Hi I'm Nadig and everyone calls me Nads. I am normally an extremely private person. I feel extreme emotions of embarrassment, shame, sadness and disbelief that I’m writing here.
However I have been guided by loved ones as I cannot die and need a chance to see this world and be there for this amazing son Kiyan and husband Thomas.
You see, I have a kind, young, sensitive, loving, creative and intelligent son Kiyan that I want to support through his life and sometimes this difficult world. I want to hold his hand daily and tell him I’ll be there to help him follow his dream.
I need to be there for Tom who will struggle if my premature death occurs. I cannot bare the thought of them losing me and being alone without me. We are such a happy family and the chest pains anxieties anger stress and disbelief is unbearable, mostly for them both.
I also want to spare my parents brother and family the horrendous situation of losing me before their time. I don’t think they’ll be able to live a normal life again.
About my cancer
Around July 2022, I had a sudden nose bleed which did not appear normal but though it was due to a hot sunny day. I thought I would get checked up at GP who didn’t think anything of it.
Went for a blood test which never took place as they delayed me and had to leave to pick up son from school.
Went away for our pre planned vacation with my Tom and My son to the paradise island of Mauritius for 6 weeks. This was one the best holidays ever and only had 1 small bleed.
As we landed back to the uk, I become very sick with major nose bleed including clots of blood and I felt very weak fatigued and major headaches etc with bleeds continuing daily.
It became very embarrassing as couldn’t go anywhere without sudden bleeds.
Frequent GP visits became a big joke .. one day they checked by nose and said it’s a blood clot and then I quote said - ‘if I had the right tool I would jank it out’ and they laughed.
I then asked for a referral so I can pay for my own MRIs and Scans, which they refused on NHS and privately . The GP said don’t waste your money.
A few days later the bleeding was worsened and the ambulance came out wrapping my face to stop bleeding and said I’d be ok next day. They also cracked jokes and did not take me seriously.
On demand and almost threatening I got referred to ENT who saw a lump in my left nasal cavity and went on to do weeks of scanning and biopsy. 8 weeks later whilst fighting got a diagnosis, they told me reluctantly we suspect cancer which would mean many surgery.
After so many extra tests to my eye included, they accidentally told me they were considering removing my eye in the upcoming major surgery to remove the tumour. Once again this was not the diagnosis meeting but told my mistake.
At the official diagnosis meeting they told me I have an extremely rare cancer in the nasal cavity called olfactory neuroblastoma .
At that point it was weeks after the nos biopsy which grew the tumor, leaving me in agonising pains with my half face swollen and looking like a monster.
Despite planning the surgery for week after the diagnosis - Nov 2nd 2022 they called me night before surgery to say it’s canceled without explanation.
I then received a call from the surgeon to say it has spread to my neck and lymph nodes per my late scan. They also wanted to remove my eye Incase it spread behind or on the eye wall, which I refused.
They needed to find a 3rd surgeon. 1 for cancer tumour removal, 2nd one to reconstruct my forehead due to the tumour destroying part of my skulls.
Surgery was postponed by 2 weeks leaving time for the tumour to keep growing.
At the very same time I lost my job as soon as informed my employer of my cancer and illness. I was unemployed, trying to manage financially and terminally ill in a matter of days.
The major surgery planned involved 4 surgeons and 40+ medical team members in the operating room.
After 12 hours into the surgery they realised my head was swollen and could not be stitched back up. A scan revealed a major blood clot and another surgeon had to come same day leading to a total of 20 hours surgery and 4 days in ICU. They removed a 7 inch tumour size of a peach and cut my entire head to reconstruct my skull and forehead and remove lymph nodes cutting my neck open.
No follow tests and No scans were made for weeks and then sending me 2 months later to UCHL for proton beam therapy.
Only for them to cancel my treatment due to the tumour growing back since the operations back to 4cm. This all happened during Xmas and I tried to put a brave face for my son and family.
They sent me to Royal Marsden for chemotherapy for 5 cycles and then had major white and red blood cell loss.
I was admitted to hospital for blood transfusions and meds for 2 weeks kept away from people.
This led to me having major seizures breaking my skulls open and sent back in hospital in 2 weeks with more seizures and memory loss which came back once spoken with.
After July hospital stay I had 4 weeks of extensive and invasive radiotherapy with my own mask for my face behind the eye and nasal cavity and forehead areas. I endured extreme painful side effects with my face almost burnt and many other pains.
After the 4 weeks of radiotherapy I came back for 6 weeks scan and told they can’t see regrowth in nasal cavity.
HOWEVER we then received devastating news that the cancer has aggressively spread everywhere across my entire body and in my bones. Not only is it terminal and it is in my spine, arms , legs, pelvis chest bones areas and cervix etc
It is reacting like an agressive small cell lung cancer and inside the bones. There is little chance for cure and I am back on strong chemotherapy, which will be difficult to manage all contributing to healing me but destroying all good and bad cells in my body for 2nd time.
I am told my life expectancy is now 2 months if that and can be weeks and might not even see my sons 9th birthday in December.
I want to give it everything I have to research into other possible cures, which will cost me a lot but I don’t know want to give up.
I know it’s a lot. And some may ask am I worth it? I can’t answer that. But I know my son (who took 7 years of IVF), my husband who am married to 20 years, and my parents & brother all deserve the chance. My close friends, former colleagues and those who care, I believe, benefit from me being around. Most of all, I loved my life. I lived so joyfully. And still have much to give and contribute, especially as a MUM.
If you feel moved to donate thank you. And if you can share this amongst your community, thank you.
Regardless of the outcome, I want to show my son and family friends that I lived with a sense of optimism about the world. And when cancer came I fought hard especially for Kiyan my son.
We as a family are forever grateful thank you Nads Tom and mostly Kiyan xxx
Organizer
Nadig Suntokee
Organizer