Don’t do drugs, kids

Sometimes it takes me ages to write the next blog. It is usually because life gets in the way in some guise or another and, in this case, it’s because I’m feeling unwell in various ways. No sooner than we get the good CT scan, the rib pain comes on and doesn’t give up. It stops me from sleeping and I can actually point to the areas where it hurts. “It hurts when I press here” I tell Mr Mason. “Don’t press it, then” he says, with the age-old family joke. He speaks to the GP who says he will ask for an ultrasound of my liver. A couple of days later, I go to see a different GP from the practice. They are all nice, accommodating and listen to me but I am struggling to get someone to actually examine me. The second GP doubles my morphine so that we can get on top of the pain. He also writes to my oncologist to ask for a bone scan. Bone scans are my least favourite thing as they so claustrophobic. This GP tentatively examines me but really is interested in pain so that’s what his goal is. With this amount of morphine in my system, I am really off my head. I go to see another GP a day or so later (the exact chrononology is a bit muddled, unsurprisingly) to check his opinion of my  medication which he concedes is a little high but as long as it’s got on top of my pain, that’s fine. I can also take a sleeping tablet should I wish to. He also feels around the painful area on my ribs and can’t find anything untoward. He is quite reassurring.

The difficulty in taking lots of morphine is that there are side effects. I am in the car with Mr Mason when I can quite clearly see Mr Mason jnr sitting in front of me on the seat at the front of the bus carrying a big log and wearing fawn trousers. I text him to see if he will turn round but receive a text back saying “No, I’m not”. I know it’s pantomime season but I don’t get into the “Oh yes you are” repartee. He probably wouldn’t respond, either. I have conversations with people I know and people I don’t know, often deep and interesting but I find it a little concerting when Mr Mason breaks in with some real live conversation and I realise I’ve been off in my drug fuelled world again. I decide to cut down the amount I am taking gradually to see whether the pain returns or not and manage to get back to my normal level in 2 weeks which actually impresses the oncologist. He thinks that as the pain has subsided, it is probably musculo-skeletal and that it will flare up occasionally but that’s about it. He’s arranging for a bone scan which he says won’t be before Christmas and smiles with me as I realise I will get a week off chemotherapy over Christmas.

In between all this muddle, my friend, Mrs Jones, comes to visit me from Nottingham and we take her to see the seals. Ever since I open my eyes I don’t feel right. Can’t put my finger on it but I just feel a bit icky. As we are leaving to pass the last of the seals, we see a small chap who has found some water channels and is busy swimming up and down them. In one lane, he finds it blocked by a bull seal and his little fins go twenty to the dozen to get out of there. All the while he calls for his mum who ignores him and he seems to get further and further away from her. He starts to scramble up the grassy bank towards us, calling and puffing for all he’s worth. When he gets to the top he does the one thing I suspect will kill him. He puts his head through the fence and we jump away as though burned. If you take a look at him you’ll see why someone with less self-control might just have put a hand down to stroke his head, unwittingly meaning his mother will reject him and he will die. After a few moments calling us all Mum, he flapped his way off again towards another cow with her pups but he wasn’t well received. I could never be a wildlife photographer or journalist. The plight of this one little seal pup has stayed with me.

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As we leave Donna Nook, I begin to feel worse but we haven’t eaten so maybe that will make me feel better. It doesn’t. It just makes me want to urge the tea lady to hurry up with her food and then for my companions to eat faster. I am rapidly feeling so ill I don’t even feel I can speak. I signal I need to go home. Urgently. We arrive home, I dash to the bathroom, show Mrs Jones my trumpet lights and then say that I have to go to bed. She is great about it and has a good old natter with Mr Mason downstairs while I crash out. My temperature goes up and down, I feel a bit chilly and then OK so I tough it out. Over the next few days I am in bed with aching limbs and headaches but determined not to go to hospital. One one day, Mr Mason also feels a bit yucky (or “a bit umpty” as his parents say) so I am convinced it is a virus. Gradually the symptoms subside and, due to the reduction of my morphine, I stop seeing things and having conversations whether I don’t know if I’m awake or asleep. On our wedding anniversary – 36 years this year – I write Mr Mason a card but get confused with Valentine’s Day and our anniversary. I end up writing a lot of hallucinatory stuff which will no doubt make its way through the family annals as to “This is when Granny went mad and we have it in writing”. Actually, should the day occur when I am a grandparent, I am going to be Babcia in honour of my lovely friend, Ms Baranska, who very sadly died on 22nd November 2015, another victim of cancer, this time of cancer of an unknown origin. She was just 32.

Our exciting news is that not only is Mrs Safaie snr coming to spend Christmas with us but it also looks as though Mr and Mrs Mason are also coming. This news is absolutely epic given that Mrs Mason snr hasn’t stepped outside the back door for several years and I’m not sure even owns a pair of shoes any more. In between high temperatures, headaches and exhaustion, I have been ordering a new bed and bedding, re-arranging the bedrooms and making sure the annexe is up to scratch, getting a wardrobe dismantled (not the Mr Shaya jnr way), Christmas shopping and planning work for the new year. The physical work is not mine, of course, but that of Mr Mason and our gardener, Gavin.

I was almost on the point of declaring blog bankruptcy given that it has been so long since my last episode but I enjoy writing and although it’s frustrating when I can’t write chronologically, I suppose that level of control also has to be let go. I know there have been messages on Facebook and via email that I have not answered but if the choice is between a quick nap or writing, the quick nap will often win. So just sit back and imagine how the last great storm whipped through the village making it sound as though we were on a beach and shaking the ancient trees to their foundations (none felled, though, that I saw). The owls were quiet that night but are now back with a vengeance. And at the weekend we went to the Horncastle Christmas Market which is low key but entertaining and  I got to hold a barn owl which was incredible. I wish I could sign off with Too Wit, Too Woo but alas, that’s the Tawny owl so until the next time, Eeeeek eek eeeeeek!








An update on the good news

As most of you will know, my last scan comes back pretty clear with no lesions to be seen and no fluid in my lungs. This is amazing and brilliant and certainly adds time onto my life. I know we’re not all cancer experts here so it seems worth a moment of clarity. I still have cancer. I will always have cancer and will need to have chemotherapy every 3 weeks until something else happens. Another story in the press today says Kadcyla is NOT going to be approved for the Cancer Drugs Fund which means I am OK until April 2016 when something else will happen.

At the moment I have pain in my ribs which triggers a doubling of my morphine and prospective tests to have a look to see what is going on. After the CT scan good news, we go out and buy a really nice new Egyptian Cotton duvet cover and sheets in duck egg blue. Once the rib pain really gets going, it seems as though we’ve brought it on by celebrating with new bedding. It’s the start of our week off – a week with no appointments or work. We think about going away for a few days and then decide to have a staycation – visiting the places we don’t know around us. The rib pain comes on gradually during the week and I have to seek more pain relief although it makes me slur and feel out of it. On the final day, I have an appointment with the optician who is a lovely young man from Manchester and we chat about all sorts of things as he has a sense of humour which matches mine. He quickly discovers my left eye has deteriorated more than my right and when he puts a correcting lens in, I can see properly and realise why I have been feeling so unsteady when walking around. I am now longing for my new, very expensive glasses when I shall see the world right again!

Without my diary to hand, I can’t say what day we do what but it doesn’t matter and I’m not going to argue with myself on a point of when we were somewhere. We go to Donna Nook to see the seals again as there are more there now. The carpark is overflowing and I know there are Disabled spaces so get out of the car to have a look. Now at this point, I must confess that Mr Mason and I call them Selfish spaces. Now I have a blue card, they come in jolly handy but the ‘Selfish’ tag came long ago when, in a car park, we found lotso of Disabled spaces empty. “Look” said Mr Mason, “The Disabled people can’t even be bothered to come and use their special parking spaces. How selfish”. Of course, he said it with tongue firmly wedged in cheek and now we have a blue badge, we call it our own Selfish badge. So, I set off round the car park, stick and selfish badge in hand, to see if there was a space available. Indeed there was but a car was just about to reverse into it. I approached the driver and said “Did you know this is a disabled space?” He didn’t like being approached at all and I should have taken a sharp, pointy stick with me but alas, my stick has a flat, rubber bit on the bottom. I might have to modify it…… Anyway, he tried to ignore me so I spoke to him again. “No, it’s not” he said. I pointed out the Disabled signs. “I can’t see them” he said, which made me think he may be blind and, therefore in need of a Selfish spot but equally should not be driving. I pointed out that there was a bay or 4 or 5 parking spaces. His wife was looking more uncomfortable by the moment. “Well,” he said, still not looking at me “I’ll take my chances” and reversed back into the space. I stood nearby, thinking I was not going to make this a comfortable experience for him but his wife couldn’t stand the strain and got out of the car, looking at the signs all along the fence, clearly showing it was a Selfish bay. She went quite red and got back into the car, gesticulating wildly and made him drive off. Not before his parting shot which, had Oscar Wilde still been alive, would have envied it. “Have you been here this week?” I thought about it. “No” I said, and away he drove, thinking ‘Take that, you selfish disabled person’.

The beach at Donna Nook is fantastic and has hundreds more seals than on our last visit. We walk up and down, listening to the pups crying for their mothers with an eerie “Mum! Mum!” call. I am sure one seal is due to give birth at any time and, of course, while we walk off, she does. But really, they are dropping them like crazy. I take a film of two mothers having fisticuffs over the ownership of a pup with Mr Mason talking in the background about how he is going to buy a sausage bap and a coffee. I’m sure it wasn’t this hard for David Attenbrough. There is also a video of a pup struggling through grass, not its natural medium, calling for its Mum. They sound incredibly like small children. Anyway, I’d like you to know that in downloading the baby seal video to this blog has almost made me give up the will to live. It is INCREDIBLY SLOW and we can do nothing else on the computers but sit around and sigh, poking a key or two every so often. It’s now at 96.6% and the excitement is overwhelming. If it doesn’t work (you can’t add video directly to a WordPress blog – it can only be through a link) you will hear me yelling and carrying on for miles.

But it takes me ages to write this blog because I am so, so tired. Whether it is the medication or I am just going through a tired phase, I don’t know but it means I have to finish this post here. Mr Mason is so patient while I try to write with my eyes closing and I’m not sure it all makes sense but he deserves a lot of credit for this one. A few nights’ good sleep and some fresh air will help enormously and this is why I am going to post without spell checking or anything else. Just hit the button and switch out the light. Good night.


Brian’s Dirty Pickles

My memory continues to be poor only this time it shocks even me. The oncologist is going on holiday. Normally, he tells us, he takes action holidays (and he does say action rather than activity, creating a picture of a mild-mannered James Bond with a shock of black hair which must have been the bane of his mother’s life), but this time, they are going to Greece for a week. I think it is Crete or maybe Rhodes but certainly one of the bigger islands that we have been to and I wonder whether it will still be warm enough at that time of year. I remember taking the children to Greece in the autumn half-term and we had terrific storms over night. I think this is also the holiday where I warn them to be careful when walking at night so that they don’t fall over as the path to our apartment has lots of loose stones on it. Of course, as I am telling them this, I am also looking at the amazing night sky and inevitably fall over, coming down hard on one knee, necessitating a bag of frozen peas to be applied as often as possible and restricting the flexibility of my knee for the whole holiday. Sigh. Sod’s law, of course.

So, back to the memory failure. With Dr Chaudhuri taking his holiday when I would normally see him, I just have to get my blood taken at the end of the preceding week. On Saturday, I look in my diary to see I have chemo on the following Monday. It then sinks in that I have entirely forgotten to have bloods taken and feel like a complete waste of space. Sometimes, however, I just think things can’t go much worse so just whistle a happy tune and decide to arrive at the hospital early on the Monday morning. I thought that 8.45 would see the blood clinic fairly empty but the ageing population of Lincoln are made of sterner stuff and arrive in droves, packing the room out. This is not part of my clever plan. I decide to brave the filthy looks of everybody waiting and go through to see the phlebotomists who I have always found incredibly kind. I explain briefly about my brain mis-function and the cheerful lady says she will ‘do me’ straight away. “You’ve got a lot to think about” she says as I berate my stupidity. Some days a little kindness can go an awfully long way. I don’t have to wait an age for the chemo to arrive from pharmacy, either, so we are finished by early afternoon.

The following day is another hospital day with a CT scan which I am not looking forward to. The nurse manages admirably to insert the canula, especially as my Best Vein has been used only the day before. Every scan is a horrible reminder about what is really going on. Sometimes I can almost forget I have cancer, even though there is always a physical reminder in terms of exhaustion, fatigue, lots of drugs to take, itchiness and, of course, loss of a body part. Speaking of the loss of body part, I am getting rather fed up with the breaking down of the scar on a regular basis. I think I have complained on here before but it doesn’t seem to matter what I do, my camisole or bra always shows a little blood or weepy stuff on it by the end of the day. But it’s the scans that remind me exactly what illness I have. The scary one. The big C. The scan goes well with cheerful staff and black humour amongst the patients and then we’re off to go and buy more garden equipment that will chop up logs with ease. I am resisting the idea of a chainsaw but am not sure how long I can hold out.

On Wednesday we are off to Gainsborough so I can speak to the members of West Lindsey CCG about my experience of cancer. I have managed to hook up with a fabulous woman called Clare who works for an organisation called Development Plus in the Early Presentation of Cancer programme. Read all about it through the link but one of the aims is to discuss early presentation symptoms to GPs and this is where I come in. We have been discussing and thinking about what I might do for a little while and the invitation extended by the CCG is just too good to turn down. Looking at their CVs, about half are clinicians with the rest coming from all areas of the community including an ex-Deputy Chief Inspector. I don’t like to think in detail about what I am going to say. It ruins the surprise (for me) and I feel I speak much better off the cuff. With my memory fiasco earlier on, I ask Mr Mason about 20 times what the subject is. Clare also helps by saying “It’s whatever you want it to be about”. I have put on makeup for the occasion which means, obviously, that I will not cry.  Ha ha ha. I have 20 minutes and by about 5 minutes in, the first fat tears roll down my face. Tissues are passed discreetly around the board room table and water is poured. I scrub at my face and determine to continue, whatever. As I near the end, having forgotten to check the time on my watch when I started, I ask if there are any questions or comments people would like to make. There is a genuinely stunned silence with sniffles and everything. I have reached them. I have touched them. I have told them where there were learning opportunities which were missed and where well-meaning acts went horribly wrong. I explained what it’s like to feel patronised, to feel like you’re on a conveyor belt and, hopefully most of all, what it’s like to live with secondary cancer. I make sure I have explained the symptoms of Inflammatory Breast Cancer, MY pesky little cancer, which starts off small, looking like something which is all too often recognised as benign – an insect bite, mastitis, something that can be treated with antibiotics – before it reveals its true aggressive nature. I receive comments of hope and congratulation on my way out. We go and have a cup of coffee to soothe our nerves and then Mr Mason and I go and buy me a hugely expensive DuBarry tweed jacket for Christmas and I treat myself to a beautiful, butter-soft leather DuBarry shoulder bag. I feel I have earned it but realise this is just a one-off or we will be bankrupt before next year.

On Thursday we go and pick up Ms Marsden from the station. As we pull to a stop, Dog spots her and his tail bangs vigorously against the boot in a canine welcoming dance.We are planning to hit Hemswell Cliff, the huge antique centre built on an old airfield the following day and steel ourselves for an overwhelming array of antiques and gew gaws from various ages and various prices. It’s lovely to see Ms Marsden as we just fall into conversation as though we were just talking the previous day. She arrives with some wonderful treats – Hotel Chocolat biscuits amongst other things. It’s been a long week for me already so I check out quite early leaving her and Mr Mason to put the world to rights.The shops on Friday are actually quite quiet and we manage to navigate our way around for at least  5 minutes before I find a diamond ring I like. We also pick up a beautiful copper log box and an old brass chestnut roaster so we can roast them over an open fire. Hmm, I think we could write a popular seasonal song about that! There is a pretty silver and rose gold ring which Ms Marsden likes and as I have forgotten her birthday (brain like a seive) I buy it for her, despite her protestations. It suits her. We like lots of furniture but it doesn’t all suit our homes so we just come home with those three pieces, worn out but happy. Ms Marsden jumps up and down, fetching me drinks and snacks. Mr Mason smokes some fish and comes up with a very decent version of kedgeree which is delicious. Once I have eaten, I have to pack myself off to bed as I’m unable to keep my eyes open.

The following morning, a florist’s van draws up with a beautiful bouquet for me from the CCG I talked to on Thursday. I am very touched, particularly by the thoughtful card which reads “The CCG team was really affected by what you said on 28th. The courage, fortitude but at the same time your pragmatic light touch to the challenges you face was humbling. With sincere thanks xx” I’m so glad it made sense to them and, hopefully, a difference.

We drive out to see the seals who have come in to give birth to their pups at Donna Nook, not that far from us. After we arrive, we see lots of people kitted out with super long lenses and binoculars and I wonder if we’ll be marked out as the newbies who turn up expecting to see seals with their own eyes. Well ha! in the face of those sceptics! We see seals aplenty and watch the bulls square up to each other making the most eerie noise. And boy, can they move on land! Even at my fittest I don’t think I could outrun a seal. I’m ashamed to say we are so excited to see them that I forget which kind they were but I think they are grey seals and really worth visiting. The car park is pretty full when we pull in and the only space left is a disabled one, which, as you know, is wider than most. A woman comes running up and asks very nicely but in a head-waggling way and with her voice pitched higher than normal if we would move the car over so she can squeeze in? I tell her it’s a disabled space and she looks at me, crestfallen, saying “Is it?” like I was a 5 year old who has filled his pants inauspiciiously. Later on, we see her on the walk and she looks at me pityingly when she sees my stick. I don’t even bare my teeth. Some days even the nicest people just get on your tit(s).

On the way to Donna Nook I point out a shop to Ms Marsden called Brian’s Pickles. As far as we can tell over several years, Brian does nothing but pickle. He has told us his pickles are requested in the highest circles and the finest hotels. They are bought for society events etc etc and seems generally a nice chap. Early one morning when I was awake when I shouldn’t have been, I found Brian’s Pickles Health Rating on the internet. 5 being the cleanest of establishments, Brian scores a lowly 1. This gives rise to speculation in the car as to what Brian is missing to get that all important 2 or, conversely, what he does or does not do to merit such a low score. Not washing hands? Not washing jars? We are mystified but feel better than possibly the higher echelons of society who always crave Brian’s Pickles.

It’s taken ages to get this blog down as I’m spending increasing time in bed feeling exhausted and in general pain. I try not to take the extra morphine available to me but I don’t want to live in bed, either. I just want it all to stop and go away. Cancer, I’m having none of you. You can fuck off and pester someone else although I can’t think who deserves it, either. Cancer, go and eat a jar of Brian’s Pickles and see how you feel then. A taste of your own medicine, perhaps.