Tag Archives: exhaustion

A bird in the hand…

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I have started the process to make my head space a bit better. This includes 2 sessions at the hospice where I melt down to the extent where I break down so far I cannot breathe and make a horrendous noise trying to force air into my lungs.I consume large quantities of paper handkerchiefs and then can’t find anywhere to put them other than in the hand of the nurse. She takes them without a word or grimace. We decide on a few groups I can attend, one of which is called Words & Pictures because she couldn’t think of anything else to call it. It sounds like a nursery class but I gamely go along, because it might be good and I generally get a good driver to chat to. The car service drivers are usually in their 70s and have a sense of humour and a long list of anecdotes which I like very much. There have been a spate of signs put up recently in red and white, saying ER and looking very official but no explanation. Apparently they are Escape Routes should we get flooded. Another driver took a different view and thought they were something to do with terrorist attacks. I query whether the escape routes are for the general population or the terrorists. The penny drops and we laugh.

Words & Pictures proves entertaining, too. There are two men who are wheeled in and who seem to have dementia and two ladies in their late sixties. I am made a cup of coffee by a lady who was once a client and I used to train for when I ran my own training business. She remembers me and it seems a surreal experience. We play games with words and pictures, as promised in the title, and it’s actually quite good fun. Then we are set homework, to write a poem about something that’s really important to us. I’m not sure how some of the group members will manage but they’re all lovely, smiley and twinkly. After the session I have my first hand massage which is so relaxing and finishes off the session beautifully.

We still have so many visitors to the house; some to do with Brenda, some to do with me, some are for Mr Mason and I and some are for Mr Mason alone. I can’t remember which visitor it is but I know Brenda, thankfully, wasn’t there. The woman sat in the sitting room and was loving Lark who was loving her back and obviously decided she deserved to see one of her jewels. Lark’s jewels are the things she buries in her crate, hides in the baskets of clean washing or buries in the garden. The woman merited one of her highest jewels. one from the garden. Mr Mason and I are in the kitchen making tea and so forth when we hear a cry “Your dog has just put a dead bird in my lap!” Amazingly, she does not have a fit or crawl behind the sofa but when Lark sees we approach with the intention of removing her jewel, Lark snatches it back and tries to bury it in her crate in the hope we won’t see it. Ha! Sometimes we are smarter than a dog and the small bird, presumably killed by Freya, is removed and given a swift burial in the garden recycling bin. Lark sulks for approximately 10 seconds and then is loving the visitor again.

Our second bird story involves Jan, our cleaning lady who has has a few shocks with the dogs in the house (remember the time Lark ate the conservatory blinds when Jan was in charge?). Mr Mason and I had gone to see Brenda and when we got back, Jan was quite twitchy. “We’ve got a bit of a problem” she said and then proceded to tell us that she had heard a noise in the big sitting roon and thought there was someone in there. The layout of the house means that the thick walls stop sound carrying. From upstairs, you can’t make someone downstairs hear you (or so Mr Mason tells me).  We cautiously opened the door to see chaos – china and pottery thrown about the  place and 2 enormous crows in the room. One was still trying to crash through the windows and the other was lying on the ground, dead. We closed the door wondering how on earth we were going to get the live bird out. I had visions of being attacked if I tried to move the dead bird – Hitchcock all over again. The bottom windows don’t close and repeated battering of the top windows, even when open, had resulted in one dead crow. Of course, at this point our trusty ex-SAS gardener arrives and immediately takes control of the situation.  He opens the front doors (which are double), stations Mr Mason at the bottom of the stairs so that the remaining bird won’t fly upstairs and shoos it out the front doors which is does as though trained for this moment. Mr Mason and the gardener set about cleaning up all traces of crow and another bird goes into the recycling bin. I bet the cats were kicking themselves for not ambushing birds trapped in their own house. The chimney breast gets stuffed with paper as far as it can and we hope we have no more visitors of that kind. Unless they get so far down, make a nest on the cardboard and then die of starvation…Hmm. I don’t think there’s an answer to this except to get some roofers to put cowls over the chimneypots.

You may have noticed that it’s been an age since I posted. Writing is one of the things I enjoy doing so it’s a shame I don’t get more of it done but one thing that prevents me is tiredness. You may relate to this. You’re sitting on tube after work or in bed after a long day and think you’ll just get a book out and have a look and before you know it, your eyes are closing and you’re breathing evenly and deeply, well on the way to sleep. It might sound strange but when I wake up, I’m well on my way to sleep. I spend quite a lot of the day trying to stay away. The oncologist says this is because I haven’t had a break from chemotherapy for nearly 2 years and it’s using up my reserves of energy. But I have noticed that I spend more days in bed these days – usually one or two – and the other days I have to go out, get some fresh air, walk around a bit, anything but lie in bed although it’s calling to be even now. Sometimes I’m writing and find my eyes are shut and my hands are still. but I can’t live my life asleep. So we go walking in the woods, trawl through antique shops and the 2 fabulous department stores nearby – Oldrids & D0wn Town and Eve and Ranshawe. The former sounds much more exciting than it is. The Down Town part is in an industrial estate on the fringes of the town and sells the lighting and obligatory furniture. I once went up to a desk to compliment them on a member of staff who had been exceptionally helpful and the two women behind the desk held up their handbags to ward off the evil spirits they thought I was bringing. The other department store, Eve and Ranshawe featured on a Mary Portas series on how to make your shop increase takings and how to find out which member of staff was really mucking the whole thing up by being a cow. Job done. Cow not seen since. My average waking day is around 6 to 8 hours although I do count resting hours in bed as sleeping, mostly because I can’t get comfortable downstairs and will definitely be asleep by 4, waking several hours later for a late supper. I’m hoping this is just a phase and that I’ll recover enough strength if I rest as much as possible, boring though it is.

So that’s the contorted and convoluted version of the last few weeks. I’ve left out loads, some deliberately and some by accident but I aim to write the next blog sooner. Night  night. Yawn……zzzzzzzzzzzzzzzzz

 

A really bad novella

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If you’ve slogged your way through the blog from the beginning or so, you will know that there are many things which have happened to us. What, in a tv series or book, would be held up as poor drama – over exaggerated and melodramatic at best, has really happened to us. The initial cancer, the secondary cancer diagnosed a year after finishing my last drug, Herceptin, moving house and going to Thailand despite reservations of my oncology team, managing to get the whole family together for our first Christmas in the new house and then the inconvenient  and tragic death of my father-in-law, just as he had decided to sell up and move to the same village as us, leaving us with my mother-in-law who has Dementia worse than we had even imagined. The next dramatic episode is provided by my father who telephones to tell us he has prostate cancer. Given that we rarely speak, it is momentous news on all fronts. He sounds frail and frightened, my mother having died a few years ago and he having had the benefit of good health for most of his 88 years. Every time we seem to get on our emotional feet, something comes along to knock us down.

This time, I feel trampled down into the mud, not just because of this last piece of news but because of the cumulative crap which has been thrown at us over the last 4 years. I go to my Reiki appointment at the Hospice and just talking to the Reiki practitioner, I break down and I can’t stop. Nose bleed, the full works. It all comes pouring out and I realise as I speak that I need help and am amazed I haven’t asked for it before. It’s like I’ve been blind and deaf to what’s been going on in my head and heart and, were I a friend, I would have been beating myself about the head for being so stupid (in a nice way, of course). There are lots of suggestions that I might take up but this time I am single-minded in what I want and refuse anything but those things that really appeal. So we make plans for the following week and I leave feeling I have achieved something. On arrival home, I explain to Mr Mason that I am broken and I need help to get back on an even track. He looks just a notch down from distraught until I explain what I need and how I am going to get it. Today I’m tearful, tomorrow I’ll be smiling and joking and it can’t go on. I am wearing myself out psychologically and emotionally and not really able to enjoy the health I have at the moment. I feel much better now I have confessed to the relevant people just how awful I feel and they have taken me seriously and come up with an immediate plan to help me. It’s such a relief. Next I go on line and make an appointment to see my GP so he can go through my meds and see whether we should be tweaking, adding or subtracting. My pain isn’t really under control and the Hospice staff say this is unreasonable so should be the first thing to get under control. So that’s done.

The next day I feel much better. On Friday we go to see the oncologist and I explain to him how I’ve been feeling and he tells me to do things I like, go on holiday, dance, do whatever gives me pleasure and to really live my life. I like him even more. He’s not saying “Get it done before you snuff it” but just enjoy your life and although that makes me cry, it’s a good sort of tearfulness. I tell him I would like to see him dance but he demurs.

I’m not claiming I’m going to be a new me. I’m just going to concentrate on myself a bit more (as Mr Mason has been telling me for ages). The bad novella with all the overly dramatic bits, formerly known as My Life has taken its toll and I need to re-group and set myself up properly again. Going to bed at 4pm every day has to stop. Pain has to stop. Exhaustion has to stop. Tearfulness has to stop and melodrama has to stop. That’s it. I’m signing off with one of my favourite tracks and thinking of Les in Brentford (have you seen him lately?)

 

Lark’s Diary XI

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Well, I’ve just found out it’s going to be Christmas although I don’t know what it’s about except lots of extra delivery men come to the door and leave boxes lying all over the place. Some packets are smaller and mum puts them in a bigger box in her office so it’s quite easy to steal and run away with. Then she gets a bit cross and puts on her cross voice which is one up from her disappointed voice but nowhere near her “I can’t believe you did that!” voice. That voice was used when I ate her new glasses. She has two pairs but I like one better and the chewy plastic arms have just the right consistency so when she left them on her bedside table when she went to have a shower, well, it was irresisible. The cats talk to us sometimes but we can’t understand exactly what they are saying enough to answer but we get their drift. 1. Don’t sniff a cat’s bottom (unless its asleep) 2. Rub your head on the side of the cat’s face if it’s feeling in a good mood. 3. If it hisses, back away politely.

We also have language which is more than just some old woof, you know. Whippets have a good range of language and my repertoire of moaning, sighing and groaning is extensive. Mum doesn’t understand all of it, of course, but she tries.

With all the parcels arriving, mum has invented a new game which I like. She finds something sticky and then sticks it on my forehead and I have to spin round in circles and rub my paws on my head until I get it off. It’s a good game to play indoors because we have to do lots of indoors things lately although we did have a good run in the woods yesterday and got really muddy. It was great fun. Mum and Mark are putting a new bed together in the annexe today and mum is also trying to wrap presents and sleep at the same time. Mark’s mum and dad are coming for Christmas and are Very Old so they are sleeping in the annexe so I can’t trip them on the stairs and kill them. Our other visitors are all quite young, at least, no older than mum.

We are still struggling with my claws. Again, some nosey woman said she thought my claws were a bit long and when we went home mum got the cutters out so she could trim a few. The thing is, it always feels like she is going to cut my paws off and I have dreams where she cuts them off and them sews them on her own feet so she can run really fast. Of course, she doesn’t cut my paws off and gives me Strictly Forbidden chocolate buttons while she does it. It doesn’t make it any better, though.

So, Christmas. There are lots of good food things coming into the house with 2 sorts of meat, smoked salmon and smoked eel, lots of very stinky cheese and way more than mum, Mark and his parents can eat so either the rest is for Archie and me or there are more people coming to expand the pack. I expect it’s the latter unless it’s the Christmas donkey who had the baby or the fat man dressed in red who seems very popular at the moment. I am hoping it’s Ollie and Fran with Becky and Rouzbeh because they play with us and run around. But even if it is the fat red man and the donkey with the baby, we’ll have a good time

So I hope you all have a good Christmas with plenty of stinky cheese and a big pack around you. If you get presents, I hope you appreciate them and the final words of wisdom from my mum is “Don’t give dogs sprouts”. I don’t know why; they’re quite delicious. And if they are worried about the fall out, I think this big black animal is far worse than Archie and me.

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Deck the halls!

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It is mayhem in our house. I know, most homes have a period of stress before Christmas but this exceeds anything I have experienced before. Firstly, the dogs think I am wasting too much time writing Christmas cards and wrapping presents that need to go in the post. There is the buying food online and discovering some things just do not travel outside London unless you find the smallest retailer who will do it because he loves food. And the local smokery who catch local eels and the American crayfish who are taking over our waters and can deliver to the door the day before Christmas Eve (we hope). The dogs care nothing for the present ordering, sorting the sleeping arrangements out and trying to work out how to decorate the 30 foot tree growing in the front garden. Luckily we discover a power socket located outside the house so we think we will be OK. Now all we need is a powerful trampoline and a small child to put the lights near the top. Actually, it is Gavin, our ex-SAS gardener who is coming to help us and I have every faith in a man whose solution to everything is a lump hammer.

On Monday and Tuesday I am on my own as Mr Mason has a meeting in London. Dogs decide this is the right time to bring as much mud into the house as possible, especially smearing it on the cream coloured carpet in the big hallway. We bought a lovely Afghan rug to cover most of the length of the hall but then Lark discovered that eating the fringing of the rug was very exciting. I retaliated with chilli powder, high strength, both sides and both ends of the rug. The battle is nearly won but it’s also a wonderful place to tear up cardboard, paper and kindling. The battle continues. 3 oranges disappeared from the side of my bed today. I have found 1. My new glasses lasted from Halloween until this week when the temptation of the chewy plastic of the arms proved just too tempting. Luckily she did not eat the lenses so I have just paid £95 to have them put back into the same frames. The optician was impressed by the destruction. He also asked why I didn’t use my Boots card when I collected my original sets of glasses (yes, I always get 2. I am not stupid). “I think you were wearing a cloak and fangs the last time I saw you and that might have put me off” I replied. He is the sort of optician – Brett – who is nice but probably wears comedy ties and socks all the time and drives his colleagues to distraction with inane jokes. I can bear it for 45 minutes but was glad it was his colleague who did my eye test.

Monday and Tuesday reinforce the idea that I find it very difficult to look after myself apart from bathing and getting dressed. Eating is a challenge, partly because I rarely feel hungry and also I feel quite unsteady in the kitchen so worry about dropping something or burning myself. Is this really me? I have always loved pottering around the house, especially the kitchen and yet now it’s somewhere I just pass through. During the two days I discover we have run out of Bonio!! It’s going to be a long two days.

Next week I have my long-awaited bone scan to see if there is anything obvious to pin the searing rib pain on. My least favourite test lasts nearly all day and the one bright moment in it is that we get to pick Mr Mason jnr up from the station so he will be with me when Mr Mason goes to collect Mr and Mrs Mason snr, a two day trip. Everyone else arrives on 23rd to much excitement and barking, I suspect.

I always enjoy Christmas and know this one will be extra special with both offspring and partners, Mrs Safaie Snr and Mr and Mrs Mason Snr making the first venture out of the house since I don’t know when. We will be 8 for Christmas lunch unless someone drops out. Whatever happens, it will be fantastic.

As a footnote, if you don’t receive a Christmas card, I do apologise. Those who read my blog will understand that with all the hospital appointments and afternoons spent in bed, I have a lot less time than usual. Those of you who don’t read the blog, well, you probably won’t miss my card anyway. And don’t think I don’t know who you are…

Brian’s Dirty Pickles

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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.

Good news, bad news, good news and frustration

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This week is full on, as the Aussies say. We go to Lincoln to see what the new oncologist might be like and find that he seems calm, knowledgeable, straightforward and prepared to answer questions. This sounds good. One of my complaints is that I have not received a single result of ANY tests I have had done with Virgil since I started seeing him. This includes blood tests, tumour markers, Echocardiogram and CT scan. I have asked at the GP surgery, asked Virgil’s own secretary and also the chemotherapy nurses but they have just drawn a blank. He probably has the reports but hasn’t looked at them yet so no-one else can give me any information. This is thoughtless to say the very least. We agree between us that Dr Chaudhuri will take us on and that we will travel to Lincoln for treatment and to see him every 3 weeks. While I am drawing a deep breath of relief, he goes to see if he can see the results of any of my tests. Swappping to a new oncologist means new dates to see him and different treatment dates and they happen to fall right when I am going to the Penny Brohn Centre with Ms Marsden and Mrs Ure. It would mean I would get an evening and half a day before having to be picked up and brought back home again. I really love going to Penny Brohn but think this might actually be more stressful that just going along with the new dates. Just as we are musing on this, we are asked to go through to see the CT scan. He tells me there is a spot on my liver which is suspicious and I tell him this has come up over the last 2 years which he is pleased about because he didn’t think it warranted further investigation so he will look at the Charing Cross notes. He then whizzes around the chest area and there doesn’t appear to be much there. He says there are just a couple of small spots but that’s it. I ask about the 1cm lesion at the base of my right lung. “No,” he says, “there is barely anything there. I can hardly see it”. I begin to cry with shock and he says “This is good news!” which I knew but was finding it hard to take in. Apparently there are just a couple of small spots throughout both my lungs. My pleural effusion is resolving itself by thickening the lung wall in that place so there is very little fluid there not. All good news. We have found an apparently good oncologist AND had the best news we have had since I was diagnosed all in one day. I decide to ditch the morphine for one night and indulge in a glass of champagne which tastes wonderful. Apart from the offspring, we keep the information to ourselves for a couple of days. It is given moderately to Mr Mason’s parents in case they think I am cured. I don’t feel like shouting it from the rooftops. I feel it has given me probably another year or so which is wonderful but I am cautious in my optimism. It’s good news but that’s all it is for now, and I feel a lucky girl.

On Wednesday I have a really nice woman from Sheffield University come to talk to me about my blog and how I communicate my feelings about terminal illness. We have a really good chat about it which I enjoy immensely. I tell her she’s come on a good week and confide my good news to her which makes her cry. Always a good sign in a researcher, I think. She recorded our whole interview so some poor person has to transcribe it and then it will be analysed in the same way as the blog. She confessed she is reading the whole blog and sometimes laughing out loud at her desk when her fellow researchers might be reading something drier. It’s ultimately about communicating difficult news, I think, although I hope she will correct me if I’m wrong when she gets to this page.

The frustration is that I am trying to have separate pages on this blog. One for pictures of the house, one for Lark’s diary (she is a precocious little thing except in the matter of house training) etc and it’s not really working out. I checked out a few bits of information on different sites which all say it’s so EASY but they lie. If this blog appears odd or unusual, it’s because I am so tired i am actually falling asleep over it which is not good. So, this one is launched with no checking, no nothing. It appears red in tooth and claw. It’s hard to write when you can’t actually see the words properly as they keep moving all over the place. I still hope you enjoy it.

Lark’s Diary II

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On Friday, Jan the cleaning lady comes and pushes the noisy vaccuum cleaner around but she also spends time rubbing my head which I like. Mum wasn’t feeling well so sat in her tippy-up chair under the apple tree with a blanket around her. She said she had done too much the day before. I sat under her chair and kept pushing her bottom when she wasn’t expecting it. Archie and I are trying to perfect our game of bitey-face and he doesn’t growl so much which is better as that scares me a bit. It’s quite easy to lose him in the garden as I can jump into a bush and he won’t see me if I lie still. Mum took a film of us playing and although I squealed a bit, I liked it really.

Me and Archie having fun

Today it is raining and Mum took me outside for 10 minutes in the rain to have a wee but it wasn’t nice out there so I waited until I got inside and before she had hung up my coat and lead, I had done a lovely big wee in the utility room. I don’t know what all the fuss is about. Everyone else (except Archie and the cats) goes to the toilet indoors. Perhaps I should start a campaign. Anyway, I am now in what Mum calls “The Dog House” and am sitting in the basket under her desk while she writes. Life is so confusing. Mum also says if this post doesn’t appear in the Lark’s Diary page she is going to give up. Give up what I am not sure.

A world of fatigue

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These days I am living in a world of perpetual exhaustion, fatigue, tiredness – call it what you will. Symptoms go like this. Go to bed at a very reasonable hour, between 9 and 10pm. Try reading for a few minutes but give up due to inability to focus. Wake up around 7am, still unable to focus and feeling very sleepy. Negotiate with self and sometimes Mr Mason about what time I will get up. Should I continue resting or should I get up and try and energise myself that way? Today we negotiate 10am as a getting up time followed by shower and getting dressed. My body cries out to go back to bed. I find it very hard to read anything as it is so difficult to focus my eyes. I sometimes feel slightly inebriated so if you ever get a message from me which is a bit weird, put it down to this strange fatigue because I will have written it when only half awake. The feeling inebriated part is so ironic in that I have not had a drink in months. My medication makes that a no-no but I also don’t actually feel like having a drink so to not remember what I did or said the previous night is a bit galling, to say the least.

Having got myself ready for the day, we head off for Sainsbury’s for exciting things like bleach and smoke detector batteries. One battery failed the other night leaving Dog in a state of high anxiety. He either cannot bear the noise the detector makes when it tells you the battery is failing or he has been in a fire before as he trembles and cries and this state usually lasts around 24 hours. On the way round the supermarket, I find myself a boyfriend of around 80 who needs help finding the right kind of rice. I love having conversations like this in supermarkets. Mr Mason doesn’t pick anyone up but buys some beer to cheer himself up. This is short-lived as he leaves the pound coin in the shopping trolley. On arriving home, we find next door are having their windows cleaned. Hurray! This was not a job I was looking forward to and knew it would not be Mr Mason who went up the ladder. Actually, I didn’t think it would be me, either, as the windows are very high and I am so unsteady and accident-prone. We nab them and they come round straight away and spruce us up, front and back for £20 which is brilliant. Dog and Lark decide they love the window cleaners in the garden but once they are up their ladders, they only want to bark and growl at them to show how fierce they are. I hope my training to not bark only extends to when we are in the house. Sometime while the windows are being cleaned there is a huge bang which knocks out the internet temporarily and sets off alarms in the village. There are occasional bangs from a gas gun to scare birds away from nearby fields but this is much louder and apparently in the sky. Hopefully it will be on the news this evening. We live an exciting life.

So, back to the fatigue. I am obviously at my desk and typing but boy, it’s hard to keep my eyes open. My choices are quite limited. I really understand the benefits of exercise in terms of increasing energy but I feel I’ve done that with my Sainsbury’s trip and a little play in the garden with the dogs. So what should I do? Sit on the sofa and try to read (through unfocused eyes) or watch tv or go to bed and sleep? If I do either I miss a lot of the day and I don’t like to do that. I have tried drinking Diet Coke and coffee which is not decaffeinated (which would be my usual brand of choice) but nothing seems to work and tiredness combined with pain can leave me tetchy and irritable. Painkillers also make me more tired, obviously, but it’s hard to pinpoint the exact cause of the fatigue. Is it cancer, Kadcyla, Fibromyalgia or something else? Knowing the cause probably isn’t going to help as there clearly is no solution; I just have to get on with it and manage it. But when the sun is shining, I really like to be out pottering around the garden. Maybe I’ll just drag my reflexologist’s chair out under the apple tree and have a doze there. It sounds better than sitting inside with the tv.

And I heard a brilliant joke the other day which amused me and I will leave you with. There were 2 cats trying to cross a river. One cat was called One Two Three and the other cat was called Un Deux Trois. Which cat do you think successfully made the crossing? It was One Two Three because Un Deux Troix cat sank. Enjoy, courtesy of Mr Tozer!

The poor are blamed for everything

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It’s been very quiet on the blogging front since Christmas but now I’m back, dragged unwillingly from the delightful torpor of Christmas afternoons by the fire into the maelstrom of ‘sorting the house out’. This is because Mr Mason has taken the bit between his teeth and is going through the house like a tornado. This means particularly sorting out our bedroom which is, I admit, long overdue. Taking a break from my sorting of books, I check my email and am find a delightful missive which makes me smile and wonder. Yesterday was Mr Mason’s birthday and I ordered him a tweed jacket and some very smart trousers but they weren’t delivered in the time frame specified, even though I had paid extra for the service. Luckily, they arrived the day before his birthday but the email was an entertaining extra. This is what they said. “Please accept my apologies for the delay. There were a few issues regarding power cuts related to the poor which send our systems offline for an entire day.” Hmm, those damned poor people again, interfering in my postal deliveries!

So, Mr Mason’s day begins with a skype call with Miss Mason in Bangkok and continues with an exciting viewing of the latest Hobbit offering in 3D. We did not expect the 3D addition so it was quite a thrilling addition. Yes, we are easily pleased. The film is the usual serving of elves, hobbits and dwarves battling with orcs, silly jokes and lots of things being killed. The best line in the film is “Dad, why are there dwarves climbing out of our toilet?” Sorry if that’s spoiled the whole trilogy for you. Blame it on the poor. Mr Masons’s day gets better and better as Master Mason and Ms Atherton appear as if by magic and we whisk him away to a local sushi bar where we are served with lavish portions of fabulous food and then given a free dessert followed by tea. It’s a nice little restaurant that hasn’t been open long so we have tried to patronise it as often as we can and the owner tells me friends we rook there recently have since returned to eat which is great.

Christmas was lovely. We all wear reindeer antlers to show just how jolly and festive we are. Some of us wear them with pride, others under suffrance but we have a really good few days and Dog is ecstatic to increase the number of his pack while Master Mason stays with us. The present to Miss Mason and her fiance is a bit of a disaster. Posting it on 10th December we feel we have plenty of time, particularly as Christmas is not an event celebrated much in Thailand so postal services will not buckle under the weight of a million cards and parcels. The parcel still does not arrive so eventually Mr Mason, swearing loudly at the automated voice, gets though to a real person at Royal Mail. They are able to track our parcel to Belfast where it has not been able to fly as it contains ‘something’. The parcel is not going to Miss Mason nor, it seems, is it being returned to me. It is just languishing, having a rotten time of it. I now have to go to the Post Office to claim it back by listing everything it contains and how much it cost. Presumably they then convene a ‘contraband party’, open all the presents in a festive flurry before hopefully returning the parcel to us so we can repeat the whole expensive performance over again. Meanwhile, Miss Mason is left with one slightly dodgy party whistle and no gifts. What a let down. At least the poor are not blamed for this fiasco although I have yet to enter into written dialogue with Royal Mail so I wouldn’t count it out just yet.

As for myself, I have found my energy to have deserted me in a big way for the last few days. Sleep has become an annoyingly rare commodity, despite waxing lyrical about the benefits of sleeping under a wool duvet and on top of wool pillows. The wool duvet is, I have to say, supremely comfortable and I would highly recommend it. It still doesn’t lull me to sleep and by day I don’t like to sleep for fear of missing something or waking up grumpy and still not sleeping through the night. All this culminates in an extreme exhaustion which requires me to do nothing except sit and wait for it to pass. Yes, we have been here before and I know there is nothing to do about it but it still drives me nuts. If only I had the energy I would go and find some poor people I could blame my situation on.

Exhaustion is so tiring

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It’s true. Being tired is a most tiring and tiresome thing. Yesterday I watch a small part of a tv programme about being more responsible for monitoring your own health. Part of the documentary shows several older ladies who decide to make sure they walk 10,000 steps a day and who say they felt much better for it, more energetic etc etc. They even say it wasn’t that hard. This sounds good! I decide this will be me. I will banish my exhaustion by exercise, by walking 10,000 steps a day and be bright-eyed and glossy-haired with a spring in my step in no time. Did I ever tell you what an optimist I am?

This morning dawns bright and Mr Mason asks if I want to go out on a walk with him and Dog. Yes! I do! This is the start of the bright, energetic new me. I decide my aches, pains and exhaustion will disappear under the sun, be blown away on the breeze. It’s so simple. We set out and Dog walks nicely, not pulling and not stopping too often to sniff at something interesting. As he navigates pretty much by the smell of his own pee, it is quite an important part of his day. We get to a crossroads which is obviously of some signifigance to him and he just HAS to sniff and then pee. On a side note, I do wonder how much pee dogs actually contain. Dog has a bladder of amazing size and control. He has been known to pee continuously for up to 2 minutes and yet still find more to mark his route. Where does it all come from? But I digress. Pauses for sniffing and peeing make me more tired. Once momentum has been gained, it must be maintained or else I think I will stop and never move again. Eventually we get to the park and Dog is released from his lead and can run free with a look of bliss on his face. Periodically our offspring get obsessed with teaching Dog things. I taught him to bring his ball and to get off the sofa. Also, I believe, to sit. Ms Mason, who has since gone to live in Bangkok, so great is her embarrassment, once believed she had taught Dog to spell. This was on the basis that she would spell P-A-R-K rather than say the word. He responded to the tone of her voice and she was convinced he knew the spelling. When she started to call it ‘The Green Place’ instead, he responded to that in the same way. So, no spelling Dog, then. Before leaving for Thailand, she engaged in a campaign to teach Dog to roll over. As you will know from his photo, he is structurally unsuited to this task and we have not progressed beyond the ‘side’ command, whereupon he will lie in an awkward twisted shape in an effort to please us and be rewarded with a treat.

So, we get to the park, throw ball, tidy up after Dog and by the time we’ve gone through into the fields beyond, I am knackered. Beyond tired. We sit for a while before wandering slowly back with a stop on another bench before we leave. I am still very much focused on what might be and how good it would be to walk 10,000 steps and be all bright and bouncy. After getting home, we have lunch and then I say I am going to the shops to buy some fruit. Mr Mason doesn’t stop me. Damn. I head out and wonder if someone has stretched the road as it feels so much longer than usual. I don’t even have the heat to blame as it is quite cool so I am clearly Just Plain Exhausted. I walk to my favourite shop to find – horror of horrors! – that they have no cherries. This is just not on. I have eaten kilos of cherries this summer as they have been particularly good and to find my main supplier out of stock is just not good enough. I am a cherry addict and I need my fix. I have to go and sit down in a cafe and have a cold drink to recover from the shock and, to be honest, out and out tiredness. Once I have sat there for a while, sipping my drink and playing with my mobile, I heave myself up and go to Plan B shop. They have cherries of a lesser quality but better than nothing so I buy a bagful, throwing in some sultana grapes, limes and mint and coriander for good measure. I am thinking Mojito with the mint and limes with the golden rum I brought back from Oslo. I know, I am mixing my cocktails and my continents.

I make it home although each step feels heavier than the last and by the time I reach the front door, I could just weep. Mr Mason is on hand to bring me a cup of coffee and see me settled on the sofa. With normal tiredness, sitting or resting will improve how you feel. This doesn’t seem to work so well with Fibromyalgia and so by 5.30 I am asking if it is too early to put my pyjamas on. Luckily we are not the types who dress for dinner so pjs it is. The next question is – is it OK to drink a mojito when wearing pjs?