Evening all,
Such a lot has happened since I last wrote to you all.
Uni has been keeping me busy, assignments to get in and lectures and seminars to attend. Unfortunately so has the Bastard.
Symptoms have worsened, the incontinence and pain particularly, so much so I ended up in A & E twice, most recently needing several doses of morphine along with Entonox before the pain was finally under control. I was transferred to a ward where I unfortunately had my worst encounter to date with the overstretched and underfunded NHS. I am glad to note that it is my first bad encounter however but was enough that I felt no other option than to self discharge. I was receiving less pain relief on the ward than I could have accessed by myself at home. So home I went. Plus there is no medicine like your own home and family around you.
I also saw Dr Oncologist during these two episodes about treatment options. Thankfully there are options. I am very lucky that despite having a recurrence of the cancer I am apart from the pain and incontinence not unwell (touch wood). This makes me a good candidate to explore medical trials, I have been reading some very interesting stories about immunotherapy so I was pleased to hear this. Dr Oncologist duly referred me to a very good qualified oncologist in Liverpool. We shall call him Dr Oncologist Two.
In the meantime we also had to tell the children that the cancer was back and that ultimately it will win. As you can imagine this did not go very well. Our eldest in particular took this very hard. I think they believed I had been cured despite us telling them regularly this could not be the case. Unfortunately my grandfather has also been newly diagnosed with Lung Cancer so we are now both fighting the Bastard but things look a little bleaker in his case which angers me enormously.
Yesterday my dad and I travelled across to Liverpool to meet with Dr Oncologist Two. He had initially got two trials open that looked interesting, one was a Phase 1 trial of two immunotherapy drugs and the other a Phase 2 trial of standard therapy of chemotherapy plus a drug that inhibits the cancers ability to tap into a blood supply, vital for growth. The issue with this trial is that it is randomised so 50% of patients get the standard treatment plus the drug and 50% get the standard treatment plus a placebo. So in essence I could be travelling all the way to Liverpool for treatment that I could be receiving here in Newcastle. Unfortunately the phase 1 trial had closed its books to new patients two days before our appointment so he could no longer offer me this one. He was very candid with us, basically gave me the survival rates for different options and what would be expected. 6 months if no treatment, 6-9 months with chemo and if I could access immunotherapy perhaps a year. I think this shocked my dad. To date I believe he has been under the illusion that I could be cured. He said it did him good to hear it from the horses mouth.
Dr Oncologist Two was very fair and honest with us, he took the time to explain everything and answer all my questions along with his very lovely trial nurse. He suggested that there is a trial for immuntherapy in St Barts in London that I would be suitable for. If I took the phase 2 trial in Liverpool it is not likely any immunotherapy trial would accept me as they are running for second line therapies only not third line. So, if I started the phase two trial in Liverpool that would be my second line of treatment and any therapy after that would be third line and the immunotherapy trials are not available as third line therapy currently.
I think therefore that we have to try to get Dr Oncologist to refer us to London to see what they can offer.
My lovely dad has agreed to be my travel buddy so I have someone with me if I am accepted on any trial. I am worried about travelling on my own in case of being taken ill due to experimental nature of these drugs.
Team Verrico are once more backing us up, I cannot thank them enough for their ongoing support.
Lots to focus the mind. Not the least of which is the stark reality that 2017 will probably be my last statiscally...but who cares about statistics eh?
I will keep you updated on our journey.
Take care xxx
