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

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…

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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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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

When in Rome…….

The bank holiday weekend has flown by. It’s hard to believe it’s been four days since I last blogged. So much has happened starting with Friday evening.

I attended my friends Ladies Charity Garden party. As it wasn’t very warm it became a house party but all the same it was amazing. The turnout was great and everyone seemed to really enjoy themselves. There were a few surprises such as topless waiters and a pole dancer. That sounds weird but she was so skilful and elegant and the best bit was that she did a dance to a very special song that we call ‘our’ tune (First time ever I saw your face by Roberta Flack) After the dance finished and keeping composed throughout I got to have a go at being a pole dancer! It’s incredible the body strength required. I have to admit I secretly enjoyed it. The evening was topped off by the raffle. I was so excited by this as the prizes were brilliant and all donated by our friends and me. I didn’t for one minute expect to win anything- let alone four prizes! I actually put two prizes back in to the raffle as I wanted others to have a chance too. I ended up winning a night stay at Caswell House; http://www.caswellhouse.co.uk/ and, wait for it…. a pole dancing lesson! Ha ha! I am actually looking forward to it.

We don’t actually have the totals of the evening just yet but I will let you know shortly. I think we must have exceeded £350 which is amazing and all tots up my totals on my virgin giving page which still stands at £6153. I have been selling bracelets still so it will continue to rise.

Pete picked me up after the raffle had finished then we drove to Birmingham where spent the night before our early flight on Saturday morning. I love flying from Birmingham it is such an easy airport, except on Bank holiday weekends! It took us two hours to get through security and we almost missed our flight! Argh! The panic was over as we weren’t the last ones on the plane. The rest of our trip went smoothly. Pete had organised the whole thing to Rome (on my mood board of places I want to visit) and our hotel was immense. Before this we got chatting to an Italian guy who drove us to our hotel free of charge! What a nice guy….

Our hotel was beautiful and we were lucky enough to get upgraded to a junior suite. I have never seen anything like it. It was over two floors with to TV’s and overlooking the piazza outside with a fountain. We had champagne on ice waiting for us and we gladly started our stay with that!

The weather was glorious too on arrival so the afternoon was spent walking from place to place with as many stops along the way in little cafes and restaurants. We visited the Spanish steps, the Trevi fountain and more on the very first afternoon. All that walking makes you thirsty so we finished our afternoon baking in the sunshine in yet another cafe. Here we met a lovely couple from London and Essex. We got chatting and a few hours later we were still there with the sun going down.

We don’t half cram things into our little stays abroad. The next two days was spent walking everywhere sightseeing the usual things like the Pantheon, Coliseum and St Peters and the Vatican. One word – Amazing! And the change in weather didn’t even deter us. In fact it really rained quite a bit but not letting it stop us we bought his and her ponchos! We didn’t look like tourists- much! Ha ha! Throughout our visit we ate everything Italian and I indulged in ice cream and pasta and red wine… it was brilliant. And I didn’t feel guilty despite knowing my CT scan was looming in a few days.

I think my favourite thing was St Peters basilica. I rubbed St Peters feet.  The statue is beautiful and the feet have been rubbed so many times they are worn down. I crossed myself with holy water and we both had a little prayer. On our way out someone approached us and gave us a charm for a necklace and a card with a prayer on it to keep.Every little helps!

Our flight home was smooth and we arrived to bright sunshiny weather which the UK had luckily had a whole weekend of… I was so pleased for everyone that it wasn’t a wash out like our other bank holidays.

Straight home and I went to the back garden to top up my vitamin D levels. (It had to be done!) whilst Pete went straight back to work…. no rest for wicked… or saints for that matter!

Last night was lovely having our first meal back at home and it was all vegan. I miss eating like this and I instantly feel healthier. We had an early night and Pete got up at 4.30am this morning to go to work! I didn’t sleep very well after that so decided that I would spend my time visualising using every last minute preparing for today.

I got back into doing my exercise and other rituals and it feels good to be back. I put on a few pounds whilst away… easily done when all you’re eating is carbs!

Today was my ct scan. The first since February and I have been feeling really confident about it. But then I let my head take over. I can’t help but not feel over confident. I know I haven’t had any sensations inside and feel really well. I hope my gut feeling is right. When I worry I can’t tap into my intuition. My head starts thinking all sorts of things. My ct scan was easy and quick as usual. But the nurse was asking if I was still on treatment and how it was going after I had the scan. It makes me wonder if they see the scan and they know roughly from glancing at it if it looks good or not. It got me worrying that maybe she saw something. I couldn’t read her to tell if it was good news or not. She asked if I would get the results in clinic. I kept thinking why is she asking me this… is it bad news?!

But it’s done now. Nothing more I can do and I have to wait until next Tuesday for the results. Urgh.. A whole week.

I’m having an evening on my own as Pete is out to work at an event and I have got myself as much fresh food as possible. I can’t wait to tuck into it and maybe I will have an Epsom salt bath and neti pot to really spruce myself up and get me all relaxed for a night in front of the box. Ahhh I’m already relaxed…

 

Research Alerts;

I received this info on how researchers have identified a gene that, when repressed in tumour cells, puts a halt to cell growth and a range of processes needed for tumours to enlarge and spread to distant sites. It seemsreally exciting for us TNBC and other breast canSer survivors.

Click the link for more info; http://www.genengnews.com/gen-news-highlights/turning-off-cancer-s-master-regulator/81248318/

 

More news; I’ve been asked if I want to be featured in Women’s Own magazine as they are doing a piece on cancer survivors who have done/are/ doing remarkable/brave things. EEK! Plus Pete and I were featured in The Cancer Vaccine Institutes newsletter featuring my bracelets too. Little moments of stardom and recognition…. Happy.