Tuesday, 16 June 2009

65. Can I still do that?

Three months ago I thought there were things that I would never do again or do them weakly, yet here I sit and ponder the obstacles I have overcome, all the small ones and the bigger ones, and I marvel. The power of the human body to heal. It's survival instinct. And on the bare face of what I chose to do to my body was my instinct to live, to survive.

Daily life loads up some new physical and mental challenges as time goes by. So the repeated question is: "Can I still do that?"

Drive? Yes, fully functioning packed with pillow for added comfy.

Sleep? Yes, despite the initial challenges of front and back wounds, I now sleep normally and sleep is the best time for your body to sort itself out pretty pain free. Good physio, without the effort.

Dress? Yes, fully but struggle with tighter tops - getting out of them can be hard work but new techniques develop and you adapt.

Gardening? Yes, gently, then medium flow, then with gusto (involving lifting, wheelbarrowing and pruning shrubs and trees - which I am not at just yet). Medium flow involves cutting the lawn, digging in by spade and trowel small plants. Just one or two at a time, anything more is considered with gusto (see above).

Loving? Yes, hugging my amazing husband, family and my stepson (who has been amazing in understanding my pain and listening to me and for gently hugging my head for the first 6 weeks). Head Hug works a treat although can mess up your hair a lot but hey, a hug is a hug!

Sport? Yes, a few days ago I remembered my mountain bike has full suspension so should be comfy over bumps. A successful short but invigorating cycle with my stepson. Lovely! Other recent sport - moor walking (not a pavement in sight!) and a spot of light paddling in the double kayak.

Shopping? Yes, carrying bags is very much a NO NO NO in the beginning but light bags and great assistance is required once you get back into things. Lifting is the problem, carrying is less stressful and just use more bags than you normally would. The staff in Tesco were amazingly helpful at the til but it takes a little explaining what you need. I just said I'd had major surgery and was not to carry heavy objects yet. They understand completely.

All good - I sometimes think this is quite nice now, do I want more surgery yet? I think I might wait a while longer, maybe even next year for tweaks and nipples. Maybe I should give myself this timeout on surgery, just wait a while longer and let my body settle down even more. I am worn out so far, it's been tough.

Emotionally, I am feeling so much better - the ups and downs you see are real, this is my life living BRCA1 positive. The self-esteem has been boosted recently, learning to overcome some old feelings and adapting to my new body. It's nearly time to put it into a dress.

Monday, 8 June 2009

64. So how am I doing 3 months on?

Great! Apart from some setbacks emotionally which I am sorting out now, great. Much greater than I imagined.

The warnings attached to having my kind of surgery are that back pain may be experienced initially and weakness in the shoulder. Now this worried me. I think anyone facing life altering surgery will be apprehensive about the future and their physical limitations, I guess I did think that I would be quite impaired for a long time. In reality, yes I am - I can't lift heavy things, hold anything weighty out in front of me for any length of time and it is only recently that I noticed holding up the phone to my ear for over 10 minutes doesn't make my shoulders ache.

The initial 3 months have seen me go from not being able to dress myself, wash my hair, sleep well, find 'comfortable', cook, drive or walk even to yesterday mowing the lawn, digging in some plants and pottering in the garden. I even attempted some Wii Fit boxing and aerobics the other day but the after effects left me feeling a little overworked and a bit pumped in the pectoral muscles. My Latissimus Dorsi muscles are stitched into place on top so they may have absorbed some of the workout and I felt very firm for a day or two - it was quite weird. Aside from that, life returns to normal pretty much. Pain is still a frequent visitor to my body but is nothing compared to Week 1 and 2!! I have odd twinges but actually, all in - things are pretty good. I have got used to the tightness in my back and my husband is helping me massage my back scars to loosen them up. I have can sleep on my front although if I was of any real size I am sure this would still not be possible comfortably. I can also sleep on my side but have recently been waking on my back with my arms up by my head on the pillow which is uncomfortable after some time. Waking up is still mildly painful but I am moving around like normal now in my sleep and I thought I would never find comfort again but I have.

I am still waiting for my tidy up surgery and nipple consultation but in the meantime, I face my emotions. Something has been haunting me lately and I cannot shake it. Self esteem is critical in recovering from such body changing surgery and nothing can prepare you for how body critical you can become in living through it. I have struggled with the loss of some breast size - it bothers me and I am bothered that it bothers me! I had a perfect hourglass shape and now I feel pear shaped, unbalanced and I cannot shake the sadness right now. I also don't feel sexy at all..where has it gone? I don't know but it will pass. I have expressed to my BCN how sad this has made me and to my doctor and I am embarking on some CBT Cognitive Behavioural Therapy to help keep things in perspective. Some people suffer depression after such surgery and it is important to keep a healthy mental state. I don't feel depressed, just a bit confused and lost with my feelings. I have spoken to many women who face the same risks as me with their genetic mutation and some have suffered depression. It's to be expected - its huge what we do, it's not just surgery - its the whole deal, the risk, family choices, telling everyone else, facing it, worrying about cancer. It's draining and on top of that you have to work, keep sane, run a house and family.. we are not superhuman..we are just human and we need everyone around us to get through.

So, in an hour I am off to my first CBT session and strangely I am looking forward to talking to someone completely unbiased to my situation about my life and my struggles with this whole malarky.

Monday, 1 June 2009

63. Did you want nipples today? Sorry..we cancelled

I am thankful for my strength of composure and character in what has been the farce of organising my tidying up surgery after my breast reconstruction op. I could have lost the plot by now otherwise. If you remember, this was brought forward by two whole weeks which left me with just one week to get mentally prepared instead of three!!

A couple of weeks ago my nipple reconstruction and tidy up date was 8th June. I organised my pre-op appointment for 3rd June and then I go away for a weekend, come back and it's 1st June. So I cancelled my pre-op and tried to arrange another in time as I literally had days to get in and get swabbed for MRSA, blood test etc. I couldn't get hold of them all day one day and then when I got through the lady who organised the appointments was away from her desk. Then when I got through they told me I could arrange it anytime, even just turn up and wait. So I called my surgeon's secretary just to advise her that there may be a problem if I couldn't get seen in time.

Please note that it is Friday..

Me: "Hi there, I'm booked for surgery on Monday and I am concerned that the appointment was moved without pre-op being arranged in time. I think I am going to have to cancel."

Sec: "Let me just check the diary."

I can hear her flicking through pages.

Sec: "..erm..we haven't got you booked in for surgery on Monday. You wanted to speak to Eric about nipple reconstruction before you had the surgery done so the appointment was rescheduled."

Me: "Right. When was I going to be told that I wasn't having surgery on Monday? I was prepared to go in at 7am! And my husband has taken the afternoon off from teaching to pick me up. Eric was going to call me as time was short so we could discuss the surgery rather than coming into hospital. He hasn't."

Sec: "No, I am so sorry. I can only apologise that he hasn't done so. He has a note to call you. He is on annual leave for 7 days."

Me: "This is the second time he has rescheduled my surgery because he is going on holiday. I am not very happy really. He's enjoying himself and I am preparing to go under the knife. I don't enjoy being messed around, this is my life!"

She apologised some more and insisted that she would be on him first thing on Monday to explain what had happened.

Me: "Sorry Sandy, I'm annoyed as you can probably understand. You said the surgery has been rescheduled, when for?"

Sec: "22nd June."

Me: "Oh that's great. That's my birthday. Anyone check my file? After what I have been through in the last six months I would like to spend my birthday doing something nice, not getting chopped up again."

I didn't raise my voice, I was just blunt. I can't believe that they can be so insensitive. I guess it's just a task to be done but me, on the other end, I have feelings and life to deal with.

On further discussion Sandy explained that the surgery method was a semi-circular cut for the nipple which is then twisted. It creates a button-like nipple. I explained that that kind of method flattens and has to be redone. I was not in for multiple surgery. I also asked her a few questions:

Why, upon breast reconstruction contemplation, was I not asked about my nipples and what I would like to do about them.
Why was I not offered a mould of them so I could consider prosthetics as an alternative to surgery?
Why have I not be talked to about the various methods of nipple reconstruction?
Why was I not offered different kinds of surgery with different surgeons who specialise?

I expressed to her that I felt I had just been pushed through the NHS machine and I had been given few options, even though Latissimus Dorsi reconstruction was the best option for me and that I was happy with the outcome, even if we had talked about implants on threat of making me smaller - which happened, yet no implants were used. I am happy that Eric did a fantastic job. I said I wanted to see some alternatives to the 'button' nipple option. Sandy said she would speak to the BCNs (breast care nurse) and see what they recommended and that she would call me back. Which she duly did and told me that she would get me referred to the Plastics team for consultation.

Why didn't this happen initially? Why didn't I go to see a plastics team to discuss ALL the surgery options for everything and then decide? Why is everything so damned complicated and irregular? I have some issues to raise with my genetic counsellor about what a person with family history of cancer needs when considering surgery. I am annoyed!

So..I wait some more. Will it ever end?