Gangsta exams and Tangled Feet

Yesterday was a day at the Rarer Cancer Conference. I wanted to go to speak to a patient advocate about the classification of my cancer but while I was there I spied someone who represented an organisation I felt had been rude to me. Some months ago, I emailed the Independent Cancer Patient’s Voice, offering my services and experience in research to see how I could get involved. The response I got back was curt and very dismissive, informing me that I needed to be 2 years post diagnosis before I could be part of their organisation. I mentioned this to one of the organisers who suggested I give what she called ‘positive feedback’ to the woman in question. I waited, like a spider, ready to pounce. At a suitable moment, I nabbed her (she shall remain nameless). May I give you some feedback? ‘Yes’ said with a glower. I explained about the email I had sent. ‘Oh, that’s Macmillan Voices, nothing to do with us’ she said, as though I were a small stupid child. I explained that I was well aware of Macmillan Voices (which, if you mis-type it becomes Macmillan Vices, much more exciting) but that that wasn’t who I meant. I went on to say I had felt quite dismissed by the response I got. ‘Well, people have to be able to hear things which aren’t always nice’ she said, ‘so you have to be 2 years post diagnosis’. I asked whether it would not be better to let the patient decide? ‘No, we have to be sure’ she said, as though 2 years was a magical or well-researched time barrier. ‘We’re not representative, you know’. I couldn’t keep this horrible woman talking any longer. I gave up the idea of asking whether this 2 year rule was evidence based and let her go on her way. Talking to other conference members, she came up to join us, trying to monopolise the conversation by asking about the contents of the smoothies on offer and, I think, to prevent me talking about her. Little did she know I had already completed my character assessment before she joined us. Getting people involved in research is so important and sometimes so very difficult. Although she denied the organisation she was representing was in any way cliquey, I can’t help but feel it is and that it is designed to put off new members who might have new ideas and other ways of doing things. If I had to sum  her up I would say ‘self important’. Probably with a capital S and I.

So, today I go to get my heart checked out following a year of Herceptin. It can do funny things to your heart so they check it every 3 months to make sure it’s still ticking over. The weather is sunny today but the tube is playing up and it takes me an hour and a half to travel from Northfields to Hammersmith. I feel I could have walked at least half way there in that time. Jumping from one tube to another whilst ensuring I get a seat (a very Londoner thing to do), I manage to get to Hammersmith. Walking out of the station I am trapped behind a gaggle of young men who are excited and gesticulating. Unable to get past them, I tune in to their conversation. Walking on tippy toes and talking gansta, they discuss an exam and how they hilariously did lots of loud coughing in it. It’s the sort of tale which would have found sympathy from readers of The Beano but they no doubt feel they are the first students ever to have pulled such a prank. And righteously tough, innit?

Eventually I get to the hospital, find the right department and wait to be seen. Although I am so late, they will still fit me in. I have bad memories of this place, of being seen when I was receiving radiotherapy and chemotherapy together and my skin split open. With agonising deftness, the echocardiogram ultrasound had to be pressed to my skin and it was excrutiating. I think they made up the result that day. But today is a better day and my ejection fraction is 65 which, I am told, is good. Hurrah!

I sidle into Maggies and have a juice and some biscuits whilst reading my book. The tube should sort itself out before I go back. Feeling a little more energetic than I expected, I walk back to Hammersmith and decide to go shopping. In the square by the Lyric theatre, I come upon an alfresco bit of entertainment. Several women with buggies are doing formation dancing to ‘Sweet Child of Mine’ while the assembled sit in deckchairs watching. It is quite surreal but they are clearly having a fabulous time and I stand and watch, smiling. They are called Tangled Feet and very entertaining they are, too. Check them out.




The no title blog

I’m having a fibromyalgia flare up. The pain and the exhaustion seem to stem from this rather than the chemo and radiotherapy. I could easily sleep 12 hours a day and every little bit of me hurts so I’ve diagnosed myself and decided this is what it is. So what’s the remedy? Some trashy tv and very poor daytime movies have helped. I’ve developed a raging sugar craving which I’m trying hard to ignore but that’s very difficult. The whole sugar question is also an interesting one. Sugar feeds cancer, this we know. Sugar is also not good for you, particularly in larger quantities. Fruit and some vegetables obviously have sugar in them but some of my cancer chums even steer away from those. Fruit would always be my first port of call and I really enjoy it but I feel conflicted by the amount of information there is out there about diet in cancer recovery. Ooops. I start writing about Fibro and soon am back on the cancer track. There really is no getting away from it. But soon I am going to see the Physiotherapist who will provide me with some kind of exercise and stretching regime and then a visit to the Pain Clinic to see how I can control it without recourse to Amazonian quantities of drugs. Unless it’s another kind of Pain Clinic altogether and will be full of people attempting to give me pain. If that is the case, I think I may have to retaliate and try and deliver the kind of pain I feel. With my tattoo sleeve, I feel I could do it.

Monday will see me at the Rarer Cancers Conference. Apart from hearing about all sorts of stuff (I can’t imagine what), I will get to speak to an Advocate to help me talk to my Oncologist about my kind of cancer. Why would you need that? I hear you say. Well, when I was originally diagnosed with cancer, I was diagnosed with Inflammatory Breast Cancer. IBC. It’s rare and aggressive. Very aggressive. After a few doses of chemotherapy, at some point I got hold of my notes and had a little look through them. The IBC at the beginning was still there but later on, it was talked about as Invasive Ductal Cancer. IDC is a very different fish to IBC. IBC and IDC have the same pathological origin (or so I am told) but the point that worries me is that their follow up is very different. IBC cannot be seen on a mammogram and yet that is something I have already been given. Hmmm. Not good. IDC is less aggressive and can usually be seen on a mammogram. Are you following me here? So the conference has come at an amazingly good time as I should be highly educated on IBC follow up by the time I see the new Oncologist. My week is interspersed with hospital appointments (Echocardiogram, Oncologist) and groups at Maggie’s with a meeting at Southampton General thrown in for good measure. That pretty much takes up my whole week and that is the general flavour of my life at the moment. It’s ragbag and disconnected but I kind of like that. I don’t want to be back in the full-time rat race. I still dream about work. I dream about one particular line manager I had (and some of you will know who this is) who bullied me mercilessly, mostly due to the fact that she had spewed so much bullshit in order to get employed that she felt threatened by anyone who was vaguely competent. She undermined me determinedly, sabotaging my work and being defensive. It was a horrible time and the fact that I still dream about it shows how deeply ingrained it is on my psyche. So I am in no hurry to get back to that and, to be honest, still feel way off being ready for work. I know I am lucky. I know other friends who have to go back to work after cancer simply because of economics and I take my hat off to them. No doubt in their shoes I would do the same but I am grateful that I’m not in that position. And so time for bed, I think. Tomorrow I am meeting with Will who is doing the website for Annabel’s Angels and I have to write for that. If you’re unaware of AA, please take a look at the website –  and see what we’re up to. That’ll keep me busy.

Where is Spiderman when you need him?

Oh, back to the compression sleeve. I decided to take Sundays off on the grounds that I am not perfect and the sleeve is very disturbing to wear. It takes me ages to put it on and I am unable to settle the band at the top properly without help. Today is a classic example, even though I have only had the wretched thing a week. Mark has gone out early to a meeting so I have to put the sleeve on myself. I need at least 6 hands. I struggle and sweat over it. It takes me about 10 minutes to get it fully up my arm by which time I am hot and very, very cross. Then it does something which is already so familiar and depressing. The top begins to roll down. This is something I have been told categorically MUST NOT HAPPEN or I am at risk of developing a blood clot. I need braces for my compression sleeve. I feel I need to sellotape around the top to keep it flat except, of course, that would be more pressure and may lead to – and I sense you’re ahead of me here – a bloody clot.

No-one tells you the end of the story when you develop cancer. Probably because the stories end so differently and, don’t get me wrong, I’m very happy my story isn’t over yet but I didn’t understand any of the possible stages after the first wave of terror had subsided. I thought six months of treatment would sort me out. I’d lose and then regain my hair, put on a bit of weight, have surgery and radiotherapy and that would be it. But my body is left very damaged from the treatment and I hadn’t expected that. Surgery, I knew, because I’m not a bloody idiot, would leave me looking different and that was surprisingly OK. Surgery itself was vile and I still have nightmares about the drain that got stuck and took 2 nurses and a lot of morphine to pull it out. The change in my body shape was OK, too. I’m not really a vain woman so it didn’t bother me too much. I didn’t understand how the treatment would delay healing so much and how damaging and invasive radiotherapy would be. I guess you could say I had a pretty bad time last year and, don’t get me wrong, this year is going to be way better but it’s also not going to be the same as I expected. I suppose that’s true for everyone, though. Life isn’t always what you expect and has ways of tripping you up and surprising you for the better or worse, in equal measure.

So I sit here with my compression sleeve doing its own thing and I wonder if there is a kitchen implement I could use to settle the top. A spatula? Tongs? I could stop a passer by and ask. Or I could develop another 4 arms and do it myself. Sigh. Where IS Spiderman when you need him?

Bummer of a weekend

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?

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!