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!


How do-you-do saves the day

Sometimes, when out for a walk, Dog takes it into his head that coming back to us is not a good idea. Recall in Salukis is known to be poor but generally Dog does quite well. As long as Mr Mason is armed with a treat of some kind, Dog will succumb and allow himself to be put on the lead. There have been occasions when he has refused to come back and Mr Mason has had to resort to every trick in the book to get him back. The most memorable (and my favourite) was when Mr Mason lay on the ground, whimpering and pretending to be hurt so that Dog came close enough to be grabbed. How that didn’t make it onto YouTube is a mystery to me.

This weekend we are seeing friends and on Sunday it is our day to say farewell to our lovely Wave Walkers dragon boating team. We decide to take Dog with us as it might be a long day and he likes lounging in the boot on his 2 enormous cushions wearing the coat that makes him look like a lower league football manager. The day is very cold and, despite the wind whipping across the dock, Mr Mason accepts the invitation to get in the boat and paddle. Dog and I sit in the car keeping warm and I spend time speaking to our friend Ms Frumin about the costs of moving. She has found a lovely Polish man who seems very efficient and has given her a very good quote for her forthcoming move. She sends me the details. (He is coming tomorrow so watch this space) One the training session is finished, we walk to a floating Chinese restaurant in Docklands. It’s really good to spend time with people we have paddled with for the last 2 years, who were with me when I had my first signs of secondary cancer in Venice and who have been so bloody supportive and brilliant, I can’t begin to tell you. Mr and Mrs Lee, the coach and helm, run Wave Walkers because they love the sport and want to offer it to people who may not have thought of it. They do it without payment and with huge love and enthusiasm and I am blown away by their commitment. They are ace.

So, we have a brilliant lunch. One of the great things about going to a Chinese restaurant with Chinese friends is that they choose fabulous food, things we may not have heard of or thought of ordering. They always ask politely if there is anything we particularly like or whether we want to order for ourselves but really, when you have experts in the house it’s best to let them get on with the job. In discussing our move to the country, we were told that having pampas grass in your front garden means that swingers live within. Is there a whole floral code, we wonder? We make a mental note to remove any pampas grass and to monitor closely those in the village who grow it, just to test the theory. Whilst waiting for the food, Ms Turnbull tells us of the time she accepted a dare to put a whole Mars Bar in her mouth. You have to realise that in those days, Mars Bars were about twice the size they are now so putting a whole one in your mouth was actually quite dangerous. She couldn’t bite down, she couldn’t close her mouth so she just had to try not to panic and allow it to melt. Very kindly she demonstrated this for me.

IMG_20150201_130232795 After lunch, we reluctantly wend our way back to the car and decide that on the way home, we will let Dog have a good run in the park. This is when he decides to be naughty. After half an hour, I am called by Mr Mason who asks me to join him. We try all sorts of tricks for him. We try the “I’ve got a stick and you can’t have it” trick, we cuddle (Dog likes to get in the middle of a cuddle), I pretend I have found a treat in my handbag, we walk away from him repeatedly and I also pretend to cry. None of it works and it’s getting dark as well as it being very cold. Finally I resort to being English and polite and approach Dog with my hand out saying “How do you do?” Dog has been trained to shake hands and it is this that finally grabs his attention. He approaches, preparing to sit and shake hands and I can finally grab his collar. He doesn’t seem to mind as I suspect he’s also been getting bored and cold. As we leave the park, I spy a house opposite with pampas grass in the front garden…



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!

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.

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!