The great Hula Hoop scandal and Mr Mason’s allergy

This week I am off to a meeting at the LSE in London, my first proper trip on my own for ages. Strangely I feel a little anxious although I’ve travelled on trains and planes by myself many, many times. I suppose this time I feel vulnerable doing it on my own. I am very tired, I do get very unsteady on my feet and it’s sometimes very difficult even to keep my eyes open so I suppose my feelings are not surprising. Mr Mason gets up early with me and drives me to Boston station. On the way we see a schoolboy apparently waiting for the school bus. “Everything he’s got on is too big for him” Mr Mason observes. “Yes”, I say, “even his ears”. “He’ll grow into them” Mr Mason reassures me. We leave Alex and the boys at the house still working on the roof and chimney. Alex tells me proudly how he drinks 9 or 10 cans of full-fat Coke every day. This may explain his cheeky grin revealing black stumps. He really is a nice man, though. The train is on time and we get to Grantham and I have to change sides but luckily there is a lift. I have decided on the brave step of taking the tube which is something I haven’t done for months. Although it’s only 2 stops from Kings Cross to Holborn, a lovely man stands up to give me his seat without the need to whack or poke him with my stick. I know it’s a digression (and I am Queen of those) but we have experienced genuine kindness from some people since we moved. Don’t get me wrong; I don’t think Lincolnshire is filled with saintly people or that London is a den of thieves but 2 things happened recently which really touched us. Firstly, I have to be cryptic about this first story or the perpetrator would get into trouble. You will remember the trouble we had in having certain services fitted when we first moved in. Well, having Alex and his team on the roof meant that something was moved which meant something in the house didn’t work. The engineer who came had left his mobile number in case anything went wrong so we called him and he was with us within a couple of hours, fixing the problem. He told us that if it happened again, to ring him but that he was going on holiday the following week so if we had a problem then, ring the company directly but not to mention he had been round. We asked what we owed him. Nothing. He was just doing it in his own time because he wants things to be right and if we called the company they would charge us a minimum of £65 each time. So this is not a scam or money-making scheme. He doesn’t want money, he just wants to do a good job. He will do this for 3 months from the date he did the installation and then it’s over to the company. The second kind deed was when Mr Mason went to get petrol. There is a family-owned petrol station nearby who still insist on filling your car for you. Mr Mason asked for £40 worth and was chatting with the pump attendant when the attendant said “You did say ‘fill it up’, didn’t you?” Mr Mason said no but the attendant had only put in something like £43 worth of petrol. “That’s OK” said Mr Mason, quite happy to pay but the attendant said no, it was his mistake and he wouldn’t charge him more than £40. Seriously, we have gone back to the 1950s and, obviously, will continue to patronise this petrol station.

So, where was I? Arriving at Holborn I walked down to LSE where I was early for my meeting. I waited outside the room until the food and drink arrived and then went in and kicked the students out who had been eyeing our coffee and sandwiches. They left without me having to hit or poke them with my stick. It was really nice to see everyone and it somehow felt very different to the last meeting which was only in February. These meetings are known amongst my friends as the Hula Hoop meetings because we always have Hula Hoops. Ever since the first meeting when they were brought along as part of lunch. we have insisted on having them each time so one of the researchers goes into Iceland on her way to the station and picks up a couple of big bags. We have been having Jaffa Cakes (in individual packs) but after 4 years we are thinking of having something else but we’re just not sure what. I’m voting for Tunnock’s teacakes, personally.

Ms Brookes had picked up 2 kinds of Hula Hoops this time – the normal sort and the new low-calorie variety. It was a bold move and there were cries of derision as soon as they were put on the table. However, we are a bunch of researchers so need to investigate things. I stuck to the original type whilst Ms Brookes and Ms Collins tried the new version. We checked the calorie difference which looked quite good until we realised the new low-calorie version has just 15g per pack whilst the original has 24g per pack. Apart from the fact that they didn’t taste so good and, as someone said, tasted like something you wouldn’t buy again, the calorie difference is very small. Puft Hula Hoops have 482 calories per 100g whilst original Hula Hoops have 507 calories per 100g leaving us with a measly 25 calorie reduction. We decided it was an experiment we would not investigate further and I believe some may even have been left for the students.

Coming home is difficult. I simply find it incredibly hard to keep my eyes open. This drowsiness sems to be a perpetual problem at the moment, no matter how much I rest or sleep. I imagine it’s a consequence of the Kadcyla and Fibromyalgia having a little battle between themselves. I meet a nice woman on the train at Kings Cross who I help to find a seat and then find at Grantham she is also going to Boston where she will be working at Pilgrim Hospital. I feel a bit like a tour guide as I point out landmarks along the way and tell her of the good things she will find in Boston. I point out the fields of rape which are in full bloom and remarkably vibrant. She mis-hears and thinks I say ‘grape’ so when I tell her it will be made into oil, she is confused and asks why they aren’t making wine with it. Chatting with her is a good way to stay awake, though.

Arriving at Boston, Mr Mason is waiting which is lovely. The following day my Macmillan nurse comes to see me and is so helpful and thoughtful that I know I have found a gem. She has so many services she can tap into for us, including someone to help with the garden or ironing, and she realises I feel cold in the evening so arranges for a heated blanket to be sent to keep me warm while I snuggle on the sofa. She has contacts with the Marie Curie Fast Response team who are keen on hospital avoidance. Immediately I like the sound of this so she will refer me to them. She also knows where I can get a massage, reflexology or reiki and will send me all the details. She is just bursting with ideas and the only downside is when she has to ask The Question – what is your prognosis? I have gone from wanting to know to really, really not wanting to know. I am in a good place in all senses and don’t want to be told “Well, next year doesn’t look too good”. I just don’t want to know any more. I have run away from London and from cancer and it shouldn’t have any part in my life any more. I know this is illogical but it’s how I feel. The following day I am so tired I only get out of bed at 3pm and am then back in it at 9pm. I think my trip to London has kicked in and added to the sleepy mix.

Today the new cleaner, Jan, arrives telling us about her cousin, Ray Clements, and his cancer. She does a good job on the cleaning front, too. My heated blankets arrive and I finally settle down to blogging although there is a lot of time with me resting my head on my hand and shutting my eyes. Finally, this afternoon we have an appointment at the doctor’s for Mr Mason who has been suffering throat trouble for some time. Of course, it is me who keeps saying “Let’s make an appointment at the doctor’s” to which he always demurs. Finally I have a breakthrough (and control of the patient log-in service at our local GP’s) so today is the day. He cannot remember the name of the doctor. I tell him it is Dr Bumhead. He does not believe me. I say a certain way to find out is to go to the receptionist and say “Is my appointment with Dr Bumhead or another doctor?” What’s the worst that can happen? More demurring. He goes to see not-Dr-Bumhead and comes back beaming. He has an allergy, probably to Lincolnshire but certainly not a hint of an infection and has a spray to squirt up his  nose. I collect my ragtag bag of medicines and discover that instead of giving me slow-release morphine they have given me a small bottle of Oramorph. I will now have to make an appointment to show my GP the box the medicine comes in to make sure I am prescribed the correct medicine in future. Luckily I picked up a supply when I was in London last but the idea of the pain which would ensue without the correct medicine is just not worth thinking about.

So tomorrow we are off to see the potential oncologist at Pilrim Hospital. Fingers crossed she’s nice and knowledgeable, willing to debate and discuss my case with me before making decisions.If she is, she gets the bag of good Hula Hoops I’ve got secreted in my handbag. If not….well, it doesn’t bear thinking about.

And good luck to all those taking part in the Vogalonga this year, especially Wave Walkers and most especially my friend Mrs Bowden who is taking part so she can keep my seat warm for me!


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.


Saturday paddling

After a challenging week, Saturday arrives which means paddling. Not the roll-up-your-trousers at the seaside kind of paddling but full-on Dragon Boat paddling. Well, maybe full-on is a bit of an exaggeration. The weather is grey and rain threatens but we set off across London with our friend and her daughter. The team is set up for anyone affected by cancer and we are gradually building a good team. We are Wave Walkers and we have ambition! We have 18 people on the boat today and everyone is in good spirits. Mr Mason and I have not been for a while so we do a basic refresher with some new paddlers while everyone else gets warmed up. I am paired with a regular Raging Dragon – the professional arm of our club – and he promises to drag me out of the dock should our boat capsize. This is not something that has happened before but we always have a safety drill beforehand and number off so we each have a buddy should there be an accident.

Our coach takes us through a lot of set-up practice. We wave our paddles about to commands of “One! Two! Stroke!” Part of the problem with our group is that we all like each other a lot and spend a lot of time chatting and ribbing each other. Any comment about how well someone is doing generally meets a chorus of  “Ooooh, aren’t you clever?” type remarks.  It also helps to know your left from your right and some of the team clearly have issues with this. I mention no names but you know who you are. Suzannah. We paddle with the paddles the correct way and then paddle with them upside down so we can practice our kick – the leg movement that adds more power to our paddling. During the stroke, you also have to twist  your upper body so you are not using your arms to power the paddle – it is coming from your core and the kick. Mr Mason and I are rather challenged by the slipping one buttock off the seat whilst twisting. Well padded though I am, I feel my bottom complaining about such rough treatment. We swap sides during our training so both buttocks get the same workout. It would look plain weird to build up muscle on just one side. We are planning to enter the Vogalonga 2014. It’s a 30km paddle through the Grand Canal in Venice and it going to be a huge challenge for us as a team. None of us is very fit and we are all at different stages of recovery together with our friends and family.  We also need new members in the London area so if you like the sound of it, get in touch.

Saturday evening we go out with friends to a local noodle bar. On the way I start to feel my muscles aching but in the way you know you’ve been active rather than pulled a muscle. Having also completed my Mindfulness practice before leaving home, I am positively Zen for the evening. We have a lively and fun evening and that night I sleep like a log.

In the morning, I ache in lots of places, particularly the stomach and thighs which, I think, proves I was paddling effectively. I feel my buttocks are bruised, though, and cannot think of any way to find out other than showing them to Mr Mason. He says, after looking, I think, a tad too long that they are fine and unbruised. Clearly my natural padding worked. Paddling together with Mindfulness has given me a clear head, for once, and I feel quite energetic and enthusiastic. I certainly don’t sit down much on Sunday but that may also have something to do with the pain in my buttocks… Roll on the next training session!