeling quite happy as I have lots of options available and this could see me through at least another few years all going well. Pete said not to expect the next scan to be good but be assured that the rest of my body has had time to get stronger and be ready to fight again.

I guess I am just worrying and frustrated as I want to know whether or not I have the green light for the next few treatments. Suspense is not good for me…..

But I have to remember I feel well… I look well and I don’t want to miss this time. What I really want is for this all to go away… Ho hum.

 

The weekend flew by as usual. Yesterday was lovely working in the garden and I was nursing a bit of a hangover. I think I let off a bit too much steam as I drank way too much on Saturday at my friends hen do… but never mind.

We snuggled up in front of the chiminea last night enjoying our extra hour since the clocks changed.

This week has lots to do and I hope that good news is coming…

 

Where’s the week gone?

I can’t actually believe it has been a week since I last blogged. I haven’t been away in fact I have been home the whole time. But Pete has been away and I guess I have just tried to keep myself as busy as possible. I have been busily making sure I have eaten completely veggie diet and have had fun making my own food from scratch every day. Pete usually does the creating in the kitchen. I present him with ingredients, Ready Steady Cook style and he cracks on with making a wonderful dish. I have to say I have really enjoyed making simple, fresh nutrient dense food.

I have also kept myself busy with work, homework and setting up a new website for the health coaching side of my business. As well as this I have been practising my coaching skills on friends and I am pleasantly surprised with how many are actually interested in my services. What is more surprising is how much I know! I didn’t think I would be able to counsel and advise but it turns out I know more than I think.

The nights are the hardest without the Bear but I have had plenty of company. At the weekend the only night on my own was spent in front of the TV mainly crying at Sport Relief, a very worthwhile cause. Then every evening since then I have been accompanied by friends or my mum.

With Mothers Day just round the corner I was pleased when Mum said she would stay with me for a week. I had lots planned in between working (for mum to do and help me with!) but she has been ill since she arrived. So I have been the dutiful daughter doing my best at looking after her. This is a novelty as I am so used to people looking after me!

Thankfully my Bear arrived home last night and what a relief to finally be back in his safe warm arms.

Not much has happened on the treatment front this week. I am patiently waiting to hear about possible treatment with Prof Dalgliesh. I did have a moment yesterday when having sent a copy of my last ct scan to Prof D’s PA special delivery to arrive by 1pm; she informed she hadn’t recieved it despite the tracking system stating it was signed for. It was found eventually and I have been informed it is now in the hands of a very good radiologist who will let me know if I can have ablation.

I am still taking GcMAF but I am now down to my final vial. I think I will buy more and carry on until I can have treatment. I have had reports from fellow attendees to the GcMAF clinic in Switzerland that things are looking good for them. This is good and I need to stay hopeful.

I have as instructed cancelled all appointments for next week in Germany… reluctantly I might add. I like having the safety net of physically doing something. But I must patient… (It’s like a mantra!)

I had a call yesterday from Birmingham hospital. They were in receipt of my vitamin d test and it is their duty of care to contact patients when they are concerned about the results. The concern is my vitamin d result shows at 392.9 nmol/L. Apparently anything over 220 nmol/L is too much. My previous one over a year ago was at 189nmol/L. OK So I guess I need to make changes. They advised me to stop taking my vitamin d supplements and get a full blood test from the doctor.

I was a little surprised. I really didn’t expect supplements to have that much of an effect on the body considering they are such small amounts being consumed. It’s good to know they are doing something.

I have also received a summary plan of things to start taking in response to the RGCC blood test from Dr Hembry. Things such as artemisinin in higher doses, genestein, lycopene and quercetin.

She has also suggested I may be able to have artesunate and polymannan extract administered intravenously. Dr Hembry is currently away but I will find out on her return.

Overall I have been having a great week but I am so surprised as to how busy I am. I don’t have time to breathe. I think staying home next week is a good thing but I have foolishly been booking in new clients and before I know it my diary is rammed. I am not complaining I am just surprised at the quantity of new clients I am getting.

My personal appointments are dwindling though.  I have had to cancel reflexology and acupuncture recently and pranic healing don’t have any appointments that suit my times on the next two months. I need to make sure I look after myself and I must put myself first. I would like time to read more and I HAVE to do some artwork or ipad doodles.. I guess that’s artwork!

Being a good daughter and to treat mum for mothers day I hahve today done her a facial and painted her toenails.. she is currently asleep in my treatment room!

I still have plenty of work left to do today but it’s good to be busy. I am looking forward to a soak in the tub though… I feel like I need it!

Tomorrow is an exciting day… (after seeing my friend and having a hair cut) Pete and I are off to London to meet Prof Stebbing. I can’t wait!

Mmm, the yummy smell of cinnamon apple crisps… I am making some right now. I’m off!

Forgiving the Soul…

Yesterday I went for my weekly pranic healing session. I know that people think I must be mad but each to their own. I get a lot from it. I suppose it is odd as I don’t have any physical therapy but I am open to believing in anything at this stage. Plus I have a friend who has the treatment and really believes the canSer he has, has reduced due to this healing work.

I take from it what I can. Les, the healer suggested I do a ‘Soul Forgiveness’ prayer and to truly imagine letting go of any resentments or conflicts that I may be harbouring. When you have canSer there are plenty of those and to be honest even when you haven’t got canSer. We all have our hang ups, but I believed I had put a lot of my ‘stuff’ away… let it go and so on. In the last 18 months I have done plenty of soul searching as I believe negative emotions need to be released so that you can truly release a disease or any illness that manifests itself in one’s body.

Les asked me last week, when I was feeling pretty delicate and emotional if there was anything that could be deep within me that I am not letting go off. And my dad popped into my head.

He had called me a few days earlier and left a voicemail. Quite normal I guess for most reading this. But for me my dad has always been a bit of a sore subject.

Being completely honest and laying all my cards on the table for the public to read (I sometimes have to remind myself that this journal of mine is there for all to see) my dad is a big drinker. He always has been throughout my whole life. Having to admit he is an alcoholic is pretty hard. Especially as he is the greatest man that ever lived. Well all dads are to their daughters when they are growing up. Being from the east end of London he is a grafter and ‘Jack of all trades’. He could build anything and regularly did our house and garden up. A truly amazing hard working individual. But this was regularly marred by his drinking habits and the person he turned into when he drank. As with any drinker they all become loud and obnoxious. I have hated seeing him like this all my life. I think mainly because you never knew what kind of mood he would be in when he got home.

Sadly my mum had enough of ‘that’ person a few years ago and decided that life without him was better for her soul. I don’t blame her.

But that didn’t stop me from wishing he would stop drinking and be the dad that I absolutely adored as a child. The thing is if he rings after 1pm I generally avoid the call. 9 times out of 10 he would have been drinking and I really cannot tolerate that person.

I told Les about how I felt about him. That my dad only tells me he loves me when he is drunk. He was never a very cuddly kind of person and it makes me cry every time he says it. I guess because it feels like he has to be drunk to tell me. That’s really sad. There has been many occasions where we have had full blown arguments whilst he has been drunk. Once when I was at a radiotherapy session, I left him decorating my treatment room. I got home to a very drunk excuse of a man. I had only been gone an hour and half. I was devastated. I went nuts. We didn’t really speak for nearly a year. I felt let down and angry. But I suppose I didn’t really consider how he felt about it all. This is no excuse though…

Les felt that I needed to work on the Soul Forgiveness prayer and picture my dad looking all dressed up and healthy and imagine making up and letting him walk away and having no feelings of anxiety when he left.

I have been doing it for a whole week, really picturing my dad and thought it was going well. I told Les that my dad had rung and left a voicemail again but I hadn’t called back. Old habits die hard I guess. Les suggested I go home and call him immediately and see how I felt.

I didn’t. I forgot actually. But last Friday I looked at my phone at 5pm and thought,’I’m going to call my dad’. I knew he would have been drinking but I didn’t feel worried.

So I called. My dad was thrilled to hear me and was overly excited. He had been drinking and was swearing like a trooper and laughing loudly but I didn’t feel any anxiety. I felt happy to hear him. He told me how his winter had been and asked how treatment was going and told me a few secrets. Bless him. Then he said the nicest things about Peter. That Pete is the best thing that has ever happened to me. (I already knew that but how nice to hear it from your dad!) He said that he couldn’t have wished for a better man to take care of his daughter. We talked for about an hour and arranged for him to visit sometime this summer. (To be honest I told him to bring his tools, I so need some work doing on the house!) He kept saying how pleased he was that I had called and that I had brightened up his day.

I have to say I felt great. I felt at peace. I understand that he must be a troubled soul and how lonely he must feel sometimes. I can’t stop him from being a drinker but I can help myself feel better about him.

I told Les yesterday all about it and he was thrilled for me. I am to continue doing the Soul Forgiveness prayer and maybe other people will pop up that I need to forgive or maybe they need to forgive me. Whichever way you look at it is a great way to make peace with yourself and allow yourself to be free.

I have felt brighter ever since I spoke to my dad. I urge everyone to give a go.

Here is the prayer.

I the soul ask for total forgiveness from any person, any being on all levels for any Pain, suffering and any sorrow that I may have caused you in this life or the past.

 

I also forgive any person any being on all levels for any pain, suffering and any sorrow that you may have caused me in this life or the Past.

We are all souls, we are all evolving I release you please release me, go in peace,

 SO BE IT! SO BE IT! SO BE IT!

Whilst saying the prayer imagine the person dressed nicely and happy and let them turn and walk away and go into the distance. Keep practising until you feel nothing when that person or situation is mentioned.

 

Light and love… I hope your soul becomes calm and happy.

X

You never know what tomorrow may bring…

The weekend was unexpectedly great. I knew we had a fun time ahead as our friends were coming to visit but sometimes it’s great to having any expectations and it turning out lovely.

It always surprises me that you never know what tomorrow may bring. The weather was gorgeous and we had plenty of time revelling in our back garden. Friends arrived and cooked us a tasty Chinese meal, then sang round the chiminea until about midnight. (Sorry neighbours!) It was so relaxing and probably one of the most memorable evenings in ages.

 

 

I had no particular plans for Sunday. Once our friends left all I thought was that it would be really nice to relax reading in the sun, hang out washing in the fresh air and take it all in. Pete had other plans and off we went to a big DIY store apparently to look at prices. We came home with a power jet wash and got to assembling it and then ‘trying’ it out. Oh my god… it is so satisfying watching each every patio slab and decking plank change from grotty black to bright natural sand and brown colour! Once I started there was no stopping me and by the end of the day I had completed the job. This had been on my list of to-dos for ages and I didn’t really ever expect to achieve especially I had no idea we would buy some decent kit to complete the job.

I felt a natural high and I can’t stop looking outside at the wonderful results… How funny that something so mundane to most seems so exciting to me!

But it all comes down to not knowing what each day brings and keeping an open mind and going with the flow.

I spoke to my friend yesterday who has been to see Professor Stebbing, a triple negative specialist in London. I have been recommended to him over a year ago but never went to see him. I recently felt the urge to get an appointment but hadn’t had any reply. As usual I thought this was just how it is as all other doctors don’t usually reply at any great pace or I get ignored completely.

Spurred on by my friend I made the decision to email him on a Sunday never expecting to get a reply. I did and his PA emailed me too. I have finally got an appointment. Yay!

I felt quite excited by it as I have been told he is very committed and caring. He believes that secondary cancer will be classed as chronic disease within two years. Well I best stay alive another two years at least then!

A delivery of books arrived at the weekend also and I started reading about having a charmed life. It’s a bit like, once you start looking for the positives and the little miracles, they start coming all the time. I guess that kind of happened this weekend in more ways than one. The more you look for them there they are. It has really perked me up and I feel like I am living much more in the present. I am back to feeling like I have drive and less afraid.

However, I still feel a bit unsure about what to do with regards to treatment but in the meantime I am pursuing GcMAF homecare. I have successfully injected myself and today I have used the nebuliser. (Actually feel a little light headed)

But I will proceed with booking for Germany. Saturday morning, the first day of the week that Pete gets a lie in we both strangely wake at 4am. We both got chatting and I felt it was a good time to discuss my worries about what to do treatment wise. We both agree that doing immunotherapy with Doc Nesselhut and then TACE with Prof Vogl is necessary… my reservations are whether I should simply stay here in the UK and have chemo on the NHS. Pete says that we should keep that as a back up and get going with Germany. So I have provisionally booked hotels but not flights yet. I am booked to see Prof Dalgliesh this week and I wonder if he might be able to shed some light, steer me in the right direction or something!

My friend counselled me at the weekend by saying that I should follow my gut. My gut isn’t totally sure at this stage. I think this one will take time to organise but I only have a few weeks. Eek!

All I know is right now at this moment in time I feel good and I have to hang onto these times. I must not take for granted feeling well and symptom free.

 

What to do next?….Live a charmed life….

Today I feel more inspired. I keep reading and hearing that you are what you think and the law of attraction. I know I am focusing on what to do next, when to do it and if I am doing the right thing all mixed up with emotions of fear. It’s scary, you know, knowing that there is something inside you that is growing, spreading and will kill you given half the chance and all the while you feel perfectly well. I find it hard not to panic and think of the next thing to do. I would like to think that’s me being prepared and being one step ahead of the canSer but in other peoples eyes it can look like I don’t believe the treatment I have had is working and isn’t going to work; such as GcMAF. I am not assuming it didn’t work or isn’t going to work. I just think that it’s going to take What to don nmore than that to stop it. So I guess that is me being negative. The reason is that it’s not just a case of reducing the canSer but actually stopping it in its tracks.

My friend had great news this week that from simply using GcMAF and living a very conscious life involving a ketogenic diet, exercise, infrared sauna, supplements and so on, that the canSer has gone from her lungs and the liver meets have stopped growing. She had faith in what she was doing and didn’t run around looking at other options. She let the time pass and trusted in herself.

A HUGE part of me wants to do that. But I thought I was doing everything right before my scan in January then it really pulled the rug from beneath to be told there had been disease progression and the tumours were that much larger and in my lymph nodes again.

So here I am being told by Dr Hembry to do something like visit Professor Vogl.

I have heard a lot about him and read intensely on the work he does. He offers TACE (transarterial percutaneous chemoembolisation), TPCE ( transpulmonary chemoembolisation), TACP ( transarterial chemoperfusion). More information here; http://radiologie-uni-frankfurt.de/content/e4864/e27/e35/index_eng.html

Basically from what I can gather through speaking to people that have had it, it’s a way of getting chemotherapy into the tumours directly therefore not flooding the body systemically with chemicals. It can be used in conjunction with other treatments such as thermal ablation, microwave, LITT and radiotherapy.

I have been informed that I can have an appointment to have this done in the next couple of weeks.

I already have appointments to see Doc Nesselhut for my next round of immunotherapy at the same time and possibly to treat the EBV virus but I was thinking that maybe this could be more important to really get to grips with shrinking the tumours. It wouldn’t be one treatment either. It would be up to four visits. Last night I was sure that this is what I should do. I know I haven’t had anything to stop the canSer since the chemo I have been having has had no or little effect. And knowing that the canSer is very active I feel like I should do something.

But then it comes back to, am I letting this take control of me? Should I be thinking canSer doesn’t define me and therefore slow down a bit and just live and trust the Universe and myself, let GcMAF work for a while and then see. If I have chemotherapy then the GcMAF really won’t work.

I am concerned as I have a CT scan booked at the end of April and would be due to start chemotherapy again. If I wait till then am I really taking a huge risk of the disease getting out of control?

Another thing is that Prof Vogls’ treatments will cost (clearly) and I could have free treatment on the NHS providing me with chemotherapy. I am shying away from chemotherapy on the NHS because it means it will attack my whole body, I’ll lose my hair (again) and so on… You know the rest.

 

I would really love someone else’s opinion on this. I hope to see Prof Dalgliesh next week. But anyone can give me their thoughts!? I’m open to suggestions. This is something I really need to consider. Whilst studying this week’s module on the health counselling course I listened to a great lecture by Victoria Moran who talks about creating a charmed life. It was brilliant and funny and she focuses on what you attract into your life. It couldn’t have been more apt really. I completely understand that if you are negative then negative things happen and vice versa. It has inspired me to do more of what I want in my life and try to attract the right things for me. I so want to be happy and carefree. I know, possibly, this won’t happen but I can try.

 

On a completely separate matter I have been taking naltrexone for over a year and have had it provided in Germany at a cost (again) and found out that it is possible to get here in the UK.  What a revelation! I contacted the LDN Research Trust, who asked my details. I sent them proof of my illness and then a doctor called me. He took payment for only £35; this included the consultation and three month supply. This is vastly cheaper than what I have been paying. Now I am waiting for a prescription to arrive and on I go. They advise how to take and when. It’s as simple as that. It’s so nice to finally do something without a hassle. If you are interested here is the website for more information; http://www.ldnresearchtrust.org/

 

I had a reply from Doc Nesselhut with regards to the immunostat test that worried me as it said the immune system was deactivated. His reply was along the lines of;

‘In this case deactivation of the humoral immunity (TH2) is irrelevant. Deactivation of the suppressor immunity (TH3) is favourable. And deactivation of cell mediated immunity (TH1) is to be expected in cancer patients. Thus, cell mediated immunity is what we aim to enhance with dendritic cell therapy.’

 

So that’s that then… none the wiser but it sounds ok to me…. I think?!*

 

I have finished working for the week, have cleaned the fridge (on request of the MD) and think maybe I should try and listen to Mark Newey’s hypnotherapy CD he created for me.

 

I had a chat with Laura Bond yesterday and she has really been helping me get clarity on a few things in my life (Not making decisions on treatments sadly). She suggested reading a book called, ‘E Squared: Nine Do-It-Yourself Energy Experiments That Prove Your Thoughts Create Your Reality’ by Pam Grout.

So I mentioned to my hubby that I fancied reading it as well as Victoria Moran’s ‘Living a Charmed Life’. He only goes and buys them for me…Yay!

 

Happy Friday everyone. X

 

Dr Hembry gave me the results…

In my last blog I was just about to pick up the phone to Dr Nicola Hembry. She is a lovely lady and makes me feel very calm. We discussed the results of the RGCC test in detail. The first thing she noticed was the circulating canSer cell levels. Mine were (14.2/7.5ml, SD+/-0.3 cells). Apparently the level should be below 5 and mine is 14.2 indicating the canSer is active and progressive. My aim is to get it below 5. This alarmed me somewhat and I felt my heart sink.

The tests showed the sensitivity to different chemotherapies. Anything above 80% was worth using and classed as more effective. Unsurprisingly Vinorelbine, that I have been on for the last three months only came in at 65%. Capecitabine, the drug I was on for almost a year and was actually quite successful shows to be 75% effective.

The drugs that showed up as most effective are; Gemcetibine 82%, Cisplatin 80%, Carboplatin 82%, Ixabepilone 83% and Eribulin 82%. This information pleased me as I haven’t yet tried these drugs and Eribulin, one I had never heard of until I was recommended by the oncologist at my last scan results appointment. This gives me some hope that there are other effective treatments available to me. Avastin showed only a very small benefit. Two others that I am not sure are available for breast canSer are Erlotinib and Everolimus.

Ixabepilone brand name is called Ixempra and researching seems is the last line of chemotherapies offered for advanced breast canSer.

The results also showed genes that were up regulated and down regulated. The EGF (epidermal growth factor) gene is shown to be 45% over control. This is common in triple negative breast cancer.

Interestingly the genetic profile genes related to heat shock proteins all showed that they were between 30 and 45% below control. This is a good thing as this means this shows it responds well to heat treatments such as radiofrequency ablation, radiotherapy and hyperthermia treatments.

There were other genes such as the metastases regulators that are out of control which increases the risk of the canSer moving around.

Moving onto the complementary test results.

Most surprisingly enough to Dr Hembry was the lack of sensitivity to Ascorbic acid (Vitamin C) She said in nearly ten years there has been only one other person who cannot have vitamin C in order to help reduce the tumours. Why am I not surprised?

However the results showed that the following things do have greater sensitivity;

Lycopene (present in tomatoes)

Super Artemisinin

B17 (laetrile)

Ukrain (whatever this is?)

Bio D Mulsion NuMEdica Micellized D3(vitamind3),

Genistein,

Artecin,

Salicicnium,

Fucoidan (seaweed)

Aloe Extract

PME (Polymannan Extract)

Naltrexone

Paw Paw

Quercetin ( found in onions and apples)

And less sensitive in;

Cruciferous complete

OPC

Fermented Soy extract

DCA (dichloroactetate)

Metformin

Mistletoe

Melatonin

Resveratrol

Indol 3 carbinol

Salvestrol

Curcumin

and many others that I have no idea what they are!

Well this is a turn up for the books. I am surprised at Curcumin. In fact that didn’t come back as a complete loss like the others but isn’t sufficiently effective against canSer. This doesn’t mean I will stop taking it. It is still an anti inflammatory and really good for the system.

Mistletoe also was only tested on specific form and I was advised there are many others that could be beneficial still.

As well as this I had a test called Immunostat that shows immunity activation/suppression.

Strangely enough it showed that there is a deactivation of immunity. Of course this is not great considering I have had immunotherapy. Unfortunately Dr Hembry couldn’t really give me advice on this as she didn’t really understand it as she hadn’t done this test before so I have sent it to Doc Nesselhut to give me a heads up. I hope it doesn’t mean that the immunotherapy hasn’t been working.  I await his reply.

Also today I received a test that I did when I was with Doc Nesselhut last, to establish if I had any viruses. This is on the thoughts that maybe there is an underlying virus and that could be stopping my body from repairing itself. Our Australian friend had said that he thought people with TNBC carried the Epstein Barr Virus.

Doc Nesselhut thought breast canSers were caused initially by bacterial infections through the nipple. Well… the results showed that I do have the Epstein Barr Virus! On researching it is something that can be underlying in many people for years with no symptoms. Nothing to be worried about massively but Doc Nesselhut has said he can treat me for it with an infusion. I would like to know more information on it in due course.

Epstein-Barr virus is in the herpes family of viruses and most people will become infected with EBV sometimes during their lives.

What causes Epstein Barr Virus?
Infectious mononucleosis, or “mono,” is a contagious viral illness that initially attacks the lymph nodes in the neck and throat. When these tissues become less effective in fighting infection, sore throats, swelling of the nodes and fever may result.

Mono is caused by the Epstein-Barr virus, which is named after the scientists who first identified it in the mid-1960s. The virus enters the lymph nodes and attacks the lymphocytes (the white blood cells manufactured there). As the white blood cells come into contact with the virus, they change shape and multiply. At first, there are no symptoms because it takes several weeks before enough of the altered cells can accumulate to generate infection.

If the virus lasts more than six months, it is frequently called chronic EBV infection. Some doctors think EBV is the cause of a chronic condition called Chronic Fatigue Syndrome (CFS), although this has not been definitively proven.

Mononucleosis spreads by contact with moisture from the mouth and throat of a person who is infected with the virus. Kissing, sharing drinking glasses, eating utensils, and toothbrushes, or touching anything that has been near the mouth of an infected person, may result in transmission of the disease.

All in all a real eye opener and I can’t decide if it actually made me feel worse or better?

Bearing in mind this test was done the week after chemo and before my last immunotherapy visit and GcMAF visit.

 

With regards to GcMAF I have now had a report, as such, and have been advised how to take it at home. I require a nebuliser and syringes to treat myself. So I have ordered them from the internet and will start treating myself as soon as they arrive.

It is difficult to tell if GcMAF is working and will have to wait until I have a CT scan.  Even though I had the treatment last week and have more to have at home I still feel worried, especially now I have the blood test results. I am hugely aware that the canSer has been growing especially since I haven’t really had any effective chemotherapy in the last three months. I feel like I am against time and sometimes that I don’t have many options.

I have to admit yesterday was a bad day. I felt very down and worried about all this. I have no idea what is working and speaking to Dr Hembry, she will send me a list of treatments and supplements that I could do with the complementary options but this isn’t going to stop the canSer. It will probably just support my system. She said, ‘If I was advising a family member I would suggest getting some form of treatment perhaps using the chemotherapies that looked promising on the results. We then discussed visiting Professor Vogl in Frankfurt…. So that is where I am now… emailing Professor Vogl and getting something started before the end of April when I have booked to start chemo on the NHS. Of course I am reluctant to do this but will if it means it stops this from progressing. I am feeling better today and more positive about it all.

More on the treatment offered with Professor Vogl next time….

 

Day five…Taken up the Eiger.. Ooer Mrs!

Sleep! Last night I had an amazing sleep. But that was after having pain in my heart/chest. I’ve noticed the last two nights my heart racing. I am putting it down to having the amino acids that were prescribed by the clinic. They do advise not to have them close to bedtime. I took my last dose at 6pm. That’s hold be plenty of time. A little worrying but thankfully must have calmed down as I had one of the best nights since I got here.

My appointment went well. I think. I had my next round of treatment then I was scanned by the German doctor there. They feel the blood supply in my spleen looked really good therefore indicating the macrophages were doing their work. They weighed me and took all my measurements like the beginning of the week to see if my muscle mass had improved. No. In fact my weight changed three times on the scales in 30 seconds. I have in fact out on weight, lost muscle mass and increased my BMI. This doesn’t bode well. I am taking 30 amino acids a day… how is that possible? I am not sure that the scales were right.  My scans will be seen by Prof Marco and he will be sending me a report of how he feels things went and what to do next.

This afternoon Pete had a little surprise for me. We drove for about two hours into the mountains and we ended up in Grindelwald where many films have been made but

most importantly it is a ski destination. The sun was shining the mountains looked stunning too. Pete had been talking about taking me to the Eiger all week. The Eiger is featured in movies too. We had a blissful afternoon sunning ourselves and walking in the mountain air.

On the way home we stopped by the most amazing lake where there was a diving board to swim in it. Tempting but maybe a bit cold at this stage of the year.

We got home and had a little picnic in our room. Thank goodness for Aldi! Ha ha!

Blog By Bear for all the other Bears….

So Claire is having her treatments and I thought I would write a Blog for all the Bears. This is fraught with issues however. What analogy fits best? I first thought Head Coach but the more I ponder it the more I think Colonel is the way to go.

 

So when Claire had her first diagnosis this was nothing more than a small uprising. I read up and it seems that this was very treatable, the doctors were very confident and on advice it seemed that the standard treatment would work to put this uprising down and we could get on with life.

 

If you are at this stage then please stop right now and realise that, the doctors aren’t always right are sometimes over confident and start acting now like we all have at stage 2.

 

Stage 2 is about 6 months later and comes with a terminal diagnosis, all of a sudden this local issue has gone global and you are engaged in a full scale war, with no Geneva Convention, no prisoners and an attrition rate that makes a Battalion in Afghanistan look safe as houses.

 

So what does a good Colonel do? Well like me you probably started with knowledge. Lots of knowledge and mine created the 10 point plan, that we still live by today. Then you gathered your staff officers around you. Mine are incredible. Our friends and family go through hell with us and then come back for more, they are our strength and motivation and we could not love them more dearly or be more grateful for their support.

 

Next comes the Battle plan and for this we need strong allies.

 

Veteran troops who have been fighting this battle for years, with traditional methods, but also new recruits, who are fellow soldiers with exciting and innovative ideas. These are the special forces, at the very edge of this fight and to support them we have “Q”, the scientists and physicians we have met who with passion and dedication have stepped outside of convention to search heart and soul for a cure.

 

As Colonel in charge you then have responsibility to make this work. How many times do you hear, “we can’t give a cure, this is about living with canSer and dying of old age, not a cure”? Well maybe this is true but the aim is to win, so let’s keep that vision in mind and settle for long term survival. The reinforcements are coming – I can see advancements every day and the awareness is getting stronger. This is an unstoppable force if we all fight together.

 

So how does our role differ from the loved one we support (not much I hear you say) but to me there are two huge challenges.

 

The first is to preserve normality. From day 1 we both decided that we would acknowledge canSer but not give it the respect to dominate our lives. We have lived to this and try in every way to be “normal” (not easy for us) but then you have the big “abnormalities”.

 

Waiting on a scan result, effects of a new chemo, trips for treatment abroad. This is almost insurmountable and like me you probably approach them with dread and determination. Dread at what is outside of your control and determination to action that which is. This is our job, to make the best platform for our loved one to be healthy and happy and that means “normal”. I remember asking Claire, “Where in the world would you like to go, what would you like to see and do?” when we were faced with mortality and her reply, “ I love it at home being loved and in my safe place”. If you can maintain normality when all about you is falling apart then you are succeeding and should be proud of all you do. I am still trying!

 

So what’s the second thing? Well to me its support. It has to be real and has to be from the heart. There are two types and both scare me (I know the little phrases about worry but I just can’t control these), emotional and physical.

 

When you are faced with THAT question, “It’s all going to be Ok isn’t it?”, then you had better be 200% certain in your head, have all the facts and know the theory because the answer is the world to your loved one. Knowing where we go from here – That’s the Colonels job and hopefully sites like Claire’s are huge support in that. Having the right allies also helps – I’m here if you need me just pop onto the forum page.

 

Then the physical support. Fighting this war is not cheap and the fear is that funds will run out. Well perhaps it’s not resources but resourcefulness and I am going to dedicate my life from now to ensure that all treatments are available to everyone – if anyone can or wants to help with this, let’s talk. Nothing can stop a determined group of motivated individuals let’s do this together.

 

Who knows guys maybe we’ll get a promotion to General – love to all your brave soldiers’ xx

 

I will blog soon about my feelings on the different treatments we have been having.

 

GcMAF Day 3… Wonderful day in Montreux

I checked my email frit thing this morning and noticed a message from a friend of a friend who is here in Switzerland having GcMAF!

I quickly replied and planned to meet her. Wow! How small is this world?

I had an early appointment today and it was nice to get it out of the way. They scanned my spleen to see the activity and increase in blood supply. They believe this shows a good response for the macrophages. My spleen has had an increase in blood supply- so that’s positive.  If only there was a way of knowing if it’s slowing or stopping the tumours in my lungs?

The rest of the day has been bliss. We spent the afternoon walking in Montreux along Lake Geneva to Chateau du Challon to Freddie Mercury’s statue, up to the old town, fluffed a cat called Jambo and bought some new shoes! Whoop!

We then met a friend of a friend. It’s so lovely meeting new people and very enlightening comparing our treatment experiences.

The thing I keep noticing is how well all these people are. It keeps me hopeful but I also think how many of us are out there doing the same?

I’ve really had an awesome day with my hubby …

..Cos I’m happy. (Clap along if you feel like a room without a roof…. Fa la la)

Day two…

We started the day in the gym this morning. Pete was helping me do exercises to open my chest so I can breathe more- taking in more GcMAF using the nebuliser.

My appointment wasn’t until the afternoon so we spent the day doing homework and Pete skyped with the office. It’s amazing how comfortable we felt. Pete walked me to the clinic but left to continue his work.

Treatment was fine again – not much to report really.

We hopped into the car and to Ouchy, the place where the Olympic movement was founded. Great name for it! We had a quick wander round the museum before settling for an early meal.

An early night for us. I had an Epsom salts bath then hopped into bed…