Wear it Pink Day- Pink boobies, Paul Hollywood and Mary Berry!

Friday was Wear it Pink Day for Breast Cancer Awareness month and I couldn’t wait to be part of it.
I got up early (for me) and headed to Peters office. Everyone there was dressed in pink- All different levels of pink… standard splash of pink right up to full on Mr Blobby!
We all had our faces painted- again different degrees of face painting from the tasteful to the downright ‘in yer face!’ look. Haha…
There was the Great VTUK Bake Off and the judging was hilarious to watch whilst Pete and his colleague Adam pretended to be Paul Hollywood and Mary Berry. The competition was steep and the flare of the bakers was brilliant! The cakes ranged from boob cupcakes with nipple piercings, a smartie pouring cake, macaroons, cheesecake, minions cake and something we are not sure we can describe on here. But it was all very funny and soo tasty.. I cheekily had a taster.
Best of all… we all had a complete laugh and raised money for the charity Breast Cancer Now. Between us we have raised £450! Wow… well done guys and gals! Awesome. And it really made me happy. I haven’t laughed so much in ages.
I was so excited with my face painting seen below that I kept it on all day and that included my visit to the supermarket. I hoped it may spark some smiles and cheer some people up but all I got was eyes averting and looking down to the ground. I wondered if it was because I was in pink or if it was the bald head and ‘kitty’ face. I continued on my shop round Tesco when a little Tesco worker walked past me and miaowed. Cheered me up a treat! Ha-ha!12019992_917341238363924_8631057113408566454_n12019992_917341238363924_8631057113408566454_n
I want to thank everyone at VTUK who always commit fully to our fund raising efforts for the charities we have chosen to support. They raised £450! Well done guys!
Not only do we feel good mainly from laughing after these events I am left feeling with so much gratitude to each everyone who takes their time, money and effort to be involved. It is never taken lightly and I am so humbled by the team who year on year make such an effort and a difference, not only to the charity but to me and Pete.
Here are some images from the day;

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I just sneezed….a really good sneeze…

Yay it’s Friday! I know I shouldn’t really mind what day it is because I don’t currently work therefore making me a lady of leisure however Friday means that tomorrow is Saturday… and that means my Bear isn’t working. That then means a little snuggly lie in and lots of snuffles on the sofa! Yay again…

It’s true, life troubles can make or break couples and for me and my man it has just made us stronger. Every single day is different. I mean life’s a battle anyway. I never know how I am going to feel, and that can be hormonal or just because things don’t go as planned, and motivation isn’t bursting out of me. For Pete, his business proves challenging every day, I would imagine. But having canSer or any other long term illness, every day can be a struggle. I spend so much time thinking about how I am feeling and what I am going to do that day such as preparing food, meals etc. I think I am too self involved. It’s ingrained into me now. I need to be very aware of how I am feeling just in case I am missing something. But what I hadn’t noticed is how I feel when I start feel better.

There is no wonder Pete can get down by my constant observations of every little niggle, feeling of nausea, pain in my head or ribs, you name it I’ve had it! He loses sleep and it has a snowball effect.

But yesterday I realised I had sneezed. A really good sneeze. And I hadn’t doubled up in pain, almost passed out and collapsed on the floor. (Ask my friends and family. I am not exaggerating!)

Yes, I had sneezed and felt very little discomfort! What?! In the months that I have struggled turning over in bed (I sound like a little dog being trodden on- haha!), I haven’t been able to do abdominal exercises (this has pained me as I love having great abs!) and felt complete agony doing the hike in Yosemite as I thought my lungs were going to burst as I couldn’t take deep breathes in as my ribs were aching so much.

This is something to celebrate. But it got me thinking. What other things hadn’t I noticed?

Well let’s start at the top eh?
My hair is growing nicely. It looks odd being patchy and dark in colour. My last pelt grew in the summer months so came through sun bleached but hey ho it keeps things exciting and new. Every time it grows back it is different, all except the cow’s lick that continues to show itself off proudly.

I haven’t had any tingling sensations, numbness, headaches, flashing lights or anything remotely head related, therefore making me believe that the little brain tumour gremlins have gone.

My cough has abated completely. I now cough as any normal individual does such as when something gets caught in there or if I inhale my food too fast!

My skin is really good. I have no sign of the dermatitis that I experienced earlier this year.

I can now deep breath without any being hindered by pain. This makes yoga and exercise so much easier. I am loving my little yoga practise every morning but really feel I have to learn more. I need a really good teacher locally. It’s on my to-do list.

I’m feeling more able to exercise since the nausea and feelings of being faint due to low blood levels have subsided. It’s made me feel more motivated to want to do more.
Pete and I went for a three mile walk/hike on Sunday and finished it by climbing Wittenham Clumps, a local landmark. Yes, it was hard but it so worth it. My little head and ears got cold but the views and the feelings of happiness so outweigh those little negative feelings. And the roast dinner to follow was such a lovely homecoming reward. Nom nom nom.

I recently have had damp issues in my house, my treatment room in particular. As I have been off work it has been a perfect time to get it sorted so the room has been turned upside down as we have waited months to let it dry out and finally the room has been completed. New floor, walls, and I have rearranged the furniture so that it feels fresh and inviting. And you know what? I think I am going to return to work part time. It’s such a beautiful space and I feel good when I am in there with the calming music playing, candles burning, twinkle lights twinkling and aromatherapy smells soothing the soul.

 

You can see where I am going with all this. Things aren’t always that bad. Yes I have canSer. Yes I feel terrible that my hubby, friends and family have to deal with the worry, the fear, and the turmoil every month such as I do. But right now, how do you feel?

 

There has to be a silver lining to everything. Actually even when I’m throwing my guts up and worrying Pete to bits, the upside is, the reason for the nausea is because I am having treatment which may not be clearing my body of canSer but is only maintaining it at a level where I have few symptoms and can live a normalish life (takes a deep breath…what’s normal anyway?) Well that’s something to celebrate too! I was told I have incurable life limiting canSer. But if we live in the present and be grateful for all the good things that come and go and let the negative things wash over us and try to see that every day of the week has something to feel good about then life isn’t ‘alf bad is it? (I’m speaking in my cockney accent now! Apples and pears an’ all that!)

I’m off to paint my nails pink in my new treatment room. ‘Pinking’ myself up even more, supporting Breast Cancer Awareness Month.

So today is a good day. It’s Friday. I feel like running along high fiving everyone!

Have a great Friday, great weekend and great life.

Love and Light, you lovely lot.

XX

 

October- Breast Cancer Awareness Month

October is Breast Cancer Awareness Month- as you all probably know. This is the month we all don pink and try to raise more funds for breast cancer charities. To remind everyone that it is the month when you wear pink; proud and loud, Pete and I decided to change our ‘drive dragons’ from being their sultry bronze to a very bright pink! Haha! We want to make sure that everyone gets involved and hopefully brings a smile to people’s faces.

IMG_3152-1

IMG_3153On Friday 23rd October it s wear it pink day. Check out www.wearitpink.org and get involved and have lots of fun raising funds for breast canSer charities.

As per usual my husband my hubby and his team are chomping on the bit to get involved and will be all wearing pink, having face painting and the Great VTUK Bake Off! Move over Mary Berry; make room for the brave contestants at VTUK property solutions. I simply can’t wait to see what they come up with. The rules stipulate it has to be a cake (um, ok) it has to be pink, and it has to feature a ‘boob’! hahaha…. Go guys.

Share with us your fund raising efforts and any pictures of you guys getting involved throughout this month by posting on my facebook page; www.facebook.com/TripleNegativeBreastCancer

X

 

 

TACE number 8….

Last Friday night was a night of glitz and glamour and time to spend with my husband’s colleagues. We attended a black tie event in London in aid of the Agents Giving Charity. Agents Giving is associated with members of the property industry from estate agents to suppliers. All people who dedicate their time and raise money for charities. It was really good fun and out of the blue VTUK, Peter’s business was mentioned, me included, for our charitable efforts. It was as expected slightly embarrassing but for once I didn’t recoil at the thought of having to go up on stage and accept an award. Of course I had Pete by my side who made me feel safe. It was actually fun! I did stand out a bit though with my bald head and an evening gown but I got many compliments.

The weekend was relaxing all except the England rugby team losing an important match on Saturday… Boo….I started to get a cold and cough and this really wasn’t great timing as we were heading off to Frankfurt on Monday for TACE.

The cold bought the pain in my ribs back hugely and I dragged myself out of bed Monday morning to open an email headed ‘Sad News’.
Gulp, that’s never a good start but I couldn’t believe my eyes. The email was from the husband of my friend, Lindsay, whom I met through another friend and we spent some time together in Switzerland when we were receiving GcMAF treatment last year. Another triple negative breast cancer warrior, she seemed bright, positive and loved her life and family. She emailed recently expressing the fact she had just been told she now had brain tumours. No problem I thought, she’s got this in the bag, just like I did last year. She started having treatment and was planning on going to Germany and so on….. But she never made it there. She had messaged to say she was really feeling quite unwell, and the next mail I received was Monday morning.

Shocked, saddened, beaten, gutted, are all words that just pop up when I think about it. It touches a nerve as I couldn’t help her more and she was just like me. I’m still here, despite everything, I’m still here. It doesn’t make sense and I am once again shocked as to how quickly one deteriorates. In just three weeks her health declined and she passed away. Oh my goodness. Of course Pete and I both shed a tear and passed on our condolences but what else can we do?

Well it gives me drive to make sure we get there. My drive for living a healthy and symptom free life carries on. Is that selfish? I so want to be canSer free. But shouldn’t I just be happy that I am currently well, no new tumours, no growth currently and without symptoms.

We hopped to Frankfurt to see Professor Vogl Monday and I was treated with my 8th TACE on Tuesday. Prof Vogl does make me chuckle. I had some weird things happen such as the numbing drugs kind of happened all at once, and I felt really woosy whilst the Prof was asking me questions, then felt completely drug free from that moment. It was a little tender this time but I was in and out of there by the afternoon. I spent a long time waiting to see Prof Vogl after the surgery and as usual he had all of about five seconds for me! Despite me stopping him and asking him more questions he just kept saying ‘Ok we see you next time!’ Now in the past this would wind me up, but I actually just find it funny now. It just makes me email him all the more and as he calls me his ‘number one emailer’ it makes me smile every time I press SEND. I did want to know whether I had any more miraculous events happen in the month since I had seen him. He said the tumours have got a little smaller but he seems more bothered that the ‘active zone’ seems really reactive. He thinks one or two more sessions of TACE then he wants to use LITT on my largest tumour in my right lung. LITT is basically laser ablation, I believe, done in one day as an outpatient. Gulp. I don’t like the sound of it but I am game. I asked about the tumour in my lymph node, the one that makes me cough when it is bad. He said it is still there but smaller. In fact he said, ‘You’re lungs are looking really clear. You should be running like a rabbit!’ Then out of the surgery room he walked. When I saw him later, he was wearing his apron that he wears when in surgery to protect him from the CT scan. I really smiled when I saw it had his name written on the front of it….Hahahaha! He found this funny also; well there was not much else he could do whilst I was pointing at him giggling.

OK I may not get all my answers out of him but I do feel like I am having decent treatment. I want to know if my lungs are looking clear, why do my ribs cause me so much pain? This I will find out in my next scans provided by my hospital locally. I have requested for them and await my dates.

Just like Dr Nesselhut, Professor Vogl seems uninterested if the tumours are shrinking. They seem more pleased there are no new ones and that I am living healthily and happily right now. And that’s when it comes back to the present yet again. I just think something has to give. How long can I continue to have these treatments without them having some dramatic effect and the canSer running for the hills? What am I missing? What else can I do? I guess I must be doing a lot right to still be here when there are those around me who aren’t.

I thank my blessings every day. My cold is abating, my ribs continue to hurt but it’s bearable, and bizarrely enough I don’t really feel too bad after having the chemo that I had Tuesday via TACE. So all is good quite frankly…..

I don’t know what else to say… I ramble on about my life and how I feel but to be honest all I am thinking about is the ones who didn’t make it. The pain their families and friends are going through and how living day to day is really all any of us can do. Life doesn’t get any easier unless you put love first and focus on this moment right now as your number one priority.

Light and Love magnified 100 fold……

XXXX

Bear Blog… Giving thanks and gratefulness

When we first had the news of Claire’s terminal diagnosis, we made a conscious decision that we would not seek to raise charitable donations to fund Claire’s treatment. We knew it would be very expensive but we felt it right that we should firstly use every resource that we had to pay for this ourselves, so the big fire sale began. At the same time it became obvious that research needs to be funded and that there were many who were simply constrained to the standard path of health care by finances and not will to live.

So we started to devote all of efforts to raising money for others. We are very lucky to have a circle of friends and family who feel likewise and are full of love and the passion to help others and the fund raising has been to say the least frenetic.

Perhaps the biggest surprise is the happiness, love and sense of achievement that this has bought to all of us. Put frankly I could not recommend involvement in charity for a cause that means the world to you, with all your loved ones, colleagues and neighbourhood, more highly.

Last night we attended a Ball to celebrate the contribution to charity of the whole Property Agency business in the UK. We were astounded at the feats of funds raising. Swimming the channel and then immediately swimming back again, 300 mile kayaking trips, cycling the length of Britain carrying golf clubs and playing a round of golf every day. The list was breath taking. Image then our surprise when during these proceedings we were singled out for a special mention and were bought on stage to receive the Award as Fund Raising Champions of 2015.

This was of course highly embarrassing but all I could think of were the in words that the Chairman bestowed on Claire, in front of that audience of generous, giving and simply very decent people. He spoke of how she copes with the disease, of the inspiration of her blog and of course the lengths she and all our friends go to, to raise funds for charity.

No one strives for charity for awards, but I will be forever grateful that this was given in recognition of this achievement and especially for the lift that it gave Claire. She deserves it, she needs it and she will be stronger for it.

So perhaps if you know someone, who is brave, who fights for others and who never seeks thanks – do something today. Recognise and appreciate them. Whatever they say, tonight when they go to bed they will be smiling and they will be stronger forever because of what you do.

Light and Love

Bear

I hope that we can help, even just a little….

It’s been a busy few days…Bear and I had another first. We watched the All Blacks play rugby against Argentina in the Rugby World Cup at Wembley Stadium. Wow! Anyone that knows us knows how important rugby is in our life. To Pete it’s everything. To me, it’s the legs and bums! Ha ha! It was so much fun and they didn’t disappoint. Feeling tired doesn’t matter when you compile the mixture of work and play that we have in our life. And that’s key to living life to full.

Right now, I’m sitting here feeling a little jaded. We returned back from Germany last night at about midnight. Sleep was heavy but mainly due to feeling over tired and also from the effects of having treatment at Dr Nesselhuts. I had the same treatment as I had at the end of July; an infusion of nivolumab, hyperthermia, infusion of B17, a shot of DMSO (which bloody kills my thigh!) Newcastle disease virus, then onto my vaccination using dendritic cells primed with Newcastle disease virus and a shot of ipilimumab. Sounds a lot, probably is and is obviously why I feel a bit hot, have a swollen arm (a great response again according to Thomas) and a dead leg. My ribs are still hurting from the apparent fluid that is contained in that area as Vogl told me but it isn’t helping much when I sneeze or cough! It also hinders my sleeping ability. I’m sure Pete is a bit tired of hearing, ‘Ow’ every time I turn over in bed.

I felt all warm and fuzzy speaking with Thomas Nesselhut yesterday. He is such a great doctor and has really had to fight his way over the years to those who don’t believe and who are trying to stop his practice from succeeding and helping the likes of me. It is so great to hear how he has helped many people and that nivolumab is really giving great results. However there are a few stories of very severe side effects, such as kidney failure and paralysis. La la la la! I didn’t hear that bit.

It’s still remains the fact though, and listen loudly everyone. Immunotherapy, such as what I am receiving; i.e. dendritic cells and nivolumab etc, shows amazing results for those who start having it early doors. So if you have been diagnosed with stage one or two canSer then do as my friend does and visit Nesselhut and ensure your future is bright and healthy. He can almost ensure there will be no reoccurrence. Unfortunately most cases he receives are like me; stage four; where it has metastasised to other organs and remains incurable with limited life expectancy. This makes it a real challenge and sadly he also has cases whereby he literally is saving them from immediate death.

Now money can be an issue; but this year I have seen so much compassion from the general public helping complete strangers out by donating to their cause. It infuriates me that we are in this position that I and we cannot get this treatment here in the UK. All is not lost though.

I may not be able to give you direction on having dendritic cells here in the UK for triple negative breast cancer right now but I can point you in the direction of clinical trials for nivolumab and ipilimumab.

http://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-nivolumab-ipilimumab-people-with-solid-tumours-that-have-spread#undefined

Make sure you read the information under ‘Who can enter’. Then approach your doctor and ask them to refer you. I am cheeky as you know and also tried contacting them myself but as I had immunotherapy already they will not accept me. You must be forceful and if you haven’t heard anything for a while once the referral has been sent, then do chase it up. Be a dog with a bone! Ha ha….

I hope that helps a little and please do let me know if you are successful or would like to share any other trials that may be useful for triple negative girls.

I will be returning to Nesselhut in about 6 weeks to continue treatment. Next though is Frankfurt next week for TACE. It’s not my favourite treatment but if Professor Vogl tells me good news again then I more than happy to go through the pain.

Going back to the subject of money, it disgusts me that there are people like Martin Shkreli, the CEO of Turing Pharmaceuticals, are raising the price of a drug from $13.50 to $750! This is outrageous and there should be laws against it. This is why people are dying all over the world. It’s all about the money…… What a horrible world we live in.

I long for the day that we can have all treatments in the UK and it’s not classed as illegal or experimental. Let’s face it, all treatments are experimental as none of them are 100% guaranteed to work. They all have side effects and everyone is different. If only Dr Nesselhut could set up over here. But as long as he can’t then I will help anyone that wants to see him for treatments. Please email me or message me on my Face book page; www.facebook.com/TripleNegativeBreastCancer

I hope to God that Dr Nesselhuts clinic remains open. I get shivers down my spine when I think of what would be if the clinic closed. He has to fight to do such good work and research and help people like me. Despite doing everything ‘by the book’ and above the law there are still ‘people’ who are trying to find ways to stop the good work.

For now we soldier on and hope the results continue to improve and if this disease, especially triple negative breast cancer can be cured, if not cured, then classed as a ‘chronic disease’ that can be staved off with treatments or drugs such as diabetes.

Bear and I feel so passionate about this, more now than ever. We hope we can help as many of you as possible.

Light and Love. X

 

 

 

 

 

Why do we wait? Life is for living….

It feels like forever… I have been away for just over two weeks. The longest I have been away with my Bear. We decided that we would have a once in a lifetime time trip. You tend to start making those decisions when you are living life on the edge. But why do we wait?
We have had a wonderful time travelling around California and Nevada seeing sights I never anticipated seeing; good and bad, and taking in the most breathtaking views and wildlife. It really was a trip of a lifetime. Now we are home and trying to get back to a normal routine. Jet lag hasn’t hit us too hard yet but I do feel a little sketchy.
We got plenty of warmth and sunshine as they were having unseasonably hot weather. My bald head is suitably brown. Along the way we met people who had canSer or had recovered from it. So many people didn’t know how to deal with a bald headed girl. Many, I think, thought it was out of choice. Pete overheard two teenagers passing me whilst walking on a trail to a waterfall. (I say walking but it was more like climbing and puffing and panting my way up a ‘strenuous and steep trail’ not an easy one as the tourist info guide had told us! Still, it was a challenge and I completed it!) The kids said, ‘Wow did you see that ladies bald head?’ The other said, ‘Yeah man, it looked way cool’ Ha ha.
My mind is buzzing and I need to look back at photographs to remember everything we did. It is such a blur! Pete drove in some scary conditions sometimes in mental traffic and other times on cliff edges and with sheer drops. We saw what felt like the top of the world and miles of desert and mountains in Death Valley, Sequoia trees in Yosemite, elephant seals and whales close up on the Pacific Coastal Highway and met Matt Baker filming The Big Blue Live (Oh and plague chipmunks!.. Long story) We stayed in the hotel that the movie Pretty Woman was filmed and was given a bottle of champagne by a stewardess on our flight home for being such a lovely couple….It really was the best trip ever.
But now I am sitting here and having done the washing, mowed the lawn and had our first night back in our own bed feel more grateful than ever. Pete returned to work as soon as we got back and didn’t stop whilst we were away.
How do I feel? I had some ups and downs whilst away but nothing that hindered the trip. I am eating heartily now and couldn’t believe how much rubbish there was to eat in the US let alone the quantity they serve. We dreamed of salads and vegetables and thankfully managed to get some eventually. One store we went in was wall to wall processed rubbish food. We craved fresh wholesome food. And they wonder why there is an obesity and heart disease epidemic over there. When I trained with the Integrative Institute of Nutrition last year to become a health coach I didn’t realise how bad it has become there. It’s scary….
The best part of the trip was alone time with my man! But as you know already, I love being home even though it needs cleaning, dusting and so much ironing needs to be done! With all of its imperfections and jobs that need to be done to stop the damp in one room, decorating in others, I love it here. It’s good to get back to routine and being away gives one time to feel like you are starting a fresh.
I have more trips coming up for treatment. I have Dr Nesselhut and Professor Vogl booked this month again. The pain in my ribs is still there but has moved. Some days are good and some are bad. Trying to walk the steep trail in Yosemite was really hard on my lungs because of the pain in my ribs but it has improved. I can sneeze without wanting to die now! Ha ha… My appetite is pretty good and I have put on weight, much to Pete’s relief. The day we were leaving I was being sick at the airport due to the TACE. I don’t know why it affects me when other chemos didn’t, especially as it’s such a low dose. I don’t know what my bloods are like at the moment but I haven’t felt any light headedness for a while and feel quite strong in myself. I also have no sensations in my head and haven’t had any migraines for some time.
On the whole things seem pretty good. I have a busy calendar coming up so things to work for and look forward to. It makes life exciting.
I say, don’t wait to have that holiday of a lifetime or put off doing that thing you have always wanted to… Do it now; it gives drive and fulfilment and hope. It’s hard to believe that it has been five years since my first ever diagnosis with triple negative breast cancer. I still have cancer but I am well. One thing has changed though since then. I have a much better life now than I did back then. There is so much love surrounding me. Life has not been bad to me but it just keeps getting better.
It’s good to be back…..11953253_10153104364882061_2717827519881860373_n 10997991_10153106526952061_3574953599015447253_n 11986367_10153106526622061_192145067533916112_n

I’m a miracle apparently…..

It’s a rainy day here in the UK today. I actually really like it. It’s refreshing and feels like starting a new and there is so much to be thankful for.

We returned from Frankfurt on Friday night after being offered an earlier flight by BA. Thank you! It was nice to get back just a tiny bit earlier.

We arrived in Frankfurt Thursday night to loud booming music in the streets surrounding our hotel. We asked the reception staff what was going on, who told us it was their street party for that particular area of the city. So off we went investigating and eating the odd bratwurst along the way. It was great fun and certainly made the evening fly by. I was pooped and was looking forward to good a sleep before TACE the next day.

In the recent weeks my ribs on the right side have progressively got worse. It feels like it did about a year and half ago when I had excruciating pain only to be told there was nothing there. I know I have an old fracture but this pain is moving and is causing me real trouble when I move. Sadly exercise has to be put off; even doing yoga is a problem… Boo. I am feeling flabby and unhealthy but at least weight is going on and staying on.

We didn’t hire a car this time so started our day with a twenty minute walk to the hospital. It was particularly busy in Prof Vogls’ waiting room but I didn’t have to wait that long.

I was taken through and had the same scenario as always; MRI then into the procedure room where I was prepped and left to wait for Vogl to arrive. Boy, that man is everywhere and doing everything. I sent him an email the evening before and he replied at 3am! That guy is committed or crazy. I like him. I understand now why his emails are so short and sweet. He always asks how I am and what I’ve been up to as he wanders in getting himself prepped to do the TACE procedure. I wince every time he injects me then makes the incision before inserting the tube that will transport the chemo drugs straight into my lungs. To be honest putting the line in my arm was more painful this time mainly due to students practising on me!

Anyway he asked me again what I had been doing and I said not much….But what he was actually asking is what treatment had I had done since I saw him four weeks ago? I said not a lot just the usual stuff at home and a visit to Dr Nesselhut for vaccine and nivolumab and a small dose of ipilimumab plus infusion of DMSO and amygdalin and Oncothermia…. you know the usual!

He asked if I had surgery on my lung. No… He said, ‘You are a miracle- because the tumour has reduced by about 70% since the last time I saw you.’ He said that he had never seen this before not that quick. Wow! I loved receiving this news! I explained to him that my cough had gone so that would mean the tumour in the hilar node has also responded. He said yes it has gone.

I don’t remember anything much after that because I all I really wanted to do was tell Pete. The three hours recovery dragged somewhat especially as I needed the toilet! Honestly using a bed pan was a nightmare for me. I was willing myself to go. I was desperate for relief but my body wouldn’t allow me to pee!

11896098_10153073986392061_6203737434762283089_n               (The image shows before a month ago and after with the tumour circled in red.)

Whilst lying there I used my mobile and text Pete to tell him the news. Well you can imagine his reply. He was so happy he cried. I love him.

I also asked Prof, ‘Why did my ribs hurt me so much?’ He suggested that there wasn’t anything there relating to canSer but it was in fact fluid accumulating due to how quickly the tumours were reducing therefore causing some collateral damage. He suggested I let it heal on its own. I wish it would hurry up! I would love to do some cartwheels in celebration. It didn’t stop me from doing a little celebration dance in my usual style though- pain or not!

So we came home with our minds reeling… I am thrilled to know the combination of treatments are actually working and I always knew combining treatments was the way to go. I reckon Nesselhuts treatments are really working alongside the TACE and let’s not forget all the stuff I do at home. Looks like there may be a way to keep metastatic triple negative breast cancer at bay.

Whilst waiting to see Vogl before I left, my friend Peter Trayhurn arrived for his 31st session of TACE! His blog is well known and he has been battling on, proving doctors wrong for five years now; an Australian trying to succeed away from his family. Well as usual he had lots to say but before I left I told him that Prof Vogl thought I was a miracle. On reading his blog this morning it seems Vogl was having a great day as he also told Peter that he too was a miracle as he had no tumours present in his lungs…. so the happiness continues. I feel chuffed for him.

Now we don’t stop. We don’t become complacent and we know something we are doing is right… The fight is just getting started and I reckon we might just beat it and not just keep it bay.

Light and Love. X

 

 

A post by Bear….

Hello, its Bear, just a picture of me too so that you know its me. Peter

I wanted to talk to all the friends and family. Living with canSer takes a lot of adjustment and understanding and from all of the brave ladies that I talk too, something becomes very clear. Firstly they are all the loveliest, loyal  people I have ever met, but also that when faced with death they hold on tightly. 

 

They hold onto family, to friends , to favourite foods, to places and in the case of Claire to her beloved “bawsquit” (that’s a bed by the way) and teddy bears. I have see this time and again and its just like gripping onto sand, the harder you squeeze the more seems to run out. Husbands, boyfriends and above all friends. 

Obviously we are all going to die, but that’s not front and centre in peoples thinking and I even understand, that it my be to much to have that image before you, when all you want to think about is life. Then add onto that the change in character, especially with brain mets. Passionate to the extreme, easily hurt, as disloyalty is expected and actively sought. A lot of people can’t cope with this kind of intensity and love. 

But you should know this, one day that will be you. Hopefully old and in your own bed. You will need love and you will be heartbroken if you are disrespected, deceived or worse lied to. So if you cant cope then please just leave kindly and don’t hurt someone when they are so vulnerable, because when you do you become part of death not life. 

To everyone out there who is feeling alone and for whom fear and darkness are becoming to much, know that we are here, that we love you and that a simple message can bring you love, truth and the understanding you need to know that life just “is” and you have made it a beautiful part of your journey.

Supplements.. It’s a minefield

There are many supplements that I have taken over the last three years since I was diagnosed with incurable canSer. It is a minefield but as you can see from my website I have listed the ones that I feel are beneficial and have added their benefits.

The thing is I wrote that three years ago and have added to it over the years but I now need to update it it yet again.

I would suggest going with your gut when choosing what is best for you.

I still personally have issues trying to know which is best to take. I don’t want to take hundreds of pills daily as it is physically hard to keep them down, it’s hard to know if they are doing anything for me and also the cost involved. Buying supplements are not cheap. I also believe that changing things is good for the body. It keeps it guessing and the body doesn’t become complacent.

Therefore I am always open to what others recommend, especially when they have experienced success.

Below is a list of what I currently take;

Calcium with vitamin D: This was prescribed for me because I inject myself with denosumab, to help my bones stay canSer free. Denosumab can draw the calcium out of my bones which is why I take a supplement.

Immune impulse- a liquid supplement for improving my immunity in my gut.

Bromelain & Curcumin: Both anti inflammatory

Essential parent oils- Contains omega 3,6 and 9

Quercetin- found in onions and garlic. Based on my RGCC blodd test this is meant to be very helpful for meas is artemesinin, lycopene and liposomal vitamin C.

Rose hip extract
AHCC- Boost immunity
Green Tea Extract
Super R Lipoic
Selenium

I also take a range of mushroom products such as reishi oil, cordyceps and coriolus. They are all known to help with working alongside chemotherapy to keep bloods supported.
As well as the supplements I also take some drugs that are known for their uses for other illnesses but research has shown that they are cheap and can benefit and assist canSer patients.

Aspirin- low dose to keep blood thinner.
Cimetidin- a drug used like an antacid.
Metformin- Used for diabetics- for me to keep blood sugars low
Atorvastatin- Controls fats by lowering chloresterol.
Mebendazole- Used for worms but is apparently clever and targets canSer cells.
All of the above drugs except aspirin were recommended to me by the Care Oncology Clinic in Harley Street, London. I initially bought them but since have asked my GP who is happy to prescribe them for me.

Click the links and it gives details on how these drugs should work;
http://careoncologyclinic.com/cancer-treatment-options/

http://careoncologyclinic.com/wp-content/uploads/2015/08/CANCER-BIOLOGY.pdf

 

I have also been recommended the following by my friend who has had huge success with his canSer and is currently free of incurable lung canSer;
B15
B17
Pancreatic enzymes
Zinc

The first three he suggested I buy from a company in Mexico. He has done a lot of research into the best possible supplements. I take his word for it! I haven’t yet started these but will soon.

My friend Raquel, the patient advocate I spoke about last week suggests the following supplements as recommended by a doctor working with the clinic in Germany suggesting that taking them prior to having any immunotherapy would be a good grounding and make the recipicient much stronger and have more success:

Selenium
Zinc
Carnitine
Vitamin D
Omega 3
Vitamin A palmitate
Boswellia
DCA
Psorinum
Multi impulse
I am not familiar with all the supplements mentioned and will research into whether I should add them to my already extensive list.
Looking at my RGCC report it suggests I have one of each column and change it up every month;
i;                                                              ii;                                             iii;
Artecin                                                 Virxcan                                  Genistein
Ascorbic Acid                                                                                      Indol 3 carbinol
Bio d Mulsion                                                                                     Quercetin
numedica miscellised D3
C Statin                                                                                                 Salvestrol
DCA
Lycopene
Salicinium
Super artemesinin

There’s a lot there to take in and I never really know if they are having an effect so I have to go with how I feel and what my body tells me.

Right now I know that since I started taking multi impulse and liposomal vitamin c on top of everything I currently take I have felt stronger, less nauseous and hopefully after having my bloods taken today my results will show a stronger me reflected in my blood.

This weekend was great again spending my time with my Bear. Sadly my hair has been falling out since having TACE and as much as I was hoping some would last it was driving me mad finding hair everywhere and poor Pete was inhaling it at night. I could hear him blowing it away! Haha.
Bald again. Initially I was bothered. But it is only hair, as I keep telling myself. On the up side, my cough has started going which must mean the treatment is working! Yay…

The ups and downs of being a triple negative canSer patient….