#107 days

I have spent a lot of time thinking about what I would write on this, my adopted #107 days. The day itself has huge significance. It is Mother’s Day in the UK. Mums all over the country will be receiving cards, hugs and kisses from their children but there is one household I know of, and God knows, there will be thousands of others, where a mum will not receive anything from one of her children. And I can’t really imagine the pain of that scenario.

Connor Sparrowhawk was an 18 year old man with a great capacity for joy and his nickname was Laughing Boy. Sometime in early 2013, Connor was having a hard time of it emotionally, as many teenagers do at that time. His family were worried about him and they sought help from the NHS. He was admitted to an NHS assessment and treatment unit. At this point you need to know he was a young man with autism and epilepsy. His family had lovingly brought him up, catering to his needs and giving him a good, solid home where he had the love of his siblings and the dog, Chunky Stan. Going into an assessment unit was, they all thought, a good move. To be able to assess what was happening with Connor and then to treat him so he could go home and continue with his life.

What can I say about Connor himself? I never met him but so wish I had. He was clearly a very funny and witty young man because many a time I’ve laughed out loud at the things his mother, Sara, has written about him. He was not a faceless boy even though we had never met in the flesh. He had depth, he had character and he had passions. Eddie Stobart, lorries, buses and the Mighty Boosh. He was such a real person to me that I took photos of lorries I saw in motorway car parks and sent them to his mother so she could pass them on. So please, before you read any further just take in this one point. Connor Sparrowhawk was a real, living, breathing, laughing young man with the rest of his life stretched out before him.

His time in the unit was not a picnic. He was deemed to be an adult and therefore his parents and family could only visit if he agreed. Asking a direct question to someone like Connor was not always helpful as he was not always in the place where he could give a direct answer. Like “Yes! I want to see my mum”. His younger brother, Tom, was not allowed to visit because staff said under 16s were not allowed on the unit. If I told you that was a lie, what would you think? If I told you the unit had been inspected 2 years previous to Connor being admitted and that they had failed the inspection, what would you think? The report said it had ‘serious concerns’ about some of the practices being carried out, one in particular being their methods of restraint. If I now tell you Connor was restrained on several occasions whilst being in the unit, how do you feel now? If I tell you there was an inspection just two months before Connor’s admission on the basis of it being a centre of ‘good practice’ and that the inspectors were horrified by what they found, what do you think? If I told you staff did not supervise Connor when he had a bath and that he had an epileptic fit and drowned, what would you say? And that there was not even a policy on epilepsy, even though it is common for people with learning disabilities to have epilepsy. And this is a Unit for young people with learning disabilities. He was there just 107 days. Our collective jaws, surely, are on the floor right now.

When I saw the status on Facebook that this beautiful, intriguing and funny young man had died, I was stunned. And I cried. How could this happen? Well, sadly, we can see how this has happened. A catalogue of falsifications, neglect and shoddiness labelled ‘care’ followed by attempts to pass his death off as ‘natural causes’ and more wriggling than a bucket of eels.

I would invite you to imagine this were your son, daughter, partner or parent but I suspect you’re ahead of me on this one. As a mum, I am always looking out for my pride, my pack. Not in a paranoid way, but just keeping mental and emotional tabs on them. And at the drop of a hat, I’ll be there to fight for them, soothe, snarl at transgressors because that’s my job. So I find it really hard to put myself in Sara’s place today. She has lost one of her pride and the pain must be unendurable. Connor’s death was totally preventable.

I really have not done justice to Connor or his mum, Sara, but I would urge you to go and check out her blog to see what this fierce lioness has been doing lately. She is fighting for Connor like there is no tomorrow.

And I don’t know if Connor ever heard this track but if he did, I like to think it would be one that he would enjoy.

Who in mortal chains

This reblogging comes with a health warning…it will seriously damage the rest of your day and you may even not sleep well. You should still read it, though. Read and pass it on. Please.

Who By Fire

Where has the rage gone?  It’s still there, but seems to have transformed itself into a terrible calm, as though I had gone right through Dante’s icy lowest circle of Hell and discovered the place, the unreal universe, where there are temperatures colder than absolute zero and water doesn’t merely freeze, it anti-boils.

Backing up a little, this blog was originally set up because of the #JusticeforLB campaign.  Since Connor Sparrowhawk, known as LB, drowned in an NHS bath in Oxford’s Slade House Assessment and Treatment Unit, his family has, through magnificently relentless digging, discovered that:

  • the ‘care’ given at the Unit was inadequate to the point of negligence;
  • there was a de facto four monkeys policy – hear, say, see and do nothing;
  • the care offered for Connor after his death continued to be inadequate: the official post-mortem did not examine the possibility of epileptic activity leading to submersion;
  • the organisation…

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Seriously, really?

I have gone beyond the pale, so far I am a mere whitewashed speck and I don’t like it. When Miss Mason was small, she used to say “I don’t like it!” in a very peculiar voice that I still find myself using today. Toddler speak. Anyway, on Tuesday I go to Charing Cross to see two friends, one of whom is having surgery and the other who is having a new drug, TDM1. So new is this drug that it is not on the NHS prescribing list and no-one seems to know anything about it. What are the side effects likely to be? I ask. “Don’t know. No-one knows. It’s a mystery” she says with resignation. Yep. Nothing to do except take the drugs and hope for the best. I am actually hoping for more than best because she is one diamond in my depleted night sky at the moment. My other friend is having herself tidied up. This is short-hand for removing a radiotherapy damaged implant, re-doing the reconstruction and up-lifting the other breast so it will resemble the other. When I go to visit her, there is a woman in the bed opposite she describes as ‘a shouter’. Oh, yes, indeed she is. She shouts at every approach from a nurse. “Don’t do that! Don’t touch that! Don’t move it!” As soon as one nurse has seen to her she is ringing the bell again with a delighted look on her face. It is time to go when she orders a commode. As the curtains are drawn we are hoping it will just be for a wee. Some things should really be private. However, it sounds as though she has a racehorse in there as a Niagara Falls sound-a-like issues forth which continues far longer than nature intended. Henceforth she is known as Shergar. I hitch a ride home with my TDM1 friend who is already feeling the effects. The only information she has been given is a brochure for health professionals. Sigh.

Today I have a meeting at Kings Fund which starts at 11, leaving me time to have a slow start to my day. I admit I have been feeling more and more tired recently and am glad it does not start at 9. I work out what time I will have to leave by and then work back from there, giving myself a time I must get up by. I have coffee, I shower and then dress as I listen to a really interesting Radio 4 programme on women in Islam. I keep glancing at the clock to make sure I am on time. When it says 10.33, I go downstairs and gather my things together before Mr Mason gives me a lift to the station. Fellow Londoners will be spotting the deliberate mistake here. If you ever ask someone in London how long it will take to get from point A in London to point B in London, they will overwhelmingly say 1 hour. It will take me almost an hour to reach Kings Fund and I am leaving the house at 10.45. Hmmm. My brain does not detect the mistake until I am on the train and glance at my watch which says 11.10. I am absolutely thrown by this as though I have gone through a time warp. It then dawns on me that I am out in my timings but a whole hour. Given that some people at the meeting have travelled from Whitby and still arrive on time, I hang my head in shame as I sidle into the room.

Sometime during the course of the morning, the second bombshell drops. Mr Mason rings to ask where my passport is. He has looked in the drawer and cannot find it. Now, I have a memory of doing something with my passport in the last few weeks but I am not sure what. I feel I needed to enter the details on a form for, possibly, insurance. I remember showing it to Mr Mason and saying how I looked like a peasant or Russian hit woman. I could not decide which. What became of the passport after that, I am not sure. All day I worry about it. I absolutely hate that cancer and chemotherapy has so massively robbed me of my memory. I know I joke about it and everyone says “Oh, my memory is terrible, too” but it’s not the same. I had a good memory. I could file things away mentally and then retrieve them. I knew where I had put things. My brain worked. And to have that suddenly taken away is – well, devastating. A part of me has gone and while I was so ill I didn’t notice because I was only focusing on hour to hour or day to day. Now I am attempting to reconnect with my life in a meaningful way, I am reminded time and again of what I have lost. “It will come back!” people say, reassuringly. When? Just when will I be able to remember what I did and when, who said what, where I put something? How long does it take? Like this, I am not me. Perhaps, more tellingly, I am not accepting the me I have become. The person I do not want to be. I am not angry I had cancer. I am angry with the effects of the disease and treatment and where that leaves me. Yes, yes, things could be a lot worse, I know. But that doesn’t take away from how I feel about being different.

So, I need to turn the house upside down in an effort to find my passport which I will need in the next few weeks. It’s a real pain and I don’t like it.

Just to cheer myself up and because I have learned how to, crank up the volume and enjoy 3.21 minutes of  The Hives  🙂

 

One wheel on my wagon

Following the cracked window episode, we have a total disaster with the shopping trolley. OK, so I have to admit to having a shopping trolley but, in mitigation, I bought it when I was first having chemo. It has done sterling service in hauling massive amounts of cat and dog food home, wine, beer and a variety of other comestibles and has saved me carrying it. Looking at it another way, it has probably cost me a lot of money as I would not have bought half the stuff if I’d had to lug it home. But I digress. On Thursday I go to get some shopping. There is not a lot on the list but it is surprising what I find and how much space 4 loo rolls and some kitchen towels take up. As locals will know, there is not a wide selection of shops in West Ealing but there are some darned good food shops and it’s certainly easy enough to fill a trolley. Even a short shopping trip like this is exhausting me at the moment so I have a tried and trusted method of getting round. 1. Walk to Sainsbury’s then rest on the benches there whilst checking emails. 2. Do a bit of shopping and then pop into a local cafe for a drink and a rest. 3. Complete shopping and rest again outside Sainsbury’s before heading home.

I go to our local cafe which is really a greasy spoon and provides a huge community resource. I never have to place an order as they know what I will have. The tables are often filled with elderly people who meet there and sometimes people who have mental health issues. Oh, and me and my friend, Francesca. Everyone is welcomed. At the moment I am blessed with an abundance of Francesca’s. When we gave our daughter this beautiful appellation, we knew no other Francesca. Now, when referring to a Francesca I have to specify which one I am talking about or Mr Mason gets very confused. And I meet my Italian friend Francesca in the cafe quite often so when I say “Francesca said….”, Mr Mason regards me with a quizzical look on his face until I have clarified for him. But I digress. It can be a bit of a battle in the cafe sometimes, particularly if I have the trolley in tow. There are older women who are more experienced drivers and who have the type with 4 wheels on, a little like juggernauts, but I stick to my 2 wheels on the grounds that I’m not old enough to have one of the bigger trolleys yet.

By the time I get to Sainsbury’s, the trolley is pretty full but I realise there is quite a lot of shopping I still want. I phone Mr Mason and say I have overdone it again and will he walk up and meet me? Before we go through the check-out (half of which they have removed recently to make way for more self-service tills and fewer staff) I take out the lightest items so I can carry them in a bag. Mr Mason is in charge of packing the trolley. Remember this point as you will need it later on. After I pay, I turn to leave the shop and suddenly there is a crunching sound and Mr Mason cries “The trolley has broken!” On looking down, one of the wheels has buckled underneath. I suggest he should go and fetch the car but Mr Mason is more upbeat and is sure he can get the fully laden trolley home with only one wheel and several curbs to go up and down. I am an optimist whereas Mr Mason lives in cloud cuckoo land. I did hear where that phrase came from a while ago but now I don’t remember. Sorry, that’s a bit annoying, isn’t it?

There we are, 2 middle aged people (in appearance only, I hasten to add) one of whom is dragging a heavily-laden shopping trolley along with the benefit of only one wheel. What is left of the axle gradually disintegrates as Mr Mason hauls it along with a noise resembling fingernails scraping down a blackboard. Surprisingly, I am agile enough to distance myself from him as we walk a route observed by our friends and neighbours looking for all the world like a couple of, as Mr Mason puts it so succinctly ‘old loonies’. He tries the pulling method and the pushing method and the going-round-in-circles method but they are all found wanting. In the end he hauls it home like an unwieldy sack of spuds, my suggestion of getting the car ringing in his ears.

Saturday sees us back out on the water. We are lucky most weekends in that Saturday mornings are sunny and even warm but this weekend we are out of luck.  The wind is quite high and the clouds scud briskly across as we change from blue sky to black clouds. For some reason we are all feeling a little tired and jaded and it is cold out on the water. It does not get any better when it starts to hail. Big fat chunks of hail thunder down on us, the wind blows and we can only sit and laugh and scream as we are pelted with frozen water. After an hour of paddling we decide it is time to finish for the day. Our coaches are getting seriously cold and we are all feeling a little demoralised. As you may know, I am not the most nimble-footed of creatures so get help in and out of the boat. We have a new member on the boat today who is paired with me and I am pontoon side on when we dock so I will get out first. I force myself into a standing position, not wishing to burden the new member with a list of my ailments and aching limbs. After shouting for Mr Mason for some moments, I eventually make him hear me and he comes to give me his hand and help me out of the boat. Mostly I have been aided by sympathetic, kind team members like Eddy or Wendy. Today, Mr Mason grabs hold of my hand and simply yanks. He doesn’t even stay in the same spot but takes a step backwards so I am jolted out of the boat and onto the floating pontoon, sprawled head-first. “What did you do that for?” he asks, as though I suddenly took it into my head to provide a floor show for Mr Vyas, newest member and Hare Krishna devotee. It takes me some time to regain my senses and about 4 people to help winch me onto my feet. I am wet, cold and humiliated. For some reason I cannot load the video of us sitting in the hail storm so instead I will give you the song that kept running around my head as Mr Mason brought the bacon home. Enjoy!

Lifting the pea-souper

There have been alarming nocturnal activities at Mason Towers. My week, as you may know, has not been the best. Life goes badly awry and I really feel as though I am having something like a breakdown. Nothing makes sense in my head and I sleep, sleep and then sleep some more. Then I am unable to sleep. My brain ceases to function properly. I can’t speak, I can’t think, I can’t reason and I don’t know how I feel. It’s the old anniversary reaction coming back to bite me in the backside. It’s quite hard to describe. I don’t consciously think about the day of diagnosis, about having cancer, the treatment, the fear. I am aware of it and, obviously, live with the practical effects of having cancer on a daily basis but I don’t submerge myself in the pit of thick, viscous black terror which coated everything 2 years ago. It is most strange. The way the mind works is a total mystery. The feelings I might have expected to experience don’t emerge and dark, black, ultra noir (I ran out of words to say black) sensations  make themselves known instead.  I don’t feel depressed, I just am. I allow myself to slide around in a dark sea of nothingness until, quite suddenly, I feel better. Two years since I received the frightening diagnosis of a rare, aggressive form of breast cancer and the sun shines, the sky is blue and I feel lighter, fresher and can breathe again.

So, the sun shines bright and the sky is blue. Yahoo! Mr Mason gets up and makes a Worrying Discovery. He comes upstairs with the customary cup of coffee and tells me that we are lucky to still have Dog. On drawing back the sitting room curtains, he discovers the glass in the window is cracked. Dog hates foxes. This is as plain as day is day and night is night. Foxes are the bain of his life. They taunt him, they come by especially so they can give him the finger and make him gnash his impressive teeth. More specifically, they drop by so they can shit in his front garden and saunter off without so much as a by-your-leave. On this particular night, a fox came along and did exactly that – a circus-type defacation which meant the fox had to balance delicately on the edge of our plastics recycling bag in order to deliver his piece de la resistance. Was he a French fox? I hear you asking yourselves. I doubt it. I imagine Monsieur Renard is too busy driving French people demented to worry about sending reinforcements over here. An English fox on English soil (well, plastics recycling bag) and it sends Dog over the top. He hurls himself at the glass and it cracks. It is cracked so badly we dare not leave it and immediately phone a glazier to have it replaced. That will be £170 thank you.

The result is that Dog may not sleep downstairs any more. He was lucky not to have cut himself or inflicted a serious injury on his delicate flesh and we also do not wish to be shelling out £170 on a regular basis so we decide to move his bed. Dog’s bed has always been in the bay window in the sitting room at the front of the house. He is cosy there and his bed is next to his toy basket from which he can select monkey, rabbit or Phony Tony, a cheap, poundshop effort on parodying Tony Blair when he was in office. Dog doe snot have a political bone in his body but he does love Phony Tony. Dog also houses a number of cat toys in his basket and these he likes to chew thoughtfully from time to time.

Come bedtime, we have to move Dog’s bed upstairs into our room. He occupies the same space in the bay but will not be able to go into the sitting room and throw himself at the the window as the sitting room door will be shut. He is confused. This is a normal state of affairs with Dog but Mr Mason takes Dog’s bed up to our bedroom and then tries to herd him upstairs. Dog looks bewildered. Am I to sleep upstairs? Why? Do you really mean it? Why are you moving my bed? Where is my duvet? If I go upstairs will you then tell me off? Is this a trick? Little thoughts cross his brain and he then decides he will go with it and go upstairs. Once he sees his bed is in the bay he jumps in with a silent Woo Hoo! Being allowed to sleep in the same room as the rest of the pack is Good News Indeed. The benefit from our perspective is that he does not hurl himself at the window. The downside is the flatulence. I wake in the night and enquire of Mr Mason whether it is him or Dog. He is not really sure and has also been woken by the smell so, on balance, we decide it is Dog. Once, when Dog was a mere puppy, Mr Mason gave him left-over sprouts. It was a very bad mistake and one which has never been repeated though is still talked about, so bad was the resulting aroma. Apparently, according to a Facebook group on the subject of Salukis, they are known to be terrifically flatulent. Apparently Bonio make a charcoal biscuit especially for them in an attempt to mitigate the horrendous smell.

So our week ends with sunshine, blue skies and a terrific paddling session. Last week we managed 10km. This week, with fewer crew and a paddling into a headwind we managed just over 8km which is excellent. Several people have invested in bum cushions (called something less descriptive on the website) to ward off the terrible blisters some crew members have suffered. Some people have recommended soaking our backsides in vinegar and others have suggested a specific kind of sticking plaster which some crew members seem rather keen to stick on other crew members. It is all getting out of hand so we decide on bum cushions. And I have brought the tone down yet again. I do apologise but am afraid the situation is rather outside my control.

It does put me in mind of a lovely Mervyn Peake poem which I will leave you with.

My Uncle Paul of Pimlico
Has seven cats as white as snow,
Who sit at his enormous feet
And watch him, as a special treat,
Play the piano up side-down,
In his delightful dressing-gown;
The firelight leaps, the parlour glows,
And while the music ebbs and flows
They smile (while purring the refrains)
At little thoughts that cross their brains.

 

Even moths have to have fun

This week is an exhausting one. I suspect it is because we are at another anniversary. The 8th March is the anniversary of my diagnosis by the hapless consultant and the 15th March is the official diagnosis day, the one where Mr Mason answered the door only to be greeted by Miss Mason who had flown down from Newcastle to come with us to the hospital that day. Bittersweet.

The consultant who diagnoses me plays hockey. I am pretty sure she does, just by looking at her. There is a touch of what we English would call ‘jolly hockey-sticks’ about her. Kind but also with a touch of “Don’t be a baby, it won’t kill you” about her. She is kind and gentle when giving me the definitive diagnosis. It’s not good news, not by anyone’s standards, but she has seen hundreds of women come and go through her clinic, often having to give them bad news. I recall being seen by her about 18 months before after a suspicious shadow on a mammogram. When I go back for the definitive diagnosis, she just lets me shut the door before she tells me everything is OK and that it is not cancer. I haven’t even sat down at this point but she understands that we want the news as early as possible, especially when it is good. As I leave, elated and feeling bubbly, I tell her I hope the rest of her day is good. She smiles and says it won’t be. She has bad news to impart to some. The strange thing is that although Mr Mason accompanies me to the appointment, for some reason I do not want him to come in with me. How much changes in 18 months.

So, back to this week. I have easy meetings on Monday and Tuesday. The kind where the other people at the meeting are friends (in the first) and almost-friends (in the second) and we are allowed to comment on the food and snacks which are provided. My week goes a little off-track at that point and I’m not sure even now, as I write, that it has recovered itself. On Wednesday I wake and feel still overwhelmingly tired. If memory serves me correctly, I spend some time in bed and then come downstairs to see if I can wrangle my sewing machine into submission. It is only required to hem a couple of pairs of trousers and it doesn’t seem like such a big request but it (I) manages to break 4 needles before it will sew properly. While I am there I knock up a couple of lavender bags as I have a big bag from a failed postponed attempt last year.

Thursday is a real non-starter of a day. I wake late and feel unwell. I have a lunch date with a friend who I text and who graciously accepts my excuse allowing me to go back to sleep until nearly 3 in the afternoon during which time Mr Mason has been up working, walked Dog and made me some lunch which he perches gingerly on the side of the bed. The bed is, at this point, strewn with boxes of drugs as I was trying to organise my medication and then went to sleep in the middle. I am sure there is some psychological name for what I am experiencing, that there are buried thoughts and feelings which haven’t made their way to the surface yet but which I am still feeling the effects of. Everyone reading this blog will have different thoughts. Stay in bed! Get up and go out! Shower and brush your teeth first! I feel an anecdote coming over me. I remember being on the tube going into work one morning. The tube line runs from Heathrow into central London and beyond and the carriage I got in was also the mode of transport for a group of young American women. I got the feeling they had not travelled widely and had perhaps forgotten, in their excitement on leaving their native land, that in England we also speak English. I know it’s not strictly the same language. It’s been tweaked by many and, in any case, did not originate from our shores. They were having a loud conversation, mostly about what English people were like. Presumably they thought the line was for visitors and there would be no English people on the train. My mind blanks out the worst of their stereotypical nonsense but I do remember them saying “English people never brush their teeth”. If only the toothpaste companies had known that they would have saved millions on advertising campaigns. I’ve had some similarly bad experiences with British people abroad, admittedly in countries with a different language but that is no excuse. It was the teeth brushing that put me in mind of it and anyway, it was a good distraction from what is going on in my head (but which I have no access to).

Recovery from a major illness takes time and I have no map to guide me. Are days in bed allowed? Should they be discouraged? Maybe I’m like a little chrysalis and will emerge at some point into a huge, fuck-off butterfly. It reminds me of one we saw in South Africa. I daresay it was actually a moth and must point out at that I was quite unpeturbed whereas Master Mason and Mr Mason leaped from the car shrieking. We were staying at Knysna and had gone to a cafe overlooking the Featherbed Nature Reserve. When we went back to the car it was dark and as soon as Mr Mason turned on the car lights, the moth took flight. I say it was big, possibly a 6 inch wingspan but Messrs Mason Inc believe it was enormous and took flight, as did the moth, although they shrieked whereas the moth stayed silent (but possibly laughed an evil laugh in its head). Moths have to have fun somehow. And they were full-on, girly shrieks.

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Clouds of nonsense

It amuses me to see the cloud of tags next to my blog and the order they have fallen into. OK, so it’s alphabetical order but some of the pairings are outstanding.

Bangkok Beach Bees – A new Beach Boys tribute band

Cancer cake – you won’t find this in Patisserie Valerie

Cats chemo brain – cats make all kinds of outrageous claims to justify their mad behaviour but this would be a step too far

Christmas Colonoscopy – imagine opening that gift card on 25th December

Compression sleeve death – possibly a new one for Midsomer Murders

Friendship gardening – this sounds cosy and neighbourly. I like it

Beautiful Herceptin holidays – trying to jazz up those endless appointments

Liverpool losing things – just more blame culture, in this case it’s Liverpool’s fault

Lowestoft lymphoedema – I think this is an unfair slur on Lowestoft which is actually a very nice place

Mindfulness pain clinic – I suppose this could really exist although I am not sure how being Mindful would help with pain

Phantom itch prosthesis race – beats one of those villages which just roll cheese down a hill once a year

Raging dragons rain ranting – maybe they’re to blame for the torrential rain and floods this year

Scans sea shock shoes – a new tongue-twister

Isn’t it lovely when you receive an unexpected piece of entertainment? And hello to all the readers I have in Belgium and Switzerland. I’ve no idea how you found me but you are most welcome 🙂