Looking on the bright side….It’s sunny and warm there.

It’s been all go this week once again. We flew to Germany very early Monday morning for me to have appointments at Dr Nesselhuts clinic both that day and Tuesday. As usual the system was the same and I received oncothermia, nivolumab infusion, dmso shot, amygdalin infusion followed by Newcastle disease virus and Dc vaccination and ipilimumab.

Dr Nesselhut says that he is reducing the dosage of nivolumab and ipilimumab each visit as he doesn’t want me to have side effects that some of his other patients have had; one having complete kidney failure! It doesn’t put me off. So far I have no side effects so I will keep plodding on.

He was concerned by my haemoglobin levels being so low. He thinks long term it is not healthy and suggests stopping chemo. Right now I can’t stop having chemo in the form of TACE because it is the combination of all my treatments that is assisting the reduction of tumours and keeping new ones at bay. I am hoping that after my next TACE I will be having laser treatment to blast the tumour in my right lung. I do understand what he means and I would like to be healthy again but I have to keep this going as it works with minimal side effects and upset, although expensive. That is something I would like to be able to reduce. The cost.

Although Prof Harris, my oncologist has said my bloods are fine considering I am having treatment he doesn’t seem overly concerned and also said diet won’t be able to help it really. Well we have to try and make a difference so I am eating everything that is rich in iron and that includes liver!!!

Tonight I have the pleasure of my first taste of liver since I was a child. (I hated Saturday dinners- liver and bacon! Yuck… I’m not sure why mum made me have it!) I am going to shield it with lots of other stuff. Unfortunately the other stuff is kale……Oh… Never mind better this than getting sicker.

Any suggestions of improving my iron intake then feel free to comment.

I have noticed more recently that the veins in my left arm are looking lumpy and sore. I use the same arm for everything because the other side of my body had lymph nodes removed. Although only three I really don’t want to risk getting lymphedema. There is so much scar tissue in the vein now but luckily for me it is very superficial.

 

Whilst we were in Germany we had such a nice time in such a short period of being there. The staff at the hotel Zum Lowen are so lovely and really made us feel like family this visit giving us a Christmas present- our first gift! Pete has been so poorly recently that we decide to use the facilities to ease his discomfort. We used the salt oasis and the sauna with lots of menthol poured onto the rocks. His cough has been causing such upset and he seems unable to get rid of it completely. I am hoping that now it will start to clear. Poor Bear. It was a real treat for me too. I love having some pampering even if it is medicinal!

 

This morning we woke to such a lovely morning sky. Bright, clear and welcoming the day in. Pete was in a lovely happy mood full of cuddles and cheeriness. Not long after he left I dragged myself from my bed (oh my heavenly bed) and checked out my emails. As you do these days. I had some very sad news once again. This time from our friends in Australia whom we met in Germany over a year ago.
Their daughter had glioblastoma multiforme and she had been keeping the tricky tumour at bay for so many years but had travelled the world and tried so many different treatments trying to keep it bay. She had four brain surgeries and every time came back stronger with more guts and fight than before. She was so young but still found life fun and filled it with love. It seems that the fight had become too much and she had got an infection which the Australian hospital hadn’t noticed and left Jenni in so much pain. It was only when she went to have treatment in America that her oncologist there said they could have treated the infection simply and removed her pain in an instance. The infection was so bad that it had actually eaten away at her skull, so as brave as she was, they removed part of her skull leaving her brain exposed. I can’t even believe I am writing this… But she overcame it. She recently had a new tumour removed and this time it left her with paralysis of her arm and leg and even that didn’t stop her smiling. I am unsure of details and to be quite honest they are irrelevant. All I know is that beautiful, strong, Jenni passed away after years of being a pioneer and finding her way, with the support of her family. I was so shocked when I read the news and I am really choked up. No words can help her family but we are very sad for their loss. I am sure it all must be a blur right now.

With that news I got up and meditated and said a prayer for Jenni and her family. It was yet another shock and I feel so happy that I am doing well but it never makes me forget all the things to be grateful for. You can have everything in the world you have ever wanted but nothing can stop life from taking its own path.

Bear and I feel lucky, so far. The treatments I have had haven’t all been successful but I have been lucky to catch the changes before it has been too late. There are ups and downs in keeping the disease stable or in remission and the future is uncertain- for all of us.

I will never take anything for granted. I feel very lucky having met Jenni, albeit brief, and receiving emails from her dad Tony. I will take her strength and courage and keep fighting and trying to find a treatment suitable for the masses. It’s out there somewhere. We know it is.

 

Light and Love and keep looking on the bright side. It’s warm and sunny there.

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.

It keeps life exciting, eh?

I honestly don’t know where the time goes. I was thinking the day before we left the villa that I was going to leave a lovely parting message and my thoughts on the three weeks that had passed.

But before I knew it we were on the road travelling hundreds of miles to get back home. It is now Thursday and we returned on Sunday. I have been thrown back into work (my doing-I booked up straight away) and the domesticities of life.

Despite having a washing machine there I still had many loads of washing and have now cracked the pile of ironing.
Then I was off to London yesterday to firstly visit St George’s hospital to collect il2 injections then hopped on the tube to the London Clinic to receive the IMM101 jab.

It is the last of the il2 injections and part of me isn’t sad about it. I performed the injection as instructed and this time took lots of paracetemol to avoid any side effects. It worked to a degree… Although in the middle of the night I felt hot and very uncomfortable. I decided to take more paracetemol but it didn’t really help. I had an unusual sensation on my arm further down from the jab that I’d had that day. I had a little rub of it and it was an old vaccination site from when I visited Dr Nesselhut. Not thinking at the time I ignored it but now I am conscious I recall my heart rate being elevated and I was having slight trouble breathing… Um, alarm bells!? I think I might have been having an allergic reaction to either or both of the injections I’d had that day. It was very similar to how I felt at Dr Nesselhuts that time I became allergic to the gamma delta cells, but on a lesser scale. Thankfully.

I remember my kitty jumping on me at what I thought was about 3am. I thought, ‘How did she get in here?’, and then looking to the other side of the bed saw that Pete was already up. I was so confused.

I feel pretty drained right now and like I am fighting something. Working today is helping take my mind off of it. I have another injection to do tonight of the il2 and just need to get a cup of ‘man up’ and stop moaning.

I feel all I do at the moment is moan about how under par I feel. I have to admit I haven’t felt 100% in ages. What with nausea and stomach aches, flu like symptoms and this blood cough which is driving me mad!

It’s hard not to think anything of the cough. It is still there and makes me feel rotten. Only because it catches me out. And it’s a non-cough. It’ not producing anything and it really doesn’t feel like an infection. Well I hope. I have been chatting to a virtual friend who says she has been experiencing aches and pains. It is so hard living with canSer and not think the worst of every niggle, cough and ache.

What else has happened this week?

I have been in touch with the London Care Oncology Clinic this week trying to firm up an appointment to see someone so I can have mebendazole prescribed. I have to get a referral letter from Prof Dalgliesh who is on holiday at the moment.

I have also been in contact with a doctor in Wimbledon who offers intravenous treatments such as sodium bicarbonate and salicinum. I had to send a letter of consent from my oncologist, which I have done. I have asked a few more questions before I book an appointment but I don’t seem to be getting a reply.

I sent Prof Vogl another message as he always seems so keen for me to go there and crack on with his TACE treatment. I asked if I should wait until my next scan. Typically he says that I should get there ASAP… Hmmmmm
Monday, Pete and I fly to Germany for my next round of treatments. It has been about 10 weeks since I was last there so I am quite keen on getting some sort of boost. I also need more scorpion venom and Nesselhut is the man I buy it from.

So as usual a lot on….. But it keeps life exciting eh?

It keeps life exciting, eh?

I honestly don’t know where the time goes. I was thinking the day before we left the villa that I was going to leave a lovely parting message and my thoughts on the three weeks that had passed.
But before I knew it we were on the road travelling hundreds of miles to get back home. It is now Thursday and we returned on Sunday. I have been thrown back into work (my doing-I booked up straight away) and the domesticities of life.
Despite having a washing machine there I still had many loads of washing and have now cracked the pile of ironing.
Then I was off to London yesterday to firstly visit St George’s hospital to collect il2 injections then hopped on the tube to the London Clinic to receive the IMM101 jab.
It is the last of the il2 injections and part of me isn’t sad about it. I performed the injection as instructed and this time took lots of paracetemol to avoid any side effects. It worked to a degree… Although in the middle of the night I felt hot and very uncomfortable. I decided to take more paracetemol but it didn’t really help. I had an unusual sensation on my arm further down from the jab that I’d had that day. I had a little rub of it and it was an old vaccination site from when I visited Dr Nesselhut. Not thinking at the time I ignored it but now I am conscious I recall my heart rate being elevated and I was having slight trouble breathing… Um, alarm bells!? I think I might have been having an allergic reaction to either or both of the injections I’d had that day. It was very similar to how I felt at Dr Nesselhuts that time I became allergic to the gamma delta cells, but on a lesser scale. Thankfully.
I remember my kitty jumping on me at what I thought was about 3am. I thought, ‘How did she get in here?’, and then looking to the other side of the bed saw that Pete was already up. I was so confused.
I feel pretty drained right now and like I am fighting something. Working today is helping take my mind off of it. I have another injection to do tonight of the il2 and just need to get a cup of ‘man up’ and stop moaning.
I feel all I do at the moment is moan about how under par I feel. I have to admit I haven’t felt 100% in ages. What with nausea and stomach aches, flu like symptoms and this blood cough which is driving me mad!
It’s hard not to think anything of the cough. It is still there and makes me feel rotten. Only because it catches me out. And it’s a non-cough. It’ not producing anything and it really doesn’t feel like an infection. Well I hope. I have been chatting to a virtual friend who says she has been experiencing aches and pains. It is so hard living with canSer and not think the worst of every niggle, cough and ache.
What else has happened this week?
I have been in touch with the London Care Oncology Clinic this week trying to firm up an appointment to see someone so I can have mebendazole prescribed. I have to get a referral letter from Prof Dalgliesh who is on holiday at the moment.
I have also been in contact with a doctor in Wimbledon who offers intravenous treatments such as sodium bicarbonate and salicinum. I had to send a letter of consent from my oncologist, which I have done. I have asked a few more questions before I book an appointment but I don’t seem to be getting a reply.
I sent Prof Vogl another message as he always seems so keen for me to go there and crack on with his TACE treatment. I asked if I should wait until my next scan. Typically he says that I should get there ASAP… Hmmmmm
Monday, Pete and I fly to Germany for my next round of treatments. It has been about 10 weeks since I was last there so I am quite keen on getting some sort of boost. I also need more scorpion venom and Nesselhut is the man I buy it from.
So as usual a lot on….. But it keeps life exciting eh?

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!

A mad week ahead starting with day one of treatment in Germany…

I have a bit of a mad week ahead of me. Yesterday we arrived in Germany and today I have treatments including zometa and il2. We get back home late Tuesday night. Wednesday I have to skoot to the hospital to have my blood test then back home to get some work done.

I have received a letter from Dr Gonsalves, the radiologist who will be perfoming the ablation and I am booked for clinic at 9am on Thursday in South London. That’s another 5am start. I get to discuss everything to do with the forthcoming surgery in June.

Friday I am back to London for my next vaccine on the trial Professor Dalgliesh has put me on using heat killed mycobacterium.  The last vaccine has been fine. My arm looks like it has a very big insect bite on it. Nasty but nothing I can’t live with.

Amongst all this I need to work and study for my health coaching course.

Life is just hectic sometimes and to top it I have social engagements. (I’m not complaining! Life is rich!) Getting the most out of life.

 

The good thing is that I have a plan. The 19th June all of a sudden doesn’t seem that far away. I am pleased I get to celebrate my birthday the weekend before going into hospital. I am very nervous but will give more details on the ablation once I have been to the appointment on Thursday.

 

The next few weeks it’s seems that things are just rammed in our diaries. There has been too much eating and drinking recently and I’d really like to feel cleansed.

I have put on half a stone. I immediately feel anxious about it as I have felt great with my ‘new’ weight these past two years but as Pete keeps pointing out, there is more of me to fight the disease. I know he is right. It still wouldn’t hurt to eat more consciously. It’s easy to digress from the plan sometimes but with no regrets you resort to going straight back on the straight and narrow.

 

I have already had today’s treatment. I had local hyperthermia, inhaled air from the airnergy machine, had an infusion of zometa an injection of il2 intradermally and Newcastle disease virus intravenously. I feel fine as usual. I got the thumbs up to go swimming and use the sauna etc.. Yay!

 

I’m back at the hotel now where Pete is trying to work on his iPad using the wifi and I am enjoying another cup of green tea.

 

I have just looked through the notes on my iPad and found the excerpt below from September 2012. Nothing has changed and it still sums up what I want from life;

 

My Goal

To outlive the life expectancy.

To stop the progression of cancer.

To actually go into remission and kill cancer.

To live each day being thankful and full of compassion and love.

To help other survivors to be able to have dc treatment.

To brighten others lives by sharing my knowledge and passion for a less acidic lifestyle.

To have acceptance of life and what it may or may not bring.

 

What are your goals?

 

Love, light and more love.

Xx

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

                  Out for a lovely walk in Duderstadt.

Guest blog by Bear.. Gamma Delta

I guess by now, you know that if it’s a Bear Blog, then it hasn’t been a good day.

 

We are in Germany for treatment and we had two main objectives today. Firstly to unravel the tapestry of inconsistencies that have accrued over the last 4 months and then to have a successful gamma delta cell treatment.

 

The good news is that we achieved one of those goals. Dr Nesselhut (Jr) was very candid with us and we are now able to understand the reasoning behind decisions in respect of treatment levels. If that all sounds a bit MI5 it’s because it is sensitive and not really for release. The most important confirmation is that Claire has not suffered any degradation in treatment and matters are now being addressed, so onwards and upwards. The bitter sadness was again present though when the explanation of where the donor cells Claire had last time became apparent. Donor dells are only available if they are not “used”. Being a bit think skinned, I then managed to ask “Why wouldn’t they be used?” It’s a canSer clinic Bear – why did I think they weren’t used. Have never felt so sick.

 

Achieving point 2 proved a lot more problematic.

 

Having confirmed that this time the Zometa (chemical used to infuse the cells – that destroyed mine last time due to a fault) was good and I had managed to donate a good amount of cells for Claire we prepared to administer the vaccine. The dendritic vaccine was to be given afterwards directly into the lung intravenously and half under the skin of the arm.

 

Claire was attached to the automated chemo style syringe dispenser and the doctor and nurses said see you in 30 minutes. Almost immediately Claire felt pain in her chest that spread from the front to between her shoulder blades. Being a hard east end girl she told me to “leave it” and let the treatment continue. After about 20ml of solution and about half way through, I noticed other symptoms and realised she was going into shock.

 

The medical staff were awesome. They arrived like a battalion of winged archangels and immediately realised that she was having an extreme allergic reaction that was enduring shock. Her blood pressure was dropping and they feared cardiac arrest.

 

By now Claire was pretty much unaware of what was happening but she was administered an anti histamine, calcium and another drug via oral spray that I could not catch the name of.

 

This seemed to do the trick and her pressure to was restored. However by now she resembled Will Smith in Hitch and had swollen lips, puffy itching and watering eyes and her skin was so red and hot it looked like it may split. Even more oddly the injection spot used for the last DC vaccine had come up on her arm like a golf ball.

 

We all sat back and waited. After about 45 minutes Claire could speak and was (can you believe it) “keen” to crack on with the treatment. As she put it “That’s £5000 of my cells in that syringe and I want them!”

 

Needless to say the Doctor refused this request and sent the remaining vaccine to the lab for a thorough investigation. It is a real mystery as she had donor GD cells last month and it was fine. In true German joke style the doc told Claire, “you are allergic to your husband – yes?” (many a true word said in jest)

 

He also refused to administer the dendritic vaccine into the lung and couldn’t use the arm as this still resembled a lunar landscape, so he injected it into the stomach. How that didn’t make me sick I’ll never know.

 

We then had to wait another 45 minutes to make sure she wouldn’t turn into the Incredible Hulk before a mad dash back to Hanover airport. She is still a very poorly bunny but a night in her own bed and some loving hugs should put her right, while we wait with baited breath for the lab results.

 

How amazing if this turned out to be the sequence of events the actually created a cure? I wait for my little miracle to happen. Bye – Bear