This appointment to talk about my diagnosis and planned operations with the Specialist Nurse was made for me when I asked to see my consultant, (who despite presumably being the one who is deciding on what treatment I need, has never seen me), before the day of the first surgery. I thought the appointment was to see him until the appointment details came through in writing.
I then managed to book a consultation with my fully booked consultant by telling his NHS Personal Assistant (PA) I was prepared to pay for a consultation. I knew that she wasn't allowed to mention going privately unless I raised this first. I was offered a telephone conversation with him on NHS but decided I wanted more time and for him to see me face to face so, given that he's an oculoplastic surgeon, he can see my face and eyelid. A private consultation was available the following week in his weekly private clinic session. Phew! And it isn't going to cost as much as I thought and my research suggested it might. I forgot to ask though how long the consultation might be. I was asked if I wanted to cancel my NHS appointment with the nurse. I asked to keep it explaining that she had been very helpful about hygiene which I wanted to discuss with her. The phone call was also useful in finding out when my Consultant will be back from being away after my second operation, in case I need to have a third operation. it's is the greatest relief knowing I'm going to have the opportunity to discuss my operations with my consultant in advance and soon. That's what was really bothering me - the prospect of going into the first operation 'blind' with only a very brief opportunity to discuss it when signing the consent form, by which time I'll feel under pressure to do so, just moments before going into the operating theatre. i know there are probably patients who much prefer not to know in advance but I'm not one of them.
The nurse was lovely, really friendly and sweet. It was much easier meeting with her than last time. She was very helpful on hygiene - a preoccupation of mine because I've had a recurring Superbug that, as I understand it, could be very dangerous if it got into the surgical wound. I'm so pleased I managed to take a friend with me who was able to make some notes so I could recall the conversation. Also afterwards when we reviewed some of it, I realised that I didn't fully understand some of the things I'd been told. It was helpful to have my friend's take on them and also when neither of us had fully understood something, that it wasn't just me. It was also helpful that we arrived with enough time to spare before the appointment for my friend to look over the information I'd been sent about the operations and the list of questions I'd prepared for the nurse and the separate ones I'd prepared for the consultant. So nice and proactive of her, she'd already been reading up about MOHS surgery off her own bat in preparation.
I did find a little more out about my biopsy results. It's a nodular Basal Cell Carcinoma. However I didn't find out if its got a clear margin, nor whether it's infilitrative. She was able to confirm that it was a keratin horn that was growing on top of it. I asked, given that it changed from being a benign papilloma last year into a BCC, if it could turn into a Squamous Cell Carcinoma (SCC). I thought it was rather a ridiculous question to ask. However her answer surprised me. She said that BCCs don't change into SCCs. However it could be that there were some Squamous (pronounced Squimous?) cells in my eyelid which could show up after the surgery in the lab report. I'm not sure if this is a general thing, or specific to me? Perhaps it's specific to me because of the keratin horn the lesion grew? I've now read that sometimes SCC's grow keratin horns, however my reading about keratin horns before suggested that BCCs do too. Perhaps this uncertainty about whether I might also have Squamous cells in my eyelid was why she wasn't able to predict how big the excision operation will be. It'll be very interesting to see if the Consultant will be able to tell me more or whether indeed he really won't know how much tissue he'll be removing until he opens my eyelid up on the day. I was told that I was being booked in for a three quarter's of an hour operation when the first surgery appointment was booked and an hour's operation for the eyelid reconstruction.
I was surprised that the nurse was unable to tell me what the extent of my surgery might be i.e. how much tissue is going to be removed. She does know not wanting much of my eyelid removed is a bit of a hang up of mine! So perhaps she was trying to be reassuring? She couldn't say whether it is a small lesion or a big lesion. She did tell me that a 1.3 mm margin had been removed during the biopsy which leaves me quite hopeful that I'll only need to have the original biopsy area excised (which has now grown back) and another 1.4 mm tissue taken round where the lesion was. She was clear that I will have to have more depth of tissue removed. I've read now that nodular BCCs develop where there are hair follicles? Diagrams I've looked at show that the hair follicles are much deeper down than the place where the BCC is. Perhaps the consultant will have to excise down to the hair follicle? Certainly the biopsy was pretty shallow. The point that kept on coming up is that how big the operation is will all be down to the histology report. The surgeon will operate to the information in the histology report. Presumably this won't be available until after the first operation? Come to that what is histology? Interesting that I don't seem to have processed and identified what parts of the conversation I didn't understand as we went along. Monitoring that and identifying that is a skill in itself. So much harder to take in information when one is emotionally involved. Partly my lack of identifying what i didn't understand was perhaps because I had so many questions I wanted to get answers to and I didn't know if there would be time so I was focused on them and getting onto the next one. Perhaps I should try that thing of repeating back in my own words what I have understood next time? As it was even after I came to the end of my list of questions the nurse asked me if there was anything else that I wanted to know. I felt that she gave me plenty of time. She was also very sweet in saying that she was looking forward to seeing me again. I was able to respond that I too was looking forward to seeing her again. I then thought that, yes when I see her again it'll be good as I'll be the right side of my operations with, hopefully, all the surgery behind me and the healing process underway.
Other helpful information from the nurse was:
I don't know if I can take two people with me to sit in or just outside the day ward, to be on hand for hearing the lab reports and the conversation about next steps with the consultant, especially if it turns out there are Squamous Cells? Perhaps I should ask in advance so no-one has a wasted journey? I dk if it's possible for my Advocate to set up a reserve in case my friend can't make it when she'll probably only know for sure if she can at short notice? I'll ask my Advocate after I see Consultant. Maybe she can phone the hospital and negotiate?
One of the things I find difficult is the assumption by hospitals that one can produce a friend or relative to accompany one to operations to take one home afterwards. It obviously makes the staff's life much easier as then they don't have to walk you down to the hospital entrance because your depth vision will be impaired due to not being used to having one eye patched. They have the reassurance of handing you over to someone. However not being able to necessarily produce a suitable friend or relative makes me feel more isolated. It makes me feel vulnerable and it's very poignant. It also makes me feel inadequate that i don't have someone to produce. Had my mother not died of cancer, albeit 10 years ago (and as she'd now be in her 80s, she might not still be alive anyway), she would be there for me and taking on this role. It was helpful to explain my family situation to the nurse and she was concerned and sympathetic. I hope that the hospital will understand now that I may have to turn up for surgery and appointments unaccompanied and that there will be no further assumptions that I must be able to produce someone. I also have found it helpful to know that I am not alone in this difficulty re not having someone I can necessarily turn to to accompany me to operations and look after me afterwards. I know this because others have approached me asking me to be their responsible adult and look after them for 24 hours after day surgery under general anaesthetic. It is a problem for quite a lot of people. Also I have friends and there are people in my community who don't have any relatives to go to for Christmas.
It has made all the difference in the world having a kind informed friend to support me and be concerned for me and actually bother to make a practical difference. When I got my cancer diagnosis what I needed to hear from people was that they were sorry and that they minded for me and about me. I'm at an age where there are and have been quite a lot of friends who've got cancer, usually of a much worse kind than me, so it's not as though my friends haven't had experience of friends having cancer. I've had a lot of: "I'm so sorry to hear your news. Do let us know how you get on. We'll be thinking of you." which is nice, but only one offer of: "What can I do to help? You must let me know". If i hear that a friend has cancer, "What can I do to help?" is my standard response if I think that i might be able to do something for them. But then i have more time to spare than most. I think that those who have been through a similar situation themselves are the most likely to be helpful and sympathetic.
i do generally find it hard to be upfront about feeling vulnerable and to state straightforwardly what i need or want people to do for me. it's helpful that Macmillan encourage people and me to be honest and up front. i have found with friends that if i make a jokey flippant quip in an email about what i may end up looking like, i may get a jokey flippant quip of the same ilk back which is not the response i want at all. I'm on a real learning curve here.
I am making a point of telling people I've got a (non-dangerous) skin cancer in my eyelid and and that i may end up looking a bit different. i think that is hopefully easier than coping with people's reaction when unprimed they see my eye area looking like a dog's dinner and also i hope that it will elicit sympathy and a more supportive reaction. i am hoping to avoid, "So you walked into a door?"/ "Who did you get into a fight with this time?" (I never fight!) quips and questions or an assumption that I've had cosmetic surgery! - not one my friends are likely to make!
It's easy to spend ages and ages researching cancer and treatments especially as i want to explore having MOHS surgery privately and if my Consultant can't help me on this but thinks it's worthwhile, there would be a lot to get organised if i want to make sure I have a concrete alternative before my NHS date for excision surgery at the beginning of September - less than two weeks away! Even if MOHS is judged to be a better option, I might not have found anyone who'll commit to saying they will do it by then, let alone finding both a dermatologist and ocularplastic/eyelid consultant who can operate within the necessary/ desirable timescales of each other. If I were to delay my NHS operation while I research if I can access MOHS, then i'll fall outside the NHS 30 days time limit for beginning treatment after diagnosis of cancer. Then i have no idea how long I'd have to wait. Could be months? Or if my oculoplastic surgeon would still operate on me under NHS if I stick with NHS standard operation. I don't want to fall between two stools. It's good to have been reassured that my cancer isn't dangerous but I don't know how much it might grown or how fast and if a delay could necessitate more extensive surgery. This feels like playing chess. The other alternative is to just turn up and go along with the planned surgery without looking into alternatives. However even though I've been told it's minor surgery, if it leaves me permanently disfigured I think re my work - I'm a locum without a contract at the mo. and need to be able to make an instant rapport with clients, and re wanting to find a life partner, the effects of the operations would be likely to be life changing.
Rang MCS nurse who was really helpful. Her comment surprised me, in that when I told her that I was scheduled to have stitches in for two weeks after eyelid reconstruction, that it sounded to her that i was having a only a small operation. i had thought that having to have stitches in for two weeks sounded like i was having a much bigger operation than i expected. She explained that having stitches and having them in for that length of time is because the face is a very mobile area. It's so easy to make assumptions as a lay person, not based on enough knowledge. It's so much harder to deal with things as a patient than as a professional dealing with one's own area of expertise for which one has been trained with the resources of good access to a team if one has any questions one needs to ask and being treated as a peer equal, all on paid time dedicated to that purpose. I am not a health professional though and I know that they don't have it easy at all and are under great pressure and do a fantastic job. it's simply my reflection on how i find the contrast between dealing with things as a professional and coming at things as a patient.
