I am not dramatic at all… am I?

Our journey back to the UK was as expected, fractious. I always knew it was going to be hard. It always is when you are up against time. I thought I had given us plenty of time to get to the Eurotunnel but sadly there was a glitch at the clinic.

As we were leaving and preparing dates for our next visit they informed me I would need more blood taking. More blood?! I only had that done on my last visit and they were clear when they said I didn’t need to have that done this time. Of course I let slip…. I trusted them. Now I am not complaining but this is a lesson for everyone. You have to be on top of things and constantly asking. Pete asked them why they hadn’t taken it during my appointments this time. The lady said she didn’t know. Pete asked who was responsible for it. She said she didn’t know. Right…..
I nearly burst a blood vessel in panic and frustration but luckily they agreed to take my blood before I left. The problem was they had delayed us for almost an hour and then made me wait a further 45 minutes. So that meant we left two hours later than expected to get home.

We desperately wanted to get past the tricky rush traffic in Central Germany. Oh we wish…
We got stuck and some. Then we were in every traffic queue going, due to accidents. But Pete ploughed on and got us to Calais about two hours before our booked train. I always book with time to spare and normally we hop on an earlier train, as you can do in normal circumstances but not this time! They made us wait until 22.50pm! Then I looked at the board and they had shunted us back to an even later train! I had a little spat with the train staff and they got us back on the earlier original train. Apparently because of holidays it was much busier than normal. Well maybe getting there later than expected was actually a god send. If we had got there four hours earlier we may have had to wait until 22.50pm! Hmmmm.. Every cloud and all that.

Once we got back into Blighty we had a good two to three hour drive home. You would think that at that time of night it should be fine but there was so many road works, traffic jams and crazy drivers! I was so pleased to get home and slip into our own bed. In total we were driving for 11 hours.

So treatment went well, apart from their lack of organisation for future visits. This is my advice to anyone in this situation. Keep in control. No one else will do it for you and the staff really do not consider your location, costs or time.

Since we got back I have been catching up washing and enjoying being home again. I have felt reasonably well all except a throbbing in my head. I am sure all canSer survivors feel fear when they have new ‘things’ going on inside of them. For a while I had a blind spot getting in the way of my vision. I was worried but stuck it out and now it has gone. Well this throbbing in my head has worried me. It’s something I have never felt before. Pete pointed out it only came on when I had my treatment and it could be a good sign. I agree, it is likely to be nothing. I hope.

So I went to bed with an open mind and just thought to keep an eye on it. I had no trouble sleeping and the throbbing went away during my slumber. It returned but less than yesterday. I thought this is good… But then I got visuals and have had a migraine this afternoon. I used to get migraines a lot previous to being diagnosed with brain tumours but this does worry me.

I awoke in the night and had a feeling of extreme panic, a rushing of adrenalin and blood. What if things had progressed dramatically? What if I was having an aneurism?! I am not dramatic at all, am I? But you know living like this is hard. All the years I used to have niggles and ignored them and they went away. This disease has made me paranoid! The thought of gremlins in my head, does my head in!

When the symptoms completely passed and when I stopped taking steroids and there were still no symptoms I felt great. When my results showed that the tumours were tiny I just hoped that they would continue to get smaller. And then these annoying things start happening…. Oh well, I have an MRI scan booked for Monday. I guess it’s come at good time.

I had a knock at the door yesterday. It was another bunch of flowers sent by Pete, as he knows I may be down on my first day without him. Bless. They are lovely. I’m a lucky girl.
The weekend is here and there is plenty to do and to enjoy. X

Booked but no confirmation as yet….

I received an email from a lady working at the gamma knife centre at St Barts yesterday, just past 5pm, saying that Dr Plowman wanted me to book in for another outpatients appointment and then he would let her know the next step. She asked that I call his secretary the following day to book it in.

I replied immediately asking why Dr Plowman would want another outpatients appointment seeing as I had just had one last week? Of course I didn’t get a reply. It must have been home time.

This put me in somewhat of a bad mood for most of last night. I tried not to let it bother me but I couldn’t help worrying. What did Dr Plowman want to see me for? He had said that I would be getting an appointment for the procedure. I could only think the worst and different scenarios were going through my head like what I would say on the phone to the secretary and how I would need to argue it out. I tried calling there and then but of course being after 5pm there wasn’t any answer.

Luckily, having a bath then getting an early night meant I slept really well. It’s not hard when you have a big Bear snuffling beside you. The best sleep ever.

I got up and as soon as 9am came I called. No answer. Then I had to go to the doctors. I have had enough of the skin issue on my chin and around my nose. I have tried everything from Sudafed, to tea tree, to natural products and more. Nothing has been working and it has slowly got worse. I had my suspicions of what it could be and it was confirmed by the doctor. I have a form of dermatitis that affects the areas on the face like mine. I have been prescribed some cream which has already started to work. Bonus!

I got back and immediately got on the phone again and this time had an answer. The secretary was lovely and very helpful. I explained my situation and the fact I live in Oxford and so on. She went and spoke to the doctor who said let’s bypass the outpatient appointment and book me for the gamma knife procedure! Argh! Result. I have been pencilled in for late April and will get an email and letter to confirm.

I have been told to call again tomorrow if I don’t receive anything by ten am tomorrow. So far nothing….Seriously, I know I am a lady of leisure right now but chasing doctors isn’t up there on my list. However, this is really nothing to complain about in the scheme of things is it?

My energy is feeling all floopy today. I don’t feel driven like I did last week. It’s weird how our moods change. I’m aching quite a bit since I started a new exercise regime and I think that’s making me more tired than normal.
It’s cold again here and we awoke to a foggy garden. This afternoon has been bright and sunshiny.
I love it that I can get out in the back garden and have a cup of tea in the warm rays. The summer is going to be great and the garden is going to get full use! I am not wishing my life away but it’s right up there on the things I am looking forward to!

Until tomorrow when I hope I have confirmation…..

Letting go of the niggling thoughts…

Things are going really well on a day to day basis. It’s unreal that only last week I was having treatment in Germany. Thursday and Friday we got back into routine and began a new regime. Pete and I desperately need to feel better and that means making lifestyle changes. Pete wants weight loss and to be fit and healthy. I need to feel strong and balanced and improve my bloods. With being away so much it’s hard unless you put your mind to it. It’s all about planning.

The weekend was brilliant. We had lots of sleep, cuddles, love, laughter and the sun shone. We worked hard in the garden and cleaned the cars. Our godchildren visited and ran round the garden. Then yesterday we had a family dinner. These are the simple things that make me feel complete. I feel like I achieved something. It’s cathartic.

We didn’t drink any alcohol and I feel great. Pete doesn’t notice changes as much as I do. He had withdrawal headaches from stopping eating sugar and having caffeine. If nothing else I want Pete to feel healthier. The foods and drinks that go inside him now will be more nourishing.

I’m taking more supplements now. Nausea and vomiting has definitely passed and I’ve decided to stop taking the steroids. I was on such a low dose that my body makes that much anyway. So far so good. I’ve introduced reishi spore oil again. I really think mushrooms are great for the blood.

I’m on a mission to really get into exercising again. I need my body to feel stronger.
So with all these positive changes and improvements why do I still have niggling thoughts?

It’s been a tough four and half years. The last five months in particular. But I know that they’ve been rough because I’ve combined many treatments that take a toll. Now I’m on nivolumab with dc therapy mainly, apart from a few other bits and bobs. The thing is I’m worried. I’m worried that it’s not enough.

Three months of it and then I’ll have a scan. When I was having TACE and infusions with IPT I kind of new it was working. Symptoms were going and I could feel my body improving. Having a scan didn’t worry me massively because I knew things were improving. Now I’m a bit like- argh!

I hope to God and the Universe that I’m doing the right thing.

Every little physical change I’m really aware of. Last night I had a tickly cough and thought ‘Oh no, not my lymph nodes again?!’ Then I went to bed, thought positive thoughts and feel tip top this morning. So panic over.
I don’t want to be like a scare-dy cat for the next three months. I want to feel confident and enjoy now…

Life is such a gamble. I would love assurances but no one has that do they?

Today I have been to the hospital to0 have my bloods done again in preparation for administering the denosumab injection tomorrow.
I also had a pleasant surprise today by receiving an appointment letter to see Dr Plowman this Friday regarding gamma knife treatment. That happened quickly. Let’s hope we have a better experience this time. Once I can get the brain tumours gone completely I will be really confident about beating this thing.
So for now I want to continue getting stronger and feeling fitter and more cleansed and treating this body and mind with the utmost respect. X

New beginnings…..

I’m sat in my room at the Zum Lowen in Duderstadt. We are once again living life to the full after a weekend being joined by our good friends from Ireland. Feeling tired but happy we got here late last night. We flew to Hannover and then drove to Duderstadt. We are so unlucky with the weather. It rained then snowed then blew a gale all the way here. Poor Pete hated the drive here especially with over 14km of roadworks! Apparently in two weeks it will be about 18 degrees and sunny. Typical. Let’s hope the next time we visit it is better.
After a brilliant nights sleep in one of my favourite beds I had a hearty Zum Lowen breakfast then headed to the clinic. Today I thought I was having the usual oncothermia, Newcastle disease virus, and an  interleukin 2 shot. Instead I had an infusion of nivolumab.

I knew I was having nivolumab on this particular visit but had no idea how it would be administered. It took about an hour and half to complete and there isn’t any side effects expected as it isn’t a chemo, it is a monoclonal antibody.
Now this is where it gets a bit technical. I don’t really understand it all and if you asked me I couldn’t explain it to you as I have a memory like a fish but the explanation is below of how it works and what it does.
Nivolumab works by blocking a protein called programmed cell death 1 (PD-1). Drugs which inhibit PD-1 may be able to treat a variety of cancers.

PD-1 is a protein on the surface of activated T cells. If another molecule, called programmed cell death 1 ligand 1 (PD-L1), binds to PD-1, the T cell dies or becomes docile. This is a way that the body regulates the immune system, to avoid an overreaction. Since many cancer cells make PD-L1, the cancer cells can disarm the T cells and inhibit them from attacking the tumor. Nivolumab blocks PD-L1 from binding to PD-1.
PD-1 blockers appear to free up the immune system only around the tumor, rather than more generally, which could mean they can have fewer side effects as well.[3]

Currently nivolumab is being made by Bristol Squibb Myers. I called them recently and asked them if they would provide me with nivolumab so that Prof Dalgliesh could administer it for me. They said no. Then Prof Dalgliesh contacted them and they said it wasn’t licensed forbreast CanSer. Oh well it was worth a try and would certainly have been much cheaper than us obtaining it here in Germany. However, when asking all the doctors I have seen in the UK what their thoughts were on nivolumab . I was pleased and surprised to be told go and have it and to put other treatments on hold. I have never been told this by an NHS doctor. I was worried about postponing starting eribulin as I know it should be effective treatment for me but Prof Harris said why put more toxicity in me especially when my bloods have been so low recently.

I had some bloods taken this morning and the lab here will check to see if my haemoglobin has improved enough for them to take plenty for my next few visits.

I have everything crossed that it’s good. It hopefully will be better than my last bloods that I had done ten days ago. They had already risen from 8.9 to 10.9 so fingers crossed once again.
For more info on nivolumab click the link. It will also give a link to current trials available.
http://www.cancer.gov/drugdictionary?cdrid=539733

What else is new? Other than eating my body weight in food I am keen to get back to exercising regularly when we get back and I think I am going to mix it up including rebounding, weights, yoga and more.
My skin has really been odd recently too. I have a rash like area of spots on my chin and round my nose that is itchy. I have great skin normally. I associate the chin region with hormonal issues so I am unsure what is going on…
My hair is slowly growing back and is so soft and fluffy. I am very impatient and really want it back now. The problem is the stripe down the middle of my head is still bald! I have a reverse Mohican that looks more obvious by the day! Haha…

Mum went home Saturday and it was really sad to see her go. The week flew by and we had such a laugh. She taught me to knit and we really got stuck in. The good thing is that the repetitive strain injury has now healed…haha. I’m good to start knitting again!

I have today emailed the secretary at the NHS. I am chasing up the gamma knife treatment at St Barts. I am very aware that Dr Plowman only has one MDT a month and I want to be featured so that I can have the procedure soon. I have re read a letter that his consultant sent to my hospital and it says that once I have had whole brain radiotherapy and there are no new metastasis and the current ones have improved and are stable that he would happily do the procedure on me. Well, based on last weeks scan he should be happy to proceed. As with the NHS and any other doctors you have to push for these things.

It’s weird. The last few months have been pretty up and down and the results so far have been really good. I get the feeling that for any kind of success it has to be hard and painful. Wouldn’t it be lovely that if this nivolumab, which apparently gives no side effects combined with dc therapy, actually works? Painless and effective…. Please please please…..

Now for an afternoon of chilling and reading….

Light and love. X

I’m damned if I do, damned if I don’t…..

It’s been a long week and as usual we are glad to be home especially as it’s only a week until Christmas!
Pete thinks it has been the hardest trip we had in Germany primarily because I was unwell for most of it. Nothing specific really other than suffering diarrhoea, nausea some days, totally unexplained. I think maybe due to anticipation and anxiety of what was lying ahead of me. I also had trouble taking my tablets, again due to my head stopping me. My appetite suffered some days and then I started treatment at Dr Seibunhuners which entailed infusions of artemesinin, DMSO, B17, and incorporating insulin using the insulin potentiated therapy.

Firstly my veins in my left arm are suffering and I feel every prick of the needle so much so at the moment. The DMSO stinks and I immediately wanted to throw up. Not very nice for anyone there. I calmed myself down and got on with it but to be honest that stuff does my head. It’s supposed to enhance the intake of treatment but boy, I really hate it. Pete isn’t a fan either as I smell of rotten cabbages for days. It’s like when you eat garlic it lingers for days and washing, spraying perfume doesn’t disguise it. I oozed cabbages.. Brilliant.

Whilst having the infusions and IPT I also had oncothermia like that at Dr Nesselhuts. It took much longer this particular day than it did the first time I visited.  I don’t like change and I was getting frustrated with the lack of consistency. Every clinic and hospital does things differently. It takes a lot of getting used to.

Prior to this we had spent a lovely weekend in Cologne, and although we have been to the Christmas markets there before, we believe they are the best in Germany. So classy, have so much to offer and a real delight. The food is immense and the atmosphere is second to none. I would highly recommend going.

Yesterday we got up early for the first appointment available with Professor Vogl for TACE. Guessing I was first on the list I assumed I would be finished earlier than normal and we could be driving back to the Eurotunnel to catch a late train to get home. Although we love it there Pete really needs to get back for the business and to earn money to pay for this treatment.

Because we wanted it to happen it didn’t. I waited for hours in a bed before they took me into theatre. They then got me ready for Prof Vogl and left me there on the table on my own with no one in sight for about twenty minutes. Despite knowing I am English and all speaking perfect English and having met me three times now almost all members of staff kept talking to me in German! It was driving me insane! This time the procedure really hurt. I felt the cut in my skin and the tube being pushed but no flub dub in my heart. So strange. The drugs they gave me made my head spin… Again it felt so inconsistent to the time before. Once I had rested for three hours had to have my CT scan before seeing the Prof and getting on our way. Well it’s the law of attraction isn’t it? We were sat there for hours and despite me asking to be seen so we could go home they just left us there. The CT scan took 1 minute. Speaking to the Prof took five minutes. Seriously, I was so frustrated. No matter whether you are a private patient spending thousands on every visit, it doesn’t seem to matter. I am still treated just the same. I expect more. That’s just me.
On looking at the site where the procedure was done I do have more cuts and bruising and discomfort this time. I don’t know why or what was different. I do know the Prof is very pleased with the results so far and has suggested one more TACE then we ablate or use LITT which is a laser version to get rid of the largest tumour in my right lung. Pete and I told him that it had already been ablated. He said it didn’t work…

Whilst at Dr Seibunhuners the day before in my head spinney state after having no sugar or food since the night before I got a call from Dr Lim at St Barts. I was told that my tumour sample had returned negative and also due to the positive results of my recent CT and MRI scans that I was no longer accepted on the trial for PDL1. I hate being put on the spot and in my state I didn’t really have much to respond with so once I gathered my thoughts I sent Dr Lim an email.

I basically expressed my confusion as that I simply couldn’t have waited two months to start treatment and had to have radiotherapy and something to reduce the cough and the growth in my lungs. I wondered why I wasn’t accepted based at the time I went to see them? I wanted to know what was I meant to do? The reply I got was could I go and see them… Seriously? I replied telling her my time and money was precious to me and it would so nice to be able to receive treatment in the UK without having to pay for it like we are at the moment. I reluctantly agreed to visit her and Prof Schmid today.

Following that I waited to see Dr Seibunhuiner who wasn’t free so we decided to leave. We met with friends in Frankfurt and it was just so lovely. But I started to feel flu like and aching in my hips and lower back. I had gone a funny colour of white and felt freezing cold. Pete took me home and got my rugged up in bed. I eventually warmed up then became really feverish. Now I always believe that these could be good signs that something is working, or at least happening inside me! The next morning I felt much better before going to see Prof Vogl.

So we belted it all the way to the Eurotunnel hoping to arrive by the skin of our teeth. We don’t make things for ourselves! We would have been fine had a car not set on fire closing our motorway! Argh… being calm we just sat there whilst the road was closed and then got back on our way. We somehow did make it to the train and then got back to Blighty. The journey in England was worse than the journey in Europe. Motorway slip roads were closed, there was so much traffic and this was at 11pm! Finally arriving in the early hours we got to bed and felt thankful to be home.

Pete got up early as usual eager to get things sorted in the office and I got up and got myself on a train to London. I did see Prof Schmid quite quickly but as I expected it was to tell me that I wasn’t going to be accepted on the trial. Pete thought they would be accepting me because surely they wouldn’t get me to go all the way there when they could have emailed me this information?! Don’t be silly. They just added insult to injury.
Pete and I are sure that immunotherapy and PDL1 and PD1 are really something that could be a game changer for triple negative. There have been great results on the studies and things are really looking up. The problem is to get it privately we are looking at £150,000!

Prof Schmid as lovely as he is, said that he believes that PDL1 could be more harmful to me than my current treatment, although he did seem very negative about TACE. He just believes in chemo and all the other pharma type stuff. It’s to be expected really. I can keep in touch and there may be something that will come up for me in the end. But it was made clear that the current treatment I am on will one day stop working like all other treatments. He also said I can’t keep having radiotherapy so if the brain tumours grow I would be put on medication. BUT to stay on the positive side as things are currently working.

I may sound a bit down. This is due to a bit of tiredness and mixed feelings. Female hormones don’t help either. I’m feeling very hormonal. I actually cried when I came out of the theatre yesterday. I felt like a second class citizen. No one really cares. They treat me like a lump of meat. They don’t care about the outcome or my life or the impact it has. I felt all the effort all the people like me are going to, to extend their lives and to be the miracle they hope they can be, and no one really cares. Prof Vogl barely makes eye contact and doesn’t give much time. But that’s him. To be honest I feel that’s what most cancer doctors are like. They forget you in a flash, they want your money and what they say goes. The only one I think that does actually care about me currently is Professor Harris. He genuinely seems interested in me and my plans for future treatment. I still have trouble convincing people to help me with further treatment if it isn’t simply chemo and I really get the feeling that time is running out and treatment is limited. They don’t want to hurt my feelings but I can see it.

A saying came to mind whilst away and I emailed it to Dr Lim, ‘I’m damned if I do and damned if I don’t’. I just don’t seem to get the luck. If I waited to progress and get worse then I could be in a very sickly state, near death maybe. So I proceed with getting better and then I am told I can’t have treatment because I am doing well. I am over the moon that I am doing well. But we just needed a bit of help and some time away from travelling abroad and costing us so much in finances and upheaval. Also making changes to treatment really keeps canSer on it’s toes. But I am grateful that I can go abroad. I thank my blessings every day that I can. I just wish it was better for Pete. He didn’t sign up for this. I do sometimes wish things could be different.

This blog isn’t currently full of Christmas cheer but it will be! It’s not like I am sleep deprived so I apologise… We had a lot of brilliant sleep. I will give that to Germany. Their beds and duvets are the best! 😀

It’s good to be home even if it is brief. We need to organise next month’s travel but right now I have a kitty on my lap purring whilst I type. I intend on getting festive watching old Christmas movies and just want to plan for 2015 which is going to be equally good if not better than the previous 4 years!

I am going to make some tasty vegetarian food, I am sure Pete could do with avoiding sausages and pork for a few days; he must have the meat sweats! Tomorrow is another day and if we get to see it then we are blessed.

Light and love. X

PDL1 negative….

The weekend is looking exciting with German Christmas markets to enjoy. The only issue is a storm heading in to cologne.. Boo…
I have received confimration from St Barts that my tumour sample does not express the protein for pdl1, however they are still interested in me going to see them next Thursday as I may be able to get on the trial anyway.
I can’t decide if I feel sad or happy? I looked at the info online and it isn’t necessary a bad thing that I may not express the protein. It’s so complicated it makes my brain burst but all I know is that it is still potentially a really good option. What bothers me a bit though is that if I get all the way to St Barts next week to be told no. I don’t relish in the thought of getting up at the crack of dawn, fighting for a seat on the commuter train, if it arrives on time, waiting for ages to be seen at the hospital to then be told no. They may not find quite such a happy go lucky girl if that doesn’t happen. But I guess if I do make the effort I can plead with them and try to change their mind.
They have asked for copies of my scans and reports which the Churchill have done for them.
I hope they don’t just read the summary of the reports which never really summarises what the prof tells me.
Who knows? This one is on the lap of the gods… What will be will be and then I will make my plan based on the outcome.
For now I know I have a few days of intense treatment and hope that my scan after this will be even better than last weeks.
Let’s hope if they are down by 50% then we can be down by another 25% or more. The largest tumour in my lung is now less than 3cm and the lymph nodes are less than a 1cm as are the ones in my brain. Tiny…. Tiny, tiny,tiny.
Today we hope to dodge a storm that is descending on Germany and make our way to Cologne.
We have also been sent some really interesting information from our friend in Australia regarding timings of treatments and immunotherapy. He has suggested I have a certain blood test three times per week prior to the trial drug being administered. I will have to speak to all the doctors regarding this but mostly the ones at St Barts as this could really assist their studies.
I am intrigued to know if success is due not to just the treatment but when a person responds to it.. It could solve the questions as to why a year ago I was practically clear of canSer but despite all the efforts this year it has increased and spread?
Yesterday I got a bit down and was questioning my body.
I don’t understand the why my body is anaemic and why my my platelets are so high making my blood sticky and therefore a risk of thrombosis?
I had a chat with a doctor from the care oncology clinic and they’re not too concerned as to the levels and said they are not that bad… Ok that’s good.
Regarding the anaemia though; I looked at when the levels started changing and it was around the time I stopped juicing. In my juices I always had a high level of vitamin C and green powders. This could be one reason why my blood is less oxygenated and also why I am losing iron. Or could it be the enemas? It’s time to start monitoring now I introduce these elements and changes into my life.

I am also intrigued as to why the tumour markers are dropping.. I mean this is great isn’t it? But what am I doing to make this happen? And if I get below the normal point does that mean that canSer will stop growing and spreading?

Sometimes having too much knowledge is a hindrance. It is for me anyway. Ignorance is bliss!

Today my face looks puffy again. I think so anyway. My appetite has changed and I feel full and fat. My weight however was the same as normal when I went to hospital on Tuesday. It’s so strange the effects of treatment and medication on my body.

Anyway happy Friday everyone and keep warm and stay safe in the crazy weather we are all having.

Xx

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

Good news re gamma knife and now the next step…

I waited patiently Tuesday with no reply from Dr Oliveros regarding the result of the MDT in London. That was a first for me! By Wednesday I was getting a little worried but for once didn’t feel the need to hound the department.
My patience paid off as I got the call I was waiting for. Dr Oliveros said that Dr Plummer at St Bart’s had agreed to give me the gamma knife treatment under the NHS! Result!

She said that my notes were being sent over to him and I should hear from him within two weeks… Two weeks? Ok not to panic. I kinda thought I would be hearing sooner than that. She said if I hadn’t heard by then to contact her and she will chase up.

We discussed  the steroids I am taking and she said I could reduce right down after five days.. Good. I feel very bizarre on them. Or maybe it’s the concoction of codeine, paracetemol and steroids. The cough is my main annoyance at the moment.

She asked how my appointment went with Prof Harris and she could see that I had consented to chemo.
She seems like a really nice doctor.

What she doesn’t know is that in the meantime another canSer friend has emailed me and told me about nano knife. A private treatment available here in the UK. My friend had given me the contact details and I didn’t hesitate to call. The secretary adviced me to get a copy of my report and send to Professor Leen at the Princess Grace hospital so she could show him before he goes on holiday.

Last night I had a Skype chat with some friends from New Zealand who now live in Frankfurt. They gave me invaluable advice on treatments such as TACE as well as advising me on IPT with a Dr Seibenhuner. It seems quite intense but if I can coordinate everything it could be a really great way to ‘go hard’ combining all treatments including DC therapy with Dr Nesselhut. I feel very lucky but now have to try to coordinate as much as possible in the diary.They advised me that combining such things as radiation with other treatments releases antigens and can work synergistically.

Dr Nesselhut mentioned having PDT- photodynamic therapy and mentioned contacting Julian Kenyon here in the UK. I have done that today. It’s all worth investigating.

So now it’s back to waiting but also deciding our next step. I won’t rule out chemo as I am better off having something that I know could mop up the cells. I just want to consider the side effects such as numbness in my hands.

So that’s the update for now….

I didn’t win the lottery…. No surprise there then!

I didn’t win the lottery….No surprise there then. My luck hasn’t changed. Or has it?

It has been a weekend of tears, and love and support and so many emotions I don’t no where to begin. Pete and I decided that we would have a weekend of not getting out of bed. That lasted all of about 2 minutes. As usual we couldn’t help ourselves especially as the weather ended up being really lovely and I always feel that we should at least get out in the day light whilst the weather permits. We did have plenty of time to relax and although sleep was a bit a hit and miss we both felt relaxed. I had one good night one bad but I was pleased that I got any. I have been walking around in a blur. Now this could be down to the fact I am on a cocktail of steroids and also codeine, in the hope that my headaches will pass as well as the cough. Interestingly the cough is annoying me more.

This morning Pete and I went to the hospital this time to collect my CT scan results. As Pete called it, Part Deux.
I don’t know how I thought it would go but I didn’t have any feelings either way about it. I think that I thought things couldn’t really get any worse. And they haven’t really.

The good news is there are no new ones in my bones or abdomen and that the ones that are in my lymph nodes and lungs are actually a mixed bag.

The ones that have been blasted with radiofrequency have actually got smaller and that seems to be looking good.
The ones in my left lung have stayed the same.

Then there are new ones appearing albeit very small in my lung. There is also pericardial effusion around my heart.
The right hilar lymph node is necrotic but they cannot tell if that is because it is growing quickly. In fact all of the ones in my lymph nodes are a bit bigger.

Prof Harris has suggested that I get the gamma knife treatment all sorted and then that should make that better. There is of course no way of knowing if that means they won’t come back but he suspects we can keep on top of it. He does think we should opt for a systemic treatment like chemo but he said is up to me. He suggested getting started on something like carboplatin and gemcetibine and we thought starting the consent forms was the best way to go especially as it will take about three weeks to organise and by then my brain treatment should be sorted.

In the meantime Pete and I already have a plan hatched to go to Frankfurt for TACE by Prof Vogl. Since getting home I have had a stream of emails from my Europeans friends and they have been advising me that timing it with treatments to Dr Nesselhut would be highly synergistic as well combining it with insulin potentiated therapy. I think this could be a really good route to take. We just need to organise that now too.

As expected I am still waiting for results from the MDT that occurred today at St Barts. We told Prof Harris that Dr Oliveros had said we can only have it done if there are three tumours of less. He couldn’t believe it. Prof Harris has changed and I believe it is because he has seen so many changes in the cancer world. He is so much more open and friendly now too.

As much as I don’t relish going on chemo it is definitely something I would do but I will lean for TACE first. I don’t want to spend any more money but I do want to try other things and I do want to give it my all.

I am bit disappointed that I haven’t yet had a call but I trust that Dr Oliveros will call when the time is right.

I suggested to Prof Harris about a trial that is happening at St Bart’s that my friend has told me about. It is using immunotherapy and has been raved about apparently. He thinks I won’t be able to get on it because I have already had immunotherapy but he said it is worth a try.

I think I will continue with the immunotherapy at the London Clinic. I still think that things are going well in that department. The thing is if these brain tumours hadn’t appeared it would still be going in the right direction… sort of…

I have been cancelling clients today and been making a plan for taking more time for myself… The thing is until I get an answer from Dr Oliveros I still feel aloof.

I felt really loved today at hospital. Pete was surprised at what staff in the pharmacy and the nurses who work with Prof Harris were all like with me. The thing is I have been going there a long time. They all bent backwards for me and made my life as easy as possible. I am feeling really loved.

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