I'm moving all updates to
https://humourovertumour.wixsite.com/nasopharyngealcancer/questions-tools/my-experience **At the moment, I'm trying to make light of it all on Instagram via @humour_over_tumour
link:
https://www.instagram.com/humour_over_tumour/ (
https://www.instagram.com/humour_over_tumour/ ) (
https://www.instagram.com/humour_over_tumour/ (
https://www.instagram.com/humour_over_tumour/ ))help me laugh my way through this!
PAIGE stands for... Personal Artificial Intelligence (currently still laying ground work but one day, hopefully powered) General Executive assistant. Paige is also a given name for males and females. It is of Latin origin (Byzantine "Págius" young boy helper/mate of young nobles, from "padius" young boy, derived from Greek "Paidion" child) and its meaning is "young helper" or "young child".
The Bad News:
On September 25th 2017 my wife Sheena (32) and I learnt she had Stage-3 Nasopharynx Cancer (or nasopharyngeal carcinoma to be precise), which is both rare and challenging to treat by traditional means.
As the diagnosis followed a prolonged series of complaints and escalations with our local GP, not only was the diagnosis a bombshell, we are also now on a very fast path to undertaking and evaluating immediate treatment options.
The Good News:
Having spoken to the Consultant and Oncologist handling Sheena's care there is positive news that this is a curable cancer!
But…
Due to the location of this particular cancer (inside the head) surgery is simply not an option.
The treatment (a combination of Chemotherapy & IMRT Radiotherapy) comes with a very high risk of long-term issues due to considerable acute toxicities through high doses being delivered to adjacent non-cancerous tissues.
The side effects for traditional IMRT are described by our Oncologist as "long-term complications such as xerostomia, deafness, hypothyroidism, osteo necrosis, cataract, ocular risks, numbness and weakness the hands, blurred vision and second malignancy".
Rightly or wrongly the philosophy here in the UK for this type of cancer (as I can't talk about others) is that a 'good' outcome is curing the cancer, but with the very high probability Sheena will live with these long-term complications.
For Sheena, who is 32 years old, curing the cancer is clearly a priority but her long-term quality of life is also a massive concern, especially as a mother of two young girls ( 4 yrs + 2 yrs).
There is an option to preserve long-term quality of life for all of us – Proton Beam therapy, which is an alternative form of radiotherapy. All early studies for Proton Beam therapy point to patients gaining a higher quality of life during and more importantly after treatment, and for the few patients we have spoken to this certainly rings true. If you would like to read more here is a good study, it's heavy reading but gets straight to the point: Learn About Proton Therapy (
https://tinyurl.com/learnaboutprotontherapy)
However, as you may have seen in the news over the last year or so, this treatment option is not scheduled to be available in the UK until, at least, 2018 (See: Proton Beam UK (
https://tinyurl.com/protonbeamUK) ).
This is, regrettably, too late for Sheena, so we have chosen to consider an established Proton Beam therapy centre in Prague (Proton Beam Therapy Prague (
http://www.proton-cancer-treatment.com/) ) that offers this treatment and has experience in treating Nasopharynx Cancer.
All assistance is gratefully received:Unfortunately we fall foul of the UK system as the NHS nor our health insurance will cover the treatment in Prague as it is not currently part of the UK multidisciplinary guidelines for treating nasopharyngeal carcinoma. Referrals for Proton Therapy treatment abroad are typically reserved for those under the age of 24 years old!
Our choice is to accept the standard UK treatment and the high probability of long-term complications or we personally fund the Proton Therapy treatment ourselves providing the best possible chance for Sheena to be cured AND significantly (but not completely) reducing the risk of long-term complications. This is clearly not even a choice, Sheena deserves the best option available.
The Prague treatment costs £65,460 with the additional costs of flights and accommodation for the 7-8 weeks we would need to be in Prague. This is clearly a huge sum of money to payout (upfront) and excludes a number of possible additional costs (additional flights for close family, trips for the girls to see their mother, hospital treatments ... etc). We therefore need to pull together approximately £72,000 by the middle of November.
I am doing whatever it takes to pull together the funds to get this started and so I would be forever indebted to the Just Giving community, my professional network, friends and family for any support you can offer.
My commitment:
- Every single penny raised through this campaign will go directly to Sheena’s immediate treatment.
- We will set up a page on CaringBridge (
https://www.caringbridge.org/visit/sheenatay-schyma (
https://www.caringbridge.org/)) so people can follow her journey.
- As soon as I possibly can, I will personally donate back the exact same amount raised through this Just Giving campaign to Cancer Research UK.
Proton Therapy does not appear to increase the chances of curing Sheena's cancer, nor does it reduce the chance of a reoccurrence but it does offer her the very best opportunity for the quality of life she deserves.
It's one step at a time, but I am determined to make every single step count!!
