Wassail to you

To be truly honest with you I have been a bit apprehensive about New Year’s Eve this year. I knew I felt uneasy about it but I couldn’t quite put my finger on why exactly. Now obviously it was probably something to do with cancer. Almost my entire existence now has something to do with cancer. What though, I wasn’t quite sure. I have spent today mainly lounging about and being looked after by my lovely wife who made me a smoothie and a soft boiled egg; it’s important not to underestimate the joy that can be found in a perfectly cooked soft boiled egg. Then my friend Janet came over. It’s her birthday tomorrow so we made plans for that and she told us all about her Christmas.

Janet is the jolly witch. She is almost always positive and is usually practising some kind of approach or technique or some such that adds to general health and well being. Today Janet told us about the 4 immeasurables. I’m loving ’em already.

The 4 immeasurables are love, compassion, equanimity and joy. It’s a Buddhist thing and basically is about wanting others to be happy, being compassionate to others, seeing things from other people’s perspectives and not judging them and celebrating the joys of others. They are immeasurables because they can be practiced infinitely. There is no limit to how much you can love someone or be compassionate, patient or joyful. Sometimes these things are not easy but they can always be done, we just have to choose to. The ‘choosing to’ brings me back to my apprehension over New Year’s Eve.

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At first I thought that I was worried that being wished a Happy New Year would be a futile and hollow experience. How can I possibly have a happy new year? I will be spending the first half of it having chemotherapy and the rest undergoing and recovering from surgery, radiation therapy, possibly more chemo. What is certain is that there will be no certainty. Not this year. Most likely not for anymore of my years. Certainty is a privilege of the healthy and even then it isn’t really that certain, you just don’t know that it’s not.

When we wish each other a happy new year tonight the truth is that is exactly what we do…we wish. It’s blind faith and hope that anyone of us will make it through the year without injury, illness or tragedy. Chances are there will be a little bit of that for all of us in some way. There will also be wonderful acts of love, deep joys and great achievements for all of us. The key is choosing to spot them. Choosing to celebrate all the joys and the wonders that come our way rather than focussing of the negative.

This isn’t my great revelation for today. It’s hardly a new concept. Reflecting on this however led me to understand what I was scared of tonight.

Tonight I will not be filled with dread and sadness if you wish me a happy new year. I might be a little touched by dread and sadness if you don’t. My greatest New Year’s Eve fear is that out of sensitivity, sympathy or just not wanting to put your foot in it you won’t wish me a happy new year at all. That instead you’ll smile sadly and hug me and tell me that you’re rooting for me. That instead you’ll tell me that I can beat this and that you’re there whenever I need you. Of course these sentiments are lovely and well meaning and they come from a place of love and that is wonderful. I do truly appreciate them.

I still want to be wished a happy new year though. Despite all the potential side effects and the pain and the possibility of treatment not being as effective as we hope, there just has to be, there absolutely will be, some really really good stuff in 2014 too.

Cancer is a thieving little bastard that steals your confidence, your time and your sense of self. I am buggered if I am going to let the blighter steal all my joys as well. You can’t have it cancer, I am going to find all the joys there are to find in 2014. Every one of them. And as we know, joy can be immeasurable as long as we choose it to be.

“Love and joy come to you and to you a wassail too

God bless you and send you a Happy New Year”

Christmas with cancer

When it comes to hosting Christmas we usually take it in turns between my partner’s parents and us, with my parents visiting from up North every other year. This year was an our friends from the North year so due to be at our house. I had been planning it pretty much since January 2013 and had ordered a fantastic Christmas box from my friends who run a farm in Worcestershire.

When I told my mother in law about my cancer diagnosis she immediately offered to host Christmas. Obviously this was a lovely offer but I declined. When it comes to Christmas I am fiercely enthusiastic and not a little controlling. I was determined to host Christmas, cancer or no and my partner, my daughter and my mum were all here to help. I was completely confident that we could pull it off.

I am a complete control freak and usually insist on having everything made from scratch and just so. I missed stir up Sunday though as I had just had my diagnosis and was generally a bit wobbly so no home made pudding this year and whilst I think I compromised quite a bit on the home made front I am told that most folk buy the Christmas pudding and the mince pies and the bread sauce ready made anyway. I tried to buy ready made cranberry sauce but I couldn’t bring myself to do it. I am a snob. I know. I also insisted on the table centre I had been planning all year. It was quite an undertaking but I got my partner to cut down the branches and my dad to go out and collect a bucket full of shells from the beach so I didn’t have to do all the heavy lifting.

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The upshot of all this is that I ended up working pretty hard over Christmas but having said that Christmas-wise I have been pretty lucky. Many of the women I have met online who, like me, are starting chemo in January are also recovering from surgery. I haven’t had to cope with that yet so my Christmas was just dealing with a few sore swollen lymph nodes and the psychology of cancer.

Christmas Eve is usually chaotic. I spend the whole day preparing food, baking, decorating. This year was no different. Occasionally I remembered that I have cancer and thought I should probably be taking it easy but apart from a bit of pain in my lymph nodes I was fine. Then it struck me. I was rearranging the dining room, getting the room ready for Christmas Day lunch and I realised that, as my cancer was in all likelihood misdiagnosed in 2011, then to all extents and purposes I have already organised our civil partnership ceremony and receptions, 2 Easters, my 40th birthday camp, a Christmas and 2 teenage birthday parties whilst having cancer. I just didn’t know it. Why therefore should this year be any different? I haven’t started treatment yet so no chemo side effects or surgery scars or healing. In fact if I hadn’t had a biopsy on my lymph nodes I’d probably be feeling perfectly normal.

Most of the time it is sickening to think that I had been wandering around with cancer for years without the first idea. The silver lining is that for all that time I was fine. I have no significant pain and I don’t feel ill but knowing you have cancer changes things. This Christmas I realised that it doesn’t have to. At least not all of the time.  I realised that whilst I am well enough and capable I will put all the usual vigour and effort into the things I love. I created a huge table centre; dinner had 4 courses and was a triumph; I did not stint on the port. I had a fantastic Christmas.

Next up, New Year’s Eve.

She’ll be wearing silk pyjamas

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So just a quick update on the all I want for Christmas situation. A resounding success. Chemo starts 8th Jan and I got the most exquisite pair of Alice Temperley designed silk pyjamas.

So chemo is in the bag. It all seems terribly real now. Deep breath.

Be careful what you wish for and all that! Hope you’ve all had a lovely day and wishes come true.

Who am I?

I was signed off from work this week. I had hoped that I might be able to work through my chemotherapy. My employer had agreed disability leave for the treatments and then if I was ill I could take a few days off sick as and when I needed them. Sounded doable to me! Then I met with the oncologist. I asked about work and they said that if I worked in a small office with a few people and could get there without using public transport then that would be fine.  During chemo I will have next to no immune system. Picking up a bit of a sniffle could be life threatening so other folk en mass, especially children, are a no go zone.

Unfortunately, unless I am working from home, which I can only do occasionally, I work in a building with 2000 other people. It’s also a public building so anyone and everyone could pass through those doors carrying with them all sorts of nasties. Ok then. Sick leave it is. I have a couple of weeks holiday first so technically I am not sick yet, but I will be. It seems ludicrous to be able to say ‘I am ok at the moment but soon I will be off sick’.

It feels so completely alien to me. Don’t get me wrong, I have been off work sick before. I enjoy my work but I’m not a workaholic. Well OK, so maybe I have already answered 3 emails today even though I am technically not working but I’m not a workaholic. I did my back in in August and had a week off then, so there.

This is different though.

Once you add up the 18 weeks of chemo, 4-6 weeks of recovery before surgery, surgery and then recovery from that and then possibly radiotherapy, well; we’re looking at around 8 months.

8 months.

When I left the building this week, I cried. I stood in the lift, descended 12 floors and cried. I am not a sentimental person. I didn’t cry because I will miss my colleagues or because I will miss my work. I will miss both those things but that’s not why I cried. I cried because leaving work this week makes me different. I am not the same me anymore. My work is important to me and to a certain extent my work defines me. I am so lucky in that I am able to do a job that I believe in. I work in local government not because of the pension but because I believe in local government. I work with communities because I believe in local communities being able to influence and shape their environments and services.

How does a person who has defined them self by what they do for over a decade go home and take it easy for 8 months? They don’t. They get a new job. My new job is tackling my cancer.

This is a great way to look at it. I will plan and execute tasks. I will probably engage my entire family in some form of joint solution focused thinking exercise. We’ll use the white board and the flip chart. There will be diagrams and some kind of matrix. There might even be a spreadsheet. I feel better just thinking about it.

The downside might be, and here’s the crux to those tears, if my new job is tackling my cancer and I define myself by my job…well, there’s no getting away from it now is there? I am a person who is sick. It doesn’t sit well with me. There’s a whole host of stuff to unpack there. I’ll leave that for another time; I have a chemo project plan and critical path analysis to prepare.

You were always on my mind

Invasive. That’s what my cancer is apparently. It means that rather than staying in the tissue where it began it can break out of that tissue and grow into other types of tissue. It also means that it can go roaming around my system looking for new places to grow (those weirdy sentinels again). I only mention it because, whilst I’ve been worrying about where else it might be going and I’ve been pumped with radioactive dye and scanned in various machines in order to see if it has indeed gone roaming about, I hadn’t noticed that I have a severe case of secondary breast cancer of the mind.

Once you have a cancer diagnosis, I suspect whatever kind of cancer diagnosis, then regardless of where, how aggressive, the size of the tumour or tumours or what stage it is at, it will instantly and almost completely consume your thinking. Cancer is just so bloody rude. It barges in, takes up residence in your thoughts and then just sits in the armchair with its feet up sticking its twopenneth into everything.
For the most part having cancer is about stopping the bloody thing butting in all the time. It sits in there adding “but you have cancer” or “what if you die?” or “how will you manage that if you’re ill from chemotherapy?” into every plan, every conversation.

For me, at least for now, it is a huge effort to stop thinking about it for any significant length of time. I hate the way it does that. The way it colours everything with itself. I am trying to own it. I am trying to be so open and upfront about it that the power it gains from being whispered about and feared is diminished. I don’t regret this. I have had some wonderful conversations and folk have told me how valuable they have found the chance to talk about something so infrequently discussed openly. The downside of course if that I am forever talking about bloody cancer.
Not talking about cancer doesn’t really help though. It’s still constantly at the front of my mind. Cancer invades almost every waking thought and most of my sleeping thoughts too. Have you ever had that awful experience when you wake in the middle of the night with some kind of night terror and then realise, with a huge sigh of relief, that it was all a terrible dream? I wake in the middle of the night and then realise, with horror, that it is all true.
No amount of chemotherapy or surgery can tackle secondary breast cancer of the mind. That is going to need quite a different regimen.

All I want for Christmas…

is chemotherapy. I never thought I’d say that but there you have it. This year I am ALL about the chemo.

So I probably need to back up a bit! I have breast cancer. It’s a bugger. It’s stage 3 but I’m not sure which stage 3. Basically what I do know is that I have this 6cm tumour in my breast and a hunk of cancerous tissue in at least one of my axillary lymph nodes. These are little things in your armpit that basically act like a pond pump and filter and catch all sorts of debris and stuff that floats about your insides. They caught my cancer. They also seem to have done a pretty good job of holding onto it too as as far as we can tell there isn’t any cancer anywhere else.
How on Earth did I wander around quite happily with more than 2 inches of cancer stuck in my breast and not notice I hear you ask? Well, good question. I did notice. I noticed 3 years ago when it was just a little blip of a thing and I dutifully went off and saw my doctor. She sent me off to the Breast Care Unit and they squashed my boobs into a machine and prodded and squeezed them and ultrasounded them and all the other things they are meant to do when a person turns up with a lump in their breast. Except do a biopsy. No one did a biopsy.
“What you have there is a cyst and some dense breast tissue.” they said.
“You calling my breasts dense?” I said.
“Yep” they said. “Nothing to worry about. All fine. You just have lumpy dense breasts. The cyst might change size and shape but it’s nothing to worry about” they said.
“Great” I said.

A little while later I thought to myself, if I have dense, lumpy breasts how am I suppossed to spot something I do have to worry about? So off I went and asked the nurse at my GPs surgery and she said everything was fine and gave me a leaflet with a list of breast cancer symptoms on it.
“I don’t know if I can spot a lump. I have lumpy breasts.” I said
“It’s ok. Let us know if anything changes or you have any other symptoms” she said.

So a few weeks ago something changed. My dense lumpy right breast imploded a bit and I got what looked like cellulite on my breast.

It’s a tough one. The folk at the breast unit can’t say that the cancer wasn’t there 3 years ago but similarly they can’t say that it was. No one knows. We can’t go backwards. To paraphrase an old Chinese proverb “The best time to do a biopsy was 3 years ago. The second best time to do a biopsy is now”. They did a biopsy. We can’t go backwards so we go forwards.

After the first diagnosis it was all so quick. Diagnosis Thursday, bone scan Friday, CT scan Monday. Thank the Lord that, as far as we can tell the little blighters or, as my consultant surgeon calls my tumours ‘the mischievous fellows’ don’t seem to have gone anywhere other than the lymph. They are sitting in my lymph nodes though and I am not sure if they are in my blood but imagine they might well be.

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Now, after all that, I wait. I have to wait to see the oncologist on the 17th December. I will have chemo prior to surgery. This is to shrink the tumours in order to get ‘good margins’ (there will be another post about the vocabulary of breast cancer. I can feel it brewing). I hope they get me started quickly. Each day that I am not having chemo I am scared that the little blighter might be sending its sentinels off into my system looking for a place to hook on. Remember those nasty little bug like things in The Matrix that scour the tunnels looking for unplugged humans? I reckon they look like that!
So, that’s why all I want for Christmas is chemotherapy.
And some pyjamas.
But then I always want pyjamas.