The following Spring i.e. this Spring the lump reappeared around Easter time as it got sunnier.
It started to become red and bleed when I itched it. I told myself, "You've already been told it's benign" so I didn't go to my GP who might think I was being over anxious. It then started to grow a white/ yellow top. This began to stick up through my eyelashes when I closed my eye. It grew noticeably longer. I made an appointment with my optician. I'd ask his opinion. If he was concerned he could write my GP a useful letter saying so. I decided I should get my first pair of prescription sunglasses anyway and it would be better to have an eye test so they were made to an up-to-date prescription.
Before I saw the optician the top of the point of the growth began to curl over and it looked like a little horn. It looked scabby in my magnifying vanity mirror. The optician told me it was a keratin (cutaneous) horn. He wrote a letter to the GP for me asking that an urgent referral be made to an eyelid surgeon and stating that the issue was my tear duct and moisture levels in my eye - wet eye/ dry eye.
I googled eyelid surgeons and found that the one at my local hospital hadn't been replaced. I googled eyelid surgeons across the region and couldn't find one. I did however find an oculoplastic consultant. I went to see a locum GP as this was the earliest appointment. She said she'd refer me that day and include the optician's letter but that she wouldn't be making an urgent referral as cutaneous horns are common. She commended me on locating an oculoplastic surgeon and said that was very helpful.
I goggled cutaneous horns and saw that they in themselves aren't a concern although if left they can grow and then put pressure on nearby structures but their base needed to be investigated especially if it appeared inflamed as they grow on other lesions which can be benign but can be cancerous. I'd also noticed that some of my eyelashes had been absorbed and knew that wasn't a good sign. When a black looking spot appeared on the vertical surface of the horn about half way up I started to worry if it could be a melanoma.
A couple of weeks later or so, I had a phone call explaining that it had been decided to carry out a full excision biopsy and asking me when I could come in. The appointment booker was concerned that the oculoplastic surgeon was about to be away on holiday for three weeks and that another relevant consultant was going to be on holiday at the same time for two weeks. He didn't think it should be left for that long. Could I make a cancellation appointment if one came up? "Probably". He then rang me back very soon and said the clinical director had said that a colleague who worked with her could do it, could I make this new date which was 10 days sooner? Yes I said. Googled new surgeon. Found that she was a trainee ophthalmologist. Had no way of knowing how experienced she was, i.e. whether she was in Year 2 of training or Year 6. Googled full excision biopsies. Came to the understanding that it was usual when doing these to take 3 mm clear margins. Calculated it would mean removing 1 cm diameter of my lower eyelid. Didn't like the sound of that. Rang and asked to see surgeon in advance. Turned up for this appointment but discovered it was with specialist nurse instead. She confirmed 3 mm clear margins are usual. Explained my concerns, e.g. relative who ended up with unslightly, dysfunctional, distorted lower eyelid after surgery near eye to remove a patch of pre-cancerous skin. She said, "I'm just going to ask the surgeon if she is going to remove that much tissue." Surgeon came in and looked at it and said she would just take a little bit, rather like biopsy I had had before. If it proved to be benign then I wouldn't need further treatment. I felt relieved and reassured that only a little bit of my eyelid was going to be removed.
In the event, after then googling on Google Images pictures of eyes after repair from surgery, thought they looked very good. I had been too scared by what I might see to look before. As my lesion, during the two weeks or so of waiting for the biopsy, became pretty itchy and my eye surround became achy I changed my mind about how much of my eyelid I was prepared to have removed. The ache wasn't so bad as to need pain killers but I could no longer dismiss it as a figment of my imagination. I realised that if it was still benign I was unlikely to be offered any further surgery (like last time) and anticipated that I'd be sitting there next summer having another biopsy when it grew again. I really don't want to have biopsies on my eyelid for three summers in a row.
I did a lot of internet research to find out about eye structures and skin cancer and biopsies etc. so I could understand what was going on. I guess I had a bad feeling about this lesion and the way it was behaving, particularly that I couldn't see some of my eyelashes. I felt anxious about the results in case it was cancer and was on a bit of an emotional yo-yo. I felt isolated and fragile. I don't normally get angry but I felt quicker to anger and take offence and view things in a negative light.
One of my main concerns re biopsy was that I had contracted a Superbug, an ESBL producing Ecoli infection, some months before which I knew would be very bad news and serious of it got into the surgical wound. It was still active. I also knew that it was one that worried the nurses in charge of hospital infection control because I had met the concerned reaction of two of them at different hospitals about it before. I had asked the GP to state in the referral that I had this infection. The appointment booker listed me last on the surgical list because of it. This quite suits me as I live quite a long way from the hospital.
The nurse specialist I saw before the biopsy to discuss it was really helpful about what I could do to stop getting this infection in my surgical wound. The most useful tip was to put the antibiotic ointment I was prescribed onto a cotton bud to put it on my eyelid rather than using my little finger.
I went and bought supplies including big sterile pads. The surgeon said I could put that over my eye during the daytime if I wanted. However I wasn't fussed about during the day as I wear glasses. I decided to wear one at night because I sleep on my front and was worried about touching my eyelid/ eye with my fingers by mistake or my eyelid picking up the infection from my hands touching my pillow case etc. because although the Superbug can be got rid of using normal household cleaning products, it can also last in the environment for a long time if not cleaned. As I am allergic to normal soap, I knew that the laundry soap that I was using wasn't efficient at killing it. On the other hand there isn't much point in using soap I'm not allergic to as that gives me eczema and that in turn gives more risk of spreading the infection.
When I saw the specialist nurse she did say, "You are coming with someone to the biopsy aren't you?" maybe because I'd come to the discussion appointment on my own. I explained, "Absolutely not. I've been told I can travel home by public transport." to which she replied, "On public transport with someone". I knew I'd have my eye patched but had got quite used to this from wearing one for 48 hours after my previous biopsy. We negotiated and she said that I could travel by taxi to the train station and then by train. She wouldn't be happy to discharge me from the biopsy to travel alone on a bus. In the event a kind relative drove me to and from the biopsy.
On the day of the excision biopsy, I saw the surgeon to sign the consent form just prior to going into the operating theatre. It was nice to have met her before. I asked her if she could remove the lesion and a safe margin. (Completely contradicting the wishes I had expressed to her before). However she replied that that would be a bigger operation and it was far better to know what the lesion was first. In any event they weren't set up to remove more tissue when the consultant was not there. I told her that I didn't like the local anaesthetic injection. She sympathised but replied that she was afraid that there was nothing much she could do about that. In the event however, having put eye drops in my eye, the inside of my eyelid was pretty numb by the time she put the injection in and it was hardly noticeable. Much better than when I'd had the injection near the corner of my eye before the previous biopsy.
For those of you who've never had eyelid surgery before, you lie on a couch with a little scoop under your head which is comfy. The surgeon sits behind you so you don't really see the instruments or what she/ he is up to. This time a drape was put over my face so that all of my face was covered apart from my eyelid and a little bit of my eye. They seemed to be made out of paper and I could see light through them so they were comfortable and they felt very light. I liked having them there. I was put at my ease and could talk to my surgeon if there was anything I wanted to say. When she inked round the lesion, I could feel my eyelashes, but I was reassured because of my previous biopsy that I wouldn't feel a thing during the operation.
The biopsy, which I had been told by the appointment booker would take half an hour, actually seemed to be over very quickly, like the previous one which I had been told would take about 10 minutes. I asked if all the tumour had been removed. I was told that there was plenty of tissue for the lab. I remembered to ask when I'd be getting the results and how. I was told the earliest that it could be would be in a week's time but it could take several weeks and it would be by phone.
I went through the recovery time of not being able to wash my hair for myself, washing my hands copiously before putting them anywhere near my eye etc. and had a pretty quiet time making sure that I kept my eyelid dry. I was exhausted and slept a lot. When I took the patch off my eye after 24 hours my eyelid did not look nearly as bad as I expected. My eyelid and eye didn't looked bruised. They didn't the previous time after the punch biopsy either. Only a very small amount had been removed and it looked pretty shallow. By the end of about a week I couldn't even see where it had been removed from or that I'd had any surgery at all. The only give away was that I was still missing a few eyelashes.
I then went through waiting to get the biopsy results. The best days were when I was busy doing nice things, too busy to think about cancer at all. The worst were probably when I endlessly researched skin cancer etc. After about a fortnight I had a lovely weekend away when I was far too busy to think about the prospect I might have cancer at all. The next day I thought by the afternoon, well it's been three weeks now. When am I going to hear? Maybe by next week i.e. a month after biopsy, I can reasonably ring up and ask about my results. The next afternoon I got back to a message on my landline from the appointment booker saying he had got my biopsy results and needed to speak to me. His keenness to get hold of me didn't sound to me as if the results were going to be benign. I composed myself and dialled him and was pleased to get straight through. He told me it was a BCC to which I responded basal cell carcinoma so he knew I knew what he was talking about. He told me that he needed to book two appointments with me, one for surgery one, one for eyelid reconstruction, and two for follow up and we agreed dates and times. He explained that the consultant was going away after the date for reconstruction surgery. I was pleased that the appointments were in only about a month's time. I told him the date of my planned holiday and he made a note of it. I asked now that I'd been diagnosed with a basal cell carcinoma whether I should be referred to a dermatologist to check me over to see if I had any more. (I was aware from my research that in the normal course of events if the suspected cancer was anywhere but by the eye, one would be referred to a dermatologist and that this all over check would likely happen automatically.) He said it was up to my GP if she wanted to make a referral to dermatology. I also rang back and let him know that my eye surround had been aching again including the corner of my eye and perhaps this should be checked out. I also explained that I didn't think I would be able to give informed consent for the first operation to go ahead without discussing the operation with the consultant on a separate day to the operation. (Imagine saying "No" to the operation just before going into the operating theatre, when you've only just had the chance to find out about what the operation consists of and what the risks are. Legally you can but what a waste of surgery time and where would you be then with the cancer still in your eyelid? Who would realistically say, "No" just prior to surgery? But if you can't say, "No" how can you really say, "Yes"? Also there'd be no research time to follow up any information or explore alternatives.) The appointment booker explained that the consultant was fully booked until my surgery. He said something that I didn't catch but booked me in for a discussion appointment. He said he'd mail me out the appointments and some information about the surgery.
After a few days the letter arrived. It looked to me from reading the information about the surgery and looking at the appointments that it was bigger deal than I'd expected. Having stitches removed two weeks later looked like I was having bigger surgery than I'd anticipated. Also I wouldn't be having my eyelid construction on 7th if the results hadn't come back from the lab as clear. What then? I also saw that the appointment to discuss the planned operations was with the specialist nurse and not the consultant as I'd thought. I knew from my previous experience that there were some questions I wanted to ask that a nurse wouldn't be able to answer. I also knew from my research that I definitely wanted to explore having MOHS surgery with the consultant even if I had to go privately to see if this would be a better treatment for me with less risk of infection of surgical wound, less tissue removal, knowing that all the cancer had been removed straight away, earlier reconstruction of eyelid, less scarring, less eyelid damage, better outcome, gold standard treatment, treatment of choice in USA and France. Hard to get hold of on NHS in UK with potentially long waiting times. But how to get hold of consultant given he was fully booked? How not to fall between two stools and end up neither having MOHS surgery and scuppering dates for NHS standard surgery and maybe missing the opportunity of being operated on by such a good, experienced oculoplastic surgeon himself. How to handle this?
On getting biopsy results, I had re-referred myself to local Macmillan Cancer Advocate. On not getting appointment to see consultant prior to surgery I rang her. Explained issues. She advised best to call consultant's private PA and book private consultation seeing as consultant's NHS time fully booked, tight timescale before op., and I was prepared to pay for private consultation. Would I like her to make that call for me? "Yes please". However she couldn't get through to her and couldn't get a response. She did however establish that the private 'hospital' did not have a policy not to treat patients with my particular Superbug and that they had had patients with this very infection. Encouraging. She emailed me to suggest I might want to make the call herself the next day, her day off.
Rang private PAs mobile number. But it didn't sound right. There was no message on it. Decided to take the plunge and do as my GP had suggested. Ring his (NHS) PA and say I wanted to discuss my treatment. Rang PA. Got straight through. Started the call by saying that I thought this was tricky call to make but my GP had suggested it. I explained that I wanted to see Consultant before ops. but I knew he was fully booked on NHS and I couldn't get through to private PA. She clarified whether I was an NHS or private patient. On hearing that I was an NHS patient she said she thought the best thing would be if he rang me, would that be okay? I explained that I was prepared to pay for a private consultation. She immediately booked me in for one, only a week away. It didn't cost as much as I thought. Definitely towards the lower end of what I'd researched. But forgot to ask about how long appointment would last. Did I want to cancel appointment to see nurse? I explained I wanted to keep it because I knew the nurse was very helpful on hygiene. She reassured me that making the appointment for a private consultation would not affect my NHS surgery dates. Phew! That call was a whole lot easier than I thought it would be 
