Living without sleep

Someone asked me recently whether we have settled into our new home and area. I found I didn’t really know what to say so said a lot of “um”s and “mmmmm”s because it’s such a difficult question to answer. Have we settled in? Before our recent bereavement, I would have said yes. We knew where to go for what, had dates in our diaries for local auctions and had started to know the locals. Then, of course, having dared to relax into a light spot of complacency, Dad, bless him, snuffed it and our world became new, confusing and extremely demanding, a likely parallel to how Mum feels.

At present, Mum is having  respite at a local care home which seems to tick all the boxes. It doesn’t smell of wee and cabbage, staff address the residents by their first name and there are some nice cuddles going on. Tempers of staff are amazingly reigned in when the grumpy Mrs H slams the plate of potted meat sandwiches on the table saying loudly that she’s not going to eat these. She agrees she would like sardines on toast which they produce without accidentally dropping it on her head and she then sits there for 5 minutes mashing the fish into the toast until it’s a right mess. “I can’t eat this muck” she shouts and patiently, oh, so patiently, a carer comes to check what she would like for her tea. Toast is agreed, made and delivered. No jam. Apparently it’s the work of the devil. There is a cat on the first floor that day and she aims the end of her stick at it repeatedly. Luckily it is faster and smarter. On Valentine’s Day the staff put on a pantomime for the residents. We arrive as it has just finished and I see a sign saying ‘Fawlty Towers’ over the servery hatch. There is a lot of noise with women crying and some keening, just making primeval noises. Mum sees us and rushes over saying “This is my son and he’s come to take me home”. She has some white powder over her trousers which we later find out is flour and she accidentally got in the way when it was being thrown. She is profoundly disturbed by the pantomime as are many of the residents and I suspect it won’t be happening again. But the staff give their all in trying to entertain them and to make it a good, comfortable place to be with activities, rather than just a group of old people sitting around a tv set (whether it’s on or off). So Mum is settled as she can be.

During the first few weeks when she lived with us, I found myself not only physically exhausted but not even thinking about cancer. It was all about wee, obsessions about combs and handkerchiefs, how to put a cup down on a table the right way, buying her a whole new wardrobe as she came to us like Orphan Annie with clothes of varying sizes, very few of them fitting and many of them having seen better days. We talked endlessly about food she might like and if I disappeared to my office, there was a little voice calling “Shelley” as she wanted company 24/7. It’s all so understandable. Losing a husband of 70 years, being moved from one part of the country to another, having no friends or relatives nearby. One thing she hasn’t worried about is money, fortunately.

But this shift away from cancer was very strange. It’s like my heart can only hold so much pain at a time. I knew in the back of my mind that I was over-tired (a lovely phrase which I have never understood until I experienced it) and that my pain had increased but the most pressing issues were not getting into arguments with Mum, no matter what she said or how she contradicted me. Once she was in bed, it was like a dam bursting and all I could do was crawl into bed and with sleep coming instantaneously. The sort of sleep Mr Mason has so often enjoyed – head hitting the pillow and into the Land of Nod he tumbles. Now Mum is in respite, I feel I am still catching up on rest and  easily sleeping for 12 hours a night but my mind is all over the place. Like at the beginning of primary cancer, I don’t know where I am again. I’ve found myself noticing a tightness in my chest and abdomen, the sort that predicts a fit of screaming to release tension. I’d be ace at that generic wailing music so many dramas use these days. It can be used for science fiction, films about the Far East, historical fiction. It’s one of our family sayings “Here is the generic wailing music again” and “Fresh start”, mostly used in soap operas. Every week someone has a fresh start. Maybe that’s what I’m missing.

But I’m digressing. I’m feeling stuck again. A few months ago I knew roughly where I was going, even though some of it wasn’t pleasant, but now, I don’t know where I am, let alone where I’m going. So the cancer feelings are creeping back in again and I don’t know what to do with them. I feel I can’t go through the deep distress again. Apart from anything else, I don’t want to go through it. I want to get back on the track I was on; the one where I was beginning to settle down, relax, take up hobbies and appreciate what I have and what’s around me. Now I feel grumpy, tired and out of sorts. I don’t want to eat; I’m genuinely not hungry or interested in food. Poor Mr Mason suggests meal after meal and none appeal. In the end, I usually go with what he wants, simply because it seems the fairest thing to do. For someone with a whole bookcase full of cookery books and an interest in all sorts of food, it feels like another cruel punishment I have to endure – and one Mr Mason endures, too. The only benefit is that I am losing weight slowly and gradually. And as for writing, something I love doing, it holds no interest and seems like another chore, especially when my eyes can barely focus on the screen as they are so tired.

It’s common for women after breast cancer to have Post Traumatic Stress Disorder. I suspect this is it, yet again, brought on by another stressful event. It’s hard to haul yourself out of the big black hole time after time when energy is sapped and overwhelming tirednes is the first thing I experience every morning when I wake. So I suppose I’m not settled yet as I’m struggling again to attain an equilibrium which is tolerable.  It will come but it’s taking a bloody long time.

Lark’s Diary VI

I have been so busy that I haven’t even had time to write my diary. It’s because I have discovered the bestest thing ever! Children! We have had children visiting and although I didn’t know if I would like them, I think they are brilliant and I would like to see more. First we had the Norwegian children, Ask and Liv and they played and played with me. Then we had Caitlyn and Aiden who were taller and talked to me in English. Now we have just said goodbye to Patrick and Isla who were a little bit smaller than Caitlyn and Aiden but taller than Ask and Liv. I’m not sure if it means they are different breeds of children or if they are just older but they all chased me and ran around and I even got extra treats and helped them finish their meals so I think officially that children are the best thing ever.

Mum took me and Archie to see Dr Bum. He is a man who looks after animals and Mum says he usually starts with putting a thermometer up our bottoms and that’s why he’s called Dr Bum. He looked me over and checked my teeth and said I was a good girl. He looked at Archie, too, and said he was in very good condition but he didn’t use his thermometer which I am glad about. I am not sure what a thermometer is but I don’t want anything put up my bottom. I’m sure Mum wouldn’t let him.

We did have a horrible day when Mum went to hospital. Jan, the cleaner, was looking after us and I didn’t like Mum going out without me so I cried and sang the song of my people. Jan thought I would be happy if I sat in the conservatory with Archie because he was sleeping and not crying so she put me in there while she got on with the cleaning. I thought it would be better if I could see the big gate to see if Mum was coming home yet so I tore the blinds off so I could see out easily. When Jan came back, she said she thought she would have a heart attack, although she didn’t, and she phoned Mum to tell her about the blinds. Then she put me in my crate because she had to leave and by the time Mum came home, I had bent the bars on my crate and pushed the tray out of the bottom. I don’t like it when Mum goes out but she says she can’t always take me with her. I don’t know why. I’d be good, even in a hospital but Mum says they won’t let me in. I could go and cheer up the people seeing the doctor. I don’t know if their doctors are also called Dr Bum but seeing a little dog like me would cheer anyone up, surely.

We also went on a long journey to a place called Chester to see Ruth and Philip. I hadn’t met them before but Archie knows them and likes them. It was a long drive and when we got there, Mark gave us a sausage each. Archie ate his in two bites but I was clever and buried mine in the garden so next time we go there will be a sausage tree! I like burying things in the garden because then I can go and dig them up again only sometimes I can’t remember where I buried them. Real bones are the best thing to bury. Bonio go a big soggy.

We have had lots of visitors lately and Peter brought his dog, Ludo, with him. I didn’t like Ludo. I think he was coming to take my Mum away so I shouted at him a lot and tried to nip him on the bottom. Archie said it wasn’t the way to behave with a guest and put my head in his mouth but I wasn’t keen on Ludo at all. Until he was just about to leave and then I started to think he was OK. Maybe he’ll come back and I’ll like him next time. Archie is a bit of a tell-tale, though. It has been raining a lot and I really don’t like going to the toilet in the rain. I don’t know why Mum takes me out on my lead so we can stand in the rain for 10 minutes when I can just do a quick wee as soon as we get back in the dry. Archie was on his sofa in the conservatory and I had to have a poo so I did one quickly and he barked at me and told me off. Mum heard and came in and said “Oh, Lark!” which she says quite often these days. I think I’m back in the dog house again.

No phone, no broadband – thanks Sky!

On 2nd March, knowing we were moving, I got in touch with Sky to arrange phone, broadband and tv services. They sent me mail confirming that the work would be carried out on 13th March. The engineer arrived this afternoon to set up the tv service but was surprised when I mentioned we were also expecting another engineer to set up our phone service.

As we are in a tiny village, the mobile service is intermittent and I cannot rely on that in the event that I need to go to hospital or call a doctor. This is why I planned in advance. Having cancer teaches you that, if nothing else. I managed to call someone at Sky to ask what was happening. The first person put me on hold and then never returned. The second person told me there had been ‘a delay’. Why was I not told this? No sensible response. I explained my circumstances – I have terminal cancer and need to be able to contact relevant services without worrying about not getting a signal. I could have checked online. Oh yes, except that would require broadband – which Sky have not installed. I am now using a dongle which at present is doing the job. Thanks Three – at least  you’re keeping  your end of the bargain. I asked when the line would be fitted. Apparently no-one knows, it’s all a mystery and it’s all shut over the weekend. On Monday they might know more. I will have to phone back…on a mobile that keeps losing signal. She went to check my mobile number at which point we lost signal.

So, for the weekend and who knows how long we have no phone and I cannot reliably know I can access medical services if I need them. I know you’re all going to be fascinated by this saga so I will update the blog (read in 49 countries the last time I looked) when I hear from Sky about how they will rectify this.

UPDATE

Well, as promised, here is Sky’s response: Evening Shelley – when an order is delayed we have a specialist team who work on the order to push it through as quickly as possible – even more so in situations where the phone is a necessity. When we have an update for you we’ll contact you directly. If you wish to discuss the issue further we would advise that you contact us using the number you’ve used previously. Thanks, Kei.

They seem to have ignored the fact that I can’t easily use my mobile and that they have left me stranded without a phone in a situation which makes me very vulnerable – despite my planning ahead, all to avert exactly this situation. And how caring does the response sound? It’s pretty much a standard, poor customer service response. Maybe if they read the blog they would have some idea of just what we’ve been going through for the last 3 years and why a reliable phone is so essential. As promised (and now requested), I’ll keep you posted as to how they choose to deal with their situation.

UPDATE 2

So, Sky’s final response last night goes like this… ‘ If you wish to discuss the issue any further Shelley you are free to discuss it with the team you’ve contacted previously. Thanks, Kei.’

This appears to be Sky washing their hands of any responsibility for the service they offer (and take money for). They know I do not have a reliable mobile signal and I have explained that I got cut off every time I phoned them yesterday because the signal keps dropping out, yet they think this is a reasonable ‘solution’ to my problem. And yes, it’s clearly my problem rather than theirs. So not only do we have no reliable access to healthcare services until they deign to install the phone but we are also out of contact with Mr Mason’s parents. As you might remember, Mr Mason snr celebrated his 90th birthday at the end of February. Let’s hope nothing happens to them, either as we’ll have no way of knowing. Mrs Mason snr did have a TIA 2 weeks ago and that’s also worrying. I hope you don’t think I’m moaning but we really, really need access to a reliable phone service and I feel so disappointed and let down firstly by Sky just not keeping us informed of what was happening but also the very poor customer service response. It’s a shock to say it but Virgin Media at least listened and responded in a human way.

My Best Vein

It seems like hardly any time since we were strolling across the canals of Venice but, of course, real life has a habit of crashing in. Not that the Vogalonga wasn’t real life – it was just an extraordinary slice of real life. So, we are not back more than a day before I am at the GP surgery asking the GP to listen to my chest. I feel breathless and it’s got worse since Venice. I have to say my GP practice is patchy when it comes to good service. On this occasion, a phone call late afternoon scores me a “come in at 6 and hang around” appointment which I am really grateful for. The doctor is one I haven’t seen for years and she’s very nice. She listens to my chest and tells me that one side is quieter which is apparently, not great. She orders a chest x-ray for me for the following day when I have an appointment for a bone scan anyway. By Thursday morning, I am feeling worse and ask Mr Mason to drive me to the hospital which, of course, he does. At this point I am having problems even holding a conversation and I have a pain in the middle of my upper back. I don’t have any problems locating the right department as I know pretty much where everything is. When I have had my x-ray, the radiographer says she will have to check with the consultant as to whether I can go home or not. What?? This I am not expecting and I really don’t want to be admitted. The doctor comes to speak to me and then speaks to the consultant and then comes back to say I can get on with my day but if I feel worse, I must come to A&E. I have the bone scan which I really dislike as the machine is so close to my face and, not being able to breathe properly, I already feel pretty claustrophobic. But then it’s all over, Mr Mason comes to pick me up and we go home.

The next morning Vanessa, my breast care nurse rings to find out how I am. I explain about the breathlessness (which she can hear) and the chest x-ray and the bone scan and she says she wants me to see the Oncologist the following Wednesday unless my breathing significantly improves. The consultant has also asked me to go to see the GP I saw last and get her to assess my breathing. I ask if I really need to do this and am told this is what the consultant recommends so I duly go to see the GP, this time accompanied by Mr Mason in case I don’t make it unscathed. The receptionist knows who I am as soon as I enter and tells me she has been on the phone trying to find the duty radiographer to get the results of my x-ray for the last 20 minutes without success. Eventually I get to see the GP whose office is at the top of a flight of stairs I negotiate slowly. She tells me the x-ray results have actually been sitting in her email but she hadn’t looked there. The main thing is, she has them now.

I have a pleural effusion which means there is fluid between the chest wall and my lung. Now, the thing about pleural effusions is that they are a common precursor to secondary breast cancer and that’s an area we really don’t want to go to. She listens to my chest and says it sounds similar to the last time she listened to it but to rest and rest some more over the weekend which I do. But it is very dull being the captive of the sofa.

On Wednesday I go to see the oncologist. There is a merry atmosphere in Clinic 8 (named so it won’t frighten the horses) as I find my friend Ms Cantini waiting for her oncologist and sporting a nifty 50’s style headscarf. We are later joined by Ms Marsden and Ms De Roeck who have come along to make sure neither of us is dead. I quite like the oncologist’s registrar. He looks like he would be useful on a rugby field. Anyhow, he listens to my chest and then looks down my throat using a special tool (the torch on his phone) and decides that on top of anything else, I have a fungal infection so there are more tablets to be taken and some medicine. The medicine the oncologist has prescribed is utterly vile. A mixture of vanilla and aniseed in a thick, viscous liquid. Yuck. He says that while we are in Clinic 8, the nurses will canulate me for my CT scan and take some blood at the same time. We can then go back after the CT scan to see what results he has got back.

My veins are a mess. It’s no point pretending anything different. They are crooked and spindly and have a propensity to sink and disappear whenever someone tries to mess with them. I have a trump card, though. It is my Best Vein and it lurks in the crook of my right elbow underneath a promising-looking but ultimately useless vein. In the room where they take blood, I point this out but first they want to try my hand. This is not working. As they feel around with the needle in my arm, I suddenly feel faint and they take the needle out and scrath their heads. I am a puzzle. My Best Vein is not working now. They have prodded and poked it so much it has gone hard and is refusing to play, added to which I am now sitting with my head between my knees and that weird “I am just about to faint” sound of voices coming and receding. They bundle me into a wheelchair and whizz me round to another room where I can lie on the bed as they try to get some blood. I have my hand plunged into a stream of hot water to make the veins stand out but this still doesn’t help. In the end they have the bright idea of asking one of the nurses from haematology to just take some blood so the nurses in the CT scanning department can canulate me. This is done and I am then on my way.

The CT scan does not take long at all. I hold my breath at the relevant moments and it’s all done. We find the stragglers from Clinic 8 are now in the cafeteria so Mr Mason and I join them so he can top up his blood sugar levels and I can have a drink. While we are there, something magical happens. When I was first diagnosed, I noticed a man working in the hospital who appeared to have knitted hair. Even in the depths of fear and anxiety, my gaze was drawn to this wonderful concoction perched on his head. Ms Mason tells me that when we were leaving the outpatients department after being Properly Diagnosed, she spotted the knitted-hair man (as I had obviously mentioned him to her as one bright spot in the otherwise gloomy news) but thought it a little undignified and a tad inappropriate to tug my sleeve and point him out. Since then I have not seen him although I always look when I go past outpatients. So it was marvellous indeed to see him sitting in the cafeteria where I was able to examine the hairdo in more detail. That, and try to take surreptitious photographs, of course. His hair seems to be rolled into two fat sausages which perch on the top of his head. The back of his hair looks quite normal. It is a welcome diversion from the day. I’m sure he is a very nice man but I find his hair utterly fascinating.

The blood test results are back, in part. It shows that my inflammatory markers are raised but this could be because I have a horrible infection so we are still none the wiser. On our way out of the hospital we spy Ms Cantini waiting for a taxi so we scoop her up, at the risk of her being blacklisted by the cab company, and drive her home, too. Apparently she has been entertaining the troops with impressions of she and I having a breathless conversation together. And apparently, it was a hoot.

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Venice, part III

Vogalonga 2014 is a bright, sunny morning and promises to reach 29 degrees. We meet in the hotel lobby with those of the team who are staying in the Hotel with us. We are given bags of food by the hotel in lieu of breakfast. I suspect there will not be many people at breakfast as we have almost taken over the hotel. It is horribly early. We have to leave at 6.20 and walk the couple of kilometres to the boatyard where we will pick up our rented dragon boat. I am not feeling on top form. I have been feeling very tired and put it down to the heat but I am feeling particularly lacking in energy this morning. Everyone sets off at a spanking pace and I am soon trailing behind. Again, it is a twisty journey to get there and, as I don’t know where we are going, I need to keep up. Team mates realise I am left behind and wait for me but I can tell there is a lot of nervous energy around our group. When we round the corner to the boat yard, there are already teams waiting to collect their boats but we are so early, we have to wait for staff to arrive and unlock. Once inside, there is a flurry of people rushing to the toilets as they will be scarce along the route. After extra bags have been stowed away, we go outside to put on buoyancy aids and collect our paddles. The paddles are different weights to those we use but we can still use them. Lots of sunblock is applied, crotch straps tightened and then we are off to get on the boat, all clutching bags of food. Somewhat alarmingly, the pontoon is constructed of large, empty water bottles and walking along them seems extremely precarious. I am never the most sure-footed person but this looks precisely the recipe to topple me (as Master Mason calls it). I am not the only one feeling it as we creep along in single file. Then I see that in order to get into our boat, we have to climb across another. Hmmm. I know how incredibly easy it is to capsize a boat which, together with my ungainliness, makes for an uncomfortable few moments as I scramble across, aided by my lovely team members. I am paddling with Ms Marsden who has got in first. At this point we discover the boat is a different size to the one we use as when I sit down, it feels as though Ms Marsden is going to pop out like a cork. We agree to sit separately and on opposite sides to balance the boat.

And then we are off, paddling away across the lagoon and down a canal to take us down the Grand Canal to the start line at St Mark’s. The light at this time of the morning is exquisite and the air is relatively cool. I am told by our helm that I do not need to paddle if I don’t feel up to it. This is one of the things I like about our team. I always feel taken care of and that my health is always taken seriously. But mostly that my team mates care and want the best for me whilst encouraging me to push myself. I can tell that several people thought I would not be on that boat and, over the last day or so, people have been speaking to me telling me I will be on the boat and that they need me there. So, here I am on this glorious morning, paddling out into the lagoon and down a smaller canal into the Grand Canal and to the start at St Mark’s. I think there are over 2000 boats entered into the Vogalonga so it is inevitable there will be some traffic jams.

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Not only are we on time for the start of the event but we are slightly ahead and already moving well by the time we hear the cannon roar to signal the start. Did I mention we have to paddle 30km? In old money, this is 18 miles which is quite a distance and when we first thought of it, we puffed out our cheeks and drew our breath in sharply (not at the same time, obviously) because it seemed quite daunting. But here we are, on the water, paddling away with enough food to feed an army. There is good natured banter on the way round and our progress is pretty good. Before too long we are at the 10km mark and it is time for some people to nip out and have a wee.071 072

Unfortunately, we also run aground at this point and people have to get out, sinking into the soft mud as they help us re-float. Getting back in without capsizing the boat is tricky but it makes me laugh when someone calls the silt ‘Quicksand’ which actually makes people squawk in fear. Eventually we are all back in and it is when paddling across the lagoon that our first incident occurs. Suddenly, what I can only describe as a girlie shriek emits from the middle of the boat. I have been sitting with my eyes shut so it takes me a few seconds to realise what is happening. A fish has landed in the boat, whether by its own devices or whether it has been scooped up by one of the paddles. Two of our regular Raging Dragons paddlers, Redmunds and Mr Ling, both shriek like girls. They may deny it now but there is a lot of panic and squealing from the pair of them, even when it is pointed out it is just a fish. A sizeable one, Ms Key grabs it and throws it back over the side where it swims off, relieved to be away from all the fuss.

Further along, as we begin to hit clumps of boats – and there are all sorts – conversation becomes possible and Mrs Cheong randomly calls out “Sexy!” and “Sexy man!” to different groups. There are people from everywhere, including some other cancer survivor teams. We try saying “Hello” in a variety of languages. Whole boats are singing and slapping their paddles on the top of their boats in time and some people are dancing. 063 087 077Even the dogs are enjoying the day. Mrs Cheong has a special fascination for the gladiator on his paddle board. So I reproduce these photographs strictly for her enjoyment. 090 089

As we queue to get down the Grand Canal, at points we are stopped by Police boats who are trying valiantly to make some order to the vast deluge of boats. Further down, waiting to get into the Grand Canal, there are frogmen in orange wetsuits trying to direct us from the water. We only encounter one boat where the temperament is less than joyful. A woman half shouts at us “This is not a race! Wait your turn!” as we try to find water and not crash into other boats. A few feet along, one of her crew snaps and shouts “Wait your turn, pushing along in your big ship!” and takes his oar which he launches at Mrs Cheong. All I can really do is roll my eyes at these grown ups. Really? Yes, it’s not a race. Is this why you are so upset we are ahead of you? Does trying to whack one of our team really solve anything? Perhaps he was grumpy he didn’t make her ‘sexy’ list. Leaving the grumps behind, we paddle on to the finish line at St Marks where we are thrilled to hear all our names called out over the loudspeaker. Medals are thrown to us in plastic bags and we then begin the long paddle back to the boatyard. Everyone is feeling pretty high on the experience. As we get near the boatyard, an ambulance races past creating a large wake. For one moment, it seems possible we will capsize, so close to the end of our watery journey but the team power up and we paddle through it. When we make the boatyard, it is with sighs of relief and also “are you shitting me?” expressions (particularly from me). This time, tying up the boat we have to cross 2 other boats before we can make the wobbly plastic-bottle pontoon. My trusty team mate Mr Ling is on hand to help me gently and encouragingly to cross the boats and get onto the pontoon. I am sincerely grateful for the kindness he repeatedly shows me, even though I am unsteady and ungainly at times. On the pontoon, other team members are there to take my hand and help me off. As I reach the more solid pontoon, I suddenly cannot breathe. I am not aware of feeling particularly anxious but my breath is hard to come by and it takes some moments before I can get it under control. Mrs Cheong is there, of course, mothering me and helping me to a seat, asking where my puffer is. But I am not asthmatic so there is no puffer to help. The breathlessness subsides and we do a cool down routine before going into our huddle where we try to take in the enormous challenge we have just completed. I think it will take some time for it to sink in.

We wander back to the hotel and shower. Some people are leaving that evening, some early in the morning and some, including us, the next evening. I am starting to be a little concerned about my breathing which makes walking around tricky. There are, obviously, lots of bridges in Venice so the climbing over them is taking its toll on me. But more of that later. Competing in the Vogalonga has been an amazing experience for so many reasons. To have shared it with other cancer survivors and team mates who have all been there to lean on has been incredible. The route itself is beautiful yet challenging and we met some fabulous people on our journey. It will take time to process everything that has happened but it will be an event I will never forget.

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Venice, part I

The time has come for the Vogalonga trip. For those of you who have not picked up on this so far, Vogalonga is a route through the lagoon, round Murano and back into the Grand Canal in Venice which can only be completed by man-powered boats. Well, I should say people-powered but that sounds a bit daft. I am sure you understand. So this is why Mr Mason and I find ourselves leaving the house at 2.30 in the morning to jump in the car, collect Ms Marsden from her home and drive to Gatwick for the ridiculously early flight we have booked ourselves. It is cold, I am in flipflops and it’s not a good start to the day. I have been having some pains in my left chest/lung area – enough to make sleeping and getting a full breath possible – so I am not feeling on top form but we have been planning and training for this for so long, there is no way I am going to miss it. At Gatwick we separate as we are flying with Monarch while Ms Marsden has splashed out on British Airways, complete with a snack breakfast. On Monarch we have 2 attendants with a tea trolley, rather reminiscent of train service. We also bump into fellow paddler Ms Betab in the queue for security and find out she is on the same flight as us, sitting just across the aisle. For the first time in ages, I do not have a screaming baby sitting anywhere near me which is something of a relief.

Arriving at Marco Polo airport, we manage to work out how to get tickets from the machine for the waterbus which will take us to Venice proper. So clever are we that we can even help other people. I don’t loiter deliberately in order to look smart, but both Mr Mason and Ms Betab have to relieve their bladders so I am left looking after the bags and helping people. Once we are through security, we head for a cafe and wait for Ms Marsden who, once she arrives, tells us she didn’t even eat the complimentary breakfast. Oh, the thought of those scrambled eggs and little squashy sausages that you only get on flights going to waste. We point out there are chlldren starving in Africa etc etc but she is unrepentant. Once we get outside, we realise how hot it is. The forecast has shown us good weather for the whole weekend with temperatures around 29 degrees. This will make for hot paddling and I am immediately hot and bothered in a most unattractive way. The waterbus arrives and we all pile on and are made to cram into the fore cabin which is already pretty full. Bags are slung this way and that and we squeeze together in the hope of not being bounced off our seats by a recalcitrant wave. But it is fine and we arrive at Rialto to find the place fairly heaving with people. The hotel we are staying in is one we have stayed in before and somehow, digging into our memory, we manage to find it. As it’s early, we leave our bags there and go back out into the sunshine to find Ms Marsden’s hotel which is down a side alley and looks nothing like a hotel. She is pleased with it, though, and says the rooms are fine and the people running it are helpful so all is well.

I would like to tell you in detail what we did next but I can’t remember so you’ll have to make that bit up. At lunchtime, we find a nice restaurant and sit at tables outside. For some reason, I order a pizza and, thinking it is just the lunchtime menu, expect it to be small. It is huge when it arrives and way more than I can eat. I get a little help from Ms Marsden but in the end we have to admit defeat and even shun the offer of a takeaway container for it. Gradually, we all start to wilt with both heat and tiredness so we take ourselves off to our respective hotels for a snooze. A quiet meal at the hotel in the evening and we are ready for Saturday and whatever that brings!

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In a consulting room far, far away…

Saturday 8th March dawns a little cloudy but with a promise of sunshine. The temperature is mild, even by March standards. Mr Mason and I get ready for paddling as we are off to the Royal Albert Dock to train hard; it is only a few weeks before we go to Venice for the Vogalonga. Dog makes a sad face as we leave him in charge of the house and cats.

It is an important day. 2 years ago I was sitting in hospital being prodded, scanned and biopsied (I’m not sure if that is a real word but you know what I mean) before facing the surgeon who gave me the news that I had cancer in the most cavalier way possible. In case you haven’t heard it before, this is how it went.

“I am very worried about you. The radiologist is very worried about you and I think you should prepare yourself” I ask what I should prepare myself for, thinking he is telling me I have terminal cancer. “Well, when you came in here this morning you told me you didn’t think it looked good so I thought you had prepared yourself.” A few sniffles from me. I look blankly at him. What do we do now? “Do you want to read the radiologist’s report?” I do not know. I ask if I should read it. “Well, it doesn’t make very nice reading” he says, deadpan. He looks at me as though I am a boring person at a cocktail party,not the patient he has just delivered devastating, life-changing news to. No smile, no sympathetic look. Absolutely deadpan. And before you go thinking that’s just my memory of events, Mrs Halford is with me and she is shocked by his attitude. She snatches up the report and says “We’re going”. At the desk, pausing to make another appointment, I ask the receptionist through teary eyes whether I can see another surgeon and she confirms in a way that makes me think she knows what he can be like. The man in the blue chalk-stripe suit, the silk hankie tucked into his breast pocket and looking like a man who hasn’t a care in the world.

I sometimes see him now when I’m waiting for an appointment in hospital and think – should I ask him if I can talk to him for 5 minutes and then give him a good slap tell him how his delivery felt? Would it make any crack in the hefty veneer? Possibly not. I have not found the courage/energy/will to tackle him. Maybe a letter but I would not know what the response was and that is something I would need to see.

So, Saturday, out on the water. It is glorious. We work as a team and I find I am able to paddle a few strokes more each time we perform the gruelling pyramid. We start with 10 strokes with 10 seconds rest, then paddle 20 strokes with 10 seconds rest all the way up to 100 and back down again. It is tough and I cannot pretend I paddle 100 strokes all in one go but by the end of our training session, we find out we have paddled 10km! Wave Walkers even has its own little entry in Wikipedia. OK, cough, cough. I have to admit I added it but why not?

There have been many people and events which have helped me on the road to recovery and who have been around through some of my very darkest moments. Especially Mr Mason who found himself holed up in Boston with me on morphine trying to celebrate our wedding anniversary. That was a pretty bleak moment. He didn’t even get anything to eat that night. No fat rascals. Nothing. I cannot name everyone who has had a hand in pulling me out of the cancer mire but it feels quite emotional to get to this point. A point I was not sure I would reach at times. For those of you who read my Facebook blog – I kept most of the bad stuff out of it. It seemed cruel to tell how I was feeling when it wasn’t good. But here we are today, out on the water with fellow cancer survivors, the wind in our hair and the sun on our faces. I have a ribbon in my hair and I may look ridiculous but you know what? I don’t care.

The woman with three breasts

I am a freak. I now have a choice of breasts to wear. Well, in truth, I have had one silicone prosthesis AND a swimming prosthesis since last Spring so the three breasts bit, written to lure you in, is not strictly true. I have 2 silicone and the swimming breast and none of them seems to be me. Obviously they are not me in actuality but they don’t seem to look like me. It surprised me how much a breast is supposed to weigh. They are not light and delicate things. There is also something strange about going into a room with someone who is trying to match you up so that your frontage doesn’t look lopsided. Janine, my fitter, is very nice and agrees my current prosthesis is not doing the job and tries me with several before she is happy. I have to quietly confess that I don’t see much difference but she is thorough and is pleased with the result. She also finds me a bra which seems to fit better than some of the others I have experimented with so I buy that and then take away a phone number which I can ring and order them at a discount if I quote her name. Bras for prostheses are pretty dire, though, and do nothing for my shape. In the room there is a cupboard full of boxes of breasts. Quite surreal. I am reminded to treat my breast like my own. I shower with it and if it gets a scratch, a plaster will help stop the silicone from leaking out. I am also supposed to put it away in its box at night, as though I am putting it to bed. This, I think, is a step too far and it will have to take its chances on the top of my chest of drawers. Toughen up, silicone breast. This is the real world.

In other news, I am going to go to Bangkok to see Miss Mason and Mr Safaie so I can pretend to help out with wedding arrangements whilst having a nice holiday. Miss Mason has had a few setbacks in the wedding dress department. A svelte size 10, she has gone to a few bridal shops in Bangkok thinking she will try on styles of dress before having one made, only to be met with cries of “No! No! We don’t do fat dresses!” Thai women are so slight that even a slim European size 10 is considered fat and, being Thai and straight talking, they have no hesitation in telling her she is fat. Stuffing herself into tiny size 4 and 6 dresses is a depressing task so she has been looking at styles on the internet and they have been pinging back and forth between us as she chooses the final design. No wonder she is drinking pints of gin and tonic. It is not until I have booked my flight that I consider what I have done and I think it demonstrates that I truly am an optimist. Or else I am impulsive. One of the two. I book my flight with excitement and think about all the things we will do together. Later on, it occurs to me that I have booked a flight to a country which is in a state of turmoil at present. Just last week someone threw a grenade into a shopping centre and some children were killed. They were not the first child casualties of the political turmoil, either. I do not consider the possibility of being blown up or shot when I book. Just a thought.

And finally, we are not speaking to Dog. He has been a very bad dog and is consequently sent to Coventry which is a severe punishment for a pack animal. Mr Mason drops me off at Charing Cross Hospital on Wednesday so I can go to my weekly Maggie’s meeting. After this, he drives to Tesco to buy a few essentials such as cat and dog food. Dog is not allowed out to do his customary wee there. Dog always likes to get out at Tesco and wee in a corner of the car park. It does not matter if he only had a wee five minutes before. Weeing in Tesco’s car park is an essential component of the Dog experience and on this occasion, he is denied it. This, we think, enrages him, together with the fact that there are no squirrels to chase in the park. Dog thinks he has been hard done by and will not come back to have his lead on. He decides the best thing to do is run out of the park, crossing the busy road and prance about with a massive adrenalin surge telling him to run in and out of the traffic coming to a halt in the middle of the road. Mr Mason follows him in a sort of  stoic rage and eventually lures him so he can put his lead on. I suspect at this point there may have been some swearing but I was not there so cannot comment. You must fill in the dots yourself.

When I arrive home, Dog rushes to meet me but with slightly less fervour than usual. I do not greet him. I do not say “It’s the incredible jumping Dog!” as I usually do as he launches himself at me on just two feet (Dog is on just two feet – I am always on two feet unless something has toppled me). I go to the postbox without saying “See you in a little while” which is the signal I am coming back. He worries and frets and casts covert glances at me. Mr Mason goes out on the town to see the band of a friend’s daughter. Oh, how old that makes us sound! He leaves without saying “Goodbye” to Dog. Dog sleeps in his basket quietly and when I tell him to come and have a wee before I go to bed, he does so quietly and without fuss. I go to bed and leave him on his own. In the morning we don’t greet him. I don’t say “Good morning” which is the signal that he can come and see me in bed. He skulks about, disconsolate. The door into the breakfast room which can be a source of terror for him if it is not fully open becomes one he can easily slip through, so desperate is he to please us and have amicable relations restored. Mr Mason and I go out to the shops and Dog stares with his prize-winning sad eyes at us through the window. As soon as he has successfully come back to the lead on his walk, we can be friends again. The risks of him getting killed outweigh the distress the temporary withdrawal of contact makes. Many moons ago, when Dog was quite a bit younger, he failed to come back to the lead. I think I may have told this story already but I really feel it is worth repeating. Mr Mason, after trying many times to capture the very speedy Dog, lay down on the path in the park and whimpered, feigning illness. Dog, being curious, came up to see what was the matter whereupon he was caught and Mr Mason was able to stand up and cough a few times whilst ignoring the stares of astounded onlookers. He has not repeated this obviously successful technique, no matter how many times I ask him. Spoilsport.

Coffee with the milliner

Today I am going to see my friend, Ms Wengraf, and give her some wings. It’s a long story so put the kettle on and pull up your chair. Some time BC (Before Cancer) Mr Mason and I went to an antique shop in Lincolnshire and spied a pair of vintage wings in a cabinet. They were not really a pair except there were two but they clearly came from different birds. There is something fascinating and yet a little gruesome about them. Although beautiful, they appear to have been ripped from some poor bird in order to adorn a woman. So why buy them? I hear you cry. They had been taken from the bird some time ago. We are not sure of their exact vintage but suspect they are from the 1950s at the very latest. This means I am not encouraging people to go ripping wings off birds in an effort to plug a new and exciting demand so I feel it is OK. I still won’t buy or wear fur, despite there being a huge array of fur and astrakhan coats available for very small prices.

So, the wings. I bought them for my friend, Ms Wengraf, who is a milliner extraordinaire. She also supports herself by working all the hours God sends in a cafe and a bookshop, delighting all the customers with her wit, charm and ready smile. Cancer got in the way of me delivering them to her or her collecting them from me. She did come to visit me but my brain was so scrambled and she was so polite that I forgot to give them to her. So, today is the day. I have an appointment at St Mary’s with Holly, my fabulous psychologist and then I make my way to Scooter’s where Ms Wengraf is dispensing coffee and cake with a magical, sparkling aura around her. At first, she greets me and asks me what I want to drink. It is a double take situation. She looks again and realises it is me and at once she flies (not literally) around the counter and we share an enormous hug. I have a coffee and a slice of cake. Not carrot. There is something wrong with carrot cake and I don’t like it. It’s wrong. I tell Ms Wengraf this and and she tells me that she has had a divine courgette cake but it doesn’t convince me. I know beetroot is used to sweeten cake but it’s still plain wrong. I settle for a chocolate and amaretti cake. Not too much almond flavour which makes it perfect for me. We chat in between customers and I give her the wings. We are repelled and entranced in equal measure. Ms Wengraf thinks she will be able to use them but is not sure how at present. Ms Mason has asked her to make a bridal something to wear on The Big Day and I have asked for a headband with ears on it. Yes, I know. Way too old for such things but I like them and, post cancer, why not? At least I have a head to wear them on, unlike some of my sisters. Anyway, heads need measuring before headgear can be made. I leave with another hug and marvelling at the fortitude of Ms Wengraf who has worked immensely hard to get where she is and is still working like a Trojan.

Arriving home, I turn on the tv and catch part of the Olympic ice free short dance competition. The German pair are dancing the second half of their story which apparently involves them waking up on a park bench. The woman then continues to try to get away from the male skater, according to the commentator. Huh?  Not perhaps the romantic story I was anticipating but maybe skating has got more gritty and down to earth in recent years. On the way home I am drawn invisibly into Patisserie Valerie where I am forced to buy 2 cakes, one each for Mr Mason and I. Yes, I know I had cake with Ms Wengraf but call the police if you think it’s criminal. Some days 2 cakes are essential.

Mr Mason’s mild-mannered rampage

Following the breakdown of Mr Mason’s coffee machine, I fear he has turned into something of a monster. Having slaved over our tax returns, he is despatched to the bank so he can pay a cheque in for me. I do hate it when people pay by cheque – is it designed to stop me cashing it? They have not factored in Mr Mason’s tenacious spirit but I digress (my specialty). He is also going to the bank to pay his tax bill. When he returns, he presents me with a stamped and authorised paying-in slip which is unusual as I use the diy drop system. Did you queue? I ask. “Yes” he says, with an impish look on his face. It’s quicker to use the drop box, I say. “Yes, but it was all kicking off in the bank so I waited to see what would happen.” Clearly Mr Mason needs to get out more, or less, depending on your perspective. He explains that the bank was crowded with Polish builders, all trying to pay their money in or tax bills, he wasn’t sure. There were only 3 staff in the bank and they were arguing amongst themselves having been shipped in from other banks when the local staff all went off sick. The builders were shouting about the amount of time they were having to wait and the staff were complaining about the local staff. One of the staff was just going on her lunch break, one was serving customers and the other said she couldn’t help because she was an Advisor and not trained to take money. She apparently sat in full view of everyone doing absolutely nothing which can’t made the situation easier. What an awful situation, I say. “Yes,” says Mr Mason. What did you do? I ask. “I egged them on!”he says. “I sympathised quietly with the builders about how terrible the staff were and then when I got to the desk I sympathised with the bank staff about how awful the builders were.” I guess this is what happens when your coffee machine breaks down.

Tuesday finds me on a train to Leeds for a meeting at the Thackray Medical Museum but the train isn’t going anywhere fast. Apparently a car has hit a railway bridge (I initially typed ‘cat’ which would make the story so much better) near St Neots and this means trains from London to Leeds and beyond are delayed and cancelled. A woman nearby appears to be having a restrained and quite polite nervous breakdown. She makes phone call after phone call telling various people she is sick of someone’s behaviour and is going to put a stop to it. I gather she is in the tv business and that they have someone appearing on The One Show (known in our house as Celebrity Lawnmowers ever since Miss Mason, on watching the first ever show, swore this was a real segment of the show). She is called Clare (without the ‘i’) and the group of people she represents are all texting each other and causing lots of upset and, of course, she is sick of it. From her conversation, I put 2 and 2 together and deduce she is involved with the programme called Big Ballet where heavier people are allowed to dance ballet under the tutelage of Wayne Sleep. Now I want to know the names of the dancers to see who the source of all the rumpus is. I wouldn’t want to cross Clare, though. As we are de-trained (which I believe is a real word) at Doncaster into freezing wind and rain I am able to get a glimpse of Clare and she looks quite fearsome as well as having poor dress sense. Or maybe she got dressed in the dark. Clearly Mr Mason’s mean streak is catching…

But before you cheer or boo us, karma is already catching up in the form of a leak in the roof, right above Master Mason’s bed. Cancer and its treatment, having robbed me of so many brain cells, meant that for a few days we put a bucket on Master Mason’s bed and lay at night fretting and listening to the insistent drip, drip, drip that has been the soundtrack to the awful weather. Only when we were getting a man in to look at and assess the damage did Mr Mason think to put a bucket in the attic. Brainwave! But then I am so easily pleased.