Days fly by and before I know it five days have passed since my last journal. I do mean to put pen to paper more often but I get so caught up with life and when away from my desk it’s almost impossible to keep up to date.
There’s quite a lot to tell.
Firstly the fun stuff. Friday I had a lovely evening with my fella in a classy restaurant in London and a night in a funky hotel. We decided having little treats like that kept us interested in our favourite city. We ate at Berners Tavern, I would highly recommend it. It is a beautiful restaurant.
Saturday brunch (yes darling, brunch!) was a real treat too. We met a lovely couple whom we have been in contact with these past few months. Having met by telephone originally we decided it was time to meet in the flesh. It was so lovely to catch up and make new friends.
I may have accidentally fallen into some show shops whilst in London so we made a hasty retreat back home and spent the afternoon in the garden. The weather has been gorgeous.
Bank holiday Monday was a lazy day for many but for Pete and I we got up before sunrise and made our way to Heathrow. We had a quick trip to Duderstadt to visit Doc Nesselhut to have blood tests and blood collection for my next dc therapy there.
It was eventful as usual and it is like the United Nations these days! In the waiting room we met fellow warriors and discussed treatments and options. It’s eye opening and also comforting to know we are on the right tracks… we hope.
I had the opportunity to discuss a treatment plan with Thomas Nesselhut. Pete was being ultra organised and got his MD head on and we made a flow chart, naturally, of the forthcoming months and even years we hope.
We asked Dr Nesselhut about ‘antisense’ which we had been told about by Dr Hembry in February. He looked through my file and noticed that I had shown positive for the Epstein Barr Virus, which Prof Dalgliesh says everyone carries, but Doc said it was active in my cells not just present in my serum. This he said we should treat as it is a very inflammatory disease and causes the liver much stress. Right, ok then. Off we went for more blood taking to be sent to Greece for them to create antisense to treat that. Sometimes everything is a bit of a whirlwind but at least you feel like you are doing something. He also decided it would be good to get a full reading of my bloods and see how the t regs and everything are getting on. So off my blood went to Berlin.
Doc Nesselhut told us that the last vaccine I had was Anti PDL1 and P2X7. I don’t know much about it other than it isn’t something you can have regularly. He has said though that I will be having it again once more… I will be researching first!
We told him that that I am hoping for ablation and he thought it was a great idea. We did discuss sending him samples of my tumour that is currently stored but he said it would be best to get samples of the tumours in my lungs if possible. OK, on my list of things to ask Prof.
We anticipate that we should go back for dc therapy in July a few weeks after ablation to mop up the cells that could be floating around after ablation. Of course we would have to travel by car as I have been informed i cannot fly after ablation due to the air pressure damaging my lungs.
If for some reason the immunotherapy doesn’t work after ablation we have decided the next step would be TACE with Prof Vogl, then if that fails I go down the chemo route of using the most effective ones found in the RGCC test. If by any chance the lymph nodes clear up then I can opt for laser surgery with Prof Rolle in Germany also.
All along side this I am currently using GcMAF and I think I will be adventurous and try to make the bravo probiotics (well Pete can!)
I may also ask Dr Hembry her thoughts on complimentary infusions. And not forgetting supplements and diet, exercise and so on.
In between appointments, I had a call from the UK. It was Dr Gonsalves from St Georges who will be performing the ablation on me. He said that unfortunately the 12th June was not possible and that now I am booked for the 19th June. OK well at least it is booked but oh my, I am waiting longer all the time. This makes me so anxious and I am so aware of how things can get out of control. I just hope I am beating it off (with a stick!)
In a small way it is quite good it isn’t the 12th June because my birthday is the following weekend. So at least I get to celebrate before having ablation, the last of my thirties!
We have agreed that I should visit him in clinic before the end of this month to get all the details (and costs!) He seems such a nice man. I feel very comfortable with him so far. He just reiterated I must not book any flights for two months after the procedure.
So that’s the plan… Do I feel better? NO! Am I ever happy? Well, yes, but fear is an amazing thing and the way it manifests itself. I am of course happy to know things are going in the right direction but I am so nervous of what is happening inside of me right now. Gut feeling everything is ok….
After our brief visit to Duderstadt we headed off to a place that Pete hasn’t been to since he was small child with his parents. It was lovely and idyllic and we ate fish for tea…
Home now and running around like a loon trying to get everything done. I don’t know what I would do without Pete. He is amazing and really sorts everything out… Bless him.