I can’t get no sleep…

It’s quite hard to explain why I’m not sleeping well at the moment. I’m a GREAT sleeper. Even when I’m having hot flushes, I just throw the covers on or off, turn over and go to sleep again. However, at the moment my brain won’t switch off and that means I am awake after midnight – and on Saturday night I stayed up until 3am. Life’s a real mixture of stress and lethargy.

The good stuff is that I’ve been told I’m OK. I’ve got the all-clear. I got something like 75 Likes and many comments on Facebook when I told people that! What an ego boost. 🙂

Yes – it’s definitely a relief that my cancer is gone… but there is all kinds of other stuff I’m having to process, and it keeps coming. I feel like I’m a freight train travelling at 200 mph and I know… I just know that if I slow down or think too much that may lead to disaster. I’ve spent the last year being brave and strong and having people tell me they don’t know how I do it. Or did it.

Thing is, it was the only thing I knew how to do. Mo said it well – I fought cancer with spreadsheets. I got organised, I planned, I left nothing untracked. I was the best risk manager I could be – mostly flexible enough to cope with the unknown unknowns that cropped up, and had thought about all the opportunities and threats equally. I planned in time to rest, and time to look after myself, and even took the opportunity to have a holiday in Paris with everything cancel-able until the day before. The lecturers at BCS should be proud. 😉

This next phase in life is a lot harder.

When I knew at the beginning of this year that I was leaving my job, I knew I needed to find a new purpose – or a new set of people who might need my help… but I didn’t imagine that life would involve me in the events that it has.

First and foremost – Mum’s breast cancer came back. She had a lumpectomy and radiotherapy last time, about 6 years ago. This time, she had to have a mastectomy. For some reason when we talked about her op before she had it, I didn’t twig that there would be any more for her to deal with than an adjustment to losing a breast. Her decision not to go for reconstruction is one I completely understand, and I almost didn’t do it myself.

Mum waited until I was home from hospital to tell me the results after her op weren’t so good – and that she is about to begin a journey through the same chemotherapy that I just finished. Her doctor has also told her that with all the antibiotic-resistant germs about now, in combination with her specific health circumstances, she shouldn’t take chances with picking up germs before or during chemo. That means no visits from grandchildren with any hint of sniffles or poorly tummies. No visits from us if we’re sick, either. Mum’s mastectomy op was 2 weeks before I had mine and I visited her then – but I haven’t seen her in person since then, only on Skype – because I’ve had the cold from hell that just won’t go. It’s lasted 5 weeks. What the hell!?

At least I can give Mum the benefit of my first-hand insight into chemo. Mum knows a lot about my last year, having sat with me through chemo and having talked to me and seen me as I changed over the course of the year. I started straight away with some sage advice about hair. I found it extremely difficult to cope with seeing my hair all over my pillow as it fell out, and it was so empowering to shave my own head. I knew that she would hate that just as much.

Having spoken to me about the what and when, Mum has selected a wig that she is really happy with, then off she went to the hairdresser and had her head shaved ahead of starting her chemo. She’s already had comments about how glam her new hairdo is; people don’t know it’s a wig. Tick number one on the “big sheet of things one must do”! She’s having a tough time emotionally, as she’s had to wait what feels like a long time to start her chemo, because she had some post-op complications. This Friday, the day after my Dad’s birthday, is hopefully the first day of her treatment.

Secondly, I’ve managed to get myself immediately involved in a really interesting project. It’s too early to talk about it here, but it’s a real challenge, it’s exciting, it’s shiny and full of potential. It’s all the things that starting something new can be and so it’s taking quite a lot of my time and attention. It’s also a risk because it needs a strong and stable pair of hands to be there to nurture it for the first few months at least… and whilst I’d love that to be me, I fear it is not. I’m not long recovered from my op, I still have some appointments to go to, I have other commitments including trips already booked in… and yet this could absorb all of my and lots of other people’s free time. Still, I’d rather have this problem than nothing to do!

Thirdly at the end of January I got involved in a new charity in Bedford, called Keeping Abreast. We’re the local branch of a national charity set up to support people who have had breast cancer and are either considering or undergoing mastectomy and reconstruction. We’re a group of ladies at various stages of reconstruction ourselves, who can offer emotional support and a willingness to talk about our own experiences going through this. We also have some lovely nurses who are involved with the group.

I heard about the group from Rachel, one of my breast care nurses. I sat in a room with her and the consultant, having agreed to go ahead with my double mastectomy and reconstruction, and I must admit I was rather zoned out and on autopilot. I tend to write things down a lot when I get like that because I know I won’t remember things people say to me. I was also processing the prospect of leaving my job in the near future, and my mum also needing an op. Rachel spotted the signs that I might “need a minute” and gave me a bit of time to just sit and talk in the quiet. I think if she hadn’t I would have just gone home without saying anything, and stored up another worry to bite my lip about.

The thing is, there are loads of things that you really could do with knowing when you decide to undergo reconstruction. More than you can possibly get from a half-hour appointment. So, as well as just sit with me, Rachel told me about Keeping Abreast. It felt like it was a little late in the process for me to gain much from it, but I gained something in another way; I immediately wanted to help and get involved. Because what I’d really like to do is to keep other people from going through the same thing i.e. not having access to support during such a difficult time. (You see, whilst I perhaps didn’t appear to need any help, Rachel knew better. There are probably many other people like me out there who will battle on, of course they will, but who would really benefit from or appreciate talking to us.

Keeping Abreast Launch Meeting
Keeping Abreast Launch Meeting

So that’s why, just over 2 weeks after my own op, I was bouncing about in a church hall and covering every surface in pink crepe. I was helping the team to organise the launch event for Keeping Abreast and bullying loads of my friends and acquaintances to get involved, donating time, money, gifts for the raffle and generally being lovely. The launch was a huge success.

Not only that, but on a personal level, it was a big emotional boost. Why? Well, for what seems like the first time in many years, someone actually noticed all of my input, and I was publicly thanked for all my hard work, in front of everyone at the event. I went as pink as the crêpe paper, but I reckon it’s the best thing that’s happened in years. That’s a little bit sad I know, but it feels true at the moment!

My thank-you flowers :)
My thank-you flowers 🙂

Being in the management team of a business plus being part of the furniture, when you’re an introvert like me, it means you tend to get overlooked when the praise is being dished out. Don’t get me wrong, I’ve always had a very loyal and close set of friends among my colleagues, but it takes new people a while to get to know Alice. People who don’t know you so well can tend to take your presence for granted and don’t necessarily bother to thank you for the things they assume just “happen” due to you quietly steering things behind the scenes.

Suddenly, though, Alice wasn’t there. One minute she was at the garden party of life and then whoosh! Fell down the rabbit hole of cancer and chemo. Well – Alice is very glad to be out the other side of Wonderland, and Tweedledum and Tweedledee will be just fine without Alice.

So – now I’m ok health-wise, but no longer working full-time, I feel a bit adrift. Sometimes I have to check what day it is and that feels wrong. Life has a lot less structure than when I was working or even battling cancer. I have been so used to a routine that involves strict adherence to clock watching or diary planning, and I counted on my routines just to mentally hang on and get through to the end of my treatment.

Apparently it is extremely common for people to battle through and through and through, and then right at the end to feel weird and deflated and like all the emotion that they kept suppressed is going to catch up on them in a bad way, sometime soon. I’m beginning to feel like that. Like I’ve got a really wobbly really high wall that I’ve built, and I’m holding it up, but people keep throwing things in for me to juggle, and that wall is getting more and more wobbly… so I need to be careful not to take on too much… as is my wont.

I’ve tried to pack my schedule with things like training courses, interesting conferences, lunches, cake with friends, trips, new projects, charity work… but all the while, I’m worrying about my mum, my scars and aches and pains, my friends and their health, my old job, my new job, my charity work, trying to find a new purpose to life… 

The thing is, I’ve felt a bit down for a while, but it’s nothing serious and I’ve been energetically ignoring it as much as possible. It feels a bit like it’s something I ought not to complain about. It’s not as serious as cancer, and I’m still here so why am I complaining?! As one of my friends often says to himself; “Oh get over it”.

When someone asks me how I am,  I don’t know how to say any other answer than “OK” out loud – so I’m bottling all my feelings up and have been for a while. It’s actually quite sad how much I’ve convinced myself that nobody wants to hear about me not being strong and inspiring and completely together. Hey – it’s not like I have cancer any more, so what’s wrong with me, why aren’t I leaping about with joy constantly?! I think I need to find someone who I don’t know, that I won’t feel I’m being a burden if I unload on them. Because every so often, I just get hit with a wave of sadness for the things I’ve lost in the last few months, and it would be nice to talk to someone about that, someone who hasn’t heard half or all of it before.

Maybe I should take my own advice and meditate, rather than stay up writing blogs…

… and if I can stop myself thinking about everything for a bit, then I will get some sleep!

“Deep in the bosom of the gentle night
Is when I search for the light
Pick up my pen and start to write
I struggle, fight dark forces
In the clear moon light
Without fear… insomnia
I can’t get no sleep

I used to worry, thought I was goin’ mad in a hurry
Gettin’ stress, makin’ excess mess in darkness
No electricity, something’s all over me, greasy
Insomnia please release me and let me dream…”

Insomnia – Lyrics by Faithless