Gamma Knife an option?

Friday morning Bear and I went to London to see the consultant regarding gamma knife. I’ve been there before and in typical St Bart’s style my MRI images had not been received. We did however see the consultant who I really like. He, much like the rest of the medical profession, seemed to be in a rush and we were ushered out within five minutes after waiting for nearly two hours and travelling two hours to get there!?

Luckily I had the written summary of my brain scans on my phone. He seemed happy that there had been substantial reduction and that there had not been any further tumours pop up and that I was no longer on steroids and didn’t show any symptoms. He said ‘they’ would discuss me at their next MDT then if I were to have gamma knife then it would be an early start, like I care?!

I got home and looked up emails I had been sent and noticed one from the secretary at the gamma knife centre. She had said there is an MDT on the first and third Monday of every month. That’s today! I hope they have sorted all my images out now and that was discussed today. I really want to have those tumours blasted! I am not loving the process involved, but then who does? Pete sent me the details of how it all works. Sometimes ignorance is bliss. Knowing exactly how they do it doesn’t fill me with joy!

I had an email this morning to say I will be informed when the consultant has made a decision. Okay……
Whilst in London we wandered down to St Paul’s cathedral to be met with road closures and many people on the side of the road… and the Queens car! Then we spotted her going into the cathedral! Eek! I saw the Queen! Haha…
This weekend we headed to the coast to visit my mum. We spoiled her rotten for Mothering Sunday. We took a long walk on the beach, spent time laughing and breathing in the fresh sea air. We made mum an afternoon tea en par with the Ritz, if not better!

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I had cupcakes made with MUM on them and a bag full of presents that I had made for her including a photo album of our memories in the past seven years. Sunday, we went for a lovely breakfast at a beach restaurant and then sadly had to say good bye. It’s never long enough….

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Back to the week ahead and there’s not much going on except the usual routine and exercise and more household clear outs. I am loving clearing out the house, although it still feels like every cupboard is bursting at the seams! We have way too much …stuff.

Mum helped me cast on yesterday so I am on my way to knitting another something special for someone special, although without my mum’s help, it could take a long while!
There’s a lot to look forward to in the next few months and time is flying. I am feeling good and hope it continues. My hair still looks odd with a bald patch but that’s the least of my worries. As is the red, itchy rash like thing on my chin and round my nose.

My blood results arrived today and it seems that my haemoglobin, platelets, red cells, and white cells, well almost everything, is low. Prof Harris says it isn’t anything diet, tablets or any treatment can change right now and it’s not bad enough for a transfusion to be required. I have sent a copy to Nesselhut for him to tell me what he thinks. Well if it’s all low I am not feeling out of breath or light headed, so that’s good.

Here’s hoping I hear from St Barts tomorrow about the gamma knife treatment. Fingers crossed….

Four days left…

I’ve had a lovely morning so far… I’ve done my morning rituals best I can whilst being away from home. Coffee enema, nebuliser, taken all meds and supps and more.

I am feeling pretty good. I am still avoiding green juices however the last few days I had an epiphany. In the place of juice I had been having bicarbonate of soda, lemon and olive oil water. Then one evening in St Tropez I felt overcome with nausea. Not very classy running to the toilets and throwing up!

Then I realised I bought a bottle of apple cider vinegar with me and had barely used it. Knowing the amazing benefits of Apple cider vinegar I have been having that with my meds and supps instead. So far so good. I don’t feel nauseas and I don’t have stomach upset… Maybe that’s what I needed. Apple cider vinegar is very alkalising and calming on the digestion.

I have continued however to have migraines. Now the neurotic part of me thinks, Oh God, could this be something more sinister. Then I think of all the triggers that could be setting them off and the list is extensive, caffeine, red wine, heat, sunshine, eye tiredness, stiff neck, lack of sleep, dairy products and more.. I can tick off all of those as possible factors to my head aches. So telling the neurotic me to back down then once I get home and realign my life then we shall see.

I made another batch of GcMAF yoghurt yesterday. Because of the heat here it’s process is complete much sooner than at home. This morning it looked like set yoghurt and smelt amazing. I am really loving this stuff. It’s in the fridge now and I will test it later with some berries.

Yesterday Pete and I decided to try something I had always wanted to do.. Paddle boarding. I was really nervous.. Lets face it I’m nervous about anything new. I wasn’t given any tips or assistance by the French guy renting out the boards and was pushed on my knees off into the sea.. Argh! It wasn’t great because he said be careful not to fall onto the rocks below! With that fact and the very wavy sea I was a bag of nerves. I whined and moaned as I tried to control the paddle board with my oar. Being panicky I failed to listen to Pete’s instructions and whilst drifting into a moored boat decided I would go back to shore. Poor old Pete was trying to help but I just didn’t get it. I watched a while from the shore then Pete came and got me. I had another go and this time I actually got up onto my feet and… Paddle boarded! Yay! However I wouldn’t say I was entirely happy. I really wanted to be able to jump off and on the board but because of the rocks was petrified…. Not ideal. I need a lake with no waves, tides or current. I need a shallow pool to jump off into….Where will I find that? I’m pleased I tried but now really want to master it.

This morning I had a message from a friend who has asked me to speak on a night her friend is hosting. She will be launching a calendar ‘inspirational women’ and wondered if I would like to say a few words. I will be announced as one of the inspiration speakers.. The calendar has been promoted on the Lorraine Kelly TV programme and Anne Diamond’s radio show. Gulp….. I know I should but I am such a wreck at speaking in front of anyone! I have been assured that it isn’t a big affair and my friend said I have a story to share…..

Thoughts have started to go back to home. I am already thinking about packing and the journey ahead of us. I have to say I am going to miss this place…it has been the longest three weeks of my life! It feels like so much has happened. When mum left on Tuesday it felt so quiet here. She was such a great support. I know I couldn’t have driven that beast of a car without her. She helped me clean, do washing and organise lots. (Yes I did cleaning and washing because I had friends arriving- a girl has to have standards you know!) it’s the first time I have spent two weeks away with her. It was lovely.

I am so pleased we invited many of our friends and family to stay. It would’ve been too big with just us here. It’s been so lovely having such happiness, laughter and joy surrounding us. There have been times when I felt frustrated and a bit lost but then spending all your time with people can be suffocating.. But how quickly that changes when they are gone.

So what now? I am going to really enjoy the next four days with my man. Next week is all planned and I aim to transition smoothly into my rituals back home. I hope to feel back to normal soon. I have a life coaching session booked for me to get focused and find my mojo again and in three weeks I will be a fully qualified health coach. Boy that year has flown by! My main aim is that I want to help other people have a better life…

I am looking forward to the autumn and the rest of the year ahead.

How is it looking for you?

Xx

The Bear is back…

Another five days have passed. Time flies when you are having fun! The week flew by actually and I have had more friends arrive and my step son leave. And at last the Bear is back! It’s been an interesting week. I am not the most confident person on the roads abroad and this last week I have been forced to drive, if I actually wanted to leave the villa. I would have been fine driving my little car that is parked outside my house in England but I have been driving Petes car. Parking has been an experience. I was happy for Pete to return yesterday to take over the driving role!

Our friends from Ireland are with us now for a few days. It’s so funny seeing them here. Obviously we don’t get to see them much but taking every opportunity to catch up is brilliant. We are so relaxed, chatting, laughing and loving. Their daughter Marsha is gorgeous and brings us so much happiness. I love her passion for shopping…. A true girly girl!

In the last few days I have abandoned having green juice. I am taking my meds and supps with lemon, bicarbonate of soda and olive oil water. This is much better and I am no longer nauseas. It is also funny how my diet really has changed. I am indulging in everything and anything I want. I am not being lazy. I am not feeling guilty. I am simply going with the flow. I do think it has having a slight adverse effect on my body such as diarrhoea and headaches but I love checking out the menu each evening and thinking, pasta… Yes why not. My friend Patricia said maybe my body is healing and letting it have what it craves is a good thing. I have spent so much time in the past few years doing the ‘right’ thing. I don’t think it will hurt doing what I feel for a while.

I am now going into my, wait for it, third week here in the South of France! I know! Three weeks! I may not be sleeping because of the heat, I may have mosquito bites itching me and I may be putting on some weight… But I feel so free. I have never stayed somewhere like this. I sometimes do my rituals such as enema, meditation and yoga and sometimes I don’t. Isn’t that great? Doing what ever I feel like doing.

What I do religiously is sit in the sun… I love the sun. In fact I have changed colour somewhat… I do love a tan. So I guess my vitamin d levels are quite high. It’s ok though.. I am preparing for the dark winter ahead.

I do have the odd thought about home. I am still planning treatment for my return. I text Carol the nurse from St George’s as I still haven’t had a reply about the next round of il2 injections. Carol, bless her, replied from her last day on holiday and said that if I didn’t hear from her on Thursday to contact her. I’ve text her again. I still have time to organise.

I still have the cough, although annoying, Pete says he doesn’t think it is getting any worse.

When Pete went home he picked up the recent copy of Prima magazine. Why? Because I am in it! I’ve attached a few pictures with the text. It’s so funny seeing myself in a magazine.. It was also very nice the other day to be mentioned in an interview with one of the lady’s from Nicola Jane mastectomy lingerie. My fifteen minutes of fame! Haha!

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So what is happening today? Soulful Sunday.. Fresh foods, plenty of sunning myself and plenty of time to be grateful. The main theme of the day… Love.

Tunes are playing by the pool… I am  having lots of cuddles with my Bear (well I need to catch up on the last weeks worth that I missed!) and then tonight we are off to St Tropez…. Darhlink!

Hope you are all feeling the love today.. Happy Sunday!
Xx

What to report from my floating lilo?

It feel like it has been ages since I last blogged. I’m not ignoring everyone I am just simply having too much fun living and relaxing and being away from home and out of routine. I’m into my second week away and it already feels like I have been here an eternity. Friends have left and more friends and family have joined me.

Sadly Pete has gone home for five days. He has to work. I am so lucky to be able to be on holiday but it feels so weird that Pete is not here.

What is there to report?

I have been battling with my meds and supplements still. But think I am conquering my nausea by eating something with them. I have had a few days break from green juice.

Sleep is still really hard. The other night it was very very windy and it felt and sounded like the house was going to fall down. The heat is crazy here but I am soooo not complaining. It is now September and the sun is still shining and the heat is immense.

I wish I could sleep better but at least I do not have to anything much during the day. To be honest I could sleep all day if I wanted!

I am not writing this to make everyone jealous. This is a once in a life time for me. I have never stayed in one place for this long and it feels great. I will want to go home though. Just not yet.

I would like to feel healthier. I don’t like having stomach aches, head aches, nausea and more. A lot of how I feel is down to anxiety too I think. What have I got to. BE anxious about? Nothing really but old habits die hard.

Whilst here I am still doing my weekly module of the health coaching course. Funnily enough it has been focussing on the importance of sleep. Oh sleep… How I miss you. I miss cuddles with my Bear and I am counting down the days till he returns.

I have been getting really brave driving here and yesterday had the wing mirror replaced. For a short moment there it looked like it wasn’t going to happen but thankfully the lovely French mechanic sorted it for me. Phew. So now the car is as good as new but our credit card balance has been hit hard. Boo.

Today I am going to try and eat well, stay well hydrated and rest. I have been doing lengths of our little pool here. Although not as many as my friend. She did 140 lengths this morning!

Last night I had copies of letters emailed to me by Pete. They were letters from my oncologists sending update letters to my GP. It was quite nice to read that they think things could be going in the right direction but that my next scan in October will be one to confirm that.

Prof Harris also wrote to say that he couldn’t give me mebendazole but gives his consent for me to proceed and have that treatment if I can get it. He also said he doesn’t believe a PET scan will be any better than a CT scan but if that is what Professor Dalgliesh would like then he will happily organise that for me.

It seems that the oncologists are all very agreeable at the moment! I like it!

Lying here getting browner by the day ( I do love a tan) has given me time to think about the forthcoming months. There is a lot to look forward to. Social events, trips away, treatments and more. I am even going to a spa at a London hotel with my old school friend when I get back. Not that I need pampering.. But any excuse for a good old catch up and gossip.

I have emailed Professor Vogl informing him of my current status and asked his advice. He is also so quick to reply and his emails do make me laugh. They are so short but to the point. He is very keen to get me to go there and have a scan and then if I want and need have TACE immediately.

I am not sure about this as I am in Duderstadt the week after I return from France. I may try to tie in after my scan around October time if we can make time for it. I’m obviously hoping I don’t need to go there but I have to say I am quite intrigued about meeting the man himself.

So my iPad just overheated whilst I typed this outside. I have now taken my iPad out of the fridge to finish off!

I feel so grateful and so very lucky to have this life in every way. I am so very grateful that despite my annoying niggles of nausea, diarrhoea etc, that I actually do not have any canSer symptoms. I look up to the sky from the lilo I am floating on at the deep blue sky and think to myself, don’t ever let this end. This feeling of calm, happiness and serenity. Give me back my Bear and then I will be complete.

Xx

A tense journey but we can finally relax….

It’s been a busy few days for Bear and I. Friday we took our friends at 5am and drove to the Eurotunnel. We had a little euro tour planned again but not for treatment this time. For the next 3 weeks I am on vacation. I know 3 weeks right?! How lucky am I?

As I couldn’t fly due to having had ablation less than two months ago we decided to drive to the south of France stopping en route. France is so beautiful and the changes of scenery are breathtaking.
Sadly our journey down here was more than we bargained for.

I stupidly forgot our passports and left them in the first hotel we stayed in. We stopped in a place called Beaune. It was so traditional and beautiful. We got up nice and early to get to our final destination in plenty of time to be able to settle in then I got a call to say I had left them behind! Doh! That added on a couple of hours to our five hour journey. Oops…. Then the whole of France must have decided to descend onto the motorway we were on. The long and short of it was that throughout the journey the estimated rival time extended to 11 hours and to top it off a large holiday caravan type vehicle decided to drive at us. Yes at us, taking our whole wing mirror off! It made such a loud noise we all thought something must have gone through our windscreen or taken the side of the car off!

Driving on the opposite side of the road is hard enough in a foreign country but driving without the wing mirror you so depend on is well, driving with a death wish! But we had no other choice. We have found a garage and in our broken French spoke to the mechanic who has sourced the mirror but we have to wait five days before it can be fitted. And the cost, well, it’s sickening!

We have tried to not get too upset by this and have ploughed on at having fun.

The weather is changeable but lovely and I have been doing what I love the most-sunbathing.

It has been quite a topsy turvy time for my bear and I. Having people with us means we don’t cuddle quite as much and the heat at night has meant we sleep at a distance. We miss each other and tempers have been flaring. I have been told that I am more agressive than normal and even though I don’t think I have I can only put it down to feeling under par.

I have continued to struggle with drinking green juice and taking my meds and supplements without the want to vomit. I have had stomach aches and upset tummies. Today though I feel much better. Maybe it’s because I am calmer and happier or maybe I have just got over myself and letting my mind dominate.

Where we are staying is very relaxing and yesterday I got to meditate and do a spot of yoga, I hope to get into a routine whilst here. Pete has to return to work so I will be here with my mum and some friends. I have already been losing sleep about driving here! But I am sure I will get myself sorted out eventually.

Yesterday we spent some time lazing by the pool and I got to read some really interesting documents that kind followers have been sending me.

I am hearing and reading a lot about mebendazole still.  I think I will need to book to go to the clinic in London that uses it.

Mebendazole disrupts the glycolic pathway while at the same time it can cause the cell membranes of mitochondria to rupture and cytochrome C, which leads to apoptosis.

I read though that not only that but other things like NSAIDS such as Ibuprofen (not sure it is the type you can buy in the chemist) are very helpful for treating cancer.

NSAID’s formulated in lipids which would be preferentially taken up by cancer cells, due to elevated levels of LDL receptors on cancer cells. Such a form of ibuprofen exists. The dose would be 400mg three times a day.

Ibuprofen binds COX1 and 2 and PPAR Gamma receptors in cells. Activation of these receptors in cancers cells particularly invokes apoptosis of those cells.

In addition the benefit of ibuprofen would be to treat inflammation induced by cancer, the ascites that sometimes results and the attends pain.

This seems quite exciting because these things should be easily added to my protocol if they are effective and if they are useful are relatively cheap to take.

I am definitely going to pursue this when I get back and in the mean time book an appointment.

My cough has been pretty bad since I have been away but today, touch wood, it seems to be much better. I hope it is what Pete says, that it is only the lymph nodes effected by the dying tumours. I don’t feel ill other than that and the fact it comes and goes is a good thing. I am hoping by the end of this break I will be as good as new.

I have continued to take scorpion venom along with reishi and more. The boot of our car was full of everything I need to do on a daily basis.. Lucky we drove really.

So today I am going to rest by the pool, listen to some music and maybe take a stroll along the beach later. Then I think I will do the same the next day, then the next and well, you see a pattern forming here.

Au revoir!

A week of treatment, bad weather and chaos!

Gosh I didn’t realise how long it has been since I blogged last. In my head I am journaling and blogging all the time as I have so many thoughts. It seems getting it down on ‘paper’ as it were, is not like it used to be.

I have had quite a good few weeks on and off. Ever since the weekend in Cornwall I have felt stronger and have been really putting on weight and exercising. Things were going well until I went to Germany last week.

It was a mixed week of treatment and chaotic events. We decided to drive to Germany as we figured we were going down to Frankfurt and then to East Germany. Not having really thought it through we set off Monday morning. It took us 9 hours to get there! As well as this poor Pete had come down with a fever and felt terrible. Within a day he had a massive cold sore on his face and then a really weird ankle pain had appeared. Since then his ankle is swollen and very sore. It’s a mystery but like a trouper he plodded on.

This was ok, as the next morning we didn’t have a really early start for Dr Seibunhuners except were given a room which couldn’t sleep in… It sounded like the lift was in the room with us. The next day we changed rooms…
I don’t look forward to Seibhuners. I don’t really like how it feels a bit unorganised. You’d think I would be used to this by now but I find it very disrupting. I had the usual hyperthermia, infusions of DMSO, B17 and artemesinin with IPT. This time my blood glucose went as low as 40. I could tell too as it had quite an effect on my bowels and I felt awful that night- flu like as before.

We chatted to Seibenhuner who is very hard to understand. He seems a bit crazy too…. We wanted to know about PDT and options for brain mets. We hit a brick wall really. I haven’t booked my next visit yet.
The next day after sleeping well in our new room we headed to see Prof Vogl at 8am. I got to see him first but as usual it was all very rushed. However the rest of the day wasn’t. I must have spent about 5 hours in total waiting around and that is not including the 3 hours of recovery time.

I sat freezing in a gown after an MRI for my procedure. I asked the Prof for lots of pain relief as it really hurt last time. He obliged but then it seemed he really did use all of his pressure and I have been left quite bruised this time. It’s that or I am sensitive at the moment.

After recovery where I felt off my head on the drugs they had given me I had to have a CT scan to check to see if I was ok and not bleeding. I sat for almost 3 hours waiting for a scan that took only minutes. I simply can’t stand it. I then saw the Prof again very briefly to tell me that the largest tumour has reduced again by about 10 per cent. Despite asking, he never gives me more information on the other tumours and the scan provided, I can’t do anything with. I asked about the brain mets and he said he could do TACE in the brain. Uh? How? But given very little info. He simply has given me another appointment to the same thing next time. I am feeling in the dark, despite asking the questions. How many treatments? My body has more than one tumour that needs to be treated. It’s a bloody mystery.

I have since getting back emailed many questions in the hope I will get some sense.
We left for Duderstadt to see Dr Nesselhut the next day. Arriving in the afternoon I had oncothermia, blood taking for testing before having more bloods taken for future visits and il2.

The next day I had the same thing except I couldn’t have the bloods taken as the results showed my haemoglobin is down to 8.9! I can only assume this is due the chemo in TACE. I saw Dr Nesselhut after and he was lovely as always. At least I get a conversation and compassion from him.

He told me of a new protocol combined with DC therapy that in the few people he has vaccinated has had remissions. He said he negotiated good prices and wants to use it on me next time.
I am currently trying to find out more about the drug he mentioned and will update you once I know more about it. I felt an instant rush of gratitude and felt quite overwhelmed. It was hard not to cry. Maybe this could be the hope and the change I need and then for all other TNBCers?

Having had a week away, Pete had said to book a few nights in Paris to have some fun after the gruelling week which had left me in pieces. I was not feeling well and really felt quite broken. Leaving Duderstadt quite late, the weather had become nasty, snowing heavily. Little did we know we were heading into traffic carnage. The motorway we headed onto had miles of stationary traffic and we luckily came off before we were stuck… Luckily is not the word I used when I saw the state of the untreated rural roads! Oh my goodness. It was horrendous. Both Pete and I were so scared especially when our car skidded all over the icy roads. In total there were 53 accidents in that area. The traffic on that motorway was more than 30 kms long and they were there almost all night. Poor things.
We spent hours getting only a few miles and realised we wouldn’t arrive in Paris until about 4am. Neither of us could do that. I called the hotel and pleaded with them to let the charge for that night go because of the extreme circumstances. The French guy said that he would and that we couldn’t check in until 3pm the next day. I thought it was a bit off but said fine. We then made our way to Metz and arrived late in the evening and found a hotel there for the night.

Pete at this point was wishing he hadn’t suggested the Paris addition to our trip. The next day we got up and headed to Paris, this time we were met with fog and snow and very icy roads…. Boo…
Arriving at the hotel we were informed that they kept the room for us all night and that we had to pay the full two nights stay. Honestly we just attract chaos and misery into our lives! This didn’t go down well with either of us and demanded to see the manager. I won’t go into detail at this point as to what happened but let’s just say I am still waiting for an email from the manager with a credit note for an extra nights stay as they wouldn’t give us a refund.
Hey ho… Moving on. We had a great time in the end in Paris. The Eiffel Tower is magical and the love and happiness overcame the events of the previous days.

Sunday we drove to Calais and got the train home. The weather was again very challenging but when we arrived home we were so relieved. I have since felt very nauseas and have been vomiting. I am gutted. I can only assume that it is the chemo and hope to overcome my light-headedness soon.

I have been emailing all the doctors giving them updates and asking advice. I am still booked for Eribulin later in February but really need to sort these bloods out and start to feel better first. I am doing what I can. I am eating the right foods (mostly) and have done some meditation and yoga and introduced green powders and a green juice into my day too. Let’s hope I recover soon! Please…..

I’m back!

I haven’t blogged for about a week and it hasn’t been through laziness or because I have been having ‘moments’ but because I have been away. Again? I hear you cry… Well yes actually.

This time we decided that we would combine our Germany treatment trip with a road trip though France and Germany and we smuggled a little tag along with us.. My mum.

She hasn’t been to Duderstadt before and she hasn’t been away for nearly two years so thought it would be a nice treat plus it was her birthday.

The three of us set off on Friday and you’d think this end of the journey would be easy.. We had a few near misses and one included a caravan being towed that nearly wiped out on three lanes on the motorway!

Get me to the Eurotunnel quick!

Our first leg of the trip was a few days in the Champagne region and we stopped off in Reims for a few glasses of the bubbly stuff and lots of walking. We did a cave tour of Veuve Clicquot and can now say we have some more knowledge on the expensive fizzy stuff we love so much (so much we have dedicated a bar to Champagne in our house!)

Our next leg was a stop off in Bonn, Beethovens birth place. We arrived quite late in the day but still managed to walk for hours and then we stopped off for some traditional German food. Mum had to try schnitzel, bratwurst and sauerkraut for sure! A weird thing happened here.. Out of the blue the weather changed almost within a minute from bright sunshine to a tornado! Umbrellas and tables were flying down the street as everyone tried to get indoors without getting soaked. This is when the weather in Europe changed for a few days.

The next morning we got up early and drove another four hours to Duderstadt. My treatment started this afternoon and I had a combination of zometa, il2, oncothermia and Newcastle disease virus as well as having bloods taken for my next visit.

After Pete and mum had checked into our hotel and I had finished my treatment we paid a quick visit to the lake whilst there was a break in the weather, and had a cheeky ice cream. Ok I know it’s not conducive to my normal diet but I was on holiday… Sort of! And a little of what you want is good for you.

One night in Duderstadt, a small lie in and after a great breakfast we had a little time to spare before my next round of treatment. I took mum to the spa at the Zum Lowen. There we had a splash in the pool, and basked in the Salt Oasis, steam room and sauna as well as scrubbed our bodies with ice and showered in tropical storm showers…

Next round of treatment was a bit of a repeat of before except a few things but on my way in I bumped into a familiar person. I knew the voice, well the accent, and put two and two together. I know of another canSer blogger who goes to see Dr Nesselhut and has been living in Germany having treatment for some time now. His name is Peter Trayhurn and when I heard his Australian accent I introduced myself as I was going to my appointment.

Immediately we started exchanging information and asking what treatments we were having. We agreed that if there was time we would have a quick cuppa before my vaccination appointment half hour later. I told him to look out for my hubby and mum.

After my treatment I walked back to the hotel and there they all were chatting away.

What I loved about Peter was his confidence and his ability to see the positive in everything. He seemed really ‘together’. A truly awesome guy whom I could have chatted to for hours and there still wouldn’t have been enough time. We had to get to see the doc.

After we all said our goodbyes and hugged we got back to the clinic where ironically we waited for an hour to see Dr Nesselhut. He is worth the wait.

As per, he was very smiley and lovely. He showed me a picture of my monocytes and dendritic cells. He said they are all looking good. As there were plenty of dendritic cells I had half intravenously and half intradermally. Next I had the antisense injection. The one that I should have had done last time. The doc said I shouldn’t get any side effects from it. So in went that injection too.

Next we got chatting and he told us how he found out a website in China have said that they have a Dr Nesselhut as their scientific director. Doc said, it isn’t him, they have completed lifted his name! Wow, that’s scary.

We then chatted about one of his patients who had a really good result recently and found out she had been taking the same stuff that Fidel Castro has been taking to stay alive and well… Scorpion venom. You can’t make this stuff up! Seriously! Funnily enough Pete had already heard about this but hadn’t been able to locate any of the venom… Until now!

We left Dr Nesselhuts with my next appointment booked and a bottle of Scorpion venom which I need to put 1ml under my tongue and hold it there for five minutes four times a day. It wasn’t cheap. Well nothing ever is! But when in my shoes you are almost willing to try anything. There shouldn’t be any side effects but we will see. I haven’t started yet. I will maybe tomorrow.

We all hopped in the car and started our journey back across Europe. Our destination for the night was Cologne. Unfortunately the weather was atrocious. Driving conditions were hazardous and almost every road we went on had accidents. Poor old Pete. He is so good and really does anything for me.

He was so relieved when we got there and finally checked in. We were quite excited because that evening was the Germany v Brazil semi final of the World Cup. The energy was bristling all over Germany. We went to one of our favourite restaurants in the city and were lucky enough to be seated in front of a TV. Luckily we had prior planned and prepared and bought German paraphernalia. Our neighbours kindly drew the German colours on our cheeks too!

If you are not a football fan then you may not know that German totally nailed it by winning 7-1! Honestly you can’t make this up either? It was amazing to be there and so much fun! It’s one of those, where were you when…..brilliant!

Another early morning the following morning. This was our final day and it was full of travelling. It didn’t start well. The hotel we stay in has its own car park. You drive into a big lift. A bit like going into a car wash it tells you whether you need to go further forward, back or to stop. We got in fine, but for some reason the lift wouldn’t accept us! Argh! We were trapped in a car park with no way out. After much faffing, technicians got in the lift with us and manually over rode it. Thank goodness. I had a terrible feeling of being trapped and never getting out!

The day was long and ever so hard for Pete. The weather was so awful with terrible visibility. I really felt for him. But despite the set backs we got to the Eurotunnel early. Yay! We could get on an early train… But then a train got stuck in the tunnel.. Boo..

We eventually got a train after having a little car party- A few cheeky small bottles of champagne later.. Well we have to make the most of our time! Pete then had another two hours of driving… I’m so grateful that he offered to take me by car in the first place but oh so pleased when we got home.

My day in the car you would think was pretty easy. It would have been had I not woken during the night with a fever. After the vaccination of dendritic cells in my arm, it swelled hugely and it gave off so much heat. Any reaction is brilliant in our eyes. Then during the night I felt hot, cold, achey and the soles of my feet were sore!? I put it down to the injections I had had. Again I wasn’t upset because I want there to be a response but I felt blah all day in the car. I needed sleep and the pain to be gone. At the Eurotunnel I took pain relief and got into the back of the car and curled up for the rest of the journey home.

We had our last night together in our snug having French goats cheese and a glass of Bordeaux. I got tucked up in bed and had the best nights sleep!

Today I really could have done with getting things organised back here but it wasn’t to be. I had to get up and get myself down to St George’s hospital again. The next round of interleukin two injections were waiting for me.

This time I went down by train and I had a very chilled trip. I am now back home writing this and have a fridge full of organic produce. I am looking forward to starting each day with green juice, meditation, exercise and all my other rituals.

We were sad to see mum go. We had such fun and times like that are priceless.

I miss my Bear already. He left for work and the gym at 5.45am and won’t be back until later.

I had a little moan about having to go all the way to Tooting today.. Pete reminded me I have one job and that’s to get better. He says he doesn’t always want to get up at 4.45am and go the gym then work but he does because he knows it’s the right thing to do and he has to earn money for our life. Puts it in perspective.

 

Before I sign off, this lengthy blog Saturday my 3 friends, plus their friend and father set off and attempted to climb the Three Peaks in 24 hours. The whole time they were going we were watching our phones for updates and texting other friends to see if they had heard anything. After each peak my friends father drove them to the next peak whilst they tried to rest. They started at 5.30pm on the Saturday and climbed through the night. I was so scared for them.

Well they did it with 45 minutes to spare! My Kitty’s Climbers did it and we are bursting with pride. It was very emotional watching their video when they finished.

Since then they have received lots more donations and when I last looked they were in the region of £4000! Their target was £2000. Such selflessness overwhelms me. One of my friends in particular had a real achievement as she did it with quite a few injuries after falling on her first peak. Bless her. They are all now on holiday and never want to see a mountain again!! Yeah yeah. Heard that before. Next stop amount Kilimanjaro… And maybe I’ll join them!

If you would like to donate please click the link and leave a message. Thank you in advance!

http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=SamanthaNicholson

I’ve attached a few pictures of our five days away… Hope you like them.x

I won’t leave it so long next time. My forearms are aching from the typing. Haha.

Ciao and light and love.

Xx

 


               Sampling the Champagne…. Clearly..

 

                A true German supporter through and through..

                                  Car party. Standard.

                      Oh Dear… The Queen and her Corgi!