Cherryshit! Cherryshit!

I’ve been on retreat. Yes, I admit it sounds a bit nun-like but it wasn’t at all like that in reality. I have discovered that going on retreat turns me into a dormouse. Many of the wonderful talks that have been prepared for me pass me by as I sleep through them. The seats are very, very comfortable and tilt back. There are matching footrests at just the right height and we are given blankets to cover ourselves with so it’s not really a surprise to find I cannot keep my eyes awake. A doctor comes to give us a talk about nutrition and I find myself asleep within minutes. Periodically I will surface and nod encouragingly whilst hoping I am not snoring too much. I notice during one of these periods that some of my compatriots are also asleep or on the verge of so I don’t feel so bad.

We are the usual disparate group of people and form a cohesive group quite quickly. It is clear that we are not all going to be lifelong friends but some stronger bonds are forged which will last. Having no chores to do and a small amount of free time allows us to behave like school children, giggling and messing about. Some of us have smuggled in contraband and feel daring drinking coffee in plain sight. I put my KitKat wrappers in the communal bin in the refectory and hope they don’t search my cases.

On the second evening, we are having supper together and bemoaning (obviously far too loudly) the fact that we won’t be having Biodanza that evening. What Biodanza is is something of a mystery but Becky has looked it up on You Tube and it appears to involve lots of twirling, finger pointing and looking deep into each others’ eyes. We don’t think we’re up to it but say how disappointed we all are not to be taking part whilst secretly sighing with relief. Near the end of supper, we are joined by a fair haired woman who tells us we will be having Biodanza after all! We fix grins on our faces and wish we hadn’t been so clever. We are told which room to go to and duly traipse off, each daring another to not go or to run away. I am wearing sheepskin slippers and feel I cannot possibly do it justice in such attire but others tell me it will be just fine. If one is going to do it then we are all going to do it. We find the room which is large and has a piano in it. We spend time shoving each other through the door like 6 year olds, mucking about. The room is very pleasant and has large windows which reach to the floor. One is a door leading out to the garden. “Does this door open?” I ask and, before I know what is happening, I have the door opened and have stepped through it like a character in a farce, just as the Biodanza teacher arrives. I leave behind a room with several outraged faces in it, furious because they hadn’t thought of it and I am now not going to have to humiliate myself by dancing. I go to sit on a bench by the water feature and ring my husband. To be honest, I can’t see much of what is going on in the lesson except occasionally I see my friends making faces at me or bending over in an amusing way. After a while, I go up to my room and revisit my dormouse tendencies.

Over breakfast the next morning, I am castigated for escaping and given a blow by blow account of the Biodanza class which, to be fair, most people seem to have enjoyed. Apparently it involved people dancing by touching forefingers together in quite energetic ways which was tricky to manage but the slow dances they found the most embarrassing as they had to gaze lovingly into each other’s eyes. It also lasted for an hour and a quarter which made it a very long day. I do not feel I missed something essential to my being so am smug about my escape.

There are 2 stories we shared between us which define the humour of this retreat. I saw a woman on television talking to her friend about children’s birthday parties and how expensive and complicated they had become. One woman said she had so much to do, buying presents, preparing the food, filling the party bags – she was quite worn out with all the work. The second woman said to her “My children are too old for parties like this now. They just want pizza and a video. Cherryshit! Cherryshit!” I sat up. What on earth did she mean? Something yound people enjoyed which I didn’t know about? It took a few seconds to realise she was actually shouting “Cherish it! Cherish it!”….

The second relates to the Earl of Oxford who, on being presented to Queen Elizabeth, bowed and farted at the same time. He was so humiliated by this that he stayed away from court for many years. On his return, he bowed again to the Queen who said to him “Ah, my Lord Oxford! I had quite forgotten the fart”. Humans don’t change so very much 🙂

Here comes the sun

I am becoming new and improved every day. Every day, in every way I am getting better and better. Or something. Today was the acquisition of the much awaited compression sleeve and gauntlet. Mine is a snazzy all-in-one, caramel in colour, naturally, and very tight. It runs the entire length of my arm, from just beneath my arm pit stopping around the knuckles on my left hand. Hand-washing is very difficult. If I ‘get on with’ this one, I can have another one. I can wash it gently but mustn’t leave it to dry on a radiator. After it was fitted, I whipped my tattoo sleeve out of i’s bag and began to put it on. The man who was helping me – I don’t know his exact title – was surprised. “I’ve never seen one of those before” he said. I explained I didn’t want to be controlled by my sleeve but meant to have some fun with it as I have to wear it. He nodded approvingly.

This afternoon was the formation of the new singing group at Maggie’s. It’s only for 4 weeks but I thought it would be fun. An amazing amount of people I had never seen before came and we sat in an awkward L-shaped room while a very nice man put us through our paces. We did breathing exercises, panting. yawning, tapping and clapping. Eventually we separated ourselves into groups – soprano, alto, tenor and men. Our choir master has decided we should sing ‘Here Comes the Sun’ which is fine by me. The problem is, some ladies in the group can’t understand that you should only sing your own part, not the part of every group. It leads to endless confusion when, say, the tenors are singing their part and women from the soprano and alto sections are singing along. I clearly need to be more tolerant and possibly buy some earplugs.

Waiting in the car park for Mark to arrive, a woman I have never met before accosts me. ‘Wasn’t it fun?’ she asks. We discuss what we liked about the afternoon. ‘As soon I saw you come in, I thought “she’ll be a right laugh”‘ she tells me. ‘You came in with your tattoo, chatting with people and I thought you looked amazing’. How fascinating to see onesself through the eyes of others. We discuss our various cancers. Her tumour was 11mm and she had had it removed. She is due to start chemotherapy on Friday. I tell her I had chemotherapy before surgery. ‘Was that to shrink it?’ she asks. I tell her yes. ‘Did it work?’. I tell her it shrunk to 8cm. She looks aghast. ‘8cm? Mine was only 11mm!’ I remind her it’s not competetive cancer. Cancer is cancer is cancer. She tells me her chemotherapy is made from the bark of a tree. With horrible familiarity I know exactly which drug she will be having and, skipping the horrible side-effects, I tell her it will stop her cancer in its tracks. Mark arrives and we part.

Coming home I get to remove my external accoutrements. My prosthesis, my new compression sleeve. The relief of discarding the improvements is immense. The joy of sitting in pyjamas mis-shapen and puffy-armed is huge. I don’t yearn to go to restaurants, clubs, gigs, the cinema or have dinner with friends. I long for the sofa at the end of the day, pyjamas and sheepskin slippers.

How it all began…

When I began writing this blog, I went back to the very beginning of my story and started to write in detail about what happened. I think I should probably have started this blog a year ago, when I was first diagnosed with Inflammatory Breast Cancer. In case you have never heard of it, IBC is fairly rare (around 2% of women with breast cancer have this type) and aggressive. It moves fast and is not detected by a lump but by changes in the breast which can be diagnosed as an infection or insect bite.

But it’s too late to go all that way back. So much has happened in the last year and no doubt bits of the story will emerge. You’ll have to catch me up. I’ve met some fabulous people on the way and some really annoying ones. I’ve seen lovely healthcare professionals and some I would not recommend to my worst enemy. People I didn’t expect to step up did in a spectacular way and other friends I thought would be solidly behind me disappeared like mist.

It’s a strange old disease, cancer. It’s all consuming and a bit like having the most horrible full-time job in the world but its also great to see doctors and nurses working at their best and to see the bravery and humour of other patients.

I don’t have any particular aims with this blog other than to catalogue my thoughts and activities for my own amusement and if anyone else wants to read it, then that’s all good. I have a Facebook blog which has been running since the very beginning but think it’s time to move into something more general. Everyone is tired of the cancer. I’m tired of it and yet don’t feel up to getting back to work yet. Too much of me hurts.

But my brain is working, albeit with a shocking memory loss. Chemotherapy does awful things to your brain and I can’t remember so many things, including people’s names and the names of ordinary household things. It will all come back, or so I’m told.

Do I feel miserable and depressed about the cancer? No, not at all. It’s a bugger, that’s for sure, but I’m optimistic by nature and know more than ever that life is for living so I’m going to do just that. In my own way.

Welcome to my world!