hello all,i had a stage 2 medium size tumour in my throat ,i had seven weeks of radiotherapy which finished on the 31st of august 2018,i suffered terrible side effects,horrendous muscle pain,muscle and skin infections,part paralysis in the back of my neck ,excessive external and internal neck swelling ,dizzy spells ,fainting ,not common side effects at all,i never had a sore throat or had too much problem swallowing ,which are very common,and i felt constantly very ill,not one day went passed were i didnt feel as though symptoms were getting worse ,told support team time and time and time again ,my symptoms are not the same as other people i talk to,may as well have talked to a brick,got so ill a district nurse raised severe cause for concern when she had found me collapsed in the bedroom,amazingly the macmillan nurses and hospice nurses were than extremely concerned ,they didnt show much concern over the 3 months after treatment when you hardly see anybody ,but they then wanted to see me on a regular basis ,too little too late,i still kept telling them about what appeared to me as adverse reactions,dizzy spells and fainting far worse,hallucinations,palpitations,severe numbness in the arms/legs for hours on end,collosal swelling in the front ,sides and back of the neck,i still have no feeling in the back of my neck,they just kept saying everybody different in recovery,kept saying ,people i talk to with cancer ,think there is something very not right as they dont get symptoms like that,and i should keep shouting up,did it for long enough,and got nowhere

anyway 2nd MRI scan brought forward to 30th November 2018 because i was experiencing so much pain,went for results on the 20th December ,the cancer Doctor said the tumour had shrunk from 68.5mm in the centre to 0.85mm ,and said there is NO evidence of cancer at the site,said was very happy for me that the treatment had been succesful ,but did not know why the tumour site had not started to heal in 4 months and was still red raw and swollen,but was happy for me to be transferred,so they could investigate the pain and swelling as they are experts in it,pain and swelling got progressively worse over xmas ,so the macmillan nurse at rotherham scheduled an appointment for the 8th of January 2019,instead of mid-January,all well and good,the ENT doctor who i had not seen since last may 2018 ,remarked how well i looked,was pleased to see i was eating /drinking normally ,also remarked i was doing so much better than a lot of other people who have had radiotherapy,and still couldnt swallow ,i am 55 years old,the ENT doctor had my 30th november scan up on his board which backlights it,he asked if the cancer doctor showed what to look for on the scan,told him yes ,said was clear and was very happy for me,the ENT doctor said is a very good MRI scan and is very promising for u to make a good recovery,talked a bit more about my symptoms,excessive pain and swelling etc ,then said ,the bit u dont like ,camera up your nose,lets see if we can establish what is stopping the site from healing,he agreed with the cancer doctors original thought of stomach acid erosion which he said responds really well to gaviscon plus ,anyway camera up nose ,he went deadly quiet ,and i could see the look of extreme concern on his face ,took camera back out after he had taken pictures,then said i cant believe what i am seeing here,i dont like the look of it at all ,there is another tumour already come through on the original site and is already half the size of the original which had grown over at least six months ,the new one has caused extreme damage ,has destroyed voice box and severely damaged all the new healthy cells which had grown back,they are pound coin size blisters everywhere ,the ENT doctor said even without a biopsy i know tumour cancerous and u are extremely ill ,i am so sorry,told him the pain was also very bad in my chest,he said cant gloss over it ,there is a strong possibility it has spread to your lungs and wouldnt be treatable ,MRI and CT scan are next tuesday,biopsy wednesday ,has said i have no option if just throat to have laryngectomy ,told him ,that is MY decision not yours,started to pull faces ,then said it needs cutting out and go for the cure,told him that is what u said about radiotherapy going for the cure and that didnt work ,and i added when surgery is done is always complimented with chemo/radiotherapy but as u know you dont do again in the same spot so how can u guarantee it will work ,u could leave cancerous cells ,then after i been mutilated u could say ,sorry hasnt worked ,started pulling faces again ,asked about the odds and survival chance ,refused to answer ,yeah i will jump at that chance,not

anyway is very advanced ,he trying bully me i think into agreeing to mutilation surgery (laryngectomy )because he said has to be done quick 2/3 weeks to have any chance ,i told him I will make a decision based on the scans ,is NOT a decision to be made lightly ,i have to suffer the consequences for a lifetime,still cant take in ,cancer specialist had given cancer clear on the 20th December ,which i obviously was elated about ,only to find out 19 days later ,cancer is far worse than it was to begin with,kicked in the teeth not quite cut it,wife and children totally distraught because they had been told that i had been told cancer clear,and now is strong possibility Dad and husband wont be around for much longer

take good care all   Robert x