Feeling better….

Friday again… Where do the weeks go? We have been to Germany and back yet again, this time to Duderstadt to have treatments at Dr Nesselhuts clinic. Literally on arriving at our hotel I had a message to go straight to the clinic. I got straight over and there and had an infusion of nivolumab. Everyone at the clinic was lovely and I really feel like they know me (probably due to the amount of emails I have sent them over the last two months. Hi Ladies!)

I still wasn’t feeling brilliant after last week’s treatments and had been struggling eating and keeping food down. After treatment I chilled with the Bear and we walked and tried to get some fresh air.

Well you know what comes next. The best night’s sleep ever! I need that bed and their sheets!

The next day I felt a bit better and surprised myself by eating a really hearty breakfast. I thought, ‘I’m back baby!’ But this was short lived as I had a few hours of infusions such as B17 followed a Newcastle disease virus injection then a jab in my leg DMSO ( a great anti inflammatory) then I saw Dr Nesselhut. We discussed my scan that I had at Vogls and that we know there has been changes in my right lung. He said that they not only give me my usual dc vaccine primed with NDV, and have the Pacific sea snail injection but this time we would have a low dose of ipilimumab. The doctors there had been talking and decided that although ipilimumab is dangerous and life threatening that a low dosage could be really beneficial alongside nivolumab. So that’s what i got! Boom just like that.

I have to say I felt really pleased. The last two days really gave me a boost and sense of hope. No matter what my scan results say next week I do know that I have already gone in there proactively having treatment.

And boy do I know. Temporarily I felt a real high and but soon enough I started feeling cold and sickly. The sickness wasn’t from Nesselhuts treatments but a culmination of other stuff, fever and so on. By the time we got home, which was around midnight (I wish BA would put on an earlier flight from Hanover!) I threw up right before bed. It was horrible came out of my nose and everything! Too much information?!

My arm as usual instantly reacted to the dc vaccine and I still have an inflated arm which is hot and itchy. But this has been somewhat overshadowed by the other ailments or side effects I am currently experiencing. My thigh where the DMSO was injected really hurts!

Yesterday I felt so rough and I felt so empty from lack of food. But every time I ate I wanted to be sick and I couldn’t decide if this was in my head. It really stresses me out and I cannot afford to lose weight. The other problem is my stomach has shrunk so I can really only manage a tiny amount without feeling full to burst. I am only 8 stone ten pounds as it is at the moment. I know it worries Pete to bits. Well with that and this incessant cough which is really hurting my rib that I broke last year. (I so wish it would heal,) I was not good to be around!!

So yesterday I wallowed and wished not only Pete was with me but my mum and my good friends too. I did throw up again but really made a conscious decision to get this sorted! By the time Pete came home from work I had managed to eat a good lunch and had planned our evening meal. Simple but filling. I ate it plus dessert. I went to bed feeling much better.

So I think the key is don’t ever let myself feel s empty as it makes me feel sick! I am laying off the supplements until I can eat, as it’s no use having them without something in my tummy.

Well today i am a different person. I woke naturally with Pete this morning and it was such a beautiful start to the day. For once I didn’t want to go back to sleep and got up at 7am. That’s early for me! I felt ok. I decided to eat immediately then again and again and again. In fact I have been grazing all day. And I haven’t felt nauseas once. I also made the decision not to cough. I am being really mindful not to cough. It’s a reflex but there’s nothing there. The tumour that is causing it is going to go and I will not put up with it. So far today I have coughed much less.

The bruises from TACE are going and my sore leg from the DMSO injection is feeling much better.

All in all, today is a much better day. If you spoke to me yesterday it was a very different picture.

I actually felt so much better that my rituals have been reinstated and I actually did some light exercise! Go me…..

My mission that I have accepted is to get strong. Stop my bloods being low. Try to get back on as many veggies and anti inflammatory foods as I can. I need control over some things. And this is huge for me. I simply cannot continue living feeling rough.

I am prepared for my scan results next week. No matter they are. We will have a plan and crack on with them. It’s good talking to Thomas Nesselhut as he said that nivolumab is really good on brain tumours. Well let’s hope that there isn’t any lurking in there (despite me having a few migraines recently) but if there is they got a good dose of nivolumab to whip into shape! I think leaving such a long time between treatments is what has caused things to grow again but I feel optimist things aren’t black and white. Maybe some tumours have grown and others lay dormant. I will always look for the positive and hold onto that.

I am chuffed that ipilimumab has been used no matter how low a dose. The dose will increase if I can tolerate it. I was asked to book for four weeks but due to other commitments it has been booked for seven weeks. However in the meantime I will be seeing Vogl so it’s not as if I won’t be having further treatment soon.

Right now I am happy that I home. I am loving my life again now i am feeling a bit better. Yesterday was actually quite nice as I spent most of it in bed, but today is even better as I feel quite good. I am looking forward to Bear coming home and having another lovely weekend together. We have no plans. So who knows what we might get up to?! I long to be back exercising daily and feeling really strong and healthy. That may take time but I’ll have fun getting there especially when I have the help of friend who is constructing a yoga routine and skyping me from Singapore.

I won’t worry about the scan results yet. Each day as it comes.

Have a great weekend.. Light and Love. X

 

TACE twice in two days…

Right now I am sitting in a restaurant at Frankfurt airport, having had two, yes two TACE treatments back to back. I have plenty of time to use as we bizarrely had a stroke of luck at the hospital. I don’t know if it’s from my incessant emails and complaints the last time I came here that they actually took on board the long waiting times and actually saw me quicker so I was in and out of there within about five hours. That mean getting there at 8am each day but I would rather that than wait even longer.

There is a down side. We got here hoping that British Airways, our chosen airline, would let us on an earlier flight like they did once before. Well yes they would and we would be boarding now if we wanted to pay an extra 600 euros each!

Bloody hell… well we are not that silly with money (despite what doctors’ think in the UK) so we opted to spending five hours here at the airport.

 

So far we have had two waters, two beers, a latte, two cappuccinos, a walk, a sit down and time to reflect and now I am using my timely wisely by actually updating my thoughts and blog.

We are strangely tired from doing very little, although it is very hot and humid so that could be a contributing factor.

My Bear has been lovely this visit. What I mean by that is that Frankfurt isn’t usually our favourite visit. It isn’t the place, it’s a great city and after looking around last night in the balmy temperature we realized how cool and funky it is. Bear feeds off my anxiety and nervousness and once my impatience kicks in at the hospital I put him in a really bad mood. Also Prof Vogl was on really good form. Maybe it was because he knew he was heading on holiday at close of play today for two weeks.

This time I asked Bear to stay away and not wait with me. I was actually calmer than usual and felt at ease until this afternoon. I am like a child. If I feel others are pushing in, it all seems unfair. This happened this afternoon waiting for a ct scan. But I got over myself and plodded on.

 

It has been a very successful trip I believe. I had two TACE treatments. One on Thursday and one today, Friday. I have never done them back to back mainly due to money and also the thought of having to surgeries and two amounts of chemo drugs so close together but this time, and as Prof Vogl offered we thought we should go for it.

Have you ever noticed I talk about me as ‘we’? Haha. I include the Bear into my treatment. He goes with me and feels my fear, and worry so therefore I believe it is a ‘we’ and not a ‘me’.

Back to the story.

The reason we decided to have TACE now is because I had a feeling. I have had a cough albeit a slight one, for a few weeks. Well I know where that went last year so I wasn’t prepared to wait for it to get worse and as much as I don’t want to be over sensitive and convince myself my thoughts are wrong, I cannot risk it.

 

Last week I went to my local hospital for my three monthly scan, although they were actually only just over two months. I had an MRI of my head and a CT scan of my chest. I don’t get the results until the 4th august but I didn’t have too long to wait to find out some detail.

One of the first things that happens when I see Prof Vogl is an MRI of my chest and CT whilst having the procedure.

He mainly focuses on my lungs and said that my right lung has two quite large tumours. He compared it to my last visit in January and they have doubled. I then got out my report from last scan in May and the sizes have enlarged from 33mm to 47mm. He said there is another one but he thinks the larger one is the main thing to worry about and treat.

I was of course a bit miffed to say the least, however not surprised.

The lack of intense treatment over the past few months has made me nervous. I know the saying my friend says, ‘Where thoughts go, feelings grow and actions follow’. So could it be my negativity that has caused this?! Rubbish. I have felt a bit unsure only doing nivolumab at Nesselhuts. Thing with all these immunotherapy treatments and alternative methods is they need to be combined with other things. It needs to be attacked. Well I think triple negative breast canSer does anyway.

OK I still have supplements and mild medications but the body changes. This is proved in my most recent RGCC blood test. Chemo’s that were really effective are no longer effective. And it’s the same for complementary treatments such as vitamin c which were not meant to be helpful now apparently could be.

It’s weird. I don’t 100% feel that Nesselhuts treatment is going to fix me but as Pete pointed out, what if the new tumours that were mentioned in May’s CT report are no longer there? I asked Prof Vogl for details about them and about my left lung and he definitely said there were none in my left lung. Well call me old fashioned if things weren’t working at all then surely they would have popped back up too. This will be confirmed in a few weeks with better detailing from my local hospital. Well as detailed as they like to be anyhow!

 

I felt a bit scared and disappointed last night and have done recently with the ever impending doom. Maybe because I was overtired and full of drugs that were wearing off too, but I really felt sadness and fear that I was going to die last year and I would have wasted all this time. I hope my head is ok and that the gamma knife has worked. That would be a real result.

 

All this change and going backwards and forwards with success and then some non success makes me question everything. But I had to try nivolumab and as advised by Nesselhut not to have chemo of any kind at the same time. My disappointment is that the time I have had to wait to get an appointment to see him again.

We fly out there next week. Its time to see what he has to say and get a detailed explanation of what the RGCC blood tests mean.

 

The thing with canSer is the uncertainty. But something that Nesselhut and even Vogl said this time is ‘you look good and let’s deal with the big ones’. The little ones kind of sort themselves out. OK I get it. I am living really well I don’t have any major symptoms and my daily life isn’t impaired. But what about spread into new areas? I always think if there are that many micro metastases then surely it means that it could be floating around my body wanting to take root! Please, please don’t have gone anywhere else!

 

This time at Vogl’s I had loads of ‘happy’ drugs, as I call them. I was away with the fairies yesterday and felt so peaceful. Today sadly it didn’t have the same effect. Every session is different. But what I did think was if this is how dying could be then it wouldn’t be so horrible. The fear of dying is the thought of suffering and being full of sadness but falling into a loving and happy slumber would be perfect.

Now why am I mentioning dying? Because as Pete reminds me we will all die one day… I know this. And living with secondary canSer reminds you regularly that life is on a thread more so than others maybe. I am afraid my mind does take me down this road every now and then and more when I am having treatment. It scares me. It saddens me that I am living this life and poor Bear has to be dragged through it too. It’s unfair but then I look at people on DIYSOS big build on the TV last night, oh my god… I have a blessed life.

I can live with this. In fact I may not be canSer free, but I am better than I was September last year. I know my results could show up something horrible and if I have to have gamma knife or alike again for my head then so be it. The human body and mind are amazing and although I am getting older (did I tell you I just turned forty?! Ha-ha) I believe I can keep batting it back.

 

I have been having a battle with myself recently. Again. I know it gets boring I am sure to anyone reading this as I do bore myself with these reoccurring thoughts. But what I if completely abstained from alcohol, changed my diet dramatically and became so mindful and strong minded with visualizations, would I beat it? Maybe I should try it? But I am being really honest, I don’t want to. The question then poses, do I want to live? If I did wouldn’t I be prepared to really go for it? Well I kind of have over the past few years. But I have felt my happiest when I have relaxed and enjoyed my life.

Germany isn’t a great place for being vegan. Life is hard for those around me and alcohol is part of my relaxation. Although drinking to excess is not. As I have found out these last few weeks. I am sure my body isn’t responding to drink like it used to. Maybe it has something to do with turning forty! A reoccurring theme….Ha-ha… only joking.

The thing is I could be really scientific and strip it back and do one thing at a time. Stop supps and meds and just have TACE and then start combining other things. Wouldn’t this make my life easier and a little cheaper for a while?

I believe it’s what ‘One’ believes in. For me combining everything has made sense although a bit confusing. For others just dedicating their lives to one or two elements has been their best way forward. This is the way for my friend who currently has no canSer! Good on him.

I guess I am not that trusting. I don’t feel I can do this unless I really kick its arse. And that has been the way ever since we came up with the Ten Point Plan on my website. (This by the way is going to be having a big overhaul and update over the next few months. Things don’t happen quickly these days as I like to take my time and do things when I feel like it.)

 

I do feel like I need something. I feel I need direction and a sense of achieving. I could work again but I don’t want to and actually can’t since I have ripped out the treatment room to get rid of the darn damp that has been annoying the house for a few years. Previous owners blocked up the air holes… duh!

 

So how do I feel now I have off loaded? Better I guess but I feel I could type forever. My thoughts and feelings have been coming and going daily and I know I should journal more. But I fear putting them in the public domain just makes me sound desperate and actually boring. I go around in circles and I can’t help that I don’t have discipline in that area.

 

There has been two days since I last typed as we had to go and catch our flight….

It is now Sunday….

My thoughts and feeling have changed somewhat.

I am now less buzzy and uplifted as I was when I typed the first lengthy part of my blog. I know I was rambling and that would be the drugs I am certain of that.

I now feel quite low. I am ok. I don’t mean depressed but I am tired and feeling a bit sad and definitely sore.

When I mentioned that I had TACE twice, I had to have the procedure performed on either side of my groin. Prof normally makes a small knick on the right side of my groin and inserts the tube into my vein and up into my lungs. I can see it on the CT scan. It’s crazy!

Well because I had a second treatment he had to do it on the left side. This was new. He also told me he did it differently by inserting it into my artery. I asked why? He said so that he could get the cancer cells that were transporting around my body too. Oo ok. This is good. Let’s get the buggers. That said I have been in quite a bit of pain since. The entry site is really sore and I have had quite a bit of swelling in my thigh. It hurts to bend and walk and I feel like I have had surgery. I hoped that by now, Sunday morning, that it would have passed. Sleeping is a bit uncomfortable but I simply cannot expect to go through these procedures without having some pain can I?

 

Yesterday was a bit of blur. I was tired and emotional but we cracked on, as us Grants do, getting jobs done. Pete was on fire! He was firing on all cylinders getting so much done. We tried to enjoy the decent weather. A good thing really as today is a very wet and dismal day. I don’t really mind as I love being snuffled up.

 

We went to bed really early last night to watch a movie that was on TV; Despicable Me! I had never seen it and I absolutely adore minions. I was made up. What I wasn’t prepared for was how it pulled on my heart strings. I am such a sucker for feel good stuff whether it is animated or fictional or not. My Bear had over done it and fell asleep during the movie and I tucked him up for the rest of the night. Bless him. So that means we have had an epic 12 hours in bed!

So why do I feel so low? I think it is the drugs leaving my body and probably the chemo drugs doing their thing. I have a bit of a furry mouth.

 

I don’t mean to wallow but I can’t help it. I don’t want to feel sorry for myself and I am sure I will bounce back in due course. There is a lot coming up. We fly really early Tuesday morning to Hannover to make our way back to see Dr Nesselhut. I am unsure how that will pan out. I feel very conscious the cost of this treatment and I really don’t want to throw money at it wily nilly. Pete still thinks could be really helping so I am more than happy to go with it. I always find immunotherapy mind boggling.

 

My next appointment with Prof Vogl for another TACE is in about four weeks. I will not let this thing take hold again and to be honest until we get a more detailed look at my scans it’s hard to know what’s going on.

 

I do know that I have to start thinking more about being mindful. I think this is the hardest part of living with canSer. It’s all very well coming to terms with the possibility of death but the fear of getting ill is so hard to understand. I am not physically ill right now and I have to keep healthy as I can be. Being mindful takes so much control and lately I have felt quite angry, and upset what with one thing or another. Hard to believe with all the good stuff that has been happening in my life. Then there are always people who want to bring you down.

Being mindful is something I am going to get work on… Starting today. I am having pancakes for breakfast with a big hug from my Bear. Then I intend on sitting and feeling all kinds of happy thoughts.

Bring it on……Happy Sunday All. XX11800001_10153011425372061_885426002863511527_n

Ssshhh, today’s the Bears birthday. He wanted to keep it quiet!

11350513_10152913758522061_1394559511109237082_nToday is my Bears birthday… Unlike me, he wanted to keep it quiet and not celebrate. (He said he has had enough of celebrating! Haha) He said this year was all about me… Just like every other year! I make sure everyone knows it’s my birthday but Pete is such an understated individual. All his work and dedication, his loyalty, passion, drive and constant love and thought for others…. That is the kind of man who stands beside me. He is an honourable, kind person. All the times when everyone has congratulated me and says how strong I have been. I am not. It is Pete who is. He continues to support me and keeps me on the right tracks and let’s face it, he gives me this amazing life. He has allowed me to continue to stay well without the stress of having to work every day and he works so hard coming up with the funds for more treatment abroad. I mean, seriously, I wouldn’t be here without him. There aren’t many of these people out there. I was lucky enough to find myself a ‘Bear’. Girls, if you find a Bear then hang onto him!

 

You know being a Bear keeper isn’t that easy. With all the good stuff does naturally mean you have some times when the Bear rages and is upset. But most times I understand why he is upset. It’s normally when people take advantage of his good nature, when they are not loyal and when they really push the boundaries of his friendship and principles.

Would you believe that even through hard times such as we have experienced over the past five years (for me but many more for Pete), that there have been people who have stolen, lied and hurt him?

There are many examples I could give but I think the best ones have to be someone pretending to have a chronic disease that would be life changing, only to find out they were lying. Or those who Pete has taken care of and then they decide to rip him off and not only take money but clients that Pete has worked really hard for over the last twenty years, to build up.

You see the thing is, most people are kind hearted and thoughtful but it seems there are so many people around, that despite others circumstances are really only out for themselves. I am not expecting people to pity those who are having a hard time because at some point or another we will all have some hardship of some kind, but sometimes this life really does make me wonder. I actually don’t know how those kinds of people live with themselves and quite frankly, they should be ashamed of themselves and do the right thing. But then what am I talking about? The world has gone crazy, hasn’t it?!

 

Maybe this is why Pete has decided to try and keep his birthday quiet, well at least he has decided not to throw a huge party or anything. I will do my best this evening to make him feel warm and fluffy and loved beyond belief. He wouldn’t let me buy him any presents, so he will just have to be smothered with kitty love instead!

 

In a few days we have more excitement coming our way in the form of our Irish friends coming to visit. This is going to be another very memorable weekend then it is back to business. Firstly I have an MRI and CT scan booked, then we are off to Frankfurt to see Prof Vogl for two TACE sessions!

Then hopefully the following week we will be off to Duderstadt for more immunotherapy. I am still waiting to hear from Nesselhuts’ PA but I have everything crossed as usual they sort it out.

At the end of all of that I get my results for the scans to find out what has been going on in there.
I didn’t want to wait to find out results before having treatment. I just feel sometimes even if things are looking pretty good its best to get cracking and keep this devil down.

Right now I am sitting overlooking my flowering courtyard and feeling so very grateful for this life. I started Deepak Chopra’s meditation challenge yesterday and am trying to follow his lessons daily. If you want to join me you can get the app for your phone and access it anywhere; https://chopracentermeditation.com/mobileapp

This year is flying and I am hoping it will continue to stay awesome.
Everyone says I am an inspiration. I don’t agree. Pete, my Bear, is an inspiration. You’d be lucky to know one. Light and Love. X

 

 

 

 

 

Another milestone……

Another great weekend passes and I have been living it up in London with my mum and sister. We met in London to celebrate mum’s birthday. I feel like I have been flying by the seat of my pants these last few months and there is still a lot to come.

As I mentioned in my last blog, I have been trying to get treatments booked as it has been way laid with one thing or another.

I now have confirmation that I am going to Germany for TACE with Prof Vogl. Firstly he didn’t reply by email then I tried his secretary who said he was fully booked prior to going on holiday but then I got emails from the Prof himself and he said he was available?! So I have booked two treatment dates a day apart! Eek! The thought of having TACE two days on the trot doesn’t fill me with happiness but it does fill me with hope. I know TACE works for me in my lungs especially as I am unsure whether nivolumab has worked for me (mainly because I have only had a few infusions and vaccines in the past couple of months unlike people on trials who have it every two weeks)

I have really spent time the last few days comparing the RGCC blood test results to the one I had last year. It is surprising that things have changed; such things as vitamin C which was apparently not effective for me last year, is now.  I do want a lot of the results deciphered but I will have to wait until I see the Doc. One thing that does worry me is the cell cycle rate- which states it is rapid….Gulp.  I should get results from RGCC tomorrow regarding nivolumab.

 

Last Friday was another milestone for me. It has been three years since I was told that the canSer is incurable and I had a life limiting disease, offering a maximum of two years. I don’t necessarily feel that it needs to be celebrated but it is a date that has stuck firmly in my head. I came home Friday from London especially early to see my Bear and to have the best cuddles. OK, some champagne may have been involved. (It’s the only way we know how to celebrate in style) We both feel that the fight is far from over but I am dedicated to trying to stop this once and for all.  Here is the post I added to our facebook page on Friday;

‘Life is all about the journey and not the destination. It’s about our fellow travellers. Not about the class of our carriage. Three years ago today I was told that I’d be getting out at the next station, just down the track. Bear said that he’d make sure the train didn’t stop and that even though it would be scary and I’ve had pain if I could stay by his side for five years he promised we could grow old together. So today looking back this journey could not have been more filled with light and love. Not just the people who hug me in person, but everyone who gives me love and shows me light in this virtual world. Tonight we are having a reflection that I am as healthy as I have ever been, that the Universe has smiled on us and that our love for each other, for you and for this life has got us over so many hurdles to this fantastic station. Everything is beautiful. Everything is right. And we only have two years until we think this will be a chronic disease not a death sentence. We couldn’t thank you more. We love you and put our arms around the world. Big hugs, Kitty and Bear. Xxx’

Here’s to the next two, three, five, even ten years of being fit and healthy and finally being able to stay alive without it being too gruelling. I have faith…… We must keep going!