Today is Good Friday… Not the Easter kind.

Fridays are always such a happy day; the weekend to come and feelings of,’ Yes I’ve got through another week!’ Today however has been even more off a ‘fist punch’ day.

Last night, feeling overly tired we headed to bed early. I didn’t think Ii was nervous or bothered about heading down to the hospital today but clearly I was, as I barely slept, not helped by our naughty cat who keeps meowing at our bedroom window to be let in when she has a cat flap down stairs! Anyway, I got up early despite my appointment not being until 11am in London.  I couldn’t hang around and didn’t want to be late so just got myself down there as quick as I could.

Anxiety and feelings of fear got worse as I approached St Bart’s and I started to feel like I was going to throw up. Not great when you are wandering around Smithfield’s. With so much time to kill I headed past all the cafes and salivated at the thought of croissants and crumpets (yes crumpets! I love them, they remind me of my childhood…) but as I walked I thought I cannot avoid going to Beppe’s cafe again. It’s rough and ready like a proper ‘greasy spoon’ cafe. I didn’t think I really fancied that this morning but I felt the magnetic pull of the place. I decided that if there was a table free then I would go in. As I peered through the window someone was just leaving… Right, that was it. As I walked in the lovely chap there was enthusiastically friendly and familiar. Such a nice guy. I’m pleased I went in there now.

By 9am I decided that I would get checked in at the clinic and sit it out. And that I did. Whilst there, a slight lady sat next to me and started talking and telling me about herself. She spoke so softly it was hard to hear everything she was saying. She was so upset, she cried during her story telling. I tried to ask the right questions and wanted to know if she had support, but it seemed she didn’t have anyone. I asked if she could go on forums or visit someone like Macmillan or Maggie’s centres. No. So I just listened. She was very sweet and said how beautiful I was, still. Still?
I popped to the toilet and when I returned she had moved seats. Had I said something? I am so lucky, I thought to myself. I have such a support network and Pete; my rock, couldn’t give me more love than he does.

Anyway moving on, I was seen before my appointment time which was a bonus. Dr Plowman was his jovial self. I really like him. He read my folder and I filled him in on the details of my MRI on Monday etc. He tapped on the keyboard and clicked on tabs and located some of my MRI images. There was no report ready as yet. We looked at the images of my brain together. He said it was a good looking brain and everything looked really good. I asked what a brain tumour would look like and he said an asymmetric dot. He was quite thorough and said that he thought there may be something small on the front at the right but he wasn’t sure. He showed me another image which had reverberations on it. He said that was where I had moved during the scan. I explained how nervous I get and I am slightly claustrophobic. He laughed and said that the image had rings running through my head and that I wasn’t a tree, you couldn’t tell my age from it! Ha-ha….

Dr Plowman then dictated a letter and emailed a colleague which said that I was to get a report of my scan done and that they were to discuss me at the MDT on Monday. They are to consider doing gamma knife or cyber knife on that one lesion, if it is a lesion. He apologised profusely and said that he was so sorry that I have been messed around so much and that nothing seems ready when I arrive. He said, ‘Feel free to hassle my secretary, Emma, as I’m a stupid old man.’ No fear there. I will be on the case….

So I practically skipped out and rang Pete and told him the news that the five tumours are now, none or maybe only one! He won’t mind me saying, but he shed a few tears. What a relief. I will be even happier when I know the next bit but for now this is great! I feel such a sense of achievement and will keep going. Now I just need to know the body is following suit.

Today is ‘Good’ Friday… Not the Easter kind but the ‘Got everything to live for’ kind…. I feel like celebrating just a little bit! I love my friends and I love my family and I love all of you out there. Today, we celebrate small things because before you know it they are the BIG things!

Light and love everyone! XX

Under strict instructions to enjoy the sunshine! Oh go on then…..

Isn’t it beautiful weather! I have been under strict instructions from the Bear that I am to sit in it and get my vitamin D boost. No arguing there. Today is glorious. He rang me on his way to work after going to the gym and suggested I do my ‘rituals’ outside today. So up I hopped and got my meditation mat, then did some yoga stretches followed by a kettle bell routine from YouTube. (Don’t I have the best husband in the world?) I am now full refreshed and soaking up the rays. It feels a bit weird though because there are other things I could be getting on with but i figured they will still be there tomorrow.

I have been a little bit productive though; sourcing builders, booking them in and so on. Since my treatment room is currently out of service it gives me the opportunity to get it sorted in there. I have been putting it off for ages.
Monday morning I was up with Pete. Now let me tell you, I hate getting up early! It was cold and dark but I got on a train London bound for an MRI scan of my brain at St Barts. As usual I was super early (Not one for being late if I can help it), however it was lucky I got there early seeing as the underground trains were all severely affected by a signalling failure at Edgware Road. I stopped for breakfast at Beppe’s Cafe ordering my usual green tea; he said in true Londoner style, ‘Your Barnet is growing back nicely!’ This tickled me pink. He asked how long it was since I saw him last and I said about a month. He remarked on how quick my hair was growing. Bless him. I had no idea he would remember me. That put a smile on my face.

As I was early there I thought I may as well check in for the scan. You never know they might see me early. Well I was seen early for the cannula to be put in then waited for about another hour before my MRI.
I was pleasantly pleased that I couldn’t hear a thing whilst having the scan and I thought I dealt with it quite well. I have no idea why I am claustrophic of that machine! Once done I hopped up and was back home in a few hours. No drama.

Whilst lazing around I have had a chance to think and I have been thinking about getting fitter and stronger. I have decided that getting fitter and stronger is a must, plus it also helps with the way I look and being a woman that feeling will always be there. I also want to do lots of drawing and more knitting. Having finished my second baby blanket, this time all alone, I want to do more! Back to the knitting shop i go for more colours of wool to choose from.
I have also been thinking about working a lot recently and having lots of new enquiries. I am such a lucky girl and I know this, and feel grateful every day that I don’t have to work presently, BUT, I don’t think I want to return to work either?! Is this terrible of me? I do feel guilty when Pete is working his toosh off and having such demands and stresses, but I really want to enjoy being at home when I am here and work hard at feeling good about myself inside and out. It’s mad to think that it is April already and that in only two months I will be forty. I plan on enjoying this summer.

I have been emailing with the secretaries at my hospital today. I am trying to organise a CT scan for the week after next as Dr Nesselhut wants to know what is happening before he does the next lot of treatment. I thought it was already being booked as I had asked in March. Anyway hopefully Ii will get the appointment I need in time for my next visit to Duderstadt. I have also just found out they are offering artemesinin, B17 and DMSO. They have confirmed it. This could be something I will add on if they say it is fine to do so.

Apart from that everything has been great. I haven’t experienced any more headaches or visuals or anything since I had that migraine last week. I think Pete was right when he said that it was probably one of the tumours being attacked after having nivolumab. I blinking well hope so! All I know is that i feel great. I am back down to St Barts Friday morning. I am assuming they will have results for me and then I know what happens next.

For me right now, I am longing to have a cuddle in the sun with my Bear and I hope he gets home earlier today. As its April the sun isn’t’ high enough in the sky yet and we lose the sunshine before Pete can get his dose of vitamin D.

X

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….

Letting go of the niggling thoughts…

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

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

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

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

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

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

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

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

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

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

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

Henna Crown fit for a Kitty princess……

It’s officially the festive season… Now its December we have got our Christmas tree up and the house is feeling fully festive! I am actually quite excited! I’ve had a few days at my mums and conquered the Christmas shopping and have now completed the wrapping of all the presents. What a mission. But it’s now completed. The cards have been written and posted…. Phew…

Health wise I have been plodding on doing all the rituals and taking a handful of pills and potions every single day. Things are getting easier in that area. I know it’s all a mental thing. It’s the thought of taking them that makes me want to be sick.

Dietary wise I am still eating what makes me happy. I figure that forcing myself to eat what is apparently best for me isn’t currently doing me any good. I am putting on weight which is a good sign.

Yesterday I had an MRI and CT scan. It’s been two months since I was diagnosed with brain mets and I haven’t had any headaches and I don’t have any chest symptoms such as that pesky cough. Even after having had the MRI and slept last night, I didn’t experience any headaches, which the MRI can cause. My head was throbbing quite a lot whilst having the scan but the lack of headaches has to be good news! I have been taking my concoction of drugs and supplements and my regime is quite extreme when I am at home. Pete did say to me my only job these days is to get better. Right oh! Results, I hope, are going to be given to me next Tuesday when I see Prof Harris in clinic.

I am still waiting for the results of my tumour which has been sent to St Barts and now to the U.S to see if my tumour expresses the protein blah blah blah… whatever it is, it still hasn’t arrived, HOWEVER, I did receive a message from the lovely lady at St Barts saying I may be able to get on the trial even if I am negative.. Hmmmm, interesting…. I still hope obviously that my tumour is positive. That would be a great outcome and the trial should be successful for me. I was asked to go to London and have ECG, bloods, and more scans done in preparation for me starting the trial.

Despite me having scans here in Oxford I still have to go there. I explained that I am pretty hectic the next few weeks and over Christmas so it has been agreed that I will go down and do all that in a few weeks then aim to start the trial in January. Let’s face it; I am yet to see what Prof Harris has to say. You never know, all the stuff I am currently doing could be working, plus I am due back in Germany for more treatment in a week or so with a little sneaky trip to the Christmas markets. Well you can’t expect a German bear to miss out on a bratwurst and gluhwein!

Today has been an exciting day. I went to Selfridges in London and met with Pavan, a henna artist. Actually she is the world record holder for being the fastest henna artist! She did a henna crown on my bald head… I was a bit nervous as it was being done at her henna bar in the middle of Selfridges and I wasn’t sure if I would like it or not. But seeing how confident Pavan was and how friendly she is, I totally trusted her. She said she would make it pretty and use glitter and gems.. I was totally sold. I love being glammed up and I really want to learn how to do henna crowns so that I can do them for other ladies in my position, hopefully at the Oxford Maggie’s Centre and at home here.

It didn’t take long at all and I also had a bindhi applied. I am thrilled with it and so were the spectators that had gathered round. On the train home an elderly lady asked if I was going to a photo shoot. When I said no she said that I looked amazing and should have a photo shoot! Bless her.

The henna crown lasts about 10 days and then fades off. I can’t wait to give it a go myself sometime. For more information on Pavan and her work please go to her website; http://www.pavanonline.com/

Here are some pictures :

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With Christmas coming there are so many people to see and many celebrations to be had. This weekend is crammed with fun with friends, starting on Friday. I can show my head off with pride.

Hoping everyone else is feeling the love, light and Christmas cheer…. XX

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

Results!!!

It’s been a few days and I didn’t mean to keep everyone in suspense. I attended my clinic appointment on Tuesday fully expecting to get my scan results from the scans I had done last week.

Pete met me there and we didn’t really get time to talk or be nervous as we were called in straight away-thankfully. Sadly Prof Harris wasn’t there so we saw Nicky Levitt, whom in the past wasn’t my favourite consultant. She seems very airy fairy and sometimes a bit aloof which isn’t helpful when asking questions. But I have seen her recently and actually quite like her. I get the feeling they are starting to understand me and she said things like, ‘Someone like you knows their body, so you know whether something is right or not.’ This surprised me.

Anyway back to getting the results. As per usual she wasn’t prepared; the computer wasn’t on and she had to wait, then search for my results then get the printer working… It wasn’t a biggy so I just sat patiently.

The news was fast and simple really.

The MRI of the brain showed further improvements in the tumours and no new ones. Woohoo! This is a relief. It’s hard to know if I am getting symptoms sometimes with the little flashing light I get in my eye but this really did fill me with hope.

The CT scan showed further reductions in the tumour in my hilar lymph region and all other lymph nodes are now under a centimetre in size! Yes!

All lung metastases have remained stable or reduced in size in fact several lower lobe lesions have resolved completely. The rest of the lungs good with no effusions or pleural thickening.
The adnexal lesion, which they said could have been cancer in my ovary, is no longer there! Boom!
The T8 and T9 lesions are still sclerotic therefore non responsive.

Overall; a bloody good outcome. Of course I never seem overly excited or astounded. I am and was, thrilled with the news but I always hope for more and wish if only it was a bit better. What is making it work? Can I make it work better?

I knew there had been a good response and some reductions in my lungs because Prof Vogl had already told me but I desperately want those gone in my lungs. Now I know I can hear Pete crying out, ‘Some of them have gone completely!’ and yes I am chuffed to bits but what about the lymph nodes and those few big ones! I want them gone. If I could get rid of the lymph node tumours then I could have laser surgery by Prof Dr Rolle in Germany. With them in my lymph the doctor refuses to do the surgery.

My immediate thought was that I must also go back to Frankfurt and have more TACE with Prof Vogl. It clearly works. I am still reticent to go and have more infusions with Dr Seibenhuner but never say never.
So my next move in this game is that Peter and I are back to Germany next week. I am going to see Dr Nesselhut for my usual NDV, Dc therapy and hyperthermia with IL2, but this time he is going to be adding another drug to it and I have asked all my doctors and they all say go for it. Dr Nesselhut said not to have any chemo in the meant time. It’s a leap of faith as I believe in combining treatments but in order for this to have a chance then I will listen to the Doctors advice. I am filled with excitement and fear as I don’t want things to go in reverse but I have a good feeling.

We said to Nicky, that we had been told by the doctor at St Barts when we were there in October, that when things looked stable and as long as there were no new ones that I could have gamma knife treatment on the tumours in my brain. Quite out of character, Nicky picked up the phone and requested my scans be sent digitally to St Barts. She said she would get a letter sent to them too and make a request for me to have gamma knife ASAP. Pete and I were quite taken aback. I am not sure how quick a response we will get, if any. But I will keep on the case with the secretaries and make sure I get seen. It would be amazing if I could get those brain mets gone!

We discussed the fact I had postponed/cancelled Eribulin. She said she had a hunch that it would be accepted by NICE in a few months as it’s too good to let go of. This would be good if I ever need it.
So that’s that… another result and another push forward to making things even better.

This week has gone really quickly and it’s sad that Mum goes home on Saturday. We have had fun shopping and today we had our nails done. She has also been teaching me to knit too. I think I am getting there although reading patterns is like reading a foreign language. But I already have a repetitive strain injury! Haha! My forearm is huge and swollen and I am in a lot of pain. Can you believe it? Hilarious….

Never felt so grateful and thankful.. and I did it!

It’s been a week already and I cannot believe how much has happened and how I have felt. As I mentioned before we were going on a skiing holiday and I was very nervous as I hadn’t been on top form, to say the least.
Well I needn’t have worried. The day we travelled to our Austrian Alp destination everything went swimmingly. Flights on time, luggage came out first, taxi waiting for us and the weather was gorgeous, therefore the traffic was brilliant. Our hotel welcomed us and we immediately got our room. Then we organised our skis and sat admiring the sunshine and view. We couldn’t wait to get skiing the following day.

This wasn’t to last…. a blizzard arrived over night. The temperatures plummeted and the winds were blasting. But we were on holiday, we had to ski. I must be mad. But we went out in extreme conditions for two days on the trot. Our faces were whipped with the wind and I couldn’t see a thing. One by one the chairlifts were being closed and skiing became near on impossible. But I didn’t moan, believe it or not! I just thought it will be fine. Pete is an amazing skier and I knew he would take care of me. We had a few falls but nothing major. Bizarrely enough I didn’t have any sickness and my appetite was good. Pete was a bit disappointed as he so wanted to have a good skiing holiday. I tried to keep his mood buoyant by bursting into song throughout the day. My song of choice, ‘Do you wanna build a snowman!?’ from the movie Frozen. It stuck for the whole week. It was ok though, we had a spa in our hotel which had a really cool outdoor pool surrounded by snow…. We used the facilities to the max.

Tuesday everything changed. We were promised better temperatures, lighter winds and even some sunshine. And then every day got better. We ended up having four days of glorious sunshine and perfect ski conditions. I can’t remember being so happy. The resort was lovely and we skied up to 30kms some days. I was out of breath but mainly through exercise, altitude and the adrenalin pumping around my body. I cannot believe I could actually do it. I didn’t think I was fit enough and I certainly cannot believe that only the week before I was light headed and feeling sick. I laughed continuously for the whole week, mainly when I was following Pete down a mountain and he accelerated so fast! It was brilliant. With weather like that we got to sunbathe on deckchairs and take in the view too.

On the last day Pete decided we would tick off all the pistes on the map that we hadn’t done this meant doing the hardest runs. I’m capable of doing the black runs, which are the hardest, I just don’t have the confidence or guts usually. I did them with some difficulty but then came a run that wasn’t technically a run and before I could change my mind I was screaming my way down the mountain and scaring another skier to death almost. Once I reached the bottom I was shaking all over! I never want to do that again… Pete just said he knew I could do it….Hmmmm.
The very last day and the very last piste I cried….I’m such a softy but I really felt so emotional. I couldn’t have been more grateful and thankful for having had such a wonderful week with the love of my life.

Being back is a bit strange although I do love it here. We slept like logs on our first night back. That was one thing we didn’t manage very well whilst away. Both of us hardly slept. We would wake in the middle of the night thinking and having weird dreams. I have always believed that the mountains give off a strange energy and I have always had trouble sleeping there. Now we are home I feel great at night…haha. I love my bed, I love my bed, I love my bed!
In my sleepless state my mind was rushing all over the place. I thought a lot about setting up a charity called the Grant Foundation, as Pete’s father died of cancer and both Pete and I have had cancer. We discussed trying to set up a clinic where others could obtain some of the treatments I currently have abroad. Of course this needs a lot of work and research. We also discussed raising more funds and thought maybe a ski challenge would be apt. Maybe skiing across the Austrian Alps within a time frame….Gulp… This needs some thought!

The fact I have been so well it did make me wonder if I should return to work seeing as I am hugely capable of getting on with things as I showed in Austria, but  having spoken to Pete I have decided to really try to recuperate. It was only a few weeks ago that I was feeling dreadful. I still don’t know if my bloods have improved and this could take time.

So what’s in the pipeline?
Today I am off to hospital for an MRI and CT scan. It’s only been about 10 weeks since my last but I need to know what’s going on before I can start any other treatment as well as wait for my bloods and immunity to improve. I don’t get the results until next week.

I have messaged Prof Vogl and advised that I will need to wait for this to happen until I go back to him again. He has urged me to go back but then he would.
Good news is my weight has increased, from eating so much Austrian hearty food. This is essential for me and I have to keep eating!

I have decided also that I want to start having therapies again. I had stopped for a long time but I just didn’t feel like receiving any treatments. But now I am ready to be balanced and strengthened and pampered just a little too. Tomorrow I am going for reflexology. I cannot wait.
Here a few snaps of our Austrian adventure…

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What a difference a day makes…. From no visibility to pure sunshine.

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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…..

A weekend donated by The Willow Foundation.. heavenly…

 Bear and I have had yet another amazing time away together. This time it was the two of us in rural Cornwall. We stayed at Forest location in a wooden cabin just for the two of us. It feels like we are away a lot at the moment but we are simply trying to get the best out of life and at a normally dreary time of year. I simply can’t believe we only got back from Antigua about a week or so ago! It’s all a blur!

The reason this weekend was so good and memorable was that it was donated to me and Pete by The Willow Foundation. I was informed of this amazing charity by one of the ladies that did the Prima magazine shoot with me in the summer. She told me that I could get a ‘special day’ because I was between the age of 16 and 40 and have a life threatening illness. I was surprised that I could get something nice so I applied and the ladies at the foundation were brilliant. I had to verify my illness so the foundation contacted Prof Harris and it went from there.

My special day was chosen by me and I could have had pretty much anything I wanted to a degree. But I really felt that I wanted something low key and earthy. I booked it for January as I felt there wouldn’t be much on but how wrong I was! But it was definitely the right time to go.

Cornwall is so beautiful but at this time of year when it is crisp with blue skies yet cold… Pete and I just loved it. We thought it was a good opportunity to get started with my exercise and walking.

I have been feeling better and gradually doing away with the sickness and getting myself into taking supps and meds again. Since seeing the consultant last week who pretty much said it is probably my brain causing the nausea I thought, Heck it is! I have felt and allowed myself to feel nausea. I believed it was me being neurotic.
Since then I have been eating… a lot and have now got a formula that works for me to get most of my usual supps and meds inside me. I’m not doing all of them but I am doing what I think are the important ones. I will increase as I go along. I have been having the GcMAF yoghurt with blueberries and having a green juice, even though the last few days it has been a bought one so has some fruit in it. But the way I see it is its fresh, it should be building my iron levels and making me stronger.

I am unfit and it was proven at the weekend. We did some serious amounts of walking and where we had so much rain the coastal paths were very difficult to contend with. Luckily we were prepared with our clothes as we got covered in mud! it was a good start though and I don’t think it will take too long to build my fitness back again.
It was really refreshing not having communications either. There was little 3G and no Wi-Fi until we got to pubs nearby! I didn’t miss it at all.

The cabin was just lovely, as it had its own hot tub and stove fire. When we returned each day we jumped in the hot tub usually with very little on but a woolly hat! It was so relaxing and we took all our own food so ate what we wanted and chilled into the evening.

We discovered the local areas and did more walking and to be honest the long weekend flew by. Pete and I just felt so much love and happiness. It was just what we needed. I would highly recommend Forest Holidays. http://www.forestholidays.co.uk

So we are back and I am having a great day! I reluctantly left my wonderful bed, which is even more wonderful since I changed our duvet to a 13.5 tog! Oh my… it is now on par with the Zum Lowen’s beds! I decided it was time to have a good exercise and popped on Davina McCall’s new 7 minute DVD. 21 minutes later I felt good and pleased with myself. The day hasn’t stopped being productive since then… Apart from other chores I have started ticking off some really annoying chores such as sorting out cupboards…I hope I feel like this tomorrow as I have so many more jobs that could be getting done!

There has been a lot of research coming recently about new developments with TNBC. It is so frustrating as it all seems so far away for us humans to be using. Pete is still soldiering on getting more info and hope for us. I hope that my next scan shows things are still going in the right direction.

I am nailing the bones now I am taking Denosumab. I hopefully have nailed the brain mets by having radiotherapy and continuing to have supps etc. I am nailing the lungs and lymph with continued treatment in Germany; another one booked next week and then I will start Eribulin. Best to keep it on its toes and hopefully the stronger I get the easier it will be to manage.

I know the importance of exercise and now the days are getting longer I think this will get easier. It’s certainly easier to wake up with a little bit of daylight coming through the shutters. Poor Ol’ Pete though doesn’t have that luxury.. 5am starts are hard… And bless him he brings me hot lemon and an apple every morning. It’s paying off though as I have put on four pounds this week.

Thoughts are going to my 40th which is later this year. I don’t want to over think it and although initially I said I wanted to celebrate on a yacht in the South of France, me, being a woman, has changed her mind! I want fun but I don’t necessarily want to spend a fortune and put people under so much pressure. So any thoughts for a memorable birthday please message me on fb! Ha ha!

Here are some lovely photos of our weekend away supplied by The Willow Foundation. I can’t thank them enough and urge anyone within the criteria to contact them.

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