Hi, on Friday 9th June I received biopsy results, which confirmed I have ocular cancer of the right eye. 

The immediate shock at hearing those words hit me hard. I attended the follow-up appointment alone, expecting to be told it's not cancer, but scar tissue & remnants of the abscess sac that had developed beginning of last year and retinal detachment. 

Between April and June last year, following treatment for the abscess, scans showed the area had flattened, and scar tissue had developed. I was referred to ocular oncology because Uveitis had noticed some slight pigmentation.

Oncology checked scans and were happy that there were no signs of a cancerous tumour. Said they would have expected to be consulted when I originally presented to A&E in the April. Reassured me that cancer tumours don't become infected. 

Unfortunately between June and Dec the empty sac had started to "fill" with fluid almost looking like a water balloon. 

Jan of this year things really kicked off. I developed an infection in my right ear, which caused constant nausea and vertigo. This led to a throat infection. The infection lasted until mid March. I now have another infection.

ENT checked for head and neck cancer in February which came back negative. Good news. But the issues remained with vertigo and ear pain which extends into my neck below my ear haven't resolved.

Eventually Uveitis again referred me back to oncology in March this year, same time as Retinal Medicine checked to see if they could diagnose why the sac continued to fill with fluid. Decided not a retinal issue.

It was decided I would need a biopsy carried out by oncology because on the scans the "growth" whilst rapidly filling. Between Dec c& April it had grown by 3mm but was not showing as a typical cancer, despite lots more pigmentation. So it was very confusing as this wasn't something they'd ever come across before. 

That's why on Friday I expected to be told no cancer, just continued scaring. 

Over the last 14 months I've had so many different cancer tests to try and find out what has been causing me so many infections, constant inflammation and pain throughout my whole body. Up to this point, all tests have thankfully been negative. 

I'm feeling numb, confused, scared angry and frustrated. So many questions.

Just before I was told on Friday, the consultant (a different one to who I've been seeing) was setting up the ultra sound scan and quietly asked "do you have anyone with you today". I've never been asked this. I immediately started to "zone out" I came crashing back to earth 10 mins later.

I've been told it's treatable. But why do I have such an ominous feeling? Why do I not trust this optimism. Plans are now in place to have proton beam therapy in hospital. Due to have op for the marker clips beginning of July. I guess recovering from the biopsy on 22 May has given me an insight as to what to expect post op. 

To be honest despite being told there's treatment, it was the additional "but" and what would happen if proton therapy didn't work. 

I wasn't informed of the actual name of this cancer, only that as well as the original "scaring" being a tumour, the actual "sac" wasn't a fluid filled "balloon" but a second tumour. 

Two tumours.

The ongoing issues I've had with my right ear which has felt as though something is trying to force its way through the skin into my ear, could be linked. Not a blocked tube as GP suggested. 

I am so confused and don't feel like I have any constructive answers or understanding of how a retinal detachment plus retinal abscess which resolved itself, changes to cancer. 

As above, I'm numb. I'm also slightly angry and frustrated. An amazing Uveitis surgeon was the only one who noticed the abscess and this saved my life from sepsis. Months later noticing increasing pigmentation & made urgent referral. His gut instinct was correct even though not his remit. So how could my two tumours not be recognised by oncology. All this time reassured not cancer because it visually didn't look like a typical growth.

There is a part of me the feels resentful. Like time wasted. I haven't even been told what stage the cancer is, only that the "sac" tumour is aggressive. I haven't been offered any counselling, just sent straight to pre-op assessment for blood tests and referral to another hosp for lymph modes to be checked because suspicions linking continuous ear problems. 

I'm sorry I've gone on such a tangent here with so much info about my current status. It's my first post and I'm slightly lost. I think I'm ok, have bouts of crying, but have to remain positive for my son who has just turned 20 and is autistic. He recently finished 2nd year at uni. I'm also a single mum. The last 3 yrs have been such a struggle in every sense. Striving to get my health sorted, and myself better, so I can crack on with all the things put off. Now this. 

I'm exhausted.