I've been busy, I'll tell you all about it whilst I scoff yet more Christmas food.....
Since we last spoke Christmas has landed and I have been to big old London Town.
I believe I have told you how much I love Christmas in the past, this year has been better than last year. Apart from anything I haven't had radiotherapy and therefore the horrendous burns to cope with. Plus this time last year we were between two houses.
So. The first Christmas in our new house and deciding where to put the tree, table and other decorations. A quiet one with just mum in law, the children, Andy and I. But it is one where I felt more able to participate. It is also one that feels stolen, I wasn't supposed to be here, others that I knew aren't, but that is the same for us all. Not all of us make it through the year. The obvious elephant in the room is the thought that this Christmas is my last. But again, that is true of everyone. The only difference is I know my likely nemesis.
I do not have a monopoly on lasts. I guess I just have a closer brush with them and so thoughts that many are lucky not to experience daily?
Well since Liverpool and Dr Oncologist Two I contacted Dr Oncologist (the original) about a referral to the eminent Top Professor in St. Barts in London. I've also had some more pain killers added into the mix to help with the episodes when my pain relief doesn't work. Touch wood...I'm so superstitious...I've managed to avoid hospital so far. Mr H is back in counselling and the children have some more arranged for the new year.
My symptoms are continuing to worsen, pain is worse, blood in urine is constant, incontinence constant and digestion shot to pieces. I won't go into that any further here, you might be eating your Christmas nibbles after all.
I did a Margot Leadbetter and ordered Christmas on a van, it makes life so easy for those of us unable to join the mad Christmas rush around the shops. Not sure how people managed before the digital age who were ill! I for one am grateful the internet exists.
I got my appointment at St Barts so yesterday my mother in law and I travelled down to London. I was very nervous, I have a lot riding on this appointment. We travelled via the train, it is the best option for me as travelling in a car is incredibly hard work now and I need to stop frequently, not always possible on the motorway. We arrived at King's Cross and grabbed a taxi to the King George V building where all cancer treatment is carried out.
What an efficient place! Not that my local hospital isn't but this is on another scale. I found it very smart and clean and it instilled confidence in me immediately. A nurse weighed and measured me as she did all patients and we duly waited. Clinic was running an hour late but I didn't moan, each patient was getting the time they needed to discuss their needs with their doctor. The only worry was catching the train but to be honest, I'd have missed my train and dealt with the consequences. I wanted to see that man. The man with the life extending drugs I desperately need.
We duly met with the man in question, a small unassuming man but very nice and I think I will get along with him well. We shall call him Top Prof. because he is, one of the best in the country I believe? And to be honest if he can keep me alive for longer he may prove to be my own personal messiah. A bit much? I don't think so, it's what it means to me.
He explained briefly his immunotherapy trial, most of which I was aware of as I had researched it prior to my appointment. The drug essentially will take the invisibility cloak off the cancer, my immune cells should then recognise it as bad and begin to attack it, in very basic terms. There is the chance to add another drug into the mix if my cancer has a particular genetic marker. They have found that there are two particular genetic markers that they can target even more precisely helping the immunotherapy be even more effective.
I read through the trial information, signed my agreement and that was it we can begin the screening. They took blood which they will use to screen for the genetic marker and they will also access my original tissue biopsy which will need to go to America for screening. Ultimately the final decision on my ability to access the trial rests with the trial company.
The screening process will take around a month and Top Prof. envisages all being well we will start treatment in a months time. I will need to travel to London for treatment but this will be possible due to the fantastic support from Team Verrico for which we are all very thankful.
My life is in their hands but I feel positive. A promising start for a new year.
I'll leave it there, I have some Christmas cake to scoff....
Happy and Healthy New Year to you all
xxx
