What a month it has been…

As I sit here I am all confused as to what has happened in the last month!

Life is always busy in the summer months for Bear and I. My birthday, his birthday, friends and family birthdays, our anniversary, along with trips for treatment, work is buzzing for Pete and so much more.

This is a not a moan!

Since I last wrote we have been back to see Dr Nesselhut in Duderstadt, Germany. There I had my usual treatments of bloods taken for next treatment, oncothermia, an infusion of nivolumab and a DMSO shot (which I found out not only acts as an anti-inflammatory but also collects metals that may be floating around the body.. It hurts for a day after!), a shot of ipilimumab and then the vaccine using my dendritic cells.

It went swimmingly and as usual seeing Dr Nesselhut senior was a real treat. The discussion naturally went to Brexit and how we are all shocked by it. We also discussed Dr Weber and the photo dynamic therapy using infrared laser treatment that he offers, recommended by Dr Nesselhut himself, to work alongside his treatments.

I explained to the Doc that Dr Weber hadn’t replied to any calls or emails since my first one. It turns out that Dr Weber has been attending many conferences and is currently in Dubai trying to get his qualifications there so he can treat there. Well what about the about the patients in Europe who desperately want his help? Or is down to money? The fact that he could make so much more money over in the United Arab Emirates must be a draw for him. Now it all becomes clear…. Dr Nesselhut said that he will buy the photodynamic machine and he will offer the treatment instead of relying on Dr Weber. Well that would be great and it would be very useful for us not having to travel anywhere for it. It turns out that Dr Weber actually manufactures the machines used for this therapy as well! PDT (photodynamic therapy) has been prevalent in the news recently with new drugs to use with it. It seems really exciting and positive. We will be pursuing that treatment further. I have been told to wait for a call from Dr Nesselhut once he has purchased it… I couldn’t wait so I have emailed! Haha….. Dog with a bone…. Or as I prefer, kitty with a ball of string! Not the same eh? Haha..

We returned from Germany only to return to the airport a day later, but this time for fun! This year marked my Bears 50th Birthday! We wanted to do it surrounded by friends and in one of the most beautiful locations in the world, the Riviera on the South of France. Bliss.

We stayed all together in a villa with a stunning view of the sea and Roman Abramovichs’ yacht. (It is enormous.) We laughed, lazed, snorkelled, had an evening in Cannes, a day in Monaco and the best day celebrating Pete’s birthday, on top of the Fairmont Hotel in Monaco overlooking the hair pin turn of the Monte Carlo Grand Prix course. Its stuff only dreams are made of! Whoop!

It was emotional (Pete did one of his speeches again- got us all crying as per usual), enlightening and also life enhancing. I felt so happy and enjoyed every minute of it. We want to thank everyone that made it an awesome time. It couldn’t have gone better.

13690760_1032942853450883_4739217383128860310_n

 

Whilst we were there our good friend, Martin decided to #bravetheshave. He wanted to raise money for our chosen charities in honour of me, and shave off his hair. Now, it may look like he didn’t have much to lose (Sorry Martin!) but it was still such an honourable thing to do and by golly, he has been supported by so many people already! He has raised, so far, over £1000! We almost to the grand total of £45000 in total that we have raised in the last four years. This is sensational and I cannot thank you all enough for being involved in the fund raising over the years. Just as a reminder the money doesn’t go to me but to Breast Cancer Now and The Cancer Vaccine Institute. If you would like to donate here is the link to my page;
http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserPage.action?userUrl=makingtriplenegativeapositive&pageUrl=2

13731473_10153752780237061_4645744689847679619_n

 

 

I don’t feel sad to come home as I was broken from not sleeping very well plus the partying took its toll. Haha. I am getting old! There was only awful moment and that was the Nice disaster. It sent chills down our spines as we had only passed through there earlier and we had been watching the fireworks on the coast from our villa that night. The next morning we messaged our loved ones to put their minds at ease and let them know we were all fine. Our wonderful friend Patricia Messenger did a live broadcast to her radio station in Cork, Ireland on the Friday morning. There was deathly silence around the pool as we listened to her account of what had occurred. So very sad.

We left on Saturday and all said our sad goodbyes. Then we met Jon Snow, the news reporter, who looked tired and bewildered. He discussed the events in Nice and said they couldn’t show any images as they were so terrible. He was on his way to the US to meet with Donald Trump. Two disasters so close together, poor man. Haha! Funnily enough, I ended up sitting next to him and what a lovely man he is. Then as I glanced behind me the celebrity chef Rick Stein was sitting there. Then when we collected our luggage and hopped into an elevator Rosie Huntingdon-Whitely (Jason Stathames fiance I believe?) was stood there. Err what a random day. It was so funny and made coming home so much easier.

Being back we have been up to our eyeballs multitasking. The days fly by which is why I do not write as often. I hate to say it but I simply do not have the time! I am back trying to exercise and attended my yoga class for the first time in a few weeks yesterday. It’s all a bit sore today, a good feeling, to know I am doing something.

Yesterday was our wedding anniversary. 8 years! It has flown by like a blink of an eye and feels like it was only yesterday. We didn’t do anything special for it. There was no need. We just told each other how much we loved one another and held each other close. The best snuggles in the world. Life doesn’t get better than that.

Sadly this Friday we are attending a funeral of a very close friend to Peter. Peter had cared for this elderly gentlemen for almost 30 years and we both spent many hours a day doing everything we could for him. As time went on he lived in a care home and eventually passed away peacefully at the ripe old age of 93. There is a lot to be done when someone dies, so this is now also something we are dealing with. It’s totally new to us and we are working our way through forms and government requirements which is time consuming…. Not enough time in the day sometimes. But we will get there because that is what we do. Never stop, life never stops and neither do we.

We leave for Frankfurt on Monday for more TACE treatment with Prof Vogl. I am still feeling well and the lungs are feeling good apart from feeling tired and sometimes out of breath. But there is no wheeze, no clunking inside the lung and I still do not have a cough. This feels good.

 

I saw Professor Harris yesterday and asked why I had only received an appointment for a CT scan next week and not an MRI scan for my brain as usual? He said as I am not having treatment on the brain and there are no symptoms he doesn’t feel that we need to have them so closely together. He was reluctant to tell me and said that he would ensure I could have one the next month.

I really like the Prof, he is honest with me. I asked him if he would prescribe me the capecitabine chemo tablets that Prof Vogl recommends I have in between his appointments. I would rather get them free on the NHS if I can, rather than pay privately abroad.  He said, again reluctantly, that he couldn’t prescribe without a letter from a professional, therefore I need to ask Prof Vogl to write me a letter. Done. It’s been sent already.

Prof Harris also said he was amazed at how I am responding to the same treatment I was given by Prof Vogl last year as he said that I had had progression recently. He said someone like me who has a few tumours, and not twenty scattered in the lungs, for example, is known as oligometastatic.

That’s a mouthful I thought! He explained that people who are oligometastatic generally can treat their tumours individually and have specific treatments for said tumours and survive longer. On reading more about it last night Pete discovered that there is some research to prove that someone who is oligometastatic might possibly be able to be cured! What????? I cried! Now this is great news and gives me even more hope to kicking this bad boy in the butt.

Phew, that’s a lot that has been going on and the next few months do not get any quieter. Just the way I like it.

Over and out! X

13680901_10153755655727061_8128738929194585334_n

 

Leave a Reply

Your email address will not be published. Required fields are marked *