Dealing with my emotions.

My emotions

When I had the prospect of my full excision biopsy, the results and then the diagnosis hanging over my head, I was feeling emotionally fragile. The whole process from when I went to the optician has been going on for about three months. After the diagnosis I felt a knot in my stomach for two days. I would wake up and think, "Oh oh, I've got cancer". I felt that I wasn't relating to people as 'normal' me. I'm also very good at ruminating over the same worries again and again until I become totally pre-occupied. I was also finding the whole process, not least not sleeping so well at times, tiring.

My ways of coping

So far, facing my fears has been really helpful. I have found that, even when realising that my surgery may be much bigger and possibly have a lasting and life changing impact on me, (despite being described as minor surgery - am I over reacting here?), I now feel back in control and grounded again. This even in the face of the unknown i.e. that it won't be possible to know the extent of the surgery and the outcome before hand.

• Being told that my BCC is not 'dangerous' is  very reassuring, including having that in writing, although 'danger' is a relative term.
• Knowing that I may be permanently, in my view, disfigured is not reassuring. However reading the experiences of others on MCS forums who've been through this with fortitude and come out the other side, has been really helpful. Researching the help available to learn to camoflage scars has been useful too and I'm going to put some time into seeing how I can access these services so I can hit the ground running as soon as my surgical wounds have healed enough.
• The thing that has been the biggest relief has been the test results to see if I've still got the Superbug, coming back clear from it.  Looking after my biopsy wound, knowing the dangers of it getting infected with the Superbug, if my hand hygiene and other hygiene wasn't immaculate was concerning and wearying and took a lot of doing. I had a pretty good idea of how destructive and even deadly it could be if this infection did get into the surgical wound. I was constantly washing my hands. So it's a great relief not to have it actively at the moment knowing I've got more extensive surgical wounds coming up and a longer healing period. I very much hope to stay free of the Superbug.  
• As I'd hoped, professionals so far have immediately bent over backwards to be helpful and sympathetic if I've told them I've got cancer.
• I have found that having 'cancer free' days and blocks of time where I can immerse myself in other things and normal life and just not think about cancer at all is very good. I'm really pleased to find that I can switch off from the subject and concentrate on normal things. In fact I think that it is essential.
• Having done a Mindfulness Course in the past has really helped me. I know I have the techniques to stay focussed in the present and redirect my thinking from thoughts I don't want to dwell on at that moment or alternatively to focus on them during meditation so they somehow pop out of my head - like a bubble bursting.  I keep meaning to get back into doing Mindfulness Meditations on a daily basis. It's just very good to know I've got this resource there. I'm really hoping to do a Mindfulness and Compassion Course which as I understand this is about self-compassion for starters. I've been wanting to do this anyway and am already on a waiting list for the Autumn. I do hope if I get a place on the course, I can get there as I don't know for sure if I'll be able to drive. The course facilitator advised me to really nurture myself when I told her about my diagnosis and forthcoming operations. That has proved very helpful advice and I've taken it to heart. It's like feeling, "I know what I am meant to be doing: I'm meant to be being very kind to myself and really looking out for myself. That's official so I've got permission to give this and me priority." I'm going to buy the book she recommended anyway even if I'm not able to start on the course in September.
• I'm finding that writing this blog is helping me engage my adult, professional, observer side and at the moment stand back a little from the process maybe? I've long been interested in analysing how complex systems work and interface, looking at the context that surrounds them and exploring mazes of how resources can be accessed. So I am looking at going through this cancer process as a bit of action research in a way. A bit of a case study perhaps?
• I remember being given a book by a friend when a mutual friend died of cancer. It is called, "Tuesdays with Morrie" by Mitch Albom. It is about an old man with terminal cancer. He looks on life as an interesting journey of experiences and so faces his cancer in this way. Of course I'm not in this circumstance at all as my cancer isn't 'dangerous' - very lucky for me. However in some ways I'm looking at it as a learning experience, an interesting process. Maybe I'll re read the book? Also I recall reading an article by someone who was pretty ill with cancer who was a doctor I think, who decided to concentrate on the amazing and to her somehow beautiful molecular structure of the cancerous cells and their mechanisms. If I had her name, I'd get her book, if she wrote one. Does anyone know? What appeals to me about her approach is that I have always been interested in biology since I was given a microscope at the age of 10. I'm in danger of my BCC  becoming a new hobby!  (This emoji is a bit what my face or at least right eye may look like after surgery - I'm developing a one track mind!).
• When my worries were at their worst point, I started to read Dick Francis novels. Dick Francis heroes are so brave that I find that by the time I've finished one, having identified as the hero while reading it, I feel much braver! I'm going to try and stockpile a few for the bad times ahead. I should definitely round up some talking CDs in case I can't read. We've got some talking tapes. Can I find a tape recorder that is still working?
• Exercise has been really helpful for unwinding and also to help me sleep properly. I've found walking with the Ramblers, circuit training at the Leisure Centre and swimming in the sea just wonderful. Also spending time with friends. In a way the fact that I may not be able to take this kind of exercise for a while and certainly not swimming in the sea, makes it almost more enjoyable and precious.
• My number one way of getting back to sleep when I wake up in the night, is a hot milk drink. I put Ovaltine in it. I then read and within about 20 minutes, I usually feel sleepy and drop off again. Sometimes I find it helpful to eat something carbohydrate as well. Hot milk has a substance in it that naturally promotes sleep. This is not specific to this cancer journey. I generally wake up in the night and then go back to sleep. The Superbug's effects usually meant I had to get up at least once in the night and now its an ingrained habit.

Why I am not worried about the actual operations themselves.

I'm lucky that I don't feel anxious about the actual forthcoming operations themselves. It's their after effects that worry me, rather than the actual experience per se. I know from reading the skin cancer online forum discussions that some people do get very worried about the actual biopsy operation. I guess I was lucky in that, although I know that I was very anxious about the biopsy last year, as I went from being told I needed one to having it within less than 48 hours, (because it was deemed so urgent and the eyelid consultant was leaving his job within 48 hours), I didn't have much time to worry about it before hand.  In the actual event, I realised it wasn't as bad as I feared. I also found that after the initial sting the local anaesthetic was very effective and I really didn't feel a thing. Now after having had two biopsies on my lesion I feel a veteran and I feel that I have a much better idea what to expect. It may be naïve of me but I'm just going to go on thinking that I'm going to cope with the physical and emotional side of going through the actual operations just fine. (Fingers and toes crossed!) 

Thoughts about the month ahead

I feel rather in limbo. I work as a locum in blocks of six weeks or so, so I don't feel able to book in any work at the moment until I'm the right side of these operations. I don't know whether I will be able to read or drive after the surgeries. Hopefully I will but as I may not be able to wear my glasses, I can't bank on it. I will have to keep my eye dry so will be avoiding going out in the rain. I may not be able to take strenuous exercise - note to self - find that out but I certainly won't be able to exercise to the point that I get sweat anywhere near my eye. I've read on the online discussions, that people don't feel like going out at least initially on account of their scars. I'm not sure how I'll be feeling so I'm more inclined to say to friends, I hope to invite them round after my ops. but things are a bit up in the air at the moment, rather than issue firm invitations. Given skin cancer in my eyelid, I won't be able to put any sun block on after my op. while my eyelid is especially vulnerable to sun so, unless I can wear dark glasses, I'll be avoiding going out in the sun. I'll probably avoid going out in the sun anyway between 11 and 3. At least it'll be September so the sun won't be so strong. It'll be great if my eyelid reconstruction can go ahead six days after the surgery. If the results don't come back from the lab clear, I'll be having more surgery and I guess that as my consultant will then be away, I may not be having that reconstruction until the end of the month or later. That's a long time to be in limbo and have my eyelid looking an unreconstructed mess. I think I better really plan ahead and also gather things up that I can do without glasses - a bit of DIY? Light gardening? Suggestions welcome. Cloudy weather is going to be my friend. Also re-reading this part of my blog about how positive I feel and how I am managing my emotions might be helpful, like a pep talk/reminder or not helpful. If I can watch Netflix I am going to subscribe to that as a treat during my recovery. I've lined up a way of getting my hair washed, hopefully, thanks to a kind hairdresser who has a trainee. I know that feeling and seeing that my hair is dirty is very demoralising, including just the lack of independence of being able to wash it for myself, let alone the hygiene aspect of dirty hair touching my eye wound, so that's a big help. It'd be nice to have my sights on the end of my recovery period when I can live normally again e.g. going on holiday at the end of September and getting back to work after that. However given that that may not happen when I'm hoping, as I may have to have a third operation, I don't want to be too focussed on things going ahead on particular dates.

As my first operation approaches I'm going to be immersed in catching up on all the admin. that I need to do in case I can't read, stocking up on things in case I can't drive, cleaning my house and car thoroughly and catching up on my neglected garden. So I expect to be very busy, racing to the wire to get everything done. This in many ways, will be a good thing. 

I think that the worse time will be after my first op. when I take the eye patch off and see how scarily dreadful my eyelid looks. I think i'll have an eyelid notch. Ugh! The good news is that a very nice relative is coming to stay then anyway so that'll keep me being sociable and busy and I won't be allowed to "moulder"

Tomorrow - appointment with consultant.

I'm seeing my NHS consultant tomorrow for a consultation. I hope to learn much more about what kind of nodular BCC I have, why they think I might have some squamous cells as well, about the proposed extent of the first operation and the long term effects, about whether MOHS surgery would be a much better option and if so how this could be arranged and when and if he'd still do my eyelid reconstruction, about timing and how to arrange it if I go down this route etc. So nice and supportive that my kind friend is coming with me. In a way, if the Consultant says that MOHS surgery won't be any better for me, it'll be a relief as I won't have to scuttle around trying to get consultation appointments and set it up. I'll know where I stand. I've been planning to send emails to people I'm meant to be doing things for in September, to let them know what is happening, after this consultation. We'll see what tomorrow brings. Wish me luck.