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

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 :

5 6 7

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

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

The Bear is back…

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

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

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

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

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

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

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

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

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

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

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

What to report from my floating lilo?

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

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

What is there to report?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Xx

A tense journey but we can finally relax….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Au revoir!

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…

XX

16

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

17 18

Dining with Davina and my favourite ladies….

I had a brilliant ending to my week. Friday ten of us; me, my mum, my sister and some of my nearest and dearest friends went to a charity event hosted by my all time favourite person (other than my Bear of course) Davina McCall! I went to it last year and decided it would be much better surrounded by a table full of loved ones. There were 400 people attending, all women, so you can well imagine the energy in the room!

As part of the event we all got to have photos taken with Davina and she is so friendly and wonderful. It’s like you have known her for years and that you are personal friends. I showed her the card she had sent me and thanked her for brightening my otherwise crappy day following my visit to St Barts re gamma knife. I’m always a little lost for words and I don’t want to be really needy but I would love to have time to really talk to her. I love the fact my friends say that I remind them of Davina with my mannerisms. I’ll take that huge compliment- thank you!

We had a wonderful 3 course meal and then I bought the photos that had been taken. Sitting at the table admiring them (well actually criticising my hair! I look like Mr Tumnus from Narnia with horns! I’m not complaining really I feel blessed at the moment that I have hair, it could be gone in a few weeks from radiotherapy) I felt two hands land on my shoulder, and a voice say; ‘Ah that’s a lovely picture!’ Turning, it was Davina looking over my shoulder. I was thrilled!  I hopped up and she gave me a big hug and my friend took a quick snap on her phone.

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I don’t know about you but Pete and I have a list on our board at home of people we would love to invite to the ultimate dinner party. My number one guest is Davina McCall. Naturally. I bet it would be a great night.
The fact is everyone on the table at the event on Friday love Davina and they all loved spending time together. I would love it to be our annual event. Any excuse to get dressed up and have a good girly catch up. We laughed, talked, danced and cried…. We are girls. They cry a lot!art2 art3

I suffered for it yesterday. I would love to say it was probably from drinking alcohol, which I did indulge in but I simply didn’t sleep Friday night.

Of course I missed Pete. I chatted with my friend until 1.30am tucked up in bed but then a few hours later was awake with pains in my knees. This is new… What is going on? I took pain relief, a lot of it. And it didn’t touch the nagging aches. It’s so weird. One thing goes and another begins. I feel like a bloody hypochondriac.

We all stayed at the hotel and for breakfast bleary eyed faces appeared as we gathered for a right royal breakfast. I took advantage of it all! It’s odd though because I don’t taste things properly. I don’t have the same urges of what I really want to eat. I don’t have an on/off button. Days can be really exciting and full of clarity and others I can feel a mess. Take today. I woke up at 4am having had a day on the sofa yesterday. (Thank you Louise for getting me home and delivering me to my husband! Sorry for not spending time with you and your better half last night! I simply couldn’t manage moving let alone being any kind of decent company! Ha-ha!) I slept well up until then and then my mind was racing; in a good way.

I got up checked in online for our flights tomorrow and packed my suitcase. Then it all went wrong. I had the shakes, felt hugely emotional and can’t make out what I am meant to be doing?

I have halved the steroids and hope the things I am feeling will subside quickly! I want ‘me’ back. Luckily for me I was on pretty good form on Friday. I chatted for England, danced and laughed and stored those memories with my ladies in a big gold memory box in my mind. That’s a keeper I will cherish.

We have a big week ahead starting with an early morning flight to Frankfurt tomorrow morning. We are off to Dr Seibunhuner to see what infusions he may recommend then Prof Vogl on Tuesday for TACE number two. Then Day three off to Duderstadt for more bits and bobs then drive back to Frankfurt for our evening flight home on Thursday.
I have to say I am not hugely looking forward to it but needs must. If I was on better form then it would be all ok but it’s a struggle. I am in danger of forgetting things and I don’t want to keep moaning about feeling under the weather to Pete. This is so hard on him.

Look on the bright side. I do not have a cough, and at the moment no headaches or tingling! Yeha!
This morning it is beautiful outside. The sun is shining. It isn’t raining and nature was calling us. We went out to a  Remembrance Sunday service and said the Lords prayer and sang the national anthem. It felt good. I feel blessed for the many amazing things in my life. I mustn’t lose sight of that.

Pete is cooking in the kitchen…although we have just had a disaster. We decided to have a hugely anti inflammatory juice to give us both a kick start. Turmeric, garlic, ginger and chilli were the ingredients or ammo! Sadly it ended in tears. Literally. We both vomited! Ha-ha. And now I stink of garlic and maybe a little bit of sick! Urgh!
Life’s about trying… and God knows Bear and I are doing a lot of that!

Happy Sunday, you gorgeous people. X