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