Booked… for Wednesday!

I had a call on Friday afternoon from Nichola at the Gamma Knife centre. She explained in huge detail what had happened at the MDT last Monday. She described how they saw my images and all of the doctors present were ‘astonished’ at my results. Only two months earlier there were four lesions present but now there is only one tiny one present in the frontal lobe, which qualified me for gamma knife treatment. She said most of the doctors, all except Dr Plowman, were not ‘fans’ of whole brain radiotherapy. Apparently it takes up to six months for whole brain radiotherapy to really have full effect. Nichola said she could understand that must be very frustrating. Anyway they would like to do the gamma knife treatment this Wednesday! Argh! Sometimes it is a case of be careful of what you wish for, because as much as I know this is really important and I want nothing more than to be free of brain tumours, the fear of having the treatment is daunting. As usual I am probably over thinking it, but knowing I have to have a head brace that punctures my skin in my head to be fixed in place fills me with horror. I do have local anaesthetic before they fit the head brace. Then there is of course the MRI machine and being strapped in the there with a head brace for about half hour or more. Gulp… I’m being a pansy. I know it will be fine.

Tomorrow I have to attend a pre assessment appointment when I can ask any questions and get the ‘heads up’ on all the info before my procedure on Wednesday. It’s an early start on Wednesday. We leave home for around 5am and start having the treatment at 7am. So it’s a busy week ahead as I also have a CT scan booked on Friday at my usual hospital. Then next week if radiology are kind to me, I will get my scan results at my clinic appointment.

This weekend passed in a flash and Pete and I had such a busy jam packed time. Doing what? Gardening and house chores. Sounds grim? Not for us. I love the feeling of achieving something and our courtyard is beginning to look a little bit Tuscan. That’s our aim…We just need the weather to match!

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

Passion…..

 Tempers flare and frustration sets in when we should be able to get onto trials and “experimental” or non-accepted drugs in the UK that we are otherwise “allowed” to pay for and receive. That’s what’s happened to Pete right now. Probably at the end of his tether having to spend over a week with me and not being able to give his business his undivided attention too. Anyone that knows him, knows how ‘passionate’ he can get. I don’t blame him but it can be upsetting to see him feeling like that.

We left home over a week ago for treatment but also to spend time together over the Easter break. To have some special time and to make treatment trips more fun and memorable. That’s what he does. He tries so hard to make things good, fun, loving and most of all special. He spends all his time thinking of others, putting their needs first. The thing is, things never really go to plan.

We travelled through France to Switzerland and then arrived in Austria. Pete had worked out that we could slip in a ski break between appointments, he had meticulously planned everything. This time of year you hope/expect to have sunshine and those gorgeous blue sky days skiing. Our thoughts were, ‘Will there be any snow left?’ That would be sad if there wasn’t. Hahahahahaha. How funny that thought is now. We arrived and a storm set in. The resort had over four metres of snow in a few days! It was so bad some days we actually couldn’t ski and when the sun finally did come out they decided not to let us up the mountain for fear of avalanches!

How frustrating and disappointing life can be at times, more so for someone like my Pete. He just wants everything to be perfect. He just wants people, and especially me to be happy. (I am by the way, no matter what he does.)We then had a 7 hour trip (stopover in Munich) and are now in Germany and I am having treatment. The weather is better now, but it snowed all the way here. We hope that it stays dry for our long drive home to ‘The Shire’ tomorrow afternoon (11 hours). I don’t hold out much hope though….

Pete’s frustration this morning is due to the screwed up medical society. Where to start. The waste of money on treatments that are proven not to work, the administrational shambles, the obvious control of the Pharma, it goes on and on and people are dying. We are not talking about gastric bands and boob adjustments. Pete was in tears over an Alzheimer sufferer this morning, diabetes, heart disease and of course cancer – these are challenges that we are facing at the speed of a striking sea slug and still people are dying.

We have been talking over new developments such as targeted DC therapy, Nivolumab and Ipilimumab and its so frustrating when researching to find they have been trialling these drugs and treatments for nearly four years. The sticking point of them is the cost NOT the efficacy.

Isn’t is sick that we live in a world where they hold cancer patients (and other terminally ill) to ransom? I’m being told once again that I may not be able to get onto a trial because my recent scans show that I have had improvement on the treatments that I have had. So because I paid for TACE, saving the NHS around £100,000.00 in treatment costs and it has been working, they could decline me from getting on their trial. BUT I CAN HAVE IT IF I PAY FOR IT! This to me makes no sense.

I have been having treatment abroad, paying for it, and because that shows it is working, they would turn me down on an NHS trial in the UK. It’s so short sighted. Can’t they see if the trial works on me, with the other treatments I have been paying for, then I am not only helping myself but helping the Company (In this case Bristol Squibb Meyers) and other patients get a treatment that could be the cure, the answer, or at the very least the treatment that will be a winner for most?!

No point on dwelling on it… but so corrupt, mismanaged and such hindrance in progressing for a cure. This just reminds me how hard all of this is on our loved ones, our nearest and dearest. I’m so lucky to have someone who cares so much, but no one really realises how hard it is for them.

Pete has devoted his life to me, his family and friends and his business, with all the responsibility that brings. When he is there, he works such long hours and never mentions his home life or troubles, he says his job is to be “positive”. That’s what people see.

What they don’t see are the sleepless nights, the worry, the guilt at not being there whilst taking me, his sick wife, for treatment once again. Social media is amazing but it does only show the good times. People have even said to Pete “have a nice holiday” and think we are living it up abroad. He just smiles and nods and continues to post himself smiling in ‘happy times’ photos.

But money doesn’t grow on trees. Pete has to be an innovator, motivator and different in outlook, always thinking of ways to grow and differentiate the business, but most of all ensuring that it doesn’t fail. He has many staff to care for and they have their lives. It’s a constant juggling act.

But we still try to maintain a normal life. As normal as it can be. We both long to be at home. To have routine. To be part of things we have built up for years. We don’t want things to slip through our fingers after all the hard work we have put into it. It’s hard keeping abreast of everything and heartbreaking when things don’t go to plan.
If I could say one thing to my younger self or close friends and of course you as you are reading this, it would be – Never take your lives for granted.

Being at home can be monotonous but there is nothing like home when you are forced to be away so much. Right now I’m sat waiting for treatment. I have no idea if it’s working, but I do know it takes a lot of time, money and effort for me to even be here. This is something I’m eternally grateful for and I will never take for granted either.
When you are bored, tired and wish your life was more exciting… think of all the survivors out there and ‘put the shoe on the other foot’. I only hope everyone has at least one ‘Pete’ (my Bear) in their life. It would make your life better in every way…. My kuschelige Eheman.

P.S. Pete and I have laughed so much on this trip. It’s not all doom and gloom as I always say…

Light and Love

XXX

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

I didn’t win the lottery…. No surprise there then!

I didn’t win the lottery….No surprise there then. My luck hasn’t changed. Or has it?

It has been a weekend of tears, and love and support and so many emotions I don’t no where to begin. Pete and I decided that we would have a weekend of not getting out of bed. That lasted all of about 2 minutes. As usual we couldn’t help ourselves especially as the weather ended up being really lovely and I always feel that we should at least get out in the day light whilst the weather permits. We did have plenty of time to relax and although sleep was a bit a hit and miss we both felt relaxed. I had one good night one bad but I was pleased that I got any. I have been walking around in a blur. Now this could be down to the fact I am on a cocktail of steroids and also codeine, in the hope that my headaches will pass as well as the cough. Interestingly the cough is annoying me more.

This morning Pete and I went to the hospital this time to collect my CT scan results. As Pete called it, Part Deux.
I don’t know how I thought it would go but I didn’t have any feelings either way about it. I think that I thought things couldn’t really get any worse. And they haven’t really.

The good news is there are no new ones in my bones or abdomen and that the ones that are in my lymph nodes and lungs are actually a mixed bag.

The ones that have been blasted with radiofrequency have actually got smaller and that seems to be looking good.
The ones in my left lung have stayed the same.

Then there are new ones appearing albeit very small in my lung. There is also pericardial effusion around my heart.
The right hilar lymph node is necrotic but they cannot tell if that is because it is growing quickly. In fact all of the ones in my lymph nodes are a bit bigger.

Prof Harris has suggested that I get the gamma knife treatment all sorted and then that should make that better. There is of course no way of knowing if that means they won’t come back but he suspects we can keep on top of it. He does think we should opt for a systemic treatment like chemo but he said is up to me. He suggested getting started on something like carboplatin and gemcetibine and we thought starting the consent forms was the best way to go especially as it will take about three weeks to organise and by then my brain treatment should be sorted.

In the meantime Pete and I already have a plan hatched to go to Frankfurt for TACE by Prof Vogl. Since getting home I have had a stream of emails from my Europeans friends and they have been advising me that timing it with treatments to Dr Nesselhut would be highly synergistic as well combining it with insulin potentiated therapy. I think this could be a really good route to take. We just need to organise that now too.

As expected I am still waiting for results from the MDT that occurred today at St Barts. We told Prof Harris that Dr Oliveros had said we can only have it done if there are three tumours of less. He couldn’t believe it. Prof Harris has changed and I believe it is because he has seen so many changes in the cancer world. He is so much more open and friendly now too.

As much as I don’t relish going on chemo it is definitely something I would do but I will lean for TACE first. I don’t want to spend any more money but I do want to try other things and I do want to give it my all.

I am bit disappointed that I haven’t yet had a call but I trust that Dr Oliveros will call when the time is right.

I suggested to Prof Harris about a trial that is happening at St Bart’s that my friend has told me about. It is using immunotherapy and has been raved about apparently. He thinks I won’t be able to get on it because I have already had immunotherapy but he said it is worth a try.

I think I will continue with the immunotherapy at the London Clinic. I still think that things are going well in that department. The thing is if these brain tumours hadn’t appeared it would still be going in the right direction… sort of…

I have been cancelling clients today and been making a plan for taking more time for myself… The thing is until I get an answer from Dr Oliveros I still feel aloof.

I felt really loved today at hospital. Pete was surprised at what staff in the pharmacy and the nurses who work with Prof Harris were all like with me. The thing is I have been going there a long time. They all bent backwards for me and made my life as easy as possible. I am feeling really loved.

Deflated and unsure…

Pete and I went to bed early last night. So early we had about 11 hours sleep! Boom! I love the Zum Lowen’s beds. Dragging myself out of the warm and comfy slumber this morning I scooted to the clinic to have my bloods drawn ready for up and coming visits. I was due to return at 11am for the next hour long treatment but as they had time I had it all done at once.

I had a chat with the nurse whilst lying there. She was telling me how much easier things are now.e asked if I remembered last summer with all the Portuguese patients. Do I? Boy yes. It was so busy and many mistakes were being made.

I asked why it wasn’t as busy now. She said it had calmed down since people had started abiding by their appointments. She said that for a shirt while people would stand there at the counter demanding an appointment. They had travelled from Portugal without having an appointment and cry until the doctor saw them. It’s amazing what desperation does to one. The staff would start at 8am and finish at 8pm. I guess that’s busy over there.
Thankfully peace had been restored.

An hour or so later we met with Dr Nesselhut who was lovely as usual and this time had a doctor from Amsterdam sitting in with us.

We explained again the scan results and he seemed concerned by the necrotic ones that were active in my lymph nodes. He said that he would like/expect no changes so if the next scan still showed a lot of change then we need to let him know so that he can change our protocol. Pete mentioned the fact that I’d had head/neck ache for sometime and Nesselhut insisted on getting it checked out by way of bone scan. He said it is probably nothing but better to be sure… Not what I wanted to hear.

Pete also mentioned my cough and explained Prof Harris’s thoughts on it. Nesselhut was less concerned but suggested codeine at night… Not sure why.

A lot of conversation was banded about things that could be done and what was inbound. He talked a lot about anti pdl1, pd1 and more. We said we thought I had already had that. He said in the vaccination, yes, but not injected directly into me. He said the quantity required would result in the cost of £100,000! He suggests it works better because when administered in the vaccine we are just training the dc cells, whereas administering it into the body, it attacks the protein cloaking the canSer and therefore has a much better response. They have high hopes for this.
Pete not knowing the price asked when we could start that treatment. Nesselhut said not yet then told him the price….. Jaws dropped. Let’s hope I don’t need that then!

Whilst chatting about triple negative Nesselhut said that they had amazing results for those who had not waited till they metastasised for dc treatment.

He says the success rate for those who have the treatment is 100% over 5 years. If only I knew about his work before the canSer had metastasised.

For someone like me he said there was a 30-40% success rate over 5 years… Well I guess that’s me in that 30-40% then!

This is great news for any TNBCers out there. It isn’t the worst thing ever to have that diagnosis and despite needing funds if you can obtain them, then go for it. It’ll save your life.

I had my vaccination intradermally and intravenously. My arm is currently as big as a balloon. The biggest reaction yet. I feel fine. I am longing to be at home but then who doesn’t when you are sat at an airport.

Thoughts have worried me this afternoon. I guess if I am being ever alert then I know in my gut that I should get my headaches checked out. If I am being less cautious then I want to wait.  I have neck ache. It feels like I need a bloody good massage. The thought of having an MRI scan fills me with dread.

Whilst having a green tea this morning I suddenly felt sick and had to rush to the loo where sadly I vomited. What caused that? Don’t know….

Last night I spent a little while trawling through FB, as you do. I saw a post on The Huffington Post. I’m not one to follow blogs, bizarrely enough on other canSer survivors, but this one caught my eye. I read it to Pete and we both cried. Not wanting to ruin it for you, the outcome isn’t all happiness and joy but the power of the internet has meant her post has gone viral and her husband has written to thank everyone now that she is gone. I’m reading far too many posts of late of women dying before they are 40, not just of breast cancer but bowel cancer and more.

Here’s a link to Charlotte Kitleys’ final blog that she wrote before she died : HUFFINGTON POST

Followed by her husbands reply; Well, it’s not quite the end…

I don’t think Charlottes’ post was all doom and gloom but full of love, hope and happiness. I will take her advice and run with it.. I advise you to do the same.

Night all. Hopefully I’ll be home soon tucked up in my favourite place with my favourite person plus the little furry one.

Xx

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.

art1

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

Day one of our trip to Switzerland feeling nervous…

The day started with my cat sat on my head licking my forehead. What a wonderful way to wake up! We headed to terminal five and caught our flights, then hire car to the hotel in Bussigny-pres-Lausanne, which will be our home for the next week. Thankfully the hotel is lovely (our room more so now we have a bath!)

I felt really nervous this morning. I’m finding it really hard to contain my feelings despite using breathing exercises. I feel emotional and tired. I’m physically over the sickness bug I’ve had all week and happily eating. We decided to be decadent and eat smoked salmon, drink champagne and do some luxury shopping… that calmed my nerves!

Now we are settled; lap tops set up, Wi-Fi connected and ready to go.

We are going to do a reccy and I think another early night. Tomorrow we are going to investigate the area and enjoy our weekend before the clinic at 9am on Monday.

Au Revoir!

A quick visit to Leipzig

Another night of very disturbed sleep is leaving me with very sore eyes. I have no idea why I feel this way as I should be very relaxed with all this time on my hands but I guess that’s often the way.

We checked out of our hotel in Duderstadt this morning and I attended my appointment at the clinic. Today I had hyperthermia and an injection of Newcastle disease virus.

I was intrigued as always to see the different faces now at the clinic. On my way out I noticed more Portuguese people and one man in a wheel chair with a film crew equipped with a large camera and tripod. I guess they must be making a tv programme on it.

We drove a few hours east to a city called Leipzig. This is half way to our next destination but to break up our journey. We have a few days until my next round of appointments at the clinic. Rather than stay in Duderstadt we have taken the opportunity to take in more of Europe. So far today we have seen where Bach is buried, where Goethe drank and wrote Faust. There is a statue of Goethe and Mephisto. It’s meant to be lucky to stroke Goethes foot. It’s quite a nice place but it’s a good thing we are only here for a day.

I’m going to take this opportunity to try and rest… I’m looking forward to our next stop!

European tour- days one to four

We’ve had a brilliant few days. Driving all over Europe never gets tiring. Not for me anyway! Pete doesn’t seem to mind either. This weekend was spent walking and taking in Amsterdam. It’s not a place I’ve ever really had a desire to go to but I would highly recommend it! Unsurprisingly the red light district and the cannabis coffee shops aren’t why it is so appealing! There is so much to see and do and the coffee shop culture is lovely. Pete did some research and we hunted down many watering holes that had a lot of history from the oldest to the famous frequented by Rembrandt. The only down side to the weekend was the state of our feet! They are very sore despite wearing apparently comfy shoes.

Yesterday we made our way from there to Duderstadt stopping on the way in Munster. Pete lived near Munster as a child so was intrigued to see if he could remember it all. We discovered an authentic German eating house and put a big old smile on Petes face by having a hearty German meal.

This fuelled him up ready for the next leg of our journey to our usual hotel for the next three nights. Knowing Duderstadt as being a very sleepy town we were hugely surprised to find it heaving with people and stalls. Apparently we had missed the Apples and Pears Festival which is an annual event here. We did manage to have a quick scour and take in the atmosphere before ey all packed up as well trying some of the local delicacies and delights!

Arriving at our German home it was such a pleasure when all the staff seemed genuinely pleased to see us. As usual the room is great and we came really prepared with movies on a USB stick. It’s great staying in a hotel but sometimes it is nice to have home comforts so of the next three nights we are able to watch a movie all tucked up in bed with a cup of tea.

We had an early start today with an appointment for both of us to have our bloods taken. They have to test my blood before doing leukerphresis tomorrow to ensure I dont have HIV etc. They did the same for Peter but also took 200mls of his blood as he is providing his gamma delta cells to me.

Now that’s done we have time today to mooch, do some work, write some emails and meditate.

I stupidly forgot my medication dispenser full of my supplements. They are safely with the hotel in Amsterdam. I am having it posted to here… But what an epic fail!I simply keep forgetting things!

I’m having a lovely time and just hope it stays that way.