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.


Progress for radiotherapy…

I have had some progress. Yesterday I was booked to see Prof Harris for my usual clinic appointment. On Monday, eager as ever I emailed all the doctors secretaries and asked about when I would be seen for radiotherapy. I was told to call the radiotherapy department. You don’t have to ask me twice. I got straight through to the lovely lady who said she had found my paper work and asked how long I had been waiting. I told her a month, true and a little bit untrue. She called me and asked if I could go in the very next day, so yesterday. Yes! It worked out perfectly combining it with Prof Harris; Two birds, one stone.

I told reception on my arrival that I was going to radiotherapy after seeing the Prof. They saw me almost immediately.

Prof was lovely. As usual. He actually said he thought going to Prof Vogl was a great idea. This surprised me a bit as I got the feeling he didn’t approve. We advised him that Prof Vogl had advised me to take capecitabine again on a very lose. He said that I should taking it immediately especially as I am going to be on radiotherapy because it can affect the results. Really? He also said it is pointless taking it when I had responded on it then it stopped working. Blimey…That was lucky then. I have stopped taking it.

He asked about me cough and I told him that I was full of snot (too much information?) and stuff. He said it was difficult to tell if they lymph nodes were improving. I also told him that my side was in agony and he remembered how it was six months ago.

We went straight from there to radiotherapy. The male nurse was nice albeit a little bit of a jobs worth and when he told us the dates for having ten days worth of treatment our hearts sank.The dates overlapped the dates for Germany to see Prof Vogl and Dr Nesselhut. Bugger…

We told the nurse and he insisted on calling Dr Oliveros. We tried to explain that it wouldn’t matter we would move the Germany dates but he said he felt he should tell her anyway! How irritating..The nurse then started saying it might mean we can’t proceed with doing the mask making and ct scan if we have to put it off! Argh!!! Seriously how annoying was this man?

We waited and decided whatever the outcome we wouldn’t be going home without the mask being made.
The nurse walked in and said that Dr Oliveros had decided giving me twice the dose over a period of five days would be just as good. What? Wow! This was even better than I expected. I didn’t want to go hospital for ten days anyway being trapped under the mask.. This was a right bonus!

Whoop! So, on we got with making the mask. This is where the male nurse actually ended up being lovely. He didn’t mean to stress us out and actually was such a kind a gentle man (Pete thinks a bit creepy! Haha). He explained what he was going to do and how the mask would feel; hot then cold and I would be in it for about 8 minutes. I was very concerned with feeling like I wanted to move and also wanting to cough. He put on calming spa like music and then stroked the contours of my face and spoke really calmly. Now as a beauty therapist this was brilliant. It was highly relaxing and I really appreciated his concern and care. What a lovely guy. He kept reassuring me and saying I was doing really well.

And that was it! The mask was made. I then had to go and have a ct scan with the mask on. This time the mask was a bit tighter and I was worried again that I would feel the urge to cough. But I held it together. Thankfully.

Overall it was a really good day. I have dates starting from tomorrow for radiotherapy and then I can go to Germany for treatment.

I have been advised about the side effects of radiotherapy; such as hair loss and dry skin, headaches and tiredness. Prof Harris said I would stay on steroids for a short while then the radiotherapy should work over a six week period. I will be scanned in December.

I am not sure how quickly hair falls out with radiotherapy but I guess I will find out soon enough! If at all…
So tomorrow it starts… I feel quite high spirited. I am feeling pretty well.

Let’s keep that going…


Hair No More… Third Time Lucky….

Monday already! The weekend was good… I went to watch England play rugby with my Bear and two of our friends. It was full of banter and laughter. Just what we both needed after a challenging week. To honest I didn’t think I would be well enough as I felt pretty rubbish Friday. I suppose everything had caught up with me.

My hair has been driving me mad. Every time I move I can feel it fluffing my face as it slowly fell out. My pillow was hairy and when I had a little cat nap on the snug sofa I was surprised as to how much hair was on the cushion…. Been there before but it is so annoyingly itchy. I didn’t want to get rid of my hair too soon though because if I was going to the rugby I wanted to have hair. Luckily I felt fine and looked ok too.

Sunday we got on with Sunday things and got to see our friend on her birthday. I felt pretty organised getting things done and not being under any pressure. Then Bear and I had hours in front of the box. TV is great leading up to Christmas with all the reality shows. I know it’s not great intellectual viewing but it’s great to take our minds off things.

The problem was as the day wore I started feel rough again. I was shaky… Again. I just don’t know why. My appetite isn’t right either. To be honest we both feel a bit under nourished at the moment. When I don’t really feel like eating a full meal we just make do, so I am definitely not getting as much green veg inside of me. I figure I have to just chill out and go with the flow. Everything will work itself out and forcing things just makes me feel like I am not achieving what I should. But being calm and happy at the moment is more important than having spirulina and juices.

I suppose the main event of the day was that Bear shaved my hair off me.
Third time lucky. I don’t think it gets any easier for him but as he says he would rather shave my hair off than not have me around. My scalp is still a bit itchy as it has some bumps and spots on probably from the radiotherapy sensitivity. I have been using cream on it ever since to soothe and repair it.


This week we have made a decision to cleanse our systems and try to be kind to ourselves. This means plenty of water, green tea, homemade soups and things that don’t aggravate us. Fresh fish and spinach, and hearty tangibles etc…We shall see how well that goes!

Today I had a Skype session with a spiritual guide who was recommended to me by my friend. I really felt I needed someone to talk to and perhaps lead back to connecting with my emotional and spiritual side. He was great; really friendly, and I felt so calm afterwards. He did some exercises with such as; letting go, God / universe is everything, and choosing five people I look up to and their qualities I admire. I won’t go into detail how those exercises went but I did feel better…

I have also been catching up on the Deepak Chopra meditation challenge and have meditated 3 times today. For the first this morning I actually felt like I really meditated and didn’t just think all the way through. That’s been a while. Actually deep breathing can be quite painful for me still as my ribs are very sore, but I think they are slowly getting better.

It’s so weird that I am typing this and its 5pm. I am not ready for it. It isn’t cold so doesn’t feel like November… Christmas is round the corner and I need to organised!

I have a relatively relaxing week ahead… I’m looking forward to it. I am going to introduce exercise in some form. I have to. I am so unfit and I can’t allow myself to get sicker. Any kind of exercise, even light, will actually help tiredness from chemo and radiotherapy. I’ll start tomorrow. 🙂

For now I have Friends on the TV and I am going to have a green tea…..

Four days of intense treatment……

The last few days have been intense to say the least. We always knew it was going to be the hardest yet and it has been in many ways. We left home at 4am on Monday morning for our flight to Frankfurt. It’s mental how any people are up and on the roads at that time of day!

I had sort of planned everything as best I could but still didn’t really know what was going to happen. We got our hire car and headed to the hotel. Thankfully our room was ready… Cool everything was going better than expected.
I had an appointment booked at 1.30pm with Dr Seibenhuner which can I say translates to Dr Seven Chickens!

Pahahah! Love it… You gotta laugh when you can.

We were pleasantly surprised when we arrived at his clinic that it actually resembles a clinic; very clean, professional and well normal.

We met with the doctor, who was a really nice guy.

I showed my RGCC blood test results so that he could see what things should work against the canSer I have. We spoke about IPT, insulin potentiated therapy which is promoted as a “kinder, gentler” approach to chemotherapy, with “little to none of the negative side effects of chemotherapy.” It purports to use about a tenth of the usual dose of cancer treatment medicine. The effect of the chemotherapy is claimed to be magnified or potentiated by the use of insulin, which lowers the blood sugar. People who offer this treatment claim that insulin “opens up” the receptors on cancer cells so that more chemotherapy can get in.  The patient reports to an IPT clinic after having had nothing to eat or drink other than water for 6 to 8 hours. Intravenous (IV) fluids are started, and the patient is given a dose of insulin based on his or her body weight. For people with cancer, low doses of chemotherapy drugs are given a few minutes later so that they reach the bloodstream after the insulin has started to lower the patient’s blood sugar. This is called the “therapeutic moment” by some IPT providers.

At this point, the patient usually has some symptoms of low blood sugar (hypoglycemia). These can be quite severe, especially the first time, because people can respond to a standard dose of insulin quite differently. The IV is switched to a high-sugar solution to raise the blood sugar. After the symptoms of low blood sugar begin to improve, the patient may be given food to raise the blood sugar further. During this process, the blood sugar may be checked by finger stick.

We then discussed possible drugs/ infusions to use with the IPT. Based on my RGCC blood results we discussed B17, which is present in apricot kernels and illegal to use in the UK, artemisinin, which I take orally daily, DMSO, which has been recommended to me recently to enhance everything I take in the system, plus a few other things such as potassium and magnesium. As well as this I was to have local hyperthermia on my brain and my chest. I can’t think if there was anything else. My eyes were wide and I was in a bit of a state anyway. Dr Seibenhuner said let’s get started… There and then. Wow…. This was amazing…

Of course cost was running through my mind. Pete dealt with that side of things and was surprised as to how much it was. It was no way near as much as what we were used to paying… So that was a bonus.
Straight away they jacked me up to infusions, insulin injections and the hyperthermia machine. I was scared that my blood sugars would go so low I would go into shock. I was apprehensive about how all the infusions would make me feel. They assured me I should feel fine. They took blood samples and said they were to be sent away for testing to see if my cells did something?! To be honest I have no idea I just know I have results to come back. Hope they are good.

Two hours went and I laid there and got hotter and hotter. I didn’t feel any more shaky than I already was. My blood pressure was monitored regularly. I don’t suffer high or low blood pressure but that day my blood pressure was ski high. They also tested my blood sugar a million times. My finger tips are totally punctured. The interesting part was it started at 115 and they hoped it would drop to half that. But during the whole two hours it would only go as low as 89. I was worried that wasn’t low enough and that it hadn’t worked. I was assured that the reduction was fine. We asked why my blood sugars were so high. They think it could be stress… No really?!!! My body was vibrating from everything… The other thing is I stank. They hadn’t told me that one of the infusions stinks… Honestly I stank of rotting flowers and cabbages for days. I couldn’t smell it. Pete said that every time he walked in to the room all he could smell was me.. Brilliant. I am a smelly nelly. Boo!
So that was a success..

Day two- Professor Vogl and TACE

Having had this once I was nervous again. We arrived and I was taken straight into have an MRI. Pete went on his way for the afternoon. He had work to do but sadly money is the main objective to all these clinics. Despite having paid in advance and online the administrators hadn’t bothered to check and demanded Pete prove he had paid. Poor Pete spent hours getting his bank manager to show proof and make phone calls and more.. Unbelievable. Are CanSer patients that unreliable?

All the while I am oblivious to this administrational nightmare.

Prof Vogl sauntered into the operation theatre where I was laid like a piece of meat waiting for him. I was hooked up to the ct scanner and my other images showed up too. Prof said that there was good news. The tumours in my right lung have reduced by about 20 per cent. Wow… Really? He said the lymph nodes not so much.

He got started with the procedure and the worst part really is the anaesthetic injection and the little knick into my groin artery. There is one particular male nurse who preps me and is present the whole time and he always gives me a rub on the shoulder to soothe my pain. I watched on the screen as the tube goes through my heart in my lung area. The feeling in my heart is so bizarre. He did say my heart had reduced since last time too, so that means the fluid has reduced. I told him my cough has gone and told him about my other treatments that I had, but to be honest he doesn’t seem to care.

That’s the only thing. Every clinic and doctor gives such different standards of service. Once the procedure finished I had to lie there for three hours to recover. I don’t know what they give, although I hope I will sleep and I never do, but when I finally got up my pupils were massively dilated. Brilliant, more drugs to make feel detached.

I sat then for about an hour to have another ct scan to make sure I wasn’t bleeding to death and then I went to see the Prof. He showed me images from my first visit and that day and I could see the reduction in my right lung. I couldn’t see the lymph nodes. He said the ones in my left lung are so small not to worry about them.

Pete and I were concerned as to how this treatment would be going. How many times do we need to go and how is it going to get rid of completely? In my addled state I was unsure what the benefit of that treatment was over chemo. Obviously, normal chemo kills all cells. TACE targets the specific areas and the side effects are minimal. I have to be honest I saw the chemo shoot through my lungs on the ct screen and then I am walking around feeling fine. I can handle that over systemic chemo.

Prof said in his limited fashion that we should continue making the right lung and lymph smaller and then he thinks we should ablate them with RFA or Laser treatment that he offers. Ok right. I think if I have any questions I will have to email. It’s like getting blood out of a stone.

We hot footed it out there with mixed feelings. I should be over the moon that there has been such success in only one month! But in my drugged up body and the concern for just getting to the next destination all happiness is taken away. You can’t really feel happy when you are being given news by a cold blooded heart less doctor. There is no emotion in some Germans!

By now it’s late afternoon on Tuesday. We jumped in our trusty hire steed and made a three hour journey to what I call my German home, Duderstadt.

There has been no daylight since we got here. That has made it worse. I feel like I am walking around in the dark and it’s not very uplifting or inspiring. My body feels different every day. I’m reducing the steroids but my face is bloated now and I have puffy eyes. My scalp and forehead are itchy and my hair has started falling out from the radiotherapy, God darn it! I really hoped it wouldn’t but I am gutted. I know it’s not the end of the world but with a fat face I don’t look good. I have aged with worry and have more wrinkles than before. I rocked the bald look years ago when I looked healthy. I do not look healthy. My mind is a mess as is my body. I’m a wreck!

We arrived at our usual hotel, the Zum Lowen and were welcomed to the first room we ever stayed in. Bliss! The beds are out of this world.. The bed covers, I have to have, are silky smooth and despite knowing I might not sleep very well, because I haven’t lately, I didn’t care. I knew lying in this heavenly bed would be just what Pete and I needed. I wasn’t disappointed..

Day three- I got up yesterday with plenty of time before my first appointment at Dr Nesselhuts. I was having hyperthermia and more infusions. I decided to catch up on meditation and emails. Pete had lots of work to do so I made sure I kept quiet. I had a great morning. Off I went for my treatments. Putting needles in my veins is really getting to me now. I have great veins but my good one is starting to look a mess.

I came back to the hotel and chilled even more. I felt all blurry.. My puffiness is getting right on my nerves. Pete and I try to be as normal as possible but really I just feel shaky the whole time. I’m worried it’s my blood sugars or is the drugs or is it all of it?

Another great night in the heavenly bed. But I still wake up thinking half way through the night. I can’t switch off my head but I’m not sure what I am really thinking about. I woke with aching ribs and a mild headache. The first headache in a while. I put the rib aches down to TACE. I remember feeling a bit achey last time from that chemo. The headache I hoped would be nothing. I haven’t taken any pain relief and I feel just fine at present.

Day four- I’m up packed and ready to check out. I have another session of infusions and hyperthermia then to see Dr Nesslehut. I’ve booked the earliest appointment possible as we have to get back to Frankfurt for our flight. Bloody pressure! I know I could make it easier by staying an extra day but we have to get back. Pete has important work and that’s how we make the money to pay for these crazy adventures.

I feel ok. I’m shaky again and a little less puffy- yay! But I still feel like I am living in a parallel world. When I lay in the ward after TACE it was like being in a movie where a captive is taken and is being tested upon. Foreign language banding about and being prodded, poked and given, well it could be anything?! It does take the feeling of control away somewhat.

Pete just goes with the flow.

I saw Dr Nesselhut and we discussed future treatment options. He discussed ipilimumab, a drug that one of my friends had recommended. I didn’t even need to bring it up as Dr Nesselhut did.

Ipilimumab belongs to a group of cancer drugs known as monoclonal antibodies. Monoclonal antibodies are sometimes called targeted therapies because they work by ‘targeting’ specific proteins (receptors) on the surface of cells. Ipilimumab is a bit different because it works by attaching itself to normal immune cells. This changes the way these cells work and helps the immune system destroy cancer cells. Apparently it can be deathly and is very expensive, but if I go for it combined with CD80 then it could really do the trick.

I can’t remember the facts on CD80 but it is something to do with T regs. Honestly you need a degree in science. Ok so there is a plan for the future. We skipped out of there and drove like the wind back to Frankfurt dodging awful car accident after another. I don’t know how we did it but we got to the airport with hours to spare til our flight. Being cheeky we asked the check in desk if we could get on a earlier flight… Yes!

Boom we got back to Heathrow and then home a few hours earlier than expected and it made all the difference. We were in bed by ten and had unpacked and prepared for work today.

It’s amazing to be back even if I am walking around with niggles, aches, pains and a hazy head. Once I have done some admin I will meditate and really take some time this afternoon to just BE…

Pete squeezed me as hard as he could throughout the noisy rainy night and we woke up thinking our bed is just as good as the heavenly bed at the Zum Lowen. There’s no place like home. X

Treatment number three done….

I’m already back from radiotherapy number three.

Yes, times flies. I started last Thursday. Pete has been taking me to the appointments and to be expected I was really nervous for my first one. Things didn’t go quite to plan when we got the hospital either. As we pulled into a parking space, driving our 4 x 4 vehicle mounting a curb we heard a loud hissing noise. Nooooooo. A flat tyre. Pete said he would get it sorted whilst i went and checked in. Sadly for him it wasn’t quite that simple what with all these new fandangle cars. He couldn’t simply 0put on the spare he had to reset the on board computer and so on… I felt so bad for hm. He really wanted to come in with me to calm me down and there he was having to call out the RAC to get them to sort us out. It didn’t matter to me. I was called in and on when the mask. The bit I was dreading was the fear of wanting to cough and being under the mask for so long. It took about 10-15 minutes and I could feel my heart rate increasing. It was hard to know when the radiotherapy was actually happening too. But it was painless and I got through it. Simple.

The next day I was even more nervous. Mainly through the anticipation of it all. I have been desperately trying to get rid of the cough and cold. To top it off my ribs that had been hurting from over coughing and that morning doing a normal cough I heard a great big pop in my ribs. I was in agony. Oh bugger not more pain.

There was an hour delay on this particular day and I was getting myself in a tiz waz. I don’t know why. It’s silly really. And it was silly because this time they admitted they have problems with the machine the day before and it shouldn’t have taken as long. It only took about 5 minutes today. Wow, I can handle that.

So Pete and I left 2 hours earlier this morning to ensure we arrived on time. Morning traffic is a nightmare and it took us about an hour to get there. Not bad really. They actually saw me early and I was in and out in flash. Hence why I am now back home typing this.

The weekend was a mixed bag. I have been advised I should feel worse before I feel better. So far I have continued taking the same amount of steroids. I haven’t had any problems with headaches. Weird. Saturday however was an odd day.

I took my morning tablets a combination of medication and supplements. We went to the supermarket then I had a huge urge to vomit. It wouldn’t pass and I had to be sick in Tesco’s’ car park. Classy. I must have looked like I had a hangover from the night before. If only.

We came home and Pete was cooking us a lovely brunch and I was really hungry, yet had to be sick again. I always think it’s something I have ingested and immediately think the drugs/supplements, but then Pete suggested it is the radiotherapy side effects. I had quite a lot of sickness episodes when we were on holiday in France, before I knew I had the brain tumours.

I ate, felt great but then my condition declined as the day wore on. I felt shaky, drained, I had gone a funny colour and decided that I should feel sorry for myself on the sofa. I couldn’t sleep but felt rotten.

Yesterday was a different story. I slept really well. We got up and had breakfast and did the usual morning stuff. I didn’t feel sick at all. We went out and I had a lovely morning seeing my step son and doing a spot of shopping. Such a difference a day makes. One thing I do constantly feel is sketchy and frantic and it makes me shake. It does improve as the day wears on but I think that has to be the drugs.

Last Friday I had a call from a consultant at St Barts. I have been referred for a trial there regarding PDL1. A friend of mine had mentioned it and I decided to push to see if I am eligible. I didn’t expect them to be quite so fast moving at this stage. I told the consultant that Pete and I could visit to talk about it later in November when we had some free time and after Germany. She called and said that they needed to test my tumour sample, which the Churchill hospital still has from four years from my original surgery. But in order to do that I need to sign a consent form. I did try to blag it and say that I could do it by email. No way, Jose. That didn’t cut it. So she has asked to me go to down to Professor Schmids clinic on Wednesday morning. I had explained that i have radiotherapy in oxford and its very time restrictive getting here, there and everywhere. But she insisted and said I wouldn’t have to discuss anything, I could go back with Pete another time but let’s get the ball rolling with the tumour sample to see if I am actually eligible for the trial as these things take a few weeks. I totally agree with her but the logistics of everything seem crazy! So I’m booked for Wednesday at 10am in London. I have to get back to oxford for my late afternoon appointment for my very last radiotherapy session. I’m sure I will do it. Well I just have to. I have to find out if this trial is any good. It could actually mean not having to go to Nesselhut in the future. I will provide more on this trial when I have it.

As per usual it’s all go. Life is never easy. So what am I going to do with the rest of my day and time?
I have a lot to organise still. My friends are hosting the charity ball at the end of this month for my chosen charities; Breakthrough Breast Cancer and The Cancer Vaccine Institute and even though are doing most of the work we still have spaces left and things need to be completed for the auction.

If you like to attend, the ball is being held on Friday 21st November at Caswell House, Oxfordshire. The theme is Venetian Masquerade Ball. The costs of the tickets are £100 per person and so much of it is going straight to the charities. The suppliers have been amazingly generous. It will be night of glitz and glamour. If you are interested in finding out more and booking tickets please contact me on; glowtherapy@live.co.uk


Other than that I still have to focus on getting well and that includes doing my normal inhalations and nebuliser and more. I haven’t quite got back into exercise and know the importance of that. I just have to find the motivation. I also need to get back into meditation. Today Deepak Chopra starts another 21 day challenge on the Energy of Attraction. If you would like to join here is the link : https://www.facebook.com/ChopraMeditation

Life stills very manic to me and I am not quite the girl I was. I have lots to look forward to though socially and treatment wise and just have to get used to living a bit out of my comfort zone for a while.I do feel positive yet I am a little confused if I am doing the right thing. I can’t decide if the drugs and supplements are right for me. Until I stop taking steroids I don’t think I can answer those questions.

I have adopted the ketogenic diet now. I feel at ease with it. It went against the grain because of all the meat included but I do feel I need to make sure I don’t lose weight. I worked out my BMR and the number of carbs, protein and fats I am to consume. It’s a bit of a science but I have to try. If you would like any information Patricia Daly is brilliant and there is also an ebook I work from with 2 weeks worth of meal plans available.

I have been thinking, ‘What was I doing differently when the tumours almost disappeared last year?

I know I was on dc therapy monthly and I had been using Capecitabine, but what other things I was taking that are different to now. How did it work then but then stopped?  It has to be something I did. I can make it go away again.
Luckily for me the cough is now going. That means the cold is going too. I haven’t coughed through the night for a few nights. This means the lymph nodes must be improving. Prof Vogl said it would take two weeks from my first treatment with him for this to happen. Weirdly it was two weeks to the day that I stopped coughing. I wonder if the cough would have subsided sooner had I not had a cough and cold. This is a really positive sign. It gives me so much hope and now I can’t wait to find out from my next CT scan what is going on in there.

Treatment number four tomorrow afternoon…..

Now what is it I have to do?…..Space cadet. X