2015 Bring it on!

Todays’ New Year’s Eve.and thoughts go to.. Will I be here next year?

Will you?

Does that sound negative?  Depends on your frame of mind.
I have just spent the day on holiday in Antigua with my man and strangers. I laughed, contemplated, was just pain lazy, and looked dreamily at my bear hoping for many ,ore days, years like this.

I don’t feel sad. I feel over overwhelmed. I’m not scared of dying. I’m not sad if I died and had no more. But I be sad not spending every waking hour with the love of my life and the opportunity of what could be. Wouldn’t you?
We chatted over our extensive Caribbean lunch about what I am afraid of. I’m afraid of pain and not having quality of life. Pete pointed out that as long as I felt the most love and that as long as I wasn’t really struggling for breathe for example that every single living moment was worth it even if I was bloated on steroids and riddled with tumours.
It doesn’t matter any way. I keep having dreams or even lucid dreams of someone with powers looking at me and seeing inside me and seeing the cells of cancer like those sea particles that light up like luminous fireflies. They can see them leaving my body.

I have to be honest, as usual. I haven’t felt well. I’ve experienced sickness and giddiness every day. I’ve been sick most days and I’ve been off my food. It’s boring really. It’s upsetting not knowing why. But today has been good. I haven’t been sick. I have felt giddy but not too bad. I have been good not drinking alcohol and eating healthily, as I can.

So today is the final day of 2014. I’m not the sort to dwell or to plan huge for the future. I always have to lot to reflect on and be grateful for and I love planning for the future.

I’m sat here on our balcony, welling up with tears again. Goodness knows I’ve been doing it for days.. Tears of happiness actually. I have had a few secret cries through despair but I didn’t want to stress Pete anymore than I have . He already worries and loses sleep every time my head hurts and sickness occurs. We try to turn a positive spin on it but fear creeps in and the impending doom lingers over our heads. But todayI feel better again. I have stopped the supplements again. I can’t stomach them. I feel rank. Full stop.

Right now the sun has set and I’m hoping the little Mosquitos bugger off long enough to enjoy my time listening to Joni Mitchell and dancing with my Bear in his arms.

We’ve had a great afternoon shaking our booties to some dodgy tunes, swimming in the sea, bouncing on a sea trampoline and eating in the best restaurant on the island. The kindness, happiest people are here. I’m filled with love and in fact we spent the afternoon on Jacqui O’s Love Beach. Couldn’t have been named better.
So what does tonight bring? Australia are in 2015 and the UK are not far off it.
We are hours away and as usual I could easily go to bed.. Sleep and me are still best friends.

We will spend it on our own. No need for anyone else. No frills, spills or gimmicks. I only ever want to be near my favourite people. My favourite Bear. The rock, my love and my one who will continue to carry me through the tough times ahead. We still believe I will be NED.  We still think our own baby is possible and we will carry on living like there is no tomorrow.

Let’s face it do you know what you would do with you last day on this earth?
Today could be it. I’m not sorry. I never will be. I cry a lot.

I cry because I can’t believe I’m so lucky. I cry because I will miss it all. I cry because I have so much to give. I cry because no one knows how good life is if they haven’t lived in my shoes.
So what’s next?

The usual. Continue doing what I’m doing. I may have been off the radar a lot but I don’t feel like journaling when I’m ill. I don’t like to draw attention to illness. I don’t want you to have to feel sorry for me. I’m not asking for attention. And I know it can be boring and depressing dragging on about my minor ailments.
My biggest hope for 2015 is to feel happy, healthy and full of beans! I turn 40 in 2015… Not older but much wiser!
We have lots of things we want to do and I’ll reveal them once we have mapped them out over our bottle of champers later tonight.

But right now, I want to say 2014 has been immense. Better than expected. Despite the brain tumours, the surgery, the numerous vaccinations, the disappointments and let downs,  the highs, the lows. What stands out? My support.
My wonderful friends, my supporters from all over the world that give me strength to keep going, my family who are in pain too and my ultimate, 100% Rock of a husband, Peter, Bear….. Life doesn’t get better than this.
I’m never alone. And I can’t thank you enough for that.

Life doesn’t get any better than this. But if it can please God please make 2015 our year! Triple negative gals need a bloody life line.  And if 2015 isn’t the year this happens just know that I’m not going anywhere without a fight!

2015- bring it on!!!!!

Just being happy….

The weekend was as expected; fun filled and full of laughter and maybe too much fun! Is that possible? It always is leading up to Christmas. So many people to see and try to spend time with before the big day.

As usual I pushed it to the limit and felt absolutely ‘cream crackered’ Saturday but Sunday we had a big lie in and did lots of things around the house; cooking a tasty Jamie Oliver meal and doing chores and watching all the reality TV shows… It’s mindless rubbish to some but I love watching how much it means to the participants. It seems that everyone’s emotions are so full to the brim and close to the surface. I thought it was only me that wanted to cry at everything! Apparently not!

Despite having a restful day yesterday with Pete neither him or I could sleep last night. I think I kept Pete awake to be honest, although I think he has so much on his mind. As much as we think things are going well for me the looming results of the scans are coming.

We think things must be pretty good for me at the moment as I am barely on any steroids and I do not have headaches, migraines or neck aches. Plus there is no cough, touching everything wood.

Our trip to Germany is also imminent. I am not being ungrateful and we will have fun in between having treatments but I really would rather stay at home. I know once I get there though the call of the Christmas markets will keep me entertained.

Pete tries so hard at making everything a lovely memorable occasion.

So back to last night and lying there awake. I wasn’t even thinking about the scan results, but actually dictating a blog/journal.

As mentioned many times before I am finding it hard with the nutritional side of things recently. There are so many do’s and don’ts. What is best to eat and drink and to avoid and so on. But as we know canSer is different for everyone. What if for me, right now, I just need to be happy. And to be happy I need to accept myself for whom I am. Throughout my life I have always battled with what is best and having to exercise every day and having to meditate daily makes me a better person. But what if right now I just need to listen to my heart? What if right now being me and eating whatever comforts me and nourishes me enriches every cell in my body and doesn’t actually feed canSer?
We know the importance of happiness and less stress on our bodies. We know that the mind cannot distinguish between reality and imagination. I am certain that stress and anxiety is a major factor of canSer in my life. I have noticed even the other day having the contrast injected into my arm for the scan how shaky I became. I am so sensitive now to stress and anxiety and I truly believe that is what fuels the canSer inside me. If that is the case then I need to ensure I do things that make me feel calm and happy.

If eating certain foods and drinking juices make me feel nauseas then I shouldn’t do it. I am not suggesting I am going to sit and eat a plate full of biscuits but hey, if that’s what I choose to do then that’s what I will do and not beat myself up about it. As it stands my body’s cries out for what it really wants and so I cooked a kale and spinach soup today. It’s hugely alkalising and tastes really good!

So this got me thinking last night that I have to continue just ‘being’. I have to accept this moment and to just ‘be’. Once one accepts this, life is so much more fun.

The only thing I do continue doing despite not really liking it, is taking the handful of medication and supplements every day. I still battle with swallowing them down and keeping them down, but I do have a way of disguising this challenge by eating with them, which I never did before. It will be interesting to see if my change of diet and decision to be happy really has had an effect on this disease that plaques me.

I am still hopeful that one day I will be in remission. I still have a dream of having a baby despite our ages.  With all the  news coming in presently about big developments with immunotherapy and PDL1 I truly believe that within 5 years treatment for triple negative will be more targeted more than for positive breast cancers. I just need to keep going. And it is a constant battle. I want to do this so much for Pete too. I really want him to have a good life and to know that all the effort, work, money and commitment to me that he has succeeded. He deserves success.

For now I am going to enjoy all the Christmassy things occurring around me and look forward to a bright future being canSer free. There is so much to live for; maybe I have more to live for than most… I’m a lucky girl. Til tomorrow when hopefully good news comes in.

For now I want to thank all my lovely clients that have supported me this year…Here’s looking forward to 2015!

X

8

This is Bear…..

Hi this is Bear,

I started writing this as an email to Tom, whose loved one is a survivor, but as Claire is feeling a bit under the weather I thought I would step in and make it a blog for all the Bears. Husbands, lovers, brothers, sisters, children and friends who are helping a brave lady through this terrible time in their lives.

And there it is. The first thing to point out,  we always say “terrible time”, but the most important thing is to make it the greatest time, none of us know how long we may be given on the earth and we are all, after all “terminal”. So Claire and I have tried in everything, to make the demands of canSer fun and exciting but I feel that the best advice I could give, is to look at life within simple elements.

The most important thing is to have a plan. We created the ten point plan on day 3 of diagnosis and so far although the components have changed the plan is still the same (https://www.triplenegative.co.uk/tenpointplan.aspx ). Having a plan gives you strength and helps to adjust as better treatments evolve.

Then you have to LIVE. It can be easy for canSer to consume. For every thought and action to be related to the disease. Whilst you are fighting, you have life and the opportunity to do what you can to make sure that you drain every drop from that life. Leave no regrets and live with canSer as a perceived issue don’t live a life of canSer.

Live in gratitude for all things. I know that platitudes are painful, but we both truly believe that life is not measured by the breaths you take but the moments that take your breath away. We have been so blessed, in love and friendship, in the opportunities we have had and the life we have been able to live. Things that for many who live until 90 will never be achievable. Every breath of wind on a sunny day, the kindness we see around us, all of these things help us to face every day with love and light.

And finally – don’t compare. Never look at statistics they mean nothing. If 1 person out of 100 survives then that is 100% survival for that person. Be that person. canSer is the disease, which we try and classify, but we should be looking at every patient and as far as I know everyone is different -so never compare.

I hope that in some small way this helps. I wish you all love and never forget that we are million strong and that the medical world is changing quickly. In as little as two years we could have a cure – let’s all make sure we are here to see that day.

Bear

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

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

Results!!!

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

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

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

The news was fast and simple really.

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

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

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

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

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

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

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

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

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

The Venetian Masquerade Ball was a huuuge success!

I’ve been a bit lazy these last few days. I’ve been meaning to write and give an update but the weekend was manic to a degree and as usual I needed to catch up on things.
The big highlight of the weekend and well I guess for the end of this year was the Venetian Masquerade Charity Ball that my friends suggested to raise money for our favourite charities; Breakthrough Breast Cancer and The Cancer Vaccine Institute.

Pete and I had quite a lot of input and helped out quite a bit by obtaining auction prizes and selling tickets and so on, so we felt quite nervous and hoped it would raise lots of money. Of course as a typical women, the other big thing was what to wear… Argh! For me I hoped that I would have hair but of course that wasn’t to be so my thoughts were, do I go bald or wear a wig or…?

The ball was being held at Caswell House, and the food and drinks and everything supplied from lighting, to the fun photo booth, to the dj, band, photographer and table centre pieces and everything were donated or provided at cost! My friends even paid for an additional photographer for me as a surprise! (Thank you ladies!)
As yet I haven’t seen any official photos but there are lots of snaps from friends…

1 2 3

We arrived to a wonderful champagne reception with everyone fully glammed up and wearing masks.. I arrived in a red dress, red shoes, red and gold feathery mask and… A red sparkly bob wig! It was funny because some people didn’t recognise me! For me it was a big thing.. I didn’t want to look silly but thought it was a great opportunity to really be a bit extreme…

I have to say everyone excelled themselves. Every single man and woman looked awesome, so dapper and beautiful.

I simply cannot believe how quickly the night went. We arrived at 7.30pm and left at 1am! I wasn’t ready to leave! The food was simply divine, the auctioneer/MC was so funny and handled the night brilliantly.

A highlight of the night was how much the auction prizes went for! I cannot believe the generosity of everyone and it was so exciting!

The stand out moment was Pete’s speech..Everyone was left teary eyed and it really focused our minds as to why we were there. I couldn’t look at him for fear of really blubbing and ruining my make up! I think his message got home though. His main point was how much love there was in the room… The circle of love. I really believe that everyone felt it.

On the night I was being updated as to how much we were making.. I couldn’t believe that £2000 was made on raffle tickets alone! My numbers were called out.. I won a lovely Christmas wreath.. It’s on my front door now.

4

Yesterday I got an email from Kate at Caswell House to say after all costs that the total raised was £20,560.00! Oh my goodness!!!!!! This is an outstanding amount to have raised..

I want to thank everyone who came, who donated, who supplied and contributed in every way. I know the money doesn’t directly help me but I hope that it helps so many ladies and their families and I hope that they will never be in my shoes… Bring on a cure.. Please.

The following morning we headed over to Witney to see our friends and my mum for breakfast then I think we all started to feel very jaded. Pete and I and our lovely friends Alex and Lee spent the afternoon watching rugby and eating! We chilled and laughed and generally felt very grateful. Sunday was very much the same for us when our friends went home. It may seem like we spend a lot of time doing very little but that’s exactly what we need sometimes… It’s so nice to wind down and be wrapped up in a soft blanket and have my feet rubbed by my Bear… I love him so much.

This week has been going well. I have nothing much booked in so it’s brilliant. I have been getting admin done, doing my daily rituals and really trying to get on a roll.
I’ve been exercising, doing yoga and eating very well. I still look very pale and have very puffy eyes. Nothing a bit of make up won’t cure or a holiday….. He he… Which we have booked!

In true Pete fashion, he said that we have to keep living like we normally do. So despite having to travel abroad and go to hospital we should still book our trips away like we always do. We didn’t want to hang around over the new year holiday period so have booked to go to warmer climes and get some vitamin d and bliss out. I was a bit
nervous booking a holiday but now I have done it I’m really excited! Whoop!

I have had confirmation from St Barts that they finally received my tumour sample and they have sent it to be tested. Hopefully this Friday or next Monday I should know if I’m eligible for the trial… Watch this space.
I have also had confirmation from the Churchill hospital in Oxford that I have an MRI and CT scan booked for next week, so the results should be with Prof Harris the following week when I see him. So that’s good, I will at least know in detail what is going on and if the radiotherapy has worked. I have everything crossed. I have to say I feel better in myself. Still no cough, no headaches and now no shaking. That’s got to be good news?!

I am definitely getting in the Christmas spirit. I have been doing all my shopping online…Sorry Mr Postman! This weekend I am going to drag Pete to buy a Christmas tree and then we can have our ritual of singing Christmas carols around the advent candle…. Bring on the mulled wine and sparkly lights! I have started writing our Christmas cards and I have drawn some Christmassy pictures… He he… All in all this is a lovely week.

Bear and I are getting lots of sleep, eating really well and generally looking forward and loving to the max! We are spreading the love and feeling the love from all our friends and supporters… #circleoflove

Tomorrow I am being picked up by my sister, then spending a few days with my mum! We are going to finish the Christmas shopping and I get to be spoiled down in lovely Dorset by my mum….
Fun packed, love filled and generally looking forward to what’s coming next…

A massive light and love… XX

I would like to officially thank the following for their contributions and donations to making the charity ball a massive success;

My good friend Samantha, one of the Kitty’s Climbers, who thought this idea up and grafted over the last 6 months,
To Kate and Steph at Caswell House for all your hard work and making it happen so smoothly.
To Amanda and Richard for letting us host the ball at your stunning venue.. Caswell House is gorgeous and I can’t wait to be there again sometime!
To Jason and Nick from the Es Vive Hotel and Chic Villas in Ibiza for your generous auction prizes.
To Ivan and Harvey Nichols London for donating a wonderful cocktail masterclass
To the anonymous person who donated a signed arsenal shirt
To Nilam Patel for donating a spa day at her Dermaspa
To Marianna and Francesca at Soru Jewellery for donating the stunning rose quartz necklace
To Sarah Pooler and Ocean Beach Club Ibiza for donating a day/bed with cocktails

To all those who donated prizes they are featured on the ball programme attached…

Thank you to you all! You’re all amazing!

X

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

Radiotherapy done and dusted and trial in progress…..

Treatment number four went fine although I had over an hour delay. We didn’t get home until 7pm… oh well that’s it goes…Still no headaches and only a slight tingling sensation.. Is this normal? How can I be getting away with no headaches?

Yesterday I got up at stupid o clock and got on a very early train London bound to visit St Barts hospital again.
This time it was to sign a consent form for a trial. I was a bit anxious because I had to be back in the afternoon for my very last radiotherapy session. The thing with public transport is that you never know what may happen. I read online the day before that my friend took  five hours to get to London!!

That was why I was being extra cautious and getting to London ultra early before my ten o clock appointment. Everything went swimmingly. There were plenty of seats, the underground wasn’t heaving and I found my way by foot just fine. I had plenty of time so hopped into a lovely cafe and had sausage and egg with a green tea for brekkie. All the while I was texting and emailing the consultant who had arranged the appointment to say I could be seen earlier. Well if you don’t ask…

I didn’t get a reply so I went to the clinic reception half hour earlier and low and behold they had no record of me. Why was I not surprised? All the women on the desk looked at me all confused so I got up the emails on my phone. I then proceeded to email frantically and did get a response. In a short while one of the trial organisers came and introduced herself and said it wouldn’t be long. What a relief.

I then met Dr Peter Schmid who is heading up this trial. We discussed the fact that I wanted Peter there and that my brain is a bit mush like so I may not be on top form. Dr Schmid said it was fine but essentially he got my medical background off me. I really must write out my timeline! It would save so much time and recollection. The trial requires testing my tumour sample that was removed way back when to determine if it expresses the protein relevant, therefore making me eligible or not. Apparently only 1 in 3 are eligible. Bugger. Sometimes even if the tumour results come back negative they take them on anyway because there is evidence that the trial, PDL1, stimulates the immune system and can therefore still have an effect on the cancer. I am  not sure what they will decide with me.  So that’s what I went all the way there at a cost of over £70 for. Worth it I guess. (Travelling peak time is a nightmare!)

I signed a document giving consent for them to contact the Churchill hospital and obtain a sample of my old tumour so that then they can send it to the US and have it tested. The reason for the urgency is that these things can take a few weeks. It clearly will… Then if that comes back positive and we are all systems go, Dr Schmid would like me to start the trial before the end of the year. I like this. I like moving forward and getting on with things. To be honest I really must.

I mentioned to Dr Schmid about having TACE and he said that it wouldn’t work for the lungs. Really? He expressed the positivity for TACE for the liver but not lungs. Oh well we will see wont we?

I mentioned the symptoms that I had been having and that my headaches are not really there only a tiny bit of tingling. He said that ideally I would need to have stable tumours and no headaches to proceed with the trial. Well let’s hope by then my brain is all sorted. I should be having an MRI by then and will know if the radiotherapy has worked.

Also I should be off the steroids by then completely. I contacted Dr Oliveros and she advised that as of now I can reduce the steroids down from 8mg to 4mg per morning for five days then 4mg to 2mg for the next five days then down to 1mg by breaking the tablet up until I see Prof Harris on the 9th December. Brilliant. I am quite excited about this. I can’t decide if the ups and downs, the high energy moments followed by the sketchy shakiness is the tablets or just me? Is it a side effect or is it me ever since the brain tumours?

Anyway back to Dr Schmid. He seemed really nice and very caring. He is concerned for me and said that he feels I should get on either carboplatin and gemcetibine or eribulin as asap if I am not going to eligible for his PDL1 trial. Of course that is my next option. After TACE.

Whilst I was there I got a few messages from two ladies. One lady is currently on the trial and gave me their details. It was lovely to chat with her and I sent her regards to the doctors. Then I also got a message from another wonderful lady who had got her friend with TNBC onto the trial and should have started last month. She sadly passed away before she could start the trial. She said how  lovely Peter Schmid and Louise Lim, the consultant were. I passed on her regards to them both. They seemed touched.

I signed the document and skipped out, back to London Paddington. I was back home by 1.30pm. By now I was absolutely pooped and almost fell asleep on the train. I mooched for a few hours then my lovely sister in law drove over an hour to collect me to take me to the Churchill hospital as Pete had some very important jobs on and couldn’t take me.

We left ultra early and spent a good hour chatting in the cafe at the hospital. I went into radiotherapy early and was seen early! Yay! My last treatment went quickly, although I am sure the radio beam was longer than before. There is such a weird smell and the metal taste from my fillings is weird. But other than that harmless.. well you know what I mean!

We left and drove straight into the rush hour traffic and also the road works around Oxford. This meant my sister in law and I chewed the fat for over an hour! Honestly we must have steamed up the car! Haha! It didn’t feel like and hour and we certainly didn’t get stressed. I was so grateful for her taking me.

I bought the mask that they used on me home. I kind of thought that if I needed more radiotherapy that it would be helpful to keep it, but they said they would make a whole new one in case my face had changed from weight etc… Oh ok.

So that’s the end of that chapter. I am geared up for four days in Germany next week for some hyperthermia and infusions and to see Prof Vogl of course.

I was absolutely wrecked last night and slept like a log after having such an awesome dinner made by my Master chef Bear; seabass, celeriac mash and green vegetables. We are trying to take on board the ketogenic diet but during the day was a bit hard as I had some carbs like bread. I am trying. Honest!

In fact I am trying so hard that I made some flaxseed crackers and flax and coconut bread from the recipe book by Patricia Daly. The crackers are ok. They are not thin and crispy. I must try them again. But the flax and coconut bread is moist. It’s bit thin and not very flavourful but with a topping or dip will be brilliant. Pete gave it the thumbs up! This is great news. This means we can have bread of sorts in the house! And it’s not carbohydrate at all!
Today I feel good again. I feel bright as a button when I wake up and I get on with so much. I have a few bits to do around the house today but I feel like a Duracell bunny. By the afternoon I tend to flag a bit. I definitely feel more alert and can manage and organise things to be done. Then it goes a bit awry.

I realised when I got up the other day that the flights I had booked needed to be checked for going to Germany. Bugger! I had booked them all wrong.. I got on the phone to BA and they were amazing. In fact they saved me money…Phew what a relief. But it just goes to show that my Bear needs to keep a check on me in this brain addled state.

Now I am just intrigued to know what will happen next with my head. I am being careful with washing and creams. I feel a bit itchy I think and I am wondering if my skin and scalp have been affected. I also wonder if in a few weeks if my hair will fall out. (just in time for the ball! Haha)

I no longer have a cough or cold! Yay! I mentioned this to Dr Schmid whilst I was there and he said it is likely the coughing has stopped because of the steroids reducing the swelling. Hmmmmm. I am not convinced. I was told by Prof Vogl that it would take two weeks from the TACE and the cough would stop. I am going with that theory. Let’s hope so. But what I do know it is a relief not to be hawking up all the time. I still have an incredibly sore rib but as I am not coughing so much anymore I can handle it..

All in all things are going in the right direction I believe….

For more information on the trial look up clinical trials : http://clinicaltrials.gov/show/NCT01375842

Light and Love.

Mention cold and cough