Captain Stinkypants

In an effort to make our long-awaited holiday as relaxing as possible,  I decide to book a cab to take us to the airport. There is a huge palaver when one company agrees the fare, I pay over the phone with my card and they then decide they have quoted me the wrong fare. “It was a trainee” the woman explains, sounding peeved. I explain this does not look very professional and may have a negative impact on how I view their company but she is cheerfully unrepentant. I then use the same cab website to book the same trip but with another company. I am offered another good fare online and go to pay but the site rejects my card. It also rejects a credit card. Almost immediately I receive an automated call from the bank who are checking whether my card has been used fraudulently or not. I answer all the questions successfully and it tells me to go back to the website and I will be able to pay. I input all the information again only for my card to be rejected again.

 I phone the bank to ask what is going on and they tell me it may take a while for things to filter through the system but that I should probably phone the cab company and book it that way. While I am talking to the bank, the credit card company phones to go through fraud procedures with them. I tell them to call back later. I have a cab to book. I phone the cab company I have chosen from the web and ask to book the trip. They do not take card payments. I explain what has happened on the website and the helpful man tells me that I will almost certainly be barred from making card payments with cab companies the length and breadth of the country as it will be flagged up with the cab company police (or something similar). At this point, I decide I will book my cab another day.

On the day we fly, the cab arrives on time with a very pleasant driver. On the way to the airport, he tells us he is exhausted and has been driving for over 10 hours. This doesn’t inspire confidence but we arrive safe and sound. At the airport, we play the ‘wonder who is going where we’re going?’ game. The flight is quite busy but we’re given seats together. Behind us is a small child with his parents. Dubbed ‘Captain Stinkypants’ by me, he manages to emit a smell like an over-ripe piece of Stilton. I apologise if any of you privately use this epithet to describe yourself or one of your loved ones but this boy is an outright winner. He has great skills in seepage, that’s all I am going to say.

The woman in front of me appears to have some kind of fit whilst watched over anxiously by her partner. I realise she is frightened of flying when she starts shaking and sobbing uncontrollably. I feel sorry for her and watch as they try to quell her fears by consuming large amounts of wine. By the time we land, she is unconscious and her partner carefully folds her tray table away so as not to wake her. Alas, landing wakes her whereupon she unleashes a torrent of abuse on him, shouting and berating him so I feel much less sorry for her.

We are whisked off the plane, put onto a bus and then passed through passport control at lightning speed without so much as a cursory glance at our passports. Given that I look like a female member of a Russian mafia gang in my passport (a photograph taken when I had very little hair), I am surprised I am not hauled off for intimate inspection just on the basis of it. Again, we size up our companions to see who is going to the same hotel as us. Captain Stinkypants? No, he is not on the same bus which, given the heat of the night is something of a relief. As it happens, none of our travelling companions are headed for the same hotel. We are on our own.

Naughty photos

What a strange feeling it is. Life goes on in the midst of death and it’s an unknown combination to try to juggle. I don’t know what we do. I don’t know about putting announcements in the paper or ordering flowers for the funeral. These are things done by the older generation and now I’m unwillingly becoming the older generation, I feel ill-equipped to deal with these things. Ask me about finding something online, a recipe, a book, buying a mattress and I’m your woman. All the rest is a foreign land to all of us. Me and my siblings. I speak to a florist who looks like she might be able to produce something nice for the funeral, judging by her website. The wreath I think may do the job looks good and as I start to give her the details, she says “Oh, there is a £6.99 delivery charge”. I said I thought the funeral directors, who are only round the corner, would come and collect them. “There’s still a delivery charge. We only do delivery”. What, even if someone comes in to collect them? “Yes, we only do delivery.” I feel that not only am I in uncharted waters but that I am entering a slightly surreal world. I decline her wreath with all of its stupid delivery charges and I’m back to the internet to search for something we like.

So the rest of life indeed continues with an invitation to speak at Macmillan’s Question Time at the House of Commons. I do not worry about it, I don’t even really think about it until I get the text from the taxi driver. The wait to get into the Commons is very short and I get straight through security with a slight hitch as they want to examine my pedometer. “Are you getting enough steps in?” one of the policemen asks. I explain we’re supposed to take 10,000 steps each day to keep healthy. He pulls a face. “Sounds an awful lot to me” but then if you stand on security at the Commons each day, I doubt if there is much walking going on. I am planning on meeting 2 friends at the event but somehow I am taken on a route which by-passes where they are waiting for me. While I sip coffee and nibble on Commons’ biscuits (very good, by the way), they sit in another room and it is only when I phone that we realise I am in a good place and they are missing out on the refreshments. They are soon with me, however, and we find seats, sip coffee and have a quick catch up before the session gets going.

I am asking a question about care for cancer patients in the light of the Francis report and the RCN saying we will be short of 100,000 nurses by 2020. Before I ask my question I respond to a comment made by David Dimbleby about psychological care. When I asked my (then) breast care nurse (since fired – by me) if I could see one of the oncology psychologists, she asked “Why?” I am pleased to see his jaw drop. One of the panel members dislikes my question and starts banging on about compassion and that’s what it’s all about. It’s not and that’s not what my question is about. I’m talking about the chemotherapy nurses who work their socks off and yet are always understaffed. Giving treatment that requires a plastic surgeon to be on standby in case any of it gets into the flesh or onto the skin and ensuring each toxin is given in the right dosage to the right person at the right time. Unable to get the right level of cover as they do  their work, they smile, miss breaks and remember people from one appointment to the next, no matter how many weeks are in between. I’m talking about the struggle to see a lymphoedema  nurse to combat increasing lymphoedema and how I find out this service is provided by Macmillan as is my new breast care nurse and my psychologist. So if funds are reduced further when a large part of care is already being taken up by the charity sector, then what? It’s a depressing picture but the debate was good. On the way out, someone suggests we take photos of ourselves in the lobby. There are no signs saying DON’T so we do! For some reason, one of our party who shall remain anonymous is obsessed with us becoming couple of the year on the cover of Viva! Whilst we snuggle up to each other in a variety of loving poses, we hear a police woman shout “No photographs!” so we stop and I realise it’s the second time this year I have been caught taking photos in places I shouldn’t. We are not taken to the Tower, at any rate, nor does Dave come down and give us a personal admonition. So, here for the very first time… that front page!



Half an orphan

This week has proved to be a momentous one. On Monday, I hear my mother is not well and is in hospital. She has spent less than twelve hours in a respite home when they call an ambulance for her as she is bringing up what looks like coffee grounds. This, I know, is a sign she is vomiting blood. On arrival at hospital, she has what look like grazes on her nose and her glasses are missing. It seems logical that she has had a fall and probably broken her glasses but the respite home staunchly denies this. As the week progresses, it seems less important yet it is something we touch on from time to time as we sit by her hospital bed.

By the time we arrive on Tuesday, she is not conscious although she can squeeze my hand when I hold it. She is breathing noisily and is positioned so her mouth lies wide open and it is obviously dry and uncomfortable as she frowns and moves her hand towards her mouth repeatedly. At this point, all treatment has been withdrawn and she will only receive pain relief and a swab to provide moisture in her mouth. My niece, K, has worked with the elderly before and is able to confidently do a lot of things I am unsure of.

For 3 days, on and off, we sit by my mother’s hospital bed, holding her hand, stroking her face and talking to her. K stays overnight with her so she is not alone at any point. Driving the 70 odd miles each way every day, stopping en-route to drop Dog off with Mr Mason’s parents, is exhausting. I squeeze a meeting in on Wednesday morning along with my usual group at Maggie’s but it feels as though our lives are put on hold for the week. No washing or cleaning gets done. Usual chores are left and the house goes to rack and ruin. My sleep, which is always variable, becomes worse and I feel beyond exhausted with a cluster of bad fibromyalgia headaches.

Master Mason comes with us on Wednesday afternoon and I am touched to see him gently hold his grandmother’s hand. On Thursday, we travel down earlier and spend just a couple of hours at the hospital before going on to see my father. As we are talking with him, the phone rings and it is K, telling him he should come back to the hospital. My mother’s breathing has been steadily declining but K thinks it has changed in a meaningful way so we take my father back to the hospital. We stay for another hour but the traffic has been challenging for the last two days and we don’t want another late night. K also reassures us the end will be soon but not within the next hour or so. We collect Dog and then drive home, arriving at 7pm. As I am literally on the doorstep, my brother phones to tell me my mother has died peacefully. Her breathing slowed and finally stopped. She had company all the way through her journey and had, I think, a good end.

By Thursday evening I am beyond tired and actually sleep well, heavily and solidly throughout the night. On Friday, I sit and try to catch up with work admin while resting. The surgeon has referred me for a body scan and has marked the appointment urgent. It arrives in the post and is scheduled for when we are taking the first holiday we have had since my diagnosis. The past 18 months have been an incredibly stressful time, mentally and physically. I feel people don’t understand because I know I didn’t understand before I had cancer. I didn’t realise how the effects of cancer keep going, long after the disease is invisible and, we hope, banished. It was only this time last year that it seemed death might be on the cards for me.

On Saturday morning, after a night of sleeplessness and finally dozing, I wake shouting for my Mum. It takes me a few seconds to realise what I’m doing and I can’t remember the last time that happened.
The coming week is going to be a challenge in so many ways. Getting my head back together in time for 2 meetings and a trip to the House of Commons, trying to be competent, chair meetings and appear on top of things. And I realise this blog is pretty much factual without the emotional content. I think that’s all I can do for now.