Off again…

I haven’t been ignoring you but I have been having fun… again. Even amidst all the drama we have plans and I aim to keep hold of those for as long as I can.

Pete and I had planned to visit friends in Ireland this weekend and the booking had been in place for months. I was worried that things would clash but even if they did i would’ve moved them in order to visit our dear friends.

Pete and I had a long weekend in Cork and were treated like royalty. We laughed, danced, ate (a lot) and drank…Each day was different and on Sunday we drove to the beautiful Inchydoney beach and stayed at the beautiful spa there. Oh it was blissful. Yesterday we flew home and as ever reluctantly said goodbye to our wonderful friends.

Friday morning whilst at the airport over breakfast Pete and I got chatting about what to do next. I had already been in contact with Professor Vogl in Frankfurt regarding having TACE. It had been pencilled in for Wednesday 15th, tomorrow. I wanted Pete to email as he is German and to tell him it wouldn’t be feasible because of timings etc, but having spoken to my friends last week and also because I am acutely aware that I really need to get some treatment started Pete said we must go.

He checked with his work diary and made so many changes and that was it I started booking the Eurotunnel and hotels. Emails exchanged between Pete and Prof Vogl and we have agreed that I will be there tomorrow morning at 7am to see him and have treatment that same day.

Right… it’s all a whirlwind and whilst I have an hour before we leave I decided to update the blog.

I feel really weird right now. I have been contacting many clinics and having many email exchanges and I believe that whilst I can I should. The worry of logistics and money are always there and the upset this is causing Pete really worries me. I wish it was different but I have to try. Things will fall into place.

So this is how it stands. Today we leave and drive to Frankfurt. Tomorrow morning I have TACE then we drive to Belgium for an overnight before driving back to the Eurotunnel to get back to the UK.

Friday I have booked to see Dr Julian Kenyon on the referral of Dr Nesselhut to discuss Photodynamic therapy. We have heard a lot about and my pal Peter Trayhurn had good results in his lungs with this treatment. I think it is definitely worth a consultation. Julian actually said to get an appointment for Friday, on his day off to get this sorted. I called this morning and have booked for 11am in Twyford.

Next Monday I have an appointment at the Churchill hospital to have glomerular filtration rate which is apparently to see the functioning of my kidneys. Eh? I contacted the secretaries at the hospital who told me this in preparation for having the carboplatin chemo on the NHS. OK right. Well I will go for that even if I won’t be starting that imminently. I am booked and have signed the consent for carboplatin and gemcetibine chemo but I may postpone for a few weeks.

At the beginning of November I have DC therapy booked at Doc Nesselhuts and may also squeeze in more TACE with Prof Vogl AND even have insulin potentiation therapy with Dr Seibenhuner. I have emailed Dr Seibenhuners clinic to find out more but as yet haven’t had a reply.

After that I may decide to go for NHS chemo. I think it could be a good way to go for a short while…

Next Wednesday i am booked for the immunotherapy vaccine at the London Clinic and think it could be good to still give that a go.. Another hole in my arm but what the heck. On that same day I am also booked at another clinic in London to have a discussion about having Mebendazole prescribed.

It all sounds mad but maybe this combination could be good.

I am still waiting for a reply from St Barts but just now had an email from the secretary at the Churchill hospital who says she had a contact at the gamma knife department at St Barts who says they will be in contact soon. Not soon enough for my liking… get these buggers out of my head!

I feel actually a lot better in many ways but worse in others. Over the weekend my cough was annoying to say the least but then it turned into an actual infection on Sunday night. I actually feel better coughing up phlegm than I do just having a dry cough.

I feel less sketchy than in my head. I definitely felt like I had cognitive difficulties the week before but now I have clarity and can think of what I want to say. I am a little dazed with the steroids I take but I am managing them well. I will soon change the dose again as suggested by Dr Oliveros.

So that’s where we are. By the end of this week Pete and I will need to catch up on Strictly Come Dancing and The X factor and hopefully normality will resume… sort of. For Pete this is a nightmare. We are creatures of habit and nothing feels right. All we have is each other but with me having symptoms and feeling constantly emotional it is the hardest thing for him to deal.

Tempers flare and emotions pour… I find it hard not feel guilty and wish that every day could be different. I can’t and I refuse now to try to change that. I have to do this and try. I can still be canSer free and I just want to prove that.

I have taken the big job of contacting all my current clients that are booked in my diary and have told them honestly that i will not be working. My job is to get better and when I get more time at home I will return to exercise and more meditation. I long to feel well and eat better and live cleanly. I am not moaning about the food I have been eating recently. I feel nourished and actually have a huge appetite which I think is great. I put on 3 pounds over the weekend and I don’t care!

I have tried to balance my diet this morning by having a veggie smoothie, an alkalising lemon drink and bravo probiotics yoghurt with fruits. A good start I think!

My bags are packed and my kitty is being cared for by wonderful friend Sarah once again. I don’t know what I would do without her. Hopefully everything will go smoothly over the next few days…It’s going to be an experience that’s for sure…

I’ll keep everyone updated.

Light and Love. XX

Boo… brain tumours…

 So I went to the hospital. Pete came with me and was really sweet and asked if he could come into the MRI room with me. Have I mentioned I hate MRI scans? He looked at me the whole time through the little gap.

I then had a CT scan. The guy was really interested in a story that Pete told him and I don’t know if that was a good thing or not but it took our minds off what we were there for. Then, on our way to the CT scan they said I was to be seen in triage. Oh god. I knew exactly what that meant. That meant they needed to see me to give me bad news….My heart sank and I felt dizzy with sadness.

It was all a bit of blur with my mind racing and then putting on a brave face I was told that there were four tumours in my brain. Oh B*****ks, for want of a better word!

A few things were asked but I was told that I had to go on dexamethasone that night and to continue taking it the next day. Did we have any questions? Um…….? It was all a bit too soon for that.

What we should have asked was ‘did I really need to take the night time tablets as they make me frantic?’The answer should have been yes, or alternately they should have perhaps pointed out that it was necessity to take those tablets.

I woke up with such a terrible headache and found out that I should have taken the tablets because the headaches were so terrible due to the inflammation that the MRI caused. Thanks guys for telling me! But then I guess they expect  normal people to follow their instructions. Have they met me before? Ha-ha.

We came home and Pete was very clear on it all being ok. He said that there is nothing new going on there. It has been like it for six weeks, there is no need to worry now. I know he is right and I know that nothing has changed. We just needed a plan. As always.

The next day I got a call at home and it was Emma, the lovely secretary from the NHS. She said that could I go to see Dr Oliveros at 4.40pm that day. Yes, absolutely. She told me where to go and I let Pete know. We got there at 4.40pm and was told there was a delay but that’s standard I guess when it’s late in the day.

By this time we were both in quite good moods, bizarrely enough. The news had sunk in and even though the meds make me feel manic I felt quite calm and I had spent the day on the sofa. However that wasn’t as much fun as I had hoped. Time was slowly passing and I just wanted to get on with something.

Dr Oliveros is lovely. Really happy, very explanatory and an all round nice girl. She explained my options. Firstly; surgery, secondly; gamma knife and thirdly; whole brain radiation. The first one, I can’t have. It can only be for someone with one tumour. The second is potentially an option although because I have four tumours I am outside the remit. Can you bloody believe it? However, Dr Oliveros is going to put an application in for consideration anyway. It would be done by a colleague of hers at St Barts, London. Even though she knows there is a chance it might not happen she still feels that we could just slip through the net.  Thirdly would be whole brain radiation. Now this doesn’t fill me with joy but I have spoken to someone who says it is potentially very good. The down side is cognitive issues as well as hair loss etc. The course would be for ten days and that is it. I would need a mask so I cannot move for about three minutes at a time.

So that makes me feel quite good. The fact that she is trying for what thinks would be a good option then getting me to sign the consent form for whole brain radiation just in case.

There was an option to say if we cannot get the gamma knife done because of it being over the limit of tumours, can we pay for it? Well if we must but come on! I tell you what; we pay for the first one then you pay for the others. Deal?

She did say a few things that worried me. She said that she was surprised I looked so well considering the swelling was so bad. The tumours are tiny, the biggest only being 1.5cm. It is the swelling that is causing the issues. She said also that this is very serious. Do you think we didn’t know that? We were just trying to make light of it whilst sitting there with her.

We came home and I have to say I do feel different. I don’t know if it because I have the knowledge that something is up or if because I am scared or just because….

I still don’t have the results for the CT scan as yet but I am due to see Prof Harris first thing Tuesday morning. That will then tell me what is going on everywhere else.

 

I went to see my acupuncturist today and we chatted about il2 injections and their purpose. He said that it is quite likely they are doing their job. This is something Pete has also said. He said that the injections were working so well that it is highly likely that is why there is so much swelling. Exactly what Mr G said. He said that the DC cells and the il2 were all having a positive effect (well and negative effect) on this.  Well that is good in a way but also not great for me, in others.

It’s all swings and roundabouts isn’t it?
I feel like I am chasing it around my body. And what about this blood / brain barrier? How did that all over of a sudden stop working?

The doc said we don’t know if there are more in there. I hope, of course, that there aren’t. I am assuming as the tumours are small and they haven’t been there that long.

So where does that leave me now? I guess that means we wait for more results.  In the meantime I will get more info from Prof Harris and then find out from Doctor Oliveros the next step. I have everything crossed that she can organise the gamma knife. It would mean less invasion of my brain!

In the meantime I have informed everyone who are involved.
Dr Nesselhut wants more info.

Prof Dalgliesh seems to think gamma knife is a great option and if they won’t do it for free here to go and see one of the best in the UK.

I have also contacted Prof Vogl, who does TACE (trans arterial chemo emobilisation) This can not only help the tumours in my lungs but all slow/stop the ones in my brain.

Today I have had a call from the London care oncology clinic who has said that I can have an appointment to discuss Mebendazole. Just because one element of treatment isn’t working doesn’t mean I should stop everything. Therefore I have to continue with my plans as before and investigate every avenue.

I feel better knowing what is wrong with me. I feel better having a plan and I also feel better on the whole. I do feel a bit sketchy but that could be the drugs. Bizarrely enough the drugs reduce inflammation as they are corticosteroids. This is again the body using my immune system to help heal me.

 

The support I have been given is overwhelming. I cannot thank everyone enough for their love, respect and drive that they have given to both Pete and I. I simply couldn’t have done it without Pete and he was scared too. Bears aren’t meant to be scared and he didn’t like it. I feel terrible knowing that everyone has to go through even more of this crappy stuff but I can’t help where it goes. I think I can, but I can’t.  I know mind over matter helps but who knows how this disease really works.

I have had over 3000 people look at my status on face book. That’s crazy and so lovely knowing that people really care. If I could thank you personally, I would.

So that’s that, the next chapter of this book. I have to keep going. There is no other option. It seems harsh to everyone involved and a real kick in the teeth but as I always say, ‘no one said it was going to be easy’. Damn right….. Anyway I have bought a lottery ticket tonight maybe my luck will turn!

Headaches…..

Today is the dreaded MRI and CT scan. Why dreaded? Well it’s obvious really…

I won’t know the results for a few weeks but right now all I can think is, ‘Please, make this bloody headache go away!’ I am not so concerned about the cough, although maybe I should but I never expected to come back from my holidays feeling worse than when I went away.

All I keep thinking is that it could be anything. Headaches are caused by so many factors and this one keeps changing from the side of the head to on top of the head and so on.

I’d really like to know how to nip it in the bud….

The next two weeks are going to be long but onwards and upwards and if I can shake off this drowning feeling then all will be well.

X

Time to heal myself….

Yesterday I cancelled my pranic healing appointment. I had to go to hospital but ever since I didn’t go last week as I wasn’t feeling up to it I have been undecided what to do. Last week because I didn’t cancel 24 hours prior to the appointment I was asked to pay. Ok this seems fair as everyone is running a business and I know far too well about people cancelling last minute and I too have a cancellation policy. But I don’t charge because I ask people to be flexible with me and because of my circumstances and also I give people allowances. It most often can’t be helped and although I lose out on the money and I could really do with it I think it’s best to keep those clients than to drive them away.

I felt really put out by being asked to pay and maybe because I was a little under par last week I responded when I was told. I asked if they want me to pay for not giving enough notice then is it ok that I am left sitting there waiting for my appointment whilst the therapist runs overtime or hasn’t turned up? What’s my time worth? And let’s not forget the time he didn’t turn up at all. I travel a good hour by car there then back for the appointment.

I am not sure whether I was testing them to see how they would respond. They said on that occasion they would overlook the charge. Hmmmm.

I have had a feeling of change about me and maybe now is the time not to have so many healing appointments and rely on other people to make me better. I think I should be healing myself. Work on my being. I decided that I would use an app I have and spent half hour yesterday listening to some hypnotherapy and visualised healing.

I think it is all too easy to ask someone else to heal you, but we have the ability to work on ourselves and although it is hard sometimes it is really worth it. It’s like meditation. It doesn’t come naturally, but with practise it can be a really useful tool to relieve stress and to become more mindful.

I have been feeling quite anxious recently when I go for pranic healing. The journey there is on the M4. Not the nicest of motorways. Then there is the waiting and the worrying if the therapist will actually turn up or how late he will be. For me, I like planning my day and knowing what I can fit into it. Running late isn’t acceptable to me. I understand sometimes but to have to accept it every time can be hard work for someone like me. It actually made me laugh last week when I was contacted only ten minutes after I was due for my appointment. The therapist has only ever been on time once in ten months.

The way that I was feeling when travelling there and the anxiety it caused waiting completely takes away the purpose of the visit itself. Pete said it is a waste of my time and money and it has an adverse effect on me. He is right. I do have more appointments booked but I think I will really consider if it is for me any more.

 

Sometimes it is better not to have every treatment available and take a step back to consider what’s right for you intuitively.

 

 

Oo this is a tricky one…

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

Please let this thing end…

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….

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…

 

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…

A few turbulent days in Germany but well worth it..

It has been a hard few days. We left at the crack of dawn, well earlier actually, to get our flight to Hannover for our flying visit to Duderstadt for treatment with Dr Nesselhut. It was beautiful weather there and everything seemed great. We had good food and even better great company. On walking into our hotel we immediately met a wonderful Australian couple who were so pleased to speak to some English speaking people! Within minutes we had discovered that they were there for cancer treatment also. It was for their 29 year old daughter who has glioblastoma multiforme or GBM. This is a brain tumour that is aggressive and hard to treat and actually life threatening and shortening. Their daughter wasn’t given many months to years to live but defying all odds she is still well and all clear about three years on. This is down to her drive but also her families undenying love and passion to save her life. The father and mother have dedicated their lives to caring for her. Her father, Tony has done everything in his power and super skills at research to find the best possible treatments for her whilst her mother, Lyn has helped with injections and general caring. What a powerhouse. You can feel their love and boy you don’t want to mess with them!

Jenny, their daughter has had some radical surgery amongst some radical treatments but has come out of it well and currently all clear. That is why they were at Dr Nesselhuts’ and the Hallwang clinic. Their research continues and the treatment is there to find out what is actually causing the canSer.

We felt honoured to meet and spend time with them. They were genuinely very kind and were sharing so much information. Tony thinks that canSer is caused by either a bacterial or virus within the body. It affects the immune system and hides there. So despite treatments to eliminate the tumour it isn’t curing the cause. And that is what they were on a mission to find out. Jenny has had the RGCC test and is finding that a virus is harbouring in her system. This really does resonate with me.

I certainly believe that our bodies created canSer therefore it should be able to get rid of it. Therefore an antidote or treatment to get to grips with those sneaky canSer cells would be logical.

On Sunday night after a lovely evening with my hubby I woke at 2am. I hadn’t been for treatment yet and was feeling very shaky and sweaty. I felt like I was coming down with the flu yet had terrible upset tummy and sickness. Our thoughts were food poisoning but Pete had eaten the same as me. Whatever it was it made me feel awful for a good few days. I was determined to have treatment but knew that having Newcastle disease virus wouldn’t make me feel much better. So for the last few days I have been a bit of a wreck. I haven’t been able to stomach anything other than green tea and water. (And even the green tea I think was causing me issues.)

Yesterday we met with DR Nesselhut Senior. He is simply such a lovely guy. He always seems so positive and explained that the vaccination I was having was quite a risky one. Now they tell me! Apparently research shows that the antibodies they were using in a larger dose caused 20% remission, 40% stable disease and 40% death! Oh joy… Pete and I looked at each other- telepathically thinking we have time to get up and run! He also explained that in that dosage the cost was 100,000 Euros. But then the Doc explained that in such a small dose the cost was clearly far less and the response would be completely different… they hope!

I didn’t run and I am still here currently fine…

We were advised when speaking to Dr Hembry last week that we shold mention ‘antisense’ to Dr Nesselhut. Not really knowing much about it we did. Here is a link to general terms of what it is; http://en.wikipedia.org/wiki/Antisense_therapy

He said that he didn’t believe that breast canSer was caused by a virus but more by a bacterial infection that goes in through the nipple. I guess that makes sense. But we all know that triple negative seems to be tricky and nothing is really the norm when it comes to TNBC.  That said I had my blood taken to have a range of blood tests to see if I have any virus harbouring inside my body. No doubt it will be pricey but it would be interesting to know what is happening inside of me.

We travelled to the airport and made our way home. I long for home when I feel poorly. My bed was calling me and after a (bad) night’s sleep I do actually feel better. I don’t have cramps any more but do feel a bit light headed. I don’t think I will be exercising today but I do want to start eating.

There is much to be done, especially for Pete. He is trying so hard to run his business successfully and raise enough funds for treatments. But it is all worthwhile. As long as I can stay well and have options ahead of me then its great news.

Dr Nesselhut gave us an analogy of the different kinds of input we as ‘incurable’ canSer patients are give from ‘regular’ doctors. A man wants to climb a mountain. At the bottom the guide says, ‘You won’t make it. Don’t risk it’. The man climbs and gets half way to a hut for a drink. The bar man says, ‘You won’t make it to the summit, you will never do it’.

But, what if the guide at the bottom says, ‘You can do this, you can make it to the top.’ Then at the hut, the bar man says, ‘you’re halfway, you can reach the summit, keep going!’

Dr Nesselhut became very animated and was very passionate about it. Bless him. We understood loud and clear what he wants us to do. I won’t give up. I just cope better when I’m not feeling yucky from a stomach upset!

All in all it was a very successful trip and the highlight was meeting our new friends. We hope to see them again someday with hopefully amazing news.

 

                  Out for a lovely walk in Duderstadt.

So there’s good news and there’s not so good news….

There’s good news and there’s not so good news. I can’t say there is bad news because that just isn’t right.

Today has been challenging. I left home at 8.30am because I wanted to be ultra sure I got to the hospital on time and could get my bloods done before my appointment for scan results. I cannot believe it took me an hour and half to go a normal twenty minute journey. That was fine as I got there just in time for my appointment. But then had to wait over an hour to be seen. And sadly not by Prof Harris as he was away. (We were both so looking forward to seeing the Profs ‘happy’ tie  )I knew as soon as they told me that I was to be seen by another senior oncologist that the news was not going to be great.

To be honest that was the worst of it. Waiting. The knowing. The dread. The look on both of our faces. That’s the worst feeling. Once inside the room and sitting with the oncologist then anticipation is over.

The news wasn’t what I expected. I had a really good feeling that this time was going to be ‘my’ time. That something brilliant had happened. Everything inside me tells me I am well. I feel not only physically brilliant but mentally and emotionally. The scan results as usual are confusing and do not correlate to the previous scan. It’s like trying to decipher code. But on looking at the actual scans on screen I can see some changes. But not much.

So that’s a positive. The long and short of it is… I have had, what’s known, as disease progression in the tumours in my lungs. They appear to have increased by about 20% in the right lung and lymph node. The left lung doesn’t look like there has been much activity but they ‘assume’ that they too have increased. (Would it be so hard for a bloody radiologist just put details of everything they see? And can they please not confuse upper and lower lobes?!) We are still talking small sizes no bigger than 2.3cm. But that is still an increase and I have to say I was hugely disappointed.

BUT then I was hugely relieved.

I have not had any disease spread to any other organ or bones. Phew! That makes me so happy! So I am still containing it but the onc reckons that the chemo, Vinorelbine is not doing anything. There is an argument there that it could be doing something and that in fact the tumours grew a lot in the time I wasn’t taking any chemo and have gotten small since but the onc’s gut feeling is that it isn’t working.

So onwards to the next treatment option. It has been suggested I start Eribulin. Nicky, the oncologist was excited by Eribulin and has seen good success and it could help me survive a lot longer. It sounds like she has to request funding for it and is only given after a patient is on their third line of chemo. The down side is that I would lose my hair again and probably feel rotten and it’s given intravenously.  But that’s what they said about the last year of chemo. I don’t relish being bald again but hey ho… It’s just hair and men lose theirs all the time! The other option is Carboplatin and Gemcetibine. This we have heard of. And it has been quite successful for many.

Pete and I sat there so overwhelmed with what to do next. It’s so hard making decisions when you simply do not feel ill and when every cell in my body is saying, ‘don’t have any more treatment’. But the other part of me is saying, ‘give me it all! I don’t want to get any worse’. It is so hard making decisions about life and death.  We decided to let the onc know tomorrow once we have thought about it but we think we have already made a decision.  I am going to finish this cycle of chemo I am already on. Then I have a few weeks till I go to Switzerland to have GcMAF. In between now and then we hope to hop to Germany and have some more DC therapy. I have contacted Doc Nesselhut and await his response.

During our appointment the onc did mention that maybe, just maybe I could have the larger tumours ablated. We have discussed this with Prof Dalgliesh before but he hasn’t got back to me. So we agreed for her to try and get the go ahead through the NHS. Nicky did say not to get our hopes up. Why would I? It is the NHS after all. The reason for not doing it would be that I have other lungs mets and that it would be pointless. I am sure the radiographer would feel differently if it were his life or someone he loves.  Any who….

I had a little wobble, a few tears afterwards, but then had a big Bear cuddle and came home. Pete went back to work and life goes on. I feel remarkably well. I am bit confused as to what I am doing differently that is causing the canSer to grow. I feel maybe that the treatment in Germany needs to be intensified and more often. There are other things I could be doing but then there is so much out there to choose. It’s so hard to know what to do next and I wish someone would just tell me! But what works for one may not for another.

All I know is that nothing is different for knowing this information. Really not a great deal has changed. When the tumours were that large before I had pericardial effusion. There is no mention of that. So the lymph nodes are currently working OK.

So not all bad. See the positive in every situation. We also got to meet a lovely TNBC supporter whilst waiting. A canSer patient who looked really well and came and talked to us. It’s so great knowing that people follow us and our story and that they feel it helps.

I wish I had the best news for everyone and could tell them that there is one particular fail safe treatment. But I can’t. Not yet at least. We are working on it!

So what’s next? I have to consider other treatments such as intravenous vitamin C, chemo-perfusion, mistletoe, RGCC testing, Halean 951 and more. Not sure where to start. Best get researching some more….