Narnia is in my en-suite

I am so glad I am in the habit of keeping a diary of appointments etc. Whenever I sit down to write, the first thing I have to do is go back and look to see what I’ve been doing over the last few weeks. Otherwise it would just be a blog about what I have done in the last few hours and even that might be shaky. It’s a week with few appointments – just 4 by my count. It starts off with a visit to my local GP to ask about a second opinion from another oncologist. For some reason, I feel a little bad about this, even though it is obviously vital I have the right person looking after me. The more I think about Virgil, the more I know I wanted him to be the right person. My previous oncologist was already thinking ahead when she heard of clinical trials and keeping me in mind for things whereas I feel a little like something on a conveyor belt with him. See patient – tick! Arrange treatment – tick! See patient again in 3 months – tick! There is nothing in between. Not once does he check my lungs to hear how they are performing. It’s just not good enough. So my GP who seems genuinely nice agrees immediately to refer me and knows of the oncologist I am asking for. He thinks it’s perfectly reasonable, too, which helps. We then have to rush home in time for a visit from the community nurse, Wendy. She is also very nice and takes lots of notes and is very keen to help in any way she can. I say I don’t think I need her services at present but it’s good to know there are people just a phone call away who know about my situation and are happy to offer advice or come out to see me. And, surprisingly, it’s a 7 days a week service which I am very impressed by. She offers at one point to check my pressure points – areas where I may develop sores from lying or sitting in one position for too long. Obviously she just wants to see my bum. I deny her this treat but tease her with “maybe another time”. Honestly, the lengths people go to.

Tuesday is my birthday and we start with a verse of Happy Birthday sung by Mr Mason snr and, for once, he doesn’t do it in a silly way and for some reason I am very touched. I get a lovely cameo brooch/pendant from Mr and Mrs Safaie, a ring from Mr Mason and some incredibly luminous orchids from Mr Mason jnr. The card with it reads “Mother, Happy Birthday, Son”. As ever, he is economical with words. I also have a surprising present of money from my Dad. I can’t remember the last time I received a present of any kind from him so I am both startled and touched. I have an echo first thing and am miffed because the technician will not tell me my ejection fraction. Now, if I know the term ‘ejection fraction’, I probably have some understanding of what it means but she will not budge, even when I tell her it’s my birthday. Everywhere does something a little differently as I was told immediately what the result was at my previous hospital. I am trying very hard not to keep saying “When I was in London” or “at my previous GP/hospital” as I imagine it is very galling and I don’t want to come over as a snotty Southerner. After this, we head off to some Antique shops at Hemswell Cliff and browse around to our heart’s content. The day is stormy and cool, perfect for leaving the dogs in the boot together. They are starting to settle in a little more although Archie can be a bit of a bully and Lark is wary of him at times. She is sensible, though, and he is not a mean dog so they will be fine together. Mr Mason thinks she has settled in so well he decides not to wake her to put her in her crate overnight. On coming downstairs, we discover she has removed the bottom 12″ of our vertical blinds on one side of the sitting room window, presumably so she can see out better.IMG_20150521_102502095_HDR

On our way home, we see the Red Arrows have been alerted to my birthday and are doing an impressive display with 2 teams. I try to capture some of it on my phone through the car windscreen but the photos don’t come out well, as you can see. Still, it is the thought that counts. We drive home listening to the bumper CD of Novelty Songs given to us by Mr Neary. It’s a good day.

IMG_20150519_143352067IMG_20150519_113652217 IMG_20150519_113726525 IMG_20150520_134356309_HDR

And so, finally, to Narnia. For some reason, the psychotic cat has always had a thing about bathrooms. I remember years ago a friend telling me that one of her 15 cats, Florence, used to dash into the bathroom the moment the door was open to do a wee. I thought it was hilarious at the time but think it less amusing when the psychotic cat shows similar tendencies. Since moving, as you know, she has had something of a personality transplant and has eschewed the use of a tray but has gone freestyle, using the garden like a normal cat. But she still has not shaken her love of bathrooms. Our main bathroom is enormous with a double shower and huge rolltop bath and she quite likes it but not as much as the en-suite. If I get up in the night, she jumps off the bed to accompany me, desperate to get in there and then, once there, she looks a little disappointed and can’t wait to get out again. But she does this repeatedly. Whatever she expects to be on the other side of the door just isn’t and she is either an eternal optimist or forgetful. I think it’s something like Narnia and she just has to wait for the right time to come around when she will be swept off into a cat paradise, whatever that might mean to her. And her enthusiasm has started to rub off on me a little. Perhaps one day I’ll open it and Narnia really will be in my en-suite.

IMG_20150511_212738703

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 – http://www.annabelsangels.co.uk  and see what we’re up to. That’ll keep me busy.