Cutting it fine

OK, so Virgil has crashed and burned as an oncologist in my opinion. Why? Firstly there is the suggestion that he sees me only 4 times a year. Hmmm. For someone with secondary cancer, pleural effusion and a tendency to be unstable on chemotherapy, this seems an extremely bad idea. We have maybe a total of 20 minutes talking together yet he thinks this is enough to know me and my cancer. It’s not as though cancer follows one path (and, pardon me, but my cancer is the rare and aggressive Inflammatory Breast Cancer. You don’t see many of us around). Everyone is different and since the reocurrence, my condition has been complicated. So I say my bit about usually being seen every 3 weeks and he agrees to this. Except he doesn’t really. A week before I would be due to see him, I ring his secretary to say I have not had an appointment. That’s because none has been made. OK, this could be an admin error but he should be looking out for things like this. I know my previous oncologist would have. The first appointment I can have is on 12th June, a month since our last meeting. Since then there have been an echocardiogram, blood tests, including tumour markers, and a CT scan. Have I had a since result from any of these? No, of course not. I asked for the result of my echo at the time but was told it is not policy to tell patients “as they might not understand”. Surely if you ask for the ejection fraction it shows a least a smattering of knowledge? I phone my GP to see if he has the results. No. If the ejection fraction is too low, I will not be able to have chemotherapy on Tuesday. I phone Virgil’s secretary. Not only is it the usual “we don’t give results over the phone” (which I accept and would like to point out that she has been very helpful so far) but Virgil hasn’t even looked at the results so there is no report to send to my GP. Cutting it close, Virgil, cutting it close. So of course, there are no blood test results, no tumour marker results and no CT scan results.

For anyone who has to have regular tests, the waiting around afterwards for the results can be excrutiating. It highlights here the dissonance between Virgil and I and his apparent lack of understanding of what it is like to be a patient. Especially a patient with a terminal illness who is really, really keen on keeping everything on track so she can hang on as long as possible. It makes me very angry and upset. Yes, he’s probably studied hard somewhere and it may have been a struggle but what use is that without a rapport with your patient? The patient/doctor relationship is so important and perhaps what’s worse than his lack of empathy with me is that I don’t have any faith in him. I don’t have any faith that he would go all out to find a new treatment, research options or really look after me. I feel like something on a conveyor belt, being churned out and if I’m not the same as the person before or after then that’s my hard luck. For God’s sake, this is my life we are talking about, not a minor illness. Having optimism, faith and a positive outlook is crucial in making my time as good as it can be. It’s all about quality of life.With a lot of pain, fatigue and just the reality that secondary cancer brings, it’s normal for me to be beating off depression or just general low mood. I feel I’ve done my bit with changing work and moving home. What I really need is a specialist I can rely on, who can understand this and see me as a complicated but interesting puzzle which he or she wants to solve or at least outwit the dreaded disease for as long as possible. I just don’t have that feeling with Virgil.

So, the second opinion is on the horizon and I am really hoping this doctor will have a better attitude. If it seems he is constrained by his Health Authority (which may also be a reason for Virgil’s apparent failures), then I will be looking further afield. I have my sights set on Addenbrooke’s or Sheffield and I’d be really happy to hear any recommendations from anyone who is/has been treated at either hospital.

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.

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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.

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