Whilst surgery went as well as it could have, I recovered well and I am extremely lucky to come out of it with no major impairments which is what we were concerned about.
I have however lost peripheral vision in my left eye which was hard to get used to and work through in the early weeks but I have adjusted and don’t notice it as much.
We received the pathology results and unfortunately it has changed for the worst and we are now dealing with a grade 4 Glioblastoma.
The average survival time is 12-18 months - only 25% of glioblastoma patients survive more than one year, and only 5% of patients survive more than five years.
As you could imagine its been an emotional and tough few months and while statistics are against me, it hasn’t changed my determination to find a way to be the exception.
Throughout this journey so much help has been offered and has been the only way we have been able to get through these past 3.5 years and we are so incredibly grateful. Knowing I am here asking for help is hard but the truth is we can’t do this alone and need your help again.
I want to get rid of "Terrence" the Tumour for good so we can get on with life, perhaps start a family of our own and make plans for the future for us as a couple but for hopefully our children too.
My surgeon wants me to start chemo & radiation right away and then get into local trials.
With brain cancer chemo and radiation isn’t a permanent solution it’s a short term solution.
What I am after is a long term treatment, something that is going to give me more than the year I am promised, something that is going to give me hope and quality of life, not something that is just buying a bit of time but resulting in the tumour growing back anyway.
We have been looking into treatments in Mexico and Germany offering immunotherapy that is having incredible results, which boost your own immune system to fight the cancer itself, hopefully buy me more time and one day this tumour will be stable and my body show no evidence of active cancer so we can move on with life as well as possible.
The downside to this is the huge cost that it involves and this is just a rough estimate without travel costs or currency conversions that will most likely exceed predictions, as even after the initial intense regime to get the tumour stable, patients generally continue to go back for years to come.
German doctors have told me they have patients with brain cancer and my specific tumour still living 8 years after this treatment, this is so promising and I am so excited by this possibility.
We are in direct contact with people with brain cancer who are now stable after this type of treatment and doing incredibly well with multiple stable scans.
The main treatment being the Dendrictic cell vaccine, where they take some of my blood and culture a vaccine specific to me which boosts my own Immune system to eliminate/stabilise the remaining tumour.
This vaccine is administered 4 times initially spread out 4-6 weeks apart, so the travel to and from the clinic, the loss of complete income, the bills we have to still pay at home whilst doing this is what we are up against and unfortunately we can’t do it on our own.
I will continue to be completely transparent and share everything I implement along the way, as well as with such a grim prognosis which I am not settling for we will be doing all we can to tick things of our bucket list and continue to live our life to the fullest while I can.
Seeing and experiencing new things as we can afford to do so, as I visualise myself living a long and healed life but I can’t ignore the statistics of this beast and need to act now so we can fulfil our life dreams and grow old together.
Thankyou from the bottom of our hearts for all your love and support as my journey continues 3.5 years on and I still believe I can and will beat this!
As always, I got this
Love Sammy & AJ xx
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