Tag Archives: ibc

Bummer of a weekend

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One thing about chemotherapy is that it does its job and more. Not just affecting the pesky cancerous bits, it also wrecks other bodily systems and, in my doctors’ opinions, it has wrecked my guts. That and the mega amounts of other drugs I have been taking (all prescribed, I hasten to add). After a particularly memorable 60th birthday for Mark during which he listened as a strange doctor stuck his finger up his wife’s bottom (to clarify – the doctor was unknown to us, therefore strange; the doctor did not stick his finger up his own wife’s bottom, or not in our presence, anyway), it was decided that I should have a colonoscopy to ensure nothing untoward was lurking.

This weekend is the one for what they call ‘The Prep’. I received a lot of information from the rather sullen young man who made my appointment at CX. It can’t be much fun handing out information on this stuff to patients, I suppose, but he could have made an effort. The information was thorough if quite alarming and told me what to do beforehand as well as what to expect during the procedure.

Funnily enough, I’m not that bothered by the procedure.  I know I’ll have mild sedation so hope that will be enough to take my mind off people interfering with my nether regions. No, it’s the preparation that’s causing me problems. Today and until midday tomorrow, I have to exist on a diet of primarily white food. White bread, potatoes without skins, white fish, skinless chicken and butter. The only relief colourwise are the eggs I am allowed. It’s amazing how much you want a biscuit when you can’t have one. Or a cake. Or something else that isn’t on the white ‘low residue’ diet. A piece of fruit, for God’s sake. Forbidden. Sigh.

I know it’s only for 48 hours or so but it’s very frustrating. Slightly more worrying are the preparations for tomorrow. Any direction which begins ‘take 10 senna tablets’ has to be a bit concerning. This is followed by 2 more extra-strong laxative preparations which should be consumed within the next 5 hours. Advice suggests not to wander far from a toilet. No shit! Sorry, couldn’t resist that one. So tomorrow will see me hanging around the house, groaning and rushing to the loo every five minutes. Advice on the internet from those who have been through the procedure before is to buy some special toilet paper – nothing scratchy – and some wipes. After that, I cannot bear to go into further details so will leave it all to your fevered imaginations.

Suffice to say it has put rather a damper on my weekend. Yet another indignity to be endured. How we get used to all the prodding and probing, the disrobing, the dignity shorts, the poisons, the nuclear injections, the zapping of radiotherapy, the scalpel. Surely at the end I will emerge upgraded, a newer model of the previous me. I wonder if it will be an improvement?

Metaphorical shoes

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Getting ready to go to CX today for a scan of my right armpit (makes a girl fee so good) I vacillated between 2 pairs of shoes to wear. I wanted red. I am not a girly-girl but I like my clothes, bags and shoes. Nothing high, mind you. So the choice was a red suede pair of desert boots or a red suede pair of brogues. The desert boots are cool with good grippy soles but the brogues are more stylish and I hadn’t worn them in ages. I tried them on. And then I thought ‘Oh, they are a bit of a metaphor for cancer and me’.

I like the look of them. They are fabulous and have a nice narrowed square toe and they look good with what I’m wearing. But they have leather soles inside and out and that makes them a bit slippy and I’m a champion at falling over (or toppling, as my son calls it). So most of the time I feel like a red suede brogue – feeling good, my life neat and organised but underneath, it’s all a bit slippy and I could come crashing down at any moment. If the cancer returns then I pray for a recurrence rather than a secondary because at least that’s treatable and beatable. It’s this not knowing that is always lurking beneath the surface, waiting to topple me, to see me come crashing down. But I have to wear the red brogues, I have to be out there, risking humiliation and real-world toppling because otherwise I would not be me. It’s not the deepest metaphor in the world, I grant you, but it came to me this morning so I thought I would include it.

Today sees me off to CX, as we know, but first I’ll drop into Maggie’s and see who is there and have a chat and a cup of coffee. I like the warmth of the atmosphere and the way I can sit and be allowed to without someone bothering me. It’s always up to me if I want to participate or not. After the scan which is looking at a painful bit under my right arm – the side I still have a breast attached – I’ll go back to Maggie’s and meet my friend Suzannah for a chat and a bit of reassurance.

I’m feeling a bit all over the place today. A year on from my initial diagnosis and hospital still figures large in my life and uncertainty goes with it. But I will brave it in my red brogues and hope I don’t come crashing down on the Hammersmith roundabout or on one of the hospital’s shiny floors. Normal service with full humour will be restored tomorrow.

How it all began…

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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!