Hi to anyone reading this. I am new to the site.
I was first diagnosed in 2014 with tonsillitis cancer (HPV related ) having had a non-productive cough for several weeks Attended 30 fractions radiotherapy - horrendous experience as collapsed after 12 sessions and ended up in isolation for 6 weeks.
Experienced CDiff 4 days after getting out of isolation. Eventually managed to get back to work.
2015 slow but insidious degradation of voice and increasing swallowing problems and increasing ear ache (a key symptoms) . Although consultant stated "could not see anything" problems increased.
2016 October - swallow and voice causing noticeable problems. Decision to biopsy under General Anaesthetic. Unfortunately, swelling to throat was such that a tracheostomy was performed to maintain my airway.
2016 November biopsy results show active tumour. Advised that required extensive surgery. However, extent of surgery would only be ascertained after start of operation.
The result of the 13 hour procedure was removal of tongue, removal of pharynx, larynx and most of throat. Reconstruction of throat and gullet with tissue flap from stomach.
I have no voice, no swallow, no sense of smell, no sense of taste, PEG fed. Cannot even spit or lack my lips. Larnxgectomy stoma. Supposed to stay in hospital for 21 days but "escaped after 10. Post-op 2 months returned to work!
All well for a couple of weeks but informed that tumour had recurred with a vengeance and further active intervention was futile. Prognosis set at less than one year! End process explained to me. If I bleed there was a high risk of death due blood loss being unstoppable.
May 2017 major bleed - lost 4 units of blood. Fortunately the A&E staff managed to address the situation before I succumbed to blood loss.
Consultant revised prognosis to less than 6 months (he had better be wrong).
On the benefits front PIP paid at higher level for both elements. DS1500 from GP ensured fast track of process. PIP back-dated! Also, I can still drive, so have successfully applied for a Motatabilty Car.
The ironic part of this story is that I am a nurse! My end process will be one of the following:
Succumb to a major bleed ;succumb to sepsis {already had admission due to infected teeth}; succumb to increasing fatigue due to tumour sapping all my energy.
Fatigue and swelling addressed with steroids. I occasionally get incredible ear ache addressed with paracetamol and morphine.
I live life day-to-day and to the full.
My advice to anyone who is in the same position as me - involve your family! Be honest. Don't feel sorry for yourself-enjoy the time you have left. Do not be afraid to use pain control - no one should be in pain!
Please feel free to ask me questions about my plight.
